Tell Your Story

[Guest Mel4072]

I look back in awe at the extreme caregiving I provided. I always considered it a blessing that I was able to do it and never "wanted" to be anywhere else.

2011: a trip to ER in the middle of the night, exploratory emergency surgery began a search for his diagnosis. Bladder cancer. He was 39 years old. He was referred to a surgeon to have his bladder removed. When I described back pain to the surgeon, he frowned and postponed the surgery, pending a bone scan. METs were found on his spine and pelvic bone. Chemo began. For 18 months, he endured chemo and its side effects. We had 2 in their first year of college and a 13 year old daughter at home. We were both educators. He was a principal and I, a teacher. Pain meds began immediately. The Drs continues to add to the cocktail trying to lessen his pain from the bone METs. It never really worked. 2 weeks before he died, he got tired and gave up. The cancer had spread to his liver and his body began the process of shutting down. A trip to the emergency room confirmed that he was close to death. A kind Dr confirmed what his onco would not, he was close to death.

Hospice came in Thursday evening. They stopped by once a day for about 30 minutes to see if I needed anything. The director told me "this is the hardest thing you will ever do." I had no idea that I would do it alone. Sunday he passed. About 30 minutes before he passed, he saw God. At the moment he passed, a neighbor (who was also a widow) knocked on the front door with lunch in hand. My best friend left church and came bursting in, saying she knew she needed to be there for me. He died at 11:15, the same time our church service ends and on Palm Sunday. I already had an appointment to meet with our pastor at 12:30 at my home that day to pray for us. Ironic? About 75 people showed up at my house within an hour. It was insane! He was a very private person and didn't want company, so I kept his condition very quiet. When I asked people why they showed up, they said "God had put it on their heart".

Perspective is a funny thing. When I realized he had stage 4 cancer, I wanted to run. I wanted to exit my life and responsibilities. I was so afraid. It wasn't easy taking care of him. Meds administration, appointments, pain, etc. through the process, my perspective changed. I found it to be a blessing. He wasn't alone. There was nobody who loved him like I did, who could comfort him and maintain his dignity and privacy (which he wanted). Being with him in his final days was the most intimate experience I have ever had. I likened it to child birth. A completely vulnerable person, experiencing a spiritual and physical process. It was a blessing in my life.

Am I changed? Yes. Forever. Do I resent it or regret it? No. Absolutely not! Would I do it again? It was the most selfless act of love I've ever given.

Yes. I would do it again.

[patriciad]

I am sure that I wrote this somewhere else but the story is clear in my head-like it happened yesterday.

 

It was June 2008.  He complained of feeling very tired.  Couldn't keep up with the guys at jujitsu.  He had lost weight-thought it was from all those rigorous workouts.  For the first time in 24 years I bought him size medium shirts-red flag. 

 

He saw his doctor for a physical in July-anemic. Dr didn't seem concerned but we pushed.  He had a colonoscopy.  Nothing.  Endoscopy.  Nothing.  CT scan of abdomen.  Nothing.  Doctor decided he had "viral syndrome".  I made an appointment in August with an oncologist/hematologist.  He minimized all of our concerns.  I remember walking out of his office and Bill said"Well, that was a waste".  I watched him that whole summer looking at him and asking friends"Doen't he look a bit pale?"  "Look at his lips".  The glow had gone from him.  When the beach club closed on Labor Day I remember telling a friend that I felt like the other shoe was gonna drop.

 

In November he fainted at a fundraiser at church.  His doctor saw him the next day and said he must have suffered from low blood sugar.  He had hip pain and figured it was from a yoga injury.  In November he had a cough.  I finally convinced him to go to the doctor.  He gave him antibiotics.  Still had a cough three weeks later.  I sent him back and told him not to come home without a chest X-ray.  I was praying he had pneumonia. His doctor had him get a chest X-ray and he saw a spot on the lungs.  Two days later he had a CT scan and multiple spots were found on the lung.

 

I knew, from the moment the doctor said there were spots on the lungs, that it had metastasized.  It wasn't a hip injury or low blood sugar.  He had lung cancer that had metastasized to his brain and hip.  We found that out with a PET scan a couple of weeks later but I knew on December 18,2008 that he was really sick.  The other shoe had dropped.

 

He had chemo, radiation and cyberknife for the brain lesion.  He fought like he had a real chance.  137 days after his diagnosis, he died at home in his own bed.  His iPod was playing his favorite songs and we were all there.  It was a beautiful sunny April day.  The doctor from hospice came by and saw him.  He took off the oxygen mask and within minutes he was gone.

 

I would do it all again in a heartbeat.  Those days camped out in our bedroom, just hanging out together, were some of the best days of my life.  I have never felt that close to someone.  I would have kept up that pace of caregiving forever if he hadn't been in such pain. That moment came when I had to tell him it was okay to go.  It couldn't have been further from the truth but it had to be said. 

 

I feel so privileged to have known and loved someone so deeply.  What a love!

 

Pat