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Many Chapters of Survivorship / by Kasey Long


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Many Chapters of Survivorship

March 9th, 2012 - by Katie Brown

by Kasey Long

http://blog.lungevity.org/2012/03/09/ma ... vivorship/

Many people, including some friends and family, think my cancer journey began the day I was diagnosed with advanced stage lung cancer.

In actuality, it began some 40 years ago when my dear, sweet mother was diagnosed with colon cancer. We survived that, only to be dealt her lung cancer diagnosis not many years later. Following close on the heels of her cancer was my dad’s lymphoma diagnosis. Into remission he went and out of remission he came. Less than a year after losing my dad, the ugly face of lung cancer was back to take my mother. So I had plenty of up close and personal dealings with cancer from early on. My mother lost her mom to breast cancer when she was only 5 years old. I lost my best friend to ovarian cancer when we were both only 35. My wonderful husband’s first wife died of melanoma at age 36. And even my great canine companion was diagnosed with doggy lymphoma. I traveled with him every Saturday morning an hour away for his cancer treatment. Little did I know way back then, that Murphy was teaching me how to cope with my own chemotherapy many years later. I felt like I should simply be called the Cancer Lady!

My perspective certainly changed when I got my own cancer diagnosis. Though cancer had impacted my life so many times over, those life-altering words ‘You have cancer’ were never directed to ME personally. For the first time, I did not feel in charge of anything as I had been with my parents and friend. I was in a tailspin and couldn’t stop. My diagnosis was of a rare lung tumor. It was so rare, in fact, that no doctor here had ever even seen it, let alone treated it. Every doctor I encountered wrote me off with sentiments such as – “no light at the end of your tunnel” and that I wouldn’t see flowers in the upcoming spring. My oncologist seemed to experience actual pleasure every time he showed me that cancer bar graph of his. Lung cancer’s bar was so teeny it was barely visible. Oh but that was not enough for him. “You know,” he would say, “your type tumor isn’t even represented on that graph. It’s not even in that bar.”

I would sit in the chemotherapy center and watch all the women with ‘other’ type cancers being fussed over. They were spoken to so kindly and were offered warm smiles and genuine caring. I was the pariah. I sat by myself and the only time one of the chemo nurses came by was when my buzzer went off to change the bag. Talk about feeling like a leper! I often cried. I learned quite a difficult lesson those days. Yes, lung cancer is viewed very differently than any of the others. And I cried some more. Oh those days were dark in our house that fall. I was shocked. I was scared. I was depressed. I was so many things.

But most of all I was heartbroken for my wonderful man. Who wrote the book on fair that he was to lose another wife to cancer? I believe he was immobilized with grief. So I pulled myself together and discussed how things should be. The tumor I had is known to cause extreme pain and an excruciating death. At 36 my husband and his wife were ill-prepared to face death. So they did nothing. He was left to take care of so many things during her last days at home. I was determined to spare him such pain this time around. So I planned my funeral, checked into hospice policy and respite care. All paperwork was updated. I was ready to go. Well, I suppose I was not really all ready to go. No – I researched day and night for information about pancoast tumors. I read everything written about pancoast tumors – everything I could understand that is. Technical stuff – I didn’t get any of that.

None of my doctors ever mentioned getting another opinion. I don’t know how things operate in different cities, but at the time of my diagnosis there was no patient advocate for me. I was forced to become my OWN advocate. So I painstakingly got an appointment at Sloane-Kettering in New York. It took months to get that to happen. Took what little energy I had to get all that was needed like paperwork and copies of scans, etc. Every time I entered the cancer center to request additional information I was told that the medical folks here were perfectly capable of handling my case and I was literally scowled upon. Finally we were on our way – off to NYC. Friends actually were HAPPY that I was going to NY. What restaurants would I eat at, what shows would I see? Couldn’t they understand that I was dying and didn’t want to eat anything or see any shows? No, they could not!

Sloane-Kettering sent me away. Nothing they could do for me, I was told. Only after continuing my research did I discover that on staff was a pancoast expert. What was up with being sent away without even a consult? Hmmm…….. A third opinion at FoxChase, a comprehensive cancer center in Philadelphia, resulted in no better an outcome. On THAT staff was a pancoast expert. MY research had uncovered the maximum radiation that could be had and still be a viable candidate for surgery. This expert wanted me to far exceed that limit. I was not willing to do that – at least not yet. Dead end.

And then……in the middle of the night while Googling whatever it was I was Googling about pancoast tumors, a support site popped up. Now I had visited some of these ‘support’ sites over several months and found them to be too depressing and graphic. I did NOT need to read about someone’s grandfather and the terrible death he experienced. But something this particular night just seemed to reach to me from that website. It was Lung Cancer Support Community –LCSC. And there I found HOPE for the first time since embarking on my personal journey. I found hope AND help. I found the FIRST pancoast survivor. Up to this point I thought everyone diagnosed with this tumor was dead. Donna was alive and well and a 5 year survivor!!!! She directed me to other pancoast survivors on the website. And I discovered the name of the GREATEST doctor in the whole world (in my opinion!) He is at the National Institutes of Health – NIH – in Bethesda, MD.

This story of my journey can continue several more chapters. One could be entitled ‘How Lung Cancer Changed my Relationships with Friends or rather Friends with ME.’ Another could be “The Wonderful People Lung Cancer has Brought into My Life’. Everyone should read “The National Institutes of Health – My Magic Kingdom’.

My final chapter would be titled, ‘My Life is So Blessed.’

I am a 7-1/2 year advanced lung cancer survivor.

___________________________________________

Kasey is a volunteer moderator for LUNGevity’s Lung Cancer Support Community, supports patients and families in her local community and uses her story and experience to raise awareness and HOPE about lung cancer.

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Kasey, this was fantastic. What a story. I could relate to the other posts you could write with titles like "How Lung Cancer Changed my Relationships with Friends or rather Friends with ME".

Some of my friendships have been deepened greatly and are richer and better than ever. Surprisingly some of the friends I thought were my closest friends have backed away, completely.

What kills me is that people are afraid of me (it). I'll see someone at a gathering, and she will look at me, and no one is around so the obvious thing would be to say HI, and she turns her back and walks away. I know that is insecurity, fear, etc., but it still hurts.

Ah, I'm fresh back into this thing again, so I'm super sensitive all over again. I guess it will get better with time.

Good job on the article.

MI Judy

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Kasey, you are such an inspiration and such a gift to all of us here. Your story is written so wonderfully well and I hope every lung cancer patient, caregiver and person touched by this disease will read it. There is so much to be learned from your experience and how persistent research and perseverance can pay off. Thank you for sharing. You have always been an inspiration to me and I feel blessed to call you my friend.

Love,

Sue

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