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.

Friday, November 27, 2015

3 Years!

While most of you are probably scrambling to find amazing deals this Black Friday, I'm on the way up to visit Brent's family after visiting mine for Thanksgiving.  And as most of you are getting that Christmas shopping done, I'm silently celebrating my 3 year cancerversary.  That's right, 3 years!

I've had roller coasters, ups and downs, and am sure I will continue to do so.  But for today, I will be happy because I am still here.  I am alive, feeling great, and spending time with my family.

It's bittersweet, because we've lost so many in our community and even friends outside of the lung cancer community.  But I try not to think about that because everything is going great right now, although survivor's guilt lurks in the back of my mind...always.  And 3 years....NEVER did I really think I would make it this far.  I give it all to God.  Without Him and my doctors, and the support of my friends, family and church, there is no way I could have made it this far.  It takes a village.

Cancer does change your perspective.  I don't like arguing, staying mad, holding grudges....it's too short people, way too short and can change in the blink of an eye.  I am so Thankful for everything I have.  I hope you all are too.

So, Happy 3 year Cancerversary to me!

And thank you all for your continuous prayers and support.  Please pray for the families of the ones we lost this year, Gretchen, Paul, Dan, Brad, Alexis, and more.  Please forgive me if I forgot someone, I'm a little tired.   And please pray for the ones who continue to fight the good fight.  Hope you all had a Happy Thanksgiving.

I have scans in about two weeks, so I would appreciate all the prayers I can get.  Love you all!







Wednesday, November 25, 2015

Profiles in Lung Cancer - Day 25: Roz York Brodsky, "There is much more hope than there used to be"

Eleven years ago Roz York Brodsky was diagnosed with non-small cell, giant cell, locally advanced lung cancer.  This is a very rare form of lung cancer.  At the time there wasn’t the social media support and people like Peter Jennings and Dana Reeves were dying from lung cancer.  She was terrified.  The upper right lobe of her lung was removed.  She was only 46 at the time.  Afterwards, she began regular check ups.

A year ago, she was diagnosed with stage 1 non-small cell adenocarcinoma lung cancer.  Luckily, it was caught early due to her on-going regular check-ups.  At this point they removed the middle right lobe of her right lung.  She currently has stage 0 but with pre cancer cells in her left lung, so is facing another possible surgery.

Roz has been able to resume a normal life to an extent.  She does have pain issues; her breathing is not the best.  She mainly works from home bookkeeping.  She is also on the Board of Directors for Save Me Rescue and fosters dogs in need.  This is her true passion.  Additionally, she is on the Board of Directors for Lung Cancer Canada, the only cancer organization in Canada solely dedicated to lung cancer patients.  She just turned 57 and is happy to be here.

Something we may not know about Roz is her personality.  She seems like such an extrovert but is really a private person until it comes to lung cancer.  She feels lung cancer has helped her come out of her shell and open up a whole lot more because of the need for more people to speak out.

When asked what she wanted the public to know about lung cancer, she specified the following:  1) by having lungs you are at risk, 2) by having lung cancer, people are being ignored to death (literally), 3) the stigma is totally unjust, 4) it is shameful the way lung cancer patients are treated, 5) there is way more hope than there used to be.

Her hope is derived from her doctors that she’s met over the years.  They are so dedicated.  Her current Oncologist is on the Chair of World Lung Cancer organization and has reassured her they are diligently working towards new treatments, such as immunotherapies.

I asked if she had any suggestions for promoting lung cancer awareness in the future.  We found that we think alike in this area.  If we could find a celebrity that would promote continuously, maybe we could have a chance to stop the stigma.  Right now, so many people are ashamed.

Roz York Brodsky pictured with one of her precious dogs.

Yesterday's post was by Lysa Buonnano at www.lysabuonanno.wordpress.com about Jeff McManus.
Tomorrow's post will be Linnea Olson's blog at www.outlivinglungcancer.com about Christian Nataline.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/  A list of links to all the profiles on the original bloggers' pages can be found on the #LCSM Chat site on the Profiles for Lung Cancer Page.

