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)!

end-of-dieting
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.

 

Get out of the Car

Wet, muddy, and humid. Not-so-perfect conditions for the weekly cross country meet, and yet the parking lot was packed and the runners were enthusiastically warming up. I spent a good 10 minutes motivating myself to leave the climate controlled car to find the Mid-Pacific tent of runners and fans. One of my students, after asking why I was wearing white shorts, thanked me for coming out to see the meet. (I have no excuse for white shorts in rain and mud-none.)

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Kaiser High School Cross Country Meet

Before 8 am, most of the runners were soaked and muddy and the races hadn’t even started yet. I was surprised how cheerful and full of laughter they were. I told my son afterwards that I always love talking to Student X because she laughs at all my jokes. His response: “Yeah, she laughs at a lot of things that aren’t funny.”

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Runners from Hawaii Mud Run

The meet today comes on the muddy heels of a really junk week.  I realized that I have thrown up more in the last 4 months than I have in my entire life. On Tuesday, I spent most of the day in the hospital getting IV fluids, Potassium, and Phenergen, trying to get my system back in balance from the previous chemo. I rallied for Wednesday and was back in the classroom again. I wasn’t actively vomiting, so I figured I should be at work. It is not just a duty concept that brings me back to school every day.  Today’s events really captured it for me. Despite their  own “Struggle Bus” of conditions, kids just get out of the car and get going. No one complained, they just did. That is what energizes me!

Even though I see them in the classroom every day, it was fun to see them overcoming the elements and enjoying each other’s company.

Physics
Physics Test Bank

 Monday, it’s back to Physics!

Boot Camp Lessons for Cancer

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Wedding of the Century-Prince Charles and Princess Diana

A long, long, long, long time ago…I went through military boot camp (Basic Cadet Training-fondly known as “Beast”) at the United States Air Force Academy. It was the summer of 81, and while Princess Diana and Prince Charles were getting married, I was in the foothills of Colorado Springs enduring the most rigorous training program of my life. Whilst (I love that word!) Anglophiles were glued to their television’s watching the “wedding of the century,” I was doing push-ups, pull-ups, and running through the Obstacle Course and Confidence Course  in Jack’s Valley, Colorado.

bootcamp
Boot Camp training-Not Kym Roley

Every day, we woke at the crack of dawn and we pressed through the day until taps at 9 pm. It was the most intensive time of my life-forcing my body to do things that were not in my wheelhouse. (I was an Erudite in a Dauntless world= for fans of the book Divergent! #Divergent #Veronica Roth) I spent my high school days in ballet, drill team,  and AP classes, but then I was thrown into a world where walking across a 4×4 beam, one story above the ground, was the only measure of success.

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Jack’s Valley, CO Summer of 81-Kym Roley

Why did I not die?

Beam
Building “confidence” in Jack’s Valley! Try walking from one side to the other untethered!

How do you get through Boot Camp? How do you get through Cancer and its treatments? How does anyone get through the monumental challenges of their life?

1. Find good friends to share the ride on the Struggle Bus with you. Life is more fun when you’re singing The Wheels on the Bus songs together. My Academy classmates are still my friends 100 33 years later. Today, my friends and family  help me laugh and forget the hard reality of what I’m going through.

2. Every day-get up, get dressed, get going. Get through. Day 1 may just be getting one foot to go in front of the other. By Day 20, you can chuckle at how little you could do on Day 1 . Your muscles learn what you expect of them. If you expect nothing, they give you nothing.

3. Give it your best…your best will get better. In the 1997 movie Gattaca, the character Vincent is asked how he accomplished such a remarkable feat, and his answer was…”I never saved anything for the swim back.” Give it all! You can’t be thinking about the next lap or the next obstacle. Give everything to each moment!

4. Believe in God’s plan(s)-Plans to give you a hope and a future! Jeremiah 29:11 There is a plan for you. You just have to trust that there is a plan.

5. Get past the bad days by reminding yourself that “Everything will be okay in the end: If it’s not okay, it’s not the end.” -John Lennon There are days you wish you could just forget, where nothing goes right, but that is not the end of the story.

Finally….. My memories of that time (and now this battle with cancer) have crystallized, and while they include the struggles and disappointments, ultimately, the successful finishing of difficult obstacles is what sticks with me.

parade
USAFA-Class of 81 Acceptance Parade

 

 

No Evidence of Disease (#NED)

The words that every cancer patient wants to hear-No Evidence of Disease! I was sitting on the exam room table when the nurse came in with the report and flopped it open for me to see. At first, I had no idea what I was seeing, but then, the words jumped off the page-NED!

Radiologist's Report
Radiologist’s Report

A special girl, Morgan, brightened my day with a bouquet of Star Lillies. And yes, I want to keep “filing batter” for a long time.

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“Congrats on your filing batter”-Love Morgan

What’s next for me? Three more chemos to knock out any remaining or developing cancer cells. Then, monthly (and by “monthly” they actually mean every three weeks) chemo for a year. I still have a long haul ahead of me. Blood pressure is too high (from chemo, of course) and platelets keep dipping (from chemo, of course), WBC (White Blood Count) is all over the place, and RBC (Red Blood Count) is dipping into transfusion land.

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Tripler’s Chemo Room

BUT, I am blessed! I feel lucky every day I get into work and am able to do my job and see those students. I’ve been through the ringer-surgery, radiation, chemotherapy, but because of friends like you, my battery is recharged. I can officially say I am a two time cancer survivor!

NED-No Evidence of Disease Movie poster
NED-No Evidence of Disease Movie poster

Pet scan time-”Eyes to Thighs”

So you want a Pet?

