Sunday, September 30, 2018

Why did we start our own Lung Cancer Page?

Last week, a few of us took on the daunting task of starting a new lung cancer page.  Now, we didn't do it to step on anyone's toes, hurt anyone's feelings, or anything to that effect.  I had a patient email me that she can't take hearing about one more wife asking how to cope with death of her husband.  Then, in another group, a caregiver made a remark that set patients off.  I know it wasn't intentional.  Neither of them are, but we are fighting for our lives here.

So, we decided to create a page by patients for patients (and Lung Cancer Survivors).  Now, I did have a woman get mad at me because she said her husband died but she was still a survivor.  I happen to agree with her.  Being a caregiver and watching a loved one pass away has to be the most gut wrenching thing in the world.  The problem is, as a patient and someone fighting for my life, I couldn't hear it anymore. 

I think it's amazing to have a group collectively for lung cancer patients and caregivers.  Through facebook it is Lung Cancer Awareness and it's founded and run by LUNGevity.  You've also got Lung Cancer and Caregivers Support Group and finally you've got Lung Cancer Survivors and Support Group,   Additionally, LUNGevity has different groups dedicated to different mutations, etc.  They have a ton of information.  But of these groups, all have some caregivers in them.  And that's okay.  I'm not knocking that at all.

We wanted to make something to where you could only get in if you're a patient or survivor.  A place to vent, to talk about the things you're afraid to talk to non-patients or family about.  Your fears and advice for the future.  Right now we are a super small group, which is great because we are like family in there.  Anyone with lung cancer or who survived it is welcome to join.  It's Lung Cancer Awareness *Fresh Air* *No Drama* .  This is a safe zone.  You are able to really open up about your diagnosis and have the support of real patients going through the same thing.  I didn't really want it to get too big.  It's great to get to know everyone, plan meet ups, and show our loving support.  We don't talk about politics or religion, although you can say that you are praying for someone.

So, basically that's it.  I've gotten a lot of backlash and animosity I feel from other patients/organizations.  But, you only live once.  And if I want to comfort these people and them comfort me, I don't see a problem with it.  And if you do, I'm sorry.  This gives me hope.  The OG's that actually participate really makes me excited.  So thank you Linnea, Cliff, Don, Tracey, and all the other long termers on there.  I just LOVE it.  And guys, if I'm doing something wrong or you just want to vent, you can always DM me.   Thank you Catherine, Ashley, Diane, and Jennifer for helping make this dream a reality.  I love you ladies! 

Please pray for my friend J.C. as he just learned he has stage 4 melanoma.  And thank you all for your continuous prayers and support.  And if you want to join a group where you can air that dirty laundry and still have complete privacy....join us!  God bless you all!  And Karley is still playing volleyball! Thank you to all that prayed so much for her!

Saturday, September 15, 2018

Fatigue and Broken Dreams

This is such a common problem with us lung cancer people.  I mean seriously, you could tell me to nap anytime and I could.  Especially lately.  I think it may be depression from losing so many people.  Being diagnosed in 2012, I am so very blessed and thankful to still be here with my family.  But....I keep losing friends.  I feel like I talk about this in every blog.  Each of these people leaves behind a scar on my heart.  After Kelly Shannon, I wasn't sure how I could make it heal.

I try not to take life to seriously and have fun.  I do my best to not let cancer interfere.  And for the most part, it doesn't.  It's only when I lose a friend that I feel like it is really getting to me.

Cancer was a blessing to me in that it allowed me more time with my family and woke me up from being the workaholic I had become.  But it's scary to think of your children and other family having to go on without you.  It's not what I want, but if it happens, I don't want them to be sad.  I know it's inevitable and I'm totally guilty of it with my friends, but I want that day to be a day to rejoice.  I won't be the chick that smiles and cracks jokes, but deep deep down her heart is breaking for the people she's lost anymore.  Sometimes I can be totally carefree and for a few moments, forget all the damage that has been done.  But, this never lasts long.  It always creeps back in.  I feel like my world stopped November 27, 2012.  I see everyone carrying on, I just don't feel like I'm one of these people anymore.  I'm frozen in time.

