Category Archives: ovarian cancer blog

Supporting Someone with Cancer! A How-to guide

Have you heard the song, “Here I go again” by the 80’s band Whitesnake?

“Here I go again on my own
Goin’ down the only road I’ve ever known
Like a drifter I was born to walk alone
An’ I’ve made up my mind, I ain’t wasting no more time.”

Are you going it alone? You don’t have to! Giving help benefits both the recipient and the giver. Surveys show that cancer survival can improve with a support network (10 tips on how to survive cancer)…and a 25% increase in survival rates! I like those odds. The American Cancer Society rated my survival odds at 41% for five years. If you count the original  year of diagnosis….I am in the survivor group! Yeah!

The two parts of support include offering help to those that are ill, and the ability to accept help that is offered. When you are sick, it’s hard to reach out to friends and family because you don’t want to be a bother. Share this article with a friend if they ask what they can do to help? When you reach out to someone who is ill, it’s hard to know what to offer that will actually be a help.

Here are some suggestions for way to help:

  1. Offer to drive to an appointment or watch kids (many clinics don’t allow children)
  2. Offer to sit with your friend during chemo (it’s pretty boring and more fun with a friend or loved one)
  3. Make a meal! (Check with the family first for dietary restrictions. Kid friendly dishes helped my family immensely and took the burden of making a nightly meal off my shoulders.) Check out Take them a meal  (this website is an awesome way to organize meal delivery for families).
  4. Send a card-seems simple, but this is so uplifting when you are having a rough day.
  5. Send a care package. It can be simple! Saltine crackers, cough drops, tissues….etc.
  6. Send a positive text message. You got this! was my favorite one!
  7. Call! Leave a message! Many times it is not a great time to talk, but hearing your friend’s voice is a cheery reminder that friends have not forgotten you.
  8. Visit! (Don’t just drop in unannounced please! Set it up in advance)
  9. Make a donation to Cancer research.
  10. Donate your hair! Wait, what? Very well health

    But where? Here are two!

    Locks of Love

    Pantene Beautiful Lengths

 

 

Spoiler alert! Come back tomorrow to see what happens next! (Hint: think hair donation!)

 

 

 

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Through the Fire

Six years ago…I hiked Koko Head Crater for the first time…over a 1000 stairs…straight up.

At that time, I didn’t even know cancer was lurking in the wings…

Today, I had the opportunity to tackle the beast again. I went through the fire again!

From Leo on Trip Advisor “Some hikers throwing up on the side. View on top is great. Getting to the top gives a good feel of accomplishment.”

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Koko Head Crater 630 am

After reading the reviews, I was apprehensive. Could I do it again after all the crap I’ve been through….surgeries…chemotherapy….radiation…?

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The beginning was not too rough

The railroad-tie bridge is not for the faint of heart. I remembered that from before. The crab-walk seemed to be the preferred method for passing over the 65 railroad ties suspended above ground. Shirley, you would love this!!

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The view from halfway

I’m pretty sure I was crawling for the last 100 yards to get to the top.

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Finally made it-love me a fanny pack

Thank you Stephanie for pushing me!

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Stephanie helped me get there!
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 I only fell twice on the way down!

Injuries: bruised tail-bone, scraped leg, swollen wrist

Ended up taking a two hour angry nap

Before Koko Head After Koko Head

 

But we did it!!

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My Poem for Dr. Dietrich

My oncologist-Dr. Dietrich-retires from United States Army today. He has been by my side for 6 years. Two times, he literally saved my life. I will be forever grateful to him for giving me more time to do the things I want to do in life. His kind manner has changed the way I see the medical profession. I am headed to his retirement ceremony now!

I wrote a poem

Dr. Dietrich-the cancer doc

helping patients with their fear and shock

his most helpful phrase-“I’m not worried”

kept me from feeling flustered and hurried

each appointment began with a little chit chat

I know I’m really going to miss that

He leave us now with his beautiful wife

off to Kentucky…for a brand new life

forever he will stay in our hearts

cancer’s got nothing when he gets to start

with every person he’s walked a few miles

always kicking it Dietrich style!

for me he’s the best..there is no second

my own super hero, my own secret weapon

Dr. Dietrich-

thank you for all you have done

I actually think we did have some fun

Much Love,

Kym

Health is the Crown

Health is the crown on the well person’s head that only the ill person can see.”-Robin Sharma

From this…

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Medications, masks and chemo

To this…

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Healthy!

Latest monthly blood-work shows my CA level (Cancer Antigen marker) has gone down to 6.0, the lowest it has been in over a year! I’m up for my 6 month mammogram in September (high risk for Breast Cancer).

Ten things I’m grateful for:

  • Travel-California, Oregon, Washington, and Mexico. Saw great friends, ate great food, drank delicious wine and Mexican-made margaritas
  • Friends-all of you who have been there by my side during this 5 year journey
  • Fight club-this rock solid group of supporters
  • Family-the whole crew! Most especially my husband and children. You have seen the good, bad, and ugly of cancer.
  • Faith-the many prayers from all over the world!
  • My Bullet Journal– a place to track all of my healthy habits-I’m now two years without eating red meat
  • #midpacific Five years ago on August 6, 2012,  I had just started work and three days later was diagnosed with Stage 3C Ovarian Cancer. My school supported me through it all-the surgeries, the chemotherapy, the radiation, and recovery!
  • IB Coordinator position and USAFA liaison
  • Walking partners!
  • ENERGY!

I’m so excited for what is yet to come!

 

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.

Health update! #ovariancancer

The question was…Do you call on Friday afternoon and possibly get the bad news, or wait until Monday for that same possibly bad news? Is knowledge power?  Or, do you shift your paradigm and call as soon as humanly possible and hope for the best of all news? My philosophy during this entire “journey” has been “head down and power through.” I’m happy to report that my cancer number (CA125) has actually dropped from a brief uptick last month. Good-to-go until the next test in 6 weeks (which in itself creates its own form of stress)!

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Is our health binary?

One of the concepts I’ve throwing around in my head is the idea that our health is not binary. We are not just a “0” for everything is perfect, or a “1” for everything is fail. You’re never “just sick” or “just well”- there is a large continuum in which we all fall.

Ellen J Langer says it much more artfully than I in the book Counter Clockwise

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“Just as we like to imagine that the mind and body are separate, so we imagine that at any one point in time we are healthy or we are not, and attitude that brings unexpected consequences. When we are healthy , we imagine we don’t need to pay much attention to our health. When we are sick, we imagine that we should be able to find expert information that cures us.”

It’s tough to live in the moment…neither speculating ahead or reflecting back, but right now, that is exactly where I am. Savoring this great moment! Thank you all for your continued well wishes being sent my way!

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.

 

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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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?