A Nail in the Road

Jessica (pre-surgery)

Jessica (pre-surgery)

As I sit and listen to a group of mothers discuss their high school children comparing grades, class rank, community service hours and SAT scores, all set with goals of graduation, college plans and the perfect life afterwards, I laugh to myself cynically. The lesson I’ve learned these past 3 years was the most difficult one in my life thus far. It only takes one nail in the road to change life’s path.

You never know what tomorrow brings. You can hope, pray and plan for the future, but it just takes one unanticipated event to throw life off course and change forever.

Bob and Jessica

Bob and Jessica

In 2010, my sister-in-law died of stomach cancer at the age of 43. My husband Bob, his sister and my mother-in-law all tested positive for the CDH1 mutation. All three had total gastrectomies in March of 2012. All three were postoperatively diagnosed with stomach cancer. It was only when my daughter, Jessica, then only 19, tested positive in June of 2012 that I learned the hard lesson of life’s path changing forever.

Jessica graduated high school in the top of her class, editor-in-chief of the yearbook, scholar athlete, and earned numerous academic awards. We were so proud when she entered Virginia Tech in the fall of 2010. After testing positive for the CDH1 mutation, Jessica showed signs of anxiety and depression but cautiously returned to school in August with the understanding that she would have her first routine endoscopy when she returned home for winter break in December. After a month into school, 10 hours away, listening to her fall apart day by day, we agonized and ultimately decided to withdraw her from college and take her home. She could not function, worrying that she had cancer cells engulfing her stomach, as she put it. To alleviate some of her anxiety, I made an appointment to have her endoscopy the following week.  It was two days later that we received the heartbreaking call…she had stomach cancer.

We saw the surgeon on Tuesday and her surgery was set for the following Monday. Mother Nature was obviously not on the same calendar because we were hit with hurricane Sandy. The surgery was rescheduled for the following week, November 8, 2012.

The night before Jessica’s surgery was an unexpected November snowstorm. As we rode into Manhattan, cars were littered on the Long Island Expressway, stuck in snow drifts. The anxiety was palpable. Needless to say, no one had much rest that night. When we reported to the hospital the next morning, the only coping skill we had left was humor. We made ridiculous stomach jokes and even videotaped Jessica as she was given valium and wheeled into the operating room.

The surgery was happily uneventful and her recovery was quick. We heard the wonderful phrase “clean margins”! Jessica did have 13 spots of cancer in her stomach, but now she was cancer free…a survivor! I remember thinking now that this was over, we can get back to “normal”. I knew there were some hurdles to jump in the future, but I just wanted my old boring life back. It never occurred to me that things would never be the same.

This past year we have experienced the highest of highs and the lowest of lows. A month after her gastrectomy, Jessica was rushed into emergency surgery at 3am to repair an internal hernia, and then was admitted to the hospital for a week because her intestines were jiggling around (literally, the medical definition we received) due to her weight loss, causing pain and nausea.

In the spring of this year, months after the surgery, after the unimaginable outpouring of love, gifts, flowers, parties, fundraisers and celebrations, life just went on…for everyone but Jessica. It was as if her world had stopped. The beloved college she went to no longer felt like home, her friends were living their lives contacting her less often, and Jessica was at home, alone and isolated.

She fell into a deep depression. That was our darkest time.

Jessica (post surgery)

Jessica (post surgery)

Thankfully, we quickly learned that a catalyst to her depression was caused by her anti-depressants not being absorbed due to her lack of stomach. Her medicine was changed and things quickly improved. I can say now that she is happy! And saying that gives me tremendous joy. She has taken steps to move forward; however her path is not the same as a year ago. Her goals are different, her friends are different, where she will attend college has changed, and even her appearance is different. None of this is a bad thing, just different.

I would be lying if I said that I have not grieved the loss of the “pre-gastrectomy” Jessica. Her life was weaved with mine so when she lost that part of herself, I lost it too. The Jessica today is a radiant, skinny, stunning, bleached blond beauty, who has endured with grace and bravery, more than most people should have to in their lifetime. I couldn’t be more in love with her or prouder for the woman she has become!

About Jane MacKenzie

Jane currently serves on the Board of Directors for No Stomach For Cancer. Her husband, Bob, and daughter, Jessica, have been diagnosed with the CDH1 gene mutation as well as her 2 sisters-in-law and mother-in-law. She has a 16 year old son, Matthew, who is yet to undergo genetic testing. Advocating and bringing awareness to stomach cancer is a passion developed from the difficult times her family has endured.

5 Responses to A Nail in the Road

  1. laurenfaye says:

    My mom found out that she had CDH1 less than a year ago and she has already had her stomach removed. They found various spots of cancer and a tumor in her stomach. When I went home to get tested just a few months ago over the summer I was told that I also have the mutation. I am only 21 years old, and I returned to college thinking I could just go back to classes and forget about the news. I am currently in school struggling to focus since I received the news, just like Jessica. I loved this story because I rarely see people around my age undergo the procedure so young. I plan to have my stomach removed before I am 25. I live near Baltimore Maryland but I attend school in Mississippi. I completely understand why Jessica went home, this is a hard time for any family to deal with apart. Although I mentally feel weak, I have been selling the ” Kia Kaha” bracelets to my sorority sisters. And I plan to take the bracelet sales to other greek chapters on the campus. I also plan to start selling the T-shirts in order to raise awareness. This story helped me so much, it was just this morning I called my mom and told her I couldn’t do this anymore. But she always reminds me to stay strong hearted.

  2. lilautumn707 says:

    My husband died at the age of 30…this is the reality for my daughter’s who at present are only 5 and 6. Thank you for sharing this story. As I listen to my friends talk about future plans I already have to think of mine minus my husband and then always live with this in the back of my mind. Our lives will never be the same and as your daughter learned 18 can bring about something so much more than college. Thanks again for sharing this…hope she continues to grow and move forward stomach and cancer free.

    • Jane MacKenzie says:

      I am so sorry for your loss. I pray for your family.
      You have found a great place to talk to and learn from others who have similar stories. Use NSFC as a tool to help your family. It’s where I started. We also have a great Facebook page!!!!
      Thank you for understanding my story.

  3. Cpeebles says:

    My mother passed away at age 44 with stomach cancer, Linitis Plastica. I have wondered if there is any kind of testing that I could have done to see if I could eventually have this awful disease. How would I get the testing you are talking about in your article ?

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