Month: December 2016

Friday, December 30

The craziness of my full time job came roaring back with a vengeance. This is after a delightful respite capped by the Christmas Day family get-together at Steve’s place. I  worked exceedingly hard at keeping things straight – even constructing a written summary of the bigger issues to help guide me (attached).  I was extremely happy NOT to find myself flustered.

I continue to shower enormous praise on all the folks with whom I interface at OHSU.  My current star is Richard who has worked tireless over the past week with MODA and XTANDI Support Solutions to overcome denials of insurance coverage for Enzalutamide, the cornerstone drug for my next phase of treatment. Claire, the biopsy trial coordinator, and Beer’s nurses, Pam and Erin, also ROCK! They have put so much time and effort into me that I feel like I am their only patient…….Incredible!
A shout out also to the other kind and courteous folks at MODA, UCSF, XTANDI, Peace Health and Oregon Imaging who helped me navigate through this hectic time.

Except for a current hiccup this very morning concerning actually receiving my first shipment of Enzalutamide, things feel considerably calmer. I decided not to participate in the biopsy trial at OHSU – deluge of pretests, scheduling issues and a low probability of obtaining adequate tumor sample due to its decreased size (a good problem). I hope to start Enzalutamide presently. All seems in order for the January 17 follow up appointment with Dr. Small and the subsequent PMSA PET Scan at UCSF. Finally, I see Dr. Beer on February 7 to assess the effectiveness of this new phase of treatment. Calmer!

A few notes before signing off:

On the dark side: PSA continues to inch up. Also recent bone scan shows two NEW foci of abnormal activity: My left hip and sacrum. They say this is compatible with progression of metastatic disease.
On the bright side: The recent CT Scan shows a further significant decrease in visible of liver lesions.

 

So it goes…………….Time to Relax and Breathe!

 

 

 

 

Or…………Go Play in the Woods

Sunday, December 25

 Opening holiday cards, stringing lights, listening to Christmas music and welcoming cookie bearing visitors sure rekindle wonderful childhood memories. Memories also: vividly recalling the sensational feeling of complete relaxation upon finishing final exams at university or submitting end of semester grades when teaching – the exultation of a gigantic burden lifted. Finally, the memories of traveling, sometimes long and far, with the singular focus of being with family, friends and loved ones………..Tis’ The Season.

This year’s season is as cheerful as past years:

• Cards, lights, music, cookies, visitors – Yes!
• A few days of freedom away from the medical system – Yes!
• Physically feeling the best I’ve felt since springtime – Yes!
• Family and friends close-by and Christmas evening festivities at Steve’s house – Yes!

I acknowledge another feeling of connectedness. It is with those physically distant family and friends through technology. Over the last few days the emails, texts, phone calls, videos and blog responses have been remarkably special and have substantially augmented my joy and happiness during the season!

In the midst of this extremely joyful season: I remain eternally grateful for the awesome support while I continue my journey. I look forward to a relaxed day, free from the worries of medical issues – drugs, insurance and treatment speculation. I wish that we all may be cozy and warm while enjoying the special time spent with people we LOVE!

 

Happiest Days to All!

Wednesday, December 21

“So Mike, where have you been? What’s up? How’s it going?”

It’s been a long time since I felt like I’ve worked full time – you know, working for the man! Well, I guess that’s where I’ve been – working long and hard to help align the stars in my quest to deal with this dynamic disease.

The story starts a few months back, post-chemotherapy. My PSA readings were slowly, but steadily climbing. Simply stated, this meant an active cancer. So began my full time job.

The job description seems to include doctor appointments, information gathering, a blood test here, a CT scan there, an IV for another isotope, a 3-hour wait, fasting now, lots of water later, phone calls, understanding criteria for clinical trials, navigating insurance nuances, monitoring the body for ‘other’ changes, starting a new prescription drug and ultimately deciding on the next course of treatment given limited data. The unconditional support, concern, empathy and expertise of Susan and the polite, dedicated professionals at OHSU, UCSF, and Peace Heath has been invaluable. Nonetheless, I often found myself stressed and barely in control.

The weekend respite was marvelous! We spent all day with our dear friends, Tim and Pam. Furthermore, we did so in a chilly winter wonderland, surrounded by pristine forest and under blue, sunny skies.

The weekend was sandwiched between full workdays. Friday called for multiple body scans in Eugene. These scans were a requirement for enrollment in an OHSU clinical trial designed to understand how cancer cells mutate after treatment with enzalutamide, a powerful hormone therapy drug, which will probably be the centerpiece of my next treatment regime. Monday called for our sojourn to OHSU for a physical exam, blood tests and consent form signing– all of which were also requirements for this clinical trial. Tuesday was my killer 20-hour day – down to and back from San Francisco. I participated in another clinical trial designed to help evaluate a prostate cancer diagnostic tool. Today I spent endless phone hours dealing with the fact that our insurance company denied the claim for my next treatment drug. The repercussions of this could be serious, but the team at OHSU suggests I sit tight and let them work it out. They assure me that a few weeks of no treatment will be just fine – but I must admit I am a little rattled……….

I guess the long and short of it is that it’s a tough week at the office. We’ve all had them and probably will have them again. We survived them and moved on. So there you go…………Mike’s been struggling at work all week long!

 

But then again……………….

Do photos like this make it all worth it?

Friday, December 15

 Remember being an elementary school kid, going to bed on a cold winter night. You would hope against all odds that upon waking and peaking out the window a beautiful blanket of white snow would cover the ground. Better yet, you would get to snuggle back into those cozy blankets and sleep in until daylight. Best yet, it was going to be an all-day play day outside in that blessed snow. Yes it is A SNOW DAY! Oh, was that the best feeling ever? Life just did not get better for a 10 year old!

