Viva la Mexico!

It is no typical Saturday night in Tijuana.  The loud partiers and sirens might be typical, but the fireworks and shut down streets full of vendors and live music aren't.  It just so happens that our one weekend here is Mexican Independence Day.  This is a more significant celebration that Cinco de Mayo, as the link explains.  Cars are honking outside our fourth floor hotel window at this moment and the fireworks have been over for well over an hour.  Mom and I decided to celebrate by battling with Kings and Queens of our own in a few fervent games of Gin Rummy.

This trip to Hospital Angeles has certainly been different than the last.  Instead of frequent trips to the ozone sauna we are taking frequent trips from our hotel to the hospital for meals.  We've opted for two organic meals a day at the hospital cafeteria and we walk the lengthy four city blocks back to the hotel afterwards.  We've made numerous trips to the grocery across the street and spent this morning roaming the Mercado Hidalgo.  It's highlighted in this interesting NPR story!  I will say I've grown a bit tired of our routine and if there's a next time with similar treatment plan I'll do it differently by staying in San Diego (where it's easier to hang out on the beach) and make the occasional trip across the border for treatment.

When we arrived on Tuesday my blood was quickly drawn and we were told the first treatment would be Friday.  That treatment consisted of a five minute IV of NK cells and a shot of interleukin.  The interleukin stimulates a fever response in the body, thus stimulating malignant cells in a way that "red flags" them for attack from the Natural Killer cells.  I will have my second and final treatment on Tuesday in the same fashion.  This protocol was part of my original treatment here, but I'll be taking something different home.  Apparently my blood chemistry had markers making me a candidate for an Autologous cell factor treatment.  I will get further explanation of this on Tuesday, but the gist is a series of subcutaneous shots for the two months following this download of NKs that will stimulate the growth and production of these cells in my immune system.

This is really far out stuff and the skeptic in me raises an eyebrow at a price tag of $8000 for two five minute IVs and $3000 for some shots to take at home.  As mom and I discussed, we've come to expect some sort of drama with spendy hospital stays.  It's like that way we feel like we're getting our money's worth.  I remind myself that there is so much going on behind the scenes in the lab with equipment that far exceeds my understanding, even with an owner's manual.  And the big truth is the proof in the pudding.  The fact that my last biopsy showed only a 19% cancer blast count when my oncologist in Junction expected it to be in the 80% range says a lot.  If I only had 20% properly functioning cells in my bone marrow the exclamation I'd get from people when they see me would not be, "Wow, you look good!"  I like hearing that I love living it.

The biggest piece of missing info that I'm itching to know is my whit blood cell count.  As I've explained in past blogs, counting my WBC has become a weekly past time of mine.  My last CBC before departing Colorado showed a whopping 2.5 (parameters for healthy WBC is 4.0-10.0).  This was the second highest it's been since February and the 0.8 jump was double any increase or decrease I'd experienced.  A snafu temporarily sunk my spirits Friday when the results I requested from my blood draw showed a WBC of 1.1.  The half hour of distress quickly dissipated once I realize I was looking at records from my original arrival.  Keep in mind it's all in Spanish and takes a while to decipher!

So, as Mexico celebrates its independence, this date that signifies the start of the revolution against the Spanish, I too am caught up in a bit of internal revolution.  This blood and marrow of mine that was once peacefully settled by happy and healthy red and white blood cells faced a critical invasion by malignant cells.  Now, inspired by the words of NK Hidalgo, they've taken up arms to reclaim what is rightfully theirs.  I can hear them now... "Viva Zachariah!"

Here's the scene outside our hotel window this eve:

Return to Angeles

Last night as I was drifting off to sleep my phone reminder chimed at 9 o'clock.  I dismally turned to silence it.  Before long it was chirping again, our 7am wake-up.  After ten hours of sleep mom and I are both feeling in about the same condition, out of sorts and groggy.  There's that phenomenon of finally getting that solid restful night of sleep.  That trigger in the body requesting MORE!  So, needless to say I stare at my computer somewhat glassy-eyed knowing I need to let it go for the time being.  However, I did want to put out a quick update.

