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…
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 students showed up to summer school class every day with large over-the-ear headphones listening to this song by Skrillex and The Doors-Breakn’ a Sweat (a largely repetitive, but somehow catchy electro/dub step song-you probably will not like). But, this song was in my head as I trained for the Great Aloha Run of 2015.
I wasn’t even sure I could do the 8.15 mile Great Aloha Run (and just to clarify, I am talking about walking it, not running). My friend said multiple times, “you can always back out if you are not up to it.” My plan was to just get up and get out there and see what happened. Up until Monday (race day), the longest training “run” was a 1.5 mile walk. In keeping with my 2015 goal of becoming STRONG I felt like it was important to at least get myself out of bed and get down there and try. My January training was stymied by a mega migraine that put me back several days (See Professional Vomit Queen). We woke up extra early to make our way to the Starting Line. I stood on the corner watching the sun come up with my little team of two (Debbie and Ross). We stationed ourselves at the back of the pack along with the wheelchair participants and stroller moms and watched the sunrise reflected over Aloha Tower.
Twenty thousand people had the same idea I did and were out there for the Great Aloha Run! Interesting side note is that many more were registered and just didn’t show up. I am sure they had many good reasons, but come “game day” it didn’t happen. This is what the front of the line looked like (or so the newspaper told me).
Despite a bad knee (Debbie), a bad calf (Ross) and sore hips (me), we finished! At one point, I jokingly said, we should do the Honolulu Marathon in December. This idea was introduced around mile 7, so the enthusiasm for it wasn’t as high as I had hoped.
We completed the race in 2 hours and 25 minutes. Plus, when you add the time and distance to get to and from the start and finish line…we totaled 9.73 miles!
When my own children used to agonize over writing essays for English class, I used to tell them…It doesn’t have to be perfect, it just has to be done. Words on paper are better than no words at all. That is how I felt about this race. We could have been a lot faster and trained a lot more, but we still got out there and did it. Plus, we were together, which made it all the more fun!What’s my current situation? Still plugging away at maintenance chemo every three weeks. I had treatment yesterday and slept 12 hours straight in recovery last night. Still teaching! Still doing!
Do you remember the childhood party game Musical Chairs? I used to love going to birthday parties and playing that. When the music started, you would walk around the circle casually, sometimes touching the chairs, just listening to the music playing a happy tune until some unseen hand took the needle off the record (Yes, we played that game with vinyl albums!) As the music suddenly halted, you lunged into the nearest available chair-hoping not to be the extra child without a seat. If you were unfortunate enough to be the last one standing, you were out of the game.
I compare my current situation to that childhood game. I go along living my life, teaching classes, walking, going to church, watching movies, listening to music, and then suddenly, it’s time for a PET scan. There is a breath holding few days where we wait for the results…Will I still be doing the daily drive to work (#hitraffic), watching Chopped on the Food Network, hiking the Aiea Loop trail, and generally being “normal” OR will I be thrown back into the grind of surgery, weekly chemotherapy, blood testing, and hospital visits. Each scan, I wait for the music to stop, and then determine if I am with or without a chair.
Last year on Valentine’s Day (incredibly bad timing), I received that call that my cancer had returned. Since March 14th, I have earned frequent flyer points at Tripler Army Medical Center. The current status is a monthly (which really means every three weeks) maintenance plan of Avastin and careful monitoring of my CA 125 levels to continue indefinitely (like in forever). Side effects of all of this include some pretty unkind migraine headaches and fatigue, but this is small “kine” stuff compared to the radiation and frontline chemotherapy.
In the meantime, I am listening to the music and focusing on my One Word for 2015! That word is Strength. Rather than making a series of New Year’s Resolutions about working out, eating less, and reading more, I am choosing to focus on a single word-focusing all my efforts towards building strength…in my body, in my mind, in my faith, and in my relationships. My plan for 2015 is not a single day event, but hopefully a series of activities that will make me stronger. Physically, I feel better now than I have felt since January of last year. I plan to run (haha-just kidding) walk in the Great Aloha Run in February. Am I ready? Absolutely not. But, the training process has begun.
I believe I’ll still have a chair in the game come next week! You are not behind. Start now. What is your One Word for 2015?
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?
Do the words “on the edge” connote something good or bad? I am hopeful as I take my first steps into unknown territory that is the start of something amazing. Today will mark (assuming all my blood work is in order) the last of the frontline chemo. If anyone was counting (me), there have been 28 treatments in total (16 in 2012 and 12 in 2014). Twenty eight infusions of chemicals into my bloodstream and 28 mini-battles to get myself back together again. But now… NO MORE Carboplatin and Gemzar….only Avastin. As Ross says, “I’m no mathematician,” (he is) but that is a 66.7% reduction in drugs. That is definitely worth a celebration!
The good news is that the weekly grind of treatments will disappear, but in its stead, is an extended regimen (while not as physically debilitating) which will extend for a full year. Done, but not done. The last time I did this, done was done, until it came back. This time, we are hoping that the Avastin will keep any new tumors from developing and growing. This monthly every three week therapy is one of the hot new cancer treatments that they are using on me. The word on the street The nurses are telling me that it will be much easier to bounce back from these infusions.
Even though 2015 is around the corner, this is my own personal New Year’s Celebration! The “journey” isn’t over by any means, but hopefully, it won’t be as rigorous. I am excited to begin exercising without catching my breath, drinking a glass of wine without getting a headache or vomitting, and spending more time with friends/family instead of crashed on the couch.
The next hold-your-breath moment will be at the end of this month. Doctor has ordered a PET scan to make sure that done means done.
