He was the best guy. Our buddy for 12 1/2 years. I’ve been trying to write this for 2 days, but our hearts are broken.

It’s hard to believe this guy was only 6 pounds when we brought him home. He’s the only dog I’ve ever gotten from a pet store. I HIGHLY advocate for adopting a rescue, but we went in to “just look”  when we were shopping for bar stools and he picked us. He ran right up to Joe and our hearts melted.

He was just so good. The easiest dog to train and he listened so well. He had issues with other dogs, but that was our fault for not socializing him earlier. He followed Joe everywhere and loved being near the family. When he was little he would sleep under our bed until he could no longer fit.

He hiked with us and swam with us (even though he hated the water). He was a talker. He reminded me every day when it was time to eat by yelling at me haha. He loved to go for walks, didn’t like the car, and was a brother to Priscilla (who we lost 6 years ago) and Jake – the annoying little brother that just wanted to play with him. He tolerated Jake and would chase him occasionally and drag his caterpillar around.

He loved all toys with squeakers. If the toy had a face he would first chew off the nose and eyes and then remove the squeakers. Sometimes when I’d come home he’d have 10 toys scattered all over the floor. He was always so excited to see us when we came home and would bring you a toy. He would literally whine while climbing on Joe after he’s been gone a long time. He was so funny and gave us millions of laughs.

Four months ago he was diagnosed with congestive heart failure. He’s been on multiple meds to slow it down, but it wasn’t very effective. Joe says it’s because he had such a big heart. We knew his time was short but was hoping he’d hold on until Joe came home in a few weeks. It absolutely crushed his heart that he could not hug him one more time and be with us at the end. But we both talked to him and Elvis knew his dada was there.

He was a special boy and no one will ever have eyes like his. So kind and full of love.  Thanks for picking us buddy. We love you so much.

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I met Ali in 1994 when we both worked for Chevy’s Mexican Restaurant in Vegas. I was 3 years older than her. She was a hostess and I was a food server. We weren’t close by any means but we were friendly and talked a lot at work. Ali was funny, cute, loud, and fun to be around. Her laughter sucked you in.

After a few years, I moved to another location, Ali left the state, and we lost touch. Fast forward to 2009…one day my son came home from riding his bike and said “A lady down the street said she knows you. Her name is Ali.” We bought a house on the same street! Over time we talked and our kids played together but we were both busy with life.

I was diagnosed with lung cancer in September 2011 and went through harsh treatment and 4 surgeries over the next 18 months. I’m not sure how it came up, but in December 2012, Ali told me she had cervical cancer. She was 38, a beast in the gym, running 5-10 miles a day, and negative for HPV. Just like me, she had no risk factors – just bad luck in her diagnosis.

Like I said earlier, Ali and I were not super close years ago, but we bonded over cancer. It has a way of doing that. We talked for hours about our fears, our families, and how we were going to beat this. I went with her to her chemo infusions and to Houston for a 2nd opinion. She visited me in the hospital and gave me a cute duck pillow to hug while I coughed after lung surgery. Her and her kids came to my walks to support me. We became so much closer and I loved her like a sister.

After her initial surgery, she seemed to have beaten the nasty beast, but a year later it returned. She had chemo and radiation that caused fistulas and many long term side effects. Once again, she was cancer-free. Until she wasn’t. She went to UCLA and entered several clinical trials involving immunotherapies. They only worked for a short time and caused many debilitating side effects for her. In July 2019, Ali and her family were told there was nothing left they could do.

Ali was confined to her bed for her last 3 months on Earth, unable to do much on her own, but she always kept her sense of humor and wit. She had a smile that would light up the room and the biggest blue eyes. I regret that I hadn’t seen her in several months but we were the type of friends that could go months without talking and have a 3 hour lunch to catch up. I visited her at her house and then almost daily when she entered the hospital in the beginning of October.

I’m happy I was able to help advocate for her and help her remember and understand what her drs would say. It was overwhelming for everyone and sad knowing what was to come. On November 1st she entered hospice once the hospital could no longer control her pain.

Her family came from California and many friends and church members came to keep her company and let her know how loved she was. I think/hope this was a great comfort to her husband and two sons. I was honored to get to know her sisters, brother, and other friends. I just wish it was under different circumstances. She had a lot of great, loving people in her life. All our hearts were breaking watching her slip away, but we wanted nothing more than for her to be pain free and at peace.

Today, November 14th Ali was welcomed into heaven and her broken body was made whole again. She made so many lives better just by being in them.

