The Power of Connection

"We don't accomplish anything in this world alone... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads form one to another that creates something." Sandra Day O'Connor.

 

Recently, I received an email from Grace Goldstein, the Chief Operating Officer of the Carcinoid Cancer Foundation, letting me know that CCF had featured my blog on their Facebook page. I was honored and touched by her faith in my words.

...from CCF's Facebook Page

Sometimes I forget that I have a rare disease. And sometimes, I think I'm cured. And then I get test results and realize - nope... I'm still a medical mystery.  CCF is an amazing place where carcinoid patients can connect and educate themselves about this rare cancer.

I would like to share a recent message I got from a fellow zebra, Christina, because sometimes I forget that I write for more than just myself. I get lazy and down because I think - who's really listening anyway...right?  I mean... I'm just writing words so they can aimlessly float around in a starless cyberspace... so who cares if I go for a Red Mango Fro-Yo instead of blogging? (Red Mango is delicious by the way, but I digress.)

But Christina and Grace, and all my fellow carcinoid friends, help remind me that one of the purposes of my blog is to connect --which not only might help others facing the same baffling carcinoid questions that I do, but also help ME continue on with this quest, which sometimes seems like a never-ending riddle that gets even more complex with each lab print out and doctor's furrowed brow. 

Below is part of an inspiring email I received from a fellow zebra Christina (visit her site at Caring Bridge)

Hi Beautiful Marlena! 

My name is Christina and I am a huge fan of yours.. not only have you lifted my spirits, helped me to feel less alone (less alone regarding the whole Carcinoid nightmare), your whimsical and soulful writing has also opened my heart and helped me heal.. thank you dear one.

I was finally diagnosed with Carcinoid Syndrome January this year (having been misdiagnosed for over 5 years ) By February I was in Carcinoid Crisis and by Feb 21 my surgeries ( liver 70% taken out. Over a foot of small intestines taken out and several organs removed for good measure). Since then I have been in ridiculous pain 24 / 7. Have had bile leak, followed by a mean bout of painful gut retching pancreatitis, stints put in and several other issues that have come up since.
 

Needless to say I feel lost, tired and scared…..
 

To say it has been a Hell ride would be an understatement.. it has been – by far – the worst experience of my life.. yet there have been some miracles along the way .. Back to YOU. Thank you for your brave willingness to share your thoughts, efforts, feelings, hopes, … your LIFE! You are such an inspirational Lady and this makes reading your posts that much more interesting and uplifting!

...

So, dear lady, I wish you and your loved ones AND CCF all the love and healing in the world. Hopefully our paths will cross. And may you have great health and many years of adventure and bliss and love!

Warmly and with Aloha
Christina

Breath in the Funk

My Bikram yoga instructor began Friday's evening class with a stern warning,"If your fingers start to go numb, it's very important to tell me right away so I can give you an electrolyte pack, otherwise your face will go numb and you won't be able to ask for one."

He was not joking.

It was sort of like hearing a perky flight attendant go through the oxygen mask "safety demonstration" right before taking off in a flying oblong box... unnerving.

Woody Allen said, "80% of success is showing up." Obviously, Woody Allen has never taken a hot yoga class before.

Bikram (aka hot yoga) is one of the hardest things I've ever survived - and as a "beginner"... surviving is the best you can hope for. Bikram definitely requires more than just showing up; it requires unwavering willpower and fearless focus in order to complete the 26 grueling postures in a studio that's ideally set at 105*F with 40% humidity.

You start sweating about 4 min into a Bikram class. And when I say sweat, I mean water gushing out of every pour in your body - so much sweat that you can't even grip your ankles because your hands slide right off.

There is an undeniable funk about hot yoga rooms, despite odor eating machines and regularly shampooed carpets. I guess that's part of it. You got to breath in everything in life - even the unpleasant - in order to push yourself towards improvement.

