Day 2,770 – In a Weird Place

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Every weekday, I pass by here on the way to or from my office, getting a not-so-subtle reminder, “Hey! You need to make a decision, yahoo!” A few weeks ago, that nagging voice carried a bit of weight. Today, not so much.

In fact, I’ve taken the ostrich approach over the last few weeks—burying my head deep in the sand, ignoring anything related to The Decision. I haven’t actively researched diddly-squat and that’s been liberating. I know that’s not a productive approach to the situation at hand, but I’m okay with that for now.

The best explanation that I have for being in this weird state of indifference and inaction is a simple one: I’m mentally exhausted from constantly thinking about this. I just needed to shut it down for a while.

I know I’ll have to get back in the groove someday (after the 1 August PSA test?), but for now, I’m enjoying the denial and the break.

Day 2,745 – Conversation with the R.O.

When I was in 7th grade, I had to give a presentation on my science project, an erupting volcano, and I was so anxious about the presentation that I became physically ill and erupted myself. Not pretty. While I didn’t get physically ill today, the feeling was almost the same as I waited to see the radiation oncologist. It’s silly, I know. But it was very real.

In a nutshell, his recommendation was to start salvage radiation therapy.

The R.O. is a Navy captain medical officer, and we spent nearly forty-five minutes going over my case (which I truly appreciated). He took control of the conversation from the outset, explaining the options and consequences of each. I could tell that he had given this little presentation once or twice before. Once we got through that, we did have a real conversation. Some key points:

  • He disagreed with the notion that the increasing PSA is from residual benign prostate tissue left behind.
  • He was confident that the cancer would be in the prostate bed based on my numbers and statistics.
  • He talked about the differing definitions of biochemical recurrence, saying that the American Urological Association (AUA) and American Society for Radiation Oncology (ASTRO) use the 0.2 ng/ml threshold, but the National Comprehensive Cancer Network (NCCN) defines recurrence as a detectable PSA with two consecutive increases. My case meets the NCCN definition.
  • Continued surveillance is a viable option for me given my numbers and PSA doubling time.
  • We talked about the short and long-term side effects of radiation therapy: urinary control, sexual function and bowel control. His estimate the probability of long-term quality of life-impacting side effects in any of the three areas to be in the “single digits.”
  • He reminded me of selection bias when talking to other patients or bloggers about their side effect experiences. Yes, their experiences are very real, but for each person in an online forum, there are many others outside the forum who are leading productive, acceptable lives.
  • If we were to do salvage radiation therapy now with my PSA under 0.2 ng/ml, he put the probability of me having no evidence of disease five years from now at seventy-five percent. If we wait until my PSA is above 0.2 ng/ml, that number decreases.
  • Newer scanning technologies weren’t likely to pick up anything at my current PSA levels, yet he was open to the idea of them if it gave me peace of mind.
  • With my numbers, there is no reason to radiate the pelvic lymph nodes or use androgen deprivation therapy (ADT).
  • He was open to waiting until the August PSA results to see what they revealed before making a decision.

It was a good conversation, but I’m sorry to say that I don’t know that there was a lot of new information for me there that would tip the scale either way. The doctor wasn’t pushy in one direction or the other, saying that it was equally reasonable for me to continue surveillance or for me to begin salvage radiation therapy. The choice is mine. About the only thing he was adamant about was not starting ADT, and I’m in perfect agreement with him on that.

I did learn one really interesting thing, however. The reason that the VA Medical Center referred me to Naval Medical Center San Diego has to do with geology. Apparently VA Medical Center San Diego (La Jolla) was built sufficiently close to a geological fault line that they couldn’t build a radiation “bunker” that would be safe in the event of an earthquake.

What’s next for me? A ton of thinking, reflecting, and reevaluating.

Enough for now. I’m spent.

Month 89 – Moving Forward

I wasn’t expecting that.

You would have thought that, with me confidently predicting that my latest PSA number would climb, I would have been relatively okay after getting the results Thursday night. Not so. Friday, I plunged into a deep funk, and my ability to concentrate at work dropped to a 2 or 3 on a scale of 10. Not good.

To combat the funk Saturday, I distracted myself by going down a relatively mindless rabbit hole on YouTube. (I know, not my proudest moment, but it worked.) One of the videos that I watch was from a young landscape photographer, Dave Morrow, that was entitled, How Quitting Social Media Changed My Life & Photography. That piqued my interest, so I spent 11 minutes watching it (video below).

