When Patients Meet Researchers

Experiencing the research front first hand can be a powerful moment for patients. Just ask Jim Higley, the Bobblehead Dad. 

 

Earlier this month, I had the opportunity and honor of having a dozen patients and survivors join us for PCF’s meeting with many of our Young Investigators and their mentors in Washington, D.C. While I knew it would be a special moment of convergence for both our scientists and special guests, I certainly underestimated the powerful emotional impact it would actually impart. I suppose my miscalculation is a possible by-product of working where I do with one foot in each world.

For the past two and a half years, I have been telling patients, their families and caregivers that if you have to be a prostate cancer patient, there is no better time than today to be one. It’s a statement of fact. I see it everyday. What I forget is that if you don’t have that daily interface with the latest developments–that sneak preview of discovery that lies behind the curtain–it might sound like a well-meant platitude intended to provide comfort. But when patients can actually see and hear from actual researchers about the scientific progress that is being made on their behalf, it provides for a very powerful moment.

This point was driven home to me by the post-event comments of those patients and survivors who were present that weekend. And, by the comments of our researchers who were able to interact with our guests. Perhaps one of the best depictions of the interaction between the two groups was shared by my recently made friend, Jim Higley, better known to many, through his own blog and radio show, as the Bobblehead Dad. Jim was diagnosed at age 44 with prostate cancer, making him the fourth member of his immediate family to receive a diagnosis. A single dad, the experience moved him to give up his life in corporate America and become a full time dad.

I am pleased to share with you Jim’s eloquent summary of  his experience, The Importance of Prostate Cancer Research, which he posted on The Huffington Post this week.

Thank you, Jim. It’s a pleasure knowing you. You are an inspiration to so many and I am so pleased you’ve earned the coveted title of “Survivor.”

 

Embrace the brotherhood

Living within the prostate cancer brotherhood is a highly personal experience.

All of us who have been diagnosed with prostate cancer are members of a brotherhood–an order that provides unique understanding, perspectives and bonds. In the 17 months since my diagnosis, I have learned that as with many fraternal orders, there are also levels. However, in our case, progression through the ranks is neither desired nor encouraged.

In the lowest and perhaps preferred rank are those diagnosed with low grade cancer, for whom we hope watchful waiting or proactive surveillance is all that they will ever require. But, their fears and doubts are the same as all members. What if my PSA levels rise…? When might they rise…? Am I doing enough? What about my family…? Then there are those whose initial treatments were successful, and who have passed that magical milestone and are declared “cancer-free.” For these, there is heartfelt celebration for their victories. I know. My heart lightens and my smile widens everytime I meet a fellow member who shares their marvelous news. I love to hear these stories and I share them with others to provide encouragement and bolster hope.

In the upper ranks of the order are those who have been diagnosed with advanced, metastatic disease. This group has two levels: those, like me, who are in primary treatment and still hope to hear those words–“you are cancer-free”–in a few years; and finally, those whose disease recurs and for whom life becomes a continuing series of treatments and remissions.

Whatever our status is within the order, we are all the same. All of us understand, all too well, the fragile nature of our human existence. We accept and lament our realities. We hope for good outcomes.

Life in the order provides remarkable experiences. Priorities are clear. Exchanges always begin with a sincere “How are you doing?” and a caring visual check or two to confirm the answer. Treatment plans and remission updates are often shared in hopes of providing some data that might be of use to the other. Even what was once a casual greeting in emails,“hope all is well,” takes on new meaning. When one of the brothers falters or has an obvious physical limitation due to current treatment, the physical assist and emotional support are always at hand. It is a kinder, gentler world instilled not by a lack of testosterone, but real human compassion and spirit. You can read it in many of the readers’ comments that appear on this blog.

This past week, I spent time with two extradordinary gentlemen I have had the honor of knowing for some time now. Both are battling recurrent disease. One was a powerhouse in the financial world prior to retirement, the other a powerhouse in government. Both are ardent advocates for curing the disease and big supporters of the work of the Prostate Cancer Foundation. Together, we attended PCF’s annual Scientific Retreat.

