#11 Be Flexible
My original admission date for my bone marrow transplant date had been set for May the 4th (the force was obviously not with me). I had set my last day of work and was going to take a few days to pack and spend with family before I embarked on a thirty day stay in the hospital. Unfortunately it was not meant to be as my white blood cell count had skyrocketed and my disease was not under control enough for the doctors to feel like it would have given me a fair shot at the transplant being successful. It was postponed until later in the month. It was supposed to have been later in May but again, that fell through.
The company responsible for refilling my specific chemo medications were late in getting my meds delivered. This created a chain reaction with my white blood cell count, already high, to increase even more. Without having the medication necessary to get it to drop, it was extremely high when I finally did get the chemo. However, by this point, there is a term called tumor lysis syndrome whereby the cancer cells are broken down and excreted by the body.
From PubMed: (full article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3437249/)
“The tumor lysis syndrome occurs when tumor cells release their contents into the bloodstream, either spontaneously or in response to therapy,”
“These electrolyte and metabolic disturbances can progress to clinical toxic effects, including renal insufficiency, cardiac arrhythmias, seizures, and death due to multiorgan failure.”
As a result I was subsequently hospitalized to monitor my recovery. So I was in the hospital during the month of May but it was not for the reason I had hoped.
Our initial plan had been that I would be admitted for my bone marrow transplant in May and spend that month and part of June in the hospital while my wife and kids finished school. That way, we would basically be able to quarantine during the summer and give me the best chance at staying healthy while I recovered and my immune system rebuilt itself. Since both May dates were now no longer possible we had to readjust our initial plan and include my mom as one of my caregivers since my wife would have to go back to work before my one hundred days of recovery were up.
Alas, even our next plan failed to come to fruition. Of those with CMML, one third of cases develop into AML. I was one of those lucky ones. That being the case, this meant that I was no longer a viable candidate (at the time) for a bone marrow transplant. I’d have to get my AML under control before I was to go for a transplant. This meant that I would be subject to much more aggressive chemo. I started this chemo treatment in early June. As a result this landed me in the hospital while they monitored several things. They were still looking at tumor lysis syndrome since my white blood cell count had skyrocketed again during the time between my last oral chemo treatment and this current IV chemo treatment. A few days into my hospital stay I also spiked a fever, which was one of the major reasons they had hospitalized me to begin with (the fear of that happening and treating me while I was feverish). I maintained a fever for 10 days.
The whole process meant a twenty six day hospital stay. I was in the hospital during 4th of July and finally got out around the middle of July. Now I needed to undergo another bone marrow biopsy to determine the efficiency of chemo treatment and if I were able to go for a transplant.
Despite the chemo working, it didn’t work quite well enough and my blast count was still above 5%.
Blasts as “defined” on Cancer.org:
“A key element is whether the cells look mature (like normal blood cells) or immature (lacking features of normal blood cells). The most immature cells are called myeloblasts (or blasts).
The percentage of blasts in the bone marrow or blood is particularly important. Having at least 20% blasts in the marrow or blood is generally required for a diagnosis of AML. (In normal bone marrow, the blast count is 5% or less, while the blood usually doesn’t contain any blasts.) AML can also be diagnosed if the blasts are found (using another test) to have a chromosome change that occurs only in a specific type of AML, even if the blast percentage doesn’t reach 20%.”
This meant I’d need another round of IV chemo and likely another hospital stay. This time my white blood cell count was low so I was not admitted early to watch for tumor lysis syndrome but was able to do most of the treatment in the clinic and I could stay at home for most of the process. However, a week or so after my final treatment I developed a fever and was admitted. This time the fever only lasted for a few days and after twelve days I was allowed to go home.
It was now late August or early September. My wife would be going back to school soon and our original plan was a thing of the past. The whole process meant we had to be flexible each and every day in the event that something could change. I could spend 4-6 hours in the clinic. I spent a combined total of seventy six days in the hospital.
Plans were always changing.
Between both our long term plans and daily schedules, my family and I had to always have some type of flexibility in case there were adjustments that needed to be made. I packed for long days in the event that my clinic days ran long. I constantly had a bag packed on the off chance that I was randomly admitted for some reason. I was fortunate to only develop a fever twice (and both were expected) but there’s always the chance that something could go wrong.
We couldn’t be tied to a set plan or schedule since everything changed on us by the day. Being flexible allowed us to maintain a relatively even keel through the process and it meant that we weren’t exasperated by the sudden changes. We almost came to expect the fact that our day would not go as intended. We were thankful for the days that were routine but we were not caught off guard when routine needed to change.
Have a plan, but understand that cancer doesn’t. Cancer will fly by the seat of its pants and while we want to be proactive, sometimes we’re best left in being flexibly reactive.