

I was diagnosed with stage 1 stomach cancer at the end of March in 2020. My mother died of colon cancer previously. Since my diagnosis, I’ve been treated with surgery and chemo and been cancer-free since November 2020.
My name is Kaisu, a retired RN from the US, and this is my experience with cancer.

3 years before diagnosis I had experienced mild difficulty swallowing. I had an endoscopy and they found intestinal metaplasia. I was advised to follow up with another scope in 2 years. Life happened, and it took me 3. I had a stomach ulcer at the time. The doctor biopsied under it and found cancer, specifically the gastric adenocarcinoma subtype.

When I heard the news, I was surprised but optimistic. I was extremely healthy with high levels of energy and was working 60-hour weeks in a profession I loved. I was flying high. I had enjoyed robust good health my whole life and looked and acted a decade younger than my age. I really couldn't comprehend how serious my diagnosis was. I never doubted that I would beat this illness and naively believed it would be challenging but totally doable.

Treatment-wise, I opted for a total gastrectomy (removal of the entire stomach), lymphadenectomy (removal of lymph nodes) and chemotherapy. I was an RN and I researched the heck out of this disease and its treatment. I joined support groups and learned all that I could. I went to the very best facility with the best doctors I could find. I followed their advice and recommendations, especially as it coincided with my own research. I knew the gold standard and they adhered to it and provided it to me.
Honestly, I'm glad I didn't know much before starting treatment. I learned that fear of a thing is much worse than the thing. When the thing is in front of you, you get through.
The medications that I took include:
- The infamous FLOT - fluorouracil, oxaliplatin, and docetaxel
- Steroids
- Anti-emetics
- Anti-diarrheals
- Anxiolytics
- Pain medications
- Laxatives
- Calcium channel blocker for esophageal spasms
- Neupogen
I had 4 rounds of FLOT, followed by laparoscopic gastrectomy and modified D2 lymphadenectomy, followed by another 4 rounds of FLOT. I had the full doses for the full regimen.
My treatment plan did not change. It was the best that science had to offer at the time. My tumor did not show any treatment effect, and I sometimes question if I was over-treated, especially with the after effects of chemo. However, at the time, I wanted to know I had done everything I could. If the cancer recurs, it is by definition, stage 4 metastatic disease. I did not want to second guess myself.
Every stage of treatment terrified me. Chemo is scary. The idea that you are losing a major organ terrified me. I had to reframe every aspect of treatment to deal with the fear and face it with dignity and courage. I did well. I am covered by insurance and I’ve been free of cancer since November 2020.

Because of the total gastrectomy, I struggled with weight fluctuations. Another side effect I had was neuropathy. This is lasting. Side effects like weight fluctuations, while present and unpleasant, were limited to active treatment. The stuff I am left with as a lasting legacy are much more impactful.
I have limited energy and strength. I cannot do what I did before. So, to cope, I improved my nutrition.

Post-treatment, my nutrition and diet has changed the most drastically. I must eat small meals frequently. I have to be very careful with carb intake as I am subject to severe dumping syndrome. I used to eat once a day, and was not much of a cook. Now, I have to cook my own meals to ensure adequate nutrition. I do very well, and actually enjoy cooking now but it is completely different from how I used to live.
I am looking for opportunities to enrich my life and enjoy it as much as I can. I was widowed a year after my treatment ended and I had to change states and homes. To accomplish this, I retired from my job. I am still absorbing all the changes. I'm not sure how I will emerge on the other side of all this, but I am hopeful.

Even after learning about my cancer diagnosis, I continued working. I loved my job. It was fulfilling and rewarding. My company told me I could come back and work whenever and in whatever capacity I wished. I was extremely fortunate.

A bed wedge for sleeping upright – that’s what I found most useful.

While I’ve had to go through some difficulties in terms of my professional life and self-esteem/self-image, challenges in my day-to-day life affected me the most. To get through them, I learned and relearned. It took persistence and determination. I’m grateful for the challenges as I am still alive to experience them. Thousands with this disease would trade places with me in a minute.
What I find to be most challenging as a cancer survivor is the fact that cancer is not a bump in the road. It is a fork. I will never be the person I was before I had cancer. I had to mourn that person before I could accept and begin to love the person I am now. It is a process, and sometimes it feels like one step forward and two steps back. Never ever give up. Life after cancer is beautiful. Every day is a gift and every day you can wake up and be grateful to be breathing.

I feared pain, disfigurement and dying. So, I reframed each experience. Chemo drugs were not a poison, they were a gift. They were the soldiers in my army and while each war would have casualties (my hair, my skin, my eyes), in the end, I would still be standing and there would be a lot left. My stomach was trying to kill me and it had to leave. I may die, but not today. Most importantly, I prayed. I believed that God was with me, and whatever happened was His will. I was loved and His amazing transformative power would take even this and fashion it for my good.

Today, I’m fearful and sad. I have been chastened. I have spent the last 4 years dealing with the after effects of chemotherapy and living life with a gastrectomy. I have had to have further surgery, as well as developed osteoporosis. I am weak and have little energy. I have aged decades in the 4 years since. I am extremely grateful to be alive, but the robust, courageous, bold woman I was is gone. In her place is a much diminished, frail and cautious woman.

This is a tough journey. It will ask a lot of you and those that love you. You will take blows, but you will also get many gifts. I will never be glad I got cancer, but I am grateful for the things I learned. I learned that I was loved, that my life had touched others and it mattered. I learned that life is a beautiful, wondrous gift. No matter what you are going through, you can get through this. All this is temporary. Stay strong.
Strengthen yourself as much as you can. If possible, gain weight. You are going to need as much extra as you can get to deal with the dramatic losses afterward. Remember that countless thousands of people have devoted their lives to come up with the treatments that can save your life. Remind yourself that all this is temporary, and someday, will be just a bad memory. Get all the help and support you can. You need people in your corner. You got this!
This patient's story is published and shared with their full consent. Any personal data that can be used to identify the patient has been omitted.
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