John's "WTF? I've got cancer?" Blog
This is my blog about my cancer ("my cancer," like it's a pet or a hobby). I'm starting it because I'm fairly lazy and repeating the same stories over and over as friends and family ask about the latest development seems really inefficient. This also gives everyone access to the same source material, thus minimizing the "telephone" problem. We'll see if it works and how long I bother to keep it up...
Friday, September 30, 2016
Last Words
I want to leave you with something
But I almost forgot
Was it a closing statement
Or a parting shot?
~
Vigilantes of Love
I’m writing this late in 2015, long before it’s necessary but while my
brain still functions well enough to actually put the words to paper. I’ve
watched too many people in the final stages of cancer go from functional to
comatose almost overnight to risk waiting.
Where to begin? Let’s start here…
Don’t be sad. I’m not. I got 49 years on this planet, and that was
actually more than I should’ve had. I was diagnosed with Type I diabetes at
eighteen, so by rights I probably should’ve been dead by twenty-five. So I got
almost twenty-five extra years. Who can be sad about that?
And I’ve had a good life. I’ve had some good friends, done some great
things, and had a pretty good career. Of course, given that I was born in the
late 1960s, raised in Southern California, and grew up to be a straight, white,
tall, male with a decent brain, it probably would’ve been more work to have a
bad life than it took to have a good one. I cannot deny that I was dealt a
winning hand.
But I learned a lesson early on that I’m not sure everyone recognizes:
there’s a difference between a good life and a happy life. And I cannot claim
to have had the latter. I’ve certainly had some happy periods, but by and large
they were relatively brief and separated by much longer periods of something
else. I’ve written here previously that my default affect has been desperate
loneliness, and that has pretty much been true for nearly all of my life. Three
or four decades of loneliness is more than enough. It’s time for me to be
done.*
But before I’m done there are some people I’d like to acknowledge. And
since I don’t want this to turn into an Oscar speech, please (please, please)
don’t feel bad if you don’t find your name listed. I’d never finish if I tried
to name everyone who was ever kind to me or important to me. You all know who
you are. But in any case…
Thanks to Mum and Dad for being Mum and Dad, and doing the best they
could in raising me.
I owe an unpayable debt to my siblings – Kris Bandarra, Tim Streck, and
Catherine Stafford – who were my fellow passengers in our little dysfunctional
family lifeboat, and always there for me when I needed them. I still remember
the Thanksgiving when Mum was going crazy getting ready, and Tim was solicited
to take Cath and me to the movies to get us out of the way. We saw The Fish that Saved Pittsburgh.
Thanks to my extended family – Aunt Sue, Uncle Stan, Cheri, Steve, Lori
and Beth – for more Thanksgivings, and Easters and Christmases than I can
remember. And my sincerest apologies for the inordinate number of times I
caused Mum to be absent due to my stress-induced sickness, and for that one
time I actually managed to vomit all over the dinner table. All I can say in my
defense is that I did warn you that my throat was stuffy.
Next up, all the spouses, significant others, children and others who
voluntarily joined our little clan. The sibs and I didn’t have much choice, but
you guys volunteered (ok, the kids not so much). Thanks for that.
I’ve had innumerable friends throughout my life, and I can’t even begin
to name you all here. But, to quote the Golden Girls, thanks for being my
friends. I owe a particular debt of gratitude to everyone who stepped up when I
was diagnosed with cancer. From comments on the blog to bringing over meals or
sitting with me during chemo, you all made my situation so much better than it
otherwise would’ve been.
