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. I finished maintenance in 2015 and have been healthy for 6 years and counting. Here to help you navigate the ins and outs of self-advocating as a patient! Powerful help to those in need of guidance!
I had the amazing opportunity to talk to Retired General Dan (Fig) Leaf and my good friend Bruce Fink about our respective recovery from cancer. I am so happy to share this with you all in the hopes that we can continue to reach out to cancer patients who are struggling. There is hope!
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You said what? Do you find yourself forgetting what you said or when you said it? The MIND diet can turn back your brain clock! The MIND (Mediterranean Intervention for Neurodegenerative Delay) Diet was established in 2015 and studies are ongoing to determine its effectiveness in cognitive decline. It is a blend between the Mediterranean diet and the Dash Diet. This is NOT about losing weight but rather, improving brain health. (Plus for me, no red meat is included…so that is right up my alley!) My son lured me to the vegetarian lifestyle in 2015 and I have never turned back.
Brain 2.0 (who doesn’t want a better brain?)
As I was back at the Neurologist again last week for the migraines (that will be a whole other story!), my doctor started talking about the MIND diet (The whole time she was talking, I was thinking…didn’t someone tell me about this already… turns out that someone was her…at my previous appointment). Yikes, I need a brain reboot. Chemo definitely produces a brain fog that doesn’t seem to go away.
Put yourself in the driver’s seat!!
When reviewing this WOE (way of eating) I can see that it is easy to tailor for your lifestyle! I have decided to put myself in the driver’s seat in improving my brain health. I purchased Mind Diet Book on Amazon (The Mind Diet for Beginners) and checked another out from the library called The Mind Diet by Maggie Moon
Wait, what is it??
I am a visual leaner, so included a graph below to share the basics with you. I like Maggie Moon’s simple plan of counting up points for eating items from the approved list. So, rather than and all or nothing approach, we could focus on adding healthy items to our diet and track the points of healthy eating for the week. I love a good habit tracker, so this is perfect! The benefit of the diet is that it can improve cognitive function and lower brain age by 7 years!!
My Focus will be adding leafy greens and nuts
My focus will be adding cashews, walnuts, almonds, Pistachios, Macadamia Nuts, and Pecans. The Plan-bag them all on Sunday for the week in neat child-sized portions. During the bagging process today, I did observe that 1/4 cup of each nut is like absolutely nothing!! I will need to visualize this as taking a nut vitamin! (You’ll also see some Goji Berries and Dates from Down to Earth in the picture below) I was in Down to Earth browsing their goodies and realized I had never tried Goji Berries…verdict: tasty!
Portion size matters! I can easily eat a whole can of Blue Diamond Wasabi Almonds, however, my waist suggests that is a bad idea.
I don’t have a fancy kitchen scale but…I found this…”A one-ounce serving of nuts greatly differs. The following equal one ounce: 24 almonds, 18 medium cashews, 12 hazelnuts or filberts, 8 medium Brazil nuts, 12 macadamia nuts, 35 peanuts, 15 pecan halves and 14 English walnut halves”-The Cleveland Clinic
“I went to the doctor”…..how do we get “Closer to Fine”-Indigo Girls 1994
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!!
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.
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 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?“
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 randomizedcontrolled 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!
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-patients/ (If you have long hair, you may want to make a donation to Locks of Love.
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!!
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!
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
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).
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.
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!
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!
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.
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!
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 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??
Yesterday, I spoke of ways to help your friend with cancer….so, the big reveal….this is a big way to help! My friend Liz wanted to find a way to be supportive and decided on cutting her hair! over two feet of hair will be sent to Locks of Love.
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)
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.