Tuesday, July 26, 2016

Same Name, Different River

A Greek philosopher, Heraclitus, once said, “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.”  The current is constantly changing direction, the river’s edge and floor are altered with every ebb and flow.  The water is clear and you can see the life flowing inside of it, until a storm comes and makes the water murky, hiding the life that you’re sure was there before.  Standing on the river’s edge, as you step in, realize that no matter how much it looks the same to you on the outside, it has changed.

The same is true of cancer.  A cancer by any other name is not the same.  Neither can you get the same cancer twice.  On May 2nd, 2013 I was diagnosed with Stage IV, inoperable Adenoid Cystic Carcinoma, with a tumor the size of a large plum invading my sinus cavity.  I was about to be thrown into a river that I didn’t feel like swimming.  It had what appeared to be Class 4 rapids, and I was told to hold on for dear life.  I put my helmet on (otherwise known as my radiation mask), got my hydration pack (otherwise known as my IV) and held on for dear life as I roared down the polluted river (otherwise known as chemo).

Much to my surprise, when I jumped in, I was caught in the arms of my loving savior.  I didn’t have to hold my breath any longer.   I didn’t have to do it alone.   The fear that I felt when I was thrown into the river and told “You have cancer,” was now replaced with faith the He would carry me through it.  The murky waters, filled with chemo and radiation, were slowly clearing as treatment progressed to show the life that I still had inside of me. The tumor was shrinking and my faith was growing.   The ups and downs of treatment may have changed the landscape of my life, just like the flowing water changed the river’s edge, but trusting in His power to heal gave me new life. 

No longer did the Class 4 rapids (or Stage IV diagnosis) scare me.  HE was my raft, and as I rode the waves, my eyes were opened to see the beauty around me.   The journey down the river wasn’t easy, but it was a trip worth taking.  The landscape of my life, the people around me, my purpose, my passion, and even my routines were all changed because of ACC.  He used cancer to change me from the inside out.  Fear had been replaced with faith.  Pain had been replaced with joy.  Boredom had been replaced with purpose.  I had been given a chance at life once more, and it was to be used for His glory.

May 2nd, 2014 is when my passion was ignited and turned into purpose.  That was the one year anniversary of my diagnosis, and also the day I discovered Relay For Life of Lake Travis.  I took over a dying event and gave it new life, just like He did for me.  The next two years I spent as Event Chair, where our events raised almost $200,000 for The American Cancer Society.  My story was noticed and I am honored to also be a Hero of Hope and MD Anderson Proton Therapy Advocacy Alliance spokesperson, sharing my story of hope and faith with others facing cancer.   
January 23rd, 2015 I was told that I had no evidence of disease.  The river currents were steady and calm, the waters clear and life was flowing through it.  I had beaten the odds.  I got off the raft and began to go about my life.  I was alive and determined to live my best life.   Until…

March 29th, 2016 was the day I heard three little words.  They weren’t those same nastythree little words I heard on May 2nd, 2013.  You know the ones, “You have cancer.”  This time the response was the same, but the words were different.  I got the call from my doctor, who simply said, “It’s Adenoid Cystic.”   I had been thrown in the river once more.  This river had the same name, but looked totally different.  Rather than an inoperable, plum size tumor in my head, it was an operable 7.5 cm tumor in my liver (no fruit comparisons were made this time).   Lack of mobility in my jaw (from my first tumor) would surely complicate anesthesia.  Suddenly the fear that I had after my first (much more complicated and dire) diagnosis, had returned with a vengeance.   This time I felt like I was drowning.

A relatively uncomplicated surgery (other than the whole problem with keeping me alive and breathing), suddenly scared me.  The momentary fears (like missing important milestones in my daughter’s lives) that I experienced the first time, were consuming me.  I wondered if I could once again beat Adenoid Cystic Carcinoma.  I was afraid of dying on the operating table.  I contemplated writing life letters to my daughters.  Birthday cards to closest friends (Terry and Shelly) were filled with heartfelt sentiments that they needed to hear in case they were the last ones I would send.  I was worried.  Had my purpose been fulfilled to His completion?

I felt myself sinking in the murky waters.  I could feel the silt of the river’s floor.  I couldn’t breathe.   I didn’t feel his arms catching me…until I did.  Jeremiah 29:13  “You will seek me and find me when you seek me with all your heart.”  I had an “ a-ha” moment.  I had let life interrupt my relationship with my Lord.  I didn’t understand why I was so scared, until I realized that I had gotten out of step with Him.  Bible study fell to the way side, replaced by other things, which I thought were important and what He wanted me to do.  But I let my need to do things, interrupt His need to do things in my life.  I hadn’t been seeking Him out in my daily life, so I left an opening for fear and anxiety to take over.  Suddenly, once I realized the reason for my fear, the verses I clung so dearly to the first time, started to pop into my head, and I felt Him slowly lifting me up out of the water, breathing new life into me once more. 

Philippians 4:13  I can do all things through Christ who strengthens me

Philippians 4:6-7 Do not be anxious about anything, but in everything, through prayer and supplication, with thanksgiving, present your requests to God.  And the peace that transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Hebrews 11:1  Now faith is being sure of what we hope for and certain of what we do not see. 

May 2nd, 2016 was the 3 year anniversary of my initial diagnosis.  It was the two year anniversary of my first Relay For Life.  It is my best friend’s birthday.  And May 2nd, 2016 was pre-op for my May 9th liver surgery.    God’s hand is clearly playing out in my life and these dates are no coincidence.    It was before my pre-op that I prayed for the Lord to take my fear, and it was during one of those appointments that I literally felt that fear leave my body.   

