Author: MichaelHeil

Thursday, March 23

A New Day:  Let’s see what wonderful events unfold!

Sunday, March 19

Laurie and I have just about accepted the disappointing news of this week and mustarded up the resolve to move on. Before doing so, I would like to acknowledge two wonderful things:

– The overwhelming, heartfelt concern and support of our friends has been absolutely incredible. We definitely feel the LOVE! You’ve expressed it in so many ways, unique unto yourselves. Be perfectly assured we feel it and it means the world to us! Thank you all so very much from the bottom of our hearts!

– Once again the support, compassion, empathy – not to mention the efficiency and professionalism – of all the folks who serve us at OHSU has been simply out of this world. At every turn, we get what we need and our lives are easier for it. Thank you to ALL at OHSU!

Laurie and I will now reset and do what we can to qualify for the immunotherapy involving the drug Pembrolizumab. Ironically, the biggest hurdle might be that the visible liver lesions are too small to biopsy. If so, we will not qualify. All along, I’ve been rooting for those nasty sites to disappear; now I learn that they must be large enough to biopsy. Odd? Perhaps, one doesn’t really know a good break from bad until time plays out. Nonetheless, we are off to Portland on Thursday to find out.

In the meantime, Laurie and I took time out to bond and relax. We went on a special trip to a special place today. We skied alone to Fawn Lake, up in the Diamond Peak Wilderness Area – the site where we got married 7 years ago!

Day by day we continue on!

Tuesday, March 14

Today I learned that the new, fancy, expensive drug (Enzalutamide) that I have been taking for 2 months is NOT working.  It simply is not able to keep those cancer cells in check as evidenced by a significant rise in PSA (from 12.2 to 20.9 in 5 weeks).  Dr. Beer said, “There is no question that your cancer is more persistent and aggressive than most……”

Both Laurie and I were devastated. I found myself staring out the 7th story window of the Cancer Clinic at OHSU into the gray drizzle and tearing up upon hearing the news. I had so hoped for a continued reprieve in doctor appointments, blood tests, body scans and most importantly, fretting over next step treatment decisions. Presently I am just plain sad – I miss a normal life!

The recommendation is to move into the domain of experimental medicine (an immunotherapy trial). That we shall do. We met with the trial coordinator and signed the consent forms this afternoon. Blood was then drawn and will have scans tomorrow to see if we qualify. Perhaps a biopsy next week?  Maybe my first infusion by month’s end?

This journey of ups and downs continues. I wonder what I will learn tomorrow or the next day. In the meantime, I recommit to living my days to the fullest, embracing each and every emotion and reveling in the joy that Laurie is always at my side.

Saturday, March 11

I truly believe that I was blessed with a wonderful childhood. It was innocent, fun and safe. I had tremendously attentive adults in my life to guide and mentor me.

One of my most favorite family events was when I would learn that a large group of relatives were planning to visit our small suburban New Jersey house and spending the night. I was never sure exactly who these relatives were or how they related to one another. After all, the maternal side of my family was always sponsoring immigrants from the old country, Malta. All I knew was that the weekend was going to be filled with spirit, fun and food. Spontaneous festivities would always continue late into the night!

Now my favorite part of these favorite family events was when I could find a secluded corner and quietly listen to the myriad of fascinating, gripping, riveting, intriguing, seductive stories. Every kind of imaginable story would be told and retold with few topics off limits. I now realize what a superb group of storytellers my family produced. Often I wonder if they simply refused to let the truth get in the way of a grand story.

These weekends were a gigantic highlight of my youth! However, when I was about 9 years old, as one of these weekends were coming to a close, I had a very sad realization. I vividly recall that all these animated, fun-loving adults, whom I admired, had their own compelling stories – and I had none! I had no stories of my own! I was close to being depressed for weeks on end and thought deeply about this. I struggled and finally realized the reason why I did not have stories of my own was that I was only 9 years old! Eureka, I felt so much better with this realization. I concluded that as I got older I would have stories of my own! Yahoo!

