Quick Update

I've been neglecting the blog since Thursday. It's mostly because it's been a few days where there's so much going on I just don't find the time to write it all down, which I know I'm going to regret eventually since I'll have forgotten some of the best parts.

Thursday was a pretty rough day, actually. Mom's decline has been pretty evident since we were able to do the Skype thing on Tuesday and even though we'd planned to let her sleep most of the day so she'd be well rested when Trish and Jim arrived, I was getting pretty concerned about how she was doing. I stepped out at lunch to pay some bills and cut her power, phone, cable and interet service and when I came back she seemed pretty awake and alert, which was really good. But when I got talking to her a bit I realized she was quite confused, she thought she'd slept all night long and it was the next morning and even though I told her a few times that it was Thursday afternoon not Friday morning, she didn't remember it for more than a few minutes.

When Jim and Trish arrived, though, she was asking for slices of apple so I was pretty happy all the same. I don't know what to say about meeting my sister face-to-face for the first time. It should have been an incredible experience, but a lot of the time these days I'm still in that mode that I mentioned earlier, where the volume seems to be turned down on everything. We hugged and talked for a minute and then she went in to see Mom and honestly I've forgotten most of the rest of the first few minutes entirely.

We visited with Mom until about 8:00pm, by then she was really tired and fading in and out, so we went to grab some food and drinks down at the Heritage Pub where we really got to talk for the first time. It was good. Like, very comfortable conversation with someone you've known for a long time. Obviously not all my life, we both are missing lots of details and lots of stories, but that'll come. I didn't think it was at all awkward, though, which is really what I was most afraid of leading up to the meeting.

Anyway, popped back by the hospital after that just to say hi and they went to Janet's and I went back to Dad's place. It was only about 10:30pm but he was already in bed. I don't blame him, this is wiping me out too.

Friday was a bad day. Nothing to say about it except that. All morning Mom wasn't with us at all. When she did wake up she was confused and slurring and at that time I was sure we wouldn't see the end of the weekend. Trish, Monica and I had a long conversation about what was happening and what we were going to do and, against Monica's advice, we had her present all of the options to Mom and let her decide what to be done next. Whether we would stick with the current IV fluids, which the nurses think isn't going to be sustainable for much longer, whether we would remove all IV fluids, or whether we would try to install a pick-line(?) or mid-line(again, ?) IV feeding tube and consider staying on her current IV fluids or IV feeding (TPN). Mom couldn't make a decision then and Monica promised to return around noon or 1:00pm to discuss it again.

The rest of the morning was mostly Trish and I talking about what we should be doing since it seemed like the decision was falling to us.

We'd decided that based on what we were seeing, Monica was probably right and everything we were doing was just dragging out her suffering and we should be removing the IV fluids too. Since we'd turned that decision over to Mom, though, we had to wait to hear what she'd say to Monica when she came back.

I'm lacking the ability right now to put into words how painful this decision was for us and how long Trish and I spent alone in the family lounge circling around what seemed to be the inevitable decision for us. I wish I could explain what it was like but my head isn't in it right now and it may never be, I don't know.

When Monica came back, though, Mom was a little more aware of herself and after a conversation filled with silences that nearly killed me she decided to try to stick with the current peripheral IV fluids and then make another decision when they lost that line. I don't know everything I was feeling then but I know after we left and were driving to get something to eat we were thinking the same thing. That in turning the decision over to Mom we may have made a terrible mistake by just prolonging the bad parts of the time she has left.

I need to be perfectly clear on this, though. Neither one of us thinks that anymore.

We went down to Jimmy's to get burgers and fries and I called Christine. I was sure the time was short enough that she needed to get here sooner rather than later if she wanted to see Mom before the end, so I told her I thought she should start making arrangements for Brazen's care and look into flight options. We didn't talk too long, but I said I'd check in with her later if there was any change.

By the time we got back to the hospital it was almost like we'd gone back in time a week. They brought Mom's dinner, which included a bowl of blueberries and she didn't just take them when offered, but she asked to try them. I think she ate maybe a half-dozen of them, a trivially small amount for most people but huge by our current reckoning, and then she tried a bite of one of those two-bite brownies Trish and Jim had brought with them. Not much, but anyone reading this knows by now that I'm thrilled with anything. Better still, we stayed for another couple of hours and during most of that time Mom seemed to be mostly paying attention to the conversation and even participating. She hasn't seemed that good since Tuesday.

Anyway, we took off for a bit around 6:30pm or so and rather than looking for supper, none of us were even remotely hungry, we took a drive down to Cavendish beach and just walked along the shore for a bit, talking and watching the nut-jobs swimming in the ocean with 16°C air temperature. Christine called me while I was there and told me she'd already deposited Brazen at the cat hotel and was planning to drive to PEI in the morning. I don't really like the idea of her driving all that way on her own but I really want her here and it would help if she could bring stuff back when she goes.

So we left the beach, went to Cows for some ice cream and then drove back to the hospital. That was about quarter to nine when we got there and Janet was still in the room and incredibly Mom was still kind of awake and feeling like talking. We stayed until about quarter after ten when she asked us to leave so she could sleep.

Today's been more of the same, too. We went to Janet's for breakfast and didn't get to the hospital until about quarter to ten but Mom was seeming animated and engaged and generally better than she's been for most of the week. Other than a few drowsy periods today that's been pretty much the pattern. She slept for a bit in the early afternoon but Dan brought Kelly by and she woke up and seemed to brighten when they were here. I'd love to talk to Kelly alone, knowing what Mom's told me about her relationship with her parents, but that'll have to wait for another day. Maybe I'll find her on facebook sometime and see how she's doing, Mom still worries a lot about her and while she does tend to worry about things she doesn't need to, I get the sense that she's justified in her concerns about Kelly.

Anyway, it's now about dinner time so I think we're going to go out and get something to eat then come back and spend the evening here. There's more to tell but I'm going to have to hold off on it, Mom just said about a paragraph ago that she'd like to have a nap so we should get out.

One Week In

It doesn't feel like I've been here a week yet, but at times I feel like I've been here all summer. I guess in a way I have.

Last night was bad for Mom. Another of the tumors started bleeding, maybe burst, they're not sure yet, and so she lost some amount of blood in her urine. The nurse last night thought it was a lot, Monica didn't think it was as much when I was talking to her this morning, but they're doing tests to confirm. Another blood transfusion is on the list of options being considered right now. It was bad enough that by the time I got in to the hospital this morning they had a catheter installed and the urine collection bag clearly still has new blood flowing in. Now we're into the realm of risk assessment, I guess. Monica had Mom on a mild blood thinner because there's a risk of clots forming in her legs and travelling to her lungs since she's not moving on her own at all now. Unfortunately, the bleeding into her bladder is real now and the blood thinners are at best not helping, at worst contributing to the problem. So Monica said she's decided the best course of action right now is to stop the blood thinners, risk the clot and try to manage the very real problem of internal bleeding.

It's been mercifully quiet here this morning. Normally it's nice to see the flow of visitors coming in, but with her so weak this morning and having gone two nights in a row without decent sleep, it's good that today she can just snooze and hopefully regain her strength. My sister should be arriving in the next few hours, she thinks by about 6:00pm but based on where she seems to be from the text messages I think she may be here sooner than that, and I really hope Mom is feeling strong enough to enjoy the reunion. It'll be the first time I've ever met Trish face-to-face, so this is going to be a pretty big day. Last week Mom made it clear to me that she wanted us to meet here, in her room, so she can be there to see us together, so we're going to do the best we can to make that happen.

