The question was…Do you call on Friday afternoon and possibly get the bad news, or wait until Monday for that same possibly bad news? Is knowledge power? Or, do you shift your paradigm and call as soon as humanly possible and hope for the best of all news? My philosophy during this entire “journey” has been “head down and power through.” I’m happy to report that my cancer number (CA125) has actually dropped from a brief uptick last month. Good-to-go until the next test in 6 weeks (which in itself creates its own form of stress)!
One of the concepts I’ve throwing around in my head is the idea that our health is not binary. We are not just a “0” for everything is perfect, or a “1” for everything is fail. You’re never “just sick” or “just well”- there is a large continuum in which we all fall.
“Just as we like to imagine that the mind and body are separate, so we imagine that at any one point in time we are healthy or we are not, and attitude that brings unexpected consequences. When we are healthy , we imagine we don’t need to pay much attention to our health. When we are sick, we imagine that we should be able to find expert information that cures us.”
It’s tough to live in the moment…neither speculating ahead or reflecting back, but right now, that is exactly where I am. Savoring this great moment! Thank you all for your continued well wishes being sent my way!
Decorate your tree and sit back and relax…..and wait for your medical appointment!
Preparing for a PET scan can be just as painless. Future you will be happy if you’ve planned ahead. Plus, if you don’t prepare properly, there is a possibility they will reschedule the scan! As usual, all my advice comes with the warning to check with your own doctor!
Let’s talk about preparing for a PET (Positron Emission Tomography) It starts 24-48 hours before the scan. The actual scan calls for injecting a radioactive tracer into your bloodstream and waiting to see where there might be areas of unusual metabolic activity (like Cancer) The PET takes place in Nuclear Imaging rather than Radiology. (I have addressed the day of PET in a previous post, but I’d like to focus on the 24 hours prior to Pet in this post.)
The PET starts 24 hours before the actual scan with a sugar free diet (as much as possible) to starve all the body’s cells of sugar. For me, it’s like the Atkins diet for Pescetarians. Cancer cells love sugar! Well….all cells need sugar!
Here is your twenty-four our hour count-down for diet and wardrobe:
T-24 Breakfast– scrambled eggs and coffee (enjoy that coffee because you don’t get it on the day-of treatment. No OJ either!)
T-21 Morning snack-hummus and veggies (no fruits–way too much sugar)
T-20 Lunch-spinach salad with the lowest sugar dressing you can find (Blue Cheese or Caesar) and hard boiled egg and cucumber.
T-16 Snacks! Lightly Salted Almonds!
T-13 No workout today-you don’t want to strain any muscles before the scan and accidentally cause a false positive. Some websites suggest not to exercise 48 hours before scan. Check with your physician.
T-11 Pack a small bag for the scan room. Usually chilly, I bring a sweater that I can wear in the scan and warm socks. No Metal anywhere though! Women, I wear a tank top under my clothes so I can wear my own clothes rather than a hospital gown. Bring something to read or your Bullet Journal for planning or a book (The Light Between Oceans by M. L. Stedman will transport you from whatever you are doing!) . I usually don’t bring an iPad. I don’t like to leave it in a locker and the hospital is not responsible for your valuables. Leave all jewelry at home!
T-10 Dinner-Salmon plus stir-fry mushrooms, zucchini, red pepper-Dessert is fresh watermelon. Did you want wine with dinner? NO-cannot-no alcohol!
T-8-Sleepy-time! Get plenty of rest the night before. No time for insomnia…(we’ll do that in another post!)
T-4 Sorry, no breakfast today. No Coffee either! Get over it! It’s for a greater good. Drink plenty of watery water this morning. You’ll want to wash that radioactive tracer out and dehydration is no fun. Wear comfortable clothing today! Today, it’s okay to wear yoga pants or leggings and a t-shirt or sweater. Steer clear of zippers and metal attachments. They cannot enter the machine and then you’re back to wearing a hospital gown.
T-2 Blood test to see if your blood sugar is in an acceptable range. This is like the lie detector test to see if you consumed too much sugar in the day prior. Safe range is 80-150 mg/dL
T-1 Injection time-the tracer will need 45 minutes to circulate through your body. Some doctors allow reading and/or listening to music, but the policy at our hospital is do nothing. I usually fall asleep in the comfy chair while waiting
Finally!-Scan time…Relax as they roll you into the tube. The tech will position you and ask if you’re claustrophobic (little late, right? I would ask your doctor for meds prior, if this is something that bothers you.) I work on meditation skills while I’m in the tube.
Then, done! Time to go out for a meal! Results are not immediately available.
What is your favorite book to make long waits short?
