Kicking Cancer

Prevention Through Healthy Living

Archive for the tag “community”

28 Nov 2012
20 Comments

Good Luck for Now

The radiation phase of my treatment is now complete.  Yeah!!!  I have been celebrating for days.

My skin looks great despite some tanning with minor reddening in the boost area and a now brown “splotch” caused by my negligence in hiking all day without proper protection over a portion of the site.  Although I was not as disciplined as I could have been, I applied lanolin twice per day as per the suggestion of the radiation oncology staff at the Center.  I also used a burn cream that I got from Pine Street Clinic that they miraculously obtain from Chinese hospitals (apparently difficult to get).

Radiation Therapy was a positive experience and I absolutely loved my team led by Doctor Francine Halberg.  I cried in my car reading their well wishes on my diploma after my last visit to the Center.  The people are exceptional.  Kind, genuine, diligent, precise, and even fun are but a few words to describe my team.  It seems like ages ago when Dr. Halberg told me that she wished I could have been a fly on the wall during the afternoon planning session when my surgeon, Dr. Leah Kelley assisted in the planning in order to pinpoint the location in my arm  pit area where, despite her diligent scraping, there may have been some microscopic cancer cells remaining.  I think my favorite day was in preparation for the boost (the area that would receive extra radiation since microscopic disease may have remained), the team left me lying on the table with my arm above my head for so long that the only response I could muster (since I could not move a millimeter) was to start giggling uncontrollably.  I had to think about despicable things in order to stop myself from laughing.  What I loved about the day so much was getting to meet and witness in action some of the players in the “behind the scenes” planning and laying out of my plan.  They are a brilliant, focused, creative and “top in their field” bunch and all of their busy-ness and adjustments, surrounding my corpse pose and the monstrous machine, gave me confidence that I was in the best hands possible. So……

A Year in Review:

December 29, 2011:  Nicole discovers odd lump on her right breast.

March 20, 2012:  After misdiagnosis by primary care doctor and ultrasound radiologists’ interpretation, the tumor was finally classified as cancerous by Dr. Ellen Mahoney.  Late March and early April filled with phone calls, appointments, and diagnostic testing including mammogram, MRI and PET CT scan.

April 20, 2012:  With skillful mapping and meticulous mastering of scalpels and clamps, Dr. Leah Kelley of Marin Cancer Institute removed the insanely large (~5 inch diameter!) tumor.

May – September 2012:  Adjuvant chemotherapy program overseen by the experienced, wise and loving Doctor David Gullion.   4 cycles of Adriamycin and Cytoxin (every other week) followed by weekly administration of Taxol and Herceptin.  (Herceptin is through the clinical trial, and will continue every three weeks through July 2013).  Riding my bike 300 miles in six days to my first appointment was definitely a highlight of this whole experience.  I will never forget the doctors and gang from the Center that joined me for the final 50 miles from Bodega to Fairfax!

October 15-November:  Daily Radiation (Monday through Friday) administered by the dream team described above – 30 doses.

November 2012 – November 2017:  Hormone Therapy is an important part of my adjuvant treatments, and at five years is longest lasting of my treatment protocols.  Tamoxifen is the pill I will take daily (at least I can be home for this one!!) Tamoxifen is a drug that blocks estrogen from binding to breast cancer cells (not all tumors are driven by estrogen, but mine was ER+ which stands for estrogen receptor positive and it just means that the receptors are present on the surface of cancer cells).

Which brings me to today!  Feeling so grateful to all involved on my multidisciplinary medical team.  These doctors in addition to the other doctors at the Center (they work much of the time as a team with a “tumor board  conference” every Tuesday and in the hallways of the center) have left me feeling like I have done everything possible from a medical standpoint to remove and destroy the cancerous cells in my body.  Trust in this team  has never once wavered and has made all of the difference in my attitude and positivity all the while.

