Friday, September 30, 2016

My Final Post

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!

Many thanks...

Many thanks to all those who made John's last days so beautiful.

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.

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. 

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.

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...

Here's to Fentanyl and a Few Small Meals a Day

Saturday was a joy.

The first thing I did when I woke up was to swap out my Fentanyl patches. In so doing, and per my palliative nurse's instructions, I doubled the number of patches I stuck to my stomach.* And within a few hours, I actually felt pretty good. Good enough, in fact, to eat.

So I had a tiny bowl of caprese salad. 

And then a few hours later I had a small fruit and protein smoothie.

And a few hours after that I had another round of caprese. (First lesson in cooking for one: learn to enjoy seeing the same things appear at multiple meals, which, admittedly, isn't hard with caprese.) 

And then still more hours later I had some yogurt.

And then I went to bed.

And then I woke up on Sunday and learned that the multiple small meals throughout the day idea as a solution to abdominal pain was complete and total bullshit. 

* Metaphorically speaking. They actually gave me bigger patches, so I got double the medication with the same number of stickers.  

The Beginning of the End

Friday (last) was a cornucopia of appointments at the SCCA: labs, PA consult, Palliative Care consult, nutritionist consult, infusion, and even a surprise visit from my oncologist. All in the wake of an extended period of chronic pain.

A lab draw's a lab draw, so let's start with the PA consult. My usual PA was on vacation, so my appointment was with one of the others on the team. She arrived with an entourage: the research coordinator for the study I'm on, a nurse from the palliative care group, and a third person whose role I can't recall. And I have to admit, when they came into the room -- four attractive women all seemingly under the age of thirty --  I couldn't help but think of the mean girls.

Which is not to say any of them were "mean." Just the opposite. Like everyone at the SCCA, these four were definitely working hard in pursuit of my best interests as their patient. Unfortunately, I sort of got things off on the wrong foot -- multiple weeks of chronic pain can do that to you -- by insisting there were things they weren't telling me. Specifically, my pain had progressed to the point that it was exactly -- and I mean exactly -- like the pain I'd experienced in the days leading up to my initial visit to the urgent care clinic and subsequent cancer diagnosis. This is to say, I was pretty convinced that whatever tumors had emerged in my colon were back to blocking. 

This had two effects: first, we spent the first ten or so minutes of the appointment with the PA explaining all the reasons why I couldn't have a blockage and printing out copies of the scan reports that substantiated that conclusion; and second, I'd done a pretty good job convincing the group of them that I was bonkers. 

Happily, I had the perfect counterargument to the belief that I was bonkers: I was in excruciating pain. So when we reached the physical examination portion of the appointment and the PA began her palpitation of my abdomen, I shrieked and just about levitated off the table. Suddenly, I seemed a lot less bonkers. 

But I still walked out of the appointment with instructions to keep on doing the same things I'd been doing, only more so. Ah well.

Next up was the infusion. An infusion's normally just an infusion, but this one featured guest stars. First up was the nutritionist. Given the pain causing properties of all the solid food I'd eaten over the previous weeks, I was really hoping the nutritionist might be able to give me some recommendations on ways I could eat without my guts exploding a few minutes, hours or days later. It was a nice conversation, and she left me with a list of foods with high calorie to mass ratios that would be my best choices under the circumstances. She also recommended eating many more much smaller meals throughout the day rather than two or three large meals. 

In the midst of my conversation with the nutritionist my oncologist stopped by. He'd clearly talked with the PA, heard that I was unhappy, and so wanted to check in. Given all that was going on it wasn't the most focused of meetings, but we did talk a bit more about the potential benefits of the trial I'm on and the current treatment focus, and I appreciated that he was engaged with trying to address my current problem set.

The last person who stopped by was the palliative nurse I'd seen the last few times. We talked a bit about the outcome of my appointment with the PA, and she made some tweaks to the instructions. Specifically, she dropped a couple of the laxatives from my regimen, and increased the Fentanyl. In her opinion, it wasn't worth continuing to try a laxative that hadn't worked, and my current dosage of the Fentanyl was low enough that making the smallest possible increases just didn't make sense. If the pain wasn't close to gone, as it wasn't, better to just crank it up.

And so with all of that in play, we (Sib4 and I) stopped by the pharmacy to pick up the new drugs, and headed home. 