Anyone that has met Ali knows she’s sassy and feisty and doesn’t give up easily. She was passionate about DoTerra, loved Halloween, loved working out, and competed in Spartan races. She was quite the badass! We were constantly amazed how she was able to hold on for so long. But do not mistakenly think she lost this battle. For 7 years she fought with everything in her and tried every treatment option available. In the end, she won. She is free.

Ali was a loving mom to Braydon 17 and Brennan 13, and devoted wife to Zoltan. She was a sister, daughter, aunt, friend, and a child of God. We will always love you Alexandra June and we will never forget you.

June 9, 1974 – November 14, 2019

Thank you for being my friend.

 

 

 

It’s been an emotional few days. For the most part I feel like I’ve accepted my disease and I have a good handle on my emotions. But as in life, there are many ups and downs when living with a terminal illness.

My husband is home for a week before leaving again until Christmas. We’ve enjoyed hanging out and sharpening our charades skills with the help of margaritas. Good times!

I also got to spend two days with my mom in the breathtaking Zion National Park in Utah. If you have never been, you should go. It’s still too warm to have fall colors yet (we found only a handful of pink and orange trees), but it is absolutely gorgeous. We did a few hikes and saw beautiful wildlife. Surrounding myself with nature and disconnecting is the best way for me to realign and let shit go.

I found out while I was there that we lost another young mom to lung cancer. She was 43 and had 3 young sons. These losses always hit me hard and my heart breaks for their families. Please pray for Erin’s family as they learn to navigate their lives without her.

I also got a phone call from my husband about our dog Elvis. I could tell he was scared and needed me home. In July we learned Elvis has congestive heart failure and he was put on multiple medications to help with the fluid and blood pressure. It has seemed to help until Wednesday. He has been the best dog for 12 years and it breaks our hearts to imagine him gone. The vet upped his meds but said his heart disease is very advanced and he might be around for another 2-3 months. We just hope he’s still here when Joe comes home in December. Elvis is Joe’s dog. His buddy. So that was a really sad morning for us.

Thursday afternoon I saw my oncologist to get my latest scan results. He said “I don’t have another patient like you.” I asked if that was good or bad. I have responded really well to all of my treatments and usually have a much longer response than the average patient. I’m still here 8 years later after all! 17 months of chemo on top of 6 years on xalkori and my disease is still stable. Great news! I’m so thankful, for many reasons, but I don’t think I could’ve handled more bad news that day. I gave him a hug and told him how much I appreciate him.

So the roller coaster continues….. Thank you all for your love and support.

 

Today is another big milestone for me. September 27, 2011, around 2pm, my mom and I were told that my 4 months of relentless back pain was due to tumors impinging my spinal cord. I had stage 4 lung cancer and needed immediate surgery to help prevent paralysis. I was scared, devastated, overwhelmed, and terrified to tell my husband that our plans for our future were not likely going to happen. How long will I live? Who would raise my children, age 19 and 11? How would my mom deal with losing her only child? I was 40 years old with no known risk factors, just graduated college, and in the best shape of my life.

I’m a researcher by nature and tend to throw myself into whatever I want to learn. First, I learned my chance of living 5 years was only 2%. Not very encouraging. So, I spent the next few months educating myself about my disease, ways to live longer, and connecting with other survivors. I learned so much from them; more than my first oncologist. They helped me not feel alone and pushed me to get biomarker testing (which my dr told me nothing about). 18 months after my diagnosis I finally learned I had the ROS1 mutation – it is what’s driving my cancer to grow. It is only found in 1-2% of lung cancers and therefore has only one approved drug for me right now (another was just approved, but I’m not a candidate).

The drugs that target ROS1 are called TKIs and they do not work forever. They do not cure my cancer, they just put the breaks on it, but eventually the cancer becomes resistant or develops a new mutation. This is why I began chemo again last May. When it stops working, I will need a new drug. Lorlatinib is an option, but it will depend on the mechanism of resistance. Another drug that I had high hopes for, called Repotrectinib, is still in trials, but just announced the phase 2 requirements. I no longer meet those requirements since I’ve had chemo twice, but maybe they will add another arm at some point.

I’m always connected with other super-survivors and top docs to find my next Plan B. In the 2922 days since my diagnosis, I have thought about cancer every day. I think of my own mortality almost daily and have suffered painful losses in our lung cancer community. What’s new? What are my possible options? How do I keep my body and mind strong while enduring these constant treatments? I have been in constant treatment for the entire 8 years and will be as long as I’m alive.

I recently touched on the growth of the ROS1ders (my biomarker group) and the projects that have been accomplished in just a few short years. Click here to see more about the project and how it is already making a difference. To date, we have raised almost $350,000 with a very small group of people. This research may not help me in my lifetime, but it’s a way for me to contribute to the progress and help future ROS1ders live longer lives. This is really all we want – more time. More time in the hopes that another viable treatment will come along. Please help me do this.