Tuesday, November 17, 2015

Still Living with Stage 4 Lung Cancer at 36

Today I went to see a counselor at our church.  I absolutely love St. Simons Community Church and the family of people we've grown with there.  I reached out because Karley recently told me that she felt like she needed more faith, it wasn't strong enough.

I totally understood.  How could it be strong enough to understand your mom has stage 4 lung cancer when you're only 10?  Why would God do this to us?

Well, I want everyone, including Karley, to understand.  All of our days are numbered.  We are all going to die one day, some sooner than others.  What is important is that we live the way He would want us to live.  There is a purpose for all of us.  Mine may be this blog, reaching out and helping people, raising my girl, I don't know.  And I won't know until I'm at those pearly gates.  Neither will any of you.  So, I do have complete faith in my healing.  But, where that healing takes place, that is up to God.  That is something we do not have control over, so what is the sense in worrying?

That's what I want Karley to know.  I will be fine.  Whether it be here or in heaven.  She doesn't have to worry about me.  Yes, I get sad because I worry about her, but I can't control what happens.  I only pray that she is fine without me one day.  She's a strong girl and I pray she will continue to have the love and support she needs to deal with the big things that come her way.  She's been through so much.

We are going back to that counselor 12/1 to both talk to her.  She was so helpful.  We are also going to the Jacksonville Jaguars game with Chris Draft Thursday so I'll update Friday.  And my 3 year cancerversary is coming up 11/27!

Thank you all for your continuous prayers.  I cry just thinking about all of you that care so much to pray for us.  Please also pray for my friend Dan Powell's family, he gained his wings this week.  He came in second in Chris Draft's Super Bowl Challenge and I met him and his wife Rebecca at the Hope Summit in May.  They have a a young son together and could really use some prayers for peace and comfort.

Also, please prayer for Ansley Jones, as she's relapsed with her Leukemia.  She has such a positive spirit. Karley just adores her and prays for her every night.   And pray for Kelly Shannon, she's getting scans and results in a few days.  You know how we live every 3 months.  Please pray for Karley, for peace and comfort and more faith.  She needs it.  She's so young to be going through all of this.  I think Ansley's relapse scared her a little, knowing mine can come back.  She has a big heart and would do anything in the world for you.

On a brighter note, we will be doing an interview with 11 Alive Atlanta Monday Thanksgiving week and a photo shoot for Family Circle magazine who is doing an article on me Tuesday Thanksgiving week.  The girls (my soon to be stepdaughter Livi and Karley) are super excited.  And this Thursday will be Livi's first football game.  Chris was so sweet to get tickets for our whole soon to be family.

Just remember, don't give up hope.  They gave me 12-18 months.  It will be 3 years in a few weeks and I have no active cancer and I feel great!  So screw you cancer!

And don't forget,  IT'S LUNG CANCER AWARENESS MONTH!!!

A few pics of us just living life:

Thanksgiving Feast 2015


Color Me Happy and Lunch with the Girls

Karley and Livi putting up the tree


Filling the Operation Christmas Child Boxes





Wednesday, November 11, 2015

Profiles in Lung Cancer - Day 11: Kelly Shannon, "We need to show the world who we are"

Nearly 4 years ago, Kelly Shannon was diagnosed with Stage 4 non-small cell adenocarcinoma with the KRAS mutation (more commonly associated with people who have smoked). Kelly was a 35 year old non-smoker when she was diagnosed in January 2012, and since then has endured numerous types of treatments from traditional chemo to 2 separate clinical trials.  There aren't many options for someone with the KRAS mutation, as there are with and EGFR or ROS-1 mutations.  She is now a 39 year old single mother raising two children, ages 5 and 7, while jumping from treatment to treatment in order to buy time for a KRAS treatment to come out.

