January 2, 2019 –
HERE’S YOUR SIGN…
I found myself in an all too familiar space this morning,
both physically and emotionally. Lying
on the acupuncture table, with the last needle placed, I felt the tears start
rolling down my cheeks. I looked out the
window at the pouring rain, which always seems to depress me (I could never
live in the Pacific Northwest…sorry Gina J). My eyes started to well up even more as I
realized I was crying, and before you know it, I was weeping out loud. I felt guilty, and burdened, as I wanted to
ask God why…why again, and again, and again, and again. But just like the time 4 months ago, when I was facing the
reality of my fifth cancer diagnosis in 5 years, I laid on that table, tears
rolling down my face(except this time my mascara wasn’t waterproof), and I
asked God for a sign that I was going to be OK. When I paused for a moment, I once
again turned my attention to the rain. A
Ha…healing rain. There it was. God’s tears falling with mine. Years ago, my
dear friend Gina sent me a link to the song Healing Rain. And here I was now, seeing it fall, knowing
that God was saying…Here’s your sign.
I suppose I should rewind a bit, and tell you how I came to
this point. Without too much detail over
the last couple years that I haven’t written about, I will say that my doctors
have had to play (as Dr. Hanna described it), whack a mole with my cancer. After my liver surgery in 2016 (Same Name,
Different River), I faced two additional cancer metastases to both my liver and
kidney. My doctors have been watching me
closely, and this time the tumors were small enough that they both could be
treated with microwave ablation (a one-time buzz that only required an
overnight stay each time). So, one week
before hosting 14 people at my house for Christmas in 2017, I had a kidney
ablation. And, like always, I somehow managed to rise to
the occasion. Then, in January of 2018,
I had a liver ablation, which didn’t quite go as easily or smoothly as the
kidney surgery did, but I managed to make the best of it. Life goes on…until it doesn’t.
I was back on a 3 month follow up, and my April scans
showed that the ablation procedures had done their jobs and I was back on the
mend. They don’t ever say the words
cancer free to me, and I doubt they ever will.
The most I can hope for is a dance with NED every now and again. NED isn’t some mystery man waiting to give me
a twirl, but it means No Evidence of Disease.
But there is a NED, one that would sweep my best friend off her
feet.
Terry and Ned’s wedding was over Memorial Day weekend this
past year, and I was so excited to be giving a reading.
But the weeks leading up to the wedding left me wondering if I would
even be able to attend, let alone speak to their love. You see, I had started to experience intense
pain in my jaw that emanated through my teeth, and through the lower branch of my
trigeminal nerve (the only branch not affected by my original cancer). Brushing my teeth had become a burden, the
pain so great that it would bring me not only to tears, but to my knees. My jaw had become so tight, that getting my obturator
in and out was becoming almost impossible.
So, while I could, I took it out so I could properly irrigate all the
nooks and crannies that make up the inside of my mouth...like the deep, dark
tunnels inside a cave left from my first tumor and treatment. But, what I
didn’t consider was that I wouldn’t be able to get it back in. Without this device, speaking is very
difficult for me, and understanding me even more so. Not only was I dealing with incredible pain,
but now I was facing the very real possibility that I wouldn’t be able to get
it back in by Terry’s wedding. But, I
was going to go to that wedding and do that reading for Terry and Ned,
regardless.
Multiple rounds of antibiotics, visits with my dentist, an
oral surgeon and more, and the answers just didn’t seem to add up. After trying acupuncture once before at MD
Anderson, I decided to bite the bullet and see if it could help with my
pain. After several rounds, my pain
started to get better, and I was able to open my mouth wider than I had in over
15 years. I made it to Terry’s wedding
and I cried as I read the words…tears of joy for my best friend and for the
fact that I was there to share it. I may
not be dancing with NED, but Terry was, and that was enough for me.
Another one of my dear friends, Deb, came out for a visit
to Texas, just a week after I returned from Colorado. I’m lucky to have such great friends, with
such unshakable faith. They remind me
during those times where I didn’t think I needed to rely on HIM, that there
will never be a time that I don’t. Deb
and I started new daily (OK, maybe not daily) devotionals, mine being ‘How to pray for healing’. I didn’t realize at the time how prophetic
that choice would be.