To Anyone Reading

I just wanted to say thank you for leaving comments, for the mail to my home email and the messages on Facebook and for just reading and being here through this with my family and I. I don't reply to most of the comments and I only respond to a small amount of the email, but I do read them all and I share them with Mom whenever I see one for her.

So thanks, I really appreciate it and I wanted to take a moment here to let you know.

Nice Day.

Today really was a nice day, in both senses.

The first day after Hurricane Bill blew through was still spotty, cloudy by times and a bit drizzly, but today the clouds broke before dawn and the humidity was completely gone. So yeah, the weather was nice. Warm but with the breeze that I always associate with summer days on the Island, so pretty much like any late-August summer day.

The big news is everything that matters, though. In a very real sense today was the first nice day I've had in a long time. I got up with the alarm (well, the second alarm, but everyone's entitled to one free 'snooze' I figure) and Dad wanted to go out to breakfast together. I thought it was perfect because my father and mother-in-law (Hi Julia!) were coming today to visit Mom in the hospital and I was going to ask Dad if he minded putting them up for the night and I'd spend the night at Steve and Brenda's place.

Turns out he was in a sermonizing mood this morning, though, and I guess he wanted an audience because most of the time we were eating breakfast he was lecturing me on one thing or another, usually about his own health taking the occasional detours into the land of what's wrong with all of the doctors in PEI and occasionally going as far afield as how bad the winters are and how he didn't know how he was going to make it through another but how he and his girlfriend were supporting each other through thick and thin and how everyone should always do that. I think it was some sort of back-handed attack on Mom for leaving him again, those seem to come as naturally to him as breathing and I genuinely believe he doesn't even realize he's doing it anymore, but it annoyed me just the same.

Some good did come out of it, though. One of the little verbal cul-de-sacs he wandered down was how he felt bad that he wasn't visiting Mom more in the hospital but that he didn't know if she wanted to see him and how when he was there it really tore at him to see her like that. Before I could talk any more about that he'd wandered off into how Mom's doctor was also responsible for his sister no longer being with us and such, but the little bit of an apology and regret was there all the same and I'm not going to forget it. He does still care about her and it really does hurt him to see her like this, I'm choosing to focus on the nugget of positive in the heaps of junk that he sends out at times like this.

Anyway, I'd been hoping to catch Monica during her rounds this morning but my breakfast with Dad ran long and by the time I made it to Mom's room it was nearly 8:20am and Monica had been come and gone. I was a little pissed, but I decided that there was nothing to do about it and I'd see her tomorrow anyway, but I got a second kick at the can. A little before 9:00am the nurses came to give Mom a shower and I slipped off to grab a coffee from the cafeteria and there was Monica walking down the hall toward me. We talked for a few minutes, she wanted to know my impression of how Mom has been doing and told me what she thought. Basically we both agreed that yesterday and today she's seeming quite a bit better, quite a bit more alert and in much better spirits. When I came in this morning she had been eating some toast with a little strawberry jam on it -- she ended up eating nearly half a slice -- but when Monica was talking to her she had been trying to eat some Rice Krispies too. Granted, she only ate maybe two teaspoons full, but that's awesome right now. Monica said that if she still seemed to be doing this well tomorrow they'd probably try to take her off the IV fluids and see how she does.

Then we started talking about Trish and her plans to get to Summerside. I said that I was sure Trish would want to talk to her but that she probably wouldn't be arriving until Friday afternoon, but before we went much further on that, Monica cut me off and said that she thought Mom would be in fine shape to see her by then. So I took the opportunity to ask again the question I hate asking but that I've at least gotten one honest answer to from her before. How long do you think she has, based on what you're seeing? She gave me the textbook answer, which I didn't really care for, but she tacked on that she thought it might even be a month or two now, which is far better than the pair of weeks she had told me to prepare for late last week.

So that's good too. I came back to the room and spent the next couple of hours with her then Gregory and Zita came in and I slipped out to the bank to deposit the money we got for her furniture into her bank account. I think Mom had expected me to keep the money for her furniture, she had sort of said something about that before when she tried to give it to Gregory for helping her out and he refused to take it. Doesn't matter, though, it's for her stuff, it's hers until she doesn't need it anymore. But the nice thing about that part is I couldn't do the deposit to her account from my bank card so I went in to see a teller. The teller asked my name and I told her and I explained that I was trying to deposit it to my mother's account and I had a joint account with her but I didn't know the number. She asked me my mother's name and I said "Phyllis" and she looked up at me, smiled and said "Well of course it is!" I can't remember her name for the life of me, even though I tried to commit it to my swiss-cheese memory at the time, but she's one of my Mom's friends down at the bank. We spent the next five minutes or so just talking about how she's doing.

I don't even know probably a quarter of the people who know and love my mom here.

Anyway, back at the hospital, Reverend Wilkie had managed to get ethernet run to Mom's room and so I fired up the laptop and the webcam and like magic the skype-fairies brought me a connection to Ryan, my nephew. We didn't get video working and voice was spotty but it was enough for me to know that we would be able to get skype up and running so Mom could talk to them all this afternoon. When I went out for lunch I grabbed a wrap at Subway and came back over to Mom's apartment to use the internet there. After maybe half an hour of farting around Jim (my brother-in-law) and I got it working so we could see and hear each other and we set up a plan for them to contact us as soon as everyone was home.

Another victory in a growing list for the day.

I got back to the hospital and found mom had company again but while we were talking Steve's mother came in to say hi. I know Mom didn't recognize her at first but as soon as she said her name Mom figured it out. She visited for a few minutes and said she had come by to bring me some lunch. I thought she was kidding at first but it turns out she was serious, she was thinking I probably wasn't eating all that well, with all the time I was spending at the hospital -- she's right -- so she brought me a bag full of food, all home-made I think. I'll skip ahead to supper time here briefly and say that I couldn't believe what she had brought me when I opened the bag. Salad, shepherd's pie, a bottle of water, a blueberry muffin, an oatmeal cookie and a fruit salad (I think that's everything, there was a lot in there). I know I'm getting extra emotional here lately but I started misting up a bit while I was heating up the shepherd's pie, just the incredible kindness everyone's offering can be a bit overwhelming at times. I can't thank everyone enough. Anyway, I ended up eating about half the shepherd's pie, the whole salad and the muffin (Actually, Mom even had a bite of the muffin, she said it looked good and after a minute of careful consideration decided to try a taste when I offered it to her) and I'll have the rest for tomorrow.

Okay, so then there was the call with Trish and the kids. It worked exactly as it was supposed to. Well, not exactly but as close to it as I could ever expect. I set up my laptop and logged in to skype and about twenty to five they called us (for the record, I really dislike using the term 'called' for what skype does, it has practically nothing to do with telephone technology, but it's the way they want to describe themselves so I guess they get to name it whatever they like) and Mom spent close to an hour talking to the kids and my sister.

Oh, and if MarkA is reading this, I owe you at least one thank you for all of the compiz-poo you bullied me into learning. With ccsm, it took me no time at all to figure out the hot-keys to smooth scale up the micro-sized skype video window to full screen size so my mom could see them clearly. For the rest of you, don't worry if you have no idea what that paragraph is about, it's basically an in-joke from work.

Anyway, the even better news from that is Trish and Jim have the papers they need and they're leaving tomorrow morning for the Island, they expect to be here on Thursday afternoon / evening. George and Julia told them, too, that if they can make it as far as Fredericton tomorrow, they can stay at the farm. That would be in the suite they built for me to rent when I was living there my first year out of University. It's just one good, heartwarming thing after another today.