Our US Air flight from GJ to San Diego via Phoenix was smooth and after a short wait curbside we were shuttled seamlessly across the border.  It amazes me how different things can be in the distance of a few short miles and a line marked by barbed-wire; cell phone signal, store fronts and driving customs to name a few.  As we entered the familiar lobby of Hospital Angeles I reflected on my moments of frustration the days prior to departure while attempting to navigate the details of this trip.  Clarity and follow-through are not strengths of this facility while patients are abroad, but I knew we'd be taken care of upon arrival.  I was right.  We weren't a dozen steps in before we were met my our striking (in my biased opinion) International Patient Coordinator.  We worked out details and payment and were escorted to Dr. Perez's office.  Along the way we bumped into Dr. Perez, in his soaked gym clothes carrying a small office table.  Not the first impression he wanted to make, he later explained to my mother, but I think we both appreciated the glimpse of the real person behind the usual lab coat.  At the office seventy mL of blood were extracted from my Hickman port and we were told the next appointment would be Friday for the first dose of NK cells (see past blog for details).  At that point other possible treatment options would be discussed as well, depending on breakdown of my current blood chemistry.

This visit down is being done on an outpatient basis because of the less strenuous treatment regime and to keep me out of the hospital as much as possible due to my still low WBC.  It is saving a bit of money as well.  We are staying on the 4th floor of the Camino Real, about a fifteen minute walk away from Angeles.  We bought some basics at the grocery across the street, but are having most of our meals at the hospital to keep me on the proper balanced diet of organic fruits and veggies and appropriate proteins.  Our game plan until Friday is pretty much to hangout, rest, read, write, and walk.  I think we'll throw in some games of cribbage and gin rummy as well.  Truly, it's mom and son time.  Here we are after breakfast this morning:  

Fundraising: Aspen Insight

Thanks to everyone who attended my Poetry Jam on Sept 6th (details below), it was a very inspiring event for me.  I have a limited number of framed poems still available from the event available at Orr's Trading Company downtown and they will be offered at my upcoming Poetry Jam & Silent Auction.  In addition, I will have signed unframed poems available for donation.  Though the aspen leaf season has passed I wanted to post this poem which is one of my favorites.  Inspired during my first autumn in Colorado!

Aspen Insight

Following flight, a leaf’s delight, the wind is their cue,

together they dive, they are alive, remorseful are but few.

Like a winter storm, though reflecting warm,

all sharing a golden personality,

but differing hues, in the paths they choose,

each expressing an individuality.

One may drop, as if to stop, under an invisible chute,

another may glide, never changing stride,

with a landing completely mute.

Too many will band, in a rush to land,

forgetting to gaze as they dash,

but a favorite few, following a spiral corkscrew,

 “kerplunk” with a shiraz splash.

There are those that stumble, in a dizzy tumble,

wishing they knew how to flap,

and there are even two, who must have knew,

their target was my lap.

With a glance between, they must have seen,

my curiosity in their end,

and as if they sought, to share their thoughts,

they beckoned my ear to them:

“It is not the end, my friend, if you speak of dying,

for that is something we do not know.

We live to grow, and we love to show,

our brilliance in the flying.

There is a way we live, and a way we give,

that brings balance to our soul,

we nourish the tree, that lifts us to see,

just how far we’ll get to go.

And when the time is right, we take our flight,

dancing our way to the ground,

we have many reasons, to give-in to seasons,

for next spring is where we’re bound.

We’ll be born anew, reach a higher view,

a new flight will be given,

we grow and we share, we give and we dare,

to call heaven the place that we’re livin’.”

And suddenly they hopped, with life they dropped,

to find their place of rest.

I sat back to think, and let it sink,

all that they’d expressed. 

In my humble mind, all I could find,

that I was heaven’s guest,

and how we love when we live, and the ways that we give,

are the ways in which we’re blessed.

