Murphy’s Law

You’ve got to love it when you are so careful to recognize minute changes in your life that they continue to become clues towards cultivating happiness!  Seriously, it is amazing.  So, as the last entry left us, I had finally decided to go back to Femara only after attending the San Antonio Breast Cancer Symposium with 8 thousand research clinicians, trying an alternative therapy tea, and realizing that knowledge can be empowering but accepting that knowledge sometimes takes time.

As it turned out,  after I started Femara, it would take exactly one month to change my life yet again.  Within that time, I was in Seattle for the Conference for Young Women known as C4YW with my fellow survivor BFF who shares my birthday even though she is 16 years younger than me.  Let me tell you, she is fabulous, plus she also went to Texas A&M.  I adore her.  Seattle reminded me just how much I missed Colorado.  But we made up for my sadness by visiting the Boeing Aviation Plant where I’ve never seen so many planes!  I didn’t know until I got there, that being there would be on my bucket list.  I could not get enough of it’s enormity.  Trust me when I say, if you’ve loved airplanes and airports since you were a kid and adore flying, then you must plan on visiting Boeing and taking the tour.  I even got a Boeing smushed penny complete with a bracelet that holds the penny!  Plus, you know you are exactly where you are supposed to be when you meet a new friend when registering for the real YSC Tour de Pink West Coast when you find out that she lives in Spain and after talking about living in France, she asks exactly where I lived.  After I say “Sciez” like she will not know of this little village on the lake, her face goes blank and she puts her IPHONE in my face revealing a text she had JUST received from her husband telling her that he’s in Sciez visiting a friend at that exact moment.

Really.  I read the text and then my face went blank.  We did the Now way? No, No way! Really? OMG Really!  It was thrilling for me.  I will visit Sciez someday soon.

Being at the conference made me feel anxious and frustrated because I felt as if I was missing something.  What I didn’t know was that the next day, I started my period! When this happens, we all know that you can not take Femara because this means you are not in menopause and makes the drug useless for you.  But for some reason, I was still confused in my head because my OB/GYN and a Fertility specialist both confirmed that even though I would have a period, that I was in fact postmenopausal, but now I was just not buying it anymore.  Things change.  Something is just not right.

Then, after less than 24 hours in Houston, I am flown to the East Coast for the Department of Defense Breast Cancer Review where I am one of four patient advocates for the Molecular Biology Genetic Panel.  Having arrived early, I stayed in my room to watch The Makers on PBS that just blew my mind because it was so good.  But the rest of the week I felt like I was in my own scientific heaven-like experience.  My panel of researchers were mesmerizing as we discussed breast cancer research.  I was there for my expert opinion and I was shy at first but soon got used to making my point and that felt great because we were all truly listening.  That was my first job since I was diagnosed and it was exactly what I needed.  I left there completely inspired, excited and happy to be alive.  I had found my professional voice and used it!

As soon as I returned, I had to go to Rice for class, then to the Ballet, and then to the Capitol in Austin to advocate for the inclusion of educated patient advocates within CPRIT when I emerged from the parking garage feeling like I was done and could finally take a breath.  What now? All I knew was that I needed to drive to YogaYoga West and I did.  My car just went there knowing that I couldn’t afford to register for Gurucharan’s two-day intensive class, but I went anyway.  It was almost my birthday and I’d decided that I really wanted to spend it there with them.  I was prepared to call my mother and tell her why this was exactly what I wanted for my birthday when I checked my account and cheered seeing that a long-awaited deposit had finally arrived!  I walked in thrilled that I was going to stay and attend his class.  Dr. Gurucharan Singh Khalsa lives in Oregan and usually speaks to large groups of 300 or so, but for two full days I sat 8 feet in front of him with people from all over the country totaling less than fifty.

On my first day of class while engaged in short (11 minutes) and long (30+ minute) meditations, I could feel my right carotid artery pulsing with what felt like sludge as I focused on breaking through any unconscious blocks.  It actually hurt, as I would rub my neck.  It was a slow and throbbing feeling like motor oil was trying to venture through my veins when it occurred to me later that night when taking my supplements that I had taken a Femara the night before!  Like I said before, my doctors kept telling me that I was in fact in menopause again, when I finally realized that they don’t know me NOW!  Finally, I put the Femara back in it’s bottle after taking it out of my weekly pill dispenser.  For my birthday, I was completely enthralled to continue class fully empowered by my progress.