So I left the hospital about an hour ago, earlier than I planned tonight but Mom was already tired from the day and her friends Valerie and Libby (the mother of my best friend growing up) were there and I thought I could trust them to not stay too long and I'd let them visit in private. So I came here, to Mom's apartment again, and decided I had to share all of this with you. I don't remember the last day I had like this and I don't want to forget it. These are really the ones I started this blog for in the first place.

Now I think I'll check on Steve and Brenda and see what they're up to and probably bring Bailey another Timbit in a crumpled paper bag.

My Dad

Yesterday was Saturday and was really busy. I got in a bit late and missed the doctor that was doing the rounds (Dr. Royce? Something like that, I can't be sure from the way Monica pronounced it and I didn't think it really mattered anyway since this doctor wouldn't really know anything about Mom's case anyway), I guess she was in pretty early too. It was around 8:30am by the time I made it in and they were already done with breakfast and morning pills. Today was much the same story, I was late (later this time, I slept until a little after 8:00am so it was about quarter to nine before I got here) and missed her again. No big deal though, I guess, since even Monica likely doesn't have much to say to interest me anymore. I expect when Trisha gets here there'll be conversations I'm more interested in hearing, but most of what I needed to know I've already been told and it's not the sort of information that really solicits more questions for me.

Yesterday morning, though, was not good. Another one of the little incidents I don't want to tell Mom about because she really doesn't need to hear it. I got up in plenty of time yesterday morning but as I was eating breakfast at Dad's place he sort of seemed to be opening the door to discussion about the headstone question again.

Okay, I'll back up a bit, I think I left something important out here.

Mom wanted to share one with him and (I think I mentioned before that) I was going to ask him for her. I never quite found the right time -- is there a right time to ask your father if he wants to split the cost of a headstone with his estranged wife? Probably not -- but I called him last Wednesday and told him I was coming back to the Island for another visit and I'd probably be staying with him. I also told him that he should try to get in to visit her if he could get a chance. It turns out when he came in he told her that I'd said she wanted to see him. She took that to mean that I'd thought they should talk about the headstone thing themselves and not get me involved -- absolutely not true, but an understandable mistake -- so she told him what she wanted. I guess they talked about it and he said no, that he didn't know if he wanted to be buried in Grand River or if he wanted to be buried with Shirley (his current girlfriend) or what.

I found out about all of that on Thursday when I was talking to Mom first. She sounded upset about it and I said I might just mention it to him again once more when he'd had a bit of time to think about it and maybe he'd warm up to the idea a bit. So that's what happened yesterday, he seemed to be bringing it up. It was something like "has she told you about anything she wants to do" and a couple of other final arrangements and will and testament type stuff. I said no, not really, that we hadn't talked about that yet and he started talking about the pain we went through with my Uncle Herbie's estate, such as it was and how it was better to have it all taken care of before the end. So I thought this was him edging up to the headstone conversation again.

I told him that the only thing she'd told me is that she wanted to share a headstone with him and that was about it. I think he was waiting for me to mention it, but it definitely wasn't in the way I'd thought. He started in on a long, unfocused speech about how the bishop had written a letter and it had been published in the Summerside bulletin about how plots were being held for people who hadn't paid for them because other family members had said they wanted to be buried together and how people would have plots on PEI and then move away and get buried there and that the church was cracking down on things like that so they wouldn't run out of spaces to bury people ... I didn't hear it all, I tuned most of it out and only started paying attention again when he got around to "I told her no, I didn't want that." If you know me reasonably well you'll know I was on my best behaviour when all I did was say "Okay, that's fine, you've made your decision so we don't have anything else to talk about there. I was just telling you and I'm just warning you that you've probably got less than a month to change your mind if you want to." Then I left the house.

When I got in to the hospital Mom mentioned I'd missed the doctor and I apologized and said that I was talking to Dad and didn't make it in as early as I'd thought I would. She just said "that's okay" and then something like "it's nice that you two are getting along." Obviously I didn't correct her and it wasn't really a lie to not tell her that we'd been squabbling a bit again, but the truth is not much has changed between my dad and me. He starts to make a speech, I tune him out until I find a good route to escape then I throw up something as a distraction and bolt.

Anyway, in the past now.

There were a lot of visitors yesterday, Janet stopped by in the morning and then offered to come by again in the evening to sit with her if I wanted a break. I really feel bad about that, I feel like I should be here every second I can, but it's really difficult and I'm really grateful for her and for Gregory and Zita offering to keep her company while I step out for a bit. I still feel guilty about it, though.

Another alarm in the hospital, second one since I got back from lunch. The nurse said she thought they were running some tests but since I saw three fire trucks here at the first one with their lights on, I'm thinking it's not planned. Maybe the storm's causing some problems, though it's really not much of a storm. At least not yet.

I hung out with Brenda and Steve again that night and only got back to Dad's around 12:30am, so I slept right through my alarm. At least I think I did, I didn't hear it but maybe it didn't go off, I'm still figuring out the new phone and reading the manual seems to be beneath me for some reason. I'm usually pretty good about reading the instructions but I guess I'm just convinced I can figure out how to set the alarm on a cell phone without help. Anyway, when I did get up this morning he was already gone but he was back before I could get out of the house. I wasn't trying to avoid him but I also didn't really want to get into another fracas with him if I could avoid it, so I thought I'd sneak off and just leave him a note. Anyway, turns out he was in a reasonably good mood today and we chatted a little bit about Mom but mostly just small talk. When I left I told him I'd be at the hospital most of the day and he said he'd probably be by later.

Mom was seeming pretty tired this morning, but she said that she'd eaten half a slice of toast for breakfast, which is huge for her, so I'm thinking she was actually feeling a bit better this morning. Her and I talked for maybe half an hour and I was telling her about talking to Leonard when there he was at the door. The rain had lightened a bit but I guess Sharon's husband had given him a ride over. He stayed for close to an hour and most of the time he was nearly in tears. I knew from the conversation on Saturday night how broken up he was about the news. We talked in the hallway for a few minutes too and he just kept coming back to "are you sure there's nothing they can do? She doesn't seem that bad."

Anyway, Gregory and Zita showed up and while they were there I drove Leonard home and when I got back I wasn't there for more than fifteen minutes or so before Dad showed up. He stayed for quite a long time and we had a pretty good conversation this time. I know he's really upset about it too but sometimes ... well, you never know how he's going to react and how he's going to show how he feels, so I'm just glad everything went smooth and he didn't seem to upset Mom.

Gregory and Zita are here now, I'll add more later.

Talking With Monica - Pt. 2

Okay, so Janet is sitting with Mom for a bit (though mostly right now Mom's just sleeping and not doing much of anything else). Janet said she thought she saw Gregory sitting at Tim's on Granville, which fits the normal pattern for 10:00am on a weekday morning, so I thought I'd stop by there to chat with them and have my requisite coffee. I got there though and he wasn't there (but I saw a guy that could easily have been mistaken for my uncle from the road) so I just got my coffee and came here to Mom's place so I could post an update and maybe run into my aunt and uncle here.

They're not here right now, though, so I'll get this update up and if they haven't arrived by then I'll head back to the hospital.