I didn’t write those letters to my daughters.  There was no need now.  I knew that He had me in His arms.  I would ride out these currents with my head above the water.  No helmet, no hydration pack. No fear, no anxiety.   I came out of surgery with flying colors. The 7.5” tumor was completely removed.   I have recovered beyond expectation once more.  The lymph nodes were clear.  Ten weeks out from surgery and you would never know, short of the 7” scar (part of my new landscape) that is disappearing just like my first tumor did.  Last week I was once again told I had no evidence of disease. 

Adenoid Cystic Carcinoma is my river.  Twice I’ve been diagnosed with Stage IV ACC and twice I rode the rapids and came out on the other side.  Three years ago tomorrow I completed treatment for my first bout with cancer.  That cancer, while it had the same name, was very different.  I was also very different.  But one thing that never changed and never faltered is His place in my journey. He was always there, guiding me, even when I didn’t know it; even through all the rapids.   Yes, it’s true.  “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.” 

-Cathleen McBurney 7/25/16

NOTE:  Three years ago today 7/26/16, I completed my last treatment for my first bout with cancer.  10 weeks ago yesterday, at the time of writing this blog, I had my surgery for my second bout with cancer.  

Tuesday, May 19, 2015

Country Road, Take Me Home (January 23, 2015)

I had to ask Dr. Hanna in several different ways if what I was hearing was true.  The words rolled off his tongue as if they were a familiar chorus in my country song life, but the tune was new.  Just minutes earlier his resident, Ashton, told me that the scans “looked good”.  But what did that mean?   I had heard that once before, but this time there was something different in the delivery.  Last time the words “looked good” were delivered a bit flat, and simply meant that the tumor continued to shrink, but was still there.  This time I heard a change in the tune, and I craved to hear more.   I listened closely, with a bit of reverence, and even more anticipation, wondering if I would leave that room having learned a new ending to that song.  I turned up the volume and the emotions began to flood my eyes, as I heard the beautiful (yet ever so clinical) truth that I show “no evidence of tumor.”  Of course, without hearing the words “cancer free” I asked to hear more.  Chorus, repeat.

“Does that mean it’s gone?” I asked with a glimmer of hope in my eyes disguised as tears.  Dr. Hanna smiled and with a hint of jubilation and a wink of the eye said, “There is no evidence of tumor.”  Psalm 25:5  You are the God who saves me.  All day long I put my hope in you.

“So that means I’m cancer free?” I asked again, and he shook his head a certain yes, without ever saying the words.  At that point I knew that the tumor that had so violently reared its ugly head (in my certainly more attractive one) was no longer taking residence in my body…EVICTED!  I looked at my mom who clearly was trying to maintain some semblance of composure, but the quiver of her lip and the tears in her eyes said what the lips couldn’t speak. Dr. Hanna went on to tell me, with the usual audience of doctors from around the world in tow (this time from Italy and Pakistan), that this wasn’t the outcome he expected when he first saw me just a year and 9 months ago.  “You’re a fighter.  But more than that you are a winner,” he told me.  I told him about my efforts to give back now.  I told him about Relay For Life and how I was led to be the Event chairperson.  I told him about being chosen as a Hero of Hope for the American Cancer Society.   He told me with such sincerity and joy, that he was so proud of me.  My world renowned doctor who helped make the plan that helped save my life was proud of ME.  For once, words escaped me.

When I walked out of my appointment in the Head & Neck department, joy was palpable.  You could probably see my smile beaming in the reflection of the windows, in the twinkle of my eyes and the step in my toes (a sound byte from Kool and the Gang’s ‘Celebrate’ just jingled in my ears).  But part of me slowly began to pull back the emotion just a bit, realizing that others in that waiting room may have just heard for the first time that they had cancer, or that it had come back.  It was a momentary internal tug of war.  But maybe, just maybe, they would share the joy with me and see the hope that is out there if you are willing to take hold of it.  I continued with a smile on my face past the waiting room back to elevator B, which I had ridden so many times up to the 10th floor in anticipation.  This time the elevator music was different, like the tune I had heard just minutes before. Now I was able to ride it down to the 1st floor with a clear head (literally) for the first time in years.  So, with all my scans completed the day before, and appointments with pain management out of the way as well, I was free to exit the building for the first time as not only a survivor, but cancer free.

I should’ve never questioned the outcome of the day, given that it started with a trip to my favorite little restaurant, Sweet Paris Crepes, where I feasted on an apple crème brulee crepe.   I’ve been dreaming of this since my girlfriends came to visit when I was in treatment and we discovered this little gem of a place in Rice Village.  I had wanted to find my way back, but the grueling schedule was continually denying me of my unalienable right to sweet apple goodness.  As we walked from the restaurant back to the car, I realized that we were passing the little jewelry store where Chris & Gina bought me the boot necklace which I wore every day for the rest of my treatment and that day as well.  The boot is my symbol, used since the beginning when I had the famous Kick Cancer’s Ass party.  It’s been my cancer kicking mantra.  I should’ve known then, as I passed that store, it was to be the day I would hear that wonderful news.  It was no coincidence that I had kicked cancer’s ass, while wearing that necklace, no less.

