Bryce
It’s been two months since my last post. A lot has changed but at the same time it feels like not much has changed.
Treatment Update
We did the million cell test in January and it came back complete clean. No sign of leukemia could be found in my marrow with the deepest testing commercially available. It was a huge relief. MB and I laughed and cried. It’s the first time in 7 months where I actually felt like I could exhale and truly survive this. So many prayers were answered.
Blinatumomab
In a previous post I wrote about how the team at MD Anderson recommended adding Blina to my treatment plan because they believe it will reduce my relapse risk down significantly. Blina is promising but not yet approved for frontline treatment. As such, insurance denied the request. We requested adding it into my maintenance treatment every three months…. also denied. UAMS was kind and offered to split the billed cost with me since insurance won’t cover it. Want to guess how much my portion would be? $45,000 per week and I require 16 weeks of treatment or $720,000. The silver lining to this is that in the event I do relapse, Blina will be available as an option to get me back into remission for transplant.
Maintenance
With Blina no longer on the table, we moved forward with traditional POMP maintenance. The protocol consists of a monthly IV chemo, weekly oral chemo, daily oral chemo, and week of steroids which coincides with the IV chemo. The protocol lasts two years. I officially started January 25th.
Dangit Craig
Everyone responds to chemo differently. Turn out, I have a sensitive liver that we’ll call Craig. Craig had a fit during my second cycle of intense treatment but quickly recovered. The first week of maintenance was fine. My labs at the start of my second week showed an elevated ALT of 55ish; normal is below 52. My oncologist noted it but said it wasn’t anything to worry about unless the trend continued. The next week my ALT doubled to 101, and I was told to hold all oral chemo for two weeks. Two weeks felt excessive. I’m no oncologist, but logically it makes sense to me that patients who receive the most chemo survive the longest so I’m all about consuming the max dosage of chemo. Give me all the chemo.
I wanted to prove my oncologist wrong and restart chemo after a one week break. I researched how to cleanse your liver and lower your enzymes. Craig was about to be my sole focus. Eat more walnuts, check. Drink a couple cups of coffee per day, check. Drink beet juice, bought a juicer check. Eat more greens, add to juice check. Reduce sugar intake, kinda check. Reduce processed foods, check. Increase exercise, check. If it was on the list then I tried it. The next week I walked into the cancer center expecting Craig to shine like a new car. My ALT tripled from the previous week to 335 or 6X the normal limit. Dude, Craig WTF.
Feeling demoralized and increasingly concerned, I elected to continue to give Craig the spa treatment; more juice, coffee, nuts, exercise, etc. Don’t let me down CRAIG. The following week my ALT jumped to 565 or 11X the normal limit. My oncologist and I discussed how to lower elevated liver enzymes a couple weeks prior and his only advice was stop taking Tylenol and stop drinking alcohol, both of which I don’t consume because I need Craig in tip top shape. We discussed milk thistle supplements and it was a bit of a gray area; he didn’t tell me not to take them but didn’t really bless it since it can affect other enzymes in your body. Well, after Craig’s ALT hit 565 I decided other enzymes be damned; we need to get Craig’s enzymes in order. Further, I found a study in which pediatric patients were given milk thistle during maintenance and their livers worked better than the placebo groups’ livers. Milk thistle, check.
Enter week 5; I’m doing everything for Craig short of adding coffee enemas to my liver cleansing protocol. Come on Craig, you can do this. Finally, FINALLY Craig decides to play ball. My ALT dropped to 235. Still high but substantial lower than grade 4 hepatotoxicity. The trend reversed after a 3 week break; my ALT dropped further to 101 and we started chemo again on Monday. Also, because Craig is sensitive and lazy, the initial two weeks of chemo from the first cycle of maintenance wasn’t processed as quickly as expected. It hung around in my bloodstream and killed all my neutrophils so I’m severely neutropenic again. I hate being neutropenic but they’re confident that I’ll bounce back quickly with the lower dosage and daily growth factor shots.
Return to NoRmAL
Our days still look largely the same with the exception of both of us working. Mary Beth goes into the office and I work remotely. MB was vaccinated in January and that’s alleviated some of my COVID fear but we’re still very much living in isolation. When we’re not working, we’re hanging out at home which can be pretty lonely. I plan to get vaccinated as soon as my counts are stable and it’s available in hopes that we can start to see friends/family and reliving life.
After being on a LOA since late June, I returned to work on Monday, March 1st. It was later than originally anticipated, but I needed the time. I’m still concerned it may be too early as I’m operating at a lower cognitive function and energy level than pre-diagnosis but each day seems to get a little better. It’s nice to have some structure to my day and feel like I’m emerging from the chemo fog; chemo brain is real. I have yet to make any contribution beyond restoring access rights to the programs I previously used, but one day I may do something impressive.
Metrics that Matter
New stage of recovery comes with new metrics. Not sure if these will be consistent from post to post but it’s my blog and I’ll adjust as I like.
Hair
I HAVE EYEBROWS AGAIN! I thought my hair would bounce back fast; it didn’t initially but the sprouts are finally growing. My mustache came in full force, thicker than pre-cancer. Mary Beth trimmed it for me today with scissors because “It’s disgusting”.
Physical feels
My perception of physical feels has probably changed since this all started. I’d rate myself a 6/10 bc I’m exhausted from work but I have to believe I felt way worse during the intense treatment and also rated it as a 6. Bogus metric. Let’s get some actual data. The graph to the left shows the change in my Peloton output. My output dropped to 101 which provoked me to go see my PCP and later get diagnosed. I retested after completing 6/7 months of chemo my output dropped to 71. In the last couple months I’ve juiced my output up to 104. I’m on steroids this week and crushed my last ride; it’s fun to see the progress. One of these days I’ll get around to trying to build my upper body strength. In the meantime the stamina and dexterity gained from submitting service now requests for access rights at work will have to suffice.
- Butt: This were great until I went neutropenic and had to stop eating fresh fruit and vegetables
