Sunday, July 31, 2011

Sunday, July 31 (and Thursday, July 28th)

It's Sunday morning, and I got home an hour or two ago from spending the night at the hospice. Dad was with Mom when I left her and Karen's headed over later. She'll spend the night there tonight, and I'll be back tomorrow afternoon.

Time is very strange at the moment: it feels both like it's moving very quickly, and that it's dragging out endlessly. The quick part is remembering that a week ago, we were still having conversations. The slow part is that this terminal restlessness thing is really not very fun. I am incredibly glad that we are mostly able to be there when she needs us. This morning she was briefly coherent enough to realize that she was having nightmares, but mostly she hasn't been. That said, the vast majority of the time she is simply unconscious -- the bad moments are mostly brief windows before another dose of medication, so they're over quickly.

She was able to swallow one of her medications this morning with a little applesauce, but that's become rarer over the last couple of days. Yesterday, Karen was using a syringe to give her water. And her temperature has started to fluctuate a bit, which is a sign that her body is beginning to shut down. It probably won't be much longer.

As always, thank you so much for your prayers and well wishes. I know I'm not being very good about answering emails, but I do appreciate them.

Thursday, July 28th

Mom's resting comfortably right now, so I thought I'd try writing from the hospice. It's about 1:30 on Thursday afternoon. The past couple of days have been rougher. Yesterday, Dad got here and found that she'd been moved closer to the nurse's station, so that they could keep a better eye on her. And last night, she entered a period of what they're calling terminal restlessness: the nurses had a lot of trouble keeping her in bed (and safe, because she's really not able to walk anymore) and I believe finally had to sedate her. When I got here today she was sitting up in a chair to keep her calm, but I've spent a lot of the past three hours assuring her that it's okay, and that she shouldn't try to get up. There's a nice nurse's aide sitting with me now, because they've put Mom onto crisis care, so she'll have someone with her round the clock. Karen will get here in a little while, and then I'll go home and collect Rory and bring him over to spend the night with Dad so that I can stay here through the night.

She mumbles a little and sometimes seems to say entire sentences, but they're pretty incoherent. I'm honestly not always sure whether she's not making sense or whether I'm just not understanding. But I do know that she understands us. Yesterday, Karen and I were talking about crying in the car and falling asleep the moment we get home, and Mom -- who had seemed unconscious -- sat up, held out her hand, and pulled us close to kiss us. And that time I definitely recognized the mumble as "I love you."

We got several cards yesterday and I read them all to her. I wish I could tell you how she responded but I really couldn't tell much about her reactions. But I believe that she heard and appreciated them, and I know I appreciated them -- knowing how much she is loved makes a hard time a little better.

Friday, July 29, 2011


Apparently I write extremely good cancer updates. I do not think that is a skill to which one should aspire.

Is that all I want to say about that? Maybe. But my dad told me yesterday that I should save my letters because maybe in ten years or so I'd want to write a book, and my reaction was almost revulsion. I do want to write a book -- I want to write lots of books. Fun books. Happy-ever-after ending books. Cheerful, silly, quirky, romantic books. Not books about dying.

And then my aunt said in an email that I should save my emails because they'd be helpful to someone else going through this. That...well, that I would want to do, if I knew how. This is really hard and if I could find something that made it better, yeah, that'd be good. But really, I'm not sure people head to the bookstores to find books about trying to figure out how to say good-bye. I don't know that for a fact, but I'm a compulsive reader and it never even occurred to me. It'd be a good skill to have, though.

Yesterday, Mom entered "terminal restlessness." Apparently she actually even punched a nurse, which I just find really hard to imagine. When I was with her, she steadily tried to stand, trying to get up and move around. She's so frail now that that's impossible, but she really wanted it. I kept telling her that her spirit wanted to move, not her body, and that her body wasn't up for it, and she would calm back down. Once she said, frantically, "Let me go, let me go," and I said, "You can go whenever you want, Mom, but you can't bring your body with you, you have to let it go," and she sort of nodded and then dozed off again. But then the nurse's aide came in and hung out in the room and I was too inhibited to be my weirdly spiritual self, which was probably sort of a pity. Still, the general skills I learned from having a toddler -- acknowledge the feeling, re-state the rule -- worked just fine.

I'll spend the night at the hospice again tomorrow. Really, I'm happier when I'm there, so that's okay. Although in funnier writing news, every time I come home I write an extremely short, M-rated, Eureka story. I don't even intend to, my fingers just type it out on their own. One of them I had to read ten times after I was done because a) it's awesome and b) I wrote it??? It doesn't sound like me, and I don't even remember thinking up some of the lines. I think it just wrote itself. It's really good, though (or at least I think so!)

