Bryce
I’m currently writing from the infusion center at Mercy while neutropenic and receiving a unit of platelets. The nurses asked if I’d ever had a reaction to platelets. For some reason responded, “not yet”. Welp, guess who’s having a reaction? This guy.
The game of Frogger isn’t over yet but fortunately, the intense chemo is! I’m guessing I have a couple weeks left in the danger zone and then my blood counts should return to normal; not cancer normal, but normal person normal. Really looking forward to being able to eat fresh fruit and vegetables while receiving normal amounts of a oxygen to all my organs. AYO!
Big Thank You
The past 6-7 months have been hard, really hard, but all of you have helped us get through it. The texts, the calls, the prayers, the well wishes, the meals, the gifts, the NA beer deliveries, the wine deliveries for MB, the acts of service, the face masks, everything. All of it has meant so much to Mary Beth and I and we’re so grateful for all of the support we’ve received. We’ve been humbled more times than you can imagine and can’t wait to pay it forward. Thank you all. We love you and appreciate everything you’ve done for us.
4B Recap
Cycles 2A, 2B, and 3A were delayed anywhere from a couple of days up to a week, and the last three cycles were all on time. The delays gave me extra time to recover and build strength leading into the next cycle. I missed having the extra recovery time meant I started 4B feeling pretty beat up but excited to wrap up my last inpatient treatment. My hospital stay was uneventful. I super hydrated with Liquid IVs and four liters of water per day while walking 2-5 miles per day. I expelled the methotrexate quickly and got released on day 4 rather than the standard fifth day. My parents scooped me up and we took a few celebratory pictures in front of the hospital before heading home. It felt so good to be done. So so good.
B cycles have shorter hospital stays but they kick my butt in terms of fatigue and blood counts. Since returning home, I’m exhausted and needed two bags of platelets and one unit of blood. Most of my time has been spent resting in my recliner, but I also took a little time to pamper myself while in said recliner.
What’s Next
As Mary Beth and I have learned throughout this ordeal, the plan is always changing. My doctor at MD Anderson spoke with the other leukemia doctors at MDA, and none of them recommended transplant. AYO! Further confirming our chemo only approach is the best approach.
MDA is doing a frontline trial where patients do 4 cycles of hyper CVAD and 4 cycles of Blinatumomab; results are promising. Blina is an immunotherapy treatment that’s approved for relapsed and refractory ALL and is far superior to previous treatment methods. Some believe Blina as a frontline treatment could be a cure to B cell ALL. It’s too late for me to join the trial because I’ve already completed 8 cycles, but the MDA team recommended I add 4 cycles of Blina to my treatment. They think it can cut my risk of relapse in half, possibly down to 10% or less. The treatment would be another 6 months with four more hospital stays, but it seems to be relatively well tolerated by patients in the ALL FB group.
The problem is we need insurance’s approval to move forward with the treatment. Blina is not currently approved for frontline treatment, hence the tial, so unless my next biopsy comes back with disease it’s unlikely they’ll agree to pay for it. My next biopsy is January 11th and we’re doing the million cell test. Assuming it comes back clean and insurance refuses to pay for Blina then I’ll move on to maintenance. Things become a bit more complicated if a minuscule amount of cancer cells are found and insurance still rejects Blina. We need it to be clean because I’m not sure I can mentally handle minuscule amounts of cancer and moving on to maintenance. I don’t want to maintain a few cancer cells; I want to eradicate all of them. If you’re looking for a specific prayer for me, it’s for a clean biopsy and insurance approval for Blina.
Return to “Normal”
MB returns to work in a couple weeks. I’m excited for her but also super nervous. Theoretically I should have normal blood and functioning immune system by then, but I’m anxious about her picking up Covid or a cold or something else and bring it home. We’ll both get the vaccine as soon as it’s available which will alleviate some of the fear. It will be good for her to have human interaction with someone other than myself.
My return to work is TBD. I’m hoping for late January or February but I need to see if I’ll be doing Blina. If not, I need to see how hard the maintenance chemo hits. My fear is returning too early and being super unreliable because I’m always at the oncologist doing labs, needing blood products, or too fatigued. Maintenance should be much easier, but Ive read some horror stories online as everyone responds differently.
Metrics that Matter
- Physical feels: 7/10 – I am tired
- Emotional feels: 8/10 – So so glad to be done with Hyper CVAD but anxious about the plan and biopsy
- Hours of chemo: 1A-67.33, 1B-39, 2A-66.33, 2B-38, 3A-66.33, 3B-38, 4A-66.2
- Butt: I haven’t had any issues with blood the past two cycles but I developed a hemorrhoid last week. It’s rather unpleasant and painful.