So, after writing only this much, I'm getting super sleepy.  Thank you all for your continuous prayers and please keep them coming.  Karley healed and is back to playing the game she loves, volleyball.  I love watching every minute of her playing as well.  Also, please pray for the Jeffords family, as Sarah recently gained her wings.  She was in her mid twenties and lived not far from me.  There were three of us I know of with lung cancer in this general vicinity.  Now there are two.  And of the two, I'm the only one doing okay.  Please pray for Paula Lusher.  Her cancer has returned.  I keep thinking of all the broken dreams and hearts this disease causes.  It's devastating.  God bless you all.  And keep smiling!  You never know how much it can mean to someone else.

Thursday, August 23, 2018


Well, I posted my most recent scan results on my facebook page but some of you may not be on that.  My scans were stable! I got a pretty funny text from my oncologist, screenshot below.  I know it's the work of God, not my own doing.  But it looks like I'll hit that 6 year mark in November....and still on Tarceva.

Also, my scans are now every 4.5 months again instead of every 3.  To still be on my first line treatment is amazing.  But, living with this can make you lonely.

As you all know, I've lost a lot of good friends over the years.  The latest was by far the hardest.  Every time I see a picture of a unicorn, rainbow, or play around with snapchat, I can feel Kelly near me.  She is always in my heart.  Not a day goes by I don't think of her, she was such a breath of fresh air and lit up a room wherever she went.  And she ALWAYS sought out the best in people.  I admire her so much for the way she lived.

I think one of the hardest things about being a long term survivor is losing people.  I want it to get it easier, and maybe it will knowing they aren't in pain anymore.  But survivor's guilt is awful.  I feel for the family and friends....the ones left behind.

I feel like my facebook page and blog are sometimes obituaries lately.  I need that to change, so I'm going to make it change.  I'm going to write more positively, but no worries, I'll still give you the raw blunt honesty I always have.

People say I'm strong.  I don't feel like that, I feel weak.  I do cry, for the friends of lost, their families, and for my own family.  Sometimes I feel guilty that this has to be their life too.

Ok.  So subject change.  My boyfriend Josh and I went out last night and I did a stellar job of embarrassing him by singing karaoke.  It's the place where we met.  I seriously sound like a dying cat.  Lucky for him, it was a group of us so you couldn't really tell who the dying cat was....

Karley is healing from her fractured pelvis and we are praying she will be able to play by the time of the first game.  Volleyball is that girl's life.  We have an appointment with the orthopedic the day before her first game.  Prayers appreciated!

Well, just wanted to give you all my scan results in case you didn't know and to let you all know I'm doing very well.  And I wanted to stress my utter hate for common core math.  I was always a math brainiac, but either they cut that part out with my brain tumor or it's just too confusing.  I was always the tutor, now I'm looking for a math tutor for my 8th grader.  Anyone in the St. Simons area, if you can do this, please contact me.  I already went to school.  I don't want to do it again!  My brain is done learning...like finished.  I don't want to learn anything else unless it's totally useless and amusing.

Well, that's all I've got for today folks.  Thank you all for your continuous prayers and don't forget to hug your loved ones.   You never know, things could change in an instant.  I could outlive everyone reading this!  Probably not....but miracles happen!

Please keep my cousin Sandy in your prayers.  She's undergoing a lot of testing right now and we are praying it's fixable.  Love you all and thanks for continuing to read.  I'll write a deeper post later...I stayed out a little late last night.  NAPTIME!

Oh yeah, I found some old pictures from when Karley was younger.  She was so cute.  Have to share!  This girl has my heart.  They grow up so fast.  She loves with all of her heart.  She gives me hope.  I'm so proud to be her mom.  So silly and happy...she's my inspiration.

I love my oncologist.  We are both so sarcastic.

Monday, August 6, 2018

Oh Joy - Kelly's Celebration of Life

I flew out so early Friday morning and arrived to meet Jeffrey Clark for the first time when he picked me up from the airport.  We met Kathy (first time for me) at a restaurant for lunch.  Jeff and I promptly went down for a nap after that.

