It was one year ago today that I last ate inside a restaurant. My son and I went out to dinner with no idea what lie ahead. On March 17, 2020, our governor announced all nonessential businesses would be closing at midnight for 30 days. This included all the casinos. It was unprecedented and very eerie to see the famous Las Vegas Strip completely dark. They were ultimately closed for 78 days.

As the NBA, WNBA, and NHL began cancelling their seasons, the virus spread faster and was more deadly than we could’ve imagined. Italy began triaging patients and prioritizing those with the highest chance of survival. New York became a hot spot in the US. PPE was scarce and hospitals were overflowing with infected patients. This put all “non-emergent” surgeries on hold to make room for the critically ill. It was unimaginable to see tents in Central Park and parking lots, Navy ships being used as hospitals, and freezer trucks as morgues. It was scary for most, but terrifying for those at the highest risk. As a lung cancer patient on chemo, there was a slim chance I’d survive COVID.

After living with lung cancer for over 8 years at the time, the deadliest cancer in the world, I’d be damned if a virus was going to take me out. My family took all precautions very seriously. My parents were in Florida at the time. When they came home in May, they got tested and isolated for at least a week. When I did finally see my mom, we sat outside, 10 feet apart, and could not hug each other. Hugs are one of the things I miss most.

I have survivor friends that never left their house. Some still haven’t. Some wiped down every package from their food deliveries or left them in the garage for days before bringing them in. Some opted for virtual medical appointments and some even delayed important scans because it wasn’t safe for them to go. The rest of the world got a small taste of what those with cancer and other immune disorders go through every day.

We all had to make decisions on how this was going to affect us. I wear a mask every time I leave my house. I shop at less busy times, but I do all my own shopping. I have only met with friends a handful of times and it was always outside. I flew to Reno to visit my daughter and my husband and I drove to California to spend some much needed time with the ocean. I needed to find ways of being careful but still living my life. Some of us have less time on this earth as others and I try to spend it wisely. Dancing in my kitchen, floating in my pool, talking with friends, spending time with family…. making memories.

Gradually the virus seems to be slowing down in most states, but we’ve lost so much. In addition to the over 500,000 people that have died, more people are depressed, lonely, and drinking too much. Nevada still has the highest unemployment rate in the US. They just started opening things up to 50% capacity. This should enable more employees to go back to work. As a tourist city we want people to come to boost our economy but at the same time we don’t want people traveling here and bringing more disease. After being at 21% positivity rate for many months, we’re finally just below 6%. I hope those numbers continue to go down as more and more people get vaccinated.

In Nevada, those 55 and over with underlying conditions just became eligible for the vaccine. Nope! I’m still not in that group. Luckily I got my vaccines because I work part-time at a shelter. The most vulnerable are still not eligible in many states. This really is shameful and it not following the science. I’m incredibly grateful to be fully vaccinated and look forward to traveling soon.

I’m still taking as many precautions as I can but I need to see family and friends. I NEED to live my life. I will be in Reno in 2 weeks for my daughter’s 21st birthday. This is a milestone I never thought I’d see. I also just booked my flight (and dog sitter) to Florida in May to see my parents for my birthday. My husband will be flying there from NC too. It will be the first time I’ve seen him since December 28, 2020. It will be an epic birthday week!

While this has been a very scary and trying year I’ve tried to make the best of it. Lots of self-care and doggie time. It hasn’t been easy. I know some of my friends are struggling worse than others. Please know I’m sending you all love and can’t wait to hug you in person.

In most states cancer patients have not been prioritized to get the COVID vaccine. Why? It really doesn’t make sense and it most definitely does not follow the science. If you have lung cancer your chance of being severely ill, or dying, is greatly increased if you contract COVID. Much more so than the 25 year old, healthy grocery store cashier. Don’t get me wrong, as frontline workers they should absolutely be a priority as well. But why are those with compromised immune systems and other high risk residents not eligible until after healthy 65-69 year olds? That’s where we fall in my home state of Nevada.

