for Pat Adair, and the people who love her...

Our beloved Pat got some shocking news recently, and we're off and running on a mysterious medical adventure. Not an adventure we would have picked, but we're off just the same... (If you're new to the blog, start here.)

Tuesday, January 22, 2008

One foot in front of the other

All is well, more or less. Mom is still in pretty good spirits, and she's not dancing or playing the piano any less than she was before the diagnosis. She hasn't danced in years and doesn't know how to play the piano, so I guess that's not so surprising. She's going in for her first chemo treatment this Thursday morning, and both Mike and I are going to accompany her.

The main drug she'll be taking is called Gemzar, and it doesn't have many side effects for most people. She's also signed up for a clinical trial of a new unproven drug, taken as a pill, that seems promising. Today, though, they said her bilirubin count was too high for the trial. She had a new blood test, and we'll find out Thursday whether she still qualifies for the trial. It's a blind trial, with only 50% of the patients getting the actual drug, and the rest getting a placebo. Yeah, I know - that's too much information. Mom doesn't have much energy or appetite, and her hip is still quite painful. Her doctor is going to contact her for the shot into her hip joint that should help.

We had a nice 3-day weekend just passed. Mike and Mary came down with their youngest daughter Brooke, and we hung out at the house before having a good Italian dinner that night. And Mom and I went to see "Atonement." It wasn't quite the traditional love story that Patio had in mind, but we liked it.

I'll write again a few days after the chemo and let you know how it's going. Write a comment on the blog, gol durn it, and I'll see that Mom sees it. If you want to be notified when new postings are on the blog, you can sign up with your e-mail address on the Google Groups box on the right side of the page, and you'll be notified. (You'll only get messages about the blog - nothing else.)

Lastly, here's a great photo of Mom when she was about 14, with a neighbor of hers:


Stay in touch - call Patio - write a comment!

Love,
Dave

Saturday, January 12, 2008

The news we feared

Mike and I went with Mom to the oncologist appointment on Friday, and heard what we were afraid we might: Mom has pancreatic cancer, which is treatable, but not curable. The prognosis, then, is pretty bleak - around 25% to 30% of patients will still be alive a year after diagnosis.

The doctor recommends chemotherapy, which in this case sounds like an easy decision in part because most people handle the treatments well, with little nausea and fatigue, and no hair loss. To balance that, lest you get too enthusiastic, is the fact that a relatively small number of patients with this cancer actually benefit from the chemo. The plan is for once-a-week chemo treatments for three weeks, then a week off. This continues for as long as the body tolerates it and as long as it shows benefit. She'll probably start late next week.

I guess that all qualifies as bad news. Is there good news? Mom is a little shocked, like the rest of us, but is in good spirits, amazingly enough. I can't speak for her, but I think we have a lot of things to be grateful for.
  • We have a large and loving extended family, and we had a wonderful Christmas in Utah.
  • Mom is a member of the Mormon church, and they've been incredibly supportive and generous.
  • She also has a lot of good and generous friends who are offering meals, help with errands, and friendship.
  • We have my brother Mike, who has been a pillar of strength during this event and last year, going through his own medical crisis when he had a brain tumor removed.
  • When my Uncle Bob, Pat's brother, died 15 months ago, we had his family to show us how its done - how to be present and loving and supportive as Bob died.
  • And for now, I have my loving Mother. I'm glad I get to spend a lot more time with her during this precious time. Time is always precious, but we rarely know it...
I have one request for the people reading this: don't go silent on us. A lot of times people don't know what to say, so they don't say anything. Or they don't want to feel awkward. Well, feel awkward, don't worry so much about saying the right thing, and post a comment, or call, or write an e-mail. It's a precious time. Like it always is...

Much love,
Dave

Friday, January 11, 2008

On our way to the oncologist

I forgot to tell you that Mom's oncology appointment was moved from Wednesday to today, Friday, at 4:00. Mike and I are going with her.

We're looking forward to getting some answers, even though we're not sure we'll get the answers we want to hear...

Saturday, January 5, 2008

Home

This is Dave writing. Mike and I brought Mom home from the hospital today and she had two meals in the fridge from friends in short order. Mom's happy to be home, but is tired and is surprised how difficult it is to walk, given the pain in her hip. She'd still appreciate company, so feel free to call or come by, but call first.

