Tag Archives: breast cancer

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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Right to Try is a lie

I will prevailWhen the President signed the Right to Try law at the end of May, I suddenly went from persona non gratis as a #preexisting condition to a terminally ill darling  whose life Congress and the administration were gushing to help save.

That was until yesterday when I actually tried to use the law to my benefit.

Maybe you’ve heard of this thing called “Precision Medicine” which is ushering in a new age in cancer treatment. Thanks to DNA decoding, cancer patients like myself can have their tumor’s DNA decoded to see if it offers any new information for treatment options.

In my case, new pathology shows my tumor is 100% androgen positive, in addition to being estrogen positive. That means the tumor, now deprived of its estrogen feast because of the numerous anti-estrogen drugs I’ve been on, is now slurping down androgen to survive.

The problem is the anti-androgen drugs on the market are so far only approved for prostate cancer, not breast cancer. There are clinical trials underway for breast cancer, but I don’t qualify for them.

That’s where the Right to Try law offered some hope. Its goal, at least we were told, was to give terminally ill people like myself the option of trying drugs that weren’t yet approved by the FDA for treatment of my type of cancer, but had shown promise. All I needed to do was sign an informed consent that said I am willing to serve as a guinea pig and accept all the risks that come with it.

I knew going into it there would be appeals and denials. One thing I didn’t expect was how cavalier my pharmacy benefits manager Prime Therapeutics would be. My oncologist scheduled a peer-to-peer appeal – where their doctors hear out her arguments over the benefits of this drug – to take place while she was on vacation. For whatever reason, they couldn’t make the call and rescheduled it a week later.

I’m only a terminally ill patient who’s not on treatment. What’s another week’s wait?

That appeal was schedule for 11 a.m. yesterday. When the panel failed to make the call, my oncologist’s team went to work tracking them down. An hour later the benefits manager sent an email saying the appeal wouldn’t be heard. End of story.

Obviously I was frantic. Didn’t they know about this Right to Try law? Certainly my patient rights have been violated. I spent the next hour looking for news articles, testimony, anything I could find about it. Finally, I found the text of the law.  One, single page. I’ve never known a law to be written so succinctly.

When I read it I learned that it offers patients nothing, in fact it expressly states that it creates “no mandate or entitlement” for patients. The only thing it does is let drug companies off the hook should they agree to offer me the drug, it doesn’t work or I get some horrific side effects and want to sue.

This point was completely missed by the press coverage of the new law, which went to great lengths to talk to doctors who obviously don’t spend a lot of time with the “terminally ill”  but were more than willing to talk about how innocents like myself were now sure to be duped or misled by the holy grail of a treatment promise.

Even the law as it’s written seems to see those of us who are terminally ill as frail, bed-ridden, desperate folks looking for some Hail Mary pass that will buy us a few days or a month of life.

Sorry folks, that’s Hollywood, not life. Most of us live quite active, robust – even athletic lives. The way we extend those lives is a series of running plays – drugs that we’re guaranteed at some point will stop working, but that have added days, months, sometimes years to our life.

The more drug options we have to stave off our disease, the longer we have to live. And hopefully somewhere in that timeline a more effective treatment comes online.

In order for a Right to Try law to be effective, it needs to address all the players – the drug companies, the health insurance companies, doctors, hospitals, patients, caregivers and researchers.  And we need to see ourselves as part of a team whose goal is to create optimum health, quality of life and longevity.  We need to lose this “us against them” mentality where the patient seems to be the biggest loser.

There’s a lot of reason to hope with what’s going on in the world of cancer. But what’s the use of any of it if patients can’t take advantage of the progress being made?

 

 

 

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The math of life

While none of us can know how much longer we have to live, being diagnosed with an incurable cancer makes you start doing some math in your head.
In my case, estrogen-positive, bone mets only patients have a median lifespan of 8.6 months from diagnosis, at least according to the latest statistics. That means half of us die before reaching that number, and half of us live longer. It’s not an average, which would be near impossible to calculate. The National Institutes of Health barely counts those of us who have metastatic breast cancer. While we do know one of us dies every three minutes, we don’t know how long each one of us lived with disease before succumbing to it. We also don’t know the particulars, such as what stage they were when they were first diagnosed, the pathology of the cell or where the cancer lodged when it metastasized.
With Artificial Intelligence and machine learning getting into the game, we will soon be able to track that information and make a more reasonable guess. But for now, here’s the equation I’m toying with.
I have 8.6 years median survival. Research shows if I exercise, I can add 40% to that total. That gives me another 4.8 years. If I  develop a strong social support system and have adequate access to a medical team who can answer questions, add another 5 months.
So far I haven’t been able to find any research that shows that diet directly affects lifespan (if anyone knows of a study, please share).
Based on those calculations, I have a median survival of 13 years and 10 months. I’ve already survived 3 years and 2 months of that.
On the plus side, being treated at a research facility like Memorial Sloan Kettering gives me another edge. There’s a very strong chance that the cancer research facility will be host to a Phase 3 trial of the next viable, life-extending treatment, which I’ll be able to get into.
That cuts out the six months it will take the FDA to approve the drug once the trial is complete, the year it will take the pharmaceutical company to get it’s marketing pipeline up and running to offer the drug to the public and the six to eight months it will take ASCO to announce it as a standard-of-care treatment and for health insurance companies to agree to pay.
That means I’ve cut at least two years off the time it would take me to have access to the treatment in a community hospital setting.
It’s not a perfect science, nor is it a perfect equation. But until Big Data has a better answer for me, at least I have a benchmark.
And every day the finding of a new study is announced, giving me another chance to add more time onto the clock.
Einstein was right, space and time are relative. limited only by the speed of light. With strides being made at an exponential rate, cancer research may soon catch up to light speed. At that point, the impossible becomes possible.

