Tag Archives: ovarian

Grey Sky-Talking about Cancer

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Grey Skies Ahead

I recently spoke with a Mid-Pacific graduate, Matt Hoe*, whose father passed away in 2014 of colon cancer. I admired his courage as he fought through the grief of his father’s passing and turned that pain into an award-winning film. His words about cancer, which I first heard at a chapel assembly, were penetrating: “If I were to give you one piece of advice, it would be to learn that abstaining from saying that the sky is grey does not make the clouds go away. It just means that you don’t get to talk about the sky.” Matt’s words resonated long after I heard them. Each month I go to an Ovarian Cancer Support group meeting where women from all over Oahu come to share their stories of surviving and fighting cancer. Many of the women are many years removed from their initial cancer fight and some are still in the thick of it. Some are bald, some wear wigs, some have scraggly fine hair (that would be me) and some have pretty luscious locks. Each month we have newcomers struggling on that shifting sand of a new cancer diagnosis. Cancer is relentless, and there is always a ready supply of new patients.  We don’t have all the answers for each other, but we share our stories in hopes that our own personal experiences and treatment will give hope to each other. For me, it’s comforting to know that many are living fully having successfully navigated this beast.

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Teepee-We prop each other up as we share our stories

We are like a big teepee-each of us is a stick that props up the total structure. It’s our collective nature that makes us powerful. Recently, there was an audible gasp when one of the women shared that she was entering palliative care (palliative care is primarily focused on providing pain relief rather than searching for a cure). She spoke of her situation matter-of-factly and at the time, I wished I could hug her pain away. Being among this group of loving and supporting women can’t cure the pain (or the disease), but it eases the burden of having to carry grim information all alone. We are also there for each other’s joys and triumphs!

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Hand reaching skyward!

How many times have you thought about someone who is fighting a major health issue (whether cancer of something else) and were afraid to reach out for saying the wrong thing? Saying nothing is equivalent to doing nothingKnowing that others are there to support you is a type of palliative care in itself. Matt continued, “For those of you who feel a storm brewing, I tell you this: learn to talk about the sky, and those crinked clouds of emotion that so often choke your voice. Feel the rain on your skin. I know that it’s scary to be vulnerable. But trust me, It’s scarier to be alone when it starts to storm.” Will you be successful when you reach out to those who are suffering? Maybe or maybe not. It’s the reaching out to each other than connects us all together.

Matt’s words were so powerful and they need to be heard. “And for those of you who have friends caught in that storm, learn to listen.  You might feel uncomfortable when they open up to you. You might be afraid to say the wrong thing, and somehow make the situation worse. But more often than not, people just want to be heard. They want to know that someone cares about them — that someone will be there by their side. The most comforting words that I have ever received were, “I’m sorry that it’s storming over there. That really sucks, but I care about you, and I’m here for you.”

Take the time to reach out to your friends who are facing grey skies–do it now!

Please watch Matt’s video: Separateness is an Illusion

*Matt is a recent graduate and an aspiring filmmaker who hopes to tell people’s last narratives in film

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Are you still doing that?

The early thrill of a new habit wears off after about a month and according to Franklin Covey only 23% of people see their resolutions to completion. Any time someone says I’m never going to do “X” again, there is a part of me that wonders how long their forever will be.  When the doctor told me that my cancer treatment could be “forever,”  I wondered the same thing.  In college we studied Greek Mythology and Sisyphus (the man doomed for all eternity to push a boulder up a hill and then watch it roll back down again).  I wonder what his attitude was. How did he feel about it? Were some days better than others? Did he have coworkers with their own rocks to push up their own hills? Did they get together on weekends to commiserate over rock pushing? Did he try to get it done first thing in the morning or procrastinate till late afternoon? How do you handle those perpetual tasks that never go away?

Get this party started!

Today marks my 9th maintenance treatment of Avastin for recurrent Ovarian Cancer. I almost can’t imagine not seeing my doctor every 3rd Tuesday and my fabulous nurses Jacqui, Cindy, and Jodi every 3rd Friday. Jacqui is even in my “favorites” in my phone contacts. It’s like making the top ten of speed-dialed numbers!

I have my own little Ground Hog Day of doctor visits and treatments.

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Groundhog Day starring Bill Murray and Andie MacDowell

 I have a favorite chair!

