It’s been a while since I last posted just sort of an update, so I wanted to keep you guys up to date since people have been asking (y’all are so sweet!). For the most part I’ve felt really good the last few weeks. Tired and itchy! Really itchy, actually. But as my oncologist so charmingly put it, “of all the side effects you could get, the skin reaction is by far the least deadly!” Ummm, ok then! Last Tuesday I received my final chemo…until July. But yay! It still feels like somewhat of an achievement to have gotten through the initial four treatments (10mg/kg of ipilimumab or yervoy).
I have a buttload of other appointments though. Like, all the time. I’m not complaining, I’m actually quite grateful for modern medicine, as you can imagine, but it’s a bit ridiculous to have 3-4 appointments per week, some of those involving a 90 minute drive there. And it’s not like that’s all I’m doing, if it was it’d be easier to deal with, but this is just in addition to our already hectic lifestyle. Just when I thought May would be better…
And I actually still need to call and set up a cardiologist appointment for this month as well because last Friday I went to see my radiation oncologist (who is probably my favorite doctor so far, random sidenote) and he told me that when you get radiation to the head and neck it can damage your carotid artery so I will have to go to a cardiologist every 2 years for an ultrasound to check it out. In addition to my dermatologist, dentist, and radiation oncologist every three months, my neurosurgeon every year (remember that pesky little aneurysm??), my oncologist regularly (every 3 weeks at this point), and now an ENT every few months (I’ll get to that fun-ness in a second), and this is in addition to any tests and scans and whatnot I may need from any one of these doctors at any given point.
I never followed up with the plastic surgeon like I was supposed to after my surgery in November because truly literally, ain’t nobody got time for that! I’m going to physical therapy twice a week for an hour each time to manage my lymphedema (build up of lymph fluid in my face and neck, this will always be a problem for me) and for my shoulder strength. I’ve been going for three weeks now and hopefully only a few more weeks of it! I actually kinda enjoy my appointments, but it’s all a bit much with everything else going on. I’ve been going to the Ann B. Barshinger Cancer Center in Lancaster for physical therapy and lemme tell ya, that place is amazing. It’s really beautiful there, like I don’t think I’ve ever been in such a beautiful building. It even has a meditation garden for patients! Pretty cool.
So I think I am making progress with physical therapy and I’m learning ways to help with my lymphedema, which is great. I get my stitches out tomorrow (yay! 6 stitches on my butt cheek- gone! I can’t wait.) When I had something cut out two weeks ago, I was told it was a severely atypical dysplastic nevus. Of course it was!! Haha I can sure grow weird stuff on my skin! For those that don’t know, those are basically an atypical mole with capabilities of becoming melanoma. She said mine was pretty close. So my dermatologist had to dig in there and get it out, some internal stitches and then 6 external (scar is about an inch and a half long).
And today I went to an ENT locally,the same doctor actually that diagnosed my melanoma to begin with. So grateful for her and how she sent me straight to Penn! I must say though, they put me in the same exam room that I was in the very first time I saw her back in October before I knew any of this was anything more serious than just a few lumps. It brought everything back. It was only 6 months ago but it felt like a lifetime had passed and I truly felt like I was a different person sitting there. I got a little overwhelmed when it all came rushing back, but I was able to maintain my composure. I had to see her today because I’ve had really bad hearing loss in my right ear for the last month. If you’ve never experienced it, it’s a really helpless and frustrating feeling to have your hearing compromised. But turns out it was a simple fix! Here, radiation had damaged my ear canal and made the skin scaly and dry and wax has built up over the months and really caked in there. Gross, I know, but I’m so glad she dug it all out and that I can hear again! At least I didn’t take pics, I was tempted because she was getting soooo much out and I thought it was super cool. It wasn’t soft and sticky like normal ear wax, it was really dry and basically looked like she was pulling giant scabs out of my ear. It hurt quite a bit as it was all attached to my ear canal, pretty much exactly like scabs. So this is something I’ll get to do on a regular basis now. Oh joy.
I have a CAT scan next week of my head down to my pelvis to make sure the cancer that is in my bloodstream isn’t setting up shop in any organs. My insurance won’t approve a PET scan so recently after my last one (3 months) which is unfortunate in that those are the best way to detect if and where the cancer is spreading so I’m just praying that if anything is there that the CAT scan catches it so things can be dealt with sooner. I guess it makes more sense just to pray that the cancer hasn’t spread haha, either way!
So, how am I? Good. Busy, but good 🙂