A Cancer Survivors’ adventure in Healthy Eating, Better late than never

It’s been 4 years since I was undergoing cancer treatment- and only recently did I start to really look at my diet. What changed might you ask? A good friend of mine was just told her breast cancer metastasized to her lungs. And I instantly thought of another friend I met this summer, Chopper. Chopper has stage IV Lung cancer at age 36 and yet with a strict diet and a new targeted therapy he is living, really living. As a cancer survivor I should know better- I shouldn’t have waited until a friend of mine was told to go on a strict low sugar diet and to eat healthy. But that’s what it took to really kick it into high gear. And it’s not because I am afraid my cancer will come back- I’m not- well at least 95% of me is not. I am doing this because I figured it’s the only thing I can really help her with – I can cook for her, do the research for her, find great inspiring cookbooks for us and I can go on this diet with her. So we can moan together about how much we miss crack, um, I mean sugar. And coffee, cheese, gluten, donuts…

So this past week or so I have been reading Kris Carr’s Crazy Sexy Diet and The Cancer Fighting Kitchen by Rebecca Katz.  They have truly changed my thinking. Everything that we eat, drink, ingest in any way, coat our skin with, or wash our hair with, plays a role in creating a hostile environment to cancer.

Here are some tips I took from these books and my experience this summer with The Palette Fund cooking for us at the First Descents Surfing Camp. And keep in mind – I’m a beginner, I am just learning and I am paraphrasing what I read. I definitely suggest you read the sources first hand.

No Refined Sugar – limit sugar overall, but cut out refined sugars- it can feed cancer tumors. Replace with Coconut Palm Sugar (1 for 1 in a baking recipe), Agave nectar, Maple Syrup, or Honey (although there is a difference of opinion on Honey)

No Diary- did you know milk leaches the calcium from your bones? Milk does not do the body good- who knew? And as my acupuncturist said- one mammal drinking another mammal’s breast milk is not natural.

Gluten is inflammatory- so limit this, but if you’re going to eat gluten- eat whole grains, sprouted grain breads like Ezekiel Bread which you can find in the freezer section of Whole Foods.

A Plant based diet is best- increase your vegetable and grain intake.

If you still want to eat meat (which I do) you need to eat organic if possible and forget the red meat altogether. And there is a list of which fish are safe, and which fish have a high mercury levels in the Cancer Fighting Kitchen.

Try drinking wheatgrass juice and green juice made from organic (if possible) vegetables like celery, kale, lettuce.  I am learning all sorts of things- like how to grow wheatgrass in your house, how much wheatgrass you need for 12 oz of wheatgrass juice. It’s a superfood!

Drink and cook with filtered water if at all possible and skip the plastic water bottles. A filter will take out some minerals, but it also removes chlorine and other nasty chemicals from our water. What you’re missing in minerals from unfiltered water- you will get from your food.

Use Sea salt-it has a lot of great minerals in there.

Check out EWG.org (Environmental Working Group’s website) for a list of the Dirty Dozen (foods you should try to buy organic) and the Safe 15 (foods you don’t have to buy organic) Also check out this website for the cosmetic database- just plug in the products you use and they will tell you if their are harmful or not.

Stay away from canned goods. The can lining has BPA- and until our government puts us first and the chemical companies last- it’s going to remain there. BPA is a form of synthetic estrogen- not good- makes little girls get their periods earlier and for women like me with estrogen positive BC- I want to stay far away from BPA.

Get a skin creme that does not have any parabens or phthalates.

Beans! A great meat replacement for protein. High in protein and vitamins- buy organic, dried beans- cook up a whole batch and then freeze them so you have them prepared for recipes.

Stay away from anti-bacterial soaps- use Dr Bonners castille soap and all natural soaps you can find at Whole Foods or natural food markets.

In Cancer Fighting Kitchen, Rebecca Katz also goes through what foods and recipes are good for specific side affects. As well as what foods are cancer fighting powerhouses and how they help. It’s an amazing resource. If you were to buy 1 book to help you start eating healthy- I would get this one. Even if you are not undergoing any cancer treatment.

I don’t have a ton of money to replace everything I use all at once- so as I run out of shampoo etc- that’s when I replace it with a healthier product. And I pick and choose when I spend the big bucks on organic with the dirty dozen in mind.

So join me on this journey of healthy eating. I will probably fall off the wagon now and again, but it’s how fast I get back on that will make a difference.