Perhaps it time for me to come to the point of this post. Twice in the past four days I had the opportunity to tell my story to a captive audience. My story being: The Human Perspective of Cancer. My dear friend Alan, asked and made space for me in his University of Oregon Biology of Cancer class to tell this story to his 150 or so students. Now mind you, this is not the story I would of dreamed of telling as a 9 year old, but life has its twists and turns and this is the story that has resulted. It felt real good returning to the classroom and especially good to find the students so interested. They seemed engaged and inquisitive and their questions were sincere and well formed.

Just last night I offered up the details of my story again to a set of ten dear friends with whom we rendezvous every year about this time in Kokanee Lodge. Of course, I had been in touch with each of them, most personally, yet somehow the stage set itself for details, both current and past. Their empathetic feeling was incredibly strong and I felt strengthened by the power and love of my community. Again, not quite what I would have expected as that 9 year old so many years ago…………..but so goes life!

Tuesday, March 7

During a lull in conversation on our casual walk on the golf course and through the forest this morning under my umbrella, I had a wonderful epiphany. It was: I like my life! In matter or fact I really like my life!

I thought about the marvelous dinner date Laurie and I had with Rich and Kay last night. The conversation was lively, fun and real. I learned that we both were very much looking forward to getting together and sharing with each other! I also thought about how I had received so many concerned responses to my last post. I now act with a guardian angel or vigilant owlet on my shoulder as I more carefully mange my physical workouts. I thought about Alan’s note, which touched my heart as it ended: “I still want you and Laurie over ..………… I do not want to add any stress!” I thought about the immense amount of free time I have. I thought about the beautiful relationship Laurie and I have and the balance that exists in it. I thought about the joyful fact that Lana is coming to visit sooner than later. I thought about how excited I am to be healthy enough to train for spring climbing and that my friends will be meeting me in Red Rocks soon. I thought about the happy conversation I had with my sister this weekend past, who seems to be rapidly recovering from her health challenges. I thought about cycling in the Julian Alps with my other sister and brother-in-law this coming fall!

Of course, just like everyone else’s life, mine is not perfect. However I must say how clear it is to me that: I really do like it!

Friday, March 3

This past week has been especially engaging, both socially and physically. We’ve spent wonderful time with our peeps – Alan’s birthday party, Beyond Toxics fund raiser and multiple days with Susan and Manfred. I’ve climbed regularly with Bob, Laurie, Linda and Jane, enjoyed a gorgeous ski day and did some very arduous yard work with Sam! I am even back at it with Cole as his pre-calculus helper. Busy but Fun! Perhaps this is my quest for normalcy in my world of a very unsettling disease.

Unfortunately, I continue to be dragged down by extreme physical fatigue. My muscles seem to be bathed in molasses and only respond with great effort. I am exhausted at day’s end. Those drugs of mine continue to pack quite a punch!

I hear the advice of all my friends, but just cannot bring myself to listen!

My goal for this coming week is REST and my hope for the following week is a PSA reading below 8………I guess we’ll just have to wait and see………

Thursday, February 23

The two centerpiece events of this past week were Laurie’s 57^th Birthday and our stay at Union Creek Lodge, just below Crater Lake.

It was fun to celebrate Laurie’s birthday – cards, presents, flowers, fine dinning, excellent wine and many well wishes from afar – a happy time!

 

Our dear friends, Tim and Pam, invited us to spend three nights with their group of musicians and skiers at the Union Creek Lodge. We had a fabulous time, with incredibly scrumptious dinners, stimulating, interesting conversation, super sweet skiing and lively music. I did come home physically exhausted and needed two days to recover, but climbing to the rim of Crater Lake twice and skiing down the virgin snow was a blast! It was especially fun to look back on the single track we were breaking and seeing the line of 17 other skiers trudging up behind in the fog and snow through the huge trees and open glades. Perhaps I should have done more music and less skiing but then again I am fighting 50 years of inertia of a keen desire for exerted play.

I could tell Laurie had an especially fine time. She was social, animated, relaxed and very happy to be there. My favorite memory will be when I asked Laurie what she liked best. She said:

“I seemed to be able to forget the cancer for most of the weekend”.

A Sincerest Thank You, Friends!

Thursday, February 16

Almost immediately after my last post, I receive the following sagely advice. Now mind you this is from one of only two nonagenarians I know, both of whom I deeply respect.

