May 6
Well, this is unimaginable, so I'm going to track what happens from here. The background: It probably started last October when Rudy said that she had strained her back while we were cleaning up Kennedy and Zach's yard to get their house ready for sale. She mentioned now and again that her back was "tweaky" over the next couple of months, but it was definitely not until after Christmas that she really started to complain that her back was truly paining her. Looking back through texts, Rudy started taking rest days from the gym in late February, and so far as I remember, she hasn't been to the gym at all since early March.
Throughout this time, Rudy tried to manage the pain with massage therapy and chiropractors, along with her naturopath and osteopath and eventually an acupuncturist. (Side note: A few years ago now, Rudy started having weird knee pain and numb feet that her family doctor had no solution for, so she started seeing first the osteopath and then the naturopath, and according to Rudy, she found some relief from their treatments. Rudy knows I'm skeptical about alternative medicine, but even if it's a placebo effect, I always tried to remain encouraging [because believing in a placebo is what makes it work, right?] Once, when she was talking about how brilliant the naturopath is, I may have let my mask of neutrality slip a bit because Rudy said, "You know, she is a doctor." And I replied, "Of naturopathy." And Rudy said, "But she went to school for it." And I said, "Naturopathy school." And, frustrated — not least of all because Rudy's best friend is a chiropractor and she knows I lost respect for this friend when she tried to convince me not to vaccinate newborn Mal — Rudy said, "Well that's like saying a chiropractor isn't a real doctor." To which I replied, "They call themselves doctors, but they don't go to med school." And that was kind of left there.) But the degree to which Rudy got temporary relief from massage and chiropractic treatment made those seem like viable options; I have no pushback against anything that gives pain relief to someone who's suffering.
I knew that the back pain was serious when Rudy (who rarely took even suggested medications) confessed that she needed to take a tylenol and an advil every four hours in order to just get through her day. Rudy did eventually go to her doctor in early April and he ordered an ultrasound and advised her to stop taking the advil if she was feeling nauseous all the time (but Rudy did not stop taking it; these pills were the only relief she was getting). Perhaps because she had mentioned that she had had gallstones many years ago (we had attacks at more or less the same time in our early thirties; I opted to have my gall bladder removed, while Rudy toughed out the attacks and felt changing her diet [and acupuncture] made the stones go away), but perhaps mentioning this history made her doctor see gall bladder trouble on the ultrasound, because he referred Rudy to a surgeon and they set a surgery date for the end of May to have it taken out. (Another note on that: The surgeon had apparently offered Rudy a more or less immediate surgery date, but as a self-employed massage therapist, Rudy wanted extra time to clear her schedule and amass some cash for the needed recovery time; a decision Rudy would come to regret as the pain intensified.)
I saw Rudy and Dan last Saturday — we went out for dinner and moved a new hydraulic-lift massage table into her remote office — and she seemed like herself; a little subdued, and I was there to help with any lifting that was beyond her, but there was nothing startling about Rudy's behaviour or appearance. So, when Dan called me on Monday and said that they were at the hospital because Rudy had been having a bad day — and he was calling just to see if I'd go get their dog so they wouldn't have to worry about him — I was simply relieved that Rudy was getting into the system; happy to hear that they were giving her hydromorphone and the pain was finally being managed properly. According to Dan, they were waiting for Rudy to be admitted and that surgery would happen this week. We texted back and forth a few times yesterday, and once Rudy was in a room, we made a plan that Dave and I would come visit after dinner.
We got to the room and I was amazed that Rudy had this lovely single in the new wing, and I pointed out that when I had my thyroid removed, I was on a ward with a bunch of old people who kept calling for help to the washroom all night long with their newly replaced knees and hips (babbling like a fool because what did I know at this point?) Looking around, impressed but confused, I said, "So why have they admitted you in Cambridge already when Dan says you're having surgery in Guelph on Friday?" And Rudy said, "Because it's cancer."
Dave and I sat down on either side of Rudy on the hospital bed, each of us grasping for one of her hands, and she said, "There's a mass on my liver and on my bile duct. And on my pancreas." And, of course, that's something you never want to hear. Dan explained that the surgeon in Cambridge wasn't hopeful for intervention but that there's a surgeon in Guelph who is willing to put in a stent (unclear what it will do, but hopefully it means some kind of relief). Dave went to hug his sister and she just clung to him, crying, and said, "I'm so sorry. This is just so stupid. I'm so sorry that Kennedy and Mal have to go through this again right after their uncle Ken." And we hushed that kind of talk.
It is just so unfair, one after the other, and no comparison between their situations. Ken was a man of immense appetites and was a hard smoker, hard drinker, poor nutrition despite big meals, no interest in the outdoors or exercise. When he got his cancer diagnosis — throat and lung and diaphragm — it wasn't totally unimaginable, and Ken did not feel screwed by the universe because of it; he could accept that this was the consequence of his choices, and in a way, he found a correctness and inevitability to what was to come (and then had two and a half years to plan and accept his upcoming death). Rudy, on the other hand, never smoked, rarely drank (and when she did, never more than one), watched what she ate (including denying herself the pleasure of regular meals through intermittent fasting for the past several years), and she worked out hard at the gym, walked her dog(s) at least twice a day, in all weather. She has spent her entire adult life taking care of herself, not to mention others, utterly without vice, and has been hit with what threatens to be a fast and unjust ending. This is simply unfathomable.
Rudy also said she was sorry for not having her gall bladder checked sooner, but I have no idea if that would have done any good. It was only a month ago that an ultrasound convinced both her family doctor and a surgeon that the gall bladder was the source of the back pain and that its removal would fix Rudy right up. An ultrasound this week, however, showed these "masses" that indicate pancreatic cancer: how were they missed? Could this have been caught sooner? I feel a little annoyed that so many alternative health providers took Rudy's money without ever saying, "You might want to go to emerge and insist on a CT scan if this doesn't get better," and on the other hand, her family doctor just told her to stop the advil and handed her off to a surgeon. I do know that, one way or the other, Rudy has nothing to apologise for: she did everything right and she has been let down (by fate or the universe or our fallible human systems, it doesn't matter which when the result is the same). *Rudy told me the next day that when you have an ultrasound at one of the private imaging centres, as she did, the images are read on site and only a report is forwarded to the referring doctor. Either this radiologist missed something or something changed in the course of a month, but, to be fair, it appears that neither the family doctor or the surgeon ever saw more than this person's report.