When I got back from Austin, I made an appointment to see my Oncologist and that’s when I told him the news and finally agreed with him that I was in fact out of menopause and needed Tamoxifen again.  But this time I wanted to try taking 5mg twice a day to see if I could tolerate it and he agreed!  Learning this from SABCS, my doctor was thrilled to get as much of the drug into me as possible at any rate.  Right now I am taking it only at night and depending on how I feel in a few months, I may add in the morning dosage.  But knowing that I’ll be on this for up to ten years, I am in no rush.  Plus, the medication is $10 dollars per month.  Like Dr. Yen says, anything is better than nothing.  So, I am trying to be consistent and taking it slow this time.  And you know what, I’ve never felt better!  Well, for now!

Rodeo Reflection

It’s been four years since I was diagnosed with breast cancer and I can’t help but reflect on how the Rodeo has affected my long term survival treatment plan!

First, I have to start by telling you that when I showed up to see my Oncologist in late February of 2009, I was wearing my original Nacona Roach Crusher pointed toe boots, along with a denim skirt and black top because I was on my way to the Rodeo!  I remember swinging my feet from the top of the exam table like a kid, just waiting to see Dr. Yen.  I had already had my lump removed and not knowing anything, I figured that I was done!  I laugh now because it was during this appointment that I heard the c word.  No not the c-ancer word, but the c-hemotherapy word and THAT word was like a punch to my head.  I’d been a yoga teaching, food guru who would never even think about taking prescriptions, much less toxins that caused cancer.  But after Dr. Yen showed me adjuvant print outs on me and my cancer, I was ready to schedule my first round.  If I didn’t do anything after having a lumpectomy and went back to my world, then my chances of having more birthdays went considerably down.  And I wouldn’t hear of that.  I cherish my birthdays.  If you know me, you know that I celebrate for months!  Even today, I am thrilled that my birthday is in less than one month!  So, basically those boots that an old boyfriend and I purchased while in College were still with me when I heard the c word.  Needless to say, I went straight to Pappasito’s to order a top shelf margarita and share a basket of chips with some lovely random ladies next to me while waiting for my date to show up and take me to the Rodeo.  We even got to ride the wagon around the rodeo grounds as they kicked off the night announcing our names.  Talk about a Kick-Off to Chemo!

Fast-forward to the next year, when I spent my birthday drinking to many Fairy Tales that I finally puked in the middle of the night.  I never puked once while on chemo, but it was to much champagne and St. Germain that finally made me lose my cookies.  I laugh because that is just the way I’d want it to happen… while celebrating with friends and double dipping into the chocolate fountain!  That is also the year that I went snowboarding in Colorado with a girlfriend who soon announced that she was on a Rodeo committee!  She inspired me to think about joining one.  But which one?  That year flew by.

The next year, 2011 I spent my birthday in the airport trying to get home from Barcelona, Spain, which is one of my favorite places on the planet.  The week prior to my birthday was spent at Sagrada Familia, which is Gaudi’s church and also on the beaches of Barcelona gazing at Frank Gehry’s original metal fish while eating tapas and having a general great time.  We even had an over-the-top dinner at EVO with hand-made Cava or Spain’s version of champagne.  Actually, champagne is a region in France so the Spaniards had to call their bubbly version something else.

In 2012, I just knew that I wanted to spend my birthday at the Rodeo, so me and a friend went to Reliant with her son.  I was wearing a pair of French black boots that I had purchased while living in Geneva.  I spent more time in the AgVenture than my friends son.  It was heaven!  I was so surprised to see the Astrodome looked so small when I remembered watching Donnie and Marie Osmond sing from the back of a flat-bed truck going in circles around the arena when I was nine years old…  This year was fantastic because we saw Enrigue Iglesius from our nose-bleed seats.  I can’t decide which part was better, the fireworks inside the arena or how loud it was!  My friend’s son and I just yelled at the top of our lungs and laughed because it didn’t make any difference.  We couldn’t hear anything but music!  That was also the year that I read the Annual Book I had purchased for $5 and found that Pam Springer was the only woman on a page of big wigs.  And I said to myself, “I need to meet that woman!  We need to clone her, but whatever she is doing, we need to do more of it.”  And low and behold, in the elevator going down after the show, who is in the elevator with me?  PAM SPRINGER!  I read her badge and commented out loud, “Pam Springer?  I wanted to meet you.  Thank you for being the only woman on that page.  We need more women like you!”  She smiled and thanked me before the elevators opened and we all disappeared going towards the parking lot.  I was thrilled that I got my wish.

