Wednesday, April 29, 2020

Patience Young Grasshopper . . .

O.K., so maybe it's not cool to cop David Caradine's famous line from the TV series, KungFu, but it is oh so appropriate at this point on our Unexpected Journey to hear those words bouncing about in my mind.

You see, it not longer surprises Cliff or me when we reach the point of impatience on long, arduous treks.  For example:
  • On the seventeenth day of our Pennine Way Walk, in our impatience to be out of the rain after sixteen (mostly sodden) days of making our way along the spine of England, we decided to wrap our last two days into one.  We completed that marathon day (yep, 26+ miles) in the (mostly pouring) rain.  All because at end of the trail we anticipated dry boots, a warm and dry bed, and a hearty pub meal chased down with generous pints of cider.  
  • At the end of 28 high-altitude days and 300+ miles in Bhutan, we lusted for the final heavy-booted steps of the trek, which would release us to a world of hot showers (after only one in 28 days -- not hot), food served in warm places (doesn't happen above 15,000') and the quiet unity of one another's company without the ears and input of eleven fellow trekkers. 
In neither case above -- and there are others -- did our impatience to wrap a trek diminish in any way our overall experience.  But it did get us caught up, if only for an evening, in a "let's get this over with" attitude that threatened to tunnel our last-day's vision toward a single objective -- a day within which were singular moments of amazement, if only we were patient and present to recognize them. 

And now, after nine months of trekking the unknowable path of the Unexpected Journey, we find ourselves growing impatient to be done.  After all, pre- coronavirus (and my disease progression), we expected to be spending May and June training for the 1,300 miles of the Via Francigena . . ..

Keenly aware of my personal impatience, last evening I talked about it with my favorite aunt (an incredibly resilient and present women).  Then last night, with my state of restlessness laid open and bare,  I dreamed that Dr. Rixe (aka, my super-hero oncologist) spoke to me in Caradinian KungFu-ese.  And this is what he said:

"Now is the time to fight as you never have fought before."  

NOW -- in the present.  Now -- in each moment.  What is around the corner or beyond the summit is unknowable . . . while what is here today fully is revealed with accompanying waves of appreciation and gratitude.  Really, in which state would I rather live (agitated or appreciative)?  This is not the time to get caught up with internal fears and desires (and the suffering they bring) rather to increase my awareness of my present environment, dig-in, and trek on.

And so that's where we are.  Walks continue.  Connections (albeit through social distancing standards) with pals continue.  Laughing together over silly (not) words we find in the NYT Spelling Bee continues.  Cooking together, dancing together, being together as TeamBoltz continues. . . . in the only moment in which we exist:  The now.

So, I'm choosing to take a we'll see stance toward the next leg(s) on our journey (and we'll see takes patience -- a lot of it).  I need the equanimity.  I need the flexibility.  I need all the strength I can summon.  To make room, I am letting go of impatience.  This grasshopper is rising to fight, as she never has fought before!

Quote of the Day:
Have patience with all things; but first of all, with yourself.  
                                                        ~Saint Francis de Sales

Masquerading as a beekeeper: SPF 100
Progress:
  • So, targeted therapy side effects are (IMHO) neither greater nor less than chemo side effects.  Rather, they are different (and equally crappy). One new effect: photo-sensitivity.  Response: SPF 100 outfit (new style for this Florida girl).
  • Pondering a new pair of shoes, I caught myself thinking" "Yeah, but how long do I really have to wear these shoes?"  Recognizing that demoralizing projection, I BOUGHT THE DARNED SHOES! And they are fabulous.
  • I am in the present  I am in the fight.  I am primed and capable of fighting, as I never have before.
  • I am focusing on a greater landscape than that closest to the Unexpected Journey path through a sewing project that shifts my seeing, and doubles my appreciation, to the amazing warrior team.  Your passion, determination, incredible talents, abilities, and love inspire me. 


VIA FRANCIGENA!