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.
A long, long, long, long time ago…I went through military boot camp (Basic Cadet Training-fondly known as “Beast”) at the United States Air Force Academy. It was the summer of 81, and while Princess Diana and Prince Charles were getting married, I was in the foothills of Colorado Springs enduring the most rigorous training program of my life. Whilst (I love that word!) Anglophiles were glued to their television’s watching the “wedding of the century,” I was doing push-ups, pull-ups, and running through the Obstacle Course and Confidence Course in Jack’s Valley, Colorado.
Every day, we woke at the crack of dawn and we pressed through the day until taps at 9 pm. It was the most intensive time of my life-forcing my body to do things that were not in my wheelhouse. (I was an Erudite in a Dauntless world= for fans of the book Divergent! #Divergent #Veronica Roth) I spent my high school days in ballet, drill team, and AP classes, but then I was thrown into a world where walking across a 4×4 beam, one story above the ground, was the only measure of success.
Why did I not die?
How do you get through Boot Camp? How do you get through Cancer and its treatments? How does anyone get through the monumental challenges of their life?
1. Find good friends to share the ride on the Struggle Bus with you. Life is more fun when you’re singing The Wheels on the Bus songs together. My Academy classmates are still my friends 100 33 years later. Today, my friends and family help me laugh and forget the hard reality of what I’m going through.
2. Every day-get up, get dressed, get going. Get through. Day 1 may just be getting one foot to go in front of the other. By Day 20, you can chuckle at how little you could do on Day 1 . Your muscles learn what you expect of them. If you expect nothing, they give you nothing.
3. Give it your best…your best will get better. In the 1997 movie Gattaca, the character Vincent is asked how he accomplished such a remarkable feat, and his answer was…”I never saved anything for the swim back.” Give it all! You can’t be thinking about the next lap or the next obstacle. Give everything to each moment!
4. Believe in God’s plan(s)-Plans to give you a hope and a future! Jeremiah 29:11 There is a plan for you. You just have to trust that there is a plan.
5. Get past the bad days by reminding yourself that “Everything will be okay in the end: If it’s not okay, it’s not the end.” -John Lennon There are days you wish you could just forget, where nothing goes right, but that is not the end of the story.
Finally….. My memories of that time (and now this battle with cancer) have crystallized, and while they include the struggles and disappointments, ultimately, the successful finishing of difficult obstacles is what sticks with me.
The words that every cancer patient wants to hear-No Evidence of Disease! I was sitting on the exam room table when the nurse came in with the report and flopped it open for me to see. At first, I had no idea what I was seeing, but then, the words jumped off the page-NED!
A special girl, Morgan, brightened my day with a bouquet of Star Lillies. And yes, I want to keep “filing batter” for a long time.
What’s next for me? Three more chemos to knock out any remaining or developing cancer cells. Then, monthly (and by “monthly” they actually mean every three weeks) chemo for a year. I still have a long haul ahead of me. Blood pressure is too high (from chemo, of course) and platelets keep dipping (from chemo, of course), WBC (White Blood Count) is all over the place, and RBC (Red Blood Count) is dipping into transfusion land.
BUT, I am blessed! I feel lucky every day I get into work and am able to do my job and see those students. I’ve been through the ringer-surgery, radiation, chemotherapy, but because of friends like you, my battery is recharged. I can officially say I am a two time cancer survivor!
Admit it…there are some days that you start the day off on the Struggle Bus to Struggle City. Wednesday was that day for me. I woke up nauseated, but it was too late in the morning to call in sick and I had a full day of teaching ahead. I asked my husband if he thought it was something I ate. His response: “Kym, you just had chemo, so no, I think it’s the chemo.” I always try to ascribe the bad days to something else…virus, fatigue, food poisoning, etc. but it just keeps coming back to the fact that I am putting poison in my body in order to fight the cancer. Then, I spend most of the next week fighting the poison that is fighting the cancer. Like the shampoo bottle says: Lather, rinse, repeat.
It just doesn’t seem right.
In English classes, we teach that there is no story unless there is a conflict. Something has to happen to the main character in order to make the story interesting, and unfortunately, as the protagonist for our own individual story we mostly don’t get to choose the conflict. Every time I check social media, I see so many battles that my friends are fighting…injury, injustice, illness, heartache, senseless crime, etc. My battle is unique to me, but I know we’ve all felt that feeling-How will I get through this day?
Start with the Cancer PlayList
Dig Deep. Going through something life changing requires all your personal resources. Reach to your faith, your friends, your family. Wednesday, I reached out to my friend, and she was there. She is going through her own battle with debilitating back pain, but she searched all over the office just to find me some ginger! I had one hour before class was to start to get control of the situation. I was calculating distances to the closest bathroom in case of emergency vomitting or worse-as one teacher-contract I had so succinctly put it-“explosive diarrhea.”
Whenever I start to feel sorry for myself, I think of the sad young man I see weekly in the chemo room. He speaks to no one and he appears to be young, mid-20’s. His answers to the nurses are monosyllabic. His agony is evident on his face each time he comes in. His mom comes in with him and does what she can do to ease the suffering. It just brings to mind how unfair and indiscriminate cancer actually is.
We all have conflict-some big and some small-but all achingly real. Our lives have so many pitfalls along the way that the only real solution is to reach out to each other to create a resolution to our own story. I couldn’t do this without you!
Damyanti Biswas is an author, blogger, animal-lover, spiritualist. Her work is represented by Ed Wilson from the Johnson & Alcock agency. When not pottering about with her plants or her aquariums, you can find her nose deep in a book, or baking up a storm.