And Then I Got Cancer

I got so many presents today. Mom and Dad came by with cute outfits and a tiara and lava lamp that David sent. Diane came by with a bag full of colorful yarn and a crochet hook and books. Lynn left a surprise beautiful set of paintings for my wall. With me in my hospital bed and everyone sitting around me I felt like I was holding court for just a minute. This morning I woke up with a warm red left arm. The danger of having a catheter in my vein is the possibility of developing deep vein thrombosis. So I went off to the ultrasound to check for clots. All was clear, so I started experimenting with my own workout regime to help get the blood flowing. Lots of leg swinging and squats and things. My blood levels are starting to drop off, so I could only handle a little of this. I guess my guts are also getting obliterated, because I can't seem to digest raw vegetables anymore. You should hear all the belching and farting going on in my room today. Actually, I take that back. I&

Wellllll...it could be better. It could be a whole lot better. My chromosomal tests came back with the dreaded monosomy 7. This means that, in the cancerous cells, chromosome 7 is missing its pair. I'm no geneticist. I don't even know if I spelled geneticist correctly. But I hear monosomy 7 type AML is very resistant to treatment. As in very difficult to get into remission. So what does that mean? I told you about those three risk groups (favorable, intermediate, and unfavorable). This places me squarely in the unfavorable group. There was a study done on ten people under the age of 60 who had this type of AML who underwent treatment. After four years, two of them were still alive. This study represents the most optimistic odds of survival. I guess with monosomy 7, age isn't really a helpful factor. What happens now? I'm going to go through this round of chemo as expected. Hopefully that will get me into remission. But regardless, I will be looking for a stem c

Faces are getting familiar around here pretty quickly. I see the same handful of people multiple times a day, every day. But here are the two dudes who are making all the decisions, pulling the strings, bringing the bad news, poking me with needles in places that should never get a taste of metal, and generally making my life a nightmare. And of course, they inspire confidence and gently guide me through this very complicated process. I couldn't decide between the subtle differences in the photos I took of Drs. Bowles and Patil. Either cool/pensive or unabashed good cheer. Which one do you like? They were in good spirits, though I get the sense they just gave me some bad news. The chromosomal tests on the bone marrow sample came back, and it turns out there is an abnormality in chromosome 7. I guess this is not favorable, and at this point a stem cell transplant will be in order at the end of chemo. The rest of the genetic testing is still in the works, and will t

Mom came to visit today. She brought a ukulele for me to hack away at, and some cards for my barren wall. We walked around the 5th floor of the hospital and scouted out all the cleanest bathrooms. I believe we settled on 5A-157 as the best bathroom option. She also showed me her next gig outfit. Isn't she cute?  In other news, my left hand and knees are starting to swell. They might be overdoing it a little with all the fluids they're giving me. How much can one girl pee anyway? Actually I looked it up. Well, I looked up normal bladder sizes and urine outputs. And as you would imagine, my typical urine output is pretty much off the charts. The top line in my pee hat is 800 mL, and I pretty regularly go to about 900 mL. I'm guessing of course, because there's no line there. I asked if they make a pee hat for big-bladdered girls who pee a lot, but I guess they're one size fits all. Alas, what are all the big-bladdered girls like me to do?

I'm less than a week into this thing, but this cancer bullshit is lame and boring. I'm ready to move on. I'd like to think I have much better things to do with my time. I got my second dose of Idarubicin at about 11. This is what Idarubicin looks like going in, kind of like strawberry jam. At 12, I had my first wave of nausea. But Amie's spotify playlist is helping with that. I heard somewhere once that reggae is the best music for calming down a baby. I'm wondering if the same might be true of chemo patients. I got a bad headache this morning taking a shower. This might have been precipitated by the logic puzzle obstacle course involved in actually getting into the shower. Heart monitor came off, dressings got wrapped up, and I was ready to go. Then I realized that when you put on a t-shirt, and then get hooked up to an IV that can't be disconnected for a week, it's sort of tricky to take the t-shirt off. How do you think I did it? And what do you t

