The Cancer Diaries, Part 13

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Emotional roller coasterIt’s been an emotional, roller-coaster week for me (if you’ll pardon the cliché…). Back and forth to Barrie for consultations, scans, and tests, more blood work, phone consultations with doctors and hospital social services staff, schedules set, schedules changed, confusion over medication, appointments upset. All in all a rather trying time.

Prior to my next stage of treatment — radiation — the oncologist told me I needed another blood test (for PSA levels: even without a prostate the cancer cells produce the prostate serum, remaining an indicator of their activity), as well as another bone density scan and CT scan. Plus I had to go into the hospital to get set up for a radiation planning scan, and back to Barrie to see my urologist.

The oncologist also prescribed hormones, calcium, and vitamin D3. The later two are to help combat any bone loss that might result from radiation treatment. The hormones are to reduce my testosterone, which will help limit the cancer’s growth. There was a bit of confusion about when I was supposed to start taking them. Normally you start a week to two weeks before radiation, but when I got the prescriptions filled, the start date had not been set. I asked nurses when I was at RVH, and called the radiation department, but got conflicting answers. One nurse said wait, another said start now, so I did that even without a date for treatment.

Then I got a call saying my treatment would start Nov. 11, just over a week away. I was glad I had started the hormones. But what about the injection? I’d find out later.

The Monday morning planning session was at the oncology department. I had not been in that wing before. There’s a certain finality about going into the oncology wing. Everything else was medicine: this was cancer. It’s sobering to sit there, waiting to be called, knowing that you and everyone around you in the waiting area is there for cancer. I realized it deeply, sitting there, in a way it didn’t reach me when I went through the surgery and other processes.

If ever there was a moment to realize your mortality, waiting in the oncology department is it.

The planning process was fairly straightforward: I had to have a full bladder and an empty bowel before we started, then I lay still while the machine moved me in and out while it scanned the region where I would receive the radiation. Having a full bladder is easy, but bowels don’t perform on demand quite so easily. Anxiety can make them reluctant to perform at all, especially when I had to get up early, grab a cup of tea without my usual breakfast, then head out on the long drive. My normal daily schedule was not being observed and my bowels knew it.

The reason for these conditions is that a full bladder pushes the small bowel out of the way, so it doesn’t get radiated during exposure. The full bowel, however, gets in the way, which means it may be radiated unnecessarily. Since radiation kills cells, it could damage the bowels. Good thing this was just a scan.

I duly got changed into the “fashionable” hospital gown and coat and waited with a book (I reiterate: ALWAYS take a book or two because you end up waiting a lot). When I was called, the nurses helped me settle in place as comfortably as possible on the machine bed. I have to remain in the same spot and position every time I get treatment to avoid being radiated in the wrong area. The nurses mark spots on your abdomen with sharpies then tattoos tiny dots on them so the marks will always be visible when setting up future scans. I quipped with the nurse that since her job included becoming a tattoo artist, she could always pursue that as an alternate career.

I lay there while the bed moved slowly in and out of the Star-Trekish machine scanning my abdomen. The resulting scan would help the radiologists plan the exact location for the radiation. Unfortunately for me, I later learned the scan also turned up an enlarged lymph node. That’s very worrying: if the cancer metastasized into lymphoma, it can be a very nasty, and untreatable cancer.  I am still waiting for more details on that result. Perhaps it will be radiated, too.

It took about an hour, then I was able to drive home. I listen to audiobooks on the drive to help me avoid obsessing over the tests, schedules, and the cancer. (Right now I’m listening to the complete Don Quixote, the Grossman translation on 35 CDs, now ripped to a USB).

That afternoon, I got a call from the hospital setting up my radiation schedule: starting Nov. 11. I needed to wrangle a  bit over timing. The original plan was for me to start at 8:15 a.m. every day. That means getting there at 8, but that also  means I have to leave around 6:30 a.m. or earlier in potentially bad weather. Which means getting up at or before 5 every weekday. And driving in winter, probably snow, and dark. Not good for a senior with diminished night vision, fatigue, and slower reflexes. After some discussion, I managed to get it changed to a later time in the morning for most of the sessions, but not all.

The next morning, I was in the local doctor’s office first thing, getting blood taken for yet another PSA and other tests. At least my drive was minutes, not hours.

