And Then I Got Cancer

I miss laughing. I've had a pain in my diaphragm or ribs, I don't know which, for weeks that gives me trouble every time I laugh, yawn, cough, cry, or vomit. This pain wasn't the only reason I haven't written in so long, but I think it was a contributor. To catch you up on what has happened since my last post: I went home from the hospital feeling weak for some number of days, then started having this pain that sent me back to the ED (no one in the know calls it the ER anymore, it's the "Emergency Department"). It seemed for a while that the pain was related to my gallbladder or lung, and I stayed in the hospital for maybe another week waiting to find out what was wrong with me. Someone had done the math and figured out that I had already spent just about 100 days in the hospital since my diagnosis. I'd like to think it was exactly on day 100 that I couldn't take it anymore. On day 100 or thereabouts I woke up watching the clock and telling all

I think I get to go home today. I say I "think" because most of the medical teams have thought I'd be able to. I don't have the final word yet, though                                                                                                                                . I'm quite a bit weaker this time than the time I was discharged. It's taking me a whole lot longer to write this post, because I keep making spelling and grammar errors, and going back and correcting them. I don't know if that's a function of my brain or my small motor skills, but either way it's a pain in the butt. On the up-side, my iPhone recognizes my thumb print again. I don't know how chemo screwed that up. Alison pointed me in a direction of an article about this very thing. I guess it happens to other people. But to me there was nothing different looking or feeling about my finger tips. Weird. I should put this on the list of things to ask the doctors before I

I haven't written much lately, I know. I've mostly been in pain or tired. This round of chemo has taken much more of a toll on me, and the things I used take for granted before have become major points of consternation. Some time around my last post I asked Brent to bring a ball to kick around at the park. It was a really windy day, which I didn't realize till I got outside, and we had a hard time getting that ball back and forth to each other even in a small area. I felt good that day, though. I felt like I was getting exercise and staying strong and so forth. It was one of those perfect fall cancer days. I can't quite remember when the shift happened. The teams of doctors round on me every morning when I'm still half asleep. Mostly they talk about my fevers and the status of my various infections and how well or if my cells counts are improving. But at some point the Nephrologists got pulled into the mix. I felt awful and weak all the time. Sometimes I had to a

Figure 1. The last time I wore a suit My Sister said she wasn’t updating her blog because there was nothing funny to write about, so I offered to fill in for her. I am not nearly as good a writer so please forgive me, I just thought it would be worth giving her many fans an update. Imagine that your body is expanding like a balloon and the hurt is coming from so many different places at once there is no non-hurt to compare it to - hurt is the state of the world, without boundaries. Imagine that nausea has been going on for so long there is no longer a concept of non-nausea. Imagine a grey sea of pinging bells, poking needles, concerned whispering visitors, cautiously optimistic news every day until cautious optimism is indistinguishable from the relentless pain and nausea.   Not every single moment is like this of course - just most of the moments.   Sarah’s white blood cell count is coming back up again after hovering at 0 for a couple weeks, when she’s up to

I haven't written in a while. I've been feeling pretty terrible. A few things happened at about the same time that left me mostly confined to my bed. My hemorrhoid came back, and then it clotted. It was excruciating, and I started taking Percocet. I stopped getting out of bed except to use the bathroom because it was too painful to walk. Maybe that's why I didn't notice that I had a new infection in my blood. Some sort of resistant klebsiella bacteria. The infectious disease team seemed kind of excited that they had to order in the antibiotics from somewhere else because it had only been approved this year and they hadn't had a chance to use it yet. I would tell you the name but it's really long and I can't pronounce or even spell it. Then they got really excited when they said that if this bacteria mutates again, they'll have to use an antibiotic that was only approved two weeks ago and hasn't yet been used in the state of Colorado, or probably at

I know some people dread blood draws, but I have never had a problem with needles. But things have changed. Every day that I'm in the hospital, I have someone taking blood from my arm at least once a day. With a central line, it's not a problem at all. But once I get a blood infection, that central line comes out. And getting blood out of my arms becomes a problem. Maybe because my blood volume is lower my veins are smaller. Maybe because I've been stuck so many times my veins are scarred and it's harder to get into them. Maybe with all the drugs going through my veins they are more irritable. But whatever it is, my body doesn't like letting go of blood, and getting that sample every day is a challenge. I have one peripheral line in now, and everyone (including me) prefers that blood is drawn from there so I don't have to get stuck. Yesterday Matt from the IV team came in and worked his magic, using a heat pack, massaging the entry point, pulling on the line to

