The best and worst thing in my life

The best and worst thing in my life

By Rachel Baumgartner
February 24, 2009

Almost five years ago I found out that, statistically speaking, I had weeks to live. No one in the world had ever survived a relapse of my type of cancer following a stem cell transplant. Despite this, I have always said, “Cancer is the best and worst thing that has ever happened to me.”

People always understand the “worst part”: the surgeries, relapses, chemotherapy and its side effects, rumors flying, and death constantly lingering in my shadow. The element that seems to perpetually puzzle, however, is the idea of a best part. Let me attempt to explain.

The year was 1998 and I was a typical 15-year-old sophomore in high school, minding my own business. Being the starting three-pointer shooter on the JV basketball team, flirting with boys, and shopping with friends took up most of my time. Perhaps I was “too normal” and needed more excitement in my life. My whole back had begun throbbing earlier during the fall field hockey season. After a visit to the pediatrician, we were assured it was attributed to my heavy backpack. Months passed by as I wheeled my backpack around school. Life felt normal, despite my back hurting more each day.

On December 4, a Friday, I woke up early for the usual 6 a.m. basketball practice.  As I got out of my bed, my legs had the sensation of feeling asleep and would not wake up. Although, I was mostly worried about missing the big basketball tournament game that night, I was also scared and agreed to see a doctor at St. John’s Mercy Medical Center. After all, my chest was slowly losing feeling too. After an MRI, my mother and I came back to the neurologist’s office and immediately, he did the old “Let’s sit down” talk.

He showed us the scans and had emergency surgery lined up as my mother cried softly across the room in her chair. While comforting her, I thought, “Well, I will just accept whatever needs to be done and do it to get better!” My optimistic thoughts lacked any tangible reference point as to what treatment would entail. My second thought was worrying about letting my basketball coach know that I would miss our tournament game that night.

An egg-sized tumor was strangling the upper section of my spinal cord. My breathing was already being suppressed and shutting down my body by the hour. We met Dr. Bergamini, better known by his adoring patients as Dr. Bob. From Day 1, he became a second father who treated me like an addition to his already adequate brood of five.

As I lay in the bed hooked up to IVs, I studied this man who had an immediate and long term plan to save my life–if I survived this emergency surgery. His tired eyes were very loving and he had driven back to the hospital on a Friday night to meet with my family. I could sense that he was a special person and I decided to trust him. With his relentless, caring, and knowledgeable approach, Dr. Bob became the first good thing in my whole experience. Then came the fact that I did not die that weekend, which was a very real possibility.

The positive: after the surgery I regained all feeling back in my body and suffered no paralysis. The negative: I was diagnosed with Askin’s Tumor, a very aggressive, rare and relatively unknown type of Ewing’s sarcoma cancer found in only three to 30 people worldwide each year.

After the surgery my hospital room quickly turned into what looked like a florist and stuffed animal store all in one plus 57 Mylar balloons of all shapes and sizes floating above it all. At times, I had my whole field hockey or basketball team squished into the tiny one-person room. At the beginning, it was like a circus in which you just never knew who or what was in the next act.

Chemotherapy began immediately and for five sluggish days in a row I would have a combination of drugs that dripped through an IV all day. One of the drugs, Adriamyacin, was a juicy dark red one in a syringe as fat as a drinking glass. It was so nasty that it took distracting me just to administer it.

My friends became excellent at skipping classes to visit me and my high school even encouraged it. During my first chemo, I still remember sitting on the floor playing Barbies like a little girl with a friend. Another time a new group of guy friends showed up mid-day with a bouquet of fresh flowers and just acted goofy. I prefer to remember these instances to the ones of laying in a dark room. Nevertheless, the hard memories seem to have a way of haunting me.

Every night I would go home with an ugly blue IV backpack that flushed fluids into me. It felt so murky inside my body that I dubbed the drug-induced state “Fogland.” Fogland–and the puking that it included–remained until late each night when the drugs diluted a bit in my body. At these times I would stay up late because the sooner I went to sleep, the sooner I awoke which meant more chemo that would make me sick for weeks to come.

