It’s a beautiful 78 degree day in Hawaii! I’m sitting here with all the family around thinking how lucky I am to be alive.
I was recently contacted by Self Magazine for my thoughts and my advice for handling a cancer diagnosis. (You can read on the above link). If I could stress one thing to newly diagnosed cancer patients it would be that knowledge is power. Learning everything you can helps you be a better patient. I was lucky in that my Oncologist supported this. I was an equal partner in my treatment. There is a certain feeling of helplessness that comes with any cancer diagnosis, but taking control of your own personal choices is empowering.
Another critical piece of advice is to not stop being you! Where you can, get out and do the things that you love. For me, I was eager to keep working during my treatment because it signaled to everyone that I wasn’t going to just quit. While there were some super tired days, I am so happy with the decision. I was afraid if I quit work that my whole life would be consumed by cancer. I still have constant reminders of my treatment (neuropathy, arthritis, gastro issues, and a beautiful scar) but it is a small price to pay to be alive!
Summer of 2018
As we move into 2019, I am resolved to continue forward with a positive can-do attitude. Each year, I choose a one word goal for the year rather than a whole long list of resolutions.
My list of #Oneword from 2014 onward
My goal for 2019 in to be #impactful in all that I do. I’m already thinking about implementation of my #oneword for 2019! My runner-up word was #Reflective.
Thank you for following and sharing with you friends! What is your #oneword for 2019??
Have you heard the song, “Here I go again” by the 80’s band Whitesnake?
“Here I go again on my own
Goin’ down the only road I’ve ever known
Like a drifter I was born to walk alone
An’ I’ve made up my mind, I ain’t wasting no more time.”
Are you going it alone? You don’t have to! Giving help benefits both the recipient and the giver. Surveys show that cancer survival can improve with a support network (10 tips on how to survive cancer)…and a 25% increase in survival rates! I like those odds. The American Cancer Society rated my survival odds at 41% for five years. If you count the original year of diagnosis….I am in the survivor group! Yeah!
The two parts of support include offering help to those that are ill, and the ability to accept help that is offered. When you are sick, it’s hard to reach out to friends and family because you don’t want to be a bother. Share this article with a friend if they ask what they can do to help? When you reach out to someone who is ill, it’s hard to know what to offer that will actually be a help.
Here are some suggestions for way to help:
Offer to drive to an appointment or watch kids (many clinics don’t allow children)
Offer to sit with your friend during chemo (it’s pretty boring and more fun with a friend or loved one)
Make a meal! (Check with the family first for dietary restrictions. Kid friendly dishes helped my family immensely and took the burden of making a nightly meal off my shoulders.) Check out Take them a meal (this website is an awesome way to organize meal delivery for families).
Send a card-seems simple, but this is so uplifting when you are having a rough day.
Send a care package. It can be simple! Saltine crackers, cough drops, tissues….etc.
Send a positive text message. You got this! was my favorite one!
Call! Leave a message! Many times it is not a great time to talk, but hearing your friend’s voice is a cheery reminder that friends have not forgotten you.
Visit! (Don’t just drop in unannounced please! Set it up in advance)
Six years ago…I hiked Koko Head Crater for the first time…over a 1000 stairs…straight up.
At that time, I didn’t even know cancer was lurking in the wings…
Today, I had the opportunity to tackle the beast again. I went through the fire again!
From Leo on Trip Advisor “Some hikers throwing up on the side. View on top is great. Getting to the top gives a good feel of accomplishment.”
Koko Head Crater 630 am
After reading the reviews, I was apprehensive. Could I do it again after all the crap I’ve been through….surgeries…chemotherapy….radiation…?
The beginning was not too rough
The railroad-tie bridge is not for the faint of heart. I remembered that from before. The crab-walk seemed to be the preferred method for passing over the 65 railroad ties suspended above ground. Shirley, you would love this!!
The view from halfway
I’m pretty sure I was crawling for the last 100 yards to get to the top.
Finally made it-love me a fanny pack
Thank you Stephanie for pushing me!
Stephanie helped me get there! I only fell twice on the way down!
My oncologist-Dr. Dietrich-retires from United States Army today. He has been by my side for 6 years. Two times, he literally saved my life. I will be forever grateful to him for giving me more time to do the things I want to do in life. His kind manner has changed the way I see the medical profession. I am headed to his retirement ceremony now!
(Oh wait…that is for the Astrological Cancer sign)
I’m calling it. Over….done….owarimashta…hallas…finito
How do you know when the end is really the end? Actually, you don’t. Move forward anyway!
What to consider…
Yes, Cancer will always carry emotions….beginning, middle and end. Allow yourself to feel the emotions. Each time a new friend or friend of a friend is diagnosed or re-diagnosed, you re-live the shock and awe of the original diagnosis all over again. Even when it’s over, it doesn’t feel like it’s over. Making a clean break is a good plan. You may have to go back in the relationship, but isn’t it better just to be over and done?
How to keep going? Keep moving!
Get your port out!
What?
Yes, get your port out!
Maybe losing the port is like getting rid of crutches…
Power Port
Yes, it will leave a scar.
Yes, it is a minor surgery.
No, general anesthesia is not required.
When should we do it? December 22….Christmas gift!
We keep moving forward! Motivation is seeing my 84 year-old father fishing in 25 degree weather. #Neverstop
2018 will be a positive year of good health, family, and friendships!
“Health is the crown on the well person’s head that only the ill person can see.”-Robin Sharma
From this…
Medications, masks and chemo
To this…
Healthy!
Latest monthly blood-work shows my CA level (Cancer Antigen marker) has gone down to 6.0, the lowest it has been in over a year! I’m up for my 6 month mammogram in September (high risk for Breast Cancer).
Ten things I’m grateful for:
Travel-California, Oregon, Washington, and Mexico. Saw great friends, ate great food, drank delicious wine and Mexican-made margaritas
Friends-all of you who have been there by my side during this 5 year journey
Fight club-this rock solid group of supporters
Family-the whole crew! Most especially my husband and children. You have seen the good, bad, and ugly of cancer.
Faith-the many prayers from all over the world!
My Bullet Journal– a place to track all of my healthy habits-I’m now two years without eating red meat
#midpacific Five years ago on August 6, 2012, I had just started work and three days later was diagnosed with Stage 3C Ovarian Cancer. My school supported me through it all-the surgeries, the chemotherapy, the radiation, and recovery!
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)!
Is our health binary?
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.
Ellen J Langer says it much more artfully than I in the book Counter Clockwise
“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…
Tripler stairwell…original 1920 banisters
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 Christmas in Hawaii
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.)
PET machine at Tripler Army Medical Center
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!)
Fresh Oahu Ka Lei Eggs-Delicious!
T-21 Morning snack-hummus and veggies (no fruits–way too much sugar)
Prepping snacks (and lunch)! Hummus and veggies
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!
Resealable Blue Diamond 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!
Teal Tuesday Per Scan Wardrobe
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!
Salmon and water-melon
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….
Radiation Treatment at Tripler Army Medical Center
Or this…
Getting ready for Chemotherapy Infusion
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.
2. Organize!
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.)
-Track medications!
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.)
Hanging with the kids at treatment
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!
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