Wednesday, July 27, 2011

Wednesday, July 27th update

I'm just about to head over to the hospice, but I thought I'd send a quick update first.

I saw Mom on Monday for a couple of hours, but when I say 'saw', I pretty much mean 'saw'. She woke up a little when I got there, but said she'd just rather sleep, so I sat quietly with her while she slept. Yesterday, I stayed for closer to four hours, because I was hoping to be there when the doctor did her rounds, but Mom slept the entire time. She mumbled a few times, and looked restless once, but she never really woke up. I eventually left around 2, figuring that Karen would be the one to be there when the doctor came, but it turned out that Dad was the one who got to catch up with the doctor, so that was even better.

The doctor told him that this progression is normal. They upped her pain medication on Monday evening, because she'd been having some breakthrough pain, and so she probably will sleep a lot. Although it's hard to think that our conversation time with her is completely over, it might be. Dad also asked about timing, and the doctor said it was really about food now, and how willing or able Mom is to keep eating. Although they emphasize that people are all different and predictions are likely to be wrong, she also said not today, not tomorrow, but maybe two weeks, likely within the month.

Sunday, July 24

Things here seem to be mostly status quo. I saw Mom only briefly yesterday, because Karen and her kids arrived at about the same time as Rory and me, so we didn't stay for long. (Five people and a dog is too much for her, I think.) When I went back later in the evening, she was already sleeping, so we didn't stay.

Today I spent a couple hours with her, but again, she slept through most of it. I did notice that the nurse was using applesauce with her pills now: I think that might be jumping the gun a little bit, as Mom said that she could swallow them fine, but obviously the nurse knows that it will get more difficult with time.

Werner L is headed back home tomorrow. He'll come back, but after the past several days, we seem to have settled into a temporary normal. Mom sleeps a lot, and is pretty heavily medicated, but they're very good at the hospice about making sure they stop the pain before it gets bad, so she doesn't seem to be uncomfortable.

Saturday, July 23, 2011

Friday July 22 update

I saw Mom on Wednesday, with Marcia, and she was a lot quieter, and seemed really tired. She mostly kept her eyes closed quietly although still seemed to be listening to us, and sometimes responded. Goodbyes are tough, though, so it makes sense that she'd be a little withdrawn.

I had a dentist appointment yesterday so couldn't get over to Leesburg, but Werner reported that their visits were very similar to Wednesday. He and Dad have been visiting morning and afternoon, and he said that she seemed very quiet and tired.

When I got to the hospice in the morning today, she was just about to eat some ice cream, so that was a good sign. After about ten minutes, though, she lay back down and curled up with her pillows. I pulled out one of her scrapbooks and looked through it, asking the occasional question or commenting, but she was very quiet and didn't volunteer any information. I did give her the messages that you'd given me for her, and she smiled but didn't say much, if anything, in response. When I went back in the afternoon, she had just had other visitors (neighbors) and I knew that Dad would also be arriving soon, so I told her to rest and I'd just sit with her until Dad came and she took me up on that offer. I don't know whether she slept but her eyes were closed.

She looks very yellow and very thin, but she also seems very peaceful. We talked a little bit about things in the house -- I wanted to be sure I knew which pieces of furniture had belonged to which grandparents, and she was able to tell me a bit, describing where specific tables were located and who they had belonged to. But she also seemed uninterested in a way that she wouldn't have been, even just a couple of weeks ago.

I had hoped to maybe run into the doctor today so I could send an update that might be a little more informed than just my opinion, but no such luck, so this is basically just my perceptions. I've never been through this before, not like this, so I don't really have any points of comparison, but I think we can probably pretty definitely rule out the possibility that she will come home at all. I don't think that will happen anymore. And I don't really think that there's a lot of time left, either. If you do want me to tell her anything, now is definitely the time. (That goes for everyone who gets this via forwarded email, too -- please feel free to let me know anything you'd like me to tell her, special memories in particular would be welcome. I like being with her at the hospice but she and I have talked about all our best memories already, sometimes more than once!)

I'm headed back tomorrow. We'll have a family dinner -- Dad, Werner, Karen and her kids, Rory and me -- in Leesburg tomorrow night and I'm cooking, so you probably won't get another update tomorrow. (Although since I'm cooking, other people get to clean up!) But I'll write again on Sunday night or Monday morning. Werner had thought about leaving yesterday, but he's decided to stay for another week.

