SURVIVE 2B ALIVE!

Astronaut and Bone Cancer

2009-07-20T16:16:00.000-07:00

There were the three astronauts who miraculously made it home from the dangerous explosion on the failed 1972 Apollo 13 mission to the moon.

Did you know that command module pilot Jack Swigert Jr. who flew in that mission died of Bone Cancer? (August 30, 1931 - December 27, 1982)

According to page 51 from the "Review of NASA's Longitudinal Study of Astronaut Health" of 2002 it was probably a soft tissue sarcoma "where the committee’s Update of 2002 (IOM, 2003a) lists four health outcomes in the first category: soft tissue sarcoma, Hodgkin’s disease, non-Hodgkin’s lymphoma, and chloracne."

As I understand it, the only one that could be considered a bone cancer would be soft tissue sarcoma.".

See original NASA video of Apollo 13 mission to the moon.

Ray - Chondrosarcoma of the Skull (Cranial Base)

2009-05-17T03:20:00.000-07:00

Chondrosarcoma of the Skull (Cranial Base)

Ray Kujala

Published here with permission
of Beth and Ray

Initial symptoms
My husband’s ongoing cancer battle began in October 2002, when he was 47 years old. He made an appointment with his primary physician because he was unable to breathe through his right nostril. When he had no improvement after two courses of antibiotics, his doctor didn’t waste any time -- he ordered a CT scan and referred Ray to a local Ear, Nose, and Throat specialist. When we met with this doctor to go over the results of the CT scan, the news was bad: there was a large mass in his sinus area.

That weekend was our first introduction to the fear and uncertainty that a cancer diagnosis sets in motion. We met the following week with an ENT surgeon at the Cleveland Clinic, and he scheduled a biopsy. We were so hoping that whatever was in there, this mysterious mass, would turn out to be something benign.

Meeting with the surgeon to discuss the pathology results, again we knew the news was not good. He wrote it down for us and handed me the paper, since it was such an unfamiliar word: CHONDROSARCOMA. He had seen only three cases in his career. A bony cartilage-based tumor, in my husband’s case it arose from the skull base and involved the sphenoid and ethmoid sinuses and the right orbit.

Treatment options
The surgeon estimated that he could remove 90% of the tumor, by going through the palate and above the gum line and possibly through the side of the nose. We met next with an oncologist who oversees chemotherapy treatments, and he told us that with chondrosarcoma, chemo “does not usually have a role to play.” Then we met with the Clinic’s radiation oncologist, who explained the options available locally, such as IMRT (Intensity-Modulated Radiation Therapy). But, he told us, in conventional radiation treatment for chondrosarcoma you have only one chance to get it exactly right, and even if you do, there is a fifty percent chance that it will come back (“roaring back,” is the phrase he used). He had heard though, that a Boston hospital was offering something called proton beam radiation, and he thought that it might be used on skull-base tumors. He made a call and came back to tell us that Ray would be a candidate for this type of therapy, which had shown significant benefits over conventional radiation. So it doesn’t happen often, but the Cleveland Clinic made a referral to another institution, and we were grateful for Dr. Crownover’s awareness of new technology.

We spoke with Dr. Norbert Liebsch of Massachusetts General soon after. He requested a very detailed history and an MRI. After meeting with his tumor board, they determined that proton beam therapy would be appropriate, after first de-bulking as much of the tumor as practical. The idea was simply to clear Ray’s airways, as radiation would not shrink the tumor appreciably. (Proton beam therapy renders the tumor inactive, like scar tissue, but does not really lessen the size.)

Dr. Liebsch mentioned a few surgeons with experience in resecting tumors of the same type and location, including one in Philadelphia, one in New York City, and another across the street at Massachusetts Eye and Ear. We knew that it was important for the surgeon to work closely with the radiation oncologist – the surgical plan would need to mesh with the future radiation strategy. Also, the Boston surgeon had said he would use an endoscopic approach through the nose. This sounded much better to us at that time than the more invasive approach suggested at the Clinic. At this point, there was reason to believe that proton beam would take care of the remaining tumor. The percentages (for skull-base, 98% local tumor control at five years, 95% at ten years) certainly seemed to be on our side. So for these reasons we did not investigate other surgeons, and decided to have the de-bulking performed at nearby Mass Eye and Ear.

An important consideration
A major factor that Dr. Liebsch was carefully considering was the proximity of Ray’s tumor to the right optic and cranial nerves. Ray was born with amblyopia and had always relied on his “good eye” – the right one. So any treatment that was undertaken had to be balanced with the possible risk of damage to the right optic nerve, resulting in dramatic vision loss.

Other CS patients with a tumor in the same general area usually complain of headaches, which Ray had, and double-vision, which he did not have -- because he really was only using one eye his whole life. He had never made a big deal out of this, and until this tumor made itself known, I wasn’t even aware of his amblyopia. If he’d had double-vision, it might have presented sooner than his blocked airway, giving us more of a head start on diagnosis and treatment.

All his life, Ray said, he’d worried about something happening to his “good eye.” So of course, preserving the vision in that eye became a great priority in the planning of his treatment.

Treatments begin
The partial resection was completed in Boston in February of 2003; proton-beam therapy was eventually scheduled to begin in June of 2003. In between, I noticed that Ray had trouble with movement in his right eye. He could not move his eye to the right.

Seven weeks of proton-beam radiation included 10 photon and 25 proton treatments. Ray stayed at the Hope Lodge in Worcester, Massachusetts.

This is a home-away-from-home for cancer patients receiving treatment in Boston, and it is funded by the American Cancer Society. Volunteers drive patients to and from their appointments every day.

Ray’s right eye not only didn’t move to the right, it was now continuously “cocked to the left.” It seemed that the tumor had grown enough after the initial resection that it was now impinging on the cranial nerve that controls eye movement to the right. It was hoped that some weeks after radiation was completed, the residual tumor would shrink minutely and come off of the nerve.

Ray got through his seven weeks of radiation therapy with one major downside: fatigue.

By November of 2004 the eye movement was noticeably worse, and more worrying than that, Ray was having visual difficulty as well. We met with the Cleveland Clinic’s neuro-opthamologist. His tests indicated that the optic nerve was being compressed … and it had to be that the tumor was now again active. His first thought was additional radiation, but since he had already received the maximum dosage, he referred Ray to a Clinic neurosurgeon.

A series of craniotomies
Based on these symptoms and new MRIs, the neurosurgeon wanted to very quickly operate, since the immediate concern was to save the vision in Ray’s good eye. Dr. Liebsch recommended very conservative surgery, as he felt strongly that the tumor was not really active, but had calcified enough to compress the nerve. So this is the type of surgery that was performed, a partial resection via craniotomy. The immediate result was very good: Ray’s vision was dramatically improved. Unfortunately, the tumor certainly was active again, and four months later, after similar symptoms, a similar surgery was performed. Tumor removal was complicated because of the previous radiation, which had turned much of the tumor rock-solid. So new tumor was removed while radiated tumor was drilled into, on the theory that only part of it was active. The hope was that the remaining tumor had been irradiated sufficiently that it would remain inactive.

An agonizing decision
After this third surgery, the surgeon indicated that if the tumor continued growing, there would be only a final option available: aggressive resection, including sacrificing the optic nerve. Unfortunately, in August of 2005, this is the decision that Ray had to make in the hope of finally stopping this unrelenting beast of a cancer. A partial angiogram was performed, in which the blood supply to the brain through the right carotid artery was gradually cut off, to verify that Ray could survive with the blood flow through the other carotid artery. The results were good, and it could be that his brain had already developed alternate blood vessels to compensate for the compromised blood flow on the right. So, Ray braced himself for what was termed an “aggressive” surgery, but was still only a partial resection. His right internal carotid artery was clipped, his right optic nerve and other cranial nerves were severed, and as much tumor as possible was removed.

Ray recovered from this surgery but the loss of vision in his good eye was certainly a profound blow for him. He struggled with depression but eventually battled back and was much more functional with his remaining vision than we had ever thought would be possible.

Return of bad news
Unfortunately, as happens so often with chondrosarcoma, a recurrence eight months later put us back into survival mentality yet again. A “routine” MRI revealed that all the space cleared by the last resection was completely filled up by new tumor. Though this news was a complete surprise, maybe it shouldn’t have been: I had noticed that Ray’s right eye, which is closed because of the nerve damage, didn’t look right. It was actually bulging slightly from the buildup of fluid behind it and the involvement of tumor in his right orbit. Attempting a total resection was now the only hope.

Complete removal of the tumor had never really been discussed up to this point. The difficulty of the location, in the cranial base, made the possible complications (leaking of the cerebrospinal fluid or CSF, stroke, blindness, infection) very dangerous. The size of the tumor meant that repairing the separation of the brain from the sinus area would be extremely challenging and risky. The Cleveland Clinic neurosurgeon decided that the risks were too great to proceed.

A ray of hope
We knew of Dr. Chandraneth Sen from St. Luke’s Roosevelt Hospital in NYC, because he had succeeded in complete removal of a very similar tumor from an online friend (from this group). He was probably also one of the surgeons that Dr. Liebsch had mentioned to us initially. His team specializes in cranial-base surgeries; these involve the very difficult area at the base of the skull, behind the eyes and below the brain.

Immediately after receiving the devastating decision of the original neurosurgeon not to go forward, Ray was on the phone to Dr. Sen. Ray had already sent him the latest MRI for his opinion, and Dr. Sen and his co-surgeon Dr. Peter Costantino evaluated the scans and agreed that they would perform the surgery. Not an hour later, Dr. Sen called back and said that they had just seen something on the MRI that no one else had mentioned: the tumor was dangerously close to the other optic nerve. They would operate, and the situation was “not completely hopeless,” but if they found that their approach would mean severe damage to that optic nerve, they would have to abort the attempt at complete resection. Still, we had only this option, and we were very grateful for it.

In a planned two-stage operation, a couple of months apart, Dr. Sen and Dr. Costantino removed all of the massive tumor bordering the brain and did an extensive repair, inverting the “chewing muscle” on the right side and using it to rebuild the damaged barrier between the brain and the sinus / orbit. Abdominal fat and synthetic materials (pioneered by Dr. Costantino) filled in the space and supported the area. In a later surgery, a shunt from the brain to the abdominal cavity was implanted, to drain away excess cerebrospinal fluid that was putting downward pressure on the repair. In a third surgery, the remainder of the tumor (further away from the brain, involving the Eustachian tube and right mandible) was removed.

Recuperation from these procedures, especially the first one, was somewhat long and difficult, but the major risks did not materialize: the first night Ray was able to count fingers, so his left optic nerve was saved; there was no brain damage or stroke; a CSF leak was encountered but successfully patched; and no major infections followed. Ray was on a ventilator for several days after the first surgery, and he was in St. Luke’s neuro-ICU for two weeks. His right eye was extremely swollen and the lid was sutured shut to protect it. Ray reacted badly to anaesthesia, becoming temporarily delusional and combative after every major procedure. With each day after the first week though, things gradually became more normal: he came off the ventilator, tubes were taken out , IVs discontinued, he slowly resumed eating, and finally the nasal stuffing was surgically removed. After three weeks, Ray was ready to leave the hospital and head home to Ohio.

One year later
Subsequent MRIs have shown no clear evidence of residual tumor and as of the most recent one, no recurrence. Ray has gotten much of his strength back. He still has headaches but they are considerably less severe. He also has some nerve damage and pain and numbness around his mouth, which is helped with Nortriptyline. After completing a special low-vision program involving a sight aid called a bioptic telescope, he has gotten his driver’s license back. Ray walks the track at the gym daily, and recently gave kickboxing a try again (!).

Recurrence is certainly an ongoing concern, knowing the nature of chondrosarcoma. But we have had a solid year now of no bad news … and last May I would not have thought that was possible.

In hindsight
We wish we would have explored the possibility of total resection as our first option rather than our last. Because of Ray’s vision difficulties and the proximity of the tumor to his optic nerve and carotid artery, I’m not sure that even Dr. Sen would have been able to recommend that approach – not with the great success of proton beam therapy in most cases. But it is much harder for surgeons to deal with the scarring and complications of previous surgeries and radiation, than it is to operate on a site for the first time. We were lucky that Dr. Sen and his team have much experience working with these conditions.

It could be that we should have pushed for the initial surgery and radiation to have taken place sooner after diagnosis. There was a span of seven months between diagnosis and radiation. Acting sooner might have prevented involvement of the optic nerve and other cranial nerves. It could well be that in the end it wouldn’t have mattered anyway, but we do know that in the intervening months, the tumor grew and maybe the radiation strategy had to be adjusted because of this new growth. When a chondrosarcoma tumor arises in this part of the skull base, there just isn’t much room between critical structures, so maybe time is more of the essence in this location.

For more information on the treatment of skull-based tumors, including a link to other cranial-base surgical teams in the U.S., go to:

http://www.cranialbasecenter.org/

Newer developments
In November of 2007, a follow-up MRI showed “something.” Cleveland Clinic radiologists could not say definitively whether it was fluid, tumor, or even an aneurism. PET scan did not show activity normally associated with cancer. Dr. Costantino was somewhat optimistic that this was something other than tumor, but when Dr. Sen reviewed everything, he seemed to know that it was a recurrence.

In February 2008, Ray had another ear-to-ear incision and craniotomy to remove this very aggressive and persistent tumor. The surgery went smoothly and we headed home for Ohio after only a week or so. Two weeks later he was re-admitted to St. Luke’s with a severe infection. Somehow, air had leaked into the sinus and created a space for infection to develop. (We don’t know for sure, but possibly the pressurization of the airplane so soon after surgery was a factor. We don’t fly anymore.)

The next day, Dr. Sen and Dr. Costantino re-did the frontotemporal craniotomy
and cleaned everything up. There were no complications. This time they kept him for two weeks on IV antibiotics before discharging him, and we stayed in the area another week, just in case, before going home to Ohio.

Then, in a matter of weeks, a routine MRI blew our minds. There was yet another recurrence, this time just below and abutting the right eyeball. In May Ray had surgery to remove this tumor as well as the right eye. This was the blind eye, wher e the optic nerve had been severed in 2005. Dr. Costantino did the surgery, this time approaching through the cheekbone. Ray recovered well and again we headed home after a couple of weeks.

We went back to NYC for a follow-up MRI and appointment with Dr. Costantino. As of June 17, 2008, Ray was apparently tumor-free. We will go back in September to follow up again.

As of right now, Ray is feeling pretty well though the headaches and facial pain and tightness may be a chronic condition. He is walking every day, doing yardwork, and still driving. We attended our daughter’s graduation from Ohio State in June and are looking forward to the wedding of Ray’s god-daughter this weekend.

Gratitude
Ray’s story is unique and his journey has been difficult, but because of his determination and force of will, his refusal to quit, his resilience, and his resolve to find the best treatment and follow through with it, he is a chondrosarcoma survivor almost six years after the onset of symptoms. We are extremely grateful for the knowledge, support, and friendship provided by this group, and for Elizabeth, who makes it possible.

Beth Kujala
August 7, 2008

Note:
In the last sentence, Beth is referring to the Chondrosarcoma Support Group of which they are members.

November 2010: Ray is still doing well

2009-03-14T15:39:00.000-07:00

Chondrosarcoma of the nasal septum:
A case report.

Chondrosarcoma make up only 10-20% of malignant primary bone tumors, with 5-10% located in the head and neck (Downey TJ, Clark SK, Moore DW. Chondrosarcoma of the nasal septum. Otolaryngol Head Neck Surg 2001;125:98-100), and nasal septal chondrosarcoma is extremely rare.

Surgical excision is the only curative treatment and radiation and chemotherapy have a limited role for palliation.

We used a navigation system in endoscopic surgery without complications for a case of chondrosarcoma of the nasal septum by means of a midfacial degloving approach at primary operation and an external incision approach at salvage operation for local recurrence.

To our knowledge, this is the first report of the use of such a system for this surgical approach along with a salvage operation. We discuss the clinical presentation, diagnosis, and treatment of this case as well as present a review of the literature.

PMID: 19282118 [PubMed - as supplied by publisher]

From:
Auris Nasus Larynx. 2009 Mar 10. [Epub ahead of print]

Kainuma K, Netsu K, Asamura K, Hayashi K, Takumi Y, Ota H, Usami SI.
Department of Otolaryngology,
Shinshu University School of Medicine,
Asahi 3-1-1, Matsumoto, 390-8621, Japan.

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Please note:
The image is not directly related to the article but is meant to be an example.
EM

2009-03-12T18:30:00.000-07:00

Chondrosarcoma of the larynx is a rare tumor of the upper respiratory tract that originates from cartilaginous tissue. The cricoid cartilage is the most frequent site of onset at the larynx.

The diagnosis is not always easy, given the tumor's slow growth rate, the aspecificity of the symptoms, and the low degree of malignancy with which most cases present and which often causes it to be mistaken for a chondroma.

A case is presented of a 61-year-old woman with a chondrosarcoma of the larynx, grade 2, originating from the cricoid cartilage and measuring about 3 cm in diameter. The patient underwent extirpation of the tumor together with the cricoid cartilage, with a successive thyrotracheal anastomosis because she refused a total laryngectomy, which would have been the indicated intervention on the basis of the extent and grade of the neoplasm.

At 6 years from surgery, the patient is in a good state of health with good laryngeal function and without recurrence of the disease.

This fact confirms that the surgical approach to chondrosarcoma of the larynx can in most cases be conservative, reserving demolitive surgery for the more aggressive forms, for tumors of greater extent, and for recurrences. In fact, good laryngeal function and therefore a good quality of life can be maintained even for long periods of time.


Chondrosarcoma of the larynx: presentation of a case and review of the literature
From:
Tumori. 2008 Nov-Dec;94(6):864-8.
Rizzo S, Strinati F, Longari F, Bizzotti C, Altissimi G, Frenguelli A.
Otolaryngology Clinic, University of Perugia, Terni, Italy.

PMID: 19267108 [PubMed - in process

2009-02-26T20:54:00.000-08:00

Leiomyosarcoma Memorial information Links on Doreen.

This "Memories of Doreen" site shares more pictures of Doreen's versatile life

Also, CNN has published an article about Doreen Kossove called The Life and Death of an Empowered Patient

In Memory of Doreen Kossove

2009-02-07T21:26:00.000-08:00

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2009-02-01T01:47:00.000-08:00

Chondrosarcoma Jaw

My toothache turned out to be jaw cancer

By ALISON SMITH-SQUIRE
Last updated at 09:52 05 September 2006

When Joanne Todd, 35, went to her dentist with a throbbing tooth, she never imagined that she needed anything more than a simple filling - let alone treatment that would involve rebuilding her face with her hipbone. Joanne, a full-time mum, who lives in Biggleswade, Beds, with husband Mike, a Police Sergeant, 34 and children David, 17, Billy, 13, Jack, 12 and Matthew, five, tells her remarkable story

I took one last look in the mirror - my familiar face, with my straight, white teeth and long blonde hair, stared back.

But tomorrow I was to undergo a life-saving operation to stop the raging cancer, which was eating away at my jaw. I was sick with fear - if I survived it, what would I end up looking like?

My nightmare had begun innocuously enough. Eighteen months earlier I'd been brushing my teeth when I first felt the tiny painless lump on my gum. Smaller than a pea, it was lodged underneath my lower front tooth.

I never thought anything of it and when I saw my dentist for a check-up she reassured me everything was fine. But, a year on, my tooth had begun to throb and gone slightly crooked, so I went back to the dentist.

I thought I may need a filling or even a brace. But instead the dentist told me a routine X-ray had revealed a 'shadow' and she was referring me to hospital.

My twin sister, Tracey, had always said she had a feeling something terrible would happen to her in her thirties. But perhaps her intuition was really about me - immediately I began to worry it was something more sinister.

Mr Tony Giles, a Consultant Oral and Maxillo-facial surgeon at Pinehill Hospital, Hitchin, examined me. He said he thought it was a benign tumour caused by a playground accident I'd had as a child when a swing had crashed into me.

He explained he'd remove my three bottom teeth and clean out the bone. I felt incredibly relieved it didn?t seem serious and the op would be carried out under a local anaesthetic.

At the same time the lump would be routinely biopsied. The operation went well - I was always proud of my straight teeth and felt so grateful Mr Giles had managed to get rid of my lump and only removed two teeth.

But, my relief was short-lived. When my husband, Mike and I returned a few days later for my follow-up visit, Mr Giles looked grim-faced.

Preliminary results revealed it was cancer. But Mr Giles couldn't say what type - or how aggressive - until further tests on biopsy were back.

I thought he must have made a mistake - I'd always been so healthy. I felt the blood draining from my face, a cold, sick feeling swallowing me up.

My first thought was I was going to die and leave my beautiful sons without their mum. Mike and I drove home in tears. I could barely speak to the boys without crying. We felt totally drained so Mike popped out for fish and chips. But, I soon became aware he was taking ages. Then, as I looked out of the window to see him sat in his car on the mobile. Something was very wrong - my heart started pounding.

Mike;s face was white as he opened the front door. Mr Giles had just rung him - the results were in and they weren't good. My cancer, a chondrosarcoma, was aggressive and I would need extensive surgery at a different hospital.

I heard myself scream, it seemed so surreal. We were all totally devastated. A few days later, at Luton and Dunstable hospital, I met my consultant, Mr Chi-Hwa Chan.

He was blunt - as the cancer was growing in my bone, a third of my jaw would need to be drilled away. He would then rebuild my face, replacing my jaw with bone from my hip.

Obviously there was the risk of dying on the operating theatre, dying through infection or my face could be paralysed.

'You're going to look as though your face has hit a bus,' he warned. I would also be in a wheelchair and, because of the bone removal from my hip, have to learn to walk again.

The operation sounded gruesome and I was terrified I'd be left looking a monster. But I had no choice - if I didn't have it, the cancer could eat into the rest of my jaw and eventually kill me.

The five-hour operation was scheduled for three days' time. Meanwhile, I hugged each of my sons tightly in case I never saw them again and told Mike I loved him over and over.

I told Mike not to bring the boys in to see me in hospital - it was the hardest thing but I didn't know how I'd feel myself afterwards. And I didn't want them to see me in pain with half my face missing.

My first thought when I woke up in Recovery was thank God, I'm still alive. Gingerly I moved my mouth and felt for my face but could only feel stiff bandages.

I felt a surge of relief that I'd come through the worse, and didn't feel as bad as I thought I would, which spurred me on to get better.

After five days in the high dependency unit, I went onto a ward. Determined to get better, I refused a wheelchair and took a few tentative steps.

The inside of my mouth was now hip bone with stretched gum stitched over it and felt strangely smooth and toothless - I'd only managed to keep six bottom teeth.

I hardly dared to look in the mirror but when I did I found Mr Chan had done an incredible job. My face looked like a misshapen Desperate Dan's now, but I could already see beneath the swelling he'd shaped my chin brilliantly. And I could eat and speak normally.

The good news was the tumour turned out to be less than one centimetre in size, a CT scan had shown it hadn't spread and Mr Chan was confident he'd removed all of it.

Within a week I went home, elated that the nightmare seemed finally over. But, when two weeks later, the hospital wrote, saying the consultant wanted to see me back urgently, my heart sank.

Further examination of the tumour revealed it was a much more aggressive osteosarcoma, a high-grade cancer that usually appears in large bones, such as in the leg.

It was so rare that doctors had never seen it before in the face - odds of one in 25 million were mentioned.

The roller-coaster scenario of the past few months meant I went into a panic attack at the sight of a hospital. So being told I had to go to UCLH in London to have chemotherapy, to ensure any cancer spread was totally obliterated, was absolutely dreadful.

Within three weeks of chemo, I'd lost my beautiful long blonde hair and suffered complications with double pneumonia. But, the boys were so fantastic - they even shaved their heads to support me.

Fortunately, by the end of August last year, when my chemo had finished, and my hair had begun to grow back, I began to feel normal.

I now face two-monthly checks to ensure the cancer doesn't return and will need further surgery to implant teeth into my 'hip' jaw, but my oncology consultant says my future prognosis is excellent.

I have days when I look at my reflection and a stranger looks back. But Mike and the boys tell me I look wonderful.

In fact, my experience has brought home to me just how lucky I am to have such a fantastic family. And, after everything, I simply feel so lucky to be alive.

From:

http://www.dailymail.co.uk/health/article-403606/My-toothache-turned-jaw-cancer.html

2009-01-31T00:01:00.000-08:00

Cranial Chondrosarcoma:

When Ann Maxwell discovered she had a brain tumour, her response was pragmatic: "If they fix it they will, if they can't, they can't.".........

........In the bright sitting room of her sprawling Edinburgh home, there is no sense of impending doom. There is also no talk of great fights or battles, just a realisation that problems are there to be tackled.

She doesn't look like a woman who had an operation to remove a 3cm tumour from her skull in March. The scar is hidden under her blonde hair and her pretty face has a healthy glow from running regularly..........

It was because Ann, 43, is so fit she thought little of the symptoms that would lead to a terrifying diagnosis. She said: "I noticed a slight lack of sensation in the right side of my face in November, but I wasn't concerned. "I also had a slight loss of hearing but I thought my iPod was playing up and I had a slight ringing in my ear."

She also had a sensation of pressure in her head but had always presumed it was dehydration from not drinking enough while running........

....... Her GP initially diagnosed acute sinusitis, then a virus. In fact it was the pressure of a tumour on her facial nerves that was at the root of the problem.

When she was eventually referred for an MRI scan in February she was convinced there was nothing to worry about. She said: "I felt like a fraud. You consider an MRI scanner a vital piece of equipment that there are queues for and I didn't consider myself to be a big priority. But after the scan, the radiologist looked up as he walked away and gave me a knowing smile. I know why now."

She returned a week later to a Private hospital in Edinburgh for the scan results.The GP told her she had a growth behind her ear, 3cm in size and the neurosurgeon was waiting to see her. Her husband Jonny, a top executive with Standard Life, was in America on business. As she sat alone waiting to see the neurosurgeon, she texted him. It read: "I am in shock. Have just been told I have a 3cm growth behind my ear. Am about to see the neurosurgeon."............

