Author: MichaelHeil

Wednesday, July 26

It has been just over 2 weeks since I’ve started hospice care and about 12 days since Laurie and I opened our house to visitors to say our final goodbyes. In my last post I tried to comment on how powerful and absolutely wonderful these visits been. They continue to exceed all possible expectations.

The only downside to these visits is that they leave me totally exhausted and fully drained of energy. So, where, have I been? Simple: I’ve been visiting, sleeping or sleeping some more. Physically I continue to watch my body slowly wither away – it is extremely hard to eat and drink with such a blotted abdomen. I still get some exercise, albeit irregular. Our hospice nurse checks in twice a week to tweak my drugs. I’m getting massage and acupuncture once a week and otherwise I try to spend as much time as I possible can with Laurie. She continues to be so very supportive, positive and just plain wonderful!

As my body disintegrates further and further and the reality of my mortality becomes more apparent day by day, it must be hard for you to phantom when I say how lucky I am. The truth is I continue to love life and what it offers each and every day. I continue to adore my friends and family as they come out in droves to support my end game. I am so happy not to get poked and prodded day after day, chasing what I now truly believe to be a non-existent cure for my cancer. I love the fact that this journey has made into a better, more empathetic person.

Happy Trials my friends!

     

Tuesday, July 18

We have opened our doors to all family and friends to say goodbye. The response has been simply overwhelming. My notes on the last few days:

I feel like the luckiest man in the world………..The power of these visits, cards, letters and texts have been so far beyond my ability to describe………….My emotions run profoundly deep…………My heart is gigantic and wide-open……….I sing with joy, despite being emotionally exhausted………We remember, share and set the record straight together……… I’ve had time to get my head around the reality of my mortality, now I watch fondly as my loved ones truly wrap their head around the situation…..….This allows us to be lighter and free ……..Words elude me as, you now become the air I breathe………

A note on future visitor logistics: Folks from out of town, please contact us to arrange a few day visit – we will make time. Local folks, please consider randomly dropping by between 9am and 1pm on Thursday and Friday of this week. If this goes well, we well set similar times for next week.

Thank you one and all you – WE LOVE YOU!

Thursday, July 13

For those family and friends who would like to visit us we welcome you with open arms. I am wearing down physically and it is extremely difficult to plan more than a few hours in advance. That said, we would like to try the following:

– You choose a time to visit, text us an hour or so before and we will let you know if we can make it happen.

– Multiple short visits would be better than singular long ones.

– We are open to any and all topics of discussion, however, please do not ask us: “What can I do for you?” We appreciate the thought, but the reality is you are doing it right now!

– Finally, please spread the word of our situation. We do not want Laurie to have an interaction with friends three months down the line starting with “How is Mike doing?”

Thank you to one and all you – WE LOVE YOU!

Wednesday, July 12

Yesterday, Laurie and I took a huge emotional step on this most incredible journey – I entered HOSPICE CARE here in Eugene.

After our early Sunday morning emergency room visit in Bellingham, we immediately consulted with Dr. Beer’s office. They did an exhaustive review of my case history, in particular, the recent rapid progression of my disease.  Their strong suggestion was to cancel yesterday’s consult with the radiation oncologist and abandon all future chemotherapy infusions!  Instead they offered to assist us setting up hospice care.

The reality is that the metastases in my liver are causing serious havoc and acute liver failure is expected.  Additionally the tumors are now showing up in many other abdomen sites. I am feeling slightly worse day by day. Alas, the new prognosis for my time on this planet is weeks instead of months.

We continue to be grateful for your faithful, perennial support shown us throughout this journey. We are painfully aware of the frustrations of not knowing what to say or how to help.

Laurie and I have experienced a few days home alone of the highest quality – our bond continues to strengthen despite the prognosis. If any of you feel the necessity for a short visit to say our final good byes we are open to receiving family and friends starting on Friday.

I am truly amazed at how quickly things are changing for us!

