Thursday, February 4, 2010

Fab Feb Preppy Day 4

SC has a special story today about ovarian cancer. I'm off to Creeds with Pippa for lunch and then my day at Lilly Pulitzer has finally arrived.

Please meet Sarah!
 
She has a pink and green preppy car. I've never seen her not smiling or welcoming. Her enthusiasm for life is contagious. To imagine her any other way or worse sick is not a pleasant thought. SC wanted to help, so I asked her some questions:

Tell me your story Sarah, how did you learn you had cancer?
I had two little boys, 3 ½ and 18 months, and I was tired. Really tired. Nap-every-afternoon-or-I-was-a-raging-lunatic tired. I thought it was just the kids, moving into a new house, busy life that was the problem. I was also having some pelvic pain with…um, marital relations, but that seemed to coincide with ovulation, so I thought maybe it was a functional cyst. The bloating was probably due to my exuberant consumption habits (birthday parties, Easter dinner/candy, etc.). There were logical conclusions for all of my (classic ovarian cancer) symptoms, and they kept me from seeing the overall pattern.

My OB/Gyn lives around the corner from me, and walks her dog past my house every day. One morning she stopped to chat with my husband and he told her about my pelvic symptoms. She said I should make an appointment for an ultrasound and an exam. The ultrasound was inconclusive, but the doctor and her NP were both able to feel the growth on my left ovary, both internally and externally (!). She suggested that maybe it was a cyst, and we scheduled a laparoscopic procedure to remove it. The chance of it being cancerous seemed so remote as to be a joke, and I treated it as such.

The blood test for ovarian cancer, called a CA-125, showed that I had elevated antigen levels, but with the normal ranging from 12-35, my level was at 133 – not a shocking number, as most cancerous patients have readings in the thousands. There are so many false positives for this test: menstruation, ovulation, endometriosis, pregnancy… it could have been not-cancer. However, I asked my parents to cancel their planned trip to the canals of France so they could be at my house for my surgery… just in case.

The operation took six hours – clearly not a simple cyst. The tumors had spread all around my abdomen, including on my diaphragm and colon. Chemo followed the surgery, and after five months I was in remission. I had nine months of “real life” before my first recurrence. (Once cancer has spread outside the ovaries, recurrence after remission is practically guaranteed.) I’m on recurrence number two now, and fighting successfully.

What is something most people don't know about living with cancer? Treatments, healing and all things symptom?
For me, living my life as normally as possible is job #1 – keeping my boys on an even keel and maintaining a stable family life is my raison d’ĂȘtre. Baldness was the tell-tale that I wasn’t as healthy as I should be, so I made sure that my wig was FABULOUS, my make-up done, and my outfit cute, and most people couldn’t tell that I was sick at all. I think most women, while they’re glad of help when they need it, are used to taking care of others and want to make sure that everyone’s fine, including themselves. Offer to help a cancer patient, weed her flowerbed, bring her dinner, but understand if she wants to fold her own laundry – it’s a self-reliance thing, and a self-esteem booster that you’re still who you were before you got sick.

Also, as we go through treatment, there are some days that we feel horrible, and want to lie in bed, and some days when we feel nearly human and want to go out! If you call a friend and she says she doesn’t want to see you, try again a week later – she may be dying to dress up and go out to lunch and feel normal.

If you could tell women of the world what to do about getting tested/treated or a must-not-ignore warning sign what would it be?
Listen to your body. If something doesn’t feel right, chances are you‘ll know before your doctor will. Don’t explain away symptoms or tell yourself that you’ll wait until your next scheduled checkup to ask your doctor what’s going on. Ovarian cancer is much more survivable if it’s caught in the early stages. Also, if you see one doctor and you don’t feel that you’re getting the serious attention you deserve, or the doctor tells you you’re stressed out and prescribes an antacid and a sleeping aid and sends you on your way, get a second opinion. Get a third opinion. Don’t stop asking questions until you’re satisfied with the answer. I was young, fit, healthy and active, and with no family history of cancer of any kind. It can happen to anyone.

Did I leave anything out that should be covered?
See below.

How can people make a difference?
It’s not politically correct to talk about, but most cancer patients, even some breast cancer patients, are sick of October and pink ribbons. While breast cancer affects an enormous number of women and men each year, it is, for the majority of patients, survivable, and all the focus on pink detracts from the attention, press, donations and research funding that are desperately needed for ALL forms of cancer, especially those that are much more deadly: lung, pancreatic, ovarian, leukemia, etc. Please consider donating to a number of cancer causes, or to a general cancer-research facility that will allocate the funds across many diseases.

Also, when you buy a product that’s painted pink, or teal, or yellow, and marketed as donating a portion of the profits/proceeds to cancer research, check and find out what amount of money is actually being donated. Many products donate very little actual money to charity, while reaping huge financial benefits by selling pink or teal products that appeal to buyers’ charitable sensibilities. Better to buy a good product and make the donation yourself.

Thank you Sarah! We love you and Stay Strong.

xoxo


SC


33 comments:

  1. Thank you so much for a wonderful interview! One of my BFF's has her PETscan today to see if the tumor in her spine is back, we are all hopeful, but secretly horrified. She finished 5 radiation treatments during Christmas.

    I am not a praying person, but I am praying hard for all these wonderful women with various forms of cancer!

