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.”
October 14, 2015
All women classified as having great potential who died too young.
As I have begun my 35th year knowing that it could be my last, I’m starting to feel like I’ve let myself off the hook about fulfilling my own potential.
The Lynparza that we fought so hard for (thank you all again for your incredible efforts) proved ineffective. It did not work the same way that my trial PARP Inhibitor worked. Early September scans showed considerable growth in my liver. And possible growth in my lungs. (The lung scans were a little inconclusive, possibly due to the onset of an upper respiratory infection.)
A couple of days after I got the bad news, Dr. H had me meet with Dr. R, a breast cancer specialist who has just joined the practice at the Hope clinic. Thankfully, Dr. R did not place more chemo at the top of her list of treatment options. Instead, she wondered why hormone therapy hadn’t been exhausted, given that my cancer is estrogen positive.
I did about two weeks’ worth of hormone therapy at the beginning of 2014, right after my hysterectomy. But it was done in conjunction with a trial drug, LEE011. (MonaLeesa was the name of that trial.) The trial drug made me so sick that I resigned from my job and moved back to Tennessee to be close to my family because I believed I was dying within a matter of weeks. I lost nearly 30 lbs. I very quickly stopped taking all medication and braced myself for the end.
Dr R pointed out that the trial drug proved so harsh that no one took the time to examine whether or not the estrogen blocker it was paired with might have done any good.
She explained that even with the removal of my lady parts, I still have a lot of residual estrogen in my body. Estrogen is produced by fat tissue, not just ovaries. And estrone is a type of estrogen that is present even after menopause.
So, she has started me on an estrogen blocker called Faslodex. This treatment consists of two injections each month. Except for the first month of treatment (which happens to be this month for me) in which the dose is boosted. As a means to jump-start the treatment, 6 injections are given over the course of 4 weeks. Plus my monthly Xgeva shot. Seven injections total. Happy Birthday to me.
(Don’t get me wrong, I will gladly take a couple of monthly shots over more chemo. I’ve said it before and I’ll say it again. I believe I would rather die than ever do more chemo.)
The needles are seriously HUGE. It takes 3-5 minutes (depending on how fast the nurse pushes the plunger) per injection. The Faslodex is a really thick substance. It burns like hell going in. And this past week, during the second set of injections, I nearly blacked out from queasiness during the shot. (From now on they will be given whilst I am lying down.)
Side effects so far include: bone pain, light but manageable nausea, lack of appetite and silver dollar-sized bruises on my hiney at the injection sites. Oh, and mood swings. Super fun.
It’s all kind of like having a very bad period. (Ironic?) Crampy legs/abdomen and a strong desire to sit on my couch with a heating pad eating only ice cream and crying over Disney movies. (This makes all of you want to come hang out with me, huh?)
Once my white blood cell counts and hemoglobin rebound from being off of the Lynparza, Dr. R will add an oral medication called Ibrance to my regimen. Dr. R and Dr. H say they are remaining very hopeful.
But as I approach year 5 of a statistical 3-5 year survival rate, I’m struggling to hang on to hope that the docs can delay the inevitable for much longer. And admittedly, the mood swings provide me with some days where I welcome the inevitable.
I’m not quite sure where I lost my indomitable spirit. I seem to find it when I’m out adventuring with my favorite people. But I quickly misplace it the minute I’m home.
Last week as I was sitting in an office waiting room, a nice older gentleman offered up some small talk to pass the time. Asking where I was from and why I was there by myself. When I answered, “It’s easier to come by myself,” he seemed unsatisfied and maybe confused by the fact that I look much younger than I actually am. “Where are your parents?” In a bumbling effort to ease his discomfort over the fear that I had unloving parents, I expanded with, “Oh… well, I live by myself.” He replied, “How sad for you.” And after years of thriving on my independence and reveling in the freedom of which bachelorette-hood allows me to come and go as I please, I suddenly felt an unswallowable lump in my throat and hot tears burning in my eyes. I overwhelmingly felt unloveable and purposeless.
I’m blaming it on the hormones.
But I do wonder how many people look at where my life is currently and where I once planned to be and think, “How sad for her.”
Once upon a time, when I lived with a boy I called my husband, we planned to have our first child the year I turned 35. We would have our perfect home in the woods where we could hike every day and gaze at the stars every night. We would sustain our livelihood through writing music and plays and we would travel wherever we wanted. And we would have 5 big dogs.
