Tag Archives: Cancer

Cancerversary #4-It’s a Celebration!

 

Why celebrate at all? 

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:

  1. 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)
  2. The day they remove the cantaloupe muskmelon sized tumor that was nestled inside your healthy body. (August 16, 2012)
  3. The day the doctor decrees you to be #NED (No Evidence of Disease)…Woohoo! (May 30, 2013)
  4. 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!)
  5. The day you get the next all clear! (completed one year of maintenance doses)(October 6, 2015)
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Melon Day it is!! August 16, 2012-initial surgery date

So I have officially chosen August 16th, 2016…four years from my first surgery…Melon Day! My “fruit” anniversary!

From this

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At Tripler Army Medical Center with Ben and Rachel

this…

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Hemonc Clinic at Tripler Army Medical Center with Renee

this…

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setting up for blood testing

and this…

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Radiation treatments at Tripler Army Medical Center

to this….

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Gingham Style….four years later! #summerofkym

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!

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Available at Skicks.com for Breast and Ovarian Cancer

Best “fruit” anniversary ever!

What are you celebrating in your life?

Graduation 2016 “Sto1k6d”Mid-Pacific Institute

I was diagnosed August 6, 2012 with Stage 3C Ovarian 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

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Baccalaureate at Central Union Church in Honolulu

May 28, 2016, the Big Day arrives-“light” showers and then sun on campus

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Mid-Pacific Institute Campus in Manoa Valley

In the words of AJR….”I’m Ready”

 

The stage is set….to hear “Benjamin Robert Roley”

 

 

 

 

 

Finally, the fun!

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Ben, Marvin, Kyler, and Christine
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Ben and Marvin…friends since 4th grade

and more friends…

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GK and Ben…friends since preschool!
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C. Roscoe has taught all three Roley kids!

And sister Rachel

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Rachel made the “Ben there done that” sign

Mom and dad…

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Ross and Kym and Ben

Traditional Lei giving Post Graduation….Grandparents…

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Grandma Joan
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Gpa Bob and Gma Shirley
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Good luck Ben!!

 

Mele Kalikimaka

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.

Mele Kalikimaka to you and yours!

Stay tuned in 2016!

From this…

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PET scan at Tripler Army Medical Center

to this…

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Shopping at Pearlridge Center-Hawaii

 

What’s Up?

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.

The view from One World Trade Center...overlooking Ground Zero
The view from One World Trade Center…overlooking Ground Zero-by Mark Sugino

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!

Survivor 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?

PET SCAN-I’m Ready!

Do you remember in the early 90’s when “Take Your Daughter to Work Day” became a thing?

Today, you (and the kids) get to come with me to my PET scan and see what it’s all about! First, get to the hospital early and look for parking! (Create a parking spot in the grass on the hill.)

Tripler Army Medical Center
Tripler Army Medical Center-No Parking

Rush to get to the Nuclear Medicine Clinic-then wait!

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Nuclear Medicine Clinic at TAMC

and wait…

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Waiting room fun with the kids

The day prior to the scan: Prep instructions for PET scans. Basically, no carbs, no exercise, no alcohol, no nothing. In my house, we call that a “potato” day because we just sit around and do nothing.

The morning of the PET scan. Nothing but water. Drink it from a fun mug though!

Lucy Mug
Lucy Mug from Jan E.

Fill out all the paperwork!

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Surgeries? Radiation? Chemotherapy? Neulasta?

Check blood sugar! They ask if you’ve been fasting and this will prove it. Numbers must be between 80-200 to proceed. Whew, I passed! (No food or caffeine after midnight!)

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Fasting range should be between 80-200. I passed!

Next up! Radioactive dye injection. The radioactive sugar solution will migrate to the areas of “hyper-metabolic” activity (in other words, seeing something light up is bad!)

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Glucose Solution of Radioactive Dye (note the nice carrying case)

I’ve already been to the chemo room to get my port accessed! I’m Ready!

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Port accessed and ready to go! “I’m ready.”

After the radioactive dye…more waiting…45 minutes for the dye to circulate throughout your system. (My 45 minutes turned into an hour.) 

