As you all know last week I received my first week of round 1 of chemotherapy - Carboplatin & Gemzar. It was a pretty easy chemo. 1st day after I was fine probably because of the IV Steroids I had to get. Thursday I was tired and wanted to nap. Friday felt like I had a mild flu - cold, body aches, and slow to move. Saturday, I was all better, but still needed more rest than usual. Nothing too bad and nothing I cannot tolerate with balancing rest, walking, and living my life.
Last Friday, I got the solid plan for my Steriotatic Radiosurgery Treatments. 5 sessions of SBRT (just means more than 1 SRS using the same machine) to the incision line of my surgery site and they are using SRS treatments using something called TruBeam SRS (not cyberknife like I was assuming) on the small spots, a little each day.
In addition to having 5 radiation sessions tacked between chemotherapy, I had to be put on 8mg of steroids daily, but they made sure they worked to help combat some of the anxiety and hyperactivity that occurs from me and Dexamethasone. The plan using the steroids with a calming agent has kinda helped, I am sleeping and not shaking. Steroids are also good so my brain doesn't swell and I don't die or something bad from radiation. So I am ok being on these steroids. I am just loosing weight on Steroids and trying to maintain weight on a known weight gainer is odd. I am also getting a lot done, talking too much, and seriously enjoying Christmas shopping too much. Welcome back hypomania, you are not fun. I am also very thirsty.... which could be the medications I get orally, the radiation to my brain or chemotherapy.
I had two radiation sessions. The first went quick and easy and took 40min max...easy right? The second was hard, we were doing more spots than my first session. I was able to get through 95% of the session and eventually my head couldn't remain still for the radiation anymore, I was in the head cage for 1.5hrs at that point. Doctor came in and explained it would be worse to force me for prescion of the radiation. So we are taking that extra 5% I couldn't sustain to Friday. Apparently people tend to miss more than 5% more often at each session and they tack them onto other days. Its no big deal and better to be still as possible so radiation can be EXACT.
So 3 more radiation sessions left and no chemotherapy next week.
WHAT TO COME??
I am still waiting on an appointment to get a Passport (port under the top of my arm in my armpit region) done. Why a port? I never got one ever and had so many chemotherapies and infusions etc, that my right arm (we cannot use the left because it has lymphedema) has very little good veins to use anymore to place a line for treatment. Not good... so waiting on that.
We sent off my brain tumor to prescion medicine to get the genes checked out. We will continue two weeks on with both Carboplatin/Gemzar as long as it kicks my cancer's butt. I am going to be seriously immunosuppressed on these medications. If you are sick or have been near things that can spread germs, just be conscious that I do not want to be sick and cannot get sick. I know people wanna visit, but coming to see me sick is not what I need now. I also cannot be in large crowds and I get tired easy... so there goes dragging me to some concerts and bars for a bit. I never usually go to those things, but just saying. I am kinda not gonna run around crazy and end up sick or hurt (been there do not wanna go there again).
Still in the wings with the trial. Ultimately goal is to have chemo get my markers dropping and start talking to Sloan about enrolling me in the trial. I will need a stable brain MRI 4mo post radiation and be off of chemotherapy for 2 weeks. So the timing is odd, I am leaving that up to my oncologist and will continue to talk over with her.
Kyle is back at work. I am home being a slave to medical doctors and running around on steroids cleaning, decorating and begging people to take me out of my house!!! please!!! steal me!!! I cannot drive until the 26th!!! please soon!!!
If you feel inclined to help us financially there are a few ways:
1. share my GoFundMe
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do
No comments:
Post a Comment