Marking a Passing

It’s funny in a world of 7+ billion people how a common theme can bring a small group of us together through blogs. Unfortunately, in our case, it’s prostate cancer that has united us.

Not long after I started this blog, a gentleman named Phil from Montreal, Canada (at the time) and I started corresponding, comparing notes as we do.  We met in person when he wintered over in Palm Springs, just a few hours from my house; and he spent a few days visiting with me on a subsequent trip to San Diego.

Phil had also befriended Jim, the author of the blog, Rant from the Suburbs. I’ve been following Jim’s story for quite some time as well. Phil and Jim formed a strong connection, communicating with each other daily for years according to Phil.

Sunday morning, I received the following email from Phil:

My friend, Jim, in England passed away yesterday. The cancer just overwhelmed him in the last few weeks.

I never met Jim beyond liking or commenting on each other’s posts, but the news hit me harder than I expected it would.

I was reluctant to post this because I didn’t feel it was my place to do so, but Phil encouraged me to share it with those in our little blogging community. He wasn’t sure that Jim’s family would post anything on his blog, so you may not have learned of his passing if your only connection to him was through his blog.

From half a world away, it was obvious that Jim handled his disease and treatment with strength, grace, and a sense of humor.

He will be missed by many.

 

Month 99 – Stubbornness, Independence, and Relationships

My mother was fiercely independent right up to the final weeks of her life. Or at least she wanted to remain as independent as she could for as long as she could, and she generally succeeded in that.

Let’s say that this apple didn’t fall far from that tree.

IMG_20190204_195859215 (1)Last week I had a cyst removed from my right thumb (I’m right-handed). It started out quite small over a year ago and had grown to the size of a small pea just below my thumbnail. It wasn’t painful, but it was beginning to change how my thumbnail grew and, because it was sticking out from the surface of my thumb, it would get abraded if I rubbed it against things. It was time to go.

I drove myself to the hospital with the understanding that this would likely be done with a local anesthesia, but I needed to be prepared in case they needed to give me stronger happy juice during the procedure. Let’s just say that the hospital over-achieved and knocked me out for the surgery.

Thanks to the nerve blockers used in my arm, my hand was flopping around like a dead fish, completely uncontrollable and completely useless. (Much like in this classic Tim Conway / Harvey Korman sketch.) When it came time to go home, I had to have the nurse button my shirt and tie my shoes so I could leave the hospital. So much for independence.

Of course, that meant that I couldn’t drive myself home. Thankfully, I had given two friends a head’s up that I may need a ride and had each of them on standby waiting for a call from me. Tom was gracious enough to chauffeur me home during a rainy rush hour in San Diego. (San Diegans lose their minds when it comes to driving in the rain because it happens so infrequently, so I really appreciate his navigating through that mess.)

The next morning with full control of my hand and minimal pain from the incision, I had to retrieve my car from the hospital’s parking garage 31 miles / 50 km from my house. Being stubborn and wanting to regain some independence, I took three buses and two trolleys (light rail) and two hours and forty minutes to get to the hospital. But I got my car on my own. Woo-hoo! (Although it’s been almost a week and I still haven’t untied the nurse’s knots on my shoes—I’ve been slipping my feet in and out of them all week long.)

Some of you may recall that several posts ago, I talked about relationships and how disillusioned I was with some of them. Some reflection since that post and this incident have recalibrated me to a degree.

Facing any illness in general or cancer in particular as a single person poses its own set of unique challenges. Obviously, I have to impose on the lives of those around me to meet some of my needs if I can’t do things for myself. I hate having to do that (stubborn independent streak) but obviously know that it’s okay to swallow my pride and do so when the time comes.

This incident highlighted for me the handful of people that I would feel comfortable approaching for assistance, and that’s a good thing.  (Keep in mind that my family is half a continent away in Chicago, so something major would have to happen for them to be of assistance. Either I go there or one of them comes to San Diego.)