They were unable to give a specific diagnosis without a CT scan and in the intervening days she checked the internet and convinced herself it was a mild, benign tumour. But when she returned a week later with Jonny to visit the consultant, he was direct in his approach. He told her she had a cancerous Cranial Chondrosarcoma and it was embracing so many nerve endings that it was causing numbness, loss of hearing, taste and smell........

...........She describes the period of uncertainty that followed as a 'roller coaster' of emotions. Her children, Muir, Rory, seven, and Cameron, 12, were her first consideration. She said: "I had massive fears about not seeing my kids growing up. There were endless tears with my husband, crying for the life we might never have."......

.........With characteristic determination Ann tracked down Professor Michael Gleeson, a head and neck surgeon who had operated on 13 patients with Cranial Chondrosarcoma. Far from telling her she was on a metaphorical death row, his experience had shown the tumours could be operable and the prognosis was good. The four-hour operation to remove the majority of the tumour was carried out in March at the The National Hospital for Neurology and Neurosurgery in London.

She was on her feet 24 hours later. It is an incurable cancer and will be there for life but the first part of her recovery has been a success.

Another operation scheduled for September should leave only one per cent of the tumour behind. It will be slow growing and if it reaches a certain level they will operate again. But so far the prognosis remains excellent and Professor Gleeson has assured her she will not die from it. It is now a condition to be managed.............

..............She said: "As a family unit we are very strong and this has brought us even closer together............

"Our strength of character has prevailed through this. There is too much to be done in the charity and in life to have it any other way."...................

'When the consultant told us, we felt extreme shock. My husband and I sat crying. Your life flashes before you and suddenly you are clinging to it......................

Excerpted from an article:

http://www.dailyrecord.co.uk/news/tm_objectid=17045760&method=full&siteid=66633&headline=tumour-won-t-stop-me--name_page.html

Chondrosarcoma of the Right Knee

2009-01-30T23:19:00.000-08:00

KUALA LUMPUR: Ten years ago, S. Subaseeni had to choose between becoming a mother and being able to walk.

A lump was found on the back of her right knee when she was three months pregnant and she had to make a hard choice: risk losing her leg to continue the pregnancy, or terminate it to have immediate surgery.

In unbearable pain, she chose surgery, thinking she could conceive again. But she has not been successful. And six months ago, another lump was found on her leg. She was diagnosed with Chondrosarcoma, a bone cancer.

The 33-year-old said she had to quit her job as a teacher at a private institution two months ago because she could no longer bear the pain while walking.

She said she used all her savings for the first surgery and medical expenses, which cost RM10,000.

Her husband, freelance car salesman M. Gunalan, said: "The doctor said her leg will have to be amputated if she does not remove the lump immediately."

To see full article:
http://www.nst.com.my/Current_News/NST/Thursday/National/2447057/Article/index_html

KUALA LUMPUR: The Inner Wheel Club of Petaling Jaya has lent a hand to ease the suffering of Subaseeni Subramaniam. The plight of the 33-year-old former teacher was highlighted earlier this month after she was diagnosed with Chondrosarcoma of the right distal femur, a condition which limits her ability to walk and bend her knees.

A cheque for RM5,000 was presented by Inner Wheel Club president Jayanthi Pillay to Subaseeni at Balai Berita on Wednesday.

Jayanthi said: "We hope the money will help her and encourage others to donate to the unfortunate. We wish her a speedy recovery."

The money was raised from the annual installation dinner and events held by the club. Subaseeni, who could not contain her tears, said she was happy and thankful for the contribution, which she regarded as a "life-saver".

To see full article:
http://www.nst.com.my/Current_News/NST/Sunday/National/2462843/Article/index_html

2008-11-05T17:57:00.000-08:00

CHONDROSARCOMA METASTATIC TO THE HEART

This review summarizes the clinical manifestations and results of treatment of chondrosarcoma metastatic to the heart. Including the patient in the present report, a total of 18 patients have been reported.

The most common site of cardiac metastasis was the right atrium. Dyspnea and pleuritic chest pain were the most common symptoms associated with cardiac metastases.

The median time from the initial diagnosis of primary chondrosarcoma to death was 36 months, and the median time from the initiation of cardiac symptoms to death was 2 months. Treatment of primary chondrosarcoma included local radical resection in 14 patients.

Treatment of cardiac metastases consisted of palliative support in 13 patients and surgical resection in 5 patients. Median survival following the development of cardiac symptoms was 2 months for patients treated nonsurgically and 18 months for those who underwent resection of cardiac metastases. The longest survival (24 and 28 months) was obtained in 2 patients with metastases confined to the heart that were successfully resected soon after development of cardiac symptoms.

These results suggest that surgical resection of cardiac metastases in patients without widespread other metastases can result in substantial prolongation of life.

From: The Annals of Thoracic Surgery, Vol 45, 291-295,
CY Leung, RG Cummings, KA Reimer and JE Lowe

Department of Surgery,
Duke University Medical Center,
Durham, NC 27710.
Copyright © 1988 by The Society of Thoracic Surgeons

2008-10-31T14:08:00.000-07:00

Suppressive activity of fexofenadine hydrochloride on metalloproteinase production from nasal fibroblasts in vitro.

BACKGROUND: Allergic rhinitis (AR) is an inflammatory disease characterized by nasal wall remodelling with intense infiltration of eosinophils and mast cells/basophils. Matrix metalloproteinases (MMPs), MMP-2 and MMP-9, are the major proteolytic enzymes that induce airway remodelling. These enzymes are also important in the migration of inflammatory cells through basement membrane components.

OBJECTIVE: We evaluated whether fexofenadine hydrochloride (FEX), the carboxylic acid metabolite of terfenadine with selective H(1)-receptor antagonist activity, could inhibit MMP production from nasal fibroblasts (NFs) in response to TNF-alpha stimulation in vitro. METHODS: NFs were established from nasal polyp-derived fibroblasts (PFs) taken from patients with AR. Nasal mucosal fibroblasts (MFs) were also induced from nasal mucosal tissues from septal deformity patients without allergy. PF and MF (2 x 10(5) cells/mL, each) were stimulated with TNF-alpha in the presence of various concentrations of FEX. After 24 h, culture supernatants were obtained and assayed for MMP-2, MMP-9, tissue inhibitor of metalloproteinase (TIMP)-1 and TIMP-2 levels by ELISA. The influence of FEX on mRNA expression of MMPs and TIMPs in 4 h-cultured cells was also evaluated by real-time RT-PCR. Furthermore, nuclear factor-kappa B (NF-kappa B) activation in fibroblasts treated with FEX for 4 h was examined by ELISA.

RESULTS: FEX at more than 350 ng/mL inhibited the production of MMP-2 and MMP-9 from both PF and MF in response to TNF-alpha stimulation, whereas TIMP-1 and TIMP-2 production was scarcely affected by FEX. FEX also inhibited MMP mRNA expression and NF-kappa B activation in PF and MF after TNF-alpha stimulation. CONCLUSION: The present data suggest that the attenuating effect of FEX on MMP-2 and -9 production from NFs induced by inflammatory stimulation may underlie the therapeutic mode of action of the agent on allergic diseases, including AR. Journal ISSN: 0954-7894 Issue: 34-12 (2004) Pages: 1890-8

2008-10-30T13:58:00.000-07:00

Malignant peripheral nerve sheath tumor is a rare soft tissue sarcoma of ectomesenchymal origin. It is the malignant counterpart of benign soft tissue tumors like neurofibromas and schwannomas and may often follow them. Common sites include deeper soft tissues, usually in the proximity of a nerve trunk. Breast is an extremely rare location of this lesion and presentation as a breast lump in the absence of pain or previous benign neural tumor is even rarer.
Case presentation

A 38-year-old female presented with complaints of painless, hard breast lump for three months which was clinically suspected to be a ductal carcinoma with inconclusive fine needle aspiration cytology. Histopathology revealed a malignant spindle cell tumor which was confirmed to be malignant peripheral nerve sheath tumor on the basis of immunopositivity for vimentin, neurone specific enolase and S-100.
Conclusion

To the best of our knowledge only six such case reports have been published in literature. The differential diagnosis of malignant peripheral nerve sheath tumor should be considered by the clinician as well as the pathologists in the work-up of a breast neoplasm as treatment and prognosis of this rare malignancy is different.

World Journal of Surgical Oncology 2007, 5:142
full article can be seen here

2008-10-29T13:53:00.000-07:00

Neurofibroma is a type of nerve sheath tumor. It is an inherited disorder. Neurofibroma is a tumor or growth located along a nerve or nervous tissue. It is classified into 2 distinct types, neurofibromatosis 1 (NF1) and neurofibromatosis 2 (NF2). NF1 occurs in about 1 in 3000 births whilst NF2 only occurs in about 1 in 50,000 births. NF2, also known as bilateral acoustic neurofibromatosis, is characterized by multiple tumours and lesions on the brain and spinal cord. Tumours growing on the auditory nerves that lead to hearing loss is usually the first symptom of the disease. NF1 and NF2 occur as a result of defects in different genes.

NF1 is caused by a mutation on a gene located on chromosome 17 and NF2 on chromosome 22. The mutated gene can be inherited from a parent who has NF or in some cases you could be the founder of a spontaneously mutated gene. A parent with NF has a 50% chance of passing the gene on to each of their children. Neurofibromatosis usually progresses. As the number of neurofibromas increases, more neurologic problems develop. People who have central neurofibromatosis develop tumors in the auditory nerves (auditory tumors, or acoustic neuromas) on both sides of the body.

The tumors may reason hearing loss and sometimes dizziness, as early as age 20. About one third of people with peripheral neurofibromatosis notice no symptoms. Neurofibromas that affect nerves in the head can cause blindness, faintness, deafness, noise in the ears (tinnitus), and incoordination. Medium-brown skin spots develop on the chest, back, pelvis, elbows, and knees. These spots may exist at birth or appear during infancy. Between ages 10 and 15, flesh-colored growths (neurofibromas) of varying sizes and shapes begin appearing on the skin. There may be fewer than 10 of these growths or thousands of them.

In many people, neurofibromas under the skin or an overgrowth of the bone under the neurofibroma produces structural abnormalities, such as an abnormally curved spine (kyphoscoliosis), rib deformities, inflamed long bones in the arms and legs, and bone defects of the skull, including the part surrounding the eyeball. There is no cure for NF. The major aim of treatment is to monitor its development and intervene when necessary. Solitary oral neurofibromas are usually treated by surgical excision, depending on the extent and the site. The genetic counseling is recommended when people with this disorder are considering having children.

Credit given to Juliette Cohen

2008-09-28T10:53:00.000-07:00

If you have ever wanted to see how sarcoma surgeries are done, I came across a site where a few are shown. This is not for the squeamish to observe. These are true surgical videos. What is nice about them is the low key explanations of what is being done. There are no gory sound effects. Though they are presented in the Norwegian language, it is fairly easy to understand the steps that are being taken regardless of what language is your own. If you have English, then you will recognize many English sounding words to help you understand. If you have medical background you will have more.

Among several things that I found most interesting was how the muscles are carefully separated and sutured in place and how they were again carefully put back into the correct order as found. It is astounding to realize the kinds of tools surgeons must use. In the video of the humerus chondrosarcoma, the orthopedic surgeon used what appears to be drills, saws, screws and a hammer. It's no wonder that a nickname for an Orthopedist is "sawbones". Though I suspect that comes from a time when the tools used were much more similar to those of a carpenter.

I can totally appreciate how medical practice has grown and changed over the generations. My grandfather had an amputation due to an on the job railroading accident in the year 1900. I know what kind of tool his Sawbones used back then.

These surgical videos helped me realize how exacting and expert a surgeon must be.

2008-09-22T01:19:00.000-07:00

Among my collection of old medical books, one published in 1927 simply entitled Bone Sarcoma, (based on 700 cases) by Anatole Kolodny, has a good introduction which includes a page of history.

Please keep in mind that everything written then may not necessarily be a medical fact right now.

Kolodny wrote:

The word "sarcoma" belongs to those time-honored terms which are enjoying free general usage in medicine despite the fact that they do not at the present express the original ideas suggest by the sponsors of the term. The name sarcoma has been used to designate a tumor with a firm and fleshy feel. The conception of sarcoma a century ago was very wide including all tumors that could not be grouped with other tumors belonging to the few separated entities known at that time. Curiously enough with such a wide conception of sarcoma, the tumors known today as bone sarcomata were not included in this group.

Referring to that century ago, of course he meant 1827, and interesting to me was that bone tumors were not considered to be sarcoma. He mentions Rudolf Virchow, (Founder of Pathology) as not having discriminated sharply enough between sarcoma of bone and cancer.

You might be interested in reading a clarifying article published by the Journal of Bone and Joint Disease which Kododny wrote in 1925, Diagnosis and Prognosis of Bone Sarcoma

2008-08-15T13:13:00.000-07:00

Widely Prescribed Anti-parasite Drug Targets Cancer-causing Protein

a drug used globally to treat parasitic infections: mebendazole, has been identified by researchers to become possible treatment opportunity for Chemotherapy resistant form of malignant Melanoma. The discovery of this could lead to making it less expensive.

Researchers at the NYU Cancer Institute and the Ronald O. Perelman Department of Dermatology screened a library of already approved drugs for activity against the most deadly form of skin cancer And this know parasitic drug shows promise. This could help prevent having to wait such a long time before a new drug for Melanoma could be brought to the forefront.

To read the full article to which I am referring, it is located in the Aug. 13, 2008 issue of ScienceDaily here.

Note: There has often been suspected a correlation between Melanoma and other Sarcoma. Recent research has shown that Melanoma is a subtype of Clear Cell Sarcoma

2008-08-10T22:07:00.000-07:00

Ever have one of those post cards that say "Wish you were here", and you're glad you're not?

I love post cards and collect them, whether they are someone else's old ones, or addressed to me, or I just buy them outright and never send them. I'm hooked. Some of those post cards, I look at, and say to myself, "I wish I were there!"

Today, I didn't get a postcard. I got an email notification. I signed up to receive them whenever a certain blog has been updated. I went to the site to see what was new and was so happy to see it that "I wish I were there!"

Go take a look at Doctor David's Blog

2008-08-08T23:44:00.000-07:00

I've written before about how important dogs are to sarcoma. Not only because they get sarcoma, but because sometimes the research that cannot be done on humans can first be approved for them. So, that is why I have often featured sarcoma dogs on this site. Not to mention they are our family members. Our awareness of them and their part in the future of sarcoma is important.

A well known dog who had osteosarcoma died on Thursday. His name was Jack Rappaport. Jack was the beloved family member (and I mean it) of Jill Rappaport who is a correspondent on the TODAY show.

Diagnosed September 2007, Jack had an amputation as part of his treatment. That still seems to be the only way for osteosarcoma, and other bone cancers. The kinds of limb salvage surgeries developed in research animals for humans are now outpriced for pets and their owners. Jack also received chemo as so many humans with osteosarcoma do. And had a period of recovery and relative good health. But, Jack didn't remain cancer free.

According to Jill's blog, Jack has been called "the Ambassadog of Hope for pets with cancer and other life threatening conditions, for Tails of Hope Foundation and ACVIM Foundation (American College of Veterinary Internal Medicine Foundation) two wonderful organizations that make the public aware of the incredible new life saving options and medical advances for our pets."

Jill blogged Jack's osteosarcoma story in October of 2007. Dog owners around the country were given the opportunity to learn and become more informed right away about osteosarcoma in dogs. I hope it brought new hope and awareness to know that they can get care for their pets with this kind of cancer.

In March of 2007 Meredith Viera introduces Jill and Jack on the TODAY show during the time he was in chemo treatment.

Veterinary Oncologist, Dr Gerald Post made a most awesome comment that most people do not realize. He said, "when I treat an animal with cancer, not only am I helping that animal but I can potentially be helping a child with cancer in five or ten years from now."

I can't emphasize enough how true that is. With a five year old family member in the midst of her Ewing's Sarcoma treatment since March of this year, it clings close to home for me. In order to make her treatment effective, I wonder what dog, or other animal went through the kind of complicated specialized surgery her arm will have to grow into. What creature had the kind of chemos she is going through right now and the next couple of months? Will it be enough? What dogs have been treated so that Veterinary scientists can make new inroads into the treatment options for sarcoma bone cancer? I also ask myself if the survival rates for dogs with sarcomas are any better than the survival rates for humans.

Since this blog is about the rareness of sarcomas, I often point out that cancer funding gets shunted in the direction of those cancers that have a higher population of patients. It makes good economic sense. Companies who develop new drugs find it necessary to make huge financial investments in supporting the research that goes into a new promising drug. It has to be worth the return in order to do this kind of thing, otherwise the businesses will not make a profit when they have a new product. So, for rare cancers, like sarcomas it is hard to maintain sufficient funding, often needing to scramble to other sources in order to keep focused research going.

I have often wished that someone famous would have an interest in sarcoma. Someone famous who has the power and money and open contact with the media to be able to turn around the future of sarcoma research. Sadly, it seems someone has to get a sarcoma in order for that to happen. We already know that is less than one percent of all cancers. What are the chances for better treatment options? For a cure?

Here is a dog who lived his life to the fullest, bringing happiness and love into the heart of his well known owner who shared his diagnosis with the world, his successes with surgery and recovery as an amputee on the TODAY show. Here is Jack who has been featured on Oprah. Jack already, as Abassadog of Hope for the above mentioned organizations has affected the lives of millions (I believe) of other dogs and their loved ones. And now, Jack who has left this world to become Angel Ambassadog.

Does Jack have a viable legacy that will include directly affecting the future of research for osteosarcoma?

Jill, I know you are in the midst of your grief. I know what that could be like. I deal with the deaths of my bone cancer support group friends way too frequently. Meredith and the TODAY show staff, can you put this experience to it's best use? Oprah, you make so many people's wishes come true. Make this one for Jack and for your own dogs, and for those people who get the rare sarcoma bone cancers that have been left behind. Together you can create an opportunity for the future of medicine that needs it the most.

2008-08-08T11:08:00.000-07:00

The people supporting Sarcoma Awareness in the picture are important to me. I'm so proud of them, and grateful to them for organizing and following through with something I am not able to do. They are making a change in the world of sarcoma, and the future of all sarcoma patients!

I keep an eye on what's going on in the world for sarcoma, (particularly chondrosarcoma). I use Google alerts to do this. Whatever subject I am looking for, google will email it to me so I don't have to keep doing the searches over and over again. Today the title that caught me eye: Coral Springs woman organized Team Sarcoma Walk

Aha! I know who this is! She's an amazing woman who gets my vote for courage and commitment beyond the "call of duty" as they say. Last year she got involved for the first time with organizing a Team Sarcoma event that made the news. And now, this year she has surpassed herself, with the help of some friends. Together they "raised and inspiring $10,500 at the second annual Team Sarcoma Initiative Fundraising Walk on July 20. More than 100 supporters walked through Tradewinds Park in Coconut Creek for nearly two miles in support of the cause" according to the Sun-Sentinel.

Amy says, "I have become committed to supporting others dealing with this painful and life-threatening illness," said Kropp. "My goal was to match what we raised in 2007, and I am so amazed that we were able to collect $2,000 more this year thanks to passionate and dedicated supporters. Plus we had two other local Sarcoma survivors, Nancy Scaravelli and Debbie Williams with us, and we dedicated the walk to Terri Marriage who lost her battle to Sarcoma this Spring. Our efforts are raising awareness, research funds and creating a circle of support for those affected by this disease."

Go Team Sarcoma!
Go Team Sarcoma
Go AMY!!!

2008-08-06T04:00:00.000-07:00

I came upon an interesting site today. When I was a little girl, my father gave me a gift of an etymological dictionary. Do you know what that is? Every word in it gets a description of it's possible history and origin. I loved reading that book until the bathwater was cold!

The website I saw today is an etymological dictionary, and has a search engine in it.

So, I typed in "chondrosarcoma", but no luck.

So I typed in Sarcoma. Aha!

It said:
1657, "fleshy excrescence," Medical L., from Gk. sarkoma "fleshy substance" (Galen), from sarkoun "to produce flesh, grow fleshy," from sarx (gen. sarkos) "flesh" (see sarcasm). Meaning "harmful tumor of the connective tissue" first recorded 1804.

What struck me about the entry was it's reference to sarcasm!

Sarcoma and sarcasm are related? Is sarcoma the cause of sarcasm? Or is it the other way around? Excuse me while I try to be funny.

So, I entered sarcasm into the search box.
1579, from L.L. sarcasmos, from Gk. sarkasmos "a sneer, jest, taunt, mockery," from sarkazein "to speak bitterly, sneer," lit. "to strip off the flesh," from sarx (gen. sarkos) "flesh," prop. "piece of meat," from PIE base *twerk- "to cut" (cf. Avestan thwares "to cut"). Sarcastic is from 1695.

Just thinking about it reveals a deeper truth to me. (okay, now I'm getting philosophical). For one who has a diagnosis of sarcoma, one may have a sense of the tumor, or fate itself, is sneering, taunting and mocking. Mine certainly did, rudely setting up house uninvited into my body!!! And this did make me "speak bitterly" of it.

And there you have it, both sarcoma and sarcasm... a fleshy substance, one to grow and produce it. One to strip it off and cut it.

And there it was as recorded in modern medicine of 1804. "harmful tumor of the connective tissue"

I think I have a copy of that article.

Two words... related in such an odd way.

2008-08-04T18:17:00.000-07:00

8,000 People Join the Team Sarcoma Initiative to Fight a Rare Cancer

"From its humble beginnings in 2003, when seven people who called themselves "Team Sarcoma" biked 200 miles in Louisiana , the Team Sarcoma Initiative has become an international movement. More than 8,000 people worldwide participated in this year's Initiative, surpassing the 3,400 who participated last year. Events in 14 countries were hosted by individuals, advocacy groups and medical centers seeking to raise awareness of sarcoma, a cancer that affects hundreds of thousands of people worldwide." ...

For the complete press release, see http://tinyurl.com/59e3fc . You may know some of the patients, survivors, caregivers and physicians that are quoted in it.

For the list of all the organizations involved, see http://tinyurl.com/4znxd8

For a list of all the events that took place, see http://tinyurl.com/6jc9nb

You might also be interested in two earlier press releases that give additional perspectives on this effort both of which also contain quotations from a number of patients, survivors, caregivers and physicians.

1. Medical Centers and Concerned Groups Unite in the International Team Sarcoma Initiative: http://tinyurl.com/6jq4fs

2. Patients, Survivors, and Caregivers Worldwide Band Together to Fight a Rare Cancer: http://tinyurl.com/5hba9e

If you are interested in forming a team in the 2009 Team Sarcoma Initiative (July 18-26, 2009) and being a part of this international effort, please contact me at shriver@genesis2.com

Best regards,

Bruce Shriver

2008-08-03T12:40:00.000-07:00

Abstract found in pubmed: Article can be found in Bone Joint Surg Br. 2008 Aug;90(8):1090-6.; Variability in the presentation of synovial sarcoma in children: A PLEA FOR GREATER AWARENESS.

Chotel F, Unnithan A, Chandrasekar CR, Parot R, Jeys L, Grimer RJ.

Service Orthopedie, Hopital, Universitaire Mere Enfant de Lyon, 59 Boulevard Pinel, 69677, Bron cedex, France.

We have analysed the pattern of symptoms in patients presenting with synovial sarcoma to identify factors which led to long delays in diagnosis.; In 35 children, the early symptoms and the results of clinical and radiological investigation were reviewed, along with the presumed diagnoses. The duration of symptoms was separated into patient delay and doctor delay.; Only half of the patients had one or more of the four clinical findings suggestive of sarcoma according to the guidance of the National Institute for Clinical Excellence at the onset of symptoms. Of the 33 children for whom data were available, 16 (48.5%) presented with a painless mass and in ten (30.3%) no mass was identified. Seven (21.2%) had an unexplained joint contracture. Many had been extensively investigated unsuccessfully.; The mean duration of symptoms was 98 weeks (2 to 364), the mean patient delay was 43 weeks (0 to 156) and the mean doctor delay was 50 weeks (0 to 362). The mean number of doctors seen before referral was three (1 to 6) and for 15 patients the diagnosis was obtained after unplanned excision.; Tumours around the knee and elbow were associated with a longer duration of symptoms and longer doctor delay compared with those at other sites. Delays did not improve significantly over the period of our study of 21 years, and we were unable to show that delay in diagnosis led to a worse prognosis. Our findings highlight the variety of symptoms associated with synovial sarcoma and encourage greater awareness of this tumour as a potential diagnosis in childhood.

PMID: 18669969 [PubMed - in process]

2008-07-05T12:39:00.000-07:00

Shame on Spherion!

When someone you love has cancer, making sure you check all your benefits with your employer may not leave your family with the security andpeace of mind, you thought you might have.

A case in point is Thomas Amschand (R.I.P) who had cardiac angiosarcoma.

After seven years of litigation, Spherion Corp. has won the case and Tom's wife is left with little of the expected life insurance benefits from Aetna.

Sure reminds me a lot of the movie, "John Q." where Denzel Washington plays the part of a man who learns that his employers changed insurance companies on him, insurance which would not cover costs for his son's emergency heart transplant. The similarities are ironic.

I hope you read the links I've provided. And if you are as outraged as I am, you can google Amschwand +Spherion to follow the progress from beginning to end Whereby these two big companies ruin the faith we should be able to have in employers and Insurance providers.

Is there nothing we, as consumers and patients, can do about situations like this?

I took the only action I know, and that is to complain. Will my complaint ever get to those who need the conscience to make changes in this terrible injustice? Probably not, but I would like to think one little scratch here and another there, and maybe if there are enough fleas to bite the dog, the dog will be forced to scratch himself.

I wrote an email to th Spherion "contact us" addy and this is what I wrote:

SHAME ON YOU FOR WHAT YOU DID TO YOUR OWN EMPLOYEE, AMSCHWAND, AND HIS FAMILY.

I feel sorry for who ever might be reading this, because your hard earned benefits will be twisted away just when you need them, too. I hope you have a contingency plan!

I know the big shots will never see this, but, forewarned is forearmed reader.

Best Wishes,
Elizabeth Munroz

2008-07-01T15:46:00.000-07:00

Autumn Reeser, of The OC, narrates.

When the video completes, don't stop watching!

