William Ramshaw

William Ramshaw resides in the expansive Pacific Northwest. He is a six-year survivor of pancreatic cancer and has written a memoir Gut Punched! Facing Pancreatic Cancer.

For me, facing pancreatic cancer proved to be the toughest fight of my life. Months of treatment, now followed by years of wondering if it will come roaring back, haunt me. Even today I have bleak memories of the surgery that almost killed me, followed by weeks of radiation and then more weeks of chemotherapy.

Only now can I even think about what I’ve been through. Only now have I been able to jot down some of the things I learned.

So, how do you get through cancer treatments?

With so much going on —endless doctor’s appointments, being poked and prodded, scan after scan, yet another blood test, new aches in places we didn’t know we had — it becomes even more necessary to communicate what is going on. No one can offer to help us if we don’t talk about what’s happening. Not just the incidentals that come with our treatments but how we’re feeling inside.

The trauma of treatments affects everyone in different ways. For me, I focused on the science of it to distract me. For instance, I found the linear accelerator radiation machine to be scary cool. In so many ways it looked like a spaceship, silvery and sleek. In the face of this darkness, others become moody or worse. We each face our treatments in our own way. But face them we must.

On more than one occasion, I’ve been tempted not to tell my doctor about a new ache or pain for fears this would lead to yet another round of testing, scans and bloodwork. And as a result, more days waiting for the results. All along, I would be dreading my cancer was back. But early in my treatments, my doctor made it very clear to me that I had to be truthful and honest no matter what. She let me know that if she was to be my doctor she needed to know “everything” that was going on. Even today I am thankful for her directness.

Some say, “You must lose your life to save it.” I would agree. So much of cancer is outside of our control. Trying to control it is like trying to hold water in our hands. At most, we can clutch a teaspoon or two. The rest leaks out. Thus, trying to control the course of our cancer is useless. It leads to frustration and if pushed hard enough to all kinds of other issues. The best any of us can do is to do what our doctors tell us and let those closest to us love on us.

We might not have years of medical education from a leading university, but we still have common sense. If our doctors tell us something that doesn’t make sense, question it. In 2016, a study by Drs. Martin Makary and Michael Daniel at Johns Hopkins University School of Medicine showed that the third leading cause of death in the U.S. was attributed to medical errors. Many doctors are overworked, especially now in the middle of this COVID-19 pandemic, and thus are more apt to make a mistake. Given this, a simple question may cause your doctor to reconsider the direction they want to take and take another look at your test results to make sure they didn’t miss something. Maybe they’ll ask a colleague to look at your case, or maybe they’ll order additional testing. Question things that don’t make sense.

Center is another word for focus. Samuel Johnson once said, “Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.” Cancer is one of those life events, that brings focus to us. It concentrates our mind. We now see the small things we looked past for years. Focus on getting through your treatments.

During my treatments, my mental state was rickety at best. I feared the surgery to remove my tumor, followed by radiation and chemo would not stop my pancreatic cancer or even slow it down. Many nights as I waited for the hydrocodone to rock me to sleep, I found prayer and meditation to be helpful. Simply realizing I am but a speck of dust in the universe calmed me. Rather than fixate on my dire situation, I consider others who may be facing far worse stuff than me. Rather than pity myself, I decided to be grateful for my small wins. A negative test. A nurse’s kindness. A dinner with good friends. The closeness with family.

Many clinics offer in-house counseling services. These counselors are trained in dealing with those of us facing cancer. So, if prayer and meditation aren’t cutting it for you, don’t be afraid to explore this option. If we are a stress-ball, we cannot participate in our care. This is a lose-lose situation. Maintain calm.

These are but five things I’ve learned along the way about dealing with my cancer and its sordid treatments. There are many more, but these will do for now.

Articles

A pancreatic cancer survivor offers other patients tips he has learned along his journey to help them get through their treatments.

The 5 C’s of Getting Through Cancer Treatments

When I received the news that I had pancreatic cancer, I thought it was over. I figured it was time to close things out, choose where I wanted to be buried and who would do my goodbye service.

