All The Things

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.

Duke:

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.’

PARP Inhibitors:

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.

Xgeva:

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.

Frankincense:

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. Gosnell Family Aunt Gwen 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? 10384538_10152830190260549_3474287390244761763_n 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. Little Vinnie's interior moral support thumbs up from MK 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.

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5 Responses to “All The Things”


  1. So great seeing you recently; you are looking more beautiful every day! Thanks for the update!

  2. Doug Says:

    So good to hear this wonderful news. I guess it is true how good fruits and veggies are for our bodies. Imagine, of all the things we eat, the God-made things are best for us.
    I completely understand though that your positive attitude and unwillingness to give up have enabled you to kick cancer’s ass. We love you so much, sweety. Thx for keeping us updated! Love ya!

  3. a different g Says:

    Wow. Wow, wow, wow, wow…..wow.
    ——–

    (….and a small “bam!!!!”)

    (Keep on kickin’ on, small g – and your right hand arse-kickin’ big G above. Holy sh#t. Wow, wow, wow.) ( and a big, fat, merry Christmas too. Tx for posting ~~~ )

    Wow, wow, wow, wow, wow……

  4. Tara Says:

    Love this fabulous Christmas news!! Many blessings and love to your Gwen!!

  5. G Says:

    So glad to hear from you! My Mom and I are always thinking about you and praying for you. I read your posts out loud to her, usually while we are hanging out in the kitchen. We are so glad that Hope Women’s is such a bright spot in your life. Just know that we are thinking about you!

    Btw we both love your beach hat! Super cute! 🙂


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