Tag Archives: ovarian cancer

Fight Club

First was the  shock

Hit by a truck

Statistics grim

Prognosis-yuck

We fought together, you and I

Persistence, humor, a dollop of grit

Defiant battle cries as we took the hits

Some came and fought a battle or two

Many the whole time…the one’s like you

Round two-a surprise…..I’ve often asked why

A protracted war…it made me cry

Our fight club continues in this roundabout way 

We lost another sister just the other day

“How can you go-it’s just so sad?”

But being with these women actually makes me glad

They never give up

Play on

Play on

Radiant faces in various stages

Fighting the ravages-cancer’s wages

Support and prayer

An idea or two

These women in earnest

Elevate you

What is your fight club?

Where do you go?

Who are the people who raise your bar?

I think if you’ll look it won’t be too far.

Pet Scan Prep (24-hour Countdown) Plan your diet and wardrobe now!

Preparing for Christmas in Hawaii is fun!

Decorate your tree and sit back and relax…..and wait for your medical appointment!

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Preparing for Christmas in Hawaii

 

Preparing for a PET scan can be just as painless. Future you will be happy if you’ve planned ahead. Plus, if you don’t prepare properly, there is a possibility they will reschedule the scan! As usual, all my advice comes with the warning to check with your own doctor!

Let’s talk about preparing for a PET (Positron Emission Tomography) It starts 24-48 hours before the scan. The actual scan calls for injecting a radioactive tracer into your bloodstream and waiting to see where there might be areas of unusual metabolic activity (like Cancer) The PET takes place in Nuclear Imaging rather than Radiology. (I have addressed the day of PET in a previous post, but I’d like to focus on the 24 hours prior to Pet in this post.)

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PET machine at Tripler Army Medical Center

The PET starts 24 hours before the actual scan with a sugar free diet (as much as possible) to starve all the body’s cells of sugar. For me, it’s like the Atkins diet for PescetariansCancer cells love sugar! Well….all cells need sugar!

Here is your  twenty-four our hour count-down for diet and wardrobe:

T-24 Breakfast– scrambled eggs and coffee (enjoy that coffee because you don’t get it on the day-of treatment. No OJ either!)

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Fresh Oahu Ka Lei Eggs-Delicious!

T-21 Morning snack-hummus and veggies (no fruits–way too much sugar)

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Prepping snacks (and lunch)! Hummus and veggies 

T-20  Lunch-spinach salad with the lowest sugar dressing you can find (Blue Cheese or Caesar) and hard boiled egg and cucumber.

T-16 Snacks! Lightly Salted Almonds!

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Resealable Blue Diamond lightly Salted Almonds

 

T-13 No workout today-you don’t want to strain any muscles before the scan and accidentally cause a false positive. Some websites suggest not to exercise 48 hours before scan. Check with your physician.

T-11 Pack a small bag for the scan room. Usually chilly, I bring a sweater that I can wear in the scan and warm socks. No Metal anywhere though! Women, I wear a tank top under my clothes so I can wear my own clothes rather than a hospital gown. Bring something to read or your Bullet Journal for planning or a book (The Light Between Oceans by M. L. Stedman will transport you from whatever you are doing!) . I usually don’t bring an iPad.  I don’t like to leave it in a locker and the hospital is not responsible for your valuables. Leave all jewelry at home!

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Teal Tuesday Per Scan Wardrobe

T-10 Dinner-Salmon plus stir-fry mushrooms, zucchini, red pepper-Dessert is fresh watermelon. Did you want wine with dinner? NO-cannot-no alcohol!

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Salmon and water-melon

T-8-Sleepy-time! Get plenty of rest the night before. No time for insomnia…(we’ll do that in another post!)

T-4 Sorry, no breakfast today. No Coffee either! Get over it! It’s for a greater good. Drink plenty of watery water this morning. You’ll want to wash that radioactive tracer out and dehydration is  no fun. Wear comfortable clothing today! Today, it’s okay to wear yoga pants or leggings and a t-shirt or sweater. Steer clear of zippers and metal attachments. They cannot enter the machine and then you’re back to wearing a hospital gown.

T-2 Blood test to see if your blood sugar is in an acceptable range. This is like the lie detector test to see if you consumed too much sugar in the day prior. Safe range is 80-150 mg/dL

T-1 Injection time-the tracer will need 45 minutes to circulate through your body. Some doctors allow reading and/or listening to music, but the policy at our hospital is do nothing. I usually fall asleep in the comfy chair while waiting

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Finally!-Scan time…Relax as they roll you into the tube. The tech will position you and ask if you’re claustrophobic (little late, right? I would ask your doctor for meds prior, if this is something that bothers you.) I work on meditation skills while I’m in the tube.

Then, done! Time to go out for a meal! Results are not immediately available.

What is your favorite book to make long waits short?

Teal Tuesday-why I wear Teal

Before you find your Halloween costume…

Before you get out the fall decorations…

Talk about Teal!

September is Ovarian Cancer Awareness Month….

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.

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Teal Nails

I recently met with Nina Wu….

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Nina Wu and Kym Roley

…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.

So tomorrow, wear your teal.

 

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!!

 

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!

http://www.yelp.com/biz/hale-vietnam-honolulu

Side Effects

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.

Side Effects
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.

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Food Network’s Chopped with host Ted Allen

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.)

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Boiled egg and salt-Yum!

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.

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?