10.22.2017

Steroid Rage is a Thing: Updates from Cancer-land



Steroid rage. Kidding. Kinda.


Sitting here in steroid-induced mania, I decided I would write an update. It's October 22nd - which means it's been 22 days since I haven't had use of my right hand. It's funny when you think of quality of life - what would you sacrifice? - and having a right hand isn't one of them. I still can pick up a purse, but I drop just about everything - from the quiche to my mascara. I can't do much of anything creative (goodbye colouring!), and can barely hold my own fork.

I think my left hand is over compensating by now (as I type this with my left only), and I worry if I ever gain use of it again, it won't know what to do or have the strength to do what it used to.

I've tried everything - from left handed keyboards to voice to text apps (why can't they understand punctuation..) to a "pop socket" (which has proven, actually, to be the most useful).

Three months ago I had a brain MRI, and my new brain radiation doctor told me it looked as if I had a new tumour in my cerebellum - above my neck. Since it was close to another previously radiated spot, he was worried if he hit that one, I may have cognitive damage. Which is why, when I started losing function of my right hand, I knew what it was from and I didn't go to emergency. Still, I went for my MRI at the civic, and my sister-in-law peer pressured me into telling them. I spent the day in emergency. They read my results and determined I had swelling in the cerebellum of my brain. They prescribed me steroids, which I am against (summer 2016... shudder), but I knew I needed them to avoid being inflamed and having a seizure.

They told me to expect a call that Monday (the 9th), with a treatment plan. Not to knock on anyone's jobs, but when a potluck is being served and my MRI is cancelled and I still can't use my hand, I get a little pissed off. My doctor did call, only to tell me "there wasn't anything more he could do for me". Maybe a slight language barrier, but in cancer treatment, THIS IS A PHRASE NO ONE WANTS TO HEAR. I was well educated, so I knew surgery was an option, but having someone say that to me is something I'll always remember.

I got another MRI at the civic, to determine if it was actually new tumour that is growing in my head - or just radiation necrosis. This is dead tissue, but needs to be resolved like a tumour because it is taking up room in my head (AKA why I have no fine motor skills in my right hand). I had that done on Friday, the 20th. They should call me tomorrow with a new plan of action.

Dr. S - my neuro surgeon - told me that if it's necrosis, which he thinks it is, it could be resolved by steroids. This is a better option then having brain surgery, of course, but I'm almost done two weeks of steroids (for example, though - I was on 32 mg last summer, this time I started at 8 mg), and my hand seems to be doing worse. Quality of life is very important to me, so if the surgery is safe, with little side effects, I will go for it. Who knew open brain surgery you were awake?! From what I've heard it's tolerable and safe, but i'll ask tomorrow when they call. He originally told me 6 weeks of steroids - which I will deal with - puffy face, the weight gain, the constant hunger, the blurred vision, the headaches, being out of breath constantly and NO sleep - if they can guarantee my hand back. It's such a weird thing to have to think about, but at 11PM on a Sunday, this is what I'm contemplating.

In other news!

WE MOVED. We live in Carleton Place now (and no, with this gimpy hand I can't drive...), but we save all of our rent from living in Westboro (plus bills etc). This gives us a lot more freedom that I hope to experience with Jeff this year - travelling (even though, no health insurance! Where is safe that I need to go!? Short plane rides!).

I've kept myself pretty busy this September with the CIBC Run for the Cure (our team raised almost $15 000)! Despite being a Stage IV speaker, I got great feedback. I am grateful the packing/kijiji'ing/moving came before the issues with my hand because I don't know how I would have gotten them all done.

I was planning on going back to work very part time - 8 hours a week - in Kanata to experience some Christmas retail joy (I LOVE IT!), but without a working hand and a looming surgery that has been on the back burner. Cross your fingers for me! Life has it's way sometimes.

My voice is also not back to 100% (if Pure Kitchen brings me another turmeric shot - "it will make your throat feel better!). I have an appointment on Halloween to see my throat surgeon about a more permanent option for my voice. Right now, they injected my immobilized vocal chord with a botox substance, but a real surgery will entail a clip to hold my vocal chords together. Again, not a surgery for everyone, but after I heard my voice at the run.... I was like, is that me? We are lucky to get something that would normally be expensive in healthcare land for free here in Canada, and I always choose to feel very lucky for that.

This Tuesday we are having a Halloween book club (group costume with Kris and Wyatt!), and Saturday we are throwing a Halloween party. Friends are coming down, and I am so excited to see them. Life as usual, but weird with cancer trying to get in the way.

My birthday is November 18th, and Jeff and I made big plans to go to Nashville. Half me - wanting to see the CMA Christmas at the Grand Ole Opry - half Jeff, wanting to get a fried chicken sandwich and experience some of the food and culture they have to offer.

I went on a limb and got re-scheduled  Lady Gaga tickets in Montreal and will spend the weekend with my aunt. I have tattoos and Christmas markets to look forward to and every day I feel good, I refuse to lay in bed and feel down.

It isn't always easy - I often think... is this my life? but I've become quite good at accepting my reality - with cancer, with family and children, with work, with life. I am happier when I get to see family, friends, and have experiences I KNOW I wouldn't be able to experience otherwise.

So, time will tell with all the unpredictable variables above. All I can hope for is another day of feeling good, more treatment options, clinical trials. More snuggles with dogs and babies and husbands. More time.

That seems to be the recurring theme around here lately. More time.

Here is a spam of pictures that are NOT organized (oof! time!):


All that matters. Family, friends, husbands, pool parties, raising awareness, random road trips, hotdogs, winning things, cottages, photo shoots, cancer galas, funny cards, pedicures, work besties (turned into IRL besties) and new babies. 

That's it for me today, because this took me three hours to type up (maybe shorter IS better... less words!)

If you want to reach  out to me - I am always happy to one handedly e-mail or Instagram.



xoxo

sam
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