Tag Archives: metastatic cancer

What the Fire at Notre Dame Taught Me

Notre Dame BurnsLike many people, I have an affinity for the renowned Middle Ages cathedral whose roof caught fire two days ago.
I misspent my youth on its steps on the weekends while living in Paris, listening to steel drum bands or drinking coffee at a nearby cafe while shopping for books at Shakespeare & Co which lies in its shadow on the Left Bank.
I visited it later, with my husband, as newlyweds, when the world was filled with hope and wonder and I was carefree. I still marvel at the photos of the statutes ascending the spire I took with a new, telescopic lens I got for Christmas.

Earlier this week, I watched in horror as the roof and spire burned and bit my nails when I read reports during the nine-hour blaze from a Chicken Little Cleric who said the entire structure might burn to the ground.

Meanwhile, 500 firefighters fought the inferno. To them, it wasn’t a fire that occurs once every 850 years. It was a fire they’d trained their whole fire-fighting lives to put out.

As part of their training, they knew there would be massive destruction. And they had a plan. Save the people, save the art, save the altar, save what furniture you can, then focus on the structure, in that order. They knew what can be rebuilt and what can’t.

One brave priest, who evidently was no stranger to church fires, went in to save the artwork, including the coveted crown of thorns Christ wore. Others joined in, forming a human chain to salvage humanity’s creations, which were then deposited at the Louvre a few blocks away.

Now, a few days later, as I digest this story, I have to ask myself, how many times have I heard the interior voice of my own Chicken Little Cleric decrying how this is the end? That there’s no coming back from this kind of destruction?

Meanwhile, undaunted, my own soulful firefighters continue to extinguish whatever blaze rages inside, threatening massive destruction. But unknown to my cleric, they have a plan. They know what can be rebuilt and what can’t. They know what relics to save and which ones to let go.

There’s a story circulating the Internet that oak trees were planted at Versailles 160 years ago in anticipation of a Notre Dame rebuild effort, whether caused by fire or aging or rot. A picture shows, that true or not, those trees line a path into the regal country estate, ready if called upon to be used as supports for a new roof and new spire.

And I think to myself, how much I’ve focused on the rockiness of the path, its uphill nature and the difficulty of the terrain, while ignoring the oaks that line it, ready to offer support for whatever massive destruction has occurred or may occur in the future.

For today at least, I’ve sent my cleric to vespers, asking that voice to pray for a connection to those diligent, dutiful fire fighters within. And in that voice’s absence, I’ll spend time marvelling at those oaks along my path that I seem to have missed, focusing for too long on my footfall.

 

 

 

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Happiness breast cancer

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New Year, New Me

breast cancer conscript

As I approach the anniversary of my three-year median survival rate, I realize I still have a lot I’d like to accomplish.

I’m rather goal oriented. I’ve spent the last week writing out my resolutions, filling in with action plans, reaching out to accountability partners and putting together an overall strategy for success.

My overriding theme is this: How do you accomplish big, hairy, audacious goals while juggling the interruptions of a chronic disease?

I started toying with this idea while battling cellulitis this past fall. I’d been humming along with blog posts and sticking to an editorial calendar when some rogue bacteria slammed me to the ground. All work ground to a halt as I tended to fevers and daily trips to a distant doctor for IV antibiotics.

When I finally overcame the illness I was stuck for a way to get my work life back on track. I know this isn’t unique. One of my mentors lost her job in October and spent the fall and early winter in a frantic search for a new one (which turned out to be a plum assignment at the New York Times).  But for those of us with chronic illness, those life bumps are a constant.

Already I’m resigned that at some point this year my treatment will change. My tumor markers are starting to creep up again even though CT scan results from a few weeks ago show no progression. Still, each CT scan is a game of Russian roulette. The barrel may be empty this time, but one of them has a bullet in it. One of them will be treatment altering and with it a new round of  time-consuming tests, procedures and new side effects to get used to.

On top of the fits and starts of chronic disease, I have the frustration of believing I deserve better outcomes for all the limbs I’ve climbed out on. I deserve success. I knew I was starting to get better this fall when my frustration turned to anger. And anger makes me want to do something different, make a change.

So I compiled a mini-MPA  program- Masters of Philosophical Arts. Thanks to Coursera, a Web site that offers free college courses, I took classes on Resilience, Success, Becoming a Changemaker and Digital Storytelling. They were intriguing and helped me fill in the potholes that keeping me from moving forward on the road to success.

Now I’ve developed a cheat sheet of tools, questions, exercises I can do to refocus my thoughts, chase away the anxiety, regroup and reset. It’s a different approach, one that hopefully leads to different outcomes.

Because this year I do have big, hairy, audacious goals. I plan to finally finish and publish that novel I keep talking about and move on to writing a new one. I plan to launch a podcast, interviewing authors who will be appearing at local bookstores.  I intend to launch a new toy on Amazon. And once I learn how to do that, I intend to launch even more products.

