They call Ovarian Cancer the “whispering” cancer. The symptoms are quiet but persistent.
Wear your Teal on Tuesday! Open a dialog. If someone you know has persistent digestive troubles, nausea, bloating, bowel, or bladder issues, be persistent in getting them to see a doctor! Ovarian Cancer often presents as vague tummy trouble. Ask your doctor for a CA 125 test. CA 125 is the Cancer Antigen marker in your blood that indicates something may be awry.
…author at the Honolulu Star Advertiser and told her my story. One of the questions she asked was, “What instigated you to start your blog?” Honestly, the first time I battled in 2012 and won, I thought it was one and done. I thought I could walk away from cancer.
Turns out I thought wrong.
In 2014, when it came back again, I realized that I needed to share my information with others fighting the disease and anyone who wanted to understand the battle against cancer-plain and simple. I chose to share my experience so others could learn from it.
I celebrate because you cheered me on…because we made it through to the other side…because even in negative things there is a positive result! At my recent appointment, my oncologist mentioned (and seemed surprised) that I’d beat the odds …..but he doesn’t know the team I have! (FFF-Faith, friends, and family!)
People ask, “What do you get for your 4th anniversary?” (I saw this on Google, so I know this to be true) …Hallmark suggests fruit/flowers or juicers appliances. That’s great for marriages, but how should you celebrate cancer, or being free from it? Is there a correct day? Should I turn it over to Miss Manners to decide? Some choices:
The day the you get gobsmacked by the doctor with the untimely advice that despite your healthy lifestyle you have stage 3C cancer? (August 6, 2012)
The day they remove the cantaloupe muskmelon sized tumor that was nestled inside your healthy body. (August 16, 2012)
The day the doctor decrees you to be #NED (No Evidence of Disease)…Woohoo! (May 30, 2013)
The day it comes back and you have to do it all over again….surgery…chemo…radiation….humbug (Definitely not this one!) (February 14, 2014….yes, Valentine’s Day!)
The day you get the next all clear! (completed one year of maintenance doses)(October 6, 2015)
So I have officially chosen August 16th, 2016…four years from my first surgery…Melon Day! My “fruit” anniversary!
I saw a pair of sneakers while trying to avoid political commentary in my Facebook feed by a company named Skicks. They create Ovarian Cancer and Breast Cancer shoes that help raise awareness. I thought that was the perfect 4th anniversary gift to myself!
I was diagnosed August 6, 2012 with Stage 3COvarian Cancer and now almost 4 years later (3.789 years but who’s counting?)…I am watching my son graduate. Two surgeries, countless chemotherapy infusions (Carboplatin, taxol, Gemcitabine, and Avastin), and 25 radiation treatments, but our family finally made it. There are no words that can completely describe our joy…so I’ll do it with pictures.
Friday, May 27, 2016-Baccalaureate Service Central Union Church
May 28, 2016, the Big Day arrives-“light” showers and then sun on campus
In the words of AJR….”I’m Ready”
The stage is set….to hear “Benjamin Robert Roley”
Finally, the fun!
and more friends…
And sister Rachel
Mom and dad…
Traditional Lei giving Post Graduation….Grandparents…
Great news!! (definitely worth two exclamation points) Another clean PET scan! Diagnosed in 2012 Stage 3C…Three and a half years later…2 surgeries, countless chemotherapy infusions, 25 radiation treatments and a year of maintenance. Finals are graded and it’s time to enjoy the family and a much needed relaxation time.
A few decades ago What’s Up? was one of my favorite songs and it accompanied me on many a walk?
….”trying to get up that great big hill of hope…for a destination”
I am so close to my destination! Two more maintenance treatments of Avastin left! Trying to take a breath and reflect on it all. The ubiquitous “Journey” doesn’t quite do this process full justice. It’s been three years since I heard Dr. D introduce himself as the Cancer doctor…Three years since I met the amazing nurses Jackie and Cindy.
I’ve had two surgeries, 25 radiation treatments, and countless chemo treatments (Carbo, Taxol, Taxetere, Gemzar, and Avastin). Don’t forget the two Ovarian Oncologists, one rheumatologist, one neurologist, one Radiation Oncologist, and a sprinkle of radiation from MRI’s and PET scans. Three years since family and friends rallied around me with support in all forms to beat this nasty disease.
