Tag Archives: stage IV cancer

Cancer in abeyance, a cold and broken hallelujah

breast cancer cure

“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.

 

 

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Personalize Medicine: A Personal Story

breast cancer

Maybe you’ve heard of it: Personalized medicine. Or sometimes it’s called precision medicine. The idea is that through a series of tests, researchers decode a cancer patient’s DNA plus the DNA of the tumor to see what’s gone wrong. Then they find drugs to “fix” or bypass the problem in hopes of creating a cure.

For some cancers, this has gone splendidly well. For certain types of blood cancers and even rare cancers, it’s been a game-changer.

Breast cancer, though, is still in precision medicine infancy. And for me, who only has cancer in small spots on my bones, it’s been a fight to even get a seat at the table. Part of the problem has been that biopsies of bone tumors are unreliable. That’s because the tumor mixes in nicely with the bone, so that when a sample is taken, you need to separate the two, usually by dunking the sample in acid to disintegrate the bone. You don’t need to be a rocket scientist (or even a cancer researcher) to figure out that that’s going to be a problem that could alter the tumor cells.

My first biopsy to take advantage of this new research was two years ago. The sample wasn’t good enough – there weren’t any cancer cells in it. By the time I got the results, I was on a treatment that was working so my oncologist recommended waiting until it failed (plus, I imagine the health insurance company weighed in, refusing to pay for two biopsies so close together).

This past summer that treatment stopped working and it was time to take a look at new options. I underwent another biopsy and this time – hallelujah! – there were cancer cells in the sample. Not a lot. Only 20% of the sample  was cancerous. The rest were normal cells. Pretty remarkable, if you ask me.

The findings: My DNA, as far as they can tell, wasn’t preprogrammed for cancer. That means the cause is likely environmental.  As far as the tumor’s DNA, researchers could only find three things wrong with it. For one, my AKT1 “is mutated at low frequencies” – meaning the gene is broken. This gene has to do with putting together proteins so the cell can carry on healthily. I also have an amplification of two genes – PAK1 and PTP4A1 – meaning, there are far more of them than a healthy cell needs or has.

The good news is that there is a drug in clinical trials called AZD5363 that turns off the AKT1 gene. More specifically, one of the three clinical trials available targets breast cancer, using the drug in combination with both an anti-estrogen drug and an anti-androgen drug. Turns out, my tumor is scarfing down both of those hormones.

The bad news is that it’s very unlikely I’ll qualify for the clinical trial because my cancer is only in my bones, a clinical trial exclusion. Researchers like to look at tumors they can see, not tumors mixed up with bones that are hard to get a read on.

Still, I’m not undaunted. For now, I’m on a low-dose chemotherapy drug called Capectitabine that seems to be working. My blood tests are coming back nearly normal. I’m heading for a PET scan in two weeks which will let me know for sure, but so far my blood tests have been reliable. According to research by the MBC Project, this drug seems to work for a longer period of time than other treatments. I’ve been getting about 18 months out of a treatment before it fails. It would be great if I could get more time than that.

Second, the FDA is liberalizing it’s “compassionate use” policy. This allows a patient like me to appeal for a promising drug, even though I wouldn’t be included in the clinical trial. It’s a deal the pharmaceutical company or researcher would also have to sign off on (particularly because they offer the drug for free under compassionate use). A recent study showed that when asked, drug companies usually say “yes.” We’ll see if that changes with the new FDA policy.

Fighting cancer is a lot like playing pool. The goal isn’t just to sink a ball into a hole, but to also line up the next shot. For me, that means reaching out and making contacts among researchers, drug companies or the FDA who will be beneficial when this treatment fails so I’m not flailing around when it does. I learned this past summer, the appeals process can take longer than I have to give it.  I just don’t have time for the learning curve.

In the meantime, I’m tuning up my brain, reading books like The Organized Mind” Thinking Straight in the Age of Information Overload by Daniel J. Levitin, which has a chapter titled: Organizing Information for the Hardest Decisions When Life is on the Line. I’ve learned that going forward I’m going to be forced to make life-altering decisions with limited information that is constantly changing.  I may make a decision today and tomorrow get new information that would change the decision entirely. Sometimes I can change my plan based on the new info, sometimes I can’t. The best I can do is prepare a strategy that allows me to evaluate the best option in the moment.

For now, that will have to do.

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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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Ibrance Romance

clinking glass

AS GOOD AS IT FEELS, LIFE’S ABOUT TO CHANGE AGAIN

An oversized brown box arrives on the front porch. Inside is a plastic bag. Inside that, is a small bottle, maybe three inches big. Inside that are 21 Ibrance capsules which will take me through the next month of this leg of my cancer treatment.