I get asked how Dad's doing: sometimes he seems fine and other times he seems very, very tired. To be honest, I think the times when he seems fine are when he's trying really hard for our sake, and the other times more reflect how he's really feeling.

Wednesday, July 20, 2011

Emails to family

I realized that I should save the emails that I've written to family members. Not sure why, but it just feels like someday I may be able to read them and process this experience a little better. Right now, it's just day after chaotic day, not a lot of reflection. So this'll be a long, time-forwards post, and then I'll update as the days pass.

Thursday, July 7
I had class tonight, so didn't get home until now and it feels a little late to call. (Almost 10.) Things today went not so great, I think. The doctors confirmed the diagnosis immediately: Stage 4 pancreatic cancer that has metastasized to the liver. Nothing really to do, except her bile duct is apparently completely blocked. Tomorrow they'll operate to put a stent in and hopefully open the duct. My impression from Karen is that if that's not done and/or doesn't work, her time is very short, but Karen was upset so maybe it sounded worse than it is. They didn't want to give Mom any painkillers before the procedure so she was in a lot of discomfort. Also, they immediately decided to admit her and no one was very happy about that. We had thought she'd be done today and able to come home right away and she didn't want to stay in the hospital, so that wasn't fun.

I haven't heard from Karen again, so I hope things are going better and Mom's getting all the pain relief she needs. The surgery is at 1 tomorrow, so I'll let you know when I know something.

Friday, July 8th,
Today's surgery was successful -- they managed to get the stent in and working, so that's great news. Hopefully the jaundice will fade and she'll be in less pain. They also managed to get some cells to biopsy through a brushing procedure -- I'm not quite sure what the point of that is, but apparently there are different types of pancreatic cancer and this will let us know which type it is. I don't think that it makes any difference to the prognosis, so I'm not sure there's any real reason to know, but I guess doctors like to have all the information they can.

Unfortunately, Karen also told me that based on what the doctors saw (on the endoscopy compared to the CAT scan films from three weeks ago) they've concluded that it's a very aggressive cancer: the tumors have apparently grown noticeably in just that time, so that's the bad news.

But it's the weekend and Dad is with her up in Gainesville now. She's eager to get home, but I don't know when they'll let her go. I last spoke to Karen around 7 or so, so it seems unlikely it'll be tonight, but maybe tomorrow.

Saturday, July 9th
Mom's still in the hospital in Gainesville. The doctors have decided they'd like to keep her there until Monday because of the risk of infection from the stent and because she seems very weak. I haven't spoken with her directly, but I suspect she's not too happy about that. Dad is with her now, I believe, but will go home to sleep (it's about an hour away from the hospital) and return again later. On Monday, I'll head up to Gainesville, so Dad can go off to Jacksonville for his last week of treatment. It'll be a relief to all of us when he finishes that.

Dad asked Karen to call hospice on Monday and arrange for them to come out for their first visit early next week. (We were originally scheduled to see them on Friday, but that was when we thought Mom would be coming home from Gainesville on Thursday.) M. has checked out our local hospice for us so we know that it's a reputable and good organization. They work with patients and family to provide at-home care, so will be able to help Mom stay at home once she gets there.

Monday, July 11
It's Monday night, around 6 PM, and I just got home from the hospital and from picking Gizmo (Mom & Dad's dog) up from the neighbors.

We got to the hospital this morning in time to talk to one of her doctors, the gastro-enterologist (I think). The tests last week had gotten "suspicious" cells from the first test (the endoscopy) and nothing useful from the second test (the one where they put in the stent), so he was there to discuss a liver biopsy. We talked a little about what that procedure would entail, and then asked the key question: what would change in her treatment or prognosis based on the test? Turns out the answer was nothing, so she made the decision to pass. That meant that as long as her blood tests came back okay (indicating that the stent was working), she could be released from the hospital today, to home or hospice, her choice.

She chose hospice, so we started the paperwork for that. It was very much her choice: I tried to convince her that home would be nicer because we'd have control over the ice cream supply, but I think she felt as if the hospice sounded restful. And I know that the doctor emphasized that the hospice would have free reign over pain management and be able to give her anything she needed, whenever she needed, and I think that sounded good to her, too. Even today in the hospital, she seemed to be in a fair amount of discomfort, giving the pain a 6 when the nurse asked, so the pain management may be what tipped the scales in the favor of hospice. They assured us that if she doesn't like it for any reason, she can come home and get hospice support at home, so maybe when Dad finishes in Jacksonville, she'll change her mind.

