Funny Blood: A Story of Love and Cancer

All text and images copyright Christopher Case and Karin Weidenhammer


Ultima Vez Modificado: 28 de julio del 2002

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(November 16, 2000) I was 24 years old when I was diagnosed with Acute Myelogenous Leukemia. I was working as a medical assistant when I started feeling something other than normal, so I was able to draw my own blood. I sent it to the lab for processing. The next morning, I read the results. My blood was consistent with someone with leukemia. Four days later, I began chemotherapy.
The day soon came when my hair began to fall out. Chris would stand beside me at the shower as I handed him fists full of hair. I opted to shave my head because so much was falling out that it covered my bed and my body.
I have no idea why I didn't cry when I saw my new baldness. To most people baldness is the sign of sickness. I never did see myself that way, as someone with cancer. And, so I was told, I had a beautifully round head.
Hour after hour we sat, paced, and amused ourselves in any way we could, restricted to a sterile, monotonous corridor 50 meters long. Separated from the world by glass on our left, an airlock on our right, and 13 floors below, we were isolated from the dirty world around us.
Our mood was not somber. Perhaps because of our high state of denial, we had fun. At one point, the balloons and stuffed animals and cards and toys I had received overwhelmed my room. Because Chris was still working in another city, he would come and go often. There was never a more exciting time than when he returned. He brought optimism with him.
There were times when the nausea and pain were unbearable. The alternative was the sedation and grogginess associated with pain medication. At least I had my friends there with me.
After 4 weeks of confinement within the sterile environs of my room, I was allowed to venture through the hospital, as long as I wore a gown and mask and refrained from contact with other humans. It was a dream come true. Rubix cubes and gin rummy could only entertain us for minutes at a time. A ten-minute walk through the deserted halls of Jefferson hospital left me breathless and tired, scared but extremely excited. I felt like a kid sneaking around a place they know they shouldn't be.
I remember feeling very strange and very out of place when I visited the cafeteria. The doctors had convinced me that other humans were dirty, that the world was a very dirty place, and that I was taking a chance by even being within what to others was an average, ordinary place. But I went because I needed to slowly separate myself from the safety of my bubble, my room.
I became my own gift. I was still alive and still capable of feeling happiness. Denial became a very potent defense. After 29 days, I was free to go.
(January 2001) If my doctors had seen me do this, they would have escorted me back to my room on the 14th floor, to keep me penned. Who knew that trees could be killers? They harbor fungi and molds that pose a lethal threat to someone with virtually no immune system. Far from the people and the filth of the streets of Philadelphia, the forest seemed so clean and inviting.
At home, I assumed the role of doctor. Because my immune system was still severely compromised, I had to inject Neupogen every day. This drug stimulated white blood cell growth to help boost my disease fighting capabilities. I was rebuilding my body and my immune system so that it could be obliterated once again.
The excitement of being home quickly diminished. Not only did I begin to take it for granted, but I slowly learned how few things I was going to be able to do. Once again, we were left to our imaginations to entertain us. Without responsibilities, without a job, living at home with parents who couldn't stop from spoiling me, I regressed. Chris and I became kids. He began to challenge all of my childish skills.
I returned to the piano that I concentrated on as a child. You cannot entertain yourself with crackers forever.
Worse than being bald, worse than having my head shaved, was having the wig styled to look like my old hair. It didn't work. And, I soon realized it only served to hide the label I now carried as a person with leukemia. This was not something I wanted to do. I found the bandanas much more comfortable and myself much less self-conscious when wearing them.
Our minds were rarely sad. We strongly believed and often reminded one another that sadness did not fight cancer. Perhaps the best reminder to both of us and to everyone that was affected by the situation, were our frequent displays of silliness, our capacity for normal behavior under abnormal circumstances.
(March 2001) I returned to the bone marrow transplant unit, now my second home. This time I would undergo a stem cell transplant to give me my second life. My body was prepared for transplant by having its immune system erased. The hope was that this would eliminate all cells that were dysfunctional, in turn, leaving a hole in which donor stem cells could make their new home.
Unbelievable as it might seem, rabbits were used to help doctors destroy my old immune system. Certain cells of my immune system were placed in a rabbit that recognized these cells as foreign and labeled them as such. These labeled cells were then placed back into my body to completely destroy what was left of my immune system. The reactions were so severe that I began to shake uncontrollably. The "bunnies," as they became known, were literally hopping inside me.
March 7, 2001, Day of transplant: My brother, who was my donor, had given his stem cells over the previous two days while I sat and hallucinated from the narcotics I was receiving-"bunnies" were extremely painful. The greatest fear post-transplant would be that his immune system would react against its new host. I was so dazed from the chemicals in my body that I feared nothing. From my perspective, it was, in fact, a rather anticlimactic event. Little did I know that I had just been reborn.
A mother is always more tired than her newborn.
Within three weeks, I had returned home. And Chris was still coming and going.
The fear that my new immune system would attack me turned to reality,although the attacks were not severe. I was treated with prednisone, an anti-inflammatory, in such high doses that my face began to swell. Chris would not stop photographing, even when I objected. Swollen cheeks were part of my life.
It seemed my course was progressing smoothly. My bone marrow was now 100% male, containing 100% of my brother's stem cells. And then one morning I woke up heaving, dizzy, unable to walk, unable to comprehend what had happened. To the hospital I went. MRIs, spinal taps, and chest X-rays followed. I was diagnosed with meningitis, Epstein-Barr virus, and chronic sinusitis. The dirty city had bitten me.
Throughout the course of my treatment and for the foreseeable future I must allow the doctors to biopsy my bone marrow to eliminate the possibility of relapse. A heavy-gauge needle is plunged into the rear of my hip so that both a sample of the liquid marrow and the solid bone can be extracted. Even after 8 biopsies it remains an uncomfortable feeling.
At an agonizingly slow pace I have been progressing towards a new, relatively normal life. One of the most excruciating parts of this process had been my inability to be in water, on water, or even near water. Finally, after having waited all summer for my immune system to recuperate, I returned to the shore where I had spent many a childhood vacation. Once I saw the water, I could not turn back. I had to let it touch my toes--if my toes, why not my legs. I settled for a risky dip up to my knees. As a child, I would have settled for nothing less than 8 hours under water. Indeed, a return to a relatively normal life.
Photographer and subject, boyfriend and girlfriend, Chris and I at our hiding spot within the sanctity of the halls of Jefferson.

Imprima English
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