It's time for another update although I have not had another doctor's appointment since my last update. If you have been following my doc moved my appointments out to two months as my levels had been good since starting Jakafi 10mg twice a day along with 325mg of iron in the morning and a baby aspirin in the evening. Towards the end of this month is my next appointment and I will make an update post after that.
So, what is new? A few new things I have noticed lately, I am not sleeping worth a darn. I think I get too hot. If my fan is not on I can't sleep at all. Alicia says even when I appear to be sleeping I am tossing, turning and mumbling so yeah not sleeping well. Last night our power went out at about 2am, it didn't come back on until 6am this morning, no fan, no ac, no sleep. I laid there pretty much until the power came on then got another couple hours when my fan turned on. Another thing I have noticed is on occasion, just sitting at my desk, usually in the evening I get what only can be described as hot flashes. All of a sudden I get very hot & start sweating profusely. After a few minutes it goes away and everything is fine again. Going to have to ask the doc about that one.
I have tried to be very mindful of the next thing that I have noticed. It seems that my fuse has gotten a bit short lately. I have popped on a coworker twice and before even with the most difficult customers I have been able to keep my cool, lately I have extra effort in order to not pop on a difficult customer. Maybe it is a combination of things causing this. I have asked some others on a group if they have noticed a change on Jakafi, some say yes but it is really not listed on the drug interactions. I think it might just be a combination of stress (new baby, finances, MPN), worrying, and lack of sleep. I am aware of it though so I am watching it carefully.
On to the lighter side of things. We have a tentative date on the new baby being July 30th. We still dont have a name picked out but we are working on it. Also we got accepted into the Newborn Possibilities Program with CBR. Basically what that means is that we get to store the cord blood and stem cells from the new baby for a period of 5 years without cost since I have PV. We don't have to pay the setup fees and all that. Then after the 5 years we just have to pay the yearly fee. From their website they state. " Free banking: Families with a qualifying medical need will receive free cord blood processing and five years of storage for cord blood and cord tissue. 6,000+ patients identified and counting. "
We decided we wanted to store stem cells since MPNs are known to change over time and we of course are in a unique position to do so with the new baby. We have been trying to figure out how to do this as the cost can range anywhere from about $3000 to $15000 which we could not afford. Thanks to the CBR newborn possibilities program we can at least store the cord blood and cord tissue. Here is a link to the CBR Newborn Possibilities Program if you want to check it out. Additionally here is a referral URL if you want some information and it helps us with future fees if you sign up through this URL: https://www.cordblood.com/landing/referral?contactid=1-29LHJO1 . I have also attached some pictures of the package that they sent us.
Until next time.
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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