Amanda's Journey Through Life

On the final day of the ALK summit in Nashville this summer, I leaned into Chris and said, “I’m going to join the board of directors.”

The summit is organized by ALK Positive, Inc., the nonprofit and advocacy arm of the Facebook support group. They have a board of directors and committees that help run various aspects of the organization, such as ‘ALKtALK,’ which includes the support groups, including the program I lead, Young ALKies. There are also fundraising, finance, and the medical committee. The medical committee is headed by Dr. Ken Culver, whose primary job is to find new ways to advance medicine and research for ALK patients.

The summit this year, compared to last year, grew in size and professionalism. I was able to see where things are headed, and I decided I needed to be a part of it. So, I declared it to Chris right then. Once I got home, I began my campaign with the board members I’m friends with. I filled out the necessary paperwork and asked to be put up for a vote.

In September, I was voted in as the organization’s newest board member.

With this, I have also joined the fundraising committee and begun to create “Team ALK Positive.”

My goal for Team ALK Positive is to create a fundraising framework where ALK patients, along with their friends and family, can participate in fitness challenges. Many of us are stable and healthy enough to do this, and in fact, several of us have already taken on fitness challenges as fundraisers. I’m approaching this as a trial run, aiming to uncover any potential obstacles and challenges up front. I’m testing the process in hopes of working through the issues, refining the approach, and ultimately creating a model that can be easily replicated and passed on for others to use in the future. We are going to be doing the same run that my friends and family did with me in February 2023. I’m hoping to get several of the LA-area ALKies, along with their friends and family, involved too. We even have a corporate sponsor supplying our T-shirts: Bialack and Associates.

I’ve now been part of two board meetings. It feels incredibly inspiring to learn how things are run, where the donations go, and the advancements being made in cancer research.

Dr. Culver’s job, in simple terms, is to learn about everything going on in the lung cancer space. Then, when research or even researchers’ hypotheses sound promising, his job is to get ALK patients a seat at the table.

ALK accounts for 5% of all lung cancers, but we have the longest median life expectancy. We typically respond the best to our medications, but our representation is often lacking in studies. This is where donations, fundraising, and philanthropy come into play. ALK provides grants to biotech companies, researchers, and organizations that help bridge the gap between institutions and scientists. We say, “More Research = More Life,” which is an oversimplification of how truly important this is.

I am currently in the recruitment phase for our run, trying to get runners and walkers signed up. There is a 10K run, a 5K run or walk, a baby buggy (stroller push) for a 10K or a 5K, and a kids’ run. There’s an option for everyone.

If you are interested in joining the team or fundraising with us, please let me know. I have big goals for Team ALK Positive because More Research = More Life.

If you are interested in donating here is the link to the Stewart Family Page:

Every once in a while, the “Sunscreen Song” comes on my Spotify, or I think of a line from it, and I will listen to the song. I remember being diagnosed and hearing this line in my head: “The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4 PM on some idle Tuesday.”

Today, I think about this line: “Don’t waste your time on jealousy; sometimes you’re ahead, sometimes you’re behind. The race is long, and in the end, it’s only with yourself.”

I think about my own life and those I love. Everyone is going through something. Everyone is fighting their own battles. I walk through Target looking perfectly fine. Someone may judge my weight, not knowing I had twins two years ago, that my body changed in ways I can’t repair, and that I take a medicine that keeps me alive but also causes weight gain. Someone I work with might judge me, thinking I don’t work hard enough. Another mom could look at me having a nanny or that I’m often not home when Jack gets home from school and think I’m not a good mom.

I get it. I am guilty of this too. I believe people are really trying their best. The girl wearing an outfit I judge—she looked in the mirror this morning, and she tried her best. That overweight person might be down 30 pounds from where they started. I try my best to give grace to people. We are all doing our very best with the tools we have, even if their best doesn’t meet my standards.

For the people I care about in my life, seeing them on their journeys, facing their own struggles, and hitting their own goals is one of my greatest joys. Those who know me well, know the genuine pride I have in watching the people I care about overcome THEIR obstacles. It’s not about doing what I want them to do, in the way I think it should be done, though I do often think “I know best.” 

