Peace

Dear Friends and Family,

It is with great sorrow but no surprise that I must inform you that Julie passed away on the evening of Sunday, October 10th, 2010, around 10:15 PM.  All indications are that she died without pain.

Julie and I were married for 14 years, and they were the finest years of my life.  Had I known before I married her what I know now, how short our time together would be, and how it would end, I wouldn’t have hesitated in the least.  The joy and laughter that we shared, and the love that started out strong and then deepened to a degree I didn’t know was possible  — these make even this loss and sorrow worthwhile.

And Julie would agree.  Even as late as September, when she had ceased treatment and knew that death was approaching, we would remark at how lucky we are.  We had a home to live in, food on the table, jobs we enjoyed, the love of friends and family, and a wonderful marriage — while so many people cannot claim even one of these.  Life is not fair.  I don’t know why Julie and I were so blessed, but we spoke of this often and we were grateful.

Julie would not have considered herself a social individual.  She taught herself to read well before school, and as a child often found books easier to deal with than many of the kids at school.  And yet, when we look at the people she’s touched in her life, the people who have agonized with us through the entire cancer process, we see an upwelling of care and support that is just amazing.  By way of example, this blog alone has been viewed over 13,000 times since she started it.  That’s 13,000 instances of people caring, of people wanting to know how Julie is doing.  She obviously meant a great deal to all of you, and your care and support has meant a great deal to us.

There will be two celebrations of her life, one here in town where we’ve lived and worked and have so many friends, and another in California where both her family and mine are centered and where we grew up and first met.  In the next day or two I will be e-mailing out specific details of these to all the friends and family for which I have contact information.  If you receive one, please feel free to share the invitation with anyone I may have missed.  If you don’t hear from me, please check with family members, coworkers, or myself for specifics.  While these gatherings aren’t open to the world at large, anyone who has known or been touched by Julie is more than welcome.

I’ve had inquiries about donations or a memorial fund.  I’m not prepared to manage a memorial fund per se.  Instead, if people want to make a contribution, my preference would be that they give to a good charity.  There are a great many people in need throughout the world, and I’d like to think that our love for Julie might lead to helping some of these people.  Below are some charities that Julie and I have had an interest in, but any legitimate charity would be wonderful.

• Hospice of Washington County (http://www.hospicewc.org/)
• The American Cancer Society (http://www.cancer.org/)
• The Oregon Food Bank (http://www.oregonfoodbank.org/)
• Doctors Without Borders (http://www.doctorswithoutborders.org/)
• The Oregon Humane Society (http://www.oregonhumane.org/)
• Mercy Corps (http://www.mercycorps.org/)

For those of you who are just visiting this blog for the first time, the archives to the right hold all of Julie’s posts (and more recently mine) as she made this journey.  In them you’ll hear her up times and her down times, her laughter and her stress, but most of all her courage in dealing with this adversity.

More than anything else I can possibly say, I want to thank you all for caring so much.  It means and has meant more than you can ever know.

-B.

Holding pattern

So Julie fooled us, or maybe we fooled ourselves.  After about seven hours of “end-of-life” breathing, Julie hiccuped a couple of times last night and went back to a more normal breathing pattern.  Earlier in the day one of Julie’s medications was no longer working for her, so the doctors ordered a different one to help provide comfort.  It seems like the change in breathing pattern was as a result that change of medications.

Pretty much everyone who’s been involved thinks that the Julie we know and love is gone.  We haven’t seen any sign of conscious thought for two days.  If the eyes are open, they don’t track anything.  There’s no response to speech or touch.  There are no indications of pain or stress, even though we’ve stopped giving her medications to combat these.  The mind isn’t functional enough to recognize pain anymore.  It’s as if the body is only alive because Julie forgot to switch it off as she was leaving.

The animals know something is up now.  April is our 18 year old tabby cat.  April believes that any idea is a bad idea, unless it’s hers.  If I put her on our bed (which she loves), she’ll immediately jump off.  If I want her on the bed, I have to put her on the nightstand, which she’ll promptly reject by leaving it for the bed.  So I wasn’t expecting much when I put her on Julie’s hospital bed.  April was the only animal in the house that hadn’t had some contact with Julie recently.  To my surprise, rather than immediately jumping off, she wandered around a bit and then settled down on what would be Julie’s lap if Julie were sitting up.  She stayed there quite a while.