As a bit of background, I was really opposed to joining Facebook and other social media years ago. I successfully resisted joining despite pressure from family and friends. In fact, this very blog arose from my disdain for Facebook yet wanting to be able to keep everyone informed about my situation.

But when I started working at the museum, we had a Facebook page for our volunteers and, as volunteer coordinator, I thought it was important to understand how to use it. I set up my own Facebook account as a playground to learn. That was four years ago, and I have to admit that I’ve been sucked into the Facebook vortex over time, spending more hours on it than I should.

The key takeaway for me in Dave’s video was when he said that he took all of the time and energy that he put into social media and devoted it to the things he enjoys and is passionate about instead. That was one of those “Ah-ha!” moments that we all knew about but had to relearn.

Regular readers of this blog will know that one of my favorite things to do is throw my camera in my car and drive. That’s precisely what I did on Sunday and, like the YouTube marathon, it, too, chased away my funk as I took a one and a half mile midday hike in the Anza-Borrego Desert State Park. (Perhaps not the wisest idea in the 90° F / 32° C heat.)

Tonight, rather than heading directly home from the office and hopping on my tablet to get caught up on all the social media postings, I opted to take an hour-long stroll up and down the beach, trousers rolled up to the knees, barefoot, ankle-deep in the incoming surf. It was delightful. (Note to self: Throw a pair of shorts in the trunk so I don’t look so geeky in trousers on the beach. Just a thought!)

I haven’t been on social media since Saturday—it’s been quite refreshing—and I’ve followed Dave’s advice and used that time for more enjoyable endeavors. Yes, it’s been a bit of a challenge not to look on Facebook, but I’ve resisted so far. Will I completely delete my accounts? Time will tell. There has been some advantage in using social media to connect with old friends, to remain connected with those half a continent away, and to even connect with fellow prostate cancer patients.

Dave’s insights were more from a developing and growing his business perspective, but obviously, they could be applied in a personal setting as well. Disconnecting from social media allows me the time to move forward doing things that I enjoy—walking on the beach, hiking in the desert, or snapping a photo or two. Each of those help combat the emotional funk.

Who would have thought that a YouTube video about managing a photography business would have reminded us that we need to eliminate those things that don’t add value or bring joy to our lives, and focus on those things that do?

I wasn’t expecting that.

Day 2,663 – Research Induced Stress

Finally! I’m so glad this past week is over. It was emotionally one of the roughest weeks I’ve had in a long time.

It all started last weekend, which was a three day holiday weekend for those of us here in the U.S. Because I want to be as prepared as possible going into my April appointment with my doctor, I spent two of the three days continuing to research all sorts of things that will help me have a better informed discussion.

I posted a question in an online support group under the heading, “Recurrent Prostate Cancer and Salvage Radiation Therapy.” What followed were some very thoughtful sharing of stories from other patients who had been down that path already. But there was also a very robust discussion between a retired physician, himself a prostate cancer patient, and a long-time prostate cancer patient advocate. Both had some great insights—sometimes conflicting—and both connected me to other resources.

I’ll spare the full-blown details, but what stressed me out last weekend—and lasted well into the week—was the notion that, despite the plethora of information out there about recurrent prostate cancer and treatment options, too much of it is conflicting or inconclusive, and there’s no clear answer for me.

When you know that you’re going to have to make a decision that could impact the length of your life and the quality of your time remaining, not having clear choices is a problem. And once you choose your path, there may be no going back. You may have to live with permanent, life-altering side effects as a result of that choice. The risks may be low, but they’re real.

Cancer, treatment options, side effects, and imaging technologies were pretty much all that I thought about all week long, and it took its toll emotionally and physically. I couldn’t shake the thoughts from my head, no matter how hard I tried. In my role as a volunteer manager, I really needed to be as upbeat and positive as I can. I tried my best last week, but it was exhausting doing so.

I know that much of this stress is self-inflicted. If I’d just step away from Google and stop researching, then this may not be so bad. But that’s not how I’m wired. I will say, however, if my doctor’s appointment was tomorrow, I’d feel pretty comfortable going into it with the knowledge that I’ve amassed so far.

I also know that there are no guarantees no matter which path I choose. I just want to choose wisely.

 

Month 87 – Adapting and Researching

Ever since my December meeting with my doctor to review the latest uptick in my PSA reading to 0.10 ng/ml where he told me I need to begin to think about salvage radiation therapy, it’s as though the clock has been turned back to when I was first diagnosed. That makes this all very real once again. We’re getting closer to having to make a decision to move from monitoring to action.

