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Tag Archives: Organ Preservation in Patients with Rectal Adenocarcinoma


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Getting ready for cycle 2: My journey with cancer (Part 6)

As you know from the previous post, the first part of cycle 1 wasn’t what you could call a walk in the park. Once the Restoralax did its work, though, and I was able to get some sleep, things greatly improved. The past week has been much better.

It’s hard to think about it in the midst of particularly challenging moments, but we do pass through those moments and, in my experience at least, there are pauses – lovely oases – before the next challenge arises. Time is a marvellous thing!

Updates

I saw the radiation and chemo oncologists last week and got some helpful information from them. Firstly, the 12 chemo cycles that the nurse saw in the computer was an error. There are only 8 cycles for my protocol – yippee!!! So I’ll be finished chemo by early October. About 4 weeks after that I’ll have more scans and then about 2 weeks after that will be the scope. Once that’s done we’ll know how well (hopefully!) everything has worked and figure out the next steps from there.

The radiation oncologist is also making a referral for me to the Women’s Clinic at one of the hospitals to help with the effects of being shunted into menopause from the radiation.

On Friday, I saw the PICC line unit because of the discomfort and occasional pain in that area. They did an x-ray and confirmed that everything is fine with the catheter. It’s probably a muscle pull or something to that effect so I don’t need to be as ginger with it as I have been, which is great.

The wrist tendonitis has flared up again so I have my hand/wrist all wrapped up to reduce how much I use it. Typing this will be the most work my thumb will do today! I am learning to do more things with my left hand, which is not a bad skill to have. Here’s a challenge for you: Brush your teeth with your non-dominant hand. It’s so weird! 🙂

Cycle 2 prep

Tomorrow cycle 2 starts. I think I’m more ready for it than the last one. One of the nurses I saw last week suggested that I start taking Restoralax today and continue for the first few days of the coming week to hopefully head off a repeat of the last time. Works for me! I also have lots of unsweetened applesauce on hand to help things along, too. 😀

I will very likely still have insomnia on at least Monday night, if not both Monday and Tuesday like the last time. The chemo oncologist said she could prescribe a sleeping pill, but if it’s just one or two nights I’d rather muddle through it, knowing it’s just temporary, than throw another pill into the mix for my liver and kidneys to have to deal with. They have enough stress and pressure on them. If it does happen, I have a few things lined up to do to help pass the night away. And, really, taking the expectation of sleep off the menu also removes the frustration of not getting to sleep, which is also helpful. It won’t be fun, but it’s hardly the worst thing a person can go through in this whole process.

I have my snacks, puzzle books, novels, drinks, etc. ready for my onsite chemo tomorrow morning. I shan’t be bored! The bottle for the at-home infusion wasn’t as much of a bother as I thought it might be so I don’t have any concerns about that. I’m also quite used to room-temperature drinks and food. It takes some planning – no spur of the moment grabbing juice or milk from the fridge. I have to pour it up a few hours before drinking it to get it warm enough not to get that broken-glass feeling in my throat. But I think I’ve got the handle on that. I keep my water jug on the counter now so there’s always at least something to drink.

I’m also getting much better at remembering to put on the gloves when reaching for things from the fridge or freezer. Those pin-prickly zaps to my finger tips aren’t painful right now, but they will likely become so as the effects accumulate and become stronger. More than that, though, I don’t want to be careless and end up with permanent or really long-term peripheral neuropathy. That thing can be life altering – if you can’t feel the bottoms of your feet, you can’t walk, for example. So I am being much more mindful of that and ignoring the little voice that says, “Oh…don’t be silly…you’ll only be touching it for a few seconds…” Nope! Active quashing of that voice, thank you very much!

I had no nausea last time, but that doesn’t mean there won’t be any this time, so I’ll be keeping an eye on that. In my grocery shop yesterday I made sure to get things that will be easy on the ol’ tum-tum should that occur. My friend Joanne in Saskatchewan sent me a lovely care package a week and a half ago with a bunch of snacks that a friend of hers found handy to stash around the house, close to wherever she would be so if she wasn’t doing well, she would have easy access to them. I also have ginger ale at the ready!

All in all, I think I’m as ready as I can be for the coming week. I definitely feel mentally much better than the lead up to the first cycle and the first week of that cycle. It also helps knowing there are 8 instead of 12 cycles. As of Wednesday this coming week, I’ll have finished 25% of the chemo already! Woohoo!

Wishing you well

Thanks for reading… I hope that things in your universe, wherever you are, are going well or at least as well as they can be at the moment.

If you aren’t currently going through a big life challenge, hopefully you are able to be a support to someone around you who is.

And if you are going through something big and heavy, I hope you are able to find your own internal support, which is so important, and that you have some great folks around you to help you through it. You are not alone.

Whatever the outcome, all will be well. (Henry B. Eyring)

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Tests, treatments, and more tests – My Journey with cancer (Part 2)

In my last post, I told you about having been diagnosed with rectal cancer. That was on February 16. Hard to believe that was two and a half months ago!

Since then, I have had several blood tests; a diagnostic MRI and CT scan; and appointments with the colonoscopy doctor, radiation oncology team, the surgical oncology team, medical oncology (chemo) team, and my GP. I also had another MRI and CT scan – as prep for radiation treatment. At that appointment, I got three teeny, tiny little tattoos – one on each hip and one at the base of my tailbone. Not to mention a few rectal exams for good measure!

