prayers1New blog post….

 

We knew it would come eventually. My scan in September showed an enlarged lymph node in my right axilla. It wasn’t very big, but big enough to warrant a biopsy. Because my insurance company was no longer contracting with my oncologist’s office as of October 1st (YEP one more thing to deal with. They couldn’t wait until the end of the year like everyone else?) I had to get special approval to continue care under him. This can sometimes be done since the discovery was made prior to October and I’ve been seeing him since November 2012.

Long story short, the biopsy showed it is indeed adenocarcinoma of the lung. After talking to  other ROS1ders (my tribe), I contacted Dr. Doebele at University of Colorado Cancer Center to see how I could get him my tissue so I could contribute to our Global ROS1 Initiative. Our hope is that my tissue can be used to develop cell lines to help further research for my very rare driver mutation, which only represents 1 – 2% of lung cancers.

I have met with a breast surgeon (over-kill for a 15mm superficial lymph node in my opinion, but HEY!) and I’m having it surgically removed tomorrow around 11:30AM. It should be quick and mostly painless, but please pray for my mom while she waits during my little nap. It’s not easy waiting for anyone during a procedure, but she is selflessly there every time. This will be my 5th surgery related to lung cancer, in addition to 4 biopsies, and dozens of scans over the last 6 years. My mom was there for all of it and I’m forever grateful.

So what does all this mean? Well, I’ve been lucky enough to be on my current drug, Xalkori ( a TKI inhibitor that puts the breaks on my cancer growth) for 55 months. This is pretty extraordinary since the average ROS1 patient gets about 19 months before there is progression. For now, since this seems to be a lone ranger, I’m going to stay on my drug and pray nothing else pops up any time soon. I had another scan last week (it’s actually been 3 long months since we discovered this booger) and there is nothing new. YAY!!

I have already sent the tissue from my needle biopsy to be tested for mechanisms of resistance. When the time comes, this will give us a better idea what my next treatment should be. As they discover more about these driver mutations, it’s getting a little more complicated and precise as to what drugs will likely work or not. I’m on the only drug currently FDA approved for ROS1, so my nest option will likely be a clinical trial. These are drugs that are being tested in humans to determine their efficacy as well as which dose works best without causing unbearable or deadly side effects. At this time, there seems to be 2 decent options. None of them are in Las Vegas, so I will need to travel out of state to get treatment. We aren’t to that point yet, but we’re feeling out our options for when the time comes.

Overall, this is not horrible news. It could definitely be much worse. I’m just very thankful that, because of recent advances in medical research, I actually have other options. Our hope is that science can continue to stay ahead of my disease. Please pray that my tissue gets to Dr. Doebele within 24 hours so it’s still viable and that all goes well with my procedure. I am so thankful to be a part of this amazing community (wish it were for another reason). I get strength from all the love and support from my awesome family and all of you. Thank you.

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20170805_092512New blog post:

Bonding with your teenager

As our kids get older they need us less. This is a good thing. Hopefully
they’ve developed some skills, learned a little independence, can think
for themselves, and are on their way to being successful, productive
humans.
While I’m very proud of my kids and excited to see how they impact the
world, I’m not quite ready for them to be grown and not need me. Well,
my son is 25 but I’m in denial. He had a challenging journey but is
finding his path and is doing amazing! I have been raising kids for more
than half my life and it’s my favorite job in the world.

Of course I know they will always need my love and support, but not NEED
me. My daughter has started her senior year of high school. Woohoo!
Graduation will be here before we know it. She already knows where she’s going to college. It’s 466 miles away. Yes, I know it could be worse,
much worse, but I don’t like it. It’s a good school and has a great
program for her and it really should be a great fit. I just wish she was
going to be living at home. With me. Having dinner and going to the gym
together.

How do you do it? How have millions of other parents let their kids fly
away? Ugh! I’m not an anxious person and I look at everything pretty
logically, but I’ve had anxiety about this for about 6 months and she
isn’t even leaving for another year. Lord help me!

As we all know, as our kids get older suddenly hanging out with your parents on the weekends is not a priority. This doesn’t change just because your mom has lung cancer (darn it). She got her first job last month and works about 23 hours a week. She has good friends AND a boyfriend and is back into her school routine. I know I’m pretty lucky that she likes to hang with me as much as she does. We enjoy pool time, binging on Netflix (currently The Foster’s), eating, and recently exercising. This makes me SOOOO happy!

