Focus

13227626_10153593182477286_8243213380518012620_oSometimes it’s wise to focus on nothing at all.  Because we all know that when we focus on something, anything, it evokes emotion.

My perspectives have changed somewhat in recent years. My field of vision has been more finely honed to reveal a level of clarity I might have never known was possible had it not been for a few unexpected challenges in recent years.

I take more pictures with my iPhone these days, in an effort to capture what I SEE.  That’s one thing I love about the iPhone…it’s always ready to point and shoot.  I notice things now that might have otherwise escaped my attention completely.   The burst of yellow wildflowers lining the endless mountain trails where I live.  The tall grass of mountain meadows blowing in the wind with patterns of such rippling rhythmic perfection. The explosion of color in my own garden at home.

Photos I take with my iPhone remind me why I like to focus on nothing at all.  Nothing but the HERE and NOW.   Focus is highly over-rated.  Field of vision is where it’s at.

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Letting Go

Last week I attended a luncheon hosted by author Leslie Johansen Nack who spoke about her newly published memoir ‘Fourteen’.

Having already downloaded her book to my Kindle, not only had I read it, but my mother and my husband had also read it. We all agree…it’s a gripping story. The title’s byline leads you to believe that ‘Fourteen’ is primarily a coming of age story, but I think that’s the least of it, quite honestly. Beginning well before she was a teenager, this is about the unfolding determination to find the wherewithal to conquer circumstances no young girl should have to face. Climaxing in 1975, aboard a sailboat with only her sisters and her bizarrely controlling and sexually menacing father aboard, this is a story about courage as well as survival as they navigate clear across the Pacific ocean, from San Diego to the French Polynesian Islands… and then back again. Whether or not you know anything at all about sailing, the journey of this family unfolds in a way that is meant for the big screen of a movie theater.

Although Leslie and I had become acquainted two years ago through an online class called ‘Write Your Memoir in Six Months’, we’d never met in person until last week. I know publishing wasn’t without an emotional toll, and I admire her all the more for her bravery to take it public. She’s been traveling around the country on a book tour, and I got the sense last week that although she is extremely appreciative of the solid reviews and favorable attention her book is getting, she feels uncomfortable speaking so openly about it in public.   Thus is the dilemma of writing memoir.

From the get go, I had no interest in publication for my own memoir. My interest to write had been purely to leave a documented explanation of family history, which was already complicated long before I was born. I wanted my children to understand the circumstances and complexities that shaped not just me, but in part how it also shaped them.

As I was approaching the home stretch I already knew I’d be ditching and re-writing most of it because that online class inadvertently taught me an invaluable lesson; writing to appease someone else changes the tenor of my narrative, which in turn caused me to lose my own voice. Now it’s my firm opinion that family therapists who are unable to stop analyzing every situation have no business teaching and mentoring writers who are navigating memoir.

I actually got quite close to finishing that shitty first draft of my memoir. But just a few weeks shy of that six-month finish, the reemergence of cancer abruptly brought a screeching halt to my memoir efforts and immediately redirected my priorities.

We all know that the seconds, minutes and hours of our lives don’t ever move in reverse, just like the sun never sets in the east. Statistics prove out that life is short when you’re living with stage IV cancer.

For me, the only way to move forward is to simply let go. Hanging on only to look back serves no purpose. Whatever the future holds, I’ve let go of what was, and I live with what is. Because the ‘here and now’ is my future.

Apple Pie and The Right to Die

For those of you who got an email alert late last night (as well as each time I post something new to my website), you might be wondering what happened to that post I’d written and titled ‘An Open Letter To Governor Jerry Brown’.

This will explain.

After learning on the evening news yesterday that the legislation for the ‘End of Life Option Act’ had finally arrived on the Governor’s desk for his approval or his veto, real HOPE got the best of me. I immediately sat at my computer and in a flurry of emotion I wrote the now deleted letter imploring him to SIGN IT INTO LAW.

Most Americans would be more familiar with this legislation as the ‘Death with Dignity Act’, which Brittany Maynard brought to the attention of our national media last year. At just 29 years old, Brittany had terminal brain cancer. She had to move from her home in California to our northern neighboring state of Oregon in order to end her life with dignity. Oregon voters passed this law back in 1994.

I believe with all my heart that every individual who is terminally ill should have the right to choose for themselves their own pathway toward their impending death. These words from our Declaration of Independence for these United States of America should ensure that right: We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

Death and dying are a part of life. Yet I know that there are many who remain steadfast in their opposition to this legislation. Remember, without life, there would be no death. So to those opposed, I ask you where is the humanity, the compassion, and the common decency in watching someone you love suffer a prolonged and painful death? Would you deny one of your terminally ill family members a peaceful death if they begged for a semblance of dignity? Would you instead prefer the anguish of watching them suffer in their final months or days, knowing that you’ve denied their own personal wishes? Are you aware that someone else’s impending death is not about YOU?

