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!
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…
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
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.