Here's a summary of what's happening, and some next steps:
  • We'll probably get the biopsy results by Monday or Tuesday, which will determine the type of chemotherapy suggested. With no conclusive biopsy results, they'll have to do a needle biopsy, which isn't too involved.
  • The preliminary result of the bone scan is that there is something unusual where the pain is above her hip, but it doesn't appear to be cancer.
  • We'll meet with Dr. Johl on Wednesday, but the topic will be determined by whether there are biopsy results.
  • There will be more blood tests mid-week as a follow-up on the jaundice treatment.
There are still lots of unanswered questions, but there's nothing to be done about it. It will all be revealed soon enough, I guess. Mom's trying to be patient. I'm staying over Saturday night, but Mom will be on her own, assuming that she can handle it, starting Sunday...

Love,
Dave

p.s. We'll still post information when something comes up, but we probably won't post as often as we have sofar. Add comments if you're inclined - Mom will see them, and I get them delivered to my e-mail.

Coming home from the hospital

A decidedly mixed day today. The level of bile (more specifically, bilirubin) in Mom's blood dropped by half in one day, which is confirmation that the drain tube is working well. The doctor was surprised by how much it dropped. Great!

And the oncologist also confirmed that he's virtually 100% certain that Mom has cancer, which is what caused the blockage in the first place. Not great. But not a surprise, either. As Mom prepares mentally and physically for coming home from the hospital, the reality of what's ahead looms large, and it started to take it's toll later in the day. Mom had a bone scan, which uses injected nuclear material to determine whether the cancer is in the bones. It seems possible that the pain from her hip is related to the cancer, and the scanner operator made a brief comment about "seeing something" but then couldn't say what it was they saw. Given the weekend, we likely won't hear until Monday or Tuesday about the scan results, which is about the same time we'll hear about whether yesterday's biopsy is conclusive.

In the meantime, Patio will be home around noon-ish on Saturday, and is looking forward to having visitors. Please call first, though. Don't feel like you need to say the right thing, or worry that it might come out wrong. I'm guessing that Mom will be needing company and support in a way that she hasn't before.

Thanks again for the supportive messages. You can write Mom e-mails or call starting Saturday afternoon. If you need her contact details, write me at publicdave@gmail.com or call me at 510-282-1133.

Love,
Dave

Friday, January 4, 2008

Less bile, more smile!

That is one corny title. It could be a Hallmark card, except for the word bile. That doesn't make it in very many greeting cards, which I think is a shame.

Anyway, here's the brief synopsis of today's procedure. Dr. Lane was successful in putting in a drain for the bile, which is really great news. And while he couldn't get a proper biopsy like he would have liked, he was able to get some cells from the pancreas, I believe. These should be enough to diagnose the type of cancer, though Dr. Johl will make that call. We'll be talking with both doctors on Friday, and it seems likely that Patio will go home Friday, even though no one has said that definitively. We're trying to get the bone scan before she goes home if we can. It will take about two weeks for the jaundice color to clear up completely.

It was really great having Courtney with us in the hospital today, and I'm happy that she and Brooke posted such loving messages for Patio. I'll be bringing in copies of all the comments to share with Mom tomorrow. Thanks everyone for contributing. It's a big support.

Much love,
Dave

Courtney and Brooke on the way to Utah.

Thursday, January 3, 2008

An update from Courtney, Pat's oldest granddaughter.

When I first got the call that Grandma was in the hospital I was able to go home from work and have a good long cry. The worst part about hearing a loved one is sick is the period of time where nothing is clear. Unfortunately things aren't much clearer but after visiting with Grandma today some things have become quite evident. Grandma can be worried sick about others, but when it comes to her own well being she's fairly easy going. My first thought was that she wasn't coping with the news, I didn't think it was possible that anyone could handle this large of a shock with such grace. However after spending the day in the hospital and hearing the patient hollering next door, his crazy family with the woman in loud fur prints, and the family feud which required a surprisingly foreboding swarm of nurses prepared for a dog pile inspired takedown, it's safe to say Grandma is the belle of the ball with her sunny disposition. (A remarkably smart pun if you could see her bright shade of yellow jaundice.)