Further to those opposed to this legislation I’d say: Support it anyhow, and when your own time comes, feel free to suffer as much as you’d like. No one is stopping you from experiencing your own terminal illness with whatever pain and agony will come to you, all for your own loved ones to witness. Completely YOUR choice, and I would be the first to support whatever YOU choose to do in your own impending death. Because that choice should never be anyone’s but your own.

As soon as I’d posted my open letter to Governor Brown onto my website and Facebook page, I climbed into bed, but became amped up even more …and quickly realized I was actually uncomfortable with my decision to be so public about this particular issue.

So I reached in the dark for my iPhone and I decided to read one more time my words to Governor Brown. And in doing so, I became aware that some of you might interpret them to think my time on this earth is now within my sights. It’s not. It may be out there on the horizon somewhere, but I don’t see it, not yet. I’ve had to stop worrying about what the statistics on my own diagnosis suggest. And although I live in the ‘here and now’ as was recommended by my oncologist, I also have no illusions about my cancer; I’m fully aware of the magnitude of this very personal challenge.

And the reality? It matters not one iota what I think Governor Brown should do, because the legislation is already sitting on Governor Brown’s desk, passed finally by both the Assembly and the Senate after hours of in-depth discussion and testimony from many on all sides, including Brittany’s husband and Brittany’s mother, both of whom were at her side when she passed.

With the ease of iPhone app technology, I deleted the open letter just fifteen minutes after I’d posted it (to both my blog site and my personal Facebook page). Then I checked my blog stats… twelve visitors in those fifteen minutes, and one Facebook share…all honed in on that Open Letter to Governor Brown.

I felt better once it was deleted but remained awake all night, too edgy to sleep. I wondered if Jerry Brown was sleeping soundly, if he’d already made up his mind about this legislation, one way or the other.

As I sipped my coffee early this morning, it really began to bother me that I led you, my loyal followers, to a dead end post. So, here’s why I’m back on my laptop posting once again, a bit embarrassed if truth be told to have posted something that I truly did not feel was the correct expression of my feelings.

I’ve just carved up 30 apples I picked from our own backyard apple trees. About half of them, all perfect on the outside, were actually already rotten on the inside. And that seemed fitting as an analogy to sum up my feelings a bit more concisely:

Things aren’t always what they seem. NO ONE knows the pain and suffering of someone else battling a terminal illness. On the surface, they may appear to be managing well. But until you peel back those outer layers revealing quite the opposite to be true, you likely spend little or no time imagining your own death.

So today I am making an apple pie from those apples that were healthy inside AND out. And I will pray for Governor Brown to honor our Declaration of Independence by signing the End of Life Option Act into law. It would bring me personal peace of mind, and I suspect it might do the same for you.

If he vetoes it instead, when my finish line is within clear view don’t be surprised to receive a ‘change of address’ notice from me. I’ll be in beautiful Montana, or Oregon, or Vermont, or any other state where I can live out my final days in the manner of my choosing.

Thanks from the bottom of my heart for hearing me out.

My apple pie looks about as distressed as I feel waiting for Jerry Brown's decision. Hope the distress doesn't doom the palatability!

My apple pie looks about as distressed as I feel waiting for Jerry Brown’s decision!

#Lifer

Pain woke me up in the middle of the night just a few weeks ago. Pain in my right thumb to be exact. At the base, where it connects to my hand, specifically in the ligament. And it was bent at the top joint, as if I’d been pressing a stopwatch for my entire life. Frozen in place, I couldn’t UNbend it… without using my other hand. And when I did that, there was a pop.      Whoa.

So I purposely bent my thumb to test it…you know, just to see if I could bend it without any aide from my other hand.   Just to see if I could do it. And, thank heavens, I could.

But then I couldn’t straighten it out again. Whaaaattttt?

I focused harder. I willed myself to straighten my thumb. I took a deep breath and concentrated really hard, like I used to when I was a kid and thought there was legitimacy to the game of Ouiji.

It didn’t matter how hard I concentrated. I could not straighten my thumb.

I looked at the clock. 3:17 a.m. I briefly debated about waking up hubby since I was so oddly fascinated in a baffled sort of way. But I decided to simply use my other hand to straighten the damn thing out. Another pop. I searched for a cold spot on the pillowcase that would mask the throbbing pain, and then I debated about climbing out of bed to take some Advil. Instead I sighed deeply, prayed this was a bizarre dream that I wouldn’t remember by morning, and I eventually fell back to sleep.

