Author: MichaelHeil

Saturday, January 7

I lie comfortably in our cozy window seat looking out on our sauna in the yard watching the large snowflakes fall and pile up just a few feet away. It is so silent and tranquil. I enjoy the lazy, peaceful ambience. The outside serenity seems to echo the recent transition from hectic to calm of my cancer journey.

This first week of the new year has been an excellent one…………..

I feel good about the decision to start phase three cancer treatment. This is a simple daily oral dose of enzalutamide, a synthetic non-steroidal anti-androgen drug approved in 2012. The final logistics of implementation required only a few minor phone calls. Best yet was Laurie’s excitement as the UPS driver skidded to a halt on the icy street in the front of our house and bounded up to the door with my first month’s supply of medication.

I also feel good about not participating in the OHSU biopsy study. We eliminated a drive to Portland for aggressive poking and prodding. Additionally, no need for post biopsy recovery.

Laurie and I have immensely enjoyed playing in the snow, both in the mountains and here in town. Yesterday’s urban hike was particularly gorgeous. Frigid temperatures coupled with a brilliant sun reminded me of childhood times back home.

 

Finally, I am excited to have started my winter training program for the up-coming climbing season. I look forward to gym time – solo as well as with my Oregon climbing buds.

It is indeed a good time! I feel great physically. I feel centered;  my emotions in check. I love the prospect of a restful less traveled next few months. I am happy and am fully convinced that life is indeed grand!

So, for now, I ride the wave and appreciate the calmer still.

Sunday, January 1, 2017

A gigantic HAPPY NEW YEAR wish to all my friends who continue to accompany me on this most improbable journey! May your own resolutions, intentions or wishes bring you joy and happiness throughout the year!

I would like to share my one intention and one wish for the year:

• My intention is to seek and then embrace the wisdom, which will allow me to yield and adapt to the challenges presented me throughout the new year as I continue to navigate this cancer journey.
• My wish is that this new anti androgen therapy drug, Enzalutamide, does the trick and keeps those pesky tumor cells at bay for the entire year.

 

Climb On my friends!

Friday, December 30

The craziness of my full time job came roaring back with a vengeance. This is after a delightful respite capped by the Christmas Day family get-together at Steve’s place. I  worked exceedingly hard at keeping things straight – even constructing a written summary of the bigger issues to help guide me (attached).  I was extremely happy NOT to find myself flustered.

I continue to shower enormous praise on all the folks with whom I interface at OHSU.  My current star is Richard who has worked tireless over the past week with MODA and XTANDI Support Solutions to overcome denials of insurance coverage for Enzalutamide, the cornerstone drug for my next phase of treatment. Claire, the biopsy trial coordinator, and Beer’s nurses, Pam and Erin, also ROCK! They have put so much time and effort into me that I feel like I am their only patient…….Incredible!
A shout out also to the other kind and courteous folks at MODA, UCSF, XTANDI, Peace Health and Oregon Imaging who helped me navigate through this hectic time.

Except for a current hiccup this very morning concerning actually receiving my first shipment of Enzalutamide, things feel considerably calmer. I decided not to participate in the biopsy trial at OHSU – deluge of pretests, scheduling issues and a low probability of obtaining adequate tumor sample due to its decreased size (a good problem). I hope to start Enzalutamide presently. All seems in order for the January 17 follow up appointment with Dr. Small and the subsequent PMSA PET Scan at UCSF. Finally, I see Dr. Beer on February 7 to assess the effectiveness of this new phase of treatment. Calmer!

A few notes before signing off:

On the dark side: PSA continues to inch up. Also recent bone scan shows two NEW foci of abnormal activity: My left hip and sacrum. They say this is compatible with progression of metastatic disease.
On the bright side: The recent CT Scan shows a further significant decrease in visible of liver lesions.

 

So it goes…………….Time to Relax and Breathe!

 

 

 

 

Or…………Go Play in the Woods

Sunday, December 25

 Opening holiday cards, stringing lights, listening to Christmas music and welcoming cookie bearing visitors sure rekindle wonderful childhood memories. Memories also: vividly recalling the sensational feeling of complete relaxation upon finishing final exams at university or submitting end of semester grades when teaching – the exultation of a gigantic burden lifted. Finally, the memories of traveling, sometimes long and far, with the singular focus of being with family, friends and loved ones………..Tis’ The Season.