And in an effort to not be on the computer all day, in a future post I will write about all of the OTHER things and people I am grateful for, namely my supportive husband, kids, extended family, so many friends, a broad community, including the Breast Health Project, my chinese medicine practitioners and teachers, and qi gong.

I will spend today enjoying the beautiful and bountiful rainfall, organizing my stuff, packing, and cooking a big celebration meal (Indian food I think!).  Tonight I see Tosca (SF Opera) with my sister and tomorrow morning early I will brave the storm, driving home to my beloved family in time for Nutcracker rehearsal and cookie baking.  Not to sound cliché, but LIFE IS GOOD (for me, right now).  There has been so much suffering in my community as of late and it reminds me that suffering is universal and also a part of this thing we call life —these instances can’t really be compared, they all suck (for lack of trying for a better word).  Cancer, severe injury, disability, depression, unfathomable loss, and even more global issues and concerns like famine, habitat loss, war, the list goes on.

For some reason it reminds me of the Good Luck Bad Luck story that I love so I will post it here.

I wish all of you good luck and many blessings today!

Good Luck Bad Luck!

There is a Chinese story of a farmer who used an old horse to till his fields. One day, the horse escaped into the hills and when the farmer’s neighbors sympathized with the old man over his bad luck, the farmer replied, “Bad luck? Good luck? Who knows?” A week later, the horse returned with a herd of horses from the hills and this time the neighbors congratulated the farmer on his good luck. His reply was, “Good luck? Bad luck? Who knows?”

Then, when the farmer’s son was attempting to tame one of the wild horses, he fell off its back and broke his leg. Everyone thought this very bad luck. Not the farmer, whose only reaction was, “Bad luck? Good luck? Who knows?”

Some weeks later, the army marched into the village and conscripted every able-bodied youth they found there. When they saw the farmer’s son with his broken leg, they let him off. Now was that good luck or bad luck?

Who knows?

Author Unknown

 

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Posted in Post Cycling Trip/ Chemotherapy, Six Weeks of Radiation and tagged , , , , , ,
31 May 2012
5 Comments

In Gratitude of Magical Things

First off, I’d like to post a comment my sister wrote as it beautifully thanks a bunch of people present in one way or another at my arrival in San Anselmo. As you can imagine, I was exhausted and a bit overwhelmed and did not get to personally thank everyone on that street corner, particularly because my kids were there, tired, and needing my attention too…..So here is a blanket thank you to anyone I have missed lately….THANK YOU FOR EVERYTHING.  I AM FORVER GRATEFUL AND HONORED BY ALL THAT IS COMING MY WAY! And here is my sister’s note:

“Loved the last stretch video….wish I saw if you snuck a bite of a honey bun at the Bovine, of course you likely drank your juice instead which is why you are doing soooooo awesome right now!  I just have to say how floored I was  when  I had a last minute Saturday morning shower idea, sent one mass email to 20ish dynamic, loving people (some of who do not even know you!)  and next thing I know plates of cookies and bags of lemons arrived at our house like you would not believe….well you can believe it because what other bake sale has ever raised  almost $400….then there were the people who gave me money the day before saying “just put a cookie in my mailbox if I cant be there” and my neighbor down the street who handed me a 20 bill at the end of the day just because he heard about it.  Thank you to all the children who made the signs, sales, cookies and lemonade and all the friends who donated cookies, plants, carrots, lemons, tangerines and who came to see you ride in…..and that band that just happened to be playing music (before the police asked them to leave) who donated all of their tips into the fund for the Center for Integrative Health and Wellness.   So many kind and loving people! And we are all rooting for you Nicole!!!!!  MAGICAL THINGS ARE HAPPENING IN THE WORLD! LOVE,  MELINDA”

BTW no, I did not sneak a bite of a Bovine Bakery honey bun, but I did buy some sort of baked energy bar that was slightly out of my new and improved diet and a delicious cup of soup.