As we left her hospital room a couple hours later, Dave burst into tears in the hallway and said, "I'm freaking out here." And of course he is: no one expects their younger sibling to go first; with his parents gone, that will leave only him as the last of his family; and that is just such a lonely and unfair proposition. We then called Kennedy and Mal — both totally blindsided, losing their only blood auntie is just unthinkable at this point — and that's where we are today.
May 8
Dave came home from work soon after lunch yesterday and we made our way to the hospital together. Rudy had been taken down to surgery around 10 am — the surgeon was going to do an internal ultrasound via scope down Rudy's throat and take a sample for biopsy — and while Dan was alone in her room when we arrived, Rudy was soon rolled in. Once she was comfortably transferred to her bed, we asked when she expected the results of the ultrasound, and she burst into tears and said that there wouldn't be any results: she was so full of cancer that the scope couldn't pass through her duodenum. Not only would there be no scope, but the surgery for the next day — the insertion of the stent to get the bile redirected and flowing again — was also cancelled. According to Rudy, she came out of the twilight anaesthesia to the surgeon patting her leg, saying, "I'm just so sorry. This isn't the result you were looking for, but there's nothing we can do." On her flank, there was a nurse patting Rudy's arm, saying, "I'm so, so sorry."
There were plenty of tears, and when Dan's sister and brother-in-law showed up for a cheery visit, he took them into the hall and Dave and I started going over practicalities, "We know you have your cremation set up, but do you want a viewing first? A reception? Are they sending you home, will you need a hospital bed? Is there anyone you want us to contact with the news?" We assured Rudy that all of her final wishes would be respected and that we would take care of Dan as best we could; he would always be family. Brenda and Mike came in and we took a walk down the hallway with Dan, breaking down in a tearful hug together and cursing a universe that would take the best of us first.
After Brenda and Mike left, the surgeon who had been scheduled to take out Rudy's gall bladder at the end of the month came in, and what a straightforward, plain talker she is. "I saw the new ultrasound from yesterday and all I can say is what the hell?" She said that she had already sent off a fact-finding message to the imaging lab that had done the earlier ultrasound — explaining that nothing can change Rudy's situation but that there has to be some kind of quality control on potentially having missed something this big — and the longer she stayed and talked, the better everyone felt. Dan stepped out to talk to one of his sons on the phone and the surgeon said, "Your husband is angry, and I get that, but the pancreas is so hard to get a read on; it hides behind the other organs and that's why cancer can be advanced — even when there's risk and we're specifically looking at it — before it's discovered. I do think something was missed on that first ultrasound, but I don't think that finding any of this six weeks ago would have changed your situation." And I guess that made people feel a little better.
Dan's son, Ryan, came by next, and being such a big-hearted, emotional person, this news was obviously a strain on him. Rudy eventually got up to use the washroom and Ryan burst into tears, came over to where Dave and I were, and gave us the biggest bear hug, "I'm just so sorry. I can't believe this." We told him that no, it wasn't fair, but that we would all get through this together.
Interestingly, after Rudy was back in her bed again, the attending surgeon came by for a check-in (a senior doctor Rudy and Dan had met the first day; not the one who had attempted the ultrasound). I don't know where he would have heard this, but he said, "Did someone tell you that we're using the word 'palliative' in your case?" And Rudy kind of fumbled through with, "I guess I just assumed..." (But I don't remember any of us using that word, despite talking about getting a hospital bed for home and Rudy saying she would prefer to spend her final days in hospice; we seemed alone as we talked practicalities.) The surgeon explained that the biopsy hadn't even been examined yet, that it wouldn't be until sometime next week, and once the cell type is determined, then Rudy would be referred on to oncology to come up with a treatment plan. According to him, yes, the "disease is advanced", but we haven't even explored treatment yet.
And that felt much better. There is a plan for surgery next week to insert some sort of drain — most of Rudy's pain is from the pressure of bile building up in her guts; she is turning a fake spray tan shade of yellow — and it wasn't clear whether she would need to wait in hospital until the surgery (which might make her higher priority) or whether she will be sent home as an outpatient (which might be more comfortable and relaxing for Rudy).
Kennedy and Mal came by next and I was glad that we had better news for them by that time. We're all realistic about how serious Rudy's situation is, but obviously, even weeks is better than days to get to a place nearing acceptance; months, years, would be even better.
May 9
Things were essentially the same during our visit yesterday — pain being managed by hydromorphone every fours hours, building pressure from trapped bile and constipation — but I do want to report an incredible shift in perspective. Soon after we arrived, Rudy said, "I was able to talk with my financial advisor and she confirmed that I have both critical illness and long term disability insurance. Neither kicks in for three months, but after that, I can collect on it for two years. And by then I'll be sixty and can start drawing CPP, so it'll all be good if it turns out I can't work any more."
What an amazing shift this was to witness: from "There's nothing they can do" to "I've figured out how to fund the next few years of my life." We all understand that we don't even know what kind of cancer she's dealing with — is it even treatable? — but there's no use worrying about the unknown at this point; literally, no news is good news and that fact is having a brightening effect on Rudy (who will remain in hospital until at least a day after her procedure next week).
May 15
It seems incredible that there have been no updates for nearly a week, but Rudy finally texted yesterday to say that she will be transferred to Kitchener today for the procedure (putting in a stent to drain the bile to an exterior collection bag) and will then be brought back to Cambridge for a day or two to make sure everything is moving and draining correctly. She has been in hospital for 10 or so days now, and when I visited her yesterday (as I visit her every day), the yellow in her skin and eyes has become alarming; I've never seen the like. Still no information from the biopsy, but as someone said to Dave, it's good to know that nothing's being rushed (and for now, we're still in that no news is good news mindset).
May 15, pm
Just kidding, I guess. Rudy was given a blood thinner and ibuprofen at some point yesterday, as part of her routine care in hospital, so they couldn't do the procedure today. And since today is the Friday before the long weekend, it has been rescheduled for next Tuesday.
Poor, poor Rudy. She was loaded onto a gurney and driven to Grand River, only for the admitting nurse to ask about what medications she had been given over the prior 72 hours: the blood thinner and the advil were both contraindicated before anaesthesia, so she was sent back to her Cambridge hospital bed to wait for another five days, now without benefit of the advil that keeps the back pain in check.
