Category Archives: Chemo Side-Effects

I may have spoken too soon

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I feel sort of guilty about yesterday’s blog post. Well, maybe not guilty, but I certainly feel like I’m not painting the whole picture. You see, yesterday’s post was written on Saturday, and when I wrote it on Saturday, I didn’t know that Sunday was coming.

I almost hate to use the phrase, but the only way to put it would be that Sunday was a “bad day.” At least I hope it was, because if wasn’t then that means that the worst from Wednesday’s treatment is not behind me.

The story of Sunday is still a story of the mouth sores. SO TERRIBLE! When they woke me up in early in the morning we knew that it was going to be a serious problem. Christine called the 24 nurse hot-line to see if there if there was anything that they suggested. Oddly enough there wasn’t much available in their database of knowledge. Whoever Christine spoke to even admitted that she was surprised that there wasn’t much info available, other than it’s an expected side-effect and isn’t something that should be of great concern. I get the feeling that while mouth sores are a common side-effect of chemo, the debilitating intensity with which I was experiencing them might just be my own trademark experience.

The nurse on the phone was able to offer us some help, and after a quick trip to the 24 hour Pharmacy at the hospital, Christine came home with a prescription mouth rinse. It was described to her as Maylox-Benadryl-Lidocane mixture. Shake-well, add some water, swish it up and you should be good to go within 20 minutes.  The taste wasn’t too bad, and it did do the job for a while. The key ingredient is the lidocane, which is the same numbing agent that dentists use orally to numb the injection site before administering novocaine. So yeah, it tastes like that.

It worked for a while throughout the day, but by mid-day even with the rinse I couldn’t eat or drink anything. Even water made my mouth burn so much that I couldn’t drink it anymore.

My family was over for the day on Sunday which was great! But I was generally unavailable to them as I was on the couch just trying to ignore the discomfort I was in. Later in the evening Christine and I went for a walk around the block to get out of the house and I broke down a bit. I was weak from the treatment and weak from not really being able to eat and it was just one of those little moments that I had “prophesied” about earlier in the week. I was living a vision of what the next 8 months of my life are possibly going to be like and I cried as we walked around the block together.

By mid-day on Monday I could eat and drink again but it still hurt, but as my mouth slowly got better I began to get a sore throat that even now (on Monday night) it still causing a good deal of discomfort, but at least I can eat now.  My mouth still hurts, but not as much in the burning sores kind of way. It’s still there, but now there is also a dull aching in my teeth and gums. Not really sure what to make of that yet, but now I feel that the worst is over (until next week when I go back to chemo, at least).

Highs… and Lows

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It’s almost too easy to talk about this journey as a series of highs and lows. Today was a perfect example. I got to spend some time with my friends Dane and Jessica (the High) but I ended the day feeling pretty low (the Low).

I sort of touched on  how I’ve been feeling in yesterday’s post, but I want to expand upon it today. As an overall, I haven’t felt too terribly bad during this latest round of chemo, but what’s been slowly wearing on me is the fact that I haven’t felt good either. I’ve just kind of felt sick for the last week. Not in an unbearable way, but its like its lingering just under the surface and won’t go away. It hasn’t prevented me from doing anything, but its just been a constant presence for the last week.

It actually started on Wednesday, the day we went in for chemo again. I was okay in the morning, but the nearer we got to our chemo appointment the worse I started feeling. By the time Tanya picked us up and we were on our way I was feeling genuinely nauseous. Even now thinking about it again I am starting to make myself a little ill. The nurse told me that I was basically describing “anticipatory nausea.” It’s basically what it sounds like. I know what I’m on my way to do. I don’t want to go. I know how it’s going to make me feel, and my body starts to react in anticipation.

It’s been almost a full week now, and that feeling has remained, like I said, just below the surface. Never really showing itself but at the same time never really going away. After a week it’s really starting to wear me down. My fear is that this is the real manifestation of continued treatment and that my body is starting to lose ground against the chemo drugs. When I talk about with people I describe it as diminishing returns, that with each subsequent treatment I am not quite able to get all way back up to a baseline level before I have to go back in and get another round of chemo. I’m scared that this feeling is going to get worse as the months progress and that eventually it won’t go away at all.

Also on my mind today is a friend who lost his father to cancer today. It was not unexpected, but I can’t help but feel the loss and take a moment to reflect on how much cancer sucks. I only met him once, but he was such a sweet man and he did have a lasting impact on me: to this day the image of him dancing with his wife at his son’s wedding knowing that he was terminally ill was one of the most touching moments I’ve ever see in my life. It brings tears to my eyes even thinking about it now. I know that our cancers were different, and that our journeys have little in common save for the  “c word” itself. But none the less, in the short time that I’ve lived with my own cancer I’ve felt an increasing connection and understanding with others who have lived, and who continue to live, with cancer in their lives.

Anyway, a lot on my mind tonight, and as such I’m feeling pretty blah. Christine has been amazing though. She worked all day and then came home and is now decorating the tree and hanging up the stockings while I lay here and type this. It just looks so beautiful.

Like I said, it’s a journey of highs and lows.

I should go, Christine just threw an entire glass of wine on the cat.

Getting Huge

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Since starting treatment I’ve now put on 30 lbs. 30 lbs! That feels like a bit much.

Unexplained weight loss was one of the original symptoms that took me the doctor in the first place, and then in the weeks leading up to my first chemo appointment I continued to drop weight at an alarming rate. At one point I weighed in at 130 lbs. I’m 5’11… That’s a BMI of 18, putting me in the “Underweight” category. So the doctors told me to eat pretty much whatever I wanted and work towards putting on weight. Well I did. And now I feel a bit out of control and HUGE at 160 lbs.

