Category Archives: ovarian cancer blog

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?

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

Maintaining (Cancer Free)!

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Maintaining the diet!

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.

Happy Valentine's Day
Happy Valentine’s Day

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?

Avastin
Avastin

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….or forever. 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.

 

The Waiting Game

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.

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Carbs

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.

OvarianCancerAwarenessRibbon
Ovarian Cancer Awareness

Done not done

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!

Stepping out over the void
Stepping out over the void

 

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.

Celebrating the New Year!
Celebrating the New Year!

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.