I was diagnosed with Stage 3C Ovarian Cancer in August of 2012. Surgery and 16 chemos later, I was declared NED (No Evidence of Disease). I recurred in February of 2014. Another debulking surgery, radiation, and chemo have followed. Here to help you navigate the ins and outs of self-advocating as a patient! Powerful help to those in need of guidance!
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!
I’m always wondering where I can find extra time in my day to do the things that make me happy! Wondering where all my time went, I recently downloaded the Life Cycle App. This app gives you the ability to quantify that question of.. where does all my time go?
My life Cycle App tells me that I spend between 1 and 1.15 hours a day commuting back and forth to work. Not actually breaking news, but this became food for thought.Specifically, what could I do with all that commuting time in #hitraffic.
Here is a typical day (the app automatically tracks your movements-no need to input data)
Here is a one month break down:
Then, my sister sent me an article suggesting that if we disconnected from social media by a bit, our productivity could increase by leaps and bounds.
According to better human’s blog post, it’s all about creating new habits!
“Getting good at habit formation took me years….One game-changing idea from a good book is worth thousands of dollars. If a coach helps you read ONE more good book a year, you already get your money’s worth.”
But wait, what if it’s an audio book, or a podcast?
I’d like to share with you some of my favorite podcasts that motivate and inspire me!
One of my favorite quotes from Robin Sharma…” Problems are servants. They help you grow and lead to better things, both within your organization and in your life. To resist them is to avoid growth and progress. Embrace and get the best from the challenges in front of you. And understand that the only people with no problems are dead.”
What do you do that motivates you? Share out in the comments section. Please share and subscribe.
FODMAP UPDATE : Day 10 of the elimination diet. Evidently apples are bad. No migraines for two weeks and no guy issues for 10 days. This might work!
Excuse me? Apples are good for you! An apple a day keeps the doctor away.
Well, not for you….along with a million other things you think are healthy.
People with trouble digesting fructose in the large intestine must several limit all FODMAPS (short chain carbohydrates). FODMAP -had you even heard of this? Plus, it’s not just the food, but the volume of food. A bite of apple, some Falafel, and buttered mashed potatoes all together…not good. I can attest to that!
That’s the story so far. Causes? Radiation side effects, scar tissue, or IBS. Those are the three they are throwing around. I guess it doesn’t matter which it is because the results is the same. Lower left quadrant pain, bloating, constipation and diarrhea…Oh My! You pick. They are all junk. I have always known certain foods bothered me, so maybe it’s been there forever. After consulting with the experts-my oncologist, the gastroenterologist, the nutritionist, my husband, my sister, my co-worker, my walking partner, my mother and mother-in-law, I have decided to move forward with this diet in hopes that my symptoms will abate.
Back to Tripler hospital…
Game day for me starts today with a colonoscopy and then the FODMAP elimination diet. One aside on the colonoscopy….it’s somehow possible to gain weight during the colon prep. I can only assume it’s from the salts in the OSMOPREP Phosphate pills. But seriously? Ridiculous. I thought evacuating the colon was good for at least 5 pounds. Someone lied to me. Have you had a colonoscopy yet? What prep did you use?
The FODMAP Elimination Phase-eat nothing….Just kidding! There is lots to eat, kind of.
Allowed: banana, rice, corn chips!, carrots, fish, beer, wine, cheddar cheese, strawberries, blueberries, zucchini, creamy peanut butter to name a few. Oh, wait…pickles and olives
Not Allowed: bread, pasta, flour tortillas, milk, broccoli, cauliflower, asparagus, beans, yogurt, onions, garlic, and more!
Two weeks on this and then the Challenge Phase…to be continued.
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!
They call Ovarian Cancer the “whispering” cancer. The symptoms are quiet but persistent.
Wear your Teal on Tuesday! Open a dialog. If someone you know has persistent digestive troubles, nausea, bloating, bowel, or bladder issues, be persistent in getting them to see a doctor! Ovarian Cancer often presents as vague tummy trouble. Ask your doctor for a CA 125 test. CA 125 is the Cancer Antigen marker in your blood that indicates something may be awry.
…author at the Honolulu Star Advertiser and told her my story. One of the questions she asked was, “What instigated you to start your blog?” Honestly, the first time I battled in 2012 and won, I thought it was one and done. I thought I could walk away from cancer.
Turns out I thought wrong.
In 2014, when it came back again, I realized that I needed to share my information with others fighting the disease and anyone who wanted to understand the battle against cancer-plain and simple. I chose to share my experience so others could learn from it.
I celebrate because you cheered me on…because we made it through to the other side…because even in negative things there is a positive result! At my recent appointment, my oncologist mentioned (and seemed surprised) that I’d beat the odds …..but he doesn’t know the team I have! (FFF-Faith, friends, and family!)
People ask, “What do you get for your 4th anniversary?” (I saw this on Google, so I know this to be true) …Hallmark suggests fruit/flowers or juicers appliances. That’s great for marriages, but how should you celebrate cancer, or being free from it? Is there a correct day? Should I turn it over to Miss Manners to decide? Some choices:
The day the you get gobsmacked by the doctor with the untimely advice that despite your healthy lifestyle you have stage 3C cancer? (August 6, 2012)
The day they remove the cantaloupe muskmelon sized tumor that was nestled inside your healthy body. (August 16, 2012)
The day the doctor decrees you to be #NED (No Evidence of Disease)…Woohoo! (May 30, 2013)
The day it comes back and you have to do it all over again….surgery…chemo…radiation….humbug (Definitely not this one!) (February 14, 2014….yes, Valentine’s Day!)
The day you get the next all clear! (completed one year of maintenance doses)(October 6, 2015)
So I have officially chosen August 16th, 2016…four years from my first surgery…Melon Day! My “fruit” anniversary!
I saw a pair of sneakers while trying to avoid political commentary in my Facebook feed by a company named Skicks. They create Ovarian Cancer and Breast Cancer shoes that help raise awareness. I thought that was the perfect 4th anniversary gift to myself!
I was diagnosed August 6, 2012 with Stage 3COvarian Cancer and now almost 4 years later (3.789 years but who’s counting?)…I am watching my son graduate. Two surgeries, countless chemotherapy infusions (Carboplatin, taxol, Gemcitabine, and Avastin), and 25 radiation treatments, but our family finally made it. There are no words that can completely describe our joy…so I’ll do it with pictures.
Friday, May 27, 2016-Baccalaureate Service Central Union Church
May 28, 2016, the Big Day arrives-“light” showers and then sun on campus
In the words of AJR….”I’m Ready”
The stage is set….to hear “Benjamin Robert Roley”
Finally, the fun!
and more friends…
And sister Rachel
Mom and dad…
Traditional Lei giving Post Graduation….Grandparents…
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.