As I get closer to the end, I find reason to look back at the journey. One that I feel is compelling, and I will tell you why: Aside from the fact that it spans 3 decades. It is the ultimate story of hope, family and laughter and beating the odds…TWICE. Recently I went to meet with a friend of a friend who was just starting her treatment (at the same place I get mine). She had a friend with her, and she asked me to tell her my story…So I did. The I realized, that I have never really told it all at once before. I have referred to it in my blogs, but never in a linear fashion. I realized, now that I am coming to the end…telling the story from start to finish is good. And of course next week I can write about the happy “movie” ending..
The back-story is short; in 1982, as a senior at BU, I was diagnosed with Hodgkins disease – stage 2A. In a span of 3 days (a week before thanksgiving break) I went from BU’s School infirmary to being scheduled for a Biopsy and tumor dissection (in Boston). After recouping at home in NY for 1 week, I returned to Boston to learn that I had cancer. After another surgery and an 8 day hospital stay, I had to decide on how to go forward with my treatment. While my diagnosis would have put most college careers on hold, I chose to finish out my year, and have my radiation treatments in Boston. My mom had enough on her plate; her mom was ill and my parents had just started a new business. Even though I didn’t have family with me in Boston…I knew if I left I would never return to college.
Granted I had no real support system in Boston (BU students were superficial group) and once word got out – I became less popular than a leper. Every day I left my dorm room at 6 a.m. and fought through the cold weather and elements of the “Combat Zone” to make it to treatment. Cobalt and Liniac radiation treatments 5 days a week for 4 weeks with 1 week break then another round of 4 weeks. I was Bald, stick thin, and nauseas for all of it! But I have no regrets, cause 29 years later I was still cancer free…and while I have encountered many of the known side affects to Cobalt Radiation (hypothyroidism, colitis, mitro-valve prolapse, infertility) I was still thankful….
Skip to October of 2010, after a few routine dental exams, my Mom was diagnosed with Squarmous Cell Carcinoma of the Right Hard Palette – Mouth Cancer. In December she under went a surgery that was very invasive and we were warned to “not expect too much.” After the partial removal of her jaw bone and the removal of her hard palette, she is doing UNBELIEVABLY WELL – her spirit and recuperative powers have stunned her Doctors…She truly is a real life wonder woman. We still had to face 30 days of radiation – but we had already faced the worst – so we were good to go.
January of 2011, we went to meet with my Mom’s future radiologist (another wonder woman) Dr. Randy Stevens. During this initial consult Dr. Stevens talked with my mom as a person, not a patient. She gave her in-depth information into the treatment, side affects, kinds of radiation used – at which time my mom offered up that we were familiar with radiation treatment and told her of my history…
After Dr. Stevens was done explaining everything to my mom (and we had asked all of our questions) Dr. Stevens turned her attention to me. She wanted to know how (and if) I follow up on my disease and if I know to watch for certain things due to the Cobalt Radiation I received. Years ago I learned that Cobalt radiation is no longer used because of all the awful side affects it causes – and that these side affects usually don’t show up for many years. I told I already had many side affects, and I am good about keeping up to date with all of my screenings. The only one I was behind on was my Mammogram and Ultra-sound. (They were originally scheduled for while my mom was in the hospital so I was running a few months behind.) Anyway she asked that I get that scheduled as quickly as possible, because you can never be to careful and, yes, Breast Cancer is also a side affect of Cobalt radiation.
My mom started her treatments in February and I scheduled my mammogram and ultra-sound. Valentine’s day I thought was a good day for that – or maybe not. My appointment was scheduled for 9 a.m. I was home by 10:30 and on the phone with a Dr. at 11 – telling me they found something suspicious on the ultra-sound. One week later I had a biopsy, and was notified within 24 hours that the lump was malignant.