As documented throughout this blog, the journey through cancer has
brought me into contact with more healthcare workers than I can even remember,
much less name. I’ve talked about a few of them in past posts, but at risk of
repeating myself, I’m going to mention a few more here. I want to again thank
my amazing surgeon at Group Health, Dr. Amy Harper, who was the best doctor
I’ve ever had care for me. She insisted on treating me as a human, and made a
relatively terrifying situation tolerable. The world needs more doctors like
her. More generally, all the care I received during that first week of
diagnosis was spectacular – and very much appreciated. I also want to thank
Claire Stockhausen, my PA at the SCCA. I don’t know how many patients Claire
must be caring for, but I’d guess it’s in the hundreds. Despite that fact, she
always made me feel like I was the only person she was thinking about. I can
only imagine how difficult her job is, but I can state for a fact that Claire
is phenomenal at performing it. Finally, let’s talk about nurses. The nurses on
the tenth floor at Virginia Mason Hospital. The nurses in the infusion center
at Group Health, and on the infusion floor at the SCCA. I can’t even begin to
name them all, but every single one of them made my experience better. They
were kind, funny, attentive, overworked, concerned, honest, informative, creative
and caring – and they made my experience so much better than it otherwise
could’ve been. Thanks to all of you for all you did to extend my time on this
planet as long as possible, and to make that time the best it could possibly
be.
(Is that the music starting up? Time to wrap up…)
As I said above, I had a good life and a pretty good career. That
career basically spanned two jobs. After finally giving up on grad school, I
spent the first nine years working for the Office of Sponsored Programs at the
University of Washington, and the remainder working for the Seattle Children’s
Research Institute. At both places, the people I worked with were the best:
dedicated individuals doing difficult and frequently underappreciated jobs. I
would not have had the career I had were it not for those people. Moreover,
while it might sound like brown-nosing, it’s a little late for that and I do
need to mention my two primary bosses in those jobs. Carol Zuiches saw
something in me at OSP, and gave me countless opportunities to prove what I
could do and use my skills to their best advantage. I’m grateful. And they say
that no one lying on the death bed says, “I wish I’d spent more time at work.”
The fact that I am leaving this world with so few regrets – I rode motorcycles
across Vietnam, I saw penguins on Antarctica, I took my nieces and nephews to
far away places, I stepped on all seven continents – is due to the compassion
and tolerance of my boss at Children’s, Jim Hendricks. Some debts can never be
repaid.
I would like to note for the record that the happiest day of my life
was August 23, 2008 – my wedding day. The marriage didn’t work out, and fault
for that is largely mine, but loneliness can lead to poor choices. I loved my
wife, Adelia Yee, on the day we got married, and I’ve loved her to this day. I
just couldn’t do it in the way she needed.
Last, but not least, I’m going air a few pieces of laundry. From about
1995 to about 2005, I was part of a family unit with Elaine Ackerman and her
daughter, Cassie. Sadly, things got very difficult – as they sometimes do – and
our little family exploded. But a year after my diagnosis, they found my blog
and Cass reached out to me. It was perhaps the greatest act of generosity I’ve
ever received, as she had plenty of reason to just close her browser and go
back to her life. Instead she became the daughter I never knew I wanted, and
the friend I desperately needed. I’ve accomplished a few things in my life that
were pretty cool, but, again, for the record, the thing I’m most proud of is
Cass. She’s carried a lot of pain – too much of it caused by me – and come
through the other side as the kind of person I wish I could’ve figured out how
to be. The fact that she gives me some of the credit for the good parts of her
is the primary reason I’m leaving this planet not feeling like I completely
wasted my time here.
And with that, I guess I’m done. Weird to think that these 1,500 words
are probably the last substantive, coherent thing I’ll communicate.
My apologies for any hurt I’ve caused to anyone, whether intentional or
inadvertent (which is worse, I wonder). And if anyone out there is worried
about any hurt you think you may have caused me, please, forgive yourself and
forget it. It doesn’t matter in the least.
Live long and prosper…
May the force be
with you…
So
long, and thanks for all the fish.
* For the younger readers out there, here’s one simple lesson I learned
the hard way which might help you get more out of life than I did: when you’re
eighteen years old and a twenty-three-year-old model wants to have sex with
you, YOU SAY YES!