She is currently on traditional chemo that is keeping her tumors stable at the moment. Her longest treatment lasted 1 1/2 years and was a clinical trial where she had to travel from her home in Rochester, NY to Memorial-Sloan Kettering in NYC. It was a very promising clinical trial for Kelly, and it wasn't expected to keep her tumors stable for as long as it did. The doctors don't know why that particular drug worked so well for Kelly. She was the last one on the trial for months, until it eventually stopped working for her, and the tumors had spread too much to allow her to continue. We need more clinical trials like this one, especially for people with the KRAS mutation. While it's been nice not having to travel for treatment, Kelly has hopes that another promising clinical trial will become available for her when it is needed. She will do anything to fight this disease.

A typical day for Kelly consists of waking up very early in the craziness of the morning to get her children off to school.  Then, not unlike myself, lays back down to rest.  She rests a lot, but tries to maintain a balance so she can still function and get everything she needs to get done and have time to spend with her kids.  She feels lung cancer has changed her perspective on life. It's humbling. It has made her appreciate the little things. Yet it is very difficult to function as single mom, go through chemotherapy, and deal with the unknown of her future. Having a mommy with cancer is all her kids have ever known, since they were 1 and 3 when she was diagnosed.  That saddens Kelly, but that's the way life is for them.  She wishes it were different, but she tries to give her boys a life full of as much normalcy, fun, and love as possible. Though she has her days where she breaks down in tears as well.

Something others may not know about Kelly is she is a t.v. addict.  She will binge watch t.v., especially during the cycle of chemotherapy when she's feeling most fatigued. It's her break from reality and helps her get through.  She loves the really stupid reality shows.  I shared with her my love for the ID channel, which is my own escape.  I realize we have a lot in common.

I asked Kelly what she wanted people to know about lung cancer.  Her response was the same as I hear from every person who has lung cancer.  Anyone with lungs can get lung cancer.  She was misdiagnosed with pneumonia for 6 months, because her doctors never considered that the "healthy, never-smoked, 35 year-old" was at risk for lung cancer.  She also wants people to stop the stigma associating lung cancer and smoking.  Not only does it hurt all lung cancer funding, but especially hers since her mutation is most commonly associated with smokers.  She feels no one deserves lung cancer, smoker or not.  We don't blame people for getting other cancers, why blame people with lung cancer?

Kelly's hope stays strong based on the new advancements that are being made in the field of lung cancer research. Since her diagnosis nearly 4 years ago, she's seen a lot of progress in the amount of treatments available, and she appreciates the persistence of advocates that are working hard to increase awareness.  She is trying to buy time for the next big thing in lung cancer to save her.  Hope for her also comes with the support she receives from family, friends, and even strangers. Whether it be in the form of meals, help with her children, financial donations, or just someone to talk to.


Kelly feels that if others could see the real faces of lung cancer, who we are, more than what has been promoted in the mainstream media, we could get more funding.  We need to show the world who we are.


Kelly Shannon pictured above with her two sons

Yesterday's post was by Tori Tomalia at www.lil-lytnin.blogspot.com about Brendon Stiles, MD.
Tomorrow's post will be Craig Blower's blog at www.craigblower.wordpress.com about Karen Loss.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/  A list of links to all the profiles on the original bloggers' pages can be found on the #LCSM Chat site on the Profiles for Lung Cancer Page.

Saturday, November 7, 2015

Profiles in Lung Cancer - Day 7: AnneMarie Ciccarella, "I got a bully cancer, no cancer is a good cancer"

AnneMarie Ciccarella is a 58 year old passionate Lung Cancer advocate although she was diagnosed and treated with breast cancer, which she is currently NED.

Why is she so dedicated to lung cancer advocacy?  She lost her father to complications from treatment of this horrible disease on July 19, 2007.  His body couldn't take the second round of chemotherapy.  In addition to her father, she lost her grandfather when he was merely 55 to lung. These thoughts still bring tears to her eyes.  Finally, she lost her high school love to lung cancer not too long ago.   So three of the first men she loved were all  taken too early by this disease.