It moves on to the one by Melissa, a wonderful woman I met in Vermont after having shared emails. She is so committed to helping to get a cure for sarcoma. There are incredible scenic pictures and of those who attended that Team Sarcoma event.

When Melissa's beautiful video is finished, keep watching! The UK Sarcoma Group has a video message too.

Hang in there for just another couple minutes and watch Grant's video. What a beautiful soul! He's got such an uplifting message and asks us to support sarcoma research.

Even if that is not possible for you, let's remember those of who sarcoma took away from us.

And for those of us who are fortunate to be here, let's celebrate another year of life!

2008-06-21T02:19:00.000-07:00

California Rural Legal Assistance ( CRLA )is an organization that helps many people who find themselves in situations where they would not be able to help themselves. I went for an interview to determine if I could get a representative to help me with an appeal.

A lovely woman, Judy, invited me into her large office to sit down. It had a huge old fashioned oak desk and chairs to go with it. I felt transported back to the 1950's. Since we have been having some very hot temperatures in my neck of the woods, I was pretty uncomfortable. Having noticed my red face, Judy opened a window, "for a cross breeze".

During the interview I had to answer some questions and so my history of Chondrosarcoma was brought up. Right then she turned her monitor in my direction and showed me a picture of her little grandson who has Neuroblastoma. He has tumors in several locations in his body. Presently receiving chemotherapy, he will soon be a recipient of stem cells. She told me that there is a 30 percent chance he could survive, and by God, she is going to believe her grandson is going to be in that category. Her faith sustains her and she "believes in miracles".

As I drove home with the windows up and the air conditioning blasting, I got to thinking about what she said.

I know quite a lot of people who have faith of all sorts. I have learned there are many varieties. An orchard with many different kinds of fruit trees is the way I like to see it. Some fruits are barely beyond their flowering, some fully ripened, and some have fallen from the tree. Often I notice that the branches are intertwined so you can hardly tell where one tree leaves off and another begins. Isn't life incredible?

And miracles. I used to think they were something that happened in olden times, or perhaps just plain out and out hoaxes. But, I see them occur among the members of my support group enough that I have become a believer that sometimes people can really beat the odds. Jeff's wife, for example who went eleven years with Mesenchymal Chondrosarcoma metastasized to her lungs, before it was discovered again, after which she had more surgery. I would have questioned that in the past, thinking it was just a story someone had passed on until the number had grown. But, within the group, people tell their stories, and give the facts. Learning Jeff's story... Well, that's pretty miraculous to me!

Then, there was Shari, who had grown up loving horses. Her childhood dream was to be a horse veterinarian. She was pretty devastated when her chondrosarcoma diagnosis came along and she had an unavoidable internal hemipelvectomy. Her doctor told her she would only be able to lead a very sedentary life. He even wrote an article about it. Shari didn't let it get to her. She decided she was going to do her best to do whatever she could. She had already been accepted at the veterinarian school and she wasn't going to throw that opportunity away. So, she attended even though her leg was not attached to her pelvis and gave her a pronounced limp. I know she had a very hard time of it, keeping up with other students, doing all the intensive phsycical things demanded of her. She wasn't about to claim her disaility. she didn't want special treatment. When she graduated I was as proud as if I was her own family member. Shari completed her dream and lived it for a while. Eventually, the pain issues arising from having to handle such large animals all the time got to her, and she decided to downsize. Now she is a vet for llamas. What a great specialty! Oh, I almost forgot something about Shari. Missing her love for riding horses in competitions, she embarked upon a new hobby. She now flies airplanes. Miraculous? I know her doctor told her that. I think so too.

So Judy's faith and belief in miracles? I hope they work for her in the most effective way and her grandson grows up to be a fine young man.

Theres a really great support group and informational site for those dealing with Neuroblastoma.

2008-06-19T02:45:00.000-07:00

I went to a small wedding reception a week or so ago attended by about 50 people. Most of them are related to me in one way or another. As I took pictures for the bride and groom's "phamily foto" album, I noticed the resemblances among some. I thought, they must be blood related. Then, I noticed the familiar faces, the children I knew related to the family by marriage twenty years ago. The marriages have all dissolved into divorces, but the family connections have continued. These grown up kids came to me one by one, "remember me?".

My son and his wife came with me. His half sister's father was there... my ex husband. Are you following me? She is my daughter. Her other half-brother attended, as well as her step-mother. The groom is my grandson. His father attended, even though the party was held at the step-father's house. The in-laws were in attendance five generations! I met a lot of lovely people. In-laws, out-laws, ex-laws, steps and, half-steps. Well, now you get the picture, don't you?

What am I getting at here? I ended up taking about 150 photos, after which, I sat down with various folks getting acquainted. I have a little key chain attached to my camera case and a number of times people had commented on it wondering why it was there. It is an odd thing to have on a key chain, but a great conversation starter. My key chain has a little plastic spine and pelvis attached. The part of my pelvis which had been amputated is painted a bright red. It's a visual device to help drive home the fact, not that I suffered from cancer, but that I survived cancer. Bone cancer at that! I just want people to know, there is hope. Believe me it is a jaw dropper.

Oh, I know it's not nice to talk about cancer at a wedding party. But, my rule is that I carry my key chain where ever I go. Anyone who doesn't want to know anything about a little skeleton wont ask. Anyone who is open to what their question might bring up, gets to have an answer. As I sat there at the bride's family table among three matriarchal women explaining that I had chondrosarcoma and.... Sherri, the redhead, put her arm on my shoulder. I couldn't help but hesitate and there was that look in her eye....that look telling me the next words out of her mouth. "I had cancer, too."

We hugged and smiled triumphantly for having fought the battle and won. Sherrie quietly pointed out to me the two men of her family at the table who had also survived cancer. They didn't want to talk about it, but nodded and politely smiled when Sherrie introduced us and indicated our commonality. Were all these wonderful folks blood related to the bride? I wondered.

One of the ladies at the table behind me tapped me on the shoulder. It was Rose, my dear, dear friend from college days and the godmother of my daughter. I jumped up and abruptly left my smiling in-laws to laugh, and so I could hug her and her husband. These people are my "compadres". Dave left us to go talk to one of the older men at Sherrie's table. Immediately we went into "girl-talk" mode. On Rose's left was Angie, the beautiful Auntie of my great grandson and best friend of the bride. To my left was Tracy, wife of my son-in-law's brother. Got that? So, the discussion quickly turned to the key chain and I began my commentary. I barely got through a sentence or two, when Rose spoke up. In the years that have separated us, she had Leukemia and considers herself presently healthy and healed. I have to admit she looked great. Then, she pointed over to Angie, and mentioned that she too was a survivor. I could see it in her eyes, that slightly haunted look that says, "I don't know if I yet feel free enough to claim I am cured".

I already knew Angie's story through the family grapevine. She had been battling lymphoma for years, and though considered to be in remission, she was still on some kind of medication. She lives her life very carefully. In her twenties with a six year old daughter, she didn't come to the party to "party".

Tracy sat there quietly, not commenting on the conversation, letting us chat among ourselves, once in a while nodding at something we said. Her arms across her chest trying to hug herself, or was she just cold. I wanted a chance to get acquainted but I knew she was having a hard time even being there let alone cozy up to strangers. Two years ago she had been told she was cured of Breast Cancer, and now she just got diagnosed with Leukemia and had a blood transfusion the day before. She was embarrassed about the fact that others were quietly being informed to go donate blood in her name. Some people are more private than others.

And then there was the family members who didn't attend, my Uncle Phil diagnosed with advanced colon cancer. He chose no treatment. He believes in the power of his mind to cure himself. Oh, dear Uncle, if that were true, then why did you get it in the first place?

And there is five year old Ellia who wasn't with us running around with the rest of the kids. She was diagnosed in March of Ewing's sarcoma. She's been on months of chemo, just had her humerus bone replaced and has begun chemo again for a few more months.

I didn't get to talk to everyone intimately, but it struck me right between the eyes. Here was a group of fifty people, out of which nearly 20 percent had a cancer diagnosis. What would the count have been if I had been diligently taking a census? Would there have been more?

Have you thought about it? How many people in your circle of friends and family have dealt with cancer, are now dealing with cancer?

2008-06-12T11:15:00.000-07:00

Spindle-Cell Sarcoma

He was a decorated doctor and a pioneer in the field of forensic psychiatry in Singapore.
Click to see larger image

Dr Ang Ah Ling, 67, helped set up the department of forensic psychiatry at Woodbridge Hospital and was director of the Institute of Mental Health from 1996 to 2000.

He gave his expert opinion and advice in many cases, most notable of which was his examination of vandal Michael Fay in 1993.

In 1999, Dr Ang received the Public Administration Medal (Silver). But to Dr Leonard Ang, 37, and Dr Leslie Ang, 26, their father was more noted for his kindness and love for his work .

Dr Leonard Ang, an opthalmologist, said: 'There were three main loves in my father's life - love for his family, love for his work and love for his Christian faith. He touched the lives of many people.'

On Wednesday, the elder Dr Ang died peacefully from a rare cancer known as spindle-cell sarcoma.

Dr Leonard Ang said: 'In end-March 2005, my father noticed a lump in his groin area. It was surgically removed and found to be a soft tissue cancer called a spindle-cell sarcoma.'

He added that such cancers were very rare and did not respond well to treatments like surgery, radiotherapy and chemotherapy.

He said: 'My father went for radiotherapy. He was then well and led a normal life until April this year, when he developed a cough it was found that the cancer had spread to both lungs.'

Dr Ang said that his father had no airs and always thought of others before himself.

'When we went on family vacations, we had to bargain for the shortest possible time away as he was reluctant to leave his patients or transfer them out while he was away.'

His father also never liked to turn down an offer for help.

Dr Ang said: 'For years, he was the guest of honour at functions organised by the Woodbridge Hospital Recreation Club. He would also always buy a table for hospital functions, even though the family members were unlikely to attend.

'So the table would be bought and the seats were often given away.'

His example inspired his sons to take up medicine. Dr Leonard Ang said: 'But none of us took up psychiatry because I think that field requires patience and a certain temperament. Dad was perfect for psychiatry and I do not think any of the sons fit the bill.'
From Electric News By Arul John

2008-06-11T23:56:00.000-07:00

I wrote about Josh Isaac before. Today, I received an email forwarded on to me by a dear friend. I contacted the author and asked if I could reproduce her message here. I think it is very important for those who don’t know anything about sarcoma as well as those who do. This is the message as follows:

My husband, Joshua Isaac, made a documentary film about his experience battling recurrence of epithelioid sarcoma entitled “My Left Hand”, the film is a very raw, personal, and emotional accounting of his experience. It covers a two year period, which included two chemo regimens, radiation, and the amputation of his left hand and eventual triumph.

The 81-minute film premiered at the Seattle True Independent Film Festival (STIFF) in 2007 where it won the Survivor Spirit Award. The film also screened that year at the Tacoma Film Festival winning the Audience Choice Award.

Unfortunately the disease returned this past fall/winter with lung mets and spots on his scalp. Josh began experimental chemotherapy treatments in Oregon and continues to fight on. He recently made DVDs of My Left Hand to support the NW Sarcoma foundation's annual fundraiser in Seattle. These DVDs can be purchased from the movie's Web site

http://mylefthand-themovie.com/default.aspx

You can watch a four minute trailer of the video there to learn more. A portion of the $20 sale will go to support those affected by sarcoma. In addition, his hope is that the movie will help people learn more about the struggle with sarcomas that individuals face while providing insight for those who may be on this journey. Meanwhile, I hope that it helps Josh - he's a wonderful father to three young kids- in his efforts to continue to be strong and fight this disease with courage and creativity.

Thank you for your support.
Kim Isaac

You can read Joshua's Blog here:

2008-05-28T13:05:00.000-07:00

Chondrosarcomas are the most common primary malignant tumor of the chest wall (20-40%). They can involve the sternum but more commonly develop from the costochondral junctions of the first four ribs.

About 15-20% of all skeletal chondrosarcomas occur in the ribs or sternum. Most appear in patients 20-40 years of age. Local involvement of pleura, adjacent ribs, muscle, diaphragm, or other soft tissue may develop. Pain is rare, however, and most patients complain only of the mass.

Chest x-ray shows destroyed cortical bone, usually with diffuse mottled calcification, and the border of the tumor is indistinct.

Successful treatment necessitates wide local incision and en bloc resection to achieve negative margins. Incomplete excision carries a significantly worse prognosis. Overall survival, as in all soft tissue sarcomas, is heavily dependant on the histologic grade. Completely resected low-grade chondrosarcoma has a 60-80% 5-year survival.

Local recurrence portends future metastatic disease and poor survival. Yet complete resection can often be curative.

Therefore, even in the setting of large tumors larger than 15-20 cm, resection should be considered even when it necessitates removal of more than six to eight ribs.

With advances in epidural pain control and immediate reconstruction techniques, most patients will do surprisingly well. Despite large chest wall resections, most patients can be immediately extubated and will not suffer drastic changes in pulmonary function or chest wall dynamics.

Excerpted from:
Page 337 of Current Surgical Diagnosis & Treatment By Gerard M Doherty, Published 2006

2008-05-25T13:28:00.000-07:00

Fundraisers give amputee hope for prosthetic leg
Provided by: Sun Media
Written by: GLENN KAUTH
May. 25, 2008

A Fort Saskatchewan teen battling bone cancer is getting more than a ride from the paramedics who take her to hospital.

Yesterday, emergency workers held a silent auction and barbecue at the city's fire hall to help 19-year-old Brittany Taylor raise the $40,000 she needs for a prosthetic leg. She lost her left leg last summer after doctors discovered a malignant tumour had spread to her knee.

"It's overwhelming. The community has just come together," said Taylor, who has been on crutches since last year's amputation.

The money raised yesterday, combined with the almost $30,000 community groups have already donated, will put her close to what she needs for the artificial leg. Next week, she plans to get fitted for the limb, which she hopes to be using by next month.

The idea for yesterday's fundraiser came from Graham Bradley, a manager with the Fort Saskatchewan ambulance services. He and his colleagues met Taylor last year during the many trips she made to the Cross Cancer Institute in Edmonton for treatment. "We happen to know her from taking her back and forth to the city for different tests," he said.

Besides Taylor's quest for a new leg, she's also been working to prevent people suffering from osteosarcoma from losing their limbs in the first place. Recently, she started up a campaign called Save-A-Limb in which she sells bracelets to raise money for research. While she suffers from the same disease as Terry Fox, Taylor thinks more funding should go to researching osteosarcoma.

"The entire community around Edmonton has been just phenomenal," she said, noting that so far she's brought in $10,000 for projects at the Cross Cancer Institute.

For more information on the Save-A-Limb project, send an e-mail to britt.savealimb@gmail.com.
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2008-05-21T11:21:00.000-07:00

Mammen succumbs to cancer
Battled disease for five years
By Bethania Palma, Staff Writer
San Gabriel Valley Tribune

Photo Gallery: Brian Family

SAN DIMAS - Brian Mammen, a 20-year-old South Hills High School graduate who battled bone cancer for five years, died last week.

Friends and family remembered Mammen as optimistic and a devout Christian, a music lover who played the guitar and dreamed of going to college to study animation.

"Brian was just a sweet kid," recalled his father David. "The thing with him is, he never complained. He always found a reason to be joyful every day."

Mammen said his son noticed a bump on his thigh when he was 15, and at first thought it was a sports injury from playing basketball. He was later diagnosed with osteosarcoma, a type of bone cancer that is most prevalent in teenaged boys.

After doctors removed his femur, the cancer went into remission, but it then returned to his shoulder, forcing the amputation of his arm.

"Any kid that has lumps that ache, they should get them checked immediately," David Mammen said.

Michelle Bart, who through her organization, Helping Heroes Productions, organized a visit by Van Halen bassist Michael Anthony to Mammen's San Dimas home, said the young man was an inspiration.

"He was a big encouragement when I went through cancer myself last year," she said. "No one should complain about their lives considering what he went through."

David Mammen said one of his wife's co-workers knew Wayne Brady, and the comedian learned of Brian's illnesses. He invited the family to see his show in Las Vegas.

"He got us a room and we were able to meet him afterward," Mammen said. "He's just a gracious and caring man."

Patrick Curley, Mammen's pastor at St. John's Lutheran Evangelical Church, said despite powerful treatments and debilitating setbacks due to his illness, Mammen would attend church regularly.

"He didn't fear death, he didn't fear cancer," he said. "He was a very devout Christian young man and very brave."

The Mammen family has started a foundation in Brian's memory to help fund osteosarcoma research.Donations can be made to the Brian Mammen Foundation, in care of St. John's Evangelical Lutheran Church, 304 E. Covina Blvd. in Covina.

2008-04-21T09:56:00.000-07:00

Kate's Mother Writes

I remember Kate’s first ear infection. She was only 4 months old and I was so anxious and upset that my baby was hurting and sick. Every parent wishes nothing but health and happiness for their children. It is possible to imagine your child being seriously ill and you think that you know just how you’d feel and what you would do. Reality is nothing like you ever imagined. The instant feeling of terror and helplessness is nothing like you have ever experienced before. When your pediatrician says the words “your daughter has cancer” your world as you’ve known it, is forever changed.

Our journey with this disease began in May of 2003. Kate had come to me in April, just before spring break and showed me a very small lump (about the size of a quarter) on her right leg. It looked like a welt. I figured she had banged it during gymnastics practice and told her we would keep an eye on it. A few weeks later I asked her how the bump on her leg was, fully expecting it to be gone. She said it was much bigger and I asked her to show me. It was at least double the size of just a few short weeks ago. My husband and I were sitting on the couch and we both looked at each other with worry. I had a sick feeling in the pit of my stomach. The next morning I called the pediatrician and they scheduled an appointment right away. Kate’s doctor looked at it, and examined it, and said she would be right back. I was still holding out hope that she would just say it was nothing to worry about and send us for an x-ray or something. Instead, she came back to the room with a piece of paper with the address and name of a pediatric oncologist on it. She said they were waiting for us and to drive right over. My husband was with us thank goodness, and we left immediately. Kate thought it was all an adventure, a morning off school! I was scared, but still very optimistic.

By the end of the day after a CT scan of her leg, a meeting with the oncologist and a surgeon, we knew she had a tumor of some sort in her leg and that it would need to be biopsied. The surgeon scheduled it two days later and everyone kept telling us there was a 75% chance it was just a benign tumor. We were worried, but figured with a 75 % chance of it being benign; things would turn out just fine. Kate was nervous but thought of it as another adventure, as she had never been in the hospital before. The day of the biopsy the surgeon came out and told us we should prepare that the pathology would not be good news. He was a wonderful person and spent nearly thirty minutes with us answering all of our questions. The wait then began. We knew a week later that it was a primitive high grade sarcoma of some type, but the hospital pathologists had never seen anything like it. They sent it to Emory University to Dr. Sharon Weiss an expert pathologist on Sarcomas.

As we waited to hear just what type of sarcoma she had they did a bone scan, a chest CT, a PET scan, and an MRI. The news was worse than anyone thought. She had stage 4 cancer with what looked like mets to her lungs and femur. A Hickman catheter was placed and a bone marrow biopsy was done. Two weeks after we had taken her in we heard the words Mesenchymal Chondrosarcoma. No one knew much about it and there was no treatment protocol. Because she was stage 4, they began chemo using the Ewing’s Sarcoma Protocol. After two rounds of chemo she had the tumor removed and we had the first good news in two months. Her tumor was only 3.8cm in size and the surgeon had obtained great margins. No radiation therapy would be needed. We also found out that the bone biopsy of the supposed met in her femur was normal! She then had three weeks to heal and chemo began again. Another month went by and the chest CT was repeated. It had been three months since the original and it showed the exact same tiny spots were unchanged in any way. The radiologist said it was unlikely they were Mesenchymal Chondrosarcoma mets, but a probable post inflammatory process. This was our first moment that we thought wow, maybe this isn’t as bad as everyone thought! Kate finished her chemo at the end of September, just 5 months after diagnosis. Her chest CT still showed no change and everyone was cautiously optimistic at this point.

Her continued chest CT’s show her lungs to be unchanged and she is thriving as a fourteen year old. We have had moments of worry over the years, most recently a new lump she found that needed to be biopsied. Thankfully the lump was some scar tissue and bone growth over a metal plate in her leg. It did bring back the fear instantly and reminded us of our family’s commitment to help raise funds for sarcoma to someday find more effective treatments for this difficult cancer.

The experience we have been through has taught each of us valuable lessons in life. I have learned to “not sweat the small stuff” of which I was very guilty of before. I also enjoy each moment of my children’s daily life. It has made dealing with the moody teen age years much easier, as I can quickly bring to mind our terror of losing Kate and it gives me infinite patience with my two kids.

My husband who has always been a wonderful father and husband, has now re focused his priorities and makes sure his life is balanced between work and home. He has a renewed sense of family and is always the life of any activity, always the one who has a car full of kids going up to snowboard for the day or taking the kids out in the boat to wakeboard or go tubing.

My son, Drew who is 18 has a sense of what family really is. He has developed a wonderful sense of compassion for others and I think he really enjoys spending time with us. (Those of you with teens understand the enormity of that statement)! We are very proud of the person he is becoming. Much to Kate’s pleasure he has always treated her just like his little sister. When she was going through chemo, he still teased her and gave her a hard time as he had before, I know she loved this, as being treated different always made her mad.

Kate is someone who I am incredibly proud of. She was sunny and positive while going through treatment, fought hard to get all of her strength back after her surgery, and now has embraced the fact that she is a survivor. I t would have been easy to get past all of this, and return to her old life of being a kid; instead, Kate has become passionate about fundraising. She wants to help others who are facing the diagnosis of Sarcoma.

Kate became involved with the NW Sarcoma Foundation almost four years ago at the first Hike, Bike, or Trike. I had stumbled across their web site looking for more information about sarcoma and was thrilled with all of the information the web site had available.

We were lucky with Kate’s outcome; I now realize how important it is to seek out a Sarcoma center of expertise as so many sarcomas are mistreated initially by general surgeons due to their rarity. I was also happy to learn of this wonderful community so nearby that was offering support and trying to make a difference in the lives of sarcoma patients and their families. Kate sent out an email to all of her friends and family, she formed a team called the Sarcoma Slammers, and had 22 people join her for the walk, all wearing white hats. She raised $5300 for the Foundation her first year and raised $6100 last year. Most importantly she came away with a sense of doing something really important to help others still battling this disease.

I know that we will always remain involved; supporting others who are newly diagnosed and “fighting the fight” with the direction and guidance provided by The NW Sarcoma Foundation.

2008-04-19T04:46:00.001-07:00

Georgetown University Medical Center researchers in Washington, DC have discovered a hopeful development specific to Ewing's Sarcoma. They have found a molecule that that interferes with the changes in DNA that can cause Ewing's.

Researchers are hoping that this newly identified molecule will be effective enough to become part of the first targeted therapy to treat Ewing's sarcoma. This is very big news!

About 500 cases of Ewing's are diagnosed each year in the United States. I don't know the statistics for other countries and it makes me wonder what the total for the world might be. Treatment involves a combination of five different chemotherapy drugs. In the past it was a deadly disease with a very small percentage of survival of about five to ten percent. Presently the figure is more like 60 percent to 70 percent of patients survive over time, but many experience permanent lingering effects from the chemotherapy.

Mostly children and young adults and can get Ewing's, but there are known cases in adults,too. Liddy Shriver had Ewing's Sarcoma when she was in her forties.

Considering that it is a rare cancer with about only 500 cases per year, it surprises me that in my own personal acquaintence there are two girls who have recently been diagnosed with Ewing's.

The older girl, about 14 years old, is a member of the church where my friend attends. (Incidentally, my friend's daughter, Ambriel, was diagnosed with Chondrosarcoma at age ten.)

The younger girl is age 5. I held her in my arms as a newborn. She is the godchild of my daughter. Living in Tennesee, she is too far away for us to visit her, or be there physically for her mother, who is attempting to hold down a full-time job while getting her little one back and forth for treatment. She has other children, too. Fortunately, her husband is able to be there for them while their sister and Mommy are not at home.

Most people do not realize the significance of a Ewing's diagnosis. These days a lot of cancers can be quickly treated with surgery, chemo or radiation. But, Ewing's needs to be treated with a miminum of ongoing chemo. Not just one kind of chemo, but five different ones. Then, there is often radiation, before there is even the opportunity for surgery. If this doesn't put it in complete remission, then more treatments and a much more drastic surgery including amputation.

Sometimes I am grateful that I "only" had Chondrosarcoma, and "only" had surgeries, and "only" had no chemo or radiation long term effects.

Oh, yes, I forgot to mention. When people receive chemo or radiation, there are unavoidable long term effects. Did you know that? If you survive your treatments, if you survive your cancer, the rest of your life will still be affected. But, what choice do we have in this situation. Contrary to popular beliefs, there are no "alternative" so-called "natural" treatments that can take the place of correct treatment for Ewing's. If there were it would make bigger news than this molecule. (I wonder what they named it?)

When we go to the doctor and receive a prescription, we learn that there are known "side effects" of taking the drug. Whatever that drug is, we decide that the small possibility of headaches or dizziness (or whatever) might well be worth it. And so we take the medication.

With chemo and radiation it is not so much a possibility, it is more like inevitable.

To quote from the article I read in the Washington Post:

"I think this holds really wonderful promise as a unique way of targeting fusion proteins," lead investigator Dr. Jeffrey Toretsky, a pediatric oncology physician and researcher at Georgetown University's Lombardi Comprehensive Cancer Center, said in a prepared statement.

"People thought it wasn't possible to have a small molecule that can bind between flexible proteins, but we have shown that it can be done," Toretsky said.

He noted that the study was conducted in laboratory cells, so further research is needed before the molecule can be tested in humans.

The study was to be presented Sunday at the annual meeting of the American Association for Cancer Research, in San Diego.

2008-04-16T21:22:00.000-07:00

I received an email from a young lady whose mother I have been acquainted since her daughter was diagnosed. It follows here:

Dear Family and Friends,

A few nights ago, I began to think about what my life was like almost five years ago. Around this time, I was a fourth grader, enjoying school, making friends, having fun. I had just been asked to join the gymnastics team at the gym I went to and life was looking up, especially with summer so close.