Through the jigs and the reels, here’s what we learned…Hmmm…let me pause here… I’m going to give details about what we’ve learned for the purpose of maybe it helping someone else somewhere along the line. If you don’t like medical details, though, you might not want to continue reading. Just because I have had to learn more about colorectal anatomy the past few weeks than I ever thought possible, doesn’t mean you need to! (I.E. Consider yourself warned. 😀 )

If you DO continue reading, I also need to provide the following caveat: All of the information I’m talking about is based on my understanding of what I have been told. I am not a medical expert. I am not an anatomy expert. This post is not meant to be read as any sort of reference or resource in that regard. I have very likely misunderstood some bits and am for sure oversimplifying many things. This is only meant to represent my own journey. If you want medical precision and exact details, you should definitely look to reliable sources. 🙂

Now…on with the show…

The tumour is about 4 cm long. It is towards bottom of the anal canal, about 1 cm above the interior sphincter. It has spread to a nearby lymph node, which is what has made it stage 3. Because it hasn’t gone any further than that, it isn’t stage 4.

When I met with the radiation team, they told me there were two options: surgery resulting in a permanent colostomy, or a clinical trial they were doing that was having really good results. That trial is called OPRA (Organ Preservation in Patients with Rectal Adenocarcinoma). I don’t know why there is only one P and not two (preservation and patients), but what do I know about creating acronyms and initialisms in the medical field? Whatever it’s called, I’m glad it exists because closing up shop in the back yard was not at all on my list of things to do during my 50s, so I was very happy for an alternative. If you are interested in reading more about it (the trial, not my back yard 😀 ), I am including some links below.

Essentially, in this treatment, I am doing what they termed as aggressive radiation and chemotherapy, following by intensive follow up. The radiation started on April 18 and is every day (Mon-Fri) for five and a half weeks. I am taking a “low dose” chemo drug during the radiation, as well, as it helps with the efficacy of the radiation. (I put “low dose” in quotes because it’s 1,800 mg at breakfast and another 1,800 mg at dinner – not normally what I would call “low”, but again, what do I know?) Blood work is every two weeks during this period and I will meet with the radiation doctor once a week. After this, there will be a break of about three weeks after radiation is done and then chemo will start. The details for the latter are a little uncertain at this point, but what I understand right now is that each week will involve blood work, treatment one day at the clinic, and then two bottles to come home with me. I’ll do that for four months. After that, there’ll be several more tests to see how it’s all worked and I’ll be meeting with the surgical team again. Probably with all of them, I imagine. Who knows! They’re a grand bunch of folks, though, so it’s all good. And by then they will all be very familiar with my back yard, so a reunion will probably be in order! ha ha ha ha ha

Assuming it all goes according to plan, I will then have tests and appointments of various sorts about every two months for… I can’t remember if they said two or three years. Then less frequently up to the standard tracking of five years. This treatment has a 50%-75% survival rate – meaning of me being alive in 5 years. There’s also a 50% chance that in 5 years I’ll need surgery and at that point the colostomy might be back on the table. The diagnostic MRI (or maybe the CT?) showed the tumour to be right on the interior sphincter. That was why the shut-the-back-door/permanent-colostomy was the other option. But the surgical folks were very…ahem…thorough in their…exam…and it paid off. They discovered that there is actually about 1 cm between the tumour and the interior sphincter.

I know…1 cm. Big whoop-di-diddly-do. What can you do with that? Turns out, kind of a lot. In case you don’t know, the rectum is not very long. The colon is about as long as from here to Mars. OK…not really. It’s actually about 5 feet or about 150 cm. (Interestingly, it’s about the same size in everybody – whether you are teeny tiny or biggie wiggie!) If you have colon cancer, they can frequently lop off 30 cm without too much trouble – taking the cancer cells and a decent amount of non-cancerous tissue on either side of it to be on the safe side (as in the recent experience of a friend of mine’s brother).

The rectum, however, is only between 10 and 15 cm long total. My tumour, as mentioned, is 4 cm long. That only leaves 6 to 11 cm of rectum to play with. If it’s on top of the sphincter, then the sphincter has to come out with the rest of the rectum and colostomy here we come.

However, the surgeons explained that even with just that 1 cm distance, if surgery is required at some point, it might not necessarily and automatically mean closing up shop and going with the permanent colostomy. They might (everything is still, naturally, maybe and might) be able to remove the tumour and the rest of the rectum and bring the colon down to join onto that 1 cm bit. There would be other physiological challenges – a colon is not a rectum, after all – but nonetheless it was music to my ears!

That’s all still a ways away, but I wanted this post to include everything I’ve learned up to this point about the treatments and options so there you are!

Before I close, I need to add that everybody I have dealt with medically at all stages in this journey has been absolutely lovely. Starting from the nurses and doctors during the colonoscopy to currently in my radiation treatments. Most of them are very personable, several of them have a great sense of humour, and all of them seem to be very competent and also very genuinely caring. The colonoscopy doctor was away on vacation the week that my MRI test came back and he called me the Sunday he got back because he saw the results were in and wanted to see how I was doing. Reread that if you need – a doctor called a patient on a Sunday for no other reason than just to see how I was doing.

In other posts I will tell you how I am doing (spoiler alert – it ain’t all rainbows and bluebirds, boys and girls!), but whatever else is happening or however I’m feeling, I am being well taken care of. I feel truly blessed to have all these different teams of people taking care of me.

Resources

As promised, please see the links below for information on the OPRA trial:

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