A Lifetime at the Movies
In retrospect, it may not have been the wisest of choices, but I spent
my life at the movies. I loved the movies. Science fiction, horror, drama,
rom-com, kid flick – I didn’t really matter what it was, but put me in a dark
room with a glowing screen and I was happy.
If I was looking to blame anyone for this, there would be two people at
the front of the line. The first would be my dad. My parents divorced when I
was twelve or thirteen and, like a lot of dad’s in his position, my dad wasn’t
really sure what to do with my sister and me on his designated weekend. At the
time he was living in a crappy little apartment next to the Santa Monica pier.
If you know the area, you know that if you start at the pier and drive down
Santa Monica Blvd for a couple of miles, and then turn left on Westwood Blvd
you wind up in Westwood Village, which, in the 1980s, was one historic movie
theater after another.
So my sister and I, we spent a lot of our Dad weekends at the movies.
But then he moved to New Hampshire and the Dad weekends ceased.
Filling the movie gap was my friend’s mom. One of my best friend’s in
junior high and high school had really interesting parents. From an outsider’s
perspective, they were about as opposite as two people could be. His dad was
tall and thin and never really said much. If you saw him around the house, he
was typically watching sports. But his mom was short and kinda round, would
chat up a storm, and she loved the movies. She seemed to want to see anything
and everything that came out. But my friend’s dad wasn’t a movie fan at all. He
liked sports. So if she wanted to see a movie, she’d go alone. And she did.
She’d see the first matinee of whatever movie came out that Friday, and, on her
way in, buy tickets to the first show after school for her son and his friends.
So she’d see the movie, whatever it was, then pick us all up after school and
drive us back to the theater so we could see it. I saw a lot of movies on the
day they were released largely thanks to Scott’s mom. It’s a habit that stayed
with me.
And then there were my college roommates. Best Thanksgiving I recall
was the one where we all elected not to go home, and instead rented stacks of
movies and spent the weekend watching them all.
Like I said, I spent my life at the movies. So in trying to provide a
summary of my life, it occurred to me I could do it with some help from the
movies I saw. I can’t say I saw all these in the year they were released, or
even that these were necessarily my favorites, but at some point and in some
way they were important to me. And oddly enough, strung together like this,
it’s not an entirely inaccurate perspective on my life – or even of my
generation.
Making this made me both happy and sad. I hope watching it produces
only the former…
Tuesday, September 27, 2016
Saying goodbye to Sib 3
It is with excruciating sadness that we, John’s siblings, make this post on his behalf. As many of you already know, John Matthew Streck left this world on Sunday morning, September 25th at 4:03am. John fought to the end and was surrounded by many who loved him in his final days.
We are profoundly sad without our brother and his passing will leave a huge void in our lives. We can’t thank you all enough for your love and support for John. He was simply an amazing human being! He was our super hero.
There will be a few more posts on John’s behalf. John knew this time was coming and he had prepared his final words on his PC. These are being posted without edits or changes in honor of John and his final wishes. Again, many, many thanks for all of his friends who made our brother’s life fuller! He has taught us by example to live fully, love deeply and seek great adventures. We will miss him every day and live by his example, in his honor.
Wednesday, September 21, 2016
Trading Cancer Treatment for Hospice Care
Wednesday (last) morning I received a visit from the hospice care folks. It was an educational visit, and I felt like I learned a lot. There are a number of different providers doing hospice care in Seattle, with the big two being Providence and Evergreen. Because they had immediate availability in their calendar I got connected to Evergreen.
With Evergreen, the bulk of your care is provided at your home by your designated nurse. To start with the nurse will stop by once a week and then, as your health situation shifts, that may increase to a couple of days a week. Additionally, Evergreen has a sixteen room facility where they can move people who need 24/7 care and observation.
But the most interesting thing about hospice is that it's really about who pays. As a terminal patient, you basically have the choice of your oncologist (or whatever) managing your care of having the hospice folks do that. You can always change your mind about who you wish to choose, but you can only choose one at a time. But while your care is being managed through hospice, hospice calls the shorts.