I am EXTREMELY grateful for my part-time job at Las Vegas’s only animal shelter for several reasons, but at the top of the list is because it enabled me to be eligible for the vaccine as of last week. As a shelter, we provide necessary services for needy groups and individuals. We do so much more for the community than take in stray or found animals. We also have many programs that help low income families. Do I think shelter employees should qualify at this time in the vaccination roll out? Not necessarily, but right now I’m taking the win. Our health department has decided who gets it and when even if most of Nevadan’s do not agree.

I got the Pfizer vaccine. I’m thankful to Pfizer for many reasons (one of their drugs kept my cancer stable for 5 years). My arm was sore after a few hours and I had a headache in the evening. Today I feel completely normal with a slightly sore arm at the injection site. The process was smooth and there were firefighters, FEMA, and school nurses there to inject and move things along. I was in an out in an hour and they had us wait for 30 minutes after for observation.

I’ve already booked my 2nd appointment. I’m hoping more and more people will get the vaccine as soon as they can so we can TRY to find some sense of normalcy again. I want to travel and see my friends and family damn it!

I had chemo again yesterday. It was postponed a week since I had to change insurances again this year. My primary goal is to stay with my oncologist of 8 years so I’ve had to change insurance companies a few times.

Last year it was really challenging and my scans were delayed weeks. It was VERY frustrating. My new insurance allowed me to get my referral to my onc & my cardiologist through a telehealth appointment since I couldn’t get into my new PCP until February 1st. They then fastracked the approval in 2 days so my chemo was only delayed 1 week.

I just made my veggie soup for the week. My energy is draining fast today. Since the steroids only let me sleep 4-6 hours the last 2 nights I’m guessing I’ll be asleep by 8pm. My doggies are already snuggling with me. They’re the best!

Veggie soup

I’ve been really upset about the attacks at the Capitol building and all the anger and division in our country. I try not to watch or read about it too much for my mental health, but it’s tough. Zentangle has been a great help. If you’re interested please connect with my amazing friend Lisa to learn more. I also bought some new plants and had fun decorating new pots. And music. Music always helps.

I plan to continue my goal of riding my spin bike at least 4 days a week. My lung function is terrible and my heart rate gets high pretty quickly. I don’t really think my endurance has improved. I mostly do a fairly slow 15 minute ride at 60 rmp. When i push myself my hr gets too high and my breathing is pretty rough. So I just cruise along. At least I’m moving.

As always thanks for reading and thanks for your support. It really helps get through the tough days. Wishing you all love and peace in these crazy times.

9 years ago on September 27, 2011 at approximately 2pm, I was given the explanation of my severe back pain. It had been going on for about 4 months off and on, but eventually could not be ignored. Diagnosis: adenocarcinoma of the lung, stage 4 with metastases to my spine, lymph nodes, pelvis and ribs. I was 40 years old and had no risk factors. I just had lungs.

For 9 years, 3,285 days I have thought about dying. I’ve always tried to remain hopeful, but also realistic. I never thought I’d be here 9 years later. Hell, I didn’t know if I’d live another year. It was a very scary time. My family was devastated. I was terrified, lonely, and wondered how my kids would be after I left them.

Being connected to a large community of lung cancer advocates reminds me of the fight we need to continue. To keep fighting for research funding, advancing treatments, and for equity in healthcare. It also keeps you in some state of grief constantly. I hear of my friends dying weekly, sometimes several days in a row. These aren’t just my friends, they are my family. We share a special bond being connected by a heinous disease. So ya, I think about dying every single day.

I have been lucky enough to respond exceptionally well to every treatment I’ve been on. I first did chemo, radiation, and a few surgeries thrown in. Then we discovered my cancer is positive for the ROS1 biomarker. These are the rogue cells that drive my cancer to grow. I took a targeted therapy, crizotinib, for almost 5 years before having slow progression. A new biopsy didn’t give a clear indication of the resistance so we decided to add chemo to that drug. What we hoped would get me to the end of 2018, has still been working 28 months later. I am blessed indeed.

I had a big party at my 5 year cancerversary. I was humbled by the friends and family that traveled and all my local friends that showed up to celebrate. Next year I’ll be turning 50 and celebrating 10 years of survivorship. I’m not sure what we’re doing yet, but we will definitely be celebrating again.

I’m so grateful for my family’s endless love and support while dealing with their own emotions. Having a disease that kills most of it’s prey in the first year, I’m also extremely grateful to research. ROS1 only affects 1-2% of lung cancers. Because of the small population not as much research has been done on it as other types of lung cancer. Much more is needed if I’m going to get another 9 years.

