Pink Madness....Part Deux.

Well, given the responses I have received on my last post about the Pink Ribbon Brigade, I guess I have a few readers out there :)  First, thank you for sharing your comments and insights.  They are always welcome and appreciated.  Second, let me be clear, I am not here to defend my position because I don't have to.  Third, I DO want to say that I am in no way denouncing support of your friends and loved one's who have walked this path by denouncing the Pink Ribbon Brigade.

My question for you to ponder is, does buying a pink ribbon help in any way?  How about a yogurt cup, KFC bucket of chicken or a dozen donuts that are pink and donates a dollar to "The Cure"? (I won't pontificate on the obvious irony of cancer awareness being tied to known carcinogenic products....).  This nasty disease has become one of the single most in-your-face-everywhere-you-turn campaigns I can recall in my life.  I seriously can not even open my electric bill this month without seeing a pink ribbon.  Does seeing a pink ribbon on your electric bill inspired you to do a breast self exam?  I'm just saying....

SGK has done, and continues to do, some good things.  In the early days, I think they made huge leaps for women in the area of breast cancer and helped bring it to the forefront of national attention so that treatment and support existed for women who had little else at the time.  In recent years, I think they have lost sight of what the real issue is here and have got caught up in the coporatization of breast cancer (yeah, I know, corporatization is not a word....yet).   If you do your homework, I think you will find (as I did) that there is more and more money going to overhead expenditures, attorney fees to sue little guys raising funds for their friend and using the trademarked words "The Cure" (yes, they trademarked the words "The Cure"!), then there is going to actual research for a cure.  I am not going to spoon feed you every number and statistic.  If you really want to know where your hard earned money that you dump into pink plastic ribbons goes every year then check out their public financial statements.  If you really, really want to know how much their allocation of pink ribbon dollars has dwindled in recent years to actually finding a cure, pay close attention to the allocation of dollars to research year-over-year (there is an interesting trend of increasing dollars coming into the organization while a concurrent trend shows less dollars going out of the organization to research for a cure....).  Educate yourself rather than falling prey to the emotional tugs a company uses to capitalize on my cootie experience (or your sister's, mother's or friend's).

I received a lot of pink support from friends and family when I was diagnosed.  I was not a fan of pink from the beginning BUT I received each gesture with humbleness and gratitude because I knew the intention behind each of those love-filled gestures was genuine love and support from my people.  I had breakfast at a restaurant this past Sunday and there was table after table of pink clad runners of every age enjoying pancakes after doing "the run" and raising lots of money for SGK.  I was equally touched and ticked off, all at the same time.  I was touched because I know each of those individuals was doing what they believed to be a supportive effort to help people like me.  They probably raised lots of money for "The Cure" by investing their personal time and resources into what they feel is a support mechanism for people with breast cancer.  I was equally ticked off because the reality is that most of their money will go to keeping the Pink Ribbon Brigade in operating capital for the coming year and I will have another October pink ribbon-filled year in 2012 (if I am blessed to live that long).

With all the swaddling of America (the world!) in pink, you would almost forget that other cancers exist except (1) if you have a different kind, (2) you had a different kind, (3) you know someone or lost someone to a different kind.  You might think that breast cancer is the most prevalent (it is not) or the most incurable (it is not).  I find all this pink deeply offensive for all those who are fighting their own battles with other kinds of cooties right now.

Think before you pink or save the tatas.  It's not about pink ribbons and frankly, not many tatas are saved once you get breast cancer.  It's not about saving tatas, it's about saving lives.  Do your research (it takes 10 minutes) and make an educated investment with your time and money into a cause that truly is seeking out a cure for all of us.  My personal organizations of choice are the American Cancer Society, Stand Up to Cancer and Live Strong.  They are interested in research across the board (and a step in the right direction for one type of cancer usually impacts treatments for other types of cancers).

That's all I am going to say about the Pink Ribbon Brigade.  If you are interested in finding out more of the details, here are some other ladies who have walked the gauntlet, done the hard leg work for you and have a lot of great information to share.

• Think Before You Pink
• Pink Ribbon Blues
• Army of Women

I will leave you with an amusing story (perhaps a bit of lore - I wasn't personally there...) of my poster child for Visionary Awareness Month.  In the development phase of the first iPod,  the engineers who worked tirelessly on the prototype excitedly met with Steve - they had finally figured out what they thought was the perfect design for the device that would revolutionize the music world.  Steve was big into design - his vision was not just that products perform flawlessly, they have to be beautiful as well.  He held the iPod prototype in his hand, lifting and dropping his arm to feel the weight of the device.  After a few very nerve-wracking moments for the engineers, Steve simply said, "It is too big."  Of course, the engineers protested and gave every technical reason why it could not be made one bit smaller.  Steve listened but did not respond (he was known as a serious hard ass and an uber perfectionist)...the engineers kept up their arguments for the perfect design they presented. 