I have a $1000 goal I want to reach in just 7 days. I have over 800 Facebook friends, at least 100 that I communicate with regularly; I know we can do this! If you can all donate at least $10, I will reach my goal. Here’s the link to my personal donation page.

I hate fundraising; it’s not my forte. I’ve stepped away from it for awhile because I felt like I was always asking for money. And honestly, the longer I live, the less people donate. I am alive because of research and the grace of God. I feel I still have work left to do and research is the key to buying more time. I have so many more memories I want to make with my family. My next big trip will be Italy and Spain with my daughter next summer.

Thank you all for your love and constant support. I could not ride this journey without you! These are just a few things I’ve done in the last 8 years.

 

I just wanted to announce our private Facebook group, for my very rare type of lung cancer (ROS1), just hit 500 members! When it began in May 2015, we were SO excited when we hit 50. This type is only found in 1-2% of lung cancers.20190918_184750-1

At the time I had been living with lung cancer for 3 1/2 years and had only met 5 others in person. With members in 24 countries, we have not only been able to share treatment experiences and support but watched advocacy grow in other countries where none existed. Support groups have been created, cancer coalitions, and growing collaborations with institutions worldwide. It is proof how valuable these groups for specific diseases can be.

The group was originally started because a small group felt something needed to be done and they took action – the ROS1ders were born. This mutation tends to occur in younger people and predominately women – Many in their 30s and 40s with young children. Since we are such a small population few researchers were studying us because it’s very expensive and hard to get enough together to even do trials. So, the first step was gathering the people.

About to get a little science-geeky…..

After partnering with the Addario Lung Cancer Foundation, Dr. Robert
Doebele at University of Colorado Cancer Center, Dr. Christine Lovely at Vanderbilt-Ingram Cancer Center, and Champion Laboratories we were able to start the first-ever-patient-initiated clinical trial. We have developed 4 new cell lines in Colorado, doubling the amount that previously existed, and have started 3 PDX mouse models in Tennessee that are still in the process of growing.

It was extremely important to us to accelerate research, so all of these cells are able to be shipped to any other facility at no cost for them to do further research on ROS1 cancers. So far donations have been shared with 5 other facilities and have been used in 3 published studies about ROS1 biology, resistance, and biomarker testing. I truly believe this is the wave of the future and the only way to move the needle forward for rare cancers.

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Active patient groups are popping up everywhere. It’s very exciting to see the growth and play a small role in it. We truly are better together! I am eternally grateful for those that work so hard to manage our group and are making an impact in so many lives. You have no idea what goes on behind the scenes and how much time they invest.

Research is critical to finding more treatment options and discover why cancers become resistance to drugs. It’s how I will continue being able to live with this insidious disease.

Please look for another blog in the next few days about an important date for me and how you can help me celebrate.

I’m inspired by many people. Living with stage 4 lung cancer isn’t easy, as you can imagine, and at times it’s a crazy rollercoaster ride. Not just emotionally and mentally, but physically too. I’ve always lived a healthy lifestyle and been very conscious of what I put in my body. I was a runner before lung cancer took part of my lung, but I have tried to continue being active and exercise.

It’s hard for many of us to stay motivated. Life is busy and tends to get in the way sometimes, so I go through spurts of going to the gym and staying active and times I don’t. I envy those that can make it part of their everyday routine. We do enjoy paddle boarding, swimming, walking my dogs, and I do yoga daily but it’s not enough.

There are so many survivors I know that inspire and motivate me. They make me want to do more. Be more. Help more. Be better. Most of them probably have no idea, but they inspire me. Strong women inspire and motivate me. I envy them and they push me to work harder without even knowing it. If you have shared your journey and work hard to stay strong and as healthy as possible, then you are one of those women. So thank you!

I can definitely tell the last 16 months of doing chemo every 3 weeks has taken a toll on my body. I’m weaker and I feel older. I get out of breath and tired just from walking my dogs for 30 minutes. I really want to build my endurance and get stronger. I also have a lovely little roll around my waist I need to get rid of. Damn gummy candies!

I have an amazing support system between family, friends, and the lung cancer community so I need your help. Help me be accountable. My husband is leaving again and it’s easy when you live alone to get lazy. But I really want to use the next few months to get back on track and be more consistent. I do lose 6 days with every chemo infusion – which makes it REALLY hard to get back into a routine – but other than that week, I have no excuses.

I went to the gym yesterday and did legs, butt, and abs and I am quite sore today. But that’s a good thing! I’m about to go do arms and back before the family comes over for a BBQ. My goal is to get back to kickboxing at least twice a week for the dreaded cardio I need. I really love the classes, but my lung function sucks so I get dizzy when I push myself too hard, but I don’t know how to not go 100% when I’m there. I’m still trying to adapt my mind to go with my altered body.