After these two amazing visits had come and gone, I had a
feeling (and quite frankly, a fear) that the pain of the previous months was
something more than a tooth problem.
I’ve always tried to keep the
fear and anxiety that come with cancer away. But pain has a way of wearing you down, and I
became fearful that the cancer was back.
One thing fear does do, is motivate you. I called MD Anderson and told them that I
wasn’t comfortable waiting until September to have my Head/Neck annual
scans. Ironically, last year was the
first time they put me on a year follow up cycle. I had been scheduled for every 6 months for
the last several years, but since I hadn’t shown any signs of a local
recurrence, they thought I should be fine waiting the extra six months. During that call, my doctors immediately
scheduled me to come in and on June 25th, I had an MRI of my
head/neck, and a CT of my abdomen/pelvis/chest.
As Will and I headed to MDA on the 26th to get
word on the scans, we heard the song, “Everything’s Gonna Be Alright”. I felt a sense of relief and simply said to
Will, everything IS gonna be alright. It
just so happens my Facebook memory from 7 years ago to that day, was a video of
Molly (my youngest daughter who was 8 at the time) playing Amazing Grace on the
piano at our old church, Placentia Presbyterian Church…the church where my
faith was anchored; the church where I read the entire Bible in 90 days; the
church where I was married; the church where my entire family, including myself
was baptized. I thought to myself, these are
Godincidences…reminders for me to rely on HIM; His way of showing me that He
has never left my side. I went into my appointment with Dr. Hanna,
ready to hear the scan results, knowing ‘everything was gonna be alright’...David Lee Murphy and Kenny
Chesney told me so it had to be true! Here’s
your sign…
After all the usual chit chat with Dr. Hanna about the
girls (Meghan at University of Arkansas and how he had roots in Arkansas
working at UA – Little Rock until 2004), Molly’s dance and my new Patient
Engagement job, he said to me, "Five years." He emphasized it with a pregnant pause. He was excited about me hitting the five year survival mark and wanted to recognize that. In my mind, it wasn't five years cancer free though, so I wasn't quite as giddy as him. But then, he smiled at me his sweet smile, and said with all sincerity, “I’m proud of you.” But there was something
in the way he looked at me this time that made me get a sinking feeling in my
gut, that maybe David Lee Murphy and Kenny Chesney were liars. Despite the songs directive not to, I
started to hit that internal panic button.
When he called in the Head/Neck radiologist, I knew it wasn’t good. They both began to explain that the pain I
was feeling and the MRI imaging was concerning for recurrence. The host of medical bystanders from around the
globe simply watched our communications.
He wanted me to have a CT the
next day to further assess the situation.
He tried to put me at ease by saying he was paid to be suspicious. That anything out of the ordinary is guilty
until proven innocent. I sure hoped the
CT would clear it of all charges…but it didn’t.
Two and a half short weeks later we were on that same drive
from Austin to Houston that we’ve taken too many times to count. I’m not superstitious, but did I mention that
this was also Friday the 13th? We had a very early 4:30 am start,
and once the sun started peaking through, I read that daily devotional I had
started with Deb just one short month earlier.
It told me to pray with an expecting faith. Pray in faith and do not doubt. Pray with eager expectation and unwavering
assurance that God is with you. He is
listening to your prayer and will respond with a miracle. I know it’s
possible…I’ve been the recipient of His miracles. Mark 5:34 He said to her, “Daughter, your
faith has healed you. Go in peace and be
freed from your suffering. Another verse quoted during that devotional
was Mark 9:23 And
Jesus said to him, “If you can, all things are possible for the one who
believes.” Don’t think it’s
coincidence, because it’s so much more, that this is the same verse Terry had
read to me the night before when she called.
