Wednesday, January 29, 2014

I Am The Patient, I Need to Be Heard (or "You're Fired")

A fiesty 15-year old has posted a video on YouTube expressing her frustration during her multi-day stay at a hospital, unable to sleep due to repeated visits by multiple doctors, and being ignored by those doctors as they discussed her case with her parents.  In the week it was first posted, 
I am the patient, I need to be heard, was viewed almost 30,000 times.  Her video received such attention that it has inspired blogs (like mine), an article in Forbes, and multiple shares across multiple multimedia platforms.


Ms. Gleason has spoken for every patient every where.

"I am the patient, I need to be heard,"is the mantra, battle cry, prayer of anyone who has been forced to enter a doctor's office or hospital over and over again. Listen to me. I am right here. This is my life. My body. My future. I get to decide what you do to me, put into me, perform on me, especially if it will lead to a substantially decreased quality of life. I am not here to bulk up your survival statistics, you taking credit for keeping patients alive just to keep patients alive. I come to you because I want to live, and I want to live well. I deserve to be heard when I tell you that the chemo numbs my hands and feet so severely that I cannot walk. I deserve to be listened to when I say the steroids push me into a mania that impedes my life. And I deserve modified treatments based on my very real concerns.

Do you get the idea that I've been feeling this frustration too? I have. From the oncologist who would not sign off on a double mastectomy because the cancer had already spread and, really, the breasts (and their continued ability to grow more cancer) were not her primary concern. To the nurse practitioner in that oncology practice who blithely repeats the symptoms of cancer metastases, continuously reminding me of my impending death, so that I am encouraged to obsess on even the smallest headache as yet another proof of cancer gone even more bad. And to that same nurse oncologist who dismissively told me to go ahead and take that glutamine while on blood thinners, not researching glutamine's blood-thinning properties. The resultant bloody noses were only a sidelight of my already cancer-riddled fears, and her unwillingness to work with me in finding appropriate neuropathy-reducing supplements only added frustation to me already-heightened fears.

Thankfully, my oncologist finally did listen to me regarding my concerns about a mastectomy, and I had the procedure two years ago.  She understood that my continuing fear of a different primary cancer in my breast trumped the current practice of stage 4, no surgery. My mental health was important to her in my fight for health, and I respect her acknowledging that.

But to the medical practitioners who don't listen to my needs, who treat me as just another case or dismiss me as a simple note in a patient intake file, I have a new phrase for you. "You're fired."

Yeah. That's right. That’s you, nurse practitioner, whom I have lovingly nicknamed Hitler in Heels for her penchant of rigidly following the rules, no matter how much my case may demand a flexible approach. I'm talking about that time I came to you with steroid-induced acne literally covering my entire forehead, and you insisted I see a dermatologist, scheduling  me two weeks out for that appointment, when the simple solution was a prescription of anti-acne cream--props to my Internist for calling that prescription in to the pharmacy instead. I don't need to fight with you to get the kind of care I deserve and need. I don't need to be pushed into yet another medical appointment when I am already exhausted by extensive chemo, and you could easily have written the prescription instead. I don't need to be constantly reminded of the ways I could die. I've looked the symptoms of brain metastases up.  We went over the sypmtoms already. I know the gig.

So Hitler in Heels, you are fired. Done. Kaput.  I will find another medical professional who will listen to me, respect my concerns, approach me with flexibility, and pay attention to my desire to live comfortably, rather than just to live.  You. Are. Fired. Got it?

Because, as feisty Ms. Morgan Gleason, said it "I am the patient, I need to be heard." And, frankly, I am the one signing your paycheck. My body pays your bills. So beat it, woman. Take your pink slip, and walk out the door.

And to every medical practitioner out there, listen up. Because your patients are talking. And we need to be heard.

Also published on CureToday

Wednesday, January 22, 2014


Cancer patients talk about the darnedst things. Today's discussion was about feeling like a prisoner of cancer. I had never thought of it that way, but as soon as my fellow metastatic breast cancer compadre said it, I thought, that's so true. We are prisoners of cancer.  And not the nice kind of prisoners.  We're not in a pleasant sitcom, residing in Stalag 13, goodies hidden in a tunnel, fun jokes among friends, a clueless Colonel Klink wandering in here and there for the punch line.  Metastatic cancer patients are prisoners in a more orange jump suit kind of way. We are told when and where to show up, poked and prodded, given little to no choice on treatments and options. The doctors are our wardens, the nurses the guards.  And because talented oncologists can be hard to find, we pray that the warden and the guards are kind. Because in the end, we all want to live, and it is surprising what people will put up with in the hopes of commuting that life sentence.

I don't mean to be depressing, I'm just telling it like it is.  For the most part, myself and my fellow metastatic cancer friends try to ignore prison walls, do what we can to run freely in the fields, and try our best to deal with those moments where the cell doors come slamming down.  On those bad days, when one of us is lying yet again on an exam table, a tube being snaked into places tubes should never be snaked, we do our best to see the humor, the patience, the good side of the situation.  "These people are here to help me," I tell myself.  "Find the joke, and try to laugh about this," I murmur inside my head.  But secretly, I am resentful. I do not want to be here. If I never saw my oncologist or a bone scan technician again, that would be my happiest day.  I'd even bring flowers to my last visit to thank them.  And then I'd never speak to them again.

I want a life where I can maybe see a doctor about that pesky twinge, it doesn't hurt that bad, really.  I want to drift off to sleep at night, knowing that I'll wake up a little old-age achy, but happy knowing I'll just be going about a regular day. I want to sock money away for retirement thinking I might actually use it, rather than planning on how best to hand it down to my loved ones. I want to be able to imagine going on a date again without having to fathom how I should explain the cancer in my life.  I want to live a life in ignorance of my own death.

When I was receiving my first treatment of Kadcyla when the cancer recently came back, I told the nurses that if I die of cancer, my final words will be, "I am so fucking pissed."   I then turned to my lovely friend Lisa, who had accompanied me, and asked her to record those very words as they came out of my dying mouth. Her reply was to reassure me she would not only record them, but would embroider them on a shirt for me to wear in my coffin. I love friends like Lisa.  Since then, I've instructed my nephew that if I do die of cancer, I want a placard saying "I am so fucking pissed" to be placed next to my urn, and that funeral attendees should be given name tags saying, "We're so fucking pissed too."  I went on to tell him that if I die of anything else besides cancer, anything, the placard should say, "I am so relieved."  And that is my goal, to die of anything besides cancer.

As my oncologist remarked, when I told her this, "You should aim for more positive goals."  But frankly, when you're a prisoner of cancer, life's goals become far simpler yet harder to attain. Live long enough to see my nephew get married. Go on that trip to Iceland.  Any goal, while living with metastatic cancer, can be instantly wiped away by an unannounced flare of the disease or a side effect.

So all I gotta say, if I'm going to live in prison, I get to choose the goals I hope to attain.  I don't give a damn what my oncologist, or anyone else thinks of those goals.  When you're living in prison, sometimes it's best to dig a tunnel and store the goodies down below. And make sure you pull a good one over Colonel Klink as often as you can.  Because, as I told my nephew, when he asked why I had purchased the latest version of the Barnes & Noble Nook, "I have cancer, damnit, and I can do anything I fucking well please."  Now hand me my orange jump suit. I've got a tunnel to dig.