During the meeting, the toll that their current drug therapies are extracting from them was visible. Yet, they persevere, moving forward with determination and, as one of them says, “hoping to get another five or more years” out of his current treatment. They have supported numerous clinical trials, helping future patients while also trying to beat their cancer. When one looked at me and said, “Dan, I am blazing trails for you should you ever need them,” I could only put my arm around him and say, “Stop. You’ve blazed enough trails. Let’s see an end to your cancer.”

I know these two gentlemen are sincerely following my progress and hoping I never cross over into their ranks. I too follow their progress and hold them in my prayers and my esteem.

Following the retreat, I was invited to fly back to San Francisco with them on a private jet. As we flew to San Francisco, these two men sat on the other side of the aisle. They chatted a bit about their current progress and then dozed, I could see that the week’s schedule had been taxing. The aisle on the small jet provided but a small separation between them and me. I wondered if I would ever cross that symbolic divide. As I watched them in silence, I knew that, as brothers of the order, they would do anything they could to keep me and countless others from joining them–to keep us from rising in the ranks.

When we landed at SFO, we said our good-byes and embraced.

An embrace from a fellow member of this fraternal order is like no other. Unspoken, and in a way no other exchange can, it says: I wish you peace. I wish you you strength. I wish you life

A Brighter Shade of Cardinal

My music lessons provide an interesting proposition for temporary defection…

Scary-roman-soldier

 

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.

Defining Myself Along the Journey Takes a Musical Turn

0

As a believer that life often happens as it should, I gave into life’s flow and found myself taking music lessons.

 

As a reader of this blog, you should thank your lucky stars that this forum doesn’t come with a sound track as things could get pretty painful over the next few weeks. I am now taking saxophone lessons. Yes, you read correctly. At 53, one might expect some other, less harrowing hobby or interest to crop up. But this is where life’s flow has landed me and who am I to question it?

During the past few weeks, life’s rapids have steered me, crosscurrent by crosscurrent into community action, parent groups (gasp!) and the opportunity to get to know my son’s middle school music teacher who is an extremely talented musician and instructor. His middle school musicians could easily compete, note by note, bar by bar with high school performers. Last week, after reviewing a draft of his CV, I sent it back with a few very minor notations and wrote,  ”OK, I’m really impressed now. (And somewhat depressed that I never picked up an instrument.)”  I’ve always loved almost any type of music and am even in awe of my 14 year-old trumpeter and his musically-inclined friends. For me, it was always a dream not to be realized.

Two minutes later, a reply landed in my inbox: “It’s never too late to pick up an instrument…”

Ummm… Suddenly I felt as if life’s flow had pummeled me into a rock and I was jammed. Should I fight my way out or wait for the river’s flow to adjust and carry me forward? I walked out of my office, filled with a mix of amusement and terror, and took an informal poll of my colleagues. I asked them “IF I were to play an instrument, what would it be…?”  Luckily, for my ego, there were no immediate bursts of laughter. Instead, three heads turned in unison and said “Sax…”  Was the immediate consensus some sort of sign?

I sent another email: “How about sax…?”

Immediate reply: “Sax would be a great choice–easiest to learn… badly!  Took me about a week to understand it about as well as I do now.”  I was beginning to understand that this might be an opportunity rather than a source of panic. I liked the words “easiest to learn…”  As for “badly…”  it’s a challenge I accept. Regarding the rest of his reply, time is relative. I am sure his week will be many for me. I accept that too. 

Oddly, this twist of fate couldn’t come at a better time. It will help me define myself in a new way and provide a welcomed alternate focus as I come off of treatment this fall. As patients, we define ourselves and realities in ways that give us as much comfort as possible. For two and a half years, I have been a “patient” with an active, multi-pronged plan of attack–surgery, radiation, hormone ablation… I will soon enter what many others refer to as ”nowhere land.” It can be an agonizing place where we patients in waiting are left to wonder what the future holds. The term “survivor” is not a definition I feel I cannot assume for another three years if and when I hear those magic words, “you are cancer-free.”  ( That’s a highly personal decision, with no right or wrong answer, that  I’ve written about before in the blog.)

