Are We There Yet?

 

Offa's Dyke Finger Post

Note: Most of the photos in this post are from our Offa's Dyke walk -- the 200 miles we completed just ten days before my cancer diagnosis.  We never blogged that trip.

In our trekking lives we've come to count on a litany of trail blazes, mile markers and finger posts to help confirm our place on the map, the trail and toward our destinations.  Where are we (exactly)?  What's the nature of the trail ahead? And often -- in the voice of our eight-year-old inner children -- Are we there yet?

The Unexpected Journey reliably has been bereft of such helpful information.  In the past 16 months we've learned the Unexpected Journey follows a path of unpredictability ruled by all that is unpredictable about cancer and its treatments.  No two days are the same.  Drug side effects can include all or nothing on a prescription info sheet -- hailing, as well, on any timeline (for example, usually skin issues show up early in the use of Panitimumab -- mine waited seven months).  Tumors can grow when markers are undetectable.  Neuropathy may or may not subside (oh, to feel my toes again!).  Our consistency resides in using our experiences (whatever they may be) to strengthen our resolve, refine our focus and remind us of what we really can accomplish (have accomplished).

It can be difficult to know where one stands on the Unexpected Journey

We accept that cancer does not follow the relative ease and efficiency of switchbacks.  Rather it is determined to lead us through the least hospitable of terrains -- and usually straight uphill.  Leaving us better prepared -- though perhaps quite spent -- for the next tough ascent.  In fact, we think cancer may have some Kiwi (New Zealander) leanings as we seem to be destined to slog determinedly through every gosh-darned mud hole and field of sheep shit in the realm!  But we've done it -- so we know we can!  Managing expectations and adjusting to a life of open curiosity has been our best approach.  Every moment, we are in the moment -- all else is unknowable.  And still, that little voice wafts in from the back seat (you remember), "Are we there yet?"

And oh my gosh -- miracle of miracles -- last Friday it felt like we finally got a sign!  

As you recall from my previous posts, over the last two months I've undergone two procedures: Trans-arterial Chemo Embolization (Oct) and Microwave Ablation (Nov).  In tandem, these procedures targeted the single tumor remaining on my liver.  The conditions for the procedures were ideal: Tumor markers well within the normal range since my surgery last February -- in fact, wholly undetectable since May; no circulating tumor cells; all metabolic and blood labs normal (actually, really good).  No other tumors apparent in scans.  And we found out on Friday afternoon, the two procedures resulted in a 98% reduction of the single tumor.  The remaining viable tumor after the procedures was described by my Interventional Radiologist  as a "sliver" about 5mm in length (still along the hard-to-access crest of the liver -- snuggled against my diaphragm).  

This result led my doc to recommend we repeat the two procedures with a slight nuance (no chemo delivered in the embolization) in short order with the goal of extinguishing the last detectable sign of cancer.  It's like my surgeon said last winter, doctors like to go for it when the cancer is on the run.  So, when?  Well, the second embolization is in two days (12/10), and a week later, the second ablation (12/17).  It will all be done before Christmas (at this rate, it may outpace our home renovation (ha!)).  

Definitely feels like solid footing on the right path.

The best news is that during the two-plus months since the procedures began, there are no signs of any new tumors . . ..  It is looking like this holdout may be the last.  So yes, we're dancing to Pentatonix holiday tunes these days. 

As with every step along this path, there are no guarantees . . ..  Still, my optimistic heart is following the signs of hope, encouraged by what we've accomplished so far.  And I'm sure I hear the heartening, lyrical and ghostly voice of my dad whispering (from the front seat), "Buddy, we are nearly there!"

Quote of the Day:

“Remember how far you've come, not just how far you have to go. You are not where you want to be (yet), but neither are you where you used to be.”

                                                                                 ~Rick Warren

Progress Update:

• As of 30 November, I'm off my targeted therapy drugs until at least 28 December.  After 15 targeted treatments (same number as chemo), I have strong signs of drug toxicity.  Dr. Rixe assured me this is a good time for what he describes as a "real break," since my markers are good.  Dr. Rixe is big on "pushing the envelope" -- so big in fact that Cliff once challenged him, asking if I am the envelope.  At this point Dr. Rixe said he was surprised I was able to stay on the drugs for eight months . . . 
• On 28 December, when we reconvene, I may or may not restart targeted therapy.  There is a chance Dr Rixe could be transitioning to a quarterly approach to watch my progress -- more to come on that.
  
• In just the week since I came off of the drugs, some range of motion is returning to my arms . . . and with a little finessing, I can dress myself (yay!).
• On Sunday night (three nights ago), we slept in our own room/bed for the first time in four months!  Seriously, the reno project is wrapping up . . .
• I'm continuing my modified Mediterranean diet with an extra dose of healthy fats to stay in ketosis.  I'm continuing massive supplements as ordered by Drs. Hooper and Winters.  I'm up to 20 mg of mistletoe therapy (and better all the time about those shots in the gut). I'm continuing IV Vitamin C at 50 grams once a week.  I'm on a 31-week Peloton streak.  I continue to meditate and benefit from energy work.  And even though I have yet to jump in our freezing pool, I am into cold showers (Thanks, Wim Hoff).  I guess all of this says that I'm continuing a fully integrated approach to our fight -- all supported by Dr. Rixe who continues to say, "Something is working.  Don't change a thing." 
• This week Cliff celebrates a birthday -- actually I think it is mostly me who celebrates his presence on earth and in my life.  He is a gift to me.  Every. Single. Day.
• And lastly, the new puppy is due to be born at the end of the week.  Puppy energy is heading our way this spring.
  
• Yep, we got this!  So grateful for where we are, for who you are and your support.  Thank you.
  

VIA FRANCIGENA!

Uphill in the Wind and the Rain

 

I know it's been a quiet span on the blog.  We've spent the last few weeks in a steady climb . . . only in the last few days have we been able to anchor our boots in scree, lean into the wind, deflect a steady rain with  bladed hands over wrinkled brows, and discern the culmination of the rise.  

