Swiss-Cheese Memory

There's a lot I want to get down and I've already had at least one suggestion, but I think I should go back to the beginning before I forget the details. I know I'm already forgetting some, probably important ones, but Christine was there for nearly all of what I'm planning on talking about here, so hopefully between the two of us we can remember most of them.

I guess I should start with what I knew before the 18th. My mom's had the same doctor, Monica, for a very long time now and the relationship has been what I would call very bad for quite some time. It wasn't always that way, I do remember a time when Mom was happy with her doctor, but I honestly can't remember when that was, so we'll call it 'years' and maybe 'more than a decade'. A long time.

Let's also establish a few facts. Mom's diabetic and has been for a long time. Also not as long as I can remember, but I do remember being in junior high school while she was testing her blood sugar levels in the mornings before breakfast, so I think that one we can safely call 'decades'. The good news is she's Type 2, so she doesn't need to take insulin injections. She's also had occasional problems with high and low blood pressure at different times in her life. I think those are the most relevant bits of her history.

Over Christmas when we were home for the holidays Mom was talking about all of the pills she's on and saying she thought she was over medicated. Well, Mom would never use the phrase 'over medicated' but that's what she meant by saying stuff like "I'm taking all these pills!" and "She's got me on so many pills!" and such. So Christine started asking her for the run-down (and here's one of those probably-relevant details that I've forgotten, I know it was a lot but I don't remember the numbers, though I do remember the discussion turning toward some of the prescriptions treating things that were known side-effects of other medications that she was on, which seemed a little to me like wearing gloves all the time because you bite your nails).

We suggested that she should go talk to Monica again and try to get the number of prescriptions lowered but Mom ... well, Mom's got a particular way of arguing that I've come to recognize over the years. (For the record, I see it in myself too and I really dislike it, but it can be frustratingly effective at times.) She started by explaining to us that Monica wouldn't listen to her, or that she couldn't talk to her. We countered that it wouldn't hurt to try and that ultimately Mom was the patient and she needed to at least be able to get all the information she needed to determine if she was going to accept or refuse treatment. She said something about another medical clinic opening and wondered if she could get a second opinion. Of course the way she presented it to us was that she wished she had another doctor that she could start fresh with and that there was another clinic opening but she didn't think she could just change doctors like that, but I'm convinced this was her way of asking us if she could do just that. Christine and I were both totally in favor of this idea and told her that she should call up right away to see about getting in for a consultation.

Actually, I wanted her to call right that minute if she could, but that's because in our neck of the woods these days, by the time you hear through the grapevine that a new doctor is taking patients, that doctor's dance ticket has been filled until sometime just before the sun goes nova, but that's another topic completely.

Mom listened and agreed in her particular way that I knew meant she'd considered our arguments reasonable but ultimately irrelevant and she was going to continue on with her own non-plan as if we hadn't discussed it at all. I kept on it a bit more, trying to elicit a promise of some kind that she would both call this new clinic and confront Monica about her prescriptions but I don't think I got anything more than a little laugh and maybe an 'okay'. Anyway, it doesn't matter, neither of those things ever did happen.

After Christmas and as the winter turned into spring Mom told us that she'd been getting progressively weaker and eventually she had talked to (negotiated with?) Monica and had some tests done. They were beginning to fear internal bleeding because of some of her blood work results. They'd speculated on stomach ulcers and intestinal bleeding, among other things I'm just forgetting about now, but the final conclusion was that mom was suffering from diverticulitis. Monica told her she would have to avoid anything with seeds, among other things, and stick to an even more regimented diet than usual. One of these days I'd like to go back and see if there were any more details in what I heard then that would have pointed at the real cause, but at the time I was just glad that we had an explanation and it seemed to be a problem that was manageable. Christine did a bunch of reading on the subject and sent Mom a pile of reading to do and that was kind of the end of it.

