Making a Comeback

I don’t want to minimize the plight of the last few months. It’s been rather daunting. Cancer suddenly raging out of control. Anemia. Lung problems. An inability to walk anything but a short distance. And then my oncologist suggesting I consider hospice or at the very least going off treatment. The human brain is not made for such madness.

It started at the end of May when I went in for a chemo treatment, tired and lethargic, unable to walk to my doctor’s office and in need of a wheelchair. When my doctor finally came in to the exam room, she was aflurry. My platlets were too low for chemo. I needed to go to the hospital for a blood transfusion. I’d be parked there for a while as my new medical team assembled. My oncologist would order my chemo. The others? They’d offer comfort, support and hope. They’d tell me tales of success. They would cheer me on and fight with each other on the best way to nurse me back to health.

There were several hospital stays, many transfusions and a lot of guessing about what was going on with me. Moreso, there were divergent opinions about how to best proceed. By the end of June, my oncologist was suggesting I consider life without treatment – that I give up. I wasn’t ready for that.

My mother and I drove home from Memorial Sloan Kettering in a stoney silence that day. I had been so healthy and now this. My dream for a better future was now over. The music stopped and I was without a chair.

For the next few days I knew only a simmering anger. I watched as people with no regard for their bodies lumbered in and out of the hospital while I sat in a wheelchair awaiting a transfusion. I could taste the bile welling up as I thought about all the exercise and healthy eating I’d done that hadn’t offered me any respite. The game was rigged against me. I just had to suck it up.

It seemed to go on like that for weeks, although looking back, it was probably more like days. It doesn’t really matter now. What matters is that it happened. My platlets, the glue that holds the blood together, started to shoot up on their own.

Then came the hemoglobin. It had settled in to the 7 range (11 or more is normal). High 7’s aren’t transfusion eligible while low 7’s are. Suddenly I found myself in the mid-7-range. And then the high 7’s. Then the 8’s.

Here I am in mid-August. My blood infection has healed. My platlets, which once threatened a bleedout, are now back to normal. My hemoglobin is returning to normal. My lungs are healing. I have a new swelling in my right leg, a form of endema. We’ll see where that goes. For now though, my body returns to normal.

I admit, I had my days over the last few months. Some of them were dark. Others were boring. Waiting for death is not fun.

I had a lot of company. When your friends think you’re dying, they come out of the woodwork to see you one last time. Do you think they’ll be disappointed to hear it was a false alarm?

A full recovery is in my future. Even if it’s not “full,” recovery is still part of the here and now. I’ll take it.

I’ve gone from more doctors than I could count to just one and even she’s giving me breathing room while we see how effective this 5FU chemo treatment is. I can’t explain all of the things that went into my success. I can say that staying active, even if it was just walking around the hospital concourse, certainly had its payoffs.

Now in the mornings I get up early with my husband and we go for walks in the park. I can do about 1,000 steps at a time before I need to rest. That’s today’s number. Next week, who knows?

I work out with loop bands and a spirometer. I eat fruit and vegetables from my garden. I consider getting a hair cut. Yesterday, I got a chin and eyebrow wax. The things you choose to do when you figure you’re going to live a while longer.

Maybe this is a lucky reprieve. Maybe I’ve made a few good choices in my life that are coming to roost. Maybe I just needed to relax and let life take its course. There are many answers I don’t have, that I may never have. But I’ll take this hiatus gratefully. Today is one day that I’m glad to be alive.

Keeping One Foot in Front of the Other

Photo by Frank Busch on Unsplash

How long does it take to walk out a blood clot? That’s the puzzle life has handed me.

It took two miles to find it. The first mile an easy walk, like the days or hours before I was diagnosed with cancer, when life could be bad, but not that bad.

The second mile a struggle, searching for places to rest, my heart beating faster than it should but not pounding. My breath labored, but not out-of-breath.

I emailed my surgeon about my newfound difficulties. I’d had a biospy a few days before as part of a #PrecisionMedicine clinical trial I am in. Every time a drug fails, my doctors take a closer look at my cancer cell to see how it’s changing to see if there are new treatment options for me. The biospy was suppose to be a calkwalk. The day after the surgery I was traipsing through museums in New York City, where I’d had the surgery.

My surgeon’s nurse called back to say my fatigue was just part of the recovery process that could take a month or more to resolve. No, what I was feeling was not part of the recovery process.

I emailed my surgeon again, this time with numbers – the distance I’m used to walking, the ground I can now barely cover, my heart rate now, my heart rate as I know it for just walking. Numbers got his attention.

