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.

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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.

Depression

Depression is a strange creature. It can come out of nowhere, take the wind out of my sails, slam into me knocking me off my feet, and then disappear as fast as it appeared. There are days when I don’t want to even get out of bed. Those are the days I’m glad we have the furbabies, because I am responsible for their breakfast while my partner is up on the roof. Then he gives them dinner. I wake up each morning to a little furry body curled closely into mine and another one at my feet. What a wonderful way to wake up!

Today, I had to drag myself out of the house to the gym; the last time I went was a week ago. I knew I would feel better if I went, but the chemo knocked me on my butt last week, and I couldn’t shake the fatigue. I told myself yesterday that I needed to go, but could not overcome the inertia to even get dressed until mid-afternoon. Chemo causes fatigue, and feeling fatigued makes me feel overwhelmed, and that makes me feel depressed.

So today I did go to the gym for the cardio workout class. I felt pooped but energized afterwards – if that makes sense. And I think the last of the fatigue and depression are gone for now, so I expect to feel good for another two weeks.

My oncologist had mentioned on the last visit that he thought I might qualify for a clinical trial up in Phoenix, but then said maybe we should wait for the next CT scan in 3 months. But then on Friday I received a call saying I should set up an appointment to meet with the clinical trial people. So tomorrow we will drive to Phoenix to meet with them. It’s a 90 minute drive give or take depending on the traffic, and all interstate. I’m so glad we have a newish vehicle to go in! So today we topped up the tires, the fluids, and gas, and will embark on a new adventure. I don’t know if I will qualify for the trial, and I really don’t know much about the trial so we both have lots of questions. I hope the trip will be worth it. 

A New Normal?

I have been feeling off for the last couple of days; I just could not stay awake so took lots of naps. And I’ve been a little loopy; dropping things, unsteady, hungry all the time, upset GI system. Then it dawned on me – it’s the chemo stupid!! Since I have chemo only every 3 weeks now, I feel so good most of the time that when I don’t feel good, I forget what’s causing it. One of the side effects of the Pemetrexed (Alimta) I’m getting is severe fatigue, so yeah, I felt like I had to sleep a lot. Combine that with the GI symptoms (and I won’t go into details on that one!), and yeah, I’m going to feel crappy for a day or two. I should have it figured out by now that by the end of Friday of the week I get my infusion, I’m going to feel like crap. Now I have it figured out – until the next time.

The scheduler at my oncologist’s office called me Friday to set up a CT scan for my next visit, and to assure me that my PA had talked to my oncologist and they knew I was concerned about the increase in the CEA level, and that’s why they scheduled another CT scan to get a sense of what’s going on. I will meet with the oncologist right after the CT scan so there won’t be a wait before getting the results. I will also have my CEA level checked the Friday before my Tuesday appointment so we can discuss that at the appointment, too, and not have to wait until a day or two later to get the results. I wish there were a faster, better way to see what’s going on without having to wait to have tests, and then having to wait to get the results. I find the further into this journey I get, the more impatient i get. 

I also think I need to stop researching clinical trials and treatments. I normally like to be prepared, but I think I’m overloading myself and confusing myself about the options available. So I think I need to take a break for a while. And I need to get back to focusing on my writing; I have sorely neglected my stories for quite a while. What brought this home to me is a couple of new followers on my fiction blog; I haven’t added anything to it in over a year. Time to get in gear and write!

 

Life Defined by Cancer

For the last week or so, I have woken up during the night with hiccups. I have no idea why. Last night was particularly bad, though, as I woke up every hour or so. But during one of those ‘awake’ moments, I had a realization; for the past four months, my life has been defined by my cancer.

Most of my waking moments have been spent dealing with things having to do with cancer; insurance companies, appointments, chemotherapy, chemo side effects, and on and on. Fatigue and other side effects have severely curtailed the activities I thought I would be enjoying in my retirement. I spend time reading blogs of other cancer patients; reading research papers; looking for more promising research. And I have decided that I’m sick of allowing cancer to define my life. I feel as if I’m waking up from a dazed existence that began with those fateful words, ‘you have cancer’, and have continued ever since. No more. I’m taking back my life – I should have done this a while ago but needed the realization of what’s happening to be able to redefine myself.

Cancer isn’t disappearing from my life any time soon. It will always be there in some form, even when I show no evidence of disease. Cancer is insidious and can reappear at any time, or spread somewhere else. What matters now is that I intend to enjoy life more and put cancer on the back burner for now. I will deal with it as I have to, but I no longer want it to define me; I will define it. I have to make some allowances for fatigue, chemo brain, nausea, etc., but I will no longer make them my focus. They are there and will be there for a while. My focus is now on me and my life and my activities. I’m outlining my days based on what I wanted to do for my retirement regardless of what else is going on. I will write. I will go out and take pictures. I will play with our dogs. I will spend time with my partner. I will work in the yard and enjoy my flowers – when I have them. I will define my own life.

 

Fatigue

Chemo went well today, although there was a moment of panic when no blood was being pulled out of the port; that’s never a good thing. But fortunately it worked on the 2nd try. The site is still tender and poking it more than once with a needle isn’t fun! So the infusions went well and only took about 4 hours.

The main side effect I seem to be having is bone-crushing fatigue. Consequently, my treatment team strongly suggested that I not go to work for the rest of this year and they will re-evaluate in early January. I was only putting in a couple of hours a day at most, because that’s all I could handle. But they are concerned that those hours will deplete my strength even more, and I need my strength to fight off this dreadful disease. (I would much rather be at work than having to fight cancer! But I don’t have a choice.) So I’m hoping my disability policy I’ve been paying on for a year and a half will pay out like they’re supposed to. And of course now I wish I had paid a little more and bought the cancer policy – but hindsight is always 20-20 isn’t it?

So I’m spending my days reading, writing, napping, and playing on the computer. And when I feel up to it, venturing outside the house to the store or to take pictures. Being out in nature is rejuvenating, so I try to at least sit on the back patio for a little while each day for fresh air and sunshine.

My hair is continuing to thin but isn’t falling out in chunks yet – I’ve been told it will. Oh, joy! But I’m prepared, at least physically with hats and scarves and a possible wig. Mentally, I’m not sure one can be prepared for that sort of thing. I admire those women who can go out with bald heads uncovered, and who knows, maybe I will reach that point, too. Because we all know that ‘bald is beautiful’, right?

Reflections

I am tired tonight. I went to work for a few hours and accomplished quite a bit. Stopped on the way home to  pick up a couple of things. My partner has been doing a fantastic job in keeping things together and running smoothly, but I know this has hit him hard. His only comment has been that he thought he would be the one going through the cancer and chemo stuff because of all his years of smoking and working around chemicals. He has never been one to show emotion – it’s hard for him. But there are times I wish he would. He has a few close friends that he has lunch with regularly, and maybe that’s all he needs.

But there are times like now when I want to cry and scream and punch something. For the times we should have together and may not. I try to stay positive, but even that gets worn out. Especially when I’m tired, or sick, or hurting. And I know this will pass.

On a positive note, the follow up visit went well. My labs are holding steady. They won’t recheck tumor markers until after the 2nd treatment in 2 weeks. I’m anxious to know whether the treatments are working. The side effects from one are too severe, so they will switch that one to something else.

I think I’m too tired to write much tonight. Tomorrow I have the chemo port installed so will have more time.

Good night, dear friends.