Speed bumps and false summits

Hey, guys! I thought I would give you an update on how the summer  has been going. In my previous post, the timeline for a BMT  was late June. But surprise! That didn't happen. What did happen was two months of fun and games that I know some of you have been wondering about. So here's the summer '18 recap!

• How about some leukemia to top off your tMDS diagnosis? Over the last 12 months I have developed a genetic mutation in my bone marrow, probably due to all the chemotherapy I recieved in '10 and '11. This causes me to become anemic and if untreated would eventually kill me by preventing my marrow from producing blood products - RBCs, WBCs, platelets. Hence the need for the bone marrow transplant. So, we get the BMT scheduled for late June, and in mid-june I go to CBCI to get checked out. But surprise! Sometimes tMDS morphs into AML (Acute Myeloid Leukemia). This is anotherr blood disease caused by problems with your bone marrow. This can also kill you. So - great. Now I have two things trying to kill me. Ugh.
• Once we discover this, my care team tells me that we need to knock down the leukemia before we can do the BMT. "Great!", I  say, What does that entail? Oh, just a 30 day stay in the hospital. And the first 7 days you're looked up an infusion poll EVERY SINGLE FUCKING SECOND OF THE DAY. So - rather than going in for a bone marrow transplant in late June, I have to go to chemo  summer school and do a  30 day session. IN THE  HOSPITAL. EATING HOSPITAL FOOD. WHICH SUCKS. 
• OK, to be a bit more fair. Foothills Hospital in Boulder is just awesome. New facility, great staff, great resources. And the food is a solid B-. It's  definitely not a C. But after several days, it just starts to wear you down. Everything is just kind of mediocre, unoffensive and it but it was definitely a drag and you  realize that they could make it better by simply spending more money on the food and preparation. But in this climate of ultimate cost control in the health care industry, that's a tough sell.
• What to bring when you're in the hospital for 25-30  days? I knew up front that for much of the time, I would actually feel OK. So for me, the biggest challenges were boredom and also a strong desire to support my work colleagues as much as I could. Here are the tools I  used to create my own mini VRBO/consulting gig at the  hospital:
• Chromecast ultra device, talking to my hospital TV and my laptop over a private LAN I setup. Important for streaming World Cup games (and other things like Netflix). The hospital staff were super nice in helping me set this  up and it was great to be able to watch World Cup games over fubo.tv and stream our favorite shows on the room TV
• Road bike and resistance trainer. Because it's Boulder, the culture is very supportive of staying active while receiving care. I setup my road bike and my bike trainer in the room and would try to spin for 30 minutes/day. I used Zwift and Strava to  post my results online. Zwift is a fun virtual cycling community and Strava is where I  post all my workouts. I'm very anemic (hemoglobin hovering around 6.5) so I'm not putting much power into the  pedals. But it was emotionally a great lift to get on the  bike and push myself a bit and I did elevate my heartrate a bit on  these rides (usually < 155 bpm), so I was getting a bit  of  a workout.
• guitars. Because of course, music therapy is awesome!
• here are a few pics from the VRBO/jail cell:
• Susan playing guitar while I do a Zwift workout on my bike:

• guitar, workstation, bike setup:



• missed our 3rd family member Athena, so a quick skype session with her and Susan:

• low points of a 30 day leukemia induction
• You're in jail. In my case, it was a very nice, 5 start VRBO kind of jail, but it still's jail.  I got outside every day and tried to get in between 1-2 miles of walking. That was a huge win for me. Not everybody getting this treatment is healthy enough to do  this but for me, it  was great. The hospital staff was great in their  support of me being active. When I was on  the pole,  I would do 21 laps/mile inside and get outside a bit to have meals on a nice patio. Once I was off the pole,  I would do laps inside and outside of  the hospital. Huge plus for me.
• Neutropenic fevers. When your white blood cell counts go low,  it's very common to get fevers. In my case, they were pretty intense. > 103 fever all night is not a recipe for a good night's sleep! And as an added bonus, try slamming an ice bag on your femoral artery (aka groin) at 2 am in the morning. Gets your fever down, but not much fun.
• low platelets causing leaks. I had a 14 hour nose bleed due to some irritation I had in my nose and a low platelet count preventing good clotting in my nose. We tried clamps, ice, (multiple) tampons up my nose. It started out slow but just got worse and worse through the day. By the evening, I was getting two units of blood (more on that later!) and the blood was flowing out of my nose at about the same speed as it was coming into my arm. Eventually I got a  bag of platelets and the bleeding finally stopped. This was the only time in this 30 day run where I started thinking "OK, I'm ready to be done with this." I'll be happy if I never have that experience again!
• I literally shit myself. Yes, this was disgusting. In my defence, you try having a messed up GI tract and a night of hallucinating with a 103 fever and see how you do. I woke up one Saturday morning and thought "what the fucking hell happened in  here last night? This room smells like death". And then I realized - great, I really am two years old and have shit myself in my sleep. I got up, changed all the  sheets and moved on. But - ugh. 
• Privacy? Nope. You are a science experiment. These are common questions that you will be asked multiple times/day:
• Have you taken a shit? What consistency? What color? How many times?
• Have you peed? How much, how freqeuently?
• Let me take your vitals. AGAIN and AGAIN and AGAIN. Every 4-6 hours for 30 FUCKING DAYS. Yes,  it's necessary and yes, all  the staff was awesome and would be flexible in their timing if I was on the bike or walking (love you, 1 North team!) But it's still a super invasion of your privacy. Of which you have none.
• Hurry up and wait. This therapy strips alot of cells out of your bone marrow, with the hope  that when they come back, the good cells will be much more plentiful than the bad cells. There are some general guidelines for how much recovery (as measured by blood counts) you need to  have before being discharged. So for several days, you anxiously await your blood count results to get an idea for when you can break out of jail. For me, that was day 30. That's A LONG FUCKING TIME TO BE IN THE HOSPITAL.
• Ok, so after the leukemia induction, we're FINALLY ready to rev up the bone marrow transplant. I go back to CBCI, where I again go through a battery of  tests:
• blood work
• pulmonary function test (I always do great this so I enjoy taking them). I mean, who else can do 100% O2 sat on room air at 5400 feet with only 40% of normal red blood cell count. That would be me, bitch! So, serious humble brag on this one.
• bone marrow biopsy. kind of like having a cork screw drilled into your pelvis. Some people really hate this but I've had quite a few and have gotten  used to them. Not a big d eal.
• echo cardiogram. Go in a dark room and have a (typically 30 something woman), rub goo on your chest and rub a sonic transducer on you while taking pictures of your cardiac function.  Yes, it's just as weird as it sounds. Again, I do well on this test so it doesn't cause me any anxiety,  but it's just another irritating thing you have to go through to get your all event pass to the big BMT dance!
• psych/social eval? More fun  questions:
• Do you have anxiety? no, I'm perfectly happy undergoing a procedure that may cure me, not cure me, or sort of cure me but give me live long, serious new problems. OF COURSE I HAVE ANXIETY, YOU IDIOT! But it's not cool to get all jinky on these guys. So I take a big breath  and try to gently describe my coping strategies, my zen like calm in the face of this serious illness. But again, it's some work to get through this.
• So after a few days of tests, we sit down with the  oncologist. And here's where I learn another lesson - you never want to  hear your oncologist say "speed bump" related to your treatment plan. Good news - my bone marrow looks quite clean after the 30 days hosing down we gave it. Bad news - one of those red blood cell transfusions caused me to develop an antibody to a particular protein structure on some red blood cells. And this means that my donor  (son Kyle) cannot give me his stem cells. So we have to find another donor from the donor database. And my great care team has already done this and have found a good match. My reactions too all of this:
• Yeah! you guys are great. Thx for having a solution to this new problem.
• WTF? You gave me the blood products that fucked up our plan. Aren't you guys supposed to be good at this? Why the heck are you giving me blood products that could cause this problem? Isn't this why we qualify blood products? Argh. 
• So now we have a harrowing few days trying to track down the donor and getting a final head nod. Because, you know, if he  says no, I'm KIND OF FUCKED. But yeah - he says yes!
• So we're back on the happy path to a  BMT and living happily ever after! But - and my summer has been full of buts - my care team is worried that too much time  will have passed between the leukemia induction completion and the BMT. So - surprise! Let's do more chemo.
• This session is  a six day session - one day getting chemo, one day off, repeat 3x. The normal protocol is to into the hospital for six days. To which I politely replied "NOOOOO!" So, working with my great care team,  we've figured out a way for me to do this as a pseudo out patient, so I can sleep at home and not be trapped in the hospital between actual infusions.

So here we are! New BMT date is  11-sept (auspicous, eh?) I finish my latest chemo today (9-aug-2018), recover for a few weeks and hopefully climb into the ring for a very successful allogeneic stem cell transplant. Fingers and toes crossed!