Steve got up, walked over to a large fish tank that was in the meeting room and dropped the iPod prototype in.  The room literally gasped as the iPod sunk to the bottom of the tank (no fish were harmed....Steve was a vegan).  Steve intently watched the iPod hit the bottom of the tank and then saw the air bubbles that started coming from it.  He turned around to his engineers and said, "There are bubbles which means there is air in here.  There is room to make it smaller."  It was made smaller and smaller and still even smaller....Nano!

Think Different........

October is Visionary Awareness Month

Disclaimer: Very opinionated and possibly controversial statements forthcoming.  Proceed at your own risk.

I loathe pink.  Pink ribbons.  Pink T-shirts.  Pink stickers that declare "Save the Tatas".  I am not alone in my disdain for what I refer to as the Pink Ribbon Brigade. There are many of us out here that have walked the gauntlet of cooties and feel the same way.   Here's why I think pink stinks....

I don't like my experience to be capitalized upon by others (and there is LOTS of capital being made here, don't be fooled by the inspiring commercials.  Look at the public pink-ribbon financial statements and you will see ever-increasing margins and ever-decreasing investments in the trademarked mission known as "The Cure").  I do not like turning every corner, beginning in the middle of August and lasting well through November, to see pink ribbon posters, pink ribbon Coach bags, pink ribbon face cream, pink-dyed water fountains and countless other pink ribbon campaigns.  Awareness did not stop what happened to me.  It has not stopped what happens to millions of women (and men).  "Saving the Tatas" and "Saving the Boobies" bracelets did not save mine.  I am SO TOTALLY AWARE of cancer every time I look in the mirror - I have the scars to remind me (and, for the record, the scars are not tied up in pretty pink bows).  Pink is so incredibly biased to one, single form of a deadly disease that impacts millions more than just those with cancer in their breast.   Seeing all this pink is like being in a life-altering car wreck and then, as you attempt to move on in your life, having constant reminders of that wreckage in your face 24/7.

I am officially denouncing Breast Cancer Awareness Month and instead deem October Visionary Awareness Month.  Steve Jobs is my poster child for Visionary Awareness Month.  Steve Jobs was a true visionary and a rebel.  He broke all the rules, he dreamed up things that none of us could ever have imagined in our wildest dreams and, as my husband said so eloquently to me this morning, "There's a guy who put a real dent in the universe."  His vision has forever changed the way we live in our daily lives.  Steve used his time on this Earth well.  Even after getting the cooties in 2005, he continued to break game-changing ground by launching the first and two additional generations of iPhones and two generations of iPads.  These tools have revolutionized the way we interact as a human race.  Steve didn't curl up into a ball, become a poster-child for cancer and quit life - he kept going, kept creating and we are all the beneficiaries of his amazing fearlessness and vision.

There are so many visionaries in our lives, famous and not-so-famous, and we need to celebrate them every day.  We need to be visionaries in our own lives and let our unique voices be heard.  This month I want to celebrate the visionaries in my daily life with a tip of the hat here:

• My amazing husband
• Someone who believes that the little things are worth writing down (thank goodness for us!)
• My favorite joint to hang out on Saturday mornings and get my fill of inspiration, diversity and damn good coffee!
• Kickass Kung Fu Wellness Warrior Goddess
• A man with a passion for the ever so simple
• My brave and talented friend
• One of my favorite painters who I am lucky enough to call my friend
• Another friend, an amazing painter and DJ

.....and so many more that don't have websites or blogs but impact my life in meaningful ways nearly every day.  You know who you are....thank you for being amazing and rebellious!

I want to leave you with two incredibly visionary statements from MY poster child for Visionary Awareness Month.  The first is a portion of Steve's commencement speech he gave at Stanford.

"Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. 

Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.  No one wants to die. Even people who want to go to heaven don't want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life's change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.  

Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.  Stay Hungry. Stay Foolish."

....and the second one.....

"Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do."

--Amen.

....And then there was one.

So, here it is, nearly a year later.  This is not the EXACT date but in the ball park.  How can I forget when the Pink Ribbon Brigade will never let me forget this time of year was when I heard the cooties call.  I won't give cooties so much power that I mark the day with a special acknowledgement of it invading my life.  I am celebrating my life today, everyday.