A typical day for AnneMarie involves writing on her blog, which started a a joke (chemobrain), but morphed into a blog for advocacy and research.  When she met Deana Hendrickson, a fellow lung cancer advocate, they knew the lung cancer community needed more.  Deana was tireless in her efforts towards making lung cancer awareness more visible through social media.  AnneMarie knew she had something there.  AnnMarie also likes to point out to companies that have the pink ribbon that it should be white the next month for lung cancer.  She lets them know that cancer is not all about breast cancer.  She sends messages and letters to companies promoting pink but rarely hears back from them.

Something you may not know about AnneMarie is her thoughts on breast cancer versus other cancers.  She feels like she was diagnosed with a "bully cancer".  This is why she advocates for others.  She feels like breast cancer gets so much attention, but no cancer is a good cancer.

AnneMarie wants people to know that a long as you have lungs, you can get lung cancer.  It's a horrible disease that has made too little progress due to lack of research funding.

When asking her what brings her hope, it was ironic because I had just watched the exact commercial she was referring too.  She feels hope is coming from areas like the new commercial from Bristol-Myers Squibb about the new lung cancer drug, Opdivo.  To her, the commercial is huge in the lung cancer arena.  It's moved the needle significantly enough to reach rural markets that haven't necessarily heard of mutations. Also, the breakthroughs in target therapies in gen mutations give her hope.  Hope he wished would have been around years ago.

Twitter Handle: @chemobrainfog

AnneMarie Ciccarella

AnneMarie's father and grandfather - both lung cancer victims


Yesterday's post was by Kim Wieneke at www.aquariusvscancer.com about Jessica Steinberg
Tomorrow's post will be Luna Okada's blog at www.lunaoblog.blogspot.com about Jill Feldman

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/  A list of links to all the profiles on the original bloggers' pages can be found on the #LCSM Chat site on the Profiles for Lung Cancer Page.

Wednesday, October 14, 2015

Results 10-14-15

Had my annual brain MRI today.  Once again, our prayers have been answered.  All clear!  We are so happy.  I was a little worried because I've been having headaches.  But, turned out it has nothing to do with cancer.  I hate how I relate every ache and pain to cancer.  But, that's the cancer world.  I think the big man upstairs has a greater plan for me.  I just hope I'm making Him proud.  My neurosurgeon is doing a paper on my case, trying to educate other physicians that giving someone a palliative care pamphlet and sending them on their way is not the way to handle stage 4 lung cancer with brain mets.   My case was the proof.   I just love him.

I drove up yesterday and am driving back tomorrow.  I had an interesting trip up.  I got pulled over, which isn't necessarily unusual.   But the reason - slow poke law.  Never have I been pulled over for going too slow.  I've had more speeding tickets than I can count.  I couldn't help but laugh and be a little proud of myself.  I also realized I probably need a driver because lately I get pulled over a lot.   Luckily the cop laughed at those statements too and just told me to stay in the right lane.  Funny thing is, I was speeding when I got pulled over.  I was going 80 in a 70 but slowed down to 75 when I saw the officer.  So technically I got pulled over for going to slow while speeding still.   I can't win with this driving thing!!!

Not much else going on except everyday life.  I haven't blogged in a while because we've been a little busy at home.  I will blog more later.  I'm super tired already.  And Happy 1st Birthday to my niece, Sarah Catherine!  Love you sweet girl!

And how could they cancel Chasing Life!  My favorite show because I could relate so well.  So many young people with cancer did.  Shame on you ABC Family!  Don't worry, I ranted on Twitter.  Won't do anything but made me feel a tiny bit better.  