I first came to this hospital on August 21st, the day of the eclipse. I thought it was just my luck that I had to get cancer and be admitted to the hospital during the most exciting celestial event visible to the (well protected) naked eye of my adult life. But Mom and Brent and I at least managed to get out to the parking lot for a few minutes to enjoy the goings on. We didn't have eclipse glasses, but a woman offered to share hers with us. Her name was Elizabeth, and she was a psychologist at the hospital. She and Mom got to talking, and told her about her service dog, Waffle, who would do the rounds with patients. I met Waffle later that day. Elizabeth brought her to my room as I was getting settled in. She was a Lab / Golden Retriever mix. She sat at my feet and let me pet her, and reminded me that I wouldn't get to see my own dog for quite a while. They left me with a card that had Waffle's service portrait on the front and a short bio on the back. It reads "Wa

Seeing as how it's Halloween, I feel obliged to tell you all the scary things that happened in the past 24 hours or so. Yesterday morning, I heard a commotion down the hall, followed by a horde of what seemed to be zombies wandering through the halls. They weren't actually zombies of course. It was a bunch of people with bleach wipes bleaching down the whole unit. Sort of. I don't know what kind of training they got, but they seemed to be bleaching sort of random things. Random sections of walls, the arm rests of one chair but not another. One guy who came through my room did have a lot of trouble walking, so he really did remind me of a zombie. I wonder how he got stuck with this job. Apparently, the nursing staff have been complaining for a while about the poor housekeeping, and a number of people (including me) have gotten c. diff while staying here. I tested positive again a few days ago after having diarrhea every time I sat down over a hole. I'm back on vancomy

I was wrong about the Filgrastim. I thought, and I think the Medicine team thought, that I was getting Filgrastim to prevent me from becoming too neutropenic. But the intention was really the opposite. The chemo kills cells when they're dividing. Filgrastim makes cells divide faster, increasing the odds that the chemo will work on them. So hopefully more of the leukemia cells will die off. But more of the Sarah cells will also die off. The strategy seems to be working, because my WBC is dropping fast. I came in with a WBC of about 4, which is normal. After one shot of Filgrastim, it jumped up to 19. Yesterday, after four days of chemo, it was down to 1.6. And today I'm at 0.1. I started feeling pretty crappy early on this round. By Wednesday evening I had no appetite. Mom and Dad and David went out to dinner and brought me back some soup and pie. I could tell it was good, but I could only take a few bites. Yesterday I didn't feel like going on my usual morning walk. I

It almost feels like I never left. After a week at UC Health, and a glorious ten days at home, I'm back at the VA for take three of chemo. I'm at the point where I feel almost recovered from the last two rounds. I can walk at a fairly normal pace, I can climb stairs without feeling (abnormally) out of breath, and my guts aren't constantly in a twist. I even had a beer with coworkers on Friday. It was really nice to see everyone, and I was pretty much my old self. So it seems a shame to put more poison in my body and fall back into the sick zone. I know in about a week I'll be feeling pretty shitty, so I don't know what kind of Halloween costume I'll be able to pull off. Any suggestions? This round of chemo is called GCLAM: three days of Mitoxantrone, and five days of Cytarabine and Cladribine. I also get shots of Filgrastim to stimulate my bone marrow to produce more white blood cells. Hopefully this will help lessen the blow of the other drugs, my cell count

I normally ignore calls from numbers I don't recognize. But the other day I got a call from a number with a Seattle area code. I'm glad I picked up, because it was the coordinator from the bone marrow transplant center there. My doctors here had just requested an urgent search for a stem cell donor for me, and the coordinator, Lisa, was calling with information about the donor search. Everyone keeps asking me what the donor search process is like. And every time I get a question from someone, I wish I knew more about it. Like why does it take so long? I mean, if there is a database out there with a bunch of donors, and there's a search algorithm, you should just be able to plug in your information and know instantly if there's a match, right? Well kind of, yeah. Lisa told me she could plug in my HLA information to the system and know right away how many matches I had in the registry. I asked her how long the whole process of finding a donor takes. She said if you h

When I left the hospital a week ago, I left under the impression that I was in remission. The folks at University hospital didn't see any trace of leukemia in my fourth bone marrow biopsy. And they said that made sense; FLAG-IDA can take a little longer to show its effects. So I went to my parents' house for a few days, got some home cooking, hung out with Pisco, and enjoyed long stretches of sleep and not being connected to an IV pole. On Saturday I went home home, to the house I bought last year. At that point I was ready to enjoy making breakfast for myself and Brent, taking Pisco for walks, and even doing some housework. I could tell I had been languishing in the hospital when vacuuming made me sore. I also have a really hard time opening any kind of bottle or jar. Good thing I have my man hands within shouting distance at all times. I've had a number of appointments back at the VA since I left. I had to finish a round of IV antibiotics, and I went back again today

