Month: May 2017

Tuesday, May 30

It has been a long and tiring day for Laurie and I – up at 5:15 am, 6 hours at the healing center and 6 hours of driving. I had the standard blood draw, a check-up and consult with Dr Beer’s PA, Allean, a consult with the pharmacist and then the double infusion.

The hard data reveals another disappointing rise in PSA – a new record high of 217. However, this represents only a 13% increase over the last 3 weeks, compared to an average of 103% increase over the last 4 months (see graph). The second piece of hard data indicated that 2 of the 4 liver enzymes continue to increase to the point where I needed special permission today to even receive the infusions. No scans were taken, so no new data on tumor size is available.

Even before the PSA data was in, we had a frank discussion with Allean who assured us that a small increase or decrease in PSA data would not be telling. After only one treatment, it would not be prudent to draw any conclusions. This is consistent with Dr. Small’s (UCSF) adage of never, ever, ever, ever rely on one piece of PSA to determine a change in treatment. Also, Allean fully assured us that I seemed in very good physical condition and we seem to be doing everything in our power to respond to this disease. The burden of cure is in their hands.

This makes me think of the serenity prayer:
“Grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
    And wisdom to know the difference.”

We continue to live by the maxim, one day at a time or in climber’s terms: bolt to bolt and hope for a better day tomorrow!

Saturday, May 27

I think I have been here before – summertime chemotherapy!

It has now been nineteen days since my first chemotherapy infusion of this summer. In two days I will start the pre-chemotherapy drug regime (steroids and anti-nausea medicine) and then the next day I’ll receive infusion number two. In some respects this brings back memories of last summer, but in other respects it just is not quite the same. It is hard to put my finger on it, but this time around it seems more real, serious, filled with a lingering doubt. I thought I would be an old pro at this, but that does not seem to be the case.

One big difference is last summer I vividly recall waking up most mornings to a cool summer breeze, birds chirping and an energetic anticipation of an awesome day. My eyes would simply pop open and I would be psyched to experience the unfolding of my new day. So far, that feeling seems to be keenly lacking. A second huge difference is my inability to get my stomach completely correct. I can and do eat, but often it is touch and go and hardly ever do I feel 100% even after consuming the most desirable meal. A final difference, this one being very positive, is the absence of that debilitating anxiety resulting from the withdrawal from the steroid medication – remember the stories about crying in the market or losing it completely with the inability to light the BBQ? So far nothing of the sort!

One similarity is the extreme fatigue. Recall the “biking uphill, against the wind, with brakes dragging”, or “walking about with the huge truck tire chained to your waist”? It’s back!

All this said, there continues to be no better feeling than sharing the energy, enthusiasm and love of life of our visiting youth. First Zach (age 10) and Jacob (age 8) and then Corey (age 21) and her two dynamite friends come to stay and share with us. They brought me untold joy and fun despite the trials of summertime chemotherapy. On that note, a gigantic thank you to Rich, Steve, Katie, Rhonda, Orion and Tommy for helping absorb some youthful energy and allowing both Laurie and I much coveted down time.

Presently, we are at the beach house in Manzanita with our fabulous friends, Manfred and Susan. We are blessed with warm sunshine, wind blown negative ions, crashing wave sounds, delicious food and lots of laughter. Life is good – one day at a time!

Saturday, May 20

Laurie was especially happy this morning when I reported that my morning weigh-in revealed that I had gained roughly 5 pounds over the last four days! Of course, she (and the doctors) want me a little chubbier to deal with this summer’s chemotherapy treatment. I just as soon stay a little trimmer in hopes of continuing hard climbing for at least another month.

Not withstanding though, I think my sheer joy over the last few days stem from the fact that I CAN now EAT again! Acupuncture, time, the miracle of modern anti-nausea medicine or old wives tale remedies – I don’t care – I am back on the food track and loving it! Interestingly enough one of the two more potent anti-nausea drugs prescribed earlier this week, namely Zyprexa, is an atypical antipsychotic. Thus perhaps my current euphoria might be induced by drugs, by gorgeous weather (it has been 75 degrees and sunny), by the upcoming full-on play visit of my 8 and 10-year old nephews, by the natural receding effects of chemotherapy or by being totally in love with Laurie! No matter, I’m back and loving it!

Once again, my deepest, sincerest thanks to ALL of you for the heartfelt wishes and prayers over the last two weeks………..Be fully assured they helped us weather an intense, rocky storm. Now back to the task of lounging around in order to deal with the incessant chemotherapy fatigue and preparing for my next infusion at month’s end.

Oh, the journey of a lifetime continues with such vast oscillations. Simply Amazing!

Wednesday, May 17

With my own sense of amazement and awe, I think I am beginning to more fully understand the horrific impact that real chemotherapy has on the human body. This new double dose regiment has really flattened me. I truly believe that now I can sympathize with the millions of people who have gone and continue to go through this daily.

Up until this morning my biggest problem has been an incessant, intense nausea. I had anti-nausea drugs but they were useless – rolled over like the huge ocean wave on your sandcastle. Laurie and I tried everything we could think of ranging from grandma’s folklore to Internet miracle cures. On Sunday night, it was so bad that the only thing I could hold onto were the “Hang in there, Mike” messages I was receiving from all of you.

After yesterday’s emergency, lengthy acupuncture session and a consult with nurse, pharmacist and oncologist leading to two new anti-nausea drugs (big guns as Laurie now refers to them) I am beginning to feel ever so slightly better – a move toward normal. During the whole time I had the Joni Mitchell song “Big Yellow Taxi” stuck in my mind. I was focused on the chorus: “Don’t it always seem to go, that you don’t know what you got till its gone” – the simple ability to eat food.  I was willing to trade an even more debilitating fatigue for a stomach able to handle even the slightest bit of sustenance. I was wiped out!