And, as we entered Houston, 3 hours into the drive, guess what song came bursting
through the radio? David Lee Murphy and Kenny Chesney would not let me doubt,
telling me yet again that ‘Everything’s gonna be alright.” It brought me to tears this time as I was
headed to MDA for my biopsy. Here’s your
sign…
I don’t believe in any power other than that from the Lord,
however, this Friday the 13th wasn’t going very well. Conscious sedation was an epic failure. I was in a light sleep, eyes closed and I
felt something hurt. I’m not a doctor,
but I know I shouldn’t be feeling ANYTHING. Yet all of a sudden I felt pain. I heard someone say, “She’s out, right?” One more prick and my eyes popped open and I
yelled, “No she’s not!” It made me think
of some scary zombie movie when they pop back to life. I bet they still talk about that (it had to be pretty funny). They
used more local to try to ease the pain. It felt like a chisel and a hammer, but these
weren’t sculptors, and I was certainly no masterpiece (although God would beg
to differ…aren’t we all his masterpieces?).
Recovery that day went as expected though, until the last final dose of
dilotid. The nurse decided to mix it
with an anti-inflammatory this time and I immediately felt a wave of nausea
come over me. That feeling never ceased,
and as we drove the long 3+ hours home, I was dry heaving the whole way. That is until we finally hit RR 620 in
Lakeway (where we live). It was then as
we passed the high school that I started puking. Seriously?
We were in the car for more than 3 hours and it couldn’t wait until we
got home in 6 minutes? Maybe it was the
traffic on 620 that made me sick…locals know what I mean. Luckily I had my puke bucket with me, which
sloshed the remnants of the gingerale and two small bites of graham cracker
that I managed to get down in recovery.
I felt better after tossing my cookies, just like after a good night of
drinking, but without the fun. A two
hour nap at home, and 11 hours of sleep that night and I was almost back to
normal. Biopsy results in 3-5 days.
It was Monday, 7/16 at 1:27PM when I was working on Cancer
Survivorship Care Plans for work, that I got a call from an all too familiar
713-745#. My heart skipped a beat as I
answered, and it was Katie from Dr. Hanna’s office. I told her I was surprised to hear from her
already…it hadn’t even been one working day since my biopsy. I think I went to another place in my head as
I heard her say, “the pathology did unfortunately show adenoid cystic
carcinoma.” Uggghhh…here we go
again. Quick results are NEVER
good.
Will was on a ride when I got the call. The tears and cries of disbelief were once
again overwhelming me. I left him a
message and told him to call me or come home ASAP; that Dr. Hanna’s office had
called and it wasn’t good. He didn’t
need to hear me say the words. He could
hear it by the cries and the cracks in my voice. I didn’t tell ANYONE else, even though my
heart wanted to for support. I didn’t
feel right about it without not yet having told the girls. There is never a right time to tell them, but
today was not the day. Tomorrow night
after Molly gets off work at 8. Meghan
just got home from a trip to Little Rock and Molly was in a dance intensive all
day. I didn’t want to add to their
physical exhaustion, with the mental exhaustion of having to tell them for the
5th time that their mother had cancer. I wish that conversation on not even my worst
enemy (not that I have any ;)
After hearing that news, all I wanted to do was lie on the
couch and cry. I watched the Ellen Show,
which I hadn’t seen in years. You know
how she is always playing these funny games with people in her audience? Well today she had a Kicking Boot game. This was not lost on me, as the theme for my
journey has always been a boot and to Kick Cancer’s Ass. Here’s your sign… That same day Will got a
random email from his company about their employee cancer group’s
fundraiser. And, after Ellen I scrolled
through Facebook and saw that a friend and fellow survivor had posted a YouTube
video of Matchbox 20’s song 3AM. I
thought this an odd match…my 70 something British friend posting Matchbox
20. But I’ve always loved the song. When I watched the live video of him playing
the song and explaining the meaning, it all made sense. He played it slower than usual, and with only
the piano, explaining that he had written the song about a time when he was 12
and his mother had cancer. He wrote it so its meaning was open to interpretation, but
hearing it again through my survivor’s ears made me understand its true meaning and love it even more. “I can’t help but be
scared of it all sometimes, but the rain’s gonna wash away I believe it.” Healing rain. Here’s your sign…
That night I took the girls out for yogurt and Meghan took
control of the tunes, which is something Molly has started doing as well (as if
I’m so old that I can’t possibly play good music). We took the Camaro SS convertible (my dream
car that I got after my liver ablation in January), top down and blaring some
tunes. I told her to play some good old
90’s or early 2000’s(which by the way was the music they grew up on and now
love…my taste in music not so bad after all).