Save my spot! Heated recliner chemo chair

And my own little TV and blankie!

Watching Living 808! They have TV up in here!

I told a coworker that I would be out Friday for chemo and she said, “Are you still doing that?” The answer is yes, but I’m pushing my “rock” in style. I may not get to choose if I push my rock but I get to choose how I’ll push it! We all have some form of rocks we’re pushing, but the trick is enjoy the journey. Plus, I get to see some pretty awesome people.

Pet scan time-“Eyes to Thighs”

So you want a Pet?

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Leilani Kitty-Our Pet

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

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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…

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Genoa Salame and Provolone Cheese-$4.99 at Safeway

And this…

 

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Salted Peanuts

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

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Watery water

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

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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.

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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.

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!

 

Get Your Burgers Here

There are a few moments in life, when you have no choice but to “live in the moment.” Vomitting being one those. I threw up 12 times last weekend, which was a world record for me.  My vomit-free streak lasted from November 16, 2013.  Like Seinfeld, I do keep track of these things.  Still not sure what caused the Linda Blair episode (which was accompanied by a migraine style headache) but I am praying it will not happen again.  I’ll get a chance to test it next Thursday when I have my next chemo.  Last Saturday seemed to be shaping up like a normal post chemo day….a little tired and a little nauseated.  I even took at short walk at 5.  At about 730 the headache came on and by midnight, I was revisiting my dinner (In other notes-I no longer like hamburger).  This weekend made me realize how fragile our bodies actually are.  One nurse said, “We are more delicate than we imagine.” I also found that neither Zofran, Reglan, or Phenergen really work once you really get sick.  Nothing does. More importantly, I found out that Nurse Jackie (my nurse Jackie) is there for me 24 hours a day as is my husband, who patted my back and made me feel slightly less horrible.  I also learned that when you throw up violently, you get a beautiful petechial rash on your face…..vaguely Howdy Doody looking.  If there is a badge to be earned with all of this, I think I earned it this weekend.  Still unsure how this weekend fits into the general side effects of chemo category, but I can guarantee you that I was completely in the moment!

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Your Results May Vary

My friend asked me what the chemo regimen was like each week, so here goes-

Wednesday: Blood work-checking for platelet and Red Blood Count.  Pack my bag for the chemo room which includes a pack of Twizzlers and a downloaded movie (nothing dark and depressing Lis).  Wednesday night, I am always a little nervous anticipating the next day’s events.  I know what it’s going to be, but I still get nervous the night before.

Thursday: Arrive at 730 so I can get one of the 11 chairs in the chemo room.  Sometimes, it’s so packed, there is very little for visitors.  Re-check of the blood work, if the numbers were not great from the day before.  First med is the steroids and the anti-emetics.  Takes about 45-hour to run that through.  I usually get a little tired during this.  Also, 2 liters of hydrating fluids get pumped through. (Today’s Movie was Shaun of the Dead)

Drug 2 is the Carboplatin.  The Dex (steroids) are to help with the nausea of this.  One of my chemo friends calls the Dex her 10 Little Indian drug since it makes her feel like she can do 10 things at once.  Carboplatin has the most nausea side effects.  Next treatment will be Carbo #7, so that means we have to start watching for allergic reactions.

Drug 3 is the Gemzar (Gemcitabine). This one goes through in 30 minutes and one of the primary side effects to this is rash and fever. I usually get a nice red face on day 2.  Combined with the steroids, I look like an Oompa Loompah on day 2 (Friday).  One side effect of Gemzar is thinning hair.  The other side effect is tongue and mouth sores…serious fun!

Drug 4 is the Avastin.  This is a drug that is supposed to stop the growth of new blood vessels.  I love this line from the side effect warning…

“Although some people may have a life-threatening side effect, most do not.” The life-threatening side effect? Yikes!

Once all is done, they disconnect the port and I head out!  I usually have some extra energy right at the end, so it’s a good time to run errands.  Crash time happens a couple of hours later.  But then, I usually have the insomnia the first night again. When I get Carbo, I have to take steroids for three days post chemo which messes with my sleep big time!

Most of my side effects seem to be nausea and fatigue.  Not very glamorous, but I just deal with it.