The good news:

– Finally, today I feel a little better and have eaten three minuscule meals.
– I do not seem to be burden with the anxiety and panic, which I had felt so strongly after my chemotherapy sessions last summer
– I have the luxury to sleep, sleep and sleep some more whenever that crippling fatigue rears its ugly head. It is truly amazing how slow I walk, how steep the hills feel and how many ordinary citizens pass me on the bicycle.

I sure hope the tumor cells are struggling at least as hard as I am on this new, real meal deal chemotherapy.

 

 

Seeking tranquility among the BIG tress!

 

Sunday, May 14

To all you mothers out there, I wish you the most Happy Mother’s Day.  The job you do and have done is ever so valuable for us all.  Thank You!

 

 

 

MOM, I SURE MISS YOU!

Saturday, May 12

The last few days continue to be extremely difficult for Laurie and me. We try to summon up the energy to crawl out of this hole, but find ourselves continually turning inward to seek the comfort of one another. We embrace, we kiss, we hug, we cry. Our feeling of sadness is far keener than that of anger.

 

We have spoken with some of you and have received a deluge of heartfelt, warm, touching notes to which we know not how to respond. We, too, feel the helplessness with respect to this ravaging, relentless disease. That said, your support has been fantastic and no matter what you do, it is the right thing to do! We undoubtedly, feel the LOVE.

I thought I had a good feel for dealing with the physical effects of chemotherapy. Regrettably, it is certainly more difficult this time through. Perhaps, it is due to the fact that I now am being dosed with the same Taxotere, plus a stronger cytotoxin agent, Carboplatin. Additionally the 8 doses of the glucocoriticosteriod, Dexamethasone, have its nasty effects. A viciously dragging fatigue is my main issue, but so is a nagging nausea and some minor bone pain.

Presently, I am scheduled for 4 more chemotherapy infusions spaced three weeks apart. This will take us through August 1. We are not sure if we will have a hint of this treatment’s efficacy until at least the third treatment (6/20). Thus we are reevaluating our summer plans in this light with our priority being our family reunion and Tanya’s family vacation.

In the meantime, there are some rays of HOPE, on which I will elaborate next time. Until then, thank you for everything you offer us – you mean the world!

 

Faking it!

Tuesday, May 9

The incredible highs and lows of this journey continue.

After a most wonderful all day adventure with Chris on the new climb, Dodgeball, at Red Rock, I dropped him at the airport on Sunday morning (10:45 am.) and started the two-day drive to OHSU. After a chilly campout on Sunday night in the mountains just north of Susanville, I swung by our house for a bite to eat, a shower, a quick repack and Laurie. We were off to a 2:15pm blood draw and CT scan in preparation for today’s appointment with Dr. Beer.

Both Laurie and I had severe doubts about the efficacy of the most recent PEMBRO trial, not to mention the efficacy of all three of the androgen deprivation therapy drugs over the last 9 months. A few hours ago our fears had become fully realized. Slammed!

Dr. Beer gloomily reported a PSA rise of 170% – a new record high of 191! Also reported were scans showing a wild wide spreading of my cancer, lesions of various size in my: lung, liver, bladder, prostrate, seminal vesicle, rectal wall, abdominal cavity, lymph system, vertebrae and pubic bone. Worse still, we were told there is significant compromising of liver function! Once again, this confirms that my particular strain of prostate cancer is extremely aggressive and resistant.

I sit now in an infusion chair where I was to receive my third infusion of the immunotherapy drug PEMBO. Dr. Beer has pivoted drastically. We are bailing on the trial and reverting back to chemotherapy to zap those invading cancer cells – a more aggressive chemotherapy. I await my first infusion now!

Admittedly, I feel a little angry, but more sad. Sad that Laurie needs to be further dragged through this dark ordeal and sad that I must report this news to you. I do not regret any of the decisions we’ve made thus far. I continue to be impressed and confident in my team’s dedication to my treatment, not to mention their sincere empathy.

Presently, we are trying to embrace a feeling of HOPE!

Saturday, May 6

I’ve had so many awesome adventure days this past week. These days have been filled with an almost perfect mix of excitement and nervousness. I have tested my limits with intense, sustained physical exertion. I have developed a unique, heartfelt camaraderie with the person on the other end of my rope. These days have brought an unsurpassed joy to my soul and a soaring spirit that I feel incapable of expressing in words. I could not be happier with my time in Red Rock Canyon. It has been off the charts amazing in all respects.

Presently, I find my body blissfully tired and quite ready for the soundest of sleep. I will parse out my trip a little more fully in a near future post, but for now be very well assured that I am most happy and content as my daily spring climbing expedition days draw to a close and I return home to take on the task at hand.

Except for one thing, I fully believe that I must be the luckiest man in the world. Indeed, I am truly blessed!

Monday, May 1

Despite the fact that I have been away from you all for over a week now, this will be a brief post.
For the past week I have been lost:
– in a wonderland of red rock canyons, deep blue skies and warm sunshine.
– for the words to truly describe this most incredible climbing adventure.
– trying to generate the gratitude to my climbing friends for allowing me this experience.
– finding time to make this post. We hike for hours, climb till late, eat together, tell stories, prepare for the next day of climbing and fall soundly into bed.
– figuring on what body part to put the ice pack at day’s end.

Perhaps the only place where I have NOT been lost (so far) is where to set that next piece of protection to safely continue that climb.

 

PSA be Damed – We are going CLIMBING!