From: "Dr. D. Kossove" <doctordee@telkomsa.net>
Subject: Poems and Essays
Date: Saturday, December 06, 2003 11:26 PM

Poems and Essays

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A Gleevec Moment

Things I Have Learned

The Gift of Walking

My Scar. What I Did in Summer Vacation.

 

 

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A Gleevec Moment

Marina

-December 15, 1997...in the hospital, recuperating from a GI resection, and terrified from the news that I had 3-5 months to live to due to metastatic liver tumors.-December 15, 1998...I was in the midst of a 10 day continuous infusion of

DTIC...ambulatory pump, ice packs, zofran.

-December 15, 1999...I was bedridden for the most part, and two months away from enrolling in hospice.

-December 15, 2000...I was bedridden for the most part, but tumors were rapidly shrinking from Gleevec.

-December 15, 2001...I swallowed my morning dose of Gleevec and prepared for the big day. I attended my daughter's piano recital...Advent Christian Church, in Bristow America. Performers ranged from kindergarteners to 6th graders. My own daughter wore a blue velvet pant suit and black plastic slip-on shoes...high heeled, textured to simulate suede, and trimmed in rhinestones. I notice another child is wearing the same shoes. I notice most of the little girls are wearing holiday velvet outfits that I recognize from the racks at Wal-Mart. (In Bristow

America, shopping is either the boutique Wal-Mart or a 40 minute drive to the malls in Tulsa.) Most children hadn't practiced their pieces nearly enough. My own daughter has a natural ability for singing on pitch. She amazes the crowd with her rendition of Jolly Old St. Nicholas, and Good King Wencelas...played from one of those 'big-easy-one-note-at-a-time' piano books, and sung brightly and energetically into the microphone, and of course with perfect pitch.

Victoria, from down the street, struggles with Away in the Manger, while her parents sitting behind me hope that Victoria has learned a lesson about not practicing as she should. The high performance of the afternoon, was offered by

Hannah the kindergartener...shorter and plumper than most five year olds...wearing a pink satin tea length dress...not from Wal-Mart, but perhaps a leftover flower-girl dress from a spring wedding. Hannah sang Silent Night, sometimes on pitch, but sometimes not...that 'sleep in heavenly peace...peace...'section of the song is enough to strain even the most experienced vocal chords. Hannah won the day with the biggest smile, and the least inhibition about singing off-key. Some of the worst music I have ever heard, and one of the best December 15 dates that I have ever had.

Marina

 

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Things I have learned.

Allan 

It is only six weeks since I first heard of LMS. But what an education it has given me. Here are some of the things I've learned so far.

* I found out why God gave us knees. The novelty of ambulating like peg leg Pete or Hop-along Cassidy wears off quickly.

* After criticizing the City of Los Angeles, I found out why they spent all that money to alter the curbs to accommodate the handicapped.

* I changed my reading habits. Two months ago I would have tossed that book entitled "Fighting Cancer" in the waste paper basket. By the way, if you haven't called 800-433-0464 for your free copy, you should definitely do so.

* I discovered all the great people on the LMS support group

* I learned the sad truth that doctors are, after all, only human, and they can't possibly know everything -- especially about LMS!

* I learned about being proactive. Cancer doesn't wait. Neither should we.

* I learned not to let doctors bully me (Well, I'm trying to learn that one.)

* I continue to learn about the Grace of God - and that is the best lesson of all.

