My sweet angel

My sweet angel

Wednesday, December 23, 2015

Home

When one thinks of home, there are so many different opinions of what that is.  There is the home you grew up in, the home you live in now, a place that can feel like home or the last home.  The last home, I feel, is the true home.

This will be my last blog this year.  A lot has happened and I've been so blessed.  My family is expanding, I'm seeing another day, another Christmas, and hopefully a new year (none of us are promised tomorrow).  This journey has certainly taught me not to take life for granted, but to embrace every emotion, experience, and make as many memories as possible.

We have this one earthly life that God has given us to worship him and enjoy ourselves and our lives.  Jesus died for our sins and in two days we celebrate His birth (maybe not his actual birthday), but I've never been one for particular days.  After all, every day here with my loved ones is a celebration.

I can't wait until Christmas morning to watch the girls open their presents and see the rest of my family.  Christmas is my most favorite time of the year.  To me, it's still magical, no matter how old I get.

However, I know that there are some people who don't have their loved ones in their earthly home, maybe for the first time this Christmas.  And to the families of Gretchen Anderson, Dan Powell, Paul Kalanithi, Steven Donaldson (Mandy Busch's father), Curtis Stoner, Courtney Kyte Plandowski and Brad Graves (and so many others I may not have mention - ambien kicked in), I cannot imagine how hard this must be for you.  My mom lost her brother (Bill Webb) this year too, please pray for my mom and his wife.  I take comfort in the fact that they are in their final home.  With no more sorrow, or tears, or fears, or pain.  I didn't want to make this a sad blog, but I can't help but remember these people, and their friends and families and the so many others I've come to befriend and have lost along these past three years.  They will never be forgotten.

I never knew how large this cancer world was until I got sick (although two of the above were non cancer related).  And no, I'm not cancer free.  My cancer is inactive.  I will never be free from cancer (unless a cure is found).  Just have to keep watching the node that progressed a little and see a gynecologist for the abnormal test results.  Just praying the tarceva continues to work and I'm typing a similar message to this next year, with less losses.

Thank you St. Simons Community Church for once again helping to make our Christmas extra special.  This is one of my homes.  Not the final, but just one.  I love these people with all of my heart and soul.

The holidays are hard for so many, so please, keep them in your prayers. Please remember, you are not alone.  And thank you for your continuous support and prayers for me.  Life can change in an instant, make the most of it.  Hold your loved ones tight and make sure they know how much you love them.  And MERRY CHRISTmas.  God bless you all and be safe.  And remember, none of us know God's plan for us, we just have to trust Him.

A few end of the year photos:
















Never to be forgotten:


Paul Kalanithi with his wife Lucy and daughter Cady

 Gretchen Mitchell Anderson

 Dan Powell with his wife Rebecca

 Brad Graves with his wife Barbara

 Curtis Stoner with his wife Marie

 Mr. Steven Donaldson

Courtney Kyte Plandowski



Saturday, December 12, 2015

Results 12-11-15 Nothing Lasts Forever

After reading over my petscan, I no longer just have two rumors.  I actually have 3 solid nodules and right lower lobe opacity.  In the right lower lobe there was a mild FDG uptake again noted a maximum SUV of 2.1.  We aren't really worried about this.  2.5 or higher we start to worry.

I have a 3 mm non-FDG nodule in the left lower lobe which is stable.  Not concerned about that right now.

I have a 5 mm right middle lobe pulmonary nodule, once again stable.

Our concern is a nodule that has been growing since sept 2014 and is now 6 mm in size.  We are watching this one carefully since all others are stable but this one is still continuing to slowly grow.  It wasn't mentioned on my last few Petscans but now they are recommending keeping a close eye on it.

Also, my  adnexal station bilaterally (ovarian area) has an suv of 4.0 compared to 2.6 on the prior exam.  My last gynocological exam revealed pre cancerous cells so I may be going back there before the 6 month waiting period.

Otherwise, the exam was stable without evidence of hypermetabolic neoplastic disease but since the one nodule is growing, we have to keep a close eye on it.

So, not the best news in the world but still good news to be stable.  I just wish things would quit growing.  I'll just blame any weight gain on the new nodule.  😉   I understand a lot of that was really technical so to simplify (because one of my smartest friends asked), I have a new small nodule growing slowly, (2 total in right and 1 in left lung).  We will keep an eye on the one growing since it's not showing cancerous activity.  And I am going to return to the lady Doctor sooner than anticipated to ensure those precancerous cells have not become cancerous.

Thank you for all of your prayers and thoughts.  They really help so much through the hard times.  I think the news from all of this is hurting my family a little more than me.  I just feel at peace and know God has a plan.  Please pray for my family and friends.  They worry so much.  I wish I could take it away from them.

And Christmas is almost here (I know you know!).  Let's not forget the true meaning, celebrating the birth of Jesus.    Let's also pray for all of our friends that have lost loved ones this year and previous years.  The holidays are rough.  And for our nation.  Stuff on the news is just too much right now.

I love you all and God bless you for continuing to share this journey with me.  ❤️   I'll write more later this week.  I just know some people are waiting on results.  And now it's tomorrow!


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.

THE BEGINNING
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.

OUT OF THE HOSPITAL
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).

OUT OF DENIAL, INTO DEPRESSION, CHASING HOPE
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".

SINKING FURTHER, DENIAL WAS OVER, ACCEPTANCE AND DEPRESSION SET IN
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.

LIVE LIKE YOU ARE DYING
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.

BUT YOU'RE NOT DEAD YET
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.