With my mother in treatment (and caring for my father who has advanced parkinson’s. Once again, my mom had enough on her plate to deal with – So I kept my diagnosis to myself as long as possible; a month to be exact. I informed a few very close friends, and they were amazing. They went to appointments with me, helped me get everything scheduled and figured out a plane of action, so by the time I did tell my family – I would have everything all figured out.
In meeting with Doctors, I found out my lump was rather small – 1.6 mm. I was Her2 and ER positive (that is good), My Bracca tests were negative; and later I learned my Onca Types were low grey area range. This was the best way to get this disease. For most it would be – Lumpectomy, Radiation and done — But not so for me. Cobalt had robbed me of choices. After meeting with several specialists I learned that because of the Cobalt, radiation of any kind is off the table. Which means a Lumpectomy is off the table – which means…YES Mastectomy (and a double since I was so likely to get it in the other breast as well. And since I can’t do radiation – Chemo was the recommended course of treatment..
After telling my family – I knew I had to tell the rest of my friends – but I couldn’t bare telling the story over and over, so on May 3rd a blog was born. THE CANCER MADE ME DO IT (thecancermademedoit.com) documents my journey in a light-hearted and up beat manner. It highlights the good that has come out of all this…and yes there is enough good to write 32 posts so far. In this past year I have been swaddled with friendship, love and support from those close and those I didn’t even know and have been deeply touched by it. The cancer damaged my body…but the experience has healed my sole. And every day I count my blessings. I am so thankful for all that I do have – and yes even the cancer. For I believe that all of this has made me a better person…not a bitter one.
I am thankful to be alive, thankful to have an unbelievably supportive and loving husband, and thankful for the exceptional children we have (especially after the Doctors told me it would be extremely difficult to conceive). I met Scott in 1997, and he has always been my rock. Since October, he has been my constant cheerleader (and if you knew him you’d know he doesn’t exactly exude “perky” energy). He often finds ways to tell me how inspirational I am – to him, our kids and anyone who reads my blogs.
My twins are 11 now, and they, too, are just amazing. They have faced a lot in 11 years: Matthew was legally deaf until he was 4 1/2, which was almost fully corrected by simple surgery – and excluding some minor learning delays, he has rebounded at exponential proportions; At 7 they faced the death of their grandma (multiple myeloma); at 8 and 10 they dealt with the deaths of our best friends (and frankly 2nd parents to our kids) both to different forms of cancer; and then recently Matt and Alissa had to watch my mother and my friends suffer through their cancer surgeries and/or treatments, which were debilitating & harsh; they visit and watch their grandfather deteriorate from advanced Parkinson’s disease and, of course they see me on good days and bad ones. With all this, Alissa and Matthew have retained their positive and giving outlook on life. I often write blogs about how inspirational they have been to me through this whole ordeal. Scott, Matthew and Alissa have even motivated me to start a charitable foundation (THE CNCER MADE ME DO IT) that will raise money to be divided between 6 organizations: The Susan G. Komen Foundation, THANC, The Michael J. Fox Foundation, The Multiple Myeloma Foundation (MMRF), The Leukemia and Lymphoma Society, Birdies for Breast Cancer and The Ashikari Breast Center. My kids have rallied their friends to work on ideas for an event for their Mitzvah project. So you can see why I am thankful and why I consider myself blessed.
All this leads up to the kicker…As many of you know this Sunday (September 18th) I turn 50 years old. On that same day is the Susan G. Komen Race for the Cure in NYC – it is the ultimate in birthday celebrations. To be surrounded by my friends, family and thousands who sharre my battle will the best gift I can ask for. I will walk proudly to raise money to find a cure once and for all. For me I get the added bonus of knowing that on SPETMENBER 19TH I will receive my FINAL chemo treatment. I will end my treatment with the way it began. Happy, upbeat, and willing to face any challenge the world throws at me.
So Cancer — BEAT THAT!!!!
Enjoy Every Day and especially Today!
Carol
@funnycancermom
The Cancer made me do it 