“Here I Go Again”

I was just listening the 80’s song…Here I Go Again by Whitesnake (nice rockin hair)…It starts out, “I don’t know where I’m going, but I sure know where I’ve been.” This chemo ground is not new in some ways and in other ways will be completely different.  Does knowing about childbirth make it easier the second time, or do you just dread it more because you really know what it is?  The song diverges from my path when it gets to the lyrics “here I go again on my own, going down the only path I’ve ever known.” I am not alone, so it should be “here we go again together,” but clearly that doesn’t rhyme as well.   It’s a lonely trail going by yourself, but I have family, friends, and faith traveling along with me.   Today when I walked into the chemo room, all my favorite nurses were there and a few old-timers too.  My friend Izzie has been getting chemo there since 2012.  One friend called, another brought me flowers, and another sent pictures of a bunch of my teacher friends waving “hi.” I never felt alone.  I told someone that I feel like I have 10,000 hands holding me up and carrying me as I start back in chemotherapy.  I couldn’t do it without YOU! (yes YOU!)

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Blood doesn’t lie

Each cycle of radiation or chemo is followed by the inevitable blood draw.  It takes about a week for the CA 125 Ovarian Cancer marker to come back.  Other blood markers are available in just a few days.  Every time they take blood, I wait anxiously for the results.  The last CA level blood marker was the harbinger of recurrence.  Even “normal” values can cause fear if they double or triple for the previous draw.  This go round, the hospital is using a new lab, so the numbers can’t be compared to previous values.  There is no joy or heartbreak associated with this number; it’s simply a number.  The plan, unless there is some anomaly is that I’ll start chemo next week.  Happy to be down with radiation, but remembering the trek that was the last chemo journey.  This time will be new drugs, which inevitably means new side effects.  In the meantime…trying to get healthy and recommending these documentaries on #NetflixMortified Nation, Queen of Versailles, Girl Model, Russia’s Toughest Prisons, Fat Sick & Nearly Dead. 

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The Flying Nun

Do you remember The Flying Nun-a TV series in the late 60’s and early 70’s? Along with The Brady Bunch and The Partridge Family…and of course Gilligan’s Island, these made up the favorite TV shows of my youth.  My sister-in-law took this picture of me getting set up for radiation and it brought back memories of Sally Field  as Sister Bertille, the nun who could fly. (What you are seeing in this image is when they drape warm sheets all around so that you don’t freeze! They keep this room mighty chilly.)  I promised my friend J. no belly shots, so you don’t get to see that.  I know you’re disappointed.  So, what are the tv shows that bring you back to childhood?

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Endurance

I always go back to distance running when I think about my cancer journey.  A long, long time ago, I ran track, and then for a time in my 20’s I tried/and successfully completed a triathlon.  The route ahead of me is arduous and somewhat reminiscent of my younger training days.  I have a total of 25 radiation treatments that will launch immediately into 4 months of chemotherapy (with a few weeks off for good behavior in July).  So, what does it take to do an endurance event?  First, the right state of mind.  When my children were little I would read them a book called Those Can-Do Pigs.  The message of the book is that there nothing that is impossible!  When I teach Physics, I tell my students that we have so much information that it is almost impossible to cover it in our course, but that it can be done one step at a time.  I tell them  that we will eat that elephant one bite at a time….and we do (Refer to the man who ate an airplane). Your belief in your ability to finish is key!  If you think you can’t, you can’t.

According to my daughter’s 1500 meter track coach, Coach Jimmy, you need to set the pace right off the blocks.  As I am 8 radiation treatments into 25, I can say √…to that.  My side effects at this point are some fatigue and nausea, similar to training days of the past but nothing unmanageable.  In a cancer race….good nutrition, rest, and exercise are all part of the training process.  Sounds easy, but not always so. It also helps to have some motivational quotes and faith to bolster your race. The hardest part in a triathlon (for me) was coming off the bike and then running.  I love this quote…”Running after riding a bike is different from running on fresh legs. Prior activity makes you feel heavy-legged and uncoordinated when you start running.”   My guess, and it is a guess at this point, that chemo directly after radiation is harder than just going directly at it.  I have a bonus in that my doctors and chemo nurses are amazing!  Plus, this is not my first time in the cancer race.  Race experience in both traithlons and chemotherapy is a bonus.  Just like in traithlons, it pays to have a race strategy!  I am pretty sure Coach Jimmy also said to end strong!  That’s the plan!

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