Out of the hospital, that is. That's one of the ways being in the hospital is like being in the military. Things are either happening very fast or very slow. There doesn't seem to be anything in between. I had stopped paying attention to my cell counts when I went a couple days without needing a transfusion. Also when I had a longer list of things that annoyed me at University hospital. But every day Dr. Smith, the attending on the bone marrow transplant team, came to see me, he would tell me I looked "too healthy to have leukemia." He was the first to express doubt about my biopsy results that sent me to the University in the first place. So when he came in to tell me the latest results were showing that I was actually in remission, he followed that up with asking if I wanted to go home. Heck yeah I wanted to go home. Not be woken up at 2am? And again at 4am? Not have to call someone to ask for a gown so I can cover myself before going for a walk? Not be constan

I'm in remission. I think. They think. I think I mentioned that the doctors here at University hospital repeated the last bone marrow biopsy I got, the 14 day biopsy after the FLAG-IDA chemo. I think that was last Wednesday. Most of the results are in from that biopsy, and it shows no signs of leukemia cells. Which is puzzling, since the biopsy I had less than a week before showed I was still at 10 percent. Apparently, especially with FLAG-IDA, the chemo can have a kind of delayed effect. So even though the chemo had done its work and was out of my system, the leukemia cells took a while to actually die off. This is great news. But, I don't want to get too excited yet. The next thing that happens is ANOTHER BONE MARROW BIOPSY. They want to do it tomorrow. This would count as the 28-day biopsy. They also called it something like a recovery biopsy. It's the one they do when cell counts have recovered and you can look at the bone marrow to see what's growing back. If

I know I'm recovering because my cell counts are going up. But I can tell I'm recovering because I'm getting restless. Being in the hospital got really old all of a sudden. And being at the University hospital got old even faster than being at the VA. Everyone here seems to think the VA is more regimented, or more military-esque? But when I was there I could take long walks outside around the park, or go over to Rose to get a chai. I had so much stuff in my room, I would spend close to an hour every morning just rearranging it all. I was running out of room on the walls to hang cards and decorations. At the new place, it took a while before they were willing to disconnect me from my IV pole. I have to put on a gown before I leave my room for a walk (which makes sense, what with the c. diff). I can't bring all that stuff into my new room because it's probably contaminated now (with c. diff spores). There's a very small area where I can walk outside. Overall, t

The good news is I don't have to worry about having a stem cell donor for a while. The bad news is I don't have to worry about having a stem cell donor because I'm not in remission. Dr. Bowles broke the news yesterday that I am still at 10 percent leukemia cells. So the second round of chemo, the FLAG-IDA protocol, did nothing for me. In the next breath he told me that I would be transferred to the University of Colorado hospital so I can participate in a clinical trial. The goal is still remission, followed by a stem cell transplant. I was surprised. I was really sure, because the first round had worked so well, the second would surely knock out the last of the bad guys. But I was also sure one of my brothers would be a match for me. And I was also sure that I didn't have leukemia to begin with. Over the next few hours, my parents came down to the hospital and packed up my entire room, which was no small task. All my clothes, bedding, electronics, coloring books,

I got some discouraging news Friday. The HLA (human leukocyte antigen) testing showed that neither of my brothers is a match for me for stem cell donation. If you want to read more about HLA matching, you can look on the Be The Match website. This is the worst news since my chromosomal testing put me in the highest risk group of AML, the group with the lowest rates of survival. I need a stem cell transplant to have a fighting chance, and these transplants are more successful when the donor is related. But whatever. Now I know my brothers won't work as donors, I'm like a free agent. I get to go shopping around in some database for a donor who best suits my immunological needs. Well, my doctors get to do that. I hope there's someone out there for me. Or maybe some donated cord blood for me. I'm told the likelihood of finding a match depends a lot on ethnicity. Apparently white people like me have the easiest time finding a donor because there are so many white regis