Another interesting thing is that, at least in my case, my oncologist remains a crucial part of the team. As the hospice care nurses are trying to sort out next steps they are likely to reach out to my oncologist to get his opinion on the proper action.
So it really feels like they're bringing all the right people to the table, which I like.
And then there's all the other support personnel that get assigned to your case. I get a social worker
who will stop by every other week or so, and then they have representatives of the various flavors of the chaplaincy. And I'm sure I'm missing a few others.
But the people who stopped by were all very nice, as were the folks I've met subsequently. Now if they can just get their targets achieved, I'll be a very happy boy.
With Evergreen, the bulk of your care is provided at your home by your designated nurse. To start with the nurse will stop by once a week and then, as your health situation shifts, that may increase to a couple of days a week. Additionally, Evergreen has a sixteen room facility where they can move people who need 24/7 care and observation.
But the most interesting thing about hospice is that it's really about who pays. As a terminal patient, you basically have the choice of your oncologist (or whatever) managing your care of having the hospice folks do that. You can always change your mind about who you wish to choose, but you can only choose one at a time. But while your care is being managed through hospice, hospice calls the shorts.
Another interesting thing is that, at least in my case, my oncologist remains a crucial part of the team. As the hospice care nurses are trying to sort out next steps they are likely to reach out to my oncologist to get his opinion on the proper action.
So it really feels like they're bringing all the right people to the table, which I like.
And then there's all the other support personnel that get assigned to your case. I get a social worker
who will stop by every other week or so, and then they have representatives of the various flavors of the chaplaincy. And I'm sure I'm missing a few others.
But the people who stopped by were all very nice, as were the folks I've met subsequently. Now if they can just get their targets achieved, I'll be a very happy boy.
Tuesday, September 20, 2016
The Tuesday Surprise
Tuesday morning was my appointment with the Diabetes Care Center. There's not much to say about that, except that I did point out that I was dying of cancer and so didn't want to spend a lot of time fine tuning my diabetes care. Happily, they were ok with that, so I was able to move on.
But the interesting thing was that while I was sitting in the waiting room I got a call from the scheduler at the SCCA asking if I could come in at 1:00 for a conversation with my oncologist. So I did.
Long story short, after the week or so I'd had, my oncologist decided it was time to stop the cancer treatment and move me onto hospice care. He didn't have enough hope that the clinical trial would do much, and it was clear that the pain I was experiencing was becoming the central core of my problems, and so he wanted to move me into hospice care where ameliorating the pain and increasing my general comfort would be the focus of the provider team's attention.
It sounded good to me, and so I was told that the hospice folks would be stopping by my condo the next morning to explain how things would work.
But the interesting thing was that while I was sitting in the waiting room I got a call from the scheduler at the SCCA asking if I could come in at 1:00 for a conversation with my oncologist. So I did.
Long story short, after the week or so I'd had, my oncologist decided it was time to stop the cancer treatment and move me onto hospice care. He didn't have enough hope that the clinical trial would do much, and it was clear that the pain I was experiencing was becoming the central core of my problems, and so he wanted to move me into hospice care where ameliorating the pain and increasing my general comfort would be the focus of the provider team's attention.
It sounded good to me, and so I was told that the hospice folks would be stopping by my condo the next morning to explain how things would work.
The ER
So Monday (last) was the trip to the ER. My friend Leslie gave me a ride, and then Sib4 showed up a bit later, which was all good since they could keep each other company while I basically tried to avoid falling into a comatose state.
All things considered, it was a pretty dreadful visit. As is always the case in a visit to the UW ER, your provider is basically a trainee. In my case, said trainee had a lot to learn. For example, when dealing with a patient with terrible abdominal pain who, at the moment, is propped up in the bed, one should not just unhook the head support of the bed and drop it flat.
Yeah, that hurt.
