My continuing story of surviving with Pancreatic Cancer

 On February 13, 2013, I went to work like any other day; it was like any other day, except that I felt very tired, although I could justify that, because I didn’t sleep very well the night before. By lunch I was having flu like symptoms, so I decided it was time to go home assuming I had the flu. I called my GP and scheduled an emergency appointment that evening. Low blood pressure rapid heart rate and being pale had my doctor concerned and she sent me to the hospital to be checked; she knew something was wrong.  Initially they thought I was having a heart attack, but tests discounted that.  I spent the night in hospital with an IV in my arm; they were giving me some blood to get my haemoglobin back up.

The next day February 14, 2013 at noon I was sent for an endoscopy (I like to refer to this test as a fire hose down your throat) for more tests.  At two o’clock my life changed forever, that Valentine’s Day has new meaning now. This was the most significant day in my life, other than the day I was born or the birth of my two boys. This was a day like no other; it was the day I was diagnosed with pancreatic cancer. A cancer that they call the “Silent Killer”, and for a very good reason.

This disease has very few symptoms and the ones that exist are usually discounted by most individuals as minor ailments. This was the day that made life in general very precious and possibly now very short.

Pancreatic cancer is not a sexy cancer like breast, lung, prostate, or skin cancer.  It is not out there in the media like the other cancers. There are no physical things you can identify with.  Breasts, lungs, skin, colon cancers are all body parts most people can relate to, and your pancreas is not one of these organs. You cannot see your pancreas and most people I know don’t even know what it does

Pancreatic cancer: what is it, where is your pancreas, what does your pancreas do?  You have no visible means of relating to it.  I had none of the risk factors associated with this disease. The only symptom I had was indigestion.

Later that Feb 14, the doctor came by my hospital bed and informed me and my wife on what they found. Education and having been married to and ICU nurse for 34 years doesn’t prepare you for news you’re going to hear. So when we heard the diagnosis, I had a general idea that this was not very good news. When I looked over at my wife I could see the shock in her face.  Married to an ICU Nurse is both good and bad. She knows a lot about the disease and has seen many of the worst cases possible in her unit and she went from 0 to 60 quite quickly, to the worst case. Fortunately our doctor told her that although the situation was serious, this was not the end of my life as we knew it just yet, and there was some hope at this point and with more diagnoses there is still some hope..

The initial diagnosis took us by completely by surprise.  I was a healthy male who was skiing just 3 days before with no reason to suspect anything, other than being a little tired near the end of the day, which would be normal for any 59 year old doing double diamond downhill trails all day.  In addition I had none of the thought to be risk factors like family history of the disease, smoking, diabetes, except for being in the right age group, but so are thousands of other people in the right age group. I had never been to a hospital for anything more than a few stiches in my entire life.

Here we were starting to plan for our retirement in a couple of years and spending time with our now grown boys and winter vacations at our house in Florida. Everything stopped as the expression goes “dead in my tracks”.

Shock and dismay took over our house for the next few weeks. We did our research on the disease and it looks like the only way to attack this monster is through surgery using the Whipple procedure.  The statistics are not very good for pancreatic cancer.  Only 15 % of the people diagnosed with pancreatic cancer are ever operable. In just over a month on March 25, 2013 I underwent major surgery at the Ottawa Hospital and hoped for the best. 

The internet is a great tool to research medical information, but there is a lot of old and misinformation out there, but one thing we did find was a useful recommendation to find a hospital that did more the 16 of these Whipple surgeries a year.  I guess the good thing about this fact is that, the Ottawa hospital had performed over 150 of these surgeries in 2012, the previous year. This is a shocking statistic. The Ottawa hospital was doing one of these surgeries almost every second day on average, but this statistic gave me confidence in my medical team, as it looked like they have had a lot of practice before my turn came up. The only disconcerting fact that lingered was the overall survival rate for pancreatic cancer was still very low.

The day of the surgery I took a positive approach that there was little I could do and I had to put my life in the hands of others. It is like flying on an airplane; you have to trust the people who are flying and maintaining the aircraft to do the best job they can. I met my surgeon and we discussed the surgery. The IV went in and 14 hours later (10 hours in the Operating room and 4 hours in recovery). I was now in my room with lots of drugs.