I got to the hospital this morning just a little after 8:00am and by about twenty past Monica was there. Mom's instincts were right. We talked for a bit but since I'd been going into this meeting with a clear objective (just like the last one, have one or two, clearly defined objectives and stick to them) I quickly had her cornered. She kept it light as much as she could but after a couple of minutes I think she got the message that I wasn't being brushed off so she took me aside and gave me her best assessment.

It's not good. But I knew it wasn't going to be.

They're not doing IV feeding because Monica really only believes it will "prolong her dying, not her living". Her words. I guess she wanted to make sure she drove her point home. She gave me a pile of examples of times when they have done IV feeding for people around her and some of her patients -- the analytical part of my brain was wondering how real they were and how many were like the "a parishioner stopped me after mass last week..." type stories the priests give as part of their homilies, my understanding is that very rarely are those spontaneous writings of the local priest, but a selection from some suggested stories given to the priests that relate to the week's readings -- and how she would have definitely put Mom on IV feeding if she had thought it would do any good but that with her being so weak and the cancer being so aggressive, she thought it would only do harm. She said at this point yes it would keep her alive a little longer, but she thought it would be the difference of 3-4 weeks instead of the 2-3 she thinks Mom has now. Apparently Dr. Kahn's last note to Monica said the same thing.

The last thing Monica said to me before we went back to Mom's room is something I want everyone reading this to keep in mind.

Monica has not told her the estimates of time left and any time Mom asks her, she says "nobody knows", so please don't say any different.

Again, this is a diary for myself first, so I have something to look at later and remember how it all happened, so I'm putting it all down, but because I'm also sharing this with you, I do occasionally have to make requests like that.

Talking With Monica

I was determined to get in to talk with Monica this morning and Mom said that she usually takes Friday off so I should be in kind of early just in case. I had Dad wake me up around 6:30am and we went out to breakfast at the Linkletter. That was kind of a painful experience for a few reasons. First, literally it was kind of painful because my back's been bothering me again and I left my meds at Mom's last night. Second, Dad and I really have a difficult time finding things to talk about and even though I know he wants to have a relationship with me, it's tough because the things that matter to him really don't to me and he's not good at small talk. I could start talking about the state of our garden this year, just looking for anything to have a normal social interaction and he'll turn it into how much longer he has and whether he wants to keep the house and where he'd live if he sold it. I wish I could find a way to convince him that not every conversation has to be about things of grave importance. Sometimes it's nice to just shoot the shit. Third, he's still twitchy and odd, the way he has been at least since his first heart surgery (honestly, I think the shock of how close he came that first time unhinged things a little bit, he's never been the same since then). He spilled some syrup on the table and when the waitress came by to wipe it up he flinched and hit her. Not hard but enough to make her jump too. He apologized and said he thought it was a fly on his arm, but this is just the kind of stuff I've come to expect from my dad over the last twenty years. I left her a big tip.

Anyway, after I left him I stopped by Mom's place -- Gregory and Zita had obviously been there after I left last night, still working -- picked up my Robax and posted the blog entry from last night. (With my old PBeM-style formatting, I knew I was forgetting something but I was in a rush to get to the hospital. Damnit. I'll have to try to remember to fix it this time.)

Damnit, one of the orderlies here is whistling Jingle Bells. That's going to be stuck in my head for a long time.

Janet just popped in. Finish later.

Day One - Tide's Out

First: I'm writing this on Thursday night at my Dad's place but I'm posting it on Friday. When I say 'today' I mean 'Thursday'.

The flight home was fine, really nothing to speak of except that it was over before I really knew it. It never really registered with me while I was looking at the flight time that in just about an hour and a half we could fly from Ottawa to Charlottetown. That's 13+ hours of driving. If it wasn't so stupid expensive, I'd be doing it all the time.

I'm staying in PEI for the long haul, though. That's almost a certainty at this point. It's funny (as in ha ha, though I suppose also in the peculiar sense, from a certain point of view) how it worked out, though. Even this morning, one of the last things Christine said to me as I was getting out of the car was that I could either change my ticket so I didn't have to fly back on Monday and then turn around to come right back again, or I could just get a one-way ticket for next weekend. I said yeah, but that I would ask the ticket agent on my way to the gate about changing it now since I was pretty sure I should be staying anyway. Then I nearly forgot to ask the agent after I dropped off my bag. I was a good fifteen feet away from him when I remembered. Had there been anyone in line behind me I would likely have just left and planned to call Air Canada later, but there was nobody behind me and I decided I'd get this out of the way right now.

So I went back to explain my situation: I originally planned to fly back on Monday but I had a bit of a medical emergency in my family and I'd probably be needing to stay longer. Can I change my ticket? He told me yes, but there's a change fee and I could tell I was venturing into unfamiliar territory with him. He said he thought it was $75 but then he said he thought that if I called up more than 24 hours in advance of when the ticket was supposed to have me flying it would only be $50. Then he said he thought that more than 24 hours notice was half the price of the less than 24 hours notice so we don't know what costs what except that less than a day costs more but either is arrangeable. That's cool. Then he started looking at the file and asked me "when did you say you were flying back?" in that tone of voice that clearly said he was seeing something that made him question my story. I replied truthfully, Monday evening. He confirmed this for me: Monday, September 21st. I said "no, Monday. After the weekend." and that's where he said something that made me question, just for a moment, if he was a bit slow. He said "have you bought your ticket yet?", obviously already convinced the answer was 'no' and I was asking some crazy hypothetical question about changing a ticket I didn't already have.

We had a few minutes like this before I realized what was going on and I said something like "let me check my itinerary", opened my backpack where I had printed it out the night before, and saw that, yes indeed, the return ticket Christine had bought me for "Monday" was for a Monday that wouldn't occur for another four weeks in the future. I laughed, told the agent that clearly my wife had different plans for me than I thought and that I'd take it up with her now. He seemed a little confused by the whole turn of events but was happy enough to see me go.

After I passed through security I hopped on the internet and turned it into a game with her, forwarding her the itinerary that she had sent me earlier in the week with only a suggestion that there was something wrong and she should try to figure out what. Then I started goofing around on Facebook for a while, exchanging nonsense wall posts with Tracey and MarkH.

Gregory and Zita were already waiting for me when the plane arrived and on the ride back from the airport he told me everything that had been going on. He and Zita had mostly finished with the packing at Mom's place, they'd left the bed set up there in case I wanted to stay there (I did at first but now I think that would be an extremely bad idea) and they left Mom's computer out (which I expect I'll make use of to post this tomorrow). He also told me about the video link they planned to set up between Mom's hospital and either the hospital near Trisha's place or the one where she works. They'd hoped to have that today (or Trisha had hoped to have it today) but it'll probably be tomorrow. He's also managed to sell some of Mom's furniture so I don't have to worry about it and he insists on giving me the money even though both Mom and I think he should keep it since he's done so much work for us. Anyway, there's that and he also had some good suggestions for me on how we can get Mom's stuff back without needing the storage unit.

Once again I'm so glad for Gregory's help that I don't think I'll ever be able to thank him properly.

I spent most of the afternoon with Mom. We talked for a bit then some of her friends dropped by to visit, Doris Murphy first, then some other women who's names I forget -- I'll try to get them tomorrow -- and around 6:00pm I left to get something to eat. I had some cards for Steve so I called them and Brenda invited me over to dinner since they were about to put some steaks on the bar-b-que and Steve's parents, sister and her new baby were coming. I took her up on the offer and probably stayed there until about 8:00pm when I went back to the hospital and met Norma on the way out.

