It's been a very busy and vivid past 18 months. I have not written here because I carried out this last go-round with cancer on Facebook, but it's time to write it all down, chronologically, for posterity. Spoiler alert - there is some gruesome language and description of bodily function that might gross you out. You have been warned.
In February of 2024, shortly before my birthday, I came home one evening and saw a strange vehicle parked in our driveway. Strange as in unknown, that is. At first I wondered who was there to visit us, but as I kept looking, I realized there was a giant bow on the car. Then I sat there for a minute in disbelief, denying what my eyes were seeing. To give you some background, my sister-in-law had passed away and left a small bequest to my husband (her brother). He received that amount, as well as her old Ford Escape, and at the same time, the payout from insurance for his own vehicle which was totaled when it slid off an icy road on Christmas eve. He was okay, just pissed off. Since he had her vehicle, he decided to get me something I'd talked about on and off over the years - a summer car. So what was sitting in the driveway was a bright blood red Mustang convertible. It wasn't new by any means at 17 years old, but it sure looked pretty. I'll save the saga of the Mustang for a future blog post, because it's quite a story!
At my CT scan in early March of 2024 things looked good and I was declared cancer-free for the second time. Later that month I went to my family doctor with apparent sciatic pain, which was not new but had been shuffled aside while we dealt with that last cancer. He sent me for x-rays, which didn't find anything. He decided an MRI would be an appropriate next step, and I was scheduled for one in mid-July. In the meantime, we tried some pain relief drugs, which didn't really help.
In June I attended the Mensa annual gathering, which was taking place only a few hours' drive from me that year. Although it was a really good event, I had a difficult time sitting for more than a few minutes as I was in such pain. Because one of the meds I was on for diabetes was causing horrible bowel distress, I decided to stop them during that weekend. My doctor and I had previously discussed discontinuing that med, so it was okay. My MRI was scheduled for July 18th, a Thursday. On the Monday before I happened to already have a follow-up scheduled with the gynecologist who had performed my hysterectomy (due to the first cancer). I tried not to be alarmed when she felt something. When I mentioned the upcoming MRI, she tagged on to that procedure with a few tests of her own.
The following Monday, I was driving to work when my phone rang at 8:00am. I will never forget the time or the contents of the conversation. Her first words were "your cancer is back". I asked her to forward the results to my oncologist and thanked her for the news. A little later that morning I called the oncologist's office and left a message that I'd been diagnosed with Cancer again. That afternoon the oncologist's office called back and asked me to come to the hospital in London (a 2.5 hour drive from me) on Wednesday, prepared to stay for a few days. I was stunned and asked, "Wednesday as in day after tomorrow, Wednesday?" Yes, that fast! I told my boss and packed a bag. I was in hospital from the Wednesday to the Friday and had a series of invasive procedures and tests. The determination was that cancer had indeed come back and my paranoia was not so misplaced.
The oncologist indicated that I could have treatment there in London, or she could refer me to an oncologist in my area, thereby saving me the long drive as chemo is offered at my local hospital. I opted to stay local because I didn't want to potentially miss any treatments due to weather. We can get serious bad weather in the winters where I live. I was told I would also need surgery. Well that wasn't news to me. What was new was the kind of surgery and the ramifications of it.
I soon met the local oncologist and the surgeon who would perform my surgery. It was explained to me that I had a large tumour pressing on or attached to my lower bowel, and a few lesions on my stomach. It would be necessary to essentially detach the upper bowel from the lower bowel, an ileostomy, which meant I would be pooping into a baggie for the foreseeable future, possibly forever. I didn't even hesitate when I asked how soon we could get on with it. The reason for the ileostomy was that they weren't sure if the large tumour was part of the bowel. If it had attached itself to the bowel, it might well be that the bowel would have a hole left in it as the tumour was melted away. If that was the case, depending on the size of the hole, they might be able to shorten the bowel a bit, or if not, I could be left with the baggie permanently. I just wanted the cancer out.
Remarkably, my luck with surgeries seemed to hold as less than three weeks after my diagnostic hospital stay I was being prepped for surgery.
When I woke up, I did have a baggie hanging off my right side of my abdomen. The surgeon was happy with how everything went, and told me that he'd done the surgery such that the procedure could be reversed if things went well. A few days later I was home, but it was short lived. The nurses were fantastic and gave me great care, but after some experience living with a baggie, I could definitely say that their training needed to include more instruction on ostomy care. I woke up in the hospital the day before being released to find that the baggie had become detached from my skin. It's only stuck on with adhesive. The nurse/psw had to clean me up, put on a new bag, and change the bed. I noticed a lot of redness around the ostomy and there was some stinging pain (like sanitizer on a papercut) while it was being cleaned up. I worried that my allergy to some adhesives was causing the redness and how that would be managed. The next day I was to be released and a nurse showed me how to remove the old bag and attach a new one. Really, it was a five minute "lesson". I was sent home with a goodie bag that included one spare bag and supplies, and a contact number for the company that provides the hospital supplies of ostomy equipment so I could order more. I was told I could set up an account with the government for financial assistance with supplies, and that the one baggie would be good for a week, which would be long enough to get some supplies in. Sounds easy, right?
