It's been a relatively quiet week, which is good, because chemotherapy starts Monday. We just found out today. Even though we knew it was coming soon, having it definitively scheduled to start in five days suddenly makes it real...if that makes any sense. It's suddenly mentally and emotionally real.
The first week is not supposed to be that bad, but I suppose we'll see. I planned on not cutting my hair or shaving my beard until the first signs of it beginning to fall out happened, and now that time is upon us. From what I understand, that begins to happen as early as the first or second week of treatment. I've had long hair for so long, that to pivot the complete opposite is going to be jarring, and strange. I don't want to just let it fall out because it'll be patchy and clumpy and apparently it can be painful for it to fall out - and the longer it is, the more painful.
Our visit to Johns Hopkins was good, outside of the maddening wait and upheaval of our plans. We were originally scheduled for 4:30 and so we booked a hotel in Baltimore since it's a little over a three hour drive and it'd likely be 5:30 by the time we were leaving. Neither of us relish driving at night now, but for Jess it's really hard for her to see. And the mountain roads of West Virginia are not for the faint of heart. Then we got a call that we could be there as early as 2:30. We figured we'd get there, be out by 3:30, and drive home while it was still daylight. So...we didn't pack bags. We got there at 2:00 (actually, before 2:00) and waited...and waited...and waited...until 4:30! And when the doctor came in, he was trailed by a pack of interns like you see on television! In the end, we had to drive home at night. Grrr.
Despite the frustration, it was worth it. The Johns Hopkins doctor confirmed that the Virginia doctors were doing the initial treatments as he would, and that the levels of radiation they'd chosen was an inclination that they were going into this with the mindset that I'd get back to being a surgical candidate. He also gave us some good advice, and several things to think about, concerning the surgery. The door is open for us to have the eventual surgery at Johns Hopkins if we wish. In the meantime, I can do my radiation and chemotherapy treatments at Shenandoah Oncology (everyone there has been fantastic). And when it comes time for surgery, we can decide then.
So, that's where things stand right now. Chemotherapy begins Monday morning and radiation gets set up that same afternoon, with treatments set to begin either that week as well, or the following. In the meantime, I am keeping up with my tube feeds (which we are pros at now) and trying to get more "on my feet time" - Jess and I did some walking these past couple of days and my legs are sore jellyfish right now, lol.
More soon!
Jess has been adding more details and insights in her journal entries on Caring Bridge. You can read them here, including the latest (today's) that gets a bit more into some of the details surrounding the surgery: https://www.caringbridge.org/visit/joemcgee13/journal/view/id/63f695a66ed8c09645ff917e
- j