Author: MichaelHeil

Saturday, May 20

Laurie was especially happy this morning when I reported that my morning weigh-in revealed that I had gained roughly 5 pounds over the last four days! Of course, she (and the doctors) want me a little chubbier to deal with this summer’s chemotherapy treatment. I just as soon stay a little trimmer in hopes of continuing hard climbing for at least another month.

Not withstanding though, I think my sheer joy over the last few days stem from the fact that I CAN now EAT again! Acupuncture, time, the miracle of modern anti-nausea medicine or old wives tale remedies – I don’t care – I am back on the food track and loving it! Interestingly enough one of the two more potent anti-nausea drugs prescribed earlier this week, namely Zyprexa, is an atypical antipsychotic. Thus perhaps my current euphoria might be induced by drugs, by gorgeous weather (it has been 75 degrees and sunny), by the upcoming full-on play visit of my 8 and 10-year old nephews, by the natural receding effects of chemotherapy or by being totally in love with Laurie! No matter, I’m back and loving it!

Once again, my deepest, sincerest thanks to ALL of you for the heartfelt wishes and prayers over the last two weeks………..Be fully assured they helped us weather an intense, rocky storm. Now back to the task of lounging around in order to deal with the incessant chemotherapy fatigue and preparing for my next infusion at month’s end.

Oh, the journey of a lifetime continues with such vast oscillations. Simply Amazing!

Wednesday, May 17

With my own sense of amazement and awe, I think I am beginning to more fully understand the horrific impact that real chemotherapy has on the human body. This new double dose regiment has really flattened me. I truly believe that now I can sympathize with the millions of people who have gone and continue to go through this daily.

Up until this morning my biggest problem has been an incessant, intense nausea. I had anti-nausea drugs but they were useless – rolled over like the huge ocean wave on your sandcastle. Laurie and I tried everything we could think of ranging from grandma’s folklore to Internet miracle cures. On Sunday night, it was so bad that the only thing I could hold onto were the “Hang in there, Mike” messages I was receiving from all of you.

After yesterday’s emergency, lengthy acupuncture session and a consult with nurse, pharmacist and oncologist leading to two new anti-nausea drugs (big guns as Laurie now refers to them) I am beginning to feel ever so slightly better – a move toward normal. During the whole time I had the Joni Mitchell song “Big Yellow Taxi” stuck in my mind. I was focused on the chorus: “Don’t it always seem to go, that you don’t know what you got till its gone” – the simple ability to eat food.  I was willing to trade an even more debilitating fatigue for a stomach able to handle even the slightest bit of sustenance. I was wiped out!

The good news:

– Finally, today I feel a little better and have eaten three minuscule meals.
– I do not seem to be burden with the anxiety and panic, which I had felt so strongly after my chemotherapy sessions last summer
– I have the luxury to sleep, sleep and sleep some more whenever that crippling fatigue rears its ugly head. It is truly amazing how slow I walk, how steep the hills feel and how many ordinary citizens pass me on the bicycle.

I sure hope the tumor cells are struggling at least as hard as I am on this new, real meal deal chemotherapy.

 

 

Seeking tranquility among the BIG tress!

 

Sunday, May 14

To all you mothers out there, I wish you the most Happy Mother’s Day.  The job you do and have done is ever so valuable for us all.  Thank You!

 

 

 

MOM, I SURE MISS YOU!

Saturday, May 12

The last few days continue to be extremely difficult for Laurie and me. We try to summon up the energy to crawl out of this hole, but find ourselves continually turning inward to seek the comfort of one another. We embrace, we kiss, we hug, we cry. Our feeling of sadness is far keener than that of anger.

 

We have spoken with some of you and have received a deluge of heartfelt, warm, touching notes to which we know not how to respond. We, too, feel the helplessness with respect to this ravaging, relentless disease. That said, your support has been fantastic and no matter what you do, it is the right thing to do! We undoubtedly, feel the LOVE.

