Nobody thinks about Pancreatic Cancer when they meet someone new. The memory of the first time we met Sweet Lou is as clear as yesterday. There was no way to know then that he would be taken away so quickly. Like so many things in life what seemed like a negative situation turned into something positive. We met some of the best humans we have ever known when a landlord defrauded us. Lou was one of those people.
Determined this landlord situation was certainly a sign that the recent relocation to Colorado was doomed from the beginning caused much tension in my marriage. Desperation set in to move back to Georgia where the support of parents and siblings would be certain. Plus I was surprised my husband decided to share this personal information with people we had just met – that caught me off guard. But, when I stared into the friendly faces of our new neighbors that night I told the truth. Raising kids is hard without family around. Sweet Lou said, “We’ll be your family.”
As you may have guessed this story does not have an entirely happy ending. As I write this now Lou has been gone almost a year.
The Job of the Pancreas
The pancreas is a spongy, elongated pear-shaped gland organ. It is located in the abdomen and helps your body digest food and regulate insulin. The pancreas excretes digestive fluids into the intestines and works with the liver and gall bladder to help break down foods. The most important function is to regulate the insulin in your body. “Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys (Columbia University, 2019). Most people probably do not think much about the pancreas unless they are a fan of Patrick Swayze or Alex Trebek.
Pancreatic Cancer Statistics
- Pancreatic Cancer is the 3rd leading cause of cancer-related deaths in the United States
- More people die from Pancreatic Cancer than from Breast Cancer
- The average lifetime risk of Pancreatic Cancer in the US is 1 in 64
- The five-year survival rate for all forms of Pancreatic Cancer is just 7%
- The one-year survival rate for all forms of Pancreatic Cancer is 20%
- Death rates for all cancers have declined except for Pancreatic Cancer which has remained the same in the last decade.
- Every day in the United States 155 people will be diagnosed with Pancreatic Cancer. Statistics can make it easy to forget that each one of them represents a human being: a father, mother, son, sister, husband, or friend like Sweet Lou
Behind the Pancreatic Cancer Statistics
When it comes to cancers two questions are usually on everyone’s minds. What are the risk factors? And, how do I prevent it? There are certain risk factors for Pancreatic Cancer that you cannot control. Some are a possible genetic predisposition, exposure to certain chemicals at work, age, gender, race, diabetes and chronic pancreatitis. Some factors within our control are thought to contribute to an increased risk and include obesity and tobacco use. Others such as diet, a sedentary lifestyle, infection, or coffee and alcohol consumption are not as clearly connected.
Most advocacy groups will point out that a healthy lifestyle may reduce your risk of getting certain types of cancers. This point should not be mistaken to mean that any individual is responsible for their personal cancer diagnosis. At the end of the day we are all just trying to balance our lives between what is good and what is good for us. In Lou’s case he was not at a high risk and was in generally good health.
One of the most difficult aspects of Pancreatic Cancer is that there are few early warning signs. This is complicated by the rapid rate with which the cancer spreads. The symptoms are vague: pain in the abdomen or back, weight loss, jaundice, loss of appetite, nausea, changes in stool, pancreatitis or recent-onset diabetes.
Sending your husband to the doctor every time he has a stomach ache (as I have done the past year) is not very practical. Here is where it is important to know your body. Pay attention to what is normal personally. If any of the known risk factors or family history is a possibility it is better to err on the side of caution. The Mayo Clinic recommends a person “see your doctor if you experience unexplained weight loss or if you have persistent fatigue, abdominal pain, jaundice or other signs and symptoms that bother you.”
Diagnosis and Treatment
Imaging in the form of CT, MRI or PET scans are the first steps a doctor will probably take after a physical exam. There are endoscopic procedures if a biopsy or closer look is necessary. A blood test called CA-19-9 is available but is known to be fairly unreliable. Most doctors will record levels before and after treatment, none-the-less. Again, it is important to remember the success in beating Pancreatic Cancer depends in large part on early detection. So, get to the doctor if you suspect a problem.
Once Pancreatic Cancer is diagnosed the doctor will attach a stage level between I and IV to assign a seriousness of the disease. The lower the stage the better. The most effective procedure is thought to be the specialized surgery called the Whipple procedure. Other surgeries including the removal of the entire pancreas are sometimes done. Chemotherapy and radiation are other traditional methods of treating all cancers including Pancreatic Cancer. There are many clinic trials ongoing right now that have shown to increase a patient’s lifespan.
Pancreatic Cancer Palliative Care
Palliative Care is the next step. This is the stage a patient and their family reside in between ‘there is nothing more we can do’ and hospice, or end of life care. Palliative care encompasses a wide range of modalities designed to help a patient and their loved ones cope and be as comfortable as possible. They may also help a patient consider whether actively pursuing trials is a good idea. Alternative therapies like acupuncture may help with pain. Therapies like art and music help manage emotions. And, spiritual counseling can help many manage the complex emotions that accompany a terminal diagnosis.
Pancreatic Cancer Unspoken Survivors
The survivors of pancreatic cancer are most often those left behind when a loved one passes. When I reached out to Lou’s Lady here is what she offered:
“I guess I would say do your research, get second opinions or third. Utilize clinical trials as they really do prolong life. But weigh the pros and cons when it gets towards the end as sometimes keeping someone alive longer isn’t more important than spending quality time. Go on vacation or do things that are important to you and your family. See people and make memories when you can. But don’t be afraid of offending people by setting boundaries of what the patient and caregiver can manage. Enjoy the time you are given and say everything you need to say. That goes both ways. The time you are given goes by quickly.”
Pancreatic Cancer Means Saying Goodbye
For my part, I have to add that one of my greatest regrets is not getting back to Colorado in time. Our family did eventually make our way back to Georgia. Our daughter is a Chargie with POTS and life seems complicated for us sometimes. A combination of our difficulty accepting the truth and the complications of leaving behind a chronically ill teenager for a trip out of state had us wait until it was literally too late. By the time we landed in Colorado, Lou was actively dying.
It had been suggested to us maybe we wait until the funeral. Two trips was not feasible for us. Given the chance again, I still would have chosen to try to make it in time to see him alive. Still, getting on that plane to come home without seeing him was one of the saddest days of my life. I will always regret that we never got to tell him how much his friendship meant to our family. Within a few days we got the message he was gone. Because of the amazing man he was his legacy still lives on in innumerable ways. He will always missed.
About the Author
TJ Madden has been a regular volunteer with The Unchargeables community wearing many different hats. She is a Caregiver for a Chargie with Dysautonomia. You can find her on Instagram sharing her life as a reader, writer, teacher, baker, chicken soup maker, and fighter for all things healthier, stronger, kinder and better than yesterday here.