After leaving Mayo Clinic yesterday, as I was walking to my car, I took a deep breath. I can't remember the last time I did that without being provoked by a stethoscope on my back listening to my lungs.
It was truly a breath of renewal. You see, my Mayo appt yesterday left me with, for the first time in a year, a sense of optimism and hope. The doctors believe that my M.S. can for this moment be classified as benign. Everyone in the cancer world that I work in, knows the word benign is one of the most beautiful words in the English language. And now that word has a meaning to my M.S. It is just as it sounds. The M.S. that I have is slow right now and the only better news I could have received was that it miraculously disappeared. I know that is what many people are praying for anyway...
It was relieving to hear that after a full year I really only have 1 brain lesion, 1 spine lesion and then 1 lesion that was on the optic nerve. This is truly excellent news. Typically M.S. patients have 5-10 new lesions on their brain at every MRI scan. Yes, treatment can help the process but it can't stop it so these lesions can pop up even without symptoms. I don't know if the latest brain lesion is linked to my recent short term memory loss but perhaps. It is however, something I can live with at this time.
I want to extend my absolute gratitude to the doctors at Mayo Clinic who took interest in my case and made time to fit me so quickly this month. I feel honored to have such exceptional care at my finger tips in Minnesota. Those of you who access the Mayo system, I hope you know what a gift you have in front of you. Whether it be outstanding research and life saving treatments or just exceptional brand awareness, I believe in the business of Mayo Clinic and the reputation they have built world-wide. It is humbling to receive such good news at my visit yesterday knowing full well that there were people in that very same office who were not receiving good news.
Friends, I am sitting here taking another deep breath and pinching myself because I just can't believe my good fortune. Yes I have M.S. that fact will live with me til there is a cure but I can live in hope that the disease will remain dormant in my body and cause little interference in my life.
What a great day.
Thursday, April 22, 2010
Monday, April 19, 2010
Circus
As a kid, I always loved the circus. The lights, the animals, the thrill of the trapeze and tight rope walkers... to sum it up, a circus has a lot going on in quick succession and lately I can relate.
After a surprising call from Mayo Clinic on Wednesday, April 7, I have become my own tour guide through their massive health facility. I have been there a total of three times in the last two weeks, logging about 24 hours worth of visits and waiting in those three days. Not to mention, logging over 300 miles in that short time. After a cluster of tests to identify any number of problems, all the tests except for one, came back fine. Basically the pain I had, the high blood pressure, headaches and vision trouble are not new problems with my body. The CAT scan, which by the way is in my opinion, the most accurate description of the inside of a human body without slicing it open, showed nothing. Some minor defects in the arteries to the kidneys but nothing that is affecting my kidneys so no concern there. A slight velocity issue with my heart ventrical but probably something I have always had and further more, of no concern to the doctors at Mayo.
Probably the most dishearting news of all was finding out that there was a new lesion on my brain. This is the first lesion I have had on my brain. Basically a lesion is a scar that is left behind after the body eats away at the myelin or protective coating around the nerve. The good thing about this lesion is that I haven't noticed any change in my overall well being despite its development. The neurologist was pleasant and had excellent bedside manner, something I demand in my care. He said it was good that I was feeling fine and seemed to have no issues relating to the symptoms of MS. He questioned my medications and whether or not they were necessary. He stated that many MS drug benefits have been "overblown." His honesty made me trust him even more. I felt like for once, I was listening to someone who was truly concerned for my well being and not just prescribing the latest drug available. The side effects of my MS drug could be causing the high blood pressure so they want to see me again... They called today and now I am going there on Wed. for a visit with one of their MS specialist. It is amazing to me that we have drugs available to us that can cure one thing and cause new things to go wrong... Sometimes I wonder if just letting the disease run its course, is a better option that risking heart and kidney complications from drug side effects.
I am not complaining. Know that. I am so grateful that my care is now in the hands of the Mayo Clinic doctors. I am confident that this is the right place for me right now. I am tired of feeling like I am part of a never ending circus of medical appointments, bills, and balancing the home too.
Exhaustion from life's stresses are wearing me down. Thank goodness I have a beautiful family to come home too every night. No matter what this disease does to my body, it can't rip me of the joy I feel every time I am with the ones I love.
After a surprising call from Mayo Clinic on Wednesday, April 7, I have become my own tour guide through their massive health facility. I have been there a total of three times in the last two weeks, logging about 24 hours worth of visits and waiting in those three days. Not to mention, logging over 300 miles in that short time. After a cluster of tests to identify any number of problems, all the tests except for one, came back fine. Basically the pain I had, the high blood pressure, headaches and vision trouble are not new problems with my body. The CAT scan, which by the way is in my opinion, the most accurate description of the inside of a human body without slicing it open, showed nothing. Some minor defects in the arteries to the kidneys but nothing that is affecting my kidneys so no concern there. A slight velocity issue with my heart ventrical but probably something I have always had and further more, of no concern to the doctors at Mayo.
Probably the most dishearting news of all was finding out that there was a new lesion on my brain. This is the first lesion I have had on my brain. Basically a lesion is a scar that is left behind after the body eats away at the myelin or protective coating around the nerve. The good thing about this lesion is that I haven't noticed any change in my overall well being despite its development. The neurologist was pleasant and had excellent bedside manner, something I demand in my care. He said it was good that I was feeling fine and seemed to have no issues relating to the symptoms of MS. He questioned my medications and whether or not they were necessary. He stated that many MS drug benefits have been "overblown." His honesty made me trust him even more. I felt like for once, I was listening to someone who was truly concerned for my well being and not just prescribing the latest drug available. The side effects of my MS drug could be causing the high blood pressure so they want to see me again... They called today and now I am going there on Wed. for a visit with one of their MS specialist. It is amazing to me that we have drugs available to us that can cure one thing and cause new things to go wrong... Sometimes I wonder if just letting the disease run its course, is a better option that risking heart and kidney complications from drug side effects.
I am not complaining. Know that. I am so grateful that my care is now in the hands of the Mayo Clinic doctors. I am confident that this is the right place for me right now. I am tired of feeling like I am part of a never ending circus of medical appointments, bills, and balancing the home too.
Exhaustion from life's stresses are wearing me down. Thank goodness I have a beautiful family to come home too every night. No matter what this disease does to my body, it can't rip me of the joy I feel every time I am with the ones I love.
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