“Go to the urgent care,” his nurse said when she called back.

After hours of being poked and prodded, tested and scanned they found a blood clot in my lungs. I am now on blood thinners and have added a hematologist to my retinue of doctors. The blood thinners will stop new clots from forming, but they won’t dissolve this one. For that, I walk. Sometimes I struggle just to make it around the block. Other times I can walk a mile or more without distress. Recovery is never in a straight line.

And the cancer? It grows. It changes. And it remains uncertain and unpredictable. I wait on further test results. Maybe there’s another pill I can take. Maybe a promising clinical trial. If all fails, there’s hardcore, hair-losing chemo awaiting me which I’ll be on until it stops working. And then the process begins again: biopsy, pathology, promising clinical trial or chemo. This is life at year seven with metastatic breast cancer, the brass ring one gets for having outlived the three-year median survival rate. Further down the drug rabbit hole into the realm of surviving on chemo if new treatments aren’t discovered and approved.

I don’t yet know how many miles I need to walk to dissolve a blood clot. But I imagine the prescription is the same as living a life with the uncertainty cancer: Keep putting one foot in front of the other for as long as I can. And then, rest.

What I learned about myself in a blog hop challenge

Fellow blogger Nancy Stordahl has challenged me to blog hop. As you’ll read, I’ve never done one of these before. I have to admit, I was rather surprised at what I discovered about myself.  See if you agree.

Who are you?
I wonder about this a lot, post cancer. I once was certain about who I was, but now I’m not sure at all. I’d love to be an Audrey Hepburn character living in Paris, driving a red Mini Cooper around the Arc de Triomphe and living in an apartment with ornate pickled-wood paneling and doorlike French windows that overlook some busy Parisian street, hanging out with artists and art gallery owners and spending brooding afternoons along the Seine drinking rich, velvety coffee at an outdoor café. Hepburn died of a rare cancer at the age of 63, only a bit older than I am now. She was deeply compassionate and left a brilliant legacy based on the work she did with UNICEF, bringing the plight of those living in poverty and victims of political upheaval and starvation to the world’s attention.
It’s unlikely at my age that dream will come true (although her legacy gives me food for thought). Now I think I’d rather be the Red Queen in Alice in Wonderland, running around yelling “Off with their heads!” and “Here it takes all the running you can just to stay in place. If you want to get somewhere else, you must run twice as fast.”
“Where do you come from? And where are you going?” the Red Queen asks Alice, who admits she’s lost her way.
I fear I am more like Alice and less like the Red Queen, despite my aspirations.

Share anything you want about your cancer (type, stage, when diagnosed, whatever.) Share something about yourself such as where you live, the name of your blog and it’s “mission”, a challenge you have faced or are facing now, or whatever you want.
I have metastatic breast cancer, which is a chronic disease until it’s not chronic; then it becomes terminal. I was first diagnosed in 2011, then had a recurrence in 2015. My blog is called Breast Cancer Conscript because I feel I’ve been drafted into a war I have no appetite for and yet now am in a battle for my life. As you can tell, I don’t have an issue with the battle metaphor when it comes to characterizing my plight with the disease. It’s the closest I can relate to a military veteran who has experienced a life beyond the ordinary. Navy Seal (and disgraced Missouri governor) Eric Grietens, author of Resilience, puts it best when he writes:
“The frontline was where battles were fought and fates decided. The frontline was a place of fear, struggle and suffering. It was also a place where victories were won, where friendships of a lifetime were forged in hardship. It was a place where we lived with a sense of purpose.
But frontline isn’t just a military term. You have frontline in your life now. In fact everyone has a place where they encounter fear, where they struggle, suffer and face hardship. We all have battles to fight. If you want to win any meaningful kind of victory, you’ll have to fight for it.”
My blog focuses on that fight, including just getting through a day, getting through other life-bombarding tragedies, helping to shape public policy so that it leads healthier outcomes for all of us and hopefully one day for a cure, bringing to light promising research, advice for overcoming some of the issues cancer patients face – from how to make a living while also tending the disease to how to deal with mind-boggling health insurance issues.

Have you ever participated in a blog hop before?
I’ve participated in a sock hop, a bunny hop but never a blog hop before.

What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?
I like to read stories and tell stories and find new ways to do that, whether it’s through pictures, sounds or lame videos I’ve made or any other novel approaches to storytelling. I’m always experimenting and looking to others who experiment.

Describe yourself in three words. Yes, just three!
Stirred the pot.