I have always enjoyed working out, but she has not. At 6 she was in soccer – for 2 months. She would sweat and turn bright red and would rather talk to the other girls in a cluster than run after a ball. That was the end of her sports career. She’s super smart, caring, funny and beautiful so I guess you can‘t have everything 🙂

A few months ago she started going to kickboxing classes with me and she
really enjoys it. WOOHOO! She goes with me twice a week (and so did her
best friend Brooke). Recently she made a bet with her boyfriend about
getting in shape (she’s 5 foot & 100lbs with abs). So now she goes with
me to the gym to lift weights 4 days a week plus kickboxing. I’m on a
mission to get stronger and build muscle so I have a pretty strict
routine and diet. In case you didn’t know 80% of being fit or losing
weight is what you put in your mouth.

I LOVE that we work out together. This is so much more than exercise. We
talk. (and we point out other girls with envy). We’re bonding. I hope this becomes a life-long habit for her. I want her to always take care of herself and be proud of herself. But most of all I hope she always remembers the times we shared together. She may just think we’re exercising but she is making me one happy mama!

How do you bond with your teen?

 

It’s all about perspective. Not to minimize anything anyone is going through because we all have something we’re dealing with. What may seem trivial to one could be very traumatic for another.

In my toughest days dealing with cancer it was hard to stay optimistic but I tried to. With the long list of potential side effects I

 

could have had I felt blessed to be somewhere in the middle of the “1- down right shitty” scale. It could have been worse… way worse.

A family member was newly diagnosed with metastatic melanoma.  He was very healthy otherwise and looking forward to retiring with his wife after just turning 65. He’s had one complication after another.  Just when he had a good week (relative) something else seems to happen.  After the latest challenge he is finally home resting, eating, and getting stronger.

While I’m feeling good right now,  seeing the battles others are fighting reminds me to enjoy each day.  Take nothing for granted.  Love each other.  Make memories.

 

Breathing!

The other day my sister asked me to take a spin class with her. I used to take spin classes years ago but because of my limited lung function I have not taken one since being diagnosed with lung cancer. But I’ve been working out a lot and feel like I’m in pretty good shape so I thought “why not?”

I was excited to try it but also a little intimidated. When I got there, they gave me a tour of the gym and helped me get my bike setup. I instantly noticed when I walked into the room that there was a scent. I didn’t just notice it because of the smell but I could also feel it in my chest.

When I mention this to the employee she said “oh it’s just essential oils and the smell will go away soon.” I told her you should let people know you are using scents in your rooms in case they have any breathing issues = blank stare.  I also noticed the room was quite hot. Probably not HOT but I would say close to 80 degrees. This is another thing that was not mentioned to me ahead of time.

Heat, humidity, and smells make it harder for me to breathe so I was worried I wouldn’t make it through this 45-minute class. She put me on the bike near the door which was also near the fan. Halfway through the class I asked the instructor to turn the fans on which definitely helped a lot. I watched the others in class with envy as they “up and down-ed” and “left and right -ed” with ease.

I’m still getting used to my body’s limitations.  The class was challenging and I had to go at my own pace but I actually really enjoyed it for the most part. And my sister was right, you will never sweat so much!

New blog post…..yep. i still blog (its been a long time)

6 years ago this week I started having a nagging back pain. I remember because my best friend had just died on the 5th, my aunt was in town visiting, and I was turning 40 in a few days. I thought “Yay! welcome to 40!”

4 1/2 months later,  on September 27th 2011, I was diagnosed with stage 4 lung cancer. Sometimes I miss my life BC (before cancer). So much has changed…. I was forced into retirement which was very hard for this workaholic  (I actually had 3 jobs at once for a few years.) I could no longer fully take care of myself during chemo and recovering from multiple surgeries, let alone do everything around the house and for my family.

My body was fighting a tough battle and went through many changes including menopause – yay! the only perk to chemo. Although the hot flashes are quite annoying – will they ever stop ladies?

I lost a lot of muscle and strength and my lung function is now fairly diminished but I still push myself to work out and get stronger. I’ve always enjoyed exercising. Running outside was a great outlet for me all through high school and my adult life. I love lifting weights and pushing myself.

