9/10/20: Health update, 4th year anniversary, deep dive on dex

 On Tuesday, I started my 5th week since discovering the relapse. Thankfully, things have been positively stable for me. It’s been great. I’ve maintained a tremendous appetite, consistent level of physical activity, good overall energy and really good mood. I’ve been able to hike on real mountain trails with Alpen. Eat massive quantities of food and not feel sick, work in the yard (installed a drip system to the upper back yard to prevent more plants from dying), and learn a new board game with my bro: Gloomhaven.  The downsides have been cramps of all muscles in the hands and legs and not being able to blow my nose in danger of starting a nose bleed. I also can’t sleep sometimes when I want to, but I find just resting with my eyes closed to be a close 2nd to sleep at the moment

This post will be more medically inclined to catch everyone up on this omnipresent aspect of my life,  but I hope to follow it up with a post about some of my recent adventures around Seattle and some more description of my volunteer trip to Peru in 2006.

I’m sure the tumor cells are advancing, but it seems like they are advancing slowly. The steroids seem to be suppressing the tumor cells fairly well. However, my body is still dependent on transfusions of platelets and red cells. Even though my body isn’t making enough platelets, it’s a least doing a remarkable job accepting and holding on to them. Having low platelets (5-15)  isn’t the end of the world either. It just means I’m at higher risk of losing a lot of blood if I have any bleeding events. People with platelet disorders go through their entire lives below 20. When I was first diagnosed, I’d been living with platelets under 10 for weeks. When I checked into Northwest hospital back in 2012, I had a platelet count of 6.

Thus my routine for the last 3 weeks has been to go to the SCCA for two bags of platelets on Mondays and Wednesdays mornings and then getting pumped up enough to be able to skip Friday.  On Mondays, my platelets have been in the range of 9-15.  After two bags, I’ve been jumping in the low 30s or so. My body has been accepting these platelets better than any other time in recent history. Before the transplant, it took 2 bags just to hope for a bump of 10.  Now, I’ve been averaging a jump of ~12 a bag. But I average a loss of around 6-12 a day, so by Wednesday they are the 20s somewhere. With two bags on Wednesday (especially if one is a big one) I bump high enough to get into the upper 40s. This is all confirmed by post-platelet counts after infusions. I did not expect these numbers. I don’t think anyone thought I would be responding so well to platelet infusions and especially consistently to this point.. Once I have there is no reason to show-up for Friday because SCCA won’t infuse me if I’m above 30. That means if I’m in the 30s on Friday, I might as well stay home.  And if they are in the 30s on Friday, and they stick to my average loss patterns , I should still be in decent shape by Monday. So no reason for blood work over the weekend either. Being able to go 4 days in between clinic visits with weekends free has made my life feel so much more normal and given me more time with family and friends. It’s been great

For clarity on my cortical steroid intake: I’ve been taking 8mg/daily of dexamethasone this whole time. I was calling it prednisone in early posts because of how related they are and an assumption of reader’s familiarity with prednisone and not wanting to get into the explanation. But I'll be referencing “dex” a lot more going forward, so it is time to come clean. Dexamethasone (aka the “dex”)  is a slightly stronger version of prednisone. It has a longer half-life (5 hours instead of 3) and is more medically powerful than prednisone. Dex can cross over the blood-brain barrier to kill disease in the CNS. The two work similarly by suppressing the immune system and attacking cancerous cells. Being a useful anti-tumor drug of its own, I had a course of high-dose dex (20mg/ay) during consolidation in the beginning. It was terrible. I hated my week of high-dose dex. I remember an awful combination of sleeplessness, ER-level back cramps, taking opioids for the pain that led to nausea and vomiting, uncontrollable need to clean and organize, and a general feeling of brain scatter.