Monday, July 10

Events continue to unfold rapidly for Laurie and me.  Beer stated that he is out of practical healing options; we visited the cancer specialists at Providence in Portland and Dana Farber in Boston. We did a virtual consult with Dr. Small at UCSF. Physically, I feel worse and worse each day, even to the point where we did an 8-hour emergency room visit yesterday seeking relief from severe abdominal pains and peeing straight up blood.

The results of the consultations verified that I am in pretty bad shape, as my liver is failing. There seems to be only one viable, long shot clinical trial that may help me, which Susan and Manfred are presently running down the details. In the meantime Laurie and I have pressed each doctor for a prognosis.  The sad consensus is that I only have months instead of years of quality life remaining; specifically 3 to 6 months, without treatment. Admittedly, sometimes this even feels optimistic to Laurie and me.

For now, let me say that this seems all too surreal to both of us – not sure what else to say!

Friday, July 7

Normally it is the long-winded, nostalgic Rich who gives the family toast. Recently it has been the young, emotional Orion. As our family reunion draws to an end, I would like to take this honor.

This toast will not be about me but us!

We all know that Mike is sick and getting sicker by the day. Sad but true! There is nothing we can say nor do that will change this reality. I ask that you take time and simply accept this in your heart and make peace with it. This would make Laurie and I both immeasurably happy.

We are not the perfect family, but to me we are the most incredible, giving, caring, blessed and loving family and I would certainly not trade this for anything else in the entire world. Spending quality, intimate time with my family is the absolute best gift I could wish for! May this week be the first in a line for Laurie and I to continue to spend time in any shape or form with all of you!

So I now ask that we raise our glasses in a toast to our beautiful family. You all give us the strength and courage to move through this most difficult time. Salute!

 

Thursday, June 29

Today has been a fine day! Nausea and fatigue is down, short but satisfactory work-out, perfect summer weather, few obligations and the prospect of departing Eugene in the morning for our 2017 family reunion commencing Saturday in Whistler, BC. Additionally, I was almost successful in completely taking the day off from dealing with ‘cancer stuff’. What more can I say?

We continue to be in the midst of researching experimental clinical trails, hoping to come up with something with a reasonable chance of success by mid July. As we do so, we are painfully reminded at every turn that my disease is extremely tenacious, aggressive and serious.

 

We try to stay strong as we: Prepare for the worst, yet hope for the best!

Monday, June 26

Laurie and I have had almost a week to process my current health news – Dr. Beer is out of options.  Although it is not what we would choose, it is the reality and we are ready to pick up the pieces.

Since that long, hard day at OHSU last Tuesday, we celebrated my 61^st birthday. Laurie, Corrine and I ventured to a place only 65 miles from home where none of had ever been before. We launched a canoe into Siltcoos Lake, paddled to the Siltcoos River outlet en route to the breakers of the Pacific Ocean. The lazy water, huge Sitka spruce, twisted shore pines and the myriad of birds were simultaneously stunning and relaxing. Soon we had broken out of the forest into the huge sand dunes – snowy plover habitat. Immediately we witnessed the majesty of a gigantic bald eagle lifting itself into flight from an ancient beach post. We continued paddling for a few hundred yards, but quickly realized the gale force winds would be just too much for us to overcome to gain access to the true ocean. Perhaps this is the lesson of my present health state – yield, accept and mold to what my journey now offers? We walked a bit, turned around, found a glorious spot on the dunes in the sun, lunched, napped and bonded. It was one of those extremely special, harmonious human/nature-interfacing experiences. By early evening we had paddled back, hoisted our canoe from the lake and were enjoying the sunset on Cleawox Lake among the huge green coastal trees and giant sand dunes. Laurie heated up some dinner, they polished off a bottle of good Italian wine and we continued to revel in each other’s company and nature’s grandeur. The old reliable VW van whisked us home after dark and we snoozed comfortably in our bed that night!

Also since that long, hard day at OHSU, Laurie and I have spent almost every minute together. The time has been filled with intense, real conversation and many a tear. The result is a most incredible, deepening, loving, all-consuming relationship between us. It is truly a most wondrous, beautiful thing – one that I could simply not have even imagined just a short time ago! The tribulations of life have a curious way of freeing us to feel the truest human experience.