I missed school the week of chemo and then the next. Days were filled with lying in bed and going to the doctor for blood transfusions and leg shots to boost my blood counts that chemo had killed. I would have one “ok week,” which meant attending school in the afternoons, and then it was time for chemo again. With so much time missed, attending school became awkward at times; most teenagers are not sure how to react to a “sick cancer girl” and some became overly nice to me.

Before this, at my all-girl Catholic high school, I had been just “one of the girls.” Now I was a bald, weak, skinny girl with splints on my ankles and feet and what looked like a basketball game plan in marker on my back (to line me up with the radiation machine). It all stirred rumors that I was dying and I think my situation was scary for a lot of people.  I cannot really blame them though, I can only imagine not knowing how to react if the roles were reversed.

My class also came together to organize dinners for my family three times a week and saved up money to buy me a TV/VCR for my bedroom.

After the initial craziness died, it was the real friends that came over to watch movies on Friday nights instead of going to the latest house party. They were also the first to drive me to the house party, when I felt up to it and then if it was not fun, we could leave and say, “Well, Rachel does not feel good.” One must take advantage of such little perks-that some in the cancer world call “pulling out the Cancer Card.”

In March and April of 1999, I had six weeks of radiation interlaced with the chemo.  A strong memory comes to mind during one of these chemo weeks when I had radiation, too. I stepped out of the car with my IV backpack weighing me down and vomited into the bushes on my way in and proceeded on like it was a normal occurrence. I wondered if it all would ever end and if milk would ever taste good again. The chemo made my beloved milk taste like it was spoiled at all times.

Another positive event included my bald head because having grown up with long straight hair, I secretly always wanted to know what I would look like without it. So my wish was granted and my brother vacuumed my pillow religiously every night until it all fell out. Being a natural artist, my bald head became a challenging canvas–for painting designs, airbrushing, glitter lotion and more. My thought was that if people were going to stare anyways–as most did–I might as well give them something to see! My junior year Fall Ball dance led me to paint hot pink stars all over my head.  I showed off my head to the onlookers as I momentarily danced away any thoughts of my illness.

After a full year of baldness and chemotherapy, I had somehow kept up with my classes with the help of teachers and friends. I was gladly done and ready to be a teenager again. My amazing family had gotten through the tough year victoriously and had done every step of it together. It was hard to adjust because people assumed that my life would go back to the way it was pre-cancer and once again I would be normal; whatever that means. I constantly struggled with feeling older than my peers and that was (and still is) challenging.

The year of 2000 I was one of two young adults chosen by my church to go to Rome, Italy. We attended the Catholic beautification ceremony of Blessed Chaminade, founder of the Marianist community of priests and brothers. He was beautified after a South American woman who prayed to him was miraculously cured of her lung cancer. While in Rome, pain pills got me through increasing pain levels and my faith was strengthened as I prayed to God and Blessed Chaminade for a healthy life.

In December of 2000, stem cells were taken from me to store in case I relapsed.  While studying them, cancer cells were discovered and my whole body was under attack again. It was very discouraging but with the help of family, friends, doctors and God, I was not ready to give up this easily.

To embrace a new chemotherapy regimen and anticipate baldness, I ran to the drug store with a friend, bought some cheap hair dye and we bleached my hair, which is naturally very dark brown. It ended up turning an outrageous orangey-red color.  Since it was so hideous, it could not have fallen out fast enough!

For the next five months, I was more IN than out of the hospital. If I had thought the first year of chemotherapy had been bad, I realized it was nothing compared to this. I was highly sensitive to the new drugs and endured horrendous cramping in my abdomen that the pain medicine could not touch, volatile puking, and explosive diarrhea–the works! On top of it, fevers and infections would develop in my blood and that isolated and hospitalized me even more.

During one of these stays, Randi, a fellow cancer patient and close friend, was in the ICU. She was fading quickly from a courageous fight with a cancer similar to mine.  Somehow in the midst of the chaos with my body, for a couple hours I was able to sit up and ride down to her room with all my IV poles. In her last hours, we had a very special last night together. We all knew (and she knew) that her time was limited. I will never forget when she looked at me over her oxygen mask and forcefully told me, “Rachel, I will keep fighting in heaven and you must promise me that you will never stop fighting for all of us on Earth.” I have never broken my promise.