….So, you or someone you care about has been diagnosed with Cancer….now what? Remember how you made all those plans on January 1 to get organized? This time, it’s real. Successful treatment means being your own best advocate. It means getting the best information and the best treatment you can possibly get. This is not the time to be a shrinking Violet,afraid to offend-you must speak up. Your survival may depend on it!
Before you do this….
1. Buy this book….(I read it both times I was diagnosed with Stage 3 Ovarian Cancer)
Cancer: 50 essential things to do Cancer 50 Essential Things by Greg Anderson. Practical and important advice for the newly diagnosed and those recurring.
Get your major appointments, scans, chemotherapy treatments, radiation treatments, and tests written down in one location. You may need it in a year from now or two, or three, or 10! I like a three year calendar or even a five year calendar, because I plan to be around a long time! Miles Kimball Three Year Calendar or go big and get a five year calendar!
This is only for big ticket items…not daily symptoms or questions. Dream big! You plan to be around for a long time!
-Keep in this your list of questions for upcoming doctors appointments (even when they pop into your head at 3 in the morning!)
-Track side effects from chemo and medication
-Migraines? Track the onset symptoms and medications that work
-Find those motivational quotes that keep you going!
-Track exercise! (Yes, you still have to exercise.)
4. The American Red Cross gave me an accordion folder that I keep paper test results and informative literature and paper copies of articles on the forefront of cancer research. I used to print off articles and ask my doctor about them at appointments.
5. EVERY time you see your doctor, ask for a copy of your lab results. Every single time!
6. Don’t be afraid to ask for a second opinion! Doctors expect it. This is your life!! Take ownership of your treatment. Shed that reticence to be “that” patient. Ask for information from your doctor on why he/she wants to do specific tests and what he/she hopes to learn. Your strength comes from your willingness to speak up!! This may be your only chance. This is not a polite dinner party, but it is your very existence!
7. Bring a friend or family member to your appointments with you. Your friend can take notes and ask clarifying questions. (Bring that low maintenance friend who is happy if you talk all the way to the appointment, or if you want to be silent the whole time.)
This month is Breast Cancer Awareness and last month was Ovarian Cancer Awareness!
Please share this valuable information with your friends and family. Someone might be waiting for this article right now!
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.
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.
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!
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?
One of my favorite magazine (and now internet) features has always been the “Where are they now?“ segment. Something about being in the dark with zero information regarding a person, and then “BAM” right back into all the nitty gritty of their lives-some interesting, some bizarre, some tragic…….is so compelling. I thought I’d take you on a little Where are they now? trip.
1. David Cassidy-former star of 70’s show The Partridge Family and frustrated hard rock musician (I learned that in VH1 Behind the Music) in a pop music world has plummeted to the world of drunk driving in NY, garnering what appears to be a second DWI (the first from Florida).
The rookie cop evidently didn’t recognize the former teen heartthrob. (I think I would have.) Let’s hope he’s back on track now!
2. Mary-Kate Olsen My kids were fan of the twin powerhouses (to include Ashley Olsen) from the television show Full House. The favorite movie of our family was I am the Cute One. You can find this gem on http://www.youtube.com
Now, she has a jewelry line that makes a BILLION dollars in sales a year.
3. Haley Joel Osment Evidently I was not the only one who wondered whatever happened to the Sixth Sense boy. ABC news had a recent feature on him with this photo (and article)…What?!? That’s Haley Joel Osment? He is still making movies and currently is filming a movie in which he pays a Nazi.
4. Walter Cronkite-As a child I used to watch the CBS Nightly News with my parents and listen to Walter Cronkite say, “And that’s the way it is.” Sadly, he passed away in 2009.
I could spend hours searching the internet and dropping down a rabbit hole of information, but I wanted to share with you one that recently stuck with me.
5. Diem Brown–You may or may not know of this reality TV star who made her mark in the show MTV Real World/Road Rules Challenge. What impresses me so much about this woman is that even though she diagnosed with Ovarian Cancer at age 23, she fought relentlessly and optimistically against this cruel disease until she passed away at 34. If you follow Twitter, you may know that her last tweet (posted days before her death) showed her resilient spirit.
Her fight (chronicled in People Magazine) focused attention on this silent and slippery disease. Here is a reminder of the symptoms:
Common myth: Your annual PAP smear does NOT detect Ovarian Cancer!
Where am I now? Doing well! After a total of two surgeries, 25 radiation treatments, and 28 frontline chemotherapy infusions, I am undergoing maintenance Avastin infusions every 3 weeks to keep this disease at bay. In the meantime, I can be found teaching Physics to some pretty darn amazing students on most days!
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:
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?