I thought I had a good feel for dealing with the physical effects of chemotherapy. Regrettably, it is certainly more difficult this time through. Perhaps, it is due to the fact that I now am being dosed with the same Taxotere, plus a stronger cytotoxin agent, Carboplatin. Additionally the 8 doses of the glucocoriticosteriod, Dexamethasone, have its nasty effects. A viciously dragging fatigue is my main issue, but so is a nagging nausea and some minor bone pain.

Presently, I am scheduled for 4 more chemotherapy infusions spaced three weeks apart. This will take us through August 1. We are not sure if we will have a hint of this treatment’s efficacy until at least the third treatment (6/20). Thus we are reevaluating our summer plans in this light with our priority being our family reunion and Tanya’s family vacation.

In the meantime, there are some rays of HOPE, on which I will elaborate next time. Until then, thank you for everything you offer us – you mean the world!

 

Faking it!

Tuesday, May 9

The incredible highs and lows of this journey continue.

After a most wonderful all day adventure with Chris on the new climb, Dodgeball, at Red Rock, I dropped him at the airport on Sunday morning (10:45 am.) and started the two-day drive to OHSU. After a chilly campout on Sunday night in the mountains just north of Susanville, I swung by our house for a bite to eat, a shower, a quick repack and Laurie. We were off to a 2:15pm blood draw and CT scan in preparation for today’s appointment with Dr. Beer.

Both Laurie and I had severe doubts about the efficacy of the most recent PEMBRO trial, not to mention the efficacy of all three of the androgen deprivation therapy drugs over the last 9 months. A few hours ago our fears had become fully realized. Slammed!

Dr. Beer gloomily reported a PSA rise of 170% – a new record high of 191! Also reported were scans showing a wild wide spreading of my cancer, lesions of various size in my: lung, liver, bladder, prostrate, seminal vesicle, rectal wall, abdominal cavity, lymph system, vertebrae and pubic bone. Worse still, we were told there is significant compromising of liver function! Once again, this confirms that my particular strain of prostate cancer is extremely aggressive and resistant.

I sit now in an infusion chair where I was to receive my third infusion of the immunotherapy drug PEMBO. Dr. Beer has pivoted drastically. We are bailing on the trial and reverting back to chemotherapy to zap those invading cancer cells – a more aggressive chemotherapy. I await my first infusion now!

Admittedly, I feel a little angry, but more sad. Sad that Laurie needs to be further dragged through this dark ordeal and sad that I must report this news to you. I do not regret any of the decisions we’ve made thus far. I continue to be impressed and confident in my team’s dedication to my treatment, not to mention their sincere empathy.

Presently, we are trying to embrace a feeling of HOPE!

Saturday, May 6

I’ve had so many awesome adventure days this past week. These days have been filled with an almost perfect mix of excitement and nervousness. I have tested my limits with intense, sustained physical exertion. I have developed a unique, heartfelt camaraderie with the person on the other end of my rope. These days have brought an unsurpassed joy to my soul and a soaring spirit that I feel incapable of expressing in words. I could not be happier with my time in Red Rock Canyon. It has been off the charts amazing in all respects.

Presently, I find my body blissfully tired and quite ready for the soundest of sleep. I will parse out my trip a little more fully in a near future post, but for now be very well assured that I am most happy and content as my daily spring climbing expedition days draw to a close and I return home to take on the task at hand.

Except for one thing, I fully believe that I must be the luckiest man in the world. Indeed, I am truly blessed!

Monday, May 1

Despite the fact that I have been away from you all for over a week now, this will be a brief post.
For the past week I have been lost:
– in a wonderland of red rock canyons, deep blue skies and warm sunshine.
– for the words to truly describe this most incredible climbing adventure.
– trying to generate the gratitude to my climbing friends for allowing me this experience.
– finding time to make this post. We hike for hours, climb till late, eat together, tell stories, prepare for the next day of climbing and fall soundly into bed.
– figuring on what body part to put the ice pack at day’s end.

Perhaps the only place where I have NOT been lost (so far) is where to set that next piece of protection to safely continue that climb.

 

PSA be Damed – We are going CLIMBING!

