My last blog on this site took me to the end of June and my next hemetologist appointment. During the month I had had weekly vampire sessions. They were time consuming but not too bad. The only problem was being stuck several times when my veins did not co-operate.
My husband and I were waiting for the confirmation of my disease and it did not help that the appointment was put back for a day. On the 26th June, we discovered that I had the JAK2 mutation in my bone marrow which led to Polycythemia Rubra Vera. I wish it had a shorter and catchier name but it is known as PV in blood disease circles.
Next, I had a month of weekly phlebotomies to reduce my blood pressure. This involved draining 500 ml of blood from me. To my disgust this was tossed into the hazardous waste bin as blood from a cancer care unit is not useful. Like many others, I had thought it might be given to people who didn’t have enough red blood cells . The other treatment was to start taking a daily chemo drug.
I was disconcerted to read that drinking was not allowed with the drug. It was Canada Day weekend and we were going out to dinner and I also had a bottle of very pleasant rose in the fridge. At dinner I ordered the large sized white wine and at home I proceeded to empty my bottle. I did this by July 1 and then started on the drug. I was scared stiff when I swallowed the first capsule after reading the side effects info given to me at the pharmacy. The first week was rough. I suffered from increased nausea and dizziness and had a nasty taste in my mouth. Generally I felt strange and wondered just what those capsules were doing inside me. Now I’ve been taking them for a month and am due to se the hematologist again this week. He’s ordered blood tests to see what my various levels are at this stage.
This is the second time I have written this blog. I do not know what happened to the first version. Somehow I vanished it. Before this cancer thing, i did not really believe in chemo brain but now I do. I have done some daft things this month. i am extra clumsy and that is saying quite a lot. Yesterday I dropped a full tub of yogurt on my left big toe and today it is purple. I believe it is only bruise but it sure is sore. Writing has become a major effort. I just cannot concentrate as well as i did. Goodness know how I will continue with my two main projects. I’ll keep you up to date.