The sign of the phoenix

On this morning’s walk a bird dropped from the sky, dead at my feet. I nudged it, just to be sure. Nope, not a breath of life in it. And I smiled.
I smiled because I realized that it meant I have changed, permanently, irreversibly. The old Liz would have viewed it as an omen of things to come. But the new me sees death as shutting the door on things that have passed. The ending of a chapter, and the beginning of a new one.
I smiled because even though a new chapter brings its challenges – I mean, what would a good story, or good life for that matter, be without challenges? – it also brings opportunities and hope.
I smiled because it means I’ve let go of a lot, so I travel lighter.
I smiled because I’m ready for what this new life holds.
And it holds a lot of promise at the moment. For one, a new med regime I’m on is working. My numbers are rocketing downward, almost back to normal range. That means the cancer is being held at bay. Good news, yes. The challenge is that the biopsy sample was not enough to get a good genomic read on the cancer cells. And with this medicine working, my oncologist isn’t motivated to do any more until the cancer presents as a problem again.
The drug combo – Exemastane, which sucks the estrogen from my body, and Everolimius, which goes into the cancer cell and turns of “switches” to keep it from growing – has led to an all-over body rash. Gratefully, one of the advantages of Memorial Sloan Kettering is that there’s a doctor for everything. I saw an oncology dermatologist, and two creams and a pill later, it’s virtually gone.
I smiled because I’m getting a lift from new friends I’m making since getting involved with a group called METUP which advocates for more research funding for metastatic breast cancer and removing barriers from clinical trials, so those of us who could benefit from cutting-edge research can be a part of it. It’s based on the AIDS activist group ACTUP, which held die-ins to bring attention to the number of people dying from the disease that in the early 1990s had no cure. Today, people with AIDS live long, healthy lives with medication. That’s where we want to be.
This week alone, I sent out press releases on the group’s behalf, made follow-up press calls, fired off a letter-to-the-editor when a newspaper reporter refused to cover a die-in planned in Philly this weekend and emailed my congressman to oppose changes to the Affordable Care Act that could end up killing me. I’m not just talking the talk, I’m walking the walk.
I smiled because I’m heading to a Women Reading Aloud writing retreat this weekend thanks to a scholarship for writers with cancer. It’s named for a sister warrior I knew who has passed on, but whose spirit I’m glad to embody.
I smiled because I’ve just tripped across a literary agent who’s written a children’s book that I’ll be writing about. We’ve only spoken briefly, but agreed we need to get to know each other better (and I haven’t even told her yet I have a novel in progress).
I smiled because I’ve been asking the God I pray to to take away my anger and replace it with resilience, to replace my inertia with motivation, to replace my ruminations with creative energy. I smiled because the bird, a phoenix,  tells me it’s so.

Activism, a tenet of good health

We all know that exercise, diet and getting enough sleep are the cornerstone of good health. And now I add another: Activism.
In the fall, thanks to a bipartisan effort, Congress passed the 21st Century Cures Act which freed up more than $5 billion for cutting-edge cancer research.
I knew that research didn’t necessarily mean something directed at my situation. I’d made peace with the fact that I’d have to put energy into activism. At the time, I thought it meant doing battle with the FDA, research hospitals and drug manufacturers to get into promising clinical trials for other cancers, but weren’t looking at mine. I’ve been following the stories of others who are in the same boat, studying how they’ve won their battles. I was ready to spend money going to oncology conferences and research seminars across the country to meet the folks who could open doors for me.
Silly me, thinking all my energy would be going into a plan to heal me, that might mean a cure or at the very least, a manageable, chronic illness. What a difference six months can make.
For the past two months I feel like I’ve been running to stay in place, making calls to my legislators, writing letters, attending town hall meetings, pleading with friends to help me make my case to keep my health insurance just where it is.
See, I’m in the sights of the GOP right now, between my disease – a condition of bad, genetic luck – and my age. I’m precisely the target the plan will hit hardest if it’s passed. The person who will see her rates go up 1000%, definitely outpacing my income.
I certainly didn’t ask for this disease, let alone it’s cost. So far, I’ve done my best to bear it squarely and bravely. And I’m not here to whine.
But I am definitely standing up to say that it’s unfair to burden those of us who are struggling just to survive with massive debt. The pressure alone is enough to take our life. And I should know. I’ve lost a family member to just such a situation.
I paid into the system when I was young and healthy and didn’t use it. My premiums offset the cost of people like me who went before me. And now the GOP wants to cut me off and call it freedom of choice.
Just when I was beginning to have hope for the future, I’m now saddled with the concern that should there ever be a cure, will I be able to afford it?