Wednesday, morning the hospital social services called early to discuss my mental state, wanting to offer any support and outreach should I be feeling depressed, anxious, confused, angry, lonely, or frightened. All symptoms people go through when dealing with cancer. Well, I’m not feeling them, for the most part. I have a wonderful, strong relationship with Susan to help support me. Having a loving partner with a good sense of humor makes a huge difference to one’s attitude. And I try to be Stoic in my philosophy about things like life and death. Writing this blog also helps me put everything in perspective, express my feelings in a medium I’m comfortable with, and keep events straight.

The social worker also discussed what to expect from radiation treatment. Fatigue seems to be the primary challenge for many people, deeper than just being tired, but there are potentially others I would have to deal with when they arose. I hope my relative health (aside from cancer) will see me through those.

In a way, I feel dealing with cancer is a lot like dealing with the weather: we can talk about, complain, groan, get angry, depressed, rail against the sky, but we can’t change anything by doing so. We just have to live with it and deal with what comes next. Treatment will or won’t work and nothing I feel or say will change it. Might as well just go with the inevitable flow and not obsess about what comes next. Easy to say; harder to do. Emotions have a way of sneaking up on you.

I was at the urologist’s office again, later that Wednesday morning. He told me my PSA was up to .26 from the .17 it had been post-surgery. Not a good sign, but he said the hormone treatment would help mitigate that. He wanted me to arrange for the injection sooner than I had expected (he would have administered it that day had I brought the kit with me), but scheduling proved tricky and I won’t get it until next week.

But the big issue was radiation. He wanted to delay that until I had more time to heal from my laser snipping a couple of weeks back. (My urine flow is somewhat improved but still not a firehose, I told him.)

He called the oncologist and had me wait for them to discuss it. When he returned, they had agreed to delay the treatment by another couple of weeks. I suppose that’s best, but I had gone through some mental/emotional gymnastics preparing for the seven weeks of daily sessions, and had girded my mental loins for what that entailed. But with a change, I have to come to terms with a new schedule, one that would see me in treatment through the holidays right into the New Year, all during the worst of the winter weather.

Once I left his office, I had several hours before my bone density scan, later that afternoon. The last time I had the former two scans (bone and CT), I was able to get both on the same day, saving me another 120km drive there and back. Not this time. Since bone density scan requires an injection, then a delay of several hours (two last time), it’s more productive to have something else to do in the hospital than just sit and wait. I was initially told I had a 3:30 p.m. appointment, but to arrive 15 minutes early to go through processing. I calculated I’d be finished about 6:30 p.m. to drive home.

Since I was already in Barrie, I stayed in town. I got a coffee and sat in my car reading for a while, then headed over to the hospital to wait there and read some more, arriving just after 2 p.m. I registered at the imaging department, where they confirmed my time and even suggested they might take me earlier. They didn’t, and I was still waiting by 4 p.m. I finally asked someone about my appointment. Seems there was a confusion: one said 3:30 and another 4:10 p.m. No one, however, had come to get me by 4:10.

But worse: one technician told me I’d be there until 9:45 p.m., much later than I had been led to expect and a lot longer than my first bone scan took. I’d get the injection then would have to return just before 9 p.m. for the scan.

I certainly didn’t want to drive home at or after 10 p.m. in the dark, after a long day without anything to eat. And I didn’t want to spend the next five hours sitting around in the hospital, despite having brought several books to read. When I mentioned this to a technician, she told me I could go to a restaurant. Barrie had lots of restaurants, she said. In a pandemic? Find someplace safe to eat in a city I didn’t know? She even huffily suggested I just go home. I pointed out I lived in Collingwood, and it would be a three-hour round trip. She was rather gruff and unsympathetic, and the only person I’ve encountered at RVH who was not helpful or pleasant. That didn’t make my mood any better or less stressed.

Fortunately, a more sympathetic tech took over the conversation when I appeared to be getting rattled by the other’s responses. He said not to worry, they would re-scheduled the appointment for a better time, and calmed me down. I left the hospital (after paying $13 in parking) and drove home, arriving seven hours after I’d left. A bit frazzled, stressed, and in need of a glass of wine and some dinner.

I am still waiting for the bone density scan to be re-scheduled, but have my CT scan early next week. Then my hormone injection at the end of the week. And after that… probably some more phone consultations with doctors and radiologists. And, of course, the long, anxiety-building wait until I can start my radiation treatment.

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