Wednesday, April 22, 2020

When Fourteen Equals One

Headed to Treatment #14 / #1
Occasionally, the numbers just don't seem to add up.  In the case of this blog title, they actually do make sense.  Nine months into my cancer diagnosis -- and fourteen treatments along, I've started a targeted therapy only protocol (no chemo therapy).  The first targeted therapy (number one) was just three days ago.

Given the number of questions we've fielded about targeted therapy -- and how it differs from chemo, I thought it may be informative to dedicate a blog to answer (hopefully most) of the questions about this approach battling cancer.  Please recall the experts study this stuff for many, many years -- we've been absorbing as much evidence-based information as we can for only nine months.  This response is based on our short-research of the very long study of treating cancer . . .
  • The best explanation I know of regarding targeted therapy (absent a consultation with our super-hero oncologist), is from the National Cancer Institute:
    • Targeted cancer therapies are drugs or other substances that block the growth and spread of cancer by interfering with specific molecules ("molecular targets") that are involved in the growth, progression (my cancer currently is progressing), and spread of cancer.   Targeted cancer therapies are sometimes called "molecularly targeted drugs, molecularly targeted therapies, precision medicines," or similar names.  
      Targeted therapies differ from standard chemotherapy in several ways: 
      • Targeted therapies act on specific molecular targets that are associated with cancer, whereas most standard chemotherapies act on all rapidly dividing normal and cancerous cells.
      • Targeted therapies are deliberately chosen or designed to interact with their target, whereas many standard chemotherapies were identified because they kill cells (quite indiscriminately). 
  • Targeted therapies require the identification of good targets—that is, targets that play a key role in cancer cell growth and survival. (It is for this reason that targeted therapies are sometimes referred to as the product of "rational" drug design.)  Targeting does not depend on the location of one's cancer (somewhat counter intuitive, I know) rather on identifying the targets based on medical signs of what they (the targets) do.
  • From our first appointment way back in August, Dr. Rixe sent my tissue and blood samples to two agencies for analyses (CARIS Life Sciences and TEMPUS). The results provided pathogenic information, to which Dr. Rixe referred to develop my targeted therapy when my chemo became ineffective (chemo resistance is not unusual and targeted therapy very often is used (and is most effective) after an initial standard of care protocol (i.e., chemotherapy)). 
  • My new protocol targets two biomarkers (indications of medical state) that are involved in my disease progression: 
    • The first is a mutation of my B-Raf gene, which produces a kinase protein that sends signals directing cell growth.  My mutated B-Raf is spurring uncontrolled cell growth. The first my two new therapy drugs targets that mutated B-Raf (protein) to "reduce the volume" or (better yet) completely close down that signal transmission.  These are the four pills I take each morning.
    • The second drug is a monoclonal antibody designed to target a different protein associated with cancer growth: EGFR (epidermal growth factor receptor) which is usually high in in the presence of cancer.  EGFR "receives" epithial growth factor, and as such is a driver of cell proliferation.  The drug I receive for this is delivered via IV -- through my port, every two weeks.  It is a direct cancer killer that works to inhibit EGFR signaling, reduce cell proliferation and induce apoptosis (cellular suicide). 
Dr. Rixe's goal with the targeted therapy protocol is to get me to complete remission.  This is a cutting edge approach, which has produced good outcomes in Europe.  Dr. Rixe constantly collaborates with colleagues in the US and abroad regarding therapies -- and drug side effects (looking to minimize hardship for the benefit of the patient).  I am experiencing a whole new set of side effects now -- and adjusting my rhythm to adapt.

I know this has been a departure from how I usually blog.  However, I hope it may be helpful for readers trying to understand the changing terrain of our "Unexpected Journey."

In closing, I'll say this: Most people -- like Cliff and I -- arrive on the path already in motion.  We are learning as we go -- while trying to avoid the overload of info out there regarding cancer and treatments.  We generally get our info from four sources: The National Cancer Institute, The National Institutes of Health (particularly valuable for understanding therapy and clinical trial outcomes), Memorial Sloan Kettering Cancer Center in New York (the standard setter for many cancer protocols, and for colon cancer in particular), and of course, from the inimitable Dr. Olivier Rixe -- the super hero with whom we literally trust our lives.