My emotions have been all over the place—from mad as hell at the world to ready to bawl at the drop of a hat—and I felt compelled to research as much as I could, as fast as I could even though my next PSA and doctor’s appointments aren’t until April. On the good news front, the peaks and valleys on the emotional roller coaster have diminished some over the last two months. They’re still there, but not as bad as they initially were.

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San Diego at Night

I’ve been spending a good amount of time (perhaps too much) researching and hanging out in the advanced prostate cancer section of various online support groups. That’s been both helpful and a tad frightening. It’s been helpful because I’m new(er) to the advanced prostate cancer discussion, and I’ve been learning more about the different treatment options, protocols, and latest research. It’s been frightening because reading the first-hand stories—while valuable and necessary—has stoked my fears of the treatment side effects.

I did come across one thing in my research that I’ll definitely discuss with my doctor in April.

We know biochemical recurrence after prostatectomy has been widely defined at 0.2 ng/ml for quite some time, yet more and more research is indicating that salvage therapy should begin early in order to have the best chance of success. Some suggest starting SRT before hitting the 0.2 ng/ml threshold.

Of course, as we all know in the field of prostate cancer, nothing is clear-cut. You can easily find research that has conflicting recommendations.

I came across Stephen J. Freedland’s 2005 study (co-authored by Alan Partin and Patrick Walsh—heavy hitters in the prostate cancer world from Johns Hopkins) that shows I may not have to do anything other than continue to be monitored given my status (PSA = 7, PSADT > 15 months, time to recurrence > 3 years). In fact, he writes:

“It is amazing to me that for a man who has all the low-risk features – if his PSA doubling time is greater than 15 months, his Gleason score is below 8, his PSA comes back after three years – his odds of being alive 15 years later are 94 percent.” These men do not need treatment, he adds. “If we know that 94 percent of these men are alive and well 15 years after surgery with no further treatment, anything we do to treat them is unlikely to improve on that, and probably would only affect the quality of life.”

That’s quite encouraging for someone fearful of side effects and loss of quality of life. Combine that with the Pound study done in 1999 that said it takes on average eight years to metastasis after BCR and, on average, another five years to death after metastasis without any additional treatment, and you’re building a stronger case for doing nothing other than continued monitoring for those of us who are averse to treatment side effects. At least in my mind at the moment.

You can read an abbreviated summary of the Freedland study in the Johns Hopkins newsletter, Prostate Cancer Discovery, here, and the full study as published in JAMA here.

I’m slowly adapting to this new path that I’m on, and I’ll work to find the right balance to stay away from the online support groups and the Google machine to maintain a sense of sanity. I fear, however, that controlling the emotional roller coaster is going to be far more challenging from this point forward (steer clear or pass the tissues). Just a hunch.


One related footnote. I’ve not yet met with a radiation oncologist since my PSA started going up in September 2015. If it stays the same or goes up again in April, I’ll ask the urologist for the referral just to start the conversation and learn more from his/her perspective.

Three Weeks

It was an emotionally draining day at work today.

We provide support to patients and their families at a local hospital, and a case worker came to our office looking for activities for a patient in his early twenties and his parents to do over the weekend. Normally, that’s a common request. However, the case worker explained that the patient had only a few weeks left on this planet, and the doctor was urging him and his parents to get out of the hospital and do something—anything—with their remaining time together.

I was crushed.

I’m pretty good about compartmentalizing patient stories and not letting them affect me too much. Not this time. It hit too close to home, at least conceptually. Of course, the young age of the patient added to my reaction as well.

If your doctor told you to go out and make the most of your last three weeks on Earth, what would you do?

Talk about a reality check on your own mortality.

Month 86 – Struggling

First things, first. I’m struggling to thaw out after spending five days in frigid (-4° F / -20° C) Chicago with my sister and her family this past weekend. You may well be asking, “Who in their right mind flies from San Diego to Chicago in January?!?” Sadly, that would be me.

I contemplated returning for Christmas but had sticker shock on the cost of the airfare, so I opted to return for my birthday last week at a quarter of the cost. This birthday was one of those annoying milestone birthdays—the 30th anniversary of my 30th birthday—and that definitely warranted an appropriate celebration. Of course, anyone in our situation knows that any birthday you’re around to celebrate is a good birthday.

But what I’m really struggling with is this whole notion of recurrence and what to do about it.

I’d like to think that throughout my life I’ve been a generally optimistic, my glass is half full kind of guy, but one with a healthy dose of reality attached to that optimism. Hope for the best, plan for the worst, and recognize the inevitable. I understand the value of a positive attitude, however, I’m increasingly finding that I have a diminishing tolerance of false optimism. “You got this. You’re going to kick cancer’s ass!” Really? Are you sure about that? How do you know? And at what cost? The $109,989.11 invested in my prostatectomy (the real number, mostly paid by the insurance company) doesn’t seem to be paying off.