May 20
First of all: It's so crazy to me that a person can be diagnosed with cancer, kept indefinitely in an expensive hospital room to (barely) manage the pain, and the results of the biopsy takes "5-7" business days, made excruciatingly longer by the presence of a long weekend in the middle of those "business days". Considering the demand, why don't labs and ORs run at capacity, seven days a week? In the end, Dave and I were at the lakehouse over the long weekend (with Rudy's blessing, of course, even if it felt a little wrong), but Kennedy and Zach were in the room with Rudy when a doctor came by with the results of that biopsy. From Kennedy's notes: "It's adenocarcinoma but the biopsy was inconclusive whether it originated in the bile duct or the pancreas. Cancers in that area are called periampullary and are all treated very similarly. There are receptors they can test for to zero in on the specific kind and a bone scan will be done to form a baseline. Rudy's case can now be forwarded to oncology."
Rudy finally was brought to Kitchener to have her stent put in yesterday, and when Dave and I went to visit her last night, she was starting to experience excruciating pain. We watched as she was given her routine dose of hydromorphone and a tylenol, but a half hour later, she was still breathing heavy, wincing and writhing against the pain. Rudy finally buzzed for help, and a PSW responded, saying she would alert the nurse. The PSW returned to say that Rudy's nurse was on break but she did say that she had been given all the painkiller that she was allowed to have for the moment. This was obviously unacceptable and I asked if she could have an advil (because I knew this had helped before). The PSW explained that Rudy's nurse was still on break. I blinked and said, "There must be another nurse?" And the PSW nodded and left to ask her. That nurse came in and said that Rudy's chart had a hold on it for advil and Dan and Dave and I, pretty much all at once, said that that hold was because she was having a procedure, and as that procedure was now done, it couldn't possibly be a problem anymore. The nurse looked at the clock and said that only a doctor could remove the hold and Rudy's doctor had probably left for the day. I blinked at her and said, "Surely there's another doctor?" She kind of sniffed at me and said she'd ask the doctor on call. And someone else returned a short while later with an advil. Throughout all of this, Rudy was in obvious and debilitating pain and I have no idea why that wasn't taken more seriously. (Side note: during this time, someone came in to deliver a dinner of meat loaf and gravy, despite Rudy being on a full liquid diet due to her constricted duodenum, with this person insisting that the procedure she had had that morning meant she could have solids again; overwhelmingly pungent meatloaf delivered despite Rudy having requested a vegetarian diet. The unwanted dinner was removed to the hallway as it was making Rudy gag.)
And speaking of "does anyone even read the charts around this place?": Rudy eventually explained that when she had woken up yesterday morning, she buzzed for the nurse and said that since she was to be brought to Kitchener for a procedure, she would need her painkillers on schedule and her IV removed so she could clean herself up. Her nurse (the same one who would be on break at the end of the day) looked at Rudy and said, "Procedure?" Rudy said yes, in Kitchener. The nurse was still confused, "Were you brought in from Kitchener?" Rudy said no, leaving out the fact that she had had this same nurse the week before, in the same room, and had not found her to be very on the ball at that time either. Still confused, the nurse asked if Rudy's family was coming to drive her, and, incredulous, Rudy said no, she was expecting the same medical transfer that had brought her the week before. Except, unlike the week before, the pick up time of 8:30 arrived and no one came for her, so Rudy walked down to the nurse's station to look into it herself (because, as she told me later, if something went wrong and she didn't get the procedure yesterday, she was going to "lose her bananas".) Rudy was reassured that everything was on track, and when she got back to her room, the nurse entered and started to prepare a large glass of the liquid laxative that Rudy had been taking for constipation. Rudy stared at her and said, "I can't have that. I've been nil by mouth since midnight. Because of the procedure." The nurse tried to explain that it was ordered, but luckily Rudy knew better than to take it (and between us we agreed that not everyone would have known to decline something a nurse in the hospital was handing you.)
We left not long after Rudy got the advil — she seemed to be settling into sleep — and Dan texted later to say that the pain had finally broken. Overall, not a very impressive day.
May 25
Rudy was finally released from hospital yesterday and we got to bring Meeko home (I would have kept him longer, but Rudy was looking forward to it.)
She had had a surgeon come and explain to her that pain was to be expected in the aftermath of the kind of surgery she had had, and honestly, that just makes it worse that her pain had not been managed well. They had put a stent to an external bag to collect bile, and also a tube internally that should eventually take over the whole job. They did try removing the bag before she was discharged but the bilirubin numbers weren't where they ought to be, so they put it back on and taught Dan how to flush it when it gets full.Overall, just good to see Rudy home and smiling again. She will meet with the oncologist for the first time next Thursday, June 4; nearly a month after diagnosis, not that anyone's counting.
June 5
After a frustrating week of dealing with a poorly functioning bile bag (with a couple of trips to Paramed and even one to the emerg to have it sorted), Rudy and Dan met with the oncologist yesterday; reporting back to us that everything went really well. As Rudy said, her disease isn't curable but it could be controllable (she even used the word "remission", as in hopefully, but that is so positive I can barely believe it). She'll be starting chemo and immunotherapy next week, and she is all but guaranteed to lose her hair (which she is already being a good sport about). Interestingly, she has the same oncologist who treated my brother, Ken, and when she told him that Ken had always spoken highly of him, Rudy says the doctor seemed genuinely touched. The doctor then sent Rudy back to Grand River to see if the radiologist there could look at her stent situation.
Dave and I have been at the lake for the past week — we do need to get the house ready for renters, but it feels a bit like an abandonment (of course Rudy said, "Don't you dare feel that way.") This would be a good time to mention that Dan has been so wonderful and supportive through all of this. Having turned sixty-five and retired in March, he couldn't have imagined that his retirement would immediately involve this hands-on nursing role, but it's such a blessing that he could be present every day that Rudy was in hospital — for company, to advocate, performing dozens of caring and practical duties every day — and he's doing a simply great job of taking care of her now that Rudy's home as well. Truly, thank God for Dan.
June 15
Dave and I were at the lake again — for the last time 'til August, so we will be more present from now on — and we visited with Rudy yesterday for the first time post-chemo. We had been taking care of Meeko since the night before Rudy's treatment, and despite offering to hold onto him for as long as they may need, Rudy asked for him to be dropped off on our way home. We did so, went home to unpack our bags, and then went back with dinner for a visit.
