Bryce
Following cycle 1B (what I was previously calling cycle 2) I spent 2-3 weeks recovering at home and was supposed to be readmitted for cycle 2A on Thursday, August 13th.
Blood Clots
Several days before my appointment with Dr. V I started have pain in my arm beneath my PICC line. The pain only manifested if the affected area was pressed against something and was minimal, maybe 3 on a scale of 10, but wanted to alert Dr. V because of its proximity to my PICC line. One of the reasons I like Dr. V is because he gets shit done. He looked at my arm and immediately made a call to get me into the vascular lab for an ultrasound. As the heading suggests, it was a blood clot caused by the PICC line. It freaked me out because you hear about people dying from blood clots but that’s apparently highly unlikely when treated; 1% according to Dr. V. I’ll have to take blood thinners for the duration of my hard chemo (through Nov/Dec), but it will resolve itself with time. The pain has subsided after 3 days of blood thinners but the clot still exists as of this morning’s ultrasound.
Hard Stools
In my last post we learned hard stools + blood thinners are two components of a GI disaster. Welp, disaster struck again once I started the thinners. Fortunately, this time around I had started using a softener ahead of time in anticipation of being admitted and the chemo aggravating my intestines so it wasn’t as bad as it could have been. I continue to use softeners and the care team has green lit me for use Miralax OR EVEN a laxative at my discretion; I call this progress, last time it took 5 days last time for them to give me Miralax. As of this morning, it’s all good in the hood.
Liver Enzymes
My liver enzymes were mostly normal when I left the hospital at the end of cycle 1B. The last chemo of the cycle is known to be hard on your liver. In the weeks that followed my enzymes continue to rise to levels anywhere 3x-4x the normal range. I wasn’t in liver failure but the ole liver was sending a warning.
Acute Lympoblastic Leukemia tends to affect children and the elderly; it’s rare for someone in their 30’s. Additionally, because the prognosis for a AYA (age 19-35) is bearable there’s a lack of willingness to volunteer for trials to try and improve the treatment – why gamble on an unproven trial when you have a 50% chance of being cured with existing protocols? As such, there’s limited research on how to best treat patients my age. They have protocols for children which are much more toxic than the protocols for a 50+ year old. My care team opted for hybrid approach where we added a couple pediatric chemos to an adult protocol. Enter peg-asparaginase, a pediatric protocol chemo, which my liver handled in 1A but hated in 1B.
MB and I drove down to Little Rock on Thursday expecting to be admitted only to discover Dr. V wanted to wait a few days to see if my enzymes dropped. Real talk, I was distraught about delaying treatment and went into a three day depression due of the thought of dying from leukemia because my liver was too weak to handle chemo.
Liver Update
Good news – As of this morning, August 19th, three of they six enzymes they’re tracking are back in a normal range and the other three are only 2x higher than normal. My liver is recovering 🙂
Cycle 2A
I was admitted Monday, August 17th; liver enzymes decreased but remain 2x-3x above normal. The good news is we’re only removing peg-asparaginase from my treatment this cycle; I’ll receive all the other scheduled chemos (Hyper-CVAD protocol) this cycle including at 48 hour dance with the red devil which means I’m not going to die from lack of treatment. I really wish I knew this on Thursday and could have avoided a weekend of depression. So far everything is going as expected on this stay and I have nice room again, holla!
As I’m writing this, I just thought of a great couples costume for Halloween for MB and I this year. This may be the first time I’ve ever been excited about a couples costume. Spoiler… The thought of Mb wearing this devil outfit makes me giggle.
Metrics that Matter
- Physical feels: 7/10
- Emotional feels: 7/10
- Cumulative hours of chemo: C1A-67.33, C1B-39, C2A-5
- Butt: still intact
