Life With Cancer (Part 2): The Whipple Surgery

One of the reasons it is so hard to detect pancreatic cancer is because of the way the pancreas is situated, and it doesn’t cause symptoms. It’s a very aggressive tumor, the nature of which we don’t really understand.
— Dr. Brij Sood, Medical Director, PinnacleHealth-Fox Chase Cancer Center, Harrisburn, PA

By the time pancreatic cancer symptoms do arise, the cancer is often too far advanced for effective treatment.  Signs and symptoms of pancreatic cancer — such as pain in the upper abdomen, yellow skin and eyes, backache, and weight loss — don't typically occur until the disease is advanced. Unfortunately, there are no effective screening tests.

Few cancers need more awareness or research money than pancreatic cancer.  It is the 3rd deadliest cancer and will be the 2nd deadliest cancer in a few short years.  I, and thousands of other advocates wear purple ribbons during its awareness month of November and are committed to heightening awareness of this dreadful disease. There have been few medical advances in the last 40 years. Stuck with a 9% 5-year survival rate, it remains hard to detect, difficult to treat and, compared with other diseases, has drawn little research money. Click here to find out how you can help.


Back to my story...

Because my cancer had spread, it was recommended that I start on a pill form of chemotherapy, called Zeloda, to shrink the tumor.  Surgery, hopefully, would follow sometime after.  I did start on Zeloda, but this was thwarted because of a biliary obstruction that landed me in the hospital and now advanced our decision about the Whipple surgery.  

The procedure to remove my tumor is called the Whipple, named after Dr. Allen Whipple, a Columbia University surgeon who was the first American to perform the operation in 1935.  This involves removal of the "head" (wide part) of the pancreas next to the first part of the small intestine (duodenum). It also involves removal of the duodenum, a portion of the common bile duct, gallbladder, lymph nodes, and sometimes part of the stomach. 

While this is an extraordinary surgery, only a small percentage of patients are eligible. It is only available in early stages, as this cancer typically spreads directly to the liver or abdominal cavity very quickly. The surgery itself is risky as the pancreas is lodged deep within the abdomen, surrounded by—and connected to—other major organs. 

It’s considered the magnum opus of a surgeon’s repertoire.
— Dr. Sarah Schlesinger, Rockefeller University

The Whipple is a very complex operation and continues to be one of the most demanding and risky for surgeons and patients.  Staging of the patient and outcome of surgery is extremely dependent on the experience of the surgeon in treating the pancreatic cancer.  The procedure can take many hours to perform and requires great surgical skill and experience. The area around the pancreas is complex and surgeons often encounter patients who have a variation in the arrangement of blood vessels and ducts. For questions to ask your doctor when considering the Whipple surgery, scroll to the end of this blog.

It is IMPERATIVE that you have the Whipple surgery at a high volume center and from a surgeon who is highly experienced with this procedure.

After having just left recovery from my two back-to-back emergency surgeries, discussions immediately ensued as to whether I should have the Whipple surgery.  Knowing there were serious risks, should this be performed at all?   Was it better to wait to recover, then fly to other institutions across the country? Should I interview another surgeon? Was the luxury of time even an option?  The tumor had spread, but not to my liver which was an advantage. Three days later, I was in the very capable hands of Dr. Reber at UCLA.

Some very dear friends broke my "rules"...absolutely NO visitors! They came at the wee hours of the morning to give me their blessings.  Kathi Koll, Don Robinson, Mary Milner, Jon McGowen.  There are no words to describe my surprise and gratitude at their expressions of love and support. Opening my eyes after surgery in recovery room is something I never want to remember, but will never forget.  I could not move a muscle – only my eyes searched the dimly lit room for some recognition of where I was and what was happening.  I heard other voices, one louder than most with agonizing groans that made me all the more uncomfortable.  I have never experienced such pain and could hardly breathe, let alone move any part of my body.  I am not claustrophobic in the least however that changed in this particular moment.  My bed was in the back of the room with other beds to the side and in front of me.  I felt sandwiched in – much like a gridlock on the freeway with nowhere to go!  I tried to call out for assistance but no sounds came from my mouth.  I felt trapped and started to panic.  No one was paying attention to me and I was in a daze as to what was happening.  And the pain, oh, I had never experienced such agony.

