As usual I went to my bi monthly doctor visit this last month and we discover many more changes.
We dropped Shaylee off at the bus then began our hour and half trip to the doctor, that is the only drawback to living in the sticks. Everything is so far away. But it is not a horrible drive, its a pretty view almost the entire way. When we hit the mountain I noticed that it was snowing a bit. I just hoped that it was not going to stick as I did not want to drive down that mountain in the snow.
Anyway, we get to the hospital, Alicia and the baby stay outside for their safety and that of the people there. They drop me off at the door and I continue in to go get my labs. I get to the lab tech and the draw one little vial of blood. I then go to oncology and wait for my visit with the Nurse Practitioner. I have to say that overall I like this one.
Meeting with the doc
So we talk a little bit as she is waiting for the rest of my blood tests to come in. Just simple talk, how am I feeling, how is the rash on my face, that kind of stuff. She keeps checking the computer for my result and ultimately sends a message to the lab asking what is going on. Well remember I mentioned that they only took one vial of blood? I knew something was off, they did not take enough blood. I had to go back to the lab to get stuck again. We talked a bit more and she sent me back to the lab.
I finish up at the lab… again and return to oncology. Apparently they did not do the second order properly as a STAT test so the NP said I could go ahead and leave and she would call me with the results of my blood test.
Alicia and Rhylan come back to pick me up and we head towards home. We had to pick up Shaylee and take her to her sports medicine doctor. After that we take her back to Track Practice. Since we were in town we decided to run some errands around town. We stop at the big blue store and as we are walking to the door, the phone rings.
More changes with the Call
It is the NP calling, she seems a bit anxious as her tone is completely different from our conversation earlier. She starts off by saying that she thinks we need to raise the dosage of the Jakafi. Apparently my Platelets are rising again. After discussing with the oncologist they agreed that would be the best course of action because they are worried about clotting. We then started to talk about side affects of low platelets, to watch for blood blisters in the mouth and on the lips.
She also mentioned that some of my other results of the CBC are showing a weakened immune system. So I need to watch for infection and illness.
She advised me to up my dosage of Jakafi from 10mg twice daily to 15mg twice daily. Since my pills are 20mg I asked if it would be ok to take an entire pill in the morning and half at night. This would give me 30mg in a day and not have to waste extremely expensive medication. She was ok with that but said she would update my prescription to reflect the change.
Continuing my day
The first thing out of my mouth when I got off the phone was a particular four letter word that I wont repeat here. Alicia asked what was going on and I told here they have to increase my medication and that we would talk about it later.
We traverse through big blue box store and then pickup Shaylee from track practice and take her to dance. After dropping her off we head home.
Maintaining our busy day and since more changes occurred I decided it was time to rebuild the site. I spent the rest of the evening working on rebuilding the site. Alicia had to leave to go pick up Shaylee and returned home.
Bed time came a little later than it really should have as it tends to while I work on things. Shaylee went to bed, followed by Alicia and I went a while after. When I went into the room Alicia was still awake and I asked her to pause the movie she was watching. I went into more detail with her about what the NP had said on the phone.
I detailed why I have the change the medication. And that my immune system is not doing so great. We talked about the future and planning. Not that I think I am going to die soon but we need to be more active in planning if something were to go wrong. Alicia has been a stay at home mom for over 8 years. I am the sole provider for our family and we need to look at the possibilities and plan accordingly. A discussion came up about her starting to look for a career. That we should work on paying things down.
I broke a little bit during the conversation. That is a really hard topic to talk about. Again it was not a morbid discussion and I am not in any immediate danger. I just think too much sometimes. Ultimately we decided to wait for her to go back to work when Rhylan is old enough to go to school. As much as we would like to home school her until high school like we did Shaylee. It just may not be in the cards.