A fairytale, sure. But it was our dream. And we could attain it. For a good stretch of time, it was just within the reach of our grasp.
I’ve let go of so many dreams like this as a necessary means to keep a healthy mindset. I don’t let myself dwell in the sadness of being unable to have a child. I focus on how much better it is not to leave a motherless child behind. I don’t allow myself to have romance with any interested parties as I feel like it is cruel to drag someone into The Cancer Games arena and potentially wound them in an irreparable way. It is better to be on my own. Easier. No complications. No heartache. I don’t push myself to write because the things I have to say are so wrapped up in pain and loss. The creation of a new piece requires too much focus on all of the hurt and then I lose moments of joy and contentedness. I’ve stopped auditioning or submitting work partially because the processes are unwanted additional stressors, but mainly because I don’t know if I’ll be here long enough to see a contract through to the end. And since I’m long past grappling with my own mortality, most days feel like just waiting for the inevitable.
How do I push myself to keep fulfilling my potential when I’ve already reached the point of acceptance of the end of days?
End cancer: the sequel, chapter 8.
PS. In addition to being the start of this new treatment, September was Treat Yourself Birthday 2015 (the phrase should be sung a la Tom & Donna from Parks & Rec… it’s fun!) Some of my most favorite people on the planet treated me to a most magical birthday celebration. It was filled with music, friends, wizards, dolphins, parades, bonfires, cake, food & wine, stilt walking, Hungarian moonshine, all things Disney, beach time, pool time, puppies and a newly acquired fixer-upper project to help me achieve a couple of bucket list traveling adventures. Pictures below. (Thank you CE, HG, SZ, BR, TC and SKA for one of the most memorable birthdays of all time!)
Huckleberry Moosh & Finnegan Meeko:
Rhythm & Roots:
August 24, 2015
I used to be Gwen F***ing Edwards.
Nothing I couldn’t accomplish with hard work and determination.
My friend SKA once told me that if there were ever some sort of apocalyptic scenario in which civilization needed to be rebuilt, he would choose me to start said civilization with because he believed I could do anything. Not only could I do anything, but I could do it with joy in my heart and a joke on my tongue.
I had big dreams. I would seek them, conquer them and then dream bigger.
I look in the mirror today and I see no trace of that woman.
Everything is different.
The goals were:
Write a Pulitzer Prize winning play.
Adopt as many children that needed good homes as I could support.
Hike the AT and the PCT.
Sing on the Grand ‘Ol Opry.
Build a home in the woods with a boy who loved me so much he wanted to spend his whole life with me.
The goals have become:
Write down a handful of family antecdotes so my nieces can remember me.
Hold the babies my beloved friends and family are having while I’m strong enough.
Get out of bed. Take a walk.
Sing silly songs with my nieces.
Pass comfortably in my own home, embracing that it is better to leave while no one is in love with me and left with the burden of heartache.
These lowered self expectations aren’t the only differences.
My body is different. My once soft, weighted breasts are now floating, unmoving mounds that I seem to accept less and less every day, feeling like these are just two more reasons why I find myself partnerless. My once flat tummy is plagued with a post-menopausal bump. A bump that I find beautiful on women who have one as a result of giving birth to their children, but on me only serves as a reminder that my womb was prematurely ripped from my body. (And no amount of yoga or clean eating reduces the size of cursed bump, by the way.) My once gorgeous, long, blonde hair that turned heads at bars has fallen out three times now. I see girls jogging around town and I find myself filled with envy over thier swaying ponytails, the soft heavy locks they brush everyday, the braids that fall down their backs, the feeling they must get as they toss the silky ends over their shoulders when flirting… knowing I’ll never have that feeling again.
The shape of my life is different. I once was someone involved in as many things as I possibly could be. I looked forward to 15 hour work days. I ran 4-6 miles 5 days a week. I loved pushing myself harder than I thought I could go; challenging myself everyday to live fuller, create more, love harder. Now I mostly crave couch time so I don’t get too tired. Drinking my tea. Reading on my porch swing. Watching from the sidelines as my friends and siblings fully come into their own, sculpting their dreams into realities, while I release my own dreams…. allowing them to float away so that I may remain content.
And there’s no Omie.
There’s just no Omie. So I never actually feel home.
Ugh. Boo-hoo. What an effing pity party I’ve just thrown for myself.
