Staring Into the Pipeline

The side effects of treatment can make us doubt our personal strength. 

Pipeline-Facility

 

I often say that there is no better time to be a prostate cancer patient–if you have to be one–than today. I believe it. I encourage many fellow patients with the idea. The pipeline, as underscored by the news coming out of this week’s ASCO meeting, is full of promising new drugs, combinative therapies and neoadjuvant (prior to primary treatment) use of new drugs that are currently being used later in disease progression.

But there are times when it is difficult to embrace the optimism.

For me, weekends can be the hardest times to believe. During the work week, we wear our “everything is fine” masks, we’re distracted by tasks and issues of the office, working hard to keep up physically and mentally and crashing when we return home, often falling into our beds early with no other option. There is little time to ponder how we feel emotionally or physically. Forward… forward… forward… There is little choice for anything else. We need to keep our lives together and strive for normalcy.

Weekends are different. Like everyone, we shift from overdrive to neutral. As patients, we can remove the masks. We hope to coast a bit, spending newly revalued time with family and loved ones and perhaps catching up on a few projects that have been put on hold for obvious reasons. But, with our weekly guard and distractions down, simple things like taking a long healthy walk, organizing the garage or planning to have friends over can hit us over the head with fatigue and pain. Tired and vulnerable, the cracks in our emotional armor can widen and turn to gushers. I find myself walking through the aisle of the supermarket trying hard to resist a tearful breakdown. It is driven, no doubt, by a near total lack of testosterone and the fact that each step makes me feel like an 85-year-old man. In the privacy of my home the emotional episodes come without warning. Physical pain overtakes will.

It’s times like these that one’s optimism for the pipeline can turn to doubt. Sure, if my disease recurs, there are more treatment options. If I become ADT resistant, there are multiple options including chemo and new drugs such as Zytiga (approved) and enzalutimide (pending approval) with Alpharadin and XL184 fast on their heels. More than 20 others are also in trials.

I believe in the pipeline. I believe overall…

Like many patients with whom I speak, my experience has taught me that I am not afraid of death. That is a matter of nature and biology. From the day we are born, it is our fate. What I am afraid of is missing those I love. That’s a matter of the heart.

I’ve always been a proponent of not putting the cart before the horse. Yet, I’ve learned it’s not always easy.

In my moments of doubt and vulnerability I wonder: should the time come when I have to stare into that pipeline of promising new treatments, will I be able to find the strength–supported by love and duty–to persevere and step up to the plate? Or, might I fail the test, tempted by an urge to let nature prevail? Others find the inner strength everyday. Would I be able to measure up?

That’s the haunting question that brings me to my emotion’s knees. It’s the dragon many of us need to slay with our swords of the heart and a battle cry of “I believe!”

Do Dogs Get Prostate Cancer? A Life Reminder

Yes, Diana… the sad answer is: they do.

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I received an email from a colleague today. She had taken a voice mail from a middle school girl asking if dogs can be diagnosed with prostate cancer. I was sure they do. Cats and other animals get it. But, to be absolutely sure, I doubled checked my data banks using a quick Google search. Sure enough, the screen populated with numerous links to information about dogs and prostate cancer.

What I didn’t know is that cancer is the leading cause of death in canines over the age of two.

But that isn’t what gave me pause. What made me stop and think was the reminder that all animals, human or otherwise, are living organisms. We live in complex biological systems that can go awry for any number of reasons. This small reminder of what I already embrace, was surprisingly comforting. But we humans, because of our ability to think and reason in advanced ways, sometimes tend to let cancer take over our lives in paralyzing ways.

We build expectations that don’t always take biological realities into account. We become tied to futures we envision and often shut out the possibility of unexpected disruptions, no matter what physical speed bump or detour might present itself.

I am not suggesting that we give up on living life with dreams and expectations. I guess I’ve just come to realize the life might be easier in some ways if we sometimes remind ourselves that our bodies and nature might not always be able to keep pace with the demands we set for ourselves.

This thought underscores what I have heard many survivors say: we need to live in the moment.

Carpe diem.

HRC Update: 67 Home Runs, $800,000 to Date

Heading into Father’s Day, it’s not too late to join the fun and help Keep Dad in the Game.
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Trade out one frivilous expense this weekend and help Keep Dad in the Game by making a pledge for the 18th Annual Home Run Challenge.