All Rudy can really report is that the treatment went well — two rounds of chemo and one of immunotherapy, all completed within about four hours last Thursday; mostly discomfort-free — and she has been only slightly nauseous (hundreds of dollars worth of anti-nauseants for someone without drug benefits should really do the trick), and more than anything, she's just been tired (Dan said she has probably been sleeping about 80% of the time). I asked how her pain levels are and Rudy said that it's all about the same: the pharmacist told her to avoid the advil as much as she could (because it's so hard on the stomache), but Rudy said that sometimes it's the only thing that will touch the back pain; she finally gave in and took an advil on Saturday afternoon after trying to muscle through the pain all day and she ended up falling asleep on the living room floor and had the best sleep she had had in a while; sounds worth the risk.
Rudy still has the stent draining bile to an external bag, can only eat certain things in small amounts due to the narrowed duodenum, and she has a hard time getting and staying comfortable. On the other hand, the jaundice is pretty much all cleared up and she is only at the beginning of her treatment journey. I just feel so positive about the messaging (the disease can be "controlled" even if it is advanced) that maybe this impulse to track my loved one's final arc is woefully premature; and I sincerely hope that is true with every part of me. Here's hoping that we're at the very long and boring part of treatment and recovery.
June 24
Rudy was supposed to have her second round of chemo last Thursday, but unfortunately, her body wasn't up for it. Feeling weak (due to an inability to eat) and not having had a bowel movement in nearly a week (one supposes from the lack of eating), the oncologist was hesitant to put more strain on her body. Rudy wasn't totally disappointed, though: she met with a nurse and a nutritionist and they gave her some really helpful information for going forward (calories are super important, so even a milkshake is better than nothing if she doesn't feel like she can put solids in her tummy; a liquid laxative can be split into small shots throughout the day if that's the only way to get it down, etc).
She did have a frustrating weekend, however. The bandage on her external stent felt pretty consistently wet, so she and Dan went to Paramed to have it looked at. Turns out that the site was infected — the weepage was pus — and she also had a UTI; antibiotics were prescribed. An ultrasound was booked for the following morning at Grand River Hospital, and after having both the ultrasound and a CT scan, Rudy and Dan sat around the ER for another six or so hours without anyone checking in on them. At around 7 pm, Dan went and told the nurse that if they weren't going to be seen again, they should take out Rudy's IV and let them go home and rest. So that's what they did (and boy, was Dan mad telling the story later).
The next morning, Grand River called and asked if Rudy could come in and have a procedure done to clear the stent (which apparently wasn't working properly, according to the scan which had now been read), and after the procedure was completed, the stent started draining like crazy (which is a very good thing because her bilirubin numbers were going up and she won't be able to have her chemo again next week if they're not down below 60).
Yesterday was the funeral of Dave and Rudy's Aunt Suzie, and naturally, Rudy wanted to attend. This is the first time her extended family would have seen her in months, and she does look thin and weak and drawn, just slightly yellow from the recent build up of bile, and the pain makes her walk slowly and gingerly. Rudy was met with much concern — which she mostly tried to smile away — but looking at her through the others' eyes, I have to admit that her appearance is concerning. But, as I told several people yesterday, her disease may not be curable but it is controllable, and this is what I'll believe until I'm told different.
Here's hoping chemo happens next week as scheduled; let's get this mass under control.
July 7
Rudy met with her oncology team last Monday, and because her stats weren't great — in particular, her sodium was really low — the decision was made to push off chemo for another two weeks (now scheduled for the 19th). When Dan told them that this was really devastating news for them, the doctor explained that Rudy's last treatment (and especially the immunotherapy portion) stays in the system for six weeks and that there was little chance of her tumour growing in that time; the experts were comfortable with giving Rudy all the time she needed to get stronger before hitting her with another treatment. They left that appointment encouraged and ready to keep fighting.
But over the course of last week, Rudy just kept getting weaker and more upset: how was she supposed to get her sodium up and her body stronger if she couldn't physically force down, or keep down, nutrition? She was doing her best to choke down Ensure and Gatorade, but even with powerful antinauseants, it all eventually came back up; likely bringing up her pain pills, too, every time. I was there two days in a row, once with Dave, where Rudy broke out in sobs, saying that she had never felt so sick and was sorry that she was putting us all through this. She said, "June was supposed to be my month of getting stronger, and here I am, weaker than ever and can't even get the chemo that's supposed to make me stronger." We said all the reassuring things, but it was so hard to see.
I was there on Thursday when Rudy got a scheduled call from the surgeon who had put in her stent, and after hearing how bad her situation had gotten, the doctor said that he was scheduling a procedure for early the next week — to put in a different kind of stent, a metal cage, within the duodenum to keep it open and allow food and liquid to pass through — and he recommended that she go to the hospital and ask to be admitted for hydration and nutrition. Rudy was horrified by the idea of sitting in an emergency room with what might not actually look like an emergency — and especially when she couldn't get comfortable sitting or laying anywhere in her own home, how could she handle a hard plastic chair for hours on end? — but she said she would go if Dan called 911 for an ambulance, and that's what he did. I grabbed Meeko to bring home and keep out of everyone's way.
In the end, the ambulance was the best decision — the paramedics reassured Rudy that calling them had been the right thing to do — and she was quickly put into what they called the er's quaratine room; essentially a private room within the emergency department, with a proper bed, a private washroom, and peace from the chaos on the other side of the door. Rudy was given hydration and pain meds through an IV, and after she eventually was seen by a doctor, she was admitted back to the surgical floor.
Instead of the nice private room she was assigned last time, Rudy is now sharing with an older woman — which is fine — and once she was settled and I was able to go in and see her, I was so delighted by how plumped and alert she now looks. Rudy was initially given hydration and electrolytes via IV (only water by mouth for now) and was soon switched to TPN (Total Parenteral Nutrition, a milky white fluid delivered via IV), and every day this week she has looked more and more like herself. She is even getting her hydromorphone subcutaneously, direct into her thigh, and has the ability to give herself a little extra boost when she's starting to feel uncomfortable. Rudy is well on track to have her procedure done tomorrow.
And as happy as we all are that some relief might be in sight, I am feeling so annoyed that, two months post-diagnosis, Rudy keeps being told to go home and find a way to make herself stronger before she can have the chemotherapy that will shrink the mass that will allow her to properly eat and get stronger again. Rudy has been stuck in a terrible feedback loop that saw her getting weaker and weaker, and this new procedure was an option the whole time? I will say again that I am grateful to live in a country with excellent, accessible health care, but one of the best people I know seems to have been falling through the cracks and it just makes me mad. Here's hoping for a clearer path to wellness ahead.
