Diagnosis: Acute Myeloid Leukemia (AML). A Journey

I have avoided writing this post for over a month. The trauma of watching George decline and make the transition from hope to resignation was almost too much to bear. It still is sometimes during my day. It’s not just the absolute devastation of losing the love of my life, it is also the cumulative trauma of living the past two years…of watching George valiantly fight his disease, watching him choose to remain positive and hopeful while doing my own research and knowing the odds were stacked against him. But, not being able to share my fears or what I learned for fear of crushing George’s spirit and killing his optimism and will to fight. But the delay has been from not being able to think of it all without weeping or feeling intense pain and sorrow. I think I am ready now to put the last couple of weeks of George’s life into words.

The first week of January was rough. George was in the ICU, on high flow oxygen now, unable to walk on his own, and relegated to using a bedpan (if he could get it on time. Normally, he would just have a bowel movement on the pad in his bed and then have to call for the nurses/staff to clean him up). It was so demoralizing for him at first, but he learned to adapt pretty quickly as he always did, bless him. When he wanted to move to the recliner in his room, he would have to be lifted by a crane-like mechanism that engulfed him in a tarp-like basket.

George was exhausted and his ability to focus on anything written was decreased. He was insistent, however, that he was going to complete the cyber-security training required by his work because if he didn’t complete that task by January 4, he wouldn’t have access to the network at work. So that’s what he did. He got frustrated a few times and said his glasses weren’t working anymore. And he missed several questions that he had to re-do. But he got it done.

When I talk about his incredible work ethic and his optimism about beating his disease until the very end, this is what I mean.

He got the task done, but I didn’t think he would be returning to his job. I could see the writing on the wall.

On Friday, January 5th, a couple of oncologists came into George’s room to talk to him. They told him that the ICU doctors and staff had done a good job dealing with his acute issues, which is what the ICU team is responsible for. They don’t deal with long term issues, like cancer. They just get you stabilized and then send you out to a room on the regular floor. The oncologist told George that regardless of what the ICU team does, he still had the leukemia to deal with. He still has blasts present in his peripheral blood that has not responded to the chemo and that is in all likelihood interfering with the treatment he was getting in the ICU (the oxygen demands, for instance). He said basically, George was out of treatment options and that he should consider going home to be with his family and not spend his remaining time in the ICU.

That conversation was heartbreaking. Absolutely devastating. After the doctors left, he broke down in tears and said “I’m tired. I want to go home!” And I said, “Yes, my love…let’s go home.”

Once George decided he wanted to go home, we contacted the nurse who contacted the palliative care team and hospice. Of course, being a Friday afternoon, nobody got back with us and we had to endure the entire weekend without any progress. George was ready to go HOME.

One of the most wonderful physicians I have ever encountered, Dr. Fall, came in to talk with George Friday afternoon. She asked George about his decision to go home and said she thought it was the best one. She also said she had talked with the oncology team and they told her that once George left the hospital and blood infusions stopped, he would have mere days left on this earth. I don’t know if George heard that, because once we decided on hospice, he said “I don’t want to be hanging on for months.” I said, “My darling, you won’t.” He said, “Really?” Dr. Fall asked him if he liked donuts. He said he did and she asked what kind. He told her he liked the cake donuts. Saturday morning, when I came in, there was a box of cake donuts compliments of Dr. Fall.

Dr. Fall also asked George is he was hankering for anything else and he told her yes, chocolate ice cream. So during one of her breaks, Dr. Fall went out into Philadelphia and bought him two pints of gourmet chocolate ice cream. My God – what an incredible and selfless human being. Above and beyond.

Finally, on Monday the hospice representative came to speak with us. We had two options, inpatient hospice at UPenn or home hospice and George just wanted to go home. So, we chose home hospice. When the rep came and talked to us, she said that because of George’s high oxygen demands, it wouldn’t be safe to transport him home. He would need to go to their inpatient facility first and see if they can lower his oxygen needs and then send him home. What a crushing disappointment! He was so ready to go home and time was precious, but what could we do? Things got rolling the next day and finally and he was transported to VITAS hospice in Philadelphia Tuesday afternoon ( January 9).

I was so upset because I wanted George to spend his last days with his family in the comforting familiarity of his home. I wanted it because HE wanted it. I knew it would be work for me, but I was willing to do whatever was needed. When we left him at VITAS Tuesday night, I was sad for George. When we came in Wednesday morning, he said he was good with staying there and that he was comfortable and they were taking good care of him. That made me so happy!! Because if he wasn’t going to be able to go home, he wouldn’t spend his last days resentful and disappointed. I said, “It’s like being in a hotel, isn’t it? Nobody coming in at night to take your blood, poke or prod.” And he smiled and said yes.

It was kind of funny, because he asked several times how he looked. I told him he looked good! And I took this picture to show him himself. It is the last picture ever taken of him with his participation. Look at that little smile…even in hospice. This picture actually breaks my heart. I love him more than I can ever express in words.

We had him cognitively with us for a couple of days. Father John came and gave him holy communion and holy unction one last time.

After that, George started to sleep more and more and started speaking some nonsense, which actually gave us some comic relief. Then his breathing started slowing…that went on for several days and it was excruciating to watch. We spent 10 hours a day at his bedside beginning on Wednesday, January 10th. I don’t think I have ever cried so much up until that point.

The kids were there every day all day as well. George’s first wife, Jeannine came and her son Ben, George’s stepson drove in from Florida to be there with George. He was truly surrounded by people who loved and adored him.

We stayed all day on Sunday and left after 6:00 pm for home. I got the call I had been waiting for at 10:00 that night. George has departed this life – Sunday, January14, 2024. It was actually a relief to get that call because I honestly didn’t know if I could do another 10 hours at his bedside watching and listening to him struggle to breathe. It was so traumatic. I called Michael at his mother, Jeannine’s house and told him and he said he felt the same way.

The oncologists were right. Once the blood transfusions stopped, the leukemia cells (blasts) were able to overpopulate the blood and crowd out the red blood cells, which carry oxygen. He went to hospice on the 9th and passed away on the 14th.

It has been such an inspiration to watch George navigate his diagnosis and his disease with such optimism and hope. He taught me how to live…and how to die. I will miss him forever and there will always be a George-sized hole in my heart. He was one of a kind. Irreplaceable. A gem of a human being. My soulmate, best friend…my everything. I am undone.