Finally, good news for metastatic breast cancer

Breast cancer and exerciseProbably the hardest thing for me to embrace about my situation is the lack of answers. My doctor can’t tell me if a med she’s prescribing will work, or if it does, for how long. The only thing she can guarantee is that at some point it will stop working.

So a study released today that says exercise can reduce the risk of dying from breast cancer by 40% is probably the best news I’ve heard since the advent of chemotherapy.

To put it in perspective, many cancer drugs that the FDA approves have success rates lower than that.

The study goes on to debunk the myth – and relieve our guilt – that what we eat has anything to do with combating the disease. “Women with breast cancer don’t need to make extreme diet changes (like cutting out meat, dairy, sugar, soy, etc.),”  said Dr. Ellen Warner from Odette Cancer Center at Sunnybrook Health Sciences Center in Toronto, who coauthored the review of more than 70 research articles and publications. “There is no evidence any of these are effective. They can eat anything in moderation and following Canada’s food guide would be helpful if they don’t know much about nutrition.”

Yes, she concludes, a diet in high-saturated fat definitely spells trouble, while soy products – which at times get a bad rap because they mimic estrogen – can actually improve longevity.

Exercise, on the other hand, is the Holy Grail. The study recommends 150 minutes of activity per week, which it says less than 13% of breast cancer survivors do.

I count myself among that 13%. And I can only add my own anecdotal evidence, that exercising is what is keeping me sane. Working out improves my mood. It chases away the fear. It grounds me. It’s my Xanax. Yes, it helps me keep my weight in check. And I’d hazard a guess that by using my body more, it makes it healthier, more robust and therefore, on some level, able to fend off the rapid spread of this disease. If I had any recommendation to give someone in my situation, vigorous, heart-pounding, sweat-gushing exercise would be it.

More importantly, though, this study gives me something I can actually DO to keep my disease in check. It takes away my helplessness which can lead to hopelessness.  And it takes away the guilt that I’m not doing enough.

As cancer patients, we need more information like this – studies that show us habits that lead to better outcomes. I’m willing to make many lifestyle adjustments, but I need to know that they are having an impact. Someone telling me that he beat cancer by juicing or she did by ingesting a lot of cannabis is all well and good.  But a study that shows that thousands of people did one thing and changed their lives – well that’s something I can take to the bank.

 

 

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Hitting Reset

old-energySo there comes a time in this journey where all the battles I can fight are fought. Where all the calls that have to be made are done. Where the research can take me no further. The tests are performed and the results forthcoming. When there are no more decisions to make or actions to take. When it’s time to get back to life. And in this, I suddenly understand what it must be like for a soldier returning home from war.

“Warriors have found the journey home, the journey back to normal as trying as the battle itself,” writes Navy SEAL Eric Greitens in his book Resilience: Hard-Won Wisdom for Living a Better Life.

That’s where I am right now. And I’m feeling a little lost. This should be the easy part. This is what I’ve been fighting for – the chance to get my life back. To get back to writing about something different. To make up entertaining stories rather than writing from the trenches. To work on a publishing career. To get back to training for spring 5ks and summer triathlons. To enjoy long walks with dogs. To plow through the pile of magazines and books alongside my bed. To laugh with the kids in my life. To enjoy my husband’s company. To relish in the excellent health I am experiencing in this moment.

So why am I feeling drained and defeated? What is this fear bubbling below the surface? Why am I feeling so inert? And how am I going to push past it?

I admit my head is still spinning from all it’s taken to get me here. The second-guessing myself, the fear of change, fear of the unknown. Will I be able to afford the new choices I’ve made? Just getting to my new doctor is costing close to $100 round trip. My new health insurance policy took a hit on the prescription coverage so drugs are costing another $100 a month or more. And I haven’t even received the bills for the new medical procedures and the deductibles they’ve hit. These are the things that worry and confound me as I try to move forward.