I decided I wasn't going to come here on an ongoing basis to pay continued homage to cooties.  However, I think it is important for others out there who come across this little blog to know that many of us live and thrive and move beyond the events of cootieville.  We live full, happy, healthy lives and put the past where it belongs, in the past.  I have met dozens of people and read about many, many more who were way worse off than I was and have lived beyond the events of cancer and all of it's treatments (some who are cancer-free and others who are not).  I think it is important that those of us who have moved on let others know our successes so they know they can do it too.  There is so much out there about the recurrences, the suffering, the ongoing torture..errr...treatments and so little about moving forward to health.  In honor of putting out the good vibes in the world, I will post here once a year with an update of all the good and to let everyone out there who may be struggling with the demons that you can get past them.  I just hope I can remember my Blogger password this time next year so you all don't think I kicked the bucket....

Life.  Life is good.  Life is busy and full.  It has it's ups and downs and it feels normal in many ways (well, except for the chemo every three weeks and the various follow up appointments).  I had a round of Herceptin today which marks one more off the regimen and only three more to go.  Poetically, my last round will be the day before my 43rd birthday....now THAT is a birthday present!  A woman in the chemo room who was bald and in the middle of ACT chemo (ACT=HARSH) made a comment to the nurse that I must be scared since it looked like my first time (I think she made this assumption because I had hair and a few pounds on me).  My nurse laughed and said "Oh no honey, she's a veteran around these parts!"

Last year at this time I was gathering up all my punk rock rebellion to face down whatever I was going to have to face in the treatment realm.  This year we are planning a kitchen and bath remodel in our lovely little home after 12 years of talking about it.  Isn't life funny that way?  Vynnie is starting up a new business venture (more to come) and I get to see that blossom into being.  I have learned more balance.  Save up for a rainy day but spend some on today because it is a beautiful day and deserves to be celebrated.  I am thankful for the little things (nectarines that are perfectly ripe) and the big things (health and family and friendship).  I try not to get so wrapped up in the drama that we all tend to create out of daily life.  I have learned to be accepting of others but also to set boundaries that are healthy for me.  I spend my time more on the important things -the people, the places and the activities that feed my soul and less time spent with energy-sucking people and unfulfilling activities.  I deeply embrace and am grateful for every opportunity to support others who are being touched by this disease in some way, to honor all of those who gave to me so selflessly when I needed it.

Courage.  I had an interesting conversation the other day with someone who called me courageous.  Although I thought it was a heartfelt gesture, I don't think I am courageous.  I did what anyone would do to save their ass - I fought like a cat getting dunked into a bathtub.  You would too.  It's our instinct to survive.  I think the word courage belongs to those special people who know the dangers of the acts they are about to engage in for the greater good of others and they do it anyway.  To me, courage is an act of selflessness.

When I think of courageous people, I think of my husband who stayed here to fight by my side through the ugly, messy, day-to-day business of cancer even though it would have been easier for him to not see the ugliness of it all.  I think of the many, many family and friends who put their own fears of illness and mortality aside and loved me anyway, even though it might not have been easy for them.  I think of policemen, fire fighters, soldiers and chemo nurses who know the dangers of the path they choose and do so anyway for the greater good of others.  That, to me, is courage.

Beliefs.  I have found that the most important ingredient in anything we want to achieve in life is to first believe that it is possible.  In the face of all the cancer center commercials, billboards, newly diagnosed friends, Pink Ribbon Brigade advertising, stories of people dying everyday on the news from this "cruel" disease - believing that you can live a great life with it or even (gasp) heal from it, remains a daily mental exercise.  I am here to say that I believe that I have been cured from cancer and that, even though mine was in the nodes (gasp), stage 3 (gasp!!) and HER2 NEU positive (GASP!!!), I can remain cancer free for the rest of my life.  I believe cancer starts in our thoughts and emotions long before it ever shows up in our cells.  Even after it shows up in our cells, I believe a long and fulfilling life can be lived along side the cooties (GAAAAASSSSSPPPPPP!!!!!) like my Number One Kickass Kung Fu Wellness Warrior has done for so many years.  What do you believe in?  It is never too late to begin new beliefs that feed your life in good and positive ways.

So, in this first year....

• Eight rounds of ass kicking, cootie killing chemo ($$$$$$)
• Roughly 18 rounds of other not-so-toxic chemo ($$$$$$$)
• Five surgeries ($$$$$$$$$$$$$$$)
• Four echocardiograms ($$)
• Two PET scans ($$$)
• One MRI ($)
• Countless blood tests, band aids, medical tape and rubber gloves ($$$)
• Cancer free and here to tell the story........priceless!

Moving Forward...

I feel like the time has come to move forward.  When I come to this place, I can not help but think about cancer.  And, while I love the life lessons I have learned through this process of becoming evermore human through a very challenging journey, I want to be in a space where I am not constantly looking at what has happened.  Cancer, and healing from cancer, is not my calling in life, it was merely a catalyst in my life to wake me up to certain things.

The process of cancer (because, even when you are "cured" it is still a daily, hourly, minute-by-minute process of choosing wellness over illness), has humbled me and taught me more in this tiny spec of time that occurred on the universal continuum than any other single event or cacophony of events in my lifetime.