As I prepare to enter the next phase of my journey, I will be more than a patient, I will also be a music student. Note by missed note, beat by missed beat, I will focus on changing that “badly” into at least a “passable” and smiling inwardly as I proceed. There will be a new milestone to achieve in that unknown future that is mine.

This is no bucket list reaction. The upside of living with cancer is that it makes you see life differently and embrace opportunity.

Thank you, Mr. Sutherland, for your patience and willingness teach an old(er) dog new tricks. And many thanks to my loving family and friends for their avid encouragement. If I ever get any good at this, I just might someday embed a soundtrack on this site with great pride!

 

How a Cinnamon Roll Changed One Man’s Outlook

It is amazing how life has a way of teaching us.

 

I received this account from Bill K. In Michigan. I thought you might like reading it. Thank, Bill, for letting me share this

Every now and then an unexpected encounter with an unknown person can impact your own thought process and make you rethink your own mortality. Such an incident occurred several weeks ago at a Panera Bread Store in Chesterfield, Missouri, a suburb of St. Louis. It was on this day that my grandson Joshua and I traveled to the local bread company for our traditional breakfast cinnamon roll. As we were entering the store I noticed a car in the handicap parking space with Texas plates. Once inside the store I spotted an elderly gentlemen attempting to balance three cups of coffee on a tray as he was preparing to leave. A lady offered to accompany him to his car but since she was next in line I volunteered to walk him to his car. Joshua held open the door and I carried the tray of coffee as the man hobbled to the parking lot.When we arrived at his car I noticed that his was the vehicle with the Texas plates. I asked him if he was visiting friends in the area or just passing through town.  His response left me dumbfounded!

He indicated that he “wanted to spend his last days with his daughter” because he was in the final stage of his cancer. Words are not sufficient in a time like this but I told him how sorry I was. Then he responded in a way that told me he had approached this juncture in his life with resignation and with no sense of regret.

“Don’t feel sorry for me”, he said, “I have lived a full life and look forward to being with my daughter. I am fine”.

There are few of us I’m sure who would have responded in such a fashion. As we placed the coffee tray in his car and he drove off I was sure he had been an inspiration to others in his life. Here was an elderly gentleman traveling from a long distance from his home and then stopping at a coffee shop to bring refreshment to others.

My grandson and I entered the coffee shop again but somehow the excitement of the day had withered at least in my mind. A nine year old does not harbor thoughts of mortality. As we drove back home to enjoy the rest of our visit I couldn’t stop thinking about my encounter with the man from the Lone Star state. I’m confident he brought joy to those he came to visit and I’ll bet he was stronger in his final days than those who surrounded him.

Rest in peace my good friend.

 

O Captain! My Captain! Our Fearful Trip is Done…You’ve Earned Your Peace, Leaving Our World a Better Place

Words of tribute written by Walt Whitman upon the death of President Lincoln are appropriate for our iconic Trip Casscells.

When I last embraced Trip a few weeks ago in Washington, there was an unspoken acknowledgement between us that it would most likely be for the last time. I could read it in his eyes. As he wrapped his frail arms around me, they seemed to communicate in unspoken words that said “All is okay. I’ll be fine and so will you…” In my heart of hearts, I knew that would be the last moment we would share together on this earth. But like all of us, I took my leave hoping that I was wrong; that another remission would magically appear and keep Trip alive and with us just a little bit longer.

But it didn’t. Trip lost his ten year battle to advanced prostate cancer this weekend at age 60. We have all lost a dear friend and inspiration. Although I only had the honor of meeting Trip about three years ago, we developed a special bond. He was everything I strive to be in life. He was also my cancer mentor, showing me how to live and deal with this disease with great resolve and dignity.

