I have been missing for almost a year and a half. Life has found a way of being very busy between a teenage daughter, new baby, spouse, work, the farm, and other activities I have not found the time to devote to making entries on this site like I wanted to. I am still alive and kicking though.
The last update I made was a year with polycythemia vera. Following that we had our second apple festival for Shaylee’s SurviveAll Bands and that went pretty well. We had a good time and actually made some profit so that we can start donating to MPN Research Foundation, probably after this years festival in October. We plan to donate on a day that has a match so that our donation will automatically be doubled.
So what about my PV and treatments?
So what about my PV and treatments? As far as the PV goes not a lot had changed besides every doctor I had left the VA. I ended up going between a nurse practitioner who is no longer there either and the pharmacist. Don’t ask me I have no idea why the pharmacist. During that time I started having a lot of tingling and numbness in my arms. I was afraid it was a blood flow issue so I mentioned it to the NP at oncology and he referred me outside of the the VA to a Neurosurgeon.
After numerous x-rays and nerve conduction studies they decided it didn’t have anything to do with neurology and have referred me out to a muscle doc for some more checking. It still occurs and we are still looking for answers.
Somewhere in there that NP left and I mainly saw the pharmacist. At one point she mentioned that she wanted to try to lower my dosage on the Jakafi. I could not understand this, the medication was working my levels were pretty good so why change anything at all, let alone reduce the dosage. We feel that she was just wanting to experiment to see what would occur. I did not much care for this thought. The experimentation was over, I was on a plan that was working and I saw absolutely no reason to change it. I made this very apparent. And after the second time she suggested it, I have not seen here since.
This all sums up my last year up with my MPN, same medication, some new symptoms of something still unknown, and a lot of different faces all the way up to my most recent appointment which I will cover in another entry.
The family front.
On the family front Shaylee is turning into a beautiful young woman and Dad is not so cool anymore but we still have our laughs. She’s doing dance as usual and now track & field. She aspires to play basketball when the season starts.
Rhylan is growing like a weed, walking, talking, telling us NO. The usual toddler stuff at 1.5 years. She gets clingy with me on the weekends sometimes it can get a little frustrating but I still love it.
Keep watching for the next entry on my most recent Doctors appointment and what has occurred. See you next time.