A lot has happened since my last update -
great stuff... & not so great stuff. I’ll try & get everyone caught up
with the SAVE MY ASS campaign.
As I rounded the final week of my treatment
in Mexico, Christian & I realized that I was going to live & that I
actually had a good chance to THRIVE. I know that sounds dramatic & over
the top, but neither of us had ANY idea of how my body would react to suddenly
being thrust into cancer treatment. It was truly an eye-opening revelation.
Remember that this wasn’t “conventional” Western, cancer treatment; this was
natural, vitamin driven, detox oriented cancer treatment. But it also included
some blood cleaning, temperature cranking, & Immunotherapy vaccines. My
first vaccine was an absolute kicker - it beat my ass, but I did fine with the
remainder of the vaccines. Remember that I walked in feeling perfectly fine
with NO symptoms of my Stage IV terminal cancer. I’d been told back in April
that I’d be dead by September without undergoing full, systemic, debilitating,
chemotherapy. How could we have made plans for October? Therefore, once we
realized that I would be returning home as “fully functional” & even
strong, we made airline reservations during our final week there &
committed to attend the kiting convention a few weeks later in Ocean City,
Maryland. It was life-affirming!
After 10 days of dormancy at home in order
to recover from the hospital, I began the first group of oral supplements. My
new treatment doesn’t completely reject
all “conventional” cancer treatments in the mix with the supplements. I began
taking very low doses of two types of oral chemotherapy, also. Some patients
were completely against it when they were prescribed chemo - even low dose
& oral, as they had previously received devastating dosages via
conventional IV treatments prior to attending Oasis of Hope... I completely
understand! At first, I was reluctant & actually quite discouraged at being
directed to take chemo, but I was told that it was simply an adjunct therapy in
addition to everything else that was targeting my cancer. If I was afraid of or
averse to it, I could skip it - it wasn’t the whole ball of wax. This was a
case of throwing everything at my cancer that they can. I would carry no risk
of hair loss or even nausea with this low a dose. Okay... I’m on board. So,
after the 10 days, I began my oral regiment. Group 1 contained xxx number of
pills, Group 2 added an additional xxxxxxx to the existing Group 1 pills. Then,
Groups 3 & 4 were added to the baselines of the first two Groups within
days - making for a total of about 55 pills a day. Try THAT on for size! Two
things to take 1/2 hour before each meal... that removes 6 of the 55 that are
required DURING the meal. Then, an additional 6 per meal that need to follow 1/2
hour AFTER a meal. Remove 12 more from the “during meals” category. So, we’re
down to gulping down about 12 per meal - with an additional 4 pills to be taken
at bedtime. Factor in that these 12 must ALL be taken with food, otherwise one will suffer socially
embarrassing consequences such as liquid diarrhea or throwing up in the closest
repository, & the social implications of overeating at each meal become
acceptable! I don’t DARE get it wrong or extend that 1/2 hour window for fear
of catastrophe! Plus, it bears mentioning that these calculations are enough to
befuddle Einstein! Each type is listed as “2, three times a day”, “6, two with
each meal”, “Monday -Friday only”, “take for 2 weeks on, then one week off,
& repeat”. Plus, as I mentioned,
with each additional Group, the quantity expanded exponentially. Yeah, I consider myself to be
pretty clever, but I dropped the ball on one instruction! During the kiting
convention, I mistakenly only took 2 of one of my directed chemo doses, when I
SHOULD have been taking 2 doses, of 2 pills, twice daily. In hindsight, I’m
glad that I (although inadvertently) made that mistake. I realized it after we
reloaded my massive pill containers once
we were back home. At that time, I made the correction. But between THAT extra
chemo dose & a Vitamin C “dissolve in water before each meal” cocktail -
which was just TOO inconvenient to carry into restaurants, my body has NOT
tolerated one of them well at all! Therefore, I made it through the kiting
convention very well, with no socially shocking incidents, even though some of
my dosages were accidentally overlooked!
The kiting convention was great! I didn’t
burn the candle at both ends (which I kind of missed!), but I didn’t really
miss too much!!! The weather wasn’t cooperative, so it made for more long
visits at the Brew Pub & less overall shenanigans - which was perfect for
my current condition! We were able to help administratively with registration
set-up & break down (MY area of expertise), & Christian was able to
teach not only his scheduled classes but he retained the classroom for drop-in
questions & additional assistance (HIS expertise). We had breakfasts with
Crew A, lunches with Crew B, & revolving dinners with many friends. When
the rains drove us inside, we generally just extended the lunches & dearly
enjoyed the fellowship of kiting friends. In all honestly, it may not have been
our goal for the week, but it was perfect! Tuesday was a great day for flying -
although I had to be hat-covered due to medication-driven photosensitivity (I
was fine!... & I have a VERY cool kiting hat!) - I shot great photos from
the sea wall all day. The Wednesday, Thursday, & Friday weather sucked -
although the outdoor judging of handmade kites proceeding in the miserable
conditions of rain & high winds on Friday; & Saturday opened up for
open flying on one field & Sport Kite judging on another. I was able to
return to my roots in the Sport Kite tent. I wasn’t needed to help judge, but
just being there got me back in touch with my core, my “roots”. It was home...
