The Roller Coaster Chronicles: An open letter to cancer doctors everywhere
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Dear Doctor,
Here we are, you and me, our lives connected by cancer. My cancer. Under the circumstances, I’m really glad to have you in my life, and I want our relationship to be very, very long and very, very good, but since I can’t find a manual on how to build our relationship, I’m guessing that, like any good one, it has to start with trust.Â
But trust takes time, which we don’t have, so I have some things to ask and say.
First, just what am I trusting in you? That you’re brilliant, cool under pressure, experienced, knowledgable and up-to-date on the latest miracles of modern science for my type of cancer? That you won’t be too proud to call in colleagues or send me to them if you get stumped or run out of ideas? That you’ll always be honest with me no matter how hard it is for you or me? That you’ll help me set realistic expectations without ever stealing my hope? That you’ll be my strength if I’m too weak to be strong? That you won’t give up on me if the going gets rough and it looks like I won’t be one of your success stories?
Do you understand that it’s hard enough to put my trust in you, but even harder to put blind faith in the people I can’t see but on whom you rely? Like the pathologists who look at tiny pieces of me or the radiologists who interpret pictures of my innards. You may know their credentials, but I don't.
I get that you went to medical school to learn how to identify and treat disease, not to listen to me blather on about how cancer is more than a physical problem. That it’s really personal. That it sweeps us patients and our families into a tempest of confusion, fear, frustration, vulnerability and isolation from the healthy world. I’ll try very hard to check those emotions at the door when you and I visit, but if they creep into the examining room, is it too much to ask you to recognize that I’m not just a collection of cells that needs to be fixed while you work to fix my wayward cells?
And Doc, surely you know that your sophisticated equipment can’t see the parts of me that make me who I am. And I am not my cancer. No machine can identify the parts that make me love and laugh. And none can calculate how very afraid I am. Of what lies ahead. Of dying. Of pain. Of medical procedures. And of becoming a number in a bureaucracy where no one will care whether I end up running a marathon or being turned over in a bed like a piece of meat on a rotisserie. Could you occasionally share my fear and shore up my hope?
Doc, I’ve tried to put myself in your shoes, but I can’t imagine how, day in and day out, you see humanity at its weakest and still find the strength to help us. I’m just glad that you can. And I know I need much more from you than you need from me, but I’ll do anything to help you help me, if only you can squeeze out a little time to teach me how to be a good cancer patient in addition to everything else that I ask of you.
Neither you nor I can predict the future, Doc, and I don’t expect you to do more than is humanly possible. But may I trust you to treat my future as if it were your very own?
Respectfully,
Your Patient
Betsy de Parry is the author of The Roller Coaster Chroncles and host of a series of webcasts about cancer. Find her on Facebook or email her.
Comments
JAC
Wed, Oct 13, 2010 : 10:21 a.m.
Thank you for the reminder that you are more than a diagnosis. You are a person with fears, pain, and uncertaintity. I am a Physician Assistant in Hematology/Oncology and I often remind myself that we are given incredible trust by a vulnerable population. I often find myself in a difficult position when patients ask me about their life expectantcy. We look at numbers and statistics but I never know if that person in front of me is going to be the one that defies the odds. I hope and pray they will. I love to tell patients about the one patient we had with metastatic colon cancer who we treated once and she got so sick she almost died. She went into hospice after that. Two years later we had to kick her out of hospice! She went on to receive more chemotherapy and lived another 2 years. Thank you for your insight.
Tim
Fri, Oct 8, 2010 : 9:59 a.m.
Great letter Betsy!! so very very true. I just came across one that was kind of similar from a Dr. point of view I can't figure if there's a way to do attachments on here so I'm sending it directly to you, but this is just such an accurate view in a cancer patients situation. Thank you Betsy!
Olan Owen Barnes
Thu, Oct 7, 2010 : 12:13 a.m.
I was diagnosed with liver cancer at the U of M and with my experience I must urge everyone always get a second opinion. I went to the Mayo Clinic and was put on a clinical study and it reduced the size of my tumor and had to go to Indiana for a liver transplant because I was refused at the U of M as I still did not fit their protocol. What can save you is not always close to home. BTW I was written up as a medical case study and am now 5 and a half years post diagnosis.
David Briegel
Tue, Oct 5, 2010 : 8:54 p.m.
Betsy, as my sister battles her cancer I really appreciate your perspective. I have always enjoyed your company and your insights into these issues. You are a joy! Keep up the good fight.
Betsy de Parry
Tue, Oct 5, 2010 : 9:43 a.m.
Dan, I completely agree that U-M's PsychOncology Program is invaluable. In fact, I'm interviewing Dr. Michelle Riba, its Director, for a webcast which will air on 10/28. See: http://www.lymphomahelp.org/audio.htm
Dan Meisler
Tue, Oct 5, 2010 : 8:09 a.m.
If you haven't heard of it yet, U of M Cancer Center has a great counseling program that helped me with some of these issues. See http://www.cancer.med.umich.edu/cancertreat/treatment/psych_oncology/psych_clinic.shtml