This past week my daughter Claire has been out of town on vacation to experience the musical force that is Taylor Swift. She had a fantastic time in Dallas and enjoyed the concert immensely. On Saturday, she will be moving out and getting back to her own life. It has been a blessing to have her here with me as I transition to a different life. For the past nine months she has sacrificed her own life to first be one of Amy’s handlers, and then to be mine. My wish is for her to focus on her own life and happiness. I will be forever grateful for her sacrifice and love.
It has been just me in the house this week and I have found it more difficult than usual. On Sunday, I prepared a nice meal and sat down to eat. There was an empty chair across from me. It hit me hard. I lost my appetite as I was overcome by grief.
Later, I forced myself to sit back down and eat my meal. In the silence, I felt regret as I reflected on Amy’s last two weeks. I find it difficult to discuss my emotions around these events. I foolishly assumed that since her cancer marker had come down so dramatically from nearly 6,000 to less than 100, that as long as it did not dramatically increase, we would have some warning of a trend in the wrong direction.
Instead, her pain increased over a period of two months as the cancer marker increased only incrementally. I was lulled into thinking I would have more time.
Early in Amy’s diagnosis, I wanted to talk about potential scenarios around her health in order to understand her wishes if her disease progressed. Amy refused to talk about such scenarios. She was adamant that she was going to be the one in a million to beat the odds and wanted to totally focus on her treatment and remaining positive during the process.
As some point I pressed the point with her. It was an uncomfortable conversation. I had to know her wishes prior to any potential developments even if they were unlikely scenarios. We finally had a very short discussion on the matter, but I was able to ascertain her preferences.
On Monday, exactly one week prior to her passing, Amy fell. I was at the local Starbucks getting her a cheese Danish when I got the call from Claire to come home ASAP. I raced home to find her sitting on the floor. Claire had been right next to her when her legs gave out and she fell hurting her leg. In an abundance of caution, we felt it best to call 911 and have her transported to the hospital for an evaluation. Her platelets were low, likely from the two weeks of radiation she had just completed. She was given a blood transfusion, discharged and sent home.
Because she had recently completed radiation for disease progression in her bones, we were not overly concerned. Amy, however, was becoming uneasy. The pain was becoming more than a minor annoyance. In the weeks prior to this incident, it had passed a threshold that caused her medical team to add morphine for her pain management at increasing doses.
On Thursday, I was bringing Amy lunch when she asked me “Am I dying?”
“No.” I said, “we just have to get you past the effects of the radiation and the pain it is causing. Then we can get you started on your new chemotherapy regimen.”
Amy was reaching out to me and I blundered it. After months of not talking about it, she was finally ready to talk about dying, but now it was me who was not ready. I would not even concede it was a possibility.
On Friday, Claire alerted me that Amy was slurring her speech and couldn’t swallow. Given the developments earlier in the week, we thought it best to return to the Emergency Room. We alerted her Oncologist and set out for the Emergency Room.
One day later, she made the decision to enter hospice care and just two days after that, Amy passed from complications of her cancer. Most of that time was under sedation per her request from our previous conversations. I expected more time to say goodbye. There are so many things I would have liked to have said to her. To thank her for the joy she brought my life. For giving me her love, support, and wisdom throughout our lives. And so much more.
We are approaching six months without her. As I look at her empty chair, I feel numb and haunted by regret.
This site is mine and mine alone. I will not tolerate trolls of any kind in the comment sections and will block negative comments and abusive individuals. Denigrating medical professionals will also not be tolerated on this site. Our health care system is far from perfect, but I have found the vast majority of health care workers to be competent and possessing a degree of empathy to be admired and emulated.
The regrets are so difficult to deal with. Thank you so much for sharing, Mark.
❤️ no regrets, you loved her and was her rock through all of this and she talked about it to me!! You were lucky to have one another❤️ no regrets, if you do, it will eat you up! Just remember the love you shared!
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I am so, so very sorry for the deep pain, sorrow and loneliness you are experiencing. Amy touched so many hearts in her lifetime – bringing joy and smiles. Hoping someday the joy she exuded gives you strength to attack the day with joy.
Very touching Mark (and heartfelt story). Thank you for sharing it.
Sending love and hugs to you ❤️your writing is so beautiful and heartfelt , I’m crying as I read these reflections 😢Amy is truly missed and your love for her was boundless and beautiful ❤️ I can’t imagine your pain .