Faith & whatnot

A little while ago I read a book my sister gave me - Moonlight Sonata at the Mayo Clinic by Nora Gallagher, who I know because she and my sister went to college together.  Nora's memoir details her path pursuing information about a mysterious medical condition she has. Her story provides brief glimpses into the spiritual side of her experience, which is what attracts me most. Don't get me wrong. The medical piece is not to be trifled with and her story is frustratingly similar to anyone who has crossed into the world of medical situations. 

Back to the spiritual experience.  The glimpses Nora provides of her spiritual experience call to me because of my failed attempts (here and elsewhere) to wrap words around a similar change in a specific, defined, spiritual practice. (Nora's was clear, I think. Mine, not so much.) Instead,  I continue to struggle to find words to describe the changes taking place in me.  I'd really rather take an easier way out, claim "there are no words for this" even if it's true that some things are too deep for words, and that's all there is to it. But if I can't use words to at least point to that thing and say that thing, or draw a circle around the topic and point to whatever somewhere around the middle and say there... that! ..then how do I share what seems so important to pass on?  

Sidebar: 

     On Wednesday evenings for the past 10 years or so Ginny and I have met with a small group of people to practice lectio divina, an ancient form of meditation. I need silence. Really. I need silence. This gathering is a simple method to get me to be silent because I don't have the discipline to do it on my own. This group practice has become my only church right now. And that is significant because traditional church had been a significant part of my life up until a few years ago.

End Sidebar

I'm aware that my spiritual and cancer experiences are woven together so tightly that I can no longer separate them. And this seems only right.  Without having cancer stop me in my tracks, I doubt that I would have (on my own) stopped long enough to notice that I needed to stop and notice. And without having some sensitivity to the spiritual side, I don't know if I would have noticed the changes that cancer brought to that. Or, rather, what the treatment protocols did to that.  Taking away testosterone for a year did things to my thinking and emotions and strength - everything - because, as many of my women friends laughingly told me, hormones affect everything.  

And now, back on the male side of the fence I think "So what? Is that even significant?" It is, obviously, or I wouldn't be writing about it. But like my mother's slow, agonizingly beautiful slide into death prompted questions about things I'd never questioned before, the testosterone depredation and return did the same thing.  And I'm still struggling to frame it with words. 

Nora's adept expression has put words around some similar questions. My hat's off to her.

LiveStrong Challenge, Davis + more

Field of Sunflowers along the ride route

I rode the subject event again a few weeks ago.  This was my third time riding in the LiveStrong Challenge in Davis, CA since recovering from cancer treatments.  It was a great ride, as ever!

Tony, Kent, Jeff, and me at the finish

I rode with Kent Smith, Jeff Thompson and Tony Herz, who were training partners and we all completed the century ride (technically just over 96 miles, but we counted it as 100 due to some of the most amazing headwinds we’d ever experienced which hit us late in the ride). 

This year’s ride had lower attendance (about 800 riders) than we saw in 2012 and 2011. But I talked to more people this year - other survivors, other people riding for relatives and friends - and there were several great pace-lines we got in or led that were a lot of fun.  And we rode safe: no flats, no falls!  Yay!   My sister Ellin and husband Patrick surprised us by being at the halfway rest stop! Big fun! Then they drove into Davis to join Ginny at the finish line to cheer us in.  

The finish is a big deal. Your bike number gets relayed to an announcer who broadcasts your finish arrival to a throng of cheering people. Cancer survivors completing the event go off to the right side and are handed a wonderful yellow “Survivor’s” rose as you ride through the finish area.  This was a complete surprise in 2011, the first year Kent and I rode, and I nearly crashed because I was so ambushed by emotions!  Now, even though I know it’s coming, this symbol continues to make me tear up.  “Each tear, an honoring”, as a friend said.  I’m holding the rose in the pictures (amazingly framed in the 1st one).

Ginny: "EWW... you're all WET!"