In June a couple of my closest friends from way back came to visit us and they offered to bring Mom with them when they came. I didn't know at the time just how much that visit would mean to me and I really can't describe how much it meant to have Mom up here then -- hell, I didn't even realize how important that visit was until well after -- but the thing that stands out most clearly about the days leading up to it was one little warning Christine offered to me.

"Brenda says your mom has lost a lot of weight. She asked me to tell you before you saw her."

I'd like to say that was the tip-off I needed but honestly it wasn't. It scared me, yeah, but I never for a second believed there was anything really wrong. I remember thinking that the medication had to have been having yet more negative side-effects. I knew my mom had been having a harder time eating lately and she was feeling weak, but I (mostly) dismissed it because ... well, I probably didn't have any better justification for not worrying than "she's my mom", but whatever I told myself it seemed to have worked because I didn't stress too much about it.

It was the insidiousness of this thing that did it, I think. I mean, I only ever saw my mom twice a year, at most, and so what if she didn't eat much? Or if she was moving slow? She could never, as long as I can remember, eat breakfast and for the last few years she'd been eating a lot less than before. She always walked slowly, so much so that I'm sure Christine has grown tired of me calling to her and scowling when the three of us were out somewhere and she'd get to far ahead of us. So now that Mom was eating even less and moving even more slowly, so what? She's sixty-five now, it happens.

We talked again about her medication. Nothing had changed there and Mom still hadn't talked to Monica about it. We talked to her about the other clinic. Nothing had changed there either, Mom hadn't called. This time, though, I think Christine made an impression because after Mom went back home she did talk to Monica and got at least one (two?) of her prescriptions taken off the list.

Now the visit in June was a little concerning, because Mom had lost a lot of weight and she was obviously moving more slowly, but it had still been six months or so since I'd seen her and the details of what she had been like were soft around the edges. So the fact that she got tired after a relatively light day where we got up, went to mass at a Ukrainian Orthodox Catholic church, met Steve and Brenda for breakfast after, went to the garden centre at Canadian Tire for some seedlings and gardening supplies and had dinner, well that seemed odd but nothing to panic over.

It was July 18th that first truly hammered the point home. Five weeks and four days had passed since I last saw Mom and I could hardly believe my eyes.

On Saturday, August 1st, we were visiting my cousin Sheila and her husband, Kenny, and I were talking alone in the kitchen at one point. He looked at me with probably the most serious look I've ever seen on his face (I think the thing I'll always remember about Kenny to my dying day is the way he tells a story and the sound of his laugh, he's always got laughter in his eyes) and he whispered to me: Jesus, it's like she turned into an old lady overnight!

It wasn't overnight, but she went from being 'slow' to 'ethereal' in less than six weeks, which is much the same thing for all practical purposes. A couple of times I heard her say "I'm so glad I got up in June because I couldn't make that trip now" and I don't doubt a word of it. Her weight loss hadn't simply continued, it had accelerated. She was eating less (next to nothing, see the other posts). She could hardly stay awake into the evenings and for the first time in recent memory, possibly ever, I rolled out of bed before her while I was on vacation. And for anyone who knows my normal habits at work, this wasn't me getting out of bed at my regular time, this was me on vacation-time. I'd be getting up at 9:00am and mom was still in bed. That has never happened.

Okay, so what was going on is no mystery now so I won't belabor the point any more than that.

Mom asked us to help her clean out her place, sort through old photos and personal papers and such and just generally try to prepare for the eventual day when she would have to move out of her place. That day came sooner than we'd ever expected but that's also the subject of another post, so I'll skip it here. That kept us inside a lot -- again I have to thank Brenda and Steve for giving me a small distraction while we were hip-deep in that, me showing up at their place at 10:00pm to play cards for two or three hours after Mom went to sleep surely wasn't the most responsible thing to do, it probably won't win me any Son-of-the-year awards, but it did get my mind off everything else at least for a bit and for that I'm grateful -- but we did have one chance to meet Monica on Thursday (I think, the days of the week from that time are all muddied now).