For some people their struggles are physical—sticking to the weight loss plan or the workout routine. Sometimes it’s easily identifiable, like getting straight A’s or a promotion at work. For others, it’s mental, like overcoming what feels like an impossible heartbreak, learning to trust others, or forgiving yourself for your own shortcomings. 

One of my struggles has been learning to accept living with terminal cancer.

Some days, I’ve got it, and some days are total shit shows. Perfection is not my goal, nor do I think it should be for anyone. If perfection is the goal, failure is often the only option. Perfection does not leave a lot of room for the grace of just trying your best. I saw on a friends instagram the other day “W is for the wins, and L is for the lessons”.

Thankfully, being open about my struggles is not one of my struggles. This has allowed me to talk openly to others and find the resources I need to help me get through my struggles. The flip side to that, is my struggle of sitting in discomfort of the unknown. Sometimes I have to do it, and it is hard, and I don’t do it perfectly.

I am truly proud of the people, who get up each day and try their best, despite how hard it might be and despite how perfect they may look on the outside.
Life can be hard, but it can also be amazing. Sometimes you’re ahead, and sometimes you’re behind, but the race is long (if you are lucky), and in the end, it is only with yourself.

Here’s the song:

I asked my husband Chris to be my next guest blogger, with the question of “What is the hardest thing you’ve ever gone through”. I’ve heard this story, but never like this. In fact, Chris used to say ‘he didn’t drink’, but not until recently did I hear him identify as an alcoholic, or talk about why he didn’t drink. This was the first time I’ve heard the story of ‘why’.

Thank you, Chris, for sharing your story, and for being so vulnerable. I too am very grateful and proud of you for that decision you made.

Here’s Chris’s Story:

The hardest thing I’ve ever had to do in my life was stop drinking. In 2017, I was living in El Paso and had just been discharged after a ten-year career in the Army. Convenience stores in Texas can sell beer and non-liquor drinks starting at 7 a.m., so every morning, I’d buy everything I thought I would need for the day. Not only did this eliminate the need to leave the house again, but I was usually still a mess from the night before, and I knew I should be off the road by the time parents were dropping off their kids at school.

I’d go to the store and load up on any drink with 8% or higher alcohol content. These were usually sweetened malt liquors sold in 16- or 24-ounce cans (think Four Loko, if you remember those). I’d load up an entire handbasket every morning. I seldom ate breakfast, so when I got home, I’d start drinking on an empty stomach. I’d drink fast, and every once in a while, I’d throw up immediately—only to drink another one shortly after. The next two or three hours were the only part of the day when I felt “OK” or “good,” because being drunk is only fun in the beginning. After that, the best I could feel was nothing, and the worst I could feel was despair.

Nowadays, when I tell people I don’t drink because I’m an alcoholic, I don’t know what they think that means. Some might think that I had embarrassed myself one too many times while drunk, or that I woke up in a strange place and decided to quit. But when I say I’m an alcoholic, I mean I spent a solid portion of my life trying to drink myself to death. I didn’t feel any connection to the world, and I was committing suicide one day at a time, because I didn’t have the courage to pull the trigger.

Alcohol, depression, and low self-esteem have always been my struggles, but the year leading up to my discharge from the Army was the hardest I’ve ever had. I went through a divorce, sent my son to live with my mom hundreds of miles away, and walked away from a ten-year career in the military. The Army wasn’t just something I say I loved when people thank me for my service—it really was the best job I ever had. I made great friends with some of the best people I’ve ever known. I taught young guys about artillery, and there was a whole platoon that respected and looked up to me because I was in the best shape of my life, had deployed to Iraq and Afghanistan, and really knew my stuff. When I left, I was alone in an empty house, stuck in Texas, dealing with the end of my divorce and verifying my VA disability claims.

