Finally. An upbeat day!
I don’t know exactly what caused the change in my attitude, but today was perhaps my first really upbeat day in the six weeks since learning my PSA crept up. I was happy all day and even able to bring a little silliness to the office. It felt good.
I hope it continues through the bone scan on Thursday and the wait for its results.
A fellow prostate cancer blogger, Tim, highlighted a quote from my last post: “Everybody dies. But not everybody lives.” But it was Tim’s comment, “I wonder if [the author] includes tidying the garage, six trips to the dump and a couple to charity shops in [living],” that became an “a-ha” moment for me when I first read it.
I absolutely believe that “tidying the garage, six trips to the dump and a couple to charity shops,” can be included in living.
Sure, each of us should push ourselves to experience things outside of our comfort zone as we go through life, whether we’ve been diagnosed with cancer or not. It’s how we grow and learn. But sometimes those of us in our situation feel pressured to create and tackle that bucket list of crazy things that we must do before checking out to ensure that we’ve lived our remaining days to the fullest.
I wasn’t planning on climbing Kilimanjaro, paddling the Amazon, or bungee jumping off the New River Gorge bridge before my diagnosis, so why should I feel compelled to do those things now? Will doing those things make my life more complete or make me feel that I’m living? Perhaps. But doing those things that we enjoy the most—even the mundane decluttering—is also living.
In fact, we’ll likely cherish those moments that we routinely derive pleasure from much more than crapping in our pants as we plummet a few hundred feet head-first towards a boulder-strewn river, with the only thing between us and certain death being a giant rubber band tied around our ankles. (Can you tell bungee jumping is not on my bucket list??)
We already have enough stress and pressure in our lives dealing with the cloud of cancer; we don’t need to add to it by trying to live up to contrived societal expectations set in some trite song lyric—Live like you were dying.
So my epiphany this morning was that I get to define what living means. Living means doing those things that make me happy.
You can send me a postcard from the summit of Kilimanjaro. I’ll live by strolling along the beach, creating a complex spreadsheet, photographing desert flowers, or going on one of my infamous cross-country road trips to color in my map.
I was going to use this interesting article from the New York Times: Cancer Survivors Celebrate Their Cancerversary, as a basis for last month’s regular post, but then I got my PSA results and things went to hell in a hand basket. After reading the article, I originally wrote:
Regular readers of this blog know that I’m one to remember dates and anniversaries, but I generally fall into the category of reserved celebration, I guess. Yes, I’m around to hit another milestone, but that damned little cancer recurrence cloud will be over my shoulder for the rest of my days.
Little did I know that that cloud would begin to grow in size, mirroring the growth of my PSA.
It’s been a difficult five weeks, and I’ve struggled with what to write for this post. That’s because I’m still struggling to figure out what’s happening and just how I’m responding to it. It’s hard to articulate something when you haven’t exactly figured out what you’re feeling. It’s been all over the place.
The raw emotions have subsided, but there have been two lasting side effects of the notion that my PSA is creeping closer to recurrence.
First, it’s been as though I’ve taken a bad spill and the wind has been knocked out of me. I feel as though the I’ve been sprawled out on the ground, disoriented, for the last month, trying to regain my breath before I can get back up and function normally again.
Part of me wants to simply stay on the ground, but the other part of me is trying to snap me out of that mindset and to engage in life at full speed ahead. As the surgeon, John Healy, in the NYT article said: “Everybody dies,” he said. “But not everybody lives. I want you to live.”
So do I.
The second side effect has been that the anger remains at various intensity levels. My fuse is generally shorter and I don’t tolerate silly very well at the moment. And “silly” can be even the littlest of things. I really have to watch how I interact with those around me so as not to have them bear the brunt of my frustration with my current situation. I’m not the same person I was in March.
Keeping this hidden from those around me may be adding to that sense of anger, so perhaps it’s time that I come clean with them. And if it doesn’t alleviate it, at least they’ll know why I’ve turned into someone who will give Jeff Dunham’s curmudgeonly character, Walter, a run for his money.
My baseline bone scan is scheduled for 19 May, a week from tomorrow. I’m not overly worried about it at the moment. Of course, I’m sure there will be more than a twinge of “what if” while waiting for the results.
I just realized that we didn’t schedule a follow-up visit with the urologist to review the results. I’ll have to get that sorted.
Sunday, I popped back into the museum where I worked up until January to see my old colleagues and friends. It was good to get caught up and to hear how things were going since I left.
Of course, they inquired as to how I was doing, and that led to a small dilemma for me. Do I tell them about what’s been transpiring, or not?
I lied and told them that things were just fine with me. As I did, it immediately took me back to the days of being back in the closet and having to pretend to be something I’m not all over again. It wasn’t a good feeling at all.
My intent in going there was to let at least one or two of my closer friends there know what was going on, because, as one fellow blogger recently wrote, “A burden shared, is a burden halved.” (And as therapeutic as venting on this blog has been, it’s always better to have a real shoulder to cry on.)