 

 

 

 

 

I also bought Anti Cancer by David Servan-Schreiber MD PhD, and Beating Cancer with Nutrition by Patrick Quillin, and The Swiss Secret to Optimal Health: Dr. Rau’s Diet for Whole Body Healing by Thomas Rau, Susan Wyler but I haven’t read these yet.

How come the doctors never mention drains after surgery?

Or if they do mention them- it’s in passing. Like it’s no big deal. Well, it IS a big deal! Only because most people are unprepared for them. Where do I put them? How do I shower with them? And what? I have to have them for another 2 weeks??? Are you kidding me?  The receptionist at my surgeon’s office told me, “They are gonna be your best friends…” I asked her how long they are usually in for and she said much longer than you want them to be. So for those of you who don’t know- surgeons install these drains to help you heal, and you don’t have to have a mastectomy to have a drain installed. My friend Brent had this huge cyst removed from his neck and he had a drain.  You can have anywhere from 1-4 drains for a double mastectomy. I had 2 drains- 1 one on each side, in my arm pit area. Drains are 1/4″ diameter tubing that is about 20″ long and at the end of the tubing, they put a soft plastic bulb that collects and measures the “fluid”. Here is wikipedia’s description of a Jackson Pratt surgical drain In 2008 when I had my double mastectomy- there was no such thing as a drain scarf, drain pockets, or a shower shirt. You had to safety pin your drains to the shirt you were wearing and if you wanted to take a shower with them, you had to fashion a belt around your waist and safety pin the drains to that. All sorts of problems arose, not the least of which was accidentally pinning your drains to your pajama bottoms- and then when you pull down your pants to go the bathroom- yikes! I get a little woozy now thinking about the pain.  So.. the point of this post- is to advise you to safe yourself a little unnecessary pain and pre-plan what your going to do with your drains after surgery!

Jackson Pratt surgical drain image

 

 

 

Bald is Beautiful, Henna tattoos on Cancer patients

When I was at a C4YW Conference in February, I met a woman named Stephanie who just finished Chemo and she has a henna tattoo on her scalp. It was awesome! Stephanie said it was her way of celebrating the end of Chemo. And you know I am all for throwing yourself an end of Chemo party with anti-cancer cupcakes! This is just another way to do that with style… and class…

Stephanie with her Henna Tattoo to celebrate the end of Chemo. Mardi Gras themed since she was going to the Conf in New Orleans

Stephanie

So a friend of mine sent me this article about Henna Tattoos on cancer patients and then I found this one as well. It seems to be a trend I knew nothing about! What a great gift this would make to a patient. And make sure they use the real, natural Henna.

http://commonhealth.wbur.org/2012/05/henna-crowns-cancer

 

 

Creating “Art” with a tumor, one survivors way to visualize her cancer

On Studio 360 from NPR, they highlighted an artist, Leonor Caraballo, and her project “Object Breast Cancer” who took her actual MRI slides from her cancer diagnosis in 2008 and made a solid object from the tumor that was scanned there. I put the word “art” in quotes not because it is not an art object, but the word art has all these connotations. Like it’s supposed to be pretty, decorative or even functional like furniture- that is was created to be art for art’s sake. This piece is none of those things. Instead this piece is cathartic and powerful. It’s not about creating a wonderful object to sell in a gallery and for some one to put on their mantle- it’s about the artist trying to process what just happened to her in a way she can understand. A visual way. Not only did it help her visualize what was removed from her and what caused her cancer- but it ended up helping her breast cancer surgeon, Dr. Alexander Swistel measure tumors not by their overall size but by their volume. Which can change treatments for patients.

For me, as a breast cancer survivor, not until today as I was listening to this piece on radio, did I think about what my tumors would have looked like. I always thought one of them was roundish because they said it was 2.5cm. I never thought it would have tentacles and maybe look like swiss cheese because of the chemo. If it really does have tentacles and look this nasty -I am so glad I got a double mastectomy- just to make sure it’s all gone. This artist wears it around her neck- enjoying the fact that it is literally outside her body. Cancer and it’s many affects never stops surprising me.

Sculpture of tumor by Leonor Caraballo, Object Breast Cancer

Look at my bro Chopper! He’s defying the odds!

Here is “Chopper” someone I just met a couple of weeks ago -surfing with First Descents. (see my last blog post) He is on this new kick-ass Lung cancer drug (click on youtube video below)- you should have seen him on the waves. He was amazing! I couldn’t be happier for him that he is on this drug. I want him to live to a ripe old age of 93 and give the nurses tons of trouble.

