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 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.