Grandma jokes with the nursing staff (while Dave gawks at the beauties that look like they just walked out of an episode of Grey's Anatomy) and she is in high spirits despite the liquid diet and oxygen tubes. For medical updates you'll have to read Dave's entries, but I thought it was important to let everyone know how well Grandma is doing emotionally. I always knew she was Star Valley stock, and watching her today courageously take each step at a time comforted me to no end and I hope it will for you all as well. As Dave said it will be downhill from here, and I don't mean to belittle the situation, but being around Grandma today put me at ease. Grandma is extremely thankful for all the well wishes and as I write this I can hear both Grandma and Great Grandma Anderson exclaim, "Bless their heart!"

I apologize for this rambling entry and so to emphasize; Grandma is and will be going through difficult times on all fronts. But if today's visit was any indication of what's to follow, we will be spending our time with the same beloved Grandma that still puts a Z in her apple pies for Zorro, gives us personalized ornaments for Christmas and always gives more of herself than one could imagine possible.

I love you Grandma. - Courtney

The procedure was quite successful...

We'll post more later. Thanks for all your thoughtful comments. We all really appreciate them.

Love,
Dave

A note from Brooke, Pat's youngest grandchild

I know the sentence I'm about to write is going to make me sound completely lacking of any intelligence but I'm not quite sure how to say it any other way:

Grandma is the most strongest and most caringest amazingest incrediblest person in this whole wide world if I was her I would not have half her strength. She is had the BIGGEST obstacles in her life and somehow she goes over them like the average person does speed bumps on a road. The only complaints she makes are quiet, and all I can think about now that I'm back at home and we're not in Utah is what Grandma said both times she bought all of us a meal, "Of course I'll buy it, I have to to make sure you all still love me."

I don't understand why Grandma goes through all of this stuff.

I was talking to my best friend about what's going on and she said exactly what I was thinking, "Wow, why does your family go through all of these things yearly?"

With Bob, and Great Grandma, and Dad, and now Grandma (for the second round since breast cancer), it's crazy the obstacles we've been forced to overcome as a family. At first I felt as if we were burdened, unappreciated, that all bad things got dumped on us. Then, I transitioned into thinking maybe God and the universe was testing us, seeing how strong our bond as a family was to keep our foundation against the tough winds being thrown at us. But finally I decided it's because it's well known how amazingly close and strong of a family we are. Because not very many people can go through what everyone in our family has gone through and end the day thankful and grateful for every moment lived. I don't know many people who can deal with all of this. But besides that, Grandma I love you and I'm sorry I didn't want to talk to you I don't want you to hear me cry because I can't deal with seeing or hearing the ones I love in pain. I don't know if you remember but I couldn't even talk to Dad when he got out of surgery. but I love you to death and I know we can fight this because our family has dealt with this stuff before and we'll do it again. I love you times a million bazillion. - Brooke

Wednesday, January 2, 2008

Day 2: Uncertainty abounds

This is Dave again. I spent the day with Mom at John Muir Hospital in Walnut Creek, where I'm happy to report that the entire staff is cheery and helpful. Mom's in the oncology (cancer) ward, which might account for the professionalism and good care. There's a section of the hallway with touching plaques donated by families who've lost a loved one, all thanking the staff for their efforts.

Patio had a solid night's sleep for the first time in quite a while, and is in good spirits, in spite of how reasonable it would be to be despondent.

We met with two doctors today, one who is a gastroenterologist, and one who is the oncologist. Dr. Lane, gastro-guy, recommends a procedure that will be carried out in the afternoon of Thursday, Jan. 3rd. It's called an ERCP (Endoscopic Retrograde Cholangiopancreatography); five bonus points for you if you can pronounce it. They'll put Mom under anesthesia (less than you would have for surgery) and insert a flexible fiber cable with a camera on the end of it, through her stomach and into the duodenum, the first "pipe" leaving the stomach. (I'm figuring this out as I go along, so forgive me if I make mistakes - or correct me in the comments.) The device also has the ability to make incisions, perform biopsies and cauterize incisions. There are two primary goals: 1) insert a tube that will drain the bile that is not currently draining, and 2) take a biopsy (of the liver or pancreas?) to determine what type of cancer Mom has.