Photo by Dan Armstrong Photography

Photo by Dan Armstrong Photography

Surfing with First Descents FD1

(First Descents offers young adult cancer fighters and survivors  a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.)

I didn’t know what to expect or if I was going to get much out of it- it’s been 4 years since I was diagnosed, and 3 years out of treatment. I’m healed right? Life is back to normal. Well, the “new normal” anyway. But in a short period of time – I found a me that I am really proud of.

Let me just set the scene of how physically out of shape and klutzy I am. I was on the field hockey team for an entire season and never made a goal- not even in practice when you can aim right at it. My coach was so disappointed in me -she just stopped looking after 3 weeks. I have broken 3 bones in my life, all trying to do physical outdoor activities. After that kind of childhood, I gave up and stuck to art. I was good at it and the worst you could do it burn yourself mildly with wax when batik’ing.

So there was a level of frustration about my physical limitations -1) because I’m klutzy and have never been successful before 2) after all of my surgeries and reconstruction- muscles aren’t exactly where they should be on my chest-it’s a pretty weak area. And there was some old fashioned fear of just killing myself. I had all sorts of ways that was going to happen floating around in my head. The cord from the surf board would wrap itself around my legs and I would drown, I would snap my head in a wipe out, I would be knocked unconscious by the board after a wipe out and pass out and drown. I am not making this up. I am Murphy’s law-if it can happen – it will happen to me.

First Descents plans for campers to work on surfing for 3 days. They hired this awesome guy and his team, FarmDog to show us how it’s done. The weather was perfect, the waves were really little the first day- and then they got bigger each day, for a little more of a challenge. It was like Mother Nature had been in cahoots with First Descents. The first day- all of the 21 and 22 year olds were up on that board and taking it in. They were amazing. And I was wiping out. The instructors would go out with you and tell you when to take a wave, and give you a little shove in the right direction- as they yell-”Paddle, Paddle, Paddle!” And you paddle- like someone is chasing you. You want to get ahead of the wave with momentum, so when the wave hits your board, your going as fast as the wave and it picks you up. That’s when you try to stand- as fast as you can. Most of us got to our knees pretty quickly- and then maybe a knee and a foot. My first wave I caught – Chris (who turns out to be this amazing professional surfer-what is he doing helping the likes of me?) was my instructor and he told me just ride it in laying down on the board. That was freakin’ amazing! It was like being on a roller-coaster face first. Man that gave me such a high. I wanted more- I was willing to risk it. So for the next 2 days I tried my darnedest to get up on that board with feet- but I just would freak out when it was time to stand.

So on the last day- I was determined to stand on 2 feet. It was going to happen if it killed me. I don’t know- I just wanted to make this happen so badly. I am not sure why I put so much pressure on myself to do this. We worked on it all morning- I kept slapping myself back up on that board- wipe out after wipe out. At one point I did a DOUBLE somersault in my wipeout. I stood up like an Olympic gymnast after that one. It was too bad it was underwater, it was quite impressive! Everyone at this point went in for a break and lunch, they had come and conquered. Whatever level they achieved they seemed content with- except me. That’s when Danny Boy (Aaron) an awesome instructor from Australia who had the patience of a saint, stuck by me for 45 minutes- try after try. His legs were cramping, his face was a bit blue and he had to go to the bathroom- but he didn’t give up on me. And I will be forever grateful. I finally got up on that board and stood with 2 feet! Woohoo! And I had everybody cheering me on from the beach. It was awesome. I finally accomplished what I had set out to do. It wasn’t pretty, but I did it! That night- Gertie awarded my the “Shark Award” for my ocean accomplishments. I couldn’t believe it- I guess my fortitude and persistence paid off.

Paddle, Paddle, Paddle!

I'm coming..

I'm Up! Woohoo!

This blog entry is way too long as it is. But I couldn’t finish without mentioning the 13 amazing people I met. Some of them were still battling their cancer but they went out there with everything they had. We also had quite the support team- Daryl and Rec who were our camp counselors, StrongArm (amazing photographer who donated his talents for the week) and then we had a talented  and loving Chef, Cha Cha from The Palette Fund who was dedicated to teaching us how good food can heal and be super delicious at the same time. And Cha Cha’s two side kicks- Munchkin & CityGirl. We all accomplished what we needed to and in the time it took us to do that- we made friends for life. It’s a funny thing this cancer thing- it instantly bonds you to people from all walks of life that never in a million years would you have met if it wasn’t for cancer.

Thanks everybody for sharing a little bit of your life with me- I’ll never forget you. And thanks First Descents for giving me a athletic victory – the first in my life- Take that Cancer! Suck it!

