I find myself using the phrase "all things considered" more and more lately. When people have asked how I've been doing in this last phase, my go-to response as of late has been, "Actually, pretty good! ... all things considered." It's my attempt at brevity while still hinting at the nuance that none of the last almost 8 months (since my diagnosis, 10 months if you include the headaches leading up to it) has been ideal. (Granted, the last year or so really hasn't been ideal for any of us thanks to COVID.)
This duality of "staying positive" while also realizing it's okay to be frustrated and sad at times has really been expressed in these last 3 months while going through Interim Maintenance I. It's really pushed me to be as comfortable as possible with being forced into the passenger seat of my life for all of its ups and downs.
We last gave an update after my first chemo (i.e. planned) admission during this phase. Since then I've had three more chemo admissions. Obviously, each hospital visit has been unpleasant with nausea, lack of appetite, mucositis, and fatigue. Thankfully, those symptoms have seemed to resolve almost completely after being home for a few days.
While each of my four admissions had been originally scheduled for every two weeks, all of them were delayed by at least a week due to my platelets being too low. Even though I'd rather get this all over with as soon as possible, this extra time aided in my recovery between visits and gave me some time to do more "normal" things while I was feeling well. My brother Tim and his family came into Indy for a visit and I was able to spend time with them, which wouldn't have happened if I was stuck in the hospital (due to COVID visiting restrictions). I was able to see my parents in person(!!) for the first time since my diagnosis while we spent time with my Mom's family to celebrate my Grandma Mary's life after her passing. I was originally supposed to spend my 26th birthday in the hospital, which would have been super lame, but thanks to my low platelets Anna and I were able to have dinner outside at one of our favorite Italian restaurants (the first time since COVID started) and spent the following weekend exploring Cincinnati just for fun. I was able to join Anna as she was a bridesmaid in her cousin's wedding in Kentucky. Thanks to the amazing vaccines, we even were able to hang out with several of our friends as they celebrated the beginning of summer, homeownership, being done with med school, etc.
I also started both occupational therapy and physical therapy in April, which has really helped me to recover a lot of the strength that I lost. I've made so much progress that I haven't needed my leg braces for the last couple of weeks, and I have finally felt comfortable driving again. 🙌
However, unfortunately, late in April, the cofounders at the startup I was working at decided they needed to lay off most of the company - myself included. Thankfully, due to the Texas state continuation ("mini-COBRA") law (where the company is based), I'm able to keep my health insurance for the remainder of the year which was a huge relief. (A quick aside - if that company was based in Indiana or the five other states where no "mini-COBRA" laws exist, then I wouldn't have been able to stay on the same health insurance plan and would have been forced into the individual health care market.)
So yeah, there have definitely been plenty of ups as well as downs in the past few months, but overall I'd say it's been a good couple of months.. all things considered.
So what's next?
Yesterday officially concluded the end of Interim Maintenance 1, and I was scheduled to start Delayed Intensification today but was delayed (ironically) until next Monday due to low platelets and ANC. Delayed Intensification will be roughly 2 months long and this phase is going to be much harder on my body than the last one. While the treatment is all scheduled to be outpatient, I'm likely to see my counts drop more than I did in the last phase due to the more potent chemo drugs. This means I might still have to spend a few nights in the hospital at some point if I run a fever and will probably need at least a couple of blood transfusions at some point. Also, only the first week and 5th weeks are count-dependent, so I won't get breaks in between the weekly transfusions as I did in IM1. On the bright side though, it should hopefully mean this next phase actually does only last two months instead of turning into three.
I am a little anxious about this next phase since I'm currently feeling about the best that I have since last August and I know the next two months aren't going to be fun. It's been nice being able to be more self-sufficient lately, building up the strength I had previously lost, and I know I'll likely be weaker again for the remainder of the summer. Once I'm through this next phase though, I should hopefully get another little break with Interim Maintenance 2 (which will last another couple of months), before having radiation treatment for two weeks, and then I'll finally be in Maintenance where things should get much easier.
Anna or I will try to touch base and give an update in a few weeks on how Delayed Intensification is going. In the meantime, if you're wanting to know ways to help, check out our FAQ page. Thank you all for reading and keeping us in your thoughts! Also, don't forget to subscribe if you haven't already so that you'll get the next update in your email.