It's not our first uphill slog in the elements.  There have been plenty . . . In particular, I recall a crazy day on the Pennine Way when we sang (in relentless repetition) all we could recall of Jim Croce's "Bad, Bad Leroy Brown."  Words we could not recall, we made up --  and soon we were staggering in collapsing giggles -- uphill, against the wind, in a driving rain -- to the top of Great Shunner Fell.  Nothing we did made the climb any less steep, the rain needles any less spiky nor the wind any less penetrating . . . but when I think back, what I remember is the fun.  It was our choice to sing and laugh.  It was the power of being part of a team (of two) who chose to smile.  And you know, when we reached the top, the rain turned to fog, which eventually gave way to a late day clearing sky.  I can't imagine whining and complaining would in any way have eased the climb.  There's no way to know how the hiking may have been different on a clear day.  What I do know for sure is that I cherish the memory of laughing through adversity.

And I've no doubt, there will come a day when we'll look back across the past five weeks of treatments and procedures, grateful to have made the decision to lean into the ascent, the wind and the rain, with all the humor and grace we could muster.  Over time, experiences of post-procedure discomfort, malaise, and nausea will give way to fond memories of walks with our dogs, high fives over achieving Genius level on the New York Times Spelling Bee, a spectacular take out meal and the continuous support of family and friends.  We truly are blessed.

Quote of the Day:

"Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.”

                                                                          ~Thich Nhat Hanh

Progress Report:

• My second procedure in just less than a month -- microwave ablation (MWA) of the remaining tumor on my liver -- went (according to Dr. Bennett) "technically perfect,"  to which he added with a wry smile, "We got a really good burn."  We'll find out how really good with a scan in a couple of weeks.  
• My marker test this week confirmed my CEA remains undetectable.  All metabolic and blood labs remain normal.  The joke is that I am the healthiest Stage Four cancer patient in town.
• My integrative medicine doctor has tailored my diet somewhat as a result of nutrition genome testing.  Turns out, I have a genetic SNIP (Single nucleotide polymorphism) that sees increased glucose levels with higher saturated fat intake.  So immediately I began to reduce fatty red meats and dairy (two key components of my KETO nutrition plan).  There will be no red meat and very little dairy going forward -- rather, more healthy mono-unsaturated and polyunsaturated fats.  No complaint from this quarter -- I'm back to a modified Mediterranean diet with ample healthy (plant-based) fats.  I'll stay in ketosis through fasting -- without the butter and bacon backbone!  This is a big yippee! 
  
• It's been a light stretch for my beloved HIIT workouts since the MWA -- still I'm on a 29-week Peloton streak!
• Another lifestyle adaptation recommended by my naturopathic oncologist is cold exposure to boost my cellular energy (viva la mitochondria!).  So it's back to my cold shower experiment from 2016 -- this time with the structure of the Wim Hoff Method   If Wim (the Iceman) is new to you, click on the link to learn about Wim and his Method.  Unconventional, yes . . . and just the change in tempo I need right now!  (Things were getting a tad "groundhoggy" after 16 months on the trail). So, forget that neoprene jacket . . . I'm headed into an unheated pool (at 6,600') in the winter.  My teeth already are chattering!
• And a puppy update:  The fall the mating was successful!  Our new puppy should be born between 10 and 14 December.  That means we'll bring our Brussels Griffon home at the (puppy) tail end of winter.  
• Otherwise: IVC continues weekly, the supplement list just keeps growing (the more we learn, the more we supplement) and another two-week Braftovi break seems to be somewhat ameliorating the discomfort and limited range of motion in my arms. 
• Bottomline: We're choosing to smile, lean in and trust that the sun will break through to shine on a fabulous view before us.
  

Via Francigena!

The Terrain is Always Changing

Over the past 15 months on this metaphorical Unexpected Journey, I've written about summit goals and en route trail objectives.  I've written about breathtaking views and in-progress pull-out dance parties.  I've written about the rewarding joy of presence along the path of awareness and the bounties of gratitude and learning.  

By my count, this is the longest break I've taken in posting a blog since I started.  It seems for the most part that I've covered the expansiveness of the Journey's terrain (and then some) in the last 49 posts.  Then I get a stretch like this last one that just goes to show, the terrain is always changing . . .

 Base Camp:

The week of the TACE (trans-arterial chemo-embolization) procedure, I spent most days in base camp.  Although my post-embolization syndrome symptoms were mild -- some nausea from the slug of Doxorubicin (the "C" of TACE), some referred pain from the procedure itself and a doctor-imposed break from workouts beyond easy walking (something about the femoral artery intervention . . . ) -- it still took some time and an intentional healing pause before I was ready to resume the trek.  

Back on the Trail (with a dose of humility):

And in my resumption, I was reminded that this Unexpected Journey includes the visually stunning and motivating grandeur of the trail ahead, AND the (rather in-my-face) hard work that every present moment of trekking across an ever-changing landscape requires.  Trekking, lest I romantically have colored it as less, can present some breath-sucking, limb-numbing challenges that demand an engaged, determined, unflinching mindset of progress.  It's on some of those hunched-shoulder, head-down, one-foot-in-front-of-the-other approaches -- when this climber is drenched in humility -- that I hail the mountain for her greatness and respect she will not yield to my steps.  There will be rugged terrain to navigate and confounding obstacles to negotiate.  The work is mine to do.  This journey -- unbounded by geography, prescribed routes or clearly delineated timelines -- chastens and champions this climber as surely as alpine spires, western hoodoos, Himalayan high ground and crags and cliffs on the Dark Continent.  It is my job to stay alert.  Stay present.  Stay the course with grace and curiosity.  And when things get really weird, to keep a sense of humor, let go and get over myself.

Such skill and mindfulness were essential in the week after the TACE, when I resumed the trek (to include my targeted therapy), and immediately noticed a root-y path underfoot:  For the first time since starting targeted therapy, I suffered the skin reactions of Panitumumab.  Who knows if it was somehow exacerbated by TACE, or if it was just a "thirteenth time's a charm" thing (I've now had as many rounds of targeted therapy as of chemo), but acneform dermatitis colored a stripe down my face from hairline to chin.  I know my reaction was pure vanity; still, I cannot tell you how happy I've been to be able to hide out under hats and masks!  Head down, watching the trail for these roots, I simultaneously was assaulted by a profusion of trail-choking limbs hellbent on pummeling my shoulders to submission (courtesy of my other targeted therapy drug, Encorafenib).  These days it takes two Boltz to get my shirts on and off as lifting my arms above my head is pretty much out of the question.  Chastened, but not broken, we can shake it off, smile, vote early and carry on.  What else are we gonna do?