The costs that I’m talking about aren’t just financial, either. There are emotional and physical costs as well.

With salvage radiation therapy (SRT)—the only option that still has a curative potential—there’s the risk of increased incontinence, loss of sexual function, bowel control issues, and fatigue during the treatments. Chatting with other patients in online forums or through their own blogs, some of these issues don’t manifest themselves until well after the SRT treatments end. And all of this for a 30%-55% chance of having no evidence of disease five or six years after SRT ends.

With androgen deprivation therapy (ADT) (hormone therapy), there’s the loss of libido and sexual function, mood swings impacting relationships, hot flashes, loss of muscle mass, increased risk of osteoporosis, and significant depression. Of course, ADT is not curative, so you get to suffer through those substantial side effects for a longer period because ADT prolongs your life.

It’s easy to get excited when you see your PSA plummet after starting ADT, as it impacts those androgen-dependent cancer cells. But guess what? There are also androgen-independent cells floating around that the ADT won’t impact at all, and it’s those cells that will start driving the PSA back up again and that will ultimately kick your ass.

Being a data-driven numbers guy, I’m also struggling with how to quantify these potential impacts on quality of life.

When you’re in an online or even in-person support group, you have to remember that there’s a self-selection bias taking place that will skew your perspective to the bad. Think about it. Almost everyone who’s in the group is there because they’re at some stage of dealing with this disease and having issues that need answers. Who you don’t see are those patients who are outside of the group who have success stories in dealing with their cancer and have simply stepped away from that chapter of their life.

For me, I want to know the ratio of who’s in the group versus those who are outside the group. Is it like an iceberg with 10% of the patients in the group being the visible ones and 90% of the success stories out of sight? Is it 50-50? 30-70? 60-40? Knowing the answer to that helps me understand the risks better.

I’ve stumbled across a few studies that talk about the likelihood of potential side effects from SRT but I would like to see more. The risks do seem to be relatively low from what I recall and from what my doctor is telling me, but forgive me if I’m skittish about accepting even low risk given where I’m at. (My surgeon forewarned me that there was a 20% chance the cancer would return; I guess I’m just not feeling all that lucky at the moment given my track record.)

Similarly, with ADT, it seems that most everyone suffers some form of side effects, but each person is impacted differently. Again, the numbers guy in me would love to see some sort of study that says, “While on ADT, my quality of life has been reduced by __% in each of the following areas…” I’ve heard patients say that they are “just a shell of the person I was once” or that the ADT has them remaining in bed 20 hours a day. Of course, there are others who seem to have only mild side effects with negligible impact on their daily lives. What’s the distribution like between those two extremes? Knowing the answer to that would be very helpful in decision making.

Given all that, I’m struggling with one more thing, and it may scare or even offend some readers.

“You’ve got plenty to live for. You need to fight. You need to be strong. You need to be a warrior and defeat this disease,”—all things that I’ve heard along the way. There’s this pervasive attitude that other patients, family members, and the healthcare system have that we must do everything we can to go on living for as long as we can at all costs.

Why?

Please don’t panic and think that I’m ready to check out tomorrow. I’m not. There is plenty to live for, and that is precisely why I ask the question.

Is being a shell of yourself and staying in bed 20 hours a day really living, or is it merely existing? Would you rather live a more full, active life for 8-10 years, or merely exist for 20 years?

What about the impact on your significant other and those closest to you? Yes, they’ll be by your side every step of the way. Do you think they would rather remember your last years as being present and engaged for 8-10 years, or withdrawn, moody, depressed, and barely capable of functioning for 20 years?

What about the financial impact on your family? Would you rather take a few bucket list trips with your significant other and family in your remaining 8-10 years, or would you rather take out a second mortgage on your home to pay for the drugs and latest technology tests that will keep you existing for 20 years, placing a financial burden on those who survive you?

Before you send me all sorts of hate mail, I know those are extreme examples and that there are many shades of gray between the extremes, but, in the absence of studies or data that mitigate those examples, that’s what’s rattling around inside my analytical, pragmatic mind at the moment—right or wrong. It’s just the way I’m wired. The good news is that I have time to find those studies and data that hopefully will give me the information I feel I need to make decisions going forward.