This year, as I headed to see my Oncologist I finally notice that it’s a week before my original anniversary of diagnosis otherwise known as my Pinkaversary.  I left the house before remembering to bring my Nacona boots because they need to be shined, but I went straight to see Dr. Yen.  In walks his assistant who I distinctly remember from four years ago, when I got the c word.  She is a tall blonde lady who used to assist another doctor from my doctors second office location.  But what was she doing at this location now?  I asked her, “What is your name?”  She says, “Katy, why?”  I said, “Because four years ago when I had an appointment I showed up in my Rodeo outfit and I think you were there.  And now I am on a Rodeo committee headed to a training meeting tonight.”  She looks at me and realizes what I am saying.  She says, “Oh, my goodness.  You are right.”

The interesting part about my conversation with Dr. Yen was that he started quoting research and reviews from Dr. Ravdin when I said, I know him!  And I go on to tell him that I went to the San Antonio Breast Cancer Symposium and totally understand the latest research findings.  Knowing that I have been off of Tamoxifen since October and then deciding that all the money spent on Dr. Wong’s tea and supplements had definitely helped me thus far but I just knew in my heart that I needed to be on an Aromatase Inhibitor.  Then, he says it.  “Sandy please I just want you to take something, even if it’s once every three days.  Research proves that hormone inhibitors can prolong your overalll disease free survival up to 14 years after diagnosis.”  I know Dr. Yen, and I will, but just not Tamoxifen.  I was able to tolerate Femara for so long until it went generic.  I’ll try that one again, but not the generic because they are NOT the same.  Remember we tried Letrazole, then Anastrazole and they got progressively worse for me.  I could barely sleep at night because my internal organs felt like they were on fire…  I just don’t know how I’m going to pay for it.  Remember when I first purchased it myself?  It was $402.  Dr. Yen says, “Now it’s $250” as he is happy that I am finally agreeing to something and smiling.

I even tell him about George Wong and the herbs I tried and give him information on it.  He sits down as we discuss the Atlas Trial and the Calor Trial smiling at me.  I’m thrilled to be able to finally communicate with him on a different level now that I am becoming more educated which makes me an advocate for my own health!  I am also thrilled when I tell him, “I found an oil that has broken up the scar tissue from my lumpectomy!”  I also invite him to the Aeros Breast Cancer Awareness Game on March 23rd so he can meet some other researchers when he shakes his head that he is already booked that day, when I say, “If you come to my event, then I’ll take Femara every single day!” And we both laugh.

Spending the rest of my day at Methodist hospital working on my practicum project for my Nonprofit education at Rice, I get a call from my mother.  “Dear the prescription is $509, so I got one months prescription for you, unless you want the generic then it would be $100 less.”  Getting home late that night after the Society Launch Party, I gladly took the pill and went to sleep feeling much better about my life.  I’ve got ten more years to go and I’m wearing a pink hat to the Rodeo from now on!

The Other Side of That Shiny Coin

The other side of the story that I started is super shiny!  So please do not feel sorry for me in any way.  Seriously, it has been an incredible journey and I am so proud of my self.  It’s my turn to share what has worked and you may be surprised at how far I will go to try something new…

Yes, last year when I couldn’t stop writing during my fugue state and then slowly waking up to the fact that I just could not tolerate any more medication was a defining time in my life.  All of this started almost a year ago and today I am seeing life like a shiny coin, because I am now looking at from the other side.

Last year the Glass Chapel closed and the Byzantine Frescoes had to go home.  I was devastated.  But on the last day the Chapel was open, I showed up to say a rosary of prayers while staring at the frescoes intent to burn the image into my brain.  It worked.  From then on, every day I would sit facing the sun from inside the house and with my hands in the same mudra as the frescoes depicted, I would continue to pray.

God was answering my prayers.  He had always been answering my prayers, but I just wasn’t saying enough at the time.  Now I was finally feeling more comfortable in my skin and in my new home, with a new schedule.  Writing was my addiction and I just couldn’t stop.  Chapter after chapter it just flowed out of my head.  I even made a spreadsheet of all the characters in my book that seemed more like a teaching journal.  It was my experience changing roads.  Coming to an end and then trying to find a new road hurt.  At the time it seemed so odd to me and just plain strange, but it allowed me to feel every little thing as if it were the first time.  In essence, I was reborn but to the same parents.  But then in Yogic Humanology, it is standard to rebirth in your 44th year on the planet.  And in 2013, I am going to be forty-four.  So, technically, I am ahead of schedule!