I’m hoping to be able to change this trend, but I have several things going against me. For starters, one of the medications that I take to control nausea is a type of steroid (dexamethasone) that is also an appetite stimulant, so for several days after chemo I tend to eat and snack all day. Once that medication wears off after a few days (I only take it for 2 days after chemo) I’ve started to encounter another problem. One of the new side effects that I’ve begun to experience is a constant metallic taste in my mouth. It’s a fairly common side effect, and from what I understand it can get so extreme for some people that everything starts to taste like metal and they have to start using plastic silverware because they then can’t handle having metallic utensils in their mouth on top of the metallic tasting everything. I haven’t gotten there yet, but lately around days 4-7 I have a nasty metal taste in mouth.

So, how do I combat it? Yep, by eating. It’s the only way I’ve found to get rid of that nasty taste in my mouth, by replacing it with actual tastes. And the effects are only temporary, but worth it. So I continue to eat alot and snack all day because I always have a gross taste in my mouth that I’m trying to get rid of. It’s either eat something delicious, or feel like I’m sucking on a piece of aluminum.

At the very least I’m hoping that the exercise I’m bringing back into my life will help hold off additional pounds as I don’t see myself stepping down on my food consumption, given the facts. I’ve been getting to the gym a couple of days a week and have been trying to get out for a long walk with the dog every day.
Ideally I would love to get back down to my normal 145-150 range, but realistically I don’t think that’s going to happen until after I finish treatment. Until then, I guess I’ll just have to embrace the new pudgy Brian. More of me to love I guess.

“Your alarm has been disabled”

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At dinner last night I was reminded again about how my tasted are muted by chemotherapy. It’s been the unofficial theme for the week so I thought I would share another anecdote.

We had tickets to the Symphony to hear Handel’s Messiah, and we did dinner beforehand at one of our favorite downtown restaurants. We did what we usually do and just ordered 4 or 5 items off of their amazing Happy Hour menu to share. After we had been eating for a while I started to feel a little odd. I was feeling burpy/gassy and I realized that my stomach and esophagus were hot and burny as though I had been doing shots of whiskey all night. I mentioned the odd sensation to Christine who sort of gave me a “Well, yeah!” look and pointed to one of the three delicious sauces that came with our order of Rustic Cut Sweet Potato Fries. According to her I had pretty much been dipping my fries in liquid fire all night. She herself had taken a dip into that sauce a few times and was still suffering a bit from it 20 minutes later. Me, I had no idea. I ate it all.

Knowing what the feeling was made it it even weirder. Normally when eating spicy things (or previously, what a normal person would call “Mild”) I feel it first in my mouth, then if I continue to eat more, in my stomach and esophagus. But now apparently I no longer get this sensation in my mouth. As Stine put it: “your mouth is there to protect the rest of you from eating things that are too spicy, but now it looks like your alarm has been disabled.” I would almost describe it similarly to having your mouth numbed by Novocaine. You know that you’re supposed to be feeling something there, but you can’t. The switch has been turn off.

I had mentioned earlier this week that I’ve been eating what I knew to be spicier food than I had previously ever enjoyed, but this was the first time that I really realized how muted my tastes really have become. I had put away an entire bowl of spicy sauce that she could only handle a tiny tiny bit of. And based on that scale I know that I NEVER would have even made through even the first taste of it before going through chemotherapy. I can’t even stress how adverse to spicy foods I used to be. Now would appear that sky’s the limit!

The Voice

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The voice is muscle, and like any muscle if you don’t use it you lose it. Or at least it can quickly get out of shape. I realized this first hand last night when I went in for my first rehearsal for the revival… We actually all met last week for read through, but this was my first time working through a song again in a long time. In fact, as I realized during my first hoarse sing-through, the last time I sang ANYTHING was three-and-a-half months ago when I last sang this same song onstage. It was a bit of a wake-up call.

It will be fine, I just need to be sure and actually use my singing voice a bit more to get it back into shape. That, and you know actually maybe warm-up before going into a rehearsal. When we last did this show in September, I had been working for almost a year straight with no breaks, so my voice was pretty much always in good shape without having warm up or anything.

Everything was raspy, crackly, weak, and I just didn’t feel like I had any control over it. I don’t know why I was so surprised though. Like I said it’s a muscle, I wouldn’t expect to run every day for a year, then stop for 3 months, and then go out for a run and expect the same mile time that I had when I stopped. But for some reason I was still surprised when my voice wasn’t where I thought it was.

I also wonder what effects my chemo treatments have had on my vocal health aside from lack of use. I wouldn’t be surprised if there was something going on there as well. In the past I would Google it. “Chemo” and then whatever possible side effect or ailment I was looking for and it always comes back with a result. I find lately though that I have problems doing that. Its getting harder and harder for me to talk about chemo as I have such negative associations with it that when I start to talk about it or think about it I can feel back in the room, in the chair. It makes my heart sink and my stomach turn.

Along those same lines, just the names of the drugs have power over me. When I’m sitting in the chair and they bring the drugs up, they show them to me and read off the names showing me the labels and verifying that it’s me and that it’s the right drugs. Just the other day I was reading something somewhere I randomly stumbled across the name of one of the drugs they give me, and my body reacted to it. Powerful stuff.

Okay, case and point, I have to stop talking about this now as I’m making myself a little ill. =)