Name three of your favorite books from your youth (whatever age that means to you.) that had an impact on you.
Breakfast of Champions by Kurt Vonnegut
Steppenwolf by Herman Hesse
The Man Who Folded Himself by David Gerrold

What’s your favorite dessert of all time?
Anything dark-chocolate based that includes a cappuccino along the left bank of the Seine under a starry sky at midnight.

Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)
I had an Australian shepherd-German short-haired pointer mixed pound puppy named Nietzsche when I was a single, young woman. He used to eat my boyfriend’s underwear and loved to run alongside me when I biked along the river, his tongue hanging out like a ladle. He had a very independent nature (my mother called him “willful”). One night he ran off, not returning until mid-morning, despite my all-night, desperate search for him. His face was swollen from bee stings. I just took him to the vet, letting the secret of the night’s excursion reside with him alone.

What’s something people don’t know about you and might be surprised to learn?
I’m the sewer commissioner in my hometown. My motto: The shit runs through me.

Do you believe healthcare is a privilege or a right?
Right, hands down. And I work hard to secure that right for EVERYONE.

What’s your favorite thing about blogging and/or reading blogs?
I like the connection and the community, but most of all, I love the changes blogging can bring about, from increased research funding to public policy initiatives. Every piece a blogger writes is one step closer to a cure for cancer.

What’s something you really suck at?
What’s something I don’t suck at? is a better question.

What’s something you’re pretty good at?
I’m really good at sucking.

How do you escape from cancer (or life in general) worries?
Ah, if such a thing were actually possible. Cancer is like a shadow, so it’s nearly impossible to escape. I call it “the enemy within” and my goal is to make peace with it until I can annihilate it completely (and I do hold out hope for that day) which helps to relieve any worry I feel about it. Running and staying physically active keeps me sane. Humor keeps me from driving off a cliff.

Here’s what others in the challenge have to say:

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Help wanted: asking for a friend

Long ago (well, maybe 15 years ago) and far away (ok, eight blocks down the street) a single mother was raising four teen-aged children bordering on adulthood, earning her living as a house cleaner when she was diagnosed with breast cancer.
She didn’t have health insurance, so whatever symptoms she had she ignored until she couldn’t ignore it any longer. When she was diagnosed, her doctors offered little hope.
She did her best to continue working until the disease got too much. Her children took care of her until the end. When she died, her children settled her affairs and dispersed. Some got married. A daughter got a job as a bartender and moved into her own apartment. One son had a grandchild she never had the chance to meet. And then another.
At the time, there was no Obamacare, so even if she had made enough money, she couldn’t buy health insurance. In truth, even under the Affordable Care Act, she couldn’t afford it, which meant any care she received was likely funded through charity care at the hospital. And that meant, her doctors didn’t discuss cutting-edge treatment to prolong her life because they wouldn’t be compensated.
And that meant, she had no hope, leading to a grueling and premature death.
Right now there’s a bill before Congress called the Metastatic Breast Cancer Access to Care Act (H.R. 2178). It’s the second time it’s been introduced, sponsored this time by Republican Peter King (NY-2) and Democrat Kathy Castor (Fl-14). A companion bill has also been introduced in the Senate by senators Martha McSally (R-AZ) and Chris Murphy (D-CT) as S. 1374. If passed, it would waive the five-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare coverage.
With a median survival rate of three years, most metastatic breast cancer patients won’t live long enough to receive Medicare under the current regs. That means they die in debt which they leave to their grieving family members or for the taxpayers at large to pay through charity care reimbursements hospitals receive from the government.
A study last year by the American Society of Clinical Oncologists found that 25% of cancer patients also suffer from financial toxicity, meaning they don’t have the money to pay for medical care or household expenses due to their disease. The result: they forego medication, tests and doctors appointments, leading to painful and tormenting premature deaths like the one I’ve described (which is a true story).
“The current safety net system is more tailored to the needs of individuals with chronic and long-term illness that undermines their ability to work, and does not meet the needs of individuals facing catastrophic events and complex ongoing care,” said Michael Kovarik at METAvivor, a cancer advocacy group.
METAvivor is asking people to write to their legislators, asking them to co-sponsor the bills to raise the ante this time that the legislation will pass. So far, it has 101 sponsors in the House, including Republican Brian Fitzpatrick (Pa. -1) in Bucks County. You can bet, I’ll be writing to my congressman, Tom Malinowski, to ask for his support.
In the Senate, it has seven sponsors and none of them are from New Jersey, where I live. You can guess what I’ll be doing as soon as I finish writing this post.
I encourage anyone in the United States reading this to go to http://www.congress.gov and type the bill numbers (H.R. 2178 and S 1374) into the search bar. Click on the bill, then scroll over to the tab that reads “co-sponsor” and click there to find out if your legislator is a co-sponsor. If you don’t have your rep’s contact info, you can go to http://www.house.gov or http://www.senate.gov, type in your zip code and their information will pop up.
METAvivor has made it easy for us by providing this script:
 I write today as a constituent and as an advocate for the metastatic cancer community to ask that your office please cosponsor the bipartisan Metastatic Breast Cancer Access to Care Act (H.R. 2178 f or S 1372). This common sense legislation would fast track disability and healthcare benefits (the current waiting periods are a major challenge for many affected individuals and families). 

