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?

 

 

Keeping it real. Chemo fatigue set in last night. I rotate from bed, to couch, to backyard swing. Trying to stay hydrated but nothing tastes good.

My dog is great at lying around with me but he gets bored too and misses his walks. These are some of the longest days ever. I try not to nap so i can sleep all night but I’m not always successful.

The brain fog sucks. Can’t read. Hard to follow tv. Scroll through Facebook mindlessly. I’m not looking for sympathy i just wanted to show the other side. I got so many “you look great comments” 2 days ago but by Monday… after no shower for 5 days, oh boy! The back of my curly head becomes a matted mess.

This is the reality of living with cancer. Some days are great, some days are a struggle. But I’m grateful for each one. We keep pushing forward because that’s the only option.

 

We’re all going to experience it. Not just personally, but by losing people around us. I remember my first experience with death. It was my great uncle Joe and I was in high school. I just remember thinking “he was old and sick and old people die.” But being a part of the lung cancer community, I have experienced death on a whole new level. And sadly, with very young people too – a few were still teenagers.

The last few weeks have been quite emotional for me. My sister-in-law became critically ill overnight and is still in a very scary place. I lost was shocked to hear of my sweet, funny friend Jennifer passing away on Tuesday and the lung cancer community’s Dr. Don/Superman passed away Friday. I just heard of sweet Bobbi crossing over today. These were very big blows. I have another friend in hospice. I just can’t take it.

All of the deaths hit me hard. I’m very empathetic and I cry for each one and my first thought is always of their families that are left behind. How do they manage to live life without their loved ones? Of course they do eventually, but it is still unfathomable. But some deaths hit me harder than others on a much more personal level. I’m happy they are free of pain and I believe their bodies are whole again, but God do we miss them. I selfishly want them here with us.

These deaths are also like a slap in the face to those of us with terminal cancer. It’s a constant reminder of my own mortality. I’m not afraid to die. I most certainly do not want to, but I’m not afraid. I wish Nevada had a Death with Dignity law because I’ve seen too many at their end of life to know it is not always peaceful, nor it is always quick.

I’ve thought about this a lot. Once we know my end is close, I want it to be quick. Not so much for me, but for my family. I stared at my Gram for 24+ hours waiting for her last breath. That was hard enough, but I sat by Ali’s side for weeks praying for her body to be at peace. It’s torture. Families have endured so much already; they should not be tortured further at the end. No one wants to remember their loved ones like this.

I’ve cried so much the last 2 weeks. I feel like I’m always grieving someone. I’m pretty good at protecting myself and once I let it out, I can push it aside. This is becoming harder to do. I tell newly diagnosed patients all the time to find a therapist to help them find a way to cope with this new life. I have always been very good at coping with stress and chaos in my life. I meditate, exercise, talk with others, dance, laugh, write…. But lately it has become too much for me to bear. I’m afraid to go on Facebook some days because I know another death is coming soon. I’m going to look for a therapist this week.

As survivors we become very close, very fast. We bond over this disease – knowing it will likely cut our lives short. As advocates we fight not only for ourselves, but each other. We speak for those that no longer can. I was very involved for several years and spoke all over the country multiple times a year. I felt I had to do something to help change the face of lung cancer, to get more funding, to support those newly diagnosed, and to make people care about lung cancer. It kills more people than any other cancer (by FAR). Why aren’t more people infuriated by this?

After I started chemo again in May 2018, I realized I can’t do it all. And frankly, I needed a break. I couldn’t say “Yes” to everyone anymore. I’m much more picky where I spend my energy and time. But losing my friends helps motivate me and remember we need to keep fighting. I cried out loud the other day “How many more people in my life are going to die?” Sadly, I’ve lost dozens. We need to keep making noise until they listen. Use our voices. The needle is moving – VERY slowly, but it IS moving.

Today, hug your loved ones. Cuddle your furbabies. Don’t leave anything unsaid. Eat the cake and enjoy life. Please know I’m so grateful for each of you in my life. My life has been enriched because you are in it. As painful as it is being a part of this club no one wanted to join, I wouldn’t change it. To those mourning with me, I hope you find comfort and peace today.

I haven’t updated in a while. I got to talk to Genentech’s sales team of about 200 people on Tuesday. It was their annual National Field Meeting in Vegas. They were teams that work on Avastin (which I was on 8 years ago), Herceptin and Rituxan. I got to share my journey of living with lung cancer the last 8+ years and how I became an advocate.

I was most excited to share the story of the ROS1ders and what we/they have been able to accomplish the last few years. We created the first ever patient-driven research study and are helping to accelerate research for this very rare form of lung cancer. Read more here about the ROS1 Cancer Model Project.

Since 2017, tissue and fluid donations from ROS1+ patients have helped created 4 new cell lines and have shared them with 5 academic researcher centers to help determine drug resistance and find new treatment options that are desperately needed. If you’d like to contribute to our research you can donate to my page.

I was honored to speak to this dedicated group and was given some beautiful flowers and a standing ovation. I always feel a little weird on a stage with everyone staring at me.

***Warning – rant ahead***

Dealing with my new insurance has been a little trying. Not really the insurance companies fault exactly. New HMO insurance requires a new PCP and new referral to my oncologist. Got that Jan 9th and she ordered my brain MRI and CTs to save some time. First the orders were incorrect. Fixed that but it took 2 weeks to get me in for scans. I was always able to get into the other imaging center within a few days, but I guess January is busy. Finally scheduled for the 29th – yesterday. I get a call the day before that my insurance had not approved it yet so they were cancelling my appt – that took me 2 weeks to get! GRRR

I called my insurance company ready to give them hell. My chemo was already delayed a week and now this. And I’m supposed to have chemo again next week. Is it still working? We don’t know because I haven’t had scans yet! GRRRR It turns out my new PCP’s office did  not even submit authorization until Friday. WHAT?!

So I’ve made phone calls and told multiple people this needs to be expedited because they’re delaying my treatment once again. While writing this I got the call. WOOHOO! CTs scheduled tomorrow afternoon, see my onc on Monday and hopefully chemo on Wednesday. Brain MRI isn’t until Feb 13th.

Man! Navigating this system is not easy.

On top of all this fun stuff, my sister in law in still in the hospital with no definitive diagnosis. It is so scary. Thank you all for your support and love and please keep praying there is some improvement in her condition. This is heartbreaking for her family. We love you Jessie!

 

 

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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.

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