This year’s season is as cheerful as past years:

• Cards, lights, music, cookies, visitors – Yes!
• A few days of freedom away from the medical system – Yes!
• Physically feeling the best I’ve felt since springtime – Yes!
• Family and friends close-by and Christmas evening festivities at Steve’s house – Yes!

I acknowledge another feeling of connectedness. It is with those physically distant family and friends through technology. Over the last few days the emails, texts, phone calls, videos and blog responses have been remarkably special and have substantially augmented my joy and happiness during the season!

In the midst of this extremely joyful season: I remain eternally grateful for the awesome support while I continue my journey. I look forward to a relaxed day, free from the worries of medical issues – drugs, insurance and treatment speculation. I wish that we all may be cozy and warm while enjoying the special time spent with people we LOVE!

 

Happiest Days to All!

Wednesday, December 21

“So Mike, where have you been? What’s up? How’s it going?”

It’s been a long time since I felt like I’ve worked full time – you know, working for the man! Well, I guess that’s where I’ve been – working long and hard to help align the stars in my quest to deal with this dynamic disease.

The story starts a few months back, post-chemotherapy. My PSA readings were slowly, but steadily climbing. Simply stated, this meant an active cancer. So began my full time job.

The job description seems to include doctor appointments, information gathering, a blood test here, a CT scan there, an IV for another isotope, a 3-hour wait, fasting now, lots of water later, phone calls, understanding criteria for clinical trials, navigating insurance nuances, monitoring the body for ‘other’ changes, starting a new prescription drug and ultimately deciding on the next course of treatment given limited data. The unconditional support, concern, empathy and expertise of Susan and the polite, dedicated professionals at OHSU, UCSF, and Peace Heath has been invaluable. Nonetheless, I often found myself stressed and barely in control.

The weekend respite was marvelous! We spent all day with our dear friends, Tim and Pam. Furthermore, we did so in a chilly winter wonderland, surrounded by pristine forest and under blue, sunny skies.

The weekend was sandwiched between full workdays. Friday called for multiple body scans in Eugene. These scans were a requirement for enrollment in an OHSU clinical trial designed to understand how cancer cells mutate after treatment with enzalutamide, a powerful hormone therapy drug, which will probably be the centerpiece of my next treatment regime. Monday called for our sojourn to OHSU for a physical exam, blood tests and consent form signing– all of which were also requirements for this clinical trial. Tuesday was my killer 20-hour day – down to and back from San Francisco. I participated in another clinical trial designed to help evaluate a prostate cancer diagnostic tool. Today I spent endless phone hours dealing with the fact that our insurance company denied the claim for my next treatment drug. The repercussions of this could be serious, but the team at OHSU suggests I sit tight and let them work it out. They assure me that a few weeks of no treatment will be just fine – but I must admit I am a little rattled……….

I guess the long and short of it is that it’s a tough week at the office. We’ve all had them and probably will have them again. We survived them and moved on. So there you go…………Mike’s been struggling at work all week long!

 

But then again……………….

Do photos like this make it all worth it?

Friday, December 15

 Remember being an elementary school kid, going to bed on a cold winter night. You would hope against all odds that upon waking and peaking out the window a beautiful blanket of white snow would cover the ground. Better yet, you would get to snuggle back into those cozy blankets and sleep in until daylight. Best yet, it was going to be an all-day play day outside in that blessed snow. Yes it is A SNOW DAY! Oh, was that the best feeling ever? Life just did not get better for a 10 year old!

As a middle school teacher for 25 years, I always professed that I did my best work when I was in the mindset of a 13 year old. I called it ‘in the zone’. Thus, I often got to relieve those hopes and joys of a SNOW DAY well into my 50’s. It was like a free day – a gift of 24 hours – you could do anything you’d like and not fall behind.

All these memories came flooding back yesterday when I realized that getting to OHSU was simply out of the question because of winter weather. Driving to Portland, being briefed and then signing the enrollment papers for a cancer research trial along with the subsequent blood tests would just have to wait – I had a free day – a gift of 24 hours.

Laurie and I went on an extended, chilly urban hike. We reveled in the winter beauty and inspected the ice damage. We came home; she made chicken soup while I played in the yard (with chainsaw). Later we read, relaxed and did not fall behind – a fine day!

Looking forward to what today brings!

Sunday, December 11

Saturday night I experienced an extended profound sense of unbridled happiness!

Laurie and I went out to attend the annual Cascadia Wildlands Wonderland auction. This is a fine event, for a wonderful organization, attended by staunch environmentalists, who think just like us. Not only are they our ‘peeps’, but some are our best friends.