My Trekker Rhythm Returns (Dale gets her groove back):

This week, I'm back on an unobstructed path across rolling terrain.  On Sunday I had a fabulous long walk on the tread -- virtually accompanying Cliff and our friend Marty on the loop hike.  On Monday, I turned in a nice HIIT power walk.  On Tuesday I resumed one of my sewing projects (this time it's Cliff's Warrior Jacket) and finished reading Where the Crawdads Sing.  This morning, I'm feeling a smooth calm energy that signals I've hit that luscious trail rhythm that soothes my soul and buoys my spirit.  And yes, I did dance to U2's Miracle at the end of my tread workout today!

Quote of the Day:

 "So far we've survived one hundred percent of our worst days.  We're doing great!"

                                                                             ~Unknown

Progress Report:

• TACE was a success.  The follow-up procedure (to eliminate whatever is left of the single lesion) is scheduled for 5 November.
• The Panitumumab skin reaction is fading -- fingers crossed next treatment doesn't wake it up again.  And if it does, my eyes will be smiling above my mask.
• 
  My liquid biopsy showed zero circulating tumor cells (signaling no ongoing metastasis).  This along with no colon cancer maker readings for six months and a strong basophil count (strong immune system) all point to a good prognosis.  (yay!)
  
• I'm on a 26-week Peloton streak. 
  
• The renno/remodel project continues . . . Granite install has been a major slowdown.  Hoping now to be done by Thanksgiving.
• Christmas puppy adjustment:  Unfortunately, there was no autumn Brussels Griffon litter with our
  breeder.  We're hoping now for a December birth and spring adoption.  AND, yours truly, who believes in puppy magic, now has a backup plan.  We're wait listed for another puppy (Papitese) with a local breeder.  Worst case now, two new pups.  In other words, there is no worst case!
•  Winter came early to Santa Fe this week with a snowstorm on Monday.  Illy is Snoopy-Dance happy!
  

 

VIA FRANCIGENA!

October Surprise

OK, since we're in a (heated) election year, I really couldn't resist today's blog title.  Still, I can promise you that all that follows is apolitical . . . 

Behold, the black rhino!

The surprise: 

It may seem that after 426 days on the trail, a trekker would have little left to encounter that could be surprising.  The Unexpected Journey, though, is chock full of unexpectedness -- and so, when running alongside the zebras, there appeared this week a rare black rhinoceros, we were surprised and curious.  We found her to be far less scary than one may expect.  Our black rhino sparked great interest, expanded options and created a sense of hopefulness and (as I explained to one tireless warrior) an undeniable ebullience that put a real pop into my tread hikes and HIITS!

How we found the elusive, stunning (though threatened) survivor: 

Saturday (3 October) was another scan to get a look at what is going on with my cancer (the alternative to my cellophane body musings).  Since the scan was on a Saturday, this time around (for the first time), I wouldn't be able preview the results before meeting with Dr. Rixe.  So on Monday (our only Cancer Center visit that absolutely precluded Cliff's presence in the room), Dr. Rixe shared with me face-to-face (and with Cliff on speaker phone) my latest scan results:

Dr. Rixe laid out the results as a “glass half empty / glass half full” finding (his French application of typically American metaphors can be comical).  But I digress . . .

Here’s what we learned: The remaining “appearance” on my liver did not wash away, rather it grew.  Bottomline: It was not necrotic tissue (in the glass half empty realm, I suppose we otherwise might identify this as the bad news).  It is, however, the only detectable lesion — there being no other signs of disease progression and nothing detectable beyond the liver (this being the glass half full / good news perspective).  Why something (a lot of?) what I am doing seems to be working and yet this lesion is able to stand its rhino ground (and grow) is at this point a mystery. So what to do?

Following the three-toed tracks:

To solve the mystery and extinguish the lesion ("with only one stone, we can get two birds," (another Rixe-ified metaphor . . .)), Dr. Rixe laid out a plan to take a local focus on this lesion with an interventional radiology (IR) approach.  Of course, he had started his day at 7:00 a.m. in consultation with radiology to review my Saturday results, discuss options, examine risks and benefits and coordinate a schedule to streamline action (same-day IR consult, next week procedure).  Again, I am so thankful for our shamanic, genius, seemingly indefatigable oncologist! 

The way ahead is to undergo two interventional radiology procedures over the course of the next month to eliminate the lesion (and simultaneously get a tissue biopsy).  The procedures both will be performed percutaneously (no open surgery, yay!) and are considered relatively low risk.  And best of all, in cases where there is no disease progression, the procedures can be curative!  I frankly never expected to hear that word again in relation to my cancer -- hence my jubilation.  Oh yeah, I'm a glass-half-full gal who still believes in miracles!

And we're trekking on:

Next Monday morning at 8:00 a.m., I’ll undergo the first of the two procedures to be performed by Dr. Shelby Bennett (click here for Bennett Bio): a transarterial chemoembolization (TACE), to shrink and dis-empower (my word) the resistant lesion.  About two weeks later, I'll have a microwave ablation (MWA) to zap the shrunken remains.  In the meantime, I’ll continue on all of my therapies (targeted and alternatives) exercising our “something is working” mindset.

So how am I feeling?  Positive, encouraged, supported, blessed and oh-so grateful.

Happily greeting the rhino!

Quote of the Day:

Don’t quit before the miracle! 

