Month: November 2016

Wednesday, November 30

Yesterday we met with Dr. Beer and learned that my PSA continues to climb.  This is despite the continued use of two anti androgen (testosterone suppressing) drugs. I was a little surprised and quite disappointed with the news! I’m not exactly sure why I had expected 9 to 12 months of this treatment before an escalation to the next level. After all I am feeling GREAT these days – in matter or fact, I had just mapped out an ambitious training program for the up coming climbing season and a hiking/biking trek to Europe in the fall! On the drive home from Portland, Laurie, the realist, told me that although disappointed, she was not all that surprised. She was more surprised by my optimistic outlook all week long.

Perhaps the ups and downs of cancer treatment are not that much different than the ups and downs of every day life?

There are a few options for the next line of treatment and before launching Dr. Beer would like another PSA data point. So until Dec 20, I hope to continue to feel well, enjoy my free time and experience the joy of the season – maybe even a jaunt to the mountains for a ski run on the new fallen snow.

Saturday, November 26

‘Tis the Season – the season to give thanks and appreciate all the wonderful things life offers us.

So, let me join in and offer a gigantic THANK YOU to all our family and friends. You have decided to walk along side us on our surprising, transformative and extraordinary journey. Be completely assured that your support is totally invaluable. It eases our tensions, allays our fears, calms our anxieties and compounds our joys. We are overjoyed to have you along for the ride.

 

Thank you, thank you and thank you again!

Wednesday, November 23

I sit cozily in our warm home, sheltered from the cold, November, Oregon rain. It is dusk.

Laurie and I arrived home yesterday from our 2000+ mile driving extravaganza highlighted by The Celebration. Ever since I can remember (way back into my earliest childhood) Aunt Joan would remind everyone how she wanted the most festive party upon her passing. Her intention was: no holds bar, everyone invited, no grieving, remembered joy, good food, better stories and a grand toast to by gone times. I fully assure her that those wishes were realized, as the celebration was indeed first-rate!

When I think of Aunt Joan, I think about how our relationship evolved over the years. It stated with her being my babysitter, after all she was 19 years old when I was born.  As a youngster, she was my guide on the subways and streets of NYC – The Statue of Liberty, The Empire State Building, Radio City Music Hall, The 1964 Worlds Fair, NY Mets games, Jones Beach, Central Park and more.  As I aged, we went to Broadway plays, nice restaurants, SoHo and The Village. She took me on my first airplane trip – 1968 – to visit family in both LA and SF. She introduced me to poker and I would drive her to the newly opened Atlantic City casinos and their blackjack tables. While visiting home from the university she would not let me leave without sticking $20 somewhere on my person or in my backpack. She moved to SoCal and greatly appreciated my regular visits.  When she came to Oregon I took her on casino runs, while camping in the VW van. I recall one particular visit where I helped her lay the foundation of the famous Bank of AJ. Finally, she appointed me executor of her estate.

I will miss you, Aunt Joan…………..however, I will fulfill your wish:
“Do not lengthen my time here with undue grief.”.
Good Bye!

It feels real good for me to be home. I feel quite healthy – both physically and emotionally. I feel successful in maintaining my current delicate balance – the need to stay on top of my illness; yet still living each and every day to it’s fullest! I look forward to working out, cooking, eating well, reading and relaxing – all with the number ONE person in my life:   Ms. Laurie A. Bernstein!

Thursday, November 17

By 7:50am Laurie and I had driven into the city, parked the car, checked into UCSF medical center, rendezvoused with Susan and were waiting to be summoned for our much anticipated second opinion appointment. We were scheduled to meet with Dr. Eric Small, professor and deputy director of the prestigious UCSF Helen Diller Family Comprehensive Cancer Center. Dr. Small also leads a team of physicians and researchers called the “Dream Team” that is funded by the Prostate Cancer Foundation. Of course, this is a different Dream Team than the 1992 U.S. Olympic basketball team that won the gold medal in Barcelona. It just might be that the Dr. Small’s Dream Team will provide me with exactly what I need to successfully beat my cancer. Needless to say we were quite excited!

