Great news!! (definitely worth two exclamation points) Another clean PET scan! Diagnosed in 2012 Stage 3C…Three and a half years later…2 surgeries, countless chemotherapy infusions, 25 radiation treatments and a year of maintenance. Finals are graded and it’s time to enjoy the family and a much needed relaxation time.
A few decades ago What’s Up? was one of my favorite songs and it accompanied me on many a walk?
….”trying to get up that great big hill of hope…for a destination”
I am so close to my destination! Two more maintenance treatments of Avastin left! Trying to take a breath and reflect on it all. The ubiquitous “Journey” doesn’t quite do this process full justice. It’s been three years since I heard Dr. D introduce himself as the Cancer doctor…Three years since I met the amazing nurses Jackie and Cindy.
I’ve had two surgeries, 25 radiation treatments, and countless chemo treatments (Carbo, Taxol, Taxetere, Gemzar, and Avastin). Don’t forget the two Ovarian Oncologists, one rheumatologist, one neurologist, one Radiation Oncologist, and a sprinkle of radiation from MRI’s and PET scans. Three years since family and friends rallied around me with support in all forms to beat this nasty disease.
Today, I do wonder why I am still here when many of my “cancer” friends are not. I couldn’t come up with an answer to that question, but I know that I’m thankful for my luck. I do think my positive attitude has made a difference in my survival. I’m grateful that I have an opportunity to have time and health to do the things that matter to me.
I took that thankfulness on the road this summer with a family trip to New York. If you look carefully in the picture below, you can see The National September 11 Memorial and Museum. The view from One World Trade Center is amazing, but you can’t help but look down at the emptiness that was once the footprint to the Twin Towers. New York City was buzzing all around us, but nestled among busy blocks is an oasis.
What fascinated me was the story of the Survivor Tree. This is the impossible story of survival of a single tree that was crushed beneath the rubble of 9/11. This was the one and only tree from the plaza that survived. The tree was nursed back to health and is itself a story of perseverance and resilience. As a side note, it survived Hurricane Sandy as well. That is one tough tree!
The take-away lessons for me and although I am a little weathered, I keep going. The permanent issues are livable, so I live with them….and survive. My message?
Don’t wait till you get sick to remember what matters
A “can-do” attitude is a much needed prescription for any struggle
When you get knocked down, get back up, and then do it again. Repeat as necessary.
What are you reflecting on in your life right now?
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.
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!
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 nothing. Knowing 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
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?
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.
I have a favorite chair!
And my own little TV and blankie!
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.
“I thought you would have something fascinating to say about Cancer.” Someone said this exact phrase to me (in writing) and it took me aback. But it’s true, I have nothing more profound than anyone else to say on the subject…except… that I have been there and done it. I don’t have the exact combination of cancer fighting drugs or herbal supplements, but I am a work in progress, learning as I go. I do have a lot of experience. If there were badges for surgery, radiation, chemotherapy, side effects, ongoing medications, neuropathy, vomiting (don’t forget vomiting) etc., I would have a complete sash. Getting sick doesn’t make you a “sage on the stage” or a life guru, but it does help to ease the path for others that are getting that cold shock of meeting an oncologist for the first time. I don’t have the cure for cancer, but I am there for those that are going through a similar events with themselves or a loved one. I can share my story and bring you along with me. I have first-hand experience with things that I never wanted to experience in the first place.
No one expects that they will get a life threatening disease. Would you handle thing similarly? Maybe, maybe not. I am simply the guinea pig that you can study and the friend you can support and pray for. You can use this article as a catalyst to ask yourself, what am I doing in my life that I want to be different. Lots of advice leans to “live in the moment” variety, but that moment-to moment living is harder to maintain than you might think. When planes are landing and taking off is when I am completely in the moment. Whether well or sick, the cat still needs to get fed and the oil still needs to get changed on the car, and someone needs to do those pesky taxes. I still get frustrated with traffic and people that take up the whole aisle at the commissary (why?). But above all that, I know the overwhelming support and love from friends (and strangers too) that has buoyed me when I have felt down. I have new networks of friends that evolves constantly including a wonderful Ovarian Cancer Support group. People I might never have met in my previous life have now become friends that I can count on for advice.
This weekend I found out that a former student had recently committed suicide. He struggled in middle school as an outcast and left the school I was teaching at under cloudy circumstances. Eventually, the family moved to a different state and I hadn’t heard anything about him until I saw the obituary. Many people tried to help him when he was a troubled 13 year old. At 16 years old, he decided that life was too painful to keep on living. Today, I am contemplative. Did he continue to turn away from help? Were others trying to reach out and connect with him? I pray for his family as they try to go on with their lives. My goal as a teacher is to reach out to each student individually, wherever they are in their “journey.” With my blog, I try to reach out to those who are struggling with the entire baggage that is Cancer. Some are just here to support and be supported, and others for advice. Fascinating? Probably not, but hopefully, helpful.