Morning came. My thumb was frozen in a bent position once again. And my other fingers felt… well, they felt peculiar. On both hands, my fingers felt stiff and achy, like they could just as easily get into a locked position as well.

I glanced over at hubby. “Look at this!” I muttered with annoyance. He was barely awake and showed no interest. So I muttered a bit louder. “I cannot unbend my damn thumb.” He turned to glance at it. Then he moved closer to inspect it. Then he straightened it for me. It popped.  “Hmmm,” he said in sympathy.

It can be downright depressing when I dwell too long on my ‘new normal’. I try very hard not to, and for the most part, I’ve been successful and keeping those thoughts at bay. Since I last posted a health update here (three months ago), I’ve lost three women from my life. One was a personal and longtime friend to my mom, whose cancer had returned after a very long  hiatus, like fifteen or twenty years. She and I became close after my diagnosis last year. She reached out on multiple occasions to cheer me on in my own journey and to compare notes. Our paths paralleled for a bit throughout our chemo treatments, which were similar in their drug side effects. She didn’t know anyone else going through this battlefield, and I know it brought her some sense of comfort to be able to express her thoughts about it to me, someone who’d been a comrade of sorts.  But she lost her battle just a month or so ago.

The other two were women that I came to know through an online cancer support site (specific to my bizarre diagnosis). Of those two, the first one was a complete shock, as I’d had no idea how advanced her cancer had become in a very short time. She was one of the first to ‘welcome’ me to this online group, to reassure me that she was there to support me in any way she could. The second one was an even bigger shock, as she received her diagnosis just one month before I received mine. She began her treatments three weeks before I began mine…and it turned out that we had the EXACT same treatment plan. Same four drugs to start with, at the same intervals for the same duration in time, followed by the same amount of radiation over the same number of weeks. Her body did not handle the drugs well, and within weeks of completing her radiation, her cancer spread like wildfire to her brain. So they radiated her brain every day for a month. And then she died shortly after that.

Her death rattled me to my core, and put me in a funk for days. Having never met her in person, we’d shared quite a bit of ourselves with each other through social media. She lived in Kentucky. She was a horse owner, I’d been a horse owner. She was raising a teenage daughter, I’d raised a teenage daughter. She was spunky and encouraging. I was encouraging though not so spunky. She believed deeply in Jesus. I believe less deeply in God. She was a young forty-something and I used to be a young forty-something.

She was a lovely woman. She was a fighter.    And she was far too young to die.

Treating cancer (including early stage) with surgery, even mastectomy, and/or radiation and/or chemo does NOT guarantee a cancer-free future. Cancer has no age restrictions, no rhyme or reason to whom it victimizes. Recent studies have claimed it’s not lifestyle or diet related. It’s not even genetically related.  It’s simply science. And bad luck for those of us navigating this stealthy beast.

A woman named Holley Kitchen has posted a very emotionally moving video to Facebook in an effort to EDUCATE the general population of the world about those little pink ribbons, and it’s gone viral. It’s a concise explanation for those who are clueless (and that would be MOST people) about what ‘metastatic breast cancer’ really means. The net of it is: for those whose breast cancer has marched on to a new location from where it originated…they will never, ever, Ever, EVer, EVER, E V E R …be cured. The odds of an initial breast cancer becoming metastatic are 20-30%, according to the Metastatic Breast Cancer Network.  Metastatic Breast Cancer is an umbrella term for an entire RANGE of unique and incredibly complicated  breast cancer diagnoses. Mine happens to be a diagnosis that involves a gene mutation, which happens in only about 20% of patients.

Metastatic breast cancer is terminal (I keep my focus on the fact that LIFE is terminal). These people (and that would include me) will live for the rest of their lives, whatever time is left for them individually, always fighting the fight, and in need of lifelong medical care. Cancer might go into remission, but the emotional weight of unfathomable worry will never vacate.

Holley Kitchen has coined the term LIFER.  It’s a club for members only, and I wish like hell I weren’t a part of it.  I pray that none of you become a part of it, and if you are, my hope is that you are living life without looking back, and focusing on the joys and comforts that already surround you.

I typed into Google: I can’t straighten out my finger.   It was all over the internet. Trigger Finger. It’s an actual condition CALLED Trigger Finger. Jeez, if I’d known I’d be getting this, I’d have spent more time in recent years at the shooting range. I’m a good shot. Or I used to be when I was at the range. Dad taught me how to shoot when I was a kid. Once he’d figured out I was left eye dominant, he adjusted his instruction accordingly.   It actually saddens me to admit that this trigger finger is from my damn cancer drugs. Nothing to do with my firearm skill set.

So these cardio toxic drugs I get every three weeks, which I refer to as my sniper drugs, have affected my heart. I wrote about that three months ago, in my last post here, titled ‘Don’t Be Scared, Okay?’ I had to skip a round of treatment in hopes my heart muscle would rebound.

