It’s 365 days ATN, 58 days since surgery, and 52 days since being deemed CANCER-FREE.
It’s hard to believe a YEAR has gone by! As a radiologist commented earlier in the week, “You’ve had quite a year!” Diagnostics. Chemo. Chemo-radiation. Surgery. We’re in the home stretch of the journey but still not quite done.
It’s been a while since the last post and things have been relatively uneventful. No trips to the ER. Many challenges but no medical issues with the ostomy. And the reason I saw the radiologist earlier in the week was for a barium enema – which will indicate if things have healed and the ileostomy can be reversed. So hopefully that surgery is in the not-too-distant future.
There are a lot of things I could write about, such as The Case Of The Incredible Shrinking Stoma and Advanced Ostomy Pouch Failure Modes, but as fitting for a one year anniversary post this one will be more reflective…
Those of you who’ve followed along know that the pre-surgery MRI showed that the tumor was no longer visible in the scan. (I should also point out that the MRI was done the morning of April 1 and the results were delivered late that morning. Buildings don’t have 13th floors. At least in the US. In Japan its the 4th floor that’s missing. Why are elective scans being done on April 1?) But as the surgeon pointed out it didn’t mean I was cancer free – it just meant that any cancerous tissue was too small to resolve on the MRI. It isn’t uncommon for there to still be some cancerous cells lying around. Which is why we went ahead with surgery…
About a week after the surgery the pathology from the removed tissue came back. The lymph nodes were clear. The margins were clear. There was a tiny spot of cancerous cells where the tumor used to be, but that was out now. So did that mean I was cancer free? I didn’t want to assume anything. They say that doctors can be a bit superstitious and prefer not to play up positive outcomes for fear of jinxing things. I have to say I was having a similar reaction to the pathology report.
I asked the surgeon when I saw him a week later and he said it was great news and it was the best that could have been hoped for. And he was glad we got that tiny speck of cancerous tissue out. I still wanted to hear what my medical oncologist had to say. So when I saw her about a month later I asked and she said rather emphatically, “Yes [you’re cancer-free]! And you’re going to stay that way!”
…but not quite journey’s end
So I may be as cancer-free as can be hoped but the journey’s not over. There’s a surgery coming up to reverse the ileostomy and then there’s all the “fine tuning” to be done afterwards. And there are still lingering side-effects from the last year’s chemo and chemo-radiation. The primary side-effect is peripheral neuropathy. In my case this is numbness and sometimes a pins-and-needles feeling in my hands and feet. It does affect day-to-day life and for a while I had a lot of difficulty typing. Fortunately my hands seem to have re-trained themselves to not being able to feel the keys as much as they used to so I can type reasonably well, though not as fast as I used to. There are a number of other small but life-altering ways that peripheral neuropathy affects you. Like not knowing if you’re holding something. Or wearing your slippers (there have been a couple occasions where I found I’d left my slippers are few steps back while working in the yard…fortunately my feet weren’t still in them.)
Is the neuropathy permanent? We’ll have to see. So far B-complex vitamins and alpha lipoic acid haven’t had any appreciable effect. Neuropathy can last for years or be lifelong. While it’s nothing to sneeze at and it has its extremely frustrating moments, it is something I’m slowly finding ways to cope with.
(I should add that in my case the neuropathy is idiopathic – we really don’t know what caused it. While I’d have temporary peripheral neuropathy that would resolve towards the end of each chemo cycle, the permanent form didn’t start until about a month after the last chemo cycle and before chemo-radiation. It did start about the time I got a Moderna COVID-19 booster so it can’t be ruled out that this is some sort of side-effect of that – there have been anecdotal reports of neurological side-effects of the mRNA vaccines though they’re usually transient. My primary vaccination was compliments of J&J so this was my first exposure the new-fangled mRNA stuff.)
The other set of side-effects will only become evident after the ileostomy is reversed. The expectation is that bowel functions will not be normal, though different people are affected in different ways and the doctors can’t really predict how things will go for a particular person. The effects can range from increased “urgency” to a need to go more frequently (up to five or six times a day) to other complications. My surgeon is hopeful these can be managed to an acceptable level using various medications and supplements.
So is it all worth it? I’d say ask me in a year (or check back for the two year anniversary blog post 😁). The one thing I’ll say is never, never, never tell someone who’s going through cancer treatment (or anything similar) “Well, at least you’re alive!” Unless you have a death wish (the very few of you who have made such a comment to me recently should be glad you’re still alive. There’s a post-surgery side-effect I haven’t mentioned yet which is that for unknown reasons I’m waking up at 8-9 in the morning. Which means I’m not getting much sleep. And cranky, sleep-deprived vampires wandering around during daylight hours are bad enough. One with an ostomy is already dealing with a lot of crap, er, literally and figuratively, so its best not to piss them off. Even if they have a urostomy.)
Being alive isn’t an end in itself. It’s living that’s important. The last year has only reaffirmed that whether a treatment and its potential side-effects are “worth it” is a personal assessment. I can see a great many people electing to not go through the last year I experienced, especially with the potentially life-long side-effects to look forward to. (I’ll admit I had almost no appreciation for the side-effects, though its hard to fault anyone for not explaining things. Neuropathy in particular is something that’s difficult to appreciate until you’re actually experiencing it. As is chemo-hair, though thankfully that was temporary.) As for me, I continue to be hopeful that with the care of my (I must say rather excellent) medical team and the support of those around me I’ll be back to doing all those things that make life worthwhile in a few months!