If you’re writing to your congressman or woman, add: To cosponsor H.R. 2178, please reach out to Deena Tauster in Cong. Peter King’s office at deena.tauster@mail.house.gov or 5-7896 or Elizabeth Brown in Cong. Kathy Castor’s office at elizabeth.brown@mail.house.gov or 5-3376 

If writing to your senator, add: To cosponsor S. 1374, please reach out to Emily Crow in Sen. Martha McSally’s office at Emily_Crow@mcsally.senate.gov or 4-2235 or Elizabeth Darnell in Sen. Chris Murphy’s office at Elizabeth_Darnall@murphy.senate.gov or 4-4041.

While I’d add that this law should cover anyone diagnosed with metastatic cancer, this is the first step.  Those of us living with this disease thank you for your support.  If you’re waffling at all about taking action, I remind you of this poem written in 1946 by German Lutheran pastor Martin Niemoller:
First they came for the socialists, and I did not speak out—
Because I was not a socialist.

Then they came for the trade unionists, and I did not speak out—
Because I was not a trade unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

 

What the Fire at Notre Dame Taught Me

Like 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.

 

 

 

Cancer is Dance. Here are the steps

Cancer in abeyance, a cold and broken hallelujah

“I’ve heard there was a secret chord, that David played and it pleased the Lord. But you don’t really care for music do you?”

Last week I got the news every cancer patient wants to hear: Scans show No Evidence of Disease. My cancer is in abeyance.

“It goes like this, the forth, the fifth, the minor fall and the major lift. The baffled king composing Hallelujah.”

Do I feel a sense of relief? Do I want to scream Hallelujah? Absolutely.

“Your faith was strong but you needed proof. You saw her bathing on the roof, her beauty and the moonlight overthrew you.”

Do I want to believe there was something I did right to make this happen? Yes, again. But I also know better.

“She tied you to a kitchen chair, she broke your throne and cut your hair, and from your lips she drew the hallelujah.”

Yes, cancer has been that evil mistress who has thrown me to the ground, made me say uncle, then laughed at me mockingly as I struggled to get back up. Cut my hair? Hell, she sheared it right down to the scalp. And when chemo was done and it started to grow back, yes, she drew from my lips a hallelujah.

“Baby, I have been here before. I know this room. I’ve walked this floor. I used to live alone before I knew you.”

Even with cancer in abeyance, I no longer live alone. She lurks like a shadow within me, rogue cells slithering undetected in my blood, my bones, my organs. As I get back to my life, I struggle with this acceptance. That it’s not over. That it will never be really over. Not until there’s a cure.

“I’ve seen your flag on the marble arch. [Cancer] is not a victory march. It’s a cold and it’s a broken hallelujah.”

It will return. I try to put that out of my head. I try to celebrate this moment, this win. I celebrate with a broken hallelujah.

“There was a time you let me know what’s real and going on below. But now you never show it to me do you? And I remember when I moved in you. The holy dark was moving to and every breath we drew was hallelujah”

A time when I could trust my body, the idea that if I was feeling healthy, I was healthy. That if everything seemed OK, it was.

“Maybe there’s a God above and all I ever learned from love was how to shoot at someone who outdrew you.”

There was a time when everything was clear cut. When I aimed at a target and hit a bullseye, I was done. I’d made my mark and could move on.

“It’s not a cry you can hear at night. It’s not somebody who’s seen the light. It’s a cold and broken hallelujah”

I can not explain what it’s like to live a life turned-upside down, to fight to bask in the light of good news in this moment, despite the darkness that certainly lies ahead. Yes, it’s a cold and broken hallelujah.

All the same, it is hallelujah, hallelujah, hallelujah.

 – Quotes are lyrics to”Hallelujah” by Leonard Cohen.