Friday, September 16, 2016

The Last Trigger Warning

Previously, I've tried to post warnings when a blog post might cause -- uh, shall we call it unhappiness? -- unhappiness. Well, I think we've reached the point where pretty much any and all of them might fall on the sadder side of the scale. So here's your warning: Things may be sadder than usual from time to time and from here on out.

Additionally, a heads up that you might start hearing from some other people in the near future. I figure the last week is far from as a bad as it's going to get, but blogging was just a bit more than I could manage. So before things get too much further I'm going to give at least one or two additional folks access so that they can at least post updates when I'm too tired, or too drugged, to do it. 

Finally, like all things involved with dying, I had some plans for how to ride (write?) out this blog that just aren't going to happen. The thing I'm rapidly learning about dying, even when you know exactly how it's coming, is that you don't know anything about how it's coming. Things you thought would never happen do, while the things you thought were guaranteed to happen don't. 

Even in a case like mine, we're making it up as we go, and responding to new constraints as they arise. Which is not what I expected but then, as I'm learning, what the hell do I know about anything?

Thursday, September 15, 2016

Ever Had One of Those Situations Where You Thought You Were Doing Something for Somebody Else but Really You Were Helping Yourself?

Note: There's no way for me to write this post without sounding like an egotistical, self-aggrandizing nob. Sometimes, when the shoe fits, all you can do is wear it...

Before I stopped working, my boss asked me if I'd thought about how best to give the people I'd worked with over the years the chance to say goodbye. I had to admit I hadn't, but, happily, some others had thought that there might be benefit to having an event where I could hang out, we could have some snacks and drinks, and a folks could stop by for a chat. 

Last Thursday we had that event. Before it started my boss warned me that I'd be surprised by the number of people that would show up. Indeed. I was surprised by the number of people that showed up. Aside from my friend Anne who flew back from Boston, it felt like I talked with a couple of hundred people. 

And here's the funny thing. Before I arrived, I had thought I was attending for the benefit of the folks who'd be carrying on after I left. I didn't particularly want to be haunting the halls like Jacob Marley, and it seemed the least I could do was give the folks who would find it helpful the chance to say goodbye. But it didn't take long before I realized that all of the benefits from the event were mine.

Like, I suspect, most of the working population, I work in a job that one would generally describe as thankless. My colleagues and I perform our tasks, and we assume (though who really knows?) it has value somewhere down the chain, but for the most part we're guessing more than knowing. And if you don't find the work itself motivation enough, you generally move on to something else. 

But imagine if you could spend three hours at the end of your job listening to people tell you that the work you did had positively impacted them, making the work they did easier to do or better. How gratifying and overwhelming would that be?

That was the gift my my colleagues gave me: three hours of being told that the work I'd spent nine years doing had mattered. 

I've said it before, but there are some gifts that just can't ever be repaid. 

The key to attracting a crowd: have good snacks...

A few of my minions*

* To explain: As part of my job I managed three separate teams. Since I occasionally needed to reach out to them as a group or schedule group meetings and whatnot, I created an Outlook group with the alias, "Minions." Eventually they figured it out, so one of them had T-shirts made that read, "John's Minions" (including the world's worst picture of me), and they all wore them to the event. Have I mentioned how easy it is to look like you know what you're doing when the people you work with are awesome? 

Some Potentially Helpful Reminders

I learned this past week that the blog's recent inability to comprehend and present the fact that Ireland is a separate, and uniquely valuable nation, independent of, and emphatically not part of, the United Kingdom caused a few hard feelings.

I certainly apologize for my geopolitical ignorance (which certainly doesn't stop there), and in an effort to make amends have come up with this list of Five Things that Might Help One to Remember that Ireland Is Its Own Independent Nation and Not a Part of the UK...

#5, The Irish Wolfhound

It's not many dogs that can stand up and look at me eye to eye, so props to the country that produced one that can. And the fact that they also a) look like a little black rain clouds (relative to other clouds, not other dogs), and b) are very sweet and mellow, is further credit to the people that groomed the breed.

#4, American Football

For purposes here, avoid European football. Way too many "international" competitions with teams coming from places that aren't actually nations, so that sport's actually more confusing than helpful. Look, instead, to American football, which loves the "fighting Irish" (of whatever variations or flavors). Not too many "battling English" or "marauding Swedes" out there, but lots of Irish. So thinking of football may serve as a useful reminder of Ireland's independence.

