Time for a much overdue update. Today is a special day of sorts., as today marks my one year anniversary of my diagnosis. Happy Birthday to my MPN, Happy Birthday screw you, just kidding, well kind of.
Later in this entry I will provide more updates, as well as the on goings and going ons but first I want to kind of reflect on the past year. I had a weird reaction last September, my first question to my Doctor after being diagnosed was if I had to change my diet. Of all the things I should have been worried about, I was afraid that I would have to change what food I eat or at least watch what food I eat. I was oddly relieved when he said that I did not really have to change my diet. That day it never really sank in the gravity of what I was just told, that came much later.
My treatment started with monthly phlebotomies depending upon my levels combined with an aspirin a day. Pretty quickly the fatigue settled in and we tried some iron for a month or two. I think maybe this may have been where my concern really started to kick in. Telling family was not a fun experience and I had to fight back tears while holding my daughter as well as fight my own demons in my mind. But back to the history. Unfortunately that raised my levels too much and the iron was discontinued. I was still suffering from some of the general symptoms of PV such as itching and sweating so it was later determined to start me on Jakafi. I have had one phlebotomy since starting Jakafi, and with Jakafi I am allowed to take an iron supplement to help with the iron deficiency as my levels stay pretty good. After the third month of decent levels, my monthly oncology visits got extended to every two months and there they still remain. I am on a daily medication routine. In the mornings I take Jakafi, and one tablet of iron, and in the evenings I take Jakafi along with low dose aspirin. Everything seems to be going well and my next appointment is later this month.
So what do I notice the most, even while being on medication and having decent counts? A few things really. I have good days and bad days when it comes to my energy level, along with good and bad days for my state of mind. Some days go by fast while others very slow. Some days seem easy to stay motivated while a lot of them are a fight. The biggest thing that I notice as far as a change in my body, is my ability to handle the heat. My god how the heat wears me down. I run farm equipment, I work on farm equipment. Being in the sun does not do well with me at all anymore. I try to start early mornings to get the most done. The heat kicks in about 11am and I fight it a few hours before it just feels like it is killing me, then I either give in and go inside or Alicia/Shaylee comes out and says it's time to come in. I am thankful for both of them, they help me watch myself because they know I am stubborn and will stay out until I feel like I am going to pass out, or actually pass out but thankfully so far that has not occurred.
Going back a little further before I was diagnosed. I knew what was coming, I knew I would be diagnosed with some form of cancer as I kept having appointments with oncology for tests. I knew that the majority of cancer medications do not want you to get pregnant or get someone pregnant while on them. That combined with not knowing what type of cancer or life expectancy I would have, I decided it was time to try for another child. I knew Alicia has wanted another child since our first was about two (ten years ago), and it was never the right time. All of the timing aligned very well this time, she had an OB appointment to replace her birth control and I told her not to, that we should try for another baby. She asked if I was sure and I said yes. The OB told her that she had to wait a few months to let her system get back to normal and then we could try. I was later diagnosed with PV, but we were pregnant before I started on any of the medications. We did not tell anyone until Christmas 2017 as a fun Christmas Present. I still have not told Alicia this but in my mind I made a decision, I wanted to be able to give her and Shaylee something I knew they really wanted if my outlook was bleak.
So where are we now since my last update? Our new baby girl was born at the end of July. We named her Rhylan. We joke around about her full name as her initials end up being RBC (red blood cell count) but really that was an odd coincidence. She is absolutely beautiful and Shaylee has been an awesome big sister. From the girl that said she would not change diapers before Rhylan came home to the girl that will do it anytime. Alicia has recovered just fine and is loving having another child in the house.
Shaylee also has been working very hard getting SurviveAll Bands prepped for the Apple Festival next weekend. She has been making bracelets like mad all to help with funding for MPN Cancers, our own medical cost and her college education. We even got a shout out from the MPN Research Foundation on Facebook, which was awesome and now she says she is famous. I am so proud of her in so many ways.
I keep working a full time job, working on the farm/equipment and started helping a pretty good sized start up get off the ground in my no so existent spare time. I stay busy but I like it that way.
While brief that sums up my year with an MPN. Happy Birthday dear MPN....
Other MPN Resources.
Denial, Anger. Bargaining, Sadness and Acceptance, My stages of grief realized.
Found this NCCN Guideline for MPNs today. I think it is a pretty good resource.
Today marked my monthly visit with oncology, Today we start a new journey in this fight.
ASU, Mayo Clinic and University of TX are looking for MPN Patients to participate in a new study using yoga
Welcome to the new MPN Journal site.
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