                                         Mom of Peloton Coach, Robin Arzon'

 Progress Report:

• My new energy boost is dancing on my tread at the end of workouts to U2's "The Miracle."
• Home reno continues apace -- we're hoping to be able to move back into our suite by Halloween.
• Plants are flourishing as the apricots are now inside and out, the poinsettias have retired to a less sunny spot (building their energetic holiday magic) and one lovely orchid remains in bloom.
• Got in only one pool session last week (hard to do with contractor comings and goings) -- love that neoprene jacket! 
• Have completed three months of twice weekly IV Vitamin C, starting once weekly IVs this week.
• KETO continues (ugh) as does mistletoe (ouch) -- but hey, something is working!
  
• And the medical stuff . . . well, I think you're on caught up on that! 
• Happy Hump Day!

 

VIA FRANCIGENA!

A Birthday Stroll

OK, so "The Stroll" as recorded by the Diamonds, predates my birthday by a couple of years. But it's too cute not to share for a Wednesday smile (check those bobby socks and penny loafers!). 

Strolling is on my mind because yesterday, when Cliff asked me what I wanted for my birthday (my second on the Unexpected Journey), I passed on a hike, preferring instead a stroll up Canyon Road -- a notable Santa Fe destination for fine art and dining.

For years we've walked up and down Canyon in all seasons (Christmas Eve on Canyon Road is down right magical), feasting on the shapes and colors that make "strolling a gallery" experience from start to finish. When we first moved to Santa Fe, I explained to Cliff that we would now buy less art, since we could get a walking immersion anytime we wanted, without impact on our wallets or home space (that sort of worked out . . . ).

So yesterday afternoon we celebrated my 61st birthday with a (purchase free) stroll up Canyon. It was a perfect autumn day framed by a crystal clear sky and floating on a crisp breeze. Weirdly, due to COVID, the normally congested Canyon Road was mostly quiet and still -- giving us the perfect opportunity to visit with one of our favorite Santa Fe artisans, silversmith John Rippel. In truth, I texted John before we headed up to make sure he would be in. It had been nearly a year since we'd visited and it was great to catch up. John made my concha belt in the photo.

Arts and the out of doors are just good healing medicine -- and we know we are blessed to live in Northern New Mexico. In the world of healing, we continue along the ups and downs of the trail -- AND we continue to show up (Every. Single. Day.) with our backpacks square on our shoulders and boots double-laced. We share an understanding that we can't choose the terrain, but we always can choose how we'll negotiate the obstacles and breathe deep the majestic views. That outlook is our formula for sustaining our healthy curiosity (versus creating boulders of fear, guilt or blame), flexing our growth mindset (seeing setbacks as learning opportunities versus pits of gloom and disappointment) and expressing deep gratitude (never taking for granted the joy of time shared and connections honored -- like our time with John yesterday). In many ways, our Unexpected Journey has allowed us to visualize a path of "deeper living," which grace our relationships with heartfelt patience, kindness and joy -- all experienced through words that never go unspoken, hugs that always meet willing arms and full attention to the little trials and celebrations that lace each day.  On days when the route is less clear, those are the margin notes true the path.

 Quote of the Day:

Patience is not the ability to wait. Patience is to be calm no matter what happens, constantly take action to turn it to positive growth opportunities, and have faith to believe that it will all work out in the end while you are waiting.”

                                                                                ~Roy T. Bennett 

Progress Report: 

• Last targeted treatment was not so bad -- just a little discomfort the day of treatment.  
• 23 unbroken Peloton Weeks -- I'm rockin' that tread!
• Still doing the 3.5 mile loop -- and tomorrow, I'll be joining Cliff and Illy for the Full Moon Walk!
• I recently found two new KETO cookbooks to jazz up my plan.  Eighteen weeks on the therapeutic ketogenic nutrition plan -- never out of ketosis.
• Our renovation project is moving right along.  The new uber-cool metallic gray tiles have replaced the black granite on one bathroom wall.  I keep going back into the construction zone just to relish the light!
• My latest CEA marker test was again below normal.  Continuing great news: Since my February surgery my markers never have risen above normal range!  Yay for that.
• A friend and fellow metastatic cancer warrior directed my attention to Cancer Commons, a non-profit dedicated to helping advanced cancer patient to learn about and access best treatment for the individual.  Cancer Commons's tailored approach and commitment to share information about what is being researched is incredible.  As a result of this organization, I now count a research scientist among my team of experts.   (www.cancercommons.org)

VIA FRANCIGENA!

Rocks, Nettle and Scree

Presence is a gift.  Presence is a practice.  All too often, presence seems elusive.  And sometimes, uncomfortably, presence is just a tweak away --

In a flash, one's physical environment (no matter how far the adventurer's mind has galloped ahead of her feet) can deliver a corporeal focus that jerks her back to the present.  For a hiker, a mind skipping to thoughts of work instantly will be transported back to the trail with the stab of a rock in the boot.  For a cross-country walker breaking trail, a mind skipping to the end-of-day pub visit can be reeled in by a burning brush with a proliferation of stinging nettle braiding the path.  For a trekker -- mind blooming with summit visions -- nothing says "be here now" like the required traverse of a long, near-vertical scree field.  

Somatic signaling can be, I think, an opportunity to open awareness and an invitation to gratitude.  So when, upon our return to our Unexpected Journey after our two-week drug vacation, I encountered staggering drug side-effects, we got still and present.  We knew we weren't going to shake this rock from my boot in a single step, so we didn't try to "think" it away.  The figurative brush with nettle would take soothing baths and cooling ointments to calm the stinging, so my heroic hubby delivered kindness, tea, gentle caresses and compassion to soothe the burn.  The scree field demanded our attention -- and reminded us the present moment is blessed by past traverses that reassure us we can handle this too.  And in this way, we are grateful for the moment (even the uncomfortable ones).  We are appreciative of our shared determination.  We celebrate each sunrise for its unique beauty. 

Smoke-hazed red sunrise (from the El Medio fire)

 We are reminded to progress mindfully as our journey continues and the present becomes the future.

This treatment cycle began on the anniversary of my first treatment, entry to chemo, in 2019.  In pre-COVID-19 days, my sister was here with me for that first round (so was my hair 😆-- up in a twist):

Deb and me, Treatment #1, 2019

A year later, 8 September 2020, it was dogs optional* and masks required.  In recognition of the day, I wore the same outfit --and added the sister's necklace Deb made for me so she could be with me again.  *In all seriousness, dogs aren't permitted at the cancer center -- even Cliff hasn't been able to join me in the chemo suite since March. 

