Tag Archives: side effects

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.)

Boiled egg and salt
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.

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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?

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.

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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.

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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.

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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?

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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.

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USAFA-Class of 81 Acceptance Parade

 

 

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.

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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!

Back in the Saddle-Getting the job done

Weekly reality TV shows start each week with a recap of the past weeks’ episodes including the most dramatic moments.

Does not include the Phernegen IV

So, if you are just turning in to this show, here’s what happened in previous episodes of “Kym’s Ovarian Cancer.” After successfully beating Ovarian Cancer in 2012, I received an ominous phone call from my docctor.   My blood cancer marker had unexpectedly doubled. To be specific, it was February 14th, and I was driving on the H3 from one side of the island to the other. When the doctor told me the news and indicated that the cancer was probably back, I had to pull over to the side of the road to take that information in. That was easily the worst Valentine’s Day ever!

Screenings and pre-surgery appointments followed. My exploratory (never-sounds-good-when-you-say-it) surgery was on March 10th. The affected area this time was the peri-aortic lymph nodes. This is apparently a dicey area in which to operate because the area is filled with a tricky vascular network. Four weeks post surgery, I began a series of 25 daily radiation treatments (I think we landed on 4500 CentriGreys) concentrated in the peri-aortic lymph node area. About a week after that was finished, we started on chemo. I was labeled Platinum sensitive, so Carboplatin was chosen again, along with Gemzar and Avastin. All medication is delivered via a port that has been surgically implanted in my chest wall. Fast forward through several failed WBC’s (White Blood Count) and unfortunate vomiting parties, we made it to July 4th!  We are again playing the  low can your white count go?  Then there was the Give yourself a Shot Day (Neulasta category),  If you were producing this as a show, it would make an excellent storyline with a huge cast of characters and a dramatic plot.  Maybe Christina Applegate will play me. Who will play you?

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In this week’s episode of Kym’s Ovarian Cancer, we get a major dose of fun! The first chemo of the cycle is all of the meds to include Carboplatin, Gemzar, and Avastin.  The prelude is a nice fat bag of anti-nausea meds. Today, they’ve added an extra bag of anti-nausea meds. (Today’s total of IV bags was 7: 2 bags of hydration, 1 bag of steroids/antinausea, 1 bag Carbo, 1 bag Gemzar, 1 bag Avastin, and a bag of Phenergen.) Next Friday will be a few bits of steroids and Gemzar. After the next treatment,  I’ll be halfway though  chemo. This will be a major milestone. Despite the fact that I am not even halfway now, I am still ecstatic! Why? I am going back to work next week! I am beyond excited about seeing the students and my fellow teachers. Just to be normal again (even with these Friday blips) is one of the things I am most looking forward to (did it hurt when I ended that sentence with a preposition?) On March 7, the last day I worked before my surgery, I went outside and the beautiful Mid Pac campus and the sweet Manoa air almost made me cry (Seinfeld’s Newman once said this about Hawaii…”The air is so dewy sweet that you don’t have to lick the stamps.”)

My favorite day of school is always the first day of school. It’s like the first hole on the golf course, no mistakes and everything is awesome (Check out the Lego movie). I predict now it will be a great first day. The chemo will drag on into October, so will keep the spirits up by hanging around fun people who make me laugh.  Maintaining that energy will be the largest problem through the fall terms . Side effects from chemo can last up to 6 months, so even if you’re done, you’re not done.

SPOILER ALERT: In future episodes, Kym will go on maintenance chemo. PET scan will occur in November to see if these meds are arresting the growth of the tumors. Watch the hilarity ensue!

 

Traveling with Cancer

Traveling takes on a whole new meaning for cancer patients. Every sneeze and every cough on the airplane has the potential to spread unwanted infection. To most people, it’s just an annoyance, but when your immune system is compromised there is so much more of concern. I had the opportunity to fly recently in what is essentially the middle of my chemo treatment. I survived the debulking surgery in March, 25 radiations, and 4 chemos already, but would I survive the passenger on flight 898 who touched the seat-back tray with his germ filled hands on the previous flight. How thoroughly do airlines really clean those planes? What about the recirculated air from the 250 passengers all around me?

I traveled with the blessing of my doctor and my chemo nurses. Nurse Cindy said to me, “We do these treatments so that you will be able to enjoy your life.” That is my plan! I brought my bag full of drugs with me (wondering if TSA was going to wonder about a gallon Ziploc filled with prescription meds). I brought 3 bottles of hand sanitizer, three packs of Clorox travel wipes, and two cloth masks ordered from Amazon. (The only masks I had at home prior to this were from Home Depot made with the intention for home improvement projects.) Not only do the masks ward off germs, I’ve noticed most people subconsciously create a healthy personal zone around mask wearing travelers. Although rather hot and uncomfortable, they kept me insulated from all that swirled around me (even if it was only a mental protection). My Trip is still a work in progress, but a welcome break from cancer, treatments, and hospitals. When I return, I will be ready to pick up arms and begin the fight again…as my sister said…RFM…Relentless Forward Motion. I concur.

 

 

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