Part 3: Getting answers and support

This is part 3 of my blog series. If you haven’t read the previous parts in the series, it is best to start with part one, Daddy’s dying.

Since the surgery had failed, maybe it was time to find a specialist. It turns out Tampa Florida has an awesome cancer center called Moffitt Cancer Center and that one of the top specialists in PNET cancer was on staff. Well dang. I wish we had figured that out before I let the surgeon cut me open. Especially when during our first visit he said, “I wish you had reached out to me before you had surgery”. That’s when we knew the enormity of the mistake I had made. Well, at least it wasn’t the Whipple.

This new doctor had relatively good news. As we knew, this was a slow-growing cancer and, though it could not be cured, it could be treated like a chronic disease. And there were a few tools in his toolkit for treatment. The first, was chemo treatment administrated through a combination of different chemo pills. I would take one Chemo pill twice a day for 14 days. On the 10th day, I would take the other as well. They gave me an anti-nausea pill which was critical to take around the clock. By day 14, I was completely wiped and found it very hard to get through the day. I was working full-time again and that was a struggle. The extreme fatigue would last for a week. Then I had a week off. And then back to the pills. This went on for a full year into 2014.

Something the doctors never really make clear before surgery are the complications you may have after surgery. Mine was a huge hernia along my abdominal incision that started growing a couple of months after surgery eventually becoming the size of a softball. It turns out there is a lot of pressure inside your abdomen and stuff wants to push out. Gross, I know. Your strong abdomen muscles and facia are able to hold it all in, unless they are cut, then all bets are off.

Now what?

Since the huge incision the surgeon made caused this, we thought we would try a different surgeon to repair it. But after he saw the “varices” on the CT scan, the small blood vessels created by my oxygen-deprived spleen to get oxygenated blood, he said he was not qualified for such a dangerous surgery due to the bleeding risk and that I needed a “tertiary care”, the highest level of specialty and equipment. Such as the surgeon who caused the issue in the first place.

But since I was doing chemo, I just procrastinated. We pushed off any hernia surgery into 2014.

When the longest year of my life ended, we had good news in 2014. An MRI showed that the chemo had helped. The tumors had shrunk to half their size on both my pancreas and liver. Finally, some good news! However, there were not many more tools left in the oncologist’s toolbox. We would do a scan every six months and go from there. The goal was ‘progression free survival’, as the doctor put it. We did not talk about my life expectancy.

But there was still that annoying hernia to deal with. We decided to go back to the original surgeon after all since we at least knew he as a tertiary surgeon. And under the knife I went again for another major abdominal surgery in May 2014. This time he would install a “mesh” that was supposed to help keep my guts inside me. Cool.

When I left the hospital, I was told again after surgery not to lift anything more than 5 lbs. Do you know how hard it is to stop yourself from lifting anything over 5 lbs.? A gallon of milk weighs more than that. One night my invalid father called me to help him urgently. He had sat on the edge of the bed and was slipping off and couldn’t get back up. He was very scared of falling. So, what did I do? I jumped on the bed and pulled him back up, without thinking. I think that was when my second hernia started growing, despite the mesh. Another softball on its way.

At that point, I gave up on fixing the hernia and wore a girdle-like device to keep everything in and moved on with my life.

Having a rare cancer can be difficult because there are few oncologists who know how to treat the cancer. There are also few people you can talk to who have gone through the rare cancer. Thankfully, these few can be found online in a site I highly recommend for any health issue: inspire.com. Here you can search for your condition and join an online support group. This is incredibly useful because you can learn from others who have gone through or are going through what you are going through. Most important, is you can ask questions and learn. For instance, I learned that there was a new kind of radiation treatment that wasn’t even available in the United States for my kind of cancer. People were flying to Europe to get these treatments. That kind of stuff is good to know because your Oncologist will likely not mention it if treatment isn’t available.

The lesson learned here is that sometimes you can learn more from other patients with the same condition than you can from your doctor.

After my chemo treatment the cancer seemed stable and I was hoping for, as the doctor put it, ‘progression free survival’, and that I was one of the lucky 24% to make it to the five-year mark in 2018. At least by then, our youngest son would be a junior in high school.

But progression-free was not to be.

Lessons Learned:

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1: Focus on finding out what cancer you have before thinking about cutting it out.

2: Do not let them rush you. Take your time and make good decisions.

3: Trust your instincts. Don’t be afraid to do something different than your doctor suggests.

4: Take time to find a specialist, especially if you have a rare condition.

5: Learn and get support from other patients going through what you are going through.

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Check out Part 4 in the series: Get busy living or get busy dying.

Disclaimer: I am not a physician nor any kind of healthcare worker. Nothing I say should be taken as medical advice. I will simply tell my story for my particular situation and hope you will get something out of it.