My point is, really, that now I’m just gwen. And that’s okay. There’s something wonderful about letting go of everything that doesn’t allow for peace to permeate; something beautiful about accepting that everything in this life is temporary.
But Gwen F***ing Edwards grapples with accepting just gwen.
I recently had a wonderfully difficult and honest conversation with an amazing group of human beings. (Fayetteville, I love you. Thank you for being home to so many amazing human beings that embrace and care for me.)
At the heart of the conversation surfaced the thought: isn’t it the point to get to this place?
Yes, absolutely, what is lost must be grieved. But since life is transient, since the whole of human existance will continue with or without a single individual, since nothing we do as humans is truly lasting… isn’t the hope to transcend all earthly goals and to exist in the place where you find joy in each mundane moment? Where all that matters is the love you can be each second?
So what the goals have become… holding my friends’ children, singing with my nieces, silently watching sunsets with only the presence of God, being present in each moment without worry or a list of pressure-filled tasks… are actually more valuable and ambitious than what the goals were.
Is this the next level of living life fully with risk and abandon?
End cancer: the sequel, chapter 7.
May 5, 2015
The PARP Inhibitor BMN 673 trial was working very well for me. But a routine scan in late February showed a new spot on my liver. A tiny spot. A barely visible on the scan spot. However, four different radiologists examined the scans independently of one another and all reached the conclusion that it was in fact new cancer.
“A trial sponsor measures successes and failures in treatment differently than an oncologist does,” Dr. H explained. He went on to say that with any treatment you may have spots that shrink, spots that maintain and new spots that surface. As an oncologist, he looks at the overall picture. He felt that BMN 673 was still working based on all the spots that had disappeared. He deemed this overall shrinkage as success over the one tiny new spot.
The pharmaceutical trial sponsor BioMarin viewed the new spot as treatment failure; confirmation that the drug was no longer working for me. This has a lot to do with how the FDA drug approval process works, what they need their numbers to look like in order for a drug to reach the market and how closely a company must follow guidelines in order to keep their drug from being dismissed by the FDA on a technicality.
Dr. H also felt like this new spot coincided with a dose reduction that BioMarin had forced on us due to some of these aforementioned guidelines. He felt like the lowered dose just wasn’t strong enough. Oncologists tinker with doses all the time when overseeing chemo or other treatment because every patient is different and every cancer responds differently. It’s like solving a puzzle to figure out what will work for each individual.
Based on his strong feeling that continuing this treatment was in the best interest of my health and longevity, Dr. H filed for compassionate use of the drug. And after many screaming matches with with BioMarin peeps over the phone (“This is NOT how we treat patients!”), he was denied this request.
After speaking with some people who know more about compassionate use than me, it seems to be that compassionate use in general is just a scapegoat. The FDA gets to say that they are not denying anyone the right to put medication into their bodies. But pharmaceutical companies have no legal obligation to grant use. Ever. So appealing something like this would mean expending enough energy to gain national attention through the media and essentially bully BioMarin until they give in. (It is more likely that I could grow to be six feet tall.)
“Is that really how you want to be spending your time and energy when you are unsure of how much time you have left? Time and energy that may never lead to anything?” Dr. H asked.
No. It isn’t at all.
Thus, I have no access to the medication that was working so well for me until it is FDA approved. The drug has been fast-tracked for approval. But even with fast-tracking, it could be another 2-5 years before it’s released to the market.
This leaves me with the following options:
1) No more treatment.
Live for as long as I’ve got left and be at peace with the fact that death is not a tragedy, it’s just part of the deal.
2) Alternative treatments.
I’m still seeing a reiki healer. I’m ingesting frankincense. I’m doing lots of yoga. I’m drinking lots of juice.
I also recently spent some (absurdly surreal) time in California at a cannabis clinic. Very long story short… turns out an appropriate, daily dose of medical marijuana is too much for me. Being on it long term is not a great option.
3) More chemo.
Dr. H says there’s a “gentle” platin-based chemo regimen he could put me on that he has had a lot of success with in metastatic patients. Platin based chemos aren’t as harsh as they used to be. I’ve never been on one before, so he has every reason to believe my cancer would respond to the new drug. He could break up the dose, giving me a very low hit once a week. He says some women get through this way with no side effects. Not even hair loss.
But I don’t want more chemo. Last go round, it proved not effective. And just everything about it… nothing tastes good, the malaise, what it does to my skin, the smell, all the other medications you have to take just to be able to get out of bed. And the fact that I would have no freedom to roam the way I like. I would be committed to being in that chair once a week indefinitely. No thank you. I’d rather stick with option number 1.
4) A different PARP inhibitor.
In December, Lynparza became the first FDA approved PARP Inhibitor. So Dr. H can just write me a prescription for it.
Here’s the catch… It’s only been approved for ovarian cancer patients. Therefore, my insurance company will not cover the prescription because I have breast cancer and not ovarian cancer. I can still fill the prescription, but I would have to pay for the drug out of pocket. And it’s brand spankin’ new, which means it is costly.
How costly, you ask?
Any treatment decision at this point is a decision meant to buy some time until BMN 673 is approved, or Lynparza is approved for breast cancer patients (this process has also been fast-tracked) so that I can get the meds I need with insurance coverage. And even with the cost, this last option is the best one for me.
My dear fundraising warriors have started a campaign in the hopes that we can cover the cost of the Lynparza until my insurance will.
Donations may be made here: Team Gwen
Thank you in advance for contributions. Here’s hoping we reach our goal.
End cancer: the sequel, chapter 6.
April 28, 2015
I think there must be a specific moment that the spirit leaves the body.
A single second when the living becomes the dead, passing from one realm to the next.
But Omie’s spirit left her earthly form as imperceptibly as my grief had been creeping in over the past two months.
I built a sheet fort on the porch.
In the last two days of her life, she was unable to walk in and out of the house. I would lift her into the yard when she needed and then lift her back onto the porch. All the strength in her legs completely gone.
I covered her in her favorite blanket. I fed her roast chicken and turkey. I palleted down next to her on the floor. She slept through the night with her paw in my hand. I watched her sleep. Memorized her breath. Drank in her dreams.
The sun rose. The vet came. Omie laid her head in my lap. She was asleep before I knew.
There were lemons in the air.
It’s impossible to summarize your best friend.
She broke a lot of wine glasses with her obliviously happy helicopter tail. She brought smiles to people all the way from The Grand Canyon to Central Park. She adventured across 11 different states and several national parks (not too shabby for an Appalachian pound puppy.) She had gigantic paws that made her look like a lion. She would clumsily hold things in her front paws and chomp at them like a bear. She took extra care to ensure bones were hidden when burying them, patting the dirt repeatedly with her nose. She cocked her head when she heard the guitar or the harmonica. She had the softest ears. She had a white patch on her chest that was the magic spot. She had one grey streak running up her nose that formed when we left Abingdon. She had golden eyelashes that fluttered like stardust when she was dreaming. She sounded like the Cadbury Bunny whenever she yipped in her sleep. She ran fast and hard in her dreams, pawing madly at the air. She could run faster than all the other dogs at the park when she was younger. She would swim for hours believing she could catch a duck. She would hunker down, waggle her butt in the air, throw back her head and let out a joyful, “Roo roo roo,” when she wanted to play. She sounded like Chewbacca if you got too close to her right hip. She ran from fireworks. She whined at cats. She hid under the bathmat during thunderstorms. She could fart so loud she would wake herself up only to look around at her rear end as if to say, “Where the hell did that come from?” She listened better than anybody else.
She was my guardian and my charge. The keeper and the kept. The watcher and the watched.
I cannot express how much she gave me. How much she taught me. How even at the very end she was demonstrating to me how to allow for grace and peace. She was reminding me how important it is to put others’ needs before my own. Gently coaxing me to have the strength to hold her until she passed.
Pure. Irreplaceable. Love.
I know people love their dogs. Most people who love dogs and have dogs think their dog is the best dog. But much more than I know this, I know that some things are meant to be. And I think the fairies and the elves in the universe who work very hard to help things along that are meant to be are the very best at helping the right human and the right dog find each other.
Omie and I were kismet. She was the most perfect dog in the entire world. For me.
I miss her every second.
So far, life is unbearable without her.
I still feel her everywhere. Call me crazy, but I can sense her, looking at me with those understanding, naturally makeup-ed eyes and urging me onward. “Now’s the time, momma. Now’s the time to do all the things you couldn’t while I was there.”
Here is the first picture I took of her:
December 24, 2014
It’s been a long time since I documented the happenings in The Cancer Games arena. And there have been many events since last we met here. I will attempt to be brief yet detailed throughout this post.
In the last chapter, things were looking mighty bleak. There didn’t seem to be any satisfying treatment options being presented to me and I was seeking a second opinion at Duke Cancer Center.
