So, you think a lot about where you are going to die when you have terminal cancer. All the obituaries say that people who lose their "battle" with cancer die at home, surrounded by family, which has always sounded vaguely ominous to me, kind of a threat. Who wants to be surrounded at the end?
I picture lying on my bed, looking up at all these blinking coyote eyes, all of them waiting for me to expire. Even creepier, in my fantasy, there is somebody, possibly my sister, urging me to "let go, that it's okay, you can go."
Lord help me. My family wants to kill me.
In reality, I think I'll probably end up all alone in my bedroom, and I think that people might even forget about me until that dead chicken smell starts wafting through the house.
Since I live with only men, maybe not even then.
I have precedent for that idea. My house is configured such that my bedroom is at the very back of the house, connected only by a long hallway buffered by a bathroom. It was an addition, done years before we moved in. If the bedroom door is closed, it's almost like being in a different home. You cannot hear anything that goes on out in the living spaces, and more concerning, nobody can hear you, alone in the bedroom.
Even my internet doesn't go that far - I had to put in a repeater so I could get wifi in that room.
When I got c-diff, I spent two days seriously ill at home before I went to the ICU. The first day, I stayed in bed all day, weak, in pain, unable to get up, and very very thirsty. The only thing that happened was at some point, my husband closed the bedroom door, cutting me off from the world and leaving me helpless and alone. I took the opportunity of him being close to yell at him to come and help me (I really needed water) but he didn't hear me. While my yell is often quite strong, possibly strong enough so that the neighbors would be able to hear me, at that time it sounded more like a whispering kitten. I was too weak to really do anything, and that included sitting up. Naturally, my husband didn't hear me, and he didn't check on me. I didn't see him the entire day, until he came to bed that night at about 10:00.
I scolded him as much as a person full of sepsis poisoning her bloodstream can do - reminded him to please check on me during the day if I was ill; that I was not a normal sick person who just needed extra sleep. He got me some water that night, which I managed to take a sip of before I passed out.
I was not able to get up the next day either, and he forgot me again until about noon, but after I did what nagging I could in my debilitated state, maybe with a tear or two, he came in and checked on me every hour or so thereafter, bringing me a cut up apple and more water. Of course, nobody knew how seriously ill I truly was, we just thought I had the flu. But, isn't that possibly the way it can go when you have cancer? You can be fine one minute and then you die of a flu the next?
When my temperature climbed that afternoon, diarrhea started, and I called the doctor, we went to the hospital, and that's when we knew how bad off I'd been and how close to death I really was.
Death had been standing at the foot of my bed and nobody came to chase him away.
Afterwards, we had a little talk about this situation. Me and my husband, I mean, not me and death. I reminded him that I do not have a normal healthy body, and that I don't think I should be left alone all day if I go to bed sick, and that the bedroom door should be left open so I can hear things and call if necessary. If I'm sick enough to stay in bed, than I think somebody should check on me once in a while; make sure I at least have water, am still breathing, those simple things you do for each other in a marriage.
I realize he got the short straw in this whole deal and he probably does want to just shut the door and forget it all, but I'm still here so the door has to stay open.
He seemed to understand my nervousness about this; how very helpless I was being critically ill and not able to care for myself to any degree. It happened so quickly too - I was entertaining guests for Thanksgiving dinner Thursday night and Friday morning I was near death. We learned, or I thought it was a "we," that there are no more guarantees and caution should be the norm.
But learning is difficult in some people who shall remain nameless but who wisely did not make the career choice to be a nurse, and we have exhibit A: this weekend. I am having my normal stomach pain, for two days now some new spinal pain, and some constant low-level nausea. This morning I woke up with a headache. I got up at noon-ish, drank some coffee, took some headache and nausea meds, and went back to bed. My husband came, and I heard the bedroom door close, and once again, I was locked away from the family with no way to call for help if I needed it.
Fortunately, I am not as sick as last time so I got up a couple of hours later when the headache subsided, and here I am, picking pieces of my hair off my keyboard.
But, if I hadn't gotten up, I know I wouldn't have seen him until a) he wanted to know if I wanted to watch a TV show with him or b) bedtime.
I am a unique combination of person who horriblizes everything and also feels like she's going to be fine. So, while I lie there I think that this spinal pain is probably mets and if I move wrong I'm going to be paralyzed, and that's why somebody needs to check on me and bring me water - I also am planning for guests next weekend and putting together my wardrobe for the week. Maybe that confuses my family; I don't know.
Yes, I do realize that death is typically a long process, and it starts with not being able to eat and drink and ends up with the coyote eyeballs, but after having an experience like fulminent c-diff colitis and being in septic shock (and fully awake and aware the entire time) I also know that there are can be sicknesses in between in which the person needs help, and during those times, a gal gets thirsty, even if she can't walk.
So, I'm going on record in saying that if I have to go to bed in the middle of the day because I don't feel well, I want somebody checking in on me every hour or so to make sure I am a) breathing b) have water c) cancer hasn't broken through all my bones and left me lying helpless as a jellyfish.
Also, if you know who to call to have this family surround sound system put in, let me know.
As long as it's possible to turn it down.
Post stem cell transplant Day 62
2 weeks ago