One week after the six-month anniversary of my bone marrow transplant, I learned that I'd relapsed and now have leukemia again. Very disheartening, of course. I tried to carry on as normal with everything. Friday, the 8th of August, I rode my bike five miles or so, stopping to run errands or take breaks in between. I enjoyed it even though biking was exhausting: I felt tired even before I got on the bike! Feeling the wind and sun on my face was something I yearned for during my ten-week hospital stay this last winter.
On Monday, the 11th of August, carrying on as normal became very difficult. I awoke with a terrible back ache. Did I do something to it in my sleep? Injure myself picking up that canoe on Saturday? I was having chills and feeling crabby. Once we got done having my blood drawn at the local hospital, and lunching at the local coffee house, I went home and got horizontal -- this seemed like the best way of dealing with the pain. It was a good way of dealing with the pain -- as long as I didn't move. It hurt to inhale fully. I'd get a headache whenever I tried to sit up or stand up. When I'd go back to lying down, pain would course through my back, shoulders, neck and head for a couple minutes, until I settled down. I called my doctors, as I always do when I have weird issues (I have weird issues fairly regularly). They told me I couldn't take Tylenol because that masks fevers. Hours later, I smartened up (i.e. Kerry overcame my usual stubborn take-no-pills approach) and asked if I could take Hydrocodone. Fortunately they said yes. My pain diminished but did not go away fully. "Oh, and can you come to [cancer] clinic on Tuesday instead of Wednesday?" Occurrences such as this are why neither Kerry nor I can get a normal job, even though both of us would like one for various reasons. "I can do Tuesday," I told her. Kerry and I canceled our Tuesday appointments and prepared to leave town early the next morning.
I was nervous, because it's never a good sign when the doctors want to see you early. Is something serious happening? I have flashbacks of television scenes involving defibrillators. At the same time I was excited to see my doctors, so they could find the source of my excruciating (not a term I use lightly) pain, and hopefully do something about it.
At the clinic visits, they draw my blood for testing, weigh me, take my temperature, and measure my blood pressure and oxygen level. This week my weight was down a few pounds, because my appetite was down a lot. My blood pressure was high for some reason, and my oxygen level was low. My PA ("Physician's Assistant") walked me around the hallway with my oxygen monitor on. "Odd," she said when we were done, "I've never seen anybody's oxygen level go up from walking around. It always goes down!" I interpreted this as proof my body's made for walking.
This week they told me my white blood cells had shot up -- bad news. They were concerned about my fever and the pain. We want to admit you to the hospital so we can monitor you more closely, they said. So it happened -- almost exactly six months after I was released from the hospital after my bone marrow transplant, I was going to be kept overnight again.
My readmission began with a visit to the infusion clinic for an infusion of antibiotics, then with a long wait (well over an hour) for a room to be ready for me.
The doctor who spoke with Kerry and I in my new room was full of bad news. She informed us that because my white blood cell count had jumped so drastically, they were going to hit me with high-dose chemotherapy the next day, on Wednesday, along with a drug called Sorafenib which I'd used to get into remission before. "The chances you'll achieve complete remission are low," she told us. There's no way of telling if any combination of chemo drugs will be effective. We can't count on anything working just because it worked before, she said. I felt glum. My early death and all the unpleasant events that could lead up to it flashed through my mind.
Wednesday came upon us and we (Kerry was there, as were my parents) got some surprise news. My Wednesday labs (blood now drawn daily, as I'm a person of interest) revealed that my white blood cell count had dropped -- nearly in half! We'll hold off on all that chemotherapy for now, the doctor told us. We'll just continue to monitor you closely.
This was about the best news we could have gotten. Our current treatment plan involves getting me into a clinical trial at the Mayo Clinic in Rochester, Minnesota. They're trying out some very promising drugs that target the aggressive form of leukemia I have. Getting into this trial requires me to "be eligible." Among the requirements, they won't accept anybody who's had leukemia-targeting chemotherapy within a certain amount of time before the trial starts. If my cancer cells multiply too fast, they'll have to hit me hard with chemotherapy so I don't die -- but this would make me ineligible to start this particular trial. The trial was initially scheduled to start "the second week of August" but was then pushed back to September 1st. Hopefully there will be no more setbacks or excitement.
I'm not enjoying being in the hospital again. I'm having all the problems I had the first time: difficulty sleeping, difficulty eating, mouth always painfully dry because the room is dry, being pestered with questions about my bodily sensations all day long, constant interruptions, and being attached to a pole full of IV fluids that never stops beeping. Complaints aside: my doctors, nurses, and everybody else here are great. If something's wrong with you, the University of Iowa Hospitals and Clinics is a great place to be.
One of the doctors actually used the word "hostage" to refer to me - and that's what I'll be until my fever, pain, and white blood cell count are under control. Let's hope that happens soon!