Munro and me, Treatment #23, 2020

Quote of the Day:

Even in the mud and scrum of things, something always, always sings.

                                                                         ~Ralph Waldo Emerson

Progress Report:

• Life goes on in treatment cycle 23 (thirteen chemo + ten targeted therapy).
• Only one new tweak in process: I'm now intermittent fasting to "juice up" ketosis.  My fast is 16 hours fasting, then eating within an eight-hour window each day.  Cliff gamely has joined me in the craziness.  The idea behind the approach is to continue starving the cancer (Although Cliff says there's nothing left to starve).  Recommended by Dr. Hooper (integrative medicine doc)
  
• My Peloton streak continues unbroken and yes, I am now swimming in a neoprene jacket as the days get cooler . . . 
• I'm sewing again, this time Cliff's Warrior Jacket.  
• The next home project finally started today -- after multiple delays.  We've moved into our guestroom as our entire suite gets a face lift (the sound of demo is music to my ears -- good bye to black granite in the bathroom!).

VIA FRANCIGENA!

Time for a Vacation!

 

 

It's been a year and two weeks since I posted my first blog on our Unexpected Journey.  What a journey it has been so far . . . 

This week as a result of (again) perfect labs, no detectable active cancer on my marker tests, my physician's observation of my physical presentation and a calculated (by experts) belief that what now shows on my latest scan (one appearance) may well be necrotic tissue, I asked for (and have been rewarded) a two-week break from my conventional therapy treatment.  So what are we doing on our summer vacation?

Well, this morning we went hiking!  And it was glorious.  Not too tough (rolling terrain at around 6700' -- distance just a tad over four miles).  Oh the glory of lacing up hiking boots and hitting the (real) trail! 

The way ahead for now (and we discussed four options with Dr. Rixe) is to resume my current course of therapy after a two-week break (something is working 😀).  During my vacation break I am continuing the full slate of my integrative and naturopathic care.  As Dr. Rixe advised, "Don't change a thing!"  I must say, I'm a little tired of KETO world, but hey something is working, so make mine another super-high-fat green drink! 

As long as the weather holds, we are enjoying our daily pool plunges (considering ordering neoprene tops to extend the pool season) and I'm on week 18 of unbroken Peloton workouts!  

We're two weeks away from the commencement of our next home project (thank goodness for our project management experience since we're playing general contractor this time).  And we're loving cooking together, walking, reading, hangin' with the pups and daydreaming about our future adventures.  We are present.  We are joyful.  Life is good.

Quote for the Day:

The present moment is filled with joy and happiness.  If you are attentive, you will see it.

                                                                     ~Thich Nhat Hanh 

Progress Report:

• Blog will resume post-vacay (after 8 September)
  

VIA FRANCIGENA!

Too Much of a Good Thing?

Living in a place of deep appreciation and gratitude, I find it hard to have too much of any good thing these days (especially since wine and pizza are NOT on my nutrition plan 😀).

For example, I can never get too much of our beautiful Sangre de Cristo sunrises . . .

 

I find it is impossible to say "too much" to Barton's beautiful floral arrangements, which Cliff brings me every week . . .

 

I believe a girl can never have too many heroes . . .

 

 

Or too many zebras trotting by with satisfying news of quiet (healthy) progress . . .  

 

And of course, it is impossible to exclaim too much (unless in celebration) about CEA marker tests showing no disease activity (four consecutive months as of last week) . . .

 

Turns out, though, that I may have had too much of a cancer-fighting drug in my body . . . . 

My recent sensation of "skipping a heart beat," resulted in a series of EKGs, an appointment with a cardiologist, an echo cardiogram and a 24-hour session with a Holter Monitor.  I was in a bit of a quandary about whether to blog this or not.  I've always been transparent on my blog, and I know I have more followers than I personally engage (possibly other warriors), so I decided to be upfront with this news.  It seems Avastin, a drug I took through most of my first stage of treatment, has caused an unhealthy structural change in my heart.  We understood this drug was strong and carried with it some high risks.   We took all the steps asked of us (daily checking of blood pressure, keen observation for signs of heart problems . . . ) when I was on the drug between September and March.  And during that time (as usual for me), all my labs were assessed as "perfect" by my oncologist . . . but we couldn't see the stealthy damage Avastin was doing until  that "skipping a beat" thing started us down a new road.  According the drug website, 11% of cancer patients whose therapy includes Avastin experience side effects that "may include blood clots, mini-stroke, heart attack, chest pain, and (a) heart (that) may become too weak to pump blood to other parts of (the) body (congestive heart failure)."  

If you or a loved one may be introduced to a treatment protocol that includes Avastin, I urge you carefully to review the literature on the drug's benefits and risks.  In 2010, the FDA ruled that Avastin no longer is approved for advanced breast cancer because the risks were assessed to be greater than the benefits.  Despite the risks, it still is approved for other cancers (to include colon cancer), and can be used "off-label" by physicians.  My advice: Be an informed patient and exercise your power of choice.  In our case, we assessed I was very strong and fit coming into the disease.  That, in the end, did not protect me from Avastin's side effects.  This new finding will, for me, lead to additional tests and a need to be closely monitored for additional changes to my heart.

And, I will just add this: The cardiologist with whom I am working plainly stated neither he nor his colleagues previously have seen the combination of changes as they appear in my heart.  To say this will get worse, then, is more cardiologist conjecture than science based on any established patient patterns.  

In fact, it may or may not get worse.  I believe the body is an amazing machine able to function and heal in ways physicians sometimes cannot explain (miracles).  I am committed to living in the present and focusing on healing this body -- Every. Single. Day.  I have heard doctor after doctor say that the thing cancer survivors have in common is a strong, positive belief that they (we) will prevail.  In this household:  We are strong.  We are positive.  We are filled with purpose.  We will prevail.

Quote of the Day:

I am realistic -- I expect miracles.

                                     ~Wayne Dyer

VIA FRANCIGENA!