---------------------------------------------------------------------------------------
WHAT! :  An evening of poetry with Zachariah

WHEN! :  Thursday, September 6th, 8:00pm

WHERE! :  Yoga West Collective, 1025 Main Street, Grand Junction

WHY! :  I'm raising money to go back to Mexico for cancer treatment

WHY? :  This blog explains it pretty well

DETAILS:  I'm a bit of a closet poet and a shy performer when it comes to reading my own work.  I've decided to share a number of poems I've written over the years and will include readings/performances from other favorite authors, poets, musicians.  This will not be stuffy intellectual bantering but more of a flowing, energetic and entertaining exhibit.  In addition I will have 40 framed copies of one of my favorite poems, Aspen Insight, that is appropriate to this time of year.  Here's a sneak peak: 

I have a variety of frames and am asking for a minimum donation of $50 for the basic frames and $75 for the fancy ones.  After the poetry reading they will be available at Orr's Trading Company and Main Street Mineral and Beads downtown.  If you are outside of Grand Junction and would like a framed copy of this poem please contact me.  I will update this blog page with further details after Thursday night's gathering.  Thanks for your support!

Navigating Paradigms

I’ve been thinking a lot about death lately.  At least I was.  Nothing like a trip to the doctor to instill dread and fear into one’s depths.  Who looks forward to a trip to the doctor?  I assume not many.  Why is that?  If we aren’t feeling well or are experiencing grave illness, shouldn’t we be excited about going to see someone who will make us better?  I would say the answer is yes, right?!  So I repeat, why do the majority of us dread going to the doctor?  Perhaps you can sense the foreshadowing in a loaded question…

Those that have been following my story know that after my trip to Tijuana in June for Bio-immune cell therapy I have had a relatively energetic and enjoyable summer.  A strict diet, supplement protocol, and arthritic symptoms in my joints and tendons have made leaving the house a much more tedious endeavor than usual, but it has been worth it.  I put off a pending bone marrow biopsy to prolong summer bliss in Montana, but upon returning it’s been time to face the music.  Larkin is back at work enlightening 7^th graders to their mathematic capabilities and I am again facing the problem of malignant cells crowding out my healthy ones in an apparent effort to push up daisies. 

In returning I faced the drill and a fifth hole in my iliac crest to obtain the most crucial information in this process, the leukemia blast count in my bone marrow.  Following my second round of chemotherapy in early May my blast count was at 17%, dismal results in the eyes of my oncologist.  I was the second patient in her 25 years to not experience a remission after two rounds of chemo.  “You are quite a unique individual,” she commented at my last appointment.  We had been discussing my latest biopsy and its 19% blast count reading.  She explained that she’d expected my counts to be in the 80% range due the acute nature of my diagnosis.  “I’ve never seen a case like yours and want to refer you to the specialist at University Hospital.”  I know I didn’t need to, but I reminded her about my trip to Mexico and the treatment there.  Giving it very little credit she suggested, “Whatever they’re doing seems to at least be keeping you steady.”  I agreed to a trip to Denver desiring another opinion with hope that the science-based institution might have experimental procedures for a case as “unique” as mine.

The question of my blast count is an interesting one.  Has it remained relatively steady or did it drop after my Mexico treatment and is again on the rise?  A rising count would deem more immediate attention, nevertheless, there is no question, more treatment is necessary.  According to a number of opinions it seems reasonable to assume that the semi-debilitating issues with my joints are not cancer related.  However, I have felt more recent bone pain and tingling.  It is not severe, but it is a sign of the cancer process and warrants personal concerns.  It is time to make another move. 

With resistance and concern whether the trip would be worth the cost and time, I packed up and drove to Denver last week.  This was my second visit to University Hospital, though time on the road is unfriendly to my body, I was happy to be driving as opposed to the last time when I was delivered.  I had requested a phone consultation but was rejected due to the “impossibility” of it.  So, I found the appropriate check in, deposited ten vials of blood and was soon seen by the doctor.  Five minutes into the discussion I literally felt the weight of dread sink into my body.  I breathed deeply and reminded myself that I was only gathering information and asking questions.  No need to get emotionally involved.  Easier said than done…  Like a tape recorder he repeated the same treatment plan that I was already aware of and relinquished any hope of experimental treatments.  He listed the five major potential complications related to an allogeneic bone marrow transplant, the arsenal of medications involved, and the glaring reality that if I could not achieve remission via chemotherapy there would be no point in moving forward with a transplant.  He repeated the statistics precisely as my local oncologist had.  At this point, I was looking at a 20-30% chance of remission after a “salvage” round of chemo followed by a 50% chance of a successful transplant.  And, the interpretation of “successful” is certainly open for discussion.

