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?

 

 

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!

 

 

Gengen2ROS1ders logo AHR Set Rendering

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.

Lung Cancer Foundation of America

Raising awareness and funds for lung cancer research

Lung Cancer Foundation of America

Raising awareness and funds for lung cancer research

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