First thing is first I would like to apologize for the radio silence. I keep starting a post and not finishing it. This holiday season has been really busy with ups and downs, and all kinds of stuff to talk about.
So my last post was in Early November, and a lot has occurred since then. I took a week off of work around Thanksgiving which was nice, got a few things done since the sun falls out of the sky so early in the winter. Worked on some tractor stuff, my mother came to visit for Turkey Day, I took on a project that "required" me to get a 3D Printer. So November got pretty busy real fast.
I also didn't really do an update for November as far as my MPN because well there was not a lot to say. My doctor was out so I just went in for a quick blood test in order to check my hematocrit levels and determine if I needed a phlebotomy. I had to get another pint drawn off to level things out so no real big deal. December my doc was back and trying to catch up so I didn't even get to see him, I went in got my blood drawn, waited for a bit, the nurse came out and said "You don't need a phlebotomy this month, but stop taking the iron pills" and that was that. We scheduled the next visit for January and I was on my merry way.
Now the rest of the holiday season was pretty chaotic and tiring. I found it hard to get into the Christmas spirit this year but I did my best. Shortly after Thanksgiving we got some news and we made the decision to keep it from everyone, not tell a soul, including our daughter at least for a while. Keeping that all bottled up was pretty difficult. On Christmas morning we let the cat out of the bag with one of our daughter's presents being a couple shirts and some very specific toys. One of her shirts said "I can't keep calm I am going to be a big sister" and the other said "Awesome Daughters grow up to become big sisters." That is correct, we are expecting a new baby. It took my daughter a little bit to figure out what that really meant because her dance has a "big & little sister" program and at first she thought it was about that. This was actually pretty planned, we decided to come off of birth control a few months before and try for another, being my daughter is almost 12.
The girls are very excited for the new arrival, setting up baby registries, picking stuff out and all that jazz. I joke a lot about timing it so we had a live in baby sitter (my daughter). I am excited as well and looking forward to having a baby in the house, although a bit worried because of what is going on with my health. I can only do the best I can and put my best foot forward.
Today was my monthly visit to oncology. My levels were off again, my platelets and hematocrit were the highest they have been yet, so a phlebotomy is what we did. Before being set out the doc was looking into some other treatment options since iron is pretty out of the question. I wish I had wrote down the two names he said but he was actually talking about starting me on some chemo drugs. He said the name of one and then said that the problem with that one was that it was locked down. That you had to try this other drug first and if that didn't work you could move on to this one. But the one you have to try first is pretty heavy and thought that was a bit drastic for where I am. So he just decided to keep doing what we are doing, keep taking the aspiring, keep coming in once a month for blood draws and phlebotomy and we will see how it progresses from there.
My thoughts on that situation, Chemo scares the ever loving crap out of me. I've known and been close to people that have gone through Chemo treatments. I've seen what it does, now I am not well versed on the different kinds of chemotherapy and the side effects but just the word strikes fear into me. I use to tell one person that I knew going through it that they were much stronger than me as a person, that I could not do it. I don't know, I suppose if the time comes that I need it things might be different. I need to find out what he was talking about and learn more about it. I was alone in there this time so I didn't take notes, I wish I had. Oh and to top it off there was someone in there with a little mobile booth, talking about "planning" which was basically end of life planning, you know setting up living wills, advanced directives and all that. While I was in the back with the Doc, the lady approached Alicia so when I come out I was handed this booklet. At first it was kind of upsetting and my first thought was "I am 35, don't want and am not ready to plan my death yet." However I do understand that is not all there is to it and told Alicia that we will look at it later.
So that is where we are currently, still only taking aspirin and throwing blood away for now, getting ready for Farm season, 3D printing and awaiting our new arrival. Thanks for reading and again sorry for the delay in updates.
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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