Why are you doing the blog and why share your health status?

I have never liked hiding my personal situations including health. I’ve been known to be somewhat TMI when it comes to sharing, be it mental health, reproductive health, etc. I also strive to be my authentic self, both personally and professionally, i.e. not have an exterior shell that is different to my interior self. As I confront this new situation, I’ve reacted similarly, desiring to be open rather than secretive.

Both my parents were raised and met each other through the Christian Science faith, in which it is believed that disease is a mental issue and prayer is the answer. They left the church when they had me, but at my grandparent level, things were definitely weird when it came to illness. Perhaps my family history makes me want to rebel against any possible shame/stigma and be “out” with it to challenge stereotypes of sickness.

The blog is practical to me to not have to repeat what is going on many times. I can write it once, multiple people can read, even read links to more information, and you’re all caught up. You can choose to keep up with my blog if you’re curious. I also can choose what to share, how to share, and when to share it. If I feel later not like doing the blog, or not discussing something widely, I simply won’t.

Are you going to have chemo and/or take time off for treatment?

Not likely for the time being, and no chemotherapy or radiation because of the type of cancer. Since the “cancerous” cells are my regular blood cells going wonky and proliferating in the bone marrow and blood stream, it isn’t possible to target them like that. The treatments available for MPNs are more to try to address symptoms and slow down the process.

Medications are pretty experimental at this point. MPNs are new in terms of their discovery and classification. The first and most common gene mutation (JAK) was discovered in 2005, MPNs were classified as cancer in 2008, and my specific gene mutation (CALR) was discovered in 2013. Since there is risk of blood clots if your platelets are high, many people with MPNs are on baby aspirin once a day to thin the blood, including me.

The only possibly curative treatment at this time is a stem-cell transplant for your bone marrow. It isn’t always performed, because it is very risky in terms of survival rate. Patients have to be in bad condition blood-wise, yet be young/healthy enough to survive, to have the correct odds for undertaking it. For the transplant, you do have chemo then to eradicate all your existing bone marrow. After the transplant occurs there is a good chance of graft vs host disease taking you out. So it’s not the time for that for me.

How are you coping with all this?

I doubt anyone is well-prepared for learning they have an incurable illness. But what are you going to do? I see it no differently than other hard but inevitable things that people have to go through in life, for example, loss of parents. These events are intense and life-altering and end up happening eventually to most of us. Still life just keeps on keeping on, until it doesn’t. I do have several factors I believe are in my favor to help me be realistically optimistic right now.

For one, my earlier results looked like my diagnosis was leaning to something terminal on a more immediate basis with scary survival rates (MF). My anxiety, coupled with my ability to understand scientific research articles, did the work for me of preparing for the worst. At this point in time, I do not have the scary MF diagnosis, which is a total gift. The diagnosis is “MPN most consistent with ET, also with hypereosinophilia and concern for hypereosinophilic syndrome.” I could receive a scarier MF diagnosis later if my fibrosis or blasts increase, but I am grateful to be where I am right now in comparison.

Another helpful aspect to me personally is my lack of belief, in really much of anything, except science. I’ve been ambivalent about the meaning of life even to a nihilistic point at certain times. I am definitely not feeling like I am being tested, that this was brought upon me in some way, or that things happened for a reason I have to figure out. It’s just some wild biology going on. Plus I’ve never been interested in living until I’m 100, nor have I had a really specific bucket list of things to accomplish in life. I’m in the “here for a good time not a long time” camp with Drake. And I have good mental health support to work through the psychology of my situation, which I find really interesting to confront.

Regarding psychology, I’ve always had some fascination with mortality and death, and I’m probably not alone from what I understand. I’ve always loved psychology, but in recent years I’ve also been passionate about minimalism and efficiency. With some combination of the three interests, I read about and started the process of Swedish Death Cleaning late last year. Right now I’m wrapping up my personal estate planning, which to me is a happy coincidence that makes me feel more empowered/prepared for what will come (for all of us).

Finally, I actually feel privileged to even be aware I have this condition. I have the access to routine CBCs and ability to research and self-advocate my case to appropriate levels of expert care to address a rare disease with few symptoms. I live in a place where there are multiple experts in this field I can consult, with good insurance coverage and a job that allows me time off for my medical appointments and commute. I don’t have any dependents I need to worry about. I do have a supportive partner, family, friends, and kitty to help me cope. And, of course the blog. 🤓 🙏