I can no longer run but I still really enjoy pushing myself physically. In February I started taking classes at I Love Kickboxing Henderson. The owner Nancy and the instructors are awesome and they encourage me and motivate me to be better. The 15-minute warm-up is no joke! It’s probably the hardest part of the 60-minute class. I can’t run, so I walk. I get out of breath just doing squats, so I take breaks. And burpees? yeah those don’t happen. The bag rounds are three minutes and definitely work my lungs hard but I LOVE it! And both the girls go with me a few times a week so that makes it even more fun.

I’m sharing this to let you know that you may not be able to do what you used to but you can find something else you enjoy. We all have something we’re struggling with. It’s how you choose to react to it and LIVE your life.

I have a birthday this week and I’m always reminded: Growing old as a privilege that not everyone gets to enjoy.

 

 

I am  generally an optimistic and positive person, but I have to say that lately I have been even more hopeful than usual. This is for so many reasons. First and foremost my God and my family. I am beyond blessed to have a close and loving family that supports all my endeavors to raise awareness and do my best to help others. Without them I couldn’t’ do what I feel compelled to do.

date night June 2016

Date night with my awesome husband

I have a wonderful group of friends in the lung cancer community. It is a bittersweet situation to have this group continuously grow. While I love having them in my life, I’m also sorry that we have met under these circumstances. I just attended a LC Leadership Conference hosted by Free To Breathe and met many more great people making noise and advocating for us. Without cancer there are literally hundreds of people I never would have met. They keep me going, they lift me up, and they all inspire me to do more. They are part of my family now.

FTB LCLC2016

Free To Breathe survivors learning how to be better advocates

If you haven’t heard about Vice President Joe Biden’s Cancer Moonshot initiative you MUST read about it! The goal is to dedicate more time and funds to cancer research and to cram 10 years of exciting discoveries and knowledge into just 5 years. For those of us living on borrowed time this brings so much hope and excitement that we could be blessed with more time.

Days, months, and even years. Because that’s what we all want: more time to make memories with our loved ones.

I used to dread birthdays and getting old. Now I pray for them and even embrace the wrinkles. I hope you do too.wrinkles

May was a very busy month for me. Some work, some play and a lot in between. (this blog is a little long!)

My husband came home from work after 10 weeks!! We only had about 36 hours together before I had to leave, but we get a week together before he leaves again.

Then, I attended my 3rd National Hope Summit in Washington D.C. This is an amazing lung cancer survivor conference put together by the LUNGevity Foundation. The first one I attended was so inspiring and hopeful being able to meet so many other survivors in one room. LUNGevity gets top doctors and experts to give us wonderful, useful information to make our lives easier and they change it up every year.

This year there were about 300 of us (200+ survivors and 100ish caregivers)! I always leave feeling energized and excited about new ways I can raise awareness and help others. I enjoyed spending time with old friends and made many new ones. I’m also so happy my mom gets to attend this conference with me.

Then, straight from D.C. my mom and I flew to Orlando. Along with 2 other survivors, I had the honor of sharing my story and patient perspective to 200 sales reps at Pfizer. We received Rock-star attention afterwards and got great feedback and even questions on how they could do their jobs more effectively. It was a pleasure spending time with the dedicated team at Pfizer and I made many great connections to further our cause.

I also met a new friend, AJ, who has a beautiful heart and made me look deeper into my soul. I look forward to meeting his wife and family one day. I feel like I’ve made another life-long friend. I had a blast hanging out with Juanita and her husband Steve too. We went to the gym, hung out at the pool, went out to eat (several times) and got trapped in a Florida downpour. They’re a special couple that I’m so glad I got to spend time with.

pfizer team

We got home just in time to celebrate Mother’s day and my 45th birthday. We went out to eat at our favorite Mexican restaurant with my parents, then they left for Florida for 2 weeks. We spent Mother’s day with Joe’s family at Game Works. Being a mom has been the greatest gift in my life and I had a wonderful mom as a teacher.

I spent my birthday at the butterfly habitat at Spring’s Preserve. Then we went out for sushi and relaxed at home. I tried to soak up as much Joe-attention as possible in his short stay with us. But this time he’ll only be gone for 3 weeks.