August 20
So much has happened in the last month or so — most of it not great — and this general malaise I've been feeling seems to have been preventing me from recording the sad facts as they happen. To quickly catch the story up: Rudy had the duodenal stent put in, but it was no magic bullet. Getting good nutrition in has still been a challenge, but at least she hasn't been vomiting any more. Rudy had one more round of chemotherapy, but the following week, her home health care nurse recorded alarming vitals: racing heart rate, dangerously low blood pressure, slight fever, etc. Another ride by ambulance to emerg and an ultrasound later and it was discovered that Rudy had developed blood clots and one lung was filled with them, preventing half of her heart from working properly. She was admitted to a treatment room in the er for oxygen and blood thinners, but without a proper hospital bed that she could control or even a nurse call button — and under orders to move as little as possible (she even had a catheter at this point) — Dan, Dave, and I wordlessly decided that one of us would be in the room with her around the clock.
The medical team decided to send Rudy to Grand River to have a mesh inserted in her groin — the blood clots originated behind one knee and the mesh is meant to prevent more from travelling upwards — and it was plainly explained to Rudy at that point: There was a slim chance that a blood clot would travel to her heart and it would be lights out, a slim chance that the blood clots would be absorbed and she would then be a candidate for further treatment, and in the middle, a large possibility that she would continue to be too weak for further chemotherapy and the disease would take its course within two to three months. And breathe.
Visiting Rudy at Grand River really highlighted how nice and clean and cheerful our local hospital is (but she was a good sport about it all). I saw her there a few days in a row before it was time for me to head off to Nova Scotia on family matters, but after I left, she was apparently moved from her depressing single ICU room to an even more depressing ward (one woman was on noisy dialysis and moaned continuously, one woman had dementia and screamed throughout the night, and the third woman's husband was with her overnight and they talked loudly about the noise; how does anyone heal in that situation?), and then she was suddenly transferred back to Cambridge. They apparently put Rudy in an isolation room, which sounds nice and quiet, but they didn't set her up with her morphine pump — absolutely vital for her constant pain — and with her call button out of reach, no one could hear poor Rudy crying out for help. It took a superhuman effort and untold time to make her way off the bed and lurch towards the double vacuum-sealed doors to find a nurse and relief.
Dave was with me down in Nova Scotia when Dan sent the dreaded message: A candid conversation with the doctor revealed that there is nothing more anyone can do for Rudy; the cancer had spread to the lymph nodes in her back and was now beyond treatment. She was to be sent home with the tools she would need to keep her comfortable.
Thankfully, Rudy's friend, Julia, had flown in to spend the week with her that I was away (especially since we had had to bring Meeko back home while we were gone). And when Dave got back (before me) he helped Dan source a professional-grade hospital bed for their home and was there when Rudy was brought back from the hospital. Dave has decided to retire: to help his sister as much as he can and to slow down and enjoy what time may come for him.
I go over and visit every day and some days she's alert and some days she's drowsy. I'm lucky to see both kinds of days: Rudy's old friends Jenny and Debbie came from four hours away one day and Rudy was nodding off throughout their visit, the same happened the other day when her cousins Bernadette and Mike came from even further afield. Kennedy and Mal visit when they can; generally with good results. Here's Kennedy blowing out the candles on her birthday cake, which she was able to share with her auntie on the 15th:
Rudy told me that the other night, after Dan had tucked her into her hospital bed and had gone off to his own room, she could feel the beginning of a panic attack; like she was "facing reality for the first time". She texted Dan and asked if he could come hold her hand for five minutes, and of course he came running. Not her first panic attack, Dan was able to get her a Lorazepam and they sat together, crying until they couldn't cry any more. I have no idea how things will look from here on out, but it ain't pretty so far.
August 21
We didn't actually visit Rudy two days ago — she had a housecall from the Home Care Coordinator, and by the time that was wrapped up, four hours later, Rudy was pretty wiped out and said we should just get together yesterday. Dave and I picked up Chinese Food for lunch, made our way over, and as I was scooping fried rice and chow mein into my mouth, I asked if they had learned anything interesting from the meeting the day before.
Dan explained that the Coordinator had been joined by a nurse (coincidentally, the same nurse who had facilitated Dave and Rudy's father's transition into hospice) and they had gone over final plans in minute detail. Dan explained that Rudy had been feeling anxious about closing off the financial stuff for her self-employed practise as a massage therapist, so they arranged for their friend/accountant to come after dinner yesterday to pick up all the information and sort it out.
Then Dan said that Rudy insisted that she wanted to go into care before her needs became too burdensome for him. His voice caught and his eyes turned glassy, and Rudy started crying, "I just don't want him to..." Dan: "She doesn't want..." Dave got up and hugged one and then the other — leaving red sauce on the back of Dan's collar — and they resumed the telling. Which funeral home Rudy wants to use, where she will be interred, which hospice to use as back up if Lissard House (where her Dad went) isn't available, etc.
Rudy started choking up again and said, "And Meeko can't ever come home. I don't know what your plans are, but Dan can't take care of him." Dan added, "I could take him, and we could figure things out together, but..." Of course Dave and I both assured them that Meeko is fine with us, not a burden to care for, and that we're in for the long haul. Dan added, "I promised Rudy that Meeko will only go to one of two places: he'll stay with you guys or come home and we'll just figure it out." We assumed this from the beginning, and even if he's not exactly zero burden, inheriting the nutty dog that Rudy had inherited from her (and Dave's) parents is obviously the right, the only, thing to do.
Rudy had another drowsy day as Dave and I sat with her while Dan went out for groceries, and it was a little bizarre when her oncologist's office (who hasn't seen her since she was in hospital in July) called to make an appointment for bloodwork and an office visit on September 10. It seems a bit unreasonable that she, who can barely move from living room chair to bathroom and back, can somehow be expected to make her way to the hospital for an appointment three weeks from now, but it actually lifted Rudy's spirits a bit that there are still appointments being made and the system hasn't forgotten about her just yet. So, there's that.
August 23
Dan called me yesterday morning to say that Rudy had had a terrible night — let's just say that she was totally out of it, nearly unresponsive, as Dan had to bring her into the shower for a cleanup and change her bed linens. Rudy was apparently so upset through this that she said she "doesn't want to live like this" and "understands the available options."
