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Thursday, September 19, 2013

2B or Not To Be....


At the time of my diagnosis the cancer was present in two quadrants of my body; it was stage II. It had affected lymph nodes in both sides of my chest, my supra-clavicle region and possibly my neck. During the initial staging, an A or B distinction is also allotted. "A" signifies you are not yet symptomatic, "B" means you are experiencing symptoms of the disease and therefor it is  generally more advanced or aggressive and requires more treatment. I was a B. My cancer was stage IIB. I had cancer and I had symptoms. I was not in denial about these symptoms, I was not afraid to get myself to the doctor, I was not nonchalant about my health. I was concerned, I was proactive, and I was thorough.  Despite all this, it still took over two years to get a diagnosis. Two years that the cancer was growing inside me.  I experienced my first night-sweat in June of 2011. I remember it well, waking in a panic, waking my husband, drenched to the core, having to change the sheets- talking  about it with my neighbors the next morning as we gathered on the street, sipping our coffee and watching the kids play. In perhaps my over-sharing, I was reassured it was normal, many of my friends had night-sweats on occasion. And I was relieved until it happened again. This time, as any concerned mother of five with slightly hypochondriatic tendencies would do, I googled my symptoms on WebMd. I read the ten page list of possible causes, everything from "completely normal part of aging" to "Leprosy",  however the one that jumped out at me was Lymphoma. I shut down the computer and called my primary care physician. She examined me, was not concerned but ordered some tests to help relieve my anxiety. When everything came back normal, I was temporarily relived but as the night-sweats continued at random, so did my concern. I returned to my doctor who, at a loss, suggested it might be hormonal. I went to my OBGYN where I had more tests, then followed back for more tests. With still no answers I went to Endocrinologist, who specializes in tracking the function of all the bodily processes that contribute to sweating. I had several appointments and many tests, blood work, 24 hour fasting tests, and 24 hour urine tests. I checked back in with my primary doctor during this time and had a chest X-ray.  Everything came back "normal." Perhaps it was stress or anxiety I was told time and time again, I did have five kids, including three under 3 years old. Maybe I was stressed, and these sweats were my body's way of working it out? I thought I would tackle the stress, I hired a babysitter more often, worked out five days a week, took yoga classes and even enrolled in a course at MGH on "Utilizing the Relaxation Response." However, I knew my body, knew my mind, knew that something was not right so I pushed on, I got a second opinion from a Primary at a Boston Hospital, a third at a homeopathic practice. When nothing turned up, and still feeling something was not right, I returned to my primary, who at my urging finally sent me to a Hematologist/Oncologist. I thought if a Cancer Doctor says it is not indicative of anything and not to worry then I will I listen and move on, recognizing this is just an unusual, sometimes inconvenient symptom, but something I can definitely live with. I just couldn't live with the worry. Once again everything checked out fine. I thanked God that I did not have cancer and carried on with my life until I soon discovered a hard nodule in my neck. It was small and hard, but after a week when it did not go away, I went to my Doctor. She told me it was certainly not lymphoma and to follow up in a few months time. I went back for the follow-up and mentioned a cough which was waking me up at night. She attributed it to allergies and suggested a humidifier. She recommended yet another follow up and if the node was still present in three months then she would send me to an ENT for a biopsy. Well, like any concerned mother of five with slightly hypochondriatic tendencies, I did not want to wait three months for a biopsy so went ahead and made the appointment with the ENT on my own.  I told him of my symptoms, he examined me but did not find the lump concerning enough to warrant a biopsy. I returned in six weeks for a follow-up with the ENT and the nodule was still there but he was still not concerned so I tried not be either, after all I was feeling fine, working out five days a week, teaching dance classes, chasing around my kids and getting six hours of sleep if I was lucky. Could I do all this if I had cancer? The end of February I had my regular annual physical and was declared "the picture of health". Hard to fathom that at that time, the upper half of my body was filled with cancerous cells. After all those many trips to many different doctors it would only take one trip to the Emergency Room less than two months later, and one CT scan to discover what was hiding on the inside. Alone in hospital bed in the middle of the night I found out about the enlarged lymph nodes pushing on my lungs and heart. I had stage IIB cancer.
I choose not to think about what if it was found earlier?
I choose not to think of how it took two years and managed to reach stage IIB.
Instead I choose To Be.
To be in the moment.
To be happy.
To be positive.
To be forward thinking.
To be here everyday...



6 comments:

  1. As always, I am left speechless (or with writers block) every time I read one of your posts. How to come up with the right words and the right sentiment, when your posts make me feel so many emotions? I'm not sure there are words enough to express how you inspire and drive people who learn about your situation, to want to be just better at life - just all round better people.
    This post and your previous one in particular have amazed me and stayed with me. I've found myself trying to be more present, trying to follow your examples. I think that it takes a very special kind of person to react with the grace and fortitude that you demonstrate. The word "inspiration" just doesn't cut it. Thank you for managing to find the time and energy to share your story. You can be absolutely sure that there are many people benefiting from your words of wisdom, as well as sending much love and prayers out to you.

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    1. Thank you Clair! It is so wonderful to hear that...

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  2. Another amazing post, Amanda. I had no idea the diagnosis process was such a long one for you. I am so impressed that you are choosing not to linger on the what ifs. Keeping you in my prayers!

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    1. Thanks Kathy. I really appreciate the prayers! xo

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  3. Thank you for continuing to share your beautiful and powerful message of love, strength, and positivity with all of us. While I am surprised to hear about your lengthy path to a diagnosis, I am so impressed at how you continued to advocate for yourself and are looking on the bright side still. You are such a good example for all of us, and your children in particular. Know that I continue to hold you in my thoughts and prayers, and look forward to a positive update in a few weeks!
    Emily Moloney Smith

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  4. Lubin & Meyer! It may be a difficult diagnosis to make, but not impossible. Don't ever blame yourself.

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