I started drinking more. I drank during the day and throughout the night. When I woke up with a hangover, I’d drink it away. I sat in my air-conditioned house with the curtains drawn and the TV on. I’d laugh, cry, and play video games by myself. I had gone from being somebody to being nobody in the blink of an eye. And the more I tried to fill that void with alcohol, the deeper I sank into depression. Every day got worse. Occasionally, I would try to take a day off, but I’d shake and sweat so badly I thought I was going to die. Worse, as soon as I even thought about drinking, I’d start feeling better. My brain had reprogrammed itself to make me feel good the moment I told myself I’d have just one more drink to calm my nerves. I’d go to the store, fill up my handbasket like I always did, and promise myself this would be the last time. One more time. It was always one more time.

One night, I was talking to my mom on the phone. She was telling me about how Jack, my son, had spent the day with my nephew Gabriel, and they had such a good time. I remember asking her, “Who’s Gabriel?” She paused and said, “Your nephew, Gabriel.” I tried to pretend like I’d misheard her, but I couldn’t remember my own nephew’s name. As we were talking, I started wondering how long it would be before I started forgetting about Jack too. I remembered the day I sent him to live with his grandma because my ex-wife and I were in such a bad place. I remember crying in the street as I watched him ride away. When I got off the phone, I started crying again because I didn’t think I’d ever see him again. That was my rock bottom. Knowing—not just thinking, but knowing—that if I kept drinking the way I was, I’d die alone in my house in Texas and never see my son again. It was the thought of not seeing Jack ever again that saved my life. Jack saved my life.

Going through withdrawals was hell, but I knew I had to get through it. I didn’t sleep for days because I had been passing out drunk for months. My body had forgotten how to fall asleep on its own. I shook terribly, I would dry heave randomly, and my stomach would throw water back up, trying to force me to drink alcohol just one more time. It didn’t just stop one day; it took weeks. I had to train myself to do normal things again. The most important thing I did was to start planning out each day and never giving myself time to sit and think. One of the best pieces of advice I ever received was, “You can’t steer a parked car,” and that’s how I started living. I didn’t always know what I was going to end up doing, but I knew that if I gave myself too much free time, I’d start thinking up ways to drink again. The last time I had a drink was January 5, 2018.

Today, I have no desire to drink. It doesn’t bother me to see people drink, and I never have any physical or mental urge to take a sip. But I do stay busy. I wake up at 5 a.m. and exhaust myself until 9 p.m., making sure I don’t waste any more days. Jack really did save my life that day, and that means I have to be the best man I can from now on to honor him. It’s because of Jack that I lived long enough to meet Amanda, and now we have James and Benny. None of them deserve to have the man I described earlier as their father. They deserve a man who would gladly lay down his life to defend them. That’s who I try to be. I’m far from perfect; I’m sure I’m absolutely unbearable to some. But I’ve learned to forgive myself for my past by making the most of the present. In the future, when I look back and regret things I’ve done and said, I know I’ll forgive myself because I’m really trying to be a better man. I deserve to be the best version of myself, and so does everyone who lives under the same roof as me.

I had scans on July 18. Chris and I were leaving for the annual ALK Positive summit, which was in Nashville this year, and I had a planned oncologist appointment for the following Tuesday. For the first time, I wasn’t really anxious. It was either going to be good, in which case I bought some more time to make decisions about my surgery, or it would be bad, in which case I’d need to speed up the surgery, get a biopsy, and possibly switch to my next line of treatment.

The results were supposed to be manually released, and I wasn’t supposed to get them until my oncology appointment. They were released early, and I (obviously) couldn’t help myself. They were good—better than I’d hoped. The spot in my lung, where my primary tumor is/was that had been lighting up, resolved itself. Everything is stable. We celebrated at Jersey Mike’s and headed off to Nashville.

Nashville was incredible. It felt soul-filling. I love all things that involve being around other ALKies. It feels like the hardest struggle of my life is genuinely understood. I created the 2024 memorial video. I did it because I wanted to honor Ernest and desensitize myself to watching it. The 2023 video hurt too much. I wanted to do this one so I could emotionally prepare for the level of sadness it would bring.