The bottle of pills cost $10,000 a month, so I imagine it doesn’t seem indulgent to the specialty pharmacy to send it out overnight in this oversized package. The plastic, resealable bag is thick. I can think of a million reusable ideas for it if it didn’t contain the ominous skull and cross bones and a warning that reads: Dangerous. Toxic. Chemotherapy drugs. Do not handle.

I wonder what my trash men will think of me. And I realize I now live in a toxic world, one where I can no longer recycle or repurpose. One where there’s no turning back.

According to my first pathology report five years ago, my cancer cell was an estrogen-hungry fool, making her easy to decimate. I agreed to an aggressive IV chemotherapy treatment that shrunk my tumors to mere slivers, and the surgery and radiation that followed erradicated them entirely. I endured baldness, bone pain, nausea and weakness that I thought I’d never recover from.  For my efforts, my doctors were sure I was cured, free of the pernicious cells.

AND THEN THERE WAS THE ONE THAT GOT AWAY

But it turned out, one survived. My onocologist would later explain that tumors are like jars of pebbles and the first pathology report told of a larger rock in the jar. What was left was a grain-like piece of sand. This cell didn’t eat much estrogen. She was very slow growing. I called her my Crack Whore cell, because it was amazing she existed, let alone thrived in the Country club setting that’s my body. My Muffy and Buffy cells were outraged that she’d gained admittance. They want her banished.

I agreed, of course. And so we sought to oust her with a combination of drugs. One, called Xgeva, fortified my bones, which is where she took residence, relegating her to a cardboard bed existence outside a barred –bone entrance. The other, called Faslodex, filed the edges off the estrogen the Crack Whore feeds off of so she couldn’t grasp them when they floated by her. The third, called Arimidex, leeched the estrogen out of my body, in an effort to starve the Crack Whore completely.

SO WE ROCKED HER WORLD

In the beginning, the new hostile environment worked. The Crack Whore stopped having babies and Muffy and Buffy filled in with their own children.

Then after about six months, the Crack Whore realized she didn’t need as much food, didn’t mind the cardboard bed and started pimping herself out again. Judging by the CT scans I had last month, she hasn’t given birth, but she’s likely pregnant along with her other Crack Whore offspring.

So last month, I started  a new approach. Nix the estrogen leeching drug and replace it with the Ibrance, a drug that blocks proteins the cancer cell needs to replicate. A Crack Whore cell tubal ligation of sorts.

THE MARRIAGE DILEMMA

I call it the Ibrance Romance. When I started taking the drug, it seemed so much better than anything else I’d been on. I was in love. Three weeks into it I crossed the matrimonial threshold and suddenly thought  to myself “What have I gotten myself into?”  Now I wonder if I can endure living with it the rest of my life or if I’ll scratch its eyes out.

While my doctor told me I shouldn’t experience any side effects from the Ibrance, he explained that the drug suppresses my bone marrow – that’s the place where red and white blood cells are made – so I will likely see my blood counts go down. I need to go in for tests to be sure they don’t go too low, in which case I’ll need to take a break from the drug or go off it completely. For that reason, I can only be on the drug for three weeks at a time, with a week off to give my body time to replenish the damaged bone marrow.

It’s a bit like going into Muffy and Buffy’s den and messing with their Netflix streaming. But knowing that Muffy and Buffy are the Country Club set, I kept them preoccupied with activities. I make lots of dates with friends – many who are in the same boat – to run, bike, swim, walk. Keep our endorphins up, the dopamine pumping, the serotonin flowing. For Muffy and Buffy, it’s a cocktail party and they didn’t miss NetFlix.

PARTY’S OVER

Then came the hangover. Searing pain in my bones that were rebuilding themselves, from a restless aching in my toes up through my long, leg bones to a burning in my rib cage and pounding in my head like I’d been hit with a baseball bat. I took a pain reliever, which didn’t much help.

I decided to respond to pain with pain, longer runs that inflame my hip flexors, cancelling out the bone pain, which works until I have to go to sleep.  And then, even that stops working.

The pain is so great, I call my doctor for an answer, something stronger to relieve the pain. And while I wait for him to return my call, I begin to cry. I cry because it hurts. I cry because I know I now live in a toxic world where I can’t recycle or repurpose and there’s no going back. I cry because my body has to work so hard to heal itself and there’s nothing I can do to change that. I cry because I know this is the tip of the iceberg, that I’m in the rabbit hole and down is the only way I can go.