Two and a half hours later, we exited the appointment, fully convinced that we were on the right treatment road. Essentially, Dr. Small reinforced Dr. Beer’s systemic treatment plan of two anti-androgen drugs to starve the tumor cells of their sustenance coupled with watchful waiting. He emphasized the ability to quickly adapt our plan to changing circumstances. Dr. Small also suggested the following:

– Despite rising PSA, my scans & symptoms suggest sufficient time to make thoughtful treatment decisions.
– More blood tests to check for neuroendrocine markers as well as genetic mutations.
– A PSMA PET scan. This is a sophisticated diagnostic tool available at only 3 USA sites.
– Continue my exercise regime along with vitamin D & calcium supplements.

It never ceases to amaze me how fortunate I am to have access to top notch, highest quality medical care. Phrased another way, how did a lowly, suburban, son of a first generation, blue-collar American immigrant mother ever get an appointment at distinguished and esteemed institutions like the Knight Cancer Institute and UCSF? I fully recognize my luck and fortune in this respect and continue to be eternally grateful!

 

Do we seem happy?
Because we most certainly are!

Monday, November 14

Thanks Rich, seems like not only I, but also many others enjoyed your guest post!

Presently, I am relaxing on the deck at the of home of Laurie’s brother in Marin County, CA. It is nestled in the shade of redwoods, bay trees and large ferns. The temperature is almost perfect. Yesterday, we left the festive atmosphere of Lana’s house where we played with kids, walked the vineyards and celebrated Steven’s birthday. I feel like we continue to hedonistically Live Large among family and friends!

We feel fully prepared for our two doctor appointments at UCSF, tomorrow and Wednesday. We are excited to hear their opinion on my situation. Do stay tuned………..

 

Thursday, November 10

I turn this post over to our guest author:

I decided this blog needed a little twist.

This week the Heil Bro’s (shy Tommy) shanghaied Mikey for a “Poker Excursion” to eastern Oregon. Like any other family outing, along with the poker stake came the other toys; golf clubs, pinochle deck, swim goggles & chess board. We left the PSA testing, doctor appointments and body scans behind. It was a Boys Only getaway TRIP.

During the week Mikey commented on the need to get some things done, his blog being one of them…… Well, I’ve got you covered – Kick off the shoes, sit back and enjoy some down time.

How does poker and dealing with a life changing health condition relate? Well, someone once told me “Poker is Life and Life is Poker”.  As in life, some players are guilty of playing a good hand really bad; others do fairly well playing a mediocre hand; but, the most talented and feared players are the ones who can maximize all angles on the poorest of hands.

From my perspective Mikey has recently been dealt a tough hand in life. As with poker, the true test in life is how does one strategically navigate thru those tougher challenges. After all there simply is no bluffing! As I see it, big brother has found the grace, tenacity, perseverance and emotional dexterity to rise up to this daunting task.  Further, he has tapped into the energy of a larger community (many of you now reading) and is reaping the benefits.  His skills are serving him very well and I, for one, am excited to be a part of the growing ‘rail bird’ crowd.

Borrowing another phase: “You can’t judge an entire poker session on just one hand”.  So, Mikey, as you navigate thru the twist & turns of the cancer rollercoaster, I/we plan on walking along with ya. Sometimes I will walk at your side, other times in front and still others perhaps even behind. But, bear in mind, you will never be forced to walk alone!! This is another “Life Adventure” and I want to experience it up front, close and personal with my own eyes.

There will be time enough for counting when the dealing done. So, Mikey (Harry), keep artfully teaching us the lessons of life, both on & off the tables….

–Rich

Ps.  Gale & TC thanks for joining our festivities. Great having ya along for the ride!