We had gotten out of MDA (MD Anderson) a little earlier than normal and the road traveled led me past the apartment where we lived for 2 months that fateful summer of 2013, when life became more than just living, but surviving (cue Donna Summer’s ‘I Will Survive’). It’s strange to say that I don’t have any negative feelings about Houston or the old apartment. I don’t cringe when I think about my treatment or feel like I can’t take another step into that hospital again.  You might think it odd, but I remember it all with the slightest bit of nostalgia.  It isn’t a place where negative things happened.  It was a place where the most positive thing happened…my life was saved.  The drive to Houston and even passing Plum Creek serve as reminders of the miracles that happened in my life and my family’s life.

When we lived in the apartment, a visit to the Ross Store just across the street would bring me joy. Trust me, when you’re doing chemo and daily radiation, you take joy where you can get it.  So, as the beginning of my celebration day, Nana and I made one more stop at Ross to see what kind of treasure I could find to treat myself.  After all, didn’t I deserve a gift?!  I know what you’re thinking…but yes, you CAN find treasures at Ross.  OK, maybe not a Tiffany necklace, but maybe something interesting.  Well, unfortunately for me, I only found ‘treasures’ for the girls.  But I know where my real treasure is.  Matthew 6:20-21 But store up for yourselves treasures in heaven, where neither moth nor rust destroys, and where thieves do not break in or steal; for where your treasure is, there your heart will be also.

So, off we went, battling the Friday afternoon Houston traffic up the 605 towards the 10, the road that leads to Buc-ees(you didn’t think we could pass by Buc-ees without stopping did you?).  Talk about pure unadulterated pleasure!  Where else can you get everything from snacks to deer feeders, turquoise jewelry to housewares?  Maybe Buc-ees would be where my treasure lie that day!  Convinced that it was, I searched and searched for the perfect piece of memorabilia that would commemorate this special moment in the perfect way!  The pajama bottoms with the smiling beaver wouldn’t do.  The refrigerator magnet wasn’t quite it either.  But low and behold, like a star shining from the top shelf, was an oversized Buc-ees wine glass calling my name.  We would certainly celebrate that night with a glance of wine, and Buc-ee gives me joy, so it was a match made in Heaven.  Well, not literally, but you get my drift. 

While I was driving home, I was a 12 year old girl (with a driver’s license) in a 45 year old woman’s body.   I was taking selfies with Hottie the Hedgehog (my Cancer Plum Sucks mascot ) and my baby Buc-ee keychain.  I was giddy with excitement to make my way through the list of phone calls that had to be made before a Facebook post could be posted.  But the incredible news would have to wait for the rest of the world, until I could get home and into the arms of my precious girls to tell them first. 

I was happy that my mom was there to share that moment with me (getting the good news that is, not necessarily the Buc-ee’s part).   But a huge part of me was sad that Will, who has been there for nearly every other appointment, wasn’t there to experience it with me.  But a change in scheduling made it impossible with his work schedule.  He truly deserved that moment as much as I did.  He endured as much as I did.   The cancer was as much a part of him as it was of me.  But now that weight has been lifted…that burden released and prayers have been answered.  Psalm 65:5 You faithfully answer our prayers with awesome deeds, O God.

The radio was playing an assortment of familiar country tunes from the 90s and now (sounds like a radio tagline, doesn’t it?).  When I heard them say something about a new Garth Brooks song, I was excited, having been a pretty big Garth fan in the past.  “If Tomorrow Never Comes” was always one of the songs that Will and I claimed as our own.  We wanted to use it in our wedding as the first dance, but thought it sounded a little morbid for a wedding (talking about tomorrow never coming and all).  But now I understand the truth behind the words and it never rang truer in our relationship than the past two years.  We are not guaranteed tomorrow. 

If tomorrow never comes, will she know how much I loved her?  Did I try in every way, to show her every day that she’s my only one.  And if my time on earth were through, and she must face this world without me, is the love I gave her in the past, going to be enough to last, if tomorrow never comes?  Garth finishes that song with these words, “So tell that someone that you love, just what you’re thinking of.  If tomorrow never comes.” 

I couldn’t believe my ears when the new Garth song was called ‘Mom’.  Here I was in the car with my mom, having just received this amazing news together, and God placed this song on the radio for us to hear for the first time.  In the lyrics, God is telling an unborn child, who doesn’t want to leave HIS side, about its mother on earth who is waiting for their arrival.  My mom, who gave birth to me 45 years ago, was able to be a part of my ‘re-birth’ through this experience.  We both teared up as we heard these words:

You’ll never have a better friend, or a warmer touch to tuck you in.  She’ll kiss your bruises, your bumps and scrapes, and anytime you hurt her heart’s gonna break.  So hush now baby don’t you cry.  Cause there’s someone down there waiting, whose only goal in life, is making sure you’re always gonna be alright.  A loving angel tender, tough and strong.  It’s almost time to go and meet your mom.  

It was a special moment, and that song brought tears to my eyes for my mom who had to watch her baby suffer through all this.  But she also got to witness through me the strength and perseverance that only happens with Christ by your side.  That song also brought tears to my eyes thinking about my own beautiful girls, and how truly blessed I am that God chose ME to be their mother, and that I would get to continue being their mother for a very long time. They are my gift and my song.  Jeremiah 1:5  Before I made you in your mother’s womb, I knew you.