#3, St. Patrick's Day

We don't have a St. George's day, a St. Albion's day, a St. Sebastian's Day or, to the best of my recollection, a St. Anyone's day other than St. Patrick. And since St. Patrick -- patron saint of green beer or something -- is so distinctly Irish, remembering that there's a St. Patrick's Day should help serve as a reminder of Ireland's independent status.

#2, The All-Important Musical Questions

Can you think of any contemporary (to me) rock bands that self-identify primarily as, say, Welsh or Scottish? Go ahead. You can Google it. I'll wait. 

Next question: Can you think of any bands that self-identify as Irish?

Need I say more?

#1, My Friend Anne

Last Thursday, my employer had a wake party going away event, to give the folks that had worked with me the chance to officially say goodbye, rather than have me ghost out the back door and disappear. 

More on that event in a bit.

Imagine how gobsmacked I was when my friend, and former co-worker, Anne walked through the door. Anne and I worked together on various committees and projects from the time I started until 2013(? 2012?), when and left to take a job on the East Coast.  But she elected to spend her hard-earned cash, and well-earned vacation time, to fly back for my event. As someone who has been the target of occasional criticism and lamentation over my weirdo introvert's inability to make friends, all I can say is, how many social butterfly extroverts can claim friends that flew across the country to attend their goodbye events? 

Score one for the introverted weirdos. 

But that's hardly fair. Anne's flight out probably says a lot more about how kind and considerate she is, than it does belie the fact that I'm an introverted weirdo. Which leads to my actual point of mentioning all this in that Anne is from Ireland, and takes great pride in her homeland, and so now I feel a little bad that my blog slighted Ireland's political status as an independent, and uniquely valuable nation, only to have one of its best representatives show up at my event. 

So I, for one, will now think of Anne, and absolutely remember that Ireland is not part of the UK. It seems the least -- almost literally -- that I can do. 

Saturday, September 10, 2016

I'm Ok, Just Tired

Haven't had enough energy to post updates for the last few, generally eventful, days.

Soon I hope.

But I'm still breathing.

Wednesday, September 7, 2016

One of Those Brief Flashes of Enlightenment (by Way of Sib4 and Instagram or Something)

My Balloon Popped

Or maybe it was the fact that it's now raining. Either way, today's balloon ride across the skies above Woodinville has been cancelled. 

So we have rescheduled for next Friday. 

I am very much hoping we do not have to reschedule again. 

Calendaring becomes more and more interesting with each passing day. 

House Rules

(Fair warning: Some of those reading this are going to find it less than cheery, but if you have plans to stop by my condo at any point you may want to slog through it. It'll save some unnecessary surprises.)

Over the course of the past week I've come to realize that I've reached the point where it's time for some house rules. As a result, I'm posting the notice below on my front door. I'm posting a copy here, not because it's relevant to anyone not planning to stop by, but because most of the people who do stop by are also reading the blog and this will give them something of a heads up, thus helping to prevent any unexpected emotional breakdowns on my front porch.

Please read beforeringing the doorbell


The occupant of this upstairs unit (that’s me) has terminal cancer. It’s no biggie -- that’s life (& death) -- and I’m not looking for sympathy. I am, however, looking to minimize the number of times I have to walk up and down the stairs behind this door. So please…

If you’re delivering a pizza –- Ring the bell. No doubt I’ve got visitors and someone will be right down.

If you’re here to make a pitch for a candidate, advocate for an upcoming ballot position or otherwise talk politics –- Can we just not? I know how I’m voting, will be doing so just as soon as I get my ballot, and a three minute conversation with a stranger isn’t going to change anything. But it’ll send me to bed for a two hour recovery nap. The only thing ringing my doorbell will result in is a letter to your organization with a few strong words and a copy of this notice.

If you’re here to sell me something, ask for a charitable donation or otherwise separate me from my money –- Again, let’s just not. Given my situation, I’m not going to subscribe to anything, upgrade my broadband, upgrade my cellphone, make a donation, or anything similar. You’ll just be wasting my time and yours.

If I know you and you’re expected -– Just come in (the door is sticky; it helps to push at the bottom corner with your foot), give a shout and come on up.

If I know you and you’re unexpected –- Same as above, but you might wait for me to shout back before you head up.