If you’d like to help, I’m asking you to donate today any amount ending in 9 – $9, $19, $99… Every dollar goes to advance research for ROS1 cancers.

https://www.facebook.com/donate/965079063981388/965079070648054/

As always, I thank all of you reading this for you love and support. I could not do this journey without you.

It’s that time again. I had my 3 month scans last week and saw my oncologist yesterday. Since that’s the most important right now, I’ll start with that one.

Brain is still, and always has, remained cancer free. WOOHOO! There might be one nodule in my lung that is slightly bigger but not enough to be concerned about. I have a lot of scarring in there, a different doctor read it, different machine, too many variables. My onc said “So I’m just going to ignore that for now.” So I said “Me too.”

Overall, great news! So I will continue on my current treatment of daily crizotinib (TKI that controls my ROS1 mutation) and pemetrexed (chemo) every 4 weeks. I’m so grateful that most treatments have worked longer for me than the average lung cancer patient. 7 years on crizotinib – the average is 18 months, and 28 months on chemo. We will scan again in 3 months.

I also met with my PCP Thursday morning followed by my cardiologist. My PCP first referred me to a cardiologist in June just to check on my ticker. I’ve been on chemo a long time and it was more precautionary. Well my EKG was good and my echo was good but I mentioned I could feel a flutter every now and then and it would make me flushed. So..that resulted in me getting to wear a halter monitor for 24 hours. Fun!

The results were I have SVT (supraventricular tachycardia). Basically my heart decides it wants to beat really fast for a few beats. We did a bunch of blood work to find the cause but it seems to be idiopathic. I only had 6 episodes in 24 hours but some were when I was sleeping. So unless I was having a really good dream 🙂 we don’t know the cause. My blood pressure is great and my heart rate is generally 78, but did get up to 190 during these episodes. For now we’re going to follow up in 6 months unless it seems to increase.

One thing leads to another. My labs showed my LDL (bad cholesterol) is a little high – 113 and they prefer under 100, but all the other numbers are good. My cardiologist wasn’t concerned so we will also check that again in 6 months. My diet and lifestyle don’t indicate I could really do anything to bring it down but I’m going to try more fiber and hope to just poop it out 🙂

My PCP is very thorough and I really like her but I now have all kinds of fun screenings to do: Mammo, dexa scan, and a fun poop test. She suggested a colonoscopy but we opted for putting poop on some slides first and go from there. I don’t think I’ve ever said “poop” this much in one blog. Lucky you!

I’m happy to be getting old enough for other issues to pop up, but they are an inconvenience. I remind myself every day that not everyone gets to grow old. It is indeed a privilege. I will be celebrating 9 years of living with this insidious disease in a few weeks. I have spent the last 3 cancerversaries with Shelly – I miss her. No traveling for us.

I’m still working 3 days/20 hours a week. I really enjoy being able to help my community and to interact with others even though it’s mostly over the phone. Mom and I have a few pool days a week and I’m going over for shrimp & bacon tacos tonight. I can’t wait!

Our awesome Vegas Golden Knights made it to the Western Conference Finals so that’s super exciting. First round is tomorrow night then hopefully onto the Stanley Cup Finals. GO KNIGHTS GO!

7 years ago this week I started on xalkori. It’s a tyrosine kinase inhibitor (TKI) which puts the breaks on the rogue cells driving my cancer to grow. It wasn’t until 18 months after my lung cancer diagnosis that we discovered my cancer tested positive for the ROS1 biomarker. This was a game changer for me.

ROS1 is only present in about 1% of lung cancers. I’ve always been a little different and not afraid to stand out, but this was not an area I wanted to be unique in. Because of the rarity,  that also means less treatment options.

In My 2013, I had already had many rounds of chemo and radiation and 3 surgeries.  I had 16 tumors in my lungs and more in my lymph nodes. We were really counting on this drug to work its magic.  And it did!

A scan at 3 months showed significant reduction in tumors.  A scan at 6 months showed NED (no evidence of disease). The side effects are mild compared to chemo but has taken a huge toll on my GI system.