I would like that list of potential helpers to be a bit longer just to spread the burden among the lot of them, and that’s where some of my questions about current relationships still come into play. Relationships that were fostered over decades before I joined social media (i.e., Facebook), seem to have been reduced to mere “likes” and 🙂 now from people who used to call, email, or visit. Will I be able to call on them and rely on them if and when the need arises? In most cases, I should be able to count on them, but time will tell.

With luck, any need for physical assistance will be years away and I’ll have time to sort things out. In the meantime, I won’t burn any bridges and will work to ensure that I’m holding up my end of the relationship.

 

Month 57 – Overcoming Self-imposed Barriers

Before jumping into the meat of this month’s post, please remember that September is Prostate Cancer Awareness Month.  Spread the word.  Take time to learn about prostate cancer risks, diagnosis, and ever-differing treatment options from your physician or from other great resources.

10561608_181079375505187_7536413718218007657_n


Where to begin?

Physically, things have been going pretty well for me, but for the last month or so, I’ve been struggling more and more with the social and emotional impact of my radical prostatectomy.

Most men who are old enough to be diagnosed with prostate cancer are already in a relationship and have been for years.  They’ve got a supportive partner who, hopefully, stands by their side long after the treatment has been given.  You sign up “for better or for worse,” and you stick it out.

But not me. I was single when I was diagnosed, and I’m still single today.

Before I get into why this has been bugging me so, a bit of context is in order.

If you’ve taken the time to read my biography in the About Me section, you already know that I’m gay. I was a late bloomer who put himself in circumstances that made it difficult to have a relationship as a gay man.

I spent 12 years as an officer in the United States Navy, long before “Don’t Ask, Don’t Tell” was enacted.  Having a relationship while on active duty just wasn’t going to happen. I was too afraid of losing my career if anyone ever discovered that  was gay.

When I left the service, I landed back in my home state of Illinois for my master’s degree, and then in a small town of 6,000 people in rural southeastern Indiana working in a manufacturing management role for 17 years.

Given the recent news about gay rights issues in Indiana, you can understand, too, why I remained closeted there. Too many of my coworkers–mostly management–expressed homophobic views that made me wary of being open about myself.  I perceived that there were real risks to my career if I came out.

After my prostatectomy, things at work were changing to the point where I dreaded getting out of bed and heading to the office.  Having been diagnosed with cancer, I realized tomorrow isn’t guaranteed, and if I wanted any shot of finding someone to share my life with, it wasn’t going to happen in Indiana.  It was time to act.

So in January 2012, a year after my surgery, I bought a house in the San Diego area (I had been stationed there in the Navy and fell in love with it); I quit my job in March; made the move in April; and sold my Indiana home in May (not exactly the normal sequence of events for such a major transition).  I had been given a second chance, and I was going to take full advantage of it.

My best-laid plans of finding Mr. Right hit a snag–a psychological snag.

In my mind, I threw up this impenetrable wall concerning sex after a prostatectomy.  I viewed myself as “damaged goods”–difficulty getting and maintaining an erection and dry orgasms–and simply didn’t know how to sell that to a potential partner.  True, sex is not everything in a relationship, but it can and should play an important part.

That concept of being damaged goods paralyzed my efforts to hit the dating scene.  “How do I tell them?  What do I tell them?  When do I tell them?”  In my mind, I couldn’t move forward until I had answers to those questions.

Thankfully, I have a dear friend who, I swear, knows me better than I know myself.  She gave me a cross-country slap upside the head from her home in Maryland that knocked some sense into me.

The only way that I’m going to get answers to those questions is through my own personal experience of getting out there and trying to date.  Each guy will respond uniquely and differently than every other guy, so there’s no sense trying to come up with a one-size-fits-all approach.  Some will want to know on the first date; should things progress so far, others may wish that I told them before taking things to physical intimacy (“Oops!  Surprise!”); and others will be thankful that I won’t be ejaculating all over their brand new 600-thread count Egyptian cotton sheets.

It’s time to break down the remainder of that psychological barrier and get out there and see what happens. I’m sure that there will be ups and downs with rejections happening more often than not, but that’s okay.  It’s time to move forward with that second chance I’ve been given.

Month 49 – Dating After Prostatectomy?

