I haven’t been as diligent with this as I would have liked, but there’s always time to improve.
Last week, I was in Kansas City from Tuesday to Thursday afternoon with doctors appointments.
I saw palliative care again on Tuesday. They adjusted my pain medication and steroid dose again. I absolutely love the Palliative Care team. They do a really fantastic job at keeping me comfortable and listening to my aches and pains. I wish I had been in contact with them sooner but even through cancer I never really felt like I had a “serious illness.” If anyone else ever has cancer or a bone marrow transplant, I’d highly recommend you to visit with them. Even if it’s just for nausea.
My next appointment was with my therapist and I always really enjoy those visits. Cheyanna (who came with me on this adventure) even got to sit in with me. Apparently, she’s the perfect friend according to my therapist. She told me I should have some friends where “cancer talk” is off limits and I can try to be like a normal person again. Not to let the cancer define who I am as a person.
She also thinks I might be doing too much on the days that I am feeling good because I seem to crash the next to days afterwards. This is my new chart to try to follow. I need to take more rests throughout the days I’m feeling good in hopes that I don’t have so many crash days. Which is incredibly hard to do. Its hard to realize that the things that were so simple to me before now are more difficult and tiring. This is the handout explaining how I should be resting more often. Behavioral Pacing
Wednesday we had the day to ourselves. We got a little bit of a late start that morning. We had lunch at Kansas City Joe’s. Of course, Cheyanna had never been to Kansas City so I wanted to at least make sure she got to experience all the good food KC has to offer. Especially since they’re world famous for BBQ. We waited in line for a long time to get our food and after that I needed a rest. We went back to the hope lodge and took a nap (or at least I did, but I think she might have taken a short one too). Then we decided we would check out some thrift stores. I took her to Savers which is one of my favorites up there but that trip kinda tired me out too. Then we went to 5 below. I so badly wish we had one of these in Joplin. Maybe if I ever hit it big I’ll open one here in town because they’re just so awesome. We bought all kinds of new pretty lipsticks for like 2 dollars. Then we came back to the room. We watched a movie and eventually headed out for dinner at Chuys. My favorite mexican place up there.
We stayed up far too late playing with out new makeup and taking silly pictures of ourselves
The hair on my hairline is growing back quite nicely which you can somewhat tell from the picture, now if only the rest of my head would catch up.
Thursday I had an eye doctor appointment and they literally ran every test imaginable on me to make sure I didn’t have any graft vs host disease in my eyes. All my tests came back good except she thinks the surface of my eyes seems to be a little dry. She is going to have me put drops in my eyes three times daily. My vision has worsened which I kinda assumed that anyway. Last time I had my eyes checked I was -.5, this test I was -1.25 so new glasses or contacts will be in my future. She wants to actually wait a few weeks and redo the vision test just to make sure that it’s not the presdisone affecting my vision.
Then I had my regular oncologist appointment. They decided that I only need to see them monthly now, which is so nice. I’ll be due to get some shots soon since I have a brand new immune system, I have to be re-immunized. They said I should be able to return to work soon but they’re still trying to get my pain and rashes on my face under control. Then I can do some light office work. I worry about this, I don’t really feel like I’m in the position to go back to work yet, especially not for 40 hours a week but I guess we’ll see.
Today is my first day back to school. I’m taking four classes. US History, Psychology, Human Resource Management, and General Biology. I need 9 classes to graduate. I’m taking 4 this semester and then I’ll only have 5 more to go. I’ll finally have a bachelors degree in business management that I’ve been working towards for the last 8 years. I’m pretty excited to start back up classes again because I do actually enjoy them.
Anyway, I intend to catch up with you all much more frequently, but we’ll see what happens. Somedays I really don’t feel good, or I’m feeling extremely antisocial.