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?
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.
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!
You go on a diet…you lose that elusive 10 to 15 pounds 20 pounds,more? You counted “points” ate Gluten free,ate low carb, ate Paleo and now you are a newly transformed person with ultimate will-power, making excellent choices in all your eating and exercising 3-5 days a week at 70 percent of your heart capacity. (That’s the dream of all dieters, right?) Then what? The hard work of maintenance dieting begins. The process of keeping all the work you’ve done, frozen in time, is the goal of both maintaining your weight and maintaining the results of cancer treatments. The rush of eliminating the unwanted pounds is gone, compliments on your dedication tapers, and friends just expect that you’ll keep that weight off and continue your journey successfully. You hope that you won’t backslide like so many dieters do and become just another statistic.
On Valentine’s Day, 2014, my doctor called to say those dreaded words, “I’m worried” about your CA (the cancer marker found in blood) levels. Shortly thereafter followed surgery, radiation, and 5 months of chemotherapy. Now, we maintain the results with an every-three-week it was “sold” to me as “monthly” treatment of Avastin. Avastin is a fancy expensive drug that has been part of my regimen since May 22nd. Essentially it is an infusion that keeps the cancer cells starved of blood so that they don’t develop into tumors. Side effects for me are primarily headaches, which I am learning how to fend off more effectively. Why didn’t I get the ‘loss-of-appetite” side effect?
How long do you have to keep your maintenance diet going? Weight loss professionals say that maintenance should really become a lifestyle change and it should go on indefinitely What, no more sugar forever? I don’t think so. My doctor called last week and started talking about how my maintenance treatments will continue for a year….wait for it….orforever. Forever? Seriously, Forever. Evidently doctors aren’t unanimous in exactly how long this treatment should be continued or how long it will stay effective.
So that’s where we are. In the dreaded “maintaining” portion of our cancer diet. Time to focus on the basics of good nutrition except for cupcakes, getting the energy to walk up the hills in my neighborhood, and sleeping for more than 5 hours uninterrupted (maybe that part won’t ever happen). I’m actually happy to have the opportunity to normalize my life and not think about life and death on a daily basis. Time to kick back and enjoy the maintaining!
How do you maintain the positive changes in your life-whether diet or exercise or something else? Is a struggle or a piece of cake? I’m Curious.
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.