Tag: Emotions

Month 68 – Waiting for the Next PSA Test

On By DanIn Prostate Cancer, Research, Treatment5 Comments

This will be a short post this month—my brain has been prostate cancer-ed out after the last few months and needs a respite for a few weeks before I buckle in for the roller coaster ride that is the next PSA test.

Speaking of the next PSA test, I’m planning on going in for the blood draw right around 1-3 August 2016. We’ll have to see how my schedule looks that week.

My urologist has authorized me to get the blood draw as of 1 July, so I could go in tomorrow if I really wanted to, but I’m going to do my best to stick to the first week of August to preserve the even spacing of the last three tests—pretty close to exactly four months apart ( 3 December–6 April; 6 April–3 August).

If I lose my willpower and go early, I’ll let you know.

This week also offered up some major news on the prostate cancer front with a shift towards genetic testing to help determine how to best treat prostate cancer. You can read more about it in this Washington Post article, Leading researchers recommend major change in prostate cancer treatment.

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 1,988 – 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.

Day 1,982 – Exhausted

On By DanIn Emotional Aspects, Recurrence6 Comments

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:

  • Yes, this is an interesting development having a third elevated PSA test higher than the others.
  • It warrants concern, but not panic. (Too late.)
  • We’ll want to do another PSA test in 2-4 months.

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.

Day 1,844 – Unfazed & Unshaven

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence2 Comments

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!)

Five Years

On By DanIn Prostate Cancer2 Comments

It was five years ago today that my biopsy results were delivered: It’s prostate cancer.

Five years later, I’m back in the waiting-and-wondering mode as I wait as patiently as I can for my next PSA test to see if my September PSA reading of 0.05 ng/ml was a fluke (readings for the previous four years always came back undetectable), or if it’s the beginning of an upward trend and a trip to recurrence.

I plan to have my blood drawn on 2 December and should be able to get my results online 3-5 business days later. My appointment with my urologist is on 15 December.

On the whole, I’ve been doing pretty well emotionally. I’ve put this onto the back burner for now, but I’m finding that, as I get closer to the blood draw (it’s just three weeks away), I’m becoming a tad more moody. There are days where I’m doing quite well, and there are days where I simply think, “I really don’t want to go through this again.”  In the interim, I have been reading about recurrence and treatment options to get myself a little smarter about it all. With luck, I won’t have to put that research to use.

Let’s keep our fingers crossed…

On the general health front, I spent a good chunk of October fighting a cold. It went on for over 4 weeks and just wouldn’t relent. (Some coworkers suffered the same fate, and my doctor confirmed that it was just a cold–no pneumonia or bronchitis–and I just had to ride it out.)

With all of the coughing, I returned to my incontinence pads as insurance, and they were definitely needed some days. I will say, however, I’ve continued my weight loss program, and being 67 lbs. /30 kg lighter, has really helped decrease the severity of the stress incontinence.  It would have been far worse had I had this cold a year ago.

I attended my first prostate cancer support group last night at the San Diego LGBT Center. It’s something I’ve been meaning to do since September, but life kept throwing me curve balls. Even five years into this adventure, there definitely was value in hearing perspectives of other guys. I’m glad I attended.

Finally, you would have thought that after five years of blogging, I’d be better connected in the blogging community. Let’s just say that I’m apparently a slow learner and it’s only been in the last few months that I’ve discovered how to open doors to other bloggers.

A few weeks ago, I came across Mansacked: A Blog About Prostate Cancer written by a gentleman five months into his experience with prostate cancer.  He, too, has been very open in his discussion which, to me, is very important. Check it out.