As the doctor says, if all goes well, both of these will be successful, her skin will return to its normal color, and a (likely) chemotherapy regimen can be determined. If the biopsy is unsuccessful, a needle biopsy from outside the stomach will be necessary (probably on another day.) And if the drain tube doesn't work, it's possible that an external tube will be required. Let's hope that doesn't happen, because you end up with a bag for the bile waste on the outside of your body.

Mom's oncologist, the lyrically named Dr. Jewel Johl, explained that the chemo regimen is determined largely by the type of cancer, and you can't know that until you have a biopsy. At this point, he's quite certain that there is cancer, but can't know what type. He didn't want to speculate about the many possibilities, but did say that it takes 48-72 hours after extracting the biopsy to get the result, and maybe two weeks after that the chemotherapy can begin. Just to complicate things, he also said that the hip pain that Mom's been suffering from is potentially related to the cancer. So the shot that she was so looking forward to for the relief it might provide, will have to wait until after a bone scan. And it's difficult to distinguish cancer from arthritis in a bone scan. Of course. Otherwise it wouldn't be so difficult.

Basically, there are a huge number of unknowns about what may happen even in the next week or two, much less what will come over the longer term. We've all seen how strong the desire is for some kind of certainty: what kind of cancer is this, when does the treatment start, and how long does it last. But the nature of this disease, and indeed life itself, doesn't follow our notions of how it ought to be. But Mom has been so strong and positive in the face of it. She's not pretending like it's not happening, or avoiding looking at it. She's looking it in the face, acknowledging that it stinks, and says that all she can do is take the next step, and face it as it comes.

If you click on the "comments" link below, you can add your own comment, which we'll be sure to get to Mom.

Love,
Dave

Tuesday, January 1, 2008

Pat's shocking news

This is Dave writing, Pat's youngest son. It's late on January 1st as I write this, and we're all just beginning to digest the significance of it all.

Just last week Mom was celebrating Christmas in Utah with the extended family. My brother Mike, his wife, Mary, and their two girls Courtney and Brooke flew with me and Mom to Salt Lake City, and we had a fantastic Christmas with our large family in and around Midway, Utah, near Park City.

We were all pretty tired when we got back, but Mom was so tired yesterday morning that she couldn't catch her breath on her daily walk in the park. Her friend Charlotte took her to the emergency room, and they gave her a bunch of tests. Initially they thought she'd had a mild heart attack, and from where we sit now, that would have been a welcome alternative. After multiple blood samples and a CAT scan, the prognosis is almost certainly liver cancer. Apparently, though, the cancer didn't start there, so it must have come from somewhere else, according to the oncologist, and we don't know yet where else it exists.

Mom ended up spending the night on Monday, 12/31 at John Muir hospital. Mom was sure she'd be in and out, so she didn't call until late in the evening. Mike didn't find out until 10 p.m., and I didn't get his message until just before midnight. Mike came down from Windsor, and I left my friend's house in Lake Tahoe to spend New Year's Day in the hospital, trying to make sense out of it all, and not having much luck. Mom is in pretty good spirits - maybe because she's still in shock about it all - but she's in no pain, and looks completely fine except for the yellow jaundice color of her skin.

The short-term issue is that her bile ducts are blocked, and that needs to be relieved quite soon. The longer-term problem, of course, is the cancer, and chemotherapy is likely the recommended treatment. It's too early to know yet the likelihood of a full recovery, but the initial outlook isn't good. She had another CAT scan this evening, and we'll meet with the oncologist again tomorrow for a more detailed prognosis.

It seems ridiculous to post a message about a potentially fatal disease afflicting your mother, and then focus just on the medical details, as though that somehow captures the event. It can be strangely comforting to get lost in the medical mumbo-jumbo, so you don't have to deal with the obvious: your own mother, whom you've known for your entire life plus nine months, and love dearly, is slipping through your fingers. And you can't do anything about it. I knew this would happen someday - but I only knew it in theory. I still want it to only be a theory...

I love you Mom.

Dave

Christmas in Utah

Mom, Mike, Mary, Courtney, Brooke, and Dave on Dec. 23.

The pond next to the Johnson Mill, where we stayed. It was
started by Bob and Charlene Johnson, Pat's brother and sister-in-law.


The waterfall as it flows out of the pond.