With pancreatic cancer a long surgery is good. This is a good sign that they could do something.  If they had gone in and found things had progressed more than they had seen on the CT scan then the game would have been up, they just close you up and give you the bad news. Thankfully I was there for a long time and I was one of the lucky ones.

I came off the sedation slowly. Pain meds have kicked in and life is returning to some normality again. The next day I started my recovery not knowing how long I might have or if everything was successful. The surgeon who performed the procedure came in a spoke with me and my family the next morning. The outcome of the surgery was optimistic but I was not out of the woods by any means.  Statistics show that even after surgery survival is very low for this type of cancer. I do feel fortunate that I was one of the 15% that could even have surgery at all.  Pancreatic Cancer has a mortality rate of 75% once diagnosed in the first year. I have surpassed that now, it’s been 18 months and I’m looking forward to whatever future I still have. 

Day one after surgery was rough, a foot long scar in my gut and 25% less digestive track. The Whipple procedure is one of the biggest surgeries done in the Ottawa Hospital; it involves the removal of the head of the Pancreas (25%), 25 % of the intestine (duodenum), 25 % off the stomach, removal of the gallbladder, and the common duct. The intestine is then reattached to the bottom of the remaining stomach.   Everything coloured in purple in the diagram below is removed. 5+ organs are modified. 

     Image courtesy of Mayo Clinic

I did not want to let this illness get the better of me. Hospital staff encourages you to be up and moving as soon as you can since this gets your internal systems functioning again.  Two o’clock came and I was determined to be mobile, so I went for a walk around the floor.  Standing at the side of the bed I could feel the pulling of every stich inside and out as I moved. It wasn’t painful but I could still feel all the stiches. The walk was short and a slow ¼ mile (I wish) doing a loop around the floor was enough and very exhausting that first day. Each day I attempted to do a little more to get my strength back as quickly as possible. 

Week One: no food, only clear fluids, drugs and blood tests, great stuff and all the things that needed to be done on your way to recovery. However hospitals are the worst place to recover from major surgery.  Someone is always checking on your vital signs, taking blood or giving you an injection, and general noise, every hour of the day.  Rest is impossible.  This is why they give you drugs to sleep.

Week Two:  no food, only clear fluids and, by the end of the week down 20 pounds. I had developed a pulmonary embolism (blood clot). This was not good, now on blood thinners for a few months. A few days later I was then put in isolation because they thought I may have contracted a bacterial infection. This was actually a good in my mind, I knew I was Ok but you get nice private room when they thing you have something contagious. Recovery is much better in a private room; at least you get some sleep. 

Week Three: down another ten pounds,( 30 in total) and fed by IV.  I don’t recommend this as a weight loss program; it is quick but drastic. I am not a big person to begin with (6 ft. tall, but only 185 lbs (before surgery)). So losing 30 pounds was quite significant impact to this body.

At the end of the three weeks things started to look a little better and I was starting to look forward to going home. Three and a half weeks after the surgery I am on my way home. Getting home was a great relief, it felt like I was a new person at home, but still there is a long road ahead. 

At this point I have to thank the staff at the Ottawa (Civic) Hospital. They were fantastic and the surgery team gave me the confidence I needed. One thing I have learned from this experience is that you have to believe in the medical staff. They want you to have the best possible outcome and they work very hard to provide the very best care to you. Everybody’s aim is to get you better quickly, and you have to give them your trust.

Nurses are some of the hardest working people I know. Doctors perform surgery, but nurses keep you alive. They see you all day and all night and have to keep track of multiple patients all at the same time, which is no small task.  I am biased toward nurses though; I have been married to one for 34 years, she has worked in the Intensive care unit (ICU) of the Ottawa (Civic) Hospital for over 13 years and neurosurgery before that. Of course, I consider her one of the best nurses I know, but these accolades do not only come from me they come from many of her co-worker nurses and doctors.

