I did receive some good news recently – another clear PET scan! I’m thrilled and my oncologist even thinks it’s ok now to do brain MRI’s just every 6 months instead of 3 which is really cool. I never thought I’d get to a point where my scans would become farther apart. I mean, I was always thrilled for my friends who got to do that but I never thought I’d see the day. And I’m glad I am. So in August I’ll get another PET scan and a brain MRI at that point.
And I don’t care if this sounds cheesy, but I would be absolutely crazy not to thank all of those who have been praying for me and my family and who have been so amazing and supportive. I covet every prayer and have taken to heart every message and comment on here with deep appreciation. You guys have been amazing through all of this and although my thanks is all I can give, I do give it sincerely and with a heart that stays humbled by the fact that I don’t deserve all of this. Thanks guys ❤
So just for the sake of keeping you amazing peeps updated, I’ve not only had the pleasure of getting my brain MRI’s spaced out a good bit, I’ve also been doing something else I never thought I’d be around to do: maintenance rechecks.
I know, glamorous life, right? Yup, be jealous! Joking of course, but the truth is it was almost exactly two years ago now when I was pushed to stage 4 with the discovery of my brain tumor and other spots of metastasis, and at that point I was having regular rechecks with almost 10 doctors. When things started to look grim, the only logical decision was to simply stick with my oncologist for the big “cancery” stuff and let the rest be. I mean, was it really necessary to keep having rechecks with my neurologist, radiation oncologist, surgeons, and everyone else? No, it really wasn’t.
But now, I’m, well, still here. And things need upkeep so I am starting up seeing a few more doctors again, but it’s not bad. I’ve seen my dermatologist continually every three months through all of this and my most recent visit showed another severely atypical mole biopsied that now needs a wider excision (no biggie, I get at least one of these taken out at every single appointment. Then I get to go back and get the chunk removed and get stitches and then a few weeks later get the stitches removed).
I also have been better at seeing my dentist. Didn’t seem so important when death seemed imminent, but now since having radiation to my head and neck can cause major dental and jaw problems, it’s imperative that I keep up with that. (Sidenote: after head and neck radiation you’re supposed to see your dentist every 3 months forever. But that’s expensive, so I’ll stick with every 6 months for as long as I can get away with it.)
Last but not least today I got to see my Ear, Nose, and Throat specialist. I have a huge soft spot in my heart for her for many reasons, not only does she know her stuff, she was the one who diagnosed me and insisted I go to Penn. I wouldn’t have known where to go and if she had told me to go to a local hospital I would have. And I’m just beyond grateful that she got me to go to Penn as there I have not only had access to the best doctors in the world, but I also got into clinical trials that otherwise would not have been available to me.
So anyway, she confirmed what I already knew, I’m losing my hearing in my right ear as a side effect of radiation. Also the inside of my right ear is perpetually dry and raw and painful. Small price to pay, in my opinion.
So these are the things I’ve been up to in case you were wondering lol! I’m seeing now that these mental and emotional highs and lows are going to stick around and that these maintenance appointments that seemed so silly and pointless just 2 years ago are really important for me to keep up with. I didn’t think existing this far past my expiration date was a possibility, but now that it is not only a possibility but my actual reality, I’m trying to figure life out again. Trying to figure my relationship with God out again. Trying to figure out where I fit in in the Kingdom again. Trying to discern where the Spirit wants me.
It’s confusing and wonderful, frustrating and beautiful. And I’m so happy to be here for it.