Recently I corresponded with a patient who was just diagnosed with amyloidosis. Her presentation was unusual (what amyloidosis patient isn't) But it struck me that she only had one organ involved and was not predominately kappa or lambda. Generally, primary amyloidosis is of one clone or the other. It turned out that she likely has familial amyloidosis, which is a much better prognosis. However, I was not really prepared for her response to such news; she felt guilty. She felt guilty that she may have passed the gene for amyloidosis to her children. I wondered incredulously, how can you feel guilty for something that occurred 40 years ago over which you had no control and may not even occur. To try to assuage her guilt, I reminded her of the millions of good genes that she also gave to her children. However, I also realize that any loving and responsible mother can never be completely free of her duty to her children.
The very next day I was seeing a patient of mine in the clinic who has an incredibly difficult decision to make. She has metastatic bladder cancer and has already failed one course of chemotherapy. The toxic drugs made her life a living hell and she could not complete the course of treatment. The cancer is now in her lungs and her oncologist has suggested some experimental treatments. The potential for success is unknown. The expected side-effects are definitely known.
As she shared with me the acknowledgement of her own limited lifespan, she expressed guilt. Flabbergasted, I asked how she could feel guilt about dying? Once again, her thoughts were not of herself, but rather for her children. They wanted her to do everything possible to continue her life, even if that life is, for her, miserable. She felt that to die without trying everything might let them down.
We spoke of a balance in the middle; doing just enough to prolong quality time without doing what will not work and stealing those good days that you have remaining. Unfortunately, it is impossible to know exactly where that balance is.
I do not generally feel guilt, but I do have a strong sense of duty. Maybe it is the same under a different name. When I commit to something or someone, I cannot let them down. Last June it was clear that the bone marrow transplant failed to control my amyloidosis. I was disappointed for myself, however, even more so, I was somehow disappointed that I might let down those who had gambled on putting a heart transplant into an amyloidosis patient. I was the first primary amyloidosis patient to get a heart transplant at Stanford in many decades. I was fully aware of the reason that this practice was abandoned. There were many, and still are, who question the prudence of giving a heart to someone who is incurable. This, of course, begs the question, "How long must I live to make this great effort on my behalf worth it?" I felt this even more poignantly when soon after I became very ill with cytomegalo virus. At the time, I mistakenly thought that my disease had irreversibly progressed and that I was going to die soon. The thought that crossed my mind was that if I die, they might think twice before offering another heart to an amyloidosis patient. I felt it was my duty to live long enough, as in the words of Tom Hanks in "Saving Private Ryan", to 'earn this'.
How does one measure the worth of a life? Is it in the number of days or rather what you fill those days with?
I have seen well meaning family members demand that everything be done to add more hours and days to a life that is ending. Who decides when any individual life has satisfied the purpose of its creation?
I guess this is why there are feelings of guilt surrounding the act of dying. It is because we don't know these answers and we wish that we did.
My father died well. he was surrounded by his children and my Mom and quietly passed at home. However, six weeks earlier, his oncologist offered him one last course of chemotherapy. We all knew that it would not work and that he would be miserable if he took it. The offer was more out of obligation. Initially, my dad wanted to proceed and seemed annoyed that we might question the value in the treatment. I suggested to him that since he was doing so poorly that day, the drug were certainly make him worse, but that if in a week he had improved, we could start the chemotherapy then. He understood and accepted that plan; because in it there was still hope. I certainly still had hope that he would improve. He never did. But that was OK as his last weeks were at home with his family. I know that he had fulfilled the purpose of his creation. Filling more days would not have changed that.
So what do loved ones do that have to watch with powerless guilt as a friend or family member begins down that final path? They must understand that the dying feel guilty too. They need to listen to the words to painful to utter, to be patient with decisions so irrational and difficult to comprehend, and then we can remove those shards buried along our final common pathway and allow our last goodbye to be sweet.
I was thinking about dad this week as we are coming up on 5 years next week. It was a remarkable experience. My last visit with him was very profound...sad, but very sweet. I understand the guilt/duty all to well, but I like what you said about balance. I am also grateful to the doctors who took a chance on you. Even though the "quality of life" has had its ups and downs this year, the ups have been SO great. Mindy
On a related note, here is a delightful short video. You can be very proud of your dash, Kevin!
love, Aunt Renie
Your message brought back memories of Art's death.
Some people were in denial and could not listen. It became a block to honest communication.
He even continued chemo beyond its effectiveness, because he hadn't the energy to fight their refusal to accept his impending death.
But many were able to give him the gift of listening without judging. He was able to speak honestly of how best to spend whatever time remained for him. He also spoke of the journey, and his 'aha' moments!
These family & friends still speak of the precious talks they had with Art in his last days. The love that was shared was treasured on both sides!
What a wonderfully written post. My sister Brooke, (54) was diagnosed with AL Amy, with cardiac involvement in February of this year. She had SCT in May and is enjoying her CR....so far. I have been her primary CG during the DX and SCT. I am also singing the guilt song. I'm her sister, I'm healthy. She is the smarter more dedicated public servant. Brooke is a nurse...SHE was the caregiver. I live each day wondering why it wasn't me...
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