Tobiko
In May of 2009, a cancerous tumor was found in my stomach during an upper endoscopy to find the source of blood in my stool. The gastroenterologist tattoed the spot for future reference. I was referred to specialists at OHSU in Portland who recommended removing 75% of my stomach as well as the surrounding lymph nodes to make sure that they'd gotten any other cancerous cells, while leaving me with some effective stomach. When they performed the surgery two years ago today, June 17th, 2009, the tattoo had spread all over the place, so they removed the lower 80% and lymph nodes. After complete biopsies, no other cancerous cells were found.
One month later, I was sent back up to OHSU for another 10 days with fluid retention in my chest cavity, failing kidneys, collapsed lung, malnutrition, dehydration, a blood clot to the liver....and because of the oxycodon I was taking, I really didn't care and was just enjoying the nice hallucinations. I was finally released with home health and TPN and anti-coagulation self-injections for 3 1/2 months.
From then on, I'd go through phases of feeling well and getting activity, to days of dry heaves every 20 minutes and napping all the time. My abdomen started swelling alarmingly, and when I called my PCP, she sent me to urgent care for a chest x-ray. They did that and sent me to the ER, who sent me to ICU with liver failure. I was in the local hospital for a week and gained 60 lbs in fluid retention from the waist down. The only shoes I could wear were very large rubber gardening slippers.
My PCP, an FNP at a clinic close to home basically told me to give up, sign an advanced directive and try to stay comfortable for my remaining days. That really ticked me off.
My sister, out of the blue, said that if I found a Chinese Acupuncturist from China that she'd pay for it. She tends to be very conservative, but had used a Chinese Acupuncturist with success for infertility. I found one that comes in to town once a week and had successfully treated liver failure and had written a book on bladder and kidney issues. At about the same time, my gastroenterologist prescribed massive doses of diuretics and potassium and told me to lose 5 lbs a week. I was already down to 126 from being sick. I hadn't been hungry since my surgery, and with all of the dry heaves, had no appetite. Being an over-acheiver, I lost 12.5 lbs in 4 days, before I cut back on the diuretics. The acupuncture and the herbal brew she mixed up for me gave me the energy to survive all of the excess meds and the side effects - constant diarrhea.
The acupuncturist declared me cured of liver failure, prescribed a month's worth of herbs, and to give her a call if I start to swell again. Blood tests by the gastroenterologist confirmed that liver enzymes are normal.
I still don't get hungry, but I do crave things, and having been a "foodie" for years, I love to cook, even though I now live alone. I take digestive enzymes with probiotics (recommended by accupuncturist), and depending on how the day's going or what I think might be served with the meal, I take an immodium (recommended by the gastroenterologist). It's still hit and miss as to what gives me diarrhea and how soon after eating. Digestion is sometimes exhausting. I had been down to 102.4 lbs, but after a weekend away with the folks and eating restaurant food, I'm still trying to get rid of the excess sodium. Overall, though, I've put on 10 lbs in the last month or so, so I'm not feeling quite as emaciated.
People don't recognize me, and the thought of wearing a swimsuit next month for vacation is just a nightmare with scrawny limbs and saggy skin. I am getting more stamina, volunteering at the public library computer lab twice a week at 2 hours a day. I discovered Truvia for cooking, and can enjoy home-cooked desserts. The later at night it is, the less sweets have an effect on me - most days, so I stock up on things I might crave. I still can't drink milk except for a bit in coffee, have anything with cream, or ice cream, leafy veggies and nuts are also out. I can, however, eat cheese until the cows come home....Ha! I have a huge spreadsheet with the grams of sugar per serving of just about anything that might come into the house. It doesn't matter if it's natural or not, to my digestive system, sugar is sugar.
It's been a frustrating two years, working things out by researching online, using non-traditional medicine, and keeping meticulous records of what works and what doesn't, and what changes and potentially why.
To celebrate my two years since surgery today, I participated in the survivors events at the local Relay for Life, where a friend is a team captain. The experience was amazing, even though I had to go home to digest after the meal provided for survivors. Luckily that was the very last event offered to us.
In all, I've been very fortunate. I occasionally doubt the decision to have the surgery after all the complications that I've had. But, at only 45, if I hadn't had it, I'd be freaking out at every stomach ache or digestive change that came along, thinking that the stomach cancer was taking over.