IMG_8693
Leilani Kitty-Our Pet

No, not that kind…this kind…a Positron Emission Tomography (PET) Scan.

petscan
Areas of hyper-metabolic activity light up!

Tomorrow is my six month scan. We are hoping not to see any areas light up this time!  Today (Thursday) is the prep day. Starving the body of sugar and focusing on low carb eating.

A day of eating this…

photo 1
Genoa Salame and Provolone Cheese-$4.99 at Safeway

And this…

 

photo 2
Salted Peanuts

Tomorrow (Friday) is just watery water…Nothing else!

water2
Watery water

Then, they inject the radioactive tracer…and allow it to circulate in the bloodstream.

Injection
Injection of radioactive tracer element

One hour of sitting “Quietly”…no music, books, talking, moving, etc. They really mean it when they say sit quietly. After 1 hour, the dye has had a chance to circulate through the whole body (organs and tissue) and you’re ready for the scan to begin. Any areas of hypermetabolic  hungry cancer cells, will be activated and light up during the scan.

Then, the tube. It like a crystal ball to look at your innards.

pet-scan-machine
Pet Scan machine

And then waiting…for results…till Monday-an exercise in patience impatience. What makes you impatient? How do you cope?

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Seeing the doctor Monday after school.

Struggle Bus

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Struggle Bus

Admit it…there are some days that you start the day off on the Struggle Bus to Struggle CityWednesday was that day for me. I woke up nauseated, but it was too late in the morning to call in sick and I had a full day of teaching ahead.  I asked my husband if he thought it was something I ate.  His response: “Kym, you just had chemo, so no, I think it’s the chemo.”  I always try to ascribe the bad days to something else…virus, fatigue, food poisoning, etc.  but it just keeps coming back to the fact that I am putting poison in my body in order to fight the cancer. Then, I spend most of the next week fighting the poison that is fighting the cancer. Like the shampoo bottle says: Lather, rinse, repeat.

It just doesn’t seem right.

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Chemo Infusion

In English classes, we teach that there is no story unless there is a conflict. Something has to happen to the main character in order to make the story interesting, and unfortunately, as the protagonist for our own individual story we mostly don’t get to choose the conflict.   Every time I check social media, I see so many battles that my friends are fighting…injury, injustice, illness, heartache, senseless crime, etc. My battle is unique to me, but I know we’ve all felt that feeling-How will I get through this day?

photo
Cancer Playlist
photo
Cancer Playlist

Start with the Cancer PlayList

 

 

 

 

 

 

Dig Deep.  Going through something life changing requires all your personal resources. Reach to your faith, your friends, your family. Wednesday, I reached out to my friend, and she was there. She is going through her own battle with debilitating back pain, but she searched  all over the office  just to find me some ginger!  I had one hour before class was to start to get control of the situation.  I was calculating distances to the closest  bathroom in case of emergency vomitting or worse-as one teacher-contract I had so succinctly put it-”explosive diarrhea.”

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Cancer patient

Whenever I start to feel sorry for myself, I think of the sad young man I see weekly in the chemo room. He speaks to no one and he appears to be young, mid-20′s.  His answers to the nurses are monosyllabic. His agony is evident on his face each time he comes in.  His mom comes in with him and does what she can do to ease the suffering. It just brings to mind how unfair and indiscriminate cancer actually is.

We all have conflict-some big and some small-but all achingly real. Our lives have so many pitfalls along the way that the only real solution is to reach out to each other to create a resolution to our own story. I couldn’t do this without you!

Building a tower!

This week marked two weeks of school and crossing over the halfway point in chemo. It reminded me of building straw towers in physics class.  Students started out the week with 50 straws and 2 meters of tape and were tasked with building a tower that could support a golf ball on the top. The best towers had a strong base and a lot of support. Some towers never made it off the ground: they were flimsy and poorly thought out. The winning towers were the ones in which the builders created alternate plans when encountering disappointment.

Screen Shot 2014-08-22 at 5.39.11 PM
Straw Tower to support a golf ball.

 

I want to model my school year on those successful towers and teams. Each week my actions need to mimic the successful characteristics of the soaring towers! It needs to be carefully planned with lots of support, and a fallback plan if things don’t go the way I intend.  Last weekend, I think my tower went too high. I pushed myself a little too hard and paid the price over the weekend with a brutal headache and record breaking vomitting. I was reminded of Buster’s quote from Arrested Development, “Yes, I was flying. But a little too close to sun.”

This week I had Back-to-School night on Thursday followed by chemo on Friday. Week two has been better because I know the students now and everyone is getting back into the mechanism that is school. My son’s Cross Country coach says it takes two weeks of training before the initial pain subsides. Well, I have completed two weeks of training, and I am optimistic that Monday will be my best day yet! My lesson plans are ready and alternate routes are planned as well.

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Fortunately by Remy Charlip

 

 

 

 

 

 

 

 

 

 

The test of my chemo/work schedule will be this weekend as I deal with the side effects of Carboplatin/Gemzar/Avastin. Fortunately, we had a great meal delivered by some friends at church and I had a delicious nap this afternoon. So that helped mitigate the lengthy chemo process.

One of my favorite books growing up as a child was Fortunately by Remy Charlip. For every bad thing that happened to Ned (the main character), there was an equal and opposite good thing (Newton’s 3rd Law!).  “Fortunately, Ned was invited to a surprise party. Unfortunately, the party was a thousand miles away. Fortunately, a friend loaned Ned an airplane. Unfortunately, the motor exploded….etc.”

Fortunately for me, I have some wonderful family and friends and coworkers, so I am expecting great results from this year!  What’s your favorite childhood book that still speaks to you and motivates you?

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Ned, being chased by a tiger…Fortunately, he can dig!

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