AAHPM Winter Quarterly 2011 : Page 20

THE ART OF CARING Let Us Choose Not to Be Awkward Ben-Tzion Karsh, PhD Editor’s note. This essay was shared in an e-mail to Dr. Karsh’s friends and colleagues after he learned that his cancer had returned. In his message, he shares honest perspectives about his situation and what people could do to help him—advice of which may be useful for anyone who communicates with terminally ill patients. First published in the Israeli newspaper, Haaretz , on September 12, 2011, it is reprinted here with permission. Dear Family and Friends, My cancer has returned, and it has been labeled incur-able. Nobody knows how much longer I have. Right now, I actually feel normal. During the days I feel fine; I antici-pate doing work, walking, relaxing, and enjoying time with family and friends—probably in reverse order. Since learning of this news last Wednesday I’ve been out to dinner, had company over for dinner, and enjoyed walks and time with the family. I know people who have lived years and surprised everyone by returning to work after being told worse news. I know that most are not so lucky. Time will tell. What is important is to make the most of this time. I am still learning to cope and deal with this news, but with the help of wonderful family and friends, the learning is occurring. I was never in denial, am long past anger, and have never asked nor will I ever won-der “Why me?” I still have plenty of fight in me. I have a treatment plan, and I will go from there. If you are wondering how this could be the case when only 1 month earlier I had good PET scan news, the answer is that the PET scan is only relevant to that day. On July 15 I did not have cancer. Unfortunately, that meant nothing for July 16 or any other date beyond. Scans are a lot like stocks in that way. My wonderful gastrointestinal (GI) oncologist quickly contacted all of the other experts in my cancer—ampul-lary cancer—around the United States, as well as GI oncologists at all major US cancer centers to find out if they knew of trials or even anecdotal evidence from which I might benefit. Everyone got back to her within 72 hours, and all agreed that her plan for me was the way to go, which involves a combination of two chemo agents. No one had heard of any trials, except at MD Anderson Cancer Center in Texas. However, the trial there is in its early phases, and therefore there is no evidence that it might help. The plan my GI oncologist created for me has been helpful for some. Clearly, the best decision is to fol-low the evidence we have at this time. My oncologist will stay in close contact with the MD Anderson investigators to track how their trials are going. If anything comes up that I can benefit from, we can change my plan at that time. For now, the country’s best experts all agree with her plan. We also have a few backup plans in case the first one does not work. I’m sure you are wondering what to say to such news. I don’t have any definitive answers, but let me try to help. I know you are sorry; I am, too. If you want to express how you feel, that is of course welcome. I’m learning to do that now, too. If you don’t want to do that, that is also okay. If you would like to get together, I would welcome that. If we get together or chat on the phone, please just be as normal as possible. Again, I am fine right now. We will both know that I am on the clock (hopefully for a long time), and that makes things weird and awkward. Try to be as normal as possible without thinking you have to hide how you feel. Do not be scared to say how you feel or ask me questions about my condition, my treatments, or how I’m doing. I’m comfortable talking about them. Feel free to ask to go out for a walk, lunch, or dinner. If I’m feeling fine and it works for the family, I’d love to. Again, we both know this is awkward, but we can choose to either let that get in the way or not; let’s choose not. I promise to do my part and be as normal as I can be. What might help the most is to remember that I’m fine at the moment. You are not saying your “last goodbyes” for as long as I can help it. When such a time does come, I’m sure you all will know. Here are some things to not ask or say to me: 1. Do not ask me how much time I have left. 2. I am not asking the question “Why me?” so please do not try to answer it. In other words, do not say or imply Dr. Karsh (right), with his wife and two children (Photo by Anya Wait. Used with permission.)