So, as a past middle-school math teacher I quickly figured it out in my mind.  If I have ten marbles and three of them are green (30%), and out of those green marble only half would survive a transplant, and the suffering and lasting damage that would come from those treatments… (can you see where this is going?).  To go that route I would have to lose my marbles!  At the point of our conversation where he inquired about my “alternative” treatment in Mexico I divulged what I had experienced.  And, like a well-trained product of the AMA he retorted the same canned response every other allopathic doctor has.  “The problem with these alternative treatments is the lack of scientific basis and I’m concerned they’re just trying to take your money.”  Problem is, like the rest, he had no interest in looking at the scientific-based treatment procedures I had copies of in my folder.  And yes, it is expensive.  But, if you consider a two-week hospital stay inclusive of all treatments with organic meals at Angeles Hospital was less expensive than just room and board for my first two weeks at St. Mary’s Hospital, it leaves one wondering who the real money grabbers are.

I wallowed in fear and dismay for the next two days planning my funeral.  What words I would write so my loved ones would take the occasion to celebrate me and not mourn throughout the depressing occasion.  What music would I want played, I keep putting off making that playlist.  There is that favorite Ben Harper song that always makes me cry and Soulshine by Franti ‘cause that’s my song…  Fortunately, I was rescued by Dr. Perez, the head oncologist at Angeles, during our scheduled phone consultation while on my way back from Denver.  Intelligent, optimistic, enthusiastic and personal; talking with him about my blood counts and biopsy and their treatment plan brought hope and energy back into my being.  Seriously, beyond business, he inquired about personal concerns, shared success stories of other leukemia patients he’s treated, and shared tangents on being a husband and father.  In my own mind I’ve questioned how real the optimism is that the doctors at Angeles always offer.  I’ve realized, it doesn’t matter.  They understand what a potent remedy a positive attitude is and they instill it in their patients.  They realize all aspects of curing disease and are not policed by a pharmaceutically-based governing agency.  And, they are not trying to take my money.  Dr. Perez suggested an outpatient approach to my next visit.  First, he wants to keep me out of the hospital as much as possible due to my low white blood cell count.  And, second, you can imagine the price difference between staying at an affiliated hotel as opposed to a hospital room.    

Needless to say, I am in a position where my choices are clear.  I can let my insurance pay for a debilitating treatment, filled with pain and suffering, with slim odds of success.  I can continue to navigate my own treatment with diet and supplements and slowly add songs to my before-mentioned playlist.  Or, I can figure out how to pay to go where there are doctors who are using cutting-edge science, who understand how true healing works and who truly care for the wellbeing of their patients.  That’s where I am going, and I am going next week.  My parents are onboard and my mom will be joining me on the trip to Mexico.  They have offered to take out a loan on their house to make it happen; it hurts to think about them going to that extreme.  I am asking for help.  If you can donate I express my gratitude in advance.  I am also attempting to orchestrate fundraisers with the help of friends and family.  And, as I state on the heading of my blog, I spend time writing and sharing my process as a way to educate and give back.  Please read the top of my blog and check out the fundraising links.  With humility and love I thank you for reading what I offer.  

PS- I am holding a fundraiser this Thursday night.

Fundraising: Mom's Aprons

My sweet mother has labored intensely making aprons in order to raise money for my cause.  They have gone quick amongst her friends in Missoula.  Now's your chance to get them in Grand Junction!  The asked donation is $40 for these one of a kind, hand-made, in the family, practical and stylish gifts.  Call me to see the selection, first come, first serve.  Whatever is left will be available at December 6th's Poetry Jam and Silent Auction.  I can be reached at 970-901-0150.

What a way to dress your favorite chef!

Here are some ideas of what's available: