May 13, 2016

There is a special kit that is used each time a nurse accesses my port for a lab draw.  It’s a new kit each time; it isn’t reusable.

The nurse pulls the prepackaged-in-plastic kit out of the drawer.  She opens it.  Inside are gloves for her to put on.  A mask for her.  A mask for me.  A disinfectant sponge attached to a plastic handle… kind of a smaller version of those sponges you can use to wash dishes, where you can preload the liquid soap in the handle and it comes out as you apply pressure to the sponge.  She cleans my port site with the sponge and tosses it in the trash.  There’s a special bent needle that goes into my port with a plastic tube attached.

“Count to three and take a deep breath.”

She sticks the needle into my port on the three.  She twists the lid off a vial of heparin… it’s a blood thinner that helps keep my port from ever getting clogged… lid goes in the trash bin, then she twists the vial of heparin onto the plastic tube that is connected to my port with the needle. She pushes the heparin.  Tosses the vial in the biohazard bin.  Second vial of heparin, tosses in the bin.  Wipes the connector with a cotton swab.  Cotton swab in the bin. Then she connects and draws the first vial of blood.  This first vial always gets tossed in the biohazard bin because they can’t use the blood that is diluted with heparin for the labs. Then she draws however many vials she needs for the labs… sometimes it’s 4, sometimes 6, sometimes 8 depending on what tests the doctor has asked for on a particular day.

After the appropriate amount of blood is drawn, a cotton swab is used to wipe the blood off the tube.  I get two more vials of heparin.  Toss in the bin.  Toss in the bin.  One vial of saline to flush everything.  Toss in the bin.

“Deep breath in.”

She pulls the needle out of my port.  Toss in the bin. Bandaid on the port site to stop the bleeding.  Paper in the trash.  My mask comes off, in the trash.  Her mask comes off, in the trash.  Her gloves come off, in the trash.  All the leftover packaging from the port kit gathered, in the trash. Checks name and birthdate, applies sticky labels to all tubes of blood.  Extra stickies and accompanying paperwork in the trash.

This is one blood draw.  This happens anywhere from once a month to once a week and comes nowhere near in comparison to all the waste that is associated with real treatment.  The plastic.  The paper.  The hundreds of pills when they discontinue my use of a medication that the pharmacy has already filled that they are forbidden by law to reuse, even if a bottle has been unopened.  Pills that cost up to thousands of dollars per pill.

I used to be amazed at the amount of stuff used per person per doctor visit.  “How great our value for human life is,” I would think, “that we go to these great lengths to see how people are doing.  To provide treatment and life as long as possible for all of these people.”

But I have reached a point where it is unfathomable to me that so much stuff gets wasted on just me, just to prolong my little life, when my life itself has come to be one big long blur of waste.

When I was first diagnosed with cancer, I swore that my life would not become my disease.  I was determined to work; to contribute; to remain dedicated to making the world a better place through art, teaching, kindness, shared human experiences.  I had no idea how long disease would last. How tired I would become.  How much pain I would be in every day.  And now it’s reached a point where all of this waste is being spent on me so that I can… uh… lie on the couch every day and watch movies? Check Facebook a hundred times an hour? Take pills upon pills just so that I can inhale comfortably and sleep the 15 hours a day I need for making sure I have enough energy to feed myself and get to the bathroom?  Is that really worth it?

It has been 15 months since I have been on any sort of treatment that has worked.

I had scans last month that showed considerable growth.  My cancer is spreading wherever it wants.  Dr. R took me off the Xeloda (the medication I was on at the time) and offered me more IV chemo.  To which I calmly said, “No thank you.”

And we had the talk.

“Over time you will experience more and more pain,” she said.  “You will be more and more tired. Eventually your liver will stop working.  You will start to turn yellow.  And we will manage your pain as best we can until the end.”

We aren’t just waiting for it… although a lot of the time, that is what it feels like I am doing.  Here’s the couple three things we are doing:

The BMN 673 (the trial I was released from that was working so well… actually, the last treatment I had that worked at all) has been purchased by a different pharmaceutical company, so we are submitting to get that prescription back. It’s a lot of paperwork and a lot of hoops to jump through, so even if they do grant use, it will take a very long time to get the drug to me.

There are a couple of trials at MD Anderson that I am eligible for with the drug that cured Jimmy Carter.  I am trying to get an appointment set up down there.  But if that pans out and I do get into a trial, I will have to relocate to Houston… or within driving distance to Houston… and my health is so unpredictable, I’m not sure how I would do relocating without a support system.  And my dogs go where I go.  It will take some figuring out.

And there is one more hormone blocker that I have not been on.  I had a more in-depth genetic test done a few months ago (Foundation 1 is the name of said testing) and it came back showing that this specific drug called everolimus should effectively treat my mutation.  Hormone blockers have never worked for me in the past, so I am skeptical.  But, if my insurance company approves it, the specialty pharmacy should ship my first round sometime in the next couple of weeks.

But, y’all…. I’m so effing tired.  All. The. Time.

I remember once back in 2012… I was working three jobs to pay off medical bills and was putting in over 80 hours of work a week.  I had a surgery scheduled to remove more breast tissue because Dr. S didn’t get clear margins in an earlier surgery.  It meant I got a week off of work.  And I was so grateful that they were putting me under anesthesia so that I could rest because I was so effing tired.  I just wanted to sleep, even if that sleep was induced by heavy drugs.

Ecclesiastes 9:5 says, “For the living know that they will die; but the dead know nothing… their love, their hatred, and their envy have now perished.”

And that just sounds so peaceful.

I’ve spent so much energy coming to terms with everything… letting go of dreams and goals, dealing with all the changes to my body, accepting that I can’t work and that I’ll never have a family of my own, being unable to write because my brain doesn’t work the same due to all the drugs and because I’m not in any sort of environment where I am sparked creatively… that I don’t really know how to deal with living anymore.  The days of inactivity and the amount of physical pain I struggle with… spending 90% of my time alone on my couch… it has just begun to feel like all that is left of my life is simply a big pile of waste.

End cancer: the sequel, chapter 9.

PS.  My friends MK & JW took me to Amsterdam about a month ago, mainly to see the Anne Frank house.  (The Diary of Anne Frank has been one of the most influential books I have ever read.  My mom, Anne Frank and Jesus have shaped nearly everything I believe about what it means to be a good human being.). One of my favorite parts of the book is when Anne talks about being in the attic of the secret annex where she and Peter could see light coming in the the topmost window that was not covered with blackout curtains.  You can see this window when you are visiting the house.  There is a mirror set up in the attic so that when you are standing in what was Peter’s room, you can look up and see the reflection of the window where they would look at the daylight or the night sky.  And a quote from that section of the book is painted on the wall.  I stood and stared out Anne and Peter’s window for quite possibly an hour, dwelling in the huge hope that came through such a tiny space.  And as I was standing there, a young boy of about 8 and his mother passed through the room.  The boy looked up into the attic space and observed, “Oh.  That’s nice.”  “Nice?” His mother asked.  “I think it’s grim.”  “No,” the boy corrected.  “To see the light.  That’s nice.”


One Response to “Waste”

  1. I’m so sorry you’re feeling the oppression of this wastefulness, querida. It may seem like cancer has taken over your life, but it still does not define you. “The effect you have on others is the most valuable currency there is.” (quoting Jim Carrey a lot lately, he’s a surprisingly wise soul) …your imprint on the people in your life has been vast and deep and lasting. My memories of our adventures together fill my heart.

    I wasn’t sure when to tell you this, but I’ve been collecting and keeping track of your blog posts. Through the Taos Writers Conference, I met a woman in publishing who has an affinity for memoirs… and while I can’t promise that anything will come of it, I hope to help tell your story. It’s a story that deserves telling and remembering and celebrating. Even the moments where you are feeling desolate – Especially those moments – because they are the darkest part of cancer that is almost always ignored or glossed over.

    Moral of this comment: I love you. You are loved and cherished, always.


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