Sunday, December 27, 2009

It's the Most Wonderful Time of the Year

Hopefully, most of you have been reading my short updates on Facebook, but I apologize for the extended period of non-blogging! I've realized I enjoy reading others' blogs so much more than writing my own. But this stagnant blog has brought comments from friends like, "You know, the fire is over!" (a reference to the picture posted here since September), so I will post more regularly. At least I'm getting one more post in before the end of the year!

My health is very good these days - I'm feeling great and have been able to do a lot of holiday activities. Decided not to travel - was considering driving to Ohio and Oregon to see families - and although I miss our families, I know this was the right choice. I've been told that "stress is cumulative", and I've been feeling that way recently. An intermittent eye twitch and small anxiety attacks have been keeping me cognizant of making choices to limit activites (even the "good" stuff). Seems to be working, and I'm taking things slower and staying relaxed.

Recent blood work (I have blood drawn every 3 weeks) shows the tumor markers are still within the "normal" range, and my last PET/CT scan showed continued "near complete remission" from the neck down; however, in October, a brain MRI showed a little growth of the 2 previously-treated lesions, and 2-3 new small growths, all in the cerebellum. We were moving forward to schedule some more radiation, but I'm happy to report that a brain MRI performed last week showed stability in the growths - actually, the neurologist couldn't see the 2-3 new growths that were visible last time. Very, very nice to hear. Now I'll just go in for an MRI in 6 weeks and we'll see what it looks like.

On the subject of radiation, I've been reading a lot about the dangers of CT scans - seems depending on the calibration of the equipment, radiation from a CT scan may equal hundreds of x-rays and increase future cancer risk. My oncologist recommends I have a PET/CT scan every 3 months, but I've pushed it to every 4 months, which means 1 less a year. The latest research includes all sorts of scary findings that different hospitals, even different machines in the same hospital, are exposing people to various levels of radiation - some well beyond what is necessary to perform the scan. Researchers are quantifying the future cancer risks from multiple CT scans, and they're significant. Any traditional treatment choice involves a risk-benefit assessment (chemotherapies have risks for causing secondary cancers, too), but most docs will tell a patient, especially one with active disease, that frequent scans are necessary to catch disease progression before it does any damage. My new plan is to ask radiologists to give me the radiation output numbers for the CT machines. Even if I can't confirm that the machine is properly calibrated, at least I'll let the docs know someone is paying attention.

Unfortunately, I do have a new condition to contend with. Herceptin and Tykerb can both cause a decrease in heart function (the antibodies in the drugs turn off cancer cells, but also turn off cells in the heart). My latest echocardiogram showed heart function down 10-15% from the baseline. Good thing is - this condition is almost always reversible. To remedy the lowered heart function, I'm taking a blood-pressure medicine that should make it easier for the heart to pump. If the blood pressure med doesn't work, I may go off the Tykerb and Herceptin regimen to allow my heart function to return to normal, after which I will get back on the regimen. Luckily, I don't have any symptoms of the decrease in heart function (e.g., shortness of breath or swelling in the feet).

In October, I added another doctor to my arsenal of specialists. He's an MD practicing internal medicine and also "integrative medicine" - the prevention and treatment of disease through the use of diet and supplements as well as traditional medicine - also known as "orthomolecular medicine", I believe. Unlike any of my other doctors, this one doesn't tell me, "There's nothing you can do," and "Eat anything you want." When I hear that stuff I just feel defeated - it affirms my perception of the medical establishment as a cult, or a big pyramid scheme with the drug companies at the top. This new doctor has given me science-backed recommendations for diet and supplements, and I'm happy to have this kind of professional support in my life now.

Come January 1st, I should be covered under a new insurance! I took advantage of my employer's open enrollment, and switched from CA Blue Shield HMO to Anthem Blue Cross PPO. Here in California, Blue Shield and Blue Cross are totally separate companies. The PPO has higher monthly premiums and slightly higher co-pays, but a normal-ish deductible. I made this change to be able to (hopefully) see any doctor I wish, and to increase the chances that recommended treatments will be covered. I spoke with many benefits and insurance representatives and read a lot of materials and was assured that, since there would be no "lapse" in coverage, all my current treatments would be approved and covered. I thought maybe pre-existing conditions exlusions could be invoked here, but I was assured this would not happen. I'm still nervous.

My battle with CA Blue Shield is moving very slowly, as BS drags its heels to respond to the latest requests for "retroactive authorization". I am still very hopeful that the denials will be overturned. By switching insurance, I am hoping to avoid any future denials of treatment. In fact, Tykerb, the drug I am currently paying for out-of-pocket, was recently proven to have synergistic cancer-fighting effects with my other treatment, Herceptin (which insurance is covering). This new research should bolster our request for insurance coverage, since I've been denied previously b/c of the lack of research showing positive results! After the New Year, my onc. will be submitting an authorization request to my new insurance, so keep your fingers crossed!