The LA ALKies are a great bunch, and we all kinda stuck together. Chris and I spent all weekend with Matt and Karen. They are both doctors (Karen is a surgeon, Matt is a radiologist and the ALKie). Matt translates all my PET scans for me, and both of them have been there for me when I’m losing it over what I should be doing. We are about a month apart on diagnosis. They also have two young boys. It was at their recommendation that I went to MD Anderson, canceled the surgery I was going to have at Kaiser, and met with another surgeon at UCLA. We had a lot of fun with them and everyone in Nashville.

My surgery is currently on hold. I’m deciding on the next best steps right now. With the spot resolving itself, I feel less urgency. I’ve met with some very experienced surgeons. My oncologist has always been against the surgery, and she reiterated that to me. I was able to hear her, versus my usual tendency to ignore or discredit something I don’t fully agree with. This was big for me. I may move forward with biopsies to see if there is active cancer in my lung and lymph nodes. That seems like a good first step to gather information before deciding if I’m going to remove my lobe.

Lastly, I wanted to share the article from the ALK Positive newsletter that was written about me. I was asked to be the spotlight patient for July.

Here it is: ALK postive July 2024 Patient Spotlight

Before I start my mom’s post, I want to give the backstory to the guest blogging.

I’ve asked a lot of questions of people in my life and people that I have met over the last year and a half. I have heard amazing stories of resilience. People comment to me about how strong, brave, or resilient (pick the adjective) I am, since I starting this journey of living with terminal cancer.

The truth is, we all go through stuff. Everyone has a struggle or a hardship. Life is hard. So I started asking people, “What is the hardest thing you’ve gone through, and how did you or do you get through it”?

When I asked my mom to write her story about the hardest thing she ever went through, I thought it would be her infertility struggle. I’ve spent my life knowing how hard that was for her. So many people getting pregnant easily around her, skipping baby showers because it was too hard, gaining weight from stress eating, and then being asked when she was expecting. But then she told me that’s no longer the hardest thing she has been through.

It must have been a mental block for me, but she has a child with a terminal illness. As a parent now myself, I would take this illness 1000 times over in place of my children. As I am positive she would too. I remember being in my first CT scan and how uncomfortable it was and thinking, “Thank God this is me and not them.” I cannot imagine this experience from my mom’s perspective, and I pray I never will.

Here is my mom’s story of resilience for the hardest struggle of her life:

Amanda asked me to write for her blog. Her description of what she wanted me to address was the hardest experience of my life and how I dealt with it. She said she wanted me to talk about something very difficult that I had managed to survive, overcome, and move past. Imagine both of our surprise,
when it turned out that we each had a different experience in mind. Amanda expected that I would want to write about dealing with infertility. Of course, this makes perfect sense, as, until October 2022, that was absolutely the most difficult experience of my life. Of course, on October 27, 2022, we learned
that Amanda had been diagnosed with Stage 4, Metastatic Lung Cancer. Since that day, having my one and only child living with Cancer is for me the most difficult experience of my life.

As this writing is also Amanda’s origin story, I will tell you a little bit about my experience with infertility. Eddie and I got married in 1977 fully expecting to quickly conceive a child. When that did not happen,
we both underwent medical testing, and it was determined that I would have a hard time getting pregnant. There was nothing drastically wrong with either of us, but low hormones on both sides meant extreme difficulty in conceiving. It was a great disappointment to us. Adoption was our best option if we were to become parents. With individual counseling and couples counseling, I managed to mourn the loss of the child that would be genetically derived from Eddie and me. I came to understand that my
deepest desire was to be a mom, however that came to be. We investigated adoption and learned that the best fit for us was Vista Del Mar, the Jewish adoption agency here in Los Angeles. We were assigned a social worker. She investigated us thoroughly. About three years after we started the journey with Vista Del Mar, we were matched with Jeannie. We met and got to know each other over a couple of visits. Jeannie decided that Eddie and I were whom she wanted to place her baby with. Amanda was
born on December 17, 1985. We picked her up from the hospital on December 19, 1985, and began our lives as a family. This description, of course, condenses a long period of time in our early married years.