Presently, Laurie and I prepare for our huge; much anticipated family reunion in Whistler BC. We depart Eugene in four days. Over the next two weeks we will also be traveling to three major domestic cancer research centers (Portland, Boston and San Francisco) to gather experimental trial data to discuss with Dr. Beer. Come mid-July we are determined to have a plan – whether it is active or passive we will know soon enough – but in either case it is time for us to move on. In the meantime, we anticipate enjoying each and every magical moment of each and every day that life offers us and to roll with its punches.

  A simple Happy Birthday, Mike

Wednesday, June 21

Yesterday, I awoke early and pain free – no severe upper back pain, no stomach issues (nausea, blotting, heartburn), no muscle cramps, even a lessening of that ubiquitous fatigue. My world felt pleasantly different!

By 8:30 pm. yesterday evening, Rich, Laurie and I had returned from an extremely intense, prolonged day at OHSU. Based upon the 8 am. blood draw data; Dr. Beer told us that the current chemotherapy regime was failing. He informed us of another triple digit rise in PSA and the doubling of 3 key liver enzymes. Emergency Bone and CT scans were ordered to confirm this and help Dr. Beer pivot so as to recommend yet another treatment. Bone scans showed new tumor progression within the left iliac bone and pubic body. CT scans showed two enlarged nodules in the lungs, three enhancing bladder masses and most devastating, “marked interval progression in innumerable masses throughout the liver.” I read this as 4 enlarged (up to 5 x 4 cm) rapidly growing tumor masses in various parts of the liver. Finally, some soft tissue metastatic disease was identified around the L2 vertebrae.

Perhaps the most telling part of the morning was seeing the disappointment on Dr. Beer’s face as he related the news, the breaking in his voice as he told us that there is only one more recommended chemotherapy regime (which we started yesterday) and the sadness in his eyes when he recommended that we investigate clinical trials at other cancer research institutes.

I woke up early this morning to digest my rapidly changing situation. I reluctantly canceled my City of Rocks trip with my climbing friends. I feel like I need the time to reach out and schedule appointments with USCF, Dana Farber and Providence. I also am worried about the unknown side effects of this new, more potent chemotherapy drug. Finally, I think it of ultimate importance that Laurie and I spend these trying times together in support of each other!

I continue to marvel at the efficiency and compassion of all the folks at OHSU. I also continue to be eternally grateful for the outpouring of support and prayers from all my friends. I will maintain a thread of hope no matter how dark it may sometime seem.

* My dissonance arises from how I felt yesterday morning as compared to the unfolding news of the day.

Monday, June 19

I feel like a 12-year old Little Leaguer who has just struck out in the most embarrassing manner because I had experienced my first set of curve balls. You think you know almost exactly what to expect based on thousands of previous trips to the plate and suddenly a brand new breed of pitch comes hurling at your head. You crash to the dirt and magically the pitch makes a left hand turn, drops into the catcher’s mitt and the ump echoes: “Strike!” You rise from the dirt, dust off and wonder what just happened? You notice the sly grin on the pitcher’s face and you know, he knows, your team knows, their team knows and the entire crowd knows that in two more pitches you will be called out on strikes! You are helpless to the new forces in life………………until you can adept!

This metaphor illustrates how I’ve felt over the last 3 weeks – my second chemotherapy round of summer 2017. Based on my previous seven rounds of therapy I most certainly did not expect this surprisingly difficult time, the details of which I shall spare you.

Tomorrow we are off to OHSU for blood tests, a consult with the oncologist, an infusion of more cytotoxic chemicals and hopefully a change in pharmaceuticals to combat this curve ball. If relief does not come from the western side, perhaps, Zach, my eastern healer can sneak in something later in the afternoon. If not, I’ll bank on the prospect of unlimited fun and relaxation with my climbing friends over the next 7 days as we set up camp at the City of Rocks, outside Almo, ID.