& I was just so happy to be there! Of course, the final day was Saturday
& Sunday came way too soon, but we’d experienced a wonderful week! We
stayed in town an extra couple of days, which allowed us to help pack up &
even have more flying time on the beach with friends for Christian, & some
extra visiting time at the beach-side bistro for me.
Eating the proper food while on the road was
more difficult than I expected! I thought, “EVERYONE has a simple salad on
their menu!” Au contraire!!! You can get it with bacon, or nitrous meats, or
cheeses, or Caesar dressings. But lettuce & tomato are just too passé for
most fares! Breakfasts? We found a veggie omelette option, which substituted
strawberries for all of the high-gluten, high starch products such as hash
browns, toast, & grits. But my willpower’s just not strong enough! Dear
Phillip Whitaker always cut off a corner of his pancake & quietly slipped
it over to me! I can’t quite parley that into a reason to live, but it was
extremely motivating!!! Yes, I had some Caesar salad, & even some thin
crust spinach pizza; but I also carried around packaged simple salads from the
grocery in my bag, with oil & vinegar, tomato & cashews every day.
Plus, there were quite a few times that we had instant oatmeal in the hotel
room instead of meals out. All things considered, I think we did quite well!!!
I’m telling you, I think I would rather cheat a bit, even fall off the wagon
occasionally, now - during THIS trial period, rather than after I’ve been
re-assessed in late November (more on that later). This way, I know that I can
fluctuate a bit or I still have a bit of room to be more strict if necessary
& to pull back. We’ll see...
Now, we’re back home. I’ve realized my
mistake with the oral chemo doses & have added the repeat dose of my second
type, plus the
“too-weird-to-carry-around-into-a-restaurant-&-mix-in-water-1/2
hour-before-meals” Vitamin C powder (one of which is tearing up my tummy!).
This will continue until we return to Oasis of Hope for a comparison of my PET
Scans from August 1st to mid-November. I’m playing a game of cat & mouse in
an effort to determine which medication is tearing me up. I’ve heard from other
patients that some of them also have these medication issues. I’m due a call
soon from my Patient Advisor at Oasis. I’ll mention it to him. As we drove home
from the Austin airport after the convention, I was encouraged by the trip
& considered having folks out here for a big Halloween, Samhain, drum circle
type of celebration; but I soon realized that I was possibly over-extending!
We’d do better to consider doing a Yule gathering instead! I could still use
some pumping up!!! I’m not yet up to 100%... in fact, I’m kind of a slug!
A couple of warnings from our August Oasisof Hope trip hang with me. The first is from one of the primary physicians. He
was very succinct in his advice, like with the chemo, to not take anything if
it was counter-productive or counter-intuitive. That reaffirms the game plan that
they’re throwing everything possible at the cancer - not relying on any ONE
modality completely. Therefore, I’m not beating myself up over my mistake of
omitting some of my initial dosages during convention. It was actually quite a
fortunate error! I couldn’t have participated in everything if I was stuck in
the bathrooms! As it was, I was fully vested & functional! The second thing
that’s stuck in my head is a repeated warning from, not only that same
physician, but also patients who were returning for their assessments or
boosters vaccines. Each, independently, confirmed that - during this period
between hospital visits, I’ll feel worse before I feel better. Their advice was
geared toward thwarting discouragement, but I hear them clearly in my head as I
struggle with meds & chest congestion & even a general malaise &
even unsteadiness. It was explained to me that now that we’re blasting my
immune system again with medications & supplements, oral this time instead
of daily IV dosages, my immune system is once again called into action & is
working overtime. But that’s exactly what this period of recentering is all
about - resetting my immune system to a new “normal” - a “normal” that has the
strength to combat & defend itself against the growth of my cancer cells.
Cancer still exists within me, it always will - there IS no remission at this
Stage. This is a drastic lifestyle change in which I have to make my body
inhospitable to cancer. It’s quite a shock & it’s definitely a struggle.
But it’s also truly life or death.
What happens next??? In mid-November, I’ll
get another PET Scan & a full blood panel done here. The weekend after
Thanksgiving, we’ll return to Oasis of Hope with those tools. The new Scan will
be compared to the one done on August 1st. At that time, we’ll be able to
visually identify any stifling / stoppage of my cancer or any possible (gasp)
continued growth of it - despite the treatment. I feel fine, so I don’t expect
bad news... but I can’t be completely blind-sided in case it goes the other
way! If they say that I still need to eat better, I have some room to modify.
If they say I’m doing well, I know that I can fall of the wagon JUST a bit.
They may increase or decrease my meds; they’ll resume oral meds will &
continue blood cleaning, hyperthermia, massive IV dosing, & Immunotherapy
vaccines as was done during the initial 3 weeks of treatment, but this trip
will be only for one week. This upcoming visit to Oasis of Hope will be the
barometer - the “Evidence of Benefit” of my commitment to this treatment plan.
We leave here for Oasis just five weeks from today. Within that week,
we’ll know the answers.
Thanks for staying with me, my friends! Your
love & support are the backbone of my strength! I’ll return with the
“Evidence of Benefit” results in December!
- Gayle -
