Month: January 2017

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!

 

Saturday, January 7

I lie comfortably in our cozy window seat looking out on our sauna in the yard watching the large snowflakes fall and pile up just a few feet away. It is so silent and tranquil. I enjoy the lazy, peaceful ambience. The outside serenity seems to echo the recent transition from hectic to calm of my cancer journey.

This first week of the new year has been an excellent one…………..

I feel good about the decision to start phase three cancer treatment. This is a simple daily oral dose of enzalutamide, a synthetic non-steroidal anti-androgen drug approved in 2012. The final logistics of implementation required only a few minor phone calls. Best yet was 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.

I also feel good about not participating in the OHSU biopsy study. We eliminated a drive to Portland for aggressive poking and prodding. Additionally, no need for post biopsy recovery.

Laurie and I have immensely enjoyed playing in the snow, both in the mountains and here in town. Yesterday’s urban hike was particularly gorgeous. Frigid temperatures coupled with a brilliant sun reminded me of childhood times back home.

 

Finally, I am excited to have started my winter training program for the up-coming climbing season. I look forward to gym time – solo as well as with my Oregon climbing buds.

It is indeed a good time! I feel great physically. I feel centered;  my emotions in check. I love the prospect of a restful less traveled next few months. I am happy and am fully convinced that life is indeed grand!

So, for now, I ride the wave and appreciate the calmer still.

Sunday, January 1, 2017

A gigantic HAPPY NEW YEAR wish to all my friends who continue to accompany me on this most improbable journey! May your own resolutions, intentions or wishes bring you joy and happiness throughout the year!

I would like to share my one intention and one wish for the year:

• My intention is to seek and then embrace the wisdom, which will allow me to yield and adapt to the challenges presented me throughout the new year as I continue to navigate this cancer journey.
• My wish is that this new anti androgen therapy drug, Enzalutamide, does the trick and keeps those pesky tumor cells at bay for the entire year.

 

Climb On my friends!