Medically assisted death is certainly an option here in Canada, but not something any of us has discussed in relation to Rudy's situation. It's crazy that we support ending the suffering of our beloved pets but it's still taboo to even imagine in relation to our beloved, suffering, humans. I have no idea how serious she might have been in the moment, but will obviously support whatever decision Rudy eventually makes.
I went over in the afternoon, and by then, Rudy was sitting up in her chair with the TV on. But even as Dan popped out for some groceries, Rudy spent most of her time slumped in a deep sleep. Dan later told me that Rudy's blood pressure was alarmingly low (77 over 60), and while the homecare nurse suggested getting some salty food into Rudy, she wasn't able to eat any of the soup Dan offered her, and by the time I had come and gone, she had had only a couple tablespoons of cottage cheese and a drinkable yogurt. Hard to feel strong without good nutrition, but she's certainly in charge of what she's able to eat.
August 29
Rudy had a meeting with a spiritual advisor early in the week, and it would seem that moving into hospice care was the biggest topic of conversation. When I was alone with her, Rudy said that Dan's heart was broken because of her desire to go into care; he insists that he is in for the long haul and knows that she can't possibly receive the kind of one-on-one attention that he is currently providing for her if she moves into a multi-bed facility. Rudy started crying, worrying about the toll this is all taking on Dan, and I reminded her how she had worked so hard to take care of first her mother and then her father in this same home, but when the job became too much, she knew when it was time to send them into the hands of professionals. I assured Rudy that Dan would know when that time comes for him, and if he insists he hasn't reached that point yet, I'd believe him.
Dave and I went over every day this week and Rudy ate very little, mostly slept in her chair as we visited with Dan. Dave and Dan went out for breakfast yesterday morning and talked about hospice: Dan reiterating that as long as Rudy can still walk between her bed, her chair, and the washroom, he would much prefer to keep her at home. Having gotten there so early, I was probably sitting beside Rudy for about seven hours yesterday, and even with Kennedy joining us with lunch, I don't know if Rudy was awake for fifteen minutes total. At one point Rudy said she needed to go to the washroom, and for the first time that I have seen, Rudy struggled mightily to stand (even with her hands gripping the handles of her walker and Dan supporting her under her arm). I honestly don't know if this is the beginning of the end, but Dan said that besides not eating much of anything, Rudy hasn't been drinking much either. The brief moments that she was awake yesterday really didn't look like much of a life — her voice is weak, her brain is failing as she couldn't remember how to use the TV remote, her abdomen is paining on top of her other pains, she asked me to reply to a couple of texts she received because even voice-to-text is beyond her now — and after we left, Dave wondered if we're looking at a matter of days now. I could certainly see the decline over the course of the week. Dan and Rudy have our support in whatever decisions they need to make.
Sept 1
Two days ago, Dave and I went over to sit with Rudy while waiting for their cousins, Shannon and Jeff, to come for a visit. The home care nurse was with Rudy when they showed up, so we took them down to the family room to wait. Shannon and Jeff are both big-hearted, emotional people, and they couldn't hold back the tears even before they saw Rudy. The visit they had together was about as good as could be expected — Rudy periodically nodding off, all of them crying together as the visit was drawing to a close — and while it may have been hard on Rudy, these final visits are to be expected.
So it was a little alarming to me that when we went over yesterday, Dan was acting a little testy, saying, "Sherry and Ken are apparently coming for a visit this afternoon. I don't think Rudy's up for it, but I guess I can't stop people from coming." Sherry was Rudy's late mother's favourite cousin and a simply amazing human being. In better health, Rudy would have been delighted to have Sherry and Ken stop by for a visit, and as the representatives of that whole (beloved) branch of the family, this didn't seem like a burdensome "duty" to receive them, but Dan is obviously entitled to his feelings on this. Dan is working so hard, around the clock, to give Rudy the best imaginable care, and I can understand him wanting to control who gets to burn some of her precious energy (on the other hand, I understand that he gave the okay for a totally second-tier friend [who he knows and gets along with] to come by this afternoon; his choice in any case at this point.) The visit with Sherry and Ken was nice because they are so nice and easy to talk to — Rudy periodically nodding off but opening her eyes to comment on any kind of family news. It, once again, got teary near the end of the visit, and I gasped internally when, as she was hugging Rudy goodbye, Sherry said, "When you get there, give my Mom and Dad a big hug for me." And Rudy smiled and said, "That's the good part, I know there will be a big crew waiting for me." Sherry nodded and said, "There will be a party for sure." "We'll have a big jig," said Rudy.
No one is really talking about "when you get there", but it's obvious from Rudy's appearance and demeanor that that day is approaching. Dave got the sense from Dan yesterday that's he's annoyed she's not eating more because he thinks she's intentionally hastening her end. I feel bad that his testiness made me warn Kennedy that yesterday wouldn't be a good day for her to stop by after work, but I don't think anything will keep her away from her namesake auntie for long; who knows how much longer we'll have.
Sept 3
Dave and I went over for a visit two days ago, and before he went to help Rudy get out of bed, Dan pointed out a pamphlet on the coffee table titled "Dying in the Community : What to Expect". He quietly said, "Refusing food and water is apparently a natural part of the dying process so I am supposed to stop insisting she eat and drink. Supposed to stop even offering." Poor Dan — cooking for Rudy and trying to buy little treats that she might consume is such a big part of the loving care he's giving, and now he's just supposed to watch her waste away? It made me think that it might be time to start writing the obituary that Dan asked of us, and it occurred to me that it might be nice to ask some of Rudy's old friends and favourite cousins to add a few lines about their time together — it's not like Dave or I was there and know the small details (and there can't be a word limit in an online obituary, can there?). So when I sent out a few facebook messages, I mostly got back "Oh my God, I had no idea she was that bad. When can I come visit?" All I could respond was, "That needs to go through Dan." Nothing else I could say; he's in charge.
When we arrived yesterday, Yvonne the homecare coordinator was just coming out of the house and she stopped to talk to me and Dave. She told us that Ruthann had decided to go into hospice care (which blew our minds: yes, that's what Rudy had decided intitially, but we thought Dan had convinced her to let him care for her at home; yet probably having seen clients become unable to resist their caregivers' wishes, Yvonne struck a defiant note as she stressed, "Since that's the way Ruthann had planned it".) Yvonne also said that she ordered an increase in Rudy's steady stream of hydromorphone because, "Palliative care is supposed to be about controlling pain. Ruthann shouldn't be feeling any pain at this point." So now she's even more drowsy as we wait for a bed at her chosen facility.