But now, nearly seven years since my diagnosis — when few see two years and most don’t see five — fortunate doesn’t come close to describe how I feel. Beyond elated is better, but still not close. When I was diagnosed, I didn’t think I’d be there for any of my three daughters’ weddings. Two of them are now married. Will I get to see any of my grandkids? The jury is still out.

I only mention this to offer hope to those out there who just got their diagnosis. The first thing a lot of people do is rush out and update their will. And if their cancer hasn’t consumed them yet, they then charge off to see a travel agent to plan a trip to somewhere they always wanted to visit. Sadly, they forget to breathe and to live.

Often, the most important things that need to be done when receiving the cancer news are within a breath’s reach. An “I love you!” to the partner of many years who has hung in there with you. An “I’m so proud of you!” to a son or daughter who has struggled for years to earn your approval. Being kind to the person who delivers your mail rain or shine, or the harried clerk at the supermarket is a start. Just because I’m having a bad life doesn’t mean I should ruin everyone’s day around me.

No one, not even the so-called experts, can predict the course of anyone’s cancer. Many times, doctors are hopeful for one patient and doubtful for another, yet the one they had hopes for doesn’t make it while the one they had doubts about continues to plug along. There is still far too much unknown about this sneaky sickness that plunges out of a cloudless sky like a hawk onto an unsuspecting field mouse out scavenging for scraps itself.

So, what do you do when you’re feeling it's over?

When I found out I had pancreatic cancer and might not make it but a few months, I updated my will. And I probably dwelled on it more than I should have. But I can say now for sure it made no difference whatsoever in my outcome. My advice, plan but don’t dwell on it.

There is little benefit to taking the relaxed approach that you don’t have cancer. But, it’s also not good to take it to the extreme and think that you’re toast. Somewhere in between is the right place to be. And it is different for each of us. For me, I needed to look at it straight in the eyes, but this is too much for others. Stay clear.

In my case, I had a blocked bile duct and little time to do anything but get my pancreatic tumor cut out. However, from what I’ve observed and read, seasoned doctors have no issue with someone getting a second opinion. I suppose they almost expect it. After all, we’re the ones facing a tough road ahead and not them. If things aren’t clear, get a second opinion.

Ask about participating in a trial if it makes sense

In my case, figuring what I had to lose, I asked about trials, but my doctors felt it didn’t make sense. Looking back, they were right, but I didn’t know this at the time. Like everything in life, there are pros and cons. Although it can be uncomfortable to ask, it’s a discussion worth having with your doctor.

In the heat of my treatments, facing my umpteenth infection, I constantly had to go into the hospital to get a dump of IV antibiotics. While being hooked up to a pump, a grizzled male nurse named Mike told me, “Find an advocate.” He told me I needed to find someone who would champion my care. He was right. For me, it was Christina, a kindhearted physician assistant. At every turn, she made sure I was being cared for by the right people at the right time. You’ll sleep better knowing everything possible is being done to keep you alive. Do your best to find an advocate.

Facing any type of cancer can seem like this universe, and the zillions of others out there, are against you. It’s so easy to give up but again everyone’s cancer is different. No one’s outcome is set in cement. Do everything your doctor tells you. Don’t hide stuff from them thinking they don’t need to know or don’t care. Ask endless questions. No matter what, don’t give up.

Again, it’s not over until it’s over. Stay engaged. Do what you must, and don’t forget to breathe. And more importantly, don’t forget to live. It’s not over.

A pancreatic cancer survivor offers others advice on what to do when they feel like their journey is over. In short, don’t give up and it’s not over until it’s over.

When it Comes to Cancer, It’s Not Over Until It’s Over

No one wakes up one morning and says, “Hey, why don’t I get cancer today? And while I’m at it, learn all about managing it.” I certainly didn’t.

Like most people, other than having a couple of friends who got the C-word, I knew little about it. I also knew little about biology. In high school, I hated every wretched minute of it, especially dissecting those stinky frogs. I felt woozy at the mere sight of blood, especially my own. I seldom darkened my primary doctor’s door. In good health, why would I? Considering this, I was ill-prepared to take on leading a team of world-class medical specialists.

