the new normal

We’ve been home a week now, and I’m finally starting to feel like my head’s clearing a bit and I’m gaining some of my strength back. My brain actually settled down enough that I could start a book. I hadn’t read a book since before surgery, which is very unlike me, and made me feel a bit lost, honestly.

Better still, the smoke that has plagued the Seattle-area skies for the week we’ve been home (and then some) has finally dissipated, meaning the air is no longer unhealthy to breathe and we could finally open the windows this morning. I can hear the faint sound of traffic outside, but louder than that, the pitter-patter of rogue raindrops dripping from the eaves of the porch, a squirrel screeching at something and (so far), the following birds: chickadees, juncos, flickers, and a very angry Stellar’s jay.

It’s a nice moment of calm after a busy week of figuring out our routine in between doctor visits, before ANOTHER busy week of even more visits. It turns out that having cancer means visiting one or several doctors every other day. For someone who has always hated going to the doctor, it feels a bit like torture.

Most of these appointments are follow ups from surgery, as well as preparation for radiation and chemo, which will likely start in the next couple of weeks. Most are relatively quick and painless, but I’d still just…rather not? If I could? It’s honestly making me miss being in the hospital a bit. At least there, the doctors all come to see you. Sure, you never knew when, and the majority of mine visited during 6am rounds, but it made things a lot easier.

Aside from my primary surgeon, there were numerous others on her team who would normally do the daily visits (in other words: my surgeon was Bailey, the doctors who came to see me were Meredith, Cristina, Izzy, and George…except, like, these doctors were all good at their jobs). On our way out of the hospital on Monday, where we’d just had an appointment, we actually bumped into two of them in the hallway. They’d both just been to Starbucks, and it was strange to see them out of their natural environment, but it was almost like seeing two friends again (even though I’m pretty sure one of them was the one who tortured me when they changed me to a smaller trach).

The appointment we’d just been to was with two medical oncologists, one who specializes in chemotherapy and the other in radiation. It turns out I’ll be needing both.

I’ll be honest…when they told me at the beginning of all this that there may be a slim chance I wouldn’t need either chemo or radiation, I really grabbed on to that (optimistic to a fault). When we got the pathology results and they said they got everything with clean margins, again, I thought, “well, great, we’re done, right?”

Unfortunately, since the cancer was behaving so aggressively, and it’s been shown in the past that doing surgery alone almost certainly means a likely future recurrence, radiation and chemo are the best bet. Luckily, I only have to do three rounds of chemo, so they aren’t anticipating any huge negative side effects from that.

The radiation will be a bit more hardcore. Six weeks of it, to be precise, at five days a week, where they will strap me down and blast my mouth and neck regions with radiation so I’ll hopefully be rid of any cancer cells that may still be hiding and waiting to pop out. The radiation sessions are fairly quick - about 30 minutes each day. The side effects won’t be much fun…potentially these include painful mouth sores, loss of taste, extreme dry mouth, and a sunburn-like burn on the side of my neck where the radiation will hit. The worst of these effects apparently hit after radiation ends, so the month after will likely be spent recovering from this life-saving treatment.

But it’s OK. I mean, it’s not. I’d really rather not have to do it. But I do, and it’s not the first thing lately that I’ve done even though I really didn’t want to. I didn’t want to have cancer, but I did. I didn’t want to have surgery, but I did. I didn’t want a trach, but I have it and I’m dealing with it. I didn’t want a feeding tube, but it’s there and it’s ensuring I’m strong enough to get through the rest of this. I didn’t and don’t want to go to 8 million different medical appointments, but they’re necessary so I’m doing it. So this? Radiation and chemo? This is just the next thing I have to get through.