I had missed a call from Trisha while I was driving so I called her back when I got there and Mom and her got to talk for a bit, but by now Mom was seeming pretty tired and I only stayed for another hour and a half or so. Talking to Trisha, though, I found out she's got the same questions for Monica that I have, though being a nurse her's are better formed and more to-the-point. Mine are "what can we do" and "isn't there some way we can try giving her food through IV" while hers are more "why aren't you giving her X" where X is something I've completely forgotten. I need to write this stuff down. Anyway, tomorrow morning I'm going to be waiting for Monica when she comes in to check on Mom and I'm going to be looking for answers of some kind.

After I left the hospital I came here, to Dad's. He's still not dealing well with it, though it's in his own way. He's all about conspiracy theories and blaming Monica for not finding it sooner and how the story doesn't seem right to him because he knows people that have lived for decades after they've had cancer so why is this one so bad? He still isn't at a place where he can think about what's happening right now and how we go forward. At least I recognize it, though, and I can deal with his inability to deal. I forget the stages of grief so I don't know if he's further along than me, I think 'anger' is before 'denial' and 'bargaining', which seems to be the two I'm bouncing between these days, I think I skipped right over 'anger' but who knows, maybe I'm just taking a different path.

Anyway, that's about all I've got for right now. There's more, but I'm exhausted and I'm going to have a lot more to write up tomorrow anyway, so I'll wrap it here.

Oh, yeah, the title. Tide's out. As I was walking across the utterly silent, mostly empty parking lot of the hospital on my way to the car tonight I could smell the harbour. Tide's out, I thought, looking up at the sky and breathing in the smell I disliked so much as a kid, the one Mom always used to say made her just sick. It's the one I'm now associating with long summer nights spent at the Lobster Carnival with my best friend, Yancy, visiting my Aunt Stella who passed earlier this year, and playing with my cousins from Ontario when they would come to the Island on summer vacations. Love that smell.

Possibly the last update for a bit

A lot has happened in the last two days but I don't have a lot of time right now. I'm on my way to the airport and then I'll probably be staying with my father for at least a bit. With Dad not having internet, that probably means I'll be scrounging around for wifi access, or finding a way to stay with Steve and Brenda.

Anyway, if you see me on facebook or something, you'll know I found some kind of modern technology back home.

Even Smaller Update, Better News

I wasn't talking to Gregory tonight, but I did give Trisha a call to make sure she knew what was going on. She wasn't home, but I was talking to her husband Jim for a few minutes. He said that someone (I'm guessing it was Gregory but it might've been Mom) called Trisha yesterday and filled her in on the details of what was happening. That's good. What's better is he said they were looking into what they could do to come visit in the very near term. They don't have passports and getting one is a 4-6 week process (basically the same as getting one in Canada) but he said that they'd found out that they could get a temporary paper if they drove across the border which they could use to re-enter the U.S. on their way back. So if that's the case then they just need to figure out how to get the time off, what to do with the kids and spend two days driving to the Island. He didn't say any more than that, but I was left with the impression that they were considering options that might get them there at the same time I'm going to be there.

Okay, so it's not great news, but for Mom to have both her kids there at the same time, I know that'd do her a world of good.

Small Update: "Good" News

I was talking to Uncle Gregory again and he had better news this time.

I guess what had happened this morning was Mom got up okay, went to the shower, came back to her room and tried to tell Janet something. She seemed confused but was definitely incoherent and Janet called the hospital right away. They hooked Mom up to the IV feeding drip and in the first hour she drained the first bag so they brought in a second one. Her blood sugar was extremely elevated, her salts were very low and she had been extremely dehydrated. By this evening when Gregory left he said she'd been doing much better, she'd even felt like eating a few spoonfuls of soup, which, for her, is a good sign.

They're going to keep her in until Tuesday, when she's meeting with Dr. Kahn again, and then they expect they'll discharge her. She's still going for the biopsy on Thursday but the new plan is I'm going to be there too. Christine found me another ticket that'll get me to the Island on Thursday afternoon and then I'll be leaving again on Monday evening. She'd asked if I even wanted to bother with a plane ticket back or if I was going to take my sabbatical now, but I said I didn't think it was time yet. I sure hope it's not time yet.

Anyway, Gregory promised to call me if anything changed or if he had any updates. I'll call him tomorrow night with my travel plans so he knows what's going on. I'll be putting anything I find out up here as soon as I figure I can write about it and have it make sense.

Events Best Forgotten

I just got off the phone with Mom's brother, Gregory. He's always seemed to be "Old Farmer Stock" to me. Always quiet and reserved, seeming a little bit distant until you get to know him. Once you do get to know him, though, you realize how wrong that last part is. He simply was raised at a time when men didn't hold their emotions out for everyone to see. He's James Dean, Steve McQueen and John Wayne on the outside but he's probably kindest, most generous person I've ever met and he goes well beyond the call of duty for his family.

A few weeks ago, I was back home for Mom's consultation with Dr. Rendon, he was the one who drove Mom and her friend Janet over to Halifax and drove us all back to the Island. What's special about that is that was Friday. He drove them over (a little over three hours each way) and then actually went into the doctor's office with Mom (he didn't need to, Janet, his wife Zita and I were there too) to hear what Dr. Rendon had to say. This isn't just noteworthy, this is practically monumental for him because he's incapable of going into hospitals or doctor's offices or even talking about such things. Maybe I'll eventually go into the events around his brother Paul's death someday, but not today. The point is, neither mom nor Zita expected him to come into the office, but he did.

Okay, so then he drove all of us back to the Island Friday night. We had offered to have him drive mom over (he really wanted to) and Janet would take mom's car over and then the three of us would drive back to the Island Friday night because, and this is key, Gregory and Zita's son is living in Halifax now and his birthday was on Tuesday so they were spending the weekend with him to celebrate.

That's right, he drove more than six hours on Friday when he didn't have to and then first thing Saturday morning he got up and he and Zita drove another three back to Halifax so they could spend the weekend with my cousin. Then they drove back on Sunday night because he wanted to make sure I had a ride to the airport on Monday morning. I told him that he didn't have to, that I could find another ride but he really wanted to do it for me. That's just the way he is, if he can help at all, he will. But he never lets his emotions show, they never get away on him. Or I've never seen them get away on him.

Today he's in danger of losing his hold.

I was sitting here, feeling the itch to work on some code and as I was cleaning up the office yesterday I found a webcam that I'd bought a couple of years ago and never quite got working in Linux. I thought, what the hell, it's clearly not supported now, it'll be a small project and it'll give me something fun to tinker with for a few hours. So I've been scratching out a bit of code to get it working, learning more than I'd planned to about CCDs and how the human eye is more sensitive to green than red or blue, common encoding formats, and was about to start testing when the phone rang. Gregory's name came up on the display and I knew it wasn't going to be good.

This morning Mom woke up and was (to a greater or lesser degree, I'm not sure) incoherent and apparently confused. Janet managed to get her to the hospital where they're putting her on intravenous feeding (probably more than just food, but Gregory didn't have any more details than that) and they're undecided about whether they were going to keep her tonight or not.

He didn't have any more details than that, except the stuff I'd already known from the last time I was talking to her (Thursday night? Friday night? I don't think it was Friday I called her, but the calls kind of blur together now). That Tuesday she has her next appointment to discuss her brain scan results with Dr. Kahn and on Thursday they have her scheduled for the biopsy of the tumor on her kidney. Not Dr. Kahn's preferred ordering of things to happen, but this is the way things happen. I suspect the plan to go with chemo or not has already been made from his point of view anyway and the biopsy is just going to confirm what he already knows.