The first song she played was 3AM by Matchbox 20. I could hardly believe it. I hadn’t told her that I watched that video earlier in the day. Here’s
your sign…
As I sit here now listening to the rain as I write this, it’s a
good reminder that it’s OK to be scared and tired, but God’s going to wash it
all away. That was, and still is, a fact that I need to cling
to. You see, playing Whack A Mole is
much easier, to an extent, when there is a metastasis to another part of your
body versus a local recurrence. Having
already had radiation to my head/neck, it’s highly unusual to have additional
radiation to the same location (even if my first radiation was proton therapy,
which spares healthy tissues). So,
having a diagnosis, did not immediately equate to having a plan, which made the
conversation we needed to have with the girls even more difficult. I wanted to sit both girls down together,
like we had most of the times before, but getting two teenage girls together in
the same room, at a designated time, without making it seem like our motives
were questionable, is difficult. We
decided it would be worse to try to make a production of it. It somehow seems more devastating sitting
them down together like they were witnesses to the crime of the century. No, we would just tell them each
individually. We told Meghan a little
earlier in the day, and you could see the exhaustion and fear in her eyes. She’s strong, and said with a crack in her
voice, “You just can’t get a break!”
Writing this right now brings tears to my eyes. It was such a genuine response, and so damn true. But the sad thing
is I feel the same way about them…my family…they just can’t get a break from
this either. Meghan asked about treatment options and
plans, and we simply told her they were trying to figure it all out. This wasn’t a lie, but it wasn’t actually the
truth either.
Molly was at work until 8 (her summer job at the swim
center), so we just waited. Moments pass
ever so slowly when you are waiting for anything, but imagine waiting to tell
your kids you have cancer…again. As we waited for her to get home, we passed the time, doing what any normal family would do. We watched Family Feud (oh wait, that’s not
what normal people do? LOL). I don’t
understand my obsession, but when we were little my cousin Bridget and I always
wanted to be on the show with our moms and our Grandma. We never did (Fun Fact: I was a contestant on Price is Right though!), but I still yell at the TV and
contestants who miss the most obvious answers.
I sometimes even call them morons (not nice, I know). Anyways, I digress, but it’s important to the
story. Molly got home from
work, and we all were sitting awkwardly watching FF. I was waiting…for what I don’t know. But the words didn’t want to come out of my
mouth. Then, Steve Harvey started
talking to one of the contestants. It
was a man my age who told Steve that at the age of 29 he was diagnosed with
cancer being told he had two months to live.
There he was 21 years later doing great.
I could hardly believe what I was hearing. This was my opportunity to tell her, with a
positive spin, that yes, I had cancer, but I would be OK. I got the courage and told her, and her
response was a very quiet “OK”. I could see in her eyes the questions that she
didn’t want to ask, for fear of the answers.
She was stoic as well, but I know this stirs up fear and anxiety. And the last thing I want to do is add to
that more than I already have.
The next few weeks stirred up some fear and anxiety of my
own, as I struggled with the reality that I had a disease that had very few
treatment options left (which is something we never told the girls). On July 31st, I had a meeting with
my medical oncologist, Dr. Glisson, where I asked if Dr. Hanna could surgically
remove the tumor. NO. I asked about clinical trials (I had done
some research and thought I found some viable options). NO. I
didn’t ask about chemo…I already knew.
NO. I asked about compassionate
use. NO.
I asked about RNA testing.
NO. As I worked my way down the
notes in my journal, I started to lose Hope (cancer can wear you down, no
matter how strong your faith). I left
that appointment thinking there was nothing they could do…at least not now.
Dr. Glisson did give a glimmer of hope, with the news that
she was actually writing a clinical trial specific for ACC that she hoped would
be available in 3-6 months. But she wanted me to see Phase 1 clinical
trials just to put me on their radar should anything else come available. I also decided that I would schedule an
appointment with my proton radiation oncologist, Dr. Frank (who is now also a
co-worker of sorts…we are on the Board of Directors together for the Alliance for
Proton Therapy Access and he is a Thought Leader for a project I’m doing with
my work). Even thought I knew I couldn’t
have proton again, I trust him and his opinions and it didn’t feel right not
having him be a part of the conversation.