It takes strength to go through the radiation, ADT, and chemotherapy if that’s the path that you choose. It also, however, takes strength to say, “No. I’d rather live without those debilitating side effects for as long as I can, even if it means it will be for a shorter period of time.”

Thirteen years ago, my mother was diagnosed with mesothelioma, the incurable cancer associated with asbestos exposure. She was given the option to participate in some clinical trials that may have extended her life three to twelve months, but she refused. “I don’t want to be someone’s pin cushion when the end result will be the same.” She wanted to retain control over her life for as long as she could, and she did so to the best of her ability. Sadly, though, it was only a matter of months before she died, but she went out on her own terms.

That’s how you kick cancer’s ass.

I would like to think that I’ll be able to do the same.


Just a note. Because I knew I would be traveling, I wrote this post over a week ago. While I was in Chicago, a fellow prostate cancer patient, Mark Bradford, replied to a question in an online support group, and it’s complementary to the topic of this post. The question posed was, “At what point do you get tired of fighting?” He replied:

I dislike framing this as a fight. You have a disease, and you seek treatment for [it] till you decide to stop. Being in treatment is not fighting and stopping treatment is not giving up. I was inoperable from the beginning and stage 4 soon after. My outcome was certain, so my priority was quality of life over quantity. I did HT [hormone therapy] until it stopped working, and cannabis oil throughout. I refused chemo as it would not cure me or significantly extend my life. Don’t let anyone say you’re giving up if you decide it’s time to stop treatment. I could not afford alternatives, so my choices were limited. If you have the means, do whatever seems right to you. But accepting reality is not giving up.

I don’t think that I could agree more with Mark’s comment about framing this as a fight and about being in treatment or stopping treatment.

Mark is nearing the end of his life, and you can read his very poignant blog, God’s 2 by 4: Mark Bradford’s Cancer Journal.

Another patient, Dan Cole, answered simply and succinctly: “Live the life you choose to live. That is winning the fight.”

I know I’m getting way ahead of where I should be given my current status but, if nothing else, this disease certainly causes you to prematurely contemplate your own mortality.

Day 2,459 – PSA Results

My silly little trend line that I slapped on my PSA tracking chart wasn’t so silly after all. It was dead on target. My latest PSA: 0.09 ng/ml.

Crap. (Or some other four-letter expletive.)

Even though I expected this (thanks, trend line), I’m still absorbing the significance of yet another increase in my PSA.

In a way, I’m glad to see the results that I have. Certainly not because I want the cancer to come back, but because it removes some of the doubt caused by the yo-yo readings last year. Now I can come to terms with the likelihood that I really am headed down the recurrence path, and I can focus on what’s ahead.

So those are my thoughts in the first 30 minutes since seeing the results online. I’m sure there will be more thoughts to follow. I have to admit that I’m unusually unemotional about this at the moment. That’s good.

I’m sure I’ll have more thoughts to share once this sinks in.

 

 

Day 2,343–A Struggle

I’m surprised by how much getting my PSA results 30 hours ago affected me yesterday and today. It’s been a real struggle.

Anger. That’s the word of the last 24 hours. I just want to scream, “Would you make up your fucking mind already?!?! Either come back and let’s battle this cancer shit head-on, or get the fuck out of my life once and for all!!” (Told you I’m pissed.) It’s the uncertainty that comes with each test result that’s getting to me. And the fact that this will happen every four months for the foreseeable future is growing really tiresome.

Logic tells the data-driven part of me that I’m okay—that I’m still considered to be cancer-free for now. It’s probably because I am so data-driven that I’m getting so angered and frustrated. Cancer doesn’t always follow a logical path; it doesn’t always fit neatly into cells in a spreadsheet. I need be better at accepting that fact. (You would have thought that I would have learned this after 6+ years of dealing with this.)

Cancer sucks.


Sorry if I offended with my language, but when I started this blog, it was intended to be a raw sharing of thoughts and emotions, and it’s something that I needed to do today, otherwise my head would explode. Really.

And, no, I’m not wishing for the cancer to come back. I’m grateful that I’m still here and able to whine about it. Truly. I guess frayed nerves, anger, and frustration are small prices to pay for longevity.

 

 

Day 2,210 – PSA Test Time

Time to buckle up for the next ride on the PSAnxiety roller coaster. I had my blood drawn this morning for my next PSA test. Now we wait, typically three days before seeing the results online.

On the good news front, I’ve been completely unemotional leading up to this PSA test. I’m not sure why, but it’s been a refreshing change from the last PSA tests.

My appointment with my doctor is on 29 December, and I’ll post my results as soon as I have them (and geekily update my spiffy little PSA chart).