All posts by kymbalk

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!

Ten Steps for the newly diagnosed-Cancer

Eight years ago, my life was upended by the words you don’t want to hear from a doctor…”I am the cancer doctor.We need to get you scanned tomorrow! From the initial shock and awe until now, I am thriving and teaching and loving life! A friend recently reached out for advice….a What to Expect when you are Cancer-ing.

  1. You have a choice on how you show up! Cancer impacts almost every aspect of your life, but it cannot control your attitude. Identify yourself as a well person going through some health struggles. Choose your mindset and invite similarly positive people into your life. This is not the time to hold on to negative people or words.
  2. Make sure you know who you can contact for after hours questions. When your bones are in pain from a strong chemotherapy, you want to know who you should reach out to at 3 am. Your contact may be the nurse, a doctor, the on-call staff. You don’t want to be miserable and in pain while you search for that number. Put this contact in. your phone where you or a family member can access immediately. Nurse Jackie always told me not to suffer unnecessarily. Take your anti nausea meds…If the kind you are using isn’t working, ask for something else! I liked phenergen because there was a sleep component.
  3. It’s just hair…It will grow back. Many salons offer services where they will shave your head of remaining strays and help you get fitted for a wig. Salon 808 in Hawaii can help! Salon 808 owner Henri Ramirez offers this service for free! I was lucky to be able to have this service in 2012. Look around and check with the local salons. https://www.hawaiinewsnow.com/story/6621789/hairstylist-offers-heart-felt-help-to-cancer-patients/ (If you have long hair, you may want to make a donation to Locks of Love.
Friend Liz King donating her hair for wigs for cancer

4. Allow yourself to rest when you need to rest, but get outside daily to exercise. Even a short walk can restore your spirits and keep you going! Walking connects to all things good! (Wear high SPF because many treatments include sun sensitivity!)

Walking on the North Shore of Oahu

5. Wash your hands! My watch remind me every time I step into the house. If you don’t have that feature put a visible note on the door to your home. You’ll be surprised how long 20 seconds is!!

Apple’s New Series 6 Watch has a hand washing feature! Of course you can always just sing Happy Birthday Twice!

5. Write everything down-keep copies of lab and scan results! Bring a friend to appointments if you need help with the plethora of information. You always think you will remember, but it is so easy to forget. Also, ask for the drug information from the pharmacy. If you experience side effects, you want to know if this is normal or not! Often, you can get copies of your records from your medical facility. You never know when this will be useful! Again, you think you will remember it all…but maybe not.

6. Find support-Family, friends, Cancer Support groups. Those in the group will know exactly what you are talking about when you discuss Carbo-Taxol and Neupogen. Group members can share their experiences with similar treatments! Our group has started Zooming which is great in Covid times.

7. Relentless Forward Motion. Don’t focus on the massive journey ahead, but rather one hill at a time. Find a near term goal that you can focus on. Whether it’s eating healthy, going for a walk, reading a book, or listening to a podcast! Keep on going!

Ultra marathon preparation

8. Statistics are depressing! You are not a statistic. Those numbers are from 5 + years ago, and they are not YOU. Statistics are grim and they don’t set your mind in the right direction. STOP looking at them now.

9. Take pictures!?! Yes, take pictures! I actually wish I had more. When you are in the pits, you will get better. Your hair will grow a little, and then a little bit more. Don’t you want to see if it looks a little longer? The photos will serve as a document of your progress moving forward.

10. Gather information on cutting edge treatments! Make sure you share these articles with your physician. Cutting edge treatment for Ovarian Cancer is Immunotherapy. Is your doctor on the cutting edge? Ask for a second opinion. I listed to Dr. Death on the Wondery podcast this year and was shocked that despite sketchy procedures and treatments, patients continued to see this Doctor.

Reach out to me on Twitter @kymbalk and Instagram @mommykym

Lather, Rinse and repeat. Covid-19 update

Covid-19 update for you all! I am feeling fine and my next check-up is in June. I wonder if they will postpone because several folks at the hospital have tested positive for Covid-19…

I believe my immune system to be back up to 100%, but I’m trying not to gamble with my health.

In the meantime, I am teaching classes online with Google Meet. So far, 100 percent attendance, which I never get IRL (in real life).

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Online Classes

Our shopping trips are minimized to once per week. I’m not ready to cut down to once in every two weeks, but that may be next. We are trying to make our shopping list more complete. I don’t want to get sick because I went to the store for one quart of milk! The Mayor has issued an order that all shoppers will wear masks beginning on Monday.

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Shopping expedition. 

There is a sameness to the days, but some of it is fun! I have reintroduced myself to Judge Judy! We gather around the TV around 5 with Judge Judy Happy Hour!

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Judge Judy Happy Hour

I miss seeing everyone in person, but I also like the slower pace of life. I especially don’t miss my commute to work of 45 minutes to one hour daily!

For my Academy friends. do you remember in Survival Training when we had to listen to the Rudyard Kipling Poem Boots Boots Boots over the loud speakers?

No end in sight for now from restrictions to quarters, but it is okay. I like my life. I like my people and we keep on going!

What’s your sign?

In the 70’s, we were fixated on astrological signs. Are you a Virgo? A Sagittarius? A Libra? (Yes) Libra’s are all about balance. I like that. So when my CA bumps up a little, I assume it will go down again soon.

I want to be Seinfeld’s Even Steven! https://youtu.be/prvm5ZFPIrEhttps://youtu.be/prvm5ZFPIrE

I was just lamenting to a friend that Cancer is like that old boyfriend that will never be completely gone.

Hoping an uptick is just an anomaly and moving forward with my plans for life! Hope you are too!

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?? 

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!)

 

 

 

‘Tis the Season (in Hawaii)

Aloha Friends! ‘Tis the Season to reach out to all of you and say thank you! I am still (yeah!!!) cancer free and working on my eating and my fitness. In August of 2012, I wasn’t sure if I would be around in 2013 and now I am looking forward to 2019.

Relentless Forward Motion!!

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Wedding on Kauai at the Beach House

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.”

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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…?

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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!!

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The view from halfway

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

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Finally made it-love me a fanny pack

Thank you Stephanie for pushing me!

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Stephanie helped me get there!

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 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!!

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