On my stomach, in a big v- or chevron shape, is a ten-inch scar. It stretches from one of my stomach to the other, and even now, eight years later, it is sensitive to some things that are unexpected – perhaps a sudden gust of wind blowing the cotton of my shirt against it, perhaps numbness when I touch a certain area of it. It is a daily reminder of how lucky I am in so many ways, how fortunate I am to have it. So many people don’t even get the chance to have one of these, that I feel a responsibility in some ways to make the most of things.
In late 2002, I had the worst pain in my abdomen. It felt like a combination of being hit in the stomach and being car-sick. The only way I could alleviate it was to bend over with my chest to knees, and so obviously, I had to do something. I ended up spending five days in hospital with acute pancreatitis, with most of that time spent on morphine and with no food. (You are not allowed to eat anything with pancreatitis in order to rest the digestive system.) However, I didn’t get hungry as (a) pancreatitis removes your appetite, and (b) I had an intravenous drip of the equivalent of Gatorade for your blood.
Just before Christmas arrived, I was discharged and went home, thinner than before and wondering what to do to prevent this in the future. It was my second bout of pancreatitis and the causes for triggering it were gradually becoming fewer – I had already had my gallbladder removed (one of the frequent causes), did not abuse alcohol, was very active, and hadn’t been bitten by a scorpion (a possible but not probable cause for the condition).
The next five months post-pancreatitis were spent traveling between one doctor visit and the next, from one scanning machine to another in various towns, being referred to the next for “more testing” as my results on the CT scan were very unusual and the docs wanted to make sure of their diagnosis. I ended up having a pre-cancerous tumor on my pancreas, a rare kind that normally only affects men who are over 65 years old and heavy smokers. (I am neither of these.) Such a tumor is too risky to leave alone, and so my only option was to have a Whipple operation, a huge surgical event which involves lots of cutting, removing and reattaching bits of your digestive system and requires a specialist to handle. Things are never the same afterwards, but at least having the surgery meant you lowered your chance of getting pancreatic cancer which is a certain death sentence at the moment.
The operation went well, but recovery was tough. One month in hospital in both Dallas and here, followed by problems with eating, and maintaining weight and energy. However, I had my family around me who were extremely supportive and patient while we worked out what my stomach could handle and how much and how often. It was a whole “new normal” for me and it took a few months for me to learn how to handle my new digestive system.
Eight years later, as I reflect back on that challenging time, I realize first that I am incredibly lucky to have had the tumor seen by a radiologist in the first place. Ninety-five percent of people with pancreatic cancer die in the first year, and most are ineligible for the surgery for various reasons. So not only was I incredibly fortunate to have a talented radiologist, but also I was very lucky to have it caught so early that I had options. Too many people have this taken away too many times just by sheer timing and ill luck.
It was a very hard journey – I lost a lot of weight, had five tubes sticking into my abdomen, and couldn’t work for a few months. However, such an experience does force you to re-evaluate the things in your life.
I was working at the time, so was fortunate to have good health insurance that covered most of my $200,000 medical bill in Dallas. I was fortunate in some ways that I was laid off when I returned to work post-surgery because it gave me time to heal and to fight with the insurance companies about payment. This time off from work also gave me energy and space to re-examine my own life and to decide how to make the most of my remaining time on earth. For the first five months of the year, I knew I had a pancreatic tumor, but not what kind it was or whether it was malignant. So for the first half of the year, I wasn’t absolutely clear whether I would be alive at Christmas. (The survival statistics of pancreatic cancer are gruesome.) And so with a possible limited life ahead of me, it does make you have to sit up and take notice of some things that could do with changing.
In the past, I had been the Queen of Procrastination, and if something could be put off for one more day, it was. When you are not sure whether you are going to be alive in six months’ time, you realize that this attitude is not helpful. I also came to believe that time is short and I need to respect that. How did I want to spend that time once I knew that I had given the gift of the rest of my life post-surgery? I tried to work on my patience with different people in my life; I worked on being grateful every day for the little things; I learned to appreciate food and being able to eat it most of the time. It is as a lot of people who have been through life-changing events report: it does force you to consider your mortality and your contribution to the world.
Once I was out of that tumor tunnel, I recognized how wonderful it was that my mother could come out from England and spend every day with me in the hospital which was a huge morale booster on the bad pain days. I recognized how lucky I was to have a husband who was willing to hold down the fort whilst I was away, and who was blessed with patience to deal with a continuously tired wife for the first few months. I realized how fortunate I was to have been given a severance deal from my job to keep my salary and my health insurance until November when I hoped to be more fully recovered and able to work. I was fortunate that my husband had a cousin who was a radiologist who asked to look at my scans, and she was the one to see the tumor when all other radiologists had said nothing.
It was a series of cascading steps that lead to each other one after the other. The cousin radiologist knew the Chief of Surgery at the Dallas hospital who was a nationally renowned expert at the Whipple; that the hospital and the surgeon were in my health insurance network; that my mum had just inherited a lot of money to allow her the freedom to travel and stay with me whilst I was sick; that there was the FMLA to prevent me losing my job (and its benefits) for a significant amount of time; that I lived in the US with the most up-to-date medical treatments available to me. When I think about it, it’s quite amazing in some ways how this worked out.
Eight years later, I still have the scar. I see it every time I look in the mirror, and it reminds me of so much, but the biggest reminder is that I am here, I am alive, and I must remember to appreciate that even on the crappy days. So many people with that diagnosis don’t make it through to the end of the tunnel; they die within weeks or months. I remember that and I try to make my days count in some way. Obviously, since I am human, some days don’t count for much, but I try to remember how lucky I am to be here and now and not bankrupt and dead.
I am very happy to have my chevron scar. It means I am alive.
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