Anxious Hope; Living in an Oxymoron
Christmas Eve 2018, when most were doing last minuteshopping, family gatherings, and Christmas Eve services, I was coming home fromUNC Chapel Hill Cancer Hospital, filled with anxious hope about what 2019 wouldbring…
And oh yeah, minus my stomach.
Anxious Hope may sound like an oxymoron(like bittersweet), so let me give the back story to better explain. In April of 2018 I received results of agenetic test done on the recommendation of my Gastroenterologist. You see, Ihad lost a grandmother and two sisters to stomach cancer, so we knew somethingwas going on in the family.
What I never expected, was to be includedin a rare group of 1 in 9 million (the stats at the time)that test positive for a gene mutation. This particular mutation gave me up to an 83% chance of gettingHereditary Diffuse Gastric Cancer (HDGC). It is a cancer so difficult to detect that by the time symptoms occur itis very often too late to successfully treat.
As my husband and I sat and listened to the surgicaloncologist give us the grim prospects of this mutation, my season of anxioushope began. We were really givenonly two options:
- A life of endoscopies with biopsies everyfew months with the hope that cancer would be detected if there or,
- the only for sure treatment: ProphylacticTotal Gastrectomy—removal of the entire stomach.
There were other issues this mutation brought with it,but this was the most urgent; not just for me, but also for any other familymember that would test positive.
I left that appointment feeling as if I carried theresponsibility of not only my health, but of my children’s, grandchildren’s,and the children of my sisters that had died from this disease. I knew that the steps that I took would be thefoundation others would base their decisions on.
With a 50/50 chance of a child inheriting the mutationif a parent has it, the odds of someone else in the family testing positive wasquite high.
So, after a day or two of prayerful contemplationI set about doing all the research I could at the time. With the help of my geneticist I sent aletter to all my immediate relatives relaying my test results and what that maymean for them. I also included all the information I had researched on thisrare gene mutation.
As I answered questions for my family the best Icould, some of them chose to get tested; others didn’t. Those that did, waited to see what my nextstep would be. I was referred to one ofthe best Gastroenterologist/Surgical Oncologist in the state. He was one of the few doctors in our areathat was familiar with this mutation. Heput me in a high-risk program and set about a series of test. He also spoke honestly about the difficultyin trying to do long term surveillance on the type of cancer this mutationcauses.
So, with such a high possibility of getting thisaggressive cancer, the difficultly of discovery before its late stage, andhaving seen the swiftness with which it took my sisters’ lives, I chose to havethe total gastrectomy. I knew withthis decision I would be making a life altering change for me and I would be apioneer in this procedure for others in my family, should it be an option.
On December 18, 2018 I went into surgery to have my entirestomach removed and to have my small intestine attached to my esophagus. Before “going under” I thanked my doctors andthe surgery team for giving me the opportunity to choose options for my healththat my sisters and grandmother never had.
I awoke from surgery to begin a new normal.As I was being discharged a week later, I was told that main goal for the nextfew months would be to learn how to eat, and how my new digestive system wouldwork. A year later I’m still learning and adapting.
My season of anxious hope gave way to hopeand confidence that I had made the right decision. My sons were tested, and learning theirresults were negative, gave me even more confidence that this mutation for mypersonal family would end with me. Several other extended family members tested also with negative results,for which I was truly grateful.
Then one day several months after mysurgery I got a call from my niece. “Aunt Gail”, she said with a shaky voice, “I got my test results in. Canwe talk”? She too had the same gene mutation.
I am so grateful that I could give herguidance and direction. She had the same surgery with the same medical team that I had. I amglad to say she is 5-months post-surgery (as I write) and doing well. Weshare inside jokes on being “seahorses”, an animal who also does not have astomach, as well as recipes for our new digestive systems. She now lives with the assurance that thecancer that took her Mom so un-expectantly is no longer a shadow over her. Herseason of anxious hope had given way to a life of hope and faith.
When our son Scott asked me to share myexperience for the Llama Lounge website, I wondered what I could possibly sayto benefit anyone in a leadership position? But then as I was reading over what I hadwritten for this article I realized I had unwittingly been placed in aleadership position for my family. And just maybe the things I learn could benefit someone else goingthrough an anxious hope season.
So, here are a few suggestions, not coming fromsomeone that holds a position of importance to a business, company orgovernment, but from just a Mom that maneuvered through an anxious season oflife.
- For theperson of faith: Pray. The Bible tells us to “be anxious fornothing”. Yet, God knows we willbe. That is why He says to bringyour cares to Him. He is thecalming force in my life.
- Seek wise andlearned council on the issues you are facing. Talk to the professionals.
- Research!Gain all the knowledge you can before deciding on something that will notonly effect you, but also those within your sphere of influence.
- Communicatewith others sharing your same experience. Being connected with others that have this rare mutation andsurgery procedure, has been immeasurable in helping me cope with healthissues and navigating the latest research.
- Believe inyourself! You are your bestadvocate, not only in issues of health, but also in life.
On December 18, 2018 I went into surgery not knowingwhat my future would hold. On December 18, 2019 I am alive, healthy and lookingforward to all that 2020 will bring. Andwhat better season than Christmas to look ahead with hope, faith,and optimism for the future!
And this is my wish for you all! Merry Christmas!
Gail Greene, Scott’s Mom
Editor’s Note: GailGreene resides in Rockingham, North Carolina. She has traveled the throughoutthe world and the US as military spouse. She is incredibly active in variouschurch ministries and volunteering in local schools working with children with specialneeds.