“So STOP already!  What do you think your body is saying? What choices do you have? My prescription is More Music!”

Sounds like my own advice from the “Adaption” post.  Perhaps kids these days should listen! When will we learn?

Sunday, February 12

Last time, I posted:

“We accept (Dr. Beer’s) recommendation to continue Enzalutamide for 6 more weeks and then get another PSA data point.”

In the meantime, I feel like my body is truly working overtime. I struggle with an overwhelming muscular fatigue. The exact sensations are hard to describe, but I feel weak all over. The muscles just won’t respond. It feels like they are bathed in tar or sap or other sticky substance and just cannot seem to contract fluidly. They get stuck! I move with lethargy and great effort.

I also experience continual joint pain. It is not debilitating, but quite noticeable. Aches and pains all over, especially my wrists and back.

My older friends might be thinking,“welcome to my world.” Perhaps age is catching up with me. Perhaps I am feeling the cancer as it invades my bones. Perhaps, I am losing a level of conditioning to which I’ve grown accustomed. Perhaps, I do not take enough rest days between workouts. Most likely, I am feeling the side effects of these powerful drugs. I don’t know for sure, but undeniably I am dragging. This is despite almost 10 hours of sleep a night and an occasional nap.

This gets me down slightly. However, I still continue to train for two up coming climbing trips – Red Rocks in April and City of Rocks in June. I still try my hardest to keep up with Laurie on our morning walks. Finally, I thoroughly enjoy our weekly ski jaunts, especially since we can pick and choose the days we go.

‘Keep’n It Real’ for my friends……………..

Thursday, February 9

Two mornings ago, Laurie and I dutifully prepared for and then drove to Portland – our OHSU pilgrimage.  Undoubtedly, we both would have preferred a snowy mountain destination for the day, but secretly I was pretty excited to get hard data feedback on the efficacy my phase three drug treatment. My PSA had been on the uptick ever since August, the end of chemotherapy. It was now 5 weeks since I started taking maximum doses of Enzalutamide.

We were old pros at this. No Google maps to navigate, understanding the traffic patterns, cruising through the new construction and our favorite parking attendant on duty! The hospital was packed – people all about the lobby and elevators, spilling out of the 3^rd floor blood draw unit and backed up on the 7^th floor hematology/oncology ward. Was there a post holiday sale of some sort?

Despite the massive crowds, we were ever so friendly and politely greeted by the reception folks. Timely and efficiently we were ushered into all three of our appointments. FUN is probably a strong word for our experience, but ‘pleasant’ sure does the trick!

Armed with all your well wishes and prayers, our questions and a huge degree of anticipation Dr. Beer enters. He starts to ask how I was doing. Laurie seriously tries to read his face (like an expert poker player). She intensely wants that hard PSA data point. Somehow, Dr. Beer realizes this and says: “Oh, you would like to start with the PSA data.”  Momentarily, we both freeze, perhaps subconsciously dredging up memories of one year ago. Firmly planted in our minds is the most recent test date (12/19/16) and PSA value (12.51). How would this one compare?

We hear 12.2! 12.2, are you kidding me? 12.2, really? 12.2 felt like that much dreaded, but not disastrous tie baseball game when you are 10 year-old little leaguer. It was like making the front end of a one-on-one foul shot situation and still being down by one. It’s like passing your driving test at 16, except the parking part. Boo!

So there we sat with data clearly showing a break in the upward treading of PSA, but only the slightest bit of improvement. Dr. Beer’s comments reinforced our wishy -washing feeling. He said: “not great, but not bad.” I felt, his inference that he was hoping for a far better result. We listened for a while, asked a few questions and then exited. I hugely appreciated Dr. Beer’s calming, empathetic and optimistic twist. We accepted his recommendation to continue Enzalutamide for 6 more weeks and get another PSA data point.

We move on to the Lupron shot, get our parking ticket validated and say our goodbyes. Laurie and I strongly bond on the drive home. Not until day’s end do we realize how emotionally exhausted we were. We plop down in bed, warmly hug and happily fall asleep in one another’s arms.

Good Nite my friends!

For all you data lovers:

Sunday, February 5

Your wonderful feedback after ‘A Big Eraser’ post brought me many smiles. It also seems like the post rekindled warm youthful memories for some of you. Bravo!