Thank you for all of your continuous prayers and please keep Karley in your prayers.  She had a little extra trouble with this trip.  Also, please pray for Carmen, Brad, The Mitchell-Anderson family, The Lee family, and so many others that are and have fought this cancer battle.  There are so many, too many to name.  Thank you all again for taking the time to read this and I promise to right more soon. Lots of other stuff to blog about, just tired!   God bless!



Thursday, September 24, 2015

Some Crayons Have Asbestos, Asbestos causes Mesothelioma and Lung Cancer...what the what?

Why am I writing this?  Well, Saturday Sept. 26 is Mesothelioma Awareness Day.  Mesothelioma is a rare form of cancer and is most commonly caused by asbestos.

I had a new friend reach out to share his wife's story about her battle with mesothelioma and we thought it would be great to bring some of this to light.  How did she get it? At the age of 36, Heather was diagnosed with malignant pleural mesothelioma shortly after giving birth to her daughter in 2005.  As a little girl, Heather was exposed to asbestos fibers on her father's work jacket.  That's all it took.  Decades later, the effect took place and she began the fight for her life.

She underwent a drastic surgery involving a heated chemotherapy solution and removal of her left lung.  She and her husband, Cameron, now spread awareness of this deadly cancer.

Like mesothelioma, lung cancer can develop from exposure to asbestos.  Guess what?  My high school underwent asbestos abatement while I was in school there.  Makes one wonder?

It is important that the public understand the possible outcomes of  asbestos exposure to keep your families safe.

As for the Crayons...it's more than that.  Google it.  But for those not wanting too, here is a recent Time Magazine article about the subject of asbestos and lung diseases:  Time Magazine

To read more about Heather's story, visit Heather's Story

As always, thank you for taking the time to read and thank you for your continuous prayers.  I have some other health issues going on I'll be sharing soon.  Fun times.  I'm starting to think the doctors just want me around.

And please pray for Elizabeth, the Andersons, Roy, Chaseman, and so many more.  They appreciate your prayers too.


Friday, September 18, 2015

Results 9/18/15

Well, good news.  The petscan came back with no active cancer again.  Yay!  I'm beyond blessed that tarceva is still working.  Praise God.  The scanxiety really gets to us these days.  But, once again, God has given us so much.

Life is not about money, or materialistic things.  It's about faith, hope, and love.  You can have all the money in the world, but without these three things, you can still be poor.  It took me so long to realize that.  I do have a great life.  I may not be rich....probably barely middle class.   But, I'm happy.  I'm happy to be alive and able to spend more time with my family and friends.

Thank you all for your continuous prayers. They just keep working.  Please pray for Carmen, Elizabeth, Amanda,Sheila/Faith's family and the Anderson family as they are all going through some tough times right now.

I'm just so happy to see how God is so good every day.  And thank you also to my wonderful friends who came out this past Saturday, in the pouring rain, to help raise money for lung cancer awareness and research with Free To Breathe.  You all are just more of my many blessings.  It made my heart fill with joy!

And I had a biopsy and took some pain meds today so I'm kinda tired.   If I left anyone out, I'm kinda loopy and very sorry. I just wanted to share the good news with you all.  God bless you and I love you. ❤️   I'll blog more when I'm not loopy soon.  Love you!







Saturday, September 5, 2015

Well, hello there my old friend...scanxiety

It's beginning to get like clockwork.  I know my scans are coming up in two weeks from today (actually yesterday now that it's after 1 a.m.).  This is when scanxiety kicks in.  So for the next two weeks, I will be moody, sleepy, mean, and sad.   That's usually how I handle it.  Oh, and I like being alone during this time.  I usually tend to get a little mean.

So, I could use your prayers for good news, that the tarceva is still working.  I made a huge leap of faith and started making plans for the future.  I don't want to feel like I jumped ahead.  I want to live, really live.  Not just a mundane life, but something more extraordinary.  We always think we have time.  Believe me, it can change in an instant.  So, really live while you can.  You don't want to regret it.