Here is my disclaimer about Duke Cancer Center before I launch into my own horrific experience. I have several friends who have been treated there. They have been given lovely care and Duke has given them access to clinical trials and healthcare that has led to remissions or cures. I am certain they do a lot of good for very many people.
But not for me.
Duke Cancer Center is the worst. The absolute worst. From hence forward I will refer to it as Dookie since that is the name it has earned. (And the capitalization of this word is certainly intentional.)
Dookie is a little over 4 hours from my home. This meant leaving my house at 4:30am to arrive on time for a 9am appointment. Every time (but one) that I traveled to Dookie, I would arrive to checkin (And pay for parking!!! Who on God’s Green Earth thinks it is acceptable to refuse parking validation for cancer patients at a cancer center??? Aren’t we paying you enough?) only to be told by Checkin Person, “We can’t find your appointment in the system. Can you come back tomorrow?” Me, “Uh… No. No I cannot come back tomorrow. I drove over 4 hours to get here this morning.” Checkin Person, “Could you stay overnight in Durham? We could reschedule you for tomorrow.” Me, “Are you paying for me to stay in Durham overnight?” Checkin Person, “No. We don’t do that.” Me, “Then no. I cannot stay overnight in Durham. And pay for parking twice. My appointment was set for today.” Checkin Person, “Well, ma’am. I can’t find your appointment in the system.”
I could rant about all of the reasons why being called ma’am is my biggest pet peeve (outside of hair on the soap in the shower), but I believe the bigger rant in this situation is obvious.
The above exchange happened 5 out of my 6 visits to Dookie. Each time I was forced to use my Mean Voice in order to be seen by the doctor. (I hate using the Mean Voice.) And each time, that meant waiting until 4:45pm before Dr. B. was finished with all of her other patients who were scheduled for the day. This created an extremely hostile situation in which neither Dr. B. nor I was thrilled about seeing each other.
And there were a host of other things.
The one time that they did find my appointment in the system, I was taken to an exam room only to be met by a nurse who informed me Dr. B. was not in that day, despite the fact that I had an appointment scheduled with her. Could I come back tomorrow?
There were times I would be halfway home on the drive back to TN, only to receive a phone call that they had forgotten to do something, could I please turn around and come back so they could do an extremely-important-yet-slipped-our-mind-ha-ha thing?
There was the part where every nurse/lab tech/doctor I saw continually forgot that I’d undergone a hysterectomy earlier this year and presented me with a cup to urinate in to make sure that I wasn’t pregnant. There was one day when I was asked by 6 people in a row (within the span of 15 minutes) if there was any chance that I was pregnant (again, after arriving and waiting 7 hours before being seen by anyone), which led to me scream crying at the 6th person, “I don’t have an effing womb! Doesn’t anyone read a chart around here?” (I was clearly still working through issues of my own barrenness.)
Then there was the extreme idiocy of the research nurse I was assigned to. Every time she was in the room with me and Dr. B., she would give the doc misinformation about my case and I would have to correct her, making everyone flounder around for my chart to double check my information. Which makes me wonder what was happening when I wasn’t around to provide said corrections. When this happened, I was scoffed at a little… as if there was no way I could be right… this, followed by sincere surprise that I knew my own facts better than the people in the room who were clearly never looking closely enough at my chart.
But my chief complaint was the utter hope-sucking nature of Dr. B.
Every time I saw her, she reminded me that I had a very limited life left to live. No time. No healthy days left. Not much to look forward to. (Remember, this lady is considered one of the best in the country for treating young women with breast cancer.) This fear factor was used as leverage to pressure me (without technically coercing me, since that is illegal) into signing up for a clinical trial that she was overseeing. A trial with logistics that made me extremely uncomfortable. But Dr. B made me feel like since I was dying anyway, I might as well sign my life over to be her lab rat so that I might help someone in the future.
Each time I left Dookie I was exhausted, sobbing, shaking and feeling completely hopeless.
Two Good Things:
The first good thing is that Dookie insisted on re-screening me for genetic mutations. Back in 2011, I tested negative for the BRCA 1/BRCA 2 mutation, much to my doctors’ surprise. But there are newer ways of looking at genetic sequencing within these genes. The following is an excerpt from a genetic testing pamphlet provided by Myriad Genetics:
‘Patients who tested negative for a BRCA1 and BRCA2 genetic mutation may still be at risk for familial breast or ovarian cancer. Recent research found that standard genetic testing failed to detect cancer-associated mutations in the BRCA1 and BRCA2 genes in about 12 percent of patients at very high risk of hereditary breast and ovarian cancer. As genetic testing technology has improved… a “rearrangement panel” in the BRCA1 and BRCA2 genes became available … This new technology, called BRACAnalysis® Rearrangement Test (BART), detects rare, large cancer-associated rearrangements of the DNA in the BRCA1 and BRCA2 genes, which were previously undetected by standard genetic testing. BART is recommended for patients who have a strong family history of breast or ovarian cancer. It is estimated that about 1 percent of individuals who meet the family history criteria for BART will have a mutation detected by the test. … BART is not part of standard BRCA testing and must be special ordered.’
Did you read that last part about the 1%? That’s me. And my mom (And now, we have learned, my little sister). We are people who test negative for the BRCA mutation but are actually positive because our gene sequencing is messed up. (In our case, we have a chunk of the BRCA1 gene missing from the sequencing. The chunk missing is identical in me, Mom and Little Sister.)
Dr. P in ABQ had pushed for me to have this newer BART test, but after repeated appeals and denials of coverage for the test from my insurance company over the course of a year, we gave up on further screening. There was no way I could afford to pay for the test out of pocket.
But Dookie found a way to get the test covered through screening me for the clinical trial they were aiming to strong arm me into. So, I’m BRCA positive, which means I am eligible for a new league of drugs that are being developed to treat patients with genetic mutations.
Which leads me to the second good thing.
Dookie is where I first heard the magical words ‘PARP Inhibitor.’
This is the latest development in treating genetic cancers. Here is an extremely brief explanation of how they work:
Poly ADP-ribose polymerase, or PARP, plays a key role in DNA repair by detecting and initiating repair if a DNA strand breaks. PARP inhibitors inhibit DNA repair in cancer cells, so cells deficient in other DNA repair pathways, such as those seen with BRCA mutations, can be sensitive to PARP inhibitors eventually leading to cell death.
There are several different types of PARP inhibitors being developed. Some have proven to be much better at targeting cancer cells rather than killing off other cells that are damaged for some reason (as that happens in our bodies) and need to be repaired by PARPs.
So on (what turned out to be) my final appointment day at Dookie, I arrived at 9am, was told my appointment could not be found in the system, was asked to come back the next day, demanded to be seen that day and then told I would need to sit in the waiting room for 8 hours. Fueled by my frustration, I took it upon myself to find a solution to the problem.
I had first heard the magic PARP inhibitor words from the genetic counselor. I spent 7 hours researching the different types. I found the one that was working best for breast cancer patients. (A drug being developed by Bio Marin, currently called BMN 673.) I searched all clinical trials involving BMN 673, cross-referenced the ones I was eligible for and found the nearest clinic to my home where I could enroll.
By the time I saw Dr. B. at 5pm that day, I had all the info pulled up on my space phone. I held the screen up to her and said, “Hi. Please refer me to this clinic.”
Hope Women’s Cancer Center:
This is the clinic I asked to be referred to.
Dr. B, “I don’t care where you get the PARP inhibitor, as long as you get one.”
And getting the PARP inhibitor at Hope has definitely been a strong choice.
I. Love. It. Here.
AM, my research nurse, called me immediately, got me in for screening ASAP and by the first week of September, I was starting my BMN 673 clinical trial. After some tinkering with the dosage to find the best fit with my BMI, I take one 673 pill a day. And I have labs drawn once a week.
Again… I love it here. I cannot say enough how much I love getting treatment in this quaint little clinic in Asheville with nurses who treat me like family and Dr. H who listens to my instincts/opinions involving my treatment plan. I knew he was the right doc for me when after our first meeting he said, “I’m glad to hear your thoughts. Now that we’ve got your plan settled, let me show you a picture of this giant fish I caught in Alaska.”
Everyone in the whole place knows my name is gwen. They never call me Elizabeth or ma’am. They text me. They answer my calls. Even after hours. If it’s snowing in the morning when I have to drive over the mountain for my weekly appointment (which is only an hour drive! so much better than 4.5), I get a phone call asking if someone needs to send M’s (one of the nurses) husband out with his snow tires to get me. They invite me to baby showers. They vie for who gets to keep me in their home if the weather is too bad for me to drive back across the mountain. They know my nieces’ names. They fight with the insurance company for me. They give me gas cards once a month.
