This is the monthly newsletter of The EllaCris Foundation for Women's Gynecological Cancers, and The I Hate The C Word Facebook Group.
"I don't belong here..."
I was scared to death. Everything seemed so routine. This is no big deal… from the nurse, the doctor and even the receptionist. The waiting room was filled with sick, bald-headed women, so this was no big deal to anyone else. I wanted to scream, "I don't belong here! How could this happen to me? I take care of my body, I eat only the best organic food, I read every label, I never smoked—not even one time as a teenager. I don't drink—I never did. I never took recreational drugs."
Why me? Why is this happening to me? Am I dreaming? Please let me wake up. These were the thoughts that played in my head over and over again, along with the most devastating one of all.
I'm going to die.
That's it. Over just like that. My life has been pulled right out from under me. I will never see my beautiful grandchildren grow up.
And this, my friends, is how The EllaCris Women's Gynecological Foundation was born. It all began with my journey into the world of C. I hate the C word so I refuse to say it in its entirety. I will never give it the power that it craves and feeds off of.
I started the "I Hate The C Word" Facebook page to chronicle my journey with C, and since then have grown a following of more than 12,500 people that are going through or have gone through a similar experience, either themselves or with a loved one. C is daunting, my friends. It is powerful and frightening, and forever life-changing, but so are we. As a group, we are powerful, and together, we can help others by raising awareness of this insidious disease so no one else has to travel the difficult journey we have. The time is now. We have to raise our voices. We have to continue to talk about the symptoms, and we have to continue to let others know they have to be their own advocates.
This monthly newsletter will chronicle our journeys, provide some helpful and healthy tips, and keep you aware of everything The EllaCris Foundation is working on and planning. You are a huge part of all we do. Your stories, your advice, and your support of one another have inspired a movement. We are that movement. We want to educate others and raise awareness. We want more research and development for earlier diagnosis. We can do this, friends. We will do this.
- Carol DeLisa, Founder & CEO, The EllaCris Foundation
- April Pansa, Founder & Executive Director, The EllaCris Foundation
A diagnosis of late stage ovarian cancer. How does this change a woman other than the obvious? It is very much like being born again only without the lifetime ahead that one is born with originally. No longer are you the person you were before diagnosis. Unrecognizable. Say good-bye to what was once your normal. It is the new normal which in reality is anything but normal. Your life revolves around surgery, treatment, chemo, labs, cat scans, MRI's, pet scans, CA125 labs, doctors, hospitals, clinics and the list goes on. How does one adjust to this new regime? Everyone adjusts in different ways. I can only speak of my experience which I would hardly call adjusting.
My preference now is solitude and keeping my own counsel. It has become exceedingly difficult for me to relate to anyone but my Teal Sisters. Never before had I known anyone with cancer, so this is a new experience, albeit one that I definitely could have done without.
Friends and family help in so many ways, however, no one can understand unless they are one of the very unfortunate ones. Does my family suffer more than I do? I think so, yes. But I am no longer a source of comfort for anyone. I am self-centered and focused on getting through every day to remain in this exhausting and never ending fight.
No one wants to hear me cry. it is a drag. Understandable, but cry I must. No one wants to hear this sad story, but desperately sad it is. No one knows what happened to the girl who never said no to parties or company or phone calls. Depressing? Yes, of course. What happened to her is that her life changed on a dime.
What happened to her is that she is facing death. What happened to her is that no conversation can stop the sadness. Sadness in that there is no cure. Sadness each time one of us passes. It is a little like the short story, "The Lottery." Who will be next? And yet support each other we do. Courageous women? You bet! We have banded together to help each other through, no matter how bad we are feeling. Band of Sisters fighting a war with no ammunition and yet getting up each morning having another go at it. Talk about might, resilience and courage!
We don't know how long this fight will go on and how or when it will end. So many have said to me that no one knows how long anyone will be here. That is true, but no one thinks of it (or at least I never did) as we do on a daily basis. Be joyous while you are still here? Not possible for me when I hear a clock ticking in my head.
We are on an orphan train. No cure and no clue as to where we are going. I can see it in the face of others including doctors. I can hear it with each prescription written to make me more comfortable. Don't want drugs, but want to be healthy again. Don't want pep talks or any kind of talk. Want action. Want research. Want funds. Not one celebrity or TV personality or newsperson or anyone in the government will touch this issue with a ten foot pole. How does that make one feel? Makes me feel like there is no hope so why bother. Makes me feel like so few women get this scourge that the effort is not worth it. We are mothers, daughters, sisters, wives, friends. We are worth it, but this issue to this day is not being addressed but by the very few who are committed to making a difference in our lives. So, a word to the wise must be sufficient: Ladies know your bodies, be your own health advocate, be vigilant, find a doctor who will listen, spread the word as not one more woman should be caught off guard by this sneaky and pernicious disease.
Don't want sedatives for anxiety. Want to have my feelings while I am alive. Don't ask me how I am unless you can deal with it. If this is too depressing for some, I understand, but do not judge what you cannot possibly understand and pray that you may never know.
Born again, check. Crying like a baby as a baby cannot express feelings to others with words, check. Unfortunately, the similarity stops there. And oh, to have a long life ahead just like a newborn! Wouldn't that be swell?
We are inviting you to have an EllaCris experience in our online store! Our mission is to stock our shop with quality items and services that will have something for everyone. Our generous vendors have agreed to donate a portion of their proceeds back to our foundation and for this, we are very thankful.
