Well… where to begin? I suppose this update should include the worsening of symptoms. I won’t go into detail, but I’m sure most of you can figure those out from previous posts. The oncology doc called on Monday, sounding a bit excited about the results from the whatever test she was having done to see if I might qualify for immunotherapy. I met with her on Thursday and as it turns out… I do. She sort of explained the process, touched lightly on the side effects and said that as soon as they get the insurance to approve the treatment, we would get started. She then turned me over to a nurse practitioner who supposedly was going to explain it all to me in detail. She did not. She had me sign a consent form and turned me over to another nurse to show me around the area where the torture… umm… I mean treatment… will be done.
What I needed here was time to think. They were all very anxious to get started but I was not. I thought that I would have at least a week or so to think about it all while they dealt with the insurance. I was wrong again. They called the same day (Thursday) and said that they had received the approval to start. They wanted to start on Monday. I did not. I told them I had a busy appointment schedule that week (at least partially true… but they don’t really seem to understand… “I want to take some time and think about it”) and asked that we start the following week. Reluctantly… they agreed. They then tried to give me a late afternoon appointment. I refused to take it because I do so poorly in the afternoons and I didn’t want to start this process already feeling poorly. They reluctantly agreed to give me a morning appointment… told me that the actual dose of meds they will be giving me will take about 30 minutes. I was excited about that part until… until they started telling me that the ones administering the meds… worked all over the hospital and it depended on how busy they were and that the pharmacy sometimes took a very long time to get the medicine down to them and… and… and… in other words… I would be there for hours… waiting. My first clue was a rather full waiting room in the treatment area when they were showing me around.
Okay… none of that is good for business nor for my patience. If they think that I am going to sit there for hours for a thirty minute treatment without complaining or…. perhaps getting up and going home and telling them to call me when they find the time to treat a dying cancer patient… they would be thinking incorrectly. That’s just not the right way to treat seriously ill patients. Another thing wrong with the medical profession… none of them want to hire enough staff to properly care for the patients… but they sure want to keep those patients coming in with their money and their insurance cards. It’s just like calling Medicare or an insurance company or even a medical care facility when you hear… “Your call is important to us…” now… if you’ll just stay on the line for the next three hours we might take your call or we might just disconnect you and allow you to start all over… or maybe get so frustrated that you won’t call us back at all.
I don’t really feel like getting deep into the… what’s wrong with the medical profession or about the cost of it all today and I’m sure some of you will be thankful for me omitting my blather of all that. I will however complain a bit about palliative care. I asked my oncologist if it was necessary for me to go to palliative care and she replied by saying that “we work as a team.” I suppose that meant that she wanted me to continue to see them. So… I went yesterday to see the morticians… umm… I mean the palliative care folks. I was there for more than an hour and a half and all they did was ask a million questions that I have already answered at the previous appointment and then they prescribed some cough medicine. What? I don’t do cough medicine. Ever! Of course it will most likely be a very long time before I receive it any way since they are attempting to get it through the VA. Good luck with that one. Oh… the nurse came back in the room about fifteen minutes after completing all of her tasks with me… shut the door very quietly… and in a soft, almost whispering voice… scolded me for not returning my advance directive to them… dated and signed and witnessed. I don’t have to see them again until February… which may already be past my expiration date. Time will tell…
The immunotherapy drug they want to give me is called Keytruda. It’s supposed to be the best choice for the kind of cancer I have. If you Google the drug, the first thing you see on the official site is this:
Important Safety Information about KEYTRUDA
KEYTRUDA is a medicine that may treat certain cancers by working with your immune system. KEYTRUDA can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death. These problems may happen any time during treatment or even after your treatment has ended.
Well… that’s really encouraging, isn’t it? Then it goes on to give many, many more side effects, most of which are quite severe.
I’m pondering here….
I need time to think about it all.
They wanted to have a port put in my upper chest or neck to administer the drug.
No! I mean… hell no!
They said they will attempt to administer it by IV but they often have problems with that.
I need time to think… though there are those who think that I should just blindly follow their little set plan of attack like a good little lamb. I’m not feeling much like being a good little lamb at the moment… so they can forget that.
So… I’m going to go ponder… but while I ponder… I’ll be wishing you all a most beautiful day… and VERY GOOD HEALTH!