It didn’t. But the next follow-up echocardiogram showed that that my heart muscle didn’t get any worse either, so my oncologist resumed my treatments with the approval of my cardiologist. Like clockwork, I go in every 21 days and they hook up Portia with the IV. The nurses there have asked me on three different occasions to speak with other patients who were in need of chest ports. All three were scared and concerned about the surgical procedure, and curious about the placement and comfort. One was a young man in his twenties, another a woman in her seventies, and the last one was a woman in her fifties. I’m always happy to reassure others, but find it difficult when they ask how much longer before I get to have my Portia removed. It’s a question I’ve not yet found a comfortable answer for.

“I’m in it for the long haul,” I say. Their eyes widen, but I don’t offer much explanation aside from the fact that every cancer diagnosis and treatment plan is unique, and not to base the need for a chest port on the prognosis of their diagnosis. It’s solely for ease of access to their arteries while getting drug infusions.

Next week, I’ll get yet another echocardiogram, which will determine if my heart is continuing to hold steady or if the heart muscle has deteriorated further. IF it’s deteriorated further, again treatment will be suspended. Possibly a new treatment plan will be discussed, but I’m hoping not, because the treatment plan I’m on is THE best of the best for my specific and rather unusual diagnosis.

I’m experiencing excessive worry on occasion, but not for myself.   I’ve been so ridiculously busy with house guests, work and other activities that have kept me fairly well distracted, but every now and then, well, okay, DAILY, I am obsessed with tracking (via the use of an online GPS system) the exact location of a 72’ sailboat. It’s called the Sea Dragon, and at this very moment it is literally in the middle of (nowhere) the North Atlantic Ocean…as it sails from Bermuda to the Azore Islands, quite a ways off the coast of Portugal. Picture a single grain of sand floating in the midst of the wide wide wide open sea.

Why am I obsessing over that? Because my daughter is on board, crewing for an organization called Pangaea Explorations. They use the Sea Dragon to take teams of scientists all over the world to study issues that are ocean related.

This current group is studying the issues of plastics in the North Atlantic Trash Gyre (North Atlantic Garbage Patch), using a unique trawl built specifically for this expedition in an effort to determine the depth below the surface of the water where the trash has gotten caught within the ocean gyres. It’s a leading edge technology that’s literally unfolding right at this very moment, and I can only imagine my daughter’s excitement to be so intimately involved in this part of the research process.

But this mother has never experienced anxiety (okay, WORRY) quite like this before. While she’s out there trawling in the middle of… nowhere, I look at the sky and I pick out a star. I wonder if she’s able to see what I see. And I want to be able to text her to say : You see that star up there? Make a wish for me, okay? And then get on home so I can get my arms around you!

Trawling. The sniper drugs, before going in for the kill, trawl for a specific gene mutation which causes my cancer to proliferate. They’re called targeted drugs because they leave the good cells alone but trawl for the deadly mutant ninjas.  Boy, I hope my compromised heart can take it…I don’t want to lose my sniper drugs. I’ll happily deal with trigger finger so long as my sniper drugs can stay on the job.

Don’t Be Scared, Okay?

1508991_10152560487116439_7362674108437283273_nOkay, so it’s been a crummy few weeks. In a moment of lost composure, I posted a snippet of my frustration to Facebook. Mistake. Within 24 hours, I deleted it again.  And I’ve not updated here because I keep waiting for a brighter perspective to seep into my thinking about it all.

So here it is.

I completed radiation two weeks ago. (YAY!) Radiation didn’t leave much in the way of a calling card… skin burn and some cumulative fatigue to pile on top of the cumulative fatigue I’d already been gifted from chemo. That first batch of fatigue had just begun to recede when I began my daily treks to the city to get radiated.

After too many weeks, I finally allowed myself to count down the last remaining treatments. My second to last appointment happened to fall on Friday the thirteenth. And wouldn’t you know? I had a full schedule that day with not one, not two but three medical appointments all scheduled on Friday the thirteenth. Maybe that’s the nod medical folks need to mess with their patients. Hubby came along with me on this day. His lucky number was always thirteen.

First stop of the morning: oncology. I got my required blood draw, then hubby and I trotted down the hall to the suite where I get my drug infusions (the ones I get every three weeks). The nurse hooked up my Portia to the IV drip and two hours later I was once again ready to roll.

Second stop was radiology. Excited to finally see this particular finish line within reach, the technicians high-fived me as I entered the room. “AFTER THIS, JUST ONE MORE! WE’LL THROW A TICKER TAPE PARADE FOR YOU!”

My last appointment of the day: echocardiogram.