Circling back to the title and the earlier background on Gregory (finally!) he danced around the subject a couple of times before he found an angle he liked, but he eventually asked me if I could come home next weekend. Actually, he said he thought it would be good if I could make it home next weekend. That's when his voice broke and I started to feel ill. He's been in the hospital all day with Mom and he was just calling me while they were taking a couple of hours off to get something to eat, find my cousin (he came home to be with Mom too) and then they were going back to the hospital.

He's going to call me back later on tonight and tell me what's new, if anything, and whether they're keeping her overnight or not. In the meantime I'm going to do my best to not speculate about anything. It could be the cancer finally taking hold in her brain. It could be her blood sugar levels which we've known have been extremely high for a long time now. It could simply be a general lack of nutrition. I don't know if it tells me anything or not, but Gregory said they weren't going to do another transfusion, but I don't know if that rules out any of the possibilities I've considered or not.

Wait and see, I guess, and start checking out travel options again.

Not Palliative Care Yet

There's news. I'm choosing to interpret it as good, though I suppose it's more of a holding pattern right now.

I'll spend more time filling out the details later, but the short version is that when I called Mom today she sounded a lot better than yesterday. Probably that had something to do with the fact that this time I didn't wake her up when I called. I knew I needed to temper my reaction last night, which is why I tried (and probably failed, but that's me) to stick to the facts without interjecting too much of my own views.

It turns out she's not being put in palliative care yet. She's getting her name on a list that's apparently the one used for getting into palliative care but, as I kind of mentioned last night, she's not going to be going anywhere. She'll be staying with her friend Janet, but once a week they'll have a nurse in to see her and check on her status. That's good. That's probably really good, actually.

The other good news is the drugs she got from Dr. Kahn. It's actually two prescriptions, not one, but one seems to be purely an anti-nausea thing while the other has a desirable side-effect: increased appetite. The first is something called apo-metoclop (which Christine found in one of her magical chemical databases as metoclopramide. She tells me this is a synonym in the same way 'process', 'program' and 'application' are synonyms, there's differences between them but at the level we care about, they're equivalent). The second is dexamethasone which is a steroid as well but has different characteristics than prednisone, which I already thought was doing some (minimal, admittedly, but I'll take what I can get) good.

The important thing, though, is she was in good spirits tonight. She ate a bit of casserole at dinner and she was generally pretty positive. We talked for almost an hour, the longest she's seemed to want to talk in quite a while, and she seemed mostly decided that she was going to go ahead with chemo at this point. She'd already come to the conclusion that she could reasonably easily just stop it at any time if she wants (obviously we don't want that, but the fact remains that she can make her own decisions and she has the right to say "that's enough") so it seems low-risk to her to try it. One less thing for me to worry about, I guess. I really, really want her to at least try it and then see and if she's already decided that on her own, awesome.

Actually, in that same vein (no ... well, if I didn't want to be a bit punny, could just take that out, so I guess I intended a bit of gallows-humour there) I really owe Christine for jumping in with the necessary dose of reality. Mom had been talking about trying chemo "for a couple of weeks" but Christine pointed out that the first few sessions are always worse than the later ones while they try to strike at the cancer first and while the sort out the necessary dosages. So hopefully Mom'll remember that when she starts it, that it's going to get better after the first few sessions. The good chemo news is that, as we'd already mentioned in a couple of discussions, it's not delivered via IV, it's a pill form. Hopefully that'll be less hard on her.

Okay, more detail later, I'll probably just update this post (or maybe follow up with a pt.2) but I'm going to sneak off and do a bit of work-work for now. There's kind of an interesting problem that I think I can fix in a short time that will end up benefiting a few groups if I can get it wrapped up tonight.

Palliative Care

I'm going to put this down just as quickly as I can and not worry about things like structure, direction, spelling or even making sense. I need to get the raw data down now while it's still fresh and then I'll visit it again, probably tomorrow, when I've got something to dress up the data and turn it into information.

I got off the phone with Mom a few minutes ago and I'm still in shock. I know I'm in shock because I feel exactly the same way I did right after I did around 1:15pm on Saturday, July 18th. That is, I'm not really feeling anything, I feel like the volume's been turned down on everything around me and I'm probably just dreaming it all. That'll pass but on that Saturday it didn't until about 10:00pm that night when Christine and I got a chance to talk alone in the kitchen as we were going to bed. So ... yeah, it'll take a little while.

Mom met with Dr. Kahn today and she said there was no good news. My mom tends to interpret things in a more negative light than ... well, than they're intended. I nearly said "than I would" but we know that's not true. If anything I've taken her mild pessimism and raised it to a level that could almost be called doctrine. Anyway, normally she would say there's no good news and then I'd be able to tease rather a lot of reasonably good news out of her. Today isn't one of those days.

Dr. Kahn pointed out what I've known all along and what I'm sure Dr. Rendon felt too but wasn't willing to make a final call on in Halifax. Mom's too weak to go through surgery. He took it a step further, though, and said that even with chemo he didn't think there was any chance they would or should do surgery, that it would unnecessarily add to her suffering.

I'm really going to hate words like that soon, I know.

Okay, so what did he say? He said he wanted a brain scan first. I think that's what Trisha asked about when I was back on the Island at the end of July.

Damnit, I never even started talking about that yet, the conversation we had with her and I forgot to ask Mom if she'd called Trisha yet. Probably not. I've got to do that.

Right, back to the point. I think that's what Trisha had been asking about, though she was talking about a PET scan and all Mom had done were a number of CAT scans. From the reading I've done on the differences, I suspect the brain scan they're going to send Mom in for will be another CAT scan because I think they're just looking for static information, is there a tumor somewhere in her head? and not whether something is constricting blood flow throughout the brain or whatever. But maybe I haven't a clue what I'm talking about there. Scratch that, no maybe.

Anyway, that's the purpose of the brain scan, to see if the cancer has spread there too. That's going to be scheduled sometime this week but we don't know when yet. After that she's going back to me with Dr. Kahn and then she'll have to make a decision about going into chemo or not.

Let me be perfectly clear on this point, too. She's considering refusing treatment entirely. In fact, if I were a betting man, I'd bet that right now she's going to refuse it. I don't know how I convince her to at least try the chemo -- or if I even should or if I'm only wanting to convince her she should for my own selfish reasons -- but I've got a very short time to come up with something.

After that? After that nothing. We do chemo or we don't. Surgery is off the table. Let us not speak falsely now, it's probably off the table for good.

He also took her off the prednisone, he said it wasn't doing her any good (to hell with that, let's hear a great big hell yeah for psychosomatic effects because it sure as shit appeared to be helping her when she ate most of that baked potato and a handful of my fries at Wendy's that night) and put her on something else today. She couldn't remember the name of it but they're getting the prescription filled out tomorrow morning so I'm going to call back tomorrow night and try to get more details then.

The title? Yeah, they're putting her on the palliative care list right now. I don't quite know what that means either and honestly I'm a little afraid to ask because palliative care sounds a lot like end of the line to me. I know it shouldn't but every other time I've heard that phrase it's usually soon followed by an announcement in the papers. But it's also apparently not what I expected, so (hopefully) I'll have to reevaluate what I thought I knew about it. They're putting both Mom and Janet on it so Janet can get some help with looking after her. I think this means she's going to be staying at Janet's place for the time being but Mom also said something about how being on the list might mean she can get into a ground-floor, assisted-living type place, which really doesn't sound too bad to me. I think maybe she's confusing some of the details, though, because she had been asleep when I called (just another little barb there, 9:00pm is not a time when my mother was ever in bed, she never turned in before 11:00pm, usually around 11:30pm) and I know she's having a hard time concentrating on stuff now. I hope it's stress, I know I'm not particularly sharp when I'm running on fumes and stressed all to hell, but that scan on her head ... I'm not surprised they're asking for it, I've been wanting to ask for something like that since mid-July and I think my sister has too. I think this isn't going to fall into the category of 'unnecessary tests'.

