Moments that Matter
Editor's note: This is a continuing monthly series featuring letters written to BIDMC staff by a patient, patient's family or other staff members. If you receive a letter and would like to share it, please send Morag MacLachlan an e-mail at mmaclach@bidmc.harvard.edu. The following letter is reprinted with the author and patient's permission. (The letters have been edited for length)
Dear BIDMC,
I am the luckiest woman alive! And I owe that to the staff of the Beth Israel Deaconess Medical Center.
This past winter I was feeling very tired in the middle of the day and could not sleep well at night. I thought I was beginning menopause. My husband insisted that I find a new doctor rather than return to my regular doctor who had a history of brushing off my complaints. My husband's doctor, Ronald Katz, referred me to Dr. Alla Tandetnik of Pastor Medical Group. At my first visit I told her about all of my symptoms. She explained the difference between peri-menopause and menopause and various treatments we could explore that might help. Then she examined me and found a cyst in my uterus. This cyst was discovered last year by a nurse practitioner, but she did not think it was big enough to worry about. Dr. Tandetnik sent me for an ultrasound. Soon after, she called me and said that they found a mass on my kidney. My journey into the world of cancer and its treatment began.
Using computer images, Dr. William DeWolf carefully explained to me and my husband where the tumor was and what would be the best way to remove it. He spent a great deal of time with us, addressing all of our questions and concerns. He was direct, but very sensitive. I felt good about him being my surgeon. By the time I went in for the surgery, I was confident that everything would go well. And, it did. When I opened my eyes, Dr. DeWolf was smiling down at me, reassuring me that I was okay and that the surgery was successful. Although I don't remember a thing, his surgical team told me I did a great job; they were very supportive and upbeat.
My recovery at BIDMC was the best experience a hospital stay could possibly be. My husband and I were so impressed with the staff. Everyday Dr. DeWolf and his assistant came to visit in addition to the surgery team and the pain team. I had many nurses and nurses' assistants during my stay and they were each wonderful. They made me feel like I was their only patient and that their number one objective was to make me well. Diane, who was my age, nurtured me like she was my mother. She always engaged me in conversation and could make me laugh so hard. "Sunshine," was a nickname I gave one of the nurses because she made a very dreary day sunny for me. I was feeling down and she helped me work through all of my concerns. After helping me bathe and change, she brought me a cup of tea. She completely changed my mood and I had a wonderful day. The lovely lady that took my blood every morning was also kind and caring. She was very gentle and always asked how I felt. And, overall, the hospital floor always seemed to be calm and in control. One day there was even a woman playing a harp! I never felt stressed or nervous; I knew I was in good hands.
Since my experience, I have transferred both of my daughters to Dr. Tandetnik's practice. I cannot say enough about your great staff and the Beth Israel Deaconess Medical Center. I feel very privileged to be under your care.
Sincerely,
Kelley Carroll
July 25, 2009
The following letter to BIDMC staff is from the blog of "e-Patient Dave" deBronkart. He was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer). His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue. He received treatment at BIDMC.
On Anniversary Day: Thanks to You Who Saved Me
Dear BIDMC,
July 23, 2011, is the fourth anniversary of my last dose of HDIL-2 (high dosage interleukin-2), the treatment that rapidly reversed the course of the cancer that was killing me. I haven't had a drop of treatment - and thus not a single side effect - since then. Nobody can predict the future, but this I know: I am well.
I believe in acknowledging those who make a difference, so here we go:
Thank you, Dr. David McDermott, my oncologist. When my ACOR.org kidney cancer peers listed the best docs to seek, you were on that list. And I was so glad I was already being steered toward you. Thank you for your excellence, for the work you did to get there (all the hours and years of study), for your dedication in seeking more and better treatments for other patients like me. I know most kidney cancer patients don't have as good an outcome as I did, and I imagine it's hard to work with so many who die.
Thank you too, for your gentle nature and willingness to answer my questions by email. I often tell people how I misunderstood "craniocaudal," scaring myself with a misunderstanding of the numbers I read, and when I apologized, you - tops in your field - replied, "I am happy to field your questions." Thank you for being a modern, participatory, super-smart doctor.
Thank you, Dr. Andrew Wagner, my urologist and surgeon, who removed my kidney (and yeah, I know, adrenal gland, but what the heck is that, anyway) in a 5½ hour laparoscopic operation. So often I hear what arrogant "cowboys" many surgeons are, but not you: soft-spoken and brilliant. I'm so glad you arrived at Beth Israel Deaconess less than a year before I needed you.
A man of fast hands, too: you'll recall that when I awoke from the surgery and looked around groggily, I saw you and my family, and said, "Mommy, he hurt me" and reached for my cane, to whack you. Thanks for being quick and getting it before I did.
And those hands - thanks for being so good you could do the surgery without a robot. Most people I talk to have heard so much robot marketing that they don't know your skills even exist. (I know you use the machine for some surgery.)
