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…
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
In 2013, my son and I went to see a Steven Sodergergh movie, Side Effects-a cautionary tale on the effects of an experimental drug that hit close to home for me (not the crazy wife part…but the using of new-to-market drugs and seeing what they do part). I won’t spoil it if you haven’t seen it yet, but I would definitely recommend. I think I’ll add it back to the Netflix queue for a another look see. Of course, anything with Jude Law in it can’t be half bad. In the continuing beat-down of cancer cells, my doctor and I are always in quest of the perfect medicines with minimal side effects.
In addition to being the Professional Vomit Queen, another issue I am fighting is increasingly high blood pressure. My oncologist says that the numbers are pre-hypertensive (at 140/90) so not yet treatable with medication, but a bit concerning. He is “not worried yet.” I want to avoid yet another medication to treat the side effects of the medications I am taking… So, in the words of Tobias Funke…”Let the great experiment begin“…
I am making the decision to cut back on salt. If you know me at all, you know that I love salt! Have you watched any episodes of Chopped? One of the primary reasons chefs get “chopped” is chronically under-seasoned food. (The “spa” chefs invariably go home in the appetizer round.) The translation-more salt! I know Amanda Freitag would be disappointed to hear that I will be using less salt instead of more. I’m so sorry, Amanda. It’s probably not permanent, but it’s in my best interest.
Nothing tastes better than a boiled egg rolled in salt. I could actually eat this every single day. Well…there are things that taste a little better, but not a lot. (Buttered popcorn with salt…) We even have a container of table salt in the teacher workroom that often finds its way to my desk. (I really consider it my salt.)
Salt intake is something I can control. In the oncology world, so much is out of my control. We’ll just assume that my starting blood pressure is mediocre at best and go from there. Next Wednesday, I’ll have my next check-up and Friday the 13th (that doesn’t even sound good), my next treatment of Avastin and a PET scan. Double whammy!
Starting now….I will try cut out table salt and soy sauce (How is that even possible in Hawaii?). This will be step one.
Sound off! Have you tried to cut back salt in your diet? Tips? Thoughts? How much of an effect will this really have? Let’s see.
One of my favorite magazine (and now internet) features has always been the “Where are they now?“ segment. Something about being in the dark with zero information regarding a person, and then “BAM” right back into all the nitty gritty of their lives-some interesting, some bizarre, some tragic…….is so compelling. I thought I’d take you on a little Where are they now? trip.
1. David Cassidy-former star of 70’s show The Partridge Family and frustrated hard rock musician (I learned that in VH1 Behind the Music) in a pop music world has plummeted to the world of drunk driving in NY, garnering what appears to be a second DWI (the first from Florida).
The rookie cop evidently didn’t recognize the former teen heartthrob. (I think I would have.) Let’s hope he’s back on track now!
2. Mary-Kate Olsen My kids were fan of the twin powerhouses (to include Ashley Olsen) from the television show Full House. The favorite movie of our family was I am the Cute One. You can find this gem on http://www.youtube.com
Now, she has a jewelry line that makes a BILLION dollars in sales a year.
3. Haley Joel Osment Evidently I was not the only one who wondered whatever happened to the Sixth Sense boy. ABC news had a recent feature on him with this photo (and article)…What?!? That’s Haley Joel Osment? He is still making movies and currently is filming a movie in which he pays a Nazi.
4. Walter Cronkite-As a child I used to watch the CBS Nightly News with my parents and listen to Walter Cronkite say, “And that’s the way it is.” Sadly, he passed away in 2009.
I could spend hours searching the internet and dropping down a rabbit hole of information, but I wanted to share with you one that recently stuck with me.
5. Diem Brown–You may or may not know of this reality TV star who made her mark in the show MTV Real World/Road Rules Challenge. What impresses me so much about this woman is that even though she diagnosed with Ovarian Cancer at age 23, she fought relentlessly and optimistically against this cruel disease until she passed away at 34. If you follow Twitter, you may know that her last tweet (posted days before her death) showed her resilient spirit.
Her fight (chronicled in People Magazine) focused attention on this silent and slippery disease. Here is a reminder of the symptoms:
Common myth: Your annual PAP smear does NOT detect Ovarian Cancer!
Where am I now? Doing well! After a total of two surgeries, 25 radiation treatments, and 28 frontline chemotherapy infusions, I am undergoing maintenance Avastin infusions every 3 weeks to keep this disease at bay. In the meantime, I can be found teaching Physics to some pretty darn amazing students on most days!