As a middle school teacher for 25 years, I always professed that I did my best work when I was in the mindset of a 13 year old. I called it ‘in the zone’. Thus, I often got to relieve those hopes and joys of a SNOW DAY well into my 50’s. It was like a free day – a gift of 24 hours – you could do anything you’d like and not fall behind.

All these memories came flooding back yesterday when I realized that getting to OHSU was simply out of the question because of winter weather. Driving to Portland, being briefed and then signing the enrollment papers for a cancer research trial along with the subsequent blood tests would just have to wait – I had a free day – a gift of 24 hours.

Laurie and I went on an extended, chilly urban hike. We reveled in the winter beauty and inspected the ice damage. We came home; she made chicken soup while I played in the yard (with chainsaw). Later we read, relaxed and did not fall behind – a fine day!

Looking forward to what today brings!

Sunday, December 11

Saturday night I experienced an extended profound sense of unbridled happiness!

Laurie and I went out to attend the annual Cascadia Wildlands Wonderland auction. This is a fine event, for a wonderful organization, attended by staunch environmentalists, who think just like us. Not only are they our ‘peeps’, but some are our best friends.

From the time I entered the hall I continually bumped into friends. Their genuine interest and profound concern for me was extremely heartwarming and quite touching! At every turn they would ask, “No Mike, how are you really doing?” They legitimately wanted to know firsthand, exactly where I was and how I felt while on this cancer journey. They wanted a real, true, deep interaction – nothing fake! I could sense the emotion in their voice, the intensity in their eyes, the softness in their face, the kindness in their heart and the warmth in their embrace. They were tender, caring, compassionate, generous, fervent, warm, kind, and devoted. I truly felt the space between us fill with love – an absolutely incredible, overwhelming, awesome feeling!

There was no hint of feeling sorry for me………….it was just plain caring. They solely wanted to help. They wanted to be there for me no matter what my need. I got the sense that they would do anything in their power to whisk my disease away and make the world right for me (and them).

Over and over this happened, until I realized that there was a grand interconnectedness between us all! We were all feeling, responding and sharing in our humanity! I was phenomenally impressed and extremely elated!

I whispered to Laurie: “I am so happy to be alive!”

Saturday, December 10

 Apparently my journey has temporarily diverted me away from my friends in ‘blog land’. Well, I am back on this cold, wet winter day in the Pacific Northwest.

For the last few weeks, despite physically feeling better than ever, I find myself struggling. I have fallen back to a place filled with anxiety and unrest. I get extremely agitated over the smallest things – a conversation, a sequence of events, a phone wait. Minor obstacles often seem insurmountable. I cannot seem to just let things roll off my back, like water off a duck. I cannot seem to trust that things will work out without sticking my nose in every tiny detail.

Where is my middle way?

It is not quite as bad as the four-year old temper tantrum, but there are overtones of such. Embarrassing! After settling down, which normally does not take long, I find myself sad and reflecting on how pathetic I had acted. These feelings are new, real and upsetting. My hope is that as I face them squarely I will develop strategies to deal with them.

So it goes, as I continue in the vein of: “Keeping it Real”.

Despite this real struggle, it feels good to be home. I busily continue my current full time job – preparing for my next treatment. The doctors want blood tests, a CT scan, a Bone scan, a Biopsy and more blood tests. I want to be fully appraised of what to expect and what needs to be decided so I read and communicate often. I never imaged that I would accept a job requiring an early morning flight from Eugene to San Francisco only to return late that same evening.  I thought that was for jet set executives types – not the likes of me. It’s not quite frantic but far more hectic than I like!

Be assured all is NOT dark and gloomy. The photos from this past Wednesday show how easy it was to get a campsite and the magical winter wonderland in which we played! You may ask how hard can it really be to center yourself when such beauty surrounds you? That’s exactly what I am thinking right now!

Sunday, December 4

I have been struggling over the last few days to fully comprehend that MY cancer has now progressed to what is called metastatic castration-resistant prostate cancer. I think, this means the androgen deprivation therapy has simply stopped working. Intellectually, I know that almost all patients do progress to this situation, but something about this stark reality continues to drag me down. I wrestle with this, but marvel at how things seem to be coming together all around me…………..

– I have been accepted into a clinical trial at UCSF which involves a fancy imaging device know as a PMSA PET Scan. Apparently it can ‘see’ much more of my cancer than traditional devices (I’ll leave the rest to the experts).  The folks at UCSF have been wonderfully accommodating and all-around delightful. I look forward to seeing them soon.

– Dr. Beer talks about the prospect of an OHSU immunotherapy trial expanding in about two months, for which I may be eligible. The initial results are very promising for patients with liver metastases (just like me). He’s excited, so, needless to say, so am I!

– My climbing buddy, good friend and research doctor, Chris, tells me he will speak with Dr. Beer about my case. He then will assist me in making the best decision for my next course of treatment.

– I receive a call from my most staunch medical advocates, Susan and Manfred, while vacationing in Maui. They wanted to know exactly how the appointment went last Wednesday. They confer with each other and offer much appreciated advice and support.

– Snow piles high in the mountains and Laurie, Paul, Yvonne and I enjoy our first back country ski of the season. Gorgeous!

– BEST OF ALL is how the magnanimous Laurie continues to shine and bring love and light to me under all conditions and circumstance. She stands by me as strong and solid as a granite boulder – truly stable and relentlessly unwavering!

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How fortunate I am as things come together for me!