My Oncologist

A few people have asked about the people in the video.  This man in the blue shirt is not my dad as many people have asked.  It is Dr. David Gullion, my friend of 20 years and oncologist.  Many of you know that I worked for him as a nanny taking care of his daughter Kaela mostly before their second child Sean came along.  A beautiful family.  The ironic thing is that I was Kaela’s nanny when David and partners were initially setting up Marin Cancer Institute which is now working with Marin General Hospital through the Integrative Center for Health and Wellness.  If anyone wants more information ask me–they gave me a handy flow chart to help me understand when I became a mini-spokesperson of sorts (Fortunately no one has asked me for details because I would likely fumble).  It is a dynamic relationship and folks in Marin are so fortunate to have such a state of the art, cutting edge, and otherwise special facility.  In addition to people like myself who choose to travel for their medical needs.

Which brings me to another point…..I love Eureka Internal Medicine and Dr. Mahoney…some of our local cancer care.  We in Arcata/Eureka/Humboldt County are so fortunate too.

There are many reasons why I am choosing the hardship and expense of much travel and family relocation for the summer .  One reason is Dr. Gullion.  He has stake in me like no other doctor…I go with the person who knows me and wants to keep me alive more than someone who does not know me.   Not that the other person would not give it her all, but I’m just sayin’.  Also, through Marin Cancer Institute I am part of a very cool clinical trial that our local facility does not take part in currently (hot drug herceptin for HER2/neu+, for those who know the lingo.  It is usually used only for HER2/neu -).  Lastly, my extended family is in Marin.  My awesome sister is a teacher with the summer off and her kids (ages 13 and 10) are my children’s favorite people in the world (and mine too!). My grandmother, my aunt and uncle, my mom and step mom.

I go to Eureka Internal Medicine for blood work and a post chemo white blood cell booster shot.  They rock.  Katherine is awesome with the needles.   Sharon is like a mother with her care, organized, clear, and there for me even though I have chosen care elsewhere (everyone loves Sharon).  They have always been great.  If I have an issue while I am here, they will take care of me and that feels awesome.   They are in communication with my doctor down south and we have a protocol for if an issue arises (fever, etc.).  They have a fun tradition of  a community puzzle in the waiting room that the “family” there is really into.  I usually try to get one piece but they are always pretty hard puzzles and they usually don’t leave me in the waiting area long enough.

OK–I have been wanting to say that for a while as many of my “chemo amigos” go to EIM and I want everyone to know how awesome I think it is.

With that finally said…..

The other people in the video at the bake sale.  A few kindergarden mom’s of Marin Waldorf School (where my sister Melinda works).  Old friends who I went to Hawaii with and baby sat for  in my late teens….my aunt and uncle, friends from San Anselmo through my sister.  Quite a diversity and excellent cookie bakers, or so I hear.

So magical things ARE happening.  Like the thorough box of “chemotherapy supplies” awaiting my arrival in Marin from my dear friend Tiffany (water bottle, lotion, lip salve, mouth rinse, the list goes on…every single side effect had a solution in that box).  The adorable corduroy pants and skirt that an Arcata community member sewed for my children and dropped off at the Scoop.  Or the gift bag put together by the staff at our world’s greatest local bank….card games and a sock monkey for the kids, and a gas card to help Garrett and I with frequent travel.  Or the massage gift certificate gifted by a local masseuse.  A free meal from my favorite indian food, Naan of the Above (I have been there almost daily for a week and fortunately the owner is not always there so I mostly get to support them, but what kindness!)  The gift of time and skill from a local “organizer”….to help me stay organized with all of this, and the amazing fundraiser for my cause that Simply Macintosh is doing (64 GB ipod touch raffle). Click here for more info.   Also, some very kind notes and comments from Scoop customers.  Including some beautifully written excerpts form Kitchen table Wisdom, a book I highly recommend.  Qigong with Zena (on the table and off).  The random soup drop off from a friend last night.  The flowers that show up on my porch.  The friends and broader community signing up to help on lotsahelpinghands.com.  The emails from new friends that also have cancer.  The generous donations to the Center and the Breast Health Project in my name.  The woman (also with cancer) who bought 15 tickets for the BHP raffle in MY name (Sayulita, Mexico here I come.  Knock on wood)!  The box of four fun hats that arrived likely just in the nick of time from my Aunt Laila (Garrett’s side) along with the awesome note (she is a survivor herself and you know how I love survivors!) And so much more.