Allan 

~~~~~~~~ Allan, Add one more to the things you learned so far. You learned how to Help others. Thanks so much for your email. Maria

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Greetings, Everything I say is "copyright". In other words, you are free to copy it,as long as you copy it right. Allan

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Musing... Six weeks after my diagnosis, well, I had learned stuff also: *Sleeping 3 hours in a row before being awakened by pain is better than sleeping in one hour intervals. Sleeping 4 hours is a veritable miracle.

*Doctors had AGAIN stuffed me up. And were still trying to.

*LMS does not make people smarter or less neurotic.

*I am going to die of this disease soon unless I do something about it.

*How much better I feel physically with the tumor removed from my body, and how grateful I am to the surgeon.

*Both my daughter and my husband are perfectly capable of dealing with their lives, so I do not need to hear any complaining from them whatsoever. AND they can cherish ME for a change.

*How important the List was in obtaining information to protect myself with, and how badly I needed that.

*And how supportive my friends, family, and the community were!

Doreen

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Things I have learned

I want to add my praise for Things I have learned. I'll throw in my recent mantra...."Attitude is Everything."

Marina

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The Gift of Walking

Marina

Seven months ago I could barely walk a few steps. There were two occasions when something happened so that I could not coordinate my right leg. I had to use a walker to move from my bed to the bathroom. Then there was Sti-571, and a very hard journey to Portland Oregon from Bristow Oklahoma, which I fondly call Bristow America. I failed the blood test requirements for the clinical trial the first time, and Dr. Blanke gave me a second chance to pass the test two days later. I passed ever so slightly. Dr. Blanke let me in the trial.

He told me recently during a check-up, that he was tenuous and worried about me starting the trial. I was in terrible condition. And then, some orange pills containing a derivative of 2-phenylaminopyrimidine changed my life.

Tomorrow is the first Oklahoma City Marathon. The event was organized to honor the victims of the bombing of the OKC Federal Building, and the theme is Celebration of Life. In the spring of 1995, I worked in the OU Health Sciences Center Biomedical Building, a mile from the Federal Building site.

From my 9th floor view, I could see the blackened remains of the Federal building, and the boom of the crane covered with state flags from all over the nation. Occasionally the crane would sweep across the dark hull of the federal building, and I knew it was moving chunks of debris so crews could dig for victims. From another direction of my building, I could see the office of the Oklahoma Medical Examiner. The coroner's office had been a nondescript building, but during the spring of 1995, it was surrounded with many refrigerated trucks, law enforcement vehicles and police barricades. I would watch the morbid drama unfold from the 9th floor view of my building. 

The people with whom I worked knew stories about people who had been at or near the bombing site. I knew medical students who were called to work at the coroner's office. And as for me, I was busy collecting data about a mutant protein kinase called cAMP-Protein Kinase. I had a small research grant, and things looked good. What I didn't know at that time was I had cancer. I had never heard of another protein kinase called c-kit. I was growing a deadly mutant form of c-kit in my gut. I was pregnant, I had an American Heart Association grant, and I had a faculty job waiting for me at the Univ of Tulsa. I didn't know that I was approaching one of the most bizarre chapters of my life.

Three years have passed since I learned that I had a rare and deadly form of sarcoma. Only seven months have passed since I learned there was a kinase called c-kit and that a mutant form was killing me. Sometimes when I read journal articles about c-kit, I think back to all those hours collecting data about mutants of cAMP-Protein kinase. It's a period that is a world away for me. I have learned much more since then. 

During the past months I have learned some valuable lessons about human nature, about family bonds, about friendships, about the special magic of living in a small town that I had once hated when I first saw it in 1991. Cancer has brought me some special gifts. One such gift is Kris Wyatt, who tried so hard to give me solace and personal philosophy during my hospice days.

Kris Wyatt runs marathons. I myself have never learned to enjoy physical exercise, but I have learned about the Gift of Walking. Lately I've been walking three miles around the beautiful city lake just a few blocks from my house. Sometimes I can break into a little jog for a short distance. I walk because Kris has asked me to walk a three mile segment of her quad relay team in the Oklahoma City Marathon. My neighbor Carole is an artist who drew the disability runners at the NYC marathon for 15 years. Carole will walk with me in the relay with her sketchbook in hand. 

Tomorrow I will walk past the OKC Memorial where so many people died--the site that was so poignant even from the sanitized view afforded by a 9th floor window. I will walk near the building where I once studied protein kinases. And I will walk with 4 little orange pills channeling down my patched up GI tract. I will thank the heavens for the Gift of Walking, and I will thank Dr. Blanke for taking a risk on a very sick GIST patient. I will thank the army of bio-medical researchers, especially the chemists who figured out how to construct the molecule of Sti-571. I will think about how I used to collect data about a mutant protein kinase, and how I am now a very successful data point about a different mutant protein kinase, and how there seems to be some kind of symmetry to that situation. I will think about the bombing victims, but mostly I will think about my orange pills and army of people who have rallied around my life, some who are close to me and some I have never met and who have never heard of me.

These people have one thing in common--they have brought me the Gift of

Walking.

Marina

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My Scar. What I did in Summer Vacation.

It is interesting how different surgeries affect us differently.
I felt scarred and marred and unfeminine after the hysterectomy in the mid 90's...which was a bikini incision, almost unnoticeable.

BUT I felt quite proud of my thoracotomy scarwhich is long and covers quite a territory. Maybe because of my friend Ahem [name withheld], who is a real tough cookie, let me tell you...she repairs cars, repairs computers, smokes and drinks [stopped a lot of that lately, thank God], gets into fights [especially when she drinks], likes fast driving and is a general all around tearabout... works as a topnotch bookkeeper. She is smart, a bit paranoid, and has an active nightclub life since her divorce. 


She actually FOUND me post-op...I had taken a room in a Durban hospital under my married name, and didn't tell anyone outside the immediate family the hospital or the name. When I am sick I like to be in a cave with a boulder rolled against the opening. Only two people successfully did the detective work to find me...which was to call every hospital in the areas, and check with my name and my husband's surname, both. She was one
of them.

I was actually surprised to see her. The last time I had significant interaction with her was when I came with the cops and ambulance at her drunken suicidal telephone call...she has a lot of guns in the house, too, I forgot to mention.

Well, she got so mad at me when I was there, that she doored me. She caught me between the door and the wall and kept pushing. I was caught awkwardly, and couldn't extricate myself. I was stiff for weeks from the sprains.


Boy was I pissed at her. Evidently she didn't like the choices I was offering her.

Anyway, there she is, at the foot of my bed. I decide, since she isn't my patient anymore since the dooring, to let her see the scar. She has an avid interest in medicine, too, BTW.

So, I uncover and show her the curve, from top mid back, to halfway down the chest, around and under the breast, in a kind of elliptical beautiful L curve... Anyway, I showed her...and I looked at her to see her reaction. 


Now this curve shows you that my left forequarter was essentially tipped up
and opened up my chest widely.

And Ahem is a tough cookie, mind you.

She looked sick. Just sick.

I dropped my shirt, and said, he got in and got everything out. I am very grateful to him, and the curve is the nicest curve on my body. If I survive it will be because of this incision. 
After that, I was rather proud of my scar. If anything could make Ahem look sick, it must really really be something.

It was then that the scene from Jaws presented itself to my mind.
[You know, where the college professor and the sea captain are comparing scars from shark bites. Only I'm in it, too.]

The only time that I felt sick, like Ahem looked, was when I saw what a forequarter amputation looked like. I could have had that, lucky me.
So I rather like my scar that curves from back to front. It gave me life as well as status.
It only took away bad stuff.

doctordee 2001

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