But then there came that night. I was having a sleepover with one of my best friends, still to this day, Becky. We had been talking and laughing about who knows what the whole night. But simultaneously I had felt something on my upper right leg that didn't feel right. I continued to poke at it the whole night, and finally asked her if she had the same thing on her leg. Of course, she didn't.

Becky became worried, and told me to tell my mom. So I did. At first, she thought nothing of it. She assumed I had hurt it and it was just a welt, which is the explanation for most Sarcoma patients at first. But within about two weeks, this "welt" had doubled in size.

My mom rushed me to the doctor, who rushed me to the hospital, and from there on out, my life became a blur of missing school for x-rays, MRIs, Cat scans, bone scans and every kind of test imaginable. After my biopsy, it was confirmed. And you know the rest of the story.

My life has never been the same. and it is not often that I think about my cancer, and how awful the whole experience was, but when I really do, I realize how important it is that I help in any way possible. The Hike, Bike, and Trike is a perfect way for me to continue to raise funds and make a difference.

This year, although I know I haven't given much notice in advance, I want to fight extremely hard to raise money.

For all of you that have donated, thank you very much! Your support will go to help fund support and research for Sarcoma.

If you have yet to donate, please, please help out and send in your checks. The deadline is April 26th, so we need them in ASAP!

You can also donate on line at www.nwsarcoma.org

Be sure and put my name under the comment section. Kate Van Nice

Also, we are still looking for more team members! So if you would like to join our wonderful team please contact my mom at: 4boarders at comcast dot net

Love and hope,

Kate

2008-04-14T01:56:00.000-07:00

Why Bone Cells Colonize Glass Scaffolding

ScienceDaily (2008-04-12) -- Why do bone cells colonize glass scaffolding? One researcher says it's like seeding a fishing environment by throwing an old Christmas tree into the water. The submerged tree provides good pockets of cover for all kinds of fish. But this isn't really a discussion about aquatic habitats. The scientist is trying to explain why human bone cells would want to colonize medical scaffolding made out of glass fibers. "Nature abhors a void," he says. "And the body likes certain kinds of glass.

To continue, go here.

2008-04-09T16:24:00.000-07:00

The Team Sarcoma Events are just around the corner. In part of gearing up for it, a special Team Sarcoma Weblog has been created so that anyone can visit, and see the events as they are announced. If you have a weblog or website, please consider adding a link to the Team Sarcoma Weblog. This will help us to spread the word.

2008-03-11T21:29:00.000-07:00

There is now a page on the Team Sarcoma website describing how to form a local Team Sarcoma.

AND FINALLY!!!!! !!!

Team Sarcoma T-Shirts and Sarcoma Knows No Borders bracelets

Mary Sorens of the ABC Survivors group has given Team Sarcoma a Store Front on Cafépress where you can order Team Sarcoma T-Shirts which she designed in a variety of styles and languages!

A $5 donation to sarcoma research which will be administered via the Liddy Shriver Sarcoma Initiative's Research Grants program is included in the price of each T-Shirt.

This page also describes how to obtain the Sarcoma Knows No borders bracelets.

The more Team Sarcomas there are, the louder the collective voice. Let's get over 5,000 people involved in the 2008 Team Sarcoma Initiative!

There is strength in numbers.

2008-02-08T11:52:00.000-08:00

Three girls affected by Sarcoma. How will it affect their lives?

The one with her feet up in the air has a Daddy with Chordoma, a rare form of sarcoma, which up until recently was considered to be "benign" by the medical community. With many surgeries and recurrences located in the base of the spine, sacrum, cervical spine or skull base, those with Chordoma have had little hope for cure. Not all, but a certain percentage of Chordoma patients have inherited their cancer from their parents.

The girl in the blue has had her childhood marred and interrupted while her little sister went through spine surgery, radiation and chemo. How does it affect a six year old to be left out of the loop, so to speak? Her parents and sister going off to the hospital all the time. Her little sister in pain, being nauseated, going bald, getting, (what seems to her), all the attention. And, it is not over when little sister has to keep going back to the doctors and hospital for many follow up appointments, for repeated fearful anxious days as everyone awaits the news whether there is a recurrence or not. What's it like to have little sister still having pain for the rest of childhood?

The littlest one had her placental umbilical chord frozen to keep until such time as her big sister, (not shown) might need a possible chance at survival for her Mesenchymal Chondrosarcoma. She doesn't know what an important part she has played in the life of her family. Right now there is no stem cell cure available for that very, very rare bone cancer.

Hopefully, her big sister will never need it. But, who knows what the future will bring?

2008-01-24T00:14:00.001-08:00

How many types of sarcoma are there? Good question.

I could say the answer is unknown, and I suppose that is officially true. The question has bothered me for some time and I set out more than once to learn as much as I could.

I came up with a list and shared it with some friends. Later, I misplaced the list, somewhere in the storage banks of my computer. Today I noticed it and decided to post it before I forget and lose it again.

This is the list as it stands at the moment

2007-11-19T23:12:00.000-08:00

One may not think of Testicular Cancer as a form of Sarcoma.

Seminoma is the name.

For any man reading this, PLEASE regularly examine yourself for any signs of a lump on the testicle. We see all kinds of reminders in our daily lives for women to check themselves, but men need to be aware of their possible health issues.

If you find a testicular lump do not wait to see if it changes. Get yourself to a Urologist immediately and have an ultrasound (completely painless test). It's not time consuming. It's not invasive. If it's not Seminoma, then you have the assurance you need. You wont have that lump continually haunting you in the back of your mind. Or just trying to ignore it.

If it does turn out to be Testicular Cancer and you have caught it early, it is quite curable. Surgery and a few weeks of chemo, and that's it. You're on with your life.

Like I said, regular self-exam and a quick visit to the doctor. Don't wait, and insist on an appointment as soon as possible. Catch it early. It's curable.

If you are under age 30, this is imperative!!!

For any women who may be reading this, tell the men in your lives.

If you have read Lance Armstrong's book, "It's Not About the Bike", then you may be thinking that he had Testicular Cancer and he didn't have an easy cure. That's correct.

For those who haven't read the book, Lance said he didn't give his symptoms much thought at first. Then, he felt that other things were more important in his life, and he could get to the issue later. In the meantime it grew very large and painful before seeking help. By that time it was quite aggressive - to a stage 4, which means it had moved out of the tumor itself and spread to other parts of his body.

Lance Armstrong is a very lucky man to have survived.

2007-11-17T15:19:00.000-08:00

A number of people have been asking for details about the 2008 Team Sarcoma Bike Tour which is part of the 2008 Team Sarcoma Initiative. You may know, it is an internationally coordinated set of events to raise awareness of sarcoma and raise funds to support sarcoma research, clinical trials, and patient and family services.

Those who have been on one of the Team Sarcoma Bike Tours can tell you what a very special week it is.

The 2008 Initiative consists of the "core" Team Sarcoma Bike Tour (which will be held in Germany and Austria biking along the Danube River from Passau, Germany to Vienna, Austria during July 12-19, 2008) and various local Team Sarcoma events that will be held worldwide during the same week.

Here is where you can learn more about the Team Sarcoma Bike Tour.

If you would like the multi-page (more detailed itinerary), please send a request to Bruce Shriver by an e-mail message to info@liddyshriversarcomainitiative.org

Each day, team members have a choice of three programs: one designed for strong cyclists, another for leisure cyclists and the third for those who would prefer to walk or hike.

2007-11-12T15:29:00.000-08:00

More History of Sarcoma
In the 1800's, Sarcoma was a known medical entity. I have mentioned before about my curiosity in this subject, (I just find it fascinating) and recently, did a search of old newpaper archives online. The full page is digitally copied and presented for example, but totally unreadable. So excerpts of the articles were transcribed by OCR technology which produces garbled text. (Typeface fonts were hard to read back then, even to the human eye.) I have attempted to discern what I can from the following articles.

1810
March 13 - Edinburgh Advertiser
A medical book, "a handsome pocket volume", was being offered for sale. Mention is made of the Antiquarian and Chirurgical (surgical) Society, and the "Practical Directions for the Management of Cancer", with SARCOMA listed in the Index.

1829
August 08, The Sandusky Clarion, (Ohio) ,
Dr. Wilson placed notice (advertisement) encouraging others, "who may unfortunately be in need of any similar assistance", discussed his expertise in the disease designated an osteo-SARCOMA in which was an enlargement of lowerjaw bone."

1838
March 15, Alton Observer
The Degree of Doctor of Medicine was conferred upon the following individuals and a paper on Medullary Sarcoma was presented by John Evans.

Enalns AL on Blood Letting
Edwin H. Davis, on Electricity as Cause of Epidemics (as in weather electricity)
EK Dayton, on Blood letting
John Evans, on Medullary SARCOMA
Elia Garat, on Acute Gastritis
John If, the Blood
Edward Kimball, on Arachnilios" (spiders?)
Joseph Redhead, on Lesions of the Pleura
John A. Fating, Relations of the nervous and vascular systems in Intermittent Fevers

1879August 29, The Decatur Daily Review
At Carrollton, Mr. H Dowdall died under a surgical operation. For nearly a year the patient had suffered from osteo-SARCOMA, resulting from the fracture of the thigh bone. Dr. Younkin, a surgeon of St. Louis, operated upon the case. The patient bore the chloroform and operation well until he began to come out of the anaesthetic, when he immediately sank and died.

1881
November 18, Fort Wayne Daily Gazette
Osteo-SARCOMA, by Dr. Stemen, presents an interesting case which came under his practice.

1884
April 24, Indiana Weekly Progress
A post mortem examination, made on Sunday conducted by four doctors, developed the theory that the disease was SARCOMA or tumor combined with or producing softening of the brain.

1885
January 19, - New York Times

A NEW CANCER CURE: EXPERIMENTING WITH A BRAZILIAN REMEDY KNOWN AS ALVELOZ

The story of the Cundurango (Brazil) cure for Capt. John A. Duble, of the District, has been treated for a cancer of the face (Epithelioma) with an application of "alveloz," a Brazilian remedy.

May 07, - Cambridge Jeffersonian
"A cancer, of whatever kind, is always malignant. Though hard cancer, of which an epithelioma is one, is not so malignant as a soft cancer, in which the cells preponderate over the fibrous tissue. What is now called SARCOMA, which was once thought to be a cancer, is a benign tumor generally, but may be malignant. It differs from a cancer mainly in having its cells separated from other by intervening substance. In the latter the cells lie against each...."

June 10, - Newark Daily Advocate
"...patient's cheek gradually assumed a black appearance. In several places small pieces of bone could be felt where the jaw had become affected and had thrown off sharp splinters. After a careful examination the disease was diagnosed as a SARCOMA, or cancerous growth of a malignant type. Internal treatment did not check the progress of the cancer and the patient consented to risk a surgical operation, though he was told that the chances were all against him."

2007-11-11T13:21:00.000-08:00

I received a message recently from my friend Mimi, who has appealed to the greater Sarcoma Community, (all those groups and organizations who have formed due to this rare form of Cancer). Mimi is the Moderator for the Mesenchymal Chondrosarcoma Support Group on Yahoo. She works tirelessly on behalf of her members as well as through the other groups helping to disseminate the latest of research information and connects people up with sources they didn't know were available. As a group moderator, I know what a tear in the heart it can be when one of your "own" succumbs to the disease. So I can relate to Mimi's request for taking a moment here. This is her message:

The Mesenchymal Chondrosarcoma Support Group is small. Unfortunately, the names of those who were struck down by this cancer are many. Please join
me in remembering them.

IN MEMORY
Mesenchymal Chondrosarcoma Warriors

Sylvia S
Jeremy D
Voitek
Elsie C
Xu, Yulian
Tim Hill
Wendi J
Tiffany R
Lisa W
Andrew Wreghitt
Scott Stafford

Jonathan Chelliah

Jacqui C

Mike Hauenstein

Ty Cheverier

Dr. Zheng-yu Peng

David

Kokjohn

2007-11-04T01:43:00.000-07:00

I get frustrated where sarcomas are concerned because it seems that little progress has ensued over the generations. Though, I am sure, perhaps on the molecular level there are strides as any scientist will tell me. However, still no definitive cure in sight. Bone tumors capture most of my interest simply because I was born with a plethora of them. I have Multiple Hereditary Exostoses, otherwise known as Multiple Osteochondromas. That means I have many cartilage bone tumors all over my body. One of them mutated into a form of bone cancer called Chondrosarcoma. Since my diagnosis in 1967 I have sought answers, and have waited for science to come up with a cure. Here we are 40 years later and, well, no cure. Sometimes it seems to me that nothing is new in the world of bone cancers and sarcomas. To illustrate my point, I spent some time researching a little history of chondrosarcoma. This is some of what I gleaned from various sources:

Hippocrates had a special interest in bone tumors. One of the things he said, "What cannot be cut out, can be burned". (Hence, with tongue in cheek, I suggest the concept of RFA was born.)

1850
Dr. Langenbeck reported on a complete scapular resection for a cartilage tumor. (Guess what? We are still performing this type of surgery today.)

1867
Rudolf Virchow (considered father of modern pathology) recognizes primary bone tumors such as fibrosarcoma, myxoid sarcoma, osteosarcoma and chondrosarcoma as more rare than tumors metastasized to bone. (Yes, and they are still considered rare today. A blessing I suppose that many people do not have to suffer from them. A curse, on the other hand, because little research funding is put to finding a cure.)

1876
Dr. Hinds introduced "scraping" for palliative treatment. (What amazes me is that a big clinical trial for this sort of treatment for Chondrosarcoma has been going on for the last couple years. Did someone forget it had already been done? Yes, I am admittedly a bit cynical.)

1879
Professor of Surgery, Samuel Gross, published "Sarcoma of the long bones..." stating those which form a matrix (osteosarcoma and chondrosarcoma) metastasized to the lung, and much less commonly to the lymph nodes. Because of aggressiveness, he recommended amputation as the treatment of choice. (And amputation is still a treatment option. (Though, I must be kind, not the only method these days. But, it is still used more than I would like to see, especially where hemipelvectomies are concerned!)

1905
Dr. William B. Coley was impressed with how effective radiation was with aggressive osteosarcoma. (Yes, you guessed it, still doing this today. I so much would wish they would come up with something better after all this time. Don't you?) Coley is famous also for his fever cures cancer theory and used bacterial vaccine to create it. Fascinating, authentic article about it here.

1912
Dr. A. H. Tubby becomes aware there is a difference between primary and secondary tumors, as well as benign and malignant in relationship to exostoses and chondrosarcomas. (I kid you not. That's his name.)

1924
Dr. Joseph Bloodgood suggested curretage, phenol wash, and autograft as acceptable treatment option for Giant Cell Tumor. He also developed the Bone Tumor Registry. He also suggested the name myxoma for what was probably a myxoid chondrosarcoma. (Again, there's that curretage, though I'd rather have clear margins.)

1930
Dr. Phemister clarifies a distinction between chondrosarcoma and osteogenic sarcoma. This classification was not accepted and approved until 1942! (What took them so long?)

1931
Dr. Warren shares information on a patient with a vascular chondrosarcoma who had a blood clot go to the lungs. (I had a pulmonary embolism after one of my surgeries. You think with all this forwarning there might have been some way of watching out for that possibility, or maybe even preventing it. Okay, I am grumpy about this one.)

1941
Dr. L. Mayer declared a chondrosarcoma patient cured five years after chondrosarcoma resection. ( I wonder what he would have said of my seven recurrences over eleven years and late lung mets another eleven years after that?)

1942
Jaffe admitted: To make a diagnosis of chondrosarcoma on a histologic basis alone is often difficult if not impossible... hardly any studies which adequately indicate distinctions or transition stages between benign and malignant cartilage tumors of bone on a histologic basis alone. (This is true today. And sadly, many of the chondrosarcoma patients in my Chondrosarcoma Support Group have had the unfortunate experience of having been misdiagnosed for this same reason.)

1943
Two pathologists published the rules of recognizing chondrosarcoma as it's own entity, a bone tumor, and established the difference between central (arising from enchondromas) to peripheral (arising from osteochondromas) At that time, they knew CS developed in those who might have a solitary benign tumor, MHE, or Ollier's. They also knew that CS could be the result of irradation. The only treatment for CS was amputation.

1950
Amputations could be modified with the "turn about" procedure as designed by Dr. Van Nes, though not applied to sarcomas until 1982, whereby The foot became the substitute for the knee joint. (Gosh, and I thought this was something new developed in the 21st century.)

1959
Dr. Dahlin noted that those with pelvic chondrosarcoma were more likely to develop metastasis and did poorly. (I'm guessing it was because the only way to diagnose was with palpation and X-ray, then surgery. Unfortunately, full hemipelvectomy (half the pelvis, including the leg) were amputated.

1959
Mesenchymal Chondrosarcoma finally recognized as a different entity from conventional Chondrosarcoma.

1964
By this time scientists were able cause chondrosarcoma to grow in a rabbit by giving intravenous Beryllium, (presently used in nuclear weapons, by the way).

1967
An internal Hemipelvectomy was performed by Dr. Eugene Mindell, of Buffalo NY. The patient eventually was able to walk again. Though there were many recurrences the patient survived many years. (I can't say this was a first, but it was for me.)

1973
Still, the most common treatment for chondrosarcoma was amputation, unless the lesions were small or easily accessible.

I suppose I should have sited my sources now that I realize I didn't. Duh!

Well, I stopped putting this info together at 1973 because it was four o'clock in the morning. To be continued.....

2007-11-03T06:05:00.000-07:00

A snake sarcoma article caught my eye one time. It was about a corn snake that was treated with chemotherapy for Sarcoma. (I think it was Ewings).

Now, I ask you, chemotherapy for a snake? What kind, and what dosage? Did the disease go into regression? Was it cured? Did the snake survive?

Shown to the left is a fellow being embraced by a friendly Boa Constrictor. Though the Boa in the picture, to the best of my knowledge does not have a sarcoma, this link will take you to the the article about the one who does.

Other reptiles get sarcomas, too! (even a crocodile.) Upon further reading, I also learned that, in the case of snakes, research has shown that their sarcomas are caused by viruses!

I knew about rat sarcoma virus. So, now I wonder how it is known they are caused by viruses. Does that human sarcomas also caused by viruses? I read all these articles that do not suggest it. Is anyone studying this possible cause in direct relationship to humans?

Speaking of Snakes and Sarcomas:

In Wirral, UK and youth named Nathaniel Fletcher needed a whole body scan because he has Clear Cell Sarcoma. His parents are members of a local motorcycle club, who arranged a reptile show charity event fund raiser with the Wirral Herpetological Society.

The National Health Service only offers Nathaniel and other children like him a partial scan on a yearly basis. Since Nathaniel's parents see the need for a full scan for their son, they saw the necessity of holding the fundraiser. A scan costs £750 if a person wants to pay for it himself. The event was "hands on" where those interested had the opportunity to touch and hold the snakes of all sizes. There were spiders, lizards and also owls. The event raised £534.

Some other articles of interest regarding reptiles with Sarcoma:

Monocytic Leukemia with Tissue Metastases in a Bearded Dragon

Undifferentiated Sarcoma in Western King Snake

Hemangiosarcoma in Corn Snake

Melanoma in Marsupials, Bird and Reptile

2007-10-30T00:44:00.000-07:00

Halloween is here, and I am reminded of Kelly. Every year she decorated the house inside and out. She loved shopping with her Dad, choosing a pumpkin, sometimes two, and bringing them home so they could carve them up while Mom toasted the pumpkin seeds in the oven. Every year she planned ahead for her costume. Kelly loved Halloween!

Kelly had never worn a store bought costume as her mother, Gwen, was so creative with the sewing machine. Mother and daughter planned out a new costume every year. One time Kelly was Princess Leia, another year she was a ballerina, the next, a cat, and the next time Kelly dressed as Batman. That was a difficult costume to make. The year before last, she missed Halloween completely, though Kelly joked that she was dressed as a patient. She had been in the hospital very ill with the effects of her long time battle with Osteosarcoma.

She didn't quite miss Halloween entirely, though. The nurses dressed up, decorations were on the wall, even candy was distributed, and Dad brought a small carved pumpkin. But, it was not the same as answering the door when just before sundown handing out candy to the little kids. It was not the same as wearing her own hand made costume. It was not the same as going out later to go trick or treating with her friends.

So last year, Kelly wanted to make up for the previous year. When she began in early September to talk to her mother about making a new costume, Gwen worried. Would Kelly make it to Halloween? The doctors didn't think so. Though Kelly had been in remission for a few months, and her hair had grown back in, the bone cancer had already taken over her daughter's body again, and this time the metastasis was everywhere. There was nothing more the doctors could do.

In a way, Gwen admits she was a little bit relieved that the doctors didn't continue to try to force any other drugs through Kelly's veins. She had seen too many parents pushing for a last ditch effort. She says she wanted her daughter to have a chance to just "be".

Gwen’s heart felt like it had been ripped out of her ever since the diagnosis had been made. But, as summer began to burn out, so did Kelly. So much pain, so much suffering, her daughter had grown so thin. She just couldn't watch her child continue to suffer like that anymore. Every moment, every day, every minute, every breath that Kelly took, Gwen was right there breathing it with her. Gwen had left her job to spend whatever time Kelly had left.

Kelly's Dad knew the only thing he could do was to keep working to keep a roof over their head, to maintain the medical insurance which barely covered Kelly's medical expenses. Neil lived with a certain amount of guilt that he couldn't be there with his wife and daughter. Neil felt that being separated from his little girl when she needed him was almost worth it, though, just to see the joy on her face every evening when he came home.

Regardless of the doctors prognosis, Gwen sewed the Angel costume Kelly hoped to wear. “Kelly wasn't oblivious of the irony of her costume choice. “Barb says, “She knew her time was short. We’ve never hidden anything from her. Maybe it was a symbolic expression of her faith that she would soon be in heaven. I never thought to ask her. I just wanted to make her happy. I would have done anything she asked, though she seldom asked for anything.”

Right from the beginning, when Kelly’s leg hurt her so much, and visits to the doctor ended up in scans and tests of all sorts, Kelly wasn’t the kind of child who behaved fearful and tearful. “Right from the day when we learned the diagnosis. Kelly acted so grown up, asking the doctor questions we never thought to ask. She went through her first surgery to remove the tumor and chemo more bravely than her mother and I.” Neil says.

Within 18 months, the bone cancer recurred and it became necessary for amputation of Kelly's leg. She was very much a part of the decisions to be made. Gwen had cried while Kelly comforted her. "Mom, it's only a leg. Besides I was never good at ballet. Remember?"

Kelly's successfully completed Physical Therapy with her new leg. One could look at Kelly walking down the street and never guess of her medical history at that time. Finally, the nightmare seemed to be over as her health returned. Kelly was wise beyond her years. Cancer seems to do that to kids. In the playroom in the hospital kids occasionally talk with one another about what is happening to them. But, mostly they play. And sometimes they lay in the hospital bed looking clear as a diamond, while blood products drip into their veins to repair the damage done by the poisons meant to kill their cancers. And then the time comes when nothing more can be done, and the parents take their child home to live out their time, as Gwen and Neil did.
They set up a hospital bed in the living room facing towards the big picture window giving a view of the front yard and street. Sometimes Kelly counted the falling leaves and when Dad came home she asked him to bring in a few. That was about the time that Neil went out to the garage, dug out the Halloween stuff, decorated the yard with Frankenstein, and spider webs. He brought in a pumpkin and carved it at Kelly’s bedside as she gave directions.

Halloween night, the children came to the door to shout “Trick or Treat!” and stared in awe when they came in to collect their candy from the beautiful angel quietly smiling at them from the bed all decorated to look like a cloud.

Gwen and Neil couldn’t bring themselves to remove the Halloween decorations even as the snow covered them. Kelly had lasted another two and a half weeks.

2007-10-22T22:28:00.000-07:00

October 22, 2007

New Initiative Funds Rhabdomyosarcoma Research

The newly established Miles Alpern Levin Initiative for Rhabdomyosarcoma Research is funding research into the development of new treatment options for patients with recurrent rhabdomyosarcoma (RMS). The Initiative has been funded through a $1 million commitment in memory of Miles Alpern Levin, thanks to the generosity of Dr. Nancy Alpern Levin and her parents, Robert and Marjorie Alpern. It will support the collaboration between Dr. Leonard H. Wexler of Memorial Sloan-Kettering Cancer Center's Department of Pediatrics, and Dr. Neal Rosen of the Sloan-Kettering Institute (SKI).

RMS is a fast-growing tumor which accounts for about half of the soft tissue sarcomas in children. Sarcomas are cancers that develop from connective tissues in the body. RMS is a cancer made up of cells that normally develop into skeletal muscles. Any muscle in the body may be involved. For patients whose tumors recur or whose tumors have spread to other areas of the body, Memorial Sloan-Kettering is leading efforts for innovative treatment strategies, including novel combinations of chemotherapy agents, radiation therapy, and surgery.

Dr. Wexler is an internationally recognized expert on the treatment of rhabdomyosarcoma and Dr. Rosen is a premier translational researcher with special knowledge in the area of mTOR pathway inhibitors.

By collaborating, these researchers are seeking to develop new, biologically targeted therapies for recurrent rhabdomyosarcoma. The most promising of these approaches is targeted therapy against the Type 1 Insulin Growth Factor Receptor (IGF-1R) and its downstream effector pathways. Preclinical research has shown that this agent is singularly effective against RMS, and plans for the drug's continued development would be to combine it with a mTOR pathway inhibitor, or with chemotherapy, or both, and to begin planning for clinical trials. This is brand-new territory in therapeutic drug discovery, and it is hoped that the collaboration between Drs. Rosen and Wexler will offer new treatment options to patients and generate considerable excitement in the pediatric sarcoma medical community.

The late Miles Alpern Levin, son of Dr. Nancy Levin and Mr. Jonathan Levin, and a grandson of the Alperns, inspired the family to make this philanthropic commitment though his own battle with rhabdomyosarcoma, to which he succumbed on August 19, 2007. Since he was first diagnosed with RMS in 2005, the 18-year-old wrote about his experiences as a cancer patient and published the pieces through a web blog. Mr. Levin reached thousands of online subscribers worldwide with thoughtful musings on life and hopeful messages such as "Keep Fighting, Stop Struggling

2007-10-21T00:18:00.001-07:00

Do you associate certain colors to a season?

