I found this video from my good friend and DEN GURU Tim Childers on Facebook. It popped into my wall feed at a time when I really needed a good laugh. I love this video so much it remains on my bookmark toolbar, a close click away. Much of what he says we can all relate to, and in the doing, find that deep and continuous laugh we all need. Brian Regan's "Doctor" segment resonates, especially in the pressure segment. It was right after my bone marrow test that I found this clip, and as anyone who had a bone marrow procedure knows, I needed this laugh. You might want to check out his other videos as well. He's one funny guy. Food for laughs.
My husband always demands that I cut to the chase when telling him something. He wants the endgame, then the story. Here's this post's purpose:
Medical History + Medical Jacket = First Class Health Treatment Now for the story.
Some things just do not need a time of year to be in season. Still, this 1934 Coots and Gillespie carol, Santa Claus is Coming to Town evokes childhood memories. I once believed that Santa Claus could (and did, but only one year) bring coal to little girls who did not listen to their parents. In that vein of yesteryear, I offer to anyone who is a physician's patient, whether you have cancer or the common cold, to make a list, check it twice (at least), and update it regularly (once every 1-2 months).
The list I recommend creating is a medical resume`, better known as your Medical History. This is the first item that should meet and greet your attending physician, whether your appointment concerns an annual physical, an occasional illness, or a critical care issue. You do not offer this history every time you visit your physician, just the first time you make an appointment with a new doctor or return to a favorite practitioner who never received one. I update my history as needed, but usually not more than once every few years, unless something dramatic occurs.
For me, the drama was my cancer diagnosis, and that prompted me to some serious revision because I added a fleet of physicians and specialists. Since they all collaborate with one another, it makes sense to provide them with your personal medical history (and it saves so much labor intensiveness in form filling for a first visit; just hand them your form instead).
There are many online resources for how to complete a personal medical history form or how to keep a personal medical record file. What I did, however, is pattern mine after the forms I was asked to fill, and by examining how my physicians and surgeons created their own. I knew this formula because I am copied in on all my doctors' individual and collective correspondence, meaning what they create on their small digital recorders for their records, as well as inter-doctor correspondence. I also have a full Medical Jacket, or copies of my scans, x-rays, and medical tests. In a word, everything. I will admit that it took me several days to get to a finished product I liked. Then I checked it, and twice I found errors (typos, omissions that were critical). So I recommend that you finish your history, then step away from it. Proofread it several days later, and then print it. I put the final version on card stock so that my doctors could easily access my information in a thick folder. Here's what I created, and I can tell you that my physicians were really impressed with my thoroughness.
If and/or when you have your next appointment, especially if you are dealing with cancer or any other pernicious illness that requires constant critical care, arrive with your medical history and your medical jacket. I can guarantee you will have a much better visit and better treatment because you took responsibility for your own health status. And you made it easier for your physicians and surgeons to treat you. All of that equals first class treatment, and that is always my endgame.
"Think of it as a disease, like diabetes, that you live with, die with, but not die of." Thus spoke Sunita Nasta, MD, Non-/Hodgkins Oncology Specialist, and my newest physician caregiver. Never was a diagnosis better received. In short, I got a life sentence, a long one (that's me on the left, walking the white llama). And it was a long time coming. At various times, I amped up my conversations with God and evaluated my life, dispassionately, to learn that by my standards I had lived well. Now the challenge might become dying well. Was I up to it.
And that's where the hand of God, the work of faith and prayer, serendipitous intervention, or just old-fashioned luck plays its hand. Call it as you see it, but for me, it was a Padre Pio miracle. Non-Hodgkins Lymphoma, Grade 2, Stage 3A.
When was the last time a physician asked you how you prefer to learn? Beginning with Tahamtan Ahmadi, MD, Oncolocy Fellow (past residency and now specializing), I was given the preference of medical discovery in my learning style. As a teacher, I totally understand the value of pitching to a learning modality, but was surprised to find that level of delivery in the medical field. Bravo!
"Would you like me to deliver my spiel, or would you prefer to ask me your questions first"? What a tag team! Being given choices counts with me, since I have grown up surrounded by specialty physicians in my neighborhood. Finding that same compasssion and concern, especially at a large facility in a larger city exceeded my expectations as Dr. Nasta greeted my husband and me as treatment sharers. Despite the expansiveness of the facility, I felt like I had returned to my childhood roots, where you could go next door and have tea, treatment, wonderful conversations, and confidence in your returning wellness.
Does your treatment facility have state-of-the art equipment? Why be referred to a cancer center that has the best diagnostic and treatment equipment when you can begin beating back cancer from the beginning by betting with the best.
What awards and accolades has your treatment center achieved? Is it wrong to want the best. Cancer care is a competitive industry and each strong facility has a piece of the market share. So, for me it comes down to ratings, rankings, research, and survivorship. And the doctors.
Are your doctors at the top of their specialty? Don't be a passenger in your life; be the bulldozer. Make your choices carefully, and then make sure the fit is good. Mine are, and in working toward longevity, that means everything.