February Features: Soylicious Candles
Soylicious candles are hand poured in small batches in the Hudson Valley located in beautiful New York State. They use 100% all-natural and renewable soy wax, which burns cleaner and longer than paraffin wax. Only the finest fragrance oils are used in the candles to provide a long lasting scent, and the wicks are 100% cotton and contain no lead or other metals.
Soylicious offers a large variety of scented soy candles, such as aromatherapy, fresh, sweet and seasonal. They also offer citronella and our popular odor eliminating scents .....and yes, they really work!
They offer a complete design and technical service to all customers, ensuring that every aspect of development and production are of the highest standards. Soylicious candles can even be requested dyed in your favorite color. Their candles have been praised for the unique and expert design work. Crafting favors for those special occasions as well as unique gifts and centerpieces for parties, showers and weddings, with personalized attention to detail and a commitment to excellence is what sets Soylicious Candles apart.
Please contact me, "Dot," at "What's Hot In The Shop" | Call: (845) 392-6870 or Email: DorothyBizzoco@theellacrisfoundation.org
if you have an interest in participating in our shop, or just feel the urge to shop, by all means have fun and shop till you drop! It's all for a great cause. Join us in helping to save lives, as early detection is key. Know the symptoms!
Ovarian cancer is not a one-dimensional disease. Many people are under the misconception that all women diagnosed with ovarian cancer have the same disease, receive the same treatments and have the same response to similar treatments. Yes, those of us diagnosed with this disease have ovarian cancer, but ovarian cancer is not a single disease. It is made up of various distinct types and histotypes.
The three main types of ovarian cancer are epithelial, germ cell and sex chord stromal. Each type is named according to the type of cell from which they start. Epithelial ovarian tumors start in the epithelium tissue, which is the lining of the outside of the ovary. Germ cell ovarian tumors develop from the cells that produce eggs. Sex chord stromal ovarian cancer tumors develop in the connective tissue cells that hold the ovary together and produce estrogen and progesterone. Within these main types of ovarian cancer are histotypes. A histotype is any of a range of tissue types that arise during the growth of a tumor. These histotypes are either epithelial or non-epithelial in origin. Ovarian cancer histotypes that are epithelial in origin include high grade serous carcinoma, clear cell carcinoma, endometrioid carcinoma, mucinous carcinoma and low grade serous carcinoma. Some ovarian cancer histotypes that are non-epithelial in origin include germ cell tumors and stromal tumors such as granulosa cell tumor and Sertoli-Leydig cell tumor.
Ok, enough with the medical lesson. I feel it is important to give this information to inform people that ovarian cancer is not a single disease and should not be treated as such. It is comprised of various types and histotypes that differ in the way they originate, in their level of aggressiveness, and in the way they respond to treatment. We need more aggressive research on each of the various types and histotypes of ovarian cancer. We need more aggressive research to develop treatments that specifically target each of the different types and histotypes of ovarian cancer. We don't need "one size fits all" treatment.
The definition of hope according to dictionary.reference.com is as follows; the feeling that what is wanted can be had or that events will turn out for the best. For me the word hope means that and so much more.
In September 2010, I got the call that would bring the word "hope" to my mind everyday. It was the call that set me on a path to discovering that I had stage 3C Ovarian Cancer with metastasis to over 30 lymph nodes.
In the days and weeks following my diagnosis, I was surrounded by well-meaning friends and family with offers of help, food, comfort, love and encouragement. All of those things were wonderful and gratefully accepted. What I yearned for most, and sought out on my own, was "Hope." Without it, I could not go on. I could not handle the 10 hour surgery ahead of me and I could not endure the months of chemotherapy to follow. Without hope it would not have been possible to forge ahead. I looked for hope in the eyes of my doctors , if they could not, or would not, offer me hope then they could not be my doctor. I sought out hope in the stories of survivors I talked to. I found hope in my own mother's story: she had survived this same cancer for over 30 years. Hope was the one thing that got me through and allowed me to dream of better days ahead.
Now, even after remaining cancer free for 4 years I wake up every day with hope. I have hope that my cancer, which is notorious for returning, will not return. I have hope that I will live to dance at my grandchildren's weddings. I have hope that my husband and I will be able to celebrate our golden wedding anniversary together.
My biggest hope, however, is that more advances will be made and that someday there will be a cure for this disease that has taken far too many already.
In my seventeen years of experience, I have worked with many women undergoing treatment for cancer. In many cases, radiation is needed and in others cases, chemotherapy. Either way you may see visible differences in your appearance, and that's where I come in.
Whether it be a fuller face, skin discoloration, or loss of eyebrows or lashes, with today's technology and tools, I can help.
Q: I recently spoke to a group of women asking, "What can I do with my droopy eyelids?"
A: It's all about the eyelashes! Eyelashes help open up the eye, especially if you can create a little height in the corner. Ardell Lash Manufacturer has come up with a product called lash accent #301, which is only applied to the top corner of the eye. Application is easy and used with the Ardell adhesive, then applied with a tooth-pick for easy application. The women that I have engaged in conversation with seemed to just encounter one eye drooping, so in that case it's only necessary to do one eye. The good news is that two come in a package, so you will be able to keep the other for a second application. I'm hoping this gives your eye, mind and feminity the lift you're looking for.
If you have a beauty question, please ask Jen by emailing her: JenBates@theellacrisfoundation.org