Sincerely,

KDub

 

New Friends

I am going Surfing! Yikes!

So I am 5 days away from flying to North Carolina’s Outer Banks to go surfing. I am going with First Descents- they are an organization I found out about from another survivor who went kayaking last year.

First Descents Mission Statement:

First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.

And I thought, what the hell- I should do this! But now I am getting a little nervous, did I mention I have had 3 broken bones, and I am a bit of a clod? I have my own physical therapist. Even before cancer- I had every part of my body x-ray’d or scanned.  That is why I stuck with a career in interior design- it’s an indoor activity and takes no physical coordination. So why did I sign up to do this? Because I am sick of being sick, of being old before my time. I am tired of dealing with things people my age don’t deal with. I want to live and be young again- and I like to see the look on people’s faces when I tell them I am going surfing. ;-) They are usually some level of shock and disbelief- I am an out of shape size 18. I am not proud of that- that’s just where I am right now. And that’s ok. But what’s not ok- is how I feel like I’m a 60 year old. So THAT’S why I am going- I want to push my limits and see if I can get back my young self.

Stay Tuned! (that’s for S & K)

When I get back- I’ll fill you in on how it went. Cross your fingers I don’t break my 4th bone. ;)

Photographing Survivor Stories…

Carla Ten Eyck, a local Hartford, Connecticut photographer decided to do something about so much cancer around her. She is going to take pictures of Cancer Survivors at her photography workshops and not only tell their stories but give 10% of her workshop profits to a charity of the survivor’s choice!

And I am very honored, Carla chose me for her Tuesday, July 24th Back to Basics workshop! Thanks Carla! And Heaps of Hope is going to be grateful too!

Carla Ten Eyck Photography Hartford ConnecticutCheck out Carla’s beautiful website here.

 

 

 

What makes a great Doctor

As a cancer patient who has fibromyalgia, I have been to my fair share of doctors. In my cancer treatment year I logged over 2,000 miles in my little red corolla going to doctors appointments, and my doctors were no farther than 7 miles away! Yikes!

Going through something like cancer can be really scary, we unfortunately have to rely on other people (doctors and nurses) to guide us through our battle. We can’t do this without them. Even when we are vigilant and advocate for ourselves, sometimes it’s the luck of the draw. Which doctor you get and how well they treat you. But if you have to have the mindset that you are putting together “your Team” and that you are in control of who is on your Team, and that they should know that they are lucky to be there. Doctors should not only know everything there is to know in their field they should also have a great bedside manner. Doctors must have both of these qualities if you are to trust them with your life.

When I was in my 20′s I had a dear friend go through cancer treatment, and one of the things I learned from seeing her go through this was that we all need to stand up for ourselves and demand better treatment from our doctors. And if they fail to give us the best possible care it’s in our right to FIRE them and find another doctor. (I realize I am fortunate and live outside a major city with lots of doctor’s to choose from.)

What a Bad Doctor is….

I once had a doctor who told me some bad news and then after seeing my reaction said rather flippantly, “I see you have a problem with that”. Can you believe it? Fired!  I once had an ultrasound scheduled on a religious holiday, and because my last name did not look like I would be needing to celebrate that holiday- they took patients before me- who were scheduled After me! Did I mention they made me drink a ton of water and not pee for the ultrasound? I couldn’t believe it- I was in a lot of pain. The nurse did confess what was going on and apologized. But, needless to say I never went back there.

What a Great Doctor is….

Let me tell you about some great doctors…

Great doctors put their patients first before their egos. Dr. Robyn Sachs was my breast surgeon, (here’s an interview with Dr.Sachs)on youtube.com. Dr. Sachs did my initial surgeries and diagnosis at Winchester Hospital (small hospital outside of Boston) And she said several things that made me like her. One- that I would be a fool if I didn’t go to Dana Farber, 10 miles down the street for a second opinion. Two- That if she was me, she would go get a DIEP flap at Beth Israel in Boston. That she had seen the plastic surgeon’s work and that is what she thinks would be my best outcome because I was 33 years old and I had a lot of living to do.  She recommended that I go somewhere else -not because she wasn’t qualified but because they didn’t perform the complicated 10 hour long immediate reconstruction surgery that would give me my best outcome. She put me First. I recently went to a breast cancer conference where I went to a reconstruction workshop with cutting edge plastic surgeon- and even 4 years later with all of the advances – what Robyn Sachs did for me- still stands true. It WAS the best choice for me. I listened to the other women who were in shock because in hindsight they saw how they were never offered the options for plastic surgery like I was. I stayed with Dr. Sachs even though she didn’t do my double mastectomy surgery throughout my treatments because I wanted her on my team and I wanted her checking in on me.

