It’s October? What happened to summer???

I have been stalling a little bit, okay, a lot, on this blog post. No particular reason, just not feeling overly creative. Summer turned out to be a bit of a blur. The weather was absolutely amazing but the Bell’s palsy symptoms really put a damper on my activities.
I have regained a lot of the motion in my face……although I have to admit since I don’t spend a lot of time staring at myself in the mirror the motion part is really the least important thing to me……aside from no longer needing a straw every time I have a drink.
I am still not blinking as much as I should so dry eye is an issue. I alternate weeks of taping my eye shut while I sleep so my face doesn’t get too sensitive to the tape glue. And I spend a lot of time putting in eye drops. Fortunately Costco carries big boxes of eye drops so I bottles all over the house.
I am pretty deaf in my right ear. To make it worse I have a constant rushing sound in my ear and not silence. I have discovered I really appreciate silence. I hope that some day I experience it again.
To go with the deafness my balance is also wonky. I am the first to admit that I am not the most coordinated person but I’m pretty sure I look like I just stepped off a boat for the first time in a year the way I veer randomly down the sidewalks these days. And then there is the general risk of just falling down. My poor right leg has a truly beautiful assortment of bruises. I’m am glad it is pant weather now to hide them.
And then there is my tongue. Seriously, why is my tongue always affected???? The taste buds on the right side don’t work and you know that burny feeling you get it you eat too many acidic foods at one time? I have that feeling ALL the time. Sooooooooooooooooooooo annoying.
I suppose it isn’t totally horrendous. I find that every 4 or 5 days I have a better day and the symptoms are more tolerable. Over all though, I think these symptoms are worse than a lot of the side effects I had during chemo. Except maybe the nose hairs. Endless drippy nose still wins.
A week or so after the Bell’s symptoms started I had a head MRI to see if it could explain what was going on. The last week of July, as soon as the MRI report was available I talked to my oncologist. The MRI may show signs that the soft tissue around the spot I had on my skull was starting to grow. The problem was that the MRI was being compared to the PET scan I had in January. Any differences between the scans may just be due to differences in technology so I got booked for another PET scan for the end of August.
In the meantime, in case the PET scan does end up showing growth around my skull which would mean more radiation, my oncologist put me on the wonderful steroid dexamethasone. Yay. The steroid is supposed to decrease inflammation of anything that is growing so hopefully improving my symptoms but also decreasing the side effects of the radiation should I need it.
My oncologist had already contacted my radiation oncologist that more radiation may be needed.
Even on the low dose I was put on it made me a little crazy. Insomnia, twitchiness, obsessive carbohydrate cravings, and water retention…..the moon face of steroids is so off putting. I freak myself out every time I look in a mirror because I don’t look like me.
The day after my MRI results were available I also saw my neurologist……I was actually called for a same day appointment. He wanted to do a physical exam to see my symptoms before passing on his opinions to my oncologist. His opinion was that I should go for another PET scan to confirm the MRI and that most likely I would need radiation to the skull area. Nice that everyone was in the same page.
I spent most of August trying not to fall down and waiting for my PET scan. We did a little wine touring while Carly and Justin visited and Ian and I even popped down to Port Angeles to see his sister and brother-in-law. It was a fun day trip on the Coho and Port Angeles has some very good food and drink places. I unfortunately had to miss the Isaacs gathering in Winnipeg……I did my best to keep up with the gin and tonic consumption.
The penultimate (hahaha……I love that word. I only ever hear it in bicycle racing) weekend in August was my whirlwind trip to Vancouver for my PET scan. Thank you to Keets, David, and Satori for hosting me and to the few people I managed to visit with. I am hoping to having a longer trip over soon to have a better visit with you all!
I headed to the ferry immediately after my scan as I had an appointment with my radiation oncologist scheduled for the following morning and Herceptin for the following afternoon. This is part of why I don’t work these days. It would be really difficult to fit all these medical appointments in around a job, particularly all the last minute ones I seem to get.
When I saw my rad onc she had the pictures from my PET scan but the report was not ready.  Not a big surprise since it had only been about 20 hours since my scan had been completed. From the pictures she was able to see that there had been growth in the soft tissue next to where the skull lesion had been earlier. Yippee. More radiation. This did explain the Bell’s palsy symptoms as the tissue growth was right at the base of the skull where the nerves enter the skull. The tissue is pressing on the nerves and causing the symptoms.
Radiation was scheduled for 5 treatments. Each dose would be less radiation than I had during the previous hit to my skull but the total would be more. Hopefully the premedicating with the steroid was worthwhile and I don’t get sick like I had the previous time.
An hour and a half after the consult I had my planning scan…..see what I mean about short notice appointments? And an hour and half after that was Herceptin. Busy day. Radiation was scheduled to start the next day…..oh boy.
Mom drove me to my 5 days of radiation as I really wasn’t sure how it would go. It wasn’t super fantastic but it ended up not being as horrible as the first time. Some nausea and general hideousness feeling but it definitely could have been a lot worse.
Since then I have been waiting to see if my symptoms improve and trying to get off the steroids. Face mobility is very much better but the rest is pretty hit and miss. Some days are better some days are worse but overall there hasn’t been much sign of consistent improvement.  Last time I had radiation it was at the beginning of September. My headaches didn’t go away until April even though by January the lesion was essentially healed. Perhaps I just need to be more patient, I just don’t want to be. I am ready for some silence.

3 thoughts on “It’s October? What happened to summer???

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