Whole Brain Radiation

I’m done with the radiation treatments – the last one was the day before Thanksgiving. But I’m not happy with how I’m feeling. I feel frail and off balance. As if I’ve aged 20+ years in the last 3 weeks of treatment. My throat is sore – every time I swallow it feels like I’m trying to swallow razor blades. If you’ve ever had strep throat you know what that feels like. No matter what I eat, it hurts to swallow. Except for ice cream after the first few swallows. And crushed ice. It even hurts to drink water.

I’m still off balance and listing to port. I am very careful about walking, especially in the house as Peanut has to lie down in the middle of the hallway so nobody can get past her without her knowing. I suppose that’s part of her herding instincts to know where everyone is at all times. But it sure makes it hard to get past her without tripping!

And the fatigue is awful. It’s way worse than any I had from chemo. I hardly have the energy to get out of bed and spend most days in my PJs. Afternoon naps are essential – and sometimes morning naps, too. I hate feeling this lethargic, but I keep hoping it will get better. I know it will eventually, but not fast enough for me.

I know these effects might be transitory – at least I hope they are. And I know there might be more side effects to come as the tumors in my brain die (they’d better by dying!!) And my hand is still tingly, but not bad. And it seems to get better then worse.

The worst part for me is the lack of focus and the inability to come up with the right word for something. For a writer, that is awful. I can laugh about it most of the time, but it’s still frustrating. I suffer from what I call butterfly brain; flitting from one thing to another without knowing how I got there or even if that is where I wanted to be. I’m trying to be gentle with myself, because I know these effects aren’t me. I have to take care of me. And Steve is being a big help. I am so fortunate to have him here with me; taking care of me; and taking care of the dogs and our home. I’m not sure I could have gone through all this without him.

Onward and upward.

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.

And Now. For Something Completely Different.

Things are going well on the cancer treatment front. My symptoms are subsiding. Reducing the steroid doesn’t seem to be causing any untoward effects. I had energy today. So I thought I would get away from the subject of cancer just for today. Some things have been bothering me, and I need to rant a little. I’ll understand if you don’t want to read this. And nothing here is directed at any one person. I’ve been letting these things rankle for a while, and I need to clear the air.

I am sick and tired of reading memes that are re-posted on Facebook without any attempt to determine their veracity, or even if they are relevant. You know the ones. Lamenting how today’s youth have no respect, wear their pants around their thighs, etc. How do you think they got there? Parents have been lamenting the vagaries of youth since Old Testament times, and probably before that. If you don’t like how youth these days are behaving, then do something about it. Volunteer at a school. Help out with foster kids. Teach kids respect for themselves and others. Quit complaining.

And on the subject of memes, the political ones make me want to scream. I get that some of you don’t like our President. I get that some of you don’t like our Congress. But really, Obama has been president for 6 years. He’s not going anywhere for 2 more years. Get over it. Just because he won’t release his college grades doesn’t mean he’s stupid. And no, he’s not a Muslim. And yes, he’s a US citizen. No matter what you think of him as a person, he is our President. If you don’t like him, you’ll have your chance in a year or so to elect someone else. I hope you like who you get.

And on to religion. I’m tired of whiny christians complaining how they’re being persecuted. Right here in the US. Because some people don’t want God in the public sphere. That’s what the Constitution is all about. Freedom of and freedom from religion. You want to see christians persecuted? Go to a country that is predominantly non-christian. Here in the US you can worship in any church you choose. Or not. You can stand in the middle of the street and pray if you want. There are other religions that are just as valid. Being non-christian does not make one immoral or less than human. And the Constitution is supposed to guarantee there is no one religion given preference above all others. But let’s face it, Christianity is favored above all others. Non-christians have to fight to be recognized in things such as taking an oath of office.

And let’s not even get started on the 2nd amendment! You do know there are other amendments, right? I sometimes wonder if people realize that we also have freedom of speech and freedom of assembly. Although reading the news these days one wouldn’t realize we have these freedoms. Protests are contained to small areas by militaristic police departments. I see protests in other countries and wonder what happened here in the US. I witnessed the 60s first hand. Our generation fought for women’s rights, civil rights, against the war, for peace. And I wonder where all the protestors went. Are today’s young people so out of touch with current events? I see a fascination with celebrity, with ‘reality’ shows that aren’t real, and a lack of interest in voting. The recent mid-term elections are proof of how low we have sunk. Money has taken over politics and we live in an oligarchy that isn’t going to change until we become galvanized to take back our country.