When I enlisted in the Navy, one of the things that surprised me was the slightly different usage of certain words. For instance, "hygiene" is used as a verb. When I started chemo, I started hearing "fever" used as a verb all the time. The doctors told me "Everyone fevers when they're neutropenic." It still sounds weird to me. Maybe if I start putting it in writing I'll get used to it enough to be able to use it in conversation. So, last Thursday as I was getting ready for my bone marrow biopsy, I was starting to fever . It happens all the time so I didn't think much of it at first. But the day wore on and my temperature kept climbing. Sometime in the evening the doctors decided I had been fevering long enough and decided to run the standard tests: blood cultures, urine sample, chest X-ray. Before the tests came back they started me on another broad spectrum antibiotic. But even on that, I continued to fever . My temperature eventually cli

Today was bone marrow biopsy day. It's day 14 of the second round of chemo, so now's the time to check whether the chemo had the desired effect. The first round of chemo brought me down from 43 percent to I think 10 percent leukemia cells. I don't think I ever mentioned that FISH test that came back, because I was already on to the second round of chemo. For some reason I thought I might not have had as much pain this time around. I guess there's nothing wrong with wishful thinking. But, it seems like these biopsies are getting more painful every time. Maybe my bone is still bruised and they keep hitting the same bruised spot. I think I made up for the pain by getting pictures of the goods. Here's my bone marrow sample. It's a core of my pelvis. It looks like a maggot to me. And here is the stuff they suck out from the inside of my bone (also bone marrow, but looks more like blood.  They had a harder time getting a good sample this go round. I could f

The VA hospital is a federal facility. When I arrived here, they told me under no circumstances could I have cannabis products in the hospital. Which I guess is too bad, because medicinal marijuana is so famous for treating the side effects of chemotherapy. Getting chemotherapy seems like the best time to see for myself if all the hype is true. These past few days have been difficult. I'm in my second nadir, so hobbies include moving very slowly, staring off into space, and getting stomachaches. I know nausea and vomiting are more common chemo side effects, and I've had very little of that. But plain old stomach pain seems to be my side effect of choice. So the other night I had this dream where I was laying in bed with terrible stomach pain. And as I was there writhing around and sweating into my sheets, this little elf squeezes himself under my door, jumps up on my bed, and drops a CBD chew in my mouth. That was the end of the dream. Pretty mundane, really. But when I wo

I have been more irritable than usual these past few days, so I've been compiling a list in my head of all the minor irritations that have gotten under my skin. I'd like to share this list with you now. I hate when I'm trying to get a wipe out of the package of wipes, and I can't get just the one I need. A second one always wants to sneak out, or get all bunched up in the package. I hate when my slippers get pushed under the bed far enough that I can't reach them. I hate when someone knocks on my door and waits for me to tell them to come in. They can never hear me the first time, so I end up having to shout, "COME IN ALREADY WHY DON'T YOU?" I don't actually say this, but that's what's going through my mind. I hate when my nurse doesn't wait long enough for the alcohol to dry before giving me a shot in the belly. I hate when I moisturize and the very next day my skin is peeling off again. I hate when the drawer in my bedside table ge

Dad came with another batch of lemon kale yesterday. It's pretty amazing how much kale it takes to make a single serving of kale on a plate. I ate up all that kale and was ready for more, but now my parents have to go collect a heaping load of kale, get the chunky stems out, and cook it all down till it fits in a neat little container. It's not just kale. I've been hungry for everything in general. A couple days ago I must have polished off about a pound of leftover nachos. After eating the lunch provided by the hospital. It's good to have an appetite, and pretty miraculous under the circumstances, but it's hard to keep up with. So far today I've had peanut butter oatmeal, greek yogurt with homemade granola, two slices of bacon, a strawberry protein shake, two tea-flavored Kit-Kats, dover sole, rice, asparagus, and a banana with almond butter. And dinner is still a ways off. I've lost about ten pounds so far in the hospital, and I know I can't attribu

Yep, I'm a bald person now. Brent brought his clippers yesterday and very carefully sheared my head. He's got skills in many areas. I'm lucky to have him in my hour of need. Or rather, year? Hopefully just a year? Gotta go fight aliens now Seriously, I don't think becoming bald was a huge shift, and not even the most interesting thing to happen these past couple days. For one thing, Chris brought me something I have never had. Home made granola. I don't know why I haven't been making my own granola my entire life now, it's so much better than what I would ever find in a store. The oats were soft and supple, there were perfect proportions of raisins and nuts and coconut shavings. It was the perfect topping for the yogurt David brought me while he was here. Especially when the breakfast I got this morning was a heaping spoonful of stinky scrambled eggs. When Chris was over, he and Brent and I took a field trip across the street to Rose Medical Center w