Month: February 2017

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!