I could probably go on about the decline of intelligence, and the lack of proper grammar, and any number of things. But I’m tired, and I need a nap.

Onward and upward.

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!!

A New Adventure

Today I had an MRI of my brain and cervical spine. It went well with the IV sedation, although the nurse had to give me another dose as it started to wear off too soon. Since they were viewing two areas, it took quite a while. I was planning on getting the results tomorrow at my regular treatment appointment. But we had only been home a few minutes when my PA called. The radiologist had called her to let her know they saw multiple metastases in my brain. She apologized for telling me over the phone but didn’t want to wait until tomorrow’s appointment. The radiologist was surprised that I wasn’t having horrendous headaches. But I’ve had no symptoms, unless the problems with my hand are related to that. So now it’s time for brain radiation. A whole new adventure! And it means I’m back on the Dexamethasone but twice a day for now to reduce brain swelling and prevent seizures.

We will keep our appointment with the PA tomorrow as I still need my flu shot and possibly my regular blood work. Then on Wednesday we have an appointment with a radiation oncologist to plan the next step.

This was not what I wanted to hear, but I wasn’t surprised, I sort of knew, just like I knew I had lung cancer before my doctor told me.

So once again Onward and Upward.

Wishes

Star light, star bright,
The first star that I see tonight,
I wish I may, I wish I might,
Have the wish I wish tonight.

For some reason, this little nursery rhyme jumped into my head as I sat down to write this blog post. Perhaps because I decided to write about wishes. Or maybe because we had just been outside with the dogs.

I am participating in National Novel Writing Month (NaNoWriMo for those who don’t know) after having to skip last year because I was diagnosed with cancer in October and spent November in a whirlwind of tests and chemo and its side effects. I only mention this because I am having to type during those small windows of time when I’m not hurting. For the last couple of weeks, my left hand has been hurting, itching, and numbish. It started with a prickling sensation in the webbing between the little and ring fingers, as if there was a cactus spine stuck there. That progressed to itching and pain. I can’t scratch the itching because that causes intense pain. And then there’s the vague numb sensation in those two fingers and half of the middle finger. Then there was the pain in the elbow and next to the shoulder blade on the left side. And if I’m holding something in my left hand, half of the fingers start trembling. So I’ve decided it must be a pinched nerve in my neck from sleeping in weird positions to try to stay as upright as possible to defuse the acid reflux.

And then my right big toe went numb along with part of that foot. That’s the toe that I ripped the nail off a few weeks ago, so that freaked me out, too. I have no idea what’s causing that.

When I called my team, my PA’s first question was am I having headaches, which I am not. So she talked to the onc doc who wants an MRI of the brain and cervical spine. And on top of everything else, now I have no energy and can’t seem to pull myself out of this ‘slough of despond’ I’ve fallen in to. By 2 or 3 in the afternoon, I have to take a nap. I have no energy. I can’t sit and type for any length of time. And forget crocheting. I’m right handed, but my left hand is just as important for crocheting or knitting. I had only recently rediscovered the joys of knitting and crocheting, and I can’t even do that now. I’m taking ibuprofen several times a day hoping that will reduce the inflammation and the pain, which it does, but not enough to be able to sit and compose on my novel. Since I can’t write, knit, or crochet, no wonder I’m feeling depressed!

I’m scheduled for an MRI on Monday afternoon and will meet with my PA on Tuesday morning, and I’m scared of what the MRI might show. I know I can’t change it be worrying, but I’m still afraid that there could be metastasis to the brain or spine. But it could just be a pinched nerve. I’ve had that before, but it’s never been this bad or lasted this long. I can only wait now, and nap, and keep taking ibuprofen, and hope that whatever the problem is with my hand it will be resolved before the end of the month so I can complete my 50,000 word novel.

So what does this have to do with wishes? I wish I didn’t have this problem with my hand and my foot; I wish I didn’t have to worry about the MRI and metastases; I wish I wasn’t depressed. The wish list is almost endless. But as my mom used to say, if wishes were horses then beggars would ride. I can’t make wishes come true, but i can be patient.

Onward and upward.