Next steps

So, the radiologist did an addendum to the August PET scan, and it confirms my “complete response” read on it. “Complete metabolic response.” Deauville score of 2, for those that know what that means. Dr K told me to come back in 3 month. Which is weird. I’ve been in his office every 3 weeks, plus countless emails, for the past 6 month.

I went back to radiation oncology this morning to discuss the fact I feel like I’m signing my own death warrant. Apparently, if you say that to a doctor, they really get how freaked out you are. So we had a really good discussion and she is sending me up to the proton radiation facility for a consult. What I got out of the appointment is that they will minimize radiation and that it should miss my heart, but proton might offer slightly less radiation in a more targeted manner. However, there is nothing to  say it will be better. And hodgkins needs a lot less radiation than, say, prostate cancer. When she was listing the down sides, her list included things like “it’s all the way downtown” and “treatment windows are about twice as long.” So 30 minutes a day vs 15 mins of treatment, and about the same difference in drive time. Not a huge downside if it’s less likely to kill me.

My insurance is likely to throw a fit about proton radiation. Once again, I’m not listed as something in their approval criteria. However, I think I found a loop hole, if I sign up for a clinical trial or patient registry, they will pay. And the proton center has a patient registry listed as a clinal trial. So maybe that will work.

I know, I know. I’m so down on radiation. I realize that it’s also needed, and yeah, I do have cancer, so there is that thing that could kill me. And radiation works. Proton works just as well with fewer long term risks, at least that we know of so far. https://academic.oup.com/annonc/article/28/9/2179/4082165

My chemo reward

So it’s perfectly normal to go to the animal shelter, pick up a dog in the morning, then go for chemo in the afternoon, right? Cause that’s what I did last week. Sandy is a housebroken, and crate trained-years-old wire-hair Jack Russell Terrier with the cutest eyebrows ever. She is adjusting her fairly well, only being a jerk to Zoe a couple of times. Zoe is ok, too. Maybe a bit annoyed, but she is too chill to care much.

In other news, I don’t have any info on radiation yet. So no updates there. I’m probably trying too hard to get back to baseline, as I’ve been trying to walk a couple miles a day. And it takes it out of me. I feel mostly OK, except I’m just beat. But beat in a way that doesn’t want sleep. So it’s that annoying state at the end of a cold/flu where you feel like you should be back to normal, you can’t sit around and do nothing anymore, and you just have to get up and do something, but then when you do, it’s too much. So annoying.

I’ve been entertaining myself with twitter. My twitter persona is turning into one of those cancer activists. Twitter me agreed to go to a public meeting on patient advocacy at the FDA. Real me isn’t sure if she’ll show. Twitter me has made some twitter-friends on the cancer community. Real me doesn’t even talk to people in the waiting room. Twitter me is an extrovert. Not sure where this will lead, but I suspect it’s not going to be where I put this in the past like I did before. You know, Kyle and I didn’t even use the cancer word. We referred to that period 15 years ago as “my issue.” Pretty sure that is gone. Cause it’s a whole new world now. I wasn’t cured. Or maybe I was, but I got it again. It’s not a virus LOL. But apparently, there is debate as to if late relapses are the same disease as before, or if it was triggered again and is new. Weird. Only way to know is generic tests on both tissue samples, and we can’t find my original biopsy. So I’ll never know.

Done with chemo!

Finished up chemo this week. Thanks to getting the insurance stuff straightened out, we changed brand names on one of my drugs. Supposedly, the only difference is the infusion time (1 hour vs 10 mins). I don’t know, it seemed to hit me faster (last night), and dissipate faster. Like I feel human today.

So in other news, not sure if I mentioned it, but cardiology is trying to run down the stroke thing. So, I’ve been wearing a heart monitor for the past 2 weeks, with another 2 weeks to go. Yay?  I kinda hope it finds something, because the not knowing why part is terrifying.

Not sure of the timeframe for next steps. I go see my oncologist again in 10 days, and I guess from there we discussion how long til radiation. Or maybe I should ask.

PAID!!

Insurance has now paid for the chemo claims they denied. I’m not going bankrupt and I don’t have to sign over my spare house.

One more little thing

So, I’m not one that likes people to make a big deal out of *waves hands* this shit. If you call me brave, I will argue with you. But having cancer in your 20s and 40s, and not breast cancer, sometimes makes you look around and think “why does she get that?” Or “why can’t *I* get [free trip to Disney/housecleaning/my own social worker to deal with insurance shit].” The infusion nurses have given me the pink BC bags before, probably bc every other woman in the room was given one. But it was still nice.

Anyway, last weekend I got a shout out from stage when my favorite band was performing. It was really sweet, and probably only a handful of people there knew he was talking about me. Big bonus for not using the C word. But still, it made my day. I didn’t get the intro on video, as I was walking back to my seat. But here is the song. A few weeks before I had mentioned it was my chemo anthem, so they played it for me. And for everyone else there. But here is the video. If you every get a chance, go see Melodime. They are the nicest people ever, and great musicians, too. Tell them I said hi.

Home from vacation

It’s been a hella year so far, and coming across a large rattlesnake while hiking just caused me to laugh. Cause that would be so fitting of something to take me out. She had a stroke. Cancer. Chemo. But no, it was a rattlesnake. Anyway, it didn’t even wake up, so I’m still here!

Sedona was awesome, as it always is. Plus we made a side trip to see Antelope Canyon. It’s a slot canyon near Page, AZ. Google pictures, is Ah-maze-ing!

Now here is where being a project manger is coming back to bite me, I live by schedules, deadlines, and plans. Mentally, the delay in chemo is making me dread the next (last!) one more. I JUST DON’T WANNA DO IT AGAIN!!! But, as my dad would have said “suck it up, kiddo. Life’s not fair.” Of course, the is the man who said OChem is easy and couldn’t understand my D+ (also the semester I had mono, aka espstein barr, aka likely hodgkins root cause, it all comes full circle). So anyway, I start another zombie week on Tuesday. Which is throwing my schedule off. I have to take my normal things, like “must poo by Monday” and back it back two days. So now Saturday is my target poo day.  This is my life, but at least it’s one. Thank you sleeping rattler