Seventeen Days After Whole Brain Radiation

There is a light at the end of the tunnel, and it isn’t a train! I have cut down to one pain patch, and am feeling a little more ‘awake’ and not foggy or dopey. Steve says my brain seems to be functioning closer to normal instead of being in a fog. The tradeoff is that my throat still hurts when I swallow, but it isn’t as bad as it was. I’m currently existing on a diet of soup and soda. We don’t normally drink soda, but desperate times call for desperate measures. Virgil’s orange cream soda seems to really help. It isn’t super fizzy, and tastes good. I’ve been drinking it at room temperature and it doesn’t hurt going down. And I’m still managing to drink my coffee.

We have switched my meds, so that the anti-nausea med is a quick-dissolve-on-the-tongue – no swallowing required. My pain med is now a tiny one that isn’t going to scrape my throat going down. My feet and ankles aren’t hurting, and neither are they swollen. I only needed half the hydration on Thursday, and none yesterday. My PA left it up to me as to whether I thought I needed it today, and I don’t. I think I’m eating (I was able to eat mashed boiled eggs for breakfast!) and drinking enough that I don’t need any supplemental hydration today. And I’m feeling better. I can still nod off at the computer, but that will improve once I don’t need the pain patch. I don’t feel like I’m 80 – maybe 70 – and I’m steadier on my feet.

My eyesight is still off, but I don’t think I can do anything about that until everything else is back to normal. It makes it difficult to read and to write, especially since my fingers aren’t cooperating either. The sores on my scalp are healing. And since I’m feeling better, I might venture out for some shopping.

I know I’m not 100% better yet, and may not be for some time. But I’m getting there. And I have a PET scan scheduled for Monday.

Onward and Upward.

Eleven Days After Whole Brain Radiation

I want to go to sleep and not wake up until all my symptoms are gone. But I guess that’s unrealistic. My throat isn’t any better in spite of the meds and home remedies. And I’m still starting the day with vomiting, which isn’t a great way to start the day. It doesn’t help my raw throat much, either. My throat is still congested; I still sound like a frog; my ears still feel as if they’re going to explode, and I still get esophageal spasms every time I swallow. The spasms extend from my throat into my Eustachian tubes. Eating or drinking anything takes forever. I swallow, wait 5 or 10 minutes for the spasm to stop, swallow some more, wait 5 or 10 minutes, and repeat. So it takes a long time to eat, and it’s exhausting.

I’m developing sores on my neck and scalp. And they itch. I’m trying not to scratch, because the last thing I need is an infection on my skin. I clean gently, pat dry, then liberally apply pure Shea Butter. So far, I have no mouth sores. There are sore spots inside my ears and nostrils; they get the same Shea Butter treatment, and that seems to help.

I’m having no trouble sleeping. I think it’s my body’s way of giving me respite from not being able to swallow, and the spasms.

My eyes have become super dry. And my vision is a little off, especially at the end of the day. I haven’t even worn my contact lenses for a week, because I just couldn’t read with them. I can read with my glasses, but even then I sometimes have to strain to really see. We live in a desert, and my aging eyes are dry anyway, but this feels different.

I’m not feeling very steady and find myself shuffling around like those ancient men and women you see in nursing homes. They’re shuffling along with walkers, or hanging on to the wall rails, or pushing their wheelchairs along with their feet.

On a lighter note; I tried to take a bath a couple of days ago, thinking it would help me feel better. I totally didn’t take into account how low down the bathtub is, how inflexible I’ve become, and how hard it might be to get in and out of the tub. It was basically a comedy of errors. It took 10 minutes for me to figure out how to get in, turn around, and sit down, without dropping on my butt hard enough to break my tailbone. I managed it. But in the process, I somehow opened the drain, and all that lovely hot water infused with bath salts disappeared down the drain in no time. So then I had to figure out how to hoist myself up, close the drain, and get more hot water into the tub. And then I had to figure out how to lower myself back into the water without splashing all of it out of the tub and all over the bathroom floor.

Spud came into the bathroom once to see what I was doing. He gave me one of those ‘you’re-a-crazy-human-and-I-want-nothing-to-do-with-you’ looks and plopped himself down in the doorway to watch the fun. I can’t blame him – it was pretty funny.

So then I had to figure out how to get myself into a standing position. The only way I could do that was turn myself over so I was on all fours – and that took a few minutes. Spud sat in the doorway with a concerned look on his face, but I know he was snickering at me. At one point he left, and I thought perhaps he had gone to get Steve for help. But nooo. He went to get Peanut, and they both sat in the doorway snickering.

I finally managed to turn myself over and stand up. And I decided then and there NO MORE BATHS! Until we win the lottery and can get one of those walk-in bathtubs. Or until I can work on losing weight and working on my flexibility.

It’s okay. You can laugh. You know you want to. I would be laughing, but it hurts my throat.

Onward and Upward.

WBR Progress (?) Report

Today is day 7 after the last radiation treatment, and some new symptoms are appearing, and some other symptoms are continuing. The worst is the painful swallowing. I’m getting tired of soups and pureed food. But I know if I try to swallow real whole food, I will be screaming in a couple of seconds. I’ll just have to be patient.

We met with my PA yesterday (Tuesday). She told me I had ‘sunburn’ inside my ears and nostrils. Which would explain the soreness and itching. So far there is no blistering on my scalp or in my mouth. The back of my neck is quite red, though, with a couple of spots that look like they could turn into blisters. The inside of my mouth doesn’t have any ulcers or sore spots at the moment. She recommended I go back on the Dexamethasone for a few more doses as I was feeling so rotten yesterday. So I had an IV infusion of the Dexamethasone, and it did help. So now I will take 1/2 tablet every other day for three doses, and then I’ll stop.

Today my throat is much more painful. And then I had a bout of nausea and vomiting, which scraped my throat even more raw than it already is. I should have know better and put something more in my stomach before I took the Vicodan. But in my defense, I was desperate for some relief from the pain. I don’t think I’ll do that again! So for now, I’m managing to keep the worst of the pain at bay by using the Lidocaine-Maalox-Benadryl combo the pharmacy mixed up, and the Chloraseptic throat lozenges. Between those two, my throat is eased enough that I can at least swallow without wanting to cry.

I’m not as unsteady as I was, so that’s a plus, and the fatigue has eased up a bit. The skin on my face and neck is extremely dry, and my eyes are drier, too. My vision is a little ‘off’, and I’ve developed some interesting-looking floaters. I’ve had those before, and they’re usually little black spots that soar up and down in my field of vision. But there are a couple that look like little wormy shapes and don’t have a set path but just wander all over. I’m making an effort to remember to put in my eye drops that I was using before. My contact lenses aren’t working as well as they were, so I’ll just have to wait that out and see what happens. I think the chemo changed my vision a little, and the radiation has changed it some more. I’m not due for an eye check until April or May, so maybe by then, my eyes will have settled a bit.

Then there’s the roaring in my ears. It’s not ringing, but sometimes a high-pitched whistle that sounds like a whistling kettle, and sometimes a roaring sound as if there’s a waterfall rushing along in the next room. My hearing seems to be as acute as it ever was, so I’m not worried about that too much right now.

My left hand is almost back to normal, as best I can tell. There is still some weakness on that side according to my PA. I’m encouraged that my hand is better, because it means the tumor is no longer pressing on the ulnar nerve. And by extrapolation, I’m guessing that the brain tumors are shrinking, too.

I’m scheduled for a PET scan in 2 weeks, and then an MRI of the brain 3 weeks after that. And then we’ll re-evaluate to see where we are and how to get to where we need to be.

Onward and Upward.

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!!