I intend to run a half-marathon with my husband, my sisters and their husbands. And in the summer, there will be triathlons – emphasis on the word “try.”

I intend to become an expert at a few things this year. One is options trading, an adventure that my husband and I have both embarked on learning.  The other is digital marketing.

I intend to be grateful for the things I have, including good health and a stable disease. Statistically, my lifespan is only a matter of months and I have watched sister warriors fight shorter battles and lose.

Most of all, I intend to stay healthy despite what this disease and its side effects may throw at me. Because I still have a lot to do.

 

 

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Compiling My Clinical Trial Playbook

I’m standing under the street light on the corner of Win and Win. I’m sure it casts a shadow behind me, but today I choose to look into the swath of light that shines ahead of me.
I got a call back from Serena who heads one of the clinical trials I’m interested in. Serena was easy-going and fun. It turns she’d transposed numbers from my first call – or I’d gone too fast – which is why she hadn’t responded quickly. She called right back after my second message.
Yes, the trial is open. Yes, I’ll qualify if the drugs I’m on aren’t working.  Yes, because it’s a clinical trial, it’s completely paid for. Yes, it’s as I understood it. They’ll biopsy my tumor, send it to a lab at MD Anderson in Texas to test if for more than 400 mutations (think: doors and windows the cancer cell has on it for the drugs to get into). If the tumor tests positive for any of them, then they have 24 different drugs to throw at it (I wouldn’t be on all 24, just the ones that will “unlock” the door or window they find for my T-cells to get in there and do their job to kill the cancer).
My next step, said Serena, is a CT scan to see what effect the drugs I’m on have had on the tumor. More importantly, it gives the trial folks a starting place where they can measure it and compare it so they know if their drugs are working.
She follows up by emailing me something called an Informed Consent, which I learned at the conference every trial must offer after you speak with them. It tells you in plain English what the trial is about, what’s expected of me, what’s expected of them. It tells me things like they’ll pay for the treatment and in exchange, everything I undergo as part of it, I have to do through their medical team, that I have to let them know right away about side effects so they can respond, that I can jump out of it at any time and that I can always go back to standard treatment (think FDA approved drugs) if I choose and that even though we’ve had this phone call and I have this form, it doesn’t mean we’re moving forward just yet. The consent form is several pages long, but easy to read and understand and I feel much better about the whole thing having it. Somehow it makes me feel like I’m moving forward.
In the meantime, I am putting together a chart in Excel listing all 20 of the trials I am eligible for (I’ve found a half dozen more since the conference). I’m ranking them in the order of most appealing to least. It’s time consuming because the description of each trial is mind-boggling. I have to look up each drug they’re testing to see what it does, what it targets (is it my immune system or the cancer cell? What will it do to it? What side effects might I have because of it?)
Gratefully the National Cancer Institute has an online dictionary that I can plug each drug name or number into. It takes a bit of fiddling, but I don’t give up until I understand it. Then I write a sentence synopsis in my chart about the drug and what it will do. In another column I list where the trial is being held, in another column who is sponsoring it (is it a drug company? A research company? A hospital?). I don’t know if this is important, but it might be a factor worth weighing in on later, so I add it. I have a column for next steps (like the scan or another biopsy or a blood draw or a mouth swab). It’s amazing the different ways they can retrieve cancer cells from the body. I have a column for the type of study – whether it’s a Phase 1, 2 or 3 or just a research trial. Phase 1 trials are searching for tolerable doses of the drug. Phase 2 looks to see how effective the drug is. Phase 3 hones it down even further. Many drugs today are so effective that they’re receiving FDA approval during Phase 2.  Still, as a patient, it’s important to know what I’m signing on for. Phase 1 studies are bigger and will take in more patients, but as they’re looking for tolerable dosages, there’s a good likelihood there will be side effects. That’s usually the trigger point when researchers say “OK, enough. We’ve found the right dosage.” This is a conversation we’ll elaborate on once I’ve been accepted into the study, so I’m only concerned about it now as a way to narrow my choice on the best trial for me.

I’m looking at this chart as my new playbook. Here’s where we’re going if the drugs I’m on aren’t working or once they stop working (and they’re virtually guaranteed at some point to stop working). This feels empowering to me, like I’ve thrown in the Hail Mary pass for a running game.

I’ll see my doctor again in two weeks, where I’ll hand him our new playbook. The way I see it now, he’ll either tell me my numbers are dropping which means the drugs I’m on are starting to work and I can coast for a while, get back to my life. Get back to managing cancer rather than it managing me. That’s a win.

Or he’ll tell my my numbers are still rising, which means the cancer cells are changing quickly to adapt so the drug doesn’t kill them. Fast-changing cells are perfect targets for clinical trials and the drugs they’re testing. So it will be another win.

Which is how I’ve come to be standing under the street light on the corner of Win and Win, changing my outlook so I’m no longer focusing on the shadows being cast behind me, but the brightness that’s in front of me. For now, it’s a great place to be.

 

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