This is another post from a year ago. I just lifted it from the original post – I thought of going through and tidying it up a bit, but no, I’m just going to leave it as-is.
I’ll make sure to let you know when I’m posting about stuff to do with my mother…in case it makes you sad or uncomfortable or anything like that to read it. I’m not sharing this for reaction as much as I’m looking back at that time a year ago that I barely remember except for a handful of specific episodes. I may fill in some of the gaps, too, with explanation or other stories. I just feel like I need to do this – share it, remember it all, think about all that happened, both after her diagnosis and before.
I’m typing this on a laptop that belonged to my mother. She wanted it – in addition to the desktop Dell they had – so she could tote it around and write stories from her family.
But she never did that. She had the laptop for several years. I don’t think she ever typed a thing on it. I found a legal pad with a bit of personal history, but that’s about it. I have been having moments lately where I try to remember something about my grandparents or some other portion of that side of the family, and for the splittest of seconds I think “I’ll ask Mo-“ and then I’ll stop. I feel a flare of anger and a flare of sorrow. Or maybe it’s one flare in two colors.
Anyway, this piece below is exactly a year old, to the day.
Mom had an appointment with an oncologist this week. I worked half the day, then met her, Dad, my sister, and the guys who transported mom from the nursing home to the doctors’ office.
We were crowded into the small exam room – Mom on her industrial gurney (designed for transport in a vehicle), strapped in like Hannibal Lector only without the bite mask, and Mere, Me and Dad on chairs.
I filled out some paperwork that was supposed to have arrived at mom and dads house, contact information mostly, and consent to treat her.
The doctor went over mom’s information…carefully. Not sure, I think, of how much we knew or what we understood.
She said, a few times, that she didn’t know that chemo would help, that, in fact, it might make mom feel worse. She had done a bit of an exam, eyes, throat, felt her abdomen, looked at her legs, which were swollen, down at the ankles.
She reiterated that a couple of times. And it gave me the feeling that there was more she wasn’t saying. The doctor. I felt like the prognosis was more bad than good, not that there was a whole lot of good anyway.
She said a biopsy would tell them for sure what type of cancer it is, and that would determine what type of chemo and/or radiation would be best to use. Radiation was still a possibility because it wouldn’t have the side effects of chemo and it might slow down the tumor growth.
Cholangiocarcinoma is very aggressive. Who knows how long it’s been growing.
Anyway, it was weird, Mom turned to me a couple times and asked what I thought she should do. I handed that back to her…it’s her life, her call. She’s always said she didn’t want heroic measures…and that’s where it stands now.
She’s still scheduled for the stent replacement on the 23rd, and when they do that they can do a biopsy and we can maybe have some radiation done. Chemo, in addition to possibly not working and making her feel sick, would also involve at least weekly trips to the hospital for the injections, and frequent follow-ups with the doctor. A lot of travel.
So that was that. Oh, no it’s not. She also brought up hospice, and we might want to get that in place as well.
Another little moment – the Dr brought up mom’s alcohol use (or misuse, or abuse, take your pick) and mom said, very confidently, that she hasn’t had any alcohol in ages. Ages. Mere and I both called her on that. We’re the cranky Greek Chorus in Mom’s life of denial. Anyway, it’s two months, not ages.
So on the way out we shook hands with a woman who’s kind of a liason for patients and the office and families. Mere talked to her more than I did, only because they spoke the same language – medicare and related stuff. She – I don’t remember her name – was extremely nice, warm, on top of things.
The whole office was like that.
There are so many good, kind, warm people out there. There are idiots too – case in point, that annoying doctor from the other office – but a lot of wonderful people as well. The guys who transported mom – just nice guys.
We all went our separate ways, mom back to the nursing home, dad to his house, mere and I back to work.
And I just kept feeling like there were things unsaid.
So on the way home I called the oncologist’s office and asked for a call back, to discuss the unsaid things, like prognosis.
Dr. P called back a couple hours later, and I went outside to talk because I haven’t told the kids yet.
And she said what I kind of knew, based on what I’d read – that at the outside, with no complications, Mom’s got maybe six months.
But she’s got a lot working against that. She doesn’t eat much. She’s anemic. She doesn’t exercise at all – and this has gone on for YEARS, the fight to get her to walk, to do her PT, to MOVE. It’s been such a losing battle. So there’s that. And the swelling in her legs…the possibility of a blood clot forming and traveling to her heart…the possibility of infection – maybe from bedsores, or from the current stent…the stent could get blocked again, or the next stent could get blocked, which would mean another stent would need to go in. More procedures – more invasive procedures. She could fall into a coma.
She could have as little as a month left.
I called her oldest friend – one of her only remaining friends – that night to update her. It was a hard conversation to have. She said she’d call me back soon. She’s thinking of coming up.
I have a few other people to call, I think. But, sadly, over the years Mom has shut doors on long-standing friendships. There are only a couple of people who still call the house to say hello and to check on her, on dad. They get in touch with me if (like recently) there is something wrong with the phone at mom and dad’s house. Two people. Interestingly, both were nurses. That’s not how she knows them – one she’s known since they were five – a lifetime friendship. The other was married to my dad’s uncle, so she’s sort of a relative that way but not by blood.
But I digress.
One minute I’m fine, the next I’m not. I have times where I can talk about all this matter-of-factly, without emotions spilling over. And then other times I can’t even get a word out without my voice cracking.
Last night was the elementary school christmas concert. alex was in it. During most of it I was annoyed at this tall kid who showed up late and stood next to his mom and IN FRONT OF ME and a shorter older woman. I kept glaring at him. He’s in the eighth grade according to alex, and he is growing a mustache…much like the one his mom has.
Anyway, I fought off my short-person rage, moved to a different spot, and focused on watching Alex and listening to the songs.
And then, out of the blue, during the last song, which was about drinking hot cocoa, I suddenly felt tears welling. I don’t even know why! Hot cocoa? But then, why not?
It’s my mother. And mothers are everything. Every little bit and piece of my childhood, just about, connects to my mother. So why not hot cocoa?
I’ve got today off. It’s a paid personal day. I need it. My boss thought I needed it. I need time by myself. Time to be kind to myself and not take care of anyone else.
Time to cry if I need to.
Maybe I’ll go make some hot cocoa.