It all started on a spring day in 2013. With the snow beginning to fade back into the ground and the birds up in the air again playing tag, I had gone out to grab some Mexican food with a buddy. We both had the daily special, chicken enchiladas with rice and beans. Feeling queasy over the weekend, the next week I went to see my primary doctor.

A few days later I turned yellow. An emergency CT scan revealed I had a blocked bile duct. A trip to the ER resulted in being admitted to the hospital. Three days later I got the news, pancreatic cancer, a type of cancer considered a death sentence in that only five percent of those diagnosed live five years. My team of specialists began to gather.

The first member on my team was a surgical oncologist who performed a Whipple procedure to cut out my pancreatic tumor. Soon, he handpicked radiation and medical oncologists to join him. The radiation oncologist zapped me with 30 doses of radiation via a linear accelerator, which was a spaceship looking thing housed in its own bank vault-like building. The medical oncologist, aka chemo doc, gave me a chemical concoction meant to hold my cancer at bay, hopefully for good.

When no one could pinpoint the source of my cancer initially, a skilled gastroenterologist used a special probe to find the one-inch tumor that was next to my bile duct. This had not shown up in the multiple CT scans, MRIs or ultrasounds. A year later, this same doctor found a leak in my reconstructed bile duct. Leaking bile caused me to double over in pain sending me to the ER every few weeks.

A pulmonologist joined my care team after an abdominal infection spread from my pancreas to my spleen and into my left lung. And what would my care team be without an endocrinologist. I developed osteoporosis as a result of my radiation. While lifting a tire I heard, and felt, my back shuffle like a deck of cards. Three vertebrae had collapsed. Now, with the top of my pancreas gone, this same doctor treats me for diabetes.

When I started having mild heart arrhythmia (AFIB) episodes, a cardiologist joined my care team. Thus, over the span of two years, I went from never seeing a doctor to leading a team of medical specialists.

For a non-medical person like me, this created quite the quandary. With the growing complexity of my medical issues, I found myself seeing multiple specialists who seldom talked to each other. Instead, they expected me to tell the others what was going on. Being the bridge between them was not a good idea, but it became a necessity. Whether I liked it or not, or felt competent to do it, I found myself directing my care because no one else stepped up.

(Funny how electronic medical records were supposed to solve this. Only a few of my doctors can access the disparate medical record systems used at other clinics. Each practice has their own proprietary system so sharing information is tedious at best. This is further complicated by the fear of being cited for a Health Insurance Portability and Accountability Act (HIPAA) violation for spilling sensitive health records.)

So, what have I done to be the de facto team leader?

I have had to learn a lot about medicine, and in a hurry. How to pronounce multiple syllabic words replete with Latin roots. Fortunately, with Google, there is so much amazing medical information available. (Of course, you need to watch out for the junk science.) Although I need to look up every other word, for the most part, I can figure out the gist of what is being said. In my view, a smart patient is a good patient. My doctors have told me as much. Get smart.

When one of my care team specialists tells me something I don’t understand, which is often, I ask questions. And I ask a lot of them. This has helped me engage in my care. Don’t be afraid to ask questions until you get an answer you can understand.

Once you have the answers to your questions, act on them. One quick way to lose the confidence of your care team is not to do what they ask you to do. No one, let alone doctors, likes to give advice and have people ignore it. At best, this shows our doctor we don’t care. At worst, it shows disrespect. So, my advice is to act on their recommendations.

There are times I have found that I simply can’t act as a bridge between my doctors. I am not smart enough, but worse, I fear messing up their message. So, at times, I have had to force, nicely of course, Doctor A to talk to Doctor B and not expect me to try to translate their medical jargon. Like everyone, doctors are busy, but my life depends on them getting things right. If necessary, don’t be afraid to force your doctors to talk.

Like most everything, we get what we make happen, and not what we talk about. Until I see things happening, much like the proverbial dog gnawing on a bone, I stay on it.

