Tag: Cancer Recurrence

Day 2,093 – The Results

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence13 Comments

PSA Trend 20160803The results are in: 0.05 ng/ml.

I simultaneously breathed a humongous sigh of relief and got pissed off. “Will you make up your freakin’ mind already!?!?” Yes, I’m elated that my PSA actually came down from 0.08 to 0.05, but I’m pissed that this raises more questions than it will answer, and that I’m going to have to keep riding this wild roller coaster for the foreseeable future.

This round was particularly tough, emotionally. I usually never get worked up in advance of the blood draw but, before heading off to the clinic Monday morning, I was so nervous that I ate one spoonful of yogurt and decided that, if I continued, I’d be seeing that yogurt again going in the opposite direction.

When I finally saw that the results had been uploaded to my provider’s website tonight, my hand on the mouse was shaking and I truly didn’t want to click on the link to get the news. Not good. (By the way, I learned that my provider only uploads the data once a day, around midnight Eastern Time. That sucks.)

It will be interesting to see what the urologist has to say on 23 August. I’m sure part of it will be, “Let’s retest in December.” Yippee. I’m still quite concerned that I have a detectable PSA (albeit a low value) where I didn’t have before. What’s up with that?

Well, I’m spent. It’s time to call it a night. Thanks to everyone for your kind words, thoughts, and prayers.

Day 2,091 – Off for the Blood Draw

On By DanIn Prostate Cancer, Recurrence8 Comments

So I’m off to get my blood drawn for the next PSA test. (Those 4 months went by faster than I expected.)

Anyone want to get a pool going on what the results will be? (Hey, you got to have some fun with this crap, right??) My money is on somewhere between 0.95 ng/ml and 0.12 ng/ml. It was 0.08 ng/ml in April. Of course, if it doubles like it did from December to April, that would put it at a scary 0.16 ng/ml.

My real desire is for it to be 0.08 or less, but in my mind, I’ve been preparing for it to be in that 0.95–0.12 range. Expect the worst; hope for the best; deal with the facts once they’re known.

I’ll keep you posted as I log into my health account every hour on the hour for the next three days searching for the result. The appointment with the urologist to go over the results and potential next steps is on 23 August.

Life After Radical Prostatectomy: 66 Months Later

On By DanIn Life After Prostatectomy, Prostate Cancer4 Comments

So it’s been 66 months since my radical prostatectomy. How am I doing?

Honestly? Scared. Afraid of the cancer coming back.

Status

Since my 60-month update in January, we learned that my PSA doubled from what it was in December 2015: 0.04 ng/ml to now 0.08 ng/ml in April 2016. That’s still below the recurrence threshold of 0.2 ng/ml, but obviously moving in the wrong direction. In four weeks, I’ll go for another PSA test and we’ll just have to wait and see what happens with it.

Emotions

Yep. There’s been plenty of emotions in the last six months.

When I saw the PSA at 0.08 in early April, it was as though I was knocked off a horse, fell to the ground, and had the wind completely knocked out of me. Dazed, confused, and not even sure that I wanted to try and get up. It took until early June before my emotional response subsided and I got back into a more normal mindset.

Incontinence

I continued with my weight loss program (90 lbs. / 40.8 kg), and that has certainly helped with my incontinence. Very rarely do I have any leakage at this point.

Sexual Function

I continue to do so-so in the ED department. Remember, I have only one nerve bundle remaining, but I can get an 80%–90% erection most of the time. Some days are better; others are worse.

I do find that my libido is still there, and there are times through the day where I can feel things stirring down below. Not enough to obtain a natural erection—those days are gone—but enough that with a little stimulation, it would be much easier to achieve an erection.

Summary

Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with elevated and apparently increasing PSA readings over the last 10 months, what’s in my future is uncertain. (With the exception of two certainties: 1) An unending series of PSA tests ahead and 2) the thought of cancer ever-present in my mind.)

Month 67 – Back to “Normal”

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence1 Comment

What a two months it’s been.

I’m finally back into a more normal routine after getting knocked off my horse with my PSA increasing to 0.08 ng/ml in April. The raw emotions have subsided and have been replaced with a constant, low-grade concern as I wait for my next PSA test.

One ironic thing that won’t let me completely purge the notion of cancer from my mind is the fact that my office is in a hospital and, every morning on the way to my office, I walk down a long corridor that leads directly to the “Radiation/Oncology” suite. And every day, I’m reminded that radiation may be in my future.

The urologist set my next appointment for 23 August, but she put the blood draw order into the system for any time after 1 July. I won’t go that early.

The engineer in me wants to make sure that the PSA tests are evenly spaced for easier analysis (geek, I know). The last two tests were almost exactly 4 months apart (3 December 2015 & 6 April 2016), so I plan on going in for the blood draw on or about 3 August to keep things consistent. It might make calculating PSA doubling times easier.

Just as I was putting the finishing touches on this post, I came across this article: Is standardization of the PSA cut point for biochemical recurrence after surgery a good idea?

Yet another study offering conflicting and confusing guidance. <sigh>

When you introduce cancer into your vocabulary, it’s impossible not to think about the end of life at the same time. Sure, none of us want to jump the gun and rush things, but it’s a natural extension of the word cancer.

My father died peacefully in his sleep 19 years ago next week. My mother, on the other hand, went through a grueling end ten years ago as mesothelioma and emphysema took away her ability to breathe.

When it comes our time to go, most of us would opt to die as my father did—quietly and quickly. Sure, it was hell on those of us who remained behind because no one ever expected it to happen; he was just 69 years old. For him, however, there was no extended suffering or pain.

The California End of Life Option Act went into effect this week, and I’m thankful that I now live in a state where I can have a say in how my life ends if this cancer thing ultimately gets the better of me.

Yes, I’m getting waaaaaay ahead of myself. The only question is whether more courage is required to make that end-of-life decision or to suffer through cancer running its natural course.

Mom wasn’t afraid of dying, but her biggest fear was that of suffering at the end. Her fears came true. I know she would have jumped at the chance to make her own determination on how to avoid that suffering if the option was available to her.

Again, I hope that I don’t have to worry about this for a very, very long time. I’ll settle on worrying about the next PSA test results for now.

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 1,984 – 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.