Checking In

With 7 treatments done and only 3 left to go, I thought this might be a good time to evaluate where I am and what’s happening. There is, of course, extreme fatigue from the whole brain radiation. It comes and goes and isn’t constant, so that could be a plus I suppose. Although if it were constant I could at least plan a little better. The headache is no longer – and that’s a relief, not so much because of the lack of pain, but because it means the brain swelling is going down or is gone. I’m down to one steroid pill a day from 4 a day at the start and that is great news.

There is now a rather red area on the back of my neck in line with the 6th cervical spine, which is where the targeted radiation is being focused to deal with the metastatic tumor inside the spinal column. The pressure on the left ulnar nerve must be lessening because I’m able to mostly use my left hand without any problem, except for my fingers stumbling over themselves when I’m typing sometimes. But i’ve noticed that as long as I keep a steady pace and don’t race, I do okay.

I’ve also had somewhat of a dry throat. It’s not sore exactly, just dry and croaky. And the inside of my right cheek and on the gums seems to develop transient sores and bumps. Nothing intolerable to this point, so all I can do is check it out daily to see if it’s better, worse, or the same.

There are a couple of things I find interesting, though. I don’t have much cognitive deficit at the moment; my brain does feel full of cotton balls at times. The worst thing I’ve noticed for the last 2 or 3 days is an intense craving for salt. I’ve always liked salty foods – like my inclination to eat anchovies straight from the jar – but this is so much more intense. I’m trying to pace my salt intake with plenty of fluids but today we ran out of sea salt and I had to resort to cayenne pepper to soothe the craving. This is quite weird. I’m not sure of the mechanism that’s causing the salt craving, but I’ll research as I’m able. And then there’s the “listing to port” when I walk (or is it starboard? whatever, I’m a little lopsided!) That comes and goes, too. Now I know that some of these effects will go away, some won’t, and some might appear that haven’t yet – that’s the nature of whole brain radiation. All I can do right now is compensate as best I can, and stay vigilant to see what comes, what goes, and what stays the same.

Onward and upward.

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What an Ordeal!

I had my planning session with the radiology oncologist today in preparation for getting radiation starting tomorrow. As usual, it’s a mixture of good and bad news. The tumor pressing on my left ulnar nerve (the one that runs down the outside of the arm that’s been causing problems with my little and ring fingers) is actually inside the spinal column and not just in the bone. Apparently that is very unusual – anyone surprised at that? I’m definitely not!! And the lesions in my brain are more than 4 – that’s what they meant when they said too many to count because if there’s more than 4 it’s whole brain radiation instead of focused. They will be able to focus specifically on the C-6 spinal tumor – so that’s a good thing.

Today they fitted me with the mask. It’s a mesh that is warmed and pressed down to conform to my face, then fixed to the table so I can’t move. They also tied my hands to a long tether around my feet to pull down my shoulders and keep them still. Then I was moved in and out of the CT scanner a few times and the mask marked so they know where to aim. My claustrophobia kicked in wearing the mask, so I’ll be taking my relaxer before I go for treatments. They also marked my chest with a little tattoo – not the tattoo I wanted – for placement purposes.

I will have 10 radiation treatments – that’s every weekday for 10 days for 10-15 minutes strapped down on the table. Happy happy joy joy! By the time I was done today, my wrists and shoulders were sore and aching. Thank goodness for drugs!

I still have the imprint of the mesh on my face and a couple of marks on my wrists from the restraints. At least it’s only 10 treatments this time. Then we re-evaluate. Now they just called me to come back for another scan of my C-spine, which evidently didn’t turn out quite right the two times they did it this morning. Hopefully I won’t have to put the mask on again, but if I do, I’m prepared as I took my Ativan as soon as I got home.

The side effects include hair loss (just as it was starting to grow in again!), nausea, and some others that I have written down. There are some less common ones that I expect to have eventually – I’m getting used to being an outlier though I don’t necessarily like it.

So I will endure this as it means hope. Onward and Upward!!