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.

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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.

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.