That night, as we rolled into Lakeway, we planned a celebratory meal at Mandola’s with the family that was in town. Their gnocci with alfredo sauce, peas, mushrooms and prosciutto is to die for.  Or, in this case to live for!  So, that would be my first cancer free meal!  My parents, the girls (who I hugged with all my might) and my brother all shared in my joy that night as we ate and drank and toasted my good news.  Proverbs 15:15  For the happy heart, life is a continual feast.  When we got home, I checked the mail and had a package from my cousin Bridget, which was full of funny little things, including several little ladybug items.  I could barely believe my eyes.  What a precious sign from God.  She was with me on this special day and so was my Grandpa ;)

I closed my eyes that night, with a peace about me.  It was the peace that surpasses all understanding.  It was the same peace that got me through the storm. Philippians 4:7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.  At that moment, in my head,  I heard the words of the song that made me cry in that first worship service after my diagnosis, and every one since.  “Blessed Be Your Name” – Matt Redman

Blessed be your name, when the sun’s shining down on me
When the World’s all as it should be, Blessed be your name.
Blessed by your name, on the road marked with suffering
Though there’s pain in the offering, Blessed be your name.

Blessed, for sure!

Sunday, January 4, 2015

Never Put Anything Up Your Nose… December 2014

“Don’t put that up your nose!!”  I don’t know if it’s my mom’s voice I imagine or some TV mom screeching out the fact that nothing good comes out of putting something up your nose.  We’ve all heard the story of some goofy little boy putting a carrot or maybe even a marble into the deep, darkness of his nostrils and ending up with a trip to the ER.  Being that I was a perfect little girl (OK, maybe not perfect, but certainly not a boy) I never felt the urge to try this.  But somehow, as a 45 year old woman I thought it would be a good idea.  Now don’t get me wrong.  I didn’t just think to myself, “Oh fun, let’s put something up my nose.”  And when I did, it certainly wasn’t a carrot or a marble.

The day I put a wadded up piece of paper towel and stuffed it up my nose, it wasn’t in order to make someone laugh, but the story is actually kind of funny (in retrospect, of course).  I did this seemingly ridiculous act out of necessity.  As the cancer continues to regress, the hole in my sinus cavity continues to grow larger leaving me without much of my palate.  Oh goody.   Well, actually, that IS good and definitely worth celebrating. Psalm 34:16  Many are the afflictions of the righteous, but the LORD delivers him out of them all.  It is great news that the cancer is shrinking, but that leaves me with complications…let’s just say leakage.  Even as I write this now (at 5:30am) the coffee drips in a slow stream out of my nose.  So, for a moment I have to put down the pen in my right hand (because I’m certainly not putting down the coffee in my left) and wipe the dripping coffee from my upper lip.  My own personal drip percolator of sorts (did I just cross some sort of line with that comment?!)! 

OK, back to my point.  The moment I decided to stick a wad of paper towel up my nose was when Molly and I were sitting at our counter bar eating dinner.  The drainage from my nose is always worse when I’m eating or drinking.    Unfortunately for Molly who sat beside me, I was eating broccoli.  Now this is unfortunate for several reasons, including the fact that it smells horrible and she hates it.  But the most unfortunate reason is that my nose began dripping yet another slow, but steady stream, this time in a broccoli green (gross, right?).  Welcome to my life J  Well, my precious girls have become very accustomed to the fact that my nose dripping is just a fact of life, and they ever so sweetly swipe their finger across their lip as a sign to me to wipe it off…our own little secret code.  You see, the nerve damage caused by the tumor and subsequent treatments left me with limited feeling on the right side of my face, so most of the time I don’t even realize it’s dripping.  That is why I am single handedly keeping Kleenex in business, because I always have to have something in my hand to wipe it away.  

Interesting thought that is.  Makes me sometimes wish I could just wipe it all away.  The cancer, the chemo, the radiation, the pain, the side effects of it all, and just go back.  But I can’t wipe this away, and honestly I really wouldn’t anyways.  I was faced with difficulties and continue to be, but that was God’s plan for me, and that my friends, makes it perfect.  In my moments of weakness and frustration, I can almost see God motioning to me with the whisper of the wind, to wipe the rest of it away.  To wipe away the doubt and the fear and frustration and to know that these are momentary afflictions that lead to eternal glory.  Matthew 10:27  What I tell you now in the darkness, shout abroad when daybreak comes. What I whisper in your ear, shout from the housetops for all to hear!

But for that moment all that I was wiping away was broccoli.  So,  rather than having to wipe after each bite, I decided that I could eat more freely, without having to deal with leakage, if I had a semi permanent solution (the aforementioned wad).  And I have to say that for a while, it was working well.  The moment it all went bad was when Molly motioned once more, and I realized that my solution was no longer effective.  I went to pull it out (with tweezers, of course) and discovered with shock that it wasn’t there.  I had turned into that panicked little boy with the marble up his nose, in the form of a 45 year old crazy lady with a wad of paper towel lost into the sinus abyss.  I could feel it stuck somewhere between my nose and throat.  Did I try to blow it out or suck it in?  Unsure of where it could end up and what kind of problems it could cause, I instantly imagined the embarrassment of trying to explain this to an ER doctor.  Luckily, calmer heads prevail in my household, and Will said that we should call Charlie.  You know Charlie.  My angel in the form of a dentist.  He is familiar with my condition and could give me advice.  So we called him on his cell phone and left a message.  He called back almost immediately, and told me to try a neti pot.  It wasn’t until that didn’t work that he called me back again and said he consulted with his friend, a pulmonologist I believe, that he was presently dining with.  Oh no, sorry, Charlie (remember the tuna commercials??). Keep in mind that last year he came to my rescue on both Christmas Eve and New Year’s Eve.  Now I’m interrupting his dinner too…over something so stupid.  Luckily for me, he didn’t care one bit. 1 Peter 4:11  Do you have the gift of helping others? Do it with all the strength and energy that God supplies. Then everything you do will bring glory to God through Jesus Christ. All glory and power to him forever and ever! Amen.  They both concurred that if I wasn’t able to get it out, that it could wait until I saw my ENT.  So, with that in mind, we just called the ENT on duty and explained my situation.  His response was no different and with that I decided to relax and resume with the continuous tissue/nose connection.  As I got up to go to bed, I heard Will ask, “What is this?”  The faint green color gave it away.  It was the culprit we had been looking for up my nose.  On the ground.  We still don’t know if it fell out before all this happened or after.  But the moral of the story remains the same.  Nothing good comes out of putting something up your nose!