Doctors, especially cancer specialists, have grueling jobs. All too often someone’s cancer goes sideways, and they don’t make it. Honestly, I don’t know how cancer specialists can go on day after day. So, maybe once a year, I will send a short thank-you note to one of them expressing my gratitude for the care they have provided. This has been a lifesaver when I’ve needed a little extra from them or their staff. Rather than being labeled as that whiny patient, I’ve been remembered as that thankful one. That’s why I suggest patients and survivors express gratitude to their care team.

My care team and I are focused on keeping me alive. And learning to lead them, especially with me having limited medical knowledge, has been essential to helping them keep me alive.

How I Learned to Lead My Cancer Care Team

For someone who is taller than 6 feet, I used to wear my weight well. My wardrobe consisted of 48-inch waist jeans from Costco and XXL fleece pullovers. None of my clothes screamed GQ Magazine, but it fit my personality which was comfortable.

I used to eat anything I wanted. I would consume combo pizzas, shredded beef enchiladas, cheesy quesadillas, meat lasagna … basically everything I shouldn't have been eating.

I loved apple fritters — you know, the ones with big chunks of apple that are deep-fried and covered in cinnamon sugar. Yummy, especially if you happened to get one straight out of the fryer. I didn’t shed the pounds, but instead I put them on.

Before bedtime, I would often eat a heaping bowl of vanilla ice cream. It was always the good stuff, and not that low-fat kind. I excused this by covering it with fresh strawberries, peaches, or sprinkles of blueberries. Where there is a will, there is a way to make it OK to eat bad stuff.

Back then I sort of knew being overweight put me at a higher risk for heart disease and diabetes, along with various cancers. But like everyone, I thought it couldn’t, and wouldn’t, happen to me. I had thought about it, but there's a chasm between thinking about something and doing something about it. That chasm consists of not getting off my butt.

Like most, I would push trying to lose weight off to next week, or next spring, or next summer for sure. I contemplated all the weight loss plans out there. I even joined Jenny Craig and lost a few pounds, but I was larger than I ever was in no time.

Over the years, I serially dated several gyms but never found one I got along with. Newsflash: Being a member of a gym is not the same as showing up. If you don't go and go a lot, what's the point? (Well, OK, we all get a pass thanks to this COVID-19 thing.)

All of this happened before I was hit with a diagnosis of pancreatic cancer; a type of cancer that so few survive, it's considered a death sentence.

Thanks to my pancreatic cancer, and a subsequent Whipple procedure to remove my tumor (where the top third of my pancreas was removed), I lost a hundred pounds, or a third of my weight. My diet plan was barbaric, and I would not recommend it.

Losing all that weight would normally be a godsend, especially in our look-at-me culture, but I had to trash much of my wardrobe and buy new clothes in much smaller sizes. In fact, I think the local thrift stores are still trying to clear my old stuff out.

Another result of my pancreatic cancer is that I can’t gain weight. With part of my pancreas missing, I don't produce enough digestive enzymes. To help me process food, I must take them. They cost about $2,000 a month which, thankfully, is covered by my insurance. But I feel for others whose insurance doesn't cover these things. What are they supposed to do, starve to death? Without these enzymes, food passes right through the body without nourishing the person.

One might say this is a blessing and it largely is, but it can be a little scary to eat full-sized meals and not gain a single pound. If I don't take enough enzymes, I lose more weight. And if I take too many, I feel bloated. It's an ongoing struggle. But considering the other option — not being here – I am happy to struggle.

I avoid going down the frozen food aisle at the local supermarket where the processed foods beckon me from behind their see-through doors. I don't need all the fat and added sugar. Sadly, no more frozen pizzas, or at least fewer of them. No more apple fritters (Well, OK, maybe one or two a year). I go for smaller bowls of ice cream, if at all. I've found sugar-free pudding to be a great stand-in for ice cream. And I go for a walk, or work in my yard, four or five times a week, if not more. My life really depends on these things.

There aren't many upsides to getting diagnosed with pancreatic cancer, except I can now wear (and look good in) skinny jeans.

There aren't many upsides to getting diagnosed with pancreatic cancer, except for the fact that I lost 100 pounds and now look good in skinny jeans.
 

Author | William Ramshaw

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