It’s been almost a month since my last post. It’s not that my life has been uneventful and I have nothing to write about. On the contrary, my life over the past month has been just plain weird. Living with chemo is by definition weird, but this month has proven to me just how weird it can get. Just living it has been weird enough. Writing about it near impossible until now.
I was probably optimistic in my last post about the effectiveness of Daratumumab as an addition to the usual chemo cocktail that is given to myeloma patients upon an initial diagnosis. I’m quite confident that Dara had a huge effect on my blood serum as evidenced by my lab results, which are anything but spectacular in the about face changes that have occurred over the past month in reducing the myeloma proteins in my blood. But at what cost?
One thing I have quickly learned is that life in chemotherapy is completely unpredictable. Get used to a particular effect of the drugs and it’s sure to change the following week. So over the past month I’ve had to go to emergency at the local hospital a couple of times for bizarre spikes in my temperature. Normal body temperature is an average 37˚ Celsius or 98.6˚ Fahrenheit. My temperature is normally around 36.5˚C. We all have some variation in our body temperature depending on what we’re doing and what the environmental conditions are that we experience. All the instruction literature we get as chemo patients tells us that if our temperature goes up to 38˚C that we should immediately get ourselves to the hospital. Well, that happened one day early in the month and we dutifully got to the hospital.
Well, we went unprepared. How would we know? I was not equipped to spend three hours in the hospital never mind three days. I had no change of clothes, no toiletries and nothing to drink or eat. These were all things that I would need. I was upset because my phone was running out of power and I had no way of recharging it. I asked a nurse if there was anyway of charging it. She took it away with the promise of charging it. I inquired about it a few hours later and she had trouble finding it to start with and it had not been recharged at all. I called home and Carolyn sent up some much needed supplied including a phone charger. Still no changes of clothes however and no toiletries.
Initially I was put on a gurney then transferred to a bed in an isolation room because the staff knew that I had myeloma and hence über sensitive to infection. I was immediately hooked up to a whole set of monitoring equipment and an IV was used to pump me full of antibiotics. The fear was that I would go septic and that’s a death sentence. I slept fitfully the first night and broke out in a cold sweat every once in a while. I had a very local cellulite infection in my lower right leg but that was discounted as the source of my fever. Apparently the cellulite was coincidental.
Later that day I was moved to another room in the emergency ward right at the back of the ward with nobody around. It was quiet and they had by then removed all the wires that connected me to the monitoring equipment although the IV was left in place. I got something to eat. Hospital food is a standing joke, but it was no joke for me. I wasn’t expecting gourmet restaurant dining, but I didn’t know they could do that with eggs. I was hungry enough to force it down but a steady diet of that food would be a great weight loss plan.
Thankfully I was transferred to another ward on the third floor later that afternoon. The food didn’t improve but the surroundings sure did. I had a large room with an adjoining bathroom. I asked for toiletries and was provided with a toothbrush and toothpaste as well as a towel. My GP came to see me both while I was in emergency as well as when I was in D3 the ward I to which I was transferred from emergency. I was in the ward just a day and a half. My temperature had returned to normal by then. My GP informed me that I had a non-specific infection. They couldn’t determine why my temperature had risen as it did. The docs don’t like it when they can’t pinpoint the source of an infection. I figured that it must be an artefact of the chemo meds or my myeloma. The literature on my meds states clearly that fever can be a side effect of the drugs. That’s what I’m going with. As an aside, Carolyn just took my temperature and it was 35.4˚C. It has been as high as 38.3˚; clearly, it’s all over the place.
My GP sent me home, thankfully, the third day I was there. They couldn’t determine any cause of my fever so there was no point in keeping me in the hospital where space is at a premium. I was very happy to be going home but there was obviously something haywire somewhere so I was a bit apprehensive about it. From this day on Carolyn would take my temperature and it would fluctuate wildly but generally settle around 36.5˚C. An effect of my hospital stay is that I missed my first week of chemotherapy. We had to reschedule my program so that my chemo would start the following week on Thursday. That first few hours of chemo was a bit difficult as my body became accustomed to being assaulted by these foreign substances, especially the Daratumumab. I spent seven hours the first day and seven the next at the Cancer Care Centre at the hospital while they infused me with Daratumumab. I had a rough go of it to start with dry heaving and whatnot but it smoothed out and I have had no undue effects since.
Throughout the month my temperature fluctuated between 36.5˚C and 38˚C. It never stayed at 38˚C for any length of time so now the issue for us was when to go to the hospital and when to wait for my temperature to go down to something more normal. Well, the decision was made for me this week when on Monday I started feeling odd. My temperature was high but I was in no mood to go back to the emergency department at the hospital so we decided to wait and see. On Tuesday morning I was not feeling well at all and stayed in bed all day, something I had not previously done at all. My temperature fluctuated some during the day but was higher than normal most of the time. I noticed that my legs were sore but that was nothing new. I ‘slept’ that night but I think that unconscious would be a better description of what I experienced. On Wednesday morning early Carolyn called 911 and an ambulance came and took me to the hospital. I was effectively paralyzed from the waist down and had a high temperature.
This experience in the ER was light years different from the previous one. This time I felt respected and was treated with kindness and care. The ER doctor called for some blood and urine tests. Everything came back normal. I could stand now and take a step or two but I was very unsteady on my feet. We all decided that I should go home.
The issue that dogs us now is determining the causes of my fevers. I spoke with my local oncology GP and we decided that I would forego my Daratumumab infusion this week to see if that might make a difference to my temperature fluctuations. The jury is still out on that one. More on this in my next post which will be sooner than later.