Monday, April 24

Let’s return to last Wednesday when Laurie and I were at OHSU to consult with doctor and trial coordinator, as well as receive the second infusion of Pembrolizumab. As we listened, it was made perfectly clear that the initial results with this treatment may not be impressive. The drug is different then chemotherapy drugs, in that it is not designed to specifically and immediately kill rapidly dividing cells, instead it is designed to assist my own immune system in battling the cancer cells. They said this might take time.

For the past year, we have been programmed to monitor my PSA. We know there are other indicators of tumor activity due to prostate cancer but PSA is very reliable. So, you all might not be surprised at our thundering dismay and utter shock and sadness when we logged onto the portal that afternoon and learned of the newest PSA reading – a whooping 70! Yes 70!

Are you kidding me? Another doubling after only 3 weeks! Isn’t this where we were last year at this time……. but now we are on the 4^th therapy. I know we were told not to expect immediate stellar results, which Chris confirmed with Laurie after checking the portal that afternoon, but 70 and a very nasty trajectory at that! I don’t like this one bit!

From last week, there you have The rest of the story!

 

 

Friday, April 21

Laurie and I returned from OHSU on Wednesday afternoon both physically and emotionally exhausted! That said, all went as expected – blood tests, doctor exam and infusion all progressed smoothly.  The doctor, as well as the trial coordinator assured us that the intense fatigue, which I’ve been feeling, is normal. They suggested I continue moderate exercise but listen to the body and get sufficient rest. This theme of listening to the body and getting rest has been echoed by many of you, including, Julia, Annamarie, Chris, Laurie, Zac, Allean………

The next morning I went to an early morning appointment with Zac, my eastern healer. He worked on supporting the immune system, we spoke of appropriate rest and off I went on the 2-day drive to Red Rock.

Be assured, I am fully convinced of the importance of rest and am committed to listening to my body at every turn! In matter or fact I have a plan for the next 18 days. I do not plan on climbing every day, nor do I intend to attempt more than one multi pitch climb per day! Those days I do climb, I’ll hike to the climb, spend 30 minutes or so at the base, resting or napping, and then send the climb. My send will be slow and steady – never rushed. I plan on enjoying each and every move on each and every climb! So is my commitment to myself (and Laurie). Nonetheless, she did insist, as I drove away yesterday, that she would sit on my right shoulder overseeing the entire adventure, as a supportive teammate.

Two gorgeous views on today’s drive

I am very excited and a little nervous!

Tuesday, April 18

Tomorrow morning we are scheduled for yet another pilgrimage to the clinic at OHSU. The routine will be blood tests, doctor check-up and the second of four infusions of this immunotherapy trial. We should get an initial feel as to how successful the first infusion has been in assisting my immune system to keep those cancer cells at bay.

We had committed to view this as our job, so tomorrow will be merely another day at the office, day at the job site or meeting with the boss. A bonus for us is the fact that we get to work with our wonderful colleagues at OHSU – happy, helpful, compassionate and efficient.

Now the reality coming from within me: I wish I felt more optimistic about tomorrow. Last summer each pilgrimage to OHSU for our chemotherapy treatments yielded stunningly successful results. Since then both subsequent treatment regimes have been disappointing. I wish I could get excited about anticipating a positive result tomorrow.

Conversely, the day after tomorrow, I plan to depart Eugene for the 2-day drive to Red Rocks Canyon National Conservation Area. Over the course of 18 days my climbing buds, Dave, Alan, Bob and Chris will rendezvous with me to hike deep into the canyons seeking out long, multipitch climbs on perfect sandstone cliffs – all day affairs! Talk about excited and full of anticipation – Indeed!

Admittedly, my only concern is: Will the body be able to able to hold up to the fatiguing effects of this intense drug assault?  As my Guatemalan friends would say: SABER (who knows)? In the meantime: Capre Diem!

