Originally written April 27, 2017 as I cleared the one year anniversary of my Whipple surgery to remove an insulinoma tumor. I am happy to report that I find myself, 4 years later, healthier than I have probably ever been. Physically, I carry a large scar from this surgery. My fasting glucose runs a bit high. Otherwise I have suffered no long term complications.

In the years since my surgery, I have met people from all over the world with the same rare tumor I have (though online groups). This has helped my healing. Although the physical and emotional traumas of this surgery are processed, I feel little emotion discussing them, I am glad to be able to share my knowledge for those facing this tumor/surgery.

It’s been a year since my surgery.

This has been one of the most difficult years of my life. It was the most physically difficult, by far. I’m no stranger to surgery. This was my 12th, including 2 open abdominal surgeries.

I had only two weeks to prepare myself. It was blessedly brief in that respect. However, I woke up in terror each day knowing the surgery had grown even closer through the night. Some days I did not know how I would be able to check myself in at the hospital. Getting out of the car, walking in with my suitcase, replacing my regular clothes with a hospital gown, getting in to the hospital bed, calmly holding my arm still while a nurse started an IV on me. These actions grew to ridiculous, impossible proportions in my mind. I had a recurring image of the surgeon bringing an axe down on my stomach while I was still conscious. I went in under a Xanax haze. I ate breakfast pizza from Casey’s (a very good choice for a last meal) and drank my last Diet Pepsi on the way over. I wore my Wonder Woman shirt and had my nails painted Wonder Woman red. I felt like anything but.

The tumor I had (insulinoma) is very rare. It only shows up once in one million people. The pancreas isn’t a large place, these tumors are very small. Not only did I develop this rare tumor, but it showed up in the worst possible spot, on the pancreatic duct in the head of the pancreas. A few millimeters would have made all the difference. Closer to the surface and I would have likely ended up with a laparoscopic surgery. The other end of the pancreas, it would have been open but only a small part of my pancreas would have needed to be removed.

My surgeon was, apparently, a genius. I was reminded of this by every nurse, doctor and intern that played a part. Looking back, I can see that my healing took a pretty straight trajectory in the physical sense. At a snails pace, but steady and with little complication. My surgeon was unmoved by my tears. A great surgeon can’t be. Not even a sip of water for 7 days. 14 days in the hospital. A plastic tube running down my nose and throat for a week. No epidural afterwards, he felt it best for the body to be confronted with what had happened. I had 7 feet of plastic tubing coiled in my abdomen – emerging through 3 incisions in my side which ended in drains that collected fluid, stitched into place for a month. There was no comfortable position. Everything above a shallow breath caused me pain.
It would be 4 months before I had a pain free day. It would be 6 months before I stopped taking a daily nap. It would be 9 months before I could handle any kind of physical activity. Just last week, for the first time, I was able to exercise for 30 minutes each day, a feat I had not been able to accomplish for over a year.

I cried myself to sleep. I gave up. I gave up so many times. I wonder how many tears are now held inside my pillow. How many pounds of pain and sorrow seeped into my mattress. How heavy had it become bearing my last troubled year of sleep. What would it look like if I cut it open – darkness, grey clouds, a cold rain, air filled with so much ash that it’s almost impossible to breath.

I became bitter. My humor took a sharp edge. My thoughts became mean. It became exhausting to be in public because it was so difficult to pretend that I was being as positive as those I would speak to. I was irritated by life. Angry. I felt entitled to restitution. I wanted my life and health returned immediately. I didn’t want to do any more of this. I thought it fair that I should wake up and have all that I lost when I became ill returned to me. Upon my last emotional payment, when I had suffered enough. This did not happen, of course. It never does. Like my surgeon, life was unmoved by my tears.

I sought therapy. I cried a lot. I filled pages and pages of my journal with despairing words. I eventually stopped feeling so angry. I accepted that I was not going to be transported back in time, before I got sick. I would not be catching up with my former healthy self and resume the life I left. Life had gone on for everyone. I had been changed. From my hospital room I could look down below at the cars driving by, people going wherever they were going on a lovely spring day. I had memories of being a young child, protesting my bedtime because it was still light outside and I could see other kids playing. Why are those people outside while I have to be here? It wasn’t fair. It had happened though. The days following my surgery I was in ICU. I was so thirsty; thirstier than I had ever been in my life. My mouth was stuck together, I couldn’t even talk. No water for 7 days. My nurse said ok, you go ahead and cry all you need to and when you’re done we’re going to deal with it. That’s probably a better summary of this whole situation than anything I could come up with on my own.

It wasn’t all bad. When my appetite returned in October food tasted better than I ever remember it tasting. Music took a clearer, truer tone. I started to feel physically better. I felt sincerity return to my smile. I felt the first breeze of joy through my soul. I laughed. Each spring I watch the daffodils in my yard break through the frozen ground. Sometimes it seems impossibly early. Like, daffodils, are you sure about this? It’s 32 degrees. I felt the same thing happen to me this year. I felt that I was going to make it. Like my body was no longer fighting me to be well. Felt like we could maybe work together again. Felt like we were headed in the same direction. My body has become younger in ways. I have lost 30 pounds since my surgery. I look healthier. There is color beneath my skin. My blood sugar was initially so high that diabetes was a fear, but through a strict diet, I was able to bring my A1C down almost a full point. Low enough that my endocrinologist recently released me from her care.

I wish I had some wise words to share with you, some message, something the past year has taught me that I could wrap into a philosophical statement. I’ve got nothing like that. I’m still here, though. A little deeper, a little darker, a little softer, a little kinder. It’s amazing what we can survive. It’s amazing that our bodies keep going. Our hearts keep beating, our skin knits itself back together, there used to be stomach here and now there is not. The body finds a new way. Adapt and survive. Live. It’s the motto of our species.