Our instructor was incredibly motivational. When students started dropping (and some always do), he would stand next to their mats and assure them "I'm with you." In addition to periodic reminders about finger numbness, he constantly reminded us to breath into poses. People tend to hold their breath when they are in pain; and "relaxing" into pain and nausea isn't an easy task. It's nearly impossible.

But that's the entire point. Bikram teaches you how to deal with your body when it's "uncomfortable" - which is exactly what people desperately try to avoid feeling on a daily basis.  It's about making thousands of tiny adjustments in order to just get from breath to breath - squeezing, pulling and bending your body into perfect form under imperfect conditions.

You may be thinking: if it's that hard, why do people do it? Because after finishing a class, you feel completely cleansed - spiritually and physically. Bikram gives you clarity, which is worth the suffering.

So tomorrow I'll go back to the studio - to breath in the funk and exhale everything not essential for surviving the moment.

My yoga class… is one long, hot meditation. We put incredible pressure on you to teach you to break your attachment to external things and go within. Instead of blaming others for your own weakness, fear and depression, you will learn to take responsibility for your own life.

You’ve got to face yourself in the mirror, every part you don’t like, every mistake you make, every excuse your mind creates to limit your potential liberation – there’s nowhere to run, nowhere to hide. No escape from reality…

After you learn to discipline your body and mind under these conditions, you will truly be able to concentrate; no external will be able to break your powerful focus.

That’s why I say that the darkest place in the world is under the brightest lamp. In the Torture Chamber of my class, you will find a beautiful light, and the source of that light is within you.

~Bikram Choudhury

Carcinoid Cancer Diagnosis Anniversary

April 27th was the 4-year anniversary of my Carcinoid Cancer diagnosis. If cancer can be described as a roller coaster ride, then these past couple years have had some crazy loop-to-loops, upside down turns, and gut-wrenching drops. There really isn't a lot that is stable anymore; it's just learning to breath during the times when the roller coaster slows down or is climbing.

This past summer I lost over 20 lbs in 6 weeks - and was down to 104 lbs (I'm 5'5). I couldn't walk; I was having palsy episodes; I was in excruciating pain all the time... my two best friends, Rob and Mike, took me into their home, and instead of enjoying their summer - they applied cold packs, created complicated pain medicine schedules, carried me to the car for ER trips, picked up my prescriptions in the middle of the night, and took turns staying by my side 24-hrs a day.

None of my doctors could explain why my body was shutting down.. the blood tests were almost indecipherable - anemia with high iron, blood counts and sizes in direct conflict with each other... my doctors ruled out all the immunity issues: Lupus, HIV, etc - finally, elevated 5-HIAA "increased their reasonable suspicion" that it was probably the cancer or after-effects of the cancer. Just as inexplicably as it came on, the process started reversing itself in November.

That's the thing about the neuroendocrine system - it affects EVERYTHING... and even when the doctors tell you it's not the cancer; if there really is no other explanation then you got to trust your gut. I'm back up to 118 lbs and eating again. My palsy is at a minimum and the pain is managed well without narcotics. So I'm in that breathing space right now... but weird symptoms and pain remind me that I'm still strapped into that roller coaster seat... locked in.

I'm grateful for all of the love, strength, prayers, and support that my friends, family, colleagues and the Carcinoid community have given me. I know this - even if I'm stuck on this roller coaster for a while longer, I've got amazing people in my life who have opted to take that ride with me, and others who are on the ground - waiving... cheering me on.

Today's Grammar Lesson

Today was the first day back from Spring Break. I started classes by innocently asking them to "spell the word grammar"; more than 1/2 of my students spelled it grammEr. I shook my head and told them to get warmed up for "grammar bootcamp" this week.

For fans of the great book "Eats, Shoots and Leaves" - here are a couple of Monday giggles for you. Enjoy.

We started out discussing the importance of commas using the above lesson; and interestingly nearly 100% of my high school students punctuated it like the "college males"

We then moved onto this funny, yet accurate example of word misuse...

And finished with attempted ardvark murder charges...