I feel certain that The Universe made my experience at Dookie utterly horrible so that I may find this clinic that I love so much.
I get a shot of this drug once a month in addition to my BMN 673 pills.
This drug was originally developed for women who are at a high rick for osteoporosis. It helps with bone strength. (Dr. H says he has no idea why Dr. B at Dookie did not already have me on this drug. As a woman in her early 30s who has had a hysterectomy, I am at a high risk for osteoporosis. He was also incredulous that Dr. B pushed for me to have 5 rounds of the AC/Red Devil chemo. He said that was standard of care in the late 90s. And with the toxicity associated with AC coupled with my small stature, I should not have had more than 3 rounds. Another coupla womp-womps on Dookie’s part.) Another good feature of this drug is that it has proven to eliminate bone metastases in some cancer patients.
There is a clinic in Ecuador, Nova Vita, associated with the Young Living essential oils, that seems to be curing people’s cancer by injecting them with a concoction of Frankincense, Sodium Bicarbonate, Vitamin C and Sandalwood. I have a Reiki healer I have been doing energy work with (clearing out that emotional cancer) and she has me on a Frankincense regimen. I cannot be injected with the stuff here in the US, but I drink a spoonful three times a day and use it topically over all the spots where I’ve been told the cancer lives.
Diet & Exercise:
For the past 6 months, I’ve cut out everything I can think of that might feed my cancer from my diet. No meat, no soy, no dairy, no gluten, no sugar, nothing white (e.g. rice, potatoes, etc.), no alcohol, no caffeine. Mostly raw fruits and vegetables.
It’s been difficult being this restrictive. But it has kept me feeling great. My hemoglobin and white blood cell counts bottomed out a couple of times. A couple of blood transfusions later, I’ve discovered that adding turkey and fish back into my diet (as well as drinking a ton more carrot and beet juice) seems to help keep me stabilized. I’ve also allowed myself to add a cup of coffee back into my morning routine, cause it keeps me happy.
And I am officially back up to covering 3 miles on my elliptical 4 times a week. This may not seem like a particularly huge feat, especially when compared to how much I used to run. But if you had told me this time last year that I would ever get off the couch again, I wouldn’t have believed you. So I am feeling very accomplished.
And I’m continually amazed by how great I feel.
I’ve got an excess of joy in my heart. I feel healthy and strong. Full of life and hope.
Thus the strict regimen continues. (Christmas cheating doesn’t count, right?)
Some Life Wins:
This summer, my extended family on my mom’s side all gathered on Tybee Island to celebrate her 60th birthday. Labor Day weekend, I had a celebration of life party. I spent the entire weekend being surrounded by people I love the most and being happy enough to burst.
This fall, my friend GH helped me cross off a huge event on my bucket list by taking me on an amazing sailing voyage. Now I’m hooked and want to sail around the world. Anyone wanna buy a boat with me? This month, I finally got my nipples tattooed. Thus completing the final step in breast reconstruction. I feel so relieved to have it behind me at last. And I recommend Little Vinnie’s to anyone out there who needs to have this procedure done. I could not have asked for a better tattooing experience for such an intimate part of my body. And in January, thanks to the efforts of BW, I will get to sing on the Grand ‘Ol Opry original stage at Ryman Auditorium. Starting 2015 off right. (Pictures to come.)
Hope for Realsies:
I had a set of scans done the morning before Thanksgiving. My research nurse, AM, called me that afternoon while I was driving home. “What’s wrong?” I asked. “Did we forget to do something?” AM, “No. I know we’re not supposed to look at the scans before the doctor sees them, but I just had a feeling this morning and so I peeked.”
All of my bone mets have disappeared except for one tiny spot on my femur, which appears to be shrinking. The spots on my liver are shrinking. And the spots in my lungs are stable.
Let’s reread that bit. It’s worth it.
All of my bone mets have disappeared except for one tiny spot on my femur, which appears to be shrinking. The spots on my liver are shrinking. And the spots in my lungs are stable.
Something seems to be working. Let’s hope it keeps on.
A Million Thanks:
Thanks to all of you who have donated through my $5 Challenge campaign. I am so very close to having medical bills from the past 3 years paid off. I could not have done it without your love, support and generosity. I’m still working on thank you cards. I promise you’ll get yours soon.
End cancer: the sequel, chapter 5.