Monday, May 26, 2014

Stage 4 - No More!

Stage 4 - No More
Stage 4…who knew?!  It’s one of those questions you never really want to know the answer to, so I never asked…and my doctors never said.  Until now.   People always want to know.  So, I finally asked.  Not that it matters.  It’s irrelevant now.  But it’s still a shock to the system to hear.   How would knowing that at the beginning have affected my psyche?  Would I have been more frightened or felt completely helpless?  I don’t know.  I hope not.  I hope that my faith and resulting strength would have been no different given that information.  But how would my family have reacted?  I don’t know. But I’m guessing not well.  So, now that I have this information what do I do?  First I thank God that my doctors never mentioned this little ditty to me.  Psalm 68:19  Praise be to the Lord, to God our Savior, who daily bears our burdens.  I knew from the get-go that I didn’t want to delve too deeply into my diagnosis.  I didn’t want to Google it…no WebMD for me (Dad, stop Googling!).  I knew all I needed to know.  My cancer is extremely rare, and it was huge. 

So, now what do I do?  I praise all the more loudly as I realize the miracle is even greater than I first thought.  Psalm 71:14  As for me, I will always have hope; I will praise you more and more.  When Dr. Hanna informed me that my cancer had been stage 4, he explained to me the way tumors are staged (sorry if I go all scientific on you for a minute).  They are classified by T (tumor), N (lymph nodes) and M (metastasized).   Anything that has metastasized is automatically Stage 4.  Then there are staging for spreading to lymph nodes (1-3) and there are tumor classifications (1-4).  His exact words were, “Your tumor earned a 4 on its own merit.”  I love that quote.  I can’t explain why. Except that I’ve told you how competitive I can be…apparently my tumor is too.  It wasn’t going to settle for any average rating.  It was going to be the biggest, rarest tumor it could be.  I would expect nothing less.  Just like the 11mm kidney stone I had 3 years ago.   But just like my tumor that kidney stone miraculously disappeared (they couldn’t find it during surgery even though it was on the scans the day before?!)  Anyways, I digress.  My tumor earned a 4 based on its tremendous size (remember the large plum?), rare type of cancer, invasion of brain (that was news to me) and eye socket, base of skull, upper and lower jaw, trigeminal nerve and nasal cavity.  I think that’s all, as if that’s not enough. 

Dr. Hanna is a world renowned surgeon and oncologist, and head of the entire Head & Neck Department at MD Anderson.  He travels the world giving seminars and teaching.  Apparently so do I!  He told me, “You travel with me all over the world.”  I looked at him quizzically as he said this, not understanding what exactly he meant.  Apparently I’m quite a case study (not a head case though).  He takes my scans and talks about my case to other doctors.  I was in Taiwan a couple weeks ago.  I told him that was good, because it was probably the only way I would ever get there!  So, I’m like “Flat Stanley” visiting locations far and wide.  I joked that he needed to take pictures of my scans in each country he goes to.  Instead of Flat Stanley, I’m “Flat Scan-ley”.  LOL.  Sorry, I couldn’t help myself!  So, stating what seems to be the obvious at this point to me, he called me the “miracle girl” of the Head and Neck Department.  Once again, I’ve come full circle.  A year ago there were prayers circulating around the world for me, and now my scans travel the world as a result of those prayers.   So many miracles, even the esteemed Dr. Ehab Hanna recognizes them.  Job 5:9  He performs wonders that cannot be fathomed, miracles that cannot be counted.

So, I guess that leads me into the past week with scans, doctor appointments and results.  I think it must be clear by now that my appointments went extremely well!  I had appointments with dental oncology, radiation oncology, main oncology as well as both a PET CT and MRI.  Coming up on a year since treatment began, these scans and appointments would tell me a lot.   And, first things first…my PET CT showed that my tumor had almost all but disappeared, but there was still some ‘activity’ around the peripheral edge.  The radiologist concluded, as did both Dr. Hanna (who is usually more cautious, but was almost giddy) and Dr. Frank (who was his usual chipper self) that “most, if not all” of the activity appeared to be inflammation and not active cancer cells.  They still could not conclude with 100% certainty that there was no cancer, as the cancer and inflammation appear the same on the scans.  However, based on the location and presentation, they seem quite sure. The activity that is present has decreased since last time too.  And how could I almost forget to mention the even more important news that the cancer has not spread anywhere else either!  So, great news abounds! 

