Thursday, August 14. 2014
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!
Wednesday, August 6. 2014
Two weeks ago, I celebrated my six-month anniversary of my bone marrow transplant, which was “way back in January” already. The celebration wasn’t very different from an ordinary day: I drank a delicious cup of coffee, ate some things I can’t remember... I also celebrated by drinking a concoction of morphine and Versed (Midazolam). The combination of drugs made me feel very delightfully relaxed. The doctors wanted me relaxed so that they could drill through the bone in my lower back (”Ooh, your bone is really tough!” said one of them) while I laid on my stomach. It feels very odd but I can’t really say it hurts. They were extracting a core of my marrow to test it for cancer. Afterwards they gave me a juvenile pneumonia shot, which I don’t remember. Every day since then I’ve been reminded of the shot, for I still feel the soreness in my arm(s). Come back next week for the results of the bone marrow biopsy, they said.
All my medical records are online. When I got the robo-message that my results were in, I couldn’t resist taking a look at the results - beat the doctors to the punch! We don’t want to spend those extra days worrying! Actually resisting would have been quite easy, if Kerry hadn’t asked me about it: “Don’t you want to know?” I didn’t. If I’m going to get news, good or bad, wouldn’t I rather get it in person, from somebody who can answer questions so my mind doesn’t wander uselessly? Overall, that is how I think. So I caved to pressure, reading the doctorly gobbledygook and comprehending nothing. Nothing but the words “abnormalities.” Yikes, I thought, maybe something here isn’t quite right. I decided to say nothing to Kerry, so as not to disturb her with needless worry, and to wait until Friday. Later that same day, Kerry logged in to have a look for herself. She noticed the word “relapse,” which I somehow hadn’t, and knew what that meant. We decided to live it up that evening: after the coffee, we went to a burrito place (my burrito tasted awful) and then an ice cream place I usually enjoy, where my cone also tasted bad. We hoped we’d misunderstood the online medical records somehow, or that they’d made a clerical error and would be laughing, embarrassed about it when we saw them on Friday.
Nobody was laughing on Friday. Expecting bad news, I invited the whole clan to my cancer clinic visit: Kerry, Amber, my mom and dad. My doctor has been all smiles ever since I’ve known her - ever since January sometime, when we met, all the way up till the previous cancer clinic visit when I saw her. Ever since January, I’ve been getting mostly good news. Sometimes a little bad news, but mostly good. I’ve been clearly on an upward trajectory since the last time I went into remission and had my bone marrow transplant.
My doctor looked very serious. She is always pretty serious, but her seriousness was disturbing this time because this time she was not smiling. “What are we going to do?” she asked. She went on to explain a few things: the return of cancer is why my platelets are dropping again. She said I don’t have a lot of cancer, if you go by the numbers. She talked about getting me into a new clinical trial at the Mayo Clinic, three hours from where I’m currently living. She talked about the various options I have now: how the drug I used to get into remission before my bone marrow transplant (NexAVAR / sorafenib ) is no longer an option for me (I think it’s less effective, or ineffective the second time around). There are other clinical trials. There are other combinations of chemotherapy. Discussing the various treatment options, my doctor used the phrase “high mortality rate.” She also used the phrase “If we can get you into remission.” Hearing the word “if” from my not-smiling doctor was not uplifting. This was the same doctor who told me before my bone marrow transplant, that the two-year survival rate for people who go through that procedure -- ordeal would be another good word for it -- was 15%. I chose to ignore that number when I heard it, and assume it didn’t apply to me. It was only some weeks later, when I became more lucid and realized that statistic could apply to me, that I felt uncomfortable about those numbers for the first time. I’ve survived six months so far...
I used the phrase “upward trajectory” earlier because it suits the theme of space exploration, which is how I think of my leukemia treatment. Decades ago, I don’t know how many decades, AML would have just outright killed me, or maybe the doctors would have tried a bunch of crazy experimental things on me, before it killed me. In November of 2013, they tried a bunch of things and the doctors still thought I was going to die. Somehow, I didn’t. I likened my bone marrow transplant in January to the moon landing: how much knowledge had to exist, how many people had to work together, how many things had to go just right, for them to use toxic chemicals to kill my bone marrow, harvest stem cells from a perfect match donor (my brother Andrew, thank you!), and grow new stem cells in my body, all without killing me -- as I had no immune system, and then after some time went by, virtually no immune system. Wow! And the point of my personal moon landing, the Promethean Moment Concerning Dan Rasmussen, wasn’t to show off military might or to embarrass the Russians and other commies -- it was to save my life, to cure my blood cancer and enable me to live a longer life. So that I’d have more time to spend with friends and family and people who aren’t friends yet. To enable me to rectify my shameful progress thus far in saving the whales. As I’ve joked to friends who appreciate dark humor, “After all that effort the doctors went through, I guess I can’t kill myself now!”
Hearing that I again have cancer brings to mind, continuing the space theme, the explosion of the Challenger space shuttle, or the lifeless body of Dr. Frank Poole (from 2001: A Space Odyssey) drifting away from the Discovery One towards Saturn. I like the second metaphor better because it’s more hopeful. As fellow readers of Arthur C. Clarke’s 3001: The Final Odyssey know, in the distant future Frank’s body is recovered and they revive him. He’s reborn to experience all the change that has happened since his first death.
When I first learned I had leukemia back in November, I wasn’t very afraid. I’d been feeling crappy for months prior and was relieved somebody had a clue what was wrong with me and that they were to set about fixing it. I knew very little about leukemia and how serious it can be. I underwent an intense dose of chemotherapy and went into remission in December, only to relapse again sometime in December or early January. I wasn’t afraid this time either. I was still recovering from being drugged out of my mind, and don’t even really recall being aware of what was happening. I recall doctor visits and much talk of “blasts.”
This instance of finding out I have cancer is different from the others. Mentally, I’m about as close to “with it” as I ever am. I’m aware of the situation and of the risks. I feel nervous. Physically I’ve been feeling very near normal, with a few exceptions. Daily headaches, occasional backaches, every couple weeks I poop my pants, and weakness. I’m in better physical shape than “The Average American,” who doesn’t run or bicycle, but pretty weak compared to what I’m used to. Yesterday I was riding my bicycle around town and crapped out trying to go up “rathole hill,” a hill which is challenging but doable when I was in top form. As I walked uphill, I struggled to breathe. My stomach felt tight, and I wondered if I was suffering from anxiety (a familiar feeling from my 20s) or if it was some ominous cancer-related thing going on. Today I felt more winded, just from walking, and suspect it’s because of low platelets.
Tomorrow I’ll head to Iowa City to learn more about my treatment options. I’ll probably spend an extra couple hours getting an infusion of platelets. When people ask what they can do to help me, I can’t often think of much. I always forget to say “donate platelets” or “donate blood,” but those are things you can do to help. I’ve gone through bags and bags and bags of both blood and platelets.
I’m not losing sleep over anxiety* or letting it ruin my day, and I hope you’re not either.
* I’m losing sleep over writing this. Feels like it took all day!
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