And now on to nineteen months ago:
It was so exciting anticipating the birth of James Matthew and Benjamin David. We were at the hospital at the time they were born, October 17, 2022. Two perfect and gorgeous baby boys! A couple of hours after their arrival, we were able to spend a few minutes holding each of them and expressing our joy. Two days later, Amanda and the boys went home. Over the weekend, Chris took Amanda back to the hospital as she had a very bad cough. The doctors drained the fluid from her lungs, which helped relieve the pressure and I believe that she felt better. The boys were born on a Monday and the following Monday we held a Bris for them at our house. It was a grand celebration. So many people we love were there to share the joy we all felt. I truly felt as if I were on top of the tallest building of happiness. I couldn’t imagine ever feeling happier.
The very next afternoon Amanda called. She told us she had gotten a call from the doctor, and he told her that abnormal cells had been discovered in the fluid that had been drained from her lungs. The day after, she shared the news with us that the diagnosis was Lung Cancer. Suddenly, my world collapsed. The next few weeks were a whirlwind of information. Amanda had a PET Scan. We met with the Oncologist to get the results of the scan. The utmost hope was that genetic testing of the fluid from her lungs would confirm what the Oncologist suspected that Amanda had a gene-mutation form of Cancer. I believe it was about 10 days later when her specific diagnosis of ALK-Positive was confirmed. She immediately began treatment with a targeted medication that has been very successful in treating her disease. I can say that those initial few weeks and then months were the hardest time of my life.

At first, I felt filled with rage at the unfairness of this disease attacking Amanda at the very moment she should have been only concerned with changing diapers and feeding babies and getting some sleep. Every day when I awoke, I felt that anger about her Cancer. I also felt rage at the fact that I, a first-time grandma, had to also worry about the survival of my only child. I just wanted to revel in the pleasure of holding and loving my grandsons. I wanted to bond with them. I didn’t want to think about the Cancer.

Of course, there was also an underlay of fear. Was it possible that I would outlive my daughter? Could I even survive such a situation? I do know people who have lost a child. I know the pain is beyond description. Sometimes I would wake in the night with fear gripping my chest. Going back to sleep was out of the question. It was a time of anger alternating with fear. And then time passes.

Once the initial shock wore off, I felt that I was left with a choice: do I dwell on the unfairness and the uncertainty of her Cancer? Or do I live each day and make it count. Do I worry about her health? You bet I do. But I don’t spend each day thinking about what the future may bring. I am driven to be as helpful to her as I can be. I love the time spent caring for my grandsons. I love the time spent laughing with Amanda. We joke about using the “Cancer Card” to get a little extra benefit out of trying situations.

As time has passed it has become harder to hold on to the anger. I’m not sure what I got out of it at the beginning, but after months of exhaustion from feeling angry all the time, I no longer wanted to focus on the unfairness of the Cancer. It became just too tiring, with no benefit. So, I gradually began to forget to be angry or scared. My biggest inspiration during that transition was watching Amanda. I thought to myself: “if Amanda, who is the person with the Cancer, can smile and laugh and enjoy her babies and her husband, and her life, surely, I can too”. I have two very special grandsons. I cannot imagine enjoying anything more than spending time with them.
I don’t know what the future will bring. My goal now is to live in the present. I want to drink in the experience of being a grandma. I want to revel in each accomplishment that my grandsons attain. I live for the smile on each of their faces when they see me. My heart grows when one of them reaches out to me to hold him.

I stopped writing this a few days ago. I couldn’t figure out how to end this story. When I awoke this morning, I realized that I can’t figure out how to end this writing because this story is not about how it ends. It is about how I have learned to live each day, feeling present and focusing on what the day will bring. This is especially true if today is a day that I get to see Bennie and Jamie (and Amanda too!). I will not focus on what tomorrow will bring. I will live fully today. Then I will live fully tomorrow. I know that every day will not be easy, but I choose to find something joyous to focus on today.

Not to worry, I’m still here. Life has been busy, and that means my pet projects such as my blog get sidelined while I handle the busy life of a mom, wife, full-time realtor, and ALKie.

