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.

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

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