I cry until I hear a knock at the door. I wipe my eyes, as I hear giggling and clinking glasses on the other side. It’s Muffy and Buffy.

“Cocktails anyone?” I hear them yell on the other side.

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Resiliency Training- What It’s Really Going to Take to Bounce back

A friend handed me a newspaper article offering eight tips on ways to develop resiliency. When I read them it hit a nerve. The tips were a bit trivial and didn’t go far enough, as far as I am concerned. After mulling it over for a few days, I went back and revised the list (which I’ve left in italics). Here (in boldface) is my take on what it takes to be resilient:
1. Build and maintain strong relationships….The truth is, your relationships are about to go through a hurricane. Those who have stood by you to this point may fall away. It may be because they haven’t addressed their own issues. It may be because they just haven’t experienced what you’re going through. Some you’ll need to detour from. Some you’ll need to drop entirely. To deal, you’re going to want to pull away and “tough it out.” But the lesson is, people are not always loving or loyal. Forgive them, which doesn’t mean they’re not assholes, just that you’re not going to dwell on it. Instead, put your time and energy into relationships that are working.
2. Do something every day that is meaningful….Sometimes life doesn’t give you the option to do this. Sometimes it requires long stays in hotel rooms or hospital rooms or inside court rooms. An easier task is if you need joy, do something for someone else. Make a child smile, hold the door for someone, pay for the person behind you in line in the coffee shop or at the toll booth. It will bring you out of whatever funk you’re in and make you realize the world is a bigger place with bigger problems than what you’re going through.
3. Learn from experience that feelings are fleeting and you’re not always going to feel this way. At times it was hard for me to look past the anger, sadness, betrayal, grief even depression I was experiencing. But somewhere deep inside was a voice that said “This too shall pass and the only way out is through.”
4. See change as an adventure….This can be really hard when change is pummeling you day in and day out and hope seems to have abandoned you. As difficult as it seems, make friends with your fear, regret, anger, grief. As Buddhist Thich Nhat Hanh says, invite it into your living room. Ask it to put up its feet, offer it a cup of tea. These difficult emotions are going to be with you for a while, so you might as well befriend them. As Pema Chodron says” How do you get comfortable with uncertainty? Get comfortable being uncomfortable.”
5. Take care of yourself with a healthy diet and exercise….Better advice: Be gentle with yourself and trust the bounce. A year after my sister’s death we experienced a brutal winter, encased in ice that made it impossible to get out and exercise. So instead I stayed home and made lots of chocolate chip cookies. Many of them I gave away to the police and public works guys who were putting in long hours removing the snow; to neighbors who had shown me kindnesses; to an attorney who represented me pro bono while my father’s angry ex-wife chased me through the legal system, filing frivolous motion after frivolous motion just to antagonize me. But I also ate a lot of them and in the process gained 10 pounds. Until that point, every year I had made a New Year’s resolution to lose 5 or 10 pounds. But it wasn’t until I was 20 pounds overweight that I was actually motivated to lose the weight. I joined Weight Watchers in March with the goal of not only losing, but keeping it off. A year later, not only have I kept it off, but I continue to lose – albeit slowly. My point is, I ate those cookies with wild abandoned, which is what I needed to get me through that desperate winter. And when I was ready – when I hit my bottom – I bounced back. I’d learned that I could trust that.
6. Be proactive. Decide what you want and formulate a plan to get it….Truth is, life doesn’t go as you plan and often it has its own agenda. I have reams and reams of goal lists, action steps, crossed-off to do lists and I am no closer to my goals than I was five years ago, not because I’m not taking steps, but life has had other plans for me. This step is great for those still living under the illusion that they’re in control of their lives, masters of their destiny. Resilience is accepting that life is 10% of what happens to you and 90% how you react to it. The rest, you just gotta let go of.
7. Keep a gratitude log and when you’re stuck go back and look through it…I am a huge proponent of gratitude lists. I have several gratitude notebooks, a journal I write in daily that I always end with five or six things I’m grateful for. I also have a “mindfulness” eating habit where just before a meal I thank all of the people who have brought it to me (farmers, truckers, the grocery store clerks, etc.) wishing them happiness and health. When I look back on these journals though, I find that most of the things I’ve been grateful for are gone. My father, my sister, my good health, a sunny day has given way to rain, etc. Therefore, I’d say gratitude will help get you through moments of intense pain or difficulty so it’s a good habit to cultivate. But it will also show you how fleeting life is, and therefore how important it is to recognize, in this moment, what’s going well because there’s a good chance it won’t be there in the next. The rest, though, you just have to let go.
8. If you don’t feel these tips are working see a mental health professional….My advice: No matter how bad things are, don’t lose your sense of humor. Even in tragedy there is absurdity. If you find you can’t laugh, definitely go see a mental health expert. Also, don’t be afraid to go on medication if you need it. You’d take cough medicine for bronchitis, antibiotics for an infection, the same for anti-depressants. There are some mild ones out there that help put a brick under your foundation when you can’t feel the ground under your feet. You don’t have to stay on them forever, but healing can only take place when you’re grounded.