As most of you know, Robin is our 6 year old sheltie.  He has a strong “weird” detector.  If anything is weird, he’ll shy away from it.  Things that are familiar can become weird, just because they’re in a different place or turned a different way.  Being picked up is extremely weird.  Being on furniture is not allowed.  So when I picked him up and put him on the hospital bed next to Julie, I also didn’t expect much.  Instead, he walked up to her head and sniffed her.  Then he gave her a couple of small licks on the end of her nose, and paused.  He repeated this a couple of times around her nose and face.  I left him there, and he stayed another minute or two. Being picked up, being on the bed — all definitely weird.  But still, instead of jumping down he stayed to pay his respects.

People are asking about me.  Yes, I’m getting enough sleep.  And I’m eating.  Emotionally, I’m probably in the same holding pattern that Julie is in physically.  I’m not sure what to expect of myself once the body dies.  It might be a crisis where I’ll be useless for days, but probably not.  I’ve been considering the possibilities since Julie first found the lump.  I’ve been mourning since we first got the terminal diagnosis.  Recently I’ve been trying to reduce the things I have to do right after Julie passes, so I could have the room to feel whatever I need to feel.  However it goes for me emotionally, I know I’ll get through it.  I have lots of friends and loved ones watching out for me, and I think I’m pretty well prepared.  You don’t need to worry.  Many of you are quite close to Julie.  Take care of yourselves, too.

-B.

When 20 = 5.5

Right at noon the hospice nurse alerted me to the fact that Julie’s breathing had changed.  She’d started a short, shallow breathing that the nurse referred to as “end-of-life” breathing.  The nurse has been a hospice nurse for five years, and the longest she’s ever seen anyone in end-of-life breathing before they die is 20 minutes.

Until now.  Julie has been in end-of-life breathing for five and a half hours.  There’s no indication that she’s suffering, or even uncomfortable.  The nurse says Julie is the strongest person she’s ever met.

I assume Julie will pass sometime tonight, but I thought that last night too.  Julie will go when it’s right for her to go.  I’ll keep you posted

-B.

Waiting

On early Wednesday morning Julie took a turn for the worse.  The hospice nurse came in and tended to her.  Based on what the nurse was seeing, she revised her lifespan guess down to 3-4 days.

Later in the morning Julie’s heartbeat changed, which told the nurse we were probably looking at more like 4-5 hours.  Julie’s heart recovered, but I don’t think anyone thought she’d make it through the night.

Yet it’s morning, and Julie is still with us.  I’ve been keeping her in medications through the night.  I think she’s comfortable.  She’s mostly unresponsive and apparently unaware of what’s going on around her, as she has been since sometime yesterday morning.

The hospice nurse spent pretty much the entire day with us yesterday, until I told her I felt I could handle it through the night.  At one point yesterday the nurse felt Julie needed a different oxygen machine.  She had to raise a ruckus, but got one delivered in under an hour!  She called me at 7AM this morning, and will be back here shortly.  The support they provide is just great.

I’m not sure how long Julie has with us.  I don’t think it’s long, but no one really knows.  I’ll put up a post when I have more news.

Take care, everyone.

-B.

Dying by degrees

Sometimes people die in an instant.  Other times, they die slowly.  I’ve been watching Julie die for weeks now.  Slowly, her world becomes smaller and more difficult for her.  A few weeks ago she could visit for an hour or more.  Two weeks ago it was 30 minutes.  A week ago it was 15 minutes.  Now it might be 5.  Or zero.

A few weeks ago I started having to walk with her anytime she was moving, because she seemed a little unsteady.  Then she needed a hand getting out of a chair.  Now walking even a few steps alone is out of the question and she can’t stand up at all without a lot of help.  Soon the two of us might not be able to get her standing at all.

At some point for most terminally ill people, the mental functions begin to deteriorate.  Julie started searching for words a while back.  Then she started using the wrong words for things.  Decisions became more difficult to make, and I stopped giving her as many choices.  In the last few days on occasion I’ve had to give her directions around the house — which way to the table, or the chair for example.  Today she asked if this was our home, and then asked me to tell her about “home”, making quote marks in the air with her fingers.

Our dog was one of the great pleasures in her life.  Yesterday I realized that he no longer brought her joy.  If she notices him at all, she seems to find him more of a pest than anything else.

And today we passed something of a sad but expected milestone.  For the first time, she didn’t know who I was.

