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.

5 thoughts on “Don’t Be Scared, Okay?

  1. Mollie Gmail

    Damn! We can’t believe that you have yet another challenge (or two) in front of you. Continue to stay strong in your philosophical attitude, and kick that pneumonia in the derrière!

    Sending you lots of love,

    Mollie and Dennis Sent from my iPhone

    >

  2. Mollie Gmail

    P.S. Have you thought of talking to someone at NIH? A good friend of mine who has lymphoma has been impressed & pleased with their involvement with her particular case. Just a thought…

    Mollie Collins Sent from my iPhone

    >

  3. Dear friend, you write so amazingly, I feel the fear but also the humour and that is a rare gift indeed. I don’t want to sound trite, but please know I am praying for you and thinking of you and hope that your next update brings good news from your echo and ongoing treatment. God bless you always…and sending hugs too ❤ 🙂

  4. You are a true writer – a being who can tell a story with the right words, at the right time, despite the fact that the story is about YOU. I felt like I was on that Echo table with you. And I wanted to slap the technologist (even though I’m not a violent or aggressive person). What an ordeal. One more challenge (or two more, with the pneumonia), but I have no doubt you are up to the task! xo

  5. […] 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 […]

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