Oh the twists and turns of life……………some more pleasant than others, but always bolt to bolt!

Wednesday, June 14

My cancer journey is now 16 months running. Undoubtedly, there has been an incredibly vast number of unselfish, compassionate supporters who have rallied to walk stride for stride with me. In this post I choose to highlight one of these amazing people.

We have known each other for a lifetime. This fact precludes me from relating a full list of his awesomeness, as there is insufficient time and space. Suffice it to say that we have skied, backpacked, hiked and climbed mountains together. We have traveled together – traipsing the jungles of Costa Rica and the ruins of Tikal, as well as driven across the American continent twice. We have played countless hours poker together. We have shared in numerous childhood pranks and supported each others outrageous stories. We have been baseball and basketball teammates for our entire lives. We have even built a house together – from top to bottom!

We have shed tears together while burying two parents!

That was then and this is now. Presently, I am fully convinced that my brother, Rich, would do ANYTHING in his power for me! I mean ANYTHING! He is fully and genuinely dedicated to my well-being. He so desperately wants me to be pain free, cancer free and healthy again! I see in his eyes a suffering of helplessness as he navigates that tricky place of respecting my space and making sure he visits to comfort and stay close. He always unselfishly walks down to spend quality time with me. I list only a few of the many things where he has been so very helpful: assisting with the settling of Aunt Joan’s estate, coordinating family visitors, relating to softball and poker folks, organizing outings, listening to me when I am down and visiting with my mother-in-law. He never fails to check in after every OHSU visit and has written numerous letters to boost my spirits including the very first entry in Laurie’s book.

Simply put, I cannot imagine my life without my brother Rich as my perpetual wing man. I am forever grateful for his dedication! I often wonder if our rolls were reversed if I could be as dedicated to him as he has been to me. I wonder?

Thank You Rich!

Thursday, June 8

It has now been nine days since my second chemotherapy infusion of Summer 2017. Initially, I struggled with a fickle stomach, unable to really enjoy food and that omnipresent, deadening full body fatigue. Presently, I feel a little better and seem to be hanging in there. I attribute this to modern pharmaceuticals, an adept acupuncturist, an undemanding daily schedule and tremendous support from Laurie. I believe I am through the worst of it.

Last weekend, Laurie and I shared a marvelous three days with our dear friends Tim and Pam in Central Oregon. We dined, hiked, exchanged stories, did crossword puzzles and even climbed at Smith Rock together. Upon arriving home, Laurie and I are loving the calm, relaxed, tranquility of our home.

 

So life continues for us – day by day…………

Friday, June 2

A guest editorial…………………………………………………

Have you ever seen how excited kids are when they see Mike? They run into his arms, so happy to see him feeling incredibly special and important. Mike encourages treats them with respect, gives them his full attention and encourages them to do their best- an incredible skill. Mike is the quintessential teacher! He has influenced so many kids: siblings, stepchildren, nieces, nephews, friend’s kids and certainly thousands of middle schoolers. What kid doesn’t want to play, play and play some more, with Mike?

Every once in a while, when we are out and about: downtown, at dinner, grocery shopping, riding our bikes or at some event, I hear a yell “Mr. Heil!” I refer to these as “Mr. Heil Moments!” Two of my favorites stand out:

A father with tears welling up in his eyes…….I can’t thank you enough for giving my daughter the confidence to do math, it has built her self-esteem incredibly.

A genuinely excited middle school boy…….It’s not every day a kid wants to introduce his buddy to his middle school math teacher at the Oregon Country Fair.

Many of the kids he inspired over the years are now adults, starting to have kids of their own. I asked some of those “kids” to write a little something to explain how Mike has been an influence in their lives. The response was incredible! I compiled all of these replies into a picture book which I’ve attached here as a PDF. (click here)

I recently gave this book to Mike. We rode our bikes to the river, sat on the grass in the warm sunshine and he read the whole book out loud to me. He was blown away! We cried, we laughed and were incredibly touched by what everyone wrote.