Thanksgiving has come and gone, and Christmas isn’t that far off.  The holidays are upon us.

Normally, I’d travel to see my sister and her family back in Chicago for the holidays, but this year, my new job has me working over Christmas and New Year’s, so I’ll be staying put.  Alone.

Sure, I’ll spend time with old and new friends, but it’s still not quite the same as being with family.  That brings me to this month’s topic.

I was single when I was diagnosed with prostate cancer, and I’m still single now.  While I would like to be in a relationship–to create my own family–I keep getting hung up on the, “Who would want to date a guy who has difficulty getting it up and can’t ejaculate” thought.  Because of that, I haven’t bothered to jump into the dating pool.

Sure, sex isn’t everything in a relationship, but it does count for something in most.

The other confusing thing to me is when in the dating process to tell a potential partner that all the bells and whistles in the sex department don’t work as they should.  Early?  Late?  After you jump into bed?  “Surprise!”  I don’t know.  (Feel free to post any thoughts in the comments section or send me an email through the Contact Me page!)

I guess perhaps the best thing to do is just throw myself into the pool and see what happens.  I may not need to say anything until I see that things are moving in the right direction but before they get too serious.

–     –     –

On the physiology front, I’ve had a couple of days since my last post where my body apparently got pretty tired and it didn’t take much to set off my stress incontinence–even just standing up from a chair.  That was a bit disconcerting, but I really think my body was just telling me I needed some more rest.

I’ll be going for my next PSA test the first week of January, and should get the results by the 13 January.  (I may delay next month’s post a couple of days to get them.)  This will be 8 months from my last PSA, so hopefully all is well.

Month 37 – Value and Future of this Blog

Finally.  November / “Movember” is over!

I’m glad to have supported the cause, but I’m even more glad to be rid of that itchy, two-toned beard and moustache!  (My moustache and the top half of my beard were a reddish-brown, and the rest was snow white.  Ugh.)

*     *     *

I have to admit that I’m struggling over what to write for this month’s update.

When I began this blog three years ago, it was meant to be an easy way for me to keep family and friends informed of what was happening immediately after the diagnosis.  I figured that I would let the decision be up to them to follow along, rather than me fill their email in-boxes with something they may not have felt comfortable reading.

Over time, the mission of this blog was to educate others about prostate cancer from the perspective of just one person who went through the diagnosis and one treatment option.

This blog served both purposes quite well.

But I always wanted the blog updates to bring something of value to its readers, and that’s where I’m beginning to stumble a little.

Is it of value to you to hear month after month that nothing has changed?  If it is, then I have no problem continuing monthly updates.  But if it’s not, then perhaps it’s time to shift to “as needed” updates–update the blog when I hear something in the news about prostate cancer that’s of interest, or if something changes significantly with my own status.

Perhaps I’ll let you, the readers, answer that question by completing the poll at the top right of this post.  Or, if there are specific things you’d like me to address in my monthly updates, leave a comment in the comment section below.

Don’t worry.  I can’t see myself abandoning the blog altogether or taking it down.  I’ve put to much energy and soul into keeping it going, plus I know that it’s been a good resource for some newly diagnosed guys along the way.

I’m open to your constructive comments and feedback.  What do you want to read about in these monthly updates?

 

Month 29 – Blogging About Cancer

I stumbled across the article below a few weeks ago and found it to be quite interesting, considering that I’ve been blogging about my prostate cancer for over two and a half years and 8,000+ page reads now.

Blogging about cancer certainly isn’t for everyone, and there are concerns in this electronic age.  For example, how much do you want your employer to know about what you’re going through?  How do you protect your own privacy and the privacy of others in your blog?  All things to consider.

I haven’t looked at some of the sites mentioned in any detail, but the one that offers up a calendar to coordinate visits, meals, snow shoveling, etc., is something that could come in quite handy.

During my recuperation, I had very generous friends and neighbors who would help me out, but there was no coordination, and I’d end up with three meals on one night, and go for four or five days without seeing someone.  Would have been nice to have that calendar and the ability to coordinate better.

