Guest Blogger: Hope, Family, and Information, by Aimee
We love recruiting guest bloggers. Why? Because we know that everyone has something great to say or a story to tell, but doesn’t always have the time or energy to devote to maintaining a full-fledged blog. We love offering the opportunity to get your voices heard, as many times as you’d like. Because this is for you by you, the prose can be eloquent, short, long, casual, humorous, educational, full of txtspk, one paragraph, or recurring. The only things we look for are major grammatical issues and formatting – we want to make sure that the text can be edited to fill the blog’s requirements (find out more here).
Why be a guest blogger?
Guest blogging allows the community to engage with each other and reminds us that we are not alone. Reading the journeys that others have taken, and how they have responded to OC, motivates, inspires, and connects us. It’s a vital part of ovarian cancer awareness because we are truly working together – there is strength in numbers.
If you’re interested, please email us at email@example.com. We never turn anyone away and we love working with you to ‘flesh out’ your ideas, if necessary. Sidenote: Readers love photos, so if you’re comfortable providing one to us for publication, please let us know!
We’d like to introduce you to our first guest blogger, Aimee. She has been faithful follower of Take Back Teal’s adventures, from the moment we formed until now. We particularly enjoyed her strong closing statements. Aimee hails from Texas and is a 12 year survivor of OC.
Read on to hear her experience with ovarian cancer and the resources she feels could be of benefit to you (we can never get enough outside support for this fight!). Let’s welcome her and we hope this inspires you to speak up, as well!
Hope, Family, and Information
by Aimee, Take Back Teal Guest Blogger
Immediately following the words “it’s cancer”, a million questions come tumbling through your stunned brain. My first oncologist told me that everyone asks, “how long has it been there?”, and “what caused it
In my case, my doctor didn’t answer either question. I think it’s because no one knows for sure. She also assumed I knew a lot more than I did.
After radical surgery and two weeks in the hospital feeling like I would surely die, I went home to begin the long and scary road I hoped would end in remission and/or cure after chemo, scans, pills and shots too numerous to count. Along the way, there were several more hospital admissions, a goodly sum of side effects, reactions and various complications I didn’t expect or understand.
I’m one of those people who just can’t bear calling a doctor in the middle of the night to ask about a pain or other problem. I don’t even like to bother someone in the next room when I’m too weak to stand or walk to the bathroom. Besides, I live alone. When the scary pains and sensations hit me, I would get into bed and pray until I fell asleep. Mostly, for the first three months, I laid in bed and prayed or slept until the pains disturbed me too much to ignore.
My daughter-in-law, Julie, appointed herself to the task of my care. Her mother’s sister had died of ovarian cancer many years earlier, and Julie was determined not to let that happen to her husband’s mother. But she lived 22 miles away and had a business to run. She drove out to get me for all appointments, then drove me to chemo, pharmacies, stores and back home as needed.Neither of us knew much about what to expect, so we asked everyone we encountered in the waiting room while I waited to see the doctor. I highly recommend this form of information gathering.
I was diagnosed with Stage 4c clear cell, of which I knew nothing. My doctor had told me I probably had about two months to live if she could buy me some time with a good debulking. To my ears, after living with the expanding belly for several months, that sounded like she would be getting rid of my excess weight. I was all for it. Later, a patient used that debulking term and explained what it meant.
For most of the five months I was getting chemo, I was in a fog from fatigue, and too out of it to form a question or understand the answer. But Julie missed nothing. She watched the other patients, somehow learned who was there for the same thing I had, asked them questions and remembered the answers.
One day in the doctor’s office, Julie spied a little paperback book written by Richard A. Bloch, a free-for-patients copy. She took one for me. She also began picking up a little newsletter written by a woman who was 12 or so years out. It was just a little desktop publication, but it had articles about meetings and conferences and new developments, as well as a list of ovarian cancer survivors’ anniversary dates on the last page.
On one copy of the newsletter I found, I saw the name of a woman in New York who was 30 years out, and I clung to that fact like a drowning woman to a raft. When the woman who published that newsletter died after about 13 years out, I felt like my life support had been unplugged. She had been a bright spot of enlightenment for me, that ray of hope when there had seemed to be no hope.Finally, about four months after surgery and first chemo, I picked up the Bloch book and began to read. This was the second of three books Richard and his wife, Annette, had written.They wrote in clear and simple terms, almost conversational. They shared their story and a few others, and in so doing they convinced me there was, indeed, hope.
The Blochs explained what they did and why, and they told about Richard’s promise to a doctor in Houston. If he would save Richard’s life, they would devote the rest of their lives to helping people fight cancer. He did, and they did. They built a foundation for us that serves patients and professionals alike. They have information about all things cancer, with toll-free numbers and a website. Richard lived about fifteen years longer, and if memory serves in spite of chemo fog, he didn’t die of cancer. He had been given six months to live before the cancer would take him, and he bargained his way into fifteen more years.
I haven’t visited the website in a long time, but it’s still there. I need to go there soon. I understand more now, after 12 years. Maybe I can form questions. Maybe I can even contribute something of value to another person beginning a journey similar to mine.
There are a lot of people who feel as I do, and they are all happy to share their experiences. There are a number of new books and lots more websites since my D-day, 12/02/2000. Richard A. Bloch Cancer Foundation, and blochcancer.org will send you the three free books if you contact them. The one I read so long ago was the single most encouraging factor in those dark days. I would urge anyone just diagnosed, or anyone who would like to read a success story written by a true survivor, to contact them and get the books. When you finish reading them, pass them on to someone who needs hope. There is now a magazine that is free to cancer patients, which I think was begun in my first or second year. It’s “Cure”, and it’s free.
The American Cancer Society has a list of publications that are helpful, as well as a nice little kit with section dividers for keeping your information in order. They have a lot of nice helpful people to take your call when you need information or services, at 1-800-813-4673. Of course, you can get free wigs and scarves or turbans, and once a year they will pay for $50 worth of gas to help with your travel to and from treatments. If you can’t drive for some reason, let them know in advance and they will get a volunteer to drive you there and back.
Someone smarter than me once said:
“At the end of any year, you will be the sum total of what you are at first plus the books you’ve read, the movies you’ve seen, the tapes you’ve heard, the television you’ve watched and the conversations you’ve had during the year. Make each of them count toward your ultimate goals.”
Any time period beginning with the words “it’s cancer” should end with a sizable expansion of your knowledge and understanding of what that means and where it can go.
There is hope and there is information, so get it!
- One Wish for Ovarian Cancer (takebackteal.wordpress.com)
- OVA1′s January “Share Your Story” contest winner…drumroll, please! (takebackteal.wordpress.com)