    ((((Hugs)))
    Margaret

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  2. Thank you for spotlighting ovarian cancer. There is very little focus on it and there should be more.

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  3. this was an incredible interview, thank you for shining more light on it to both of you! it was thought that my sis had it at age SEVEN, turned out to just be a benign cyst; regardless, ovarian issues are near and dear to my heart.

    kHm

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  4. What a great post! Cheers to Sarah and her family - she's inspirational.

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  5. What a touching interview. Sarah is such a strong woman and I'm so glad that she shared her story. xoxo

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  6. This is such an important topic! Thank you for posting this!

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  7. Beth:
    Thanks so much for sharing my story and helping spread the word! I hope you have a lovely time with Lilly tonight - send my regards!
    Sarah
    www.carcinista.com

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  8. Thank you for sharing Sarah's story! I have a friend going through this same type of cancer and it is tough. Hugs to Sarah and her family! XOXO

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  9. Thanks for a wonderful stories. I wish all the best for Sarah & her family. My grandmother was just diagnosed with bladder cancer.

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  10. Thank you for posting...I think cancer is something you think will never happen to you. Thank god your husband talked to their neighbor!

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  11. What a wonderful interview and really informative. I reallt appreciated reading this. I will pray for complete remission.

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  12. Great interview. Definitely something that needs to be talked about more!

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  13. This gave me chills. Sarah is such a brave and strong woman. I feel horrible she went through so much pain, but I am proud that she had such a positive and sweet attitude throughout the ordeal. Her family is pretty lucky to have such an awesome gal around!

    I absolutely adored this post! One of your best yet! xoxo

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  14. This woman is an inspiration..clearly she is mentally,emotionally and physically tough as nails! Heres hoping for the best for her and her Husband and kids!

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  15. A true warrior. God go with you Sarah.

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  16. Beth,

    You know this is a topic near and dear to me.

    Further information... It is important to seek the BEST gynecological oncologist there is, even if this means traveling to a city not near you. The initial "debulking" surgery will dictate how long you can live with this disease. Get to the creme de la creme of surgeons. My SIL wished she has known this when she had her debulking surgery at the time.

    ALSO, if you are considering going through invitro make sure you know your family history of breast and ovarian cancers. My SIL went through invitro. She DID have a family of breast and ovarian cancer but did not know there was a link 6 years ago. Before she died she told my husband she NEVER would have gone through the invitro... especially since she (after diagnosis) tested positive for the BRAC gene.

    Her initial symptoms were the same as Sarah's. Unfortunately the loss of a pregnancy at 24 weeks, and the hospital's loss of that placenta delayed her learning about her Ovarian Cancer.

    My SIL is not here any more, but I am here to share what she learned after her diagnosis. Hopefully someone will benefit and a loss of life can be prevented by our cumulative knowledge.

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  17. Thanks for making us aware and sharing Sarah's story. Sarah and her family will be on my heart and in my prayers today.

    Ya'll have a wonderfully blessed day!!!

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  18. Hang in there Sarah! You are a beautiful woman inside as well as out.

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  19. What an incredible story! Thank you for sharing her with us SC!

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  20. Thank you for sharing such an inspiring story. (and I can't wait for more details about the Lilly Golf Cart!!)

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  21. Beth, thanks for this interview with Sarah. What a brave lady she is and I wish her all the best health in her struggle with disease!

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  22. Thanks for sharing this story. Ovarian Cancer was first brought to my attention when I worked for a Lincoln Mercury dealer and they sponsored a fund raiser for Ovarian Cancer. Some people from the Cancer Society dropped off info for us to pass out durring the promotion, and since I was bored I read the brochure and was suprised to find out how little I knew. Sarah's advice to trust your body is the best anyone can give.

    On a brighter note I hope you have fun at Creeds and Lilly.

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  23. Great interview! Thank you, to both of you, for sharing this with us.

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  24. Thank you so much for sharing Sarah's story. She is an incredible mother, wife and friend. Lots of prayers to her and her family.

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  25. Sarah is not only a preppy Main Line/Boston (ahem-she's moved) lady but she has a strength and passion so unique it's amazing. I've known her since we were little (she's also way fun) and I plan to know her when our children have little kids. Love you Sarah! xoxo

    SC

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  26. That's very inspiring. Also, I hope you had fun at Lilly!

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  27. Wow, Beth, what a great post! You should submit it to one of the top women's magazines, where it could do so much good for countless women.

    Hugs and Prayers to your inspiring friend Sarah.

    Renie xox

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  28. Love your blog, I am preppy at heart (as is my Hubby who is from Greenwich, CT, its in his blood). Though we live in NYC, we never lose our preppy spirits. Very inspiring interview.

    Fabulous writing!

    www.wearingwhiteafterlaborday.com

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  29. Thank you so much for sharing Sarah's story with us. What a strong and inspirational woman! I agree that ovarian cancer, pancreatic cancer and some of the other more deadly forms are no getting enough attention. I hope and pray this changes. I wish the best to Sarah & her family. Hugs & Blessings.
    xx Sue

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  30. This truly was a wonderful interview - good reminder to listen to our bodies and cherish our lives! Thanks for sharing - wishing the best for Sarah and her family.

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  31. Sarah & Moms like her who battle through their own illnesses to care for others are the true heros of this world. She is on my prayer list - for certain.

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  32. Thank you for posting and thank you Sarah. A really motivating interview.

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Talk preppy to me! xoxo