So much has been going on. Chris and I have sold 2 of our 3 properties and completely changed our lives financially. My friends laugh because I have completely drunk the Kool-Aid that is Dave Ramsey. We have learned how to budget, paid off 90% of our debt, and fully funded our emergency fund. I am going to make a whole post about this soon because it really is one of the things I am most proud of right now.

The babes are almost 19 months. Time is a thief, they say, and you don’t realize it until you look at what a year and a half looks like in your children. Jack is doing incredible. He has joined his school’s track and field team and had his first meet last weekend. He is running a mile in less than half the time it takes me. He is getting straight A’s in school and made the honor roll. He is in band and opts to take the early 0 period music class on top of everything else. He is a star player on his elite soccer team. The kid is amazing, and to be his parents, we are filled with pride. Let me just say, this is not what my 7th-grade year looked like. There wasn’t a lot of pride I was giving to my parents.

Last month I had my quarterly PET scan, it was mostly the same with a slight uptick in my lower left lobe, where my original primary tumor was/is. I have been campaigning for a lower left lobe removal/resection for about a year. Dr. Andan suggested I talk to some of the people in my FB group who have had it done. I have done my research. Here are the links to the 2 papers I cited when I made my case:

https://www.nature.com/articles/s41598-022-22957-9

https://cardiothoracicsurgery.biomedcentral.com/articles/10.1186/s13019-023-02310-5

With this uptick, I decided to push harder. Dr. Andan agreed and presented me to the tumor board. Last week they discussed my case for 30 minutes, reviewing every scan I’ve had since diagnosis from every different angle. They decided to give me a referral to the theoretical surgeon. I met with him today at 10 am. We will decide together if this surgery is best for me. The research shows that the overall survival of patients who have this surgery AND the TKI (the type of pills I take) vs just taking the TKI is statistically significant. If I am able to get the surgery with minimal risk, I think it will give me the best possible chance at a long life. This surgery is not currently the standard course of care, but I know several people in my FB group who have gotten it. I think in the coming years, this will be the standard course of care for stage 4 patients. Currently, the people I know living the longest with a stage 4 diagnosis are those that have had a version of this surgery. I will keep everyone posted about the outcome of our meeting.

I am looking forward to more regular posts in the coming weeks!

Last Friday was mine and Chris’s first wedding anniversary. There have been several one-year anniversaries of events in the last six months. This one, in particular, feels like a true accomplishment versus the passage of time. Chris and I met in June 2021, and we got pregnant, surprisingly (accidentally), with twins after dating for seven months. We moved in together when I was five months pregnant. We blended a family with me moving in with my mother-in-law, Maria, and my stepson, Jack. We got engaged a month after I moved in. I had the twins and was diagnosed with cancer, all before we knew each other for 18 months.

I think we chose to get married so quickly, in large part because of my diagnosis. We picked the date to coordinate getting my PET scan and needing to not be around the twins and going on a honeymoon. We had a really beautiful and fun wedding. Our friend Joe married us on the beach in Malibu. We had our reception in Pickles’ backyard. We had my favorite taco truck for dinner and called for the attire to be sweats and comfy clothes. Chris and I wore sweat suits that said “Bride/Mrs. Stewart” and “Groom/Mr. Stewart.”

As anyone who is married knows, the beauty or fun of the wedding and the success of the marriage are not related.

We have spent our newlywed year learning how to live together, be parents of twins together, navigate a blended family together, and live with me having cancer together. There have been many times when we’ve thought the easier option would be to throw in the towel. I know no one would be surprised. Look at what we’ve had to endure together.

The traditional gift for the first anniversary is paper. The explanation is that paper is fragile but if treated well can last a lifetime. I told Chris that if we are paper, we are currently wrapped in a sheet protector, on a small raft, in the middle of the ocean during a storm.

