My sweet angel

My sweet angel

Friday, December 4, 2015

Open Letter to a Newly Diagnosed Lung Cancer Patient - The Journey

I was recently asked to write an open, honest, raw letter to a newly diagnosed lung cancer patient about my journey from the beginning.  So, here it goes.  Karley, if you're reading this, stop now or I'll take your phone away for a month.

Not even a month after I turned 33, my headaches had become unbearable.  After misdiagnosis after misdiagnosis, I visited my family in Atlanta over Thanksgiving break.  I currently live about 5 hours away.  At this point in my visit, I asked my mom to drive me to the hospital.  My vision wasn't right (I couldn't see clearly, swirly colors and no depth perception).  She took me to Piedmont Henry, a local hospital.  My dad stayed home to watch my daughter, Karley, who was only 7 at the time.

They took me back relatively quickly because my pupils weren't responding as they should.  After a scan (not sure what kind, I was on morphine by then), the ER doctor came in.  I'll never forget these words, "I wish I had better news, but we found a gray area, a tumor.  We've contacted Piedmont Atlanta and a neurosurgeon is on call.  We will have to transport you now."

A billion things began running through my mind.  I suddenly began to think clearly.  I have a brain tumor.  They are going to do brain surgery.  I may die and never see my daughter again.  I need her here NOW before I'm transferred.

My mother called my father and had him bring Karley up.  It was the end of thanksgiving break and she was supposed to be in school the next day (5 hours away).  They showed up just as they were putting me in the ambulance.  The pain was excruciating.  Karley was screaming to get in the ambulance with me.  They let me hug and kiss her and told my family we had to go and no one could ride.  That is the last time I saw Karley before my world changed forever.

During the ride I was given dilauded because the morphine wasn't helping.  I don't remember the next few days until I awoke after brain surgery in recovery.  I was so mean, just wanting a room.  I finally got one in ICU and a few people were allowed to come in.  Karley's other grandmother had flown her back home to her dad, so it was basically my parents, sister, and friends taking turns.

Then, the neurosurgeon came in.  I'll never forget these words either.  "We've removed the tumor from your brain and it was malignant.  We could tell it came from somewhere else in your body.  We are running tests, but it most likely came from your lung".

I'm not an idiot.  I knew, if it spread from my lung to my brain, I was a Stage 4 patient.  I was a goner.  My only questions for my oncologist were, "can it be cured?" in which he responded, "no, but it is possible it can be treated".  Then I asked, "how much time do I have?".  NEVER ask this question because there are so many treatments, precision medicines coming out today, this is not a good question for your well being.  After pressuring him, he replied, "while we are still running tests, I don't know.  My best guess as of what we know now, 12 -18 months".

WHAT?!  This is not what my life was supposed to be like.  I graduated near the top of my class in high school and college.  I had a fabulous job on an island running a hotel and restaurant, and most of all, I had a 7 year old to raise.  This had to be a dream right?  Wrong.  I think they gave me something to calm me down.  I was freaking out.  I felt like I was floating, my stomach was turning, and I had a lump in my throat the size of a golf ball.  I wanted to just start crying then.  Why me? Why me?  Why Karley?   How can she lose her mom??  I spent most of the next days being entertained by friends, but never really happy.  I got out of the hospital after about 4 days and returned to my mom's.

Karley's dad brought her to see me.  She didn't understand anything other than she had to be gentle with mommy because of the big scar on her head.  She danced and laughed and played with my friends while I watched, just thinking, "what is going to happen to her when I die?  will she be okay?  will she remember me?"

Her dad and I split up several years earlier but he stayed that night.  I cried to him and made him promise to take care of her, which was dumb.  I know he will.  I also didn't want her to know I had lung cancer.  I was embarrassed for some reason.  I thought only long term smokers got lung cancer.  That was not me.

Karley had to go back home after a few days and I stayed in Atlanta for more tests.  A petscan confirmed I had stage 4 non-small cell lung cancer adenocarcinoma.  I looked it up on google (another big mistake), showing a 4% 5 year survival rate.  Outdated statistics.  There have been more improvements in precision medicine in the past 4 years than in the past 4 decades.  Either way, I wanted more opinions on treatment (which was originally traditional chemo).

After a few weeks I was cleared to fly again so I could be home for Christmas.  It was bittersweet.  I couldn't help but think this was my last Christmas with Karley.  I tried to make videos for her but fell apart every time.  I had to get the cancer out of me, but no surgeon was going to touch me.

My second opinion was at Baptist Health in Jacksonville, FL.  My biopsy results from the brain tumor came in and it was discovered I had a driver mutation, an EGFR mutation.  The oncologist suggested I start taking a pill for it.  That's it.  No chemo.  Ummmmmm, what?  I wanted to live!  How is a pill the most aggressive way to live?  I was clueless.  That's when I made my mind up to go to the mother of all cancer centers, MD Anderson in Houston, TX.