In all other cases -– Ring the bell, but be patient. It may take a minute or so for me to make my way down.

One last thing:

Please, please, please don’t let the cat out. I really don’t have the energy to track her down and fetch her back.

Thanks for your understanding,

Tuesday, September 6, 2016

How 'Bout a Round of Mostly Real (if Occasionally Snarky) Answers to Some Mostly Real (but also Fake and/or Rhetorical) Questions?

With the possible exception of a presidential candidate, everyone likes a good Q&A...

Can I have Kevin? 

Unfortunately (for you), no. My colleague and cat sitter will be providing Kevin with her next home. Vickie actually volunteered to take in my generic, to-be-named cat, if the need arose, before I got Kevin. And given how hard it is to pry Kevin out of the house when she stays there, I suspect she'll be thinking she got an upgrade. So it's all good. Kevin's covered.

How long do you think before you'll have to give her up? 

Well, if I was an ancient Egyptian, I'd have her mummified so that she could keep me company in the underworld. And while that seems a little extreme, I figure it might be nice to have some feline company during the, uh, erm, well <insert personal preference of weird uncomfortable words here>.  

At the same time, Kevin's new favorite game may lead to her early eviction. The way the game works is that I sit down and then Kevin tries to drape her body across my lap such that she hits as many of the "oh god, don't touch me there" spots as possible. It seems the cat "wins" -- hey, I don't make up the game, I just get suckered into playing -- when i shriek, stand up and throw her on the floor. 

In other words, the long-term duration of my cat ownership will depend almost entirely on whether or not my providers can get a grip on the abdominal pain.

Speaking of the pain, how's the Fentanyl working out?

There's only one answer that actually counts as an answer, and that's "it works perfectly and all my pain is gone." That, however, would also be completely untrue. Despite the patches, the pain is still very much present. This, then, prompts the follow-up, But is it working at all? To which I can only reply, I have no idea. My pain is, say, a seven (on the Big Hero 6 populated pain scale of 1 to 10) with the Fentanyl stuck to my chest. Would it be nine without the patch? Or even possibly a three? Again, no idea -- but there's no way I'm running the experiments necessary to find out on my own.

Any cool side effects?

Well, at this point it could be the Fentanyl, the Oxycontin , the lack of food and/or myriad other potential causal factors, but I am getting some very weird -- and very vibrant -- hallucinations in transition between wakefulness and sleep. I could've sworn some Asian woman was handing me food as I was lying in bed this afternoon, and was honestly surprised not to find a spring roll in my hand when I woke up.

I was wondering, is there a reason why your abdomen sounds like a broken aquarium, or possibly a pod of cavorting humpback whales? 

Oh, you noticed that did you? I'm sure there's probably a reason, but I can't say I'm optimistic I'll ever find out what it is. Unfortunately, I've definitely noticed that a decline in the quantity, content and clarity of communication between the provider team and I has definitely been part and parcel to this new phase of the cancer experience. 

Since we're talking about embarrassing body stuff, any chance you've found the limit to the number of ways in which your ass can make your life a misery? 

I can say this with complete and absolute certainty: There isn't one.

So should we talk about the hemorrhoids?

Oh, hell no.
Since we're talking about pain again, if there was going to be a gunfight with the weird cancery abdominal pain at one end of the street and a massage therapist at the other end, who do you think would win? 

You could arm the massage therapist a machine gun and a rocket launcher, and the weird cancery pain would still win.

Whatever happened with that clinical trial you were trying to qualify for?

I qualified. I don't -- and won't -- know whether I was randomized to receive drug or placebo, but whatever it is they'll start giving it to me on Friday. 

Any concerns?

Definitely. It's an infusion. Infusions suck. And who the hell knows what the (real) side effects might be? But in the grand scheme of things, I'm actually a lot more worried about the abdominal pain these days than the potential side effects of the trial.

Weird, context-free question: Would it be possible for the host of the American Top Forty radio show to be any more ignorant of how basic statistics, much less cancer diagnoses, actually work? 

After what I heard on Sunday, clearly not.

If it were up to you, are there any words or phrases that you would say should never, ever, be spoken to a cancer patient as if they had meaning? 

Personally, I'd have to go with, "there's always hope."

Last question: clown show or dynastic nepotism?

Oops, gotta run...

