FollowIt’s been a tough 4 1/2 years since I heard my dad had cancer. Weeks in the Neuro ICU waiting for the blood results to get better to operate on a grapefruit size tumor in the frontal lobe. The worse kind of cancer glioblastoma multiforme (GBM). It was a hematology issue and as good as the nursing staff at Lehigh Valley Hospital is (it’s exceptional) they had a hematologist of the day, which did not work.
My sister Melinda found a doctor who does bloodless surgery for Jehovah’s Witnesses at the Pennsylvania Hospital in Philadelphia (the oldest hospital in the US near Independence Hall). Dad was finally able to have surgery, and it was successful and complete.
Later my dad was able to be part of a vaccine study at the University of Pittsburgh that was very successful and kept him mostly cancer free for the next 4 years. He was the star of the study. Someone with glioblastoma multiforme who lived far, far past the 12-18 month life expectancy.
Then in August my dad came home driving with the left side of the car scraped up, and the left mirror almost off the car. My mom took him to LensCrafters to get his vision checked and it turned out that we was missing a big chunk of his peripheral vision. His license was pulled, and time to see the Oncologist again. Turns out the tumor was back it was big and in the difficult to reach right thalamus a control center of the brain.
Back to Lehigh Valley. Where they said they couldn’t operate and it would be 2 months. The same doctor at Pennsylvania Hospital was able to operate again. The surgery was successful, but there was a stroke on the table and removing the thalamus also effected his motor skills. My dad was not able to move his left side.
Later came a few weeks of rehab, a month in the nursing home, and 3 months in hospice. Almost 6 months without able to get up. Craving nothing more than a shit, shave and shower. Wanting to get up. Wanting to be active. Not able to. Only got up out of bed with the help of physical therapist. Using the Hoyer lift at home was too difficult. Tried once to bring him to the dining room for dinner, but just far, far too much.
Dad kept forgetting he couldn’t use his left side. At rehab, he was coughing blood and back to Lehigh Valley HSP. He may have had another stroke there. I was called back to Pennsylvania, not long after leaving him after about a month off from work.
He thought mom was holding him up from getting out of bed. Said if I could get him out of bed with a stool, it would be okay. Unfortunately, okay was passed. He was stuck in bed. Hospice, pain management, preparing the soul to be released from the body. The body broken down. My dad was only 66 when he died. His mom lived to 90, his dad to 86. Mom expected 2 more decades I did too.
About a month ago, I was called back to PA for 2 weeks expecting it to be soon. Dad still had some cognitive ability. I found a copy of the amazing and seminal jazz record “Kind of Blue” and watched the documentary about how it was made with him. Dad loved jazz. Always loved jazz. Took me to see Dizzy Gillespie when I a toddler and made happy noises.
Loved jazz while I got him an iPod shuffle at the hospital, with some of his favorites like Miles Davis, Duke Ellington, Ella Fitzgerald, etc. Kept hearing stories about jazz, often the same stories. I know the music helped him. Reached a part of his brain directly that wasn’t the same.
It was a slow decline, but much worse after the surgery. And much, much worse the last month. Dad looked so much older in just the last 3 days we spent together. His light brown hair touched with gray, became white. The death rattle came. Moved him to his side, gave his lips water, and left the room for a second and he died around 3:45pm on April, 1st 2013.
It’s just Monday. I may be crying more writing this post now than I have since Monday. There was a sense of relief. My dad’s soul was released from a body broken down in pain. If you ever experience the miracle that is someone passing firsthand, you can see how the soul is in the body, then gone. My dad wasn’t there after death, just like my father in law.
So much pain in the last 14 months, my father in law’s sudden illness starting on President’s Day Weekend, 2012 and dying 6 weeks later. My dad doing pretty well, driving to see Walter in early March, 2012 while he was still doing pretty well and entertaining his vast extended family. Dad drove to the Unitarian Universalist General Assembly in Phoenix, AZ this summer and then up to Boise, Idaho to see my mom’s best friend, Mary Hester in an RV. He loved the idea of the RV, me and my mom thought it was a PITA. A good month on the road in mid-summer. A few weeks later not able to drive at all a new brain tumor.
I guess it was meant to be their last trip together. After 42 years. The last long trip was something else entirely. After my dad went to home hospice just before Christmas, mom almost never left the house. She wanted to be close, wanted to manage his medications. Tried the best he could to be a caretaker. The aides were there once a day to change him and clean up the bed. The nurse came once or twice a week, and was on call. Being a caretaker of hospice is so challenging. Humans make so much mess without a bathroom. So, so much mess. Nothing brings humility like changing your dad’s diaper and wiping his ass.
I’ve been back since yesterday afternoon. Did my first poetry feature last night, it was wonderful and affirming. At a bodybuilding competition all day today, a friend competing. Amazing but exhausting. Going to a poetry reading in Westbrook this morning, hearing that Alice Persons would like me to submit to her Animal Spirits poetry book sequel.
I feel like a weight has been lifted. I have been worried for the last 4 1/2 years when cancer would return. Since late August, I have been worried it would be soon. The surgery may have killed my dad. That may have been a blessing in a way if it did. I have missed 6 weeks of work in the last 6 months. Read less, wrote less, still blogged every day.
Got called back 3 times expecting death could be soon, on the 3rd time it was. Dad was almost unresponsive and hardly there. Whatever your beliefs of the afterlife, and as a UU theist I just don’t know, I am glad he is rid of his pain and his suffering. I felt his suffering in my heart. I felt in my soul. That worry is gone. That suffering is gone. Dad’s no longer here. I did expect him to live longer. But it’s a blessing I had these 4 1/2 years. But I need no more death for a long, long time. I have had too much in the last 15 months. Two beloved and close family members, two entirely different experiences.
To all those who are suffering brain injury and loss I offer my sympathy and prayers. To all those family members dealing with illness I offer my prayers. To all those seeing the slow death of Alzheimer’s, I offer my prayer. I offer my energy and intention. To get better with cancer. To get better with Alzheimer’s. To understand the brain more. Seeing your beloveds slip away slowly is one of the hardest things I can imagine. Whether you are 2 miles away or 400 miles away.
Being a caretaker is so challenging. Blessings to the aides that cleanup. The friends that listen. The parishioners and friends who pray. Blessings to nurses who listen. Doctors who try their best.
We have to get better, we must get better. I miss my dad. I’m glad his soul has been able to leave his broken body.
Peace. Rest in Peace.
Blessed be.
Edmund
Here is me as a baby, and me with my dad as a toddler. I have a huge head.