It was great to see Dr. Frank (my radiation oncologist) again.  It had been over 7 months since I last saw him and we had talked about my Gladiator “Comeback Event” that I would be doing this past November. Back at that last visit, I told him about Team “Cancer Plum Sucks” and he told me to bring him one of our team shirts.  So finally, at this visit, I got to present him the shirt.  He loved it.  It’s weird, but it’s like visiting an old friend…an old friend who saved your life.  He was thrilled with my progress and once again I had photos taken of the affected and treated areas (remember my ‘graduation’ photos?).  But this time there was no bald spot…only thick new hair that is also extremely curly.  It’s funny trying to tame the curls under the rest of my straight bangs!  This time there was no burned and scabbed over skin on the right side of my face and neck…only smooth, scar free skin that shows no evidence of treatment ever even taking place.  This time I could open my mouth wide enough for them to get pictures in the first place. This is the only visible evidence of my tumor…a large hole in the roof of my mouth (unseen to anyone but me, my doctors and dentist, or anyone who would like to look in my mouth…eww).  Yes, the changes are amazing.  I still have many challenges (prosthetic palate, loss of smell, loss of tastebuds, among other things), and things I will have to live with for the rest of my life, but I am so lucky…to just be.  To be alive.  To be healthy.  To be a mother.  To be a wife.  To be a daughter, a sister, a friend.  To just be.   It’s strange, because once again it’s come full circle.  I look like I used to look again, and another God-incidence (thanks Wendy and Christine for this new term to me!) is that I weighed exactly the same amount (to the ounce) that I weighed the very first time I got on the scale at Dr. Frank’s office (and NO, I’m not going to share that #).  How is that for strange?!  Full circle my friends, full circle.

It wouldn’t be a visit to MD Anderson unless my days were packed full, so I also saw Dr. Gidley, the ENT specialist that I saw when I first noticed the hearing loss.  You may remember that he gave me two options:  get a tube to drain it or pray for a miracle (which would require the eustachian tube to open on its own, which would be next to impossible).  Well, I think I mentioned in a previous post that my ear did clear up on its own.  But I wanted to have another hearing test (to prove it both to myself and them) as well as see the doctor.  When I called for the appointment they asked if everything was OK.  I said it was better than OK.  They didn’t understand why I wanted to see him then.  I couldn’t really explain it except to say that I wanted him to read the results of my new hearing test and compare the MRI from last time to this time, to see if the fluid really is gone or just hiding out somewhere waiting to attack some other day.  With hesitation, they scheduled me to see him.  I think they thought I was crazy (hey, no comments from the peanut gallery).   So, when I finally did get to see him, he was just a little dumbfounded.  He said that my hearing is completely normal now, where I had a previous 40db hearing loss.  This number doesn’t mean anything specific to me, not knowing the decibel range for good versus bad hearing.  But all I know is that I could hardly hear at all in that ear and now I can. The eustachian tube was opened, and there was no fluid in the ear (just a little in the mastoid bone behind the ear).  Where there had been irregular motion of the eardrum and nerve functions before, there now was none…everything was normal.  The only exception was my hearing at ultra high frequencies, which he said is pretty normal for most people…a few loud concerts could cause that (Bon Jovi ’87…rock on!)!  So, he had no real explanation as to why it cleared up, but we were happy to tell him that we go with the ‘Miracle Theory’.  He too seemed to agree.  Psalm 77:14  You are the God who performs miracles; you display your power among the peoples. 

Yes, it was a great trip to Houston!  Three long days of tests and doctors appointments, and lots and lots of waiting.  But I would wait as long as I had to for this amazing group of doctors.  We arrived home on Friday evening, May 16th, just in time to get gussied up for Molly’s ‘Platinum Ball’.  Yes, it was a time of celebration for Molly and the closing of her wonderful competitive dance season.  But it was also a time of celebration for me and my family and the closing of another chapter in the book of my life.   Stage 4 – no more.  Time to close that door!

Wednesday, May 21, 2014

Full Circle...no coincidence. (May 21, 2014)

What a year it's been.  I've come full circle.  Happy Anniversary to me.  As I write these words, I don’t think it’s possible to express the emotion I feel as I encounter for the first time the anniversary of the discovery of my tumor and subsequent cancer diagnosis.  I don’t think you can hear the sarcasm…it’s not a ‘happy’ anniversary.  And as I write that, I don’t think you can hear the confusion I’m feeling, because it actually is ‘happy’.  I’M HERE to write about it.  I’m feeling so many things that are hard to put into words, but I’ll give it a try!  It is a combination of reflection on the past year and grief.  It’s hard to recognize that the past year ever even occurred: the ups and downs; the trials and tribulations; the tests that strengthened my faith.  But it did.  With that reflection comes grief as well.  I feel like I’m mourning a part of me that is lost forever.  I’m mourning a part of my life and my children’s lives that we will never be able to get back.  But with that, I realize (and I hope my family does as well) that the Holy Spirit filled that empty space completely.  This was the journey I was supposed to take, not just for me, but for those around me as well.  And maybe one day my children will understand the reason they had to experience it…and maybe they won’t.  But it’s part of God’s perfect plan for their lives too. 

The past year I feel like I have been so strong…I had to be.  That strength was real.  It was necessary.  And let there be no doubt about where that came from.  God made me strong.  If I didn’t lean on the Lord for strength, I never could have made it through this with the tenacity and positivity that kept me going day after day.  But now, looking back and being on the flip side, I realize that the Lord is giving me permission to be weak.  I think I need that.  I think I’ve earned that.  I can grieve what has happened to me and my family.