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A river runs north

May 1 is a day of seduction.
Without fail, it arrives cloudless and sunny, warm and fragrant, casting off the vestiges of a cruel winter.  Fear? Toss it out the window. Success is an open road looking for someone to tear it up.

I remember feeling that way 10 years ago, before the Nishisakawick Creek coughed up its sedge to form an island where its mouth meets the Delaware River. Back then there were a few scant sycamore trees that jutted up from the river, catching dead leaves and twigs in the rapid flow. There were no signs that the island would one day block the creek’s entrance, forcing the river to flow up instead of down. Had I seen it, I tell myself, I would have known.

But the truth is, we never really know life’s irony until it stares back at us from the page. And this story is no different. May 1, 2008, I started out on a morning of hope, launching a new business with my mother and father as partners. Sure, we had failed as a family unit. They’d divorced some 30 years earlier. But we’d learned from our failures. Time is a great healer, afterall. We were no longer mother, father and child, but adults who had experience in the world. Our business venture was destined to succeed.

As I made my way down River Road that morning, fire police detoured traffic onto Dark Hollow Road where I’d normally turn anyway. A sign, I was sure, that I was on a guided path. “A tree down,” I thought before losing myself in other mind chatter.

My mother would arrive late, complaining about a power outage that kept her from drying her hair. We huddled, vowing to knuckle down, make calls, do whatever it took to make this venture work.

Uneven road ahead

Only now do I see the irony. Yes, a tree did come down, ill-timed, crushing my stepfather’s car and killing him instantly. Nine months later, my father would be diagnosed with lung cancer. Our fledgling business venture would be buried along with him. My sister’s crazy outburst at his funeral wasn’t inconsolable grief, but a softball-sized tumor lodged in her brain.

I’d pay only scant attention to the thickness I felt, like a jelly fish, in my right breast while showering at my father’s house after his death. “Perimenopause,” I thought, before my mind wandered to the mold in the grout lines and whether I could adequately clean them or would need a professional before I could put the house up for sale.

By then, a large tree trunk had lodged between the river sycamores and on a sun-baked August day if you looked real hard you could just about see the sedge that was starting to mound at their base, not even enough ground to stand on.

Running in place

The next May 1 I was in Jacksonville, Fla. helping my sister navigate a life, post-cancer, that had taken a chunk of her brain and part of her mind, leaving her at times manic and at times depressed. It would be another beautiful, cloudless day. She would come and watch me run a 9K race, sitting on a curb, throwing up in the gutter from the mega doses of steroids she was on to reduce the swelling caused by the brain radiation. My mother was there. A new venture. Not of our choosing. One that had us chaffing life’s bit.

By the next May 1st I was bald and scarred, recovering from chemo and surgery. It was cloudless and sunny and my neighbor would insist on me joining her for a long walk with her dog along the river. The river sycamores were getting thicker, their trunks bent over nearly parallel to the fast flowing river. A piece of opaque, ragged plastic got caught in one of them, rattling in the wind like a sail.

Rising from the ashes

The next May 1st, cloudless again, the plastic gone and with it wind from my own sails. I’d buried my sister nine months earlier and felt bewildered by the world I was now living in. By now, the sedge had settled, forming two islands just off the river banks. Enough ground to walk on with a sedge sandbar starting to fill in between the two shorelines where marshy grass grew. By summer, the marsh choked the creek flow, pushing the river northward along one of the islands.

I made friends with the kids who moved next door and we’d spend summers exploring the islands, looking for fossils, feathers and bones, making up stories about where they’d come from or how they’d landed there. Taking picnic lunches, throwing sticks for the dogs and swimming.

We built a bridge across the north flowing river so we could get to the island without getting our feet wet. Stone pile sculptures magically appeared, as did a stick hut where we could hide out from the strong, summer sun.

