Month: March 2017

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.

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………