No pictures today, just thoughts. We are all here together.
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.
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.
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.)
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.
One of my students showed up to summer school class every day with large over-the-ear headphones listening to this song by Skrillex and The Doors-Breakn’ a Sweat (a largely repetitive, but somehow catchy electro/dub step song-you probably will not like). But, this song was in my head as I trained for the Great Aloha Run of 2015.
I wasn’t even sure I could do the 8.15 mile Great Aloha Run (and just to clarify, I am talking about walking it, not running). My friend said multiple times, “you can always back out if you are not up to it.” My plan was to just get up and get out there and see what happened. Up until Monday (race day), the longest training “run” was a 1.5 mile walk. In keeping with my 2015 goal of becoming STRONG I felt like it was important to at least get myself out of bed and get down there and try. My January training was stymied by a mega migraine that put me back several days (See Professional Vomit Queen). We woke up extra early to make our way to the Starting Line. I stood on the corner watching the sun come up with my little team of two (Debbie and Ross). We stationed ourselves at the back of the pack along with the wheelchair participants and stroller moms and watched the sunrise reflected over Aloha Tower.
Twenty thousand people had the same idea I did and were out there for the Great Aloha Run! Interesting side note is that many more were registered and just didn’t show up. I am sure they had many good reasons, but come “game day” it didn’t happen. This is what the front of the line looked like (or so the newspaper told me).
Despite a bad knee (Debbie), a bad calf (Ross) and sore hips (me), we finished! At one point, I jokingly said, we should do the Honolulu Marathon in December. This idea was introduced around mile 7, so the enthusiasm for it wasn’t as high as I had hoped.
We completed the race in 2 hours and 25 minutes. Plus, when you add the time and distance to get to and from the start and finish line…we totaled 9.73 miles!
When my own children used to agonize over writing essays for English class, I used to tell them…It doesn’t have to be perfect, it just has to be done. Words on paper are better than no words at all. That is how I felt about this race. We could have been a lot faster and trained a lot more, but we still got out there and did it. Plus, we were together, which made it all the more fun!What’s my current situation? Still plugging away at maintenance chemo every three weeks. I had treatment yesterday and slept 12 hours straight in recovery last night. Still teaching! Still doing!
Warning: Not for the squeamish. Step away if you have a weak constitution. Migraine sufferers will agree that migraines are no ordinary headaches. Unlike a broken arm, there is no visible indication that your pain level is through the roof. Taking regular pain relief for migraines (for me) is like putting a dropper full of gas in the car and thinking it will take you somewhere . Migraine relief is a much more complicated dance than that. A careful combination of prevention and treatment is my only solution. I should have known the stress of this week was going to trigger a headache, but I always naively believe that this time it will be different. (Remember the movie 50 First Dates? I am like the Drew Barrymore short term memory loss character.) I shouldn’t be surprised when they happen and the route they will take, but it always catches me off guard. I choose to not think that it is stupidity, but rather optimism. Every migraine trail I take leads to the porcelain dumping ground. (I was going to add a vomit image, but that would just be cruel to all of us, so instead, I’ll add the movie poster) When the headache ends, it is like a long journey completed.
I should be happy that I’ve only thrown up three times in January. One of the side effects I appear to be having from the Avastin treatment is sporadic migraine headaches. The first sign of the headache is a piercing high pitched frequency pain in the back of my head. (It feels like the frequency only dogs can hear that drives them crazy) Then the pain shuffles from back to front and back again. I sit with an ice pack on my head and I speculate how long it will take till the vomit train begins. Today, I made it 45 minutes. Something about vomiting is cathartic (haha! Really! At least I made myself laugh) It’s like my body realigns and resets itself after that. The trick of getting the pain to go away lies in a careful distribution of Migraine meds, anti-nausea meds, and vomit.
Last time, it was after a fantastic meal of Baked Ziti (which I used to love…I’ve attached a recipe in case you still love it.) That time was the first time that I threw up through my nose. I had a noodle come out my nose. I guess there is a first for everything.
My sister was visiting us that time, and the next morning she asked if I had been coughing during the night. Yes, I “coughed” a lot that night. It really was good ziti, more so going in than going out. Sadly, I don’t see myself eating anymore Baked Ziti in my near future.
I have recently swapped out Imitrex for Maxalt in the quest to find more effective pain relief. I think the Imitrex works for me, but when it gets thrown up so soon, not as much. Maxalt can dissolve under your tongue and sneak up on the migraine before the vomiting begins (but dissolving pills under my tongue is slightly nausea inducing too). I always wonder at what point does the pain medication count. In other words…If you take a pill and throw it up 15 minutes later, has that pill been ingested into your system enough to work? Or, do you assume it hasn’t and does again.
Today’s headache infused my dreams and woke me with a jolt this morning.
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.
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.
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?