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.