THE ART OF CARING

Ben-Tzion Karsh

Let Us Choose Not to Be Awkward Editor’s note. This essay was shared in an e-mail to Dr. Karsh’s friends and colleagues after he learned that his cancer had returned. In his message, he shares honest perspectives about his situation and what people could do to help him—advice of which may be useful for anyone who communicates with terminally ill patients. First published in the Israeli newspaper, Haaretz, on September 12, 2011, it is reprinted here with permission. Dear Family and Friends, My cancer has returned, and it has been labeled incurable. Nobody knows how much longer I have. Right now, I actually feel normal. During the days I feel fine; I anticipate doing work, walking, relaxing, and enjoying time with family and friends—probably in reverse order. Since learning of this news last Wednesday I’ve been out to dinner, had company over for dinner, and enjoyed walks and time with the family. I know people who have lived years and surprised everyone by returning to work after being told worse news. I know that most are not so lucky. Time will tell. What is important is to make the most of this time. I am still learning to cope and deal with this news, but with the help of wonderful family and friends, the learning is occurring. I was never in denial, am long past anger, and have never asked nor will I ever wonder “Why me?” I still have plenty of fight in me. I have a treatment plan, and I will go from there. If you are wondering how this could be the case when only 1 month earlier I had good PET scan news, the answer is that the PET scan is only relevant to that day. On July 15 I did not have cancer. Unfortunately, that meant nothing for July 16 or any other date beyond. Scans are a lot like stocks in that way. My wonderful gastrointestinal (GI) oncologist quickly contacted all of the other experts in my cancer—ampullary cancer—around the United States, as well as GI oncologists at all major US cancer centers to find out if they knew of trials or even anecdotal evidence from which I might benefit. Everyone got back to her within 72 hours, and all agreed that her plan for me was the way to go, which involves a combination of two chemo agents. No one had heard of any trials, except at MD Anderson Cancer Center in Texas. However, the trial there is in its early phases, and therefore there is no evidence that it might help. The plan my GI oncologist created for me has been helpful for some. Clearly, the best decision is to follow the evidence we have at this time. My oncologist will stay in close contact with the MD Anderson investigators to track how their trials are going. If anything comes up that I can benefit from, we can change my plan at that time. For now, the country’s best experts all agree with her plan. We also have a few backup plans in case the first one does not work. I’m sure you are wondering what to say to such news. I don’t have any definitive answers, but let me try to help. I know you are sorry; I am, too. If you want to express how you feel, that is of course welcome. I’m learning to do that now, too. If you don’t want to do that, that is also okay. If you would like to get together, I would welcome that. If we get together or chat on the phone, please just be as normal as possible. Again, I am fine right now. We will both know that I am on the clock (hopefully for a long time), and that makes things weird and awkward. Try to be as normal as possible without thinking you have to hide how you feel. Do not be scared to say how you feel or ask me questions about my condition, my treatments, or how I’m doing. I’m comfortable talking about them. Feel free to ask to go out for a walk, lunch, or dinner. If I’m feeling fine and it works for the family, I’d love to. Again, we both know this is awkward, but we can choose to either let that get in the way or not; let’s choose not. I promise to do my part and be as normal as I can be. What might help the most is to remember that I’m fine at the moment. You are not saying your “last goodbyes” for as long as I can help it. When such a time does come, I’m sure you all will know. Here are some things to not ask or say to me: 1. Do not ask me how much time I have left. 2. I am not asking the question “Why me?” so please do not try to answer it. In other words, do not say or imply to me that my situation was somehow part of a plan, that God works in mysterious ways, or anything that suggests I should somehow be okay with this situation because it was planned, ordained, or decided. In short, do not try to make me feel good or okay with the situation. It is not good or okay, but I am learning how to accept it, cope with it, and fight on against it. My goal is simply to make the most of the time I do have. There is always the question of “What can I do?” If you follow the ideas above, you’ll be doing plenty. If there are people you think might want know this news, feel free to share the news. Most importantly, remember that although this is awful beyond words, it is not, as far as I know, imminent. What you can do is help me not to have stresses and be as normal as you can. When we do chat or get together, don’t feel that it has to be all about me. Share with me what is new with you, what you are working on, how projects are going, and how the family is doing. Let’s choose to put awkward aside as much as we can. Finally, in case you were so inclined, please do not call me as soon as you are done reading this. It takes time to digest this news, so please take time. Even if that will not help you, it will help me.

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