I had lunch with a few great friends and accompanied a few other survivors to their dr’s appointments. I had my quarterly CT scan and biannual brain MRI. Thankfully those were both negative for any cancer and I remain in remission for 3 years now. I used to expect bad news at my appointments – because we all know my cancer will develop resistance to my drug eventually- but I don’t anymore. Thinking negative is not beneficial and worrying only makes it worse. So I choose to enjoy every day with as little fear as possible. I’ve gotten pretty good at it. People often ask how I avoid the anxiety – I really wish I could explain it. All I can say is I refuse to let cancer steal any more of my joy.

My daughter is taking finals and in just a few days will go to her last day of her sophomore year. Two more years of high school!?! Where has the time gone? My first goal I set after diagnosis was to see her graduate high school (she was 11). I feel pretty confident that I will make it to that glorious day.

We attending the grand opening of Veteran’s Memorial park in Las Vegas and hung out with my high school friend Alicia and her family. We also went to a free Joan Jett concert on Fremont Street. It was a great weekend!

I have been busy organizing things (not quite packing) for our next trip. My daughter and I are spending 9 days in Italy. We are crossing places off our bucket list (this is actually on her list). I’m so grateful we get to take this amazing trip to make memories and see a new culture. I plan on eating gelato and drinking espresso every day and she looks forward to fresh Italian pasta and pizza. We have a tour planned for almost every day also. Please pray for travel mercies (and patience on our 14 hours of flying).

Although it’s beyond hot here in Vegas, I do love the summers. We hang out in our pool a lot and go on several trips. Coming up I have a quick conference in Minneapolis, vacation on the beach in Florida (at mom’s condo), a conference in Denver, a lung cancer walk in San Diego, and probably another trip to CA to visit my son.

Hubby comes home in 2 days! He’s going to take care of the dogs while we’re gone then we get a few weeks together. We are definitely learning to enjoy quality time since our quantity is more limited but he’s making a great sacrifice to better his and our future.      I’m so blessed to have such an amazing man love and encourage me.

 Remember:Every day is gift and growing old is privilege not everyone gets to enjoy.

WCD

Today is World Cancer Day. It is truly a global event and was established on  February 4, 2000 and is dedicated to raising awareness of cancer and encouraging its prevention, detection and treatment, pressing government and individuals across the world to take action.
A group of lung cancer bloggers decided to honor this day by writing about some of our relationships with survivors of other cancers. The greatest inspirations to me are from my fellow survivors. No one can truly understand the ongoing trauma, anxiety, hope, and roller coaster of emotions better than another survivor.
Today I am going to share a little about my amazing friend Ali. I met Ali in 1994 when we both worked at Chevy’s Mexican Restaurant. I was a server and she was a hostess. She had this bubbly attitude and a contagious smile that made you happy to be around her. We weren’t very close at the time but I enjoyed working with her.
After a few years, we went our separate ways and I didn’t see her again until she bought a house on my street in 2008. She recognized me (12 years later!) and we started hanging out while our kids rode bikes on our street. We were mostly casual friends and only hung out occasionally until she saw me at the gym one day in 2011, with my bald head, working out with my daughter. I told her I was diagnosed with stage 4 lung cancer and she started crying.
It wasn’t until Ali was diagnosed with cervical cancer a year later that I felt like we kept being put in each others lives for a reason. To support each other, to cry, to laugh, to love.me n Ali               Ali2

Ali initially had a radical hysterectomy and was considered cancer free – YAY!!                But the beast returned exactly a year later. She then had chemo and intense external and internal radiation. I went with her to every chemo treatment, trying to keep her company and she was once again cancer free – YAY!!
BUT the cancer came back the next year. This time she had aggressive chemo in hopes of killing this beast that keeps ravaging her body. This trend of a new tumor popping up every December was getting old. She lost her beautiful, long hair and got a crap-load of other “fun” side effects but I’m happy to say Ali has been cancer free for 6 months!
She has a great husband and 2 sons that she fights for every day. Her life is different now, as all of us with cancer have to adapt to our new normal. Ali has always been relentless at the gym, an avid runner, and even competed in the Spartan Race. She now moves a little slower due to neuropathy but is just as kind, loving, and beautiful as ever.

