Category Archives: ovarian cancer

How do I talk to the doctoR-Guidance from a survivor?

Closer to Fine

“I went to the doctor”…..how do we get “Closer to Fine”-Indigo Girls 1994

Waiting room Hawaii Pacific Neuroscience

What do you think about in the car on the way to the Doctor’s Office? Usually, it’s Insurance Cards,Identification, parking validation…but the most important thought should be, Did I bring my notebook of questions? I would argue that the partnership with your doctor is the essential aspect in your medical care. I’ve found repeating questions over-and-over in my head has proven unsuccessful (and stressful). Unless I write it down before I arrive at my appointment, it’s like a trip to Target…”What was I going to get?”

My notebook goes everywhere with me!!

Bullet Journal 2021

Establishing a partnership in your care enables you to have more control in your treatment. Each time you walk into a clinic or hospital, bring your notebook and bring your questions. I start each appointment by telling the Doctor that I have some questions…followed by…would you like to see them now or after the exam? If this is intimidating…hand your doctor the written list of your questions.

Tripler Army Medical Center Mountainside Entrance

Knowledge is Power

cientia est potentia” -knowledge is power. The more information you have regarding your specific medical condition, the more you are informed of next steps you might take to becoming healthier (closer to fine). There is a caveat to this and I won’t lie…I spent some time looking up Survival rates for Stage 3C Ovarian Cancer. That was sobering. I don’t find fear to be very motivating, so I looked at the positive aspects of my treatment. Good medical care makes all the difference. Don’t sit in the back seat! (Arrested Development-Buster-“I sit in the front seat now!”)

“I sit in the front seat now!”

I chatted with my oncologist, Dr. Dietrich (who is now at the University of Kentucky Markey Cancer Center) to ask him his advice in all things doctor related. One of the very first things he said to me in 2012 was, “You are not a statistic.” The cancer statistics are actually at least 5 years old and the treatments have improved markedly since those statistics were published. I recently asked him a few questions regarding Ovarian Cancer treatment.

One, which is particularly relevant now, “What is the role of telemedicine?

Telemedicine

Covid-19 has brought an increase of telemedicine appointments. The bonus of this is reduced exposure to germs and easy access to the doctor. When is this most beneficial-When an actual exam is not necessary and you are reviewing scan results and discussing treatment options. I have found those check- in appointments to be so much more convenient via the computer. Plus, no parking and validation worries.

What about Exercise?

I walk when we and wherever I can! For me, exercise and a healthy diet give me a sense of control over my well-being. It’s also a huge part of my Relentless Forward Motion mantra. My 87 year old dad says, you gotta keep moving to keep the old man (or woman) out!

The National Cancer Institute recently shared this information on exercise:

How would you describe the state of what we know about the role of exercise for people with cancer and for long-term survivors?

In the past, clinicians typically advised their cancer patients to rest and avoid physical activity. However, what we learned from early exercise research in the 1990s and 2000s contradicted that advice. In fact, the field of exercise oncology—exercise and cancer—has grown exponentially in the past decade. There are more than 1,000 randomized controlled trials in this field. Multiple large epidemiologic and preclinical studies have also been completed, all of which have expanded our knowledge. 

Advice-It’s okay to ask….what would you do?

Doctors want a beneficial outcome as much as you do. They want you healthy and able to tolerate treatments. Can you ask for second opinion? The answer is…yes? Being comfortable in decisions moving forward is key! This is great news for patients who want to sit in the driving seat of their treatment!

What is the best question you ask your own doctor? Share in the comments!

Melekalikimaka 2018!

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Christmas in Hawaii

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!

Ross's family and Chris
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.

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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?? 

My Poem for Dr. Dietrich

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!

I wrote a poem

Dr. Dietrich-the cancer doc

helping patients with their fear and shock

his most helpful phrase-“I’m not worried”

kept me from feeling flustered and hurried

each appointment began with a little chit chat

I know I’m really going to miss that

He leave us now with his beautiful wife

off to Kentucky…for a brand new life

forever he will stay in our hearts

cancer’s got nothing when he gets to start

with every person he’s walked a few miles

always kicking it Dietrich style!

for me he’s the best..there is no second

my own super hero, my own secret weapon

Dr. Dietrich-

thank you for all you have done

I actually think we did have some fun

Much Love,

Kym

Port of call-for the Port

This is the final port of call-for the port. Time to scuttle the metal that has traveled with me for over 5 years. It served its purpose, delivering life-saving chemo drugs (Carbo, Taxol, Gemzar, Avastin, and various  blood draws. My last PET Scan showed good news…no hyper metabolic activity. (broken rib from falling/coughing? …but no cancer)

I don’t know why….but that was it.

Dr. D and I agree it was time for my little friend to go.

I was thinking about Neo in the Matrix (go to the end of the scene-worth it!):

 

But the doc assured me it would not be that traumatic.

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Pre-Removal

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Pre-game Positivity

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The critical care sign was a bit dramatic

Finally, it is out! I think a necklace would be a good plan! My Trophy!

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Power Port-cleaned up

Thanks to the Kym Roley Support Team (KRST) who waited in the freezing waiting room (Ross, Lesli, and Ben.) Ben and Lesli made me a little brekkie when I got back home.

In the Book Thank God It’s Monday, Roxanne Emmerich says, “I don’t care how many hours you work, how many obstacles you hit. Just show me the baby-I want to see the result.”

The Result is now! Time to focus forward!!

Each year I choose #OneWord to focus on for the following year:

2014-Mindful

2015-Excellence

2016-Presence

2017-Survivor

2018-Service

 

What is your One Word for 2018?

Health is the Crown

Health is the crown on the well person’s head that only the ill person can see.”-Robin Sharma

From this…

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Medications, masks and chemo

To this…

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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!
  • IB Coordinator position and USAFA liaison
  • Walking partners!
  • ENERGY!

I’m so excited for what is yet to come!

 

Fight Club

First was the  shock

Hit by a truck

Statistics grim

Prognosis-yuck

We fought together, you and I

Persistence, humor, a dollop of grit

Defiant battle cries as we took the hits

Some came and fought a battle or two

Many the whole time…the one’s like you

Round two-a surprise…..I’ve often asked why

A protracted war…it made me cry

Our fight club continues in this roundabout way 

We lost another sister just the other day

“How can you go-it’s just so sad?”

But being with these women actually makes me glad

They never give up

Play on

Play on

Radiant faces in various stages

Fighting the ravages-cancer’s wages

Support and prayer

An idea or two

These women in earnest

Elevate you

What is your fight club?

Where do you go?

Who are the people who raise your bar?

I think if you’ll look it won’t be too far.

Health update! #ovariancancer

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)!

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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

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“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!

Pet Scan Prep (24-hour Countdown) Plan your diet and wardrobe now!

Preparing for Christmas in Hawaii is fun!

Decorate your tree and sit back and relax…..and wait for your medical appointment!

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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.)

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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 PescetariansCancer 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!)

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Fresh Oahu Ka Lei Eggs-Delicious!

T-21 Morning snack-hummus and veggies (no fruits–way too much sugar)

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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!

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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!

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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!

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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

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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?

Cancer treatment-Top 6 Life hacks!

….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….

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Radiation Treatment at Tripler Army Medical Center

Or this…

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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.
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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!
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3.  Start a bullet journal
-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!
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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.)

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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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Now!! Spread the word!

Mele Kalikimaka

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.

Mele Kalikimaka to you and yours!

Stay tuned in 2016!

From this…

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PET scan at Tripler Army Medical Center

to this…

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Shopping at Pearlridge Center-Hawaii