I have learned:

1. Responsibility to myself.  Those who know me may be laughing at this statement because I appear to be a highly responsible and accountable person on the outside.  And, in some regards, I am highly responsible, especially when it comes to my commitment to others (in the form of relationships, financial obligations, work commitments, etc.).  Through this cancer process, I am learning to be accountable to myself - accountable for what I put in my mouth, what I spend my time and energy on, who I choose as my health care provider, my chosen path to wellness, my beliefs about healing and the thoughts I think (positive or negative). 
2. In the end, we are all the same.  Money, power, ego, big houses, degrees, fancy cars, skin color, religion, ritual, politics...it is all just the things we wedge between us and others to keep us separate.  At the end of the day we all truly want the same things - to be well, to be loved, to have peace in our hearts and to be heard.  Today, I am well, I am so incredibly loved, I am at peace in my heart and I am heard.  All the rest is just icing on the cake of life.
3. I always have a choice.  This is such a broad-reaching lesson for me because it touches on so many areas.  Before cancer, I trapped myself in so many ways - through perceived obligations and guilt, through what society tells us is "right", through the expectations others placed upon me, through the "should's" and "ought to's".  I now know at my deepest core that I have a choice over how I choose to perceive life and perceive the events that unfold within the context of my life.  I have a choice of how my body is treated (by myself and by others) and what treatments and healthcare providers I interface with.  I have a choice on how I let others' energy impact me (or, more importantly not impact me).  Ultimately, I have the choice to be a victim or to be the captain of my own life, making the tough decisions and taking responsibility for them, regardless of the outcome.
4. Be in the moment.  Ha!  So simple and yet so complicated!!  I am a planner so I think to the future.  I am a perfectionist so I revisit the past to "learn from my mistakes".  I make a lot of mistakes and I have a long and glorious future ahead of me so...that doesn't leave much time to be in the moment.  Let me say that again....BE IN THE MOMENT.  I (we) can spend so much time planning and regretting that we never truly stop to witness what is right before us and to fully digest the magnificent moment we are in N-O-W.  Sometimes it is hard to be in a moment of pain or anger or unpleasantness (like chemo) but it is part of this ride called life.  In those painful moments, when I could fully and completely surrender to what was happening, I felt a sense of peace I had never felt before.  In this very moment the skies are blue, the breeze is blowing, the peonies are in magnificent bloom, I am comfortable, my laptop works, I am cancer free, my husband loves me, my family is well, my cat is lying beside me and all is well.  I am not re-suffering the chemo or pain of the past, I am not looking forward to upcoming surgeries or potential challenges that inevitably arise as part of life....I am just sitting in the breeze looking at the peonies and that is truly, fabulously awesome!
5. Love is the answer to any question.  I know, I know, it sounds so mushy but hang with me here for a minute.  Much of the crap (make that ALL of the crap) that arises in our lives can be solved with love (compassion, empathy, understanding...plug any of these words in for the word love).  Whether it is to love yourself enough to take care of your body and mind or loving the process of cancer enough to be present and bear witness through it and embrace what it brings to your human experience - love is the answer.  It doesn't mean we have to be someone's doormat or tolerate cruelty - it just means that if we can put ourselves in a space of love (....compassion, empathy, understanding....) we can probably eliminate 99% of the drama in our lives, no matter how intense it may seem.  Fear, ego, anger - these are all just ways we "protect" and attempt to insulate ourselves from the unpleasantness and unpredictability of life.  We have no control over what happens outside of us, all we have control over is how we choose to engage with it.

One of the gifts that has come from my dance with cancer is that I have found a passion for writing.  It has been such an incredible and creative vehicle of sorting out what "all of this" means and helped me to look at things from many different angles.   Writing is to my life what the uber geek is to solving the Rubik's Cube.  I am writing a lot offline and I am playing with the idea of writing in a different space online.  If I do come to a point where I do have another space online I will be sure to let you all know.

Oh, and one other thing I learned....if you look hard enough, you can find a picture of ANYTHING on the Internet (even a cat solving a Rubik's Cube).

I have added a couple more books to the books tab that have been profound for me in terms of healing Embrace, Release, Heal by Leigh Fortson and What I Wish for You by the fabulous Patti Digh.  Don't have cancer?  Read them anyway - they are filled with life lessons everyone needs to hear at some point in life.

I will leave you with this quote,

"Man's (Woman's) mind, once it's stretched by a new idea, never regains it's original dimensions."  

--Oliver Wendell Holmes

A Royal Flush

I feel like I just won the professional poker tournament in Las Vegas with a royal flush.  Life is good....really, really good.  It is normal in so many ways and that feels so damn good!