Ali3                Ali family

Cancer has made us better friends. We have a bond that is unbreakable and I pray we both continue to be cancer free for a LONG, LONG TIME.

I love you Al.

I don’t make resolutions. They don’t work for me. Actually they don’t work for most people, but they continue to try. Just look at any gym in January and then compare it to February…big difference.
I’ve always been a fairly positive person. Being around negativity actually causes me to be very anxious and sometimes physically ill. Arguing, bickering, constant complaining, drama and gossip – it just drains your soul in my opinion. I try to eliminate negative energy from my life as much as possible. This became even more of a conscious act after being diagnosed with lung cancer.

Denali National Park in autumn, Alaska, USA, North America

Denali National Park in autumn, Alaska, USA, North America

I don’t know how many days I have left on this Earth with my family, I’ll be damned if I’m going to spend them focusing on all the crappy things in life. That’s not to say I don’t think of the bad, scary things. Of course I do; it’s human nature. I just don’t dwell on them especially if I can’t fix them. Although I do think most situations are changeable. Not my disease of course, but how I deal with it; how I act and react to it.
A lady in my bible study group told me she heard from a tv preacher that if you write down what you’re grateful for everyday – just 2 minutes a day- you will become more appreciative, content and at peace. (apparently there was a study) By purposefully reflecting only on the good things that happened that day, eventually it will become a habit and you’ll focus less and less on the negative.
So I thought “why not?” It can’t hurt. So guess what? I bought 3 small notebooks for a $1 each and I’m encouraging my daughter and husband to do the same. I literally gave my daughter her notebook during a commercial break on tv.

im grateful for
Full Definition of grateful from Merriam-Webster
1.  a : appreciative of benefits received       b : expressing gratitude
2.  a : affording pleasure or contentment : pleasing                                             b : pleasing by reason of comfort supplied or discomfort alleviated

It gives me a chance to reflect on my day. I acknowledge the things I didn’t like and would possibly like to change or do better, but I actually smile thinking about the good things and how many blessings I have in my daily life that may otherwise go unnoticed.

It’s easy to get caught up in a negative cycle. The world has so much hurt, pain, general disrespect for others, and so much we cannot control, but your thoughts…your attitude…how you treat others…how you respond to situations…that IS in your control. In fact that’s pretty much all you CAN control.

I plan to try really hard to continue doing this for at least 3 months and see if it helps me. I really have no doubt it will. Maybe it could help you too.

Remember friends…… every day is a gift. What are you grateful for?

I’ve become an efficient traveler and the queen of packing a lot of stuff into a carry-on bag. I try to avoid checking my luggage whenever possible. I’ve been involved in patient advocacy for lung cancer for over 2 years but this year I have rally racked up some miles!

southwest+airlines

39,066 miles that include 11 round trip flights

3 for pleasure and 8 for business. Of course I always have time to connect with other survivors and advocates so there is pleasure in every trip. That’s ultimately my favorite part of advocating while hoping to make an impact and educate others along the way. I get more hope and inspiration with each connection and it gives me more strength to keep making noise for those who lost their voice.

My son lives in California which is a 330 mile drive from me. I have made this drive 8 times this year bringing my total driving mileage to 5,280 (in addition to daily stuff). I’m so thankful I bought a Hybrid last year!!

My point of sharing this is to say thank you to all that have helped me along the way.
All of these people have helped make this passion of mine possible:

My Lord and Savior – for giving me the desire and strength to help others.

My husband Joe – who rearranges his work schedule and holds down the fort while I’m gone, and is steadily supportive.

My mom – who helps with Devin and feeding my dogs when Joe’s at work and cheers me on every step of the way.

My kids – for being resilient, flexible, and understanding.

My extended family – for your love, prayers and support.

My amazing onc Dr. V – for thinking outside the box and fighting for me.

ALA National office – for allowing me to share my story and fight for more funding.

Lungevity- for helping my voice be heard and letting me be a part of your mission.

Snow Companies – for investing in me and helping me help others.

Free to Breathe – for entrusting your event in my hands and coming to Las Vegas.

All my survivor friends – for giving me hope, encouragement, and never-ending support.

It takes a village and I couldn’t have done this without each of you.

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