June 20, 2014
After three rounds of The Red Devil of chemos (Adriamycin combined with Cytoxan), scans came back showing my tumors are ‘relatively unchanged.’
Bad news: nothing has shrunk. Good news: nothing has grown. But, essentially, it has been ineffective in killing the cancer.
Dr. K. suggested we switch to an oral chemo, Xeloda. He explained that even though the Adriamycin is the most toxic thing we could have hit my cancer with, that sometimes it’s about finding the right chemo for the individual. He was hopeful that the Xeloda might be more effective for me than The Red Devil.
I asked what my other options were. If there was a way to be more aggressive. He expressed that he felt Xeloda was the only next option we were looking at. (This would consist of taking a double dose of 8 horse pills in the course of a day. Sixteen pills in total, every day, quite possibly for the rest of my life. Most likely, for the rest of my short life.)
I wanted a second opinion. I scheduled an appointment at Duke Cancer Center with Dr. B., who is one of the best in the field.
In the exam room with Dr. B.
“I can find no scientific reason why your cancer grew after your hysterectomy,” she says. “I can find no scientific reason why your cancer did not respond to the Letrozole.” (Letrozole being the aromatase inhibitor I was placed on after my hysterectomy to get all of the residual estrogen out of my body.)
Reminder: there are three ways in which breast cancer can feed/test positive. My cancer has consistently tested as only estrogen positive. So removing the estrogen source in January should have removed the problem.
Dr. B. is discomfitingly baffled by this. She is unsure of how to treat me if she cannot find a methodical correlation between cancer growth and cancer food source.
“I need six weeks to retest all of your samples,” she says. “I think something has been missed.”
She believes my cancer may have the slightest HER2 positivity. If she is right about this, it would explain why my cancer continued to grow even after the estrogen supply was cut off. And it would make a world of difference for my treatment plan, opening a lot of doors.
She is having unstained slides of each of my tissue samples… all the way back from my original breast biopsy in 2011 to my 2014 hysterectomy… sent to her so that she may re-examine everything in the hopes of uncovering an HER2 positivity.
I believe her hopes to be far-fetched.
That’s 5 tissue samples and at least 7 doctors that would have missed a HER2 positivity. It just doesn’t seem possible to me.
Dr. B. speaking the words, “I can find no scientific reason why your cancer grew after your hysterectomy,” confirmed for me something I have felt for a long time. I believe my cancer to be a physical manifestation of a series of emotional/spiritual cancers that have gone unhealed for years. I believe my heart chakra is all effed up from old wounds and that’s why tumors sprout up on all sides of it.
Crazy. Unscientific. Impossible. I’m sure are words a lot of people would use to describe what I just typed. But I’m a believer. A believer in the power of positive and negative energies. A believer that the state of our spirit effects the state of our physical body. And while I am convinced that western modern medicine is the best way to combat my physical cancer, I am also convinced that I have a lot of spiritual work to do in order to combat the emotional cancer that is, in my mind, feeding the beast.
But maybe I’m wrong and maybe Dr. B. is right about this hunch she has after all. We shall see.
I will meet with Dr. B. again in 6 weeks.
And in the meantime, she does not concur with Dr. K. that The Red Devil has been ineffective. There is a spot in my right hip showing up on scans that they suspect is cancer. Dr. B. said on the latest scan, that spot was ‘flared up.’ She said where Dr. K. interpreted this as cancer growth, she interprets it as dead cancer cells. The flare up, she believes, is my hip healing where cancer used to be and is no longer.
So while she takes 6 weeks to pour over all of the bad pieces that have been removed from my body, she advises me to have two more rounds of The Red Devil. If anything, it will hold the cancer at bay while she pokes around in the lab. I had the first of these treatments (totaling #4 in the rounds of Adriamycin) on Wednesday. So far, I’m feeling just fine. (Even kicked ass at a callback yesterday.)
So at this point, there are a ton of question marks. And we still have no answers.
What we do have is one very harsh statistic:
Metastatic breast cancer gives me a prognosis of surviving for merely 5 years.
I believe in miracles. And I remain hopeful that I will be one of the exceptions to this statistic.
The thing to focus on is that right now, I feel fantastic. And I want to keep having adventures with the people I love the most in whatever amount of time I am blessed with.
So, come on, y’all. Let’s take some risks together and do all the fun and daring things we’ve ever wanted to do.
End cancer:the sequel, chapter 4.