Does October bring up black, orange and maybe a ghostly white?

Or does October come up pink for you?

Why Pink?

October is Breast Cancer Awareness Month.

Aside from all the Halloween colors in the stores, and the first blooms of Christmas, you are likely to see a lot of Pink. Pink T-shirts, pink phones, pink shoes, socks, purses, baseball caps, pens... pink jewelry of all sorts. You name it. I've got several articles like that, all with a little breast cancer pink ribbon insignia somewhere on it. Not because I have breast cancer, not because a family member does. Where ever you look, the stores have displays of these items. The package inserts state that a portion of your purchase goes to Breast Cancer Research.

Are you thinking I am way off base to be writing about Breast Cancer on a Sarcoma Blog? It's true that most Breast Cancers are Carcinomas. Sarcomatous Breast Cancers are rare, but they should not be ignored, or forgotten.

Cystosarcoma Phyllodes

Primary osteogenic sarcoma of the breast

Solitary neurofibroma in the male breast

Desmoid tumor of the breast

Adenomyoepithelioma of the breast

Chondroid Carcinoma of the Breast

Metaplastic carcinoma with chondroid differentiation

I recall when Jeff first contacted me about his wife's Chondrosarcoma of the breast. I thought, perhaps he was confused. I certainly was. I had never heard of such a thing. But, I had never heard of Chondrosarcoma before I was diagnosed with it, either. I just couldn't imagine cartilage tissue growing there. So, I asked a lot of questions trying to pinpoint why he thought his wife had Chondrosarcoma of the breast.

Jeff had dedicated a great deal of time and energy learning what he could about it, and believe me, there was very little information at the time, (and probably little more than that now). Fortunately, his wife was in the hands of an excellent team of Oncologists at one of the top Cancer Centers, Memorial Sloan Kettering. If anyone could verify such a rare diagnosis they could.

Jeff's wife held out for a very long time, but finally, the day arrived when she could no longer find a cure and faced the inevitable. Through the years of her struggle, I learned what a very special woman she was, and marveled at her husband's commitment to find whatever methods he could in order to help her.

I have never known anyone, personally, who had breast cancer. So, she's my idea of the "breast cancer woman" role model. No one ever wants to have that kind of identity, I am sure, but when I put on my pink breast cancer awareness pin, or socks, or cap, I am always reminded of Jeff and his wife, and wonder if any of the donations for breast cancer go to that one small percentage of Breast Cancers called that fall under the category of Sarcoma.

2007-10-08T19:49:00.000-07:00

Most people think that Ewing's Sarcoma is a kids cancer, if they know about Sarcomas at all. Imagine the disbelief of Mia and Drew when the Doctor told them that Drew had Ewing's in his pelvis. Needless to say they went for a second opinion at University of Chicago hospital.

Drew felt so discouraged not only with the diagnosis but with the treatment. It was not as simple has he had thought. After all he was a pretty tough guy working as a fireman. He figured he could manage surgery, chemo and radiation if they were necessary. And what's a little hair loss, anyway?

But, Mia was beside herself to hear her husband say that he couldn't take much more of being so sick with the chemo only after having reached the halfway point. Drew wanted to give up. The doctors had tried numerous drugs to control his nausea symptoms, saying that sometimes a patient just doesn't respond well, where others seem to handle it easily. There's no telling why the differences.

Drew was also receiving radiation at the same time. He was so exhausted and weak. No wonder he was so discouraged. Drew felt ashamed that he was being "such a wuss" as he called it. He couldn't help but to compare himself to all the children who were receiving the same treatment for their Ewing's. How did they manage it? He wondered.
Mia had a hard time trying to keep a positive attitude and to keep Drew's spirits up. She really wanted him to understand their was a light at the end of the tunnel, and he could get his health back. If only she could get him to hang on and not give up.

Fortunately, about this time, the doctors hit upon a combination of medications to help Drew keep his food in his stomach where it belonged, and the other meds he was taking were now being properly absorbed. Mia was so happy. The anti-depressants Drew needed so badly a month before were now helping him to be more his old self.

Still, Drew had problems even wanting to eat. Things just tasted so funny, it was hit and miss. Finally, they were able to discover with a lot of trial and error, that Drew could tolerate toast, tea and canned pears. That got him through the rough spots. "I don't know what I would have done without her." Drew says. "She was so patient cooking one thing after another to have me try them."

Pretty soon Drew's appetite improved and he could begin to enjoy food again. Unfortunately, another complication came along to spoil the moment. Mouth sores. "Why doesn't anyone ever tell you to expect these things ahead of time, so you can make plans?" asked Mia.

Still, Drew sometimes came home from treatments, retired to the bedroom and just curled up with the shades drawn. Then, one of Drew's firefighting friends from work called for the umpteenth time, and Mia couldn't give anymore excuses that he couldn't have visitors. So, Drew's good buddy Matt, dropped by the next day.

Funny how having a friend around can change one's perspective. Soon Matt had Drew laughing about some experience they shared while on the job, and then sat watching sports on TV together. Then, Mia realized that keeping Drew so isolated wasn't a good idea. She decided to invite at least one friend over every couple of days to help her husband to get through all this, and draw him out of his shell.

"We took appropriate precautions in order to protect Drew from getting infection." Mia says, "Once I had organized having friends over, it helped so much to distract us from spending so much time worrying about the struggles we were facing. And it certainly gave me a chance to just take care of myself for a while. I didn't know how much I needed to do that!"

Even though Drew has since been in remission, and continues to have good scans, he and Mia are now involved with the Ewing's online support group. Drew learned that he needed to put that chapter in his life behind him, but still needed to do something constructive about it. Drew feels good to be able to help other adults facing the same issues he did, including a woman of 65 who had Ewings, too.

Drew has returned to his job as a Firefighter and continues to enjoy helping others in that capacity. "Now I can look at things in another way. I am not just putting out fires, rescuing people, but now I understand what it is like to feel so helpless and discouraged. I can now relate, and I think, say the right things to give hope."

2007-10-05T01:48:00.000-07:00

Orville did not go through his diagnosis alone. No, at age 57 his whole family was involved. Eleven years previously, Orville had a exostosis due to MHE removed from his sternum in a quick one day outpatient surgery. He never returned to his doctor for follow up. If he had done this, he would have learned that it was not a benign tumor as originally thought. Orville had better things to do with his time.

Chondrosarcoma is sometimes referred to as an indolent cancer, which means it can be quite slow growing. Orville's original had been a grade 1. So, when he began to have increasing episodes of chest pain that did not resolve with antacids, his family began to worry. His elderly mother, his wife, his grown up sons and daughter, all kept after him to go to the doctor. They feared the worst. They thought, maybe, he would have a heart attack. It never occurred to anyone that he might have cancer. When, Orville finally went for a medical exam and scans with the family physicican, both his wife and daughter were present for the results. Suddenly everyone was in a quandary.

"Cancer? How can that be? He is healthy as a horse! Look at him!" The doctor had to agree. Orville was the picture of good health. All his blood tests came back normal. This is common among those with chondrosarcoma. Unlike other cancers, it is not debilitating. But, the radiologist kept insisting that Orville be referred outside of their community to a University Orthopedic Oncologist in a city four hours away. Orville wrote it off. But, his wife and daughter reported back to the rest of the family. They were frightened by the possibilities. Someone remembered that, years ago, he had a surgery for a benign bone tumor. Soon, they put together the fact that if it was an Orthopedic Oncologist that he was supposed to see, and he previously had a bone tumor, then perhaps this was a bone cancer.

That was terrifying to everyone. "Bone cancer! That's the worst kind of cancer to have!" They all had heard stories of friends of friends or someone's relative having (secondary) bone cancer and dying a horrible death. Unfortunately, these kinds of stories seem to perpetuate themselves without those involved getting the facts. Chondrosarcoma is a primary bone cancer.

One by one each member of the family approached Orville about their concerns. He got pretty angry at the bunch of them for imagining the worse. He was, after all in the best of health. Hadn't the doctor already said so? His heart was good, the pain was probably a strain from working so hard. Why should he take a day off from work to drive all that distance to see a doctor who was going to charge an exorbitant amount of money just to tell him it was another benign tumor, just like before? He didn't have time to have another surgery no matter that it would be a quick procedure. He remembered it had taken a while last time, before he had gotten back up to speed.

His daughter got on the internet and researched all she could about bone cancer. She read website after website, many incomprehensible with their medical mumbo jumbo, and many which promised a cure if the right diet was followed. So, Orville's wife began to change the way she cooked, and hoped for the best. Orville didn't mind the changes. He was having problems with feeling comfortable after a heavy meal, so the lighter fare his wife gave him was easier on him. Little did he know the tumor on his sternum was growing inward and pressing upon his esophagus, and stomach. No wonder he felt overly full after eating.

It wasn't easy for the family to let go of their worry, so they elected Orville's sons to get after him and insist he go to the doctor. After resistance from them, the guys finally agreed to convince their father to go to the bone specialist just to placate their mother and sister.

Everyone had kept the circumstances from Grandma, knowing she wouldn't handle it well, if she even suspected her only son had a cancer. But, the big trip to the specialist was not something easy to hide from her. She was suspicious and knew something was "up".

Orville's appointment lasted three days, while he underwent one test after another, after another. His wife and daughter worried through those days. On the third day, they all met with the surgeon who explained the diagnosis, outlined the surgery, and answered their questions.

On the way home, Orville did NOT want to talk about it! The women rode in frightened silence. The next morning they called other members of the family after Orville left for work, so they could tell them what the doctor said. Unfortunately, it all came out a jumble, as both had understood the doctor in different ways, and no one in the family had ever been sick enough to learn anything medical. It was easy to confuse things. Within a very short time, the facts were askew, and all the family was agitated and fearful. Still, Orville refused to discuss anything with any of them, even when one son found out more about it, and learned some of the good things about the chondrosarcoma diagnosis. Surgery was the only thing needed, no chemo, no radiation. And best of all, it's got a better outcome than most cancers.

Eventually, the day came for surgery. The family had all come along and sat in the waiting room for many hours that day, worrying more and more as the clock ticked away. When the surgeon came out and spoke to the family he explained how the surgery was a lot more extensive than originally thought. In order to have clear margins the whole sternum had been removed, and Orville essentially had to be held together with metal wire, and mesh. The surgeon looked so serious when speaking with the family, they read between the lines, and all believed that Orville's days were numbered.

Orville's recovery was not as easy this time as he thought it would be. His pain levels were more than even he could tolerate, so he took the narcotics ordered for him. He returned home in a week and insisted on going back to work right away. Staying home with the family was not an option.

It was not long before the strain upon the family took it's toll. Grandma knew everything by this time. She became seriously depressed. Orville's daughter suffered panic attacks, and his sons just couldn't hang around. Orville's wife had insomnia and watched her husband's chest rise and fall as he slept the sleep of the drugged.

When it was time to return to the doctor again, the family all traveled together. Orville did the driving. The doctor had some new things to say that no one had expected. Orville's tumor was so aggressive, that it had an osteosarcoma component to it. Even though radical margins had been taken, the doctor advised chemotherapy. The family was stunned. When Orville's wife broke down in the doctor's office, and then, his daughter, he could see that they all needed some deeper understanding of how to cope with the situation.

A social worker was called in who coordinated arrangements to be made for the whole family back in their own community. They attended local cancer support groups for caregivers, and realized how the hysteria had gotten out of hand. They learned that Orville's denial and anger was a common response to a cancer diagnosis. He was able to get counseling, and anti-depressant medication to help him cope. As the surgical pain subsided and Orville's body healed, he began to feel more hopeful that he would survive. After all, that had been the fear that drove him to tell everyone he didn’t want to talk about it. And now, he would keep his follow up appointments for as long as the doctor suggested.

"I still don't like to take time off work. It is so satisfying to me. But, I realized that you only have one life, and this has made me look at it in a whole different way," Orville says. "Just like they say, I have a new lease on life! Now, I take time to be with my family more than before. Life is for living, not just working! And, you know what? I’m actually enjoying life a lot more now, too."

2007-09-29T01:22:00.000-07:00

Greg was born with MHE. ( Multiple Hereditary Exostoses )It wasn't much of a problem, though, he did have surgery to remove a "Calcium Deposit" from behind his knee when he was seven. (Note:Benign cartilage tumors, are NOT calcium deposits.)

At age 34 Greg noticed that one of two "deposits" on his rib cage (which were always large) started to get sensitive and seemed to be growing. Since it had always seemed large, he didn’t pay much attention to it, or, perhaps "just blocked it out of his mind", as he says. He believed that once you reach adulthood, that MHE tumors do not grow anymore and you don't need any surgery. It wasn't long before he learned otherwise.

It continued to grow and be sensitive. The aching toothache-like pain in his ribcage was most noticeable when he was out working in the yard. He had just bought a new home and had a lot of ideas about he wanted to create before summer ended. At first he thought the new growth was from too much calcium in his diet. That was an old fashioned myth about the multiple bone tumors held in his family, about how these growths were supposed to have developed. As an adult, Greg admits, he really hadn’t bothered to learn anything new about MHE, But he finally got curious enough because of these new symptoms. So he has searched the web. But, the more he read, the more he says he felt like he was a hypochondriac, and it was easier to just not think about it.

By autumn, Greg realized he still had the annoying symptoms, and couldn’t just explain it away and blame it on his yardwork. He had finished all the gardening he could do for the season. So, he listened to his body, and made the decision to see a doctor. He wasn’t sure how to go about finding one. So he just looked in the yellow pages and picked one listed under "Orthopedic Surgeon”. Fortunately, he found a qualified doctor that knew exactly what he was doing.

By Thanksgiving time, Greg had been through a gamut of tests: xrays, scans, and MRI's. He had thought it would be a simple thing to take care of. Just another one of those exostoses to be removed, like when he was a kid. So, he was very surprised when the doctor explained that he most definitely suspected Chondrosarcoma. The tumor on the front of the ribcage pointed outward, and that was the part that Greg was aware of, but, it was just the tip of the iceberg. That was only one tenth the size of what was embedded on the underside of the ribcage, and pushing against his spleen, and heart. It was imperative that surgery be performed as soon as possible. So, just two weeks before Christmas, Greg had complicated but expert surgery which removed a total of five ribs and the large tumor attached to them. This created a large gaping hole which the surgeon covered by taking a piece of Greg’s pelvis muscle and pulling it upward to protect his inner organs, and held it all together with surgical mesh.

Amazingly, Greg was able to return home in time to celebrate Christmas. One would think that with all that surgical work done on his body, Greg would have a lot of pain and immobility. But, Greg was fortunate that he could manage it all with strong doses of anti-inflammatories. He had bad reactions to narcotics at the hospital, so "non-narcotic" options was the best option for him. As far as Greg was concerned, the biggest pain for him to bear, was the removal of the innumberable staples that held his very large incisions together. What a way to bring in the New Year!

Some folks would probably like the idea of curling up with a good book to ride out the winter months, after such a surgery, take advantage of the time off from work allowed to him. But Greg was more interested in his computer and getting back to work with it. At his age, he was in the best of health otherwise, and able to regain most of his range of motion. So, he worked hard to convince his doctor that he was well enough to go back to work sooner than originally predicted. It wasn’t like he had any hard physical labor to do. That would come in the summer, when he planned out further landscaping of his yard.

The doctor, in his wisdom, told Greg to hold off a little while longer. After all, one of his incisions hadn't healed as neatly as the others. And part of the ribcage reconstruction was still very swollen and puffed out. Greg had to admit that many of his clothes didn’t fit right over that area of his chest. The doctor said the muscle would eventually thin down, and Greg could wear one of those blue neoprene belts over the area. Admittedly, Greg was not too happy to wear such a device, and it took a little time to get used to it. It was a little weird for him on the first day, but he knew he would have to wear it if he wanted to return to work, and feel comfortable with the new bulge not popping out on his chest.

Greg was sorry later, that he had returned to work so early. He had arranged ahead of time with his employer to go it slow and take it easy, but since he didn’t have any obvious outward signs of disability he was soon overloaded with work. Though working at a computer all day may not seem difficult, anyone who has had major surgery such as what Greg experienced needs more time to be able to be productive and still have the ability to give the body a chance to heal.

“Don’t try to convince yourself that you are tough and you can take it,” Greg advises others in this same situation. “Even if you are bored with sitting around doing nothing, returning to work before your body is ready makes it a lot tougher than you ever thought it would be. The word stress doesn’t even cover it!”
But, not one to back down, or turn around and ask for more time off to recover, Greg stuck it through. So, back to working hard, he felt annoyed at himself that he couldn’t lift and carry his notebook computer on his shoulder. He got a few stares from others as he toted it around on a wheeled laptop carrier.

“I kept things low-key at work. I didn’t tell anyone what my diagnosis was and only a few knew I had surgery, but no one knew how serious it was. Maybe I shouldn’t have kept it a secret.” Greg says.

It was a relief to get his first set of post-surgical scans done, and he returned every three months for the first year, then bi-annually, now his scans are done annually, and he continues to be free of any signs of cancer. The doctor also includes tests every two years just to follow up on how his MHE tumors are doing, too.

“I learned the hard way,” Greg says, “It is not over when you reach adulthood. People with MHE should be checked regularly. If I had known earlier, I might not have had such a large tumor or surgery. Woulda', Shoulda', Coulda'..... I'm just grateful that I've come through this Chondrosarcoma experience. I will never leave it behind me, but let it be a lesson to take better care of myself."

2007-09-24T19:45:00.000-07:00

How do you tell your child about cancer?

What do you tell your child when the cancer is there own?

Do you tell him everything will be okay when you know it is not?

How do you tell him why the surgery wasn't enough?

What do you say when it is time to have chemotherapy?

How do you explain what it all means when you don't even know yourself?

How does it feel when your own child knows more about his own Rhabdosarcoma, about his own chemo port, about his own blood counts than you do?

How do you keep your emotions under control when you see your child suffering?

Who can you go to when you realize you have no control over the situation?

How do you deal with the fact that other cancers get the funding needed for research?

2007-09-23T17:42:00.000-07:00

I once was an extra in the film, Eight Men Out. Though I knew nothing of the history the movie portrayed, I knew I had baseball in my blood, and the time period portrayed was exactly the time when my own distant cousin was a Major League player for the Brooklyn Dodgers. I didn't know about him when I was a kid, but as an adult I reasearched the family tree. That was when I learned about Zack Wheat, nicknamed "Buck". Buck Wheat. Get it?

I was happy as a clam to be an extra in the movie. Part of it was filmed in Indianapolis, at Bush Stadium. If you pay attention, you can see me in the bleachers cheering. It was mighty cold that two weeks. My 8 year old son was with me. We were out there every day for about ten hours. Good thing I wore long-johns beneath my costume. We each got twenty dollars a day. But, I digress.

When I was a kid, had I known about my cousin, I wouldn't have had to go through the trouble I did as a kid just to be allowed to play baseball. I lived directly across the street from a circular park that the boys claimed as the best location for their baseball games. As time went by, a diamond formed just from their use of it. The city didn't make baseball diamonds in their parks in those days. Today, a girl can be involved in any sports she wants. Back then, I had to finagle my way to play third catcher. Those boys sure were bad catchers. I soon moved up to second catcher, then earned the privilege of being right behind the batter. Once there, I got to bat, run the bases, and play first base. I LOVED baseball!

Ironically, at the same time I was getting my recognition on the Laughlin Drive Neighborhood Team, (1959) Zack was inducted into the Baseball Hall of Fame! He was included in the books, by Lawrence Ritter, " The Glory of their Times", "The 100 Greatest Baseball Players of All Time". If only I had known!!!

So, when I first learned about Dustin, I could really relate, not only because he and I have Sarcoma in common, but because he LOVES baseball!

So it is with great interest that I have been following his story in the his carepages blog and in the news. This is a kid with spirit. Well, I should say, this is a young man with spirit!

Dustin is 22, the same age as me when first diagnosed with Chondrosarcoma. Dustin was diagnosed in March of this year with stage 4 Osteosarcoma. He immediately began chemotherapy treatment at University of Iowa Hospital, a good place to be if you have a bone cancer. Chemo, of course, has it's side effects, but Justin took it as it came, and stood up to it, like the quote in his Carepage, from a song called "Stand" by Rascal Flatts:

'Cause when push comes to shove,
you taste what you're made of
You might bend 'til you break,
'cause its all you can take.

On your knees you look up,
decide you've had enough.
You get mad,
you get strong,
wipe your hands,
shake it off...

then you stand...

then you stand!

I think the song says a lot about Dustin. He went through weeks and weeks and weeks of Chemo with some pretty nasty side effects. He only just finished last week. And yet during all this he stood up and prepared himself for participating for something else in his life that was more important than letting the chemo keep him down. His family and friends stood together with him throughout all this, too.

By the end of May, the chemo was interrupted, and surgery was performed on Dustin's shoulder/humerus. He had limb salvage surgery, and removal of involved lymph nodes near his neck and under arm. He had only a month to recover from the surgery, then chemo was started again. It really surprised me to learn that Dustin was able to sing while he had chemo sores in his mouth. I get mouth sores from Oral Lichen Planus and singing is not possible. I know chemo sores are way worse. Dustin sang at his school principal's retirement. This is one tough guy! So tough, that Dustin even entered a singing contest.

The Chicago Cubs, (Dustin LOVES the Cubs!) had a contest to sing, "Take Me Out to the Ballgame" during the Ultimate 7th Inning Stretch Competition. Not only did Dustin perform for the competition, but continued to go back for more auditions as he continued to make it as a finalist. All this, while recovering from the major surgery on his shoulder, arm, and lymph nodes, plus his continuing chemotherapy. And sadly, his Grandpa, who taught him everything there was to know about baseball, died in late July. On top of this, the news people got wind of his story and overnight he was being interviewed by TV and Newspaper Reporters.

How in the world did he do this? How could he repeatedly perform his singing? How could he continually talk to interviewers with those sores in his mouth, with anemia and low white blood cells and dehydration, and breathlessness and exhaustion? When did he rest? How could he stand it?

If you take a look at his audition video, you will see that not only did his stand up and sing, but he's definitely got spirit

What a great smile! What a good-lookin' guy. What a voice!

So, today I learned from the news that Dustin won the competition. I cried for him with joy. I cried for his mother, Rose, and sister, Amy, and his friends who have stood by him through all this. I am so happy and excited for him!

They didn't even have time to update his Carepage with the news. Yesterday, just seven days after that last chemo treatment he performed in Wrigley field during the 7th inning stretch. I love it, that the last comment in one of the news article says:

When the stretch came, "he stood up in front of 41,000 people and just nailed it!"

This is a link to the KWWL story on Dustin where they have a video of his performance. I don't know how long they will have it, so take a look while you have a chance.

2007-09-22T14:44:00.000-07:00

A young woman in Scotland, Zoe's her name, died ten days ago. I found the article about her online in the Edinburgh Evening News. She was supposed to participate in a charity fashion show to raise money for cancer. Her mother stood in her place. I have conflicting emotions about that. How could she? Isn't that a little macabre, and unfeeling? On the other hand, how could she not? I admire her ability to stand in her daughter's place when she must be crumbling inside! Like I said, conflicting emotions. I can't imagine myself being able to do that. The show must go on? But, who am I to judge someone else's motivation? There's way too much of that going around. There seems to be no instruction manual that describes how to function in a situation like that. Perhaps Hospice is the closest thing to it with their bereavement counseling.

I have a feed on my desktop that brings me links to articles with the words sarcoma or bone cancer in them. Nearly every day there's something new. Some of the articles are about pharmaceutical companies making announcements for their stockholders of a new drug that might be the next cure. I have seen these articles come and go. They are written from a very positive perspective. I am sure it helps them to get more investors. They are not misrepresenting themselves. They have already put years of money into researching those drugs.

There is a lot of controversy among various cancer support groups, and individuals, about pharmaceutical companies.

"They're just out to make money, to take advantage of cancer patients."

"They're working against great odds to create a new effective drug just as fast as they can."

A range of beliefs about them exists beyond both ends of the above spectrum. Imagine everything between pharmaceutical angels with the next gift for humanity to being in league with the devil permitting people to die unaided.

I used to feel quite neutral about them, then as I learned more about sarcomas, and how little funding there is for rare diseases, I felt resentful. Then, when I learned of a drug that actually could cure one kind of sarcoma, but not others, and the company decided to not go into production, I was vehemently angry. Then, as time went by, and I learned more about the intricacies of such endeavors. I grew more patient, not complacent, but at least comprehending. There's more to it that meets the eye, certainly more than one entity (company, government body) at the other end holding the reins.

What does this have to do with a girl in Scotland who died of soft tissue sarcoma? Probably little, maybe a lot. I am free associating here.

When I read these articles of brave young people courageously facing their particular sarcoma, often Ewing's, when I read about father's or mother's selflessly sacrificing their heart and soul to those children; or adults who get involved in fundraising events even while they are having surgeries or chemo, or grieving, I have such a mixture of emotions. It never fails to amaze me how these stories are never something about which I can feel neutral.

I do wish, though, that these reporters would say in their articles what kind of cancer a person has, instead of just "hip cancer", for example. This is so misleading and doesn't give due respect to the patient or the disease. OK, well, maybe I am being judgmental again. But, the public, the readers of those articles, should they remain in the dark about cancer? Should it be some mysterious, threatening thing that has no name, about which we should hide the facts? When one reads an upbeat article about a person who does really well, who survives many years, who "beat cancer", doesn't that give a false impression that it is easy to beat, that cancer is curable? Maybe that person has an easy to beat cancer, but without the actual name of the disease specified, doesn't that soften the impact? Doesn't that mislead the reader into complacency and lead them to believe that all will be well when it is their turn?

Conversely, when one reads an article where someone had a very terrible "battle with cancer", a beast without a name, doesn't that lead the readers to fear the great monster that will kill us all? I have seen too many people uneducated about cancer, who live in ignorance of their disease not bothering to arm themselves with the weapons to fight the cancer dragon, because of their positive-minded faith (denial?) in what they understand is the cure rate. I have seen too many totally frozen in fear because of the overwhelming mistaken understanding that there is no hope for them. Why bother to apply themselves to learning the facts? Reporters and newspaper editors, I hope will become more knowledgeable themselves and name the kinds of cancers about which they report, while they are creating these types of human interest stories.