Monday, November 7

We all know how it goes. You surprise yourself with an idea, formulate a plan and it unfolds flawlessly – a most satisfying feeling! Well, that is what happened to me today.

For the past twenty-five years, my brother Rich, has, not so subtlety, tried to convince me to return to the good-ole-days of playing golf together. Yesterday, when asked once again, amazingly, I heard the word “yes” flow out of my mouth! Perhaps this was a particularly weak moment of mine or the stars were correctly aligned. Rich was delighted, as we now had our foursome: The brothers – Mike, Rich, Steve and Jeff. The weather was more than stellar, the spirits high and the camaraderie matchless. The only thing missing was a little friendly competition. My damn good idea on this subject was to pair myself and Jeff, play our best shot each time on every hole and see if we could match Rich’s score. Jeff and I were psyched about this arrangement, as it would clearly eliminate the frustration of that inevitable, depressing ‘duff shot’ and an embarrassing ending score. Well, the idea was perfect, as we played almost even through the first few holes. By the 7^th Rich was up 1. Our par on the 8^th, gave us a one-stroke lead. With incredible acumen (and perhaps a little luck) Rich then sank a 40-foot putt on 9. This sent the crowd crazy! Jeff and I scrambled to log our par on 9, to walk off with a dead even tie!

The standard Heil rehashing of the round’s highlights and the mutual admiration of our golfing prowess followed well into the afternoon. No surprise that Rich wants a rematch tomorrow morning before the poker sessions. All said and done, I must admit, I had more fun than I had ever thought I would – but then again – it is with the brothers!

Rich had the other damn good idea: Organizing this week long brother get-together under the gorgeous open skies of Pendleton, OR. By day, we walk miles of harvested, stubby wheat fields and play golf. By evening, we play poker, chess and pinochle. We dine, sip wine and watch the football games. Best of all we reminisce of wonderful childhood times gone by and speak of our anticipations of times to come. We break down barriers, share hopes and dreams and reinforce how fortunate we all are.

It feels especially good to me to share in person the details of my journey with loved ones. I don’t dwell on medical details, as they often elude my understanding and seem so speculative. Instead, I try answering questions as best I can, while gaining a fresh perspective on the non-medical, emotional aspects of my journey.

 

As always I look forward to tomorrow with great anticipation for yet another superb day on this unfolding journey. More to come…………….

Friday, November 4

Despite the warmest welcome and hospitality of Linda, Chris, Susan and Manfred and the timely heartfelt wishes from our dearest friends, Monday and Tuesday past were most difficult days for Laurie and me!

We departed Eugene early morning for OHSU to address the nagging, worrisome PSA rise. Our two days were packed with lengthy imaging sessions, an early morning consultation with Dr. Beer, a follow-up set of blood tests, the filling of a new prescription, a debriefing lunch and a tense wait for blood test results. By Tuesday evening we were exhausted!

The results were mixed, which, in my opinion, keeps me in the ‘interesting medical case’ category. The imaging indicated a further decrease in the visible liver lesions (-67%). Wow!  However, the PSA continues to rise (+37% in only 5 days). Our healing team is concerned but does not seem to have an explanation. Multiple biological hypotheses have been proposed; most of which elude my full understanding.

We left OHSU with a slightly revised treatment plan – continue with current hormone injections (Eligard, every 3 months), add a secondary hormone oral drug (Bicalutamide, daily), get a second opinion at UCSF in two weeks and see Dr. Beer in a month. Conspicuously missing was a recommendation for a second round of chemotherapy.

Laurie and I walked away from the emotional ups and downs exhausted! We also walked away reminded of the seriousness of my initial diagnosis and how western medical science does not fully understand nor have a cure my disease. Finally, we walked away, once again, extremely grateful for the super strong support coming from all our friends.

Physically, I am feeling as good as I’ve ever felt over the past 6 months. Thus, I must say: “………….What more can I ask for?”

Double Rainbow Blessings sent from Laurie in Ashland!
!THANK YOU!