That night at home, around 2:00 am, I woke up to an exploded bag. Wrong term really, although that's what it feels like. Essentially, the baggie had detached from my skin and the feces had oozed out. I was somewhat happy that I had worn a nightgown and it had somewhat contained everything so that my sheets were not covered in poop. So there I was in the middle of the night, sitting on the edge of the tub and putting on the new baggie. It took some time, and of course I was very upset while doing so. Still, I managed. I thought. A few short hours later I woke my husband. He had been sleeping on the sofa for over a year as he didn't want to jostle me in the bed because he knew my sleep was disturbed enough already. I told him I needed him to take me to the emergency room. My baggie that I had replaced in the night had not remained stuck on and I had another poop event to deal with. Now I'm upset because my abdomen is raw and bleeding, and I'm out of supplies. Instead of pulling this bag completely off, I pressed my now completely soiled nightie to it, put some clothes on, and went to the ER at 6:30 am. Fortunately the wait wasn't too long and I was soon put into a cubicle. They gave me some sterile pads to hold over the ostomy and a plastic bag for my nightie. I had at first thought to wash it, but ended up tossing it in their trash can after I'd wrapped it up. Too bad, because I'd liked that one.
I laid there in the cubicle, upset, weepy, and feeling sorry for myself for the first time. When the doctor walked in, I was elated to see it was my own family doctor. He explained to me that he worked the ER every Monday. It was so good to see a familiar face, and someone who knew my history. He took a look and had a nurse come in. He explained what kind of equipment she'd need and asked her to fix me up with some extra supplies. This time it stuck. At least it stuck long enough for my visit to the wound care folks.
I'm going to skip forward a bit. I had several appointments with the nurses at wound care. The problem with the bag sticking to my red and raw skin had them refer me to their ostomy specialist nurse. She told me that the redness was from there not being good adhesion, which allowed feces to ooze under the bag seal and sit on my skin. Think about what your stomach acid does to food, well, that same acid on your skin is caustic. Over the next two months she tried different processes to dry my skin and maintain good adhesion. We managed to get the skin in a good place and I was able to take over managing my baggie changes, with weekly check-ins with the ostomy nurse when she would also change the baggie and monitor progress.
In the meantime, I was scheduled to start chemo towards the mid-end of September. Since I had long, naturally curly hair, I was upset with the knowledge that it would soon be gone. I decided to get it cut short because I reasoned that it would be less traumatic to see four-inch lengths of hair disappearing down the shower drain. I also decided to colour it so I would at least have fun hair to distract me from the loss of length until chemo would take the rest of it.
My 21-year-old son held my hand the whole time, because I cried as my hair was all cut off, and even as it was bleached and dyed. The hair stylist was very sympathetic - I'd told her what was going on. She didn't even charge me for the cut part, just the colour.
One morning shortly before chemo was due to start, I had planned to meet a friend for lunch. I woke up and realized I was having problems with my vision. My first thought was to wonder if I was having a stroke, but I wasn't slurring my speech and was ambulatory. Still, I cancelled lunch and immediately went to the hospital. I saw the ER doctor, who sent me to see the ophthalmologist on call. After a very thorough exam in which he didn't see anything wrong with my eyes, I was sent home. The next day, Monday, my oncologist called. He had seen the ER report and had scheduled me for an emergency MRI. After the MRI, I was told to wait as the oncologist wanted me to see the hospital neurologist immediately. I later learned that he'd quite literally called her and begged her to look at my film and see me right away. So an hour after the MRI, I was in the neurologist's office, whereupon she told me I had indeed had a minor stroke. She showed me on the scan where it had occurred. She told me that my vision might well return to normal after some time, but in the meantime I was not to drive. (I agreed not to drive, and I wouldn't have, however, a week later a notice came in the mail from the Ministry of Transport suspending my driving privilege for the time being.) She scheduled me for a CT scan to see if we could determine a cause of the stroke. I also had an Echo (heart scan) and a Holter Monitor for two days. At a meeting with my oncologist, he told me that the commencement of my chemo would be delayed. I was distraught, but he pointed out that a stroke would kill me a lot faster than the cancer, so it was okay to delay the chemo. He was right.
The next blog post will have the continuing saga. Tune in again, same bat time, same bat channel.
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