Saturday, April 15

Recently, it seems that I have been on a subconscious quest for normalcy in my life. Despite the fact that a ‘normal life’ might be extremely hard to define – I seek it nonetheless. Perhaps a normal life is when one does not feel forced to schedule an untold number of medical appointments over 100 miles away from home. Maybe it is not constantly thinking of whether your body is capable of this or that physical exertion or what the next PSA reading will be or what the next scan will show. Maybe it is a freedom from concern as to whether cancer cells really feast on sugar or alcohol or are nourished by this or that food. I suspect most people with normal lives do not think regularly about liver enzyme or TSH-Thyroid Stimulating Hormone levels, white or red blood cell counts, yes or no on PD-1, this vitamin, that supplement, enough sleep last night, more meditation, a nap….………..

Now mind you, I don’t mean to make this out to be an obsession, but the reality for me (and Laurie) is that since I had been diagnosed these issues are usually not too far from the surface in our lives. Either this is real OR  we simply have too much time on our hands. Nonetheless, I seek normalcy.

That said, I returned from a fabulous get-away in Pendleton with brothers, nephew and uncle on Monday past. As you, the reader, must have surmised, the value of quality family time in my life simply cannot be overstated. This get-away was marvelous. We had wonderful conversation, dinners, exercise, card games and hang out time!

Before leaving for Pendleton, I had started a large yard project that Laurie and I had planned. It was a normal thing – a springtime revamping and replanting. Upon returning, we resumed this project. I suspended all climbing training and we worked four days straight together. We dug up roots, moved soil, sculpted a berm, hauled in leaves, moved some existing plants and ordered new plants. It was a gigantic amount of fun to create together. At each day’s end we cooked dinner together (well mainly Laurie cooked, as I was quite tired) and ended cozily together in front of a movie. Last night, was the best, as we shared one of our favorite bottle of Russian River Pinot Noir over a scrumptious Italian dinner. We then splurged and went out for a decadent, rich chocolate, raspberry tort from our local patisserie accompanied by my favorite chocolate ice cream from our time-honored heladería.

 

As I reread this post, I realize that perhaps this is not so normal –—- yet quite delicious. Still, I do not feel compelled to change the title, as life is grand so long as I can stay away from over analyzing the severity of my condition.

Thank you all for listening………….

Monday, April 11

The second two weeks of April are filled with dubious anniversaries for Laurie and me. On April 11, 2016, one year ago to the day, I received a call informing me of the sobering results from the prostate biopsy of a week ago – high volume, aggressive cancer, Gleason Scale 9. Also this week, one year ago, there was my desperate exchange of emails with Manfred and Susan calling for help  (attached), the news that my cancer was metastatic and my acceptance into the Knight Cancer Institute for treatment. Next week’s anniversaries include my first chemotherapy treatment, Orion’s 21^st birthday BBQ and settling in at home to a new life – a life with cancer.

This all seems like a lifetime ago! Occasionally it still seems a little surreal, but by and large we’ve accepted this bewildering twist of fate. We do wish it were different, however we know it is here to stay. We are prepared to continue this journey through the rest of our lives together and go wherever it may lead us.

Over the last year, Laurie and I have experienced a tremendous amount of varying, intense emotions – not the least of which has been an overwhelming outpouring of love from all of you. We cannot overstate how valuable this has been for us. Your love has most certainly enhanced our lives in many more ways than you can ever imagine!

We have also learned so much over the last year. Perhaps the most valuable lesson has been to continue to live our lives as normal as possible. We strive to seize each day and live it with gusto, but not as if it were our last day. We try to take advantage of each and every opportunity for fun and laughter, but not over commit ourselves thus adding stress to our days. Most important of all we never, ever, ever, want to take each other for granted!  This has been a foundational commitment to each other ever since we started our relationship 17 years ago and has only gotten stronger since my diagnosis of a year ago.

One year later, Laurie and I are grateful for so many things, not the least of which is that I am still standing, walking, running, skiing, climbing, cycling, playing, laughing and smiling.

We continue to work and hope for the best.

Happy Days………..

Monday, April 3

How bad can it be when my favorite 6 year old, Hayden, comes running across the street  early in the morning with a huge smile and excitedly exclaims: “……and I knew it was you, Mike. You put up the signs and balloons on my fence. I remember from last year when I was five……….”