Finally!

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Fancy new PET scan machine at Tripler

The whole process takes about 3 hours. The actual scan only takes about 25 minutes! Then, off to lunch!

…and wait for results!

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Grey Sky-Talking about Cancer

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Grey Skies Ahead

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.

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Teepee-We prop each other up as we share our stories

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!

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Hand reaching skyward!

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 nothingKnowing 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

Are you still doing that?

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?

Get this party started!

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.

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Groundhog Day starring Bill Murray and Andie MacDowell

 I have a favorite chair!

Save my spot! Heated recliner chemo chair

And my own little TV and blankie!

Watching Living 808! They have TV up in here!

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.

Professional vomit queen-navigating the migraines

Warning: Not for the squeamish. Step away if you have a weak constitution. Migraine sufferers will agree that migraines are no ordinary headaches. Unlike a broken arm, there is no visible indication that your pain level is through the roof. Taking regular pain relief for migraines (for me) is like putting a dropper full of gas in the car and thinking it will take you somewhere . Migraine relief is a much more complicated dance than that. A careful combination of prevention and treatment is my only solution. I should have known the stress of this week was going to trigger a headache, but I always naively believe that this time it will be different. (Remember the movie 50 First Dates? I am like the Drew Barrymore short term memory loss character.) I shouldn’t be surprised when they happen and the route they will take, but it always catches me off guard.  I choose to not think that it is stupidity, but rather optimism. Every migraine trail I take leads to the porcelain dumping ground. (I was going to add a vomit image, but that would just be cruel to all of us, so instead, I’ll add the movie poster) When the headache ends,  it is like a long journey completed.

50 First Dates
50 First Dates

I should be happy that I’ve only thrown up three times in January. One of the side effects I appear to be having from the Avastin treatment is sporadic migraine headaches. The first sign of the headache is a piercing high pitched frequency pain in the back of my head. (It feels like the frequency only dogs can hear that drives them crazy) Then the pain shuffles from back to front and back again.  I sit with an ice pack on my head and I speculate how long it will take till the vomit train begins. Today, I made it 45 minutes. Something about vomiting is cathartic (haha! Really! At least I made myself laugh) It’s like my body realigns and resets itself after that. The trick of getting the pain to go away lies in a careful distribution of Migraine meds, anti-nausea meds, and vomit.

Last time, it was after a fantastic meal of Baked Ziti (which I used to love…I’ve attached a recipe in case you still love it.) That time was the first time that I threw up through my nose. I had a noodle come out my nose. I guess there is a first for everything.

Baked Ziti
Baked Ziti

My sister was visiting us that time, and the next morning she asked if I had been coughing during the night. Yes, I “coughed” a lot that night. It really was good ziti, more so going in than going out. Sadly, I don’t see myself eating anymore Baked Ziti in my near future.

I have recently swapped out Imitrex for Maxalt in the quest to find more effective pain relief. I think the Imitrex works for me, but when it gets thrown up so soon, not as much. Maxalt can dissolve under your tongue and sneak up on the migraine before the vomiting begins (but dissolving pills under my tongue is slightly nausea inducing too). I always wonder at what point does the pain medication count. In other words…If you take a pill and throw it up 15 minutes later, has that pill been ingested into your system enough to work? Or, do you assume it hasn’t and does again.

Today’s headache infused my dreams and woke me with a jolt this morning. 

"Last night I dreamt somebody love me." Smiths lyrics
“Last night I dreamt somebody love me.” Smiths lyrics

The only direction this day can go is up.  

The Musical Chairs of Cancer

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Set-up for musical chairs

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.

View from the Oceanside of Tripler Army Medical Center
View from the Oceanside of Tripler Army Medical Center

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.

Great Aloha Run Hawaii
Great Aloha Run Hawaii

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?

Trying to get up that great big hill!

Koko Head Crater

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:

Small Victories-Spotting Improbably Moments of Grace by Anne Lamott
Small Victories-Spotting Improbably Moments of Grace by Anne Lamott

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?

Don’t forget to check out the sunsets on the way!

Sunset on the North Shore of Oahu
Sunset on the North Shore of Oahu