Things like this do feel magical and make my day.  Our family is honored, and we feel so fortunate during this difficult time to be among such spirited and warm hearted people.  And thank you generous reader, I’m impressed if you waded through all of this.

Posted in Musings, Post Cycling Trip/ Chemotherapy and tagged , , ,
23 May 2012
10 Comments

Who Was That Woman?

I am not quite sure who that woman was who took to sleeping with her cycling gear next to her so it would be appealing enough to slip on first thing in the cold morning air. It tended to get me out of camp faster so became a habit. Who was that woman who waved goodbye to her adorable family every morning for six days in order to bicycle that 320 miles to my first chemotherapy appointment? Who braved the narrow shoulder, particularly when there were speeding cars and a steep cliff on the other side? Who pedaled those steep and unexpected climbs after already cycling forty miles on Day 5? And then pedaled another 11 into camp after desperately fueling up on energy bars at gas station in Jenner? Who cycled past this cow and her eight friends?

Not what you want to run into when you are cycling down the coast….

Part of it was just little ol’ me as I have always enjoyed being active and pushing physical and emotional limits, but I also believe I was accompanied by a divine force that I have had along with me since my diagnosis in March, a bit even since I discovered the hardened region that turned out to be the tumor. It is difficult to explain, but my close friends have seen it and inquired about it — a sort of fierceness, grace, tremendous will, and determination that is a bit over-the-top of the pre-tumor Nicole. So, apparently this happens sometimes. It sometimes takes getting a disease like cancer to awaken in this way (others are in a different place and can get here without a disease jump starting them–I suppose it is karma and just where we are all at). We will see how long it lasts and where it takes me.

Thank you to my wonderful sponsors all of which can be viewed and linked to on the sponsor page! They all made the trip possible in some way and I am honored and indebted. A particular huge thanks to our friends Amy and Steve at Alchemy Construction who graciously paid for all of the ‘Night-Night Bus’ gas, camping in State Parks, meals out, and a few necessary supplies. Also Jeff at GoPro camera which enabled us to virtually bring you all along on the adventure flawlessly and provided a lot of fun for us gear geeks. Garrett and I needed to take turns with the GoPro camera and sometimes it was hard to hand it over. Jennifer at Adventure’s Edge provided me an awesome kit to sport, along with a few other cycling related supplies. I loved the wind proof vest–it was essential to keeping my core and neck warm and protected on the coast.

Also a huge thanks to all of my supportive and loving friends and community who provided me with broth and juice to power me during those six days. I think I am the only cyclist ever to carry around two glass Ball jars in my handle bar bag at all times. All of it was delicious–it certainly carried me through the trip. Also thanks for all of the little tokens–I am likely one of the few cyclists carrying around rocks and crystals too, and sprinkling wildflower seeds along the roadside (fun idea, Cheri)!

Last but not least….my pit crew! My helmet is off to them. They kept my spirits high and everything in order. Before the trip Garrett tuned up my bike that had been collecting dust in the garage, got me bomber tires (I did not get one single flat! See, divine force was along the ride). Garrett kept things orderly, washed dishes, did laundry, shopped for supplies, parented all day every day, prepared meals, pumped my tires, walked our dog, made videos late into the evening, powered through technical troubles…the list goes on and on and I could not have done this without him!