*     *     *
BIOLOGY AHEAD
Well, last month I reported having had an erection good enough for penetration, and I’m sad to report that, for now, it appears to have been a one-time event. Still, my erections are certainly better than a year ago, and it’s something I’ll discuss with my urologist when I go for my next PSA test in May.

Other than that, things are pretty good… I can sleep 7-8 hours through the night without having to use the bathroom, and I think I’m stuck with some very minor stress incontinence (a drop or two when I cough, sneeze, or squat) from here on out.

*     *     *

Why More Patients Should Blog About Illness and Death

March 28, 201310:05 AM

I entered the world of illness blogs for the first time when I learned through Facebook that a friend from middle school passed away last Friday from acute myeloid leukemia. In the three months between his diagnosis and his death, the friend, whom I’ll call Tom, blogged beautifully and intimately on CaringBridge, a Web tool designed to help the seriously ill tell their stories and manage communication with friends and family.

Tom was 34. In his Web journal, he wrote about the trauma of bone marrow exams and chemotherapy and his anxiety about finding a bone marrow transplant donor. He supplemented his dispatches from the cancer ward with funny and raw Instagram photos, defiant tweets and YouTube videos and lyrics of the songs he was listening to.

Altogether, it was a window, painful but so rarely accessible, into the exquisite horror of a harrowing prognosis and the burden of the toll of illness on his friends and family. Tom was desperately worried about his wife, his young son and his daughter on the way. Yet his love for them rang out so clearly through his writings that the blog itself may one day be a treasured memento of the ways Tom held them close in his final days.

We share so many milestones now through social media. And that includes health: A 2010 survey by Pew Research found that 23 percent of the users of social networking sites have followed their friends’ personal health experiences on Facebook. So is it any surprise that the outer reaches of our social networks now also deliver us intimate stories of dying?

Palliative care experts, who specialize in improving the quality of life for people with a life-threatening illness, say all this blogging and sharing about illness is helping to open up the conversation about death that we so often avoid.

“As more people tell their story of dying with a terminal illness, we’re seeing a change in how we look at illness and mortality,” says Christian Sinclair, national hospice medical director at Gentiva Health Services, a large home health care company. “Illness and death are still so technically driven, or medicalized. So getting a safe space, like a blog or social media, to talk about it can be very empowering.”

Blogging empowers patients to talk about illness outside the typical frame of “the battle,” Sinclair says, and reading the stories helps family members, too. “They don’t have to dodge the hard questions, because the patient is able to tell their story openly and frankly,” says Sinclair, who also edits the blog Pallimed.

The most prestigious medical institutions, including Johns Hopkins and the University of Michigan, now encourage patients to blog their illness through sites like CaringBridge and CarePages. In the hospice community, a longtime volunteer and software engineer started What Matters Now to offer similar services.

Other institutions, like the Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C., run writing workshops. Nancy Morgan, who directs the center’s arts and humanities program, says she never instructs people to write directly about cancer. “There is a potential for wounding,” she says, especially if the patients are depressed or otherwise feeling too vulnerable. “Most of the time they do [choose to write about the cancer], but it’s their choice.”

While many illness blogs are read only by friends and family, some patients go more public with their stories. Right here on NPR.org, Leroy Sievers and his wife, Laurie Singer Sievers, blogged their way through Leroy’s cancer, which took his life in 2008. And David Oliver, a retired professor of gerontology at the University of Missouri, and his wife, Debbie, a palliative care and hospice expert at the same university, have kept a video blog of David’s illness on YouTube and this site.

Still, some bloggers keep their blogs private from certain people close to them during their illness. A 2011 survey of 41 illness bloggers by researchers at Tufts University School of Medicine found that only 1 in 4 of the writers shared their blogs with their health providers.

Holding back from doctors and nurses like that could be a missed opportunity — and not just for the patient, according to Sinclair. “I think these blogs help physicians and nurses see their patients as [people],” he says. “But there are boundaries, and some health care professionals are looking for opportunities to get closer while others want to shield themselves.”

Sinclair says that when patients have shared their blogs with him, he’s enjoyed them. “I think it helps us check up on our own mortality. Am I doing the things I want to do? Am I making a difference? These are positive questions that can get lost in the shuffle of the day.”