And here’s how it went down:

I report to the cardiac care center, two floors above radiology. After changing to a hospital gown, I’m seated on the end of the exam table. The technician (who’s technically a sonographer, and whose English is not great) begins by stating that she’s already seen my prior echo results. And now she wants my confirmation that those last results were prior to beginning chemo.

“No,” I tell her. “My last echo was done three months after beginning chemo.”

She raises her eyebrows. “Not before chemo?” she asks.

I tell her my FIRST echo was before chemo started. My second echo was three months after chemo began. I tell her that both those echo results were normal. And now this, my third echo, is three months after my second echo. Every three months, I tell her. I get them every three months.

She doesn’t seem terribly satisfied with my full explanation answer. Maybe it was more than she wanted to know. Maybe she felt it sounded a bit like a lecture. Oops. But I wanted to be sure she had her facts straight…you know, those facts about MY medical tests.

She now asks me if I know what my blood pressure is. I tell her no, I don’t know.

“You don’t know your blood pressure?” She’s starting to annoy me, and I think to myself: I’m in a cardiac facility and she’s not going to take my blood pressure? She’s just going to quiz me about it?

“Well, I know it’s normal because they just took it this morning before chemo,” I tell her.

“And you don’t know it?”

I nicely ask why she doesn’t just take it herself. I gesture to the equipment sitting behind her. And she seems miffed. And then she asks “What’s generally normal for you on your blood pressure?”

So I tell her “115 over 70 …somewhere around there.” And that’s what she types in on her computer monitor where I see my name blinking in the top data field. 115/70.       Alrighty then, moving on.

She wordlessly glues sensors all around my heart area. Each sensor is connected by long tangling lengths of thin cable to a high tech piece of equipment that is used to measure how well my heart pumps with each beat. Once I’m fully wired, I’m asked to lay back and to roll over so that I’m fully turned onto my left side, facing her and the high tech equipment. Then she wants me to scoot forward to the extreme edge of the table, even closer to her. With a quick release, a small section of table directly beneath the side I’m turned on drops away. This is how she accesses my heart area from beneath me, using a wand gadget that has gel on it, much like those used for ultrasound tests.

The computer screen is positioned very closely to my head and it’s angled so that it’s very easy for me to see. I refocus and watch silently as colorful imagery (that looks and moves just like the flames of a campfire) comes to life on the monitor.

She works the magic wand with her left hand, repositioning it as she goes to capture all angles of my heart, and with her right hand she uses the customized computer keyboard, deftly capturing snapshots and drawing etch-a-sketch type circles around those still shots that measure…well, I’m not sure what it measures specifically. All I know is she’s assessing my left ventricular ejection fraction (LVEF) which is the measurement of how much blood is being pumped out of the left ventricle of my heart (the main pumping chamber) with each contraction.  Pop quiz after this read.

About fifteen minutes in, I’m thinking I may as well nod off. But instead I re-focus on the monitor and notice the flames are suddenly still. No lines are being drawn around them. But now I see there are six small sub-windows on the monitor, displayed off to the side. They appear to be prior images already taken. I wonder why she’s reviewing what she’s already seen.

I subtly shift my eyes to her face, being careful not to move my body at all. But I’m caught red handed…looking at her. Awkward.

She has that universal look of alarm written all over her: the widened eyes, the speechless blank expression.  After two or three melodramatically very silent moments, it’s a bit of a stare down. So I finally break the ice.

“Everything okay?” I say it in a lighthearted tone…in jest, really.

Still deadpan silence. She suddenly swivels back to the computer monitor, clicks a few more times on what I assume are prior images, and then abruptly leaps up from her seat.

“Don’t be scared,” she blurts out. “I’m going to look at your last echo.”

My last echo? I barely heard that last part because she was already out in the hallway. And, she’s already seen my last echo…she told me so at the beginning.

GOD DAMMIT. Don’t be scared? Well, too late for that.

Now my heart is pounding as I struggle to stay calm. Minutes tick by. I want my hubby. I attempt to sit up but immediately feel the strain of all these sensors glued all over my chest. More minutes tick by. I look at the clock wondering how long she plans to be away…maybe I should just get off the table and drag the equipment behind me. HUBBY! HUBBY!

I decide instead to look more closely at the computer screen. All imagery is stopped, no flames flickering or colors flaring. I squint at the data fields. I see percentages. But I have no idea what those data fields are. The percentages are very low. Huh. Maybe those reflect the minimal effort my heart utilizes in order to function …which would mean my heart is a powerhouse, right?

Just as I’m pondering and panicking all at the same time, she reappears. And immediately she repeats “Don’t be scared.” But, she looks distressed. So I ask her again, is everything okay?

She shakes her head with the universal sign for no. “This is borderline,” she says.

“Borderline? Borderline normal?”