I went after gamma knife radiation to ensure my brain was clear of cancer.  In Texas, I had test after test.  I think they were preparing to remove my right lung, since at the time of my last petscan, was the only place they saw the cancer.  But after MD Anderson did their own CT Scan, my oncologist cancelled all of my other appointments and came in on her day off.  She said surgery was not an option.  Both of my lungs and lymph nodes lit up like a shotgun blast to the chest.  Numerous nodes infected with cancer, near my heart, and a lot of other places I can't even pronounce.  Once again, the oncologist recommended this pill, Tarceva.  I asked if that was the most aggressive way to treat it.  I got a "yes, it's the best we can do".

After getting this news I earned myself a visit to the psychiatrist, mandatory of course because I was hysterical.  After my visit I was put on antidepressants and told my mom, "I want to go back to Atlanta, NOW".  We were able to get a flight the same day as all of this.  I took my first tarceva pill at the airport in Houston January 7, 2013.

I got home and began to push Karley away.  I wanted her dad to have her more, because I thought I was going to die.  I didn't want her heartbroken.  If she barely knew me anymore, it would be less painful.  We decided to tell her.  She asked if I was going to die.  I responded, "I don't know.  I can't promise I won't die.  But, I will promise that I will do everything in my power to live".  I don't break promises to her.

I took her to a therapist.  She didn't open up much but the therapist told me pushing her away is the worst thing I could do.  I listened, and that's when I decided to make the most of the time I had left.

Now I didn't go skydiving or rocky mountain climbing or anything.  But, I bought myself a brand new bedroom suit for the first time, Karley a bedroom suit for the first time, and we went on vacation to Washington DC for a week, all thanks to my credit card #outofcontrol.  I couldn't work, so my fundraiser income was going towards living expenses (i.e. rent, utilities, groceries, etc.).  Hey...I thought I only had 12-18 months.  Then, I flew to L.A. with a friend who also had a brain tumor.  Our bucket list was well on it's way.

So, my first few petscans kept showing shrinkage of my cancer.  Up to 60% by my second scan.  By the end of 2013, I had radiation to my primary tumor, and haven't had any active cancer since.  I have scans next week, so prayers are welcome and appreciated.  Jesus Calling, by Sarah Young, has been a lifesaver when I needed to feel God's presence.  It always lifts me up and keeps me going.

So, I wasn't going to die yet.  In fact, I just surpassed 3 years of LIVING with stage 4 lung cancer.  As for my financial situation, still working on that.  So many have helped in the community, from my church, to my parents, to my former employer, and several other establishments that threw fundraisers...Ziggy Mahoney's, Taco Mac in Stockbridge, The Brick Karate.  I lived off of those for 6 months until disability kicked in.

Now I spend my days sleeping a lot and spending time with my daughter, fiance, and soon to be stepdaughter.  That is hope right there.  But I also do my best to advocate for more research and help others steer in the right direction when I can.  And, I love to make people laugh.  I just learned about Cure Forward, a free service that helps you to find clinical trials, ask questions, seek help.   I've checked out their site and really wish they had it available and known when I was diagnosed.  There is so much more to the cancer world than you know, until you're right smack in the middle of it.  And social media has been amazing.  You find experienced survivors.  I changed my eating habits and cut out sugar (for the most part), eat green and leafy, and drink a high pH based water.  No sodas!  I also found a closer connection to God in my faith, my daughter baptized and is working on her faith too.  I give all the glory to God, and that may not make me popular, but I feel he's kept me here this long for a purpose.

The reason I'm writing all of this to to try and help someone newly diagnosed.  We are here for you.  So many are.  And the emotions you are experiencing may be unique to mine, but they are normal.  It is normal to be depressed, angry, even straight up crazy after getting this news.

But, you don't need to give up.  Fight for yourself and your loved ones.  Fight for the others that may come after you in this journey.  Help in any way you can to find a cure.  My tissue will be donated to MD Anderson upon my demise.....which I'm hoping will be a very long time from now.   But when this drug quits working, I know there is another lined up for me.  They are coming out with new medicines every day.  You may have to live with it, jumping from drug to drug or trial to trial, but it shouldn't stop you from LIVING.

I wanted to leave you with some quotes that have inspired me through this journey so far (if you have not watched their speeches, I encourage you to do so):

In the words of Stuart Scott:

 "When you die, it does not mean you lose to cancer.  You beat cancer by how you live, why you live, and the manner in which you live"

In the words of Jimmy Valvano who created the motto "Don't give up.....Don't ever give up" for The V Foundation for Cancer Research:

"To me there are 3 things you should do every day.  We should do this ever day of our lives.  Number one is laugh.  You should laugh every day.  Number two is think.  You should spend time in thought.  And number three is, you should have your emotions moved to tears, could be happiness or joy.  But think about it.  If you laugh, you think, and you cry, that's a full day.  That's a heck of a day.  You do that seven days a week, you're going to have something special."

"Cancer can take away all of my physical abilities.  It cannot touch mind, it cannot touch my heart, and it cannot touch my soul.  And those three things are going to carry on forever.  I thank you, and God bless you all."

What I thought was my last Christmas with Karley (December 2012)
I can't say I praise God enough.

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