What does this have to do with prostate cancer?  Well, it IS a cancer benefit ride, for Pete's sake.  But it also represents a return to strength following tonsil surgery, and more, what I'm seeing as a return to strength after the end of cancer treatments - which ended 2010.  Three years, almost, which would have seemed too much to take had I considered it going in.  And I am so fortunate to have survived.  This event is where I first used the word "survivor" about myself and was amazed that with it came an incredible wave of emotion - sadness, gratitude, pain, relief - a poignant, heartbreaking feeling too deep for words.  I used the word "ambushed" earlier about this, which is how I experience it. 

I talked to a guy at the gym the other day and he asked me about the trainer I use and why I'd chosen to use a trainer. It's easy: Paying her gets me into the gym. But I explained that I had gone through some treatments that were affecting muscle mass (removing it!) and that led to mentioning the big C.  And he said "congratulations" or something, to which I replied, "I don't know. A lot of the time I didn't think there was anything special or brave about it. It was just showing up so the techs could do their thing."  But he didn't accept that, and maybe I shouldn't either.

Onward and ...

...upward? Well, perhaps.  I was thinking this morning how many people helped me and my family along the way through the treatment regimen, and importantly, the recovery struggle  (because struggle it was).  Without help, I don't know how anyone manages this kind of experience.  The blanket "thanks everyone!" seems inadequate. Specific thanks would be unnecessarily lengthy, yet something remains.

Today I finally sent an email to Dr. Nelson Stone who, when asked for information, took the time to reply, request information, and provide unsolicited input. His unbiased view allowed me to make decisions based on data, not emotion.  (The emphasis on data started with my radiation oncologist, Dr. Peddada, and I credit Dr. Kraft with insisting that I consult with him.)  When I contacted Dr. Stone initially (still, I think) prostate cancer required a fair amount of decisions on the part of the patient, unlike some forms of cancer.  Dr. Stone helped me form a plan with my doctors.  My recent visit to my urologist, Dr.Kraft, indicates a continued PSA level of less than 0.1 (which is as close to zero as labs will say), and testosterone level is still in the normal-high envelope (it's a big envelope).  And those consistent numbers mean I can now switch to yearly visits.  Small victory, and I'll take it.

Somewhat related to moving on, I had my tonsils out 3 weeks ago. And how are tonsils related to prostate cancer? Good question. My tonsils have been large since childhood, but after having cancer, my PCP started a campaign to get me to a specialist because she thought my tonsils might be harboring something. I have seen no data to back this up, specifically, but prostate cancer, if it spreads, can show up in lymph nodes (usually in the pelvis) and to bones (top two). Tonsils are lymph nodes, but clearly not in the pelvis, but they're lymph nodes.  Do you see the circle forming?  (Mayo lists bones, lymph nodes, lungs, liver, brain as the top 5 common sites.)

But I went (finally) to the otolaryngolgist (what a word! ENT is easier) and he said they should come out ("let's pop those bad boys outta there").  I thought a second opinion was needed, not only because I didn't like his answer, but he had an OfficeNazi on his staff.  Yeesh.

Second ENT was very chatty. Ended up saying I had 2 out of 3 factors indicating they should come out. So, not a requirement, but if I didn't do it, I should be seen by a specialist every 6 months. I thought "oh right... that's not going to happen".  He also said, in the interest of full disclosure, that "of all the surgeries I do, this one is the most painful".  Thanks, doc.  Me = Drag feet for a few months.  Finally scheduled the surgery and did it.
  (Sidebar) Oh baby!  If you're an adult and still have your tonsils, make them say "you're going to die unless you do this" because you'll want to for a couple of weeks after the surgery.

At any rate, the pathology report was clear (yay!).  I wasn't overly concerned about that, but had no idea that Ginny was worried about it until she visibly relaxed when the doctor told us at the post-op appointment. Unfeeling, insensitive American male that I am.

Point is, once a cancer patient, always so labeled.  Fair or not, it's the case.