Xalkori continued to control my cancer for almost 5 years.  I started having slow progression and had 2 possible clinical trials as options; no other approved drugs at the time. Because a biopsy didn’t reveal a clear direction we decided to add chemo to xalkori thinking it was still working somewhat.

I have now been on that cocktail of xalkori and chemo for 2 years this week. When I started it we were hoping to get through the end of the year -2018. I hate the fatigue chemo causes but you can’t argue that it works well for me.  It has bought me time.  When it quits working there is now 1 other approved drug that may be an option and another in a trial.

SCIENCE is important. It affects every single one of us. I’m so grateful to researchers. I’m alive today because of research. I have been blessed to see many milestones with my children over the last 8+ years and made countless memories.

Thank you all for going on this journey with me.

If you’d like to contribute to the ROS1 cancer model project please click here.

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Monday was my 30th infusion of my current toxic cocktail.  Alimta, along with 3 other pre-meds for side effects, are pushed through my veins through a power port in my chest every 4 weeks. In addition to that I’m still taking a targeted therapy to keep my cancer controlled.

The brain fog and fatigue has set in.  So has some lower back pain. I have about 5 days of laying/sitting around. Unfortunately I don’t have the energy to do much else. I’ve been doing stretches and I do yoga daily but I had to use Deep Blue yesterday which seems to have helped.

I’m very grateful and lucky these drugs are working so well for me.  Most of my treatments have worked much longer for me than the average lung cancer patient. Research and new treatments are the reasons I’m still here fighting and living well with stage 4 lung cancer 8 years and 7 months after diagnosis.

Like many of you I’m also self-isolating because of COVID-19. I’m on day 40something. I just had my oncologist write a note for my job stating it could put me in grave danger if I were to contract the virus.  Most employees are still working from home but they’re trying to make a plan to move forward at some point.

I’m used to being alone but this is different.  I go to the store once a week. Wear a mask and keep as much distance as possible from others.  I’m not crazy cautious. I don’t wipe everything down,  I don’t change my clothes when I get home.  I just wash my hands like I always have.

Not being able to just go places,  out to eat, and the craft store is hard. Missing several trips already is disappointing. Missing my monthly Bunco games. It’s gotten so hot already I haven’t been walking the dogs either. This is usually my favorite activity of the day. This why I’m so excited we can hang out in the pool now. My mom came over 2 days in a row to float around.  It’s nice to just talk and float.  The water is so calming and peaceful.

My boys keep me company and Levi has turned into a great nap partner too. They both like doing yoga with me.  They can’t resist being in my face when I’m on the floor at their level.

My husband is still working in NC and is hoping to be home sometime in May. He left January 7th. I want him home. It’s been too long. I miss having someone to cook for, playing games and dancing around the house.  And thankfully the golf courses are opening up so he’ll have something to do outside the house.  We love doing things together but we also need our separate activities.

I hope you are all doing well during this crazy time.  Several cancer patients have said the rest of the world now knows our daily fears.  The worry of catching something that could take your life.  For those of us with compromised immune systems,  this our worry every day.

We aren’t all in the boat.  We’re all facing different challenges right now.  It could be health,  work, money,  family,  just the unknown. Be kind to one another. Find the blessings in each day.

 

 

4 years ago my daughter and I got matching tattoos for her 16th birthday. Not something I would have agreed to before having cancer but hey…. life is short. Nothing like a terminal illness to remind you of that. It was her idea and every time I look at it I am reminded of her. I’m so proud of the smart, funny, adventurous, and kind young woman she has become. She is such a free spirit and has always been a joy to be around (well except for those few teenage years!)

She was an easy baby, so fricken smart, and loved to learn. She’s a lot like me (whether she likes it or not) but we’re also very different. We both love science although these are her hardest classes in college. She is fascinated with the brain and mental illnesses and disorders. I am an anatomy geek. I love the human body and I’m always amazed how it all works. I love yoga and exercise, she does not. I like reading for fun, she does not. We both enjoy being in nature and love dogs.

We both love music and can’t go a day without it but our tastes are different. We have been to many concerts and festivals together. She is a great travel partner and we fell in love with Italy together. We’ve also been to the Bahamas, Hawaii, NY, and DC together along with many beach trips to Florida and California. We became very close and I miss her so much now that she’s in college. I know our goal is to love and raise independent children so they can become happy and productive adults, but I still want to hold that sweet 5 year old that was always happy to see me.

