When I was diagnosed with AML Leukemia on September 3, 2008 you could say my life took a dramatic turn. Immediately you might think "oh yea...a turn for the worse!" Well, you would be right...at least at that specific moment in time. Cancer runs rampant in my family. My Grandmother and her three siblings all died from different kinds of cancer and if that wasn't enough, my Mom had recently been diagnosed with lung cancer. Yep, a life-long smoker...and she was still smoking throughout treatments...but that's another story.
That fateful Day got me thinking "How am I going to survive this??" Well, over the course of about a year, I came up with a recipe of sorts on how to create a Cancer Survivor. Just as if you were baking a batch of chocolate chip cookies, if you leave just ONE ingredient out...your once desirable end product is kaput. That's how I believe it is with cancer survivorship. Just leave one ingredient out...and well, you just not might make it to your 85th birthday. So, over the course of the next few weeks I'll let you in on my "recipe."
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Ingredient #1: A Great Medical TEAM
Way back upon my initial diagnosis, I was in tears about just hearing the news. My Mom had called on my cell phone to ask how my appointment went. Thank goodness for caller ID, right? I forced the cell into my husbands' hands..."I just can't talk to her right now," I said. When he hung up the nurse had already made arrangements for me to head out immediately to the Mayo Clinic in Rochester, MN. Ok...well, I had to immediately head to my local hospital in North Dakota to be stabilized first...then off to Mayo. We were thrilled! Aren't they the best in the nation? Yea...right!
Fast forward to September 5th (coincidentally our son Colt's 14th birthday). As I was getting a blood transfusion, yet again...the nurse came in and said we would be leaving for Omaha, NE sometime within a few hours. WHAT? I thought I was going to Mayo Clinic!! Well, turns out that Mayo was not on our insurance company's list of providers...so University of Nebraska Medical Center it would be. Initially we were disappointed, but we had lived in Omaha before - actually it was my husband's first duty station upon his Air Force enlistment. So OK we thought...at least we'll have a few people in town that we'd know.
From the moment we arrived at UNMC, our hopes lifted! 7th floor OSHU was staffed with especially caring nurses, welcoming PAs, and a team of Oncologists that could not be beat. No where, no time, no place. The first doctor we met was my Oncologist, Dr. Maness, and she explained some basic things for us. How treatments would work, the possibility of a bone marrow donor, etc. The next day on rounds though....no Dr. Maness. The next day...nope, we didn't see her again that day either. "What gives?" we thought. Well, turns out their practice is a Team effort. Several oncologists all meet together to discuss each patient on an individual basis. They come up with a plan tailored especially to each individual patient based patient history, results of DNA and other tests, aggressiveness of the disease...and the list goes on. All in all, we didn't see Dr. Maness very much on rounds. But...each and every oncologist on the team was absolutely amazing, caring, informative, and willing to spend as much time as needed with us answering questions (some in duplicate) to help us understand each and every step along the way. By far the best "on the scene" staff members were the nurses and PAs...again, always taking time to listen, let me cry on their shoulder, exchange stories of our kids and lives, and so very much more. Some even follow me to this day on my www.CaringBridge.org page. They truly became part of our family. So much so that I did go through a period of "separation" from them when my inpatient days were over....but that is for another time.
OK - so I've rambled on a bit. But here's the jist of it all...find yourself a great medical TEAM. Not just a great oncologist...but a full team of specialists who individualize your treatment. Visit different hospitals and see how their system works. If you're not comfortable with your initial oncology referral, listen to your heart and go somewhere else. After all, you are your own best doctor...Ask questions, do research, get 2nd opinions, but above all...be comfortable with who is on your team.
One thing I will always remember from treatments and my favorite PA, Paula...is what she said to me one day "We're in it for the cure."
That's what your team should be saying about you!
Next time, I'll talk about Ingredient #2....nope, sorry...not giving it way that easily!
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