It's Just a Zebra . . .

You know by now that to celebrate our retirement from the army, Cliff and I decided to climb Kilimanjaro.  Having set that target years before we retired, we built out our dream as the time grew near.  In the end, we decided to take an animal viewing safari at the completion of the climb . . . hence the zebras.  Safari is fun and exciting, and after many hours/days looking for wildlife, the thrill becomes seeing what is NEW to the terrain.  Zebras, as it turned out in late 2006 Tanzania, were numerous.  Each day we saw many zebras.  And fascinating though they were, we were keen to spot some lions and leopards, hippos and hyenas, or warthogs and wildebeests instead.  You get the idea -- after about five days yet another zebra sighting was greeted with the tired refrain, "It's just a zebra."

And if you've noticed I am posting my blog less frequently, I'm afraid it's because we've reached a bit of a "zebra" phase.  We are looking for some exciting news . . . yet in the absence of the next scan, we just keep seeing zebras.  So many zebras,  in fact, that it is difficult to tell one from the other.  It's a steady and wondrous journey, that simply has hit a certain rhythm as we bump along eager for change.

So, when I am asked, "Can you tell a difference with the mistletoe?"  I think: Maybe, but it's slow change, so no lions here.  And, "How is the IVC going?"  I suppose I feel an energy boost after each infusion, but it's no warthog crashing through the bush.  Or, "What about the targeted therapy?"  Well, I can tell you that the side effects are cumulative, but without cellophane skin, I'm sighting no hippos of difference.

It's times like these, when on safari and surrounded by zebras, that mind shifts reveal an oasis of
sorts.  Mind shifts seem prime to follow flamingo flight, lifting from the water's edge, and teasing changes of perspective by degrees of ascent.  Two weeks ago, a member of my amazing warrior pro-team delivered just such a mind shift . . .

I was lamenting that I am approaching the one-year anniversary of my diagnosis.  My lamentation was built on the challenges of the past year . . . tests, surgeries, drugs, poking, probing, and all that goes along with lacing up one's hiking boots (Every. Single. Day.) on this particular journey.  In my expression of the passing of time, though, he heard something completely different -- progress.  His response, "Congratulations!" The unspoken reminder: Celebrate the constant of the zebras.

And I'll take that congratulations.  I have beat some pretty scary odds so far.  I'm still here, still eating, exercising, connecting, gardening, cooking, sewing and thriving in the midst of this disease.  Another beautiful warrior team member told me, in fact, that she doesn't think of me as a survivor, rather as a thriver.  I love that.  I am reminded, as David Servan-Schreiber, MD, PhD writes in Anti-Cancer: A New Way of Life, that statistics are information not confirmation.  While the 5-year survival rate is just 12.5% for my diagnosis, my job, is to find myself in that 12.5% -- and then to move beyond even that!  And you know what, I still believe I can!

Yesterday, I had to go for an EKG.  The tech was asking questions around why I needed the test.  Did I have other labs scheduled?  Was I getting ready for surgery?  Finally, I shared my diagnosis (something I was loathe to share with anyone beyond close friends and family for a long time).  Then I added, that I was coming up on my one-year anniversary of that diagnosis.  She stopped and took a long look at me (still wearing my shorts and shoes from my morning hike) standing tall and smiling; and smiled back, "Just proves miracles do happen!"  You bet they do!  Every. Single. Day. When we choose to celebrate every single zebra.  When we embrace avian mind shifts, and on lifted wing choose to focus on the living we have yet to do, MIRACLES DO HAPPEN.

Quote of the day: 

It is the obvious which is so difficult to see most of the time. People say 'It's as plain as the nose on your face.' But how much of the nose on your face can you see, unless someone holds a mirror up to you?

                                                                                 ~Isaac Asimov
Progress Update:

• I'm in Week Two of targeted treatment number seven.
• One year ago tomorrow, we returned from our 200-mile walk along Offa's Dyke, in Wales (a week later, I was in the hospital and the Unexpected Journey began . . . )
• I've completed a month of IVC (2 x week) and two months of mistletoe therapy.  Cliff is getting so good at those mistletoe shots, that I hardly felt the last one.
• My next scan is coming up -- fingers crossed.  In lieu of cellophane skin and being able to peek inside oneself, this is our only true indicator of disease status.
• I feel good most days -- but there's no doubt some drug toxicity starts to build after a year of chemo and targeted therapies.  
• I'm still up every morning around 5:00 a.m., bopping to my musical alarms Cliff sets.  I am happy to see every new day and have ideas and plans for the hours ahead.  I am connected, busy and optimistic.  And I am grateful.  
• And maybe the most exciting news: I've reserved a Brussels Griffon puppy from a litter due in September!  We should be able to bring him home in December.  What is happier than a Christmas puppy?  Life is good.

VIA FRANCIGENA!

In Order to See Birds . . .

. . . it is necessary to become part of the silence.  ~Robert W. Lynd

On the trekking trail, there is a lovely place of quiet that keens visual acuity.  It exists in the silent walking when there is space between trekkers and all chatter falls aside.  It also exists in the most companionable of moments between experienced trekking partners who need no words to communicate.

This practice of silent observation has enabled Cliff and me to collect vivid avian memories from the trail:  From the boot-eating (or really, anything-eating) Kia in New Zealand, to the (huge) sacred bird of Tibet -- the Lammergeier (perhaps best known for its practical and mythical (angelic) role in Sky Burials), to the world's largest flying bird -- the Andean Condor (regarded as a sun deity) that we sited on the way to the Choquequirao Ruins in Peru -- it is truly in the quiet of the walk that we see, truly see, the birds . . .

And yesterday morning on our walk (yep, I've managed the 3.5 mile up and down, dirt road loop of our community twice in as many days), our quiet was rewarded by the whistles and jeers of jays darting from pinon to cedar along the route at about the two-mile mark.  A bit further along, the delicate cheeps of finches so small as to perch on slender blades of tall grass caught our attention.  And as we continued quietly, presently, companionably, we celebrated the sight (though heard not a call nor rasp) of a single magpie we believe to be half of a mating pair that has frequented our property since early spring.  (I've grown to regard these magpies as good luck.)