I know life has a way of working itself out. Paying jobs will come. It’s only a matter of time before I’m besieged by writing assignments, right? And despite threats of an impending snow storm, spring IS just around the corner, signaling hope and rebirth.

“People have a hard time letting go of their suffering,” said Vietnamese Buddhist monk Thich Nhat Hahn. “Out of a fear of the unknown, they prefer suffering that is familiar.” Is this what I’m doing to myself?

I don’t have any answers right now, just a vague notion that it’s time to hit the reset button and “get on with it,” as my great-grandmother used to say. Does anyone out there want to give me a push?

 

Shine On, Cancer, Shine On

breast cancer cellDear Cancer:
Today I ask you to be your bold, defiant self. To be virulent, naked, unabashed. To stand up to the acidic forces that will wash over you to divest you from the bone that’s just been sampled from my body. When I look at the spot on my chest where doctors have stolen you away from, I realize that you likely weren’t deterred by the radiation beams that glided over me for months after my surgery. I wonder, if I had listened closer, could I have heard you laughing? No, radiation didn’t kill you. You nestled in and waited until the coast was clear. The chemo cocktail, that still seems to limit my hair growth, dissipated.

So now, I ask you to be a survivor, a thriver even. Stand up to the tests that you’ll be undergoing so my doctors and I can understand you better, what makes you tick, what makes you thrive, what makes you so darn resilient. This isn’t a request I will make often of you. But in this moment, I hope we both agree, your survival is paramount. Show us your stuff. Bare those steely, mutant strains of DNA that keep you unashamedly colonizing throughout my skeletal frame. Proudly declare your proteins and pathways, your growth factors and enzymes. This is no time for shyness; it’s a time for you to shine. Shine your bad self under the lens of the pathologist’s microscope so that he or she can give us an inkling into your inner workings – your drive, your motivation. What fuels you, what inspires you, what motivates you. I want to know all. I am not afraid and neither should you be.

So please, cancer, make this your best performance ever. In this moment, we are one. And the answers? Well they can wait until your show is over. This is your time to shine.

Curiously yours,

Breast Cancer Conscript

And Now for the Glide…

It’s a new year, new eyes and a fresh start.
Last week I had my first appointment at Memorial Sloan Kettering, one of the country’s leading cancer research hospitals. It’s a bit like being admitted to Harvard or Yale as a cancer patient. Anyone who reads this blog knows the appointment was a hard-fought victory. I ran into issues with health insurance and had to upgrade my plan (and yes, that came at a financial cost). The first doctor I was referred to by a friend wasn’t taking patients. The second doctor, whom I chose based on research I’d read, had to agree to see me. The anxiety felt like being a student again waiting to see if I’d be picked for the dodge ball team. Ultimately, the second doctor said yes and I got the appointment.
It turned out to be a long day between travel and wait times. It was a half-hour wait to see the financial people who wanted to know about my insurance coverage, two hours to see the doctor, another half hour wait for blood work and then 20 minutes to get a battery of tests and appointments scheduled. To be a patient at Memorial Sloan Kettering requires patience (pun intended).
In all, I likely spent five minutes with the doctor. But in that time, she turned my world right side up. Without even having to ask, she ordered new CT scans, another biopsy and agreed to have the tumor’s DNA tested to see what mutations it has. These were the tests I was fighting my last doctor on. In his world, they offered no guidance. “Inactionable” was the term he used.
The same may be true at Memorial Sloan Kettering. So far, they are offering no better answers. But they are asking better questions. As Einstein once said: “If I had an hour to solve a problem and my life depended on the solution, I would spend the first 55 minutes determining the proper question to ask, for once I know the proper question, I could solve the problem in less than five minutes. ” I’m hoping he’s right.
Tomorrow I’m back in New York City to meet with a radiologist about getting a new biopsy. This will let us know how the tumor has changed since I’ve been on estrogen-depleting therapy that has stopped working. Have the drugs killed off all the cells that were fueled by estrogen? Or has the tumor become estrogen resistant? And if so, can the cells be made to hunger for estrogen once again? These answers are important to know when it comes to my next treatment choice. Should I remain on estrogen-depleting drugs or move directly to a low-dose chemo? Or, based on the mutations the genetic testing identifies, is there a clinical trial that may prove effective?
All of these are possibilities now. Hope is back on the table. It may not be a strategy, but without it, life is worthless.
More importantly, this leg of the journey has taught me something about myself, something worth honoring for when the dark days return. When push came to shove, I didn’t accept a doctor dismissing my concerns. Doors slammed in my face and yet I wouldn’t be turned away. I moved mountains to do what was best for me. Yes, it was hard. It was emotional. At times I felt defeated before I even began. But I persevered. When my questions weren’t answered, I continued to ask them. And even though this is costing me more in both money and time, I’ve decided I’m worth it.
There’s a very good chance that a cure will one day emerge from the hallways of Memorial Sloan Kettering. And when it does, I will have a seat at the table. I’ve earned it. And there’s no turning me away now.