Sorry, this one isn't about urine. It's about cerebrospinal fluid. I said before that the preliminary results from my lumbar puncture seemed to look good, meaning no blasts in there. Dr. Patil said the fluid was crystal clear, which is good news. But Drs. Patil and Bowles came by a bit ago to tell me further investigation was inconclusive. I guess the pathologist did see a small number of blasts in the sample. It's possible though that these blasts actually came from blood that was encountered as the needle was pulled out of the spinal column. The only way to know for sure of course is to do another lumbar puncture! Hooray! Sounds like this will happen Friday. And this next time they will draw out more fluid, using a few different vials. If there are more blasts in the first vial, or some in the first and none in the last, they can say more conclusively that my cerebrospinal fluid is clear. If they find that there are actually blasts in there, I will need Cytarabine

Went in for my baseline pulmonary function test just a bit ago. The tech's name was Zara, pronounced "Sara". I thought that was interesting. What was also interesting was the test itself. I had to breathe in and out through a mouthpiece as deep as I could. Then Zara took my lung capacity stats and compared them to the average/normal person of my gender and size. I think she said average was 3.9 L, and mine was 4.4 L. I'm basically a god.

I have lots of holes in me right now, even more than a normal girl. One of them is for a picc line (peripherally inserted central catheter). The catheter goes from a vein in my arm, up around my shoulder, right down to the superior vena cava where the drugs can be delivered very close to my heart. If I remember correctly, the reason they put these in is because the drugs are so caustic to the veins. If they are delivered in a peripheral vein there might be too much dwell time in one spot, causing damage to the vein. If they are delivered to the heart, the heart will pump them through quickly and make them more diffuse throughout the vascular system. Did I just make all that up? So I got this line put in my first day in the hospital, August 21st 2017, and a few hours later I started noticing I was getting slight palpitations now and then. The next day I had an echocardiogram, and the tech pointed out the tip of the catheter flapping around along with my heart valves. Apparently

Today I started induction chemotherapy. Induction as in induction of remission (correct me if I'm wrong). It's the 7 + 3 protocol, which is 7 days of continuous delivery of Cytarabine, and 3 days in a row of Idarubicin. The goal of the treatment is remission, and this cycle of chemo is the first phase of treatment for any type of AML. Nurse Cindy came in around 1pm today to start the chemo. Turns out nurses have to have a special certification to handle chemo drugs. They are so toxic, they have to don a gown and mask and wear gloves and mark these particular drug containers with special caution tape. In fact, I have to pee in a hat (don't worry, I'll share more about that later), and the drugs will be coming out in my urine. So even my pee is toxic now. They like to measure my output before they dump it out, and now that I'm on chemo only a chemo-certified nurse is allowed to dump out my pee hat. Now that I'm hooked up to this pump, it will be my cons

I have acute myeloid leukemia (AML). My doctor printed off some reading material for me to...read. It's a fun way to pass the time here. If you google AML you'll get all kinds of information, but since I don't have anything better to do, I'll give you the basics. AML is a cancer of the blood and bone marrow cells. Blood is made in the bone marrow, and with AML, the bone marrow cells start spitting out immature cells that can't really do the work of a regular blood cell. As the cancer spreads, you get more blasts, and they start to crowd out the normal blood cells. And then you don't have enough blood and start feeling tired and sick and weak. And then you die. AML spreads quickly apparently. If you don't treat it quickly and aggressively, death within months is a thing. Within the umbrella of AML, there are different genetic mutations that delineate sub-types. The specific mutation you have will tell you a lot about what kind of treatment you will get a

Well, I planned to use this domain for some cool, nerdy dev stuff, but "Sarah Develops...Leukemia" kind of works too. I decided to at least try to start a blog to let people know what's going on because I'd like to be in touch with everyone but I'm sure pretty soon I just won't have the energy to tell everyone everything separately. So, how did I get to be laying in a bed on the 5th floor of the Denver VA hospital? I got my first headache on July 15th, just over a month ago now. Brent and I and Pisco went on a long hike in Golden Gate Canyon State Park. All the wildflowers were out, and we saw a moose (my first Colorado moose sighting ever). It was a pretty ideal day. I drove home, parked the car, walked into the house, and was suddenly hit by a pounding stop-you-in-your-tracks kind of headache. I learned later that it was a thunderclap headache, and I started getting them every few days. Then they became more frequent. I took ibuprofen to keep the headac