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.

Possibly Repeating Myself

Already I'm getting the feeling like I'm rehashing some details. That's partially why there were no updates on Monday or Tuesday this week. Well, Tuesday. On Monday there were no updates because I flew back from the Island and by the time I got home I was absolutely wiped out. I slept for a bit in the afternoon, woke up then was back in bed before 10:00pm and slept until about 6:30 the next morning.

Now Sunday. Sunday there were no updates because stuff was happening.

Actually, stuff was happening on Saturday too, but I shared some of that already, which brings me back to the first point, I may be repeating myself. If I am, sorry, but I promise to do my best to bring something new to the table.

Okay, so on Friday we were in Halifax and met with Dr. Rendon who, among other things, gave Mom a large-ish prescription for some variant of Prednisone (I saw the exact name on the bottle the pharmacist gave us but I've lost it, not having a particularly good eye or memory for drug or chemical names) in response to my continued concerns for her utter lack of an appetite.

Perhaps I should take a step back and really put that into perspective for anyone who hadn't been around Mom in the last few months. I honestly wouldn't have believed it if I hadn't seen it regularly with my own eyes. Most days since June her entire food consumption might consist of as much as half a slice of toast with (I'm guessing) half a teaspoon of peanut butter on it. Maybe as many as three cups of tea (black, nothing at all in it) and, if we're lucky, maybe half an orange or a pear. That's it. She was literally starving to death (still is, I guess) but if she tried to force herself to eat more than that she would throw it all up within a few minutes and we'd be at a net loss because then she couldn't eat anything.

I really don't think the doctors we talked to were quite getting that for a couple of reasons. First, Mom had been overweight by rather a lot for as long as I can remember. I know it wasn't her whole life, there's lots of photos of her when she was younger where she wasn't overweight, but I never remember a time when she didn't need to loose a bit of weight. So the first thing was that she had a lot of weight to loose. That doesn't really stand up to scrutiny, though, because all you had to do was look at her and you could see how weak and frail she had become and the skin just hanging off her bones could tell anyone looking that something was seriously wrong. That brings us to the second reason why I don't think the doctors were quite getting it, and it's a matter of personal shame for me. She's been not entirely honest with Monica all of the time and some of these not-quite-truths have spread to other doctors as well, I'm sure. The reason why it's a matter of personal shame for me was that I caught her in one of these discrepancies after we met Monica and while I held my tongue when she was in the room, I did bring it up again after it was just Mom, Christine and I. I didn't yell or flip out or anything, but my firm (and apparently not gentle enough) statements that she cannot lie to her doctors no matter what did make her cry. Let me tell you, I still feel ill over making my sick mother cry and that's going on three weeks ago now and I still believe I was doing the right thing. Doesn't make it any easier to face, though.

So, anyway, Saturday we got up, dropped off the prescription and went off to talk to my cousin (I hope to get back to that in a later post, too, but who knows if I will, it's worth talking about but I can't promise anything) while it was getting filled. When we got back the pharmacist read Mom and I all of the instructions and warnings and then did what I guess all pharmacists should do, she took a look at Mom, looked at the size and dosage of the prescription and asked what it was for. Mom told her it was because she wasn't eating (and I confess here that at this point I actually had to fight down an irrational instinct to hide this fact for reasons I can't explain) and the doctor was prescribing it for the purposes of stimulating her appetite. The pharmacist laughed and said that it should definitely do that for her but then made a suggestion that I could have kissed her for. She told Mom that she should also try drinking Boost meal replacement drinks. No surprise to me, Mom told her she couldn't drink them but the pharmacist persisted (I owe her a second kiss for that, I think) and said that while she was pregnant she lived for fifteen weeks on nothing but Boost drinks and that there were lots of varieties to try. Eventually the pharmacist convinced Mom to just try at least one of the juice boxes since she wasn't as set against them as the milk-based ones and we took the single box home with us.

I so wish I'd noticed the pharmacist's name, I want to send her a thank you note. Next time I'm on the Island I'm seriously going to make an effort to just drop by the pharmacy and see if she's there.

Anyway, we went home and Mom took the first of her Prednisone and I convinced her to try to drink some of the box while I ate my grease-burger take-out. I poured her box into a glass and went off to the kitchen to hunt for ketchup and when I came back she said "You know? I think I can drink that." I nearly cried right there it was such an incredible relief. I can't even explain it except that I had been slowly coming to the conclusion that I was going to watch my mother starve to death with a fridge full of food before the cancer could even get to her but then we found this thing which, while obviously not ideal, would probably keep that from happening until the steroids could maybe work their magic and bring her appetite back.

Okay, that was Saturday. Sunday was bad at first but it ended on such a high note that it's nearly washed all of the other details out. We got up and Mom was feeling kind of depressed again but she ate half of one of her home-made rolls for breakfast and drank some tea (plus the cocktail of pills, now with more corticosteroids!), which I'd come to accept as just a normal morning now. After breakfast we started in on cleaning out more of her old papers and photos and such, the plan was to focus entirely on clearing out as many of her plastic as possible before I left so she wouldn't have to do them alone or move them. When lunch rolled around she drank the other half of the Boost box I had poured for her on Saturday while I raided her freezer and then we decided to take a break and go out for a bit.

Well, actually, that's where things went kind of bad. "Went out" is sort of a euphemism for "went on a morbid goddamned scouting mission". She had asked if I knew where my uncle Paul was buried and I said no, I didn't know what part of the graveyard he was in and she said she'd like to go visit him and she'd show me. So we went because no way am I going to say no to her now. It was a beautiful day, weather-wise, (Hey! Look! Nice Day!) so I parked the car somewhere near and then walked over to where Paul and Mom's parents are buried. We talked for a bit and then she said she'd like to go visit her friend Rena as well, who is up in the new part of the graveyard. So we went back to the car and drove around to the other side of the graveyard and got out to go looking for Rena's tombstone.

It took us kind of a long time to find it and while we were she started talking about what kind she liked and what she thought about this or that one and the whole time it was getting worse and worse for me.

Let me skip back about twenty-five years or so here for a moment. I'd been thinking about Mr. Greenan all day and about one incident in particular that happened on a cold fall evening at his house. He was one of my catechism teachers and one evening our little group was discussing the role of the church as a family. I don't remember the direction his lesson took but I do remember he asked us to imagine what might happen if we didn't have our parents around anymore, who would take care of us. It wasn't intended to be frightening or upsetting and for the other three kids in the class it wasn't, but this idea completely destroyed my sense of reason. I broke down pretty dramatically and while I was recovering I remember one of my best friends from back then sounding pretty worried and asking Mr. Greenan what happened. He explained to her that since I didn't have any brothers and sisters, I probably felt like I'd be completely alone and it scared me. Maybe that was it, I wasn't much into analyzing my motivations back in those days, but whatever it was, that mental image I managed to summon up when I was ten-ish, the one of saying goodbye to my parents forever, was with me all day long.