If you live in Ottawa and have never had to use the Ottawa Hospital, we don’t know how lucky we are to have world class medical teams and highly skilled staff at our disposal.  This hospital is one of the largest in Canada, and, for a smaller city like Ottawa, the Ottawa Hospital provides top notch medical care that rivals any hospital in North America for its skills. We should all be thankful we have such a great facility at our disposal.  

After two weeks at home I developed an infection in my gut in the area of my surgery.  Day by day my gut was getting more red and larger and tighter. I called my surgeon and he told me to come straight in to see him.  It was straight into emergency within 20 minutes I was opened again and the infection drained.  Another hurdle was overcome. The infection now gone and I was feeling a lot better but not perfect.

After a few weeks at home I was scheduled to start Chemo. By now I was walking around the block about 2Km daily. This task was not accomplished easily, or at any lightning speed, but it was still accomplished.  Every day I was getting a little stronger and looking forward to some future.

Many a person had told me to retire and enjoy the rest of my life. The thought actually worried me; sitting at home with lots of time on my hands was not a good thing. This illness is something where you can go into many dark corners of your mind easily and you can see your end very vividly. I was determined to look forward and not let my mind go down these holes where I think you can sometimes get trapped very easily. In these dark corners you attitude changes; this isolates you from the people who are trying to help you. Retirement would limit me on things that I still wanted to see and do in my life. I was not going to let this disease stop me any time soon. I just wanted my life to return to something that looked like normal. I don’t mean just traveling around the world: I wanted to spend more time with my kids and wife but they were all working so sitting at home all day would not be an option for me.

Being productive is important to me, so any physical activity was taking a lot of energy out of me and most of my hobbies and things that I like to do required a physical effort, so I figured using my head was less work than using my greatly compromised body.  Many cancer survivors and medical staff tell me attitude is critical in how you cope with this illness. Positive thinking and looking forward is the mantra I have adopted from the beginning, some days it is hard to hold on to this vision, but I just plug along.

I was determined to get back to work as soon as I could, mostly for my own feeling to be somewhat normal though I knew that may not be the case.  Three months later I was back at work trying to be as productive as I could. A positive attitude and not looking back are what keeps me going.  One year and 6 months later I still am moving forward. 

Two rounds of Chemo is no fun but with everything thrown at me so far (clots, infection, chemo, and changes in life style) I have done quite well and hope to continue to do so for some time to come. The two rounds of Chemo didn’t seem to do much to get rid of the remaining cancer cells, but the good news is there are no new sites.  

The journey is not over yet, I have now started radiation Aug 11, 2014.  5 weeks daily of radiation treatments thought they are not painful there are potential side effects from the treatment. I have been fortunate to have had none of these side effects so far, but there is still time for that to occur.  Hopefully radiation will kill the remaining cancer cells. I think this is a long shot but I am hopeful.

Once you have the Whipple procedure done you are now prone to diabetes, because you have so much less pancreas which produces Insulin that regulates sugar in your body. This is a side effect of a poorly functioning pancreas.

Just last week, I have now been diagnosed with diabetes, just one more thing I have to deal with.

Living in Ottawa for thirty plus years and changing who I worked for a few times, I got to know a few people.  Many of these people along the way have become good friends.  It is often said that you never know who your friends are until something devastating touches you. I have been fortunate to have a great number of people touch our family and to come to our aid. Personally I cannot thank people enough for all the support I received; people I work with in general especially my colleagues in DND- DTAES, the medical staff and nurses who work with my wife in ICU at the Ottawa (Civic) Hospital who provided medical support to me and personal support to my wife, and my neighbours, some of whom have their own or their family member’s medical issues to deal with, but were front and centre to help.  Thank you all so much. I hope someday to repay the service to anybody who needs it.    

Otherwise I still try to keep positive and hope for the best. The main reason I agreed to share my experience is to bring up the awareness to Pancreatic Cancer.  I for one knew very little about it and have been stunned by the survival rate. I am lucky to be where I am today and still hope for a positive outcome for a few more years. I am looking forward to passing the 5 year mark and being able to say “I survived pancreatic cancer”