I shall use this post to recap my journey in the broadest of strokes. After all, when I return to my very first post, I realize it is dated this week a full year ago. It starts:

“It is an uncharacteristically sunny Eugene winter day. I casually stroll to my biyearly physical.  I exit knowing all is well. Feeling great and smug. I note that doctor requested a lipid panel in  the near future.”

I vividly recall the walk of that day.

Since then my first phase of treatment, from April to August, was a very successful chemotherapy, anti-androgen and steroid regime. This was coupled with excellent acupuncture treatments and the paleo diet. The emotional swings were tremendous but the body responded well –  a stunning decrease in PSA from a high of 70 down to 1.77. Thankfully, the liver held up exceedingly well to this drug assault.

The doctors moved me to a second phase of treatment – a significantly less invasive drug. The idea was to allow my body to recover and also increase the quality of my everyday life. My hope was this would keep those pesky cancer cells at bay for two years. Alas, as we all know, it did not work – almost immediately the PSA started its slow, incedious uptick!

By December, after many hurdles, I started my third phase of treatment, namely, a daily dose of Enazlutamide coupled with injections of Lupron every 4 months. Recall “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”.   We will get an indication of the efficacy of this third phase treatment as we venture up to a Dr. Beer appointment at OHSU this Tuesday.

Now here I am, one year later – Still Standing!

Except for a nagging fatigue, some joint pain, decreasing muscular strength and occasional hot flashes, I feel exceedingly good! I have fully accepted my illness and am able to deal with the emotional swings. I enjoy daily life immensely. I ski regularly, live large, eat well, sleep snugly and plan extended climbing, hiking, cycling and family vacations. I’ve learned to tremendously appreciate the small things in life.  Most importantly, I value, beyond words, family and friends and especially the most extraordinary person in my life –——- Laurie!

 

!La Pura Vida!

 

 

Sunday, January 29

I recall the thrill and excitement in kindergarten when the teacher would break out the huge boxes filled with art supplies. Now let me be clear, I was not the most adept art student at any time in my life – heck, colors were and still are difficult for me to distinguish. However, at five years old, I loved the prospect of playfully creating. I especially loved colored construction paper paired with the endless choice of those wonderful tools – markers, crayons, pencils, pastels, scissors, erasers glue, tape and sometimes even stickers in that large, plastic, covetable art box set out for each table group. This was an innocent, joyful experience of youth for me.

On Tuesday evening past, I received a pre-dinner phone call from the UCSF researcher, Dr. Thomas Hope. He is the coordinator of the PMSA PET Scan trial in which I am participating. He called me at home to personally explain the results of both my recent scans. Mind you, this is only the second time in my life I had received a call at home from a doctor in his professional capacity!

I am not sure of the exact research study question that Dr. Hope is attempting to answer, but a direct benefit to me for my participation in the study are these super powerful specific images of my cancer (more info). Up until now I’ve had 4 traditional Bone scans. The results:

4/14:   Focus of intense activity on the left pubic body.
8/29:   No evidence of osseous (bony) metastatic disease.
10/31:  No evidence of osseous (bony) metastatic disease.
12/15: Activity on the left pubic body.
New focus of abnormal activity in the acetabulum (hip).
Intense abnormal activity in the inferior sacrum.

The picture on the left shows the results of the fancy new PMSA PET scan.

The activity sites are:
1 -> Scapula, 2-> Ribs, 3 ->Hip,
4 & 5 ->Pelvis and 6 -> Sacrum.

Of course, I do not  have the ability to interpret this data nor understand its implication for treatment. However, it seems like the cancer cells have a keen desire to set up shop in my bones. Thus, my intuition is to reach into that large, plastic, covetable art box, pull out the biggest eraser I could find and gayly expunge all those black spots…………Perhaps this would prove no evidence of disease. I’d stop my drug treatment and merrily pick up my life where I’d left off last April.

Oh the joys of the innocence of youth………………

Monday, January 23

I think my last post has created some confusion. Apologies.

