My Polycythemia Journey
Last updated: September 2023
Six years ago I was experiencing some strange health symptoms for which I could simply not explain. I thought perhaps I was starting to get high blood pressure? I started getting headaches and optical migraines, where I would have "floaters" move throughout my field of vision. I went to my walk-in clinic and the doctor did not seem to know what was causing this but had me do a full set of labs and sent me home. A couple of days later I got a call and my doctor said I needed a referral to a hematologist in oncology.
Oncology... there must be some sort of mistake? Oncology is for cancer, isn't it?
I met with the oncologist and was given another round of tests including some genetic tests. When the results came back the doctor diagnosed me as having Polycythemia Vera. JAK-2 mutations left no doubt about it. I had cancer.
Their dad has cancer
I had no idea what this meant at the time. The doctor sat me down and told me that I could have a decade or even two of a quality life. I was 46 years old and thinking to myself, now I'm looking at 10-20 years of life left if I'm lucky? Retirement planning just got a whole lot easier for me!
I was married and had two children in school. What would this mean for them? How would I tell them? Would I get to see them graduate? Would I be there to walk my daughter down the aisle?
I did not know how I was going to tell them at first. I figured that I needed to learn more about the condition and get a better handle on what it meant going forward before I told them that their dad has cancer. Kids hear that word and automatically jump to "Oh, my gosh, my dad is dying!" I wanted to be able to be open and honest in my communication, honestly conveying the severity of the situation but not frightening them unnecessarily.
We celebrated her life each day
8 days after my diagnosis, my mother was ill and we brought her into the hospital. Her doctor sat us down with an x-ray of her lung and showed us a large tumor in her lung and other spots throughout her body that indicated the cancer was metastatic and had spread all throughout her body. The doctor informed us that there was nothing that could be done aside from comfort care and that her time was very limited. She passed away six weeks from her diagnosis. It was a difficult journey for her, filled with indescribable pain and suffering. Our entire family shared that journey with her and we celebrated her life each day.
I never told my mother about my cancer diagnosis -- I figured she had enough to deal with on her own. Now it was even harder to tell my kids because they equated cancer to imminent death. I finally told them and assured them that I would be around as long as possible and would continue to fight this every step of the way.
For the most part, my life did not change all that much having polycythemia vera. I was able to maintain my normal activities, I continued to work as a soccer referee, I continued to be involved in my kids' activities, and I was able to remain working. On the outside, I do not think anyone would suspect that I had cancer.
I settled into a routine of monthly phlebotomies to manage my hematocrit and platelet counts. My doctor put me on a daily aspirin regimen and said that my best course of action would be to take care of my general health by eating healthy and getting plenty of exercises.
Part of my staying healthy regimen was to put my body into Nutritional Ketosis by eating a low carbohydrate and sugar diet. One thing I experienced when in ketosis was that my blood production slowed down considerably. Instead of monthly phlebotomies, I was sometimes able to stretch them out to up to five months apart. Your mileage may vary, but I have seen that play out in multiple cycles of nutritional ketosis. Always include your doctor in any major health plans you undertake.
More fatigue, less stamina
Over the past year, I have started to notice some more symptoms such as more fatigue and less stamina. Some of this could be attributed to the natural aging process, I do not know for sure. I have started to experience edema in my legs and have to be mindful to get up and walk around frequently throughout the day to mitigate those effects.
I have joked with people that my polycythemia vera is the "kindergarten" of cancers -- it gets your foot in the door and gets you a membership in the club but does not severely impact your life. I know that there are a lot more severe forms of cancer out there and I have been fortunate that this one has not run my life off the rails.
I find that the infusion lab is one of the most depressing places on the planet! I see patients in the stalls next to me month after month, and then they are no longer there. There is so little joy in the infusion lab... I do feel fortunate that I am doing as well as I am.
How do you feel about your support system?