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About Victoria |
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My
Story
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WHAT HAPPENED
I was diagnosed with chronic myelogenous leukemia on December 7, 2000. It was totally unexpected. I was 47 years old.
I had applied to a long-distance learning program designed for working audiologists leading to a doctoral degree. Not only did I want to learn more about recent advances in my field, but there was an element of pride involved. My younger brother Frederick was getting close to completing his doctorate, and in my extended family of academicians, there is an implicit pressure to achieve ones "terminal degree". The application process to the AuD (Doctor of Audiology) program required a physical examination, and some lab work to verify that I had had certain childhood diseases.
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The physical went very well. My doctor declared me to be in excellent health, and drew some blood for the requisite blood studies. Three days later she called me and said, "Victoria, your blood results have come back, and I have double checked them. We have to repeat the labs, but it looks as though there is something very wrong with your bone marrow." My white blood count was 28,000 (the normal range is 4 to 11,000) and my platelet count was one million four hundred thousand (the normal range extends to 400,000). She told me the name of the disease—she thought I might have-chronic myelogenous leukemia, CML for short. Then, with shaking hands, I took notes on the phone call, writing down "chronic myelogenous leukemia", putting this sudden and devastating diagnosis down in black and white. |
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That night my husband and I opened Pandora's Box and scanned the Internet for information about this relatively rare disease.
What I remember seeing was this:
- acquired genetic accident
- chromosomal translocation between 9 and 22
- Philadelphia chromosome
- fatal: life expectancy 3-5 years
- only one cure-bone marrow transplant
- high chance of mortality with BMT
- remission with Interferon alpha/AraC. |
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REACTING TO DIAGNOSIS
While I carried the knowledge of a life-threatening diagnosis, I tried to "press on" with my life as a wife, mother, audiologist and parishioner. But, knowing full well that "life is short", I did do a few things that were out of the ordinary. For example, I followed the instinct to get my picture taken, wanting my children to have an image of what their mother had looked like "before" treatment for cancer. I kept a journal of quotes and phrases that articulated my experiences, and I started making intricately pieced quilts to portray what it was like to experience a devastating diagnosis at the prime of life.
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ANYTHING
FOR CURE
I became single-minded about finding a cure. I learned that bone marrow transplantation was the only "cure" for CML, but learned that it is risky, with difficult side effects. Interestingly, during the same month of my diagnosis, December, 2000, the American Society for Hematology, had announced the impressive preliminary results of an experimental drug called Gleevec. Gleevec, developed by Novartis Pharmaceuticals, was revolutionary in its approach to target only diseased cells, and had reversed the course of chronic myelogenous leukemia in early trials. The drug was heading for FDA approval, but when I was diagnosed, it was only available through clinical trials in a few select centers. Getting into a trial became my primary focus. I wanted that drug. |
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IN
BY THE SKIN OF MY TEETH
I was one of the last patients accepted in Novartis Study # 106, a Phase III study at New York-Presbyterian Weill Cornell Medical Center comparing Gleevec with the traditional treatment of interferon-alpha and AraC. There was a 50-50 chance of being assigned to the group receiving the heralded new drug, but I was "randomized" to the interferon group. Within weeks of treatment with daily injections of interferon, I suffered such extreme side effects that I was switched to the group receiving Gleevec. |
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LUCKY
It seemed like a miracle--being diagnosed with this rare type of leukemia just at the time that there was a major break-through in its treatment, and then to be among the few around the world to make it into a clinical trial. I rode that wave with a strong, grateful spirit, and Gleevec gave me a "major cytogenetic response" within six weeks after I started taking it. I felt great, and the only side effect I had was puffiness around the eyes. For most CML warriors that is the end of the story. Gleevec has been shown to convey a "durable response" with few side effects. Some believe that, with Gleevec, CML will behave more like a chronic condition than a life-threatening disease, and eventually CML will be completely eradicated.
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| NOT SO
LUCKY
At the same time I learned that Gleevec had given me "major cytogenetic response", other blood test results were ominous. Only 1% of those on Gleevec had shown effects on the liver, and it turned out that I was among them. My physician, Dr. Michael Schuster, advised that I discontinue Gleevec to give my liver a chance to recover while we carefully investigated other possible causes of liver toxicity. Gleevec was re-introduced three times after my liver function had returned to normal, but the numbers sky-rocketed whenever I took it again. I would not be able to take the miracle drug, and the other alternative, interferon, would greatly compromise my quality of life.