But after spending a little time with my museum friends, I realized that it wasn’t the appropriate time or place to share what I’ve been going through, so I didn’t.
So far, I’ve only told two of my friends (a husband and wife team) face-to-face, and four others via email. That’s it.
Telling my friends in person was more difficult than I expected. The words hung up in my throat and didn’t want to come out. By saying aloud that I had early indicators that the cancer might be returning, made it real.
I could tell the same thing was happening on Sunday with my museum friends as I got closer to uttering those words—they didn’t want to come out. (Hence, another reason not to say anything.)
I’ve yet to tell my sister and her family that all of this is going on; they’re still reeling from my brother-in-law having had his massive stroke in August. They’re emotionally exhausted right now, and I don’t want to add to that burden until I know something more definitive. (And, yes, I know that they have a right to know at some point and, no, the chances of them reading about this here are pretty slim to nonexistent. Trust me.)
The support that I’ve received from you has been incredible, and I’m truly thankful for it. But right now, I need some additional local support on this roller coaster ride. To get that, at some point, I’m going to have to come out of the “cancer may be returning” closet and have that hard conversation with those closest to me.
[Yes, I know I’m getting waaay ahead of myself, but that’s the way this crazy mind of mine works. I like to be prepared. It’s really, really annoying at times.]
Speaking of closets and hard conversations, here’s an interesting 11-minute video on the very topic.
It’s the day after my appointment with the urologist, and I’ve come to learn how truly amazing is our capacity to experience the full spectrum of emotions simultaneously. Specifically, I felt a strong sense of being at peace today while still being mad at the world.
I know the doctor never explicitly stated that the cancer is coming back, but her concern and her actions tell me that I’ve taken my first steps down that path. Sure, it may take six months, a year, or even longer of traveling to that magical 0.2 ng/ml biochemical recurrence destination, but in my mind, once you start down that path, there’s little you can do to get off it.
Salvage radiation or androgen deprivation therapies may slow the rate at which I progress down the path, but, in my mind, the ultimate destination will be the same. The question is whether it will allow me enough time to die with prostate cancer and not from prostate cancer.
Am I getting ahead of myself? I don’t think so. Something in my gut tells me that this is really happening. And, no, that’s not giving up—it’s just accepting reality. Having a healthy outlook on death and dying came from my mom who, coincidentally, died—or, to use her word, “croaked”—ten years ago tomorrow. (She left my sister and I a note with instructions that started, “When I croak…”)
The sense of peace that I’m feeling comes from having much of the ambiguity removed. Sure, there are plenty of tests ahead that will either confirm that I’m on the path or add doubt as to whether and how fast I’m progressing down the path. And there’s plenty that even the experts can’t agree on concerning the therapies, and that will be maddening. But now I feel as though I have a sense of purpose—something to focus on—and that’s where the peace comes from.
Do I want to be on this path? Hell no. I’m mad as hell that I’m in this situation. But the anger will subside, and then I’ll focus on two things: 1) Living and 2) figuring out the best course of action to slow or stop the progress of this monster.
And if 4, 8, or 12 months from now, I’m proven to be a complete idiot because there was no recurrence, then I’ll take that, too. It certainly won’t be the first time nor will it be the last.
Now, if you’ll excuse me, I have four months of getting really, really smart about salvage therapies, their effectiveness, their risks, and their side effects.
What a difference a good venting session and a couple of days make. I’m back in battery.
Huh?
That’s the old naval gunnery officer in me coming out—the gun’s finished its recoil cycle and is ready to fire again.
Yesterday and today have been much more upbeat and positive, and that’s a good thing. Wallowing in emotions just wasn’t going to hack it.
F*%k cancer. Time to go out and enjoy some San Diego sunshine on this delightful 77° F / 25° C spring day!! (Sorry, the salty sailor in me coming out again.)
My appointment is late Tuesday afternoon, so expect an update later in the evening Tuesday, regardless of the outcome.
Cancer is exhausting.
Ever since getting my PSA results last Friday, I’ve been so emotionally charged that I just reached a point of pure physical exhaustion tonight. But, on a positive note, today was the first day since last Friday where I wasn’t overcome with complete dread, anger, and sadness.
The whole week I’ve been mad at the world for having to even be thinking about the cancer coming back. I cruised along for more than four years thinking, “I got this licked,” with each successive undetectable PSA test, especially as I closed in on the five year mark. And now this. Pissed me off.
Being so angry didn’t bode well for anyone around me, as the smallest little thing would set me off. Being in a job that is almost entirely about relationships with people, it was extraordinarily difficult—and draining—to not allow that anger to come through and get directed at the people I support.
Of course, there was no way to just purge cancer from my thoughts; it was ever-present, especially because I’ve been doing research in advance of my appointment with the urologist on Tuesday. That made it challenging to focus on the tasks at hand at work, too.
