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!


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.