Today, I do wonder why I am still here when many of my “cancer” friends are not. I couldn’t come up with an answer to that question, but I know that I’m thankful for my luck. I do think my positive attitude has made a difference in my survival. I’m grateful that I have an opportunity to have time and health to do the things that matter to me.
I took that thankfulness on the road this summer with a family trip to New York. If you look carefully in the picture below, you can see The National September 11 Memorial and Museum. The view from One World Trade Center is amazing, but you can’t help but look down at the emptiness that was once the footprint to the Twin Towers. New York City was buzzing all around us, but nestled among busy blocks is an oasis.
What fascinated me was the story of the Survivor Tree. This is the impossible story of survival of a single tree that was crushed beneath the rubble of 9/11. This was the one and only tree from the plaza that survived. The tree was nursed back to health and is itself a story of perseverance and resilience. As a side note, it survived Hurricane Sandy as well. That is one tough tree!
The take-away lessons for me and although I am a little weathered, I keep going. The permanent issues are livable, so I live with them….and survive. My message?
Don’t wait till you get sick to remember what matters
A “can-do” attitude is a much needed prescription for any struggle
When you get knocked down, get back up, and then do it again. Repeat as necessary.
What are you reflecting on in your life right now?
I recently spoke with a Mid-Pacific graduate, Matt Hoe*, whose father passed away in 2014 of colon cancer. I admired his courage as he fought through the grief of his father’s passing and turned that pain into an award-winning film. His words about cancer, which I first heard at a chapel assembly, were penetrating: “If I were to give you one piece of advice, it would be to learn that abstaining from saying that the sky is grey does not make the clouds go away. It just means that you don’t get to talk about the sky.” Matt’s words resonated long after I heard them. Each month I go to an Ovarian Cancer Support group meeting where women from all over Oahu come to share their stories of surviving and fighting cancer. Many of the women are many years removed from their initial cancer fight and some are still in the thick of it. Some are bald, some wear wigs, some have scraggly fine hair (that would be me) and some have pretty luscious locks. Each month we have newcomers struggling on that shifting sand of a new cancer diagnosis. Cancer is relentless, and there is always a ready supply of new patients. We don’t have all the answers for each other, but we share our stories in hopes that our own personal experiences and treatment will give hope to each other. For me, it’s comforting to know that many are living fully having successfully navigated this beast.
We are like a big teepee-each of us is a stick that props up the total structure. It’s our collective nature that makes us powerful. Recently, there was an audible gasp when one of the women shared that she was entering palliative care (palliative care is primarily focused on providing pain relief rather than searching for a cure). She spoke of her situation matter-of-factly and at the time, I wished I could hug her pain away. Being among this group of loving and supporting women can’t cure the pain (or the disease), but it eases the burden of having to carry grim information all alone. We are also there for each other’s joys and triumphs!
How many times have you thought about someone who is fighting a major health issue (whether cancer of something else) and were afraid to reach out for saying the wrong thing? Saying nothing is equivalent to doing nothing. Knowing that others are there to support you is a type of palliative care in itself. Matt continued, “For those of you who feel a storm brewing, I tell you this: learn to talk about the sky, and those crinked clouds of emotion that so often choke your voice. Feel the rain on your skin. I know that it’s scary to be vulnerable. But trust me, It’s scarier to be alone when it starts to storm.” Will you be successful when you reach out to those who are suffering? Maybe or maybe not. It’s the reaching out to each other than connects us all together.
Matt’s words were so powerful and they need to be heard. “And for those of you who have friends caught in that storm, learn to listen. You might feel uncomfortable when they open up to you. You might be afraid to say the wrong thing, and somehow make the situation worse. But more often than not, people just want to be heard. They want to know that someone cares about them — that someone will be there by their side. The most comforting words that I have ever received were, “I’m sorry that it’s storming over there. That really sucks, but I care about you, and I’m here for you.”
Take the time to reach out to your friends who are facing grey skies–do it now!
