As a part of our Faces of Courage series, we are featuring a patient or caregiver story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.

Our Patient of the Month for October is William Wenzel. Here is his story:

GISTory

William Wenzel

William Wenzel, Texas, USA

My name is William, I was born and raised in North Wales, UK and currently live in Houston, TX. I’m a sysadmin by trade (systems administrator) and a massive nerd. I have played every game from “Super Mario” to “EvE” Online. I also enjoy football (soccer, not handegg, you Americans!)

I have always been a good weight, looked generally healthy, and never really had any medical issues. I had not even been to a doctor in over seven years. So, it was very surprising in May of 2020 when I suddenly had to go to the hospital for three blood transfusions due to internal bleeding.

At first, they thought it was an ulcer, then a GIST, then I finally received the news that by this point I just expected, which was, it’s worse than a normal GIST…’It’s a Genetic GIST’.

I was diagnosed in August 2020 with a SDHA-deficient GIST. Technically I was diagnosed with a normal GIST in May, however, it took a while for pathology results and then for them to stop re-testing the results in shock. (This is partially a joke, it was mostly was due to the fact that nobody thought it could be that.) Apparently, I’m only the 76th adult patient ever to be SDHA-deficient, or thereabouts…

It just started with a headache…

Coping with GIST

It was a lot to deal with at first. Have you ever taken a step where you think your foot will land but it doesn’t, and your stomach just drops through the floor? Hearing a doctor say “William. I have bad news…” after already having major surgery to remove part of my stomach does that to you.

I generally deal with things by compartmentalizing issues as a way to handle them piecemeal, instead of taking everything all at once. Think of my brain as a filing cabinet. Some things I throw really far into the back, just to handle the problem in my own way and on my own time instead of unleashing my emotions all over those I care about.

I tend to handle those by a mix of making self-deprecating jokes and making others laugh. This helps me. Unfortunately, my British sense of humor is generally not well received here in America. You blokes really need to work on your gallows humor! What else can you do in the face of death, but laugh?

This experience has definitely been something that has made me rethink a lot of my plans for my life. Especially considering I lost my job during the global pandemic right before cancer. Talk about kicking a man while he’s down! Thanks Cancer!

Advice for Fellow GIST Patients

If I were to have any advice for anyone after this experience it’s to live each day like it’s your last, because like me, you could very suddenly have your entire world upended around you.

Hobbies I Enjoy

I enjoy playing video games and soccer.

Motto

Truly just get out there and find enjoyment in life. Find things that make you smile and go do them, then do it again for good measure.

Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.

Criteria for Patient of the Month

  1. Patient must be a member of the LRG GIST Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has GIST Patient Registry Online
  5. Patient must agree to provide consent to share his/her story to our GIST community on our website and social media

Criteria for Caregiver of the Month

Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.

Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org

read more member stories