Unfortunately, with typical hospital speed, they decided mid-afternoon that she needed some more potassium (I think, Karen thinks magnesium -- but something in a drip bottle anyway) and wanted an IV started. The drip was going to take four hours, so we wouldn't have been able to get out of the hospital until after 7 and probably not make it to the hospice until 9 or so, so she's staying one more night in the hospital. Tomorrow morning, I'll go up and pick her up and bring her to the hospice. Karen will meet us there and we'll get her settled.

Dad headed off to Jacksonville around mid-day -- I know he'll be glad to get that done and we will be very glad to have him home for good.

*Minor edits for other people's privacy* Mom has decided that she would like you to officiate at her memorial service. I hope that's something you'll feel able to do. It's seems so typical of Mom to me that she's still planning -- the first time I saw her after the diagnosis, she was organizing her closet and clearing off the bookshelves. But she has the readings, the music, and the location picked out -- I was told I could be in charge of the food -- so I think that even if we are not at all ready, she has made her peace with what's happening.

Tuesday, July 12
Another long day but I'm happy to report that after a not-so-good start, it improved a lot.

I got to the hospital around nine and the doctor was in talking to Mom: her liver numbers and white cell numbers had both gone in the wrong direction overnight and he was worried about what might be going on with her stent. He wanted to do another CT scan, with the possibility of a few more days in the hospital. Mom wasn't happy about that, and after some back-and-forth, consultation with the social worker, some more blood tests, and a lot of hours (which gave me time to find her a Jamocha shake from Arby's and some curly fries for lunch), they finally discharged her.

Mom slept most of the way to the hospice, but we got her there and set up by about 4 or so. It seems like a good place -- it's a big room, with a recliner chair and a pull-out sofa as well as her bed, she's got a pretty view from her window of a fountain with a waterfall, and the people were very nice. Most important, though, she was as good or better than I've seen her in days -- alert and talkative and cranky with Karen when Karen tried to be helpful. (I know that last doesn't sound good, but I was happy that Mom was wanting to answer for herself and do things on her own.)

I drove back to the house and picked up Rory, the dogs, and my bird, then stopped for Chinese food, and we all -- yes, both dogs, and the bird, too! -- joined Karen and Mom in her room for dinner. Mom ate more than I've seen her eat since going into the hospital -- some orange chicken, some rice, and half an eggroll. Most importantly, though, she said it tasted good -- that's exciting because it means that despite the bad overnight blood test, the bilerubin levels in her blood are probably going down and the stent is doing its job.

Obviously, it's all just day-by-day now, but I think that getting out of the hospital was good for her, and I was very happy to see her eating and talking. And after she finished dinner, she had a good snuggle with Gizmo, who curled up next to her and let her pet him for a solid ten minutes at least. He's a very peaceful, well-behaved dog!

I have final exams tomorrow and Thursday nights, so unless something goes drastically wrong, I won't be back to Leesburg until Friday. I'll keep you posted if I hear any news, but chances are that my next update will be on Friday.

Sunday, July 17th
The past couple of days have been busy. I did take my exams, which is a relief because at least it means they're over. I'm sure the professor would have rescheduled if I'd needed him to, but I just wanted to finish them. On Thursday, I picked Werner up at the airport and he got to hang out with Rory while I went to class.

Friday, Rory and Werner and both dogs and I went to visit Mom in the hospice. She tired really quickly -- half an hour of the pack of us and she sent us all away, so we went up to their house and waited for Dad to come home. We helped him unload the RV and get settled, and then headed back to the hospice, this time with even more of a pack -- Caroline and Tyler had been at the house and wanted to come home with me, so it was all of us. Again, Mom tired very quickly. I think she was happy to see us, but three kids, two dogs, and four adults (Karen spent the day with her) was too much for her, and we left after only a very short visit.

On Saturday, I took Tyler back to his house, but Caroline wanted to stay with me, so Rory and Caroline and Zelda and I headed off to the hospice. This time we got to spend a solid hour or so -- the kids were great. They stayed in the room for a while, then went off to one of the lobbies and sat there peacefully. Rory is an amazing big cousin, but Caroline is a very well-behaved 8 year old. Mom, however, was in a fair amount of pain and also confused a lot. I don't think she's unhappy; I think she's accepted the situation, but I don't think my hopes that she will come home now that Dad is there to be with her full-time are realistic. I was dismayed by her level of confusion and her level of pain, but her color looks a lot better than it did, and the stent is obviously working so that's good news.