So say a few prayers, cross your fingers, do a little dance that I stay motivated. I love my tribe!

Yesterday I was still lying on the couch recooperating from chemo.  Today I feel about 90% myself and I’m at the airport at 5am.

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I’m headed to the Hill with Go2 Foundation and 130 others to get more research funding and support for women with lung cancer.  Why is it on the rise? Especially in the under 50 group? Before you say “why women?” Know that this research will help everyone.

You don’t need to go to DC to help.  You don’t even need to leave your house.  Please call or email this Tuesday July 23rd! Just click here.

Can’t wait to see my tribe and make some noise! Watch for updates.

When you are absorbed into the cancer community you make many friends and A LOT of acquaintances. We support, guide, and love each other. We cheer each other on, cry together, mourn together. With the majority having a stage IV diagnosis, we know how this ends for most of us. In my world, I know someone that dies weekly, sometimes daily. Even on the days I am able to go hours without thinking about my cancer, these deaths throw my mortality right back in my face. My heart breaks for the families left behind and the lives cut short.

Amidst the tragedy and pain, there is hope. There are new discoveries and treatments on the horizon and that’s what I hold onto. Hearing good news from my friends makes me smile and heals my heart just a bit. So I share my good news hoping it does the same for others.

The cancer invading my chest is stable and continues to be controlled by the combination of chemo and crizotinib. This makes me very happy!

Brain MRI: “unremarkable” – yes, that’s a good thing! I am one of the lucky ones. It is extremely common for lung cancer to spread to the brain, but in over 7 years since diagnosis, I have not had to deal with this issue.

Thank you for the continued prayers and support. I have a busy 5 weeks ahead with 5 trips planned. Some work and lots of fun!

I often say ” I hate chemo.” This is true on so many levels. Every 3 weeks I get toxic chemicals pumped through my body. It does it’s job. It has held my cancer stable for 13 months on this regimen and I’m so grateful. 13 months of more time, more love, more advocacy, and more memories.

It has also given me 13 months of more fatigue, more brain fog, more thoughts of dying, more memory loss, and forgotten words.

It’s par for the course on this journey. Living with a terminal illness requires a tricky balancing act. Not just emotionally – I try to be realistic, but also hopeful, but also learning where to best use your mental and physical energy. Shower or sit outside with my dogs? No energy for both. Try to make a few phone calls or read? I don’t usually have the mental bandwidth for either in the 5 days following chemo. I’m basically a slug.

This week I had to have my quarterly scans (chest CT and brain MRI) 5 days after chemo. I’m normally feeling about 70% normal by this time, but that morning was still pretty rough for me. I’ve been going to the same imaging center for years and have had mostly the same techs every time. Ron used to do my CTs, now he does my MRIs. We went to the same tech school, know a few of the same people, and I enjoy talking to him. He’s a great tech and always makes me feel comfortable. I hate the coil on my head during the MRIs and he knows I close my eyes before it goes on and I don’t open them for 40 minutes when it comes off. Lana is my new CT tech and she’s very sweet also. Good techs can make all the difference especially when you feel like shit.

Then, almost like magic, the dense fog disappears, the energy and appetite return, and I feel human again. Ahhhh what a feeling. Tuesday mornings I always scan my body and brain before I even open my eyes, and ……..yep, back to normal on day 6. I’m able to cook, eat, shower (woohoo!!), swim, and actually use my brain too. At least for the next 2 weeks when I do it all again.

The things most take for granted…. I do not. I hope you don’t either.

Today was chemo #16 for my current run. I’ve been doing this every 3 weeks for a year now. When I started it, I was hoping it would at least get me through 2018. To buy more time. To say I’m grateful it is still working is an understatement.

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Notice the little cover hanging over my chemo bag? That cute little thing is thanks to my friend Crysta (for mailing them) and her mom for making them (she is also a cancer warrior). I can’t cover the actual chemo bag but they let me use it on my pre-meds. I know you’re jealous you just have a plain-Jane bag.

In case you didn’t already know: It’s nurse’s week. Nurses are the backbone in all healthcare settings; the unsung heroes. To be honest, they are the ones keeping us alive half the time and the other half they are holding our hands and bestowing compassion. They smile and do their best to brighten your day. Many times they skip lunch, skip the bathroom, and work overtime to finish charting. Oh and don’t forget the occasional poker game held in the break room (ya right!)

To thank my funny, compassionate, and dedicated oncology nurses today I brought them some fresh berries and of course some cookies. Did you thank a nurse this week?

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