Over the last six years, (since I started the Chondrosarcoma Support Group) I have read scientific articles on various aspects of sarcoma research. At one point, a cancer scientist was a member of my group. I could call him up any time, tell him about the article, and ask him what it meant. I learned a lot from Peng. He's not here anymore. (I miss him so much!)

But, now I sometimes call the author of a particular article and ask questions. I call the pharmaceutical company representatives, too. I ask them about whatever is the latest sarcoma drug about which I have read. I have never spoken with one who hasn't had a shred of humanity, who doesn't take pride in the work they do, whose voice doesn't waver just a tiny bit when I am tell them about why I called them, about the chondrosarcoma patients who need a new drug...

Need a New Drug? Wasn't there a song?

Yes, Here it is! I found it.

When there is a trial being planned for one of those new drugs, and I am asking how soon they expect it to begin, and they want to know why and I tell them because I have a group member who is counting their days, I can hear the regret in their voice when they tell me the date will not be any time soon.

So, I extrapolate that if they read about a Zoe, or a Miles, or anyone else, they cannot be entirely neutral either. So, I am realizing that Researchers are human, and pharmaceutical companies are made up of humans, and they are committed to their work. Now, that leaves me with wondering about the FDA and what are the workings behind getting a new cancer drug approved.

2007-09-15T13:16:00.000-07:00

Just some thoughts...

As moderator for the Chondrosarcoma Support Group and member of other Sarcoma Groups, I have an increased experience with the methods of coping that occurs with diagnosis and survival, or death. I think there is a place in all of us where grief resides. It sleeps there until it is nudged and suddenly it comes alive and fills us. It can be intense, and it is meant to be. Though, some of us have learn how to not let it be the dominating factor, so that we may be going about our lives holding it beneath our consciousness. Yet, it quivers like a nervous puppy, letting us know it is there no matter how we try to ignore it.

Really, I think grief sleeps until we need it, and yes, we need it. Without it we would not be fully human. Yet, we seem to be afraid of it when we work so hard to squelch it, put ourselves into denial so we don't feel it. Yet, when something occurs so overwhelming, it spills over us like Niagara. There is nothing to stop it. No amount of denial, no amount of thinking positive, no amount of Zen mind control can prevent us from feeling what is truth within us. Grief is necessary.

I have three children, all, grown up adults. Among them, I have 8 grandchildren, some are adults. I have 3 great-grandchildren, Alexander is the youngest. Among them all, life has visited upon them occurrences of grief. One might say that a three year old could not possibly truly experience grief. But, when the family husky had accidental opportunity for nose-to-nose acquaintance with the family bunny, nature took it's course before human intervention could take place. Alex and his four year old step-sister were inconsolable. As adults, our feelings about the rabbit were not attached, therefore grief did not awaken. But, observing the children's grief shook us to our core. Yet, as adults grief instructs us to take action to console those without consolation.

Perhaps in some other families where grief is stifled, not an acceptable emotion to be expressed, an adult would admonish the children. "It's only an animal! Stop that crying!" and they would learn right from the get go, it is not acceptable to share grief, or to have consolation. So, they learn to stifle it, as their parents have learned before them. It is my understanding, stifling our feelings can increase the intensity of the stress that it takes to keep denial in charge. This is not to say that we give our feelings free rein to overtake us. I believe that feelings wax and wane, and giving them fair opportunity to be experienced, allows for them to balanced.

I think Denial is a formidable enemy, especially when dealing with cancer. I see it doing it's dirty work in the various Sarcoma communities with which I am associated. Yes, it is true that denial may have an appropriate place in our lives as a coping mechanism, but when it takes over and controls everything we do to the point of not being able to work with our circumstances that is when it prevents us from moving forward and into the future, no matter what it brings. Denial freezes us and prevents our full presence in the moments of our lives meant to be cherished, even if grief is the central emotion being felt.

With little Alex and his sister, we could do nothing except permit them to be with their grief and to grieve with them and for them. (Empathy, I believe, is a healthy emotion, too.) Grief, given it's right to be, moves forward, and gives us the opportunity to take action to assuage it. It burns itself out periodically, so that we can function, so that we can make decisions about life, to respond to the next thing life brings us, to get out of the rain, if it rains, to go home when night falls, to make the effort to bury our dead. I think of that as healthy grief.

Comforting the children involved also, planning out and acting upon respecting the body of the bunny, burying it, and having a ceremony to put it to rest and help the children to have some closure. Of course, they were quite angry with Wolfie.

This too is a common reaction to the death of a loved one... Anger. And yes, it took a while, but they learned to let go of the anger, and forgive Wolfie for his part in the death, even though they still have episodes of grief popping up for them.

This is a minimal example of what we go through when we experience death and it's finality with those we love. Even in my position of having a support group, and being a member of other support groups for sarcoma patients, it is still not easy to accept the deaths of members. I am aware of the denial of the prospect of death, aware of the lack of preparation, aware of the shock and devastating results upon the family member. These situations affect me, too. I have a personal philosophy that gets me through it for my "logical mind" to grasp. But, this is not enough for my deeper emotions. So, I grieve the death and sometimes am forced to move on very quickly, as the needs of a newly diagnosed member take precedence. Unlike my great-grandchildren I do not have the luxury for closure by attending a ceremony to put to rest the people I care about.

I have been asked why I include in my blog, the stories of those who have died. Why don't I just write about those who have good results, who get to live out their lives without cancer, so that people can have hope. I can only say that death was my companion during the years that I was dealing with Chondrosarcoma, and formed my opinions about it now. Death is a reality of life, too often feared, and sometimes inevitable when there is a diagnosis with sarcoma, or most any cancer. To me, denying the possibility, increases a greater fear of death, and interferes with emotional healing and peace of mind, whether one dies or not.

2007-09-07T01:49:00.000-07:00

As a Viet Nam Vet, for one fleeting second his mind flashed-back on him, and he wondered if he had been shot. He was just walking along like any other day, and experience a cracking sensation and pain in his upper leg that knocked him right down. Not really knowing what had actually happened, but realizing it might be serious, his daughter, Debbie, took him to the Emergency Room. Ken couldn't talk her out of it. And in a way he was glad his daughter was such a take charge woman. He really didn't want to wait it out as much as he protested otherwise. He knew something wasn't right.

X-rays showed Ken had a fractured Femur, but the ER doctors were hesitant in telling him about the tumor that had caused his fracture without calling in an Orthopedic Specialist. So Ken had a long wait. By the time the Specialist had come in, Ken and his daughter had figured out it was more serious, but it never occurred to them it was cancer. They had never heard of Sarcoma, let alone De-differentiated Chondrosarcoma.

The fracture had broken the tumor open, so before there was to be any surgery, chemo was decided on first. When a chondrosarcoma tumor is no longer in one piece it has a tendency to spill itself into adjacent tissue. The hope of Ken's doctors was that the chemo might cause some containment.

Debbie, in the meantime, had spent time searching for information and read, over and over again that Chondrosarcoma does not respond to chemo. She couldn't bring herself to question the doctors, and trying to discuss it with her Dad was hard to do. He felt it important to "let the doctors do their job, and stay out of their way."

Unfortunately, the idea didn't work as hoped. Within the three months time of the chemo treatment, Ken's tumor rapidly grew to three times the original size noted at diagnosis.

There was only one option at this point, amputation of Ken's leg. Though this was a horrifying prospect to Ken's family, he faced the treatment option with a solid resolve.

"If my buddies back in Nam could have their legs shot off and manage... well, so can I," he said. "They'll just be a little bit more experienced at it. That's all!"

Ken's family had a much harder time adjusting to the circumstances than Ken did. Sometimes it is harder to be the loved one of a cancer patient than it is to be the patient. Ken refused to discuss the fears that others brought up to them. Thinking positive and tough was Ken's way. It had gotten him through to this point in his life and his family knew that he needed their support, so they put aside their concerns for his sake.

Ken was able to get through the surgery and rehabilitation process, as many of his buddies dropped by or called regularly. He took up working with weights to strengthen the rest of his body and actually felt healthier than in years, except for the pain. He found it annoying to take pain drugs as they made him feel worse than drunk and dopey, and so he would do without them until he just couldn't stand the pain anymore. He had a lot of phantom pain which finally got help with a drug that was not so mind-bending as a narcotic.

"Denying the pain is not as easy as denying fear" Debbie says. "Once the doctor explained to him the concept of the cycle of pain, it helped Dad to get a handle on it. He still didn't like the side effects of the drugs, but after a while his body adjusted. He even got himself into better shape by working out with weights every day.

Then, about a year out of recovery, Ken got a new pain in his back. He thought he had sprained it somehow. After all, being an amputee, one has to learn how to use the body differently. Other parts of the body have to take over for the missing part. It would be easy to have a muscle sprain.

But, the pain didn't go away. He was readmitted to the hospital after he began having numbness from the waist down. Scans discovered multiple tumors on his spine. This time, Ken declined to have chemo and chose to live out his life as best he could with whatever time he had left.

"My only regret is that I never questioned anything, or even really understood how serious this was. I thought it was supposed to be an easy cancer to have." Ken said. But, I am glad I am living out my time, without chemo. The pain is controllable, the nausea was not."

Debbie misses her father terribly, as do other members of the family. Ken was 53, and a first time grandpa. She says she wants others to know, "learn as much as you can, ask questions, and get answers. We never understood why this was so aggressive. And try to talk openly among your family about what you are going through, if you can."

2007-08-29T11:23:00.000-07:00

A shark attacked a local surfer the other day in the Monterey Bay south of me, at Marina State Beach. I was glad to learn that the young man will survive and is recovering. His friends who helped him get to shore are heroes, in my eyes. Ironically, the Monterey Bay Aquarium had just received a White Shark which had been captured off the coast of southern California.

That made me think again of last weekend's Ocean of Hope where those other surfers had paddled their way across the Catalina Channel (sans sharks) to raise money and awareness on behalf of Sarcoma. I think they were quite successful at it, as $80,000 was raised. Wish I could have been there to cheer them on!

A recent, well-written, article published in the Orange County Register by Spencer Kornhaber grabbed my interest, as I learned about how Keith Munemitsu began the Ocean of Hope campaign on behalf of his High School friend, Suzanne Leider, (picture above) the founder of Sarcoma Alliance.

Kornhaber wrote:

"Inspired by a magazine article about a son who paddleboarded for his cancer-patient father, Munemitsu took a year off work to train for the 32-mile Catalina Classic paddleboard race. He raised money for a local hospital in Leider's honor, and in 1999 paddled from Catalina to Manhattan Beach. Munemitsu's paddle across the channel grew into Ocean of Hope, a campaign to get paddleboarders to raise money for the Sarcoma Alliance by racing in the annual Catalina Classic. Since it started, the number of paddlers in Ocean of Hope has risen from one to 25 and they've raised more than a quarter-million dollars."

I realize there is a difference between paddleboarding and other kinds of surfing, so I apologize to anyone who feels this is not an accurate comparison. In my mind, anyone who uses a board for the pleasure of being "One with the Ocean" has my admiration, and respect, regardless of the type of board used, or the techniques of using it. More than play, this takes an incredible amount of strength, agility, shrewd judgement and a talent for facing the risks of certain dangers the average person does not need to consider. Observing those who ride the waves is the closest thing I can get to enjoying the thrill of it.

I don't know how long Spencer Kornhaber's article will stay in print, but I hope you will take a look at it. Also, here, you can see an excellent follow-up article by the same reporter. It is an odd coincidence that the young man who was attacked by the shark

Suzanne Lieder is no longer with us, having fought the battle with the Sarcoma Beast. In a way, Keith has been her hero, and now the hero of all sarcoma patients, in that he has brought to life the method whereby the Ocean of Hope event can bring opportunity for other sarcoma patients to survive.

The next time I go up to Steamer's Lane in Santa Cruz or any of the other local surfing locations I like to visit, I will be wondering how many other surfers out there on the Pacific might have hope in their hearts for someone they know who has, or had, Sarcoma.

I wonder what would happen if the Ocean of Hope event spread out all along the California Coast. Or, how about throughout the world? Would we, then, have a cure for Sarcoma?

2007-08-26T13:08:00.000-07:00

Living near large bodies of water all my life, (Niagara Falls, Lake Ontario, Monterey Bay) I am well aware of my romantically inclined nostalgia over sailing vessels of any kind. So, my interest was immediately peaked when I read a news article about a little girl who lived in Cruden Bay, near Aberdeen, Scotland. It is the home of the mysterious Slain's Castle where Bram Stoker got his inspiration for his story of Dracula. And, I bet you thought he was in Transylvania when he wrote that book!

This would have been Siobhan's 11th birthday. She died of Ewing's Sarcoma. I wonder if she felt the same way about the water as I do. I can imagine her standing near the cliff mesmerized by the sea with the wind blowing through her hair, and the memory of it sustaining her as she lay in her hospital bed wishing she were elsewhere. I often did that when I was in the hospital dealing with chondrosarcoma recurrences.

What does all this have to do with my nostalgia over sailing vessels?

Her uncle, Gordon Morrison, has built a sailboat in her honor and christened it Siobhan. image: It has been launched into the North Sea in her memory. What is different about the voyage is that there are no sailors aboard. The little four foot model vessel will travel alone through the sea by herself. She has been launched from the shore of historical Boddam at the easternmost edge of the land.

Apparently this is a centuries old tradition, but Siobhan's uncle wants to create a new memory with releasing his model. He is raising funds from this endeavor and offering another model sailboat in return for the person who can guess the mileage traveled before the final destination of the Siobhan. Within the model is a satellite tracking device (also a donation) in order to follow the little ship. Siobhan's uncle is doing this in gratitude to the Royal Aberdeen Children's Hospital where she received her care during her battle with Ewing's.

2007-08-24T23:11:00.000-07:00

Ocean of Hope is this Sunday. I hope you live close enough to attend.

My friend, Dave Murphy, once gave me a T-shirt with "Ocean of Hope" printed on it. At the time, being thickheaded, I didn't know what it was. Ocean of Hope is a fund raising event specifically aimed toward Sarcomas.

What I also didn't know, was that it was started in order to honor the memory of Suzanne Leider.

I found Suzanne's site back in the late 90's. She had her contact information on the site so I called her. She was so gracious and kind. She understood what I had been through with my own complicated Sarcoma histoy, and we had a bond. I was so sad when she died. But her legacy lives on in the Sarcoma Alliance and in the Ocean of Hope.

The 32 mile Catalina Classic paddle boarding race is like a marathon. Among other participants, a group of paddlers raise contributions every year by racing in the Catalina Classic to benefit sarcoma patients.

"Each racer will spend anywhere from six to ten hours on the water, propelled only by their arms – but, participants say, that's nothing compared to the trials of sarcoma patients."

So, get yourself out to Catalina where the paddlers will head for Manhattan Beach this Sunday. If you can't make it, you can still help out by going right here on the internet.

Do something to help increase the chances for survival for Sarcoma patients.

2007-08-19T11:54:00.000-07:00

The last few days I have held my breath every time the update landed in my email inbox from Miles Levin's Carepage. I signed up for it, just like many thousands (I believe) all over the world.

I held my breath because I didn't want to read those words:

"Miles Levin died today."

But, I couldn't be a coward and delete the email. So, I would go to the site and read the latest, mostly from his Mom, as Miles hadn't been up to it. Each day, while discussing it with another sarcoma group leader, it was a little like watching Hurricane Dean travel across the Atlantic building up strength for destruction, and waiting but not wanting to know. Hoping the monster storm will just quietly give up and go away. Instead this is a lot more personal, even though I have never met Miles. It's an unsettling, in-between state of mind, a twisting in the heart, a shaking of the soul. Miles and his family have touched so many in such a personal way. I am one of them.

Sometimes, when condolences are offered, people will say, "He'll never be forgotten." I think in this case, truer words were never spoken.

But, it's my view that there are not enough words on this planet, nor in any language, that will be enough to soothe the deep loss that his family has experienced. Of course, many are able to express what is in their hearts, simply because it seems that Miles, and his family have touched others in ways they never suspected. One could not read Miles' messages and not have their heart opened.

I remember reading somewhere that when the heart opens completely, it opens fully into compassion. Though the joy of opening the heart is incredibly beautiful, one cannot feel compassion without also experiencing the tears that come with it.

We all deal with death in different ways. Some walk away: "I cannot face it!". I don't think they are to be blamed. I have seen it more than once while ministering to my group members, when a family member couldn't handle their loved one's death. On the opposite pole, there is the death where no one has walked away, where the person dying is not entirely alone with it, where the family accompanies him or her as far as that last breath will take them. It's hard to accept, the numbness and desolation.

Somehow, it seems, that we cannot really indulge ourselves in the grieving process because we need to follow through with all that comes next, (whatever the individual choices). It's not simple. Death touches us in the most vulnerable part of us, that part where we want to have some semblance of control in our lives. Are we going to cling to the idea that death is not inevitable, when it is happening right in front of us? Do we not learn how precious is every moment, the turmoil as well as the peace? Do we not make a turn in the pathway our lives have taken, and start a new journey because of the changes brought about by having been left behind?

In other cultures death is a more public experience than we (in the US) are likely to have occur. It is hidden away in a safe place so that we can pretend it doesn't happen, at least not nearby, not in our face, so-to-speak.

But, I think Miles and his family have changed that. This has been a most public life, and death. Miles has been so often quoted: "Dying is not what scares me. It's dying and having had no impact."

I cannot even fathom the impact that Miles has had upon this world. It boggles my mind to imagine all the people who have been gifted with his pure innocence and enlightened wisdom.

I cannot even fathom that Miles Levin died today.

2007-08-11T01:11:00.000-07:00

Sometimes I smile and feel so happy inside. Another person has finished with Sarcoma and has the opportunity to go on into the rest of life with it behind them, with the wisdom and compassion they have gained from the experience to live life fully, and let go of the little things. What a price to pay for that knowledge! But, it is with joy that my heart allows me to free my concerns for them.

Sometimes I cry, the tears rolling down my cheeks, or the gut feels queasy, or just plain outright sobbing for people I only know through cyberspace. How can this be? The world is here on a screen, at my fingertips where strangers can open my heart to care so much about them.

Truly, this reminds me, too, keep living life to the fullest. I don't mean just to keep a positive attitude and smile with gratitude at all the good things only. I mean to take it all in, and allow myself to find the beauty and deeper meaning in some of the not so good. It seems to make it easier to acknowledge the difficult challenges life brings. It makes the good things all that more precious. Doesn't it?

It makes me look inside when I am disturbed by some new awfulness in life. The fact that the engine in my car blew and I have no money to fix it. Or, I have to depend on others to take me places. Of course this affects me. But, do I want to torture myself by letting my feelings overtake me? Or a bridge collapses 2,000 miles from me and people fall into the Mississippi River. It bothers me that these kinds of things happen, things I can't control. Things that hurt others. Things that destroy. But, does it have to destroy hope? Or compassion?

It all gives me perspective and patience, and a different philosophy on how I handle things. It makes me value my time and how I spend it. Do I want to go shopping for the latest fashions? Fill my house with knick-knacks? Spend my time playing blackjack on the computer?

No. I want to keep doing what I am doing, moderating an online support group for Chondrosarcoma patients, researching new articles on Sarcomas, keeping this blog so that someone, somewhere might find a little hope, a little understanding and sometimes a a sad story to learn from.

Though I went through eleven years of recurrences and still lived with the sense of waiting for the other shoe to drop. What will the next scan reveal? I have now survived forty years. I used to feel rootless, not able to find my niche in the world, wondering, "What is my purpose?". But, not anymore. Now I know this is it, where every day, sometimes I smile and sometimes I cry.

2007-08-10T00:13:00.000-07:00

Mike was first diagnosed in 1985 with Non-Hodgkins Burkitt's Lymphoma when he was 8-years-old. Although the doctors thought he’d not survive, Mike managed to get through his treatments and was in remission within a year. At such a young age to deal with this challenge, he managed to find the positive in everything, even losing his hair. His lifelong friend, Carol, says, "He would look at you and say, 'Watch this!' and with a huge laugh, he’d pull out his hair."

He continued to entertain others with his natural talents through junior high, high school, and college. He graduated from Syracuse University with a theatre degree and moved to NY to pursue a career in theatre on Broadway. He was an incredible singer, dancer and actor.

Soon Mike got a leading role in a family theatre production for the musical version of Winnie the Pooh. Mike then, co-starred in an on stage performance in the musical, "Big River". Shortly after that, he also had a part on the TV series, "Sound Effects". His exciting new career was off to a good start until, in December of 2000, after having some continuing pain in his shoulder, he was diagnosed with cancer again. This time, it was a very aggressive form of Chondrosarcoma found in his spine, and chest wall. Then, it was discovered in his heart, too. A very unusual manifestation.

Mike had nothing but a positive outlook. He was so determined and had unbelievable strength and faith in overcoming it this time, too.

By January 2001, Mike had open heart surgery, chest wall surgery and spinal surgery at Sloan Kettering in NY city. After which, he then went through several months of extensive chemo. Unfortunately, it was soon discovered to have also spread to his pelvis, and eventually metastasized to his lungs.

The doctors were amazed that he continued to be so strong throughout all this. But, when the doctors put him in the terminal phase, Mike started researching alternative therapies and found new hope in healing himself. He tried various methods and treatments that seemed to be so advanced, he thought they would work. He tried so hard to find a way to survive.

Mike died in March of 2002. He was 25-years-old.

"He touched so many lives in such a beautiful way. He was so full of energy, always laughing and so passionate about life and living it the best you possibly can. He was an incredible inspiration giving me the strength to endure through life's challenges, whatever they may be."

2007-08-07T22:52:00.000-07:00

You can see pictures from the Team Sarcoma Event in Vermont at:

http://moonrose.phanfare.com/

If you notice that there are none of me, that is because I was taking the pictures.

2007-08-04T13:51:00.001-07:00

The following entry is posted in the Italian language. I dedicate today to Kirsty and to those who love her.

London 2004

Nell' Aprile 2003 la mia amica Kirsty noto' una protuberanza sulla parte anterire della coscia sinistra. Il suo medico, visibilmente allarmato, la riferi' di urgenza ad un Ortopedico generico che lavorava in uno dei maggiori ospedali di Londra, il quale confermo' un sospetto tumore.

Dopo una serie di radiografie e biopsie apparentemente inconclusive, l' Ortopedico comunico' a Kirsty che l' unico modo per arrivare ad una diagnosi ben precisa era quello di estrarre il tumore chirirgicamente e poi farlo analizzare.

L' operazione - estesa e complicata - ebbe luogo alla fine di Maggio e il risultato dell' analisi patologica fu che questo era un chondrosarcoma di Grado I, completamente reciso con margini minimi.

Fin da principio, l' Ortopedico di Kirsty si mostro' una persona con cui era molto difficile comunicare: difficile fargli domande e difficile anche avere delle chiare risposte. Sotto molti aspetti, la qualita' della sua cura era stata abusiva e consistentemente carente in termini di un adeguato processo di consultazione con Kirsty. Consequentemente, anche dopo avere avuto questi risultati, a Kirsty rimasero una serie di domande e preoccupazioni non risolte. Durante il corso dell' ultima consultazione l' Ortopedico le aveva detto che c' era un 40% di possibilita' di ricorrenza. Questa era una percentualita' molto alta. Ma era proprio cosi'? C' era un rapporto causale tra nicotina, bagni di sole e condrosarcomi?

Tutto questo insieme di cose, insomma, avevano portato Kirsty a richiedere attraverso il suo medico una seconda opinione da un Professore che lavorava all' interno di una clinica ed una team specializzata in sarcomi. Questa consultazione ebbe luogo in Giugno e le informazioni ricevute da questo Professore, una persona molto cortese ed appropriata, rassicurarono molto Kirsty: non c' era alcuna evidenza di un rapporto causale tra nicotina, bagni di sole e condrosarcomi; e la percentuale di ricorrenze a suo parere era molto piu' bassa: circa il 20%.

Il resto dell' estate passo' tranquillamente, fiinche' in Ottobre Kirsty ando' a fare delle radiografie di controllo. Gia' da qualche settimana aveva notato una nuova protuberanza esattamente allo stesso punto di quella precendente; cosi' che, durante il corso della sua visita, la fece notare allo stesso Ortopedico che l' aveva operata. Dopo averla esaminata, l' Ortopedico le disse che molto probabilmente si trattava di una ricorrenza del condrosarcoma, questa volta pero' nell' anca e piu' profondo di quello precendente. Al quale questo aggiunse che molto probabilmente questa volta l' unica soluzione sarebbe stata un' amputazione totale dell' arto.

Dall' inizio, Kirsty ed io avevamo reagito a questa situazione in modo molto diverso. Ovviamente lei aveva molta paura e quindi non voleva approfondire la sua comprensione delle implicazioni di questo tipo di cancro. Per quanto riguardava me, anch' io avevo paura; pero' mi rendevo conto che c' erano tutta una serie di dure decisioni da prendere e volevo che Kirsty fosse in grado di prenderle alla luce di informazioni chiare sia su questo tipo di tumore sia sulle alternative possibili. Dato che non c' era modo di ottenere tutto cio' dal suo Ortopedico, cominciai a far ricerca su internet. Il seguente e' un esempio di quello che leggevo:

CONDROSARCOMI

I condrosarcomi sono tumori maligni del tipo sarcomatoso nel contesto dei quali sono presenti cellule della serie cartilaginea. Si distinguono condrosarcomi centrali, che originano all'interno dell'osso, condrosarcomi periferici che originano da una preesistente esostosi, oltre ai condrosarcomi periostei, mesenchimali a cellule chiare, di cui non trattiamo perche' piu' rari.

Il condrosarcoma e' uno dei piu' frequenti tumori maligni dello scheletro, si manifesta prevalentemente nel sesso maschile in una eta' compresa tra i 20 ed i 60 anni, ma puo' comparire anche nel bambino e nell'adolescente. Le sedi preferite sono il bacino, il femore prossimale, la scapola, la tibia, la colonna e tutte le altre ossa di origine cartilaginea.