Trip would easily tell anyone he met: “You know, I shouldn’t be here right now…”  That was no understatement. His cancer was heavily spread throughout his body ten years ago. It was also a time when existing treatments were woefully ineffective for many. But while fighting his disease, Trip had the inner strength to join the military, serving as a physician in Iraq before becoming Assistant Secretary of Defense for Health Affairs. It was a position he only accepted because he felt he could improve care and conditions for our veterans who have served our country. In the same ten years, Trip also started two companies that created jobs for hundreds. Above all, he was there to share life with his friends and beautiful family. In ten years, with the help of his friend and gifted oncologist, Dr. Christopher Logothetis at MD Anderson Cancer Center, Trip achieved five remarkable remissions. Any patient or clinician will agree that’s a resounding victory over cancer.

For patients, Trip was a great supporter and advocate of clinical trials. In a video interview I did with him last November, he said “You don’t want to lose this battle thinking the drug that might save you or someone else is sitting right there on the shelf…” 

Trip, I will always remember our last embrace a few weeks ago and carry your spirit with me. This morning on my way to work, I stopped to view the Pacific Ocean and listened to Mozart’s Requiemin your honor. The constant influx and recess of waves reminded me how fleeting our time on these shores really is. In your time, you left a lasting mark in the sands of our lives for which we will all forever be grateful.

O Captain! My Captain! Our Fearful Trip is Done…Rest in peace my friend.

 

My Thanksgiving List

It’s Thanksgiving week, a time to slow down and reflect not on what we don’t have, but rather on the blessings we have been given. Here is my list for 2012… 

I am thankful for:

  • My loving family, friends and even strangers who have given their support and kindness to me these past two and a half years. You’ve woven a blanket of comfort and warmth for which I am ever grateful.
  • My colleagues at the Prostate Cancer Foundation who have provided understanding, encouragement and insight along the way.
  • My talented medical team that continues to guide my treatment and follow up.
  • The brilliant researchers with whom I have the honor of working–they are a beacon of hope for so many patients and their families.
  • Generous donors who make the work of these researchers possible.
  • The new friends and ”brothers” this journey has brought into my life.
  • The surprising opportunity to explore music–a forward-looking outlet to help deal with the stress of navigating this journey.
  • The indescribeable bonds created by meeting other patients and helping them as they have helped me.
  • Those I have yet to meet along the way.
  • A strengthening grasp on reordered priorities and what really matters in life.
  • The gift of being here with all of you to celebrate and give these offerings of thanks.

Wishing all of you and your families a Thanksgiving week filled with peace, love and abundant health. –Dan

Now tell me… What are you thankful for this year?

Zytiga Approved for Use Earlier in Patient Treatment

As I was saying, advances in treatment for patients continue to accelerate…

This just in from Bloomberg News: Johnson & Johnson has been granted approval by the U.S. Food and Drug Administration for Zytiga (abiraterone) to be used earlier in the patient treatment, prior to chemotherapy. The drug, taken in pill form, wasoriginally approved in April 2011 for patients who had had grown resistant to hormone therapy AND failed chemo treatments. Zytiga is one of five new drugs that have come to market in the past two years for prostate cancer patients with advanced disease. This new approval, less than than two years since its original indication approval is encouraging news for patients.

Zytiga is just one encouraging example of how newly approved drugs are being tested earlier in the course of treatment and, in some studies, in combination to improve patient outcomes. What’s more, there are more than 28 other new prostate drugs targeted for prostate cancer in Phase III trials. Add this news to my last post about improvements in PET scan imaging that are enabling clinicians to see and treat metastatic lesions earlier than ever before, and you can understand my optimism. It’s why I constantly remind patients that there is no better time than today to be a prostate cancer patient–if you have to be one.

