Category Archives: 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!

Supporting Someone with Cancer! A How-to guide

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:

  1. Offer to drive to an appointment or watch kids (many clinics don’t allow children)
  2. Offer to sit with your friend during chemo (it’s pretty boring and more fun with a friend or loved one)
  3. 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).
  4. Send a card-seems simple, but this is so uplifting when you are having a rough day.
  5. Send a care package. It can be simple! Saltine crackers, cough drops, tissues….etc.
  6. Send a positive text message. You got this! was my favorite one!
  7. 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.
  8. Visit! (Don’t just drop in unannounced please! Set it up in advance)
  9. Make a donation to Cancer research.
  10. Donate your hair! Wait, what? Very well health

    But where? Here are two!

    Locks of Love

    Pantene Beautiful Lengths

 

 

Spoiler alert! Come back tomorrow to see what happens next! (Hint: think hair donation!)

 

 

 

Through the Fire

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.”

IMG_0003
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…?

IMG_0004
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!!

IMG_0008.JPG
The view from halfway

I’m pretty sure I was crawling for the last 100 yards to get to the top.

IMG_0009
Finally made it-love me a fanny pack

Thank you Stephanie for pushing me!

IMG_0018
Stephanie helped me get there!

IMG_0017
 I only fell twice on the way down!

Injuries: bruised tail-bone, scraped leg, swollen wrist

Ended up taking a two hour angry nap

Before Koko Head After Koko Head

 

But we did it!!

Screen Shot 2018-07-11 at 8.05.11 PM.png

 

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.

IMG_3707
Pre-Removal

img_3779
Pre-game Positivity

img_3774
The critical care sign was a bit dramatic

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

img_3776
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?

Breaking up with Cancer-#neverstop

Breaking up with Cancer…

….._What to consider when ending your relationship

(Oh wait…that is for the Astrological Cancer sign)

I’m calling it. Over….done….owarimashtahallasfinito

  • 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?
  • Screen Shot 2017-12-08 at 11.08.46 AM
    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…

IMG_3707
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

BobL

2018 will be a positive year of good health, family, and friendships!

IMG_3714 2
Grab life by the handlebars. 

 

#neverstop

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…

IMG_0004
Medications, masks and chemo

To this…

IMG_1123
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)!

Screen Shot 2017-04-29 at 6.56.38 AM
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

Screen Shot 2017-04-29 at 7.02.48 AM

“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!

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….

radiation-2
Radiation Treatment at Tripler Army Medical Center

Or this…

IMG_3226
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.
screen-shot-2016-10-06-at-6-50-01-pm
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!
screen-shot-2016-10-06-at-7-09-25-pm
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!
img_1881
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.)

IMG_2381
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!
screen-shot-2016-10-05-at-6-59-48-pm
Now!! Spread the word!