@hospital

Myeloma, Sex, and Dementia

~ Roger JG Albert ~ 3 Comments

October 30, 2022

I hope you’ll forgive me if I’m not my usual chipper self today. I was in the Hospital again for a few days starting on Tuesday morning the 25th. On Monday afternoon I got radiation treatment on my back and right femur. That evening and especially during the night, I developed a high fever and once again I ended up on the floor in our hotel room unable to get back into bed. Paramedics came and they got me back into bed. They had to come back later to take me to Royal Jubilee Hospital in an ambulance. That’s the fourth time I’ve ended up in Emerg with a high fever after a treatment for myeloma.

The radiation oncologist at the BC Cancer Centre assured us that the radiation treatment had nothing to do with the high fevers I got on Tuesday after the radiation treatment on Monday. I have no reason to doubt her, except that it’s hard to deny the pattern here. It seems that every time I get a treatment for myeloma my temperature spikes and I end up in Hospital getting massive doses of antibiotics and other meds. I can assure you, though, that it will not happen again because I will not get any more treatment for myeloma, not chemotherapy, not radiation. It’s just too hard on me. My gut gets squirrelly, unsettled is too weak a term for how my gut feels. It’s still messed up and it’s Sunday. I can only hope that it gets better. Hope is all I have left. [It is better -Tuesday]

October 31st, 2022

I don’t mean to gossip, but my stay at the hospital this past week was replete with drama. Emergency Departments these days often stand in for family physicians. People with minor ailments are stacked in waiting rooms while often more seriously ill or injured patients are made to hold up in ‘rooms’, (that is curtained off areas) that are tiny. It’s possible to hear everything that goes on in these ‘cubicles.’ When I was taken to the hospital by ambulance on Tuesday 4:30 AM or so I was immediately introduced to the maelstrom. After a short time I was wheeled into a room that is set up for two patients. Carolyn was with me. We could hear everything that was going on in the area centred on the nurses’ station.

Enter a screamer. Make that an old screamer. She is eight years older than me but assailed by dementia. We eventually learned that she had fallen and broken a femur. She must have been in a lot of pain and she made it very clear to everyone within earshot that she was highly distressed. Initially, she was wheeled into the maelstrom, then for some reason the staff moved her into the room I was in. She screamed “Help, help!” over and over again, even if there was a nurse in the room. Then she would yell “No, no, no, no, no!” This went on and on and on at well over 100 decibels. I am not blaming this poor woman. She was in pain and she has dementia. But, man, did she have a set of lungs too. Every once in a while we’d hear a patient yell from across the room: “Shut up! People are trying to get some sleep here!” That didn’t slow her down at all.

November 1st, 2022

Finally, they got me into a ward on the 8th Floor of the hospital. That happened sometime after 11 PM on Tuesday. At the North Island Hospital in the Comox Valley I ended up on the 3rd floor a couple of times, in the same room too. It’s a large room for one patient. In the Royal Jubilee Hospital in Victoria, I was wheeled into a room set up for three patients. When I arrived, it was already occupied with two patients, a young man probably in his twenties, and an older man. Not sure how old he was. During my stay there I didn’t talk to the other two patients in the room, not once. The older guy was very ill and demented. He screamed most of the time, often at the top of his lungs, much like the screamer in Emerg. The nurses told him on more than one occasion to be quiet and the care aides admonished him periodically to “be nice to us.” He was not nice at all. He swore at everybody and wondered aloud why people were in his bedroom. He was most unpleasant, but I can usually tolerate people in his situation.

What can I say about the kid in the third bed. He was young, he could move around, and often went to the bathroom. I’m not sure why he was in the hospital, but I know that he was visited periodically by someone working on mental health and addiction issues. On my last night there, two young women came to visit this guy. They arrived around 7:30. One of them left around 9. The second one didn’t leave until 1 AM. You can draw your own conclusions about what happened behind the curtain separating his part of the room from mine, but it brings to mind a certain Paul Simon song. I know, it’s unbelievable but it did happen. It’s a good thing I had earplugs, because I still detected the odd moan and groan through the curtains. The nurses must have known she was there, but nobody did anything about it. Interesting. Not something I expected to experience in a hospital. Always a first time I guess.

Not Dead (Just) Yet.

~ Roger JG Albert ~ 17 Comments

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!