Breaking Up Is Hard To Do
Why Am I Tired?
A few months ago, I become increasingly fatigued doing my normal daily activities. For a 64 year old this could mean a multitude of things. To begin with, it was during the brutal heat wave Southern California was going through. It would be naive of me to think it wasn’t adversely affecting me. That wasn’t what I was thinking though. I have myelofibrosis, which to this point has stayed dormant. For the most part, I haven’t seen any noticeable symptoms. Until now. Fatigue is a symptom. All I could think of now was after battling leukemia (CLL) on and off for eight years (currently in remission) — it was the bone marrow cancer’s turn.
I had my oncologist run blood work and do another ultrasound to determine if my spleen had swelled anymore, another telling sign. I really didn’t want more cancer treatments, and with myelofibrosis, the end game is a bone marrow transplant. Not at all on my bucket list. Ironically, about the time my tests came and went, my fatigue lessened. I’m was still tired, but better. The blood work showed nothing to set a treatment program in action. That said, monthly blood tests are now the course of action for the foreseeable future.
My doctor’s conclusion was that the fatigue probably wasn’t cancer (or if so not worth addressing directly as this point), but maybe just a virus of some sort making its way through me.
Now while a virus might have contributed to my newfound fatigue — it wasn’t the main cause though. Once I turned 65 in November I went on Medicare, completely changing up my insurance coverage. That was accompanied with setting up relationship with The City Of Hope cancer center. Within two weeks I was given a multitude of tests including a PET scan and a bone marrow biopsy. The myelofibosis had officially joined the party according to the biopsy. I’m in that space of pre-disease purgatory. I see the barbarians outside the gaits and they aren’t going anywhere. It’s just, when are they going to charge the castle? As a response, I’m in line for a clinical trial they’re running. This is a good thing and I’m all in. I feel for the first time since I was diagnosed with CLL in 2015 that my healthcare support is where I want it to be. I moved back to Los Angeles and built a team I have faith in.
I’ve been accused in the past of not getting into the doctor early enough when something doesn’t feel right. I wasn’t going to let this be one of those times. The last eight years, my medical condition has become a main focus for me, becoming what I do. Whether I outwardly say it, it’s also become who I am. This view is reinforced by the fact it’s pretty much just me in my life except my daughter (who has taken agency and self-efficacy to levels I previously didn’t know existed, which is a good thing — most of the time). I have ample opportunity to spiral into the rabbit hole of what ifs. “The mind can make heaven of hell and hell of heaven,” as Burrows said.
Breaking Up Is Hard To Do
We are told to own our disease. The more complex and rare it is — the more we attach our identity to the disease. In some cases, this engagement saves lives. In other cases, we become insufferable to be around since the only thing that comes out of our mouths is related to our illness, either directly or tangentially. It’s difficult to be hyper-vigilant yet keep it hidden from others or not appear to be a one-dimensional.
Now for some people, oddly enough, having a disease provides a type of life focus that may have been missing before. Cancer and other major disease can provide a camaraderie with others who share it, especially when it’s rare. When the disease is in remission and we’re not currently feeling its adverse effects, we’re energized to fight for others who aren’t so fortunate. A cancer walk for survivors, for example, is like a meeting of old friends, friends who have made it through another year; and friends who can morn a fellow traveler who didn’t make it. The shared experiences are something unique, something that non-diseased friends and family can’t really understand. This focus on our ailments doesn’t really set the stage for a full life though.
When we break free of our disease, we have the mind space, and most importantly the energy to engage with the rest of our world. It’s almost scary looking trying to look at the world as through a more normal lens though. Your chronic condition isn’t gone, you’re just not letting its impact be as debilitating. “Normal” may actually be something obtainable. How much is real or how much is just an over-focus on your disease should be a discussion you have with yourself. Your doctor may provide life-expectancy projections and cautionary insight … but they aren’t in your shoes.
For some people I imagine breaking up with their metaphorical dance partner might be too much. The fear of change and loss of identity looms larger than undertaking those long pent away dreams and bucket list items. The relationship we have with our illnesses is that fork in the road that will determine the direction of our journey. Using your disease as a navigator can be a smoother easier road than the myriad of choices we have when we’re not sick.
My latest developments are a wake up call for me as a clinical trial could go on as long as two or three years. I can’t hang on to this restrictive (do I dare say abusive) relationship any more. I’ll have to have a sit down with my dance partner and tell them I’m relegating them to the sidelines — at least for immediate future. I’m sure they’ll be ready to step when needed if one of my cancers breaks free of remission.
But still, it won’t that easy.
In the words of the sage of the human condition himself, Neil Sedoka, “Breaking up is hard to do.”
Keep up the fight Clay! You can do it!