I’ve received numerous questions about whether the prescribed anti-androgen drug, Enzalutamide, which I have been taking daily for the past 20 days, has failed me. The answer is: we don’t know yet. It is simply too soon to tell. We will get PSA data and are scheduled for an appointment with Dr. Beer in two weeks – February 7. This will give us some indication if this drug is keeping the cancer at bay, but I doubt if we will know for sure the drug’s efficacy. Stay tuned!

In the meantime, I continue to take it. I feel exceptionally well, except for increased fatigue – nothing like chemotherapy – and some increased joint pain. Thus, I’ve committed to make sure I take rest days from my climbing training, skiing days, daily walks and occasional cycling jaunts. I continue to thoroughly enjoy the time I spend with family and friends, but again commit to down time, especially to relax and read outside when we are blessed with those occasional gorgeous sunny afternoons.

Finally, I relish in the joy that my general anxiety is extremely low and I seem to be able to mindfully live in the moment. I think am I able to do so because presently, I’ve embraced the uncertainty that is inherent in life itself.

So it goes………………….

Thursday, January 19

Laurie and I spent three wonderful days visiting with family – Lana, Tanya, Kate, Finn, Piper, Larry and Michelle – in the Bay Area. At every turn, we had lots of fun. We were keenly reminded how much each one of these folks add meaning and bring joy to our lives. In my spare time I had fully prepared for our follow up appointment at UCSF. I was especially happy that Susan would once again be able to attend.

I exited the appointment sorely disappointed. My understanding about how neuro endocrine marker and PSMA PET scan data would affect future treatment was vague and hazy at best. I still had little comprehension of why my PSA had risen while visible liver lesions were shrinking. I continued to struggle with drug side effects. Most disappointing was not knowing my treatment plan when Enazlutamide failed to work. I was searching for clear answers, but I was getting uncertainty!

Let me be clear, I do not blame Dr. Small and his team at UCSF for failing to get me what I wanted. How could he possibly provide me with certainty, if my case was indeed on the “edge of knowledge” as Dr. Beer had suggested a few months ago? How did Dr. Small know how my cancer would present itself and what treatment therapies would be available as a result of medical advances when Enazlutamide failed me?

 

What I learned this past week is something that we all already know quite well: Life is Uncertain. Life is uncertain for me, life is uncertain for Laurie, life is uncertain for you, life is uncertain for everyone on this planet. Perhaps that is what makes life so interesting and engaging? Perhaps that is why advice from Thich Nhat Hanh can work so well for us.

Breathing in, I calm my body.
Breathing out, I smile.
Dwelling in the present moment,
I know this is a wonderful moment.

 

All this said, at this very moment, I am quite certain of one thing. That is, I experience unbridled joy when I think of my dear sister. She is working her way out of the pit of her lonely illness. Doing so, she has expressed a never dying love for me! And that certainly makes me happy!

Sunday, January 15

Adaption seems to be the word of the week for me.

First and foremost is my body adapting to the new cancer drug: Enazlutamide. I mentioned previously that this is the synthetic non-steroidal anti-androgen drug approved in 2012, which was so expertly delivered by the UPS driver who skidded to a halt in front our house eleven days ago. I take a daily oral dose of 160mg. I am trying to adapt to the side effects of aching joints and intense fatigue. Now, mind you, this fatigue is nothing compared with the chemotherapy sessions of last summer. However, I am dragging myself to bed at day’s end and sleeping for up to 10 hours a night. This is annoying but still acceptable since I do not need to report to work nor be responsible for anyone other than myself. Nonetheless, this weariness is so much different than what I’ve experienced over the last few months.

Myself, along with the rest of Eugene, were forced to adapt to our icy, snowy roads and frigid temperatures. My bike ride to the climbing gym earlier this week was comical and most challenging. I especially like the comment from a woman on the sidewalk.  She yelled:  “Wow you are brave……………or just stupid”

Finally, this past week I have started my climbing training for the upcoming season. It feels great to back at the gym, especially with my friends and climbing buds, Laurie, Linda, Bob etc. Will it be Red Rocks, City of Rocks, Smith Rocks and/or Squamish? It matters not, time to adapt to this challenge, as I have not been on the wall for quite some time.

Not sure what this Tuesday coming (UCSF appointment) will require with respect to adaption, but I’ll be sure to report the results soon enough.

 

Trying to keep up and Adapting!