Alright, into the home stretch for this post, I think.

I went into the appointment with what I thought was an open mind and three clear objectives. First, I wanted to talk about the drugs that she was on and make sure we were eliminating anything we didn't need. (That actually went reasonably well because Monica struck another medication off the list right there, though it was a small victory since Mom had stopped taking that one a couple of weeks before.) Second, I wanted to know what was going to happen over the next few weeks in terms of meeting with Dr. Rendon in Halifax and then what were the next likely steps after that. Finally, I wanted to know what we were going to do about mom's appetite and her weight loss because by my expert reckoning she didn't have the strength to undergo surgery or chemo in her current condition anyway, so we needed to address that RFN. Christine, as always, was a much better listener and managed to ask quite a few questions based on what Monica said to us, most of which I think I've already covered in earlier posts -- about the types of treatment, about the drugs used, about the nature of the cancer and the test results -- and most of what I learnt has already shown up here too. Mom got a prescription for steroids which aren't working miracles but are doing a damned good job at getting her to feel like eating again. She went to see Dr. Rendon and on this coming Wednesday she's going to see Dr. Kahn and then we plot our course from there.

The thing is, Monica came off as a pretty reasonable and sympathetic doctor to me. During the discussion Mom brought up the possibility of refusing treatment altogether (she was, and still is, very afraid of surgery to remove the tumor on her kidney) and Monica urged her to go ahead with it if at all possible. I swear I heard her voice crack a couple of times while her and Mom were having that exchange and I thought I heard a little note of panic there. So for everything else I'm going to say about her here and in the future, please remember that I do believe she wants my mom to be okay, she really wants her to get through this with the best possible quality of life for the longest possible time.

Here's the down side, though. She asked Mom if she was still testing her blood sugar. Mom said she was and that it was okay (meaning something greater than about 3.5 mmol/L and less than about 6 mmol/L). Monica came back and said that she thought the machine or the strips must be bad, though, because when they tested her for her blood work they found Mom was at 16 and 18 for the two days. Mom asked how that could possibly be since she wasn't eating anything anyway and Monica said that since her body was converting all of the stored fat to energy it was probably causing her blood sugar levels to rise dramatically and that Mom's machine should have shown that too.

That was what led to me eventually making her cry at home later on, because when I asked her about it she told me that she hadn't been testing her sugars at all and that she just didn't want to tell Monica that because it would only make Monica angry.

Other than that, though, it was a pretty positive meeting with Mom and Monica, which I might have taken to mean Mom was exaggerating about some of the other stuff if I didn't know what happened on Tuesday, July 14th.

The 14th was the day when Monica called Mom to come in and discuss the latest test results. These were the ones that contained the words 'terminal' and 'kidney cancer', among others, I'm sure. I don't have any idea how doctors are trained to handle giving news like that, I know I couldn't do it, but I cannot imagine the training consists of:

1. Call your patient and ask her to come in for an appointment, just like you do every two or three weeks anyway.

2. Do not suggest they want to bring a friend or family member along.

3. Drop the news in their lap like a dirty sock.

At least I hope that's not the training because if it is, it sucks. That is, however, exactly what happened to my mom. Monica's assistant called Mom, told her Monica wanted to see her that afternoon to discuss her test results and that was it, end of conversation.

It's not an isolated incident of baffling poor judgement on her part, though, either. A few weeks previous Monica had apparently out of the blue decided that Mom should go on some new medication so she called my mom from a wedding she was at. Mom didn't want to take a prescription over the phone that appeared to occur to her doctor on a whim and -- while still at the wedding, mind you -- Monica apparently started trying to bully Mom into taking it because if not she'd end up on insulin.

There are other incidents I've heard from Mom or my uncle or Mom's friends but I don't remember enough of the details to reasonably relate them here. The end result, though, seems clear: Things are not quite right there.