I missed the second half of my senior year of high school. With extra credits I had taken before getting sick, I somehow graduated with my class, got into the School of Architecture at Washington University in St. Louis and several other schools, had a serious boyfriend, and kept up with friends during this crazy time.

A new batch of healthy stem cells was taken from me in May of 2001 to prepare for my stem cell transplant. My doctors barely allowed me to walk at graduation, because three days later I was admitted to St. Louis Children’s Hospital for the transplant. The night of graduation I found the energy to bounce around (literally) at the senior all-night event-one last hurrah before I was put into isolation for most of the summer. Looking back at pictures, I seemed to somehow have more energy than most of my friends. I guess that is what being in the hospital so long and adrenaline can do to a person.

Stem cell transplant admittance led me to one of the most intense regimens of chemotherapy that exists. It successfully killed my entire immune system like it was supposed to and brought me as close to death as possible. A few days later a hand-pushed syringe put my previously frozen stem cells into my IV in order to hopefully grow a new healthy immune system.

At first, I was doing as well as one can expect-even enduring the mandatory showers every six hours. These were necessary in order to rid the body of one of the chemotherapy drugs that leaves your body by secreting through your skin. Then the day came that I threw up so hard it projected onto the wall behind my head. From there, most things are blurry. My ENTIRE body started peeling horrendously–this included fingernails, lips, and tops of my feet. Even my insides produced buckets of junk through a tube up my nose and down my throat. I was burning from the inside out. Late one night, we had a special delivery: a noisy new bed usually reserved for burn victims. My loving dad sprung out of bed, strapped on a green and white umbrella hat, donned a Hawaiian luau shirt and huge clown glasses. We had an impromptu party for the new bed! There is nothing much you can do in situations like this but have fun with what is before you.

Well, as if that all were not enough, I soon started hallucinating and they discovered I had two extremely serious infections. I was transported to the ICU as my body went into septic shock. The doctors “brought out the big guns” as they put it (the strongest antibiotics), and along with my tiny immune system, I once again surpassed all odds and pulled through. Later on doctors have told me I am one of the sickest kids they have ever seen that did not die!

I learned to walk and eat again, something I had not done in months. I slowly strengthened my skeletal figure. My spirits were hopeful even though everyone my age left for college. I learned to enjoy each day and whatever came along with it. I also started doing more charity work and traveling to see friends at college.

Small setbacks were part of the norm. One day in June 2002 in typical “Rachel fashion,” my gall bladder had to be removed. I went to a concert the next day and discovered a severe case of shingles in my right eye the next. Going to college orientation with a swollen eye, a wheelchair and an IV sure was an adventure–thank goodness I had a friend along!

Fall came soon enough and I ended up starting the architecture program at the University of Kansas (Washington University had proved to be too expensive and KU offered many scholarships).  No one believed I could be “that girl in the wheelchair” at orientation. I excelled in my classes and met some lifelong friends, and was able to touch a few with my story.

Once again my body was screaming at me that something was wrong. I tried pain medicine but it was all too much and I was constantly nauseated, dizzy, and sleepy.  Struggling to keep everything together, I made the decision to move back home.

The day after Thanksgiving, we learned a new Askin’s Tumor was fighting my body between my heart, lung, pulmonary artery, and spine. There was not much else to do at this point. We had exhausted our options and my weak body had maxed out on my lifetime doses of lots of chemotherapy drugs and radiation. Furthermore, surgery did not seem promising at the time.

This was when I asked Dr. Bob, “How long do you think I have?” He looked at me with those deep eyes explaining that he did not know, but maybe weeks to a few months at the most depending on what organ was invaded first. He told me whatever I did was my choice and there were no wrong choices. He believed in miracles and had even seen some.

Hearing this statement made all the difference. There was hope and I decided to try for the miracle route! I would live each day and not pursue treatments since there really were no viable options at that point. I was also sick (pun intended) of most of the treatments even if they had been available to me.