As a side note, and one I’ve shared before, I’ll share my first time encountering the use of dex. Dex plays the protagonist in the mountain climbing flick  “Vertical Limit.”  A Hollywoodized version of climbing K2, the world’s 2nd tallest mountain. The film stars Chris O’Donnel and Bill Praxton and yep, shit hits the fan and everyone starts succumbing to High-Altitude Pulmonary Edema (HAPE). The movie becomes a race for the few doses of potentially life-saving dex that the expedition packed. The dex is so desirable because it relaxes HAPE symptoms and allows a few more hours, (days?) in which to get off the mountain. Funny story, I did a little side research and the normal dose to take high-altitude climbing is 8mg.  This is the same amount I take on the daily here in Seattle. It’s comforting knowing I can firmly strike off HAPE on my list of worries. Back to the flim, I remember Chris O'Donnell spending most of movie trying to steal dex from the rest of the expedition team so he can save his sister who is trapped in icy crevasse at 26,000 ft. He tries to accomplish this though impossible ice-pick jumps and surviving ridiculous crevasse falls. Does he succeed? You’ll have to watch. It’s actually decently entertaining, as long as you can handle the lack of verisimilitude

The original estimate of 1-4 weeks turned out to be incorrect. Now going on to week 5 tomorrow and feeling active, energetic, happy.  At some point I’ll slow down I know, but no signs yet, and for now still trying to take full advantage of every day. And with seemingly unending energy and a need for 2-4 hrs of sleep a night, I have been taking full advantage. My usual days pack-in a balanced mix of socializing with friends, spending time with Alpen and Bree, and completing backlogged tasks around the house. Then after 2 hours of sleep, I wake as if I just downed 2 cups of coffee, and I accomplish my night business. The dex makes me feel alert and motivated to get things done! Even in the middle of the night. So much drive in fact, I feel if I had been able to take a week of dex every few months, I would have gotten so much more done. (Not that this is the most important thing in life, but it would have reduced stressed and released more serotonin).  Falling and staying asleep is hard and I usually start by trying to squeeze in 1-3 hours of sleep to start the night. This leads to a 2-4 hour awake period where I tidy-up the kitchen and then get on the computer. I organize photos, respond to emails, do internet chores, read, make plans for the next day. Essentially TCB (taking care of business for the non-millennial). Then back to sleep or rest in bed quietly for as long as I can before I feel too hungry for food or tasks.

On a non-medical note: our 4th year wedding anniversary is tomorrow! September 10th! I guess that’s now today because it's 2am.  I mentioned I write in the middle of the night now, right? I’m so happy to have made it to this date and be feeling well enough to be able to spend quality time with Briana. It's gonna be an emotional day for both of us. So hard not to think about what would have been. We got stuck with something terrible that neither of us asked for, and it’s still difficult not to wish for a different outcome on our relationship. Not knowing our emotional state, we decided the best plan is to stay home together. Our plan is to take-out a quality dinner from a nicer restaurant, and then head downstairs to watch some US Open semi-finals. We might fit in a game of Patchwork, the 2-person board game we both enjoy.

In past years, around the anniversary,  we’ve gone up to the family Biz Pt house for a night away. This year we waited too long and the place was already booked for this weekend. However, we did get it booked for next weekend, so we’ll celebrate more then.

Speaking of nights away. We were able to escape to the Sleeping Lady Mountain Resort in Leavenworth, WA last week. We ate well, I had an exceptional birding morning and we hiked 4.5 miles along Icicle Creek. I topped-it off with a chilly sit in the creek, then we drove home to pick up Alpen from Oma’s and Opa’s house.  A marvelous one-night stay.  Get ready for some juicy birding details in the next post.

Thank you for all the donations, letters, and emails. I’ve been emotionally in a good place through all this, and a huge part of that is because of all the kind words, pictures, and recounted memories people have been sending. My recent tears have been ones of happy memories and not sadness. Thank you0

-D

2017 anniversary.Start of cake tradition at Biz Pt

2018: The year of famous blackberry grab attempt

2019
do you see the pattern?

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