Finding a new flow

Three  more May 1sts passed, all cloudless, sunny and warm. My hair grew back, and so did the cancer. The new drugs I was on fought it back until the river flowed north again that summer. By then, people were finding their way to sedge island to fish, leaving trash and the rotting spoils of their catch. Scrubby shrubs filled in between the sycamores. The kids were now older and we stopped our treks to the island, except for the dogs who still liked to walk its perimeter while chasing sticks.

Last May 1st was dark and overcast, and yet my mood was buoyant. I’d just come home from a writing retreat with plans to sign up for summer triathlons, eat healthy and start writing projects anew. I’d moved my treatment from a community hospital to a research setting. The new regimen was working and my options for future treatments, endless. I’d weathered the emotional move from one oncologist to another.  The river flowed north, but I was used to it.

Defying logic

Here I am today, another May 1st. Sunny, cloudless, warm. Tonight I’ll go to dinner with my husband and my mother. We’ll talk about my stepfather, our losses and the ones we still have yet to endure. The sycamores on sedge island are now about 15-foot tall, standing nearly upright. A bore infected the aged ash trees along the river bank. Their rugged bark looks starkly naked against the backdrop of the maples now budding. On my way back from the river, I walked past  pear trees in bloom. The pleasant fragrance caught me off guard. My throat tightened and tears welled up.

Life has turned upside-down. An author whose book on resilience got me through my darkest hour is now under indictment for enslaving a woman and taking photos of her. His words which once soothed now ring hollow. My family as I knew it has gone. Others have abandoned me, replaced by new friendships with deeper roots.

Yesterday I ran a half marathon with my other sister, her husband and my husband. We went out for lunch afterwards and my niece and nephew fought over who would sit next to me. This summer, I’ll take them to sedge island. We’ll look for artifacts and make up stories and I’ll show them how, defying all logic, the river runs north, but still it flows.

 

 

This post is dedicated to Stephen R. Hance, 1948-2008, who believed in me always. Pictured here, with my late sister Tracy Johnson Pollick. They always remind me that no matter what direction life takes, go with it, because even when a river flows up, it will eventually find its way down.

 

 

 

 

 

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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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Uncertainty Casts Grotesque Shadows

uncertainty-casts-grotesque-shadowsCancer has declared a stand-off. Not moving forward, not moving backward.
In some ways, this is the worst possible news. Had my numbers gone up, I’d be making appointments for scans, plotting my next move to enter a clinical trial.
Had my numbers gone down, I’d relax and coast. Get back to writing my novel and creating a new normal, instead of haunting medical research sites and online drug dictionaries.
Instead, my numbers stayed the same, holding me hostage in uncertainty. Rubbing my nose in my vulnerability.

When you’re feeling vulnerable, there are two roads you can take: Victimized Avenue or Pioneer Boulevard. Early on, I chose the Boulevard. But I have to admit, sometimes the Avenue appears like a shortcut, and I can’t help turning down it.

Yesterday I presented my clinical trials chart to my oncologist. He seemed impressed with the work I’d put into it. His practice is in the process of aligning with MD Anderson and will soon be offering that cancer research institution’s clinical trials. Four of my top five choices are MD Anderson trials.

My chart is in an Excel spreadsheet which can be hard to read on paper. So while I handed a copy to him, I also told him I’d email him a version. It would be easier to read and more importantly, easier to locate for a phone call he said he had with MD Anderson folks the next day. I grabbed a business card from his desk while he nodded earnestly.

When I got home, I went to email him the info, but his card didn’t have his email address. So I called his office. The receptionist told me she’s not allowed to give doctors’ email addresses out.  Her name is Anita. I’ve renamed her We Need A – as in we need a lot more like her. She mentioned that I could go online and find it.  I thanked her for the suggestion.

His email address isn’t online, but it wouldn’t take a third grader more than a blink to decode it based on the email addresses I could find. Within a few moments, I’d emailed him the chart.

But then I started to wander down the Avenue. Why hadn’t he told me about the email Cone of Silence? Why hadn’t he just been honest and either given it to me or offered me another solution? Was he just blowing smoke about the whole thing? Did he even have a phone call about clinical trials set up?!? Or the moment I left, did he just throw my chart in the trash and move on to the next patient? Most of all, mired in my vulnerability, I began to wonder, can I trust my quarterback to have my back?

Uncertainty casts grotesque shadows and the Avenue looks like a straight, well-paved road, before it veers off into ruts and potholes.  This part of the journey seems unbearable. My mind monkeys have taken the steering wheel while I dive in the back seat to subdue my nausea that’s intensified by the taste and stench of chemicals exuding from me, the result of drugs I’ve just been infused with. Drugs that may or may not be working and demand a lot from me in the meantime. Mind monkeys are poor drivers. It’s a wonder I ever give them the wheel. In my weakness, though, the offer of letting someone else drive is too tempting. I can’t resist. I hold my stomach as they careen over every bump and hole along the Avenue – and this far in, there are plenty. I pray we get back on the Boulevard soon, even though, at the moment, I’m not feeling much the pioneer.

