Before Christmas, Phil and I met with the Radiation Oncologist re: the spots on my pelvis and spine. It is a bit hazy since it was the morning post adrenal crisis and Phil had to give me a second shot before I could roll myself out of bed.
He was great- I was a mess. Phil asked the right questions, we looked at the images. Those always hit home. There was also a spot on my right pelvis that we wanted to consider scanning prior to treatment- in case it needed a zap. Scans are great, but really unless you biopsy-you don't know for sure what you are dealing with so you can watch and wait- if it walks like a tumor, talks like a tumor...
I wanted to discuss a few things with my oncologist, endocrinolgist and trusty mutants before setting a date. Then there is Phil's nebulous schedule and trying to plan. My nurse and oncologist opined that radiation was probably our best choice, it was too soon to rescan with PET though, so they would discuss timing with the rad onc while I contacted the endo. Between training days, holiday, chemo- this is a process and of course mid discussion with endo she drops the- I'm going on maternity leave bomb. sigh. She helps me calculate stress dosing and gives me the on call endo's name. I ask her politely to please fill him in on me. Of course. No seriously...I did come away with a decent- avoid crisis during chemo weeks plan and a window that would be better for rads.
So new Year's came and went. We headed into January chemo. It was the best time to settle the radiation decision- I was going to do it- just had to get up the nerve and time it. Fortunately it was super busy in the Bay and no one was particularly bothered to lecture me AND they put me back in the isolation area which-drumroll please-I had never even visited. It was just that busy. Phil tries to knock out some other things while we are there and found my Debbie friend in the abyss that is the pharmacy waiting room. I have a very short list of people allowed to sit with me. Many say they feel bad when they see people alone in the Bay- for some it's a time for meditation- as much as you can in a big room with 10 strangers all in varying degrees of discomfitude and everyone knows everyone's medical business. I also now know where they keep the snacks! And am grateful Deb got to share the time with me- it made a long day more enjoyable.
I keep my schedule open now the first 2 weeks after chemo. I find that emotional stress honestly pushes me towards crisis pretty quick and if I run around too much, well that doesn't help. There were 2 major events lined up for the Saturday, a paddle out memorial for a friend and a 1st Birthday celebration for a special little friend. Both events carried with them significant emotional balloons. Then Thursday evening, the rad Onc calls and wants to schedule treatment which entails a planning CT, planning period then radiation. We were going to wait for the next PET, but overall- no time like the present? I scheduled the planning CT for Monday, not knowing how long the planning period would be and having already scheduled a Physical Therapy appointment. I explained that I wanted the treatment before chemo, but not during the crisis prone first 2 weeks after chemo, the other issue being my pesky platelets which are not rebounding at all. He mentioned planning could take an afternoon to a week depending on several factors. But his plan was to use IMRT- a more focused arc of radiation to avoid damage to surrounding tissue as much as possible. Very similar to gamma knife.
With short notice, I knew Phil's schedule might not be easily arranged and asked Kiera to skip school to drive me Monday. You'd think it was Christmas. Sweet girl. Germaphobe and all- I even told her she didn't have to come into the hospital with me, but she sat while I did PT and then even chatted later with the rad onc. She was a little put out that he over explained things- but I prefer that to the alternative. She was thrilled to watch HGTV in the waiting area- squeaky couch and all while I did my prep CT.
Now, we try to avoid radiation when possible. Radiation works by damaging cells- my mutant body doesn't clean up that damage as well as a non mutant's. So normally I'd fuss about all the CT's and stuff, but feel like we are on the same page and the info has been passed. I get a gown and robe and am instructed to strip waist down. I'm so used to waist up ops- I feel overdressed on top- bra, shirt, gown and robe. Truly grateful I wore a long shirt- feeling a bit breezy- but all's well. The tech takes me into the room, explains the process, how it will work today, why, how it will work for the actual treatment, why planning could take an hour or days....he was great. Theres a blue pad on the table- I lay down and he will squoosh it around my legs to make a mold- it helps to keep the pelvis and spine in the same position for treatment. I manage to gracefully lay down, keeping covered, he lays a blanket on me and proceeds to squoosh the mold. A couple minutes in he huffs like Dobby does when you won't share dinner with him. I apologize for being difficult- he says he's just not happy with the mold- would I mind trying again? I don't mind at all- I prefer them to have exactly what they need for the best result and I imagine these mold thingies are not cheap. I hop back up as he brings the next mold over and lift my legs so he can put it under. As I do this- a nice cool breeze reminds me I am commando. Oh Dear- I shove the gown between my legs and apologize- probably should have considered groundskeeping with pelvis anything- but I wasn't expecting commando and CT don't care if you shave. Then I realize the door is at the foot end- lucky no one walked in-and right above the door is the closed circuit camera. Yay- my first naughty tape- of course it would involve a scanner of some sort. boom chicka wow wow- I didn't order any contrast....
Anyways- Cts are fairly easy peasy and quick- you know if you have ativan on board and have gotten past the genetic assault about to occur- it was the set up and the markings that take time- I got four stickers(one on each hip, one on my belly and one apparently that was hidden in my c-section-hysterectomy scars- how embarrassing?) to wear home and the tech said they would shoot for Monday or Friday of next week but he'd call once planning was done to confirm. Needless to say- I was surprised when he called the Tuesday afternoon as I was picking Bella up from school. He said the planning was done- which I guess is good- no surprises and I could come in tomorrow or any day this week if it was better. ARGH. I hate the the ball is rolling too fast now feeling. hurry up wait hurry up wait. I let him know I have to check Phil's schedule and that would really set the day. They are way easy going in the rad onc clinic. It's a bit creepy at times. He said just give him a call- if we can do tomorrow great- they had everything they needed so it was when worked best for us.
Phil was flying Tuesday, I knew I wouldn't hear from him until later, so I texted him the deets and was surprised after he landed when he responded Wed. works best. Wed. as in tomorrow. Ok- let's do this. I kinda wrote off the evening. Spend an hour boo hooing on the phone with my friend Trish and had the kids make themselves dinner. Phil got home. We decompressed. He slept. I laid there performing great mental gymnastics- olympic level shit. Enough that by 3am I wasn't sure if I was in full on panic attack or adrenal crisis. It's one of those things- You can talk yourself up, down, around, in between. You can relate it to experiences and know you've come out fine. And you also know shit happens. Radiation was awful for my dad, it killed my grandfather. Neither would have survived their tumors- but the rads made it worse. I know so many who struggle from the after effects. The plan is one dose and done. Higher dose, but more precise, hopefully less damage. I was terrified of gamma knife- it wasn't easy but comparatively an easier way and not too tough to tolerate. The whole brain surgery swelling mopping up later are the after effects I speak of. And I've been really lucky there too. The PTSD is there. You just deal. Sometimes with big doses of antianxiety meds when the oils and the pacing and stretching all fail.
So I woke Phil up, he held me on yet another ledge until the ledge ebbed away and I slept for like an hour until the girls came in to say goodbye and I had to shower. Everything went really smoothly today. As planned. Got there- got set up- got irradiated- didn't feel a thing. They did give me 3 tattoo
This blog brought to you from my quiet space.... ha ha ha ha- but they are very sweet if not conducive to my writing. Oh my God- I almost forgot the best thing- we got a parking pass to park in a radiation therapy spot today! And there was a spot- and we parked in it! Sometimes its the small things. Now I have to wait for my mutant superpowers to reveal themselves!
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