“No. But don’t be scared. I’m not a doctor. A doctor will tell you.”

I’m stupefied and now I’m speechless. But she continues. “I work twenty years. The patient is my one concern. Understand? You get dressed now, but don’t be scared. Doctor will call you. You don’t be scared, all right?”

Ya. Right

We drove home in Friday rush hour. Hubby and I spent a long 48 hours stewing over this. I berated myself for not demanding a cardiologist on the spot. I berated myself for not dragging all that equipment with me to get hubby from the waiting area. I berated myself for not telling her that her ONLY job was to DO HER JOB and to keep her opinions to herself.

I even berated myself for allowing my mind to wander, in the days just prior, to a happier and easier road ahead…one that would take cancer from my daily planner, and kick it to the monthly page instead.

Finally I reached my oncologist by calling her on Sunday night. And then on Monday, I called the hospital administrator who oversees the management of the cardiac care center where I had my echo. I felt he should hear about my experience there on that Friday the thirteenth.

I won’t bore you with the nitty gritty detail…other than to say that I am once again in an elite group.  I’m one of the five to ten percent of patients whose hearts are adversely affected by these cardio-toxic drugs… the only two drugs that are gene specific to my exact diagnosis and therefor the clear standard in any effort to prolong my life.

Shit.

So now my journey has taken a detour. I get to add a cardiologist to my medical team. He’s head of cardiology for the medical center, so I imagine I’ll be in another set of good hands. (I could field a baseball team with all the good sets of hands watching over me.) As it happens, he’s also the cardiologist who reviewed my echo results that very day.

Two days ago, I arrived for my appointment for a routine blood draw and then a visit with my assigned oncology nurse. After the routine exam and discussion of ‘how I’m doing’, she surprisingly suggested (almost as an afterthought) that maybe I should get a chest x-ray for a lingering cough I’ve had. With a compromised immune system now, every little cold becomes a big deal for me…so not only have I had this crazy annoying cough, I’ve also had a few other cold symptoms I’ve not been able to shake. But, it’s just a cold, granted a more annoying cold than I’d have ever gotten pre-cancer, but still…it’s a cold.

Hubby and I head down to x-ray. (Hubby has been a valued partner in this whole journey, let me tell you) The x-ray technician takes the first image. “Hmmm, there’s some haze there,” he says. “Turn to the side and I’ll take one more to be sure.”

He’s put a STAT on the x-ray results and tells me I may as well hang around in case there’s anything further my doctor may want me to do. He directs me to wait for results back upstairs in my oncologists office.

The receptionist there is surprised to see me return. I explain I’ve been told by x-ray to hang out for a bit. “Really?” she asks. “You don’t seem sick.”

“I know!” I tell her. “I’m actually feeling pretty good! Aside from this cough.”  And, then word comes.

Damn it. I have pneumonia.

And now that my oncologist has realized I’m still in her suite of offices, she asks to see me personally. I didn’t have a scheduled appointment with her.

Turns out she too has been fighting some sort of bug, and has lost her voice completely. “Well,” she whispers, “I do nothing but talk most of the day.”  I suppose that’s true. Hubby and I sit in the two chairs in front of her desk, and right away we both lean in closer in an effort to hear her better, as I try desperately not to cough.

She whispers that she’s had several conversations with the cardiologist (the one who interpreted my echo results from Friday the thirteenth). They’d discussed not only the results, but also the manner and level of professionalism (or lack of) in which the sonographer administered the echo test that day. And then with a smile she says my ears should have been burning with all the discussion about me. “Really?” I squeak trying to suppress a cough.

Then she wants to know if I’m related to the ‘celebrated family’ in San Francisco who shares our last name. I think that’s rather an odd question, especially after all this time she’s been my doctor, so I answer honestly. “Not directly, but I’m sure there’s a link generations back somewhere.”

Now she gets down to business and whispers her new game plan. It seems that my heart now takes precedence over my cancer, so she is suspending my infusion treatments for one round. She is ordering another echo three days before the next scheduled infusion round is due (towards end of April), to see if my heart muscle has rebounded. I’m told that often the heart will rebound on it’s own, given a break from these cardio toxic drugs. If it has rebounded, she will proceed with that late April infusion as scheduled, but using only one of the two drugs.

This doesn’t make me happy. It’s these two drugs working together that have been so groundbreaking in their ability to buy a patient more time.

“How will you choose which one to drop?” I asked her between coughs.

I know all too well that first; doctors aren’t God, and second; when it comes to cancer, there are no rules. She told me she wasn’t really certain which of the two drugs she’ll drop, but she suspects she’ll drop the newest of the two, the one approved most recently, in 2012. If all goes well down the road, she could add it back in.