Last week I had my first follow up PET scan to see if there were any cooties hanging out in my body.  Everything came back clean and so did my blood work - great news!  I will have to do these scans about every 6 months or so, along with blood tests, for the next couple of years to keep a close check on things.  As a good friend reminded me recently, this is a marathon and not a sprint.

When the doctor's office called to tell me the results from the scan they said "Aren't you happy?"   I said, "Sure, I guess I am happy.  I mean, I didn't expect anything other than what you are telling me now."   They seemed surprised by my reaction but I truly didn't expect anything other than clear results.  And yes, I am super happy that they are what they are.

Not only did I get clean test results BUT I got my first hair cut last week!  Well, technically, it probably would only qualify as a barber shop visit - there wasn't a lot of hair cutting involved but my hair dresser did her best to keep me there for a good 20 minutes (cutting one little hair at a time) so we could catch up.  I was feeling ever-so-normal with the hair cut until she insisted on not charging me because she didn't feel right charging anyone with less than 2 inches of hair....Ha!  I'll show her, I will show up next time with more hair to cut.

Now, maybe I am getting a little too big for my britches but I even went and bought some hair products today - mind you, I don't have enough hair to put any product in but, some day soon I will.  And, when that fateful day arrives I will have all sorts of fun products to play with.

In other non-health news, we are busy around the house with tons of projects.  We had some roof damage in that epic hail storm last Fall and just got around to having the roof replaced.  I am sure glad I did not have that done while I was home recuperating.  About 20 minutes of roof work on the first day sent me running out of the house to the office at 7 AM.  Of course, putting on a new roof calls for a new color of house paint.  Do you know how many shades of Sage Green there are?  I do.....and we are trying out every one of them before we decide on which shade to go with ;o)  My husband is a saint for humoring my discerning eye.

So, that's all the news fit to print for now. 

You Can Go Back Home Again...

I look forward to the day when I can use my paid time off from work for vacations and relaxing instead of spending the day at a series of medical appointments.  I took this past Friday off as I had several medical appointments and follow-ups scheduled.  The first was for a physical therapy evaluation for Lymphedema.  When I had my surgery back in February, they had to remove all the axilla lymph nodes on the right side of my body because three nodes had tested positive for cancer in my initial biopsy (they came back negative after chemo....hooray!!!).  This is standard treatment when nodes test positive to prevent any spreading of cancerous cells through the lymphatic system.  When lymph nodes are removed, the lymphatic fluid has to figure out a new way to move from the arm to the central lymph channels located in our back, chest and abdomen.  Unlike blood, which is circulated through our veins with the force of our pumping heart, our lymph is a passive circulation system which is moved through lymph node "gates" by muscular compression against the lymph vessels.  If the body can't figure out how to move this fluid to alternate "gates" then it begins to build up in the affected area which is called Lymphedema.  One of the very early signs of fluid build up, even before it becomes visually noticeable is a heaviness or aching in the affected limb.  Well, guess who has some dull aching in her right arm.....?

Caught and addressed early, this condition is very manageable and even reversible in it's early stage.  I am in the earliest stage and fortunately we have a great treatment center for this specific condition in the cancer center I go to for my other treatments and testing.  I was evaluated for my staging Friday which consists of measurements of my fingers, palm, wrist, forearm, elbow and upper arm on both sides.  Once the measurements are taken they plug the numbers into a fancy little algorithm and spit out your percentage of fluid retention between the affected and unaffected arms and stage it.   I was taped up with some magical Kinesio Tape from my elbow to my neck, which lifts the top layer of the skin just enough to direct fluid movement in the arm.  I will now have a battery of physical therapy sessions for the next 2-4 weeks, 2-3 days a week where they will manually move the fluid out of my arm with series of compression motions and then wrap my arm in compression foam and bandages which look like ace bandages on steroids.  I will have to wear these bandages 24x7 during active therapy except for in the shower.

The good news is we caught it early and there is great treatment nearby.  Ongoing, anytime I fly I will have to wear a compression sleeve to keep my arm from swelling (lack of air pressure in flight cabins can cause swelling in the affected area).  Other things that can cause swelling are extreme heat (no more wild hot tub parties), bug bites or cuts (darn, no more mosquito hunting), extreme stress on the arm from physical activity (there goes my Olympic gymnast career) and dehydration (bye-bye bacon, alcohol and distance running).  Oh, go on, I know you are jealous of these new arm accessories I will get to sport on the cancer fashion runway!  I will have to bust out my Bedazzler and put some bling on an otherwise unsightly medical garment!

