Maintaining Status Quo

Good evening everybody! Today has been a day of keeping things where they are at. Last night, I had two minor flares, but they both responded to IV Benadryl. However, because I was still having the swelling, we decided to keep the IV steroids going for an extra 24 hours to err on the side of caution. In theory, I shouldn't still be having rebounds, but we all know that my mast cells don't like to take a break. Additionally, we increased my Gleevec (oral chemo) dose, to see if that may help. I was a little surprised to see that I was noticing some side effects today, but they are still very minimal in comparison to any standard chemotherapy regimen-- just some bone pain and additional fatigue. If the increase will have a positive impact, I *think* it may take a week or two. Physically, I am not the most comfortable, as I still have burning/flushing/itching of my skin, in addition to the bone pain and feeling of fullness, but it is unfortunately all part of the mast cells wreaking havoc everywhere. The medications help, but I am still far from symptom free.

Therefore, everything is kind of a waiting game at this point. If things go well tonight, the plan is to switch me to oral steroids, wait 24 hours, then switch to oral benadryl, and wait 24 hours. Assuming all goes well, that gets me discharged on Friday. Fingers crossed that my body can handle the steroid taper better this time. I am so ready to go home!!

When I get home, I'm pretty sure I am going to sleep for a solid two weeks :P Although I certainly am much more comfortable on the telemetry unit, it still is the hospital, so noise is constant. Fortunately, I have a private room due to my immunodeficiency and being on any form of chemo. Regardless, it isn't easy to sleep with all the beeping and wires attached. Although I could theoretically nap during the day, there are always people coming in and out for one reason or another. Now that the nurses here are getting a better understanding of my med routine, they are trying to combine visits where they have to wake me up so I can get some additional rest.

Today to keep myself busy, Beth, my step mom came to visit in the morning, and we played Finding Dory uno-- you are never too old for Disney, especially Finding Dory! Afterwards, I tutored and did some reading for my online class. Today there were two nice surprises-- one was the therapy dog visit. A Portuguese Water Dog named Mulan came and visited me for 20 minutes or so, and I was having some swelling before hand, so it was nice to have a furry friend to sit with. Shortly thereafter, volunteers came in with a beautiful bouquet of flowers, something they supposedly to every few days to cheer patients up. It appears the organization doing it is called Random Acts of Flowers-- super cute idea. I attached a photo of the flowers. Great way to brighten up the rom, and a pleasant surprise.

Although it SUCKS that things have to move this slowly, I know that if I don't let my body have the time to calm down, I will just end up right back here in worse shape. The steroids suck side effect wise, but that and high doses of IV Benadryl seem to be the magic combination. The problem is that high dose steroids are not sustainable, and wreak havoc on the body. That is where we are hoping the Gleevec will come in and help bridge the gap. The Gleevec still had kept me out of the hospital for the longest time in a while, so I am really hoping that this increase does the trick, and that the steroid reduction goes off without any "speed bumps."

I am incredibly thankful for all of your support, and the doctor and nurses taking care of me. I stand out here like a sore thumb, I am at least 20+ years younger than anybody else here, and when the steroids are doing their job, I look relatively healthy, other than half of a swollen face (yes, it is really bizarre, the right half of my face is almost constantly swollen while the left side comes and goes). I wear my own clothes to try to feel semi human. They all have been working really hard to get me to STOP working (which I really need to get better at doing), to sleep, and to eat. Those are all part of the goals of the next couple days while I am stuck here. I am going to try to force myself to get off the computer tutoring and doing school work a little bit more, and instead do my sticker book, sudoku book, rug hooking, or a novel for a movie coming out soon (yes, it is the book about a girl who is allergic to the world, but don't be deceived- it is NOT about Mast Cell, and the movie actually is about her mother's Munchausen by Proxy). I am also incredibly thankful for all of the individuals who I have met online who also have MCAS. I talk with people who have severity levels more advanced and also more mild than mine, and it helps to know that I am not the only one going through this type of experience. For those with more severe cases, I fear that I will progress to that point, but I know that the earlier that we can get things under better control, the less of a likelihood that things will progress to that point.

So, for tomorrow, all of my fingers and toes are crossed that my body starts hating the steroids as much as I do, and is ready to come down in dosage. I will continue to keep you all posted.