This was when my love for art and poetry really took off. Doing creative things became my way of leaving myself behind if I passed away. Traveling became something else I dove into deeper while trying to see places and friends. I made it to points all over the Midwest and got a taste of college. My goal was to continually have something to look forward to so I could strive to stay alive for that event.

A lot of my friends continued to stick by me, but I noticed that others distanced themselves. I also became aware of the toxic people in my life and realized that if my time was limited, it was wasted on them. This time less cards came to our house and my family received few encouraging words. I think some did not know what to do or say. On top of it all I despised the thought that if I died, I would become another statistic.

Three months passed and I seemed alright even naming the tumor Spanky. I came out of the fog I had been living in and said to myself, “Wait, I guess I’m not dying!”  I got a job at an art materials store, started dating a fellow cancer survivor and got on with my life!

In the fall, a whole year with Spanky having passed, I was still alive as can be but was experiencing more pain. To help, I received three very low doses of chemotherapy. In December, a PET scan showed little to no activity in the tumor region. Another scan in January confirmed the same results.

During the entire time, my doctors scoured the globe for options from clinical trials to radical surgeries and new radiations. It seemed the expert doctors and researchers were not willing to help or did not feel they could do anything. Some of them said I should be on hospice or trying to remove the tumor would kill me anyways, so what was the point. In any case, I definitely would not be cured in their eyes. No one else had ever survived my cancer after it reoccurred after transplant.  Out of everyone, my family and Dr. Bob never gave up hope and I pleaded with God and Blessed Chaminade.

By May of 2004, an amazing thoracic and cardiovascular surgeon, Dr. Blucher came from the East coast to St. John’s. He considered my case and wanted to take Spanky out. While meeting with him, he answered all of my questions before I asked even one. I knew right away he was the one for the job! We decided to take it out the next week.

Surgery went very smoothly as he removed all of Spanky which by this time was the size of a small Nerf football. It had grown to capacity and sat snugly against my fragile organs. Somehow, it miraculously had not invaded any of them though! I thought of Randi, as I often do, and recalled my promise to keep fighting for her and my many friends now in heaven.

The tumor’s biopsy results showed the tumor had completely died inside me with very little treatment. We could not have been more ecstatic! In medical terms, it is a complete miracle and very unexplainable. It has been three years since that surgery and I am the only known case to survive a relapse of Askin’s Tumor following a bone marrow transplant.

It is so remarkable that the Catholic Church and the Vatican are doing a formal investigation into my miracle. Church officials are strongly considering using my case to make Blessed Chaminade become a saint because of my prayers and those of my family and friends! (He would be the first Marianist to become a saint.) It is crazy to think they are talking about little me in the big Vatican. From time to time, I will get a call that someone important is coming to St. Louis to meet with me about this, and I never know when so I try to be on alert! I find great joy in seeing the positive sides of everything I have been through.

In April of 2005, I was asked to speak at the biannual conference in Los Angeles of pediatric oncology doctors from the U.S. and Canada. I was able to essentially stick out my tongue at the “experts” and say, “Haha, I survived without your help!” Well, this really means I politely gave a speech about my journey and shared some of my poetry and artwork.

Last summer, my efforts took me all the way to Denmark to help with a bike ride to give global awareness and raise money towards sarcoma cancer and research surrounding it. Another positive example out of many is my recent trip to Washington D.C. where I talked to Congressmen about cancer funding. I found out one of the Missouri Representatives I met with cosponsored the new cancer act!

I have found a couple of friends seemed to have issues with adjusting to “post-cancer Rachel.”  It is like they got to know me when I was sick for so long that it was hard for them to see me outside of cancer. Some were able to work through that and one or two slowly drifted apart from me. Now more and more people, including my current boyfriend, only know “healthy Rachel” instead of the “sick cancer girl.”

I try to balance all the cancer advocacy and events in the cancer world with all the non-cancer things like school. It is something I am constantly tweaking and configuring. I have accepted that cancer will never leave me. It is embedded in me with what it has left behind, physically, mentally, emotionally and spiritually.

Cancer is the absolute best and worst thing that has ever happened to me. Because of it, I am driven to become an art therapist and continue helping others through my speaking, my writing, my art and volunteering. As Albert Einstein once said, “There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” I choose the latter.

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