Yep, It’s
been over a month since I’ve returned home from my last round of immunotherapy
vaccines. I’ve received many private concerns & questions regarding my
status - & I really appreciate them, but I think I’ve just been waiting to
turn a corner before I’m able to report more optimistic news. That’s been a
long wait... TOO long. Like waiting “to get your ducks in a row” or “for your
ship to come in”. I’ve been honest up to THIS point - it’s time for me get
honest again & share the truth.
Here’s a quick review: after each previous
hospitalization, I’ve received full treatments consisting of IV’s, oral
supplements, oxygenation, hypertherapy, & ozone. During the February trip,
I ONLY received the LAK (lymphokine Activated Killer) & Dendritic vaccines
(Google those terms). While there, we were warned to expect a decline after
treatment & to not get discouraged. In a nutshell, the vaccines would be
pulling energies from other areas in order to attack the cancers directly.
After each prior visit, I had always had a couple of weeks of extreme
exhaustion, so I knew what to expect... or so I thought. THIS trip threw me for
loop! This streamlined treatment, with no additional modalities, was planned in
order to give my body a direct, one-two, punch - concentrating on just the
vaccines. Although I felt tired after the vaccines while in hospital & had
very little appetite, ten days after I returned home it hit me like a ton of
bricks & turned my gastric system upside down!
Due to the amazing amount of
kite crew helpers on hand, I attended the Zilker festival on the 4th of March,
but I was unable to do anything other than take photos! I was in pain! Pain...
that’s a new symptom. I haven’t actually HAD “pain” in the year since my
diagnosis! After a year of being “symptom-free”, now I’m suddenly actually
feeling the pain of my illness. Not so brave, anymore, am I? Upon returning
home on Monday after a tremendous Zilker Park festival, I hit the bed for a
good nap. I never expected to still BE in bed three & a half weeks later!
My liver hurt, my lower back hurt, my shoulderblades hurt, my entire tummy from
mid-ribs to thighs hurt, even my broken left shoulder from last May began
screaming at me! What??? I’m officially a whimp now! Had enough? Nope - let’s
add some belches from hell to the mix! I had to skip the Fest of Tails kite
event on March 17th because I was still both in pain & in bed. Once again -
just like with Zilker, I can’t send out enough appreciation to the kite crew
members who stepped in & made us all look great! Now I see what’s
happening... I’m measuring my improvement, or LACK of improvement, from kite
fest to kite fest! The organizers of the March 31st Jonestown event got
themselves caught up in red tape & we’ll be skipping that one; but our next
event coming up is Kite Fest Louisuane - my pride & joy! Certainly I’ll be
better by then...
The following Monday, the 19th, I began throwing up. Hmm... a
one-time thing or a trend? Nope - it happened again on Tuesday. With very
little in my tummy, it was pure bile... yeah, this is not a good sign when
you’re fighting liver cancer! Between juggling no appetite, diarrhea,
constipation from pain pills, drowning in night sweats, the inability to stand
for more than a minute without keeling over (which means no shower - yuck!),
& exhaustion, it’s been a twilight zone of misery since returning from
hospital! My wonderful local physician got me into her office immediately on
Tuesday, gave me an injection, & prescribed some anti-nausea meds. Okay,
let’s go home & try this again... For the past week, it’s been a real
see-saw of gastronomic nightmares! I think I’m finally reaching an even keel with
this balancing act. I still have to carefully eat in small enough meals to not
cause tummy trauma, but often enough to try to swallow my “neutraeuticals”
& chemo pills. So far, so good; but road trips make this balance a real
challenge & we’ve got a road trip coming up next week! I’ve also been
taking short strolls outside - just to the mailbox & back, & sitting in
the van for trips into town while Christian does errands. Small walks are okay,
& sitting is okay. I may be spending a lot of time sitting under our canopy
or sleeping in the van during Kite Fest Louisiane, but I’LL BE THERE!!! Plus,
we have a WONDERFUL dear friend who owns a fruit & veggie stand near the
kite field. She’ll be bringing me plenty of edible supplies!!! YAY!!!
So, when
will I be OVER this mountain? I just don’t know! When I begin to feel sorry for
myself & wonder if this is the beginning of the end, I remember the words
of the Oasis of Hope head physician: “Although you do have a particularly aggressive
form of cancer, I believe you’ll be able to survive it for years”. Then again,
like I said when IV chemo was my only option when I was channelled into
“conventional medicine”, if that time will be spent in pain & misery... I
may reconsider. But, for now, I’m going to grit my teeth & stay the course!
I’ll continue to improve, will have another PET Scan in the summer, &
return to the hospital later in the year. The PET Scan will be the final
determinant, but the hospital wants me back in August, but I now know that the
experience will include at least another full month of recovery in bed (as
now). No way I can go through THIS in August! I’d like to return to France for
the international Dieppe kite festival in September, & I WILL attend the
AKA Convention in October. I don’t have TIME to waste another month in bed
being a sick person! Time will tell...
- Gayle -
P.S. Photos from Kite Fest Louisiane
will follow in a couple of weeks!!!