In other news, my oncology drama has now come to a happy ending.  I am back with my beloved Dr. O and was able to meet with her in her new office after my physical therapy evaluation.  It was good to see that some of her trusted staff from her other practice have followed her over, making me feel more than ever that I am in good and caring hands.  Dr. O, Vynnie and I had a really good dialog (I even got another hug...remember, she is not a hugger!), I got a check up and some orders for tests (echo cardiogram, PET scan and a dye test for my port...more on that in a minute).  I know I am in the best care, for me, and it felt like going home again.

Unfortunately, my port (the little Matrix-like device in my chest used for infusions) seems to be acting up.  Sometimes these devices come apart and have to be replaced.  To evaluate whether the port is functional or not they will do a radiological dye test and see if it is intact and working.  If it isn't working then they usually will replace it however, since I am done with chemo and only doing Herceptin, I may opt to have the little bugger taken out if it isn't working anymore.   They can administer Herceptin through an arm vein as it doesn't destroy the veins like the chemo does. Oh goody, one more medical test waiting in the wings that I haven't test driven yet ;o)

Some of you have asked me about the events that transpired that led to Dr. O leaving the practice she started 30 years ago, why I choose not to follow her at first and then changed my mind, and then moved to a completely new oncology practice after trying to follow her and now, after that long and winding journey am back with her.  Here's the thing....none of that detail is really important in the big picture.  Here is what IS important:

1. Decide what it is you want from your selected doctor and their support staff.  Do you want warm and fuzzy, do you want a pretty office, do you want efficient, do you want competent....what is most important to you and in what order do these items fall?  In dealing with a life threatening condition like cancer, I need a doctor who is in good standing with the medical board, who really, really knows their clinical area, is present with and focused on ME in our meetings, reads my charts before they meet with me and isn't too busy to dialog with me on treatment options.  I need their staff to be A++ because the staff is the critical key to keeping me on my treatment schedule, gets my tests referred correctly, minimizes billing issues that I have to get involved with on insurance and puts these potentially deadly drugs into my body.  For me, staff is just as important as the physician.
2. Trust your gut when you choose your doctors. I have to resonate with my medical team.  Some of my team I resonate with more than others but I have to get that gut feeling or I move on.  It doesn't mean that doctor is good or bad, it may just mean they are not the right fit for me.  I resonate and respect every doctor on my team today.
3. I can not emphasize this one enough - always, ALWAYS check your doctor's standing with the medical board.  I don't care if they resonate with you like they are your best friend in the first meeting, if everyone who has your condition says they are the best, if they have a gazillion years of experience,  if they have been published in medical journals, if they are listed as a top doctor in their field in the country for decades, if they created the cure for cancer or if they are a family friend - check their standing with the licensing boards (state and national).  I am not being overly dramatic when I say that this 5 minute research process may just save your life.  It is free and it literally takes 5 minutes.  I use this site but there are several out there.  You plug in the doctors' name and location and it will bring up a review page.  At the top of that review page there is a link to the medical licensing and through that medical licensing you can see where your doctor attended medical school, where they performed their residency, what their specialty is, if they are in good standing with the state medical board, if they have any formal complaints filed against them (including the details of what those complaints are) and/or if their medical licensing is on probation or revoked (and why).  Typically, state records are retained online for the current 5 years. To check national licensing go to the American Medical Association.  

Here is what I will say about all that transpired in my oncology journey - the nursing and support staff at my old oncology clinic is A+++++ and took care of me like I was a part of their family.  They have set a bar of excellence for care that any office I go to from now on will have a tough time hitting.  I am forever grateful for their excellent care, their compassionate support and their exceptional technical skill.  I suspect that I will maintain personal connections with several of them for the rest of my life. They are a rock star team of professionals that I had a VERY hard time parting with.

I will also say that Dr. O is the best doctor I have ever had and that I sincerely trust her with my life.  She is an irreplaceable part of my Kick Ass Kung Fu Cancer Crew.  She is a top-notch, nationally recognized doctor in her field, a trail blazer for women in the medical oncology arena and the absolute epitome of professionalism.  She stands barely 5 feet tall and weighs less than my right leg but Dr. O is a Kung Fu Cancer Master in combat boots and pearls.  Someone once said to me that it really doesn't matter who the oncologist is because they all use the same treatment protocol standards.  I respectfully disagree.  Women I have met along my journey who had similar diagnostic profiles to mine starting out but had different oncologists that prescribed different treatment paths, ended up having less desirable post-surgical results and a lot more issues when in active chemo.  Sure, some of it is my physiological response and tolerance to the drugs. BUT, much of my health is directly due to the decisions my doctor made about which drugs to use, how much to give, how frequently to give them, how many rounds to do before surgery and all along the way making sure I did not get sick, that I did not get any infections and that my vital organs did not go into failure or become permanently damaged as a result of treatment.  THAT, is the difference between a good doctor and a GREAT ONE.