 

Every 10 cent pledge and every home run is making a difference in our fight against prostate cancer. After just three days of counting home runs for the 18th Annual Home Run Challenge, Major League Baseball hitters have tallied 67 home runs each worth about $12,000. That’s a whopping $800,000+ to move us closer to a cure and prolonging life for millions of men.

Here’s some perspective: $800,000 is enough to fund nearly four Young Investigators for three years or a Creativity Award to get innovative research off the launch pad. On the other side of the spectrum, a 10 cent pledge with say, a total of 160 home runs, is just a $16 donation–less than a trip to the movies or a fast food meal for three. As a survivor, I might be a bit biased on which of these expenditures represents the best investment. But it’s pretty hard to argue for fast food or butted popcorn and the latest action flick when we can save lives with just one easy diversion of our weekly expenditures.

As I said, every 10 cent pledge and every home run is making a difference in our fight against prostate cancer. Please consider being part of that difference for so many. Visit the Home Run Challenge website before Father’s Day and help us Keep Dad in the Game.

Wishing every Father out there a Happy Father’s Day and abundant health.

Yes, Son… I’m Going to Be Alright

Despite a <0.1 PSA reading and testosterone level of 11, yesterday was a discouraging day. 

 

I arrived at my oncologist’s office yesterday afternoon with great anticipation. I look forward to my quarterly visits as if they are a special school outing. I really like my oncologist, who provides a good deal of comfort along the way, and I’ve always liked getting good report cards. This time, I also had to discuss a few concerning items–particularly a 15-pound weight loss in 2-3 weeks without trying and a whole new series of lower back, hip and abdominal pains (some of which I know fully well can still be remnants of radiation).

When I checked in, there was a problem. My appointment had been rescheduled for next Monday. They said I was notified. I retorted that indeed I was not. The poor receptionist must has seen the look on my face and immediately said she was contacting her supervisor. At  that moment, my wife arrived and I told her what was happening. I then took a walk about to try and control the tearful outburst that was welling up inside. You just don’t do things like this to cancer patients. Not when they measure every step of the journey so meticulously…

As I entered the reception area once again, the supervisor appeared and apologized. She could see I was more than upset and asked if I would see another doctor. YES, of course… I have things to talk about!  The Lupron-emboldened being that I can be, also demanded assurances that my next follow-up would be sans co-pay for the snafu. What the heck. After some reshuffling and a small wait, I was given the someone I needed to see.

The good news: My PSA and testosterone levels remain low.

The disappointing news: The oncologist doesn’t like the sudden weight loss, nausea and new pains as well. He ordered new blood work, a referral to a gastroenterologist to see if there are any non-prostate cancer nasties brewing and of course, a bone density test–despite the fact that I live in southern California and choking down enough vitamin D to satisfy a race horse, I am vitamin D deficient. We all have to ask…where the heck it is all going? If the endoscopy comes back clear, then it’s off for another CT.  The last time I had one, the contrast medium ended me up in the cardiac cath lab for a few hours of observation. The fun continues.

I walked out of the office downtrodden. Despite having received my good report card, it was a teary ride home. I kept thinking of that famous quote, “Oh Lord, I’m sick and tired of being sick and tired…” More tests, more waiting for results, more follow up visits. I am just plain tired of this crap. I can deal with the possibilities of cancer. Tell me if it will win or lose and I’d be okay with either answer. It’s the process–two steps forward, one or two back–and the ever present waiting that I find difficult.

As I entered the house and went to my bedroom, I had recovered. As I changed out of my work clothes, my 14-year-old came in and instinctively asked, “What’s the matter dad…?”  I broke down into a flood of tears and explained that I was tired of dealing with cancer. He replied with, “But you’re going to be alright, aren’t you…?”

“Yes,” I said… “of course I will be.” What else does one tell their young man who needs security and reassurances for his future?

However down I may get at times, I still believe. I must believe.

A Brighter Shade of Cardinal

My music lessons provide an interesting proposition for temporary defection…

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Two months ago I surprised myself by picking up an instrument for the first time. It was the right therapy to deal with what was becoming a paralyzing fear of coming off of treatment–something many patients report experiencing. Having something totally new and that I had always regretted not trying is giving me a bridge to the future, enabling me to ponder how well I might progress as well as how and where I might apply this new found interest.

