Category Archives: Bad Days

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.

I may be winning the war against cancer…

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… but I’m starting to lose the battle against chemotherapy.

Every time I go in for chemo I am asked the following questions:

Are you having any pain?
Experiencing increased fatigue?
Any shortness of breath?
Coughing?
Numbness or tingling in your extremities?

I always get the feeling that they are looking for something, almost waiting expectantly for me to answer to yes to one of those of those questions. Expecting complications.

I finally had to answer “yes” when we last met with the oncologist on Wednesday. I actually reached out to my doctor regarding shortness of breath about 2 weeks ago. What I first started noticing was that my body was acting like it wasn’t getting enough air. Even if I was just sitting on the couch I’d find an increasing need to to yawn, or take a deep breath from time to time. I also noticed several instances where I would wake myself up in the middle of the night with the need to take a deep breath. My doctor didn’t seem concerned about it at the time, but told me to keep an eye on it.

Over the New Year weekend I started to notice an increase in the “shortness of breath” that I’m asked about every two weeks. I would notice it particularly when getting up and moving around after sitting for a long period of time. I started getting winded pretty easily and then when I would take a deep breath, the last bit of it felt as if I was smoking a cigarette. That’s kind of the only way I know how to describe it. I’ve never been a “smoker”, but I’ve smoked cigarettes in my life, at parties in college or whatnot. That feeling of breathing in smoke when you’re body is expecting air is a very distinct and odd feeling for a non-smoker and over the next couple of days I started to notice it more and more. The slight burning sensation in my lungs, and the feeling that no matter how big a breath I was taking, it didn’t seem to benefit me more than a regular or shallow breath. They felt the same. It’s as if that extra bit of lung capacity isn’t there.

Lung damage, though not common, is not totally unexpected with the treatment course of ABVD chemotherapy that I’m on. It’s the “B” that does it. Bleomycin can attack the lungs and in some cases cause permanent lung damage. It’s too early to speculate that any possible damage done my lungs (if that’s what is happening) at this point is permanent, but it does exist within the realm of possibilities. Again, we are dealing with some seriously potent drugs here.

I don’t think I ever mentioned it here, but before starting this treatment course I was given a lung function test both as a measure of health before starting chemo (to ensure my lungs were healthy enough given these known risk factors) and as a baseline for any possible complications. Later this week I’ll be going in to repeat this test now that I am beginning to show symptoms of possible lung damage. It’s a simple sit here, hold your breath, blow into the tube kind of test. The last time I took it, it was actually pretty tough since I still had a large tumor pressing back on my lungs, but after a few failed attempts to make it through the steps without coughing, I got through it.

As a precaution, I was taken off of the bleomycin for this cycle of treatment. Meaning that they only gave me 3 of 4 drugs that I normally receive every two weeks. After the results of this week’s test they’ll take a look at my lung function and decide if and when to put me back on it. In the mean time I’m just trying to breath normally =) Fortunately I haven’t felt the shortness of breath as acutely when just walking around like I did toward the beginning of last week, but I do still feel it when exert myself. On the plus side, if my lungs are being effected by the drugs I feel that we definitely caught it in the early stages.

I’ve talked about it again and again, but I still have problems wrapping my mind around just how sick the “treatment” for cancer can make one. So once again, if I haven’t made my official position on the subject known, then let me say: if you are ever given the choice between getting cancer and NOT getting cancer, I would advocate for “NOT getting cancer.” If it’s one thing you take away from being a reader of my blog, I hope it’s that!

“Done”

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There is another reason why I keep thinking maybe I’m almost done with this treatment course: I normally feel pretty good during the days leading up to my next chemo appointment since obviously they are they days farthest away from the last chemo appointment. But this week, I don’t just feel pretty good, I’ve felt great.

There are a few possibilities behind this. The first and most likely is that it’s because I’m currently not on the full treatment regimen. If you recall, last month, because I was beginning to show signs of possible lung damage, I was taken off of the bleomycin, leaving me on only 3 of 4 chemo drugs that I would normally be given. I’ve commented a few times over the last month on how the lack of bleomycin seems to have favorable results on the way that I feel, and perhaps and this is just another way that it’s presenting itself.

But then I think there is another possibility. Maybe I’ve felt so great this week because the tumors are gone? Maybe I’m at the point now that that only thing keeping me “sick” is the chemo drugs themselves. If that’s the case, then maybe now that I’m this far away from my last dose I’m starting to feel normal again (for lack of a better term). I’m still not a doctor (you’d think I would be by now, seriously), but it seems to make sense to me.

God, I just can’t get over how great it would be walk out of that office tomorrow knowing that it’s almost over. We are pinning our hopes on some great news today in a serious way. A way that I haven’t allowed myself up until this point. And again, I’m terrified that we are setting ourselves (and everyone) up to be disappointed. That’s one of the reasons that I’ve been so reluctant to talk about it in the first place, but it goes back to my commitment to be honest with myself and really use this blog as a tool to document where I am at both physically and mentally in the process.

So where I am physically and mentally? The answer  is “DONE.” I’m just done with it all. I’m done physically, and I’m done mentally. And now all I can think about is that I hope my oncologist sees it the same way, and that she thinks that I’m “done” medically.

Today I’m either going cry tears of joy, or I’m going to shatter into a million pieces. Either way its going to be a big day.

We’ll keep you posted.