North Carolina Stories
Christina Leonard – Fayetteville Almost two years to the day after losing my brother to lung cancer and my husband’s brother to heart disease, my husband was diagnosed with stomach cancer (Linitis Plastica) at only 39 years old. No one hears of stomach cancer, so we looked it up. What we saw broke our hearts. The chances of Tony beating this were slim, and the chances of our kids getting it was high. No matter what, though, we were going to fight. Our now 18 (then 12) year old wrote our NC Senator Richard Burr asking him to support his daddy’s fight. I never realized how scared he was about getting cancer or having to have a total gastrectomy to prevent it until I read his letter. “When my family and I found out about my dad, we were all scared. I was scared, knowing that my dad is sick and had to have his whole stomach taken out. He was going to have chemotherapy and other stuff. I was scared that I too could lose my stomach at 21 years old.” The plea to the Senator was priceless, “Will you wear a blue ribbon in support of my dad and my family? Will you help get the word out? Will you help raise money for research and medicine to help people like my dad? Please, Mr. Senator, support my daddy’s fight and those like him. Please help get the word out about stomach cancer awareness.” Me, the caregiver, wife, mother, I’ll keep going, but my children, they shouldn't it must live in fear. My fight isn’t just for my husband. It’s for our children and their children’s children. I watched our mothers bury their sons. Never again should a mother bury a son/daughter. Nor should a young child have to bury their mothers or fathers. My blog on my family’s journey through stomach cancer is shared at http://deathtocancer.blogspot.com. My blog has reached over 75,000 hits. In March of 2017, we learned that Tony’s cancer returned after five years, and I was devastated and motivated at the same time. I feared being a young widow, and I feared my children were watching their then 50 lb. smaller daddy getting thinner and weaker by the day and what it is doing to them emotionally. WE MUST DO SOMETHING. I couldn’t sit back and watch my husband fade without a fight. I had the honor of speaking at the NIH NINR Caregiver summit and being interviewed by Cancer Today Magazine and Cure Magazine. I COULD NOT stay quiet about this disease any longer. Losing Debbie Zelman in December 2017 to this horrific disease and knowing she and Tony were battle buddies inspired me to do everything I could to make memories with my husband and children. Still, I wanted him to watch our babies grow up to be men. I wanted to grow old together. Having no cure and few treatment options have crushed my dreams. My beloved Tony gained his wings on Jan 22, 2019. I love Tony with everything I have, and he fought so hard, so now I must continue to do the same. My fears are now real. My husband died of stomach cancer at 46, leaving behind our five boys and me.
David Sumner – Durham For someone unlucky enough to get stomach cancer, I have been unbelievably lucky! I live in Durham, NC, with my wife Betsy, a physician who completed her residency at Duke and has a faculty appointment there. In January 2019, Betsy indicated that she was concerned about my eating and acid reflux symptoms and wanted me to get an endoscopy. I balked at that at first but finally relented and had it done in February of 2019. They found something but said it was likely a thickened gastric fold or other benign lesions. Betsy and I were scheduled to take a trip to Iceland in June as part of a running group. Since I have arthritis in my knee, I had scheduled a knee replacement so that I could hopefully participate in some of the events. Exactly two days before the knee replacement surgery, I received the news that the biopsy showed that I had stomach cancer, so of course, I canceled the knee surgery. A follow-up endoscopy with ultrasound and a CT scan suggested that cancer had not spread through the stomach lining. And the tumor was only about a half-inch in size! But little things mean a lot, and despite the small size of the tumor, its location near the esophagus indicated that I required a total gastrectomy. Fortunately, thanks to the early detection, there was no need for chemotherapy or radiation, and so things moved quickly for me; I went straight to surgery. I was lucky to live within a few miles of Duke, one of the best hospitals in the country, and have my surgeon be one of the best for a gastrectomy. He is chief of surgical oncology at Duke and spent time at Memorial Sloan Kettering Cancer Center before coming to Duke. The surgery went as well as I could have imagined, and despite some intense pain afterward, I was feeling reasonably OK by the following day. The hospital stay was not my happiest time ever, but it wasn't all that terrible either. I had already psyched myself up to walk right after the knee surgery, so that carried over, and I was up and walking (with the help of a walker) two days after surgery and walking quite a lot the following day. I was released five days after the surgery. I did everything they told me to do, including breathing a lot into the spirometer. My wife and I had a contest to see who could do the best at that – it was competitive, but she won. The one thing I could not do was eat the food in the portions that they provided. I know now that there is no way I could have done that then. But I did feel discouraged that I was unable to eat what I thought I was supposed to be able to eat. After the surgery, the 'autopsy' on my stomach showed that no lymph nodes had been affected, so there was no need for chemotherapy or radiation after the fact. I liked that my oncologist seemed so happy to tell us that news. My surgeon told me that soon I would be able to eat as I did before (I was skeptical) and that it was OK to travel to Iceland. After just two months post-TG, my wife and I took our trip to Iceland with no significant issues, although I did not eat very much. It was a fantastic trip, and I did everything that did not involve running. For the first few months, eating was not pleasant, but I was surprised at how much I could handle. I did not enjoy eating, however. And I was losing weight. But I tried to eat as much as I could, made everything as high calorie as possible, and experimented with various foods. And within about six weeks post-TG, I was able to swim 1000 yds almost every weekday, just as I did before surgery. And long story short, now ten months past my TG, I am eating everything that I did before, in about the same quantities as before, and most importantly, I am enjoying it! I lost a lot of weight (down to 135 lbs. from 175 lbs.), but I've maintained my current weight for the last six months. I hope to gain some weight back over time. While I would never have chosen to be without my stomach, I honestly don't miss it all that much. I now feel like my life is pretty much what it was before the surgery, although with a few new intestinal issues to adjust to. I realize now how lucky I have been, and I appreciate more than ever how incredible it was to be so close to a major medical center and to have such a great surgeon and oncologist. I've had strong continuous support from my wife, and my sister Carol came to help during the first few days after the TG. I appreciate more than most how important it is to have early detection for stomach cancer and how crucial it is to have appropriate medical care before, during, and after the surgery. Much more research is needed to find treatments for this condition. Consequently, I would like to do what I can to foster awareness of this condition and promote improved diagnostic techniques since, as my case clearly shows, early detection makes a huge difference. And I would also like to advocate for more medical research both in seeking a cure and increasing the quality of care. I benefited from both of these. And I would like to help make it possible for others unlucky enough to have stomach cancer to have a chance to be lucky too.