We realized it had been a while since we posted an update on our
post-op progress. In all honesty, we’ve
been so busy living and enjoying life that the past few months have flown by. We
each have battled some hiccups and bad days along the way, but for the most
part life is normal, we just eat a little bit different than most people.
We are 8 months post total gastrectomy, which is so crazy. January actually
marks a year since this process officially began. I met with the
geneticist for the first time at the end of January 2016. Who knew it would
lead to this wild ride?!
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| Merry Christmas from the Bahamas! |
So what have we been up to since our last post 4 months ago? We have
been chasing kids, working, spending time with family and friends, enjoying the
holidays. We even took a cruise to the Bahama’s a week before Christmas! The
trip was much needed and so much fun. The boys played with dolphins, hung out
at the Atlantis resort, ran all over the beach in Nassau, had breakfast with
the Cat in the Hat, and played their hearts out. Nicole and I were a little
worried about losing weight on the trip because we were so active, but we
actually ended up eating really well and it all balanced out. It was a great
way to close out a hard year.
Our boys health has kept us occupied recently too. My son Andy was
diagnosed with juvenile arthritis right before Christmas, so we’ve been going
through testing to try to narrow down his specific form and adjusting to weekly
Methotrexate injections. Nicole’s oldest son Caden broke his kneecap in a
wrestling match a week and a half ago. At first they thought his femur was also
broken and that surgery might be required, but luckily an MRI revealed the
damage was not as bad and for now he is just immobilized to hopefully heal the
kneecap. Nicole’s house has also been hit by strep and the stomach bug over the
past few days, both boys have been sick. So she’s donning masks and gloves,
spraying Lysol like crazy, and we are all praying she doesn’t come down with
either. Unfortunately we found out on New Year’s Day that people without a
stomach can still get the “stomach bug” since it actually occurs in the
intestines. I got sick that morning and ended up in the ER getting fluids that
night for dehydration. Way to ring in 2017! According to the GI these things
will be “exceptionally violent” in us as our intestines are more sensitive due
to the amount of work they do. I had a lot of abdominal pain for days
afterwards and found out it was actually from swelling that happens in the
intestines when you have GI bug. Since our intestines are more sensitive and we
no longer have any real fat padding in the abdomen, we will just be more aware
of the swelling that takes place. So we really need this bug to quickly leave
the McDonald house and Nicole’s immune system to fight it off.
Around the time of our last post point Nicole was having trouble with
her incision not closing. She underwent a surgery on September 28th
where the wound was cleaned out and a wound vac was placed. The wound vac was a
pretty painful experience for Nicole; however, it was effective. After a few
weeks with the vac on the wound started to close and it is now fully closed and
healed. Nicole has also had some issues with fat malabsorption and was dealing
with some sickness after eating foods with a higher fat content. She started
taking digestive enzymes with high fat meals to help her body absorb more
nutrients from the food and they have really helped her out. They aren’t 100%
and there are times she has issues with foods, but for the most part the
enzymes have made a big difference in her ability to absorb and digest food
properly.
Stricture (a narrowing at the area where the esophagus and small
intestine were joined) turned out to be an issue for us both. I had dilations
performed in August and September for what was called a “significant stricture.”
At my first dilation the area was pretty much closed off and I even had food
trapped in suture wire that was left from surgery. I had a really awful
reaction to the first dilation and they felt it was because the area went from
barely open to wide open and it was just a little bit aggressive for my system.
The second dilation went much better and I finally hit my stride eating and
maintaining my weight. I was supposed to have a third performed in October, but
I was doing so well at the time it was deemed we’d wait until a problem arose
instead of putting me through another procedure. I started having an increase
in swallowing difficulties in early December so we set-up another dilation for
January 13th. Turns out it was a lot worse than expected, the area
was almost completely closed again and a lot of scar tissue had to be cut away
before the balloon could even be place to dilate the area. I had some issues
for a few days after with nausea and reflux much like the first dilation, but
it passed pretty quickly this time. I will undergo another dilation on February
3rd to hopefully prevent the drastic closure that happened before.
Nicole also had some difficulty with food getting stuck and underwent a
dilation on December 28th and luckily that provided some relief for
her. Since strictures can be pretty persistent they are going to perform
another dilation on her tomorrow (January 25th) to hopefully stay on
top of the issue. One cool thing that both of our EGD’s revealed is that we are
both starting to form our own little stomach pouch under the anastomosis. How
cool is it that our bodies can adapt that way?!
Since we both had stage 1 hereditary diffuse gastric cancer at the time
of surgery, we are being monitored every 6 months for any sign of recurrence in
the abdominal area. We both have had CT’s and everything came back clean! We
will repeat scans again this summer. Lobular breast cancer is the next big
concern we have to face and a prophylactic double mastectomy is on the horizon
for both of us. We are being monitored every six months via mammogram or MRI
(we both just had clean mammograms over the past month). Nicole is leaning
towards having surgery in the summer of 2018. Steven and I want to evaluate my
health around the two year mark to see if another pregnancy via IVF with
genetic screening is possible. If so, we will pursue that route and I will have
the mastectomy after having another child. If another child not possible, I will go
ahead with the mastectomy sooner.
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| Our silly boys enjoying a train ride to the North Pole! |
Our fundraiser we held in November was very successful! We raised over
$1500 to send to Dr. Guilford’s research center in New Zealand. Around the time
we sent the donation we got a really cool update from his lab. They have
actually been able to grow miniature stomachs that will allow them field test
the medication in the lab. Our boys may be able to bypass this whole TG thing! One
of the ladies in our CDH1 group collected photos of everyone’s children and
took them to Dr. Guilford’s and they are now up in the lab to remind him of why
he does what he does. When we emailed him telling him we wanted to raise money
for his lab, his response to us was “we are confident your children will have
better options.” Talk about goosebumps! In the future we will be doing other
fundraisers for his research and we hope to have the same positive response
that we had to our first effort.
As we approach the one year mark it seems like our bodies are really
starting to adjust to this new life. They say it can take up to three years for
everything to fully settle into place, but most of the big stuff will resolve
in the first year. We probably won’t post a ton going forward, just because
there shouldn’t be a lot of action as far as our TG healing goes. But we will
posts as milestones approach, as news and developments about CDH1, TG, or
HDGC/lobular breast cancer occur, any fundraising efforts we undergo or if
anything crazy happens further into the recovery process. As another CDH1
friend and blogger Marne put it “the best thing about life after TG is LIFE.”
So we intend to live it to the fullest, to enjoy every moment with our
families, and to offer love and support to others who have to walk this path. We
can always be reached by commenting on this blog, reaching out to us on Facebook
or emailing us at Jessica.j.sasser913@gmail.com
or mc0826@hotmail.com.