This morning, I got an email reply from my doctor. A short thank you sent from his cell phone letting me know he’d received my info. It’s enough to make me park the car and wait until I’m feeling better to take back the steering wheel as we both head out onto the Boulevard.

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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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Fourth and goal and in need of a win

cancer goalsIt’s early September, the beginning of the final quarter of the year, and I’m looking at where I am in accomplishing my goals.

This year’s goals were pretty much the same as last year’s: Finish my novel. Finish renovations on our 1860s home.  Complete a few side projects like faux graining a cabinet or putting a quilt applique on some threadbare bedding. I admit, I know nothing about the last two, which means there’s a learning curve involved that’s slowing me down. Truth is, there’s a learning curve to all of this.

My inbox is filled with advice, templates to download, steps to take to move me forward. Everyday I take time to read those emails or fill out the forms, put a plan together. For a week or two I even put the time into acquiring the habits I need – whether it’s blogging or spending a half hour writing 500 words in my novel or making dinner at home every night for a week with fresh vegetables from my garden. Then I’m all high-fiving myself over finally getting through the mire and moving on with my life.

Until…I get to my monthly oncologist’s appointment. And then, my life gets derailed. January was “Let’s look under the hood.” February was scans, March results, April why don’t we try something new, May was getting health insurance approval, June dawned a day of promise as my number shot down, pain shot up with the new drug. July was managing side effects and trying a lower dosage, August was the reality that July’s strategy didn’t work so we’re back up to a higher dosage and looking for new alternatives, like clinical trials.  And here I am in September wondering where the year went and why I haven’t accomplished anything.

To be fair, I have accomplished some things. I did run a half-marathon with neighbors who became better friends in April. I did a triathlon in June and several 5K runs with a new group of friends.

Another good friend reminds me that I’ve continued to work on my novel, interviewed several famous people for stories I got paid to write, kept up with friends, have launched a campaign to run for borough council, researched cancer treatments and signed up for a conference to educate myself about clinical trials. I’ve mentored kids who live on my street. Volunteered to help judge a baking contest so I could write about it in my novel. I’m taking an online college course on doping, as the issue is a prominent theme in my book.

Still, I have a pile of magazines beside my bed that I can’t seem to get to read. And while I’ve had a lot of great lunches with friends who have helped me craft a plan or make a connection to move me closer to my goals, I still don’t feel like I’m making any progress.

So as I sit down to figure out how I’m going to accomplish in the remaining three months of the year what I couldn’t seem to do in the past nine months, I also ask myself how do I live alongside this disease and stop it from running my life as I’ve let it? How do I send it to the corner for a timeout so peace can reign in my classroom for the remainder of this period? And when will I be done with this lesson so I can move on?

 

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Hope, the Ship We Sail Upon

breast cancer hope Hope. That’s really what this blog is meant to be about. I think sometimes I forget that as I struggle day-to-day with the newness of recurrence and how I am trying to fit it into my life.
Hope is the raft that promises that there’s a shoreline awaiting me after cancer has torn my boat to splinters. It fuels the belief that I will live into my 90s despite the threat of this disease. And that I will be active and healthy until my last day.
Hope drives my optimism that something like a cure lies around the next bend. It may not relieve me of this condition, but it will allow me to live with it.
Hope is what allows me to smile, even when I smell like a refinery from the chemicals injected into my body to defeat those pernicious cells and everything tastes like metal.
Hope allows me to make plans – like running for town council or writing a novel or finishing renovations on our historic home.
Hope reminds me to enjoy the sunshine and focus on the things going right in my life – like making a living as a writer in a small, river town with neighbors who are supportive and friendly, the golden threads woven intricately into the fabric of my life.
Hope has drinks with me at outdoor patios with my family and friends as the sun sets on the river on a Friday night, when I speak giddily about the people I’ve talked to that week, whose story I’m grateful to have been able to tell.
Hope is that quiet voice on the bad days that says “you’ll get through this. You will prevail, no matter what.”
Hope is the belly laugh I have with good friends about days gone by, that at the time seemed dangerous and dark and now, looking back, seem hysterical.
Hope are the neighborhood children who knock on my door wanting to go for a walk with me and my dogs, to make a fire and go for ice cream, reminding me that life is too short not to stop, take time out and enjoy it.
In then end, these forces remain: faith, hope and love. The greatest may be love, but hope is the ship that we sail upon and faith is the wind that fills her sails.

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