Side Effects

Side effects are pretty much a no-brainer going into the war / battle against cancer. When I was diagnosed with stage 3c colorectal cancer I had three options presented to me with regards to chemotherapy and radiation treatments.

In order to shrink up the massive tumor surrounding my rectal column I was told that the best way to approach it and to give me the best chances for a successful extraction was to do six weeks of daily chemotherapy and radiation treatments.

So naturally I chose to go that route. But the first thing I ran up against was the costs involved with the [oral] chemotherapy drug, Capecitabine (Xeloda). It was NOT covered by insurance but my insurance company helped negotiate the price down to a “reasonable” amount that I still couldn’t afford but hey, whaddya gonna do?

So basically my out of pocket costs were around $500 per round (14 days) so if you do the math, I did 14 days on and 7 days off for six weeks, every day, three times a day…..totaling around $1000 after the pre-surgical chemo and then approximately $4000 after six months of post-surgical chemo.

The only side-effects I had with the Xeloda was my gut (stomach) feeling like someone kicked my abdomen right after taking it. Three days in, I had some waffles and fresh fruit (strawberries, blueberries, cantaloupe and bananas) for breakfast.

I then sat on the couch, readied myself for the kick in the gut and, took my Xeloda…and waited, and waited, and waited. Nothing, no kick in the gut and no sickness. Hmmmmm

Later that day I was getting ready for dinner but was not all that hungry. So basically I made a strawberry jam sandwich and then headed to the couch for the kick of death (Xeloda dose). I readied myself again and, nothing, nada, no kick and no sickness. Hmmmmmm

My wife asked if it had something to do with the fact that I had strawberries for breakfast and dinner. Hmmmm. No clue so, the next morning I gave it a go with NO strawberries and BAM, got the kick in the gut and got sick as hell…..luckily I took some Zofran just in time to prevent puking up the hugely expensive Xeloda pills.

So for lunch, I took the strawberries right before the Xeloda and once again, no kick in the gut and no sickness. Hmmmm. So apparently the strawberries (by sheer accident) are my miricle cure for the chemo sickness.

So I contacted my oncologist about this weird occurrence as I was afraid that the strawberries were counteracting the Xeloda because I was equating the pain and sickness with, it’s working so….no pain, no gain??

Luckily she laughed and said she never heard of this before and was gonna mention it to some other patients who were suffering from the oral chemo. But she did say that there was NO way that the strawberries were countering the drugs…..those chemicals are the same chemicals regardless of what you eat…..so, have at it and, enjoy!

So, needless to say, I made it through the six weeks of chemo just fine and as for the radiation treatments, I began those at the same time as the chemo and was told I would burn quite a bit and was given all kinds of lotions and whatnot….however, day after day, week after week, I never burned and all they could say was, well, it’s coming, it’s coming.

Well, it never did and I never had any kind of reaction or burning. Hmmm, the strawberries maybe?? Well, I did have some issues urinating but they said that was normal and that it would get better in a few weeks. It never did but, that’s a story for a different paragraph below.

So basically I went through chemo and radiation with almost NO side-effects and was looking forward to my upcoming robotic LAR (low antirior resection) surgery to remove the shrunken up tumor and fried lymph nodes.

So the surgery came and went and everything was a success. I went from being staged at a stage 4 colorectal cancer with 6-9 months to live to, a stage 3c colorectal cancer and a pretty good shot at beating cancer.

So then came the six months of “clean up” chemo therapy of CAPEOX which is Capecitabine (the oral chemo again) and Oxaliplatin (IV chemo) and this was meant to catch and kill any stray cancer cells floating around that the surgeon obviously couldn’t remove.

So I chose this cocktail-o-death because it had a very high success rate of 91%. However…….it comes at a cost. Mainly massive nerve damage (neuropathy) to your hands and feet. For me, it was the tongue, hands, bladder and feet. I stopped after the 5th infusion due to the massive nerve damage I was experiencing.

The tongue is now back to normal and I can taste food again (took a year) and my hands are about 80% of what they once were. My bladder (and it could be that the chemo and radiation also had an affect) is still pretty bad (year and a half later) and my feet are the worst. I use a cane to walk because it helps take some of the pressure off of walking. But hey, at least I can walk right? Apparently there are those who went through the entire Oxaliplatin regimen and ended up in a wheelchair because they can no longer walk.

Aside from from all this, there are numerous other side-effects that I didn’t have going in that I now suffer from.

So, chronic pain (back, legs, bladder, hand joints, and the feet) are the biggest ones. Loss of my finger prints (no big deal – they are coming back slowly) is a weird one.

Horrible short term memory is pretty annoying. I will get up for example, and go to the kitchen for a drink of water but upon arriving in the kitchen, I will have no idea what I’m doing in the kitchen or how I got there.

Not being able to take a piss is also quite annoying. Apparently I will hold it in and when I get to the toilet, my brain can’t get the signal through to the bladder muscles to release the urine. I will eventually go but, it will take gravity and a slowly releasing bladder ten minutes or so…..a kind of “stop and go”, “stop and go” type of experience.

And of course the BIGGIE is the newly fashioned plumbing. And I totally knew this was coming so it was no surprise to me (after the ileostomy reversal surgery) when I had to re-train myself to use the toilet. Luckily there was enough rectum left over to attach the colon but, the only muscle left that could be used to stop the poo from coming out (sweeeeet) but, I can’t use it to push out the poo. Sorry, I know, too much info right? LOL But hey, thet’s the reality here folks…..it is/was colorectal cancer we’re talking about.

So anyway, the side effects associated with the colorectal surgery is basically, anal spasms, pain at the reversal spot and having to allow gravity to, do it’s thing.

SO…..at any rate, don’t get me wrong, I am TOTALLY cool with having to deal with all these horrible side-effects on a daily basis for one reason…..and one reason only, I wake up each and every morning.

Since the alternative is/was DEATH, I find it almost impossible to complain about the side effects. Waking up each morning to enjoy the view out my bedroom window, seeing (and hugging) my wife and family and, AND, having that morning cup-of-joe makes it all worth it.

So that’s it…..how about you? What was your diagnosis? What pre/post-surgical chemo / radiation treatments did you go through? And……what side-effects do YOU suffer from (if any) and what are you doing about it?

For me, pain meds and gabapentin do the trick but, I can’t be on these things forever. And, insurance wont pay for medical MJ so…I’m in search of an alternative that can be migrated to in a safe and effective manner.

Welp, hope all is well with you and, have yourself a wonderful day! See ya! –JR