Category: Prostate Cancer

Day 2,012 – Living Defined

On By DanIn Emotional Aspects, Prostate CancerLeave a comment

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.

north-america-map
My road trips (in blue) through all 50 states and 8 Canadian provinces (plus a run down Baja California, Mexico).

Month 66 – Cancer Survivorship

On By DanIn Emotional Aspects, Prostate Cancer5 Comments

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.

Day 1,995 – Hard Conversations

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence3 Comments

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.

Day 1,990 – Quick Update

On By DanIn Prostate Cancer, Recurrence10 Comments

Just a quick update on a Friday afternoon…

Emotionally, doing quite well, although I still have the occasional fit of being pissed at this whole situation. Otherwise, pretty much back to my normal day-in, day-out routine.

I’ve also been doing a bit of reading on the concept of recurrence and treatments. Not obsessively, and not letting it add fuel to any emotional fire. Absorbing it in small doses with an open mind. If anyone has any compelling article, book, or other source on the topic, please feel free to share.

I received confirmation today that the next step in the process—the bone scan—is scheduled for 19 May 2016. I’m fine with that.

 

Day 1,988 – The Day After

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence9 Comments

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.

Day 1,987 – Urologist Meeting

On By DanIn Prostate Cancer2 Comments

I’m sitting in the waiting area waiting for my appointment with the doctor as I write this.

This morning, I was a real grump and didn’t suffer foolish things with any grace. And there were more than the average number of foolish things happening today.

As I walked out to the car, the closer I got to it, the less I wanted to get in it. Perhaps I viewed it as the beginning of the drive to the gallows.  (Yes, the mind goes to strange destinations under these circumstances.)

I’ve definitely come to terms with the notion that more tests will be in my future. And I thought I had come to terms with the notion that the cancer is coming back. But perhaps not. Until the doctor actually utters those words, “the cancer is coming back/back,” there’s always a glimmer of hope.

So once again, I wait.

On leaving the doctor’s office, I came to the conclusion that prostate cancer is the medical equivalent of Chinese water torture.

Just as I predicted, another PSA test in four months.

The doctor was concerned about the increase in my PSA, but reminded me that it’s still a low number. She also agreed that the change in test methodology had little to do with the increase. One variable eliminated.

She did another DRE just to be safe and didn’t feel anything that gave her concern.

We did talk about treatment options given where we think this is heading. Her immediate response was hormone therapy would be her first treatment choice, and she wasn’t at all keen on radiation because of its long-term side effect potential. That doesn’t mean she’d rule out radiation if it was something that I was really interested in pursuing.

We talked at some length about the conflicting literature on both radiation and hormone therapy, and she, too, agreed it can be confusing and maddening, even for urologists.

We talked about the timing of any potential treatment and her response was, “I don’t know,” mainly because we don’t have enough information to make a decision yet. The good thing was that she felt comfortable letting things go for another four months, and so do I. We need to better understand what’s happening before embarking on any treatment.  She said some patients demand action after the first signs of a PSA increase. That’s not me.

The one last thing that we talked about and agreed on was the value of a baseline bone scan, so she put in an order to have one done. I just have to wait for the call to schedule it.

She never explicitly said, “the cancer is coming back,” but we’re sure behaving as though it is.

So bottom line, we establish a baseline bone scan, wait four months, and let the next PSA determine our next steps. She said to be concerned, but not to panic. Too late.

Drip……..

Drip……..

Drip……..

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Day 1,984 – Back in Battery

On By DanIn Emotional Aspects, Prostate Cancer4 Comments

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.

Month 65 – PSA Debate

On By DanIn Prostate Cancer, Recurrence5 Comments

Well, with the jump in my PSA to 0.08 ng/ml that I reported a few days ago, I’ve been poring over some literature on the debate between the standard PSA test that’s been used for years and the newer ultrasensitve PSA test (which I’ll abbreviate uPSA) that my provider switched to in March 2015. Let’s review:

  • In January 2015 I had my last undetectable reading (<0.03 ng/ml) using the standard PSA assay.
  • My provider switched to the uPSA assay in March 2015.
  • My September 2015 uPSA reading came back at 0.05 ng/ml, sending me into full panic mode. Given the accuracy of the standard PSA test of +/- 0.03 ng/ml, it, too, should have been able to pick up the 0.05 ng/ml reading in September if it had been used.
  • We retested in December 2015 and my uPSA was 0.04 ng/ml. I would attribute the change from 0.05 to 0.04 to the daily variations that so many talk about and consider that to be insignificant. Still, the standard PSA test could have picked up the 0.04 reading had it been used.
  • And now in April 2016, my uPSA was 0.08 ng/ml.

Those against using the uPSA argue that we’re simply measuring noise and that anything under 0.1 ng/ml should not be used as a decision point to start salvage therapy. They also call into question the accuracy of PSA doubling times using the uPSA test given that it may be measuring more noise than actual changes.

Those embracing the new uPSA test argue that initial, small-scale studies show that uPSA can be a predictor of recurrence with readings as low as 0.03 ng/ml, and that it allows for earlier intervention with salvage therapy. More large-scale research is needed to confirm these early findings.

Some of the literature written against the use of uPSA goes back to 2000. Technology advances in sixteen years, and that would be my question to those opposed to the uPSA. At one point in time, I’m sure that doctors and scientists scoffed at the standard PSA test as being a newfangled, meaningless test that wouldn’t provide doctors or patients with actionable information, but it became widely accepted.

All I know and care about as a layperson is that there is upward movement on my PSA when there had been no movement for four years. Even if it’s just noise, 0.08 is getting awfully close to 0.1 and is halfway to 0.2—and it took just seven months for this to happen. That scares the crap out of me.

And, if I am destined to go down this path of recurrence, don’t even get me started on the whole conflicting and confusing guidance on salvage radiation and hormone therapy! I’ll save those discussions for future posts.

When you’re dealing with cancer, you really don’t want to wish for days to pass quickly, except when you’re waiting for test results and doctor appointments. April 19th can’t come quickly enough right now.

Day 1,977 – PSA Results

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence9 Comments

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!!!

PSA Trend