Here we are, four months post total gastrectomy. I know for my part I
am amazed at how much life has been returning to normal over the past month. It
feels like each week and each month things get better. Our families are
planning a Christmas cruise to the Bahamas and we are so looking forward to
sun, relaxation, and swimming with dolphins. Who would have thought we’d be
planning a cruise six months after having our stomachs removed?! I celebrated
my 32nd birthday over the weekend and I reflected on how much has
changed in the past year. Last September we’d never even heard of CDH1 and
within a year we discovered we carried this mutation and had prophylactic total
gastrectomies. This time next year we will be even further down the road and
adjusted to this stomachless life.
If you read our 3 month update then you know we were each experiencing
some complications. Nicole’s incision has been a big problem for her. It would
never fully close at the bottom and she’s had several procedures done in the
doctor’s office to try to stimulate the incision to heal, but nothing was
working. Nicole got our surgeon in Houston involved and after hearing her
symptoms and seeing pictures of the incision he felt the best course of action
would be for her to have another surgery to excise the wound and have a wound
vac placed. He felt that it would heal within a matter of weeks if this route
was pursued. Our surgeon here in Birmingham didn’t really want to perform
surgery or insert a wound vac because he thought it would be hard on her.
Naturally this has been a very frustrating situation for Nicole. Of course no
one wants to go through surgery, but it’s been over 18 weeks since surgery at
this point and not being totally healed is preventing her from doing things
that she needs or wants to do. One thing we’ve learned from this whole
experience is that we have to be our own advocates and push for our own care
sometimes. Nicole has stayed on top of the problem and been in constant contact
with both doctors’ offices. After another check-up, removal of debris, and CT
scan, our Birmingham doctor has finally decided to move forward with surgery.
She will undergo this procedure next Wednesday, September 28th and
the hope is that this will put her on the path to finally healing.
I had an esophageal dilation performed on August 19th to
repair a stricture. While that dilation did improve my ability to eat, it also
opened up the passage for bile to start coming up. For the first two weeks
after the dilation I had persistent nausea, a bad headache, and my mouth tasted
disgusting all the time. When we went in for my second esophageal dilation on
September 2nd it was determined that I was experiencing bad bile reflux.
I was placed on Xifaxan for 10 days to kill off any bacteria that may have been
in my gut and I was given a tip that has made all the difference for me, add
acidic foods and drinks to my diet. Bile is alkaline based and since I don’t
have a stomach to produce acid anymore I can become too alkaline. We may need
to buy stock in Tropicana based on how much Trop50 orange juice I have been
taking down recently! Since the second dilation my nausea has been much, much
better and I have been able to eat very well and have even gained a few ounces
back. I am meeting with a GI specialist in two weeks to hopefully try some meds
to help with the bile and then I will have one last esophageal dilation at the
end of October to make sure my pipe is staying open.
It’s no secret that our faith in God and belief in His perfect plan has
been what has sustained us through the early days of diagnosis and the surgery
and recovery. I was asked to tell my story at church a few weeks ago and wanted
to share that with anyone who may stumble across this blog: https://drive.google.com/file/d/0ByoYyITMwrkgekR4NTZkdktBdU0/view.
Psalms 139: 13-16 tells us “For You formed my inward parts; you knitted me
together in my mother’s womb. I praise You, for I am fearfully and wonderfully
made. Wonderful are Your works; my soul knows it very well. My frame was not
hidden from You, when I was being made in secret, intricately woven in the
depths of the earth. Your eyes say my unformed substance; in Your book were
written, every one of them, the days that were formed for me, when as yet there
was none of them.” Our CDH1 mutation was not a shock to God. He knew from the
beginning that this was part of us and He knew that if we would trust Him then
this could be used in a magnificent ways for His glory.
Now that our surgery is behind us we want to turn our attention to
raising awareness and funds for CDH1 and hereditary diffuse gastric cancer. Our
hope is to one day have an annual walk to raise money, but our recovery just
does not allow for that this year. But thanks to my fantastically talented
cousin-in-law Kristi Sasser we will be selling a specially designed t-shirt and
all the proceeds will go to Dr. Parry Guilford. Dr. Guilford is a genetic
researcher in New Zealand who discovered the link between the CDH1 mutation and
hereditary diffuse gastric cancer and lobular breast cancer. He is currently
working on a drug that would be taken every 2-4 years to kill off early cancer
cells. Here is a great article that explains the drug: http://www.stuff.co.nz/national/67457475/otago-researchers-identify-drugs-to-beat-hereditary-cancers.
In the next 10-15 years Caden, Liam, and Andy will be tested for this mutation.
Our hope is that if any of the boys carry this mutation they will have the
option of taking this drug instead of having to undergo a total gastrectomy
like we did. We will post the design and ordering information very shortly and
we hope you all will support this endeavor!
