Wednesday, January 24, 2018

Waiting for Superpowers

I'm hopelessly behind on updates. So I'll try to be quick. I keep thinking I'll write a quick post or thought a day, but something pops up. The kids and I are doing these daily journal books- which are quick and fun and also give me an idea where we are all at emotionally. Kiera doesn't participate but helps clean and run errands- which gives me an idea where she's at.

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
dots as markers "in case"- I asked if she could do an elephant- she said no. Plus the stupid low platelet thing made them bleed and she was not down with that. I hope the recovery will be unremarkable. Everyone says I should tolerate it very well, as it was just a single dose and radiation effects tend to be cumulative. I had a great ativan nap when we got home and Phil made a delish dinner and now it's time to decompress.

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!

Saturday, January 13, 2018

Ballistic Missiles and other Disasters.

Last night I took an ambien to help me sleep. I try not to take it more than once a week- I hate relying on meds- but the other meds, the steroids keeping me alive while chemo is fighting the cancer- causes me to lay awake at night- physically exhausted but unable to sleep.

Phil had today off- I try to plan around when he's here- in case. You know. Kid vomiting, someone launches a ballistic missile, that kind of thing. Which also sucks, putting him on the hook when he's had long weeks- but you know- parenting, partnership all that jazz. Plus he was "on call" this morning. You know in case the aina was threatened or something. So he had to be up an available at 6am. I felt a little bad. The glass of wine before the ambien made that better.

The good news is we got through week 1, no adrenal crisis. I had many conversations with specialists this week, we are trying to figure out the best timing for my body to deal with the new/new old bone mets in my hip and spine. I am a HUGE believer that we have to keep keep the system as strong as possible- so I'm not charging in- BUT we have to balance the need to take care of this in a timely manner. Then there's the whole fear of radiation and stuff and the my mutant body's general dislike for the ionizing elements.

The past weeks have been tough emotionally. A dear friend lost her son, another lost her husband- there are other losses. It's hard. It's a helpless feeling. I know there is virtually nothing I can do to fill the gaping losses, but it is my nature to want to try, to hug the ever loving daylights out of someone if all else fails.

I woke up this morning to text after text- are you Ok? Shit- people have a glass and wine and ambien all the time- it's not a great practice- but is a decent night's sleep. I don't make a habit of it.  Did I do a bunch of 'influenced" texting? no. hmmm. I head down stairs- Phil is on the phone. He hangs up and immediately responds to texts. Well although not unusual- he usually looks up. Hmm. The boy is out hiking, I missed a call. Oh shit. One of his friend's mom had texted- he was ok, they had talked to him after the alert. Alert? Oh crap- there was a ballistic missile launched towards Hawaii. No wait- it was a false alarm. Phil looks up- someone hit the alert by accident- there's no missile. Don't go anywhere near social media. So, of course, I log in to facebook. People are completely panicked. Well, were an hour ago. Now everyone is grateful to be alive and pissed at how this could happen- Someone needs to be accountable for this- the alert system needs to change.

I wait for Phil to look up- his phone is blowing up. No pun intended- oh hell pun away.  I start responding to texts. He hasn't heard from Phillip. The girls are all still sleeping- he hands me a plate of eggs and bacon. We have breakfast. Yeah that's right- my rockstar husband made breakfast whilest dealing with a missile crisis. Or fake missile crisis. Blast you fake news. *fist shake*. It's family cleaning day. I think the Gods are sending me a message about the enormity of the task at hand...

The girls have all had fallout drills, chemical spill drills, and evacuation drills of all sorts this year. Each one is followed by lengthy discussions at home about what to do in a veritable cesspool of situations- 1000 ways to try not to die. Another day in the Mallory house. ' Pretty much hunker down- it's a flipping island. We practice giving shots in case of health emergencies- so we kinda just roll with the emergencies. Bella is particularly concerned. Insert discussion about radiation fallout and finally getting our mutant superpowers.

I am not dismissing anyone's heart attack or stress this morning. I've felt it- hurricane, tornados, tsunamis- blizzards, lock downs at school, cancer diagnoses, LFS diagnoses, broken pancreas, adrenal crisis after adrenal crisis.... Every day Phil flies- knowing that could be the day- the heightened risk. Crossing the street. Driving on the H1. Life. Full of heightened risk and risk management. And so many times- NOT ONE FLIPPING THING YOU CAN DO ABOUT IT. If a missile is launched- the best we can do is hunker down and hope for the best. I guarantee you- I would have been a wreck had it been a school day, or Phil had been gone. Yet by nature of his job- they're usually the first to know and go.

This is the type of stress I feel before every scan- mine and the kids- knowing that this information WILL change our lives from here out. AND THERE'S NOTHING I CAN DO ABOUT IT.  When there are lumps and bumps, waiting for the next cancer shoe to drop. Trying to pick between tumor treatment and side effects. Sometimes you get the glorious all clear- false alarm and everyone cheers and you should feel grateful- you ARE grateful but the scanxiety, the stress- took months, maybe years off your life. YET by catching cancer early- trying to prevent risks- you can add years .

I understand wanting to hold someone accountable. To find a reason when there is no good one. I understand the frustration of energy wasted on stress, the gratitude of- false alarm. The what if the next time is real. I am very sorry everyone had to feel the stress. I am sorry that many people completely lost their shit. As the girls rolled out of beds- their teeny bop friends texting, extending the drama of certain impending death- we cleaned the house- because apparently it is not yet officially a natural disaster. We talked about survival and life and found 5 of Dobby's bones under the couch. We laughed, we hugged. Because we know when the ballistic missile is really launched into your life- it's the moments like this that are the ones that determine your life- because through life and other disasters, we choose to live each day the best we can. 

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)