Sailing on a Windless Sea

mayflower    My ancestors came over on the Mayflower. I’m sure there were days on that boat when there was no wind, maybe even weeks, and they wondered if they would ever step on land again.
I reach for whatever hope they clung to as my own windless sails sag at this point in the journey.
My last doctor’s appointment went about as I expected it would. My doctor, animated, on one hand telling me the next step is my call and on the other hand, red-faced, imploring me to dive into the dark magic of life on chemo.
Not that he’s offering any magic. Just rearranging the poison bottles on the shelf, basically. The first one is a sort of chemo light, It allows me to keep my hair, although promises some ugly skin rashes, possibly swollen ankles, sore, hard-to-walk-on feet. He tells me it may keep the cancer at bay for a year. Maybe longer. Maybe not. He assures me there are plenty of poisons on that shelf to slow death down. That’s how this next step feels – like I’m going from extending life to slowing death.
To his credit, he spent a long time answering my questions, In the end, though, he was pretty angry with me when I asked not to make any changes until January, when hopefully I’ve gotten word from the two research hospitals I’m pursuing for a second opinion – Dana Farber and Memorial Sloan Kettering. While he encouraged the second opinions, he villified the idea of staying on treatment that isn’t working. When the appointment was over, he didn’t ask to see me again.
I came home and dove into fast-tracking my appointment at Memorial Sloan Kettering, holding out hope that I’ll qualify for at least one of their trials. It turned out, my insurance wouldn’t cover the appointment, let alone the expense of a trial. Is there an emoticon for feeling overwhelmed, helpless and on the verge of hopeless?
That was the day before Thanksgiving. I took a deep breath and decided it was a problem I could solve later, after the holiday. For now, I’m here, I’m healthy and life is still good on many levels.
A few days later, I called my insurance guy and upgraded my plan to include Memorial Sloan Kettering. Now I wait for it to go into effect before I can set up the appointment.
In the meantime, I work on releasing this torrent of emotions I feel – resentment, anger, sadness, overwhelm, victimized. I try to piece together a new plan. A stricter diet, perhaps, more meditation. Alternative therapies. .
I read about people who have miraculously cured themselves of cancer. I try to figure it out.
I try to make peace with myself and the situation. An unruly disease, a doctor who can’t cure it and would be quite happy if I became someone else’s problem. I try to think about what future Liz would want – because that’s really what’s before me. There’s an expiration date stamped on me that no amount of medicine will change – at least in today’s cancer world. My only decision is do I want to forgo treatment and go out writhing in bone pain or do I continue my descent down the rabbit hole of chemos which will degrade my body and ultimately lead to a new cancer to fight and limited means to do it?
I’ve tried to ask future Liz what she wants. She’s upbeat, unrelentlingly so. She doesn’t give me many answers. Just tells me not to worry, that it all works out. I’m not quite sure what planet future Liz is living on, I just wonder if I’ll be able to afford the ticket to get there.