I got appointments scheduled with both Dr. Frank and Phase
I Clinical Trials for August 9th.
In the meantime I had to do something to deal with the physical and
emotional pain, so I continued with acupuncture. When I had my first session after the meeting
with Dr. Glisson, Gayl (my acupuncturist) asked me how I was doing and what to
focus on for that day (she could no longer do focused treatments to my jaw
since nothing has been documented on how direct acupuncture might affect a
tumor and we couldn’t take any chances). I told
her I was an emotional wreck and could we work on my ‘chi…or whatever it
is’. She placed the needles and left the
room, and I felt the tears start streaming down my face. I lay there looking out the window at the
blue skies and clouds, not realizing I was about to start bawling. Whatever needles she placed turned on the
waterworks, and no matter how much I tried to hold it in, I couldn’t. As I looked out that window, I asked God to
please show me a sign that I was going to be OK. I didn’t know when or where, but I prayed for
that sign and I waited.
Waiting seemed to be a theme, as I had been waiting for
several months now for a treatment plan.
And on 8/9 I waited 4 hours in a room to see Dr. Frank. Normally I would be quite irritated with a 4
hour wait, but I knew he was working me in, and waiting is all I seemed to be
doing so I was quite used to it. And,
maybe, just maybe, it would be worth it.
As I sat there I heard the familiar ringing of the gong, which made me
smile knowing someone else was on their way to recovery. After finally catching up with Dr. Frank, he
told me the same things I had already heard.
I asked him if there was ANYTHING he could pull out of his back
pocket. Then, with a brief pause, he
said, “Well…”. WELL??? That was the most encouraging word I had
heard in months. He proceeded to tell me
about a protocol (trial) being conducted at MDA using SBRT (stereotactic based
radiation therapy) for re-irradiation.
Typically you cannot have radiation to the same area twice, but they are
testing that theory using SBRT, which similar to proton is a highly precise
form of radiation that spares most of the healthy tissues. He was going to confer with Dr. Hanna as well
that evening. And, he would schedule me
an appointment with Dr. Phan to see if I was even a candidate. He seemed hesitant to recommend a trial that
may or may not work, and could potentially cause damage to my facial structure
which would require major surgery to correct.
But it was a dangled carrot, and today I was a bunny looking to bite.
Since I waited 4 hours to see Dr. Frank, I completely
missed my appointment with Phase 1 Clinical Trials. Luckily, they worked me in as well. The nurse told me about a couple different
trials that she thought I might be a candidate for. I could hardly believe what I was
hearing. When the doctor came into the
room, he babbled off some drug names that I could never remember, let alone
spell, so the details are a little sketchy.
But I remember sitting in a room signing a bunch of documents consenting
to a trial. I told them I would have to
get approval from all my doctors. They
said my medical oncologist had to sign off on it, since she was the one
familiar with my cancer type. A decision
would have to be made within the next couple weeks, since there were only 3
spots available and people were waiting.
I wouldn’t want to keep anyone else from starting a treatment that might
save them, but I also didn’t want to jump the gun with an experimental
treatment. They told me that my
participation would keep me eligible for other trials as they become available
(specifically Dr. Glisson’s ACC trial).
But this could be an option for me in the meantime. That day, I was finally given HOPE for a
treatment, as well as what seemed to be two different options. Things were looking up!
Will and I left Houston that day, exhausted and hungry. All the waiting around left us without an
opportunity to grab a bite to eat, and we left so early (3:30am) that we didn’t
even have breakfast. Our plan was to
stop at Buc-ee’s in Katy (about 45 minutes outside of Houston) and get a
barbecue sandwich! I was so excited
about the events of the day, and just as excited to stop at Buc-ee’s (don’t
judge…I love it there!). Traffic was
terrible in Houston (what’s new) so Will used WAZE to find the best route
home. We always use WAZE, and it often
re-routes us to avoid some accident, but this time was different. It took us
out to some country backroads we had never been on (and we have taken that trip
probably a hundred times in the last 5 years).
We were driving through one stop sign towns with cute names like Orchard
and Wallis. It was beautiful country,
but we had no idea where we were. And,
it looked like we would be dropped back on the 10 FWY in Sealy, well past Katy
and our BBQ sandwich at Buc-ees. It
looked like our hunger would too have to wait.
