“You will overcome difficult times” was neatly contained within the confines of the fortune cookie I ate a couple a days ago. Timely considering the fact it has officially been a year since I said, “farewell” to my stomach. For those who went to elementary school, there is no need to fight immaturity and tack, “…on the toilet” to the end of the statement because it is too true for me over the past year. The fact it came within the bowels of a fortune cookie is, well, too perfect. Looking back, I do not consider it a “year” since my total gastrectomy, to me, it has been 365 days. 365, 24-hour segments of my life – taking it one day at a time. Over the past 365 days I have discovered the best answer to the open ended question, “how are you?” is a specific answer, “I am ______ today.”

“I am good today.”

“I’m having intestinal problems today.”

“I am feeling nauseous today.”

“Feeling strong today.”

Today acknowledges being grateful and soaking in all that having a ‘good day’ has to offer. Today allows me to look past the challenges that currently face me without allowing my circumstances to dictate my entire outlook on life. Remembering yesterday reminds me regardless of what I face today, the sun will rise again and tomorrow will be a new day.

In the past 365 days I am learning that there is too much life left to live than to allow my circumstances to narrow my perspective. A couple weeks ago I received an encouraging note from someone who was recently diagnosed with CDH1 who stumbled upon my blog. Like me a year ago, I had no idea what a total gastrectomy would mean for my life, but I never thought I would be sitting here in the warm Southern California sun leading a group of high school students on a tour of Christian colleges (including my alma mater Azusa Pacific) enjoying an iced coffee in the exact courtyard where I made my decision for college ten years ago.  If you had asked me after my first couple of days in the hospital if I thought life would ever go back to “normal”, in my drugged out haze which narrowed my perspective, I would have said, “no way”.

Today, my memory is a blur because of how far I have come these past 12 months. The gap between day 365 and day 1 is only growing and with each day I am reminded of how I overcame difficulties yesterday.DSC_0906 While looking back on pictures from my time in the hospital does not conduce feelings of nostalgia, it serves as a reminder that “this too, shall pass.”

Day 1 was a very long day, but today it is a memory. My first memory after surgery was waking up in an elevator feeling like I was on fire. I found out later the epidural they gave me before surgery had kinked in my spine when they put it in so I was not getting any pain medication. I should have known something would go wrong with a young anesthesiologist whose hands were literally shaking as he put his hands on my spine. My only thought as he was putting the needle into the tiny space between my spinal cord was, “good golly, I’m your maiden voyage…”, but we digress. The first voice I heard was Kate’s, “They are all done. You’re doing well. The scar is bigger than we thought.” Her words were filled with emotion. It came from a loving wife waiting for her 29-year-old spouse to come out of a surgery missing a vital organ like a stomach. I could not see her clearly, but I could feel her with me. Even drugged up I could tell she was exhausted. We had arrived before the sun came up, it was now mid-afternoon, and from that moment each subsequent second would lead to TG +1 minute, +1 hour, +1 day, +1 month and now I’m happy to be able to calculate that day using +1 year. DSC_0885

Everything changed overnight, not just my physical body, but even the character of our marriage. “In sickness and in health, for better or for worse”, would cease to exist as words exchanged between two lovers and would become a defining characteristic of our marriage. Over the next 365 days those vows would continue to be forged, but on the other side, we started to notice our philosophy of marriage taking on new life. We used to believe our marriage was about taking turns carrying each other – being strong while the other is weak – which is true, but this year, I think we learned what happens when both of us are frayed. Over the course of the last 12 months we have learned that we do not carry each other as much as God carries both of us. There is a huge difference. We used to say to each other, “I need to be strong for the both of us” and this year we’ve learned to say, “God is strong enough for the both of us.” While exhausting, over the past 365 days, I believe we found a strength in acknowledging a source deeper than each other and it has enriched our faith and our marriage. While this year would not be a year I would want to repeat, it brought us to a profound place of faith, trust, love and commitment finding freedom in not expecting the other to muster up the mettle to carry both of us, but rooting our hope in One who gives strength to the weary.

A year ago I looked down at the Grand Canyon along the length of my abdomen convinced it was not going to fade. The fresh wound paired with heparin had turned my fresh wound all shades of black and blue. I had abandoned all hope I would ever get used to it. 365 days and 1 additional surgery later, the scar is healing and I am starting to embrace it as my new body.

A few weeks ago I took Evangeline to the beach. When I took off my shirt my daughter saw my scar and said, “Daddy, what’s that?”

IMG_0855I traced the line that stretched from my diaphragm to my waist line with my finger and said, “that’s daddy’s scar.”

With a developing sense of empathy and compassion she responded, “Daddy’s scar? Ohhhh.” and then she hugged my leg and kissed me.

She will always remember Daddy with a scar. That moment, her Daddy’s scar, that day and every day after will serve as a reminder of why we continue to move forward taking one day at a time. The scar reminds me that how I choose to walk through this today matters, not just for me, but for her and our family.

“You will overcome difficult times.” This wisdom truly is fulfilled by stepping forward embracing all of the nuance, challenges and beauty of today. The past 365 days has been the most difficult year of my life, our marriage, for my family and friends, but it was a year I would not trade for anything. Kate and I want to thank you for all of your support, love and prayers through the past 365 days, here is to 365  and +1 more day.

Love,

Steve

While taking a few of our high school students on a tour of my Alma Mater, I was able to celebrate my total gastrectomy date with some amazing cappuccinos and a couple bites of the greatest donut on the face of this planet (literally, the greatest), the Tigertail from Donut man.

Call it college nostalgia if you want, but it really is incredible.
Toasting to the past, present and future Azusa Pacific Alumni
Too many coffee shops, too little time.
Enjoying a cappuccino is Silverlake is part of taking it all in 365 days later
Intelligentsia Coffee, too good.
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9 thoughts on “365+1 Days – Happy Gastrectoversary!

  1. Thank you so much for your posts. You are very brave and inspiring. I pray for continued good health. I had a total gastrectomy in July 2014 because of a CDH1 mutation and past history of lobular breast cancer. My recovery went well.
    I was rushed to the hospital last Wednesday because of excruciating abdominal pain and vomiting (bile). My surgery revealed that I had scar tissue twisted around my small instestines and an obstruction. I spent 6 days in the hospital and am now home. It’s discouraging to know that this may reoccur..I make a lot of scar tissue. I’d love to speak to you further. My email is nballa@comcast.net.

    1. I’ll get back to you today because I definitely went through the bile and abdominal pain episodes back in September. I also had the same “twisting” but mine was around the meckel’s diverticum. I’ll send you an email with my phone number if you want to talk as well.

  2. I have just is that discovered your blog. I am hoping that it is Godsent. My sister had a total gastrectomy on January 14, 2015. She is 66, 15 months younger than I. She lives in Colorado Springs and I am in St. Louis, MO. This is my third visit to help and support her. She is so miserable and we can’t seem to work out a routine to make her more comfortable. Reading your information makes me realize that I need to educate myself much more so that I can help her. The most urgent issue as I see it is that her oncologist wants her to begin a second round of chemo before 4/14. Her first 9 week round was before her surgery.She does not feel strong enough to tackle the chemo now. Thank you for your shred information. I will continue to read your past entries. God bless.

    1. Hi taffy, I’m so sorry to hear about the challenges your sister is facing with chemo. I’ll be praying for you and your sister! Let me know if you have any questions.

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