Riding the Wayback Machine

If you set your wayback machine to go back forty years and went looking for my family, you'd find us living in Southern California. And if you drove, say, forty-five minutes from our house (note: these are 1976 minutes, not 2016 minutes) you'd also find my grandparents' house and, somewhere in that general vicinity, where my Mum's sister and her family lived.

In short, a fairly closely co-located extended family.

So as you might image, holidays we're pretty much a set routine: we'd all troop to the grandparent's house, and the kids would roam around the hill behind their house or raid the game drawer, while the adults did whatever it is the adults did. And then eventually there would be food. 

And if you were really lucky, the holiday you were visiting would not be one of those during which I barfed all over the dinner table. But let's not waste time thinking about those particular events.

Speaking of time, it is, of course, the nature of time to pass. And it is the nature of things, things like death and divorce, to happen. And it is the nature of kids to get older and to go out into the world to find their own colleges and partners and jobs and careers, and pretty soon an event that filled a house and spilled out into the yard doesn't even require putting the leaves in the dining room table anymore. And then, finally, you're the one leaving and the holiday rituals that defined your childhood become a part of your past.

All normal. All healthy. 

But eventually enough time passes that you realize you sort of miss those rituals. And the more you think about it, the more you wish there was an opportunity to cycle back around and relive one of those (hopefully, barf-free holidays) again. And then cancer enters the picture, and the clock starts ticking, and you decide you'll take what you get, 'cause there's not a lot of time left to be choosy.

Sometimes, though, you just have to be lucky. 

Because with luck, and a little bit of effort from a variety of people, you can turn some some sketchy plans for a weekend BBQ, combined with a few email messages, some work schedule alterations, and a couple of last minute plane tickets into a full-blown family reunion...

Or at least a mostly-blown family reunion. There were a few folks who didn't have enough time to make the scramble, and some members of the next generation are already off pursuing partners and college and life, but still... Given the limited planning time available, the fact that as many people turned up as did was kind of amazing.

I couldn't even begin to identify the last time it would've been possible to take a picture like this. 

And, of course, the afternoon was perfect. Aside, perhaps, from the lack of bacon grease in the food and the contemporary preference for brewed beverages over the distilled, it was about as close as you could get to a family holiday circa 1977. 

So here's to all the cousins and second-cousins, and nieces and nephews, and siblings, and friends who scrambled their schedules so they could make it. In particular, here's to my aunt and my cousin who flew out from Tennessee.

The sense I got is that most everyone found value in the afternoon, but I can't really speak for everyone. I can only speak for myself.

For myself, the afternoon meant the world to me.

Sunday, September 4, 2016

Another Item Off the List -- Plus a Super-bonus, Universal Bucket List Item Check-Off

So I mentioned previously that I was given tickets to Friday night's Mariner game. Which was actually pretty good timing in that a) it's been a couple of decades since I've been to a game, and b) it takes me about ten or twenty years to get over the plutocracy that, despite multiple public votes to the contrary, wound up with the field being built with public funds -- an effective transfer of a few hundred million dollars from the public coffers to the team's owners -- and the fact that despite the public funding, a significant portion of the Seattle public can't afford tickets to the games.

But once you get past all that, I have to admit that it's actually a pretty nice field.


And this was on a night when uncooperative weather kept the roof closed, which is not the best way to see a game. Safeco's definitely better with the roof open.

Unlike the weather, however, the team was very cooperative, scoring nine runs in the second inning. If you're going to put seeing a game on your pointless accomplishments list, you may as well choose a night when the home team wins.

Through truth be told, I actually don't know that they won. When it took sixty-five minutes to get through the first inning, I warned the rest of my part that we likely wouldn't be making it through all nine. 

And we didn't. We left after five -- which was still two-and-a-half hours after the game started.

But none of that is the best part. The best part is that it wasn't even on my list, and I wasn't even trying, but I... to be on TV. 

And who doesn't want to be on TV before they die?

You can tell from my picture that we had pretty good seats, but what you can't see is that on my left was the eight-year-old (EYO), on his left was his dad, and next to that were two empty seats and then the aisle. At some point, the EYO's dad bought him a gigantic package of cotton candy, and at roughly the same time the jumbotron started playing some song that involved cotton candy. 

At about this point, a cameraman appeared and took the two seats next to the aisle. He explained to the brother-in-law that if the EYO could just naturally watch the game and eat his cotton candy, the cameraman would get him on TV. 