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CASTING
A WIDE NET
I believed Dr. Schuster when he told me that there were other avenues to investigate, and that there was reason to maintain hope. Among the options, he suggested that we "cast a wide net" and look into the possibility of bone marrow transplantation. He wondered whether any of my five siblings would be a match, because that factor greatly enhances the chance of success. As it turned out, two of my sisters were perfect matches, and ultimately my sister Cathy was identified as the ideal donor.
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PREPARING FOR BONE MARROW
TRANSPLANT
In the months leading up to transplant I put every part of my being into preparation for the difficult procedure that would cure me of CML. I was intentional about doing whatever I could to get ready. I sought spiritual direction, created quilts, spent time with my family, got into good physical condition, learned yoga with other cancer survivors, wrote "musings" about what I was experiencing, put on a little extra weight, and got all of my "affairs in order". I dragged my children, Joanna and Jordan, to have a family portrait done just two days before I was admitted to the hospital. Most of all, I was under girded with faith in a loving God, and trust that "all will be well", no matter what. I prayed, and yielded myself to the exquisite care of my medical team, family and friends.
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GATHERING SUPPORT
It was a monumental task to prepare for a journey that would take me down to the very core and then to begin to be built up again, cell by cell. There was no way to predict whether I would be among the survivors, or would die trying. If I did survive, would I have debilitating side effects that would seriously compromise the quality of my life? All I could do was hope, hope, hope......
I fervently believed in the power of community to uphold me and my family, and turned my faith community of St Martin in the Fields Episcopal Church in Chestnut Hill. We called together a group of 11 who would walk every step with us, praying and doing what was needed. I literally rode on the wings of this group, the Psalmists. One of the Psalmists posted a psalm and a poem each day, beginning at day 40 when the group was formed, counting down to day 0, the day of transplant. Then he continued on to day 100.
It was a great comfort to know that all of us were praying and meditating on the same words, every day. A picture of the Psalmists is on the "Sponsors and Dedications" page.
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BONE MARROW TRANSPLANT
I entered New York/Presbyterian Hospital on June 24, 2002 and underwent a "conditioning" regimen of total body irradiation and chemotherapy to wipe out my diseased bone marrow. Then on July 1, I received my sister's healthy stem cells and began waiting for engraftment. That all happened, without serious complications, although my hospitalization lasted nearly two months. A journal of the transplant can be found in this website under "BMT Journal" |
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CURED
Is there ever a cure for cancer? If there isn't, please don't tell me. I believe that when my diseased marrow was wiped out and replaced by my sister's stem cells, I got a good, complete re-start. The photo shown below is of me and my husband Greg at the annual bone marrow transplant alumni cruise hosted by New York/Presbyterian Hospital almost one year after my transplant. My children, husband, sisters, and sister-in-law all joined fellow survivors, physicians and staff of the BMT program, in the spectacular celebration of life and survival. There's just nothing like a boatload of survivors.
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POST-TRANSPLANT SIDE EFFECTS: THE GIFT OF LIFE COMES AT A PRICE |
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VISION
About 9 months post transplant I began to experience a clouding of my vision, particularly in my left eye. There was an "aura" around light at night, and I was having increasing difficulty reading road signs, recognizing people, and reading. I was found to have bilateral cataracts, most likely a result of irradiation. In addition to the blurred vision, my left eye was constantly irritated, and my right eye teared excessively.
I made frequent visits to Dr. David Kozart of the Scheie Eye Institute to try to unravel all the eye and vision issues. Cataract surgery on my left eye had improved my vision considerably, but the filaments and irritation in that eye made it difficult to keep the eye open without squinting. The cataract in my right eye was worsening. I was unable to read books or music, sew, or watch TV or movies. I could not recognize people if they were more than six feet away. It was a miserable situation for me.
