This morning, I was getting ready to leave for a routine mammogram
appointment in Porters Neck when the phone rang. It was the oncologist/GI surgeon, Dr Vohra,
calling because the tumor board had met and given their recommendation. She was still waiting to talk with my gastroenterologist
in NOVA, Dr Brown, to get his input, but the overwhelming
recommendation was for me to have gastrectomy once Matt returns from his “vacation”
in the Middle East. So, now, what
exactly is a gastrectomy? A gastrectomy
is the removal of either a portion or all of the stomach…in my case, the
recommendation is to remove the entire stomach.
(I did ask Dr Vohra just to make sure we were on the same page…and we
were.) It was very touching to have MY doctor
call and talk to me about this instead of having a nurse, an assistant, or a PA
relay the info from her. I was even more
touched by her thoughtfulness because in her opinion, it’d be better for my
whole family to have Matt back here when it happens…especially for the kids to
have dad here with them while mom was recovering from surgery…or at least that
he would be available to spend time with them if it was needed. There was 1 caveat to this whole deal…I need
to be scoped every THREE months until the surgery. As long as everything stays the same and
there are no unexpected surprises, the surgery will be delayed until sometime
after Matt’s return. I’m hoping to have
it done at the beginning of the summer, 2014.
All of this brings up a bunch
of questions like how are things going to go for me without a stomach? I know people
can live without one, but I'm already living without so much of my digestive
tract that I have no idea how this will impact everything else. AND since the
GJ-anastamosis site has problems because the stomach tissue isn’t meant to handle
digestive juices like the small bowel does.
This causes ulceration and inflammation and ultimately causes an
increase in the malignancy rate for the GJ-anastamosis. Well, I know from talking to Dr Vohra, that
there are even more problems associated with hooking up the small bowel
directly to the esophagus…just think of all the people who have reflux…this
would be like that be amplified. On top
of that, I still need to see the small bowel transplant surgeon at Duke. This
was just something my gastro wanted me to discuss "just in case", but
with the upcoming gastrectomy, having additional small intestines would be a
huge thing...especially since I have adenomas in my new duodenum AND in my
pouch and could eventually be facing ANOTHER Whipple procedure and ANOTHER
j-pouch surgery. UGH!! Isn't that "special"? I hadn't even
thought of those two, but Dr Vohra pointed out that it's possible for me to
have another Whipple if polyps grow in what is now my new duodenum. Can you
imagine the nightmare that would create? I do not want to even think about it…or
having a new j-pouch created. My Daddy asked if they can transplant some small
intestines, why can't they do it for a stomach or a colon...now THAT would be
VERY NICE!! Then we could keep a list of organs removed & replaced & be
added to yet another category of rare people in this world.
Obviously, this is all quite
overwhelming…not just about having the surgery, but I am also overwhelmed by the
God who created me and loves me and sent His Son to die for ME. He has me right where He wants me…right where
I need to be…in the right place…at just right time. That is no accident; it is not a
coincidence. This is divine providence
that is showing up in so many ways:
1. I have specialists who know what to do with me
and who are interested in what’s best for me.
Even though it is rare to have a patient with so many digestive organs
removed (in part or in whole), I am not a total anomaly to them. AND they have no problem admitting when they
need to look into something or get additional input. This is so much better than the guy I saw
down in Wilmington…looking back, he was clearly overwhelmed and had no idea
what to do with me.
2. I have a very good friend who had a gastric
sleeve done and has to follow a modified diet.
Now, she will be the 1st to admit that her diet and situation
are nothing in comparison to what I’m facing, but I disagree. I think that if you have any type of deviation
from the normal, then you can relate to someone else in a similar situation…maybe
not entirely, but you can find the common ground and then exaggerate it to get
to a better understanding of the extreme of another person’s situation. This is definitely the case with my
friend. I admire her so much because she’s
so good at planning her diet. When she’s
home, she sets the timer to go off every hour and alternates between eating
something small and drinking to give her body what she needs. When she goes out, her purse is packed with
snacks like grapes, almonds, protein bars, etc.
I cannot even fathom being that organized but know that I will have to
be.
3. One of my neighbors and a very good friend is a
chef…well, she says she was a chef before she became a full-time mom, but
really, she’s a chef. On top of that,
she has a child with Prader-Willi Syndrome, a very rare but complicated genetic
disorder. Food is like a drug to her
child who gets the same euphoric feeling that drug users do. The brain always signals that it’s ALWAYS
hungry even if the child just finished eating.
On top of that, her child’s body uses every single calorie consumed. Since NOTHING goes unused, my friend makes nutrient
dense foods to keep her child’s body as healthy as it can be and to control the
tendency of PWS patients to become obese (think about it…it the brain is always
sending signal that it’s starving AND it keeps every calorie consumed). Anyway, this dear, sweet friend offered to
help with my transition to eating with my stomach-less plumbing once the time
comes. She will take care of E-V-E-R-Y-T-H-I-N-G…from
talking to a nutritionist (with me present), to planning meals (with me), to
shopping for the food, prepping, etc. I
just need to sit down with her to learn what I need to know so I can eventually
take over the responsibility for myself.
This is soooo amazing because she automatically took this on herself…she
volunteered to do this without any asking on my part. On top of that, I already KNOW how good she
is at this because #1, she is a chef, and #2, she does this for her child. She’ll take care of all the overwhelming
stuff while I’m trying to recuperate, and then, she’ll teach me to do it
myself. WHAT…A…BLESSING!
4. I’ve
gained some weight lately. Most of it is
from the naturally occurring changes in metabolism once a woman hits her
40s. I even joked about this a couple of
weeks ago…without knowing what was coming up. My diet hasn't really changed,
but I've definitely gained enough “uncomfortable” weight that I’d like do something
to tone things up (especially butt & thighs), but since I’m still dealing
with whiplash from the accident, I can’t do much in the area of exercise. Looking at my track record, it appears that
every time I gain weight, something happens where I will benefit from the
additional weight to have a larger buffer to keep me from dropping below 100
lbs. So as much as I don’t like this extra weight, I do think it's good because
it’s more weight to prevent me from going below 100.
Well, I
think that’s enough questions and information for anyone to digest right now…no
pun intended. I greatly covet your
prayers as I continue this journey of living with FAP.
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