Month 26 – Two Down; Eight to Go; and 55

Okay. First, a warning. This month’s update will be like a ping pong ball in a clothes drier– topics all over the place.

Two Down; Eight to Go

For family, friends, and regular blog readers, you know that I can get pretty OCD about remembering dates and anniversaries. Well, imagine my own surprise when Friday, 1/4, came and went as though it were a regular day, and it was.

But it was two years ago Friday that I was having that pernicious little prostate plucked from my pelvis in surgery, and I completely forgot about it! I guess that’s a good sign. Life goes on after prostate cancer. That, or perhaps my memory is fading… 😦

Most will say that you have to remain cancer-free for 10 years to really have beaten it, so Friday marked 2 years down, 8 to go.

55

Somewhere between last month’s post and this month’s post, I celebrated my 55th birthday. My new motto regarding birthdays–regardless of the number–is: Any birthday you’re around to celebrate is a great birthday!

Blog Reader Visits

This week, I visited with two guys who I’ve met through this blog. Kind of building a mini-support network, I guess.

One had his radical prostatectomy in May 2012 and is progressing nicely. The other just began this journey with his prostate cancer diagnosis last Friday. I wish him well.

BIOLOGY AHEAD

Jinxed

Wouldn’t you know it? After writing last month’s post about sleeping through the night, I’ve been having problems sleeping through the night. Go figure.

When I was staying with my sister for the holidays, two of the five nights I was there, I was up peeing four or five times through the night. My fluid intake wasn’t any higher than normal. (Really! No 12 pack of holiday beer or gallon of eggnog…) In fact, the one night, I was beginning to wonder, “Where is all this coming from?!?” I’ve had a couple nights since where I’ve been up two or three times.

PCa and Dating

My gut tells me that I’m in a tiny group of prostate cancer (PCa) survivors who are single. The vast majority of PCa survivors are already in relationships, and their spouses/partners were part of the treatment decision-making process, fully understanding the risks and possible side effects when it came to sexual function.

One of my New Year’s resolutions was to throw myself into the deep end of the dating pool because I really would like to share my life with someone.

My struggle, however, is figuring out how and when to tell that someone about the PCa, the surgery, and its impact on my sexual function.

With only one nerve bundle remaining, I can only achieve a 50% – 75% erection–not enough for penetrative sex. And, of course, when I orgasm, there is no ejaculate–zip, zilch, nada.

Relationships should be founded upon open, honest communication. But somehow I don’t think I’ll swim even one lap in the dating pool if I walk into the restaurant and say, “Hi. Pleased to meet you. I can’t get a boner and I don’t ejaculate. Still wanna try this out?”

Nor do I want to string someone along for weeks or months and then find that romantic moment where things would progress to the next level and have to say, “You know… There’s something I’ve been meaning to tell you,” or, worse, “Surprise!!”

Relationships are more than just sex (and intimacy is more than just intercourse). So part of me says let the person get to know me over a period of time, and if there’s a real connection, then they may be able to overlook the sexual function issues. But if it is an issue, then there may be two broken hearts as we head off in separate directions.

Somewhere in the middle may be best. Perhaps in the 3-5 date range. If it looks like there’s a possibility that this may go someplace, let them know at that point. They’ll know enough about me to make the call as to whether my dashing good looks , charming personality, and quirky wit outweigh the sexual function shortcomings.

So wish me luck.

Month 22 – Status Quo

Aside from this being Prostate Cancer Awareness Month, there really isn’t much that’s changed since last month’s post.

Things continue to go well on pretty much every front with the exception of the sexual function.  That’s still only running at the 50% – 60% level and I think it’s time that I retry the Cialis again.  (Readers of this blog may recall that I had problems with my vision shortly after starting it after the catheter was removed, so I stopped taking it.  I thought eyesite was more important than an erection.)

I did find that there’s a local prostate cancer support group in my area that I may get involved with, mainly to share my experience with guys who are newly diagnosed.  I’ll have to do some research on it…

So that’s about it.  A short post this month.