I didn’t mind too much, as I really loved the innocence and nostalgia of
these old towns. Then, as we drove
through the small town of Wallis, I saw past the intersection the most
beautiful old white church that just mesmerized me. I said to Will, “Look at that beautiful old
church.” And just like that we had
passed it by and I didn’t give it another thought. A mile or two down the road Will pulled into
the parking lot of a gas station/Mexican restaurant. I knew he was hungry, but I said, “Please
tell me we aren’t eating here?” It was
really more of a statement than a question, but no amount of hunger could make
me eat there. He proceeded to drive
through the parking lot and said, “No, I’m turning around. We’re going back to that church.” Now let me tell you that patience is not one
of Will’s virtues, and he was on the verge of hangry. So for him to turn around to take me to that
church was a very unexpected, but sincere gesture. I
know that God tapped him on the shoulder.
We pulled into that church parking lot and it was even more spectacular
than I dreamed. I wanted to take
pictures of it, so we got out of the car.
I looked at the historical marker that was placed (I knew it was old)
and couldn’t believe my eyes when I saw the name of the church…Guardian Angel
Catholic Church. There was a beautiful Guardian angel statue
and I knew in that instance God had once again given me a sign. He answered my prayers, but not with some
little sign. This time He hit me on the
head with it. As if he was saying,
“Cathleen, listen. Your hope isn’t in a
trial or a drug, but it’s in me. Look at
all the things I did to make you see that.
I used WAZE (yes, even God is tech savvy) to re-route you. I made sure you saw this church. I tapped Will on the shoulder and made him
turn around, and I made sure you saw Guardian Angel Catholic Church.” And, for good measure, when Will and I got
in the car, you’ll never believe the first song on the radio…”Everything’s
Gonna Be Alright.” Maybe Kenny Chesney
wasn’t a liar after all J ‘Nobody’s
gotta worry ‘bout nothin’, don’t go hittin’ that panic button; There ain’t no
doubt, it’s gonna work out.’ Here’s
your sign…
Guardian Angels seemed to be placing their imprint on my
life in an ever peculiar way after that point, just as Ladybugs do(if you know
me, you understand). My mom was shopping and looked down and saw a
charm bracelet with angels on it. Of
course she had to buy it. Molly got the
part of the Angel soloist for her dance company’s Nutcracker spectacular. It wasn’t necessarily the part she wanted, albeit one of the major solos, but it was the
part I needed to see her do. Watching
her onstage with those angel wings took my breath away. Here’s
your sign…
Now I couldn’t have found that church again if I tried, but
once again, a few weeks later, I was heading back from Houston with my mom
after a PET scan and we used WAZE again to navigate us. Of course, I had told her about the church
and my prayer. Once again I didn’t
recognize our route…it was definitely not the same route Will and I had taken
the last trip home. But about an hour
in, I felt like I was having déjà vu, and then in the distance I saw that
church! Anxiety from another long day of tests, turned to
excitement. My mom and I stopped and
walked around. We walked across the
drive to a bunch of large crosses. It
was a park made up of the Stations of the Cross. I took more pictures and I tugged at the
front door of the church, hoping to go in, hoping to be able to pray inside,
but it was locked. So we moved on, with
a peace and a joy surrounding us. Here’s
your sign…
The next day Will and I drove back for my consultation with
Dr. Phan, the radiation oncologist running the SBRT protocol. We
were sitting in the near empty waiting room when the nurse came out and called
for McBurney. Will and I stood up. And so did the only other couple in the
waiting room. We all looked at each other
completely confused, and the nurse said Elizabeth McBurney. Elizabeth?
What? I have never met another
McBurney that wasn’t family. Will had
heard them talking about Proton Therapy.
When we realized what was happening, I had the urge to give her a hug,
and give her my Alliance For Proton Therapy Access card. We chatted real
briefly before she headed into her appointment.
