Sunday, June 28, 2009

Slow Recovery and Music


I've been home from the hospital for over a week, but I still feel unwell.  I wanted to snap back quickly, and I have good days, but I've had some bad days of feeling feverish, achy, and generally under the weather.  I guess this is a slow recovery, and I just need to surrender to the process; however I can't help increasing my efforts to speed up things a bit, like going to acupuncture twice a week instead of the usual once, doubling my chinese herbal supplements (following the advice of the herbalist), and drinking raw juices and making my diet almost exclusively veggie/fruits.  Can't hurt - at least I hope not.  

I posted my story to Obama's Healthcare Stories website and received some Facebook traffic as a result.  One person wrote that she read my story in an email from Joe Biden.  Also heard from people in Costa Rica, Switzerland, and Winnipeg.  I had no idea how far the story would travel when I posted it, so this is a great surprise!  Just tried to go to the link and it says the page doesn't exist anymore - maybe they regularly delete to allow new ones?  Who knows.  Hopefully, it was not pulled because of the hundreds of times I clicked the megaphone icon that said "People should hear this."  Mine was the first story that popped up on the website for a while.  Here's the link that used to work: http://stories.barackobama.com/healthcare/stories/187392  
At least you can read others' stories.

When I was in the hospital and couldn't sleep, I watched a lot of late night talk shows and saw some great music acts.  I especially liked Phoenix's performance of "1901" on Letterman.  And here 'tis for your listening pleasure (the something different about them is Frenchness):

http://lateshow.cbs.com/latenight/lateshow/live/index/php/990536.phtml?play=1

P.S. The Megan's Fund campaign comes to an end on Aug. 1st, and we are at $80,000 (including offline donations) towards the $100,000 goal.  I am overwhelmed and humbled by this response.  My deepest gratitude to everyone for your support - financial, emotional, and spiritual.  My heart is full.

Friday, June 19, 2009

Waiting for Release

Thanks for all the well wishes for my surgery!  I felt all the good vibes and tapped into them in the darkest moments.

I'm here at USC University Hospital waiting for paperwork to be completed so I can get the heck out of here.  My anticipated "quick" recovery was not so quick, and what was scheduled to be a four day stay turned into nine days.  A week ago, I was lying here with a chest tube, catheter, oxygen, and all sorts of other tubes hooked to things electric.  Now I am free of all "leashes" and just waiting for my release.  

My procedure was performed by a cardio-thoracic surgeon, and involved cutting a "window" in the pericardium (covering around the heart) to drain a large amount of fluid that had collected.  Pathology report's still not in, so we don't know if the fluid around the heart was highly malignant and caused by the cancer, or if maybe the fluid was the result of my five rounds of aggressive chemo.  Guess I'll find out that info the next couple weeks.  

I was also walking around with a significant pleural effusion (fluid around the lung), but the condition was asymptomatic, as I had no shortness of breath or coughing.  Now all that fluid has been drained, as well.  Besides cutting a window in the pericardium, the surgeon also applied powder to the area to act as an irritant, which will help the heart and lungs stick to their coverings and prevent more fluid from collecting.

The surgeon used a robot to do the procedure and made a movie of it.  When I spoke to my oncologist this week, she said she's "seen me in the movies", as the surgeon had already shown the movie at the "Tumor Board" - oh, the organizations I did not know existed.  

This turned out to be a pretty technical post, which is much easier to write about than the emotional roller coaster I created/endured over the last week.  Probably should've asked my psycho-oncologist for some anxiety meds.  Oh well, live and learn - I hope to do a lot of both.

Tuesday, June 2, 2009

Welcome to the Megan's Circle Blog!

Hi Everyone!

I just watched the first Tonight Show with Conan O'Brien and I loved the opening: Conan running cross-country from NYC to LA, sort of bringing the whole country with him. Made me think what I've thought before: Everybody ends up in LA, it's just a matter of when!

I'm happy to be able to make this first blog entry filled with good news! My latest test results have come back showing I've had a remarkable response to treatment, and I am pretty healthy right now. Since January, I've been receiving aggressive chemotherapy after I was diagnosed with stage IV breast cancer. It's been a tough five months, but I'm finally experiencing some relief.

To provide a little background:

I spent several months last year visiting doctors for symptoms that eluded diagnosis and eventually forced me to leave work without pay. A trip to the emergency room in January finally yielded concrete information: I was diagnosed with an aggressive form of breast cancer that had already spread to my liver, brain, and bone.

Treatments including chemotherapy and targeted therapy began immediately to shrink the tumors throughout my body. Everywhere, that is, except for those in my brain. When my doctors prescribed additional, cutting-edge treatments that could eliminate the brain tumors and prevent new growth, my insurance company, California Blue Shield, denied coverage.

Since I want to live as good a quality of life as possible for as long as possible, I decided to get the treatments on my brain tumors by paying out of pocket.

As you can imagine, given the rising costs for even the simplest healthcare, it's nearly impossible for an out-of-work person to afford state-of-the-art cancer treatment without the help of others. To help me pay for these current costs, my family and friends launched Megan's Fund, with a goal to raise $100,000 by August 1st. To date, $60,000 has been donated by my family, friends, co-workers, and supporters, and it's only been a little over a month since the campaign started!

If you would like to contribute to Megan's Fund online, please visit
http://megansfund.chipin.com/megansfund

Or mail your donation to:
Megan Jones
PO Box 593
Altadena, CA 91003

YOGA FOR MEGAN
Here's another way to help. If you are in Boston, my college rommate and dear friend, Sarah Jane Shangraw, is offering yoga classes for a minimum of $20 per person per class. Sarah Jane's husband, Jon, is going to match all the "Yoga for Megan" donations! If you're interested, email me at megancathleen@hotmail.com

BENEFIT SHOWS:
My friend James and his band The Apple Bros. and special guests are organizing benefit shows to raise funds. Details on upcoming benefit shows can be found at: http://www.myspace.com/applebros

FACEBOOK:
If you're on Facebook, join the group Megan's Circle to keep up on the latest news.

Thank you from the bottom of my heart for all of your support! Check back here regularly for more blog entries!