As I say, I was expecting it, and it doesn’t change my job.  She still trusts me to take care of her and watch out for her.  When I tell her who I am, she believes me.  It’s more like she doesn’t recognize my face than that she doesn’t know who “Brian” is.  At one point she told me that “Brian will know where [something] is.”  This could be a result of the disease, or of the meds.  It doesn’t matter, since we’re not going to take her off of her pain meds in order to clear her mind.  Comfort is the rule of the day — all else is optional.

And the meds do seem to be keeping her comfortable.  That’s a blessing, and all I’m really hoping for.  If the 9/22 guess is accurate, I’ve got something less than 10 days with her.  If we can keep her comfortable through the final stretch, that will be a victory in my book.  I’ll take my victories where I can find them.

I think that’s it for now.  Take care, everyone.  Thank you for all your warm thoughts, your prayers, and your good wishes.

-B.

Getting real

Julie and I knew death was a possibility back in 2007 when Julie first found the lump.  We knew it was a certainty in March, when we learned the cancer had metastasized.  We knew it was going to be sooner rather than later when Julie and Dr. M decided to end chemotherapy in August.  On 9/8 I asked the hospice nurse for her guess as to Julie’s likely lifespan, and she guessed 2-6 weeks.  Today I asked for an update on that guess, and she now guesses 2-3 weeks.  I knew that already, but for some reason hearing it from her made it real.  It’s been a hard, sad, teary afternoon.  I knew this would get tougher the closer we got, and it is.  The only thing that makes it any easier is all the support we’ve been getting from friends and family — and we’ve got that in spades.  Thank you all for caring.

On a more practical note, one of the ways I’ll get the word out when Julie passes is via this blog.  If you haven’t already done so, you may want to use the email subscription feature in the right sidebar.  By subscribing, you’ll receive copies of each new post to your e-mail in-box as I write them, rather than you having to visit the blog regularly.

Julie sleeps most of the time now, either due to the disease or the medications.  The pain started ticking up a bit last week, but we were well below our medication dosage limits so we turned them up a notch and now she’s staying pretty comfortable.  When she’s awake, popsicles have been popular for quite a while, and we were visited by a sudden craving for vietnamese noodle soup last week.  Otherwise, it’s pretty quiet at the moment.

Thanks to all of you for being so supportive. Please know that we think of you, too.

Love to all,

Brian

Guesses, plateaus, and cravings

Brian here.  Bad news is rough, but no news often feels worse.  I’ve been stressing about Julie, wondering how much longer I’d be able to enjoy her company.  On bad days, I thought she might have two weeks left.  On good days, I thought six weeks was more likely.  But of course, I’ve never been through this before so I don’t give my estimates much credibility.  I imagine a lot of you have been wondering, too.

Last week I asked the hospice nurse for her guess.  These folks deal with the dying day in and day out.  They don’t have any magical insight, but they do have a lot of experience to base their guesses on.  Her guess: somewhere in the two-to-six-week range.

I wrestled with whether to share this with Julie.  On the one hand, I couldn’t see that it would help her.  On the other hand, who has more of a right to know than Julie herself?  We’ve never held anything back before, and I couldn’t see a reason to start now.  Ultimately, it came down to the fact that I wanted to share it with her family and all of you, but I was afraid it would get back to her.  I knew that if she heard it, she should hear it from me.  So I told her.

That turned out to clearly be the right thing to do.  Julie doesn’t see some of the changes in herself that I see, and she didn’t enjoy the idea of carrying on as she is indefinitely.  It looked to her like she was staying in place, and it’s not a great place to be.  The knowledge that the end was coming, that pain and pain pills and sleeping nearly around the clock would cease, that was a relief to her.

On the physical side, Julie’s health seems to go in plateaus.  She’ll take a sudden drop in some aspect or another, and then stay pretty stable for a while.  A few weeks ago she suddenly had problems rolling over in bed.  If she’s was uncomfortable laying on one side, she’d have to get out of bed and get back in in order to lay down on the other side.  I don’t know if this muscular or neurological, but it’s the reality she’s living with.

A few days ago, Julie suddenly became too unsteady to walk unattended.  One day she was OK, the next day she needed help.  She can still walk down the hall, but I have to be at her side or behind her, steadying her as she goes.

Then on Friday I came home after being a way for several hours to find her sitting on the edge of her bed.  She didn’t know how long she’d been there, but it had been a long time.  It seems she’d gotten herself up with the intention of laying down in a more comfortable position, only to discover she couldn’t do it without help.  So instead, she sat on the edge of the bed and waited for me.  I don’t really understand the problem, but it’s hers and it’s real and it’s what we need to deal with.