Not only was it strange to meet another McBurney in the waiting room,
but the fact that it was the same day, same appointment time, with the same
doctor. Here’s your sign…
Dr. Phan was very excited about the possibility of treating
me with the SBRT protocol. He didn’t
sugar coat the treatments. He was very
honest that the goal would be to stop progression of the disease; that would
be what dictates success. Of the
140 cases he treated with this protocol, there was an 80% control rate. Of course, he was hopeful it would shrink the
tumor, but didn’t want me to put all my apples in that basket. I asked him about potential harm to my facial
structure, and he was honest that there is a possibility of damage that would
require major reconstructive surgery. I asked him if we could wait until Dr.
Glisson’s clinical trial was available, and only do SBRT if that didn’t
work. But the answer was NO again. He wouldn’t be able to do SBRT on my tumor if
it grew another 25%. Was that a chance I
was willing to take, for a treatment that wasn’t even available yet? NO. I
told him that I wanted to talk to Dr. Glisson and Dr. Hanna again before
agreeing to the treatment. He scheduled
an appointment for a mask fitting just to get it on the books, and they also
got me those appointments with my medical team, that would help me decide if
this was the right thing to do.
I was so happy to get an email from Elizabeth McBurney on 9/2. The similarities and coincidences continued
to present themselves. Elizabeth would
also be treated for a tumor in her jaw, using SBRT and would be getting her
mask fitting on 9/20, the same day that Dr. Phan scheduled my appointment. When I responded to her email I told her
about my family, as she had shared about hers.
I told her Meghan was a sophomore at the University of Arkansas and that
Molly was a sophomore in High School and a dancer. The story gets stranger though, when before I
even got a reply from Elizabeth, Meghan texted me a picture of an Instagram
message she had gotten. It was from a
girl, Morgan, who told her that her grandmother (Elizabeth) and Meghan’s mom
(me) met at MD Anderson and both have cancer in their jaw and are being treated
by the same doctor. And, she too happens
to go to the University of Arkansas!!
Morgan found Meghan’s profile based on what I told Elizabeth. I hadn’t even told Meghan about Elizabeth
yet! They ended up meeting for coffee too. What a small world. Here’s your sign…
I met with Dr. Glisson and Dr. Hanna the following week,
who both concurred that right now, the SBRT protocol was my only real choice
for treatment and control. Dr. Glisson’s
trial was still being written and it wouldn’t be smart to wait. She would recommend Cisplatin (chemo)
concurrent with the SBRT to help weaken the cells (chemo alone will not kill my cancer). Cisplatin is the same chemo I had during my
proton treatment 5 years earlier. Dr.
Hanna put me at ease saying that he could “put humpty dumpty back together
again.” if that was necessary. He explained the reconstruction
and how it would work. He said it’s an
easy surgery for him, but a difficult surgery for the recipient (which
hopefully won’t be me). When I asked if
he thought the treatment was worth the risk, he replied with a resounding
“Yes.” I had the answers I needed…I
would proceed with the protocol. Here's your sign...
September 20th came, and another early morning
drive to Houston was on the docket. I
was scheduled for bloodwork before getting my mask fitting. As we entered Garage 10, I was checking my
email and I once again heard the song, “Everything’s Gonna Be Alright.” The email I was reading was from my old
friend Teresa(who was my maid of honor way back when). Every year she walks for the City of Hope to
raise money for cancer research. She was
asking for support, and wrote about her father who passed away from cancer, her
sister-in-law, and me. She was walking
for us. I was humbled and felt a tear roll down my cheek. Here's your sign. Then after they pricked my arm and we walked
out of the main lab, a lady approached me and handed me a scripture page. She said she was a Missionary for Jesus. She was sitting on a bench and didn’t
approach anyone else. Here’s your sign…
I knew that Elizabeth would be at MDA that day, but I
didn’t realize our mask fittings were one after the other. Rose, the nurse, asked if we had met ‘the
other’ McBurneys. They happened to be in
the room across the hall at the same time.
I laughed when I saw the NAME ALERT on the door. We said hello and gave each other hugs and
went on with our appointments. We bumped into Sonny, Elizabeth's husband, in
the proton waiting room. When Elizabeth
came out, it was my turn next. The mask
fitting was definitely more constricting than I remembered, and I wasn’t
convinced when Chris, the med student, called it a weird spa day. Weird, yes…spa day was a stretch. He had already helped with Elizabeth’s mask
and said to me, “All the McBurney’s seem nice.”
