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.

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.

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!

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.

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!

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

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