I awoke to their adorable son, who is by the way, a real life super hero.  He wouldn't show me all of his capes....I gotta see the capes Finn.

Jeff, Kathy, and I went out for a bit Friday night.  It was pretty fun.  I can't play darts very well, and Jeff can't play Big Buck Hunter very well.  So glad those important facts were established.

Jeff and Kathy dropped me off early at the country club where the celebration was being held.  Apparently I got ready to celebrate by falling down a flight of stairs before heading out.  I am SO graceful.

People began pouring in and I got to meet so many of Kelly's friends and family.  The 24's (her 24 year long friends referred to as the 24's now) all showed me such warmth and love when I arrived.  Kelly's father Tom did as well.  He did an amazing job speaking about his daughter's life and the legacy she leaves behind.  One of love, optimism, and pure joy.  I'm praying so much for Tom and his wife and their son, and the children for strength during this difficult time, along with everyone who loves her, and their were a ton of people that came out to celebrate.

Her ex-husband read some adorable poems from their children (who were totally playing games on some phones that I wanted to play).  He also read his own statement about her.

Peter, her friend, prayed with us and spoke so beautifully about Kelly and how her spirituality had grown since they met.  I could feel it when we spoke, when she asked if our souls would recognize each other and when she said she was excited for this next life, although she didn’t want to leave her boys.

I spoke about how Kelly and I met, about how she opened up a little more about fears, and how we were horrible at listening to classes at the LUNGevity summit so we ended up playing with SnapChat the whole time.  I got her hooked.  I'm so sorry...I should've known she needed an intervention when we got home and she sent something ever day!  She was so goofy.  Even in the hospital, that she was in and out of this past year, she still sent crazy snapchats.  I have some great memories on mine of her.  I really hope they allow me to bring it into heaven.  We turn into 12 year old girls with that app.

Chris Draft attended and spoke about Kelly's bravery and courage and how we must continue to fight lung cancer, for people such as Kelly, gone too soon.  I had to go before him because it is impossible to follow up his speeches.

A few more people went and then everyone mingled.  The set up was fabulous and Kelly would have loved the fact that we all weren't sitting in a funeral home crying.

I honored her by doing what we did best, SnapChat pics, so get ready for an overload of pics in this post.

I don't think my speech did my soul sister the justice she deserved for always being my voice of reason.  She calmed me down.  She was and always will be my soul sister.  And the fact her friends took me in as that is just amazing.

Tiffany drove me to the gathering of the 24's and more afterwards and we held a celebration for Kelly's birthday, August 13th.  They shared such sweet memories of Kelly and we laughed and talked about the overpowering LOVE she had for everyone.  There is literally no one else like her.  Chris came by and eventually Jeff picked me up.  Chris and I both stayed with the Clark's so Chris could take me to the airport since we were on the same EARLY flight.  I was so glad he was there....I swear I need a babysitter.  Thank you Tiffany for taking this stranger in and carting her around!

All in all, I think we had Kelly smiling, laughing at us, and just overjoyed at the peace so many of us felt.  She will forever be in our hearts, but this weekend gave me that closure and peace I had been seeking.  Bonnie Addario even messaged that we will all continue to fight for Kelly and others with this terrible disease.  She brought together so many people.  And I feel like I gained so many friends that were in her corner and I'll remain friends with them through our mutual bond with Kelly.

Although I have peace as to where she is, free of pain and machines and hospitals, I'm selfish.  I want her here.  I feel a little lost without her, but I'm sure she will help me find a way. 

As Chris so eloquently quoted 2 Timothy 4:7, "I have fought the good fight, I have finished the race, I have kept the faith".  And that she did.


It's so much better today...the other one was worse.  I'm graceful like that

The Remaining Pics are In Honor of Kelly and Her Favorite Snapchat Filter
This is exactly what Kelly would have been doing...

Kelly's Dad - "Only doing this for Kelly"