Eventually we found Rena's grave and after a few minutes started back toward the car. That's when Mom told me she didn't think she'd be able to make it without resting and instead she asked if I'd mind if she just made it to the edge of a row and waited for me there while I went to get her.

I tell you, that was it. I utterly lost my shit at that point. I think I'd been holding it together pretty well until then but that was the point where I really got the message that my mom is dying and there's nothing I can do about it except stand by and watch. My throat closed up and I couldn't say anything so I nodded, and helped her walk to the end of the row then just stood there, hugged her and cried for a good five minutes. Not wailing and sobbing and anything like that, just quiet but I couldn't hide it from her, despite being most of a foot taller than her. After a while she said something like she was sorry it was ending like this and I said it wasn't ending like this, it was just a rough patch that we'd get through, but you know how it goes.

Anyway, I needed some time after that to get my house back in order so I suggested we swing by the Timmy's so I could get a coffee since I'd only had one the day before and if you know me, you know me having one coffee a day is recipe for me ending up beating some hapless bystander with an old boot at some point the next day. The Timmy's shares space with a Wendy's and while we were sitting there Mom was looking longingly up at the Wendy's menu and said something about how she used to love their baked potatoes with broccoli and cheese but now just the thought of trying to eat one turned her stomach.

We moved on after I finished my coffee and she finished her tea.

We went back home and wrapped up our work on the last of her plastic storage bins and then zipped through all of her old video and cassette tapes. Most of them were trash, some she decided to donate to charity and a few she's keeping that I'll want to get transferred to some digital format eventually. Then, completely out of the blue she said to me "whenever you're getting hungry again, I think I'd like a baked potato from Wendy's." Not even her simple statement the day before that she thought she could drink the Boost juice made me feel as good as I felt right then. She didn't just eat something because I was eating and I wanted her to eat, she really, honestly wanted some food.

So we went to Wendy's. She didn't enjoy it as much as she'd hoped, it didn't taste as good as she'd remembered but she said it was good and she ate more than 2/3 of the potato which nearly made me giddy with relief. Calorie juice is good but solid food? That's the holy grail right now as far as I'm concerned.

So she's eating again. Very little, but way more than she has for months. When I flew back on Monday morning she didn't get up to see me off (seriously, who would crawl out of bed at 4:00am if they didn't have to? that's just crazy) but I called her when I got back and it turns out she'd had another roll for breakfast and she'd drank another whole box of Boost at lunch and then had half a pear and some ice cream for dinner. And today when I called her and asked her how she was doing she started off with "oh, alright, not great" but then she told me that mostly it's because her hip hurts but that she's actually going out looking for food at meal times now, showing interest in what her friend Janet is having and she's even starting to snack a little bit. I'm sure she's still way under what a woman her age and activity level should have for a caloric intake for the day, but it's movement in the right direction and I'll take every little bit of hope I can find right now.

It's all a matter of perspective

This will have to be very quick because Steve is coming over soon to help me move one of mom's chairs, but I was on Facebook earlier and Christine told me I really should update the blog -- a suggestion with which I completely agree -- before too much longer.

The problem is all of the stuff I need to update everyone on. I guess I'll try to hit the highlights (and yes, there were highlights) from Friday.

First of all, I made it to Halifax without incident and once I got there I managed to find Brad without (much) trouble. I heard him wrong and told the cabbie the wrong turn off, but mercifully for me it was just one exit early off the Bedford highway and it really didn't add any time to the trip. We talked about a lot of stuff that I may get back to later, but for now I'll skip ahead to when I left the office and went to meet mom at Dr. Rendon's office.

Mom, her brother Greg, his wife Zita and mom's friend Janet were all there by the time I arrived and we got in pretty much right away. I think I sat for maybe two minutes there before they were calling us in, which is kind of what I expected since I arrived pretty much exactly at the minute her appointment was scheduled. He was obviously tied up with other stuff, though, because we sat there for nearly fourty minutes in his office before he got in to see us.

Nice guy, didn't rush us at all. Scary young, though. He gave me the impression of knowing his stuff and we know another renal specialist who was taught by him, so I'm comfortable that he's not as young as he looks, but he's got a total baby-face. I wouldn't be surprised if he still gets second looks when he goes into a bar and orders a beer. The poor guy was also dying from a cold, so he didn't shake hands or anything and used his hand sanitizer probably a half-dozen times while we were talking to him.

Okay, off to the facts of the appointment.

He briefly examined mom and asked for a fair bit of her personal history then reviewed the reports he had in front of him. One report was missing, the bone scan, I think, and he sent out for it too but he looked at the raw data while he was waiting.

He didn't have any real revelations for us about the cancer. He's very confident that the kidney is the primary site. Yes it has spread to her lymph nodes along the aorta and there are tumors on both lungs. He didn't think it was anywhere else, though, and he didn't think that there were problems with her other kidney (more on that later, if I forget, someone remind me, please). He said he had no idea how long she'd had it but he was very confident she didn't have it in 2006 when she was in to see the doctor in Charlottetown, (Reed, I think?) so it's probably less than three years old but he didn't know if it was three years less a day or six months or what.

Janet asked a few specific questions about what he thought, she'd done her homework, and he gave us pretty much the answers we expected (see above). He'd also said that since mom had an appointment with Dr. Kahn (that's the spelling I heard him use, so I think that's probably it, I probably got it wrong before) on August 11th, he wanted to have a talk with Dr. Kahn after that to discuss the appropriate ordering of treatment. That is, do they start with surgery, then do chemo or do they do chemo first, then surgery, then most likely more chemo. Dr. Rendon was saying that right now he felt that chemo then surgery was the right approach, but he also ordered a biopsy of the tumor on her kidney right away so we'll see if that changes the plan at all.

I had three questions after that. The first was a softball: Monica told us she thought the tumor on the kidney might also be attached to the bowel. He said that it was possible but looking at the data he had he didn't think it was likely. That would vastly simplify any surgery that is required.

My two real questions were the analytical part of my mind taking over. If he's proposing chemo-surgery-chemo as the strategy, what makes us decide to do that first transition. Obviously if chemo isn't being effective, we don't want to do surgery since it's not likely to improve Mom's quality of life. If chemo is being effective, though, we'd have to take her off it before we do surgery, so that's not a good idea either. I only got partway through my question before he realized where I was going with it and he gave me pretty much the only answer I would've accepted at this point.

The chemo they're likely going to use has only been on the market for 2-3 years at this point so they don't have set procedures for using it yet. He said I was posing a really hard question and that they really would need to just play it by ear and see how well she responds. The goal is to reduce the size of the tumor on her kidney before surgery but if it's going to go away he doesn't want to cut at all. So points for Dr. Rendon, I liked his answer, even though he didn't have anything to say that really made me feel good.

Anyway, the second one was about her appetite. If you didn't spend a few whole days with her you cannot believe how little the woman is eating right now. Tea, half a slice of toast and maybe half an orange has become a "not bad" day for her eating. So I really want to see her get more food into her. He gave her a prescription for some steroids (type later) which we filled today, which I guess has had some pretty awesome results with other cancer patients.

Mom asked the big question, of course: how long. He put as many qualifiers in there as he thought he could (again, no surprise) but he felt that we might be looking at two years for her now. It's funny, because three weeks ago if I'd been told that there was a chance my mom might live as much as another two years I'd've been destroyed. But that was three weeks ago. Now I'm told we might have two more years with her and ... well, I can't say I'm relieved but I can say that I was in better spirits on the ride home from Halifax than I've been in for a very long time.

Okay, gotta run, more later.