What it didn’t prepare me for was the surprise I was handed by my instructor, Scott, at the end of practice two weeks ago. He handed me a bright red drink and said it was the official drink of a certain university’s band. It was indeed a tasty libation. I thought it was a reward for not hitting too many bad notes that evening until Scott asked,“So…, do you want to march with them?”  

I was definitely flattered by the confidence in my yet emerging musical abilities. I was also surprised by the question. It certainly provided a partial answer to what I might someday do with this new-found, potential talent. I know you’re wondering how someone at my stage of life might find themselves playing at half time with a university band. Well, it seems that alumni are often allowed to join in the fun. I’ve also learned that there is a roving band of gypsy players who often help fill in the ranks of marching bands. That’s a little known fact I never knew until now.

Despite the fact that this band is one of USC’s arch rivals, I certainly couldn’t let that stand in the way of such an opportunity. Besides, not having received any such invitation from the Trojan Marching Band, I can’t consider my enthusiasm an act of treason. It’s more of a gracious acceptance of a kind and considerate invitation.

The next day, a quick poll of my SC network of friends provided a strong support base for my intended, albeit temporary, defection to a perceived enemy. Thus far, there is only one strong dissenter of my actions. She is a colleague who is currently pursuing her Masters degree at USC Annenberg. Right now she is relatively new to the Trojan family and feeling quite proud and protective of the traditions. I can understand that. It’s also fun to volley with a dissenting voice.

One of my ATO fraternity brothers and very close friend responded by saying, “it’s a great bucket-listy thing to do…”  I didn’t flinch at the sound of that. I know he would be one of  the last people on earth to count me out in the short term. Life is full of wonderful opportunities that deserve to be thrown in one’s bucket of great experiences. We all need to keep grabbing them even if the bucket overflows.

The gauntlet has been thrown. I accept even as I proclaim, “help me, Scott… help me! Man the life boats…”

On the drive into work today, I blasted the band in question’s music and smiled all the way. The guards at the garage gate were certainly amused by my grand musical entrance. Three pieces on the band’s historical play list intrigued me:

Stevie Wonder’s Don’t You Worry About a Thing (appropriate for my recent state of mind…), The Beatles’ Birthday  (from my perspective, I’ll always welcome more…) and Dammit by Blink 182 (I can do this… I will do this… and dammit, no cancer or intrepidation is going to stand in the way…).

As for Dead Man’s Party… That’s one piece of sheet music I don’t have time to even consider. Perhaps I’ll make a paper airplane out of that sheet and cast it to the wind. I’ve got 12 months of work cut out for me.

Art with a Very Pointed Message

Whether it’s to entertain, inform, inspire or just soothe the frazzled soul, I’ve always believed that art should make a point. This one does.

Pedestrians in San Francisco will no doubt be taking notice of a new piece of public art on the promenade near the City’s Embarcadero overlooking San Francisco Bay. It’s bold and daring. It’s definitely direct. It’s message (one certainly hopes) is not meant to be taken sitting down. What’s more, it can’t help but get folks talking. And, when it comes to prostate cancer awareness, isn’t that the er… point?

According to artist Oliver Kreitman, an artist in residence at The Instructables Lab, ”This is a piece of public art designed to raise awareness of prostate cancer in a playful and slightly shocking manner. The hand is posed as if ready to perform a gentle digital rectal examination on an unsuspecting member of the public who accidentally sits down on it. ” (Gentle? Sorry, Oliver–the dimensions remind me of the old joke that a man should choose his primary care physician based on the size of his or her hands…)

Oliver goes on to remind his audience that,”Prostate cancer is a common and potentially very serious disease. In the USA, it’s the second most common cause of cancer-related death among men. Unfortunately, many people are reluctant to discuss it openly and even more reluctant to get tested for it. With this little installation, I’m hoping to at least get people thinking about it.”

I guarantee Oliver will be successful in getting folks both thinking AND talking about it!

No matter what what your art sensitivies and preferences are, I have to “hand” it to Oliver for taking a chance and putting himself on the line for building awareness!