Tag Archives: ovarian cancer

Ten Steps for the newly diagnosed-Cancer

December 8, 2020 kymbalk 5 Comments

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.

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.
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.
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-patient s/ (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!)

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

cancer, ovarian cancer, ovarian cancer blog, ovarian cancer fighter blog

Fight Club

June 25, 2017 kymbalk 1 Comment

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

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.

Atkins, health, ovarian cancer, ovarian cancer blog, Uncategorized

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

December 12, 2016 kymbalk 4 Comments

Preparing for Christmas in Hawaii is fun!

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.)

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!)

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!

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?

Diet, health, ovarian cancer blog, Uncategorized

Teal Tuesday-why I wear Teal

September 26, 2016 kymbalk 1 Comment

Before you find your Halloween costume…

Before you get out the fall decorations…

Talk about Teal!

September is Ovarian Cancer Awareness Month….

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.

I recently met with Nina Wu….

…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.

So tomorrow, wear your teal.

health

Cancerversary #4-It’s a Celebration!

August 16, 2016 kymbalk 7 Comments

Why celebrate at all?

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)

Screen Shot 2016-08-14 at 7.23.53 AM.png — **Melon Day** it is!! August 16, 2012-initial surgery date

So I have officially chosen August 16th, 2016…four years from my first surgery…Melon Day! My “fruit” anniversary!

From this…

At Tripler Army Medical Center with Ben and Rachel

this…

5784144F-5D20-492F-B60A-4F2250D5BF8D — Hemonc Clinic at Tripler Army Medical Center with Renee

this…

and this…

FullSizeRender-4 — Radiation treatments at Tripler Army Medical Center

to this….

Gingham Style….four years later! #summerofkym

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!

Available at Skicks.com for Breast and Ovarian Cancer

Best “fruit” anniversary ever!

What are you celebrating in your life?

cancer, graduation, health, school, Uncategorized

Graduation 2016 “Sto1k6d”Mid-Pacific Institute

May 30, 2016 kymbalk 4 Comments

I was diagnosed August 6, 2012 with Stage 3C Ovarian 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

13248357_10154020959156418_2657253532433214803_o — Baccalaureate at Central Union Church in Honolulu

May 28, 2016, the Big Day arrives-“light” showers and then sun on campus

Mid-Pacific Institute Campus in Manoa Valley

In the words of AJR….”I’m Ready”

The stage is set….to hear “Benjamin Robert Roley”

Finally, the fun!

and more friends…

C. Roscoe has taught all three Roley kids!

And sister Rachel

Rachel made the “Ben there done that” sign

Mom and dad…

Traditional Lei giving Post Graduation….Grandparents…

cancer, Diet, health

What’s Up?

August 29, 2015 kymbalk 7 Comments

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.

The view from One World Trade Center...overlooking Ground Zero — The view from One World Trade Center…overlooking Ground Zero-by Mark Sugino

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?

cancer, Diet, health, ovarian cancer blog, PET scan, radiation

PET SCAN-I’m Ready!

July 9, 2015 kymbalk 5 Comments

Do you remember in the early 90’s when “Take Your Daughter to Work Day” became a thing?

Today, you (and the kids) get to come with me to my PET scan and see what it’s all about! First, get to the hospital early and look for parking! (Create a parking spot in the grass on the hill.)

Rush to get to the Nuclear Medicine Clinic-then wait!

and wait…

FullSizeRender-4 copy 2 — Waiting room fun with the kids

The day prior to the scan: Prep instructions for PET scans. Basically, no carbs, no exercise, no alcohol, no nothing. In my house, we call that a “potato” day because we just sit around and do nothing.

The morning of the PET scan. Nothing but water. Drink it from a fun mug though!

Fill out all the paperwork!

Check blood sugar! They ask if you’ve been fasting and this will prove it. Numbers must be between 80-200 to proceed. Whew, I passed! (No food or caffeine after midnight!)

Next up! Radioactive dye injection. The radioactive sugar solution will migrate to the areas of “hyper-metabolic” activity (in other words, seeing something light up is bad!)

Dyejpg — Glucose Solution of Radioactive Dye (note the nice carrying case)

I’ve already been to the chemo room to get my port accessed! I’m Ready!

FullSizeRender-4 copy 3 — Port accessed and ready to go! “I’m ready.”

After the radioactive dye…more waiting…45 minutes for the dye to circulate throughout your system. (My 45 minutes turned into an hour.)

Finally!

The whole process takes about 3 hours. The actual scan only takes about 25 minutes! Then, off to lunch!

…and wait for results!

http://www.yelp.com/biz/hale-vietnam-honolulu

cancer, Diet, health

Side Effects

March 5, 2015 kymbalk 4 Comments

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.

Screen Shot 2015-03-04 at 8.27.23 PM — Food Network’s Chopped with host Ted Allen

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.

Uncategorized

Professional vomit queen-navigating the migraines

January 24, 2015 kymbalk 8 Comments

Warning: Not for the squeamish. Step away if you have a weak constitution. Migraine sufferers will agree that migraines are no ordinary headaches. Unlike a broken arm, there is no visible indication that your pain level is through the roof. Taking regular pain relief for migraines (for me) is like putting a dropper full of gas in the car and thinking it will take you somewhere . Migraine relief is a much more complicated dance than that. A careful combination of prevention and treatment is my only solution. I should have known the stress of this week was going to trigger a headache, but I always naively believe that this time it will be different. (Remember the movie 50 First Dates? I am like the Drew Barrymore short term memory loss character.) I shouldn’t be surprised when they happen and the route they will take, but it always catches me off guard. I choose to not think that it is stupidity, but rather optimism. Every migraine trail I take leads to the porcelain dumping ground. (I was going to add a vomit image, but that would just be cruel to all of us, so instead, I’ll add the movie poster) When the headache ends, it is like a long journey completed.

I should be happy that I’ve only thrown up three times in January. One of the side effects I appear to be having from the Avastin treatment is sporadic migraine headaches. The first sign of the headache is a piercing high pitched frequency pain in the back of my head. (It feels like the frequency only dogs can hear that drives them crazy) Then the pain shuffles from back to front and back again. I sit with an ice pack on my head and I speculate how long it will take till the vomit train begins. Today, I made it 45 minutes. Something about vomiting is cathartic (haha! Really! At least I made myself laugh) It’s like my body realigns and resets itself after that. The trick of getting the pain to go away lies in a careful distribution of Migraine meds, anti-nausea meds, and vomit.

Last time, it was after a fantastic meal of Baked Ziti (which I used to love…I’ve attached a recipe in case you still love it.) That time was the first time that I threw up through my nose. I had a noodle come out my nose. I guess there is a first for everything.

My sister was visiting us that time, and the next morning she asked if I had been coughing during the night. Yes, I “coughed” a lot that night. It really was good ziti, more so going in than going out. Sadly, I don’t see myself eating anymore Baked Ziti in my near future.

I have recently swapped out Imitrex for Maxalt in the quest to find more effective pain relief. I think the Imitrex works for me, but when it gets thrown up so soon, not as much. Maxalt can dissolve under your tongue and sneak up on the migraine before the vomiting begins (but dissolving pills under my tongue is slightly nausea inducing too). I always wonder at what point does the pain medication count. In other words…If you take a pill and throw it up 15 minutes later, has that pill been ingested into your system enough to work? Or, do you assume it hasn’t and does again.

Today’s headache infused my dreams and woke me with a jolt this morning.

"Last night I dreamt somebody love me." Smiths lyrics — “Last night I dreamt somebody love me.” Smiths lyrics

The only direction this day can go is up.

ovariancancerfighter