Is this getting easier?

Someone once told me that the first round of chemotherapy is often the worst. That the nausea and general blahs and blechs that come with veins full of poisons usually persists for a few days at the beginning of a two week round of chemo and then every day is smoother than the last. My first round in December knocked me on my ass, which at the time contained a tumor the size of a small grapefruit. This round has been dramatically different.

I don’t know if it has anything to do with the fact that the main tumor is gone (Thank You Dr. Brown!) or maybe that I sort of knew what to expect, but I haven’t felt nearly as sick this time. Yesterday was a little squeamish, but no worse than, say, stepping off a roller coaster 15 or 20 times. Maybe it just gets easier. Whatever the cause, I am thankful it wasn’t anything like I feared it would be.

One thing for sure is that there is far less stress and anxiety this time. In December, I recall, those hours in the chemo clinic with the IVs dripping frighteningly new and entirely unknown, I was undeniably nervous. I’m sure that contributed to the side effects. This time I felt quite at home in the clinic and was familiar with all the procedures. A much more relaxing day. Almost pleasant.

Even spending the 2 days with the chemo pump attached to my power port was easier this time. I’m getting used to sleeping on my back and not moving around, for one thing. This time I wasn’t nearly as frightened that I would knock the needle loose, spring a leak in some hose or roll over on the bottle and knock it loose. I slept better and feel more rested and confident. All in all, I am becoming a real pro at being a cancer patient. Is that something to be proud of?

I’m feeling well healed from the colon removal surgery. Since I only have 5 feet of my 6 foot colon left, should I be calling it a semi-colon? The wound is healing nicely and even the scar looks good. I can sneeze and cough without pressing a pillow to my abdomen to suppress the pain. I’ve been able to reduce my pain medication and will likely stop the opiates entirely in a week or so.

The only complaint I have is the damn ileostomy. Funny how a replacement asshole can be such a pain in the ass. Mine ejects down on the side instead of on top so if the bag isn’t just perfectly placed stuff gets under the flange and the glue comes loose. I live in constant apprehension of sudden leaks. It’s a bit like having potential diarrhea all the time. I’m developing a tic. My fingertips explore the edges of the flange without any conscious thought. I’ll even wake in the night and realise I am checking for leaks. We’ve lost half a dozen of these expensive little bags too early now. Things could be a hell of a lot worse, but still, this can’t continue.

Wendy The Amazing called the store that sells this stoma stuff and told them about our troubles. They’ve put us in touch with a manufacturer’s “New Customer Program” and they are sending us a variety of sample products they think might help. They also sent a box of better bags and an invoice for another 200 bucks. Very helpful. I think a better solution would be to convince Dr. Brown to reverse the ileostomy early but we’ll see how the new bags work in the meantime.

I’ve got a “two birds with one stone” idea that I want to toss out there and see what you all think. There has been a lot of encouraging talk about turning this blog into a book. I’ve always loved writing and have been thinking seriously about beginning that process.

At the same time, Wendy and I are approaching crisis point financially. With our income slashed and expenses increased we’ve been steadily going into debt to maintain our extravagant lifestyle. Last month we reached the limit of or credit cards, lines and overdrafts. I need to find a way to produce some income again. So here’s my idea.

If there is any merit to the belief that my ramblings can become a useful and meaningful book, then people other than my friends and family should be able to see it. I’m told that there are various crowdfunding sites where writers can find financial support for worthy projects. Could this be one? I know almost nothing about crowdfunding. Is there anyone reading this who is an expert or knows one? I could sure use some help with this.

Stay healthy my friends. Even in Canada getting sick is expensive.


Here comes the chemo again

Its been a week again since I’ve written anything. Yet I still don’t know what I have to say. My thoughts and feelings range broadly and I’m up and down like a committed bipolar. If these pages are meant to be anything like cathartic release I had better start paying them more attention.

There is very little to report on the health condition front. We are slowly getting used to living with the constant threat of a burst or leaking ileostomy bag. I think we’ve been lucky so far. There have been a few sudden leaks as the skin patch became unstuck in the middle of the night but nothing as messy or disastrous as I imagine possible. I have learned to half-sleep with one hand on my abdomen always alert for the slightest dampness.

I love my sleep. I have never been shy of naps. Lately I feel like the next sleep is all I look forward to. I move from the bed to the sofa and can’t wait to go back to bed. Sure, I go for short walks around the block or down the hill to the mailboxes, but it still seems like my life is all television and waiting to sleep. I need something to do. Something productive.

While I was trying to decide what to write next, Wendy called to tell me she just got off the phone with the Cancer Clinic. We will be starting the first of five or six rounds of the heavy duty chemotherapy on Friday. Be careful what you wish for. I wanted something to occupy my time. Well, I guess I’ll have that.

I’m going to go call the liver surgeon’s office and let them know we are starting chemo again. They wanted to have a CT scan done first so there is something to measure against in a couple of months to see if the cancer is responding to the drugs. Hey! Something productive to do!

I’ll try to be a better correspondent. Thank you all for your patience with the patient.