However, I learned I was fortunate!  Being in good shape allowed the doctors to perform this complex procedure in 4 hours instead of 9-11 and I lost only 100 cc’s of blood rather than 400.  After the first 24 hours I did not know how I was going to endure the projected 2-week stay.  I am an avid reader, however nothing could hold my attention and I could not even read the newspaper or scan a magazine.  Television was out of the question and I thought I would lose my mind with boredom. Not to mention how uncomfortable the bed was.  My husband Paul was a great sport and stayed with me in the hospital.  The first morning after surgery I wanted to walk the hospital floors in an effort to get back in shape, and to just have something to do – a project!!  Trying to sit, put my feet on the floor and stand up was a major effort; even with the painkillers, the pain was agonizing and unbearable.  Creating a system to be able to be mobile took some work, but we made it happen and I shuffled the floors – that would be every floor of UCLA with the exception of the pediatric ward. I thought I would be too heartbroken to see those darling children.  If you saw the film “A Fish Called Wanda” and remember the elderly woman walking her terriers, hunched over, shuffling along.  That is what I resembled!  It took forever to cover one floor, let alone all floors of the hospital, but it was a distraction that I welcomed and performed five times a day. 

A beautiful woman named Miriam, who has worked for Paul for 40 years, came daily to help me with sponge baths. I couldn’t take a shower not to mention there wasn’t one in my room!  Allison Roeder, who lived in our building, also broke the “rules” and brought me homemade applesauce.  Who does that?  Allison does!  Kathi Koll was a constant support.

On Day 6 post-surgery, Dr. Reber came to my room in the afternoon – one of his many daily visits.  This sleek man, perfectly groomed, is always smiling, welcoming with his words, makes you feel comfortable and trusting that he cares and knows what he is doing.  Really important to have with a surgeon!  The door opens, he comes to a complete halt and looks at the two women with me.  In perfectly starched white coats, Erica and Michi from Jessica Nail Spa were giving me the most sumptuous manicure and pedicure.  Dr. Reber said, “I guess my wife does this but I have never seen this done in the hospital!”  I replied, “If you keep me here one more day, the hair is next!” A few minutes later, Paul returned after a day of business with a bottle of red wine and several Styrofoam cups in his hands.  He does a double take, laughs, proceeds to open the wine and shares the bottle with these lovely ladies.

I truly believe, because I was so committed to relieving the pain, eliminating the boredom and getting back in shape, my hourly hospital walks helped to reduce my hospital stay from two weeks to six and a half days.

Paul and I provided breakfast and dinner each day for the staff on our floor.  The nurses, physicians and caregivers were so attentive and most appreciative of this gesture.  We wanted to recognize their many unselfish efforts on my behalf. Dr. Isacoff (oncologist) and Dr. Reber (surgeon) were most professional and excel in what they do, but they gave me so much more.  I knew they were really there for me when at times, I felt physically and emotionally incapacitated.  They made me feel as if I was their only patient – after all, it is all about me isn’t it?!!  Trusting them and knowing they were providing the best care and treatment was critically important - something everyone should have with a medical team. 


In future blogs, I will talk about my nutrition, hair loss (2x) and regaining, exercise, treatments, skin care, and how I adapted to my “New Normal," trying to live life normally as possible throughout this journey.  However, after reading this blog, I hope your take away will be:

  1. Listen to your body. It was suggested that my symptoms (what I thought were minor - backache, weight loss) were a result of gas, a pulled muscle or my imagination.  I knew none of this to be true and persisted in requesting tests, resulting in an explanation for my discomfort.
  2. If you are not comfortable with an explanation or diagnosis, do your research and/or get another opinion.  Had I disregarded my instincts and waited, I probably would not be here now.

  3. Use your voice, ask questions, be your own advocate.

  4. Communication is crucial to good health care; you will have greater control over what happens to your body.


Questions To Ask Your Physician When Considering The Whipple:

An open and frank discussion with your physician will help you make appropriate choices regarding your therapy.  The following are some of the questions that may help in making this important decision for the Whipple surgery.

  • How many pancreatic cancers are operated at your hospital on a yearly basis?
  • How many Whipple operations have you performed? 
  • How many Whipple operations do you perform each year?
  • What are the complications in your hands of a Whipple operations?
  • What is the death rate of the Whipple operation in your hands?
  • How many pancreatic cancer patients do you treat per year?
  • What is the average length of hospital stay of the patients that you have treated in the past?
Strength does not come from physical capacity.  It comes from an indomitable will.
— Mahatma Gandhi

 

Laurie MacCaskill