Mindful of how compromised I had become by "dry eye" in my left eye and remaining cataract in the right eye, Dr. Kozart advised me to move ahead to operate on the right eye. I groped through the holidays with the help of my teenaged children, and the surgery done in January was completely successful. Having my vision back was a tremendous gift, and I was finally able to see clearly. What a gift!
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QUILTS EXHIBITED AT 2004 BONE MARROW TRANSPLANT MEETING
I was invited by Alan Leahigh, Executive Director of the American Society for Bone Marrow Transplantation to be the featured artist at the 2004 Tandem BMT meetings of the IBMTR/ABMTR and ASBMT held at the Coronado Springs Resort in Orlando, Florida. As the story goes, Alan's wife is a quilter and he had tuned into my quilt, "All Will be Well" on the cover of the 2004 "Celebrating Life" Calendar published by the bmtinfonet. Over the course of my illness, transplant, and recovery I had created 12 narrative art quilts that chronicled my journey. He asked if they could be displayed as a group for the first time in the lobby/café area between tandem meetings. At the end of our phone conversation, I had to ask, "is this conversation for real?" He said "yes". To have some so good come out of something that had been really pretty bad was the stuff of a miracle.
Over the next two months, with the help of my friends, I prepared the quilts, wrote the captions for the exhibit, created this website, and had greeting cards made of several of the quilt images. My sister Anastasia and I were given a table in the exhibit area where we talked to attendees about the quilts and the importance of art in healing.
The quilts were beautifully displayed and well received and in the lobby/café area by participants going to and from meetings throughout the day and evening. I was astounded by the passion and level of commitment of the physicians, nurses, and coordinators, who are a "working group", eager to learn about new advances to benefit their patients.
I also got to know a group of advocates/survivors, including Sue Stewart, Bob Beatty, Jay Feingold, Art Flatau and Myra Jacobs who are dedicated to providing information and support to transplant patients and caregivers.
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THE GIFT OF LIFE COMES WITH A PRICE
This is the title of study presented at the stem cell transplant conference in Orlando FL about some long term side effects of BMT. Interviews of survivors and spouses of survivors who were disease-free revealed that among the survivors there were physical problems, sleep difficulties, and mental processing problems. Survivors and spouses reported fatigue, sexual and emotional difficulties, as well as depression. Significantly, the spouses of survivors reported loneliness, and did not experience the new appreciation for life that the survivors experienced. Michelle Bishop Ph.D, who presented the study, says, "Clearly substantial proportions of both the survivors and spouses are hurting, even years later". (Newsletter, bmt infonet, April, 2004. www.bmtinfonet.org)
I point this out because, two years out of transplant, "alive after all", and disease free, I continue to be challenged by the effects of the disease and transplant. I have been built up and I have been stripped down. The balance is always on the side of life, and I experience tremendous gratitude for the gift of life, but struggle with the things I've lost, including my marriage, financial security and robust health. As one problem ran into the next, one of the Psalmists gave me her "it sucks to be me" button, just for a little while, to acknowledge that life really was difficult for a time. It does not really "suck to be me", and the button now passes between us, depending on who is facing adversity.
In some ways I feel as if I have been through a "refiner's fire", and am left with a pure inner core that needs to be reclothed with great care. That is my task now as I nurture my children into adulthood, return to my profession as an audiologist, honor my experience as a survivor, strive to be a "good steward" of the artistic gifts of expression that have been given to me, advocate for others undergoing transplant, and grow into what I was meant to be. Alive after all.
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TWO YEAR ANNIVERSARY
These photo's of Dr. Schuster with our family were taken at the bone marrow transplant alumni cruise hosted by Dr. Schuster and the New York Presbyterian Hospital Bone Marrow Transplant Program. Unlike last year's cruise where I was accompanied by a large group, including my sisters, husband and children, this year we were a party of three; my daughter Joanna, my son Jordan, and me.
As a threesome we have survived a multiplicity of challenges, and we continued to be strengthened by each other's spirit, living in hope and promise. Grace continues to abound. |
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TERMINAL DEGREE
In June, 2004 my brother Frederick earned his doctorate, and his "terminal degree" was won at last. Even though I had intended to have my doctorate too, I had been taken down a different path, in some ways more difficult, in other ways less so, but finally to emerge on the other side with my brother in celebration of sheer tenacity. |
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