Shaved my head today

It’s kind of weird having this 15 year old blog, but it’s also kind of cool because I can look back and see how things went then. Like, the first time, my port was pulled 8 weeks after chemo. We haven’t even talked about it this time (I’m at 6 weeks). So I had to have it flushed last week, and I’ll be doing that every 6 weeks for the foreseeable future.

The other interesting thing is a picture in the Feb 2005 posts. Me with a fuzzy head. I buzzed it again today. So it’ll grow back even. Ugh. Anyway, I read on into March and found a gem telling people to please NOT comment on my hair. It’s so me, don’t draw attention to anything please. Do not make a big deal. I’m fine with people knowing, it’s not that I’m a private person (see also public blog, public twitter). I just do not was people to treat me any different, and that includes comments that people think make me feel better. I’ve never taken complements well.  So yeah, I’m bald. It sucks. I would rather you pretend you didn’t notice that to fawn all over it.

This is all the hair I had left when I buzzed it.

Radiation date set

We know how much I like waiting, but it’s another two week wait. November 11 I’ll start proton radiation. I spent about 4 hours there this morning getting set up. This beautiful thing is my mask, to keep my head from moving. The contraption on top is to measure my breathing, so they only zap me when my lungs are full, which pushes things out of the way. The glasses show a computer screen for a bit of biofeedback so I know I have inhaled enough. It’s very fancy. 

My understanding is it’s a bit easier than chemo, but not a cake walk. Essentially microwaving you. What I hear is radiation burns on the outside and inside are pretty common. And one radiation oncologist said, for reasons no one knows, Hodgkins patients often get it worse. Joy. 

Another expected side effect is fatigue. Which is already bad. I’m just so tired all. the. time. But I’m not sleeping well either. Could be related? I don’t sleep, but I’m so tired.

Proton

Insurance approved proton radiation!! I think this was because I did the homework beforehand, and knew the boxes I had to check for approval. I looked up the preapproval requirements, and saw that they would be amenable to it for mediastinal disease if, and only if, I was in a clinical trial or patient registry. So I signed the consent forms, and I’m now in NCI NCT01255748 patient registry for radiation follow up. Apparently, they will pull my medical records every now and then for the next 20 years and see what has turned up. Yay data!! I get to be a data point after all.

Timing is still TDB. I’ve been tentatively planning for next week, after my semi-annual trip to Philly. But when I talked to them today, it seemed it could be up to another 2 weeks. Oh well. It’s coming. 3 more weeks of shit. And then hopefully I can be done forever!

Radiation

Had a consult at the proton center today. It’s affiliated with the local med school, so it started with a visit with the resident. Fun interactions like:
Resident: Your cancer is considered curable - Me: Careful there. They told me that 15 years ago. Resident: *gulp* well yeah, it is pretty rare to come back at this interval Me: Rates between 1 and 13.6% in the literature...

That and we had the discussion about my age. It wasn’t the same as with my oncologist, who says I’ll alway be young bc I’m a few years younger than him. But, we decided not being young was a benefit in this case, bc the late effects of radiation are worse in women younger than 35, and especially under 24.

So anyway, they are going to try to get proton radiation approved through insurance. It’s a crap shoot, but the doctor seems to think it should go, based on what he knows of BCBS. I had the approval guidelines printed out, and we went over them. I also had to sign up for a patient registry, which is listed as a clinical trial. That was also one of the insurance check boxes. So now I’m guaranteed to be a data point in someone’s study. Hopefully in the good outcome group.

The good news is I feel much better about tradition (photo) radiation if the proton thing doesn’t pan out. They confirmed it much further above my heart than I though. It’s also near my thyroid, so that’ll probably blow in a few years. And my esophagus may or may not be impacted. So I may not get my ice cream diet after all. But I also get to add esophageal cancer to my potential late effects. Woo.


But the other option is doing a stem cell transplant as consolidation. Which is much worst short term. A year off work, 2 months in a small hospital room, 100 days confined to the house. Immune system pretty much fucked for good. And that’s not even the physical toil it takes. And the puking! Ive made it through 10 rounds of chemo without ever puking!