The Unexpected Journey, too, is full of these awareness-raising, gift-giving observations born of a slower, more quiet life: Lingering over my breakfast tea to relish the morning light; watering my plants slowly with complete presence and celebrating new leaves, buds and height; sewing with absolute focus on the recipient of a project and my gratitude for our connection.  These moments (or moments like these) never were really out of my reach before now.  They never had to be reserved for experiences in far away lands and dedicated time frames.  It was my willingness to become a part of the silence that often was missing.  I could have done it, could have been more fully present.  I chose rather to surrender to the struggle of place and time -- pushing much action into the realm of the perfunctory.

How many birds did I miss in the business of getting things done?  It is a simple fact that for most of my life I've most valued my ability to "get things" (lots of things) "done" -- often simultaneously (read, quite often mindlessly).  For me, now, I find it soul-quenching to partake fully of a single experience rather than to get to the end of any day full of self-congratulations for all I have accomplished.  Surely, my schedule is unique to my circumstance.  However, this awakening need not wait for a crisis boost.  If this seems inaccessible to the busiest among us, I think the key is in quantity.  Pick one action (any one) each day.  Become part of the silence, fall into the place between space and time -- then look and listen for the birds.

Quote of the Day:

Overcome space, and all we have left is Here. Overcome time, and all we have left is Now.

                                                                  ~Richard Bach, Jonathan Livingston Seagull

Progress Report:

• This is an off-treatment week.  When we met last week with Dr, Rixe, we reviewed all the input and recommendations of Dr. Hooper (Integrative Medicine Physician) and Dr. Winters (Naturopathic Oncologist).  Dr. Rixe concurred with all recommendations except the timing for a treatment break.  My targeted therapy will continue into August before a break, which we hope will be launched with a clean scan.
• I now take a couple handfuls of supplements each day, which variously are directed toward boosting immunity, normalizing hormones, normalizing angiogenesis, detoxing the liver, fortifying the micro-biome and on and on . . ..   
• I've begun intravenous high-dose Vitamin C therapy two days a week, not only to boost immunity, but also to fight one of my particular cancer mutations.  This approach synergistically interlocks with one of my targeted drugs to fight that mutation, and to isolate and kill the other type of cancer cell targeted by my conventional therapy.  How cool is that?  If you want to learn more about this therapy, check out this National Cancer Institute link: https://www.cancer.gov/research/key-initiatives/ras/ras-central/blog/2020/yun-cantley-vitamin-c
• Mistletoe therapy continues with a focus on boosting my immune system for this sustained fight.  We still are tweaking the doses to get just the right reaction.  I think (just within the last three or four days) I'm feeling increased energy as a result of this effort.  Cliff (or as he insists upon being called, "Dr. Cliff") is getting pretty deft with those needles! 
• The Therapeutic Ketogenic Nutrition Plan continues.  For those foodies among us, this is a bit of a spoil-sport.  But hey, I'd be happy to do this for the rest of a long life. 
• Our household remains happy, balanced and grateful.  We appreciate all of our time together and little acts of kindness adorn each day.  We slay the New York Times Super Bee, jump in the pool each afternoon and laugh with an easiness born of the present.  And yes, we always see the birds!

Via Francigena!

Was I Dancing?

Kilimanjaro, 2006

"Dale, stop that," my darling spouse hissed from behind.

"Stop what?"

"Stop dancing!"

Whaaaa . . . was I dancing?  Maybe -- and, why the heck not?  Life was soooo good.  I'd just retired from the army and was making my way toward the Roof of Africa!  I took a look over my shoulder and saw poor Cliff surrounded in a cloud of PigPen-like dust.  We were making our way through a dusty bowl between soaring rock walls.  And I, kicking up my heels up to (no kidding, on my iTunes Shuffle) Mariah Carey's "All I Want For Christmas," was producing a puff of silty dust that cloaked all those on the trail behind me.

Lesson learned: It is indeed an experience of joyous flow to be in the moment; stay in the moment.  And sometimes it's best to step off the trail and give in completely to a mini in-the-moment dance party.  In fact, stepping off into an overlook jetty to surrender to a mid-trek hullabaloo can enrich the jubilation (and totally juice the flow).  Aligning and harmonizing a very present heart and head serves to focus and to honor that which must be savored before moving along.  Yesterday, we took a tiny side-step to do just that.  And in a moment of complete surprise, Dr. Rixe even joined us!

OK, so it was a little dance party in the onco-shaman's office only in the most figurative of speech.  I've never seen the special teams' captain dance . . . and really do not expect to.  But his eyes were dancing -- his eyebrows bouncing above his round (think Harry Potter, only rimless) eyeglass lens.  There was no doubt his COVD19 mask concealed a giant smile.  The scan results were in, and they were good.  Really good.  Last Thursday's MRI showed NO disease progression.  Half of the lesions on my liver are gone.  The remaining two have been reduced by half -- basically pared down to the size of two very small peas.  My labs were perfectly normal and my cancer marker (CEA) was once again (two months in a row) below any detectable range.  And I know, I usually wait 'til the Progress Report section of my posts to detail this type of info -- but ya know, this is just one of those times to jump off the trail and bust a move.  A little celebration is welcome here.  And we are due.

Dr. Rixe also was happy to inform us that I qualified for the clinical trial he mentioned during our last meeting, and should our current path get scrambled, we have a relevant (and very good) treatment option.  He asked how the mistletoe therapy is going -- and shared with us that he and Dr. Hooper (my integrative medicine doc) now are consulting on my care (yay!).  And perhaps the coolest thing Dr. Rixe said yesterday is that we can't really know exactly what has arrested the disease progression -- given all the conventional, integrative and complementary steps of the entire team -- but it is working.  Dr. Rixe has no need to be the saviour -- no ego.  Really, he's just a little bit magical.  His guidance to us: "Just keep doing all that you're doing." 