La sintomatologia e' generalmente tardiva per la lenta evoluzione del tumore ed i primi segni clinici si possono avere a distanza di parecchi anni dall'inizio dell'evoluzione del tumore (anche 5 o piu' anni). Nelle forme centrali il sintomo iniziale e' il dolore che puo' diventare intenso quando vengono superati i limiti dell'osso e si spande nell'articolazione vicina. Nel condrosarcoma periferico il primo segno puo' essere dato dalla presenza di una massa voluminosa, dove prima si trovava una esostosi, che continua ad espandersi.

Esistono diversi gradi di malignita' (I - II - III) che sono caratterizzati da una diversa rapidita' di evoluzione e dalla piu' o meno precoce metastatizzazione; dai gradi inferiori, con il trascorrere degli anni, si puo' passare a quelli superiori ed il tumore assume quindi caratteri di piu' spiccata malignita'. Le metastasi sono generalmente per via ematica (rare quelle ghiandolari) e possono essere anche molto tardive, cioÃ¨ a distanza anche di parecchi anni dall'inizio della sintomatologia.

Radiograficamente il condrosarcoma centrale a prevalentemente osteolitico, ma puo' impregnarsi di sali calcarei, assumendo successivamente radiopacita' . L'area osteolitica si espande nella spugnosa poi supera la corticale dell'osso e deborda nelle parti molli circostanti. Le aree calcifiche si osservano soprattutto nei tumori a piu' lenta evoluzione e quindi a piu' bassa malignita'.

Il condrosarcoma periferico si distingue piu' facilmente in quanto si manifesta attorno ad una primitiva esostosi, come una massa abbondantemente calcificata, che assume spesso la forma del cavolfiore. In alcuni casi la opacita' e' minima ed e' intercalata da aree radiotrasparenti le quail sono indice di maggior malignita' del tumore.

Anatomicamente l'aspetto macroscopico e microscopico variano a seconda del grado di malignita' del tumore. L'esame istologico deve essere fatto su cartilagine non decalcificata per avere un quadro piu' preciso. Nella forma periferica la cartilagine in genere e' ben differenziata, appare molto piu' vitale e rigogliosa di quanto non si osservi nella forma centrale. Si riscontrano nei due tumori, tre gradi di malignita' .

Nel grado I e' spesso difficile la distinzione dal condroma, data solo dalla presenza di cellule che dimostrano una maggiore tendenza alla proliferazione.

Nel grado II la atipia cellulare e' piiu' evidente. I nuclei delle cellule sono piu' voluminosi; sono abbondanti le cellule con piu' nuclei, ipercromici. Nel suo contesto sono presenti aree mixoidi, con cellule a forma fusata o stellata. Nella forma centrale si osserva la penetrazione del tumore negli spazi midollari dell'osso.

Nel grado III si osserva ancora la differenziazione cartilaginea. Le cellule sono piu' spesso atipiche, con nuclei molto ipercromici, numerose ed abbondantemente polimorfe. L'osso circostante viene rapidamente infiltrato.

Le caratteristiche istologiche descritte non empre sono evidenti in tutto il tumore per cui la diagnosi di malignitÃ puo' essere fatta soltanto dopo una accurata ricerca su numerosi preparati istologici eseguiti su prelievi da diverse sedi del tumore.

La terapia deve tenere conto che in questi tumori esiste sempre una progressione di malignita’ che puo' arrivare alla differenziazione cellulare ed ad un conseguente aumento di aggressivita’. La cura e’ esclusivamente chirurgica e va dalla resezione abbondante, quando sia risparmiata la corticale, alla amputazione, quando il tumore invade le parti

molli circostanti.

Il tumore e' radioresistente e non e' sensibile agli antiblastici.

Piu' leggevo piu' paura avevo, piu' mi sembrava importante che almeno una di noi due sapesse precisamente tutto quello che c' era da sapere su questo cancro. Mi sentivo molto sola con quello che imparavo, molto spaventata, molto incerta sul futuro di Kirsty. Mi addolorava il pensiero che dovesse soffrire ancora di piu' di quello che aveva gia' sofferto. Sentivo una profonda tristezza, una grande rabbia, cosi' tante emozioni forti. Fu a questo punto che feci domanda per diventare membro del Chondrosarcoma Support Group, il gruppo istaurato e moderato da Elizabeth Munroz, nella speranza di trovare sostegno e informazioni. E per un anno, questo gruppo fu una sorgente continua di sostegno, informazioni, discussione e amicizia; e rimane tutt' ora una delle esperienze piu' profonde della mia vita.

Nel Novembre dello stesso anno l' Ortopedico di Kirsty la sottopose a un' ulteriore biopsia sostenendo sempre che l' unica soluzione sarebbe comunque stata una totale amputazione dell' arto. Data la sfiducia che ormai era subentrata nel loro rapporto, gia' da qualche settimana Kirsty aveva richiesto attraverso il suo medico che la sua cura fosse trasferita alla clinica dei sarcomi dove era andata per una seconda opinione.

Il trasferimento fu accettato alla fine di Novembre. Dopo una serie di ulteriori radiografie, alla fine del Gennaio 2004 il Professore di questa clinica ci informo' che in realta' Kirsty aveva una ricorrenza del condrosarcoma, questa volta nell' acetabolo. A questo aggiunse che stranamente questo tumore era gia' visibile nelle radiografie fatte a Maggio - cioe' le radiografie fatte prima dell' operazione, e che, data la profondita' e posizione, il loro chirurgo non avrebbe potuto fare altro che una totale amputazione dell' arto. In conclusione, disse che in ogni caso avrebbe consultato altri colleghi specializzati in questo tipo di condizioni per vedere se sarebbe stato possible per qualcuno di fare un intervento che salvasse l' arto.

All' inizio di Febbraio lo stesso Professore rispose a un mio email informandomi che un gruppo di specialisti si erano riuniti per riesaminare il caso di Kirsty. C' era la possibilita' che il problema fosse piu' benigno di quanto non fosse sembrato e un intervento per salvare l' arto era anche stato attivamente considerato. A questo aggiunse che la cura di Kirsty sarebbe stata trasferita all' ospedale dove lavorava questa team di specialisti e che, fosse stato ancora necessario, sarebbe stato contento di riferire il case anche a un rinomato specialista Italiano - cosa che Kirsty ed io avevamo richiesto.

Il 25 Febbraio Kirsty ed io andammo a un appuntamento con il suo nuovo specialista, il quale ci informo che il risultato della reviosione del suo caso aveva rivelato che non aveva mai avuto un condrosarcoma. Quello che aveva sempre avuto, invece, era una condromatosi sinoviale, estesa dalla coscia fino all' acetabolo. A questo aggiunse che, visto che non aveva alcun sintomo, nessun intevento chirurgico sarebbe stato necessario, solo delle regolari radiografie.

Felicita', rabbia, dubbio: tutto in una volta. E se si sbagliassero? Richidemmo che il caso fosse esaminato anche dallo specialista Italiano, il che fu accettato cosi’ che tutte le radiografie e vetrini vennero inviati in Italia.

Il 29 Marzo Kirsty ed io ricevemmo il sequente e-mail da questo specialista:

Suggetto: Diagnosi

Gentile Signora,

questo messaggio e' per confermare che la nostra diagnosi e' Condromatosi Sinoviale.

CONDROMATOSI SINOVIALE

La condromatosi sinoviale e' una rara condizione benigna. Ci sono diverse opinioni a riguardo della possibilita' di trasformazioni maligne di questa condizione. In ogni case, ci sono almeno 19 casi ben documentati di questo tipo di trasformazione.| Differenziare tra condromatosi sinoviale e condrosarcoma puo' essere molto difficile.

2007-08-02T00:02:00.000-07:00

Who would have thought that a penchant for eating junk food, would turn out to be life saving? Lucia's husband, Mike, jokes about this in relationship to his diagnosis of Thoracic Chordoma. In 2006, he was having gall bladder problems, which can be exacerbated by eating junk food. Lucia, worried about Mike's suffering, insisted he go to the doctor. That was when his Gall Bladder disease was diagnosed. But, an incidental X-ray was interpreted as the worst possible news. The man she loved who has been the solid gold rock her in life was told he had lung cancer, the deady Mesothelioma. Lucia thought her world had come to an end.

With a thriving business to manage, she felt like she had been kicked by a horse. She literally lost the strenghth to keep standing. Although she had never missed an appointment with any of her clients before, she found it nearly impossible to continue. Fortunately, her staff and co-workers understood completely and insisted she go home. It would be, after all, a long weekend to absorb it all. Her entire salon stood strong, and competently took over her responsibilities.

It was at this time when Mike was able to quickly arrange a second opinion, and learned that under no circumstances should he do anything further until he was in the hands of qualified Oncologists, which were not to be found in his local community. The X-ray had been read incorrectly. There was no tumor inside his lungs. He did not have Mesothelioma. He did have a tumor, though. But it was in his back, at the spine.

Mike was able to have his gall-bladder surgery and his tumor surgery both at the same time. He saw Thoracic Specialist Dr. Rafi, at Loma Linda University hospital, who was able to peel the encapsulated tumor off his bone in one piece. Mike was able to return home in 3 days, and took the rest of the month to recuperate. During this time, since he had been offered a new job just before the diagnosis, Mike attended to his new training, while waiting for his body to heal. Not one to waste time, he also continued to manage the construction plans for Lucia's new Salon.

As in many cases of Sarcoma, the actual diagnosis was not pinpointed until the biopsy results came back. Mike had Chordoma.

Inwardly, Lucia took all this very hard. She had spent considerable time on the internet researching spine tumors. This didn't encourage her as she found so much disturbing information and hadn't understood the true diagnosis. With so much overload of confusing information she felt like her world was falling apart.

But, how could she not be encouraged by Mike, who in the face of it all, continued to do the things he wanted to do, and accomplished so much while being hampered by his situation. She quickly learned how to be strong right alongside him.

Still, she found it helped to have support for herself through the Chordoma Support group. Still, sometimes the worst case scenarios of other members were presented based upon the writer's understanding and experience. And this was unnerving. Lucia had to make a decision to not fall into the trap of fearing the worst. But, she didn't want to sugar coat the situation. Not one to hide behind not facing the facts, Lucia chose to understand that there are possibilities, and challenges they would face that might not always present the best of outcomes. She wasn't going to pretend that everything was fine when it was not. She wanted to be prepared if things got bad, and work her way upwards from there. If she understood all the options, she wouldn't have any unpleasant surprises. It truly helped her to know all the facts, and it turned out that she felt so much better when Mike didn't have all the bad things happen that she feared.

Mike and Lucia are in the best years of their life, with four kids between them, and two grandchildren. This of course, affected the whole family. Rather than keep it all hidden, they shared the diagnosis with their kids. Mike's grown son, like his father, has been a rock throughout it all. Lucia's daughters were shocked that the only man they ever considered to be their Dad was going through this. Facing the situation together, with each other's support has brought them closer together. The grandkids are not old enough to have to know all the details, so they had no added burden of stress, and the family was able to still enjoy life to the fullest.

After Mike recuperated from his surgery he received further treatment at Loma Linda, one of four hospitals in the country that has Proton Beam Radiation, during which time he continued to work and attend classes related to his new training. He was not going to waste a moment feeling sorry for himself. He saw that Lucia needed encouragement to get back to being focused on her work as well. She had already spent too much time worrying thinking about the fact that they had just broke ground on a new salon, when their world was turned upside down by Chordoma.

Lucia says: "I just had to clear my mind of the belief that every treatment was possibly going to cause irreversible damage to my best friend’s body. There were days when I didn’t know if I was coming or going.

It's incredible how all this happened and things are still OK. My salon has done well. The entire staff has been strong and stable, and it just keeps getting better. We finished the new salon within the building permit time, and looking back, I can’t believe Mike did this for me, all while going through such a major life crisis.

I learned that the best thing to do is surround yourself with good, positive people including family, friends, and clients. The little things, including all the unnecessary drama, really don’t matter in the big scheme of life."

***
I haven't given up on keeping the Blog.

This last week has been quite challenging while I have been fighting off Bronchitis.

Got some antibiotics and am doing better. Now, my Asthma has been aggravated.

So, I have been needing to focus on taking care of myself. In the meantime, I have also been catching up on taking care of my Group. So, please excuse me for not keeping up.

2007-07-26T01:05:00.000-07:00

That first day started quite early for me. It would have been 3 o'clock in the morning, California time. What little sleep I got through the jet lag, was interrupted by the awesome light show of the night lightning. Not complaining, you understand. I LOVE lightning!

We all met in a large room of the hotel where all the bicycles were awaiting our presence. I looked around me as everyone got ready, admiring all the slick biking attire, and those really great helmets that always remind me of some part of a Klingon costume in a Star Trek episode. It felt very surreal to this woman who hasn't been on a bike since 1975. There just isn't any butt bone to keep me on one of those banana seats no matter how much padding I have grown!

After everyone was introduced to their bikes, and we all went outside for a couple of group photos, the rain began in earnest! This resulted in a few deciding not to particpate.

Blanca, from Mexico City, and her young son, Ricky, rode in the van with me while we passed by the cyclists and checked on their progress. The longer we traveled the more distressed our nine year old passenger became. He came all the way to the US to ride his bike, after all. And what was this? The very first day, he is banished to the van! Well, mother knows best! That is for sure. It has not been that long since Ricky finished Chemo. So van duty was the order of the day. He was unconsolable. Finally, Chris, our Sojourn driver, was able to take a moment, pull off the road, and communicate man to man with Ricky. Even though they didn't speak the same language, I saw Ricky respond to the guy to guy thing and pull himself together. His mother and I had no luck, so it was heartening to see the positive effect that Chris had on him, plus the package of skittles.

As unhappy as Ricky was, I couldn't help but think how brave his mother and he were to come all this way to be in Vermont with us considering his Sarcoma diagnosis and all they had been through so far.

I am used to communicating with Sarcoma patients through the internet. Though I have deep feelings for my cyberfriends and family, it sure brought home to me that life can go on. The sun doesn't stop arising, the rain comes when it chooses, and life continues in whatever direction we take it, even after the diagnosis, the surgery, the treatments. And, yes, sometimes we don't get to ride our bicycles! But, another day may come when we can! And in the meantime, we can find people who care about us enough to bring us out of our funk, and make life sweet again.

I have not been very socially active for quite some time. Maybe it is a natural part of "aging", now that I am an official senior citizen, or maybe I have just been withdrawing from the "real" world as so many of the anti-internet folks would say. I have to admit that while away in Vermont, I was extremely aware of my lack of comfort of not having my fingers glued to a keyboard. But, perhaps my association with about 60 others on a day to day basis helped keep my fingers busy in other ways. Thrusting my arm upwards out a window and shouting out, "Go Team Sarcoma" to the cyclists along the route while my gallant Sojourn Tour Guide drove along the course was one way to keep me happy, while somewhere deep inside me, a little jealous girl from my past cried out, "but I want to ride a bike, too!"

I quieted that little voice with promises to let her ride the wide seated recumbant bike that sits in the Easy Racer warehouse back in Watsonville. I got to try it out a few months back. I will have to find a way to attach my right foot to the pedal so it won't fall off due to the missing muscles of my leg. But, I am going to try it again!

2007-07-25T01:00:00.000-07:00

Thank you to all who have contacted me asking for more blog. I will continue it.

I have returned from the Team Sarcoma event and will be catching you up on all the highlights. What an incredible experience it was. I hope you will consider attending next year's event, or plan on creating your own. If so, for more information, see:

http://tinyurl.com/cdv6b

Presently I have a terrible bad cold or flu which quickly developed into bronchitis. The doctor has now placed me on antibiotics, and as soon as I am more rested and feeling better, I will be able to return to posting more sarcoma stories. In the meantime, if you would like to share your sarcoma experience, either as a patient, caregiver, medical professional, or bereaved loved one, please let me know by using the comment section or contacting me at chondrosarcoma_care at yahoo dot com

2007-07-15T21:21:00.000-07:00

Arrived at Burlington Vermont airport at 9:45 am and sat outside the baggage area awaiting my ride. I took photos of all the lovely lilies growing in the meridian. Shortly, Bruce and Beverly Shriver drove up. I hadn't noticed them at first, as I was busy focusing. Suddenly there was Beverly. I have never met her before. We have only spoken on the phone. Knowing someone by their phone voice creates a picture in the mind. It certainly didn't match the realizty. I never would have been able to predict that the woman I saw coming toward me was the Beverly I have spoken with. Yet, there was that instant of recognition... It must be her. It was a joyous sensation.

Bruce drove and immediately we spoke of Team Sarcoma plans as we went to the hotel. It has all been a strange dream. I have a severe case of jet lag. It seemed imperative to get me to a bed and sleep. But, I had not taken my medicines which need to be with food. So, Bev and I walked down the street to get a bite to eat. She introduced me to Truess, who is from the Netherlands who walked with us. She is attending the Team Sarcoma event to ride a bicycle, and to honor her youngest son who died of Ewings Sarcoma which was located behind the fifth rib. He was treated with the standard protocol for six months and surgery. But it quickly relapsed and moved into the eye and abdomen. Now her other son has recently been diagnosed and treated with another kind of cancer. He is presently doing well.

Once back at the hotel, I met my roomate, Maribeth from Illinois. Her son, Alan, died 13 months ago of Ewings. The grief still hurts, but she is one to turn her misfortune into action and that is why she is here, to create Sarcoma Awareness and raise funding for research. Considering her own disabling medical problems, including a severely degenerated foot surgery gone wrong. It can only be a mother's love and remembrance of her son that puts her on that bike and pedal way for Team Sarcoma. Maribeth says she can hear her son cheer her on!

By this time I was "punch drunk" with jet lag and dragged myself to lie on the bed and fell into deep sleep for several hours. Maribeth came in to wake me so we could go to our first Team Sarcoma dinner with all the other participants. There was a lovely buffet in a room full of strangers. I felt so out of place. Where was I? And what am I doing here? Surrealistic.

As I entered the banquet room a stunning woman was suddenly in my path with arms outstretched. Something familiar about her, but I couldn't place it. Another of my cyber phone friends, I also have seen pictures of her. Funny how the mind plays such tricks on us, convincing we know someone's appearance due to these subtle clues. Another moment lingered as I questioned in my mind, "Who is she? How do I know her?"
Then as she hugged me, in a flash, tears stung my eyes. It' s Mary-Elizabeth! I felt quite shaken with emotion. Here was the woman who I had worried about so much in my group when things were not looking so good for her. She is looking healthy as a horse! I am so excited to see her. I so enjoy the jug.

But, the show must go on, as they say and so began to settle into our seats for dinner and a presentation. I couldn't tell at first if it was my left over jet lag, my emotional lability or that it was just plain hot and stuffy in there, but soon after the meal, I had to make a quick exit, and pull myself together.

After I had calmed down, and felt better, I sat out in the lobby where I met with Rose and her solid rock of a husband, Bill. They will soon celebrate 50 years together. Again, it is odd how we get an impression of a person that doesn't match up with reality. It was Rose who I thought would be a tall stately woman with a force field around her to rival Star Trek. Imagine my surprise and delight when I met this petite pixie woman with the ageless face, and the beautiful smile. Rose and I spoke of Sarcoma Group moderating/managing issues we had in common, while Bill sat with us in his calm, accepting presence. I felt like I had been with these old friends before.

Then, while looking for a computer to use, I met Marthen, from Denmark, a handsome young man with crystal blue eyes and blonde dread locks. He was diagnosed with a very large 17 cm by 4 cm Liposarcoma in his right medial thigh and shin area. He had radiation and major surgery to remove it seven years ago and very happily has had no further recurrence. Though damage from the surgery has left a large indented scar and complete numbness of the shin, Marthen rode bicycle in last year's Team Sarcoma event. Even though he went through all that, he says, he wasn't "paying attention" to the message behind his diagnosis. Always in his life he had been very sports oriented, participating in climbing, hiking, underwater sports, and so on, he continued to pick up and do the same after his sarcoma issues were done. Since participating in last year's event, he came to meet many others with Sarcoma diagnoses. This brought him to an awareness of his own good fortune. He realized he didn't think anything about it. He didn't think anything about the possibility of losing a limb or his life. Marthen came to a conclusion that he wanted to do something more for sarcoma. He got involved with the Danish Cancer Society Youth Group.

So many other stories to tell, but I am on a borrowed computer and now my time is up.

2007-07-13T15:14:00.000-07:00

I'm leaving on a jet plane....

What a great old song!

Tonight is the night, and I have just a few hours before Katsumi arrives to take me to San Francisco Airport to catch my flight. I am nervous as a cat. The suitcase is sitting open on the sofa and I keep walking back and forth from room to room trying to think of what it is that I am forgetting. Oh, yeah, this. Oh yeah, that. And I toss it in.

Taking a break, I sit down next to my mess and start pulling out some of the "this and that's" and scold myself for being silly. I don't NEED that! Lighten the load!

I'm not sure of what my computer accessibility will be while away in Vermont for our Team Sarcoma event, so I will more to update the blog this coming week if I can.

But, be sure I will take a lot of pictures with my new birthday camera, and will load them up later.

My flight is overnight from SF to Washington DC, then a two hour wait before flying into Burlington tomorrow morning. I hope I can get a good night's sleep while traveling.

Keeping this a short note.
Bon Voyage!

2007-07-11T14:34:00.000-07:00

Resilience is not something we are born with. It is what we gain from our experiences. Today is dedicated to Belinda, a very resilient woman, who was diagnosed with chondrosarcoma in the skull base in March of 2000.

She had gone to see her Ophthalmologist when the movement in her left eye had stopped. The tumor was found with a MRI.. It had wrapped about the 6th cranial nerve, grown up through and around the entire left lobe of the brain. Her doctor, not having seen a case such as hers before, informed her how rare it was. Since no one in her state did skull base surgery, she was referred to University of Arkansas, Dr. Ossama Al-Mefty, one of the top Neurosurgeons in the country.

Feeling quite alone because of the rarity of her diagnosis, she searched the internet for information and support. There was absolutely no information available to her from the places she searched. (The information highway has expanded considerably since then!) It was rare to even find an article on it. But, she did find the Chondrosarcoma Support Group and became one of the early members.

Belinda had a craniotomy. Dr. Al-Mefty was able to delicately remove most of her tumor. A small remaining piece was inoperable because of its location beside the brain stem.

After being given some time to heal, she was sent to Boston for Proton Beam Radiation at the Northeast Proton Therapy Center. Dr. Norbert Liebsch oversaw her case. She had 42 treatments over several months

With such drastic trauma to her head, brain, skull, adjacent tissues, one would wonder if she has any quality of life. While most would rather not think of these things, Belinda openly shared with the group some of the symptoms she experienced after her treatments and made assurances that things do get better. Like a pioneer she led the way for the group, so that others will not be so overwhelmed by the inevitable reactions of the brain to such intrusion.

Not all Skull Base Chondrosarcoma (and Chordoma) patients experience the exact same set of symptoms. It all depends on what parts have been affected. Because of such invasive surgery there is also swelling that can cause symptoms, which will diminish after the swelling goes down. In Belinda’s situation, she did have headaches. In her own words, she says:

“I could not stand light or noise during the headaches and to even touch my head was painful (like to lay down on a pillow). My surgeon told me it could take up to 3 years for the brain to "re-route" some of its functions. As time has passed things have gotten better. I had a lot of fluid behind the ear drum, which felt very strange. I could move my head back and forth and actually hear it slush around in there! It seemed to affect my hearing at first, but that has improved now. If you are going through this, you will notice over time things slowly improving.”

A late effect that Belinda experienced began September of 2003. She started having fatigue along with a few other problems. It was a struggle to get up and go to work. Walking to and from her car was exhausting. She saw an Endocrinologist who diagnosed adrenal insufficiency (Secondary Addison’s disease). She was given steroids and thyroid medication after her results from the ACTH stimulation test came back. It seems to be pretty common for those who have had proton radiation done in close proximity to the brain stem. Over a period of time, this may stop the function of the pituitary gland.

“It can be taken care of with medicine, but you have to stay on it for life. But, hey, you CAN live without the pituitary gland. I’m just glad someone knew what to look for. Being put on thyroid and steroids made all the difference in the world in my day to day living.”

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Belinda was always there to offer help to others going through the same thing. She would put worries at ease or tell how to work out the problem. She reassured others of the proton beam experience and has truly benefited others in the group as well as herself.

“I feel blessed that I can provide that information....and maybe ease some of the anxiety they have.”

She has since returned to work. She drives her car and lives a normal life. By Thanksgiving week of this year (2007) She will be a 7 year survivor!

2007-07-10T09:14:00.000-07:00

This is a difficult dedication. It is like reaching into the sea and trying to find the pearls floating in the seaweed. Oh, I know that pearls are way further down, hiding in the oyster shells. But, this is what came out of my brain and into the keyboard. (Maybe it's the insomnia.)

The sea itself is made up of components so important for survival. Seaweed provides protection, shelter and refuge as well as a valuable source of nutrients for the abundant marine life. The various sarcoma organizations represent to me, this very same kind of environment.

The pearls not hiding in the oyster shells symbolize the leaders of the diverse sarcoma organizations. Maybe, it is one heartbroken mother, who has set up a chat website with other parent's whose children have died. Perhaps a Sarcoma patient he wants to leave his mark on the world by sharing his blog. Maybe it is a whole family, enthusiastic to raise funding for a particular type of Sarcoma. They are the ones who organize bike rides and public awareness, and seem to make all the connections in the right places.

Then, there are the sarcomas survivors, who have created an online support group or website. And of course, the business savvy people who know how to form a great non-profit organization creating opportunities for fund-raising dinners, galas, and golf outings. They have the dreams and find a way to meet their goals.

All of these are the pearls I allegorically perceive floating among the seaweed. I dedicate this blog entry to the Pearls.