We visited for a while (happy that she accepted a bowl of peaches and a drinkable yogurt from Dan, mostly consumed as we sat there) and left soon after Rudy's best friends Jenny, Debbie and Jenny's sister arrived from hours away: probably the only ones who will get through Dan's security perimeter at this point. (Although, to be fair, Dan was more than welcoming to Dave and Mal when they went over this morning; family is a different matter). I can't believe I'm working on her obituary four months after a diagnosis of "this is controllable".
Sept 7
Daily visits are pretty routine — we sit with Rudy while she drifts in and out, sometimes Dan takes advantage of our presence to go out and do some shopping or yardwork, sometimes other family members or neighbours drop by for a visit. When we arrived yesterday, Dan pulled me aside and said, "Well, there was a new development last night. Rudy woke up from a nap and didn't know who I was, how she got here, or understand how it could be 8:30 at night when she couldn't remember any of the day." I asked if she she been scared, and he said no, but once she cleared her head and remembered everything, she had been devastated to realise that she had forgotten the man who is taking such loving care of her. I agreed that it must have been upsetting all around, and Dan was trying to decide if this means the cancer has spread to her brain, if one of Rudy's medications is affecting her cognition, or if it's just a matter of scant calories being available to fuel her brain (and with no further medical intervention, that's a question that can't be definitively answered).
Julia's daughter Reece came for a visit in the afternoon and she sat on the couch valiantly chattering about everything that's new in her life out on the west coast. But as she went to leave when her uncle came to pick her up, Reece broke down quietly crying in Dan's arms at the front door; Dan joining her in tears. Dan's sister and brother-in-law came a while later so Dave and I made our exit soon after that; Rudy conscious for very little of the day. Much like every day.
On a sidenote: Dave talked to Dan about the crowd-sourced obituary we're (I'm) working on, and Dan didn't seem to like the sound of it — I think he is old enough and traditional enough to want just a straightforward (boring) bog-standard newspaper-style brief listing of biographical details, but I think Rudy deserves this kind of love-filled, memory-rich essay. I hope he comes around and agrees that we should ask his son or sister to add the stepmom/inlaw perspective; I really do like having some concrete way to help.
Because I have been reaching out to Rudy's old friends for the obituary, I've been chatting with them about the situation; most of them not really wanting to burden Dan with their questions and concerns. So when I mentioned to him questions that Rudy's friends Jenny and Julia had asked me yesterday, he got a bit testy, "How are you communicating with them? Why don't they just ask me directly?" He also seemed a bit annoyed that old friends Sally and Odile are going over to visit today — he told me that he had informed Sally that they could only come early in the morning or late in the evening, because everyone (including us, I guess) comes in the afternoon and he thinks that's too much for Rudy — and I do feel for Dan that he has to control everything for Rudy, from her hygeine to her visitors, but surely old friends can be prioritised over second-tier friends and neighbours? Dan and Rudy were warned that the wonderful hospice facility that Rudy's dad had been in would be closed for all of September for renovations, but as they only have one other home on their list, I suppose it's understandable that an urgent recommendation for a transfer to hospice is taking time. On the one hand, Dan insists that he is more than willing and capable of taking care of Rudy til the end, but her wishes are her wishes. I wish there was more Dave and I could do to help; to ease the burden on both of them.
Sept 8
Because Dan never answered my text yesterday afternoon asking if it would be a good time for me to come over (while Dave stayed back to work on his eulogy), I jumped in the car, drove over, and noticed that Sally and Odile's cars were still parked out front of their house. Not wanting to interrupt or overwhelm, I came back home, and about an hour later (still no word from Dan), Dave and I decided to go over anyway. Sally and Odile were still visiting (for over four hours), and despite Dan having been testy about their wanting to come see Rudy, when we went out on the deck so Sally and Odile could say a private goodbye, Dan said, "Boy, that's a friendship that goes way back. And the stories they were telling, the Blues Festivals they went to and everything." To myself I was thinking, "Yeah, that's why I reached out to Sally to contribute to Rudy's obituary and why I didn't understand why you kept putting this visit off."
And here's the part that I don't know if I should memorialise, but at this point, I don't know how this story ends: Dan told us in that moment that the director of their preferred hospice had called yesterday morning to offer them a bed and he told them that he wasn't prepared to move Rudy yet. Dave and I were both devastated as Dan said that he had gone to the barely conscious Rudy and confirmed with her that it would be okay to wait for the next bed, and besides, as he keeps saying, she's getting the best care at home. "Really," Dan said, "Rudy only wanted to go to hospice because she didn't want to put this burden on me, and if I'm not at the point where I'm saying 'Oh boy, what a relief", then it's not time yet." I croaked out, "But these were her wishes." And Dan continued, "And besides, I wouldn't be with her around the clock. I wouldn't be with her at two in the morning or four in the morning when she gets up to go to the bathroom like she does here. I am certainly not sitting in a fucking hospice room twenty-four seven, unlike here where I can go to my own bathroom, get something to eat in my own kitchen when I want to, have a shot when I want to. It's not going to happen." Dave said that we had agreed, that like when Rudy was in the ER room, between the three of us, someone could be with Rudy twenty-four seven in hospice. But Dan still looked defiant; this is about his ego and his convenience, and he's taking such amazing care of Rudy, but we felt so helpless and angry (her final wishes are the only control Rudy had over this whole journey, and her partner is denying them) that we both kind of shut down the topic.
And then Dan said that he had been talking to Mike and Brenda the day before about our obituary idea and they agreed with him that it sounds more like a eulogy. "Mike said that an obituary should describe her life and character. He said that what's unique about Rudy is that she's the memory keeper of the family. If you need to know someone's birthday, ask Rudy. If you want to know what's going on in some cousin's life, you ask Rudy." Now, not only is that kind of the theme of the eulogy that Dave's writing, but that morning I had sent Dan the first draft of the obituary that I had compiled from the stories of Rudy's life-long friends, so I said to him, "If you read the email with the draft obituary in it, you'll see that there's a place marked out for someone like Ryan or Brenda to add exactly that; to write the story of what Rudy has meant to your side of the family." But Dan's ego and need for control just made him nod curtly to that with a tight smile.
