Not Dead (Just) Yet.


From the many comments I received after my last post A Time To Die I obviously left the impression that I was on my way to an imminent death. I guess the concept of ‘imminent’ is what the issue is. Without intervention I have no idea when I will die although I can set up a situation through Medical Assistance in Dying (MAID) whereby I can determine the time and place of my death. I’ve filled out the papers so that I now have the MAID option. The papers don’t obligate me in any way, and I don’t have to go through MAID if I choose not to. I don’t see any downside to being prepared by filling out the necessary paperwork well before I decide to use MAID or not.

This past weekend was a momentous one for me. I almost died for real, fulfilling the implied (somewhat exaggerated, certainly) conclusion of my last post.

After my infusion of Carfilzomib last Thursday, the first of my third cycle, I got some familiar symptoms: spiking fever, the shakes, insomnia, and pain, lots of pain everywhere in my body. By Friday morning I was in serious trouble. In spite of drinking copious amounts of water during the night, I could not pee, and didn’t even feel the urge to pee. It was obvious something was very wrong. At that point Carolyn called the Cancer Care Centre at the hospital. They advised her to get me to the ER as soon as possible. So, off we went. The Emerg staff got to work on me without delay, wheeling me into a room close to the nursing station, a room I had been in before on a previous occasion for the same reason.

They ran numerous blood and urine tests. They concluded that my kidney was functioning at less than fifty percent capacity. They installed a catheter and hooked me up for an infusion of liquids (lactated ringers). The ER doctor minced no words (strange turn of phrase) in telling us how close I was to dying. I filled bag after bag of concentrated dark and thick tea-coloured pee. I was formally admitted later in the evening and transported to the third floor, again to a familiar room across from the nursing station. Once there, my kidney quickly rebounded and resumed its more or less normal operation. By Sunday evening, after the staff was ensured that I had no infection and that my ordeal had been brought on strictly by an adverse reaction to Carfilzomib, I was discharged. The intent was to keep me in the hospital until Monday, but that was unnecessary at that point. I called Carolyn and she picked me up. I was one happy guy.

As I write this it’s Tuesday morning, September 20th around 9:20 AM. I feel that I’m slowly recovering from the weekend’s trauma, as much as an old man with myeloma can.

One thing I vividly recall from my three days in the hospital is that the many clocks all run on time, marking the seconds by the slightest but silent advance of the second hand. For long periods of time I was fixated on the clock and its inexorable movement forward. Sunday evening all I could think about was going home. The clock couldn’t move fast enough.

Another thing I recall is the change in my body odor. I was quite surprised by this. I shouldn’t have been because my entire body chemistry was under assault. I tried to wash frequently but being attached to my ‘med pole’ I called Ted made it very difficult to move around and get to the washroom. Of course, with my catheter I didn’t have to worry about going to the washroom to pee. That was kind of nice, actually.

Anyway, I should get to the crux of the matter here. I’ve decided that I can no longer continue receiving chemotherapy. Clearly it was killing me. In 2019 chemotherapy was offered to me as a way of mitigating the effects of myeloma. Instead, it exacerbated them for me. That’s not true of everyone receiving chemotherapy for myeloma or for other forms of cancer. Chemotherapy works for many people. I’m just one of the unlucky ones who has adverse reactions to chemo drugs, and I mean all chemo drugs. So now, I am palliative. I may still receive some treatment for my myeloma but it won’t be chemotherapy. It may be radiation or surgery, but even those options will have their limits.

I’m so fortunate in having very supportive family and friends. Our daughters came over from Vancouver on Friday to be with their mom and to come visit me. Coming from Vancouver with no ferry reservations is daunting, but I’m sure happy that they managed to get over here. It was definitely touch and go for me. I needed the support, so did Carolyn. My sister Hélène and her husband Roger came for a visit on Saturday. That was very pleasant and a welcome diversion from the hospital routine.

In conclusion, I must say that I received most excellent treatment at the Hospital this time around. That hasn’t always been the case, but this time we were very impressed by the care I received. Thank you so much CVH staff!

17 thoughts on “Not Dead (Just) Yet.

  1. Well Roger, you certainly has overcome a mountain of trials with your cancer journey. I wish you a strong heart and lots of love as you move forward. I must say that after your last post, I was worried about you. I kept looking for ravens, but there were none around here. Please keep writing as long as you can. We are all learning a lot from sharing this journey with you. Your fan, Kat

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  2. Good morning Roger. I just read your last post. I am so sorry the Carfilzomib caused such havoc in your body. Sometimes the effects of treatment are worse than the disease. That certainly was my reason for stopping chem 4 or 5 months ago. I am at peace with that decision. It sounds like you are too? Keeping you in my thoughts Roger as make our way on our journey.

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    1. Thanks, Brenda. So, just because you are not on chemo anymore does that mean that the BCCA has
      no longer anything to do with you? I am in peace with my decision, but it was easy because the Carfilzomib was killing me anyway.

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      1. I recently had 5 radiation treatments at the Victoria Cancer clinic under the direction of Radiology Oncologist Dr Wu. So I am still involved with the BCCA. But no longer deal with our local Cancer Clinic.

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  3. I think your decision to end chemotherapy is wise, though it breaks my heart to hear you say that you are now palliative. I’m glad this weekend wasn’t the end for you!

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  4. Hi Roger, I just read your most recent blog posts this evening. I am very sad that you are so near the end. You have been a very interesting friend to me over the years, as well as sociology instructor. Not many instructors continue contact with their former students as you have. I will miss reading your blogs. But all good things come to an end. Your blog will, hopefully, remain online for us to re-read. If you give Carolyn the password, if she ever chooses to remove it, she will be able to do that. I am actually making an effort to plan ahead to donate books I know I realistically won’t have time to read as well as donate DVDs that are not important for me to keep to the Salvation Army. At this stage in life, we all need to prepare for our inevitable demise. I appreciate that my mother was constantly thinking ahead and downsizing so that my sister wasn’t overwhelmed with the final clear out from her apartment when she entered Eagleview Complex Care Unit. (I couldn’t clear mom’s apartment, as I still had to work to earn a living). My sister was on a disability pension at that time. I think of you and your family frequently, and pray things will go smoothly for all of you when your time is up.

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    1. Thank you, Marilyn. Yes, we’ve known each other for a long time. And, yes, my time is coming to an end. I have no idea what the timeline I’m facing since going off chemo, but I’m talking to the palliative care staff and it seems that they can come up with ballpark estimates of survivability.
      It’s interesting that you write about downsizing and getting rid of ‘stuff’. Well, I have mountains of stuff! I’m afraid my family will have to do the deed and make many trips to the dump. I have a ton of books, of course, most of which would be of no interest to anyone. Libraries are so idiosyncratic and I don’t have the energy to try to sell them all, or even give them away. There may be somebody out there who would broker them, but I can’t even be bothered trying to find such a person.
      Anyhow, good luck with your own health issues.
      R

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