8/9 back in hosp to start round 2

In the hospital at the moment for at least next 3 nights. Lots to say here, so could be a long one, could be heavy as a warning. Firstly, to follow up from last week, unfortunately we had car trouble on our camping trip as soon as we got to camp. So it started with being 2.5 hours away from Seattle with a dead car battery, an acting up transmission, and no cell service. That certainly put a damper on things. Thankfully, my brother and Suzie showed up that night as scheduled and we were able to jump the car in the morning and drive out. We got home fine, but took the car in on Tuesday. It was still fun to get out and glad we did it, however it fell quite a bit short of our expectations for the trip. We spent the way back trying to figure out if we needed to get a new car, as this was not the first time the Volvo has had issues getting to a trailhead.  We figured if a car can’t get us to the trailhead, then we need a new car. So driving back on highways is a great time to shop actually. It gave us something distracting to do and analyze. Alpen of course was oblivious of the whole episode and had a great time camping. Lots of rocks to climb and slide. Lots of logs to work on his balance. He spent a good 10 minutes just walking the 4 x 4s that conatined the gravel at our tent site. To close up the car story, I took our much loved 2004 Volvo XC into the shop and they replaced the battery and they seemed pretty confident that the whole ordeal could just fixed by the new battery! That’s good news. And now at least we have had that initial discussion on cars and car colors before gotta go that route.

Now for the less fun stuff. On Tuesday, we found out that the first round of Blincyto did something, but not enough. It left me at 0.06 disease, which is drastically different than 0.00. It means my chances of Blin putting me in long-term (1year+) remission are basically gone and we should be thinking about next steps. The only viable next steps are achieving complete remission and then going to transplant. More on those implications later. But while transplant team is doing their thing, we’re doing another round of blin. Were doing another round because the literature shows a 10% chance of getting to zero in Round 2, so there is a chance I can still achieve the necessary remission by Blin. But a round 2 zero does not come with the same long-term chances that Round 1 does. Therefore, this round will buy us some time while keeping the disease burden low. Unfortunately, I’m staring down the tube at a 2nd transplant. I kinda knew I was gonna get here after the last relapse, but I left out hope for Blin, bc a few patients have achieved a multi-year remission. I’ve been avoiding a 2nd transplant for all the reasons I outlined before after the CAR-t trial. To sum up, it’s dangerous, with low 1-year survivorship and even lower 3-year survivorship (like <10%). So this is obviously very bad news and left us about as devastated then the news of the first relapse--but at least we had better options then.  There’s even one more obstacle to get to transplant, which is I need to get to a remission. If Blin doesn’t do it, there is one more immunotherapy drug that we have been saving “in our back pocket,” as Dr. Cassaday like to say, to take for this scenario, it’s called Inotuzamab and get most patients into a complete remission, but often a short one. If it doesn’t work, then I don’t know what we will do.

Both Bree and I have been trying our best to take on normal life, but it’s been hard this week. We’ve both been going through all the “what-ifs” with my 7 years of treatment--times we coulda done this quicker, or how unfortunate it was that the doc was out of town that week. I look back to pre-diagnosis when I was a single word away from running a blood test 2-weeks earlier (after examining an enlarged lymph node on my neck, and holding the blood orders in her hand, she said “but, but you look so healthy, you don’t feel sick do you?”). With an earlier blood test I would have lowered the amount of time I had high levels of leukemia circulating my body--time when it was finding all the hiding spots. Spots that are haunting my remissions now. I’m sure your reaction is the same as everyone else’s, you can’t dwell on the past, you gotta move forward. Which is true, and I believe in too. And this belief is what’s gotten me to where I am. But it’s different now, because then I had good options--now I don’t.  So when forward is dire and scary, it’s real easy to move to the what-ifs.

One of my nurses remarked last cycle that, “hey, you made it 6 years, a lot of people don’t.”  No one has said that to me yet, and it shook me some. While yes, I am grateful that modern medicine has extended my life--and we’ve put together a great life, I don’t want to underscore that in any way--but it also hasn’t been the easiest of 6 years. What would be great is if I had made it 20 or 30 years, ya know?  Briana and I calculated a conservative estimate of how much time I have spent in 8SA and 8/7 NE and it was staggering: 4.5 months. On top of that, I spent 3 weeks at Swedish Cherry Hill for the neuro surgery to fix the Ommaya. So ya its 6 years, but with 5 months of that in the hospital, and another 2 year of being sick and in recovery after Induction and Transplant.  I know ya’ll know already it hasn’t been the easiest of roads for us. I think I’m explaining this because both Briana and I feel isolated in this pain. No one can truly know what it has been like for us. And that’s normal. It’s the nature of anyone’s experiences like this. All the uncertainty and anxiety, the imprudence in giving Alpen a sibling when we want to, and the missed events--hell we’ve missed 5 driveable weddings because of ALL--are ours and our alone.  We can share it with friends and therapists, but it’s not the same.

So that’s where we stand at the moment. On the good news, tonight I can say that our families are doing something to directly help people like me. Thanks to some of you who read this blog, our parents raised $5276.50 for cancer research. Research that will help new clinical trials start at the Hutch or fund start-ups in South Lake Union that could make the next CAR-t mutant that’s better than ever before. One that would have cured my cancer last year and I wouldn’t even be needing to write this post from the hospital.

Nice being able to have Alpen visit (aka he's not sick) (and that's Kombucha on the windowsill).

A couple pics from our hike to summit lake on Wednesday.