Posted in Musings, Post Cycling Trip/ Chemotherapy and tagged , , , , , , ,
16 May 2012
24 Comments

Loving the Road and Encounters

Day 2 and I just limped into Garberville with sore feet and out of water.

Highlights of day 1….

The send off at my home…about 20 friends, delivering juice, broth,wisdom, hugs, and coloring books for the kids.  A handful rode the street with me, some dropped off in Arcata and others rode me to Eureka.  My friend Denise rode with me through town and I must say it was surreal to say goodbye to the last of my supporters!  To be honest though, I have not felt alone once on this journey thus far.

Loleta Bakery.  My first stop.  I met Barney, a 78 year old cyclist who does this route regularly!  Very inspiring.  He was accompanied by two women, one a survivor, the other has a mother with breast cancer.

My delicious lunch was on the house. Jeannie blew me away with her generosity and spirit.  She offered to drive me home from chemotherapy if I did not have a ride.  Her family, too, has been touched by cancer…a member of her family is another survivor who has been rockin’ it for twenty years.

The Avenue of the Giants along the Eel River was beautiful.    I took it slow to Burlington, a Redwood State Park campground just outside of Weott.

The family arrived in the Night-Night bus and we played, enjoyed dinner, and slept great.

Day 2 I continued along the ‘scenic alternative’ to Highhway 101, Avenue of the Giants.  Rolled through the small towns of Miranda and Phillipsville, Redway and now in Garberville.  I just left Chataqua Natural Foods where I met Katie and Nancy….two awesome women (more on Nancy later).

Thanks for all the shout outs, honks (they seem in support not “get out of my way”).  Thanks to the lovely woman in Miranda on the Sportster who had read about me in the Times-Standard, and the Coors truck driver who had also read the article and told me he is leaving soon for Puerto Rico to support his sister with cancer.  So often we are too shy to say hello to someone and tell them we admire them, but let’s do it more often…it just might make their day.

Garrett picked up the ipad today so we should be able to post tonight if we find a hot spot.  Today I ride to Leggett (60 mile day) and tomorrow I cut over Highway 1, the big climb to the coast.

Lots of love, Nicole

Posted in The Journey and tagged , , , , , , , ,
05 May 2012
3 Comments

Juice It Up

It is nice (and oh so Nicole) to keep busy with planning and then riding to keep me from feeling otherwise yucky emotions about having to put my body through this upcoming assault, yet ‘cancer cell seeker and destroyer’ that I am so grateful for.

BUT, the truth of the matter is that I need to take care of myself more than ever right now. In fact, what am I doing on the computer at ten o’clock at night?  I should be dreaming right now.  I have a cough.  I need to wear a scarf when it is windy, and drink broth in the morning, and eat congees, assimilate nutrients, and juice three times per day.  And do qigong, keep grounding, breathe in and breathe out, maybe some acupuncture–taking care of the liver (we all need to give our livers more love!), do some lymphedema massage and exercises….

Now is the time to be building my immune system and strength in order to carry me through what is to come once that Adriamycin and Cytoxan gets pumped into my veins on May 21st.

So, that is where you come in if you have a juicer or like making broth.  I need juice my friends!  And broth!  I envision a cooler full of quart jars.  If you write on the jar or make a label for it I will  know who is nourishing me for that portion of my ride! A jar or two is all I need.  Keep it simple.  If you make a broth for your family just set aside 1 quart jar for me.

Juice is best if super fresh so making it as close to the morning of the 15th as possible will be good.  Carrot, apple, beet…combos with these types of veggies can be stored for a few days without getting funky, whereas juice with a lot of greens does not store as well.  A bit of kale/parsley/broccoli is likely fine though.  I love lemon and ginger in my juices. Surprise me with your favorite recipe!  Made with love will be the best part.
Let me know if you’d like to make me a juice so I know how many Taylor needs to make on the day before departure!

Posted in Trip Preparation and tagged , , , , , ,

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