Is your cancer center connected to a University Medical School? Field research and clinical trials are important to my decision-making. If need be, I will be a risk-taker. When life is the endgame, I want to be on the cutting edge, before the edge is cut. And should all else fail, I want to be positioned in a place that can look at advanced medicine alternatives.
Like so many people, my father was not so lucky. He did not get a life sentence, but we did manage to give him two years he might not have lived had I not done research at UPenn's biomedical library. Throughout my life, my father was my anchor, a strict but loving parent, someone I would forever miss. As I watched his life wane, I knew that should my time come when I would have to beat cancer back, I would learn from the choices he did not make.
The University of Pennsylvania has a long and well-established history as forerunners and innovators in medical science at all levels or medical care. William Pepper, Jr., MD (1843-1898), the third in the family line of physicians in the early history of the hospital, spearheaded major early development and expansion. A Laboratory of Hygiene, the University Library, University Museum, William Pepper Laboratory of Clinical Medicine, Veterinary School, Wharton School of Business and Commerce, School of Nursing, ad Wistar Institute of Anatomy and Biology, as well as several expansions of the hospital occurred under his spirited creation.
A milestone in radiology, including the world's first X-ray, produced here in 1890, as well as a leader in radiation oncology, cancer care and cures, and nursing education and excellence, the University of Pennsylvania Medical Health System is simply the best. That's why I am HERE. I want the best facility, the best physicians, the best equipment, the best treatment! It is critical in your diagnosis, treatment, and cancer care to make informed choices. Decide criteria for what constitutes best for you. That could include simply wanting the best diagnostician, surgeon, hematologist, radiologist, oncologist, but best includes a wide array of other emotional factors. My comfort zone one year ago centered in a small country hospital with the best compassionate care. Many physicians also practiced at a larger city hospital, but dedicated a smaller practice to my area of rural America, so I had the best of both worlds. Best may be a collaborative doctor who engages you in decision-marking (always my choice), or you may prefer a medical professional who directs your treatment with minimal input from you, perhaps making your journey just a bit less stressful. Best is individual, relative, and always your perception, so bet on your best.
A first post is always a hard call, but I wanted to summarize my experience before I explore how I will beat back cancer, one strategy at a time, one day at a time. Please stay in touch; I hope to include guest bloggers and welcome posting your experiences. Cancer touches every family's life, and in this blog I hope we can share our stories and find a common place where together we can begin (and continue) beating back cancer.
Very few things in life are truly perfect, but the Fourth of July, 2009, was all that and more.
But like the fireworks that mark Independence Day, my life became a series of ground-level firework markers that reverberated for eight months, before burning themselves out. On July 5, my story began as I entered the hospital with a dangerous fever spike and coughing with pyrotechnic output remarkably like Mons Vesuvius. A CAT Scan and several x-rays later, I was released, only to reprise the visit in three days. That's when the real fireworks erupted. Five white lab coats entered to inform me that beyond pneumonia in both lungs, I should "get my life in order...arrange for a living will...and did I need counseling." White Lab Coats have a way speaking beyond the person, in an impersonal objectification whose subtext is your clock is ticking (did I mention I was alone).
A bronchoscopy, more tests than April's PSSAs, and a four-day hospital stay that was my best experience with compassionate care and cooking, and I was released with a life sentence, aka, nothing significantly wrong. My summer was iconic and idyllic; I looked out on 185 acres, my girls, and a wonderful life. For the duration of time from then to now, I was monitored. CAT Scans, PET Scans, and more hematology-sticking repeated at regular intervals led to a mediastinoscopy because my lymph nodes had grown. Subsequent to a diagnosis of Non-Hodgkin's Follicular Lymphona, Grade 2, a bone marrow test was administered as part of the staging for determining treatment protocols (would prefer surgery to another bone marrow test). The following video of a bone marrow biopsy is graphic, perhaps not for the fainthearted. If the video above is too graphic, try this animation.
Throughout my journey, I gained a newly-found respect for many aspects of my experience; the treatments and the people who administer them, but most of all, I respect bone marrow donors. Truly, I am not certain I could be that brave again.
My next step is a second opinion appointment at UPenn Hospital, and then a conference with my oncologist to determine appropriate treatment as a result of my staging tests. Since childhood, I have been an optimist, determined to live my life fully, on my own terms, accepting the responsibility for my informed decisions. Nothing has changed. I will survive, I will endure, and I will begin beating back cancer. The fight has already begun.
I found this video from my good friend and DEN GURU Tim Childers on Facebook. It popped into my wall feed at a time when I really needed a good laugh. I love this video so much it remains on my bookmark toolbar, a close click away. Much of what he says we can all relate to, and in the doing, find that deep and continuous laugh we all need. Brian Regan's "Doctor" segment resonates, especially in the pressure segment. It was right after my bone marrow test that I found this clip, and as anyone who had a bone marrow procedure knows, I needed this laugh. You might want to check out his other videos as well. He's one funny guy. Food for laughs.
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