I answered, “So far so good.” He
laughed and noted that Elizabeth said the exact same thing. Gotta love a McBurney J
Elizabeth and Sonny would become very special to us over
the course of treatment. While Elizabeth
only had 3 treatments compared to my 5, we enjoyed learning more about each
other and bonding over this strange journey that would bring us together. The day of our second radiation treatment,
she brought me a “Happy Bag” with a HOPE cross and a journal (very fitting for
me J). The journal cover said, “I’m Fine. You’re Fine.
We’re all fine.” Love it. It's a saying we have said to each other multiple times since. Our treatments were always one after the
other, and I was so happy that I was able to watch her ring the gong after her
third treatment. When I finally rang my
gong after my last treatment, I sent her a picture of that moment. We had gone through it together, and I wanted
her to feel a part of it on that day too.
It’s odd the way God brings people together. I know this was not a coincidence. Here’s your sign…
Treatment itself was pretty uneventful, so I won’t bore you
with those details…just radiation, chemo, radiation, radiation, radiation,
chemo, radiation. Although, I did cause a frenzy during my first chemo,
with my Buc-ee’s theme (doesn’t everybody have themed chemos??). The night before I left for Houston, Chris
and Robert came by to see me and brought me an entire gift bag of Buc-ee’s
goodies. If you’ve read my story from
the beginning you know what a special place Buc-ee’s holds for me. It’s the good we experience between the bad
on our trips to Houston. All my closest
friends get my obsession; so much so that Chris and Robert drove 45 minutes to
the Bastrop Buc-ee’s at 10pm to make me smile.
And, it worked. I got a Buc-ee’s
t-shirt (the leopard print boasted his wild side), a Buc-ee’s puppet (everyone
should have one), socks (leopard, that say “Buc-ee is my spirit animal”),
bumper sticker and more. It made me
happy and I have to admit, I kind of liked the looks of curiosity and
judgment. My second chemo was dubbed an Arkansas theme,
with my Razorback shirt and blanket (which I stole from Meghan). Of course, Buc-ee was still there, hanging on
the IV rack, ready to kick some cancer’s ass.
And when I rang that radiation gong I mentioned before, Buc-ee was right
there ringing it with me.
Now, three months since that first treatment, I prepare for
my follow up appointments, hoping and praying that the treatment has stopped
the tumor and that nothing has spread. I
don’t want to play Whack A Mole anymore.
I’m tired. And during my last acupuncture, I walked in a
little weary from all the pain, looking for more relief. I told Gayl how I felt better, both
physically and emotionally since that last treatment (that I mentioned at the
start of this entry) when I asked for a sign and saw God’s healing rain outside
that window. I told her I started
writing again, and how that helped clear my head and form a release for my
emotions. What she told me next would
bring a tear to both my eyes and hers.
When I walked into the room, she said she saw a white light surrounding
me, which she believed to be an angel.
She had never seen it over me before, but it was at that moment that she
believed I’d truly be OK. My guardian
angel. And if that’s not enough, when I
told my mom that story later in the day, she told me this: When my mother in
law was in the hospital a few months back after losing consciousness (due to
her COPD), I was there at the foot of the bed.
When she first woke up and saw me, she saw a white light surrounding
me. My guardian angel? Yes. I
get it. Here’s your sign…
Addendum:
January 9, 2019: An
early morning at MDA today but happy to see Elizabeth and Sonny again! We had a chance to meet their son and
daughter in law later in the day as well which was great. Fun to meet even more McBurneys J We spent the better part of 10 hours running
from appointment to appointment(I closed all my rings…Apple watch folks get it
;)) , and I’m happy to report that my tumor has shrunk. Results were substantially better than Dr.
Phan expected for my three month follow up.
There is no sign of any new metastasis. Our prayers were answered yet again. You can’t imagine the relief and gratitude I feel right now: Relief that my family can breathe easier
knowing that God is once again performing miracles in my life. Gratitude for
God’s amazing grace and the multitude of people around the world praying for me
and my family over the last 5 ½ years. I
WILL be cancer free, whether they ever use those words or not. God is good…all the time. Here’s
your sign.