Because it had been on his mind, Dave asked Dan if he had thought about music at Rudy's service. And Dan said, "Well, no, but it's not like it's a celebration of life or anything; I don't know how music matters. It's not like music mattered to Rudy." This made me huff a bit and I said, "I know Rudy would not want organ music and everyone singing hymns that meant nothing to her (like there had been at Dan's parents' services). I think what Dave is asking about is music while people are sitting in the chairs waiting for things to start. Maybe like some bluesey instrumentals?" And Dan nodded again with noncommital annoyance.
When Dan went inside to say goodbye to Sally and Odile, Dave said to me, "We need to get going before I say something I'm going to regret. Who can we contact to say that Rudy's wishes aren't being followed?" And although I told Dave that I really don't think we have any standing in the matter, I will never forgive Dan if Rudy passes at home. It's such paternalistic BS for a man to think he knows what's best for his partner — even when you can only point to his loving, competent care — and I just want to support the only thing that Rudy actually asked for. We didn't stay much longer, and we left feeling so upset and helpless.
When I got home, I unloaded everything on Kennedy through text messages, and now she's angry too. And she suggested that if Dan won't let me write the obituary the way I want it, we'll just post my version to social media. And if the service doesn't turn out the way Rudy would have wanted, we'll have our own with little sandwiches (Dan told Dave last week that he doesn't know if he'll serve a luncheon for Rudy because, "Do people even really care about that?") and we'll play Jann Arden and Dave Matthews and Nathaniel Rateliff and all the music that Rudy actually does care about. Time will tell how this all plays out.
And to be fair: Dan finally responded to my email last night, saying that he had sent the obituary "to a few in the family" and added a few nice words about Rudy that I suppose is meant to be worked in. I wasn't thinking that "a few in the family" would contribute (because it's working out nicely with all of the stories from lifelong friends; Dan's side of the family's experience is really just one aspect of the biography), but I am happy that he might have seen the love and thought that went into what I assembled. Dave wanted to be mad that Dan's message didn't include anything like "Thanks for doing this" or "This is beautiful so far", but I'm not looking to get mad about anything else; I'm in a bad place already.
Sept 9
I went over to Dan and Rudy's before noon yesterday — a little earlier than usual in case I could be there when anyone official may have shown up — and Dave stayed home to work on his eulogy (and because he was still mad). And when I came in, Dan said that another bed had become available and transport would be coming for Rudy around 1 pm. I was so relieved, but also like, "Would Dan have let us know before the fact if I hadn't been there in person?" What the heck.
I let Dave know what was happening and he soon showed up. And when transport came and asked if anyone wanted to ride in the van with Rudy — Dan said that he'd be driving his car because it was loaded up with everything Rudy would need — Dave volunteered to ride in the van and was able to hold her hand the entire way as she lay strapped to a gurney. (I drove my own car so Dave and I would be able to leave when we needed to.)
The hospice is a beautiful building and the staff showed us the kitchen and sitting areas where anything we might want is available to us. And when Rudy was settled in her bed and we were shown to her room, it was impressive, too. She has a really large space with a couch and two reclining chairs (if anyone wants to spend the night, staff will bring pillows and linens for them), and she has a large, private washroom, huge windows and sliding doors to an outdoor patio space, surrounded by flowers and greenery. The staff were all lovely and friendly and the entire atmosphere is so much better than any of the hospital rooms Rudy has been in. And despite Dan acting like he's still not happy about the transfer, it's a much better situation in which Rudy can spend her final days.
Sept 14
Ruthann passed away peacefully last night at 9:30 pm. Her time in hospice was so brief — barely five days — but without eating or drinking, the ending was inevitable. I know that Dan is probably angry about how this whole thing turned out — after the first day, when Rudy could no longer get out of bed and was given a catheter, he kept talking like it was the transfer to hospice that was hastening her decline instead of the other way around — but as someone who worked so hard on her care, Dan needs somewhere to direct his helpless anger. He pushed back when nurses kept increasing Rudy's steady stream of pain control — and maybe he was right that it didn't need to jump from .8 to 1 two days ago (an unprecedented 25% increase at once) — but Rudy was obviously in discomfort, and while everyone wanted a balance between pain control and her being able to interact with us, I trusted the hospice nurses to put Rudy's needs first.
Dave slept (or attempted to) in her room every night, I'd relieve him around seven in the morning, and Dan would come in shortly after that every day (Dan staying til nine or ten every evening). Rudy had a steady stream of visitors — Kennedy and Mal came every day — and we were very grateful that she was conscious enough to participate in a phone conversation with her old friend Leslie (they were best friends as little kids but Leslie moved out west thirty-some years ago and broke all contact), grateful that she was able to have a breathy video chat with Zach from Amsterdam on Friday. But by Sunday, she couldn't open her eyes any more.
It was hard on Dave when he came back to the hospice yesterday and I told him that Dan wanted to be alone with Rudy last night; Dan said that he hadn't minded going home to sleep in his own bed at night when he knew Rudy would wake up the next morning, but it was obvious that the situation had changed. Many people came through yesterday, many members of Dan's family, and then it was just the three of us when Kennedy, Zach, and Mal came in around two.
We left Dan and Rudy alone around 5:30, went out for dinner, and were just settled in for the evning when Dave received the call from Dan just past 9:30. Dave broke down so hard; feeling like he had somehow failed his sister at the end by not witnessing her passing (I would have also liked to have been there, but it's proper that Dan had the privelege).
Dave and I headed back to the hospice and sat with Rudy's body until the funeral home came to collect her around 11:30. Dave and Dan each made some hard phone calls to the closest of family and friends and then it was time for the final procession. The staff had asked if we wanted a special song playing, and while at first Dan said that he didn't think it was necessary, Dave suggested Cyndi Lauper's True Colors — and as Rudy had told me that was her all time favourite song when we went to see Cyndi Lauper last year, I jumped on the idea. The funeral director pushed the gurney with Rudy's body on it slowly through the darkened hallways as Dan followed with a candle in a hurricane lamp, followed by me and Dave holding hands, and the night-time skeleton crew pulling up the rear with True Colors playing. We walked Rudy out to the waiting van and stood solemnly as it pulled away and the song faded to silence. We went back into the hospice room and packed up Rudy's few things, and that's how it ends; that's a how a whole, big, beautiful life ends.
Rudy is gone. Unreal. Rest in peace, sister.
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