And truthfully, the rest of the visit was kind of pointless. The only effective part was that I was given dilaudid, which is a very nice painkiller, but after that I was given a host of laxatives which, for the most part, I'd already taken and which are generally ineffective.
And we won't discuss the suppository, since that was just incredibly unpleasant in so many ways.
But once I'd been given all the ineffective drugs, I was sent on my merry way.
All things considered, I can't really say I'm impressed with my designated ER. I miss the Group Health Urgent Care Clinic.
Saturday, September 17, 2016
Sunday and Monday Morning
I don't really remember much about Sunday except, well, pain. I've written previously, and probably to excess, about my feelings on pain, so I won't repeat myself except to say, Props to anyone who's been put into a position where they have to live with chronic pain. I can't even begin to imagine what that must be like on an extended basis.
Anyway, Sunday was pain day. Lots -- and lots and lots -- of Oxycodone and hyperventilation, but not much else that I can remember now.
But I made it through the day, and subsequent night, and was able to call in to the palliative care center first thing Monday morning. After an hour without a response, I called my oncologist's coordinating nurse and was able to have a chat with her. She promised to get back to me, and hung up to go have some conversations with the palliative care folks, my oncologist, and anyone else she thought needed to provide input.
About forty-five minutes later she called back with some new instructions: go to the ER. And so for the second time in just a few weeks I was headed back to the ER for abdominal pain.
Anyway, Sunday was pain day. Lots -- and lots and lots -- of Oxycodone and hyperventilation, but not much else that I can remember now.
But I made it through the day, and subsequent night, and was able to call in to the palliative care center first thing Monday morning. After an hour without a response, I called my oncologist's coordinating nurse and was able to have a chat with her. She promised to get back to me, and hung up to go have some conversations with the palliative care folks, my oncologist, and anyone else she thought needed to provide input.
About forty-five minutes later she called back with some new instructions: go to the ER. And so for the second time in just a few weeks I was headed back to the ER for abdominal pain.
Learn from My Mistake
We interrupt this tale of the past week to bring you the following emergency life lesson...
If your doctor prescribes you a steroid, be sure to ask why. Lots and lots of times. Many, many times. Repeat yourself liberally. Interrogate him or her freely until you are absolutely convinced that you both understand, and agree, as to why the steroid is a good idea.
Because there will be a price to pay. Specifically, if you're like me, you won't sleep. At all. Possibly ever again.
My doc wanted me to start taking Prednisone, and so today I did. Oops. And the even bigger oops is that I can't for the life of me remember what it was I was trading away my sleep for exactly. I'm sure it was important, but I'm also pretty sure I wasn't really absorbing the fact that this drug was going to have this particular side effect. (They did tell me not to take it late in the day, but the last time I checked 9:30am was not late in the day.)
I hate this side effect. The only side effect I hate worse these days is constipation. So I'm telling myself that the Prednisone was supposed to help with the latter, which is about the only thing that makes it tolerable.
So, yeah. If you wind up in a similar situation, don't take the steroids lightly. Nasty, nasty little drugs...
If your doctor prescribes you a steroid, be sure to ask why. Lots and lots of times. Many, many times. Repeat yourself liberally. Interrogate him or her freely until you are absolutely convinced that you both understand, and agree, as to why the steroid is a good idea.
Because there will be a price to pay. Specifically, if you're like me, you won't sleep. At all. Possibly ever again.
My doc wanted me to start taking Prednisone, and so today I did. Oops. And the even bigger oops is that I can't for the life of me remember what it was I was trading away my sleep for exactly. I'm sure it was important, but I'm also pretty sure I wasn't really absorbing the fact that this drug was going to have this particular side effect. (They did tell me not to take it late in the day, but the last time I checked 9:30am was not late in the day.)
I hate this side effect. The only side effect I hate worse these days is constipation. So I'm telling myself that the Prednisone was supposed to help with the latter, which is about the only thing that makes it tolerable.
So, yeah. If you wind up in a similar situation, don't take the steroids lightly. Nasty, nasty little drugs...
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