Caregiver Story

Kelly May – Wife of Whipple Patient

Life can change in an instant

Life can change in an instant.  Nobody understands that more than I do now.  I made him go to the ER because I thought he had a bad case of food poisoning or just a bad case of the “man flu”.  I wish now that would have been the case.  Having a bomb dropped on us on a Friday that there was a “mass” on his pancreas and being sent to a top notch hospital in a matter of an hour is enough to give anyone a nervous breakdown.  But I HAD to keep it together.  For him, if only for him.  I tried to keep it light all weekend while we waited for the dreaded test on Monday.  All the while, googling and checking out things on the internet that made me want to scream.  DO NOT DO THAT.  Once the endoscopic ultrasound was done and we were told he would need the Whipple surgery in order to make sure he didn’t develop cancer, we at least had a game plan.  
So they wanted to slice my husband open from chest to belly on the chance he could get cancer?  WOW!  I wasn’t about to put my husband through a life altering surgery if he didn’t really need it, so I got him an appointment with one of the most well known surgeons at Johns Hopkins.  When they seconded the diagnosis and the plan, I was finally able to breath a little sigh of relief.  Now we were waiting for April 3rd, the day of the Whipple as I like to call it now.  To say I was terrified was an understatement.  So many feelings…would he make it through the surgery, would he be MY HUSBAND when he did, would they find something more in there and change everything, would it be cancer?  What a long day of waiting.  About 8 hours before the doctor finally called and said it was over.  As I was taking the elevator to see him in post op, my mind was going to a bad place, would I be freaked out by the tubes and the sight of him, was I strong enough to do this?  I HAD TO BE, there was no other option. 
The next few days in the hospital consisted of lots of small things to make his life easier.  For anyone having the surgery I strongly recommend having a full time advocate there with you.  You will need it, even if it is simply to hand you the remote or water.  Moving around is the most uncomfortable part of the whole thing.  Having someone there to help is imperative.   We had good days and bad days, but for the most part he came through like the champ he is. I forced him to walk a lot everyday, and I do believe that is the key to getting everything working in the right direction if you get me.  We were waiting on one thing.  PATHOLOGY.  We left the hospital still not knowing what the outcome would be.  
Being at home he was more at peace, but waiting for the report was slowing taking its toll.  Why?  We were told by everyone that they caught it “pre-cancer” phase.  So when the nurse called and he casually asked her if the report was back and she told us Stage 1 Adenocarcinoma we were stunned.  Again, life can change in an instant.  My mind went back to every report and every statistic on the internet that said people with any form of pancreatic cancer don’t normally live beyond five years. In my mind I had just become a widow, It was like I was watching a car accident happen in slow motion and I knew what the outcome would be, but they were forcing me to watch it anyway.  MY life, OUR life, HIS life as we knew it was over. 
Then came the game changer.  The pathologists and the surgeon didn’t agree with the diagnosis, so they sent my husbands slides to major medical centers across the country.  When visiting the doctor for a follow up appointment were were told that they had changed the final pathology report to no cancer present, but a mid to high grade dysplasia that would have become cancer quickly if left untreated.  Say what?  How do people in the medical field disagree on a diagnosis?  Isn’t there like a dip stick that says yes or no?  Apparently not.  So for now we live on the hope that they were right, and that he will continue to stay cancer free.  Sometimes it is  hard to swallow the possibility of it showing its ugly head again and it definitely can.  All we can do is live life for now, enjoy every moment and hope that we still have a long life together.  I do have my dark days, the ones where my mind goes to a bad place and I imagine a completely different scenario, but I have to quickly remind myself that we got a second chance.  We were able to stare death in the face and so far we are winning.  I will hang on to that with every fiber of my being.