Category Archives: ovarian cancer fighter 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.

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?

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.

 

Ten things you didn’t know about Radiation Oncology pt. 1

This week began my journey into radiation.  In 2012, I had 16 rounds of chemotherapy (Carboplatin and Taxol) to “cure” the first round of Ovarian Cancer, but I am at it again.  Four weeks ago I had surgery to remove a recurrence of Ovarian Cancer in a Periaortic lymph node (let me Google that for you-Periaortic ) My doctor feels like the radiation is important because of this lymph node’s proximity to major vascular networks and would make for tricky future surgery if any cells remained.  Following this, I’ll jump back into some more chemo (my old friend).  The radiation part of this is the new aspect.  Here are ten things I didn’t know before I started.  (As I progress, I’ll give you “the rest of the story”)

1.  Radiation uses high doses of radiation energy to kill rapidly dividing cells (cancer cells)! My dosage is 180 Centigrays per day.  Total radiation dosage will be 4500 Centrigrays. (Rads are out-Centigrays are in) I feel like I am becoming a super hero ala Spider Man with each beam of energy from the linear accelerator! Just so you know, it doesn’t hurt while they do it!

2.  Every area radiated has its own list of side effects  I assumed radiation was radiation….not so. Preparation is also different for different areas.  One of the most important lessons I have already learned is that radiation is different for different people!  You may have an easy or tough time of it.  Listen to other people’s experiences, but you are unique!!

3.  Every radiation patient is unique!  You get your own “simulation” prior to the initial radiation, so that doctors make a plan unique to you.  You will receive individual tattoos-yes, permanent-that will mark where the machine will be aligned.  I received 3 and each is the size of a Sharpie point). As you begin radiation, preparation and dosage will vary.

4.  There is never ever parking in the “reserved” radiation spots…ever.

5. You should let the folks know if you have any side effects …they need to know!  Evidently, there is an expectation of when side effects might occur, so if it happens too early…they should be informed.

6.  The actual time of being zapped is only a couple of minutes.  It takes a lot longer to get changed, get situated in the machine, align the marks and get set.  My machine makes two compete arcs around my body.

7.  This one is just for someone that asked me…Chemotherapy (for me) was infused through an IV over a period of several hours.  Chemotherapy is systemic and Radiation is targeted.

8.  You can still exercise while you get radiation, and chemotherapy too.  Exercise is one of the great gifts to healing our bodies. Come on, if I can exercise, surely you can do it too! For me, prayer is the other gift!

9.  Same thing for handicapped parking….don’t count on it.

10.  Water, water, water.  This, along with trying to eat healthy, are also critical during treatment.  Plus, my sources inform me that Diet Coke does not count as water.  Drink it up!

Photo below is the linear accelerator!

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25 days

I am contemplating things that I would want to do for 25 days straight (minus weekends) and radiation was not one of them.  Things I would definitely want to do for 25 days: walk, teach, read, play Scrabble, watch Scandal, eat Twizzlers, and drink Diet Coke.  Instead, I will begin my journey with radiation treatments on April 8.  The nurse warned me that even if I was sick, or had a flat tire (is this a common problem in Hawaii, because it’s happened to me recently?), or fill-in-any-other-excuse, I am to come every day.  I wanted to ask her if she was willing to help me get the flat tire changed, but she didn’t seem like that type.

Right now, it’s the calm before the storm.  I am feeling better post surgery, tooling around my block without gasping for breath, and I made it through three seasons of HBO’s Girls.  I have one more week before the 25 days start.  I finished my last Arixtra shot, but I still have more painkillers left.  So, for now, it’s one day at a time….

What are you thinking about for your 25 days?

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“Loaded for Bear”

The Urban Dictionary defines “Loaded for Bear” as to be prepared mentally and physically for extreme opposition; typically used in reference to an aggressive or potentially violent situation. Yesterday, as I prepared for my blistering .71 mile walk, my mother-in-law used this phrase-Loaded for Bear- to describe me (…except she said “ready for bear”).  This devolved into a family discussion about whether this phrase actually exists.   It does, and I am.  (I also spent most of the evening using the phrase in various sentences until I’m pretty sure everyone was tired of hearing it.) Which leads to the activities of this morning.  Today, I bent the needle taking the cap off my daily Arixtra shot and just went ahead and gave it to myself anyway-Loaded for Bear.

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