From the time I entered the hall I continually bumped into friends. Their genuine interest and profound concern for me was extremely heartwarming and quite touching! At every turn they would ask, “No Mike, how are you really doing?” They legitimately wanted to know firsthand, exactly where I was and how I felt while on this cancer journey. They wanted a real, true, deep interaction – nothing fake! I could sense the emotion in their voice, the intensity in their eyes, the softness in their face, the kindness in their heart and the warmth in their embrace. They were tender, caring, compassionate, generous, fervent, warm, kind, and devoted. I truly felt the space between us fill with love – an absolutely incredible, overwhelming, awesome feeling!

There was no hint of feeling sorry for me………….it was just plain caring. They solely wanted to help. They wanted to be there for me no matter what my need. I got the sense that they would do anything in their power to whisk my disease away and make the world right for me (and them).

Over and over this happened, until I realized that there was a grand interconnectedness between us all! We were all feeling, responding and sharing in our humanity! I was phenomenally impressed and extremely elated!

I whispered to Laurie: “I am so happy to be alive!”

Saturday, December 10

 Apparently my journey has temporarily diverted me away from my friends in ‘blog land’. Well, I am back on this cold, wet winter day in the Pacific Northwest.

For the last few weeks, despite physically feeling better than ever, I find myself struggling. I have fallen back to a place filled with anxiety and unrest. I get extremely agitated over the smallest things – a conversation, a sequence of events, a phone wait. Minor obstacles often seem insurmountable. I cannot seem to just let things roll off my back, like water off a duck. I cannot seem to trust that things will work out without sticking my nose in every tiny detail.

Where is my middle way?

It is not quite as bad as the four-year old temper tantrum, but there are overtones of such. Embarrassing! After settling down, which normally does not take long, I find myself sad and reflecting on how pathetic I had acted. These feelings are new, real and upsetting. My hope is that as I face them squarely I will develop strategies to deal with them.

So it goes, as I continue in the vein of: “Keeping it Real”.

Despite this real struggle, it feels good to be home. I busily continue my current full time job – preparing for my next treatment. The doctors want blood tests, a CT scan, a Bone scan, a Biopsy and more blood tests. I want to be fully appraised of what to expect and what needs to be decided so I read and communicate often. I never imaged that I would accept a job requiring an early morning flight from Eugene to San Francisco only to return late that same evening.  I thought that was for jet set executives types – not the likes of me. It’s not quite frantic but far more hectic than I like!

Be assured all is NOT dark and gloomy. The photos from this past Wednesday show how easy it was to get a campsite and the magical winter wonderland in which we played! You may ask how hard can it really be to center yourself when such beauty surrounds you? That’s exactly what I am thinking right now!

Sunday, December 4

I have been struggling over the last few days to fully comprehend that MY cancer has now progressed to what is called metastatic castration-resistant prostate cancer. I think, this means the androgen deprivation therapy has simply stopped working. Intellectually, I know that almost all patients do progress to this situation, but something about this stark reality continues to drag me down. I wrestle with this, but marvel at how things seem to be coming together all around me…………..

– I have been accepted into a clinical trial at UCSF which involves a fancy imaging device know as a PMSA PET Scan. Apparently it can ‘see’ much more of my cancer than traditional devices (I’ll leave the rest to the experts).  The folks at UCSF have been wonderfully accommodating and all-around delightful. I look forward to seeing them soon.

– Dr. Beer talks about the prospect of an OHSU immunotherapy trial expanding in about two months, for which I may be eligible. The initial results are very promising for patients with liver metastases (just like me). He’s excited, so, needless to say, so am I!

– My climbing buddy, good friend and research doctor, Chris, tells me he will speak with Dr. Beer about my case. He then will assist me in making the best decision for my next course of treatment.

– I receive a call from my most staunch medical advocates, Susan and Manfred, while vacationing in Maui. They wanted to know exactly how the appointment went last Wednesday. They confer with each other and offer much appreciated advice and support.

– Snow piles high in the mountains and Laurie, Paul, Yvonne and I enjoy our first back country ski of the season. Gorgeous!

– BEST OF ALL is how the magnanimous Laurie continues to shine and bring love and light to me under all conditions and circumstance. She stands by me as strong and solid as a granite boulder – truly stable and relentlessly unwavering!

*

How fortunate I am as things come together for me!

 

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!