She just turned 20 and it was the 2nd birthday we didn’t spend together. The 2nd year I could not make her chocolate chip pancakes and watch her blow out her candles. She has a new life now in Reno with great friends and is finding her way. I have no doubt she will make a huge impact in this world. Her passion to help people is a beautiful thing to see. I’m proud to be her mama and to have played a role in this amazing human’s life.

The tattoo is also a great reminder to believe in myself. We all need something to believe in especially when things get tough. Believe in God. Believe in love. Believe in hope. I thank her for that gift.

 

I had chemo #28 yesterday.  I walked away with the usual steroid-flushed face and hiccups. I work today from 10-4 and I’m currently awake at 2am. I should fall back to sleep soon for a few hours before needing to be up at 8am. I hope.

I usually crash tonight by 7pm and will be down for the next 5 days. After today,  I’ll go back to work Sunday.

I’m really liking my job.  There are several different programs and there are different screens used for each one in the computer.  I check in and process all the transactions handled in the vet clinic. The computer system is not user friendly and has a lot of wasted steps but I’m finally getting them all down. With LOTS and LOTS of notes!

I was out of town all last week for 2 separate advocacy events.  One in CA (yay! My time zone) for LCFAs media and advocate training workshop.  I learned a ton and I’m excited to implement it soon. The other was in GA (boo! 3 hours ahead). This was a NLCRT summit to address the stigma associated with lung cancer and how to change the conversations. Very informative and I’m hopeful the committed people in the room will take action on this soon.

I’m also on the planning committee for our inaugural ROS1 summit in Denver in May. It has been a lot of work but I’m enjoying it (I love to plan and organize things). We have an amazing team and I really think it’s going to be very educational and empowering and a great bonding experience for the attendees.

My mom and I decided we are going to Hope Summit this year.  We missed last year but this will be my 5th year.  Looking forward to it.

So… that’s my last month.  Crazy busy but very productive.  Kind of looking forward to laying around the next few days.  Ask me how I feel about that on Saturday 🙂

Yep! I am officially a part-time employee at The Animal Foundation. I have been volunteering with them for about 3 years in several areas. I walk dogs, help with play group, I love off-site adoption events ( I often post pictures of those cute little guys), and in the vet clinic. A few part-time positions came open in the vet clinic and they asked if I was interested. So now I get paid for my position!

They are aware I have cancer and am getting chemo. That’s not something I would disclose to most employers from the start, but they already knew about this as a volunteer. They made my schedule around my chemo schedule and conference/travel schedule too. How lucky am I? I get along great with others in the clinic and I think it’s going to be a great fit for all of us. And I get to see LOTS of furbabies!

A month before I was diagnosed with metastatic lung cancer, I had just graduated and became nationally registered as a radiologic technologist. I was SOOO excited for my new career! I’ve always been a “helper” and I’m a total anatomy geek so this was the perfect job for me. Cancer came along and not only tried to take my life, it stole my career and many future plans.

Having spine, heart, and lung surgery, plus radiation to my spine, has left me with pain that does not allow me to utilize my education. I have had a few on-call positions and consulting jobs over the last few years, but this is the 1st regularly scheduled, clock in & out job I’ve had since starting school in 2009. Crazy!

I’m clearly not in a wheelchair, but cannot stand for hours. I NEEDED to find meaningful ways to spend my time and energy. I love volunteering in my community and enjoy spending time with the elderly, homeless, and of course animals. I highly recommend volunteering to everyone. It’s so fulfilling and you get so much more out of it than you put in. And you may even get a job. There are a ton of food pantries that need help and I love serving meals at the Las Vegas Resuce Mission. Food is such a basic need that too many people are going without.

And now for my PSA…

Please spay and neuter your pets. It’s not only the law in most states, it’s beneficial to your pets too. It controls the homless pet population, it helps prevent or reduce the risk of many diseases and helps with behaviors too. Who doesn’t want our pets to live longer?

 

 

Lung Cancer Foundation of America

Raising awareness and funds for lung cancer research

Lung Cancer Foundation of America

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