What I can say, and what I am grateful for, is that even in our worst days, Chris has made the choice to continue to try. He has shown up and problem-solved. He has never once told me tough shit or used the excuse of “this just is who I am.” He has done work and been open to new ways of doing things or trying things to make our marriage and family more successful. He is open to hearing my criticism without getting defensive. He constantly prioritizes time with me, time with Jack, and time with the twins. I have learned so much about him but also about myself in this first year of marriage.

We together have learned how to balance my love of having fun with Chris’s belief in sacrifice for long-term gain. I think we’ve learned a peace that comes from letting go of how we thought things should look or be with the realities of what works for us.

My friend sent me these questions that she and her husband review together on their anniversaries and suggested it to our group of friends.

1. How have we changed this year?
2. What obstacles have we gone through individually, and how has our relationship weathered them?
3. What hardships have happened in our relationship? Did we resolve them? Or are there things we still need to work through?
4. What turns me on about you after all these years together?
5. What do we want to accomplish individually this next year? And as a couple?
6. What three things do I appreciate about you?

Chris and I discussed these questions on our anniversary trip together. My favorite part of our anniversary this year was how much we talked. It was so nice to have time with each other, have no plans, and just hang out and talk about our lives, plans, and thoughts. We don’t do that often.

Chris is so much of the man I manifested in my mind of who I wanted to be with. He is physically strong and makes me feel that I, and our boys, are protected. He is a dedicated hard worker. I know his work ethic will translate over to his career once he’s out of school. But getting straight A’s through undergrad and all A’s and one B in grad school is something to admire.

Chris has given me a life I’ve dreamed of, to be a mom and a wife. He has also encouraged me to not completely lose my identity in these new roles and has supported me working, spending time with my friends, and being a cancer advocate.

We are far from perfect. There will continue to be days when quitting seems easier. Marriage is hard. As the phrase painted on the wall of the marriage license room in the Beverly Hills courthouse says, “a perfect marriage is just two imperfect people who refuse to give up on each other.” And that is what Chris and I have.

Next week, marks the 7th anniversary of Heather Olsen’s passing. Heather is one of those people who entered my life and profoundly altered it in ways I could have never imagined.

I remember first hearing about her at work. I recall my manager, Neil, mentioning something like, “Did I hear about Travis’s wife? She just got diagnosed with some crazy terminal lung cancer. She’s in her mid-30s.”

It was a tragic tale, but of a person I didn’t know. In fact, I didn’t know Travis well either. He was a title rep who worked with some other agents in my office.

I recall learning about her treatment. I think I followed Travis on Facebook, and Heather would tag him in her updates. The treatment was brutal. They had a young son, who I think was around 3 or 4 when she was diagnosed. It was a heartbreaking story. She was beautiful. Yet, it didn’t strike me as an extraordinary tale at the time.

She wrote posts about overcoming the odds and surviving. Everyone in her life rallied around her. What else could you say to a young, healthy mom in her 30s?

Then, the tone of her posts began to shift. She came to the realization that no amount of prayers or hope would save her. She was going to die. She didn’t “accept it”, but she understood it wasn’t a choice she had anymore. Her choice was how she wanted to spend her remaining days. She created a bucket list and began experiencing things she could, even with her declining health. She wrote birthday cards to her son until his 30th birthday. She met Adam Levine and attended a taping of The Voice. She spent time at a beach house, sleeping with the doors open and listening to the waves. She had a reading with a famous medium.

She shared her message with anyone who would listen: to live their best lives, not to waste time because it’s fleeting, to be authentic and genuine because those moments are real.

I started messaging her on Facebook. At that time, I had been suffering from debilitating panic attacks with agoraphobia since I was 16. I was 30 at this time. Her message was incredibly powerful. I told myself I was going to live to be 90. I couldn’t let these panic attacks control my life for the next 60 years as they had for the last 15. I wanted to do things. I was living a mere shadow of the life I truly desired.

Jeannie, my birth mother, and I booked an overnight trip to Catalina Island because I needed to start overcoming my panic attacks. I despised boats because I had no control and was prone to motion sickness. So, we took a boat over. I had always wanted to go zip-lining, but I was terrified of relinquishing that much control. So, I booked a zip-lining excursion. I had never been in a helicopter, and it was daunting to me. So, I booked us a helicopter ride off the island. I did all of those things despite my overwhelming fear. I told Heather about the trip and explained it was because of her.