Happy Mother's Day

This post is dedicated to all the moms out there who have supported their children through a diagnosis of cancer, who have been diagnosed with cancer and moved through the journey while still being a mom and/or who are moms and still find the time to be amazing friends and supporters to those diagnosed with cancer.

I could not have made it through my journey to where I am today without my mom and her unending support, immense love and many, many, many hours of listening to my daily, trivial, technical treatment updates.  Whether you are the mother of a young child or an adult one, you never want to hear the words that your child has cancer.  I know that my diagnosis was incredibly hard for her to face but she did so with the love, support and grace only a mother can give.   She kept a stiff upper lip and sense of humor on the days I was crumbling under the weight of all that comes with the words "you have cancer".  She spent many hours on the phone and in-person just being with me when I needed that closeness.  She helped distract me when I would get too wrapped up in my pity party and was unable to see all that I have been blessed with.  She made me laugh when all I thought I was capable of was crying.  She gave me strength when all I felt like doing was curling up into a ball of nothingness.  And she enlisted the Catholic nuns in New Jersey to wrangle all their powerful prayers for me.  Blue Iris' are her favorite flower and so the flower above is for her.  I love you mom!

I could not have made it through this journey without the love, prayers and support of my mom-in-law aka "California Mom".  My California Mom sent me notes of encouragement, prayers for grace and healing and made a road trip just to "pop in for a visit" with my amazing Auntie Norma in tow and they both showered me with lots of love, hugs and prayers of healing.  When California Mom hugs me, I know everything is going to be just fine!  I love you Cali Mom!

My Aunt Sandi, who is herself a mom and a grandmom, sent us so many emails, cards and prayers of love and support.  Aunt Sandi is gifted with that sixth sense of knowing just the right thing to say at just the right time.  On those days where I felt isolated, alone or just "over the whole cancer thing", Aunt Sandi's notes would pop up in email or a lovely handwritten card would appear in the mailbox with just the right words to keep me going.  I love you Auntie Sandi!

My Aunt Lynn was my Normalizer.  When I felt my roughest and most out-of-sorts, Aunt Lynn had us to her house for Thanksgiving last year and, with the help of my extended family, made both Vynnie and I feel so normal during such an upside down time (it was about the time of chemo round 5 and all the suckiness that came along with it).  Aunt Lynn was there to hold my hand before they rolled me into surgery this past February, keeping the mood light and keeping Vynnie company during my five and a half hour surgery.  Oh, and she got Vynnie hooked on iPad Scrabble in the waiting room!  I love you Auntie Lynn!

My beautiful and kind sister-in-law Ashley who kept me smiling with lots of silly photos and anecdotal updates on my two beautiful nieces.  I received many cool art projects from my nieces in the mail over the months that now decorate my fridge and office.  I love you and think you are an amazing mom to those girls!

To my strong and determined sister-in-law Jennifer who is running in the Texas heat in two weeks to raise money for breast cancer awareness and who has been so supportive over these many months with her emails and notes.  I love you and I am manifesting cool weather for you in June on your run!

To each of my fabulous friends and colleagues who is a mom (and even to those who are not) who made time in your very hectic and busy lives to cover my workload while I was out on leave, to text me, drop me a note, chat with me on the phone, send me a card, pay me a visit, give me a hug, make me a care package, have a meal with me or have me to your home.  I love each and every one of you and am grateful every single day to have such an incredible group of women in my life.

A super-special shout out to all the ladies (and gents) from work that participated in the Relay for Life on Friday 5/6/11 for the American Cancer Society.  This crew of awesomeness worked tirelessly for weeks on end drumming up donations for the American Cancer Society and ended it with an all night Relay for Life this past Friday.  They stayed up ALL NIGHT as at least one member (sometimes more) walked the track in a show of support for everyone who is affect by cancer.

To all of my care providers who are moms, grandmoms, aunties and sisters and took care of me like I was a part of your family.  I am so humbled by your kindness, skill, commitment to healthcare and to your immense generosity of spirit.

And finally, to all of the moms out there that I have met who go through this process and keep the ugliness of cancer at bay for the sake of their children, keeping the brave face on while they are melting inside and giving their kids a sense of normalcy during such a challenging time. Whether you are dealing with your own cancer diagnosis or the diagnosis of a child, I am truly, deeply inspired by you and stand in awe of your grace, beauty and strength!

Birthday, Boobies and Beams of Light

Today is Vynnie's birthday (happy birthday honey!).  We didn't have any special plans for today since it was ALL BIRTHDAY... ALL WEEKEND - art opening/gallery visit, brunch with friends, dinner with other friends, coffee with other friends, fun movies, slept in late - it was a really fun and relaxing weekend all around.  It's so good to feel well and be able to enjoy the time with him and our friends.  Oh, and the gardener got a new greenhouse for his growing farm of baby seedlings.  We will be able to feed the entire neighborhood out of our garden one day soon!