I'm told laparoscopic was important, in my case, because I recovered months sooner than if I'd had the conventional "open" surgery. I know a guy whose surgeon can't do laparoscopic and didn't even tell him that option exists, so he unnecessarily endured the harsher method. As you know, I strongly believe patients should be informed of all their options, even options that require going somewhere else.
Thank you also for being such a perfectionist, so compelled to get it really right, that you corrected me - it wasn't 5½ hours. (To my family I was gone 5½ hours, but you wrote: "Being the stickler that I am I went back to see just how long the procedure was on our system: you were in the operating room for a total of 5 hours but the actual surgery time was 4 hours 15 minutes.")
Thank you, Dr. Megan Anderson, my orthopedist, who monitored my femur with that big metastasis (ow), tried to keep it from breaking, and, when it did, scooped out all the cancer cells (how is that possible???) and glued and screwed it all together. I know it wasn't easy, and we had to go back in for a second try, but today I'm a happy hoppin' 61-year-old whose legs work better than many I know who never had cancer.
It was fun riding with you in the Reason To Ride bike fundraiser - I show that picture of us in most of my speeches.
It's no surprise to me that your peers voted you "Best in Boston" in that magazine last year - or was it the year before?
Thank you, Dr. Danny Sands, my legendary primary care physician, for so many reasons:
• co-author of the world's first guidelines for doctor-patient email (1997)
• co-creator of the PatientSite patient portal (1999) which I used so often
• long-time friend of Doc Tom Ferguson (founder of the e-patient movement)
• my PCP starting in 2003, then again when I returned to Boston in 2006 - just in time for the adventure
• for practicing shared decision making with me, when we discussed whether to do a PSA test. ("There's no clear recommendation," you said, and explained the options and trade-offs so I could choose.)
• for being the doctor in "My doctor prescribed ACOR," referring me to that expert patient community
• co-founder of the Society for Participatory Medicine, and my co-chair for its first two years, and its President to this day
• the first to invite me to speak publicly about my case - with you in October 2008 and February 2009, then on my own, and again at Grand Rounds (BIDMC 2009) and the IHI Forum in 2010 and Copenhagen 2011. It is an honor to share the stage with you. I steal many of your slides, and many of your thoughts and words.
I say you are a great leader, and a primary source of the new world that's beginning to emerge.
Thank you, Virginia Seery, NP, head of the IL-2 program at Beth Israel Deaconess. I remember, day after day when I was in treatment, seeing you show up at the foot of my bed. Heaven knows how many patients were on your mind, but when you and your colleagues showed up with me, you were present. My clear experience was that in that moment, there was no other patient in the world but me. This is an aspect of medicine that we hear too little about, but to me it meant the world: a desperately sick person benefits from the sense that a genius knows, cares, and is on the case. Bless you and all the work you did to achieve all those skills.
I know you and the IL-2 team saved my life more than once. The published data most doctors see tells them 4 percent of all IL-2 patients die from the side effects, and this sometimes keeps them from suggesting IL-2. They don't know how good your team is. You stopped my doses more than once, e.g. when my BP dropped to 50/30. You managed my case successfully, and I know you've lost hardly any patients in the past decade. This is awesome professional competence. Thank you, and please share this with your team.
Thank you, Kendra Bradley, Gretchen Chambers McGrath and Meeyoung Lee, the research coordinators for the clinical trial I was in. Every one of you has been a rock of stability, an anchor … the metaphors fail me. But your ability to communicate with me, answer my questions, help me understand what I could, and have confidence when I couldn't, was a cornerstone of my treatment experience.
Kendra, especially, you were the one who knew and handled me when I was in the crucible. Your wisdom as a caregiver was so deeply appreciated. I don't know how much of that is taught in school, but the skills you acquired afterward served me well. I remember when you said you detected early on that I had an appetite for a lot of information, though a lot of patients don't. You said you picked this up when you worked in pediatric oncology, where a lot of patients can't directly say what they prefer. I want to say "Mwah," but I don't know if that's appropriate.
You were also the one who first pointed out that parents are more willing to speak up and advocate for their sick kids than for themselves. This led to my "mama lion" hypothesis - that as we work to change the culture of healthcare, perhaps our greatest access point will be in pediatrics, where adults are more empowered and few people would deny them the right to engage in care.
Speaking of lions, thanks to the nurses - of all levels - who deliver the lion's share of care on the front lines. I can't remember all your names but I sure remember the care, the competence, how you listened to us. In my unit at Beth Israel Deaconess I felt extremely well cared for and cared about.
Thanks to the people who developed IL-2 and have done the many years of research into its use. As I understand, it was developed at Chiron Corporation, was sold to Novartis, and is now at Prometheus Labs. Who are those scientists?? Whoever you are, you who pioneered that research in the 1990s and you who have developed new protocols, you too contributed to saving my life.
I myself was great at science in high school but sorta flopped at it in college - perhaps because, um, I kinda didn't do the course work, which you did do. So you learned and got good at it and yes, that let you save lives. My mom, for one, is grateful.