A lot has happened since my last post, so I'm going to do my best to sum things up instead of draw them out.
My port was placed in my chest (not my leg) without incident. It's been working great and seems to bother me slightly less than my previous ports.
We started the immunotherapy and it seemed like it was working unbelievably well. I didn't have many side effects at first. I developed a spotty, itchy rash on my legs, but it was manageable. Historically, my SED rate (which is a measure of inflammation) has been a good indicator of how bad my cancer is, with a higher SED rate equaling worse cancer news. After one immunotherapy treatment my SED went from being in the 90s to 17!
We were shocked by just how well everything seemed to be going. My cough subsided and I had an energy boost. Things I just couldn't manage before were possible again. I carried laundry up the stairs. I was doing multiple activities each day. I felt so much better.
But slowly things started to get worse again. My cough gradually came back. My heart started racing again at the tiniest activity. I began to feel exhausted after doing nothing at all. My SED rate has continued to go down, clocking in at 11 the last time we measured it. But I have been feeling worse and worse.
On Friday (10/16) I was supposed to have a treatment, but Dr. Essell decided my side effect symptoms were serious enough to hold off on the treatment. I had a PET scan last week and got the results today. The scan reports "satisfactory treatment response." There are still some places lighting up in my lungs, but that *could* be due to something else going on. there's definitely some pleural thickening, which is bad and a few other keywords that don't sound great. So it was a good scan, but not a great scan. But I'll take good. At least the immunotherapy worked somewhat.
But now I'm having a host of other issues. I had an EKG today before my appointment with Dr. Essell. He again decided to hold off on doing another treatment today until we can get some more information about what's going on with my side effects. (Or, if not side effects, other issues). After seeing him I went for an echocardiogram, so lots of heart stuff today.
I've also been bleeding and bruising very easily. Today my CBC (basic blood test) showed that my platelets (the things that make your blood clot) are only 19. Normal range is 182-369. Nineteen is way too low. So we have to figure that out too.
Finally, as if all this wasn't enough, my dry mouth has gotten far, far worse. I used to have dry mouth to the point that it irritated my gums and made it tough to swallow some pills. I have an oral prescription that helps some, but the dry mouth wasn't previously a major hurdle. Now I can't swallow food, which is a much bigger problem. We've gotten some over the counter products that help with the dry mouth when I'm not eating. But with food? We've had to do some creative shopping that has me eating soft/soupy foods like cottage cheese, mashed potatoes, and soup. Also, pudding and applesauce. I'm losing weight though, and no one is happy about that.
Overall though I'm just exhausted and frustrated. I can't hardly do anything around the house, leaving poor Alan to work 40 hour weeks AND to then have to take care of me AND the house. I can sit around and crochet, but I don't even always feel up to doing that. I just want to have a little bit of energy!
We are still continuing to isolate. We haven't eaten out or gotten take out since the end of February. I'm able to work my 12 hours per week from home, which is such a life saver. Alan still has to go to work and I still have to go to the doctor, but we take all possible precautions when we have to be out. We've been having our groceries delivered for months now. I do miss going out places and (especially) thrift shopping, but I'd rather be safe. I hope you'll all continue to stay as safe as possible too!