As we left the hospice, Werner and Dad arrived for their visit. It's tough to know what to do at this point, whether to have someone stay with her full-time or whether to let her have some peace and quiet. My understanding is that she was pushing the limits of the painkillers today, so the next step might be to a morphine pump.

Marcia comes tomorrow, so that'll be nice for all of us.

Karen talked to a nurse last week and asked, based on her experience, what sort of timetable she expected. Obviously, that's completely subjective and just a guess and all of those qualifiers, but the nurse said two weeks. Again, just a guess. But based on the way the pain seems to increase daily, maybe a realistic guess.

So, that's my update. I'm headed back to the hospice tomorrow morning, Caroline in tow (although planning to leave Rory at home) so I'll send another email soon.

Tuesday, July 19th
It's really Wednesday morning as I write -- I meant to write last night but I was just too tired after I got home. I'm not used to so much driving!

Mom's had two really good days in a row. After a rocky Sunday, they switched her painkillers again. She's now on morphine, taken as a liquid, mixed with some hydrocodone as needed for breakthrough pain. That seems to be a spectacular success. Over the last two days, she's been in really great shape, which has been nice, especially with Marcia visiting. On Monday, I saw her about mid-afternoon and although she got tired and booted me out so she could have a nap, she was talking about things she still wanted to do (she wished she could take Marcia shopping!) and finding the hospice boring. She was a little confused but not too much so, and it was only about timing of her drugs -- a subject which confuses me, too.

Yesterday, she was really great. Marcia, Werner and Dad visited her in the morning and she was able to visit with them; Rory and I saw her in the early afternoon, and in the late afternoon, we all trooped back, with the two dogs and stayed for a while. Eventually Dad, Werner and Rory headed out to pick up some dinner and Marcia and I stayed and talked with her quietly, reminiscing about some special moments and the way that objects bring back memories. I was wearing a necklace that she and I had bought together in St. Thomas and remembering about that led to stories about other good moments -- Grandma Labar giving Marcia and Mom rings that belonged to their great-grandmother (one of which turns out to be a ring that I wear regularly, without having realized that it belonged to my great-great-grandmother!), a lost necklace, a found ring -- just a really nice, really pleasant conversation that I think all three of us enjoyed. We spent so long that the guys eventually got nervous when we didn't show up for dinner!

This morning, I'm heading over --- oh, in three minutes, so I need to wrap this up! -- and will visit Mom with Marcia and then take Marcia to the airport. I know that a couple good days don't mean an endless stream of good days ahead, but it's been really wonderful to have these right now. Mom has been very present for this time with Marcia, and even talking about maybe coming home if the new pain relief continues to work so well, so we can all hope for some more good days ahead.

Friday, July 8, 2011

Waiting for news

I didn't go to the hospital in Gainesville because it's two and a half hours away, and I have two papers due and two finals next week. I figured I'd stay home and get some work done. I might have guessed that what I'd really be doing is staying home and crying and worrying and pacing around the house aimlessly. And I had something else I was going to write about when I opened this, but I can't remember what it was. Story of my day. My brain is only working in little short bursts.

Sunday, July 3, 2011


Maggie and Karen and I divided up Mom's jewelry yesterday. It sounds creepier than it was. We all sat on the bed with a big pile of plastic bags of labelled jewelry and Mom lay on the bed next to us, telling us stories of what everything was and where it came from, and we systematically picked the things we liked or cared about. I wound up with all the crosses, no surprise, so I can now wear entirely misleading religious jewelry to my heart's content. I hung up one of the crosses -- a stained glass one that my grandmother made -- on my wall and maybe I'll paint my bedroom to match it. It's made of circles of color, the vertical leg starting at yellow at the top and descending through shades of red and the horizontal bar in shades of light blue. If I knew where a working camera was, I'd post a picture.

Later, Henry and Maddie and Caroline and Zelda played in the pool. I wished for a video camera then, a way to capture the ages -- the bickering, the playing, the splashing, the way they explored the edges and tried out the jacuzzi/hot tub/cold tub. Maddie is still too small to have her feet touch the ground, but she's a very capable swimmer. She spent the most time in the tub, probably because in there she could play without the work of keeping herself afloat. She also spent the most time throwing the ball for Zelda. And she liked jumping in the pool, in dozens of different jump styles. The banana -- spread your legs wide and make a split. The macaroni -- flop in like a noodle. I suspect she and Henry would have found a style for any random noun -- or maybe even verb -- that Maggie or I gave them.