An Outlaw of Hope Hunts Down a Ghost

Outlaw of Hope     How do you kill a ghost?
That’s what’s circulating on the desert-like plains of my bones. A dark shadow. A deadly whisper.  Of course, we’ve given it a different name: cancer. I want to give it a human name: NED – short for No Evidence of Disease. According to my lastest scans Ned has decided that my bones are a great place to stretch out and settle in. I want to evict Ned. I’m just not sure how.
My doctor wants to use a flame-thrower, torch the chain-rattling wraith. He’s not concerned about how it will scorch my foundation. How it will char me with maiming, life-altering side effects just to push Ned into a corner and hope he quiets down for a bit.
He doesn’t call it a flame-thrower. He calls it “treatment.” One of the drugs will go in and turn off Ned’s interior switches along some path called M-tor. The hope is to make Ned curl up in a fetal position. We already know Ned isn’t going to leave. That option isn’t even on the table.
The drug is called Everolimus. WebMD  lists a number of body-damaging side effects such as kidney failure, lung scarring, mouth sores, nose bleeds, diarrhea, dizziness, headaches, weight loss, hair loss, mood swings. It could raise my blood sugar levels making me diabetic. It could raise my cholesterol. It can increase my risk for infections, maybe even lead to a rare brain infection. WebMD tells me that     “Many people using this medication have serious side effects. However, your doctor has prescribed this drug because he or she has judged that the benefit to you is greater than the risk of side effects.”
Really? Just to keep a ghost quiet?
My doctor tells me I am out of easy choices and a large tree has fallen across the path I’d chosen – clinical trials.
In the alluring world of clinical trials, I’d have Ned retested and researchers would comb it for genetic mutations and proteins. These are like locks that the cancer cells keep hidden from key-carrying, immune-fighting T-Cells. New drugs, called immunotherapy, look to decloak those locks, clean them up a bit and add keys to the T-cell’s key chain so they can find their way into the cancer cells and kill them. Once they’ve killed one cell, they’ll remember how to kill the next, so I won’t have to keep taking the drugs. My immune system will take over and do its job.
Simple right? Bye, bye Ned.
Except that Ned haunts my bones and for some strange reason bone “lesions” don’t qualify as tumors. They can’t be biopsied the same way cancer in my liver or lungs can. And so my options are limited.
My doctor tells me they’re limited only to outmoded flame-thrower treatments. Treatments that won’t kill Ned, only keep him quiet for a short time – if I’m lucky. My doctor has a handful of flame-thrower treatment options for me. We both know they won’t last long, particularly at the rate I’m going through them. This will be my third drug change in 18 months. In another 18 months to two years, I’ll be out options. My doctor has outlawed hope that there will be anything else for me by then.
I haven’t been dissuaded from the Holy Grail of immunotherapy. I’m willing to sustain the side effects the trials will ask of me. I know they’ll be short-lived. Yes, an amped up immune system can also do body-scarring damage, but researchers say it’s not permanent. The immune system can be held in check with steroids until it finds its rhythm and goes only after the cancer cells. It won’t be fun. But it holds the promise of exorcising Ned permanently.

Except now I’m in double jeopardy because I’ve chosen to become an outlaw of hope in my quest to rid myself of Ned. To do that, I need to shed both cancer cells and a doctor. And that feels lonely, betrayed, abandoned and on the brink of despair when I really need my strength for other things.

I’ve started calling on the clinical trials I’ve found for myself. Ones that don’t require a “measurable” tumor. I found one that I seemed to qualify for only to find that a biopsy of Ned living on my bones won’t work. Ned has to move to my liver or lungs or…let’s just say, Ned has to stretch out quite a bit more.

The clinical trial people I’ve spoken to have been far more upbeat. They’re more eager to welcome an outlaw of hope even if they don’t have an answer. They invite me to make an appointment and let one of their doctors help me find the right path. And even thought it’s not an answer, it’s hope, which is like gold to an outlaw like myself.

I understand there might not be a clinical trial open to me today. That I may have to wait a bit for the tree that’s fallen across my path to be cleared. But I also know if I’m at a research hospital – like MD Anderson or University of Pennsylvania or Memorial Sloan Kettering or even Dana Farber – I’ll be like Cindy Lou Who from Dr. Seuss’s Horton Hears a Who. That small voice that when added to a chorus of other Outlaws of Hope on the planet will finally be heard. And maybe our life sentences will be commuted. Maybe we’ll find a way to kill the ghost.

 

Cease-Fire Over, Let the Battle Begin

Cancer Battle Prep  My cancer has gone the way of the Syrian government and declared an end to the cease-fire. I got a call early yesterday morning from my oncologist, and it wasn’t to tell me he’d found a cure. My numbers are up. Way up. Rationale Liz said “Yippee! Clinical trials here we come!” Emotional Liz said “WTF?!?!?!??” So I hand her the keyboard and let her type.