So, hubby and I came home and I Googled that celebrated San Francisco family who shares our last name. And I learned that the patriarch, who passed away just a few years ago, was a huge philanthropist, highly admired. He liked to stay under the radar, but contributed in huge ways to many causes. He served on the boards of museums, aquariums and colleges, and quietly but joyously supported the world of sailing (one of his many passions) as well as The America’s Cup. Turns out, he also spent forty one years serving on the Board of Directors for the California Pacific Medical Center, the very place that is home to my team of good hands. No wonder they were all abuzz when my ears should have been burning. Wouldn’t you have loved to be a fly on that wall? Makes me smile just to think about it.

Three R’s

Screen Shot 2015-01-29 at 9.53.45 PMFor whatever strange reason, hearing that one singular word last week (remission!) was peculiarly hard for me to absorb.  Sure, the CT scan showed great results,  so logic would say I should just breathe in the good news, revel in it and joyfully celebrate.  This whole journey has been so peculiar from the outset.  It’s hard to emotionally stand down, take a step back and ease up.

After my oncologist happily declared my remission, we went on to discuss next steps in the treatment plan. Steps which are above and beyond the ongoing schedule of infusions that I continue to receive every three weeks.  We discussed other tools in the weapon arsenal, one of which is radiation. Given the outstanding results of my CT scan, my oncologist felt the discussion should continue with a specialist in radiation oncology.  So she set me up for a consultation appointment with the radiation oncologist who is also a member of the ‘tumor board’…a weekly gathering of highly skilled physicians who provide a forum for discussing complex cases that require an integrated and multi-disciplinary approach to treatment.

Hubby and I met with him two days ago. Turns out, he’s very familiar with my case (and has been following it for quite some time) because it was thoroughly reviewed and discussed with the tumor board months ago.  And given my history with cancer, which my entire medical team thought we’d licked eleven years ago, he pointed out some unknowns.

First, there’s considerable question (and no way of knowing) whether or not my cancer is an actual recurrence from eleven years ago.  The possibility exists that there might have been ‘rogue cells’ left behind which have since migrated to a new location and thrown out a new twist in the form of a gene mutation…making this a much more aggressive cancer now.  The migration scenario isn’t impossible, but it’s also not terribly likely given the scope of multiple surgeries I endured all those years ago. However, the fact still remains: there is no way of knowing for sure.

Second, although the cancer was found in the axillary tissue adjacent to and tucked up around a swollen lymph node, the swollen node proper did not have cancer cells present. So, one might presume that the cancer had traveled no further, although the pathologist reported that there was ‘likely lymphatic invasion’ based on his findings that the adjoining tissue had cancer ‘percolating throughout’.  Which leaves the possibility that the cancer could have already attacked nodes which would no longer be detectable on the scans.  And we already know that scans don’t catch all cancer, especially microscopic in nature.  I found that out eleven years ago at the very beginning of my cancer journey.

As hubby and I listened to what is UNKNOWN about the particulars of my case, I felt oddly assured.  The mighty fight is going to continue, even after six hard rounds of chemotherapy and a host of bizarre and annoying side effects.  Even with an excellent CT scan result,  that one singular R word, remission, rings awkwardly in my ears.  I would love to be convinced about remission with absolute certainty, but the fact of the matter is…I feel no certainty about this.  Cancer is a nasty beast.

Oh how I would love to grab that word ‘remission’, knowing confidently that it has been firmly affixed to my medical records.  But there’s an unease that I can’t deny.  A discomfort, an intuition…and it’s screaming at me:  ‘Tread lightly! Eyes wide open! Insidious enemy lurking! Don’t let your guard down!‘  

Which brings me to the second R word.  Radiation.

I’m going for twenty five rounds of it, five days a week for five straight weeks.  Based on the brazen return of this enemy, and with the use of a linear accelerator (doesn’t that just sound so freakin’ awesome?!) we’re going to blast the hell out of the whole damn lymph node playground.  There will be no percolating allowed.

Remission and Radiation.         Radiation and Remission.

Those two R’s go hand-in-hand, clearly.  The third R?

RELIEF.

One Singular Word.

Never in my wildest dreams did I expect the sound of just one singular word to be so pivotal to my sense of well being.  It’s been a wild ride, these last six months.  A left-field diagnosis that came with a nasty gene mutation I’d never heard of (gene mutation? Who the hell expects THAT to be on their medical radar?) It was so surreal to me, all I could think of was the same three words, over and over again:  I have WHAT?  (picture a deer staring into the headlights)    What?  (still a deer staring into the headlights)  I have WHAT?   (you’ve got the visual now, right?)

