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!

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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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I keep thinking I need to write a blog, then it gets away from me. There’s been a lot going on.

My son moved back to Vegas last May , then his girlfriend and her 2 boys followed in July. I have really learned to love these 2 boys and enjoying spending time with all of them. They both got jobs right away and I’m proud of the life they’re making for themselves.

My daughter started college in August. That was a hard adjustment for me. I gained her “freshman 15” by eating and being sad for the first few months. I’ve lost half of it but need to make more of an effort to get healthier again. Mentally, I’m much better and it’s great to see her learning and navigating adulthood. She’s got a good head on her shoulders and she’s the perfect mixture of dedicated student and fun socialite. She is majoring in biology and is going to be a Physician’s Assistant in psychiatry. Proud mom indeed!

In December I started house hunting. It was initially to narrow down neighborhoods and begin the official looking in February when we were selling our rental property. But I found a house that checked all our boxes: RV parking, near a park (my favorite park actually!), a 3 car garage, and a pool. So we made an offer and it closed on February 8th. The previous owners needed to rent back a few weeks and we had 5 weeks of remodeling to do. After a quick trip to NC to see my hubby, I just moved in last week. My dogs had a rough few days adjusting but they’re doing better now.

We took out walls, updated cabinets, created a 9 foot island, removed tile, wood , and carpet and put in all new spc wood flooring throughout (it’s waterproof and scratch proof), all new baseboards, and paint. The island was tricky so we had to dig up concrete to add new electrical and plumbing, but things actually went smoothly with no disasters. We also install pendant lighting above the island and added some recessed lights. The backsplash won’t be in until next weekend- I had to stare at a few pieces before I could decide. Once that’s done I promise to share pictures. Thanks to my husband, I finally have my dream kitchen.

If you’ve read this far your attention span is longer than mine, so thank you. My blog would not be complete without a cancer update. Last week my scan showed continued stability so I’m continuing chemo every 3 weeks. I hate the fatigue but I’ve learned to roll with it. I food prep and get all my errands done in the days before and lately I’ve been pushing myself to do something every few hours so I don’t sleep 20 hours. It seems to be helping.

I have a lot of trips planned the next few months. Going to Florida to help my parents move into their new house in 2 weeks, then CA for a mini vaca with my daughter and husband, driving my daughter’s new car (yet to buy) back to Reno with her and getting her settled into her new house in June, CA for Don’s 10 year celebration in June, DC in July for LCA hill day, and hopefully Barcelona for WCLC in September. Living life is important. I love traveling and I love helping others. Whenever I can combine the 2…. that’s the best.

 

If you’re attending the Life and Breath Rally on April 26, here are some of the documents you might be interested in becoming familiar with before visiting your members of Congress.

L_B_FINAL_Letter_Congress_4-26-18

L_B_FINAL_LC_Caucus_4-26-18

L_B_FINAL_Facts_4-26-18

 

First let me start by saying how grateful I am to have options. Although I wish the best option would just slap me in the face and say “Pick me!”

To read my latest update click here

 

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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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?

 

life and breath: outliving lung cancer

for the terminally optimistic

Lunging it up. Fighting lung cancer at 22.

Living with stage IV lung cancer - By Lysa Buonanno

Emily Bennett Taylor

EmBen used to kick butt on the volleyball court, now she's kicking cancer!!

Every Breath I Take

a blog about my journey with lung cancer

A Lil Lytnin' Strikes Lung Cancer

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Gray Connections

Perspectives on Lung Cancer, Brain Science, and Other Stuff