I wait on the scheduler from his office to call to set up scans to see what’s really going on inside my body. Who was it who said “The waiting is the hardest part?” The scheduler is a nice person, but she doesn’t understand the anxiety involved in sitting by a phone that isn’t ringing. So as soon as I hang up with my doctor, I scrounge around the house for some chocolate bars awaiting Halloween, shove them in a postal mailer with a “thank you” note for being so prompt in scheduling my scans in pop it in the mail to her. Having been through this before, I know chocolate is a great motivator.

STRENGTH THROUGH STORY

In the meantime I rely on narrative medicine (which is actually a program Columbia University offers). In my case, though, it’s the story I choose to tell until I have evidence otherwise.
I tell myself these numbers are being driven up by a shrinking tumor that’s casting off dead proteins which are showing up in my blood counts. For proof, I point to the tender spots on my body, under my armpits, along my sides, up and down my arms where my lymph veins are heavy with dead cancer cells.
I remind myself about the doctor at the immunotherapy symposium who showed a slide of a liver scan of someone on an immunotherapy trial. Twelve weeks in to treatment, the liver had doubled in size making it look like the drugs weren’t working. Yet the patient said he felt healthy, good, energized. Sometimes healing looks like it’s getting worse before it gets better. That’s what gives our stories drama.
I tell myself I can actually feel the drugs working. If a bone could itch, that’s what it feels like. Itching is a sign of healing (at least that’s what my grandmother says. She’s 94, alive and kicking, so she must know a thing or two about it).
Despite having set a course for the future with an eye on clinical trials, I still want to believe these drugs are working and that I can coast, even if it’s for only a little while.

MAKING IT THROUGH THE DAY

Nonetheless, this is what I’ve been drafted into as a Breast Cancer Conscript. Numbers will dictate my life, but not my mind. I’ve put together a strategy for these occasions, one that life tested yesterday.
After the chocolate bars, I text a friend who has battled breast cancer three times. She is now cancer free. She knows what I’m going through. She also knows exactly what I need to hear: “It’s going to be OK.”

The second thing I do is email the clinical trials coordinator to update her. I explain that I’m really doing it to give myself a sense of control in a situation where I have none. She understands and writes back with the next steps I need to take.

Then I call my husband and my mother. They’re both my advocates, but they also are shaken by this kind of news, so I have to solidify myself first. It’s that whole oxygen mask falling from the ceiling cover your own mouth before moving on to others syndrome. I remind them both that we have a plan no matter what the outcome. When they hear that I’m upbeat, they relax a bit.

Then I email a cancer counselor who’s great for talking me in off the ledge or giving me ideas of what other patients in a similar position have done. With their permission, she often puts me in touch with them. I’ve made quite a few friends this way, several of whom were on my texting chain yesterday.

And this is where things started to fall apart. The battery charger for two laptops I have went dead, cutting off all email communication for the day. I was able to get an older, Windows XP computer up and running, despite being warned from my IT guys NOT to use it for trolling the Internet. This is an emergency though, so I hear nothing. Turns out, my counselor is on vacation but in a small working computer window, she gets back to me and we nail down a date.

The text to my friend who always tells me it’s OK goes astray, so I don’t get the thumbs up. Instead though, I get a cavalcade of texts from people who somehow intuitively know to check in with me. It’s a bit uncanny.  I tell them in Twitter-like responses about where I am in the cancer dance. Prayers start pouring in. There’s a brick under my foundation. I just might make it through the day.

My mother offers to take me to lunch where we pour over what we know, what we don’t know, worst case scenarios, next steps. It’s not all that bad and there’s a few times we actually laugh. I’ve made it halfway through the day.

Before my doctor signed off, he advised me to “keep doing what you’re doing.” So I make an effort to get to my running group, where I’m able to commune with several other woman battling their own affliction anathemas. On the way, I check back with my friend whose text was misdirected. She texts back that she can’t talk. She’s just leaving the dentist office. But she sends the obligatory “You’re going to be OK” and I smile just before I head out for the run. I’ve just about made it through the day.

The endorphins kick in about 10 minutes into a beautiful sunset which bleeds through the lacey, leafless tree silhouettes on the horizon  and even though I have to stop to walk a few times because I’m tired, I know I’ve made it through to another day.

 

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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