So yep, we'll keep:

• Dancing
• Learning
• Jumping in the pool together every afternoon
• Operating with open, flexible, growth mindsets
• Choosing optimism
• Celebrating our amazing warrior team (if you're reading this blog, you're likely a member)
• Committing to those things we have to live for (vs reasons not to die)
• Following a therapeutic ketogenic nutrition plan (that's just me, Cliff eats healthfully, yet not with my dietary limitations)
• Administering mistletoe therapy (think Cliff, with a syringe in his hand three days a week -- target: my belly)
• Practicing Blueprint for Health energy work
• Jumping on the Peloton to pedal with Denis, Sam, Matt or Robin -- or on the tread with Matty (sure others too -- but Matty is just pure human happiness!)  -- All HIIT for me, of course.
• Taking slow, leisurely post-dinner strolls with the dogs
• Savoring our often breathtaking Southwestern sunrises and sunsets
• Tending our plants
• Maintaining and renovating our dream home
• And talking excitedly about our next chapter

We know we truly are blessed -- and we are (oh so) grateful.  Every.  Single. Day.

Quote of the Day:

 Life is short, wear your party pants.

                           ~Loretta LaRoche (Stress expert and humor consultant)

Bound for Treatment #18

VIA FRANCIGENA!

Uniquely Unexpected

There are some aspects of the Unexpected Journey that truly have no clear connection to the experience of trekking -- to try to make the connection for the sake of the blog would seem contrived at best.  And while the current state of affairs, which I am about to describe, is unique to our current footsteps along the Unexpected Journey, getting here (and moving from here to there) definitely requires prized trekker mindsets and characteristics like: flexibility, optimism, deep belief in one's abilities, willingness to venture forth despite long odds/unknowns (accepting possible failure as an opportunity for deep learning and growth), curiosity, perseverance, passion, team-orientation and spirited joy in the present.

On my way to Treatment #17

I said from my earliest blog (now forty posts, ten months, seventeen treatments and two surgeries ago), "I know I can do this!!  I am NOT a cancer victim."  Back then, I identified myself as a cancer patient . . . but really I have been a cancer warrior from the start.  And in that regard, I also now recognize (with the help of my amazing partner, Cliff) that although this cancer is a part of me, I am not at war with any part of me or my body, rather I am endeavoring everyday fully to understand the terrain, and adopt the battle tactics that will extinguish (or at least lay dormant) my cancer.  I never have felt as though I would die of this disease.  That does not mean I have moved forward without experiencing fear (at times intense fear). 

The plain truth is: I didn't get the surgical cure in February.  I've had setbacks (likely not the last) of accelerating cancer markers, scans that showed disease progression, crappy treatment side effects and knowledge of a pretty evil genetic mutation that's crafty in changing its tactics -- forcing us to keep changing ours.  I've had meteoric emotional highs and some corresponding lows.  And I've learned how to achieve equanimity (a practice, not a perfect).  And through it all, I wake up each day grateful for my life.  I remain determined to understand and combat the manifesting causes and symptoms of my cancer and to win. 

For now, our curiosity, flexibility, belief and willingness to explore have led us to tweak (in some significant ways) our path.  For example, over the course of forty posts you've become acquainted with many (most) members of the amazing warrior team, to include the team of medical professionals.  And in this post, I am thrilled to be able announce we are expanding our ranks to include an integrative medicine physician -- and a naturopathic oncologist with whom she will consult in my care.  And perhaps the very BEST news about this expansion -- is that my super-hero, onco-shaman, special teams' captain, Dr. Olivier Rixe, is enthusiastically onboard with the team expansion.  Just today, I was reading a book by an acclaimed cancer nutritionist, who was musing about a best-case time in the future when conventional oncologists and integrative medicine experts would work together in managing cancer.  I was reminded how fortunate I am to be working with open-minded, collaborative professionals who put warrior care above ego or recognition.  And even better, they welcome Cliff and me as team members (not pawns) by championing my involvement in my care, listening with interest to our concerns/ideas and never dismissing our questions (and yes, we show up for every appointment with a list!).  For us, the time is now, the team is topnotch and we have the perseverance and passion (aka: grit) to trek on.  Being a part of this powerful, determined and dedicated team fortifies my determination to show up (Every. Single. Day.) with energy, focus, resolve and commitment to thrive.

For more tweaks, check out this post's progress report.

Quotes of the Day:

The secret of change is to focus all of your energy, not on fighting the old, but on building the new.  

            ~Dan Millman  (from "Way of the Peaceful Warrior")

The strength of the team is each individual member, the strength of the individual is the team.

                     ~Phil Jackson (former NBA player, coach and executive)


Progress Report:

• Treatment #17 (week 1). 
• Scan and new marker test are scheduled in two weeks (hopefully marker and scan results match this time -- and both show NOTHING!)
• Dr. Rixe began steps to screen me for a new clinical trial focusing on cancer and the microbiome (more and more research indicates a strong microbiome-cancer connection).  This is a back-up plan only.  If we have success with the current protocol, it may never be employed.  Still, I love that my oncologist doesn't sit back on anything in my treatment.
• Mistletoe therapy begins in nine days.
• I've switched to a Ketogenic nutrition plan designed specifically for cancer patients -- suggested by my new doctor on the team.
• I've converted the "Triple T" training plan into a high intensity interval training (HIIT) plan -- also upon the advice of my integrative medicine doc, who pointed out endurance exercise is actually recognized as increasing inflammation in the body (another metabolic factor in cancer).  You know, I read about this when I was training for my IronMan a decade ago.  I decided then to dismiss the research.  Oh, how a change in vantage point can open the mind!
• I've been in the pool most days for the last two weeks.  It is great exercise and super therapeutic -- especially since Cliff joins me each day layering the water with kindness and compassion.  
• The apricot seedlings now are busy growing into samplings in new, larger pots.
• I'm putting the finishing touches on the next-to-last of the warrior princesses sewing projects.
• And yes, I'm still feeling good -- and super positive, strong and determined. 

Orchid blossom number seven opened this week!

Twentieth flower arrangement from the amazing Barton's Flowers in Santa Fe (Thank you, Steve, Ruth and Melinda for your care in designing and providing the most fabulous (and fabulously fresh) arrangements.)

 

VIA FRANCIGENA!!