I was weak and dropped to my knee when I was diagnosed.  I was strong and determined during treatment.  And now I feel weak (or maybe it’s just more lament) once more.  Everything comes full circle. 
It’s interesting how God can speak so clearly to you when you’re heart is opened and ready to accept it.  Ephesians 1:18-19  I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which He has called you, the riches of His glorious inheritance in the saints, and His incomparable great power for us who believe.  I don’t believe in coincidences anymore.  Coincidence is nothing more than God pointing out to you that He is with you and involved in every little detail of your life.  God has a hand in all of it, as you’ll see from my anniversary timeline that follows.

April 18th, 2013  Mom’s 70th birthday & painful attack that finally led me to neurologist

April 18th, 2014  Mom’s 71st birthday:  I’ll start off with saying right off the bat that the fact that this first anniversary (my Mom’s birthday too) falls on Good Friday is certainly not a coincidence as some might believe.  I know that God planned it this way.  The day started off with Molly and I bringing special donuts to ‘Nana’ (as my girls lovingly refer to her).  Later that day Molly and I went to see “Heaven is For Real”, which we had read together a few years ago.  It seemed fitting somehow on this day to see it.  I love seeing how much Molly loves the Lord already, and to help her nurture that is so special, even if it’s just by watching a movie together.  Later that night we had a birthday dinner celebration.  I never mentioned the anniversary of the attack and neither did anyone else.  There is no question that it was a big elephant in the room though.  I chose on that day, to celebrate the ‘Good’ on Good Friday.  The fact is that on this day thousands of years ago Jesus died on the cross for me (and you!) so that we would have eternal life…Heaven is most certainly for real.  On this same day a year ago a part of me died too, but thanks to Jesus I’ve been given a rebirth.  2 Peter 3:13  But according to his promise we are waiting for new heavens and a new earth in which righteousness dwell.    That, my friends, is something to celebrate.  My mother’s 71st birthday was something to celebrate.  Yes, this was a ‘Good Friday’ and I would leave it at that.

April 19th, 2014:  There is no doubt the toll this journey has taken on my kids.  As I tucked Molly into bed this eve, I noticed the look in her eyes before the tears even came.  It’s amazing how a mother instinctively knows when her child is in pain.  I remember my mother used to be able to see it in my eyes too, but I would tell her everything was fine and nothing was wrong.  Then I would go write.  Writing has always been my outlet and release when I was suffering.  Anyways, I asked her what was wrong, and just like I used to do, she said she was fine and nothing was wrong.  But I know her and didn’t want her to go to bed upset, so I didn’t let it go.  Upon further questioning (sounds like an interrogation, doesn’t it?) she finally said, “I just love you so much!  I don’t know what I would ever do without you!” BAM…my heart just broke in two.  With tears now billowing from her usually bright blue eyes and streaming down her china doll cheeks, the weakness I had felt over the last several days was gone.  God made me strong once again…for Molly, not for me.  I had to be her rock.   I asked her if she was worried about the cancer and my upcoming tests.  I told her that she didn’t need to worry.  I told her that God willing I was going to continue healing and we would not have to go back.  I made sure to say “God willing” to make sure she understood that if anything did happen again, that would too be part of God’s plan for me.  Psalm 139:16  All the days ordained for me were written in your book before one of them came to be.  But I assured her as well as I could.  It made me so sad to see her so distraught, but it also filled me up beyond measure to see that kind of Agape love.  John 13:34-35   A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another. By this all people will know that you are my disciples, if you have love for one another.”

April 25th, 2013The date of the MRI that showed a tumor the size of a large plum

April 25th, 2014:   Today, after years of talking about a ‘Girls’ trip to Vegas, we finally boarded a plane and headed out to Las Vegas.  We (myself and 9 other fabulous women!) booked this trip without much planning.  Our friend Kellie had a timeshare that we were going to use, and it was one of those ‘book it now or lose it’ deals.  So, without realizing the significance of this day, our trip was booked.  I later made the connection and thought it was pretty ironic that the same day I was heading to Vegas for a celebration, was the same day they found the tumor the year before.  But I knew that this was no coincidence.  Just like with my Mom’s birthday and Good Friday, God provided me with something good to wipe away the memory of the bad (even if only temporarily).   But God’s hand was so intricately placed in my every detail.  I realized that when I got my MRI results and that devastating news the year before, Will had been in Las Vegas.  He flew home from Vegas to be with me on April 25th, 2013.  I flew to Vegas to have fun on April 25th, 2014.  We had each made one leg of a round trip journey.  We had come full circle.  I was headed in the opposite direction.  Last year as Will headed eastward back home, my life was quickly headed south.  But this year as I headed West toward the bright lights of ‘Sin City’(see below J) our lives are now steadily headed up in the right direction, with the brightest light of Jesus Christ leading the way. ( Romans 8:1-2 Therefore, there is no condemnation for those who are in Christ Jesus, because through Christ Jesus the law of the Spirit of life set me free from the law of sin and death.)