She sleeps a great deal.  I’d estimate that I see her awake about an hour a day, spread out over four or five short segments.  She pretty much only wakes up when she needs something — a pain pill, a bite to eat, etc.

Speaking of eating, she’s prone to cravings.  A while back she developed a sudden (like instantaneous) craving for Taco Bell.  I picked up food from Taco Bell, figuring that she’d have a bite or two and I’d wind up eating most of it.  But no!  She skipped the tortillas, but ate the insides out of two Burrito Supremes in short order.  If I’d known that was going to happen, I would have ordered something for myself.

Another time it was Kentucky Fried Chicken.  This was less of a success, though, as she reported it wasn’t as good as she remembered it to be.  That may have just been a matter of bad timing though.  3PM may not be the best time to pick up freshly prepared chicken — especially given that the store was vacant of customers except for myself.

Yesterday, it was Krispy Kremes.  She wanted whatever they were currently making, but when I got there they’d finished all their doughnuts some hours earlier.  Left to my own devices, I got her a cream-filled glazed doughnut.  I took it home, where she devoured most of it in about two minutes.  For a woman who’s had next to no appetite, that was a great success.

So you see how her time goes.  Lots of sleeping, occasional declines, and rare moments of cravings satisfied.  And when we’re not discussing the possible need for another pain pill, we talk about the joy we have at being in love.  It’s not a good life compared to what we had, but still, we count ourselves lucky.

Paracentesis

With the liver not working as well as it should, fluid collects in the abdominal region.   On 8/8 they used a procedure called paracentesis to remove it (the fluid, not the liver), and drew off 2.1 liters.  Imagine hiding a 2 liter bottle in your belly.  On 8/19 she needed again, and they drew off 3.5 liters.  She was starting to need it again, so today we were off to the hospital for another go-round.  It’s a relatively quick procedure, and I can stay in the room with her while they do it.  I won’t say it’s painless, but it’s mostly painless and just requires a local anesthetic.  The result?  Just two weeks to the day after the last procedure, they drew off 4.5 liters (two bottles!).  It’s a wonder she’s getting any liquids at all for the rest of her body.  In any case, she’s much more comfortable now, and her appetite has picked up some too.  -B.

Not much news

Brian again.   With the sense of urgency rising, family has been coming to see Julie.  It’s really taxing on her, but also really important.  It’s tough.  Some folks have driven two days just to spend such a little bit of time with her.  Then she pretty much sleeps the rest of the day and the next day too. (Not to paint the picture too grim — she has almost zero energy but I don’t think there’s anything imminent about to happen.)   Her 90 year old father made the trip, thanks to a guardian angel that dropped everything to escort him.  A brother and sister-in-law, too. Two uncles and an aunt tomorrow.  Visits are hard, but family is important.

Being far away, the family hasn’t had the benefit of seeing the changes in her day by day.  They tell me they’re shocked at the decline.  Me too.  We were still going out to the movies last month.  Today she wanted to go upstairs, but aborted the mission on the third step as requiring more energy than she had.  She doesn’t answer the phone or the door — she’s usually not awake enough for conversation and it’s fifteen steps to the door.

And yet, amidst all this, she’s watching out for me.  She tries not to call me in the night, because she doesn’t want to bother me.  On the weekends, she’ll lay in her bed awake to let me sleep in.  I tell her to call me anytime, but unless it’s urgent, she won’t if she thinks I’m sleeping.  How can anyone be in the final weeks or months of their life, and still be thinking of others?  What a wonderful, caring woman I married.

Julie said I should tell everyone that the posts will probably appear less often as there won’t be much to report, but that you’re not to worry.  See?  She’s watching out for you, too.

Take care, everyone.  -B.

Details

Brian here.  Julie doesn’t write much these days, so I thought I’d fill in some of the details and subsequent events since her last post.

As Julie described, we met with the good Doctor Medici on Thursday.  Any treatment needs to pass two tests — the doctor needs to believe it’s medically wise, and the patient needs to be willing.  On Thursday chemo failed both tests.  Julie and the Doctor both believed that continuing chemotherapy would do more harm than good.

So, no chemo.  Also no radiation, as it’s not appropriate in this kind of a situation.  (Sorry to be vague — it was discussed and discarded a long time ago and the details escape me.  Sufficient to say it wouldn’t help in our situation.)  Also no surgery:  A) Julie probably couldn’t survive it in her condition (my opinion); B) there are too many tumors to leave anything like a functioning liver.  It would look like swiss cheese, only without so much cheese.