 

The joy and innocence of youth continues to be a powerful, rewarding, happy force in my life. I think back 45 years when I first experienced this. I then count forward through the years and remember all the solid relationships I have built with innumerable kids. The spontaneous, genuine, carefree, cheerful experiences I have shared with them all rings strong for me. I say, how bad can it be, to have Hayden join this team?

Thursday past was my first Pembrolizumab infusion. This is the clinical immunotherapy trial for which Dr. Beer has such high hopes. I see it as the fourth phase of western medicine treatment, the last two of which have not been very successful. Nonetheless, I am thankful to have qualified for the trial and hope to see positive results. The actual infusion went well and after four full days, there do not seem to be any severe side effects. So again, I say: how bad can it be………?

Finally, I ask, how bad can it be when college friends of 40 years ago come to share time, stories and create new memories with me.  Having my brother Rich and two nephews amongst us made the weekend even better. Oh Yea!

Wednesday, March 29

The rosy picture I painted in my last post about the biopsy continued through early Saturday morning. Lana, June, Laurie and I had a great Friday, including a robust hike in the morning, a visit from Lynn in the afternoon and a delightful, nostalgic evening party organized by Katie and hosted by Dolly.

Unfortunately by midday Saturday all came tumbling down! On our hike, a striking pain developed at the biopsy incision site and radiated inside and up into my right shoulder. It was not quite debilitating but surly intense. I had not experienced pain like this in any course of my treatment over the entire year. I could not even finish the hike and asked Laurie to get the car to pick me up.

Our dear friend, Marya, the nurse, just happened upon us with her car and in a matter of minutes I was laid out on our window seat, heating pad set and being soothed by both her and Laurie. Marya determined that internal bleeding was unlikely and then coached us on some medications. I was down and out for hours. It was nice to be distracted by the Ducks victory over Kansas as they advanced to the final four and then a scrumptious dinner prepared by Lana and June. Otherwise this boy was down and out!

Except for two very puzzling, perhaps unrelated, episodes of extreme vertigo early Sunday morning, I started to feel better and better. Sunday, Monday and Tuesday passed with minimal exertion. Today, it felt so wonderful to slowly cycle over to the gym and climb real easy.

 

My recommendation to all is: if you are faced with the prospect of a liver biopsy, which I hope you never will be, take it seriously! In the meantime I’ll share what Laurie and I found on a spontaneous easier walk on one of the minimal exertion days…

 

Friday, March 24

Yesterday, unfolded marvelously for Laurie and I!

We had driven to Portland the day before via Salem, where Laurie passionately testified to a group of Oregon State senators for the passage of Senate Bill 892. We arrived Portland in time for a festive Swiss dinner put on by Manfred and family, which lasted well into the evening. It was especially good to visit with Julia, Diana, Eric etc. and share in the stories and lives of these fabulous, fun-loving, adventurous friends – young and older.

Thursday morning started early – 7 am liver biopsy appointment at OHSU. By noon I had taken my final pain pill and was preparing to be released. The biopsy itself was challenging, as the lesions were small, deep, well hidden and very close to my kidney. Eventually the team of two doctors decided to go in through the ribs with an 11 cm. needle. They were able to extract 3 cores, not the six they would have liked, but sufficient for me to qualify for the immunotherapy trial. There seemed to be no complications whatsoever – once again a credit to the entire staff at OHSU.

Laurie and I experienced a shared joy and relief – something we have felt over and over again on this journey. We bonded deeply over this as we drove back to Eugene, until the drugs finally put me into a deep, restful, recuperating sleep.

The day culminated for me, as Lana and her partner, June arrived at our front door for a four-day visit. I was so excited to see Lana and have not been disappointed! Visiting with her always makes my heart soar, rekindles timeless memories and fosters laughter at every turn! I retired early and exhausted. I feel asleep with gratitude for how my day had unfolded!

 

More to come on the new phase of my treatment –immunotherapy – in the next post.