And finally, I think whatever medical approach we follow, my job to show up as a worthy team member -- Every. Single. Day. -- (among our incredibly skilled team of doctors, surgeons, nurses and technicians and the abundant and love and spirit of the Warrior Team) continues to be integral to slaying this beast.  In that regard I continue to meditate, connect, cook and eat healthfully, exercise, dance, read, sew, enjoy the company of my amazing spouse and incredible canine family members and to live in this moment.  I never want to miss a second of this blessed life or an opportunity to express my boundless gratitude to the team.  Thank you all!!!

Quote of the Day:
“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”                        ~ Marie Curie 


Wednesday, April 8, 2020

Path Diversions

Every seasoned trekker understands there are many paths leading to any destination.  Sometimes we deliberately take a detour.  Sometimes we must make a new route.  And of course, there are those times when we suddenly find ourselves deflected from our course without any forethought.  Each diversion holds opportunities for discovery, learning and growth.  Our contribution to earning these gifts is, of course awareness.  In times of adversity, the wherewithal to remain aware can be challenged on a blind curve, obscured in a foggy marsh, or twisted by a new, unexpected mountain range.  We may question what steps brought us here . . . or worry about the future (really, there's no valuable energy in either preoccupation).  To return to the present we: Pause, breathe, appreciate this wonderful moment, and smile.

My Mala Beads -- Japa Meditation
On Sunday, we got it all: We rounded a sharp curve, with a hopeful expectation of what would come next. Beyond the bend, we stumbled onto an unfamiliar, fog-shrouded path; momentarily losing our bearings in the unknown.   Emerging from the haze, we found ourselves at the face of a new mountain wall -- without a clear footpath to the summit.  We can see moving ahead calls for breaking trail in a new landscape . . . such is the way of the Unexpected Journey.

There is a certain charm and motivation in diversions -- and perhaps most specifically in the business of breaking trail.  Untrampled ground demands presence and awareness.  Nothing is predictable, much is unknown (and unknowable).  We landed here: On a diversion.  It is only from here, that we can proceed.  And so we are moving forward, one moment, one step at a time . . .

The blind curve:
  • The results of my most recent MRI 
The foggy path:
  • How can this scan mismatch with my continually decreasing cancer markers?
 The new mountain wall:
  • My early remission is erased.  My cancer is progressing.

Quote of the Day:
"What lies behind us and what lies before us are tiny matters compared to what lies within us."
                                                                    ~Ralph Waldo Emerson

Progress Report: (Cycle 13, Week One)
  • The Friday scan revealed four new lesions on the right lobe of my liver.  None larger than the size of a pea, yet enough to kick my early remission to the curb.
  • This detour seems to indicate my cancer has become chemo resistant.
  • My super-hero oncologist was ready with a new plan when we met on Monday, which we'll begin on 20 April.  I'll start an all-targeted therapy protocol then.
  • Since COVID19 has closed all non-essential businesses (to include my hairstylist), Cliff and I together shaved my head today.  We didn't do too badly -- hair is about a half-inch all around.  Believe me, as thin as it is, the cut is the right answer.
  • We finished our NYT Spelling Bee early this morning (it's a TeamBoltz thing to achieve Genius status each day -- takes two!).  Then we danced to: "I'm Free (Heaven Help the Man)" by Kenny Loggins.  So much to celebrate.  Every. Single. Day.
  • I hand-sewed my own COVID19 cloth mask with my clumsy neuropathic paws.  New sewing machine is inbound! (Thank you, Marj, for making that happen!)
  • Spring is coming to Santa Fe and the days are glorious.  Last cycle, in addition to my treadmill workouts (yes, I'm adding short running intervals now), I joined Cliff and Illy on our 3.5 mile loop (slowly, but surely, I got 'er done!) 




VIA FRANCIGENA!