April 29th, 2014: I don’t usually go to the mall at 8:00pm, but Meghan needed some new Nike shorts for athletic training and Spring football which started bright and early the next morning.  We made our way down Main Street (it sounds so Norman Rockwell, doesn’t it?) towards the sporting goods store.  I would tell you which one, but the name just ruins the whole Rockwell thing.  Anyways, as we drove down Main Street I noticed the American Cancer Society logo on a freestanding sign at the corner of God’s Superhighway and Coincidence Lane.  It was ever so small, but for some reason (God, duh) I saw it as I passed.  I asked Meghan if she saw what the sign said, but she didn’t, her phone captivating her attention as she posed for a Snap Chat selfie.  My attention prodded, I had to know what the sign said, so after a quick look in my rearview mirror, I backed up to see the sign.  First of all, when has traffic been nonexistent on Main Street?  Anyways, I saw the American Cancer Society ‘Relay for Life’ logo with the date of their upcoming event…May 2nd…three days away!  I had never heard about the event locally and was completely unaware they even did one in Lake Travis until that point.  I instantly knew that God had taken me there that night to read that sign (God even uses Nike shorts J).  I knew that God had cleared the street so I could back up to read it.  And I knew that it was no coincidence that the day of the Relay was exactly one year from the date of my diagnosis.  Full circle.   God provided me with something good yet once again, to wipe away the memory of the bad.  I immediately went on the ACS website and contacted their representative in charge of the race.  I pulled a team together and began fundraising.  My focus had become the positive.  Now I had the opportunity to fight cancer in a completely different way.  Romans 8:28  And we know that in all things God works for the good of those who love Him, who have been called according to his purpose.

May 2nd, 2013  - date of diagnosis with extremely rare Adenoid Cystic Carcinoma.

May 2nd, 2014:  The day had arrived. Relay day this year…D-Day last year.  One year ago I remember getting the call.  I answered the phone in my room and made my way to the hallway, where I would hear those three little words…You have cancer.  I remember just surrendering to the shock and fear, dropping into Will’s arms and sobbing uncontrollably.   James 4:10  Humble yourselves before the Lord and He will lift you up.  After the shock, I surrendered that day to the Lord.   But today I had come full circle once again.  With the help and support of my friends and family (special shout out to my brother Sean, the Rosko’s, Ginsbergs, McBurney’s, and Severances) who participated with me at the event and to those too numerous to name who contributed to the cause, I am so grateful.  It made me realize once again the amazing community of people God has surrounded me with.  In less than 72 hours, I had managed to raise more money than anyone else in the event, and our team came in second for overall fundraising.  For those of you that know me well, you certainly know that I am a competitor.  Once the donations started coming in I was obsessed with watching the meter rise and crushing my fundraising goal.  It’s always fun to win…especially when the prize is helping other people! 

We walked that night from 6pm until nearly midnight, with each lap symbolizing one more step in the right direction, and one more trip around the sun meaning another birthday for someone suffering from this horrible disease.  The relay allowed each of us to walk and rest as needed, each sharing in the burden of the journey.  Each part responsible.  1 Corinthians 12: 25  so that there should be no division in the body, but that its parts should have equal concern for each other.  As I went through treatment, it was a different sort of relay.  Each treatment was another lap, and each friend, doctor and family member was a participant in raising my spiritual and emotional funds.  That relay continues for me as I live life one step at a time, one scan at a time, one lap at a time, one birthday at a time.   For me, there have been days where I needed to rely on my ‘team’ to keep me going.  They were my parts.  There have been laps that I couldn’t walk, even when I had to, and I know that God carried me during those times.  I am a survivor.

There was a survivor lap which kicked off the Relay, and my dear friend Torri and I walked together, united in our pain, united in our growth, united in our faith and united in our desire to help others who have suffered with cancer.  Molly walked alongside me, and we held the banner which proudly boasted “Survivor”.  That is a label I am happy to own.  There was live music and I was honored that Meghan’s dear friend Hannah sang a song and dedicated it to me.  It was a beautiful tribute from a beautiful girl who we adore.  Hannah, Meghan and Katie all walked with us too.  It was so nice to have the support of three 15 year old girls who probably had other things they could have done that night…but they chose to be with me and to help with the cause. Katie's grandfather had just been diagnosed with cancer too, so it was a cause close to her too.  God is working in their lives too.  There were also games, including Tug of War.  I thought this fitting given the fact that life with cancer is just like it…you pull and you tug and you fight with all your strength.  Sometimes cancer fights back and when you have just a little slack in the line it tries to pull you down.  But given God’s strength in you, the Holy Spirit, it is possible to pull hard enough so that you win and leave cancer beaten and in the dirt.  That is what I plan on doing.  But I need to stay strong in the word.   Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.  (God is my steroid!)

The most emotional part of the evening was the Luminaria Ceremony.  People purchased luminarias and decorated them in honor of someone who is a survivor or in memory of someone lost to cancer.   As I put together the list of people I wanted to make bags for, I suddenly realized the prevalence of cancer in my family and among my friends.  It was a little overwhelming when the list kept growing.  Anyways, people were asked to stand behind a bag and pull out the glow sticks.  One group at a time, they were lit.  Survivors were asked to light them first.  I was brought to tears as I lit mine recognizing its significance.  Then it was family members who lost someone to cancer and family members affected by cancer.  I watched as I saw my husband and my kids light theirs and I was brought to more tears.  Then it was friends of cancer survivors or victims.  And I watched my friends who loved me through it all light theirs too.  One by one everyone was holding a light which we placed in the bags creating a beautiful landscape lit with the light of hope and remembrance, fueled by the light of Christ.  Romans 15:13  May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.  I couldn’t help but be moved by the father and his two young sons that were beside us, who lost their wife and mother to cancer.  I just pray for them and thank God that my husband and children will hopefully never have to stand beside a luminaria bag without me and feel the loss that I saw in that man’s eyes.  That is why I am going to get much more involved next year…more to come on that amazing story!

Life has come full circle for me.  There is no such thing as coincidence.  Most importantly, God has shown me with precise clarity that good will always overcome the bad.  Period.