People ask me about the possibility of a transplant.  Again, I doubt she could survive the surgery, but there’s really a more important reason: a life.  Stage I cancer is highly localized.  If you get it and kill it, you’re done.  Stage IV cancer, like Julie has now, means that there are free floating cancer cells throughout her body.  Most of them will die, but some will take root eventually.  That’s why Stage IV cancer is terminal.  We can never find and kill all the cancer cells, so the cancer will always come back.  Now, if there were an oversupply of livers to transplant, maybe it would make sense to give one to Julie and let her have a few more months or even a year or two.  But there’s a severe shortage of transplants available.  It just doesn’t make sense to put one of the few available ones in someone that won’t live long anyway.  Far better to give that liver to an otherwise healthy twenty-something so they have a chance to raise a family and play with their grandchildren some day.  Two years for one patient vs. perhaps four or five decades for another — the choice is pretty clear.

So where does that leave us?  Very frankly, it leaves us where we always knew we’d be.  Julie has transitioned from  therapy to hospice care.  We’ll keep her comfortable and care for her needs.  We won’t extend her suffering and push her through miserable treatments while we try to cure the incurable.

Julie and Dr. M reached that decision Thursday morning, and the hospice nurse made a special trip out Thursday night (thank you Annette).  She told us about all the services they provide, which are extensive.  They’ll be Dr. M’s eyes and ears, so Julie doesn’t need to travel for check-ups.  They’ll handle all her prescriptions, delivered direct to our door, and with a strong focus on comfort.  They provide equipment (the hospital bed arrives Tuesday so Julie doesn’t have to go up and downstairs).  The nurses typically visit three times a week (or more or less if we wish), plus there are health-care assistants that can assist with feeding, bathing, etc.  They have volunteers that can assist with transportation issues or just come in to provide companionship.  Non-denominational chaplain services and physical therapy are available if we wish.  On call nurses are available for consultation and visits 24×7.  And they’re funded solely by grants and donations.  We’ve never thought about hospice organizations much, but now we’re really glad they’re there.

You’re probably wondering what Julie has for a life expectancy.  Dr. M prefaced his answer to that question by saying that studies have shown doctors are the very worst at making these predictions.  Given that, he said he thought we had numerous weeks to a handful of months.  Maybe he’s right, maybe not.  We could lose her today, or six months from now she could be doing so well that I’d need to go to the DMV to renew the handicapped parking tag I got last week.  But probably not.  I’m notoriously pessimistic about these kinds of things, but I suspect I’ll be celebrating Christmas alone.  And now I cry.

—

About visitors: we know we’re in your thoughts and prayers.  Unfortunately, Julie is not really up for visitors.  Sitting up sometimes makes her out of breath — maintaining a conversation (even if mostly just listening) is a struggle.  Know that we think of you, too, and thank our lucky stars to have so many people that care.

And finally, I’ll leave you with a bit of dialog that just occurred as Julie was laying down for a nap:

B: I could read to you if you like.
J: Ahh.  You’re so sweet.
B: See, I told you I was a nice guy.
J:  I know.  That’s why I married you.
B: Oh, I thought it was the good looks.
J: That too.
B: And the chest hair.
J: Well, two out of three’s not bad.

who’s telling whom what?

We went in to see Dr. Medici today expecting to tell him that I was quitting chemo; instead, he surprised us by saying that another chemo would probably do more harm than good. I’d figured on having to convince him, and he thought he’d have to convince me.  So, no chemo for me.

Also I had fluid build-up in my abdomen again (ascites, pronounced ah-sigh-tees) & had 3.5 litres drawn off (when I was in the hospital, they only got 2.1 litres).

All for now,

how are *you* doing?

I’ve been out of touch for so long, and wondering how my friends are doing. E-mail (home, not work) is best, or a comment on this blog.

We see the oncologist on Thursday (way too early) to decide when to resume chemo. I’ll let you know what we decide.

energy, no mobility

I’m slowly regaining energy, but my mobility is still gone south. Walker, wheelchair, recliner, bed; with occasional dinner table activity.

not much new

still weak and exhausted, two-finger typing = no new blog post.

Not Much Energy

Now that I’m home, I’m resting and sleeping a lot; even though it seems as if there’s all the time in the world to post, most of my time is spent either doing the above or trying to build back some strength. It goes so fast (the strength), and doesn’t ever come back all the way.

Congrats to Kristin on her new little boy; congrats to my dad for turning 90. Namaste to all.