And finally, Healthcare Reform. Although I am unhappy that the Senate bill does not include a public option (and it looks like inclusion of any public option will mean failure of the bill), I'm encouraged that it still includes provisions to restrict insurers from revoking coverage at a moment's notice and significant limitations on pre-existing conditions exclusions. And while I'm elated that millions of uninsured people will have access to affordable healthcare, I am deeply disheartened that the treatment of the newly-insured will still be determined by insurance companies, who are concerned about shareholder profit and not effective and efficient provision of healthcare.

My deepest gratitude goes out to everyone who has supported us this year. Thank you from the bottom of our hearts! Happy Holidays!

Wednesday, September 2, 2009

Fire! Fire on the Mountain!

We're hunkered down and watching as the largest fire in L.A. County since 1897 rages just a few miles from our house in Altadena. Since last Wednesday (8/26) the fire has been spreading and is now estimated at 140,150 acres (219 sq. mi.) - almost all inside the Angeles National Forest. So far no evacuation orders for our block, but a previous evacuation order was issued for an area just a few streets west of us. Fire fighters are stationed at the north end of the streets that abut the forest, watching the hills and ready to give us the order. There's been little wind and the smoke has been heading away from our home, but there have been a couple days of intense smokiness inside the house.

On Saturday we packed up our 2 cats and headed south for the day. We came back home that night after the smoke cleared out, but have kept our bags packed. Yet another surreal situation this year that I thought I would only see in movies and Internet chain questionnaires: "If you had just a few minutes to gather up your most valuable possessions, what would you take?" It turns out I don't care about photos, jewelry, old letters, etc. What I seem to care about now is all my medical paperwork. Très romantique, right? Since I can't bring filing cabinets, four paper grocery bags stuffed with files are lined up by the front door, ready to go.

One of our neighbors maintains a great community blog, which has been the best source of information about the fire (way better than any "news" outfit):
Although the blog host posts regular updates, the best information is in the comments section, as people write the latest information they've received directly from fire personnel and report which way the fire is moving. The blog is building community and connections here that I think will last beyond this crisis.

Did you know that the lungs are the source of chi in the body? I did not know that. I was informed of this fact by my acupuncturist when I tried to cancel my appointment this week and was told it was imperative that I come in! I'm not coughing or feeling anything in my lungs, but there is ash in the air (and on the lawn and on the car), so I'm staying inside with windows closed (and I went to my appointment).

My health has been good - still some discomfort around the ribs from my surgery in June, but otherwise I'm okay. I'll be going in for blood tests/treatment next week, so we'll see if the tumor markers are still low. And in a couple weeks I'll have a PET scan and that will show any new changes.

A producer from the program "NOW on PBS" contacted me and said they were interested in my story for an upcoming healthcare reform episode. Not sure if anything will come of this, but she said they might come out at the beginning of Sept. for filming. She found my story on the Obama Healthcare Stories website.

Here's a link to the subject song by the Grateful Dead:

Thursday, August 13, 2009

Which Side Are You On?

Jon and I attended our Congressman's (Schiff) healthcare town hall night before last.  I expected a couple hundred people packed into an auditorium, a few cops, a news van or two, and some scary protesters (they'd already burned an effigy in Maryland - what would they do in L.A.?).  

Well we didn't see any burning effigies, but what a wild scene!  The event was moved out onto the street and over a thousand people were already there an hour before it was scheduled to begin.  All the local media and CNN were there, and cameras were all around filming the various battlefront lines.  

It was curious that, instead of creating a line in the sand with opposing forces on opposite sides, advocates and opponents were spread throughout the crowd.  Shouting matches erupted every hundred feet or so, and heated one-on-one conversations were throughout.  We didn't feel much like engaging the folks waving the "Obama is Hitler" signs, or the guy whose "Obamacare" sign had a hammer and sickle for the "c", but god bless the people who did.  And I was heartened to hear some very respectful and meaningful conversations.  

I don't want to discount the real concerns folks have about healthcare reform, but at this event it was my impression that, more than opposing healthcare reform, some folks were there to oppose Obama (perhaps for reasons they'd rather not say), and this was the issue du jour.

When I began considering attending the town hall, I was envisioning a mic in the middle aisle where one could just unload opinions at the Congressman for three minutes.  Turns out they had question cards to fill out, and I added mine to the box almost completely full of others' cards.  There was a part of me that really wanted to speak because I think my story's untouchable - an example of our fatally-flawed healthcare system that everyone can agree on!  I'd been invited to speak at healthcare forums, but declined because I was always in some stage of recovery, plus I was worried I might get emotional, lose my train of thought, etc.  But lately I've been feeling well, and have talked through my fears enough that I thought I could at least read a written statement.

We didn't stay to hear if my question was read, but I did get a chance to speak in an interview with Sonali Kolhatkar, host of the radio program "Uprising".  Here's a link to the segment:  You can click on "listen to this segment" and hear my two cents about six minutes in.  