At one time, not too long ago, I was actually able to walk up Koko Head Crater-it was challenging, yet not impossible. The popular Oahu hike was approximately 1 mile…straight up…1048 stairs/railroad ties up the side of a enormous cinder cone. The view from the top was spectacularly breathtaking. These days, I think I could only walk from the parking lot to the trail head. However, even when I was able to successfully complete the hike, there were a few other folks that passed me like I was standing still. On the way down, still others were barely making it up. My challenge was a cake-walk for some and an impossible dream for others. Food for thought as I refocus my efforts toward getting healthy.
Now, I’m trying to get up the hill of recovery! What’s the plan? It’s a work in progress, a multi-pronged work in progress. Exercise-check. Ableit, in a much smaller fashion than BC (before cancer). My immediate goal is to walk up the hill in the neighborhood (all the way to the top). Healthy eating-check. Thanksgiving is right around the corner, but for now, it’s plenty of veggies/protein and bags of spinach (they say it’s washed, but I am suspicious, therefore doing that hard salad spinning myself). I am re-acquainting myself with plain Greek yogurt and a sprinkle of Grape Nuts and fruit on top. It’s not as terrible as it sounds…really. Reading-check. On order from Amazon:
This Thursday marks my second maintenance treatment along with a Doc appointment on Monday. I haven’t been to Tripler Army Medical Center in three whole weeks (3.3 weeks). I am focused on getting myself sussed each day and up by 5:17 am and back into bed by 9:36 pm (this has something vaguely to do with sleep cycles and a sleep calculator). Still a long way to go, but the view on the way back up again is pretty rewarding. Plus, I am enjoying the lack of vomitting more than you can possibly imagine.
In a reflective mood? Maybe a little, but I’m looking backward and forward simultaneously. Musically, maybe some 4 Non Blondes will help you start your day with What’s Up?
I am scheduled for another PET scan today. I have the routine down fairly well. Cut back on carbohydrates two days before the scan, and go carb “free” on the day before the scan. I am not a huge carb fan, but the moment you tell me that I can’t have carbs, that is all I want. This photo is the “good” carbs, but I am thinking any carbs would be good about now.
The PET scan uses a radioactive tracer with glucose (sugar). Once you starve your body of sugar, and then re-introduce it in the form of glucose, it happily travels to all areas of your body….particularly areas of high metabolic activity. High metabolic activity is not good. My recent scan (Sept. 5) was good, so that bodes well for today. My number one goal is to focus on getting my body back to eating well, feeling well, and exercising well. So, what’s the hitch? My latest CA levels (the markers that they use to check Cancer) have notched up a bit. Could be nothing, could be something.
So, I am waiting. No food since last night at 6 pm. I am allowed to drink watery water (not my favorite) and I’ll be to Tripler Army Medical Center in a bit. First order of business is accessing my port, and then they’ll start the radioactive tracer. One hour of complete solitude in a dark room will follow. No music, no TV, no books, no company, nothing. (I guess they don’t want my high-intellect from listening to Morrissey or watching The Walking Dead to light up the scan.) After that, the tube. I am fairly good with the claustrophobic aspect of the tube, but my hands usually fall asleep during the scan. They used to tape down my forehead and hands, but evidently, I have graduated from this (or someone complained). Now, I just have to hold them above my head.
Results? Probably in a day or two. So much of this disease is waiting and watching. I know October is Breast Cancer Awareness Month, but I thought I’d put in a plug for Ovarian Cancer Awareness. Simply put, if you have had unexplained digestive issues for more than several weeks, it would be a good idea to get it check out. I urge you to go and check out the symptoms.
Wet, muddy, and humid. Not-so-perfect conditions for the weekly cross country meet, and yet the parking lot was packed and the runners were enthusiastically warming up. I spent a good 10 minutes motivating myself to leave the climate controlled car to find the Mid-Pacific tent of runners and fans. One of my students, after asking why I was wearing white shorts, thanked me for coming out to see the meet. (I have no excuse for white shorts in rain and mud-none.)
Before 8 am, most of the runners were soaked and muddy and the races hadn’t even started yet. I was surprised how cheerful and full of laughter they were. I told my son afterwards that I always love talking to Student X because she laughs at all my jokes. His response: “Yeah, she laughs at a lot of things that aren’t funny.”
The meet today comes on the muddy heels of a really junk week. I realized that I have thrown up more in the last 4 months than I have in my entire life. On Tuesday, I spent most of the day in the hospital getting IV fluids, Potassium, and Phenergen, trying to get my system back in balance from the previous chemo. I rallied for Wednesday and was back in the classroom again. I wasn’t actively vomiting, so I figured I should be at work. It is not just a duty concept that brings me back to school every day. Today’s events really captured it for me. Despite their own “Struggle Bus” of conditions, kids just get out of the car and get going. No one complained, they just did. That is what energizes me!
Even though I see them in the classroom every day, it was fun to see them overcoming the elements and enjoying each other’s company.