When I first began the Chondrosarcoma support group, I felt like the Island that "no man is". I was stagnant, in a vast ocean looking for just one other Sarcoma Survivor, hoping one might come my way. I often imagined that first encounter…

Lo and behold, the first Pearl I found, was Suzanne Leider, and her fledgling website, Sarcoma Alliance. She was way ahead of me, having her own site, a discussion board, a group of volunteers to help out, a non-profit status, and she had a place where rare sarcoma patients could communicate with one another. I loved the sunflower in her logo, so apropos of her warm personality that came right across those telephone wires when we spoke. She encouraged me to stick with it and grow. Sarcoma has taken Suzanne to some other Sunflower fields, but her legacy lives on in the gift she left behind to those who follow.

Then I discovered ACOR's Rose Burt. Need I say? A rose pearl? I joined for a while, but my heart was already nurturing my brand new creation... the Chondrosarcoma Support Group. As more members joined, and my responsibilities increased, I had less time to read through Rose's group's emails, many of which were regarding other types of Sarcomas. It was more than I could handle. She sure had a strong shoulder and a good ear, though, because I took advantage of them often back then. At one point she encouraged me to move my group to ACOR. I thought about it, I read through the site and learned how it worked. It was the most stable, well organized, multiple self-help community I ever could have imagined. Here was ACOR doing it not only for Sarcomas, but for a ton of other conditions that had not been getting the interaction and support needed.

Rose has had her ups and downs throughout the years with multiple recurrences of Liposarcoma. Life is challenging enough to face under normal circumstance, those with Sarcoma have the added problem of feeling quite alone in their battle. Rose has been there for them, even when she might have been needing someone to be there for her. Rose is the kind of pearl that you just know has layers and layers of inner strength and character built right in underneath that soft pink exterior.

Then, another Pearl, Mimi, came into my life. She didn't know she was a Pearl, and neither did I, at first. It just sort of crept up on her, the luster just started to glow, and suddenly she was one. Originally, Mimi joined my group on behalf of her Granddaughter, Carly, who had Mesenchymal Chondrosarcoma. At the time, it seemed appropriate. I had less than 50 members in my group, and Mimi knew of two others with the same diagnosis as Carly, so we banned together. Before long, my group grew to 100, and among them, a few more Mesenchymal members joined.

It was quite confusing how different the treatments are for Conventional Chondrosarcoma and Mesenchymal Chondrosarcoma. Some of the members were noticing and were unnecessarily frightened by the chemo, and radiation the Mesenchymal Chondrosarcoma members were going through. Generally, they are not standard protocol for conventional Chondrosarcoma. This disparity caused some of the Mesenchymal Chondrosarcoma members to question their doctors treatment choices. I saw this dichotomy and asked Mimi if she would head her own group. She said she couldn't do it, she had no experience. Of course, she did! She had a granddaughter who gave her all the experience that put her on this track in the first place. She had the intent, the fervency to put her life on the line to research whatever she could to help her precious Carly. Now, she has grown and reached out beyond her own group, gaining more connections in the Sarcoma community than I will ever know. I don't know how she does it with 3 grandchildren in the house!!

The luster on the Mimi Pearl is slathered with pony tails, cartwheels and baby burp-up, and all the love and compassion that two grandmotherly arms can squeeze into one hug! Okay two hugs. As many hugs as you want!

Then along came Doctor Dee on her broom. She is the extraordinary Black Pearl, another kind of rare.

Her Leiomyosarcoma site knocked me off my feet. I recall perusing page by page into the wee hours of the night. Before you know it, I sent an email to ask something regarding an article posted there. She provided a flood of information. I got the fastest education from this woman! And continue to learn from her daily.

Dr. Doreen Kossove has continued dealing with her own Leiomyosarcoma recurrences, while this labor of necessity fills her life. Her site also educates others who seek to gain knowledge from her wisdom. Dee and her alter ego, “Madame Brimstone” seem to have worldwide connections. She's not afraid of anything I can think of, though some may be afraid of her.

She sticks to the business of finding answers where sarcoma is concerned. She is focused and keeps her eye on the goal, and will not be distracted with frivolity. I love this woman. I wanna be like her when I grow up! The powerful Black Pearl has a soft spot, I suspect, because when she heard I had a possible brain mets, she was right there feeding me information. My motto, "Knowledge is Power" is the epitome of the information gatherer. I know this woman is at my back! And she will give me a good kick, if I need it.

You know how they say that finding something precious is like digging through haystacks looking for a needle? Where Dr. Doreen Kossove is concerned, I found the Black Pearl.

(Illustrations by Alison Woodman)

Dave Murphy is the Illusive Pearl. His name kept coming up when I searched the web for Sarcoma, or whenever I had communications with others who knew him. "Oh, you should talk to Dave, he'll know what to do. You two would have so much in common. He works tirelessly on sarcoma issues.” Dave has been responsible for establishing the sarcoma alliance reimbursement grants for getting sarcoma expertise for sarcoma patients. “A wonderful man, with a Dave sense of humor.

His name was always popping up. There it was again, the signature on a circulated email among the various sarcoma group leaders, managers, moderators, and all those other titles we end up with. I’ve learned he is humble, calm, effective, and just quietly gets things done. He has a knack for getting people connected and Dave continually encouraged Chondrosarcoma people towards my group. How could I not begin to know his character, by his actions, his commitment, his good heart? We have met more than once, in person, and still he is a bit of the Illusive Pearl. He's the kind of guy whose got a lot of mystery behind him, and incidentally, a good common sense on how to handle a computer to it's best capacity. How he manages to handle the work he does with the Sarcoma Community and still hold down his full time job as a university Computer Networking guy, I cannot fathom. Maybe it is because the one with the Sarcoma is no longer in his life but in his heart. Piera, his wife, died of an unknown kind of sarcoma in a very short time. During her illness, the diagnosis changed from one kind of sarcoma to another, so he may not ever be entirely sure exactly what kind she had. All I know is that he is here, now, for so many who are facing what he and Piera once did. I am sure others' have put their hands into the seaweed and pulled up this precious gem of a man.

Then there is the Clear White Pearl, with that hint of the heart of gold glowing through, and the sparkle of youthful ideals and integrity that is precious to behold. This is the kind of Playful Pearl that, if it were to fall on the floor, the cats would think it a great toy, and she would roll around corners, laughing, just to see them leap after her pearlness. I consider myself very lucky to have Mary pop into my life.

Suddenly there she was, encouraging me to join her group, to participate on her Adult Bone Cancer Survivors website. So often the larger percentage of bone cancers are in children. As a young adult with a very rare Parosteal Osteosarcoma, it seemed somehow as though she just didn't belong. She wasn't a kid anymore. The groups were full of parents communicating about their sarcoma kids. She wasn't a parent, but seeing them suffering on account of their kids, made it difficult for Mary to express herself. You know... when there is a problem, some folks just live with it. But, Mary is not like that. She has a mission in life and that is to get things done. She is so capable and organized she does ten times more the concentrated computer work than I do, and she has ten times less the arm capability that I do. I think of her as springtime, with lots of ideas and plans and energy (though she would say she doesn't have energy, I bet.) And I compare myself to Autumn, getting burned out, slowing down, needing a rest. (Just don't start snowing though, I better watch what I say. I'm not ready for winter just yet. Halloween, maybe.) Mary has a gift; she created her group on her own website; she got it up and running with a very professional format. She created a lot of educational patient self-help material and the site practically runs itself. A lot of the diverse young Bone Cancer members can relate to Mary, her site, and others of like mind. I know there is a lot of “joi de vivre” in her group, as well as the typical challenges that come along with bone cancer diagnosis and treatment. I think it is because of Mary’s Heart of Gold Pearl Energy.

Then there's Bruce Shriver. To me, Bruce is like that unusual pearl which is not round. It has an interesting, convoluted rough texture and shape to it. But the luster is there, and for sure, those layers of multifaceted inner strength and purpose. I had seen his site in passing, and that's exactly what I did. I passed it, and went on with whatever I was searching for elsewhere. Then, there was his site, popping up again and again, enough times that I really was feeling NUDGED! So, I quietly read it, and continued to learn things. I cried about his daughter, Liddy Shriver, with her bicycling days behind her. I had to give that up a long time ago. But, she had no choice about it.

Survivor's guilt may be the cause of my tears. And then, to think of her Dad dedicating the rest of his life to her memory. That's something my Dad would have done. I cried some more.

I signed up for the ESUN newsletter and some time later realized I had closed out the account in which they would arrive. But, Mimi was sharing them with me, and I was working on my group many hours a day. Didn't have time nor inclination to leisurely seek outside of chondrosarcoma, dismissing anything that didn't have that word in it. I was like a horse with blinders, a stubborn mule. You know how they say, "you can lead a horse to water, but you can't make him drink"? That was me. I kept on being led to Bruce and the Liddy Shriver Sarcoma Initiative. I just didn't "get it" as Donald Trump says. Well, maybe you can't get a horse to drink, but a mule might be coerced. Just dangle that carrot and it might get a move on.

However, I would have to say that two pearls are better than one and can get a clueless zebra to do what they want. That's right, not a horse, not a mule, a zebra. If I am to compare myself to the equine, that is my symbolic totem! And this zebra found those two pearls working together fascinating! It was the collaboration of Mary and Bruce that made the opportunity for me to pull my head up from the monitor long enough to see what they were up to. Yes, you guessed it. Team Sarcoma. Bruce encouraged me to participate. I couldn't conceive of it. I was dealing with some complicated medical problems at the time (torn rotator cuff was the most painful of the three) and really I just needed to be in a cocoon mode. But, Mary went ahead and joined with Bruce and all the others she met at the Team Sarcoma Event last year in Denmark. She came back with pictures and stories, and a sense of herself I hadn't noticed before. What was it? Resolve maybe. I don't know, but I sure wanted some of that.

It's kinda funny when I think of the Pearls in my life, the life I thought was so empty, the life I thought was a lone island.

I sit with my mixed metaphors and analogies. I don't feel quite so much an island anymore as part of a peninsula that spreads around a bay. Or is that an archipelago? All the other sarcoma groups and organizations that once seemed like islands to me, are now a part of that conjoined land reaching out to one another and embracing the still unknown waters. We are getting to be like a string of pearls as we come together and tying knots to hold us to one another. (Yeah, networking is what I am trying to convey.)

My biggest dream for so many years has been to have the clasp that closes the circle of pearls and creates a necklace of completion in the medical treatment of Sarcomas. That clasp is created by the Researchers, and those who fund them. I'd really like to see that dream come to fruition.

It's true. Sarcoma has no borders.

2007-07-09T20:07:00.000-07:00

Was there an angel among us? Today's entry is dedicated to Maddison.

There is a belief in certain cultures in the world that sometimes a very special person is born whose main purpose in life is to make changes for the better and bless those who come in contact with them. Sometimes these people are called Avatars, Bodhi Satvas, Immortals, Tzadikim, or Angels. We may think of them as adults who live many decades in order to do their work, perhaps like Mother Teresa or Gandhi. Whether these very special beings exist or not, this is the story of a child who sure seems to have been one.

In June 2004, Maddison ( age 12) was diagnosed with Ewing's Sarcoma. Beginning a month later, she underwent 11 months of chemotherapy, surgery and weeks of daily radiation.

Her father died when she was six years old. During his long-term illness, (since her birth) she naturally grew into a girl with a heart filled with compassion for others. Her selflessness, even in the face of her own disturbing medical situation continued throughout her life. Perhaps, she had a mission to be fulfilled.

The Children's Wish Foundation, which grants wishes for children with life-threatening diseases, offered Maddie anything she wanted.

Did she ask for a trip to Disneyland, or a wish to meet her favorite rock star or athlete? No. This young lady had a completely altruistic wish to make. She wanted to fund a tiny impoverished community school in an African village called Enelerai in the Masai Mara region of Kenya, and to dig a well so that drinking water would be available. This plan was so successful, and so inspiring that others contributed to the point where there was an excess. So, then Maddie chose to put that money towards books, supplies and other necessities.

During her third recurrence, and treatment, which included 80 days of not being able to eat or drink due to esophageal damage, Maddie again took up making her wishes come true to help others. She set up an Ebay account selling jewelry, the income from the sales, she donated directly to Free the Children.

Maddison died at age 15.

"She was everyone's gift," Her mother said. "She had a short life, but such a life! Maybe she had to have a short, forceful life."

***
I look at the picture of the Masai jumping/dancing, and think about those times I used to be able to do such things, and maybe took it for granted. Though I do recall being exhilarated by all the athletic activities in which I was involved. I wasn't much into competition, but enjoyed the sport or dance just for the pure joy of it. I wonder if the Masai dance in remembrance of Maddie?

Today I did a trial run (walk) with my luggage. I don't have it completely packed just yet, but I wanted to see how I will manage, since no one will be traveling with me on the way to Vermont. If it becomes necessary to tote it somewhere, how will I do?

I can see it will be challenging for my shoulder more than my pelvis. I tore the rotator cuff last summer and opted to not have surgery. It took months of therapy to become less painful and reasonably functional, so I have a tendency to guard it. If I do not have other luggage to carry, I may do all right.

I am sure my neighbors, if they were watching, wondered if I have become demented. There's not much chance they already could have thought that, as I live in a senior neighborhood and many go for walks. So, that is not unusual. Walking with luggage dragging behind you is cause for raised eyebrows, though. One can usually tell when it is time to contact a neighbor's relatives. Perhaps someone is wondering how to contact mine. Well, of course, my walks are not being followed with such interest, but I guess my mind wanders into something to make it more interesting. I miss my car and the opportunity to have it take me to other places to walk. I like diversity.

I didn't get very far with the luggage. So, I returned home and decided to go out later. It is surprisingly cool again today, with breezes and gray clouds. Just over the range, the temps are in the three digits, and brush fires abound. Today, in Watsonville, a crashed world war II airplane was discovered when construction workers began clearing a site.

I have been watching the weather reports for Burlington. Looks like it will be in the eighties next week. Tonight's walk was a luxury for me to be in the cool weather. I don't know how I will do in the heat. It is not one of my friends. Well, I should say my body doesn't like it much, only in small doses.

Later, I went out to walk without the luggage, and it was much better, though Mother Nature is sure getting even with me for criticising hot temperatures. It rained! Well, not as heavy as most places in the country where the deluge is being re-born, of course. More like a sprinkle. But, rain this time of year in my region is so unlikely.

I wonder if my Ipod is waterproof? Could I get zapped if it gets too wet? I listened to Tataku: The Best of Kodo, a very upbeat, modern, walk-inspiring album. Dare I say better than traditional Taiko?

2007-07-08T23:26:00.000-07:00

"You know you are living a grateful life when whatever happens is received as an invitation to deepen your heart, to strengthen your ability to love well, and to broaden your hope."

I cried when the messages kept coming about Alex. One after another, the updates came through those last weeks. His mother was texting me. Occasionally, we got a chance to talk on the phone.

My blog dedication today is for Alex and his 4 generational family.

When his wife, Amy called me some years ago, we stayed on the phone until 4 o'clock in the morning. She had a lot of questions, and I was not going to hang up on this young mother of two.

When I went through being diagnosed and treated I didn't have anyone to ask. No support groups either. I don't ever want that to happen to another person ever again. So, I didn't mind staying on the phone with her at all.

Alex had Multiple Hereditary Exostoses, like me. His chondrosarcoma was located in the same spot in his body as mine. He had similar surgeries to mine and just about as many recurrences. I felt an immediate bond especially after we met in person.

Alex's Chondrosarcoma was more aggressive than mine and chemotherapy was part of his treatment. It was able to stem the recurrence for a few years while he pursued a new career, succeeded in getting his dream job, and moved his wife and children out of the crowded smoggy city into Big Sky Montana. He absolutely loved it there and looked forward to the future with a smile on his face and hope in his heart.

I met his wife and children some years back when we both went to a gathering of MHE patients. We stayed in touch by emails and phone calls. His mother joined the Chondrosarcoma Support Group when Alex had a recurrence a couple years ago. His Grandparents also joined the group. I met Alex in person just before my father died (at age 90). His family took me in, gave me a place to stay, as I was far from home when Dad was so sick, and fed me. Alex and I had some time together to discuss in more detail our mutual Chondrosarcoma pelvic issues. He was two years older than my son, but seemed to be as old and wise as a saint. I truly admired how he had handled his misfortunes and turned them into a positive life.

When the time came, his children were flown out from Montana, and brought to his side to say goodbye to their Daddy. It was like he was waiting for them before he could leave this planet. A few short hours after he got to hug the children and speak with them a little bit, Alex died.

I had been wide awake all night, unable to sleep not knowing what was soon to occur. His mother texted me early the next morning. I called her and we both cried. It's a difficult journey to make, when the end result is not a cure. And it is more than disappointing for those of us left to deal with his loss.

Alex was a man of strong faith and integrity. It was what kept him going throughout his challenges. He was a shining example to so many. The world has lost a very special person.

******
I sit at the computer reading the daily group emails. Some are introductory, and welcoming. Some are updates on scans. Some are filled with hopes, prayers and good wishes. It's a good group of people. The kind you would like to have over to visit. We have become intimate friends in the bone category.

Everyday I have something to smile about, frown about, laugh about, cry about. The good news makes us all send emails as we celebrate with chocolate, a glass of wine, or a "happy dance" of gratitude for one of our cyber-friends. The sad news brings on a plethora of condolences and then a few days of "silence", or at least not the camadarie we had been building the week before. Life goes on and other members do have experiences to share. Life and death, suffering and healing all in one day, every day, continually makes me concious of the preciousness of each moment, here and now.

I have waited to honor Alex on this site. I just couldn't bring myself to this point until now. It hit me a little harder than some others in my life. Alex's death still stings. It hurts all the more because I am aware that the chances for anyone with a sarcoma diagnosis has the same possible outcome without appropriately funded research. I have often wondered why I managed to survive, grade II dedifferentiated pelvic Chondrosarcoma with seven recurrences. I'm not stronger, smarter nor more faithful than any other CS patients I have known. I don't eat right, sleep well, and I had a very negative attitude while I was going through my years of CS struggles. Though I have changed quite a bit since then. Why does one person survive and another not survive?

The death of Alex, the loving support the group members gave his family, the tributes to Alex by his co-workers and long time friends had a tremendous impact. His life, his death, seemed to have a ministry by bringing so many hearts together in his memory.

I think it has turned me around quite a bit. Examining my life, and pondering what I am doing, makes my walks a bit misty these days. The rest of the country is in a heat wave and here I am snuggled in my little corner of the world, wearing a jacket and long pants to walk in. The cold feels good to my face and hasn't hit my bones too much. So, though there is joint pain, there wasn't limping. I walked the length of "el barrio" today, listening to Los Hombres Calientes on my Ipod, I always wonder why dogs don't bark or come running out to threaten me.

Time passes so quickly, the fog crawls in shrouding the earth. It's not so hot out anymore.

2007-07-05T19:04:00.000-07:00

Making Art from the Sarcoma Experience…

My dear husband, Scott, has been battling skull base Chondrosarcoma for nearly 4 years now. It has been a difficult struggle for him, for me as his wife, and for our three children. I felt compelled to build something positive out of this situation, so I did what I do best – I made art.

Artist: Eileen Downes

Title: Beauty and the Brain #1

Medium: Collage of torn magazine papers

Size: 30” x 30”

Private Collection

My name is Eileen Downes; I am a California collage artist, known as the artist who “paints” with bits of torn paper for a palette. As a way to honor select US Neurosurgeons, I have started a series of large, bright collage paintings called Beauty and the Brain.

Artist: Eileen Downes

Title: Beauty and the Brain #2

Medium: Collage of torn magazine papers

Size” 30” x 30”

Private Collection

I select top-notch US neurosurgeons from nominations made by patients, caregivers, staff and other sources, and I give the paintings to these neurosurgeons as a gift of appreciation for their skill, compassion, and caring demeanor. The first in the series went to Dr Cully Cobb in Sacramento, CA – my husband’s neurosurgeon. The second was awarded to Dr Ossama Al-Mefty of the University of Arkansas Medical Center. He is known internationally for his pioneering surgical approach to previously “inoperable” tumors. The third painting in the Series went to Dr Chandranath Sen of St. Luke’s Roosevelt Hospital in New York City. It is a great blessing for me to be able to use my creative talent in this way.

Artist: Eileen Downes

Title: Beauty and the Brain #3

Medium: Collage of torn magazine papers

Size: 30” x 30”

Private Collection

I am currently working on the next painting which will be given to a neurosurgeon in Oregon. The doctors are quite surprised when they receive my letter telling them about the project, and that they will be receiving one of my paintings as a gift. I have not met any of them, except, of course for my husband’s doctor. One neurosurgeon wrote me a heartfelt thank you note, but really the thank you goes to the doctors, and the paintings are really from their patients, not from me. You see it is their patients who are appreciative of the doctors’ skill, expertise and care. To learn more about the Neuro-Art Project please see my on-going blog for more details. There was a nice article you can read printed in the local newspaper describing the project.

Artist Eileen Downes presenting

Beauty and the Brain No. 1

to Dr Cully Cobb, Sacramento, CA

My husband had two craniotomy surgeries to remove as much of the tumor as possible…not all could be removed. He then had proton beam radiation treatment in Loma Linda CA.

When he finished treatment, the radiation doctor asked if he wanted to keep his radiation mask for posterity and he replied, "No." But I saw artistic potential in the mask and gladly took it back to my studio where it hung on the wall “looking at me” for two years. I have made it into an art piece embracing the human spirit. See below

Title: Essence of the Shrouded

Medium: Mixed Media

Size: 60” x 13” x 16”

This piece was exhibited in Lexington Kentucky as part of their city’s spiritual art experience where art made by US artists is hung all over town in various places or worship of all faiths. I hope you enjoy looking at my artwork, and I hope it “speaks” to you encouraging and motivating “words.” It is an honor to be given the gift to create beautiful artwork, but it is a tremendous blessing to share it with others.

More of my work can be seen on my web site www.eileendownes.com

2007-07-04T23:47:00.000-07:00

An American President was diagnosed with Sarcoma and it was kept secret. On this American holiday, I dedicate this blog to my very distant kin, Steven Grover Cleveland. 22nd and 24th President of the United States

Remembered as one of the few truly honest and principled politicians, twice President of the United States Grover Cleveland had Sarcoma of the jaw. It is ironic that because of his presidency his Sarcoma was kept secret.

A few months after being in the white house the President asked Dr. Bryant, White House Physician, and friend, to take a look at a "rough place" in the roof of his mouth.

Dr.Bryant took tissue samples to a well respected Pathologist, Dr. William H. Welch of Johns Hopkins Hospital, resulting in malignant sarcoma diagnosis. Immediate surgery was necessary. The next problem, however, was to find a place to perform it without scrutiny of the press. An elaborate plan was hatched.

On June 30, 1893, President Cleveland boarded a northbound train out of Washington DC. If there were any questions as to his whereabouts, the press was to be told he was going to his summer home in NY. Back in those days, even congress had summer vacations. So the President's time away from the White House was not considered unusual.

After leaving the train, then a carriage ride, the President arrived at his yacht located at Sag Harbor. Other asssociated physicians attended,including a young dentist who had expertise in administering the new anesthetic, "laughing gas" nitrous oxide.

Now, this is the part of the story I find so incredibly unbelievable! For every patient I know with a maxillary sarcoma, none have had such a surgery like the President had. Even Grover should not have suffered this indignity!

The President was tied to a straight-backed chair secured to the mast of the ship!

July 1, 1893
The above mentioned chair, and patient, was surrounded by Dentist's gas machine, a standard set up for administering ether, a manually operated cauterizer, tables for surgical instruments, and a chair for another doctor who would monitor vital signs throughout the surgery. The President's mouth was disinfected and rinsed out several times during the surgery to keep him from choking. President Cleveland, because of his girth, was the type who might have complications if he choked.

Keeping his location and the surgery a secret was one thing. But anyone who has performed such a surgery as this, or anyone who has been the recipient may wonder,how did they do the surgery without making an obvious incision? How could this be done without leaving the evidence of an external scar? Well, perhaps I have asked this too late. Now that surgical techniques, and skills are so advanced my question may be uneccessary.

Rather than having to cut a hole in the President's face,the entire operation was done inside the mouth with the help of a dental cheek retractor. The President's friend, Dr. Bryant, excised the entire upper left jaw, from the first bicuspid to just beyond the last molar, and a section nearly up to the middle line of the mouth roof, and back to an apparently unaffected portion of the palate. His was careful to avoid carving into the eye socket. It was imperative that the President's eye continue to appear normal.

About halfway through this procedure, the anesthetist/dentist warned that the Nitrous Oxide gas was about to wear off, so then, Ether was administered and surgery continued.

Dr.Bryant carefully scraped and scooped the surrounding area to remove as many wild fringe cells as possible. The President's bleeding (about 6 ounces) was staunched and the cavity was stuffed with gauze. The operation was completed. Once the effects of the anesthesia wore off, The President was removed from the chair and placed in his bed. Pulse, blood pressure, and temperature all remained within normal limits. Once aroused, he was given one-sixth of a grain of morphine, after that he apparently never complained of pain as records suggest he was given no more medicines.

Late on July 5, the yacht moored at the President's summer home, and he made his way up the private dock.The world was then told he had been treated for two ulcerated teeth, and a recurrence of his rheumatism.

On July 7, the gaping hole left in the President's mouth was filled with a vulcanized rubber prosthesis in the hopes of his being able to restore normal speech.He spent the next several months teaching himself how to talk again and returned to his normal voice, which was the most important evidence of all that would have given away his secret.

Despite his discomfort, Cleveland was back in his office by July 12. Pain did not cease, so on July 17, Dr. Bryant again advised a trip on the yacht. The plug was removed where they found, to their dismay, that patches of malignant tissue were regrowing. With a make-shift gas job, Dr. Bryant again scraped out the President's mouth. After this there were no further recurrences.

"The President of the United States had confronted a mortal enemy and in all likelihood, defeated it for himself--and the nation."

President Steven Grover Cleveland died in 1908, not of his deadly Sarcoma, but of a heart attack.

The operation successfully remained a secret until 1917 when W. W. Keen, assistant to surgeon Joseph Bryant, documented the famous case in "The Surgical Operation on President Cleveland " in 1893.
Note: There have been some discrepancies within my sources as to the whether pathology revealed an Epithelioma, Carcinoma or osteo-chondrosarcoma. Until the final results come back I am sticking to Sarcoma, for the sake of this blog.