Of course, from my perspective I am also pleased to add that PCF funded over $8 million for competitive research awards centered on Zytiga. The funding was used to help determine the mechanism of action of the agent, the execution of Phase II clinical trials, and continues to fund a determination of mechanisms of patient resistance to the agent. The PCF-DoD Clinical Trials Consortium, along with funded investigators at the Royal Marsden Hospital in London, were instrumental in designing the pivotal Phase III clinical trial that supported the FDA decision to approve the agent.

Another advance–perhaps even a life-giving holiday gift–for patients.

Undetectable for Another Quarter But…

…the prospect of my last Lupron injection is a mixed bag.

 

 

I corresponded with my oncologist on Friday and the good news is that my PSA levels remain undetectable (<0.1). I see him today and am scheduled to get my last three-month Lupron shot tomorrow. Then, starting August, we’ll start the wait and see process to evaluate what kind of success my aggressive treatment program has provided.

To be honest, even though I really do not like my life on Lupron, a small part of me is reluctant to give it up this summer.

While I have disliked greatly its side-effects, Lupron has provided, as one friend put it, an emotional and physical safety net. You see, Lupron is a palliative, not curative treatment. If radiation did not catch all the metastasized cells, at least Lupron will have been working as a damp blanket on the cancer camp fire. Lift the blanket and the embers will eventually flare as testosterone begins to rebuild over the next 12-18 months.

Two week ago while I was in the depths of an emotional spiral, my wife asked: “Are you afraid of coming off the Lupron? Is that part of what you are feeling?”

It took me just a few second to consider the question and say, “Bingo! I believe that’s part of it…” As I thought more about it, I must admit that the prospect of losing the safety net has been lurking in the wings of my emotional stage for the past few months.

Soon, I will have to jump into the waters of no active treatment and see how I do over the next 2-3 years. Luckily, my trusted oncologist will be on the sidelines as lifeguard, tracking my progress. It will be a prolonged sink or swim scenario. Naturally, I’d prefer to swim. But, should rising PSA start to pull be down, it’ll be back to the Lurponized wrestling mat for another round of competition. If that’s the case, it would probably be ongoing intermittent treatment until my body engineers a way to workaround ADT and other treatments need to be evaluated.

One way or another, I’ll have a clearer understanding of where I stand. As I have said all through this journey, clarity–any clarity–is a good thing.

Fellow Lupronites: Do You Spike?

I’m not talking flashy volley ball moves… I’m referring to more intense side effects following quarterly Lupron injections.

 

Interestingly, a few days before my last quarterly injection I had a conversation with my wife that went somthing like this…

Your shot is coming up. Are you ready for your spike?

My WHAT?

Your spike… you always go into a cycle of more intense reactions after your shot.

No I don’t…

Yes, you DO… I’ve seen it. Somewhere about ten days after the shot you seem to experience most–if not all of your reactions with much more intensity. The cycle lasts about a week to a week and a half or more…

REALLY…?

Fast forward to COUNTDOWN: Four… three… two… one… IMPLOSION!

Brother, was she ever right. This time I saw the clockwork in it all. Toward the end of last week, I was more emotional, more short tempered and intolerant, more fatigued and more prone to those palpitations, however milder they may now be due to my prescription for minimizing them. Those hot flashes were also back with more severity and frequency. Last night, after a day of chores around the house, I was flat on my back in bed with indiscriminate pain all over. Through tearful explanations of what I was experiencing, I had to admit it, I believe I was spiking!

I suppose when one is feeling mediocre to bad on a somewhat regular basis, there isn’t room for distinction in one’s observations. The experience all runs together as we count the days to being off the juice. For outside observers and caretakers, it’s clearly easier to see. They are the ones who have to duck and cover as we transform from Dr. Jeckyll to Mr. Hyde while needing more care and understanding.

Needless to say, I am looking forward to next week when this cycle will hopefully begin to wind down. But, now more cognizant of my own experience, I have to ask: Do any of my Lupronite brothers experience the same sort of reaction? It’s a question I’ll also be asking my oncologist in May.

On a lighter note, allow me to close by rephrasing Irving Berlin: May your days be merry and bright.  And may all your cycle spikes be slight…