PATIENT AGE (AT DIAGNOSIS): 62
PATIENT GENDER: M
PATIENT HISTORY: 40+ year smoker; Jewish ancestry; adult-onset diabetes 5 years prior to diagnosis; family history of lung cancer (mother)
DIAGNOSIS: Locally advanced, unresectable Adenocarcinoma of the Pancreas- 2 cm; single positive peripancreatic node; no distant metastases.
DATE OF DIAGNOSIS: 4/11/09 (CT SCAN); 4/23/09 (FNA biopsy)
TREATMENT: 6/09 - 8/09: Gemcitabine/Oxaliplatin 8/09 - 9/09: GTX
DATE OF DEATH: 11/8/09
PLACE OF DEATH: Daughter's home in NY
MY RELATIONSHIP TO PATIENT: Daughter and Primary Caregiver, age 36 (during patient's illness)
It has been 1 year, 5 months, 3 weeks, 4 days, 16 hours, and 4 minutes since I held my dadís hand and watched as he took his final breath. My dad was diagnosed with Stage III, locally advanced, non-resectable pancreatic cancer in April 2009. He had just turned 62, and retired the day prior to his diagnosis. Surgery was not an option and chemotherapy failed him. Today, instead of enjoying the retirement that he worked all of his life for, he is a statistic of pancreatic cancer. During his final days, Dad survived for 10 days without food or water while in a coma the entire time. He fought right up to the end, just as he said he would. Ironically, after 2 heart attacks, 3 stent placements, a carotid artery that had an 80% blockage, and a 6.5 cm abdominal aortic aneurysm which couldn't be repaired due to his cancer, the hospice nurse insisted that he lasted as long as he did because he had a strong heart!
I was my dadís primary caregiver- his only caregiver, really- for 7 months and 7 days. I moved my dad from Florida to my home in NY, relinquished my life, and took his as my own. I am grateful for amazingly wonderful friends and neighbors who acted as surrogate parents to my children while my dad and I reversed our roles as parent and child.
During my dadís final days, I kept vigil for 2 weeks, and it was so emotionally exhausting. After a week, I just wanted him to let go. I wanted him to have peace, and I wanted my old life back. I had not slept at all in almost 3 days, and I missed my children, who had not had my attention for 7 months. Oh, how I regret that I wanted that now!
Dad went through many changes while in a coma, and there was a time when I thought he was actually improving. I was wrong. Two days before he passed, his blood pressure became very high; his temperature rose to 104 degrees; and he suffered from extreme terminal agitation. My dad was still in a coma, but was screaming out incomprehensible sounds as though he was in pain and swinging his arms in the air as if he was pushing away someone trying to take him from this world. I know my dad was not lucid, but I will swear on everything that I am and all that I know, that my dad cried, ďJodi, helpĒ. As his caregiver, I remembered my promise to my dad: I wonít let you die in pain. In an effort to calm him and fight his pain, I swiftly increased the dosage on his morphine pump, and tried desperately to give him oral doses of Roxinol, Ativan, and Haldol with a medicine dropper. Because my dad could no longer swallow, this was a long and grueling process, as I waited for the medication to be absorbed in his mouth while simultaneously physically restraining him. Of course, since my dad had lost 60 pounds since diagnosis, and weighed less than 125 lbs, this was easier than it could have been. Three hours later, the nightmare finally ended with what appeared to be a seizure. One side of his mouth drooped as though he had suffered a stroke.
I knew then that my dadís journey was coming to an end, and called my brother, Mike, and my aunt to tell them it was time to come. My decision was a difficult one, because although they had expressed that they did not want to see my dad in the state he was in, I knew that I needed to time it just right so that I could afford them both the opportunity to change their minds and say goodbye prior to Dadís passing, while not imposing on the time they would have to take from work in order to be here for the funeral as well. Fortunately, I did, and they did change their minds.
The day that my dad passed away, November 8, 2009, was different from all of the other days. His breathing pattern changed. He had been experiencing the Cheyne Stokes breathing for 2 weeks, but the breaths became further and further apart, and he just seemed to be fighting for every breath. Yet, he seemed peaceful. By noon, I knew Dad was going to die that day, and I didn't leave his side at all. I was obsessively monitoring his vitals every 30 minutes- sometimes more often. I kept a log, just as I had done for 7 months.