Another piece of advice.  No matter how young and healthy you are, get life insurance.  I was working on it when I was diagnosed.  It didn't happen and no one will touch me with a 10 ft pole out there.  So, think about your children and their future.  I just pray have enough loved ones who can help Karley in the future when she needs it. 

So the next time I will update will be sometime Sept. 18th.  If you don't hear from me on here, just wait....don't start calling.  I'm not the best at dealing with bad news.

Thank you all for your continuous prayers.  And remember, it's childhood cancer awareness month.  Go gold and show your support.  The funding for these cancers is also minimal.  Pray for Chaseman, a family friend diagnosed recently with leukemia.  I could go on for days about all the people cancer has effected (directly and indirectly) that need your prayers.  So, please...just pray for them.

I'll update soon....Thank you all for being here and following my blog.  Sometimes it's boring, but when I'm angry I'm sure it's kind of fun.   I guess we will see which way it goes 9/18.

Until then, I wanted to leave you with something besides a bible verse, trust me, I'm not giving up on God.   Just switching it up a little.  I know everything is in His hands.

"Has this world been so kind to you that you should leave with regret?  There are better things ahead than any we leave behind" - C.S. Lewis

Wednesday, August 26, 2015

Back to the Future

I've been really slacking on my blogging lately.  It's been an insanely busy summer.  But, time to catch up.

I know many cancer patients out there, including myself sometimes, feel like, "what's the point in planning a future if I'm not even sure I'm going to be in it?"   Well, the answer is, "so you can live and not let cancer win".  Cancer already does so much to us.  It takes away our self esteem by doing horrible things to our bodies, it hurts us and our loved ones, and it takes a huge financial toll.  And the thought of leaving loved ones behind, for the cancer patient, is unbearable.  Losing friends made in this journey is just another one of the hits cancer patients endure.

But, we are all given this one precious life, and God doesn't want us wallowing in self pity.  (There are days I will wallow, no one is perfect).  But I've made it on these meds for over 2.5 years now.  The shock of the initial hand I was dealt has long since worn off and it's time to move on.  There will be setbacks I'm sure, the cancer is only sleeping.  But to carry that burden is not my job.  That's where faith comes in.  So, I'm faithfully planning my future and will stand back up with every hit that cancer throws until God feels it's time.  I'm letting Him carry this burden.

Faithfully planning my future?  Well, as my Facebook friends now know, I got engaged.  I don't talk a lot on here about who I'm seeing etc because I'm sure no one wants to know the ins and outs of my love life.  People come to my blog to relate to another person with cancer.  But this girl is confident enough, through the grace of God, to pick up the pieces of her heart that cancer totally crushed and put them back together.

So, details?   Yeah, I'm a procrastinator but am working on them.  Even today. We will have something small because I'm gaining a stepdaughter and we can't afford anything big.  So if you don't receive an invitation, it's not because I didn't want you there.  It's because we just simply can't afford anything big.  Especially in this resort town where people actually come to get married.

So, who's the guy?   Brent Thompson.  A very faithful Christian and such a gentleman who happens to live across the street.   Where did he ask?  On the beach during a storm approaching at night.  You could see the lightening over the ocean.  Later on that night, I tripped on a stair and skinned my knee like a little kid.  Yeah, I'm clumsy.  Typical.

There will be more details later.  I have scans and results Sept. 18 so thank you for your continuous prayers and please keep them coming.   Also, please pray for my friend Elizabeth who recently received a cancer diagnosis and also my Karen Odell's nephew, Chase Busby, son of Chris and Cassie Busby, just diagnosed with Leukemia.  And finally, please keep our prayers up for Gretchen's family.  Those sweet girls lost their mama too soon.  Cancer is cancer.  It all sucks!

Karen Odell is greatly involved with the Free to Breathe Lung Cancer 5K we are participating in Sept. 12th in Jacksonville.  There is still time to sign up and join our team or donate if you are willing.  The link to join or donate is here:  Free to Breathe Jacksonville