Please watch Matt’s video: Separateness is an Illusion
*Matt is a recent graduate and an aspiring filmmaker who hopes to tell people’s last narratives in film
The early thrill of a new habit wears off after about a month and according to Franklin Covey only 23% of people see their resolutions to completion. Any time someone says I’m never going to do “X” again, there is a part of me that wonders how long their forever will be. When the doctor told me that my cancer treatment could be “forever,” I wondered the same thing. In college we studied Greek Mythology and Sisyphus (the man doomed for all eternity to push a boulder up a hill and then watch it roll back down again). I wonder what his attitude was. How did he feel about it? Were some days better than others? Did he have coworkers with their own rocks to push up their own hills? Did they get together on weekends to commiserate over rock pushing? Did he try to get it done first thing in the morning or procrastinate till late afternoon? How do you handle those perpetual tasks that never go away?
Today marks my 9th maintenance treatment of Avastin for recurrent Ovarian Cancer. I almost can’t imagine not seeing my doctor every 3rd Tuesday and my fabulous nurses Jacqui, Cindy, and Jodi every 3rd Friday. Jacqui is even in my “favorites” in my phone contacts. It’s like making the top ten of speed-dialed numbers!
I have my own little Ground Hog Day of doctor visits and treatments.
I have a favorite chair!
And my own little TV and blankie!
I told a coworker that I would be out Friday for chemo and she said, “Are you still doing that?” The answer is yes, but I’m pushing my “rock” in style. I may not get to choose if I push my rock but I get to choose how I’ll push it! We all have some form of rocks we’re pushing, but the trick is enjoy the journey. Plus, I get to see some pretty awesome people.
“I thought you would have something fascinating to say about Cancer.” Someone said this exact phrase to me (in writing) and it took me aback. But it’s true, I have nothing more profound than anyone else to say on the subject…except… that I have been there and done it. I don’t have the exact combination of cancer fighting drugs or herbal supplements, but I am a work in progress, learning as I go. I do have a lot of experience. If there were badges for surgery, radiation, chemotherapy, side effects, ongoing medications, neuropathy, vomiting (don’t forget vomiting) etc., I would have a complete sash. Getting sick doesn’t make you a “sage on the stage” or a life guru, but it does help to ease the path for others that are getting that cold shock of meeting an oncologist for the first time. I don’t have the cure for cancer, but I am there for those that are going through a similar events with themselves or a loved one. I can share my story and bring you along with me. I have first-hand experience with things that I never wanted to experience in the first place.
No one expects that they will get a life threatening disease. Would you handle thing similarly? Maybe, maybe not. I am simply the guinea pig that you can study and the friend you can support and pray for. You can use this article as a catalyst to ask yourself, what am I doing in my life that I want to be different. Lots of advice leans to “live in the moment” variety, but that moment-to moment living is harder to maintain than you might think. When planes are landing and taking off is when I am completely in the moment. Whether well or sick, the cat still needs to get fed and the oil still needs to get changed on the car, and someone needs to do those pesky taxes. I still get frustrated with traffic and people that take up the whole aisle at the commissary (why?). But above all that, I know the overwhelming support and love from friends (and strangers too) that has buoyed me when I have felt down. I have new networks of friends that evolves constantly including a wonderful Ovarian Cancer Support group. People I might never have met in my previous life have now become friends that I can count on for advice.
This weekend I found out that a former student had recently committed suicide. He struggled in middle school as an outcast and left the school I was teaching at under cloudy circumstances. Eventually, the family moved to a different state and I hadn’t heard anything about him until I saw the obituary. Many people tried to help him when he was a troubled 13 year old. At 16 years old, he decided that life was too painful to keep on living. Today, I am contemplative. Did he continue to turn away from help? Were others trying to reach out and connect with him? I pray for his family as they try to go on with their lives. My goal as a teacher is to reach out to each student individually, wherever they are in their “journey.” With my blog, I try to reach out to those who are struggling with the entire baggage that is Cancer. Some are just here to support and be supported, and others for advice. Fascinating? Probably not, but hopefully, helpful.
No pictures today, just thoughts. We are all here together.