And so began the most humorous seven minutes of the evening, as the cameraman starts trying to compose and manipulate the situation so that everything seems "natural," while, in order, the brother-in-law, the EYO, myself and Sib2 (sitting on my right) do everything we can to make it all seem weird and unnatural as possible. And then, of course, there was a commercial break, so the period requiring normalcy got extended while the cameraman waited for the broadcast to resume. Props to the cameraman for hanging in to get his shot. He definitely worked for it.

And then he was gone, and we didn't really know if we'd made the grade or not. However, the brother-in-law cared enough to stay up and watch the rebroadcast and confirmed that the EYO, myself and Sib2 all made on TV, I think just after the commercial break between the third and fourth innings. 

Which matters not at all except, well, hey, I've been on TV. And so by the modern laws of celebrity, and it's primacy over all other human concerns, it's now okay if I die. 

Even if there's only one person in the world who both knows me and saw the broadcast. 

Saturday, September 3, 2016

I Always Wanted to Be a Regular, but I'm Not Sure Walgreen's Is What I Was Thinking

I've never been a huge fan of the show Cheers, but I always really liked the concept of Cheers. Not for a show, but as a way of being in the world. The idea that you could go to a place frequently enough that people would know your name, and know what you wanted to eat or drink before you actually ordered it, always struck me as really kinda cool.

Of course, living in the suburbs until very late in life, and not really developing much of a taste for alcohol until very late in life, didn't leave me with a lot of opportunities to become a regular anywhere.

But I did sort of do it twice.

My first quasi-regular status was at this "cafe" near my office a few years back. Cafe makes it sound nicer than it was, but it was the sort of place where you go in and grab a tray and then they had a grill where they make burgers and hot sandwiches, a sandwich bar where you could get cold sandwiches, and a pretty great salad bar. Eventually, I got to the point where I'd eat lunch there two or three times a week, and I'd always order the same thing. They guy who managed this place would sort of rotate from job to job -- taking orders, prepping food, cashing people out -- and he eventually got to the point where he'd have my order written before I got to the counter. I don't think he knew my name, but he knew what I wanted to eat.

I remember one time I got a salad and took it up to pay and he was cashiering. When I explained I was trying to loose weight, he got really animated and spent a few moments explaining that the trick was swapping soda for water. Didn't matter if it was diet soda or sugared, but drinking soda he was convinced made you fat. He'd lost twenty pounds just drinking water.

When I went back to ordering burgers, he just laughed and said something like, "It's hard to resist a good burger."

And then I got cancer, which made it hard to eat their food, and then my office moved which made it further than I wanted to walk to get there, and so I lost my regular status.

But I think I've picked it up again at Walgreen's of all places. I first noticed this about a year ago when the chemo treatments were sending me to Walgreen's for supplemental drugs on almost a weekly basis. I was standing in line and watching, and I realized this one clerk would ask the people in front of me their name and/or birth date, but I my case she'd just reach back in to the S basket and grab my bag of stuff. After this happened a couple of times, I actually asked her if she remembered by name or had some other trick. As she put it, she had a good memory for names and faces. Which she must've, 'cause that place is always busy.

But what really struck me was what happened this past Thursday. I, of course, looked like the walking dead, dragging my body to the pharmacy, and between the scripts I had filled and the basket full of OTC drugs I had with me, you didn't have to be genius to see that I wasn't having the best day ever. And, of course, my drug record in the computer has to read like a horror novel.

Anyway, the pharmacist was packing up my stuff and she stopped, and looked up at me, and asked, "How are you doing?" After two years of cancer, I can easily tell the difference between someone who really wants to know, and someone making small talk, This woman really wanted to know. So I explained that things were a little rough, but generally I was doing ok. So then she asked if I liked chocolate. And I said, "sure, usually." And she explained that they had some kind of chocolate cake behind the counter and she'd happily give me a piece if I wanted it. 

I laughed, and said thanks, but because I was diabetic that might not be the best choice. At which point she laughed as well, and said if I ever wanted to come in closer to when I was taking my insulin, they'd be happy to give me some of their cake.

I'm still a little confused about what this cake could've been, but I have to admit that I went home feeling better than I did when I came in. She didn't have to me kind to me, but she was. And it made a big difference.