Because time was of the essence, I was immediately catapulted to a journey that took me from what I thought was a ‘more than acceptable’ and maybe even an ‘above average’ life of really great (albeit aging) health and plunked me down hard forcing me to face a future that statistically says my life is going to be substantially abbreviated… thanks to this mutant ninja gene mutation that moves at a very stealthy clip. In short: prognosis statistically is grim, and I know this because the internet tells me so.  The oncologist didn’t say it that way.  She said This is a disease that is best managed in the here and now.  Cleverly crafted phrasing that drove the message home.

BUT, statistics were garnered from studies of patients that didn’t include me, and from studies that weren’t from the here and now, but from the then, a.k.a. yesterday.  Diagnosed in the here and now, medical technology has advanced since yesterday, and miraculously produced some new extremely promising drugs.  They can’t CURE me, but they can sure tip the scales in my favor…maybe even buy me LOTS more time.  I’ll be on these drugs for the long haul, every three weeks by IV infusion.  They go after the gene itself, direct to the crime scene.  Bada bim, bada boom.

The round of chemo drugs I just finished go everywhere…they invade the whole damned community, killing everything they can in order to sleuth out the bad guys.  Well, they got my hair, and they are STILL killing my finger nails, and even the nerves in the bottom of my feet.  But in the grand scheme of things?  Who cares… it’s just hair.  Hair and finger nails will grow back eventually.  And, although incredibly annoying …well, all these side effects from nasty chemo are incredibly annoying, even numb feet are no big deal. No, really.  I can’t feel my toes or the balls of my feet, but hey; no biggie.  They’re just feet.  I can wobble around with the best of ’em.  There’s shoes for that problem, right?  Well, I’ll have to get back to you on that one.  But guaranteed, I’ll be back out there whacking golf balls if I have to use walking stilts to get around the course.  Mark my words!

The singular word that changed my sense of well being?  Nope, it wasn’t CANCER…that nasty six letter word only served to bring out my own stealth ninja instinct to kick cancer’s butt.  Cancer will NEVER define me.  It tried once before, eleven years ago when I endured multiple surgeries, each one with additional bad news until I finally forfeited body parts. I don’t need that stuff anyhow.  It’s just body parts, not major organs.  Unneeded body parts?  I’ll take my future, thank you.

So, then… you’re probably wondering what IS that singular word that’s become so pivotal to my sense of well being.  I just heard it today, actually.  It was joyously pronounced by my oncologist.  REMISSION.     REMISSION.  I am IN remission.  I am in FULL REMISSION.

As hubby and I were getting back into our car, preparing to head home to Marin County, I  had to ask.  Did she say I was in remission? Did she use that exact word?  Hubby happily confirmed what I already knew she’d said, exactly. She said I was IN REMISSION. She was smiling broadly when she said it and she’s not a smiler, normally.  She told me I’d ‘responded to the chemo extremely well.’

Actually, I simply showed up when scheduled, my Portia (to the newbies here, Portia is my chest port…she’s implanted, I HAD to give her a name) did her job channeling those creepy drugs from the IV drip bags directly into my heart and onward throughout the rest of my body.  I ‘responded’ the only way I know how to respond…mentally prepared and ready for the fight.  Throughout my lifetime, that example has been set for me time and time again. My peeps don’t mess around.

REMISSION.  Peculiarly hard to wrap my brain around that word…just like it’s been so hard to wrap my brain around this stinkin’ gene mutation that they tell me I have. I’ll always have it …lurking….and because of that, I will continue to go forward with those new breakthrough drugs, getting them via IV drip every three weeks as planned.  Portia and I will be a team for the long haul, or at least the foreseeable future.  But today? The shadow of ‘a fight to the death’ has been temporarily lifted.  My silver linings are glowing.  They’re almost blinding, in fact.   Damn.  It feels so good.

REMISSION.  Now THAT’S a great word.  A word to celebrate, to worship, to pray to God for.  I hope it stays glued to my medical chart for years to come.  Because I want to drive nails into that word, to ensure it NEVER leaves my medical chart.

CANCER, you will never define me.  Even if you prove those damned medical statistics out, you will NEVER define who I am.  My life, my ‘new normal’ will march onward because I keep my eyes on the horizon, I don’t look down, and I don’t give a crap what you’ve got up your sleeve.  I have an ARSENAL stockpiled; I’ve been blessed with a medical team that is truly outstanding, not to mention a host of friends and family who surround me with unending support, nurturing, and unequivocal love. I’ve got a hubby who continues to love me through every single moment, whether it be high or low or tearful or not. He is there with me every step of the way.

And finally, I’ve got the instinct of a ninja SURVIVOR.  I’ve been trained by the best of the best….I’m tellin’ ya.  Don’t be messing with me.  I GOT THIS.       And, now…if you’ll excuse me, I’ve got a life to get back to.

Mount Burdell