Then the sadness of just having to go through this all over again, knowing that this time it will be a more difficult journey than just a snip-snip, your prostate’s gone, sapped any remaining positive energy from me as well.
Lastly, there’s the frustration of not having any immediate, definitive answers as to what in the hell is going on. Yes, I know that I’m getting ahead of myself, but I’m also not naive. Having three consecutive elevated PSA readings tells me something different is going on. In my mind, I’m trying to reconcile the fact that this really is happening, and that I need to be prepared to accept the fact that the cancer may be back one day.
My prediction is that Tuesday with the urologist will go something like this:
Perhaps the best analogy for this week is that I had been driving down the highway on cruise control, bumping my speed up a tad with each successive undetectable PSA test, then—BAM!—out of the blue, I have a blowout. It takes a few moments to assess what happened, reconcile what needs to be done, and then regain control of the situation. After the adrenaline rush subsides, you’re zapped of all your energy.
Right now, I’m somewhere between reconciling and regaining control. I’ll get there.
Crap!!! (I used another four-letter word, but I would like to maintain a sense of decorum about this blog).
That little cancer cloud hanging over my head let loose a giant thunderbolt this week.
My PSA came back at 0.08 ng/ml, double what it was in December (0.04 ng/ml) and more than it was in September (0.05 ng/ml).
Did I say, “Crap!!!” ???
Even though it’s still below of the widely accepted 0.2 ng/ml definition of biochemical recurrence, I better start researching salvage treatments for recurrence because doubling in four months is not a desirable PSA velocity, at least in my pea-sized brain.
Did I say, “Crap!!!” ???
My appointment with the urologist is on 19 April, so I’ll have time to get prepared with tons of questions.
Crap!!!
Scrolling through my Facebook feed, I came across this interesting article, Gentler attack on cancer may mean that we can live with it longer, about taking a less aggressive approach to treating cancer in order to live longer. The theory is that, if you try to kill every cancer cell with a very aggressive initial treatment, any remaining cancer cells become resistant to further treatment and can be more problematic. If you take a slower initial approach to just contain the existing cancer cells, you may be able to extend your life.
I also came across this article, ASCO Endorses Active Surveillance for Prostate Cancer, recommending active surveillance over immediate treatment for those with low-risk prostate cancer (low-risk being defined as a Gleason of 6 or less). There appear to be some common sense reality checks that allow for exceptions to their recommendation as well. It’s an interesting read.
On my own front, I’ve been doing well emotionally knowing that my next PSA test is coming up soon. My appointment with the urologist is on 19 April 2016, but I’ll probably get the blood drawn when I’m scheduled to be in the clinic for another meeting on 6 April (my weight-loss group—81 lbs./36.7 kg lost!). That means I can probably get my results online around the 9th or 10th and, with luck, they’ll still be in the 0.04–0.05 ng/ml range (or less).
Speaking of luck, my streak of bad luck in 2016 continued. On my way home from my new job on my second week there, I was cut off on the highway by some yahoo not paying attention, and I had to stand on the brakes to avoid hitting him. Sadly, the gal behind me didn’t react quickly enough and rear-ended me to the tune of $2,500 USD in damages. <Sigh> Thankfully, insurance is covering the entire cost, as it wasn’t my fault—my deductible was waived. Of course, the guy who caused the accident drove off into the sunset without stopping.
Biology Ahead!
Wow. I haven’t used that little warning symbol in a long, long time, but there is something to report (I meant to put it in my Life After Prostatectomy–60 Months Later post, but forgot).
One of the potential side effects of a prostatectomy is penile shrinkage. I’d say that I had noticed the change, but interestingly, things seem to have returned to pre-surgery size in the last few months. That’s something to discuss with my urologist in April (not that I’m complaining—just to see if it’s common for that to happen, and if it really takes five years for it to happen).
I’ve been surprised by how unfazed I’ve been over my upcoming PSA test next week, the one that will confirm whether or not my post-surgery PSA is actually rising.
I’ve not let it get the better of me in my day-to-day life, which has been remarkably pleasant. That doesn’t mean that I’m not concerned about the results, though. We’ll cross that bridge when we get to it. No sense in spending a ton of energy worrying about the unknown.
I plan on having my blood drawn on Wednesday, but a potential hiccup at the clinic may alter that. The clinic is actually relocating down the block to a larger facility, and the move is supposed to be completed by Monday. With the luck, there won’t be any delay and the lab will be up and running to allow me to take the test as scheduled.
When this rising PSA fiasco began in September, I had the blood drawn on a Wednesday and saw my results online on Saturday. I’m assuming a similar timeline for this go around. I’ll keep you posted.
Oh. Come Tuesday, I’ll be delighted to lose my Movember beard and mustache. Good to highlight awareness, but they’re driving me nuts and it’s time for them to go. (Besides, given its almost pure white color, I don’t want to be confused with a jolly ol’ elf that will be making his rounds in four weeks!)
Dan's Journey through Prostate Cancer 