Unfortunately the PDF doesn’t have the same elegance as opening a book and turning pages, nonetheless all the text and photos are there for you to view. As you scroll down keep in mind that the same color pages are side by side in the book.

For those of you who still want to contribute and a get Mike a message, please email it to me with a photo or two (lauriebernstein@hotmail.com). I’m thinking volume 2 is already in the works.

While creating the book I started to think how Mike has influenced me over the last 17 years. As we’ve lived together he has challenged some of my habits and helped me grow in many positive ways. I am truly happier being the person I am because of him. Most importantly, he has taught me how to love. Under his influence we have created an incredible relationship, something neither of us ever takes for granted.

 

How lucky I am that he chose me!!!

I love that guy!
-Laurie

Tuesday, May 30

It has been a long and tiring day for Laurie and I – up at 5:15 am, 6 hours at the healing center and 6 hours of driving. I had the standard blood draw, a check-up and consult with Dr Beer’s PA, Allean, a consult with the pharmacist and then the double infusion.

The hard data reveals another disappointing rise in PSA – a new record high of 217. However, this represents only a 13% increase over the last 3 weeks, compared to an average of 103% increase over the last 4 months (see graph). The second piece of hard data indicated that 2 of the 4 liver enzymes continue to increase to the point where I needed special permission today to even receive the infusions. No scans were taken, so no new data on tumor size is available.

Even before the PSA data was in, we had a frank discussion with Allean who assured us that a small increase or decrease in PSA data would not be telling. After only one treatment, it would not be prudent to draw any conclusions. This is consistent with Dr. Small’s (UCSF) adage of never, ever, ever, ever rely on one piece of PSA to determine a change in treatment. Also, Allean fully assured us that I seemed in very good physical condition and we seem to be doing everything in our power to respond to this disease. The burden of cure is in their hands.

This makes me think of the serenity prayer:
“Grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
    And wisdom to know the difference.”

We continue to live by the maxim, one day at a time or in climber’s terms: bolt to bolt and hope for a better day tomorrow!

Saturday, May 27

I think I have been here before – summertime chemotherapy!

It has now been nineteen days since my first chemotherapy infusion of this summer. In two days I will start the pre-chemotherapy drug regime (steroids and anti-nausea medicine) and then the next day I’ll receive infusion number two. In some respects this brings back memories of last summer, but in other respects it just is not quite the same. It is hard to put my finger on it, but this time around it seems more real, serious, filled with a lingering doubt. I thought I would be an old pro at this, but that does not seem to be the case.

One big difference is last summer I vividly recall waking up most mornings to a cool summer breeze, birds chirping and an energetic anticipation of an awesome day. My eyes would simply pop open and I would be psyched to experience the unfolding of my new day. So far, that feeling seems to be keenly lacking. A second huge difference is my inability to get my stomach completely correct. I can and do eat, but often it is touch and go and hardly ever do I feel 100% even after consuming the most desirable meal. A final difference, this one being very positive, is the absence of that debilitating anxiety resulting from the withdrawal from the steroid medication – remember the stories about crying in the market or losing it completely with the inability to light the BBQ? So far nothing of the sort!

One similarity is the extreme fatigue. Recall the “biking uphill, against the wind, with brakes dragging”, or “walking about with the huge truck tire chained to your waist”? It’s back!

All this said, there continues to be no better feeling than sharing the energy, enthusiasm and love of life of our visiting youth. First Zach (age 10) and Jacob (age 8) and then Corey (age 21) and her two dynamite friends come to stay and share with us. They brought me untold joy and fun despite the trials of summertime chemotherapy. On that note, a gigantic thank you to Rich, Steve, Katie, Rhonda, Orion and Tommy for helping absorb some youthful energy and allowing both Laurie and I much coveted down time.

Presently, we are at the beach house in Manzanita with our fabulous friends, Manfred and Susan. We are blessed with warm sunshine, wind blown negative ions, crashing wave sounds, delicious food and lots of laughter. Life is good – one day at a time!