This was the first time I put myself out there in the public healthcare debate, and I was a little worried about it.  Up until now, I've been putting my story on the internet and watching others respond.  The story receives mostly supportive responses on the web, but a healthcare reform advocate posted it to, and some opponents took the opportunity to say some nasty things!  Like, "Just not worth it.  People are beings and beings die.  This is the cycle of life." and  "Sounds like she is already dead."  Woo-hoo!  Can't wait to jump into that thread and say, Boo!

So all this activism, and the fact that I watched Pete Seeger's 90th birthday jamboree last week, has put me in the mood for a good protest song!  Been singin' 'em all week!  Here's one of my favorites:

"With God On Our Side"
Bob Dylan w/Joan Baez in 1964

Saturday, August 1, 2009

Feeling the Love

I am in awe.  Completely overwhelmed with gratitude and happiness.  Three months ago I thought $100,000 in 100 days? - sure, why not make a pie-in-the-sky fundraising goal.  And now I'm astounded as the end date for the campaign is here... and so is $100,000.  

Because of your donations I have been - and will continue to be - able to afford the treatments my insurance company has denied.  These treatments have greatly reduced the cancer in my body, and I'm feeling very good, physically and emotionally, as I sit here and type.  

Although the funds raised have a direct effect on my health, I think of equal and possibly even greater effect is the outpouring of love and support.  I don't know how to have enough gratitude for all of it.  It has changed my life.  People would find it hard to believe that after a stage IV cancer diagnosis I could be the happiest I've been in my life, but it's true!

On top of the amazing life-affirming and loving notes from family and friends, I've received hundreds of supportive messages and donations from strangers, some from places as far away as Costa Rica, New Zealand, and Switzerland.  I've just been blown away by this response.

I know that all the positive messages, prayers and good energy directed at me have improved my condition, and I am extremely thankful to everyone who has helped me in this way.  Doctors can't quantify the effect of positivity on a patient's prognosis, but they know it helps.  I know it helped me very much, and continues to propel me towards more healing and recovery.

I want to write every expression of gratitude to everyone because "thank you" is just not enough.  So here are some more!  Danke!  Merci!  Much obliged!  Cheers!  Na gode!  Xie xie!  Domo arigato!  Mahalo nui loa!  Well, that was a little more satisfying (for those of you playing, yes, that IS Hausa!).  But what I really want to do is give everyone a big hug and say, "I'm so happy you're here!"  And I'm so happy I'm here!

Muchas Gracias.

Monday, July 6, 2009

One Love

(This week's post is from my dear friend Sarah Jane Shangraw in Boston. Thank you S.J.!)

When Megan and I were in college, U2’s “One” hit the airwaves and no matter how many times I heard it, I never got sick of it. No one did. We all loved that song.

Bono’s lyric at the end, “We get to carry each other” struck me as odd, though. Wishy-washy, in fact. I wondered why he didn’t instead sing “We’ve got to carry each other.” We’re all one, life can be unbearably hard, and we aren’t equipped to get through it alone. So we must -- we’ve got to -- carry each other. Right? I felt adamant.

While that may be true, more recently I came to understand the nuance and wisdom in the actual lyric. We are fortunate indeed for the opportunity to connect in times of trouble. To help carry each other is a privilege because when we reach out, we grow. Lucky for us, we can choose to be of service. We can buoy up others and they in turn will buoy us. Our condition is this: “We get to carry each other.” Right on, Bono.

That was the thinking behind last Saturday’s donation-based “Yoga for Megan” class in Boston: 15 students, 10 minutes of opening meditation, 8 sun salutes, several down dogs and standing poses, 3 OMs, and a good savasana later, we raised nearly $700 for Megan’s Fund.

Having spent my first several months as a yoga teacher giving small private lessons only, I was blown away by the experience of teaching a larger class. I looked around and saw 15 very different triangle poses, and later, 15 very different tree poses. Every body expressed each pose to the degree that made sense. The variation was beautiful. And it only emphasized what between us was the same.

We shared the intention of creating good vibes and support for another person. These yogis’ good intentions shone through their steady effort, their soft and still forward gazes during balance poses, and the fullness and richness of the OMs we chanted “ocean-style,” three rounds to the pace of our own breath so waves of vibrations filled the room.

But the best part was how afterward, to a person, these students expressed thanks for the opportunity to help Megan. It goes without saying I’d do most anything for Megan -- she’s a dear friend and one of the brightest sparks in my life. But most of these students have never even met Megan. They were thankful for the opportunity to be of service to something other than themselves.

In yogic philosophy, this is known as Ishvara pranidhana -- participation with the spirit of offering. In Bono’s parlance, it’s carrying each other. Whatever you call it, it was good. And something to sing about, for sure.

Megan, we hope you felt the love.

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:  
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):

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

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

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

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:

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!