Another example of a great Doctor, was Dr. Richard Heidbreder ,(click on his name, great story about him)my radiation oncologist. When I first met with him, I was so overwhelmed and my head was spinning. I had started chemo, I needed to know if I needed radiation and what plastic surgeries I really could do after my radiation treatment. All the doctors were telling me I couldn’t do a DIEP flap reconstruction (where they basically take your stomach and make you new breasts) because I was going to be radiated. And I wanted to know, why not? Dr. Heidbreider was the only doctor that took the time to tell me the physiology of it and why it wasn’t a good idea. He also explained the risks if I didn’t go through radiation. That I had a 30% chance of having the cancer come back. He never patronized me, he took his time to explain everything fully and answer all my questions. He never acted in a rush (even though I knew he was busy). He always had kindness and an optimism and a smile to share even though he was going through his own struggles. This is an example of a great doctor. I never knew he had a reputation for being a great doctor to other patients until after he died from ALS. The world has lost a great man.

dr richard heidbreder winchester hospital great doctor

Dr. Heidbreder sitting with a former patient (pic from Boston Globe)

And last, but not least, Dr. Beverly Bowker, my oncologist with Winchester Hospital. You will not find a kinder, more generous or smarter doctor. She not only treats you for your cancer- she is keeping your whole body in mind- she is a great internist. She is always up on the latest findings and medications. Even when she hasn’t seen you for a couple of months- she tells the nurse to call and check up on you. Who does that? She is the only doctor I have ever patiently waited 2 hours past my appointment time to see. I figure- if she is not in the room and she is running late for her appointments there is a really good reason. She is saving lives- she saved mine once. Now it’s someone elses’ turn to have Dr Bowker’s focus. Once she is in the exam room – her attention is undivided. She’s all yours. And what a Dr to have on your team!

So -if I could leave you with one thought- put yourself first. Don’t worry about a doctor’s feelings- make the best decision for yourself and get great doctors on Your Team. And if they are not good to you, Fire them!

 

 

What to expect at Radiation treatment

I have gone through what it’s like to go to Chemo- so I thought I would go through what it’s like to go through Radiation.

First off, Radiation is easier than chemotherapy; in so many ways. Everyone will tell you this, but it’s true.  When you first get started they are going to have you come for a “fitting” with the machines. Depending on where your cancer is they might make you a mask to keep your head still and in the correct position (head or neck cancers). It’s all about positioning and making sure everyday of treatment is exactly the same. Because I had breast cancer they gave me tiny tiny blue tattoos in 3 different places on my chest and bottom of my neck. They are really hard to find now, but if I look hard I can find them.

The whole appointment might take an hour because you will see the radiation oncologist or the nurse before your appointment and then it takes time to change into an examination gown and then change back into your street clothes. My actual treatment time or as I like to call it “nuking” was about 20 minutes long. Some people were much faster, some people were much longer it just depends on where your cancer is and how hard it is to position you. And all you have to do for radiation- is just be very very still and listen to the technicians and do what they tell you. Easy. Except I had to do it everyday, Monday -Friday for 35 treatments- and you get physically tired from radiation and emotionally tired of always going to cancer treatment. But the techs try to make it as pleasant as possible, they were warm carrying people just like the chemo nurses. A special group of people who you will get attached to and learn about their families and their goals. I was going through a tough transition at work and they were really great listeners. So after your “nuking”, you get dressed and then go about your day. It’s not like chemo where you may be extremely nausea and sick- Radiation does do a number on your energy level, but I will take that over chemo any day.

And the burning of the skin. I’s 4 years later and I can still see my “tan” lines. I am just a little darker and redder on that side. It’s all about moisturize, moisturize, moisturize when your undergoing radiation. I was lucky my hospital gave me radiation cremes to take home with me to use. (one less errand to run) But they can be purchased online or in medical supply stores. They are pretty readily available so that is why I don’t carry them here at CancerVictory. I wore my favorite old cotton t-shirts with no tags during that time. I couldn’t wear a bra it was just too much on my skin- but you do what’s comfortable. I thought I ruined those t-shirts but eventually the stains from the cremes came out of them. I had a “special” treatment that I got from my acupuncturist at the time to help put off the actual burning. I will fill you in on what that treatment was on a later post.

So there you have it- that is what going to radiation is like. Tiring but do-able.