Around 3 pm, Dad's blood pressure began to drop, and his pulse was very weak, sometimes not registering on the machine. He looked more and more peaceful as the day progressed, but when he breathed, his jaw did all of the work as his chest rose and fell. This continued for 6 hours. At 8:45 pm, after my girls were in bed and asleep, I somehow felt that Dad was leaving us. Nothing had changed, but I felt it. I cannot explain how.
At 8:50 pm, I crawled up beside my dad, held his hand in mine, and laid my ear over his heart. A few minutes later, when I said, 'I love you, Daddy', he tried to sit up and squeezed my hand very hard. And then....one final breath, followed by a movement of his jaw which I knew brought him no air.
I had told Dad it was ok to go so many times, but at that moment, I found myself begging my dad not to leave me in the voice of a child I did not recognize. I begged him to please stay, but he didn't hear me. I began to make deals with a God I am not even sure exists, if only I could have just one more chance. At 9:00 pm on November 8, 2009, my dad's heart stopped beating, and The Beast had won. My brothers, my children, and other family members said goodbye, and then I sent my girls across the street to my friends/neighbors who were waiting. I knew that I needed to call Hospice, but I wanted time alone with my dad first. I cleaned Dad up and gave him a shave. I combed his hair and cleaned his mouth with a swab. I changed his clothes and I took off the ring he wanted me to have, which I had placed on a shoelace around his neck a few weeks prior. I propped his head on his pillows and put a smile on his mouth. He was still warm....and then he wasn't.
I stayed with Dad until his blood ran cold and his body stiffened, remembering almost 36 years of my life and questioning everything I knew. I was exhausted, both physically and emotionally, and something as simple as breathing became a chore for me. With each breath I took, I was reminded of my dadís last. That one image haunted me then and continues to haunt me now. I live with it, sometimes for it, yearning for the serenity which can only come from the strength of forgiveness.
When the funeral home came to take my dad away, I couldnít let the men touch him without me. It was my job! So when they brought that ugly, black, vinyl bag inside, I knew what I needed to do. I assisted the men in placing my dad in the bag, closing my eyes for a brief moment, and hoping with all of my might that when I opened them, I would wake up from what had been only a terrible nightmare. I gave my dad one last hug, spilling tears on his face, and placed the tag on his toe. I can still hear the sound of the zipper as I closed it, symbolizing the end of the journey we took together.
As the men wheeled my dad outside, I watched it all- every moment- until the van disappeared beyond my sight. I fought back my urge to chase after it, raced back inside of my home, and within 45 minutes, cleared Dadís belongings from my sight, even putting all of the medical equipment into the garage.
At 3 am, with my dadís ring hanging around my neck, I crawled over to the space on the floor where my dadís hospital bed once was, hugged the pillow which still smelled of him, and finally slept for what seemed like forever. For 7 months and 7 days, I detached myself emotionally so that I could handle the day-to-day tasks of caring for Dad. I told myself that I would deal with my emotions when he was gone. I thought that I was prepared for what I would feel when this time came, but I wasn't. I always knew that this disease would take my dad's life inevitably, but deep inside I subconsciously believed that I could save him. I wanted to save him, and despite my efforts, I couldn't.
Today, eighteen months later, my memories continue to haunt me and I am still overwhelmed with guilt. I live with the guilt that I sacrificed quality time with my dad under the pretense of taking care of him. I live with the guilt that the day I took on the role as my dad's caregiver, I stopped being his daughter. I live with the guilt that I probably hastened my dadís death by overmedicating him, but I also live with the satisfaction of knowing that in the end, I respected his wishes to die pain-free and with dignity. I kept my promise.
I have learned many things since my journey with my dad. I've learned that I should have made every day, every moment count. I've learned that for all of the times that I blamed my dad for his wrongs, none of them mattered in the end, and none of them matter now. I've learned that no matter how old you are, when you lose a parent, you are once again a child, and life as you knew it is forever changed. Iíve learned that contrary to my beliefs as a child, my dad wasnít invincible after all. Iíve learned that the day that my dadís heart stopped beating, something deep within me died as well, and that something is one which will never live again. Iíve learned that if I could have just one wish, it would be to have 5 more minutes with the first man I ever loved.
I miss you, Dad! Not a day goes by that I don't think of you and wish that
somehow, some way, life came with an eraser. :(