Thursday 5-24-18 was my normal monthly checkup with my oncologist. I got a call on Tuesday from the receptionist stating that I would be seeing a different doctor due to my doctor having a family emergency. Not a big deal we just needed to look at my counts and ensure that I did not need a phlebotomy. Since I have been on an iron supplement we kind of expected to need one. This visit was both filled with exciting news and some slightly upsetting news.
So as always I go to the lab first in order to get a blood draw. Since my appointment was later in the day I was not at the hospital as early as normal, and the lobby for the lab was pretty full. Because my doc needs to know my levels for my appointment, my tests are always ordered STAT. I check in with the Lab sit down for about one minute, then get called back in front of all those people that have been sitting there for a while. On one hand it is kind of neat to be put to the front of the line, on the other you get a lot of dirty looks.
On to my the visit with the Doctor. Shortly after getting checked in for oncology. The nurse comes out and says that my doctor is actually there, and is seeing a few patients, so he will see me today instead of talking with another doc. Not long after that my doctor comes to get me in the lobby. As usual the first thing he does is check my blood levels which are really good again. He did not think that I needed a phlebotomy. I explain to him that I have been a bit sick with an upper respiratory infection. He asked me if it was getting better, what color the mucus was and all that. Since it was getting better he did not want to add any other medications. We talked a bit about itching, mainly he was inquiring if I still got it after the shower. Which I do to some degree still get red splotches and slight itching, but not like it was. So we debated about upping the dose of Jakafi to 15mg per day. Ultimately we decided to keep things as they are for now because the blood levels are doing so well.
After the discussion about levels he asked me to jump up on the table, take my shirt off so he can do a physical exam. He feels around for a minute, poking and prodding at lymph nodes and my stomach. He always kind of makes comments and grunts here and there when he is thinking which can be a little unnerving sometimes. But he finishes up tells me I can get dressed and says that he believes that my spleen is enlarged some. Nothing to worry about yet but we need to watch it.
I hop down off the table, back into the chair and we talk for a bit longer. Then he says something that absolutely made my day even though I have a new symptom of spleen enlargement. He says, "I think we are doing well enough that we can wait to see you for a full two months." The medication is working my levels are pretty stable. So instead of having to come in every month we are switching it to two months. I know it may not sound like much but it really made my day I feel like we are getting somewhere. He sets me up a refill of Jakafi and I was on my merry way.
After the appointment the family and I went to sonic for some food and to kind of celebrate. Our Sonic closed down in our town last year so it was nice to get a big ol'coney dog. After that we decided that we were going to go stop by a Babies R Us since Alicia is pregnant and they are closing down. Kind of sad about ToysRUs and BabiesRUs closing down but with a baby on the way the discounts and closeouts are a welcome site.
We look around the bare store shelves, not much left now. We pick up some changing table sheets a few small things then notice that they are selling off the shelves and fixtures. As some of you know my daughter started a business selling bracelets to help us with some personal medical funding (cord blood and tissue banking for stem cells), raise awareness and funding on MPNs as well as funding for her college. She is set up online and we are working on expanding her offerings. If you would like to take a look, please check out www.SurviveAll.band .
Anyway, we have booked a booth at our local Apple Festival, this September to try to sell some and are looking at some other festivals and craft shows to sell at. We notice that at this point the sign says that all fixtures are 50% off. We get to looking at some rolling racks with peg hooks and decide to buy two of them with a bunch of pegs and some shelves. A whole $120 later we were on our way home with two new rolling shelves of a decent size. Shaylee is excited now because she will look professional at the Apple Festival and after setting up the racks in our living room, it seems to have given her some new motivation and organization of her plans. She has a visual and plan for getting ready now.
So there is our updates for this month. I have a slightly enlarged spleen, I get to wait for two months to see the doctor again, the new baby is doing good, Shaylee is running with her business, farming has been put off so I get some much needed rest and for the most part all is well. Thanks for reading and even though I don't have an appointment next month I will still try to make some 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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