Believe me, one of the greatest lessons in resiliency is knowing that you’re completely vulnerable and you’ll still find a way to make it through.

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The Brave New World of Stage IV Cancer

Recurrence is a funny world. It’s the one thing we all dread until it happens. I think it’s because our brains are meant to solve problems. Once it has all the information it needs, it begins to come up with an explanation that is settling and a plan for a future. In my case, once all the tests were done, my brain had decided that my body had a repairing glitch. Having driven a lot of old cars with strange glitches, like windows that wouldn’t roll up in the rain. or wouldn’t start on an incline, my brain was used to computing a solution to the problem. It has resolved that with some minor medical intervention I’d be able to get back on track. After all, I felt and looked incredibly healthy.
When I went in for my hash-out-a-plan appointment, I was not ready for this strange new world of Stage IV Cancer with its new vocabulary – incurable and a goal of palliative care. To me, palliative care meant hospice. And the fact that I felt  so good and was still healthy and we were still entertaining more aggressive treatment meant we had loftier goals than that. I was willing to make a deal. I’ll take the word cure – in all of its forms -off the table when speaking about my cancer. But my goal is flat out remission, the “cure replacement word.” And I’ll settle for not knowing if I’m actually cured until I die from something else.
When I left the doctor’s office that day I felt demoralized by the new lexicon. And then I got angry. I decided that night that I define wins in this battle, just as I draw the battle lines. Not cancer. Not my doctor. Me and my body.
The next time I saw my doctor I told him adamantly, ” Remission is in my future. And that’s my story until it’s not my story.” He smiled and nodded. And now I see, remission is only part of my goal. The other part is to change the way we talk about Stage IV cancers, because many of us will live long, healthy lives, go on to fight other cancer battles and die from completely unrelated causes.
What I mean is this: No matter what our diagnosis is, what our doctor says or what language he or she uses, it’s the story we tell that defines our battle. Cancer is so unpredictable and its remedies are changing so rapidly, no one has an answer for any of us. And when there are no answers, there are choices. And our choices can change, just was we will be changed by them. We don’t have to be afraid. We can take the risk and enjoy the ride. It doesn’t mean that at times I don’t have that pit in my stomach feeling. Then I remind myself: It’s just the roller coaster of life – and that’s the feeling you get when you’re on the downhill glide.

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It’s an evolution not a revolution

Hello old friend. It’s been a while since I’ve written and so much has changed. At the beginning of the year, you know, the month of January when you’re fresh and bold and ready to make the changes you need to get things done and feel accomplished, I made my appointment to have my final implants put in. Long story about why I haven’t had it done sooner. A story that gets even longer. Implants are a same-day surgery which require a whole bunch of silly tests and doctor sign-offs. One of those tests was a routine blood test. Nothing to write home about. Until my oncologist called out of the blue looking to schedule an immediate appointment. That appointment led to a few more blood tests, a couple of scans and a phone call in a restaurant from the oncologist to say the cancer is back, riddled up and down my spine and rib cage.
How was it that I didn’t crumble right there and then? Some things I’ll never know the answer to. It had been only two years since I’d undergone the horrors of chemotherapy, radiation and surgery. Two years since my sister took her life, unable to live with the ravages cancer had left her with. And here I was at the precipice again.

January gave way to February and then to March, whose frigid air blew in a new drug regime that include a painful monthly shot in the ass and one in the arm and a new daily pill. Combined, they forbode of hair loss, fatigue and a continual pain in the ass.
Stage IV cancer is a different world from all the other stages. But it’s still a world and one I can live in. It brought with it a new vocabulary – incurable, inoperable, palliative care. Words I didn’t want to hear or believe. Ones I’ve since stricken from my dictionary. And so I revisit this blog with a new message, a new story that looks differently at the past as well as the future – but a future that still is bright and full of hope. And so old friend, walk with me as I tell you my tale.

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