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. 

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?

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. 

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.

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

Hi!

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,

john

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...