Deciding to go back to school was the culmination of a short-list of scholarships that I had decided to apply for when I desperately wanted to attend a conference or meeting but just couldn’t afford it.  I remember the first scholarship I applied for I thought to myself, Sandy you are so blessed. What about the people who don’t have parents like I do?  But I really need some help! I may have the right thing to wear but I can’t afford the ticket.  The information is exactly what I want to hear, and I have the time to attend.  They should send me because I am an excellent candidate.  And with that, I rode an amazing wave of scholarships throughout the rest of 2012.  I went to Santa Barbara to go surfing with First Descents, to Project LEAD (Leadership Education And Development) for a week in La Jolla to become an educated advocate, and even to Indianapolis for the YSC (Young Survival Coalition) Affiliate Summit.  My year was ramping up nicely and when I applied to Rice, I noticed that I had a very hard time focusing on anything.  I noticed when I was trying to read an article and my eyes kept focusing on a single character as my eyes kept moving all around the article and at the words and I was so frustrated that I couldn’t just read like I used to!  Dang it Sandy!  If you are planning to go back to school, you better be able to focus on reading.  And with that, a survivor showed up in my life for me to advocate for, and at the same time, she started advocating for me.

She’d say, “I’m not getting the answers that I want.  What is wrong with everybody!”  I don’t know when the shift happened, but she went to see a doctor that treated her like a super human and helped her over her fear of recurrence.  This is my friend who is stage zero and because of pathology, she found her path led her to receiving a double mastectomy and implants.  She had seen a doctor that had been around to witness the first lumpectomy.  And I wanted to ask him about my cancer.  He was amazing.  I learned so much in the process.  And why couldn’t I get a second opinion even now?  I still have my original Oncologist, but now I had a second opinion.  It was perfect.

“The best thing you could have done was chemo”, he said.  Yep, I know.  But now all the medication is becoming so toxic to me.  Can’t I try something new?  After rattling off the side-effects and referring to my spreadsheet of timing on each medication, he finally said, “You know your body better than anyone.  Since the medications are affecting your cognitive functions and your ability to balance, then I’d continue keeping track of how you feel.” before giving me a big reassuring hug.  I will, I said.  Thank you.

It was officially October of 2012 that I finally quit looking for another option and stopped taking any more medication.  Survivors like me have a five-year window to get back to normal mortality rates and I have one more year to go!  I’ve done everything possible that I was supposed to do for my cancer.  But now, it was time to get back to normal.  That’s when I was awarded a scholarship to attend the San Antonio Breast Cancer Symposium and I was thrilled.  With more than eight-thousand doctors, clinicians, researchers and just 53 other patient advocates like me, where more than 103 countries represented.  Listening to the latest research was mesmerizing.  It was all making sense.  And I could finally focus, and reading was becoming a happy hobby.

It was at the Symposium that I was introduced to Dr. Wong.  He has spent more than thirty years working with breast cancer patients who had also come to find out that all of the medications were so toxic and he prescribed a tea for me to drink twice a day.  I figured that I’d try it along with Young Living supplements, enzymes and oils.  Dr. Wong sat with me and described my adrenals as that of a sixty-year old lady because they just weren’t working very well.  He said, “You’re to young to be like this.”  Nodding in agreement,  I said, “I know!  Help Me.”  I also learned that he had spoken at the Symposium before and cited research on the tea that helped other survivors like me.  And you know what?  After trying it for a month, I was happily amazed at the results.  As my body was getting stronger and healthier, the tea affected me by helping me stay grounded which helped my balance and gave me the ability to focus!  (I want to add photos and links for everyone reading this so you can also understand what I am talking about.)

I know it will take some time, because it’s taken me three-years to get where I am and I don’t expect anything to work over night.  But having the ability to enjoy going to school and focus on reading and writing just makes me happy to be alive.  Did you know that survivors have a higher rate of finding Cancer again because of many things including all the therapies we’ve received to fight Cancer in the first place?  Yes, it’s that crazy.  So I am happy to share my journey as a survivor because there are more and more of us out there.  This is just my story.  I want to share my journey with you.  From adding Maca root powder to my breakfast drink to drinking tea sent to me from NYC twice a day, and taking Hot Hatha Yoga to rebuild my core, it’s happening.  I’m getting stronger every day!