Just When I Was Starting To Feel Better

Well, it's the day before treatment #5 (of 12). Some of the side effects lasted a little longer this time so it took well into my "off" week before I started feeling any better. Again, even now I don't feel "great" or even "fine" (my response to the "How are you?" question is usually "I'm hanging in there," or "I'm managing."). This is about the best I can expect to feel. Though I know side effects can be cumulative, I'm hoping that my body adjusts more to them so that I can at least return to the level I'm currently at by the end of each cycle. I thought I would follow my wife Cyndy's lead and make this blog a little more educational. Now unless you have had cancer and chemotherapy treatment (and hopefully none of you out there have), the only side effect you may know of from chemotherapy is hair loss. Now there are lots of different chemo drugs out there and they each have their own side effects so it's not like they're all the same. But I think most chemo patients can relate to the fact that they are dealing with unpleasant and undesired side effects, whatever they may be. You can only hope and expect that the drugs are otherwise doing their job of killing cancer cells. Anyway, I thought it might be educational if I shared what I have to deal with each cycle this time around. This treatment is a little different than the last time, when I had two of the same drugs but a different third drug, and did not have two of the other other drugs with which I am currently being treated. I get 4 different drugs each cycle. I wrote down a list of all of the side effects of what I have had to deal with just so you have an idea of what it's like. I hasten to add I do NOT have all of these effects all of the time during every cycle. But over the course of my treatment, I have had to deal with all of these. Here they are:

• Chest pain (now every Tuesday after treatment. The doctors get a little panicky over this and want me to see a cardiologist because they think it's heart-related. I disagree, as I previously passed a heart test for this with flying colors. I think it may be either muscle or nerve-related.)


• Hiccups (every Tuesday - they tend to precede the chest pain)


• Extra solid stool (as one with a colostomy bag, I won't even begin to explain the issues this can cause or the problems I have had. Suffice it say I have survived them all.)


• Bloody nose (not dripping, but it bleeds internally in my nostrils and then dries. It's a mess when I blow my nose to clear all the mucus - have stained several towels just wiping my face off.)


• Bloody stoma (only happened once and dripped all over the shower. Internal bleeding, including my nose, is one of the effects of one of the drugs so I am very careful about this.)


• Frequent headaches (not migranes or anything and normally some Tylenol takes care of it. But early on I was getting them 3-4 times a day and I rarely get headaches. However, since that time I have been getting chiropractic treatments twice a week and my headaches have significantly reduced and I am crediting that treatment for the improvement.)


• Loss of equilibrium (only happened once, right after a treatment and may be related to the headaches, I don't know. The nurse didn't want to let me drive home that day, as she saw stumbling around after getting out of my chair like a drunken sailor on shore leave. I just said I'll be all right once I sit down and I do drive sitting down. Cyndy helped me to my car and I made it home without incident. I wobbled inside and stayed still as much as possible the rest of the evening. Next day I was OK and there's been no recurrence since.)


• Constant ringing in my ears (ever since the above equilibrium incident. It hasn't gone away. I will wait until several weeks after my last treatment to see if this stays with me or goes away with the end of my treatments. If it stays, then I'll look into it more.)


• Loss of appetite in my "on" week (this round of chemo does that to me. I tend to lose weight that week, but despite my best efforts, it tends to return in my "off" week. Very frustrating. I wonder if there are physiological reasons why, such as lower metabolism and/or water retention. In searches I have noted that in some drugs that can happen.)


• Thinning of hair (yes, it's finally happening. Though hair loss was one of my first go-round potential symptoms, I never lost any hair. Not so fortunate this time. I'm losing hair every day, or at least every day I shampoo. It's thinning slowly so I'm wondering which will outlast which - will my hair outlast the chemo or vice versa?)


• Weakening of voice (this also happened to a co-worker cancer patient. As one who has always had a strong voice, this is more than a little frustrating. It's kind of like laryngitis but I can be heard and it doesn't hurt. It tends to regain some strength during my "off" week.)


• Nausea (I have medication for this which which normally takes care of it. It only happens in the "On" week. I keep a big bowl at work in case it's needed. It has been needed at home.)


• Overall weakness (this is not a time for me to compete in any weightlifting events. My strength gets easily sapped.)


• Weaker stamina (related to the weakness in strength is a lower stamina. I'm a big walker but lately when I've tried, I can't go very far without getting exhausted. Even getting ready in the morning takes a lot out of me, one reason I now dislike mornings.)


• Regular stuffiness and sneezing (the chemo kills your white blood cells so my resistance is down in terms of me fighting off cold germs and the like. So I get a lot of stuffy noses, sniff a lot, and have to blow my nose often, though I'm careful because of the bleeding issue.)


• A hard-to-categorize "overall-I-don't-feel-very-good" feeling (how good would you feel if you had all of these symptoms over a short period of time? Again my "I'm feeling the best I can feel" attitude has a significantly lower expectation level now.

Now a skeptic might ask, "How do you know all of these have been caused by the chemo?" A valid question but "Elementary, my dear Watson. Just logical deductions." I have now gone through 19 rounds of chemo from the start of all this. Before any of this started, I had none of the above symptoms (OK, I sniffed occasionally and had a headache once in awhile, but not every day). Then I take the drugs and now I get these symptoms. And during my "off" week, with the exception of the ear ringing (which I will keep an eye on), all of these symptoms go away, only to return with the next treatment. So based upon these observations, I'm just saying that there's a correlation. Oh, and also, the listed side effects for the drugs I'm on include many of the things I'm experiencing and the less frequent ones are still possible, as I will attest.

I am fortunate that only two of the above side effects (chest pain and headaches) are painful in any way. All of the others are primarily annoyances. So from that perspective, I know I am quite fortunate compared to many chemo patients. If I lose all my hair, I lose my hair. I know it will grow back (I have great "hair' genes). I don't list all of these symptoms to complain about my plight or even to elicit sympathy. I just wanted to share that as a cancer patient on chemo treatment, this is what I personally have to deal with in my fight against cancer and insuring that all cancer within me is eliminated. I have 16 weeks to go so this is far from over, but I know I'll make it. I just have to be patient

One other thing. At the beginning I was reading the likely and the less likely side effects of all the drugs I'm on and one of them side there was a 5% chance of death. I read that and went "Whoa. You mean something that I'm voluntarily having put in my has a 1 in 20 chance of killing me?" Needless to say that caused some initial concern, but I have certainly seen no evidence that it is physically affecting me in any "long-term" way (and death is rather "long term"). I think I started this process relatively young enough and healthy enough to fight that off.

Thank you for reading this and hopefully you learned something or at least got a little insight into what I go through. Maybe you know of someone who is battling this and this might give you a little idea of what they're going through, rather than just general "unpleasantness." I wouldn't wish this on anybody and no one will be happier than me when it's over (perhaps Cyndy but it will be close). Just keep me in your thoughts and prayers and God Bless You.