Little did he know that he would have the time of his life this morning taking me to my new doctor....NOT!  A few posts back I had mentioned that my beloved oncologist had moved practices.  In a long and winding road of events, I decided that it was best to start with a new practice and a new oncologist.  I did not make this decision lightly - it was very, very difficult to leave the practice or the oncologist.  The practice she had been with had an incredible staff and they took such great care of me.  On the other hand, when you put your life in someone's hands, you develop a bond and deep level of trust with that person that is very unique and very hard to replace. 

In the end, through a series of events that occurred over the past several weeks, I thought it would be best to move to a new practice and a new doctor.  I was deeply torn but determined to make the best of a not-so-great situation.  Well, we went to that new place today and, while they were all very nice people, they were not a good fit for me.  I had not originally scheduled my appointment for today, my appointment was supposed to be yesterday but, 5 minutes before my appointment (I was literally in the parking lot!) the office called to let me know the doctor had to reschedule.  I get that things happen but this wasn't a great first impression for me...really, 5 minutes before my appointment you're going to cancel?  Turns out the doctor had a cold or allergies and wasn't feeling well.

So we went back today and everything was just sort of off.  The office staff seemed disorganized (even though I was the only patient there) and it was pretty obvious that no one had really familiarized themselves with my chart even though I made certain they had all my paperwork far ahead of my appointment.  There were lots of pretty flip flops and expensive handbags for sale throughout the office and the staff wore cute little bracelets that said "I Love Boobies".  Hmmmm.......Do you not love me because I don't have them anymore?  I was interviewed by the PA/NP with her back to me the whole time.  Hmmmm.....not great people skills but perhaps she was having an off day.  Then the doctor came in and never called me by my name (but rather by names like hon, sweetie pie, darling and dear) and spent more time telling me about her personal issues than discussing my health status.  Hmmmm.....this is not looking so good.  The tipping point was when I went to get infused and there was a 3-year-old child playing in the infusion area (no parent anywhere around) who had two televisions on full blast with cartoons while also running around.  Kids really should not be in the adult infusion unit (both to protect them from the obvious dangers of needles, deadly drugs and other sharp objects, as well as to allow the patients being infused to have some level of peace during a stressful procedure).  Hmmm.......make sure child does not trip over IV unit while running around and rip needle out of my port.  So, I smiled, paid my bill and left knowing that I was back on the market for an oncologist.  Stay tuned for further details...

In other news, I have made a decision about radiation....I am not going to have it.  While it is a very personal decision, I am writing about it because I think it is important that we be advocates for our health and not jump to making fear-based decisions about our treatments.  Making a decision to not have radiation has been an exercise in self-advocacy.  I believe doctors make the best recommendations they can based off statistical data that is available.  When I pressed them, with the specifics of my cancer type, my treatment path, my chemo response and my surgical pathology results, none could make a definitive recommendation specific to my situation.  As of today, there are NO clinical trials past or present that review the effectiveness of radiation in women who have my treatment path and response.  Yes, I am a pain in my docs' backsides at times but I think they respect that I don't blindly take the recommendation without a thorough and educated discussion.  I did my homework with the radiation - I spent a lot of time digging and reading and digging some more.  I discussed it with my docs, I discussed it with my husband, I meditated on it and, in the end, I am trusting my inner voice on this one.  I think we can become so afraid of what will happen if we don't do "everything" that we end up over-medicating, over-treating and not listening to our bodies and our instincts. 

And finally, just a tally on where I am today:

• Today (4/19) is 3 months since my last chemo infusion.
• My hair is a half inch long and my eyebrows and eyelashes are back.  So far my hair is coming back the same color as it was when it left (ok, technically it was blond when it left but that is because I dyed it) and it is coming back straight so far.  
• The neurological issues I had from chemo are gone.  I can play with knives, play with fire and levitate again without any danger to myself or others.
• My eyesight has cleared up.  Did you know chemo messes your eyes up too?  Because it dries all the fluids in the body, it bends the inner lens of the eye during treatment.  My vision would go blurry at the drop of a hat and stay that way for 5 minutes or 5 hours....nothing I could do about it.
• The neuropathy in my hands and feet is 95% gone (just a bit of numbness in the tips of my toes)
• I can eat and drink whatever I want (and taste it!)
• I can work a full day without feeling like I ran a marathon.
• I can workout again!

• This Wednesday (4/20) will be 9 weeks since surgery.
• I have no pain or swelling at all from the surgery left.
• I have one more tissue expander fill remaining next week and then will be done with that process.
• I have full range of motion of my arms with no pain or tightness in any position.  
• I can do yoga in the mornings with no issues.

Life is good!!!