Her story provided me with perspective on mortality, prompting me to take out a life insurance policy. I had no real reason to do so. I didn’t have children, a spouse, or significant financial responsibilities. However, I was young and healthy, so I obtained a great term policy. My rationale was, “If something awful happens, my parents will have some extra money, and in the best-case scenario, I’ve only wasted $50 a month for 30 years.”

I cannot overstate the impact she had on my life. Between turning 30 and becoming pregnant with twins, I traveled to Guadalajara, Mexico, to see where my birth father was born. I embarked on several trips with Hadassah, visiting Massachusetts, Louisiana, Vermont, and Pennsylvania. I went to New York City and stood in Times Square for New Year’s Eve. I visited Club 33 at Disneyland. I journeyed to Israel by myself and stayed at a beachfront hotel where I slept with the patio door open, listening to the waves. I flew to Arizona for the day to visit my friend Heather. I visited multiple MLB stadiums and attended a game at Fenway Park. I flew to San Francisco to watch a Dodgers vs. Giants game with my cousin, Shasta. I traveled to Cabo and Cancun, went zip-lining, and cave tubing in Belize. I got a season pass to Disneyland and season tickets to the Dodgers. I ran half marathons, lived on my own for the first time, and finally got to live in a Jewish community, which I adored.

I trained to test for the Los Angeles Fire Department, a lifelong dream that I was never able to fulfill. After three months of two-hour workouts six days a week and starting the UCLA EMT course, I could finally say, “I tried it, and it’s okay to not pursue this. It’s not part of this lifetime.”

I created a bucket list and began living the life I wanted to lead.

By 2021, I had accomplished so much. The next phase of my life involved finding my person and starting the family I had always dreamed of having. In June 2021, I met Chris.

I still have my “Live Like Heather” t-shirt. I wore it on the beach in Tel Aviv and during the Disney half marathon I’ve completed. I wore it while doing firefighter training, and I wear it today during workouts.

In my last conversation with Heather on February 12, 2017, just eight days before she passed away, she said, “I’ve loved watching your career bloom and your special love in doing so much and really living in these moments. If ONE person is living a more raw and true life because of me, then I’ve contributed to a more organic way of realism, which is to love, live, and not wait. People ask what else I want to do, and I keep saying, I’m doing it ☺️ I wish I had two things that no one has control over 1) time and 2) good health.”

Heather lived with her diagnosis for 19 months. She was 36 when she passed away, leaving behind her 5-year-old son, Grant.

Today, Grant is 12. Her husband, Travis, was one of the first people I contacted after my diagnosis, and he remains someone I frequently lean on for understanding. Her Facebook page has been converted into a memorial page, frozen in time with her main profile picture of her and Travis in their 30s, celebrating something. The messages she shared with the world are preserved there, buried beneath seven years of posts from her friends and family, filled with pictures, messages, and memories.

Heather, your memory is a blessing.

In talking about this current chapter in my life, often, people will say, “How do you do it?” The answer is easy; I have no other choice. I have a full life, and life is for the living, there is no time for me to waste being miserable. So many people have those stories. So many of us have gone through or are going through SUCH. HARD. THINGS. Some people are private. For me, as a very open person, I find that when I talk about what I am going through or hear about what someone else is going through, from an authentic perspective, it allows me to know that person better. It allows our conversations to be deeper and more meaningful. I’ve tried to remember the quote I once heard, “Be kind to everyone, for they are going through a battle you know nothing about.”

This story from our first guest blogger is from my birth mother, Jeannie. It is her story of her hardest time. It is also my origin story, and I can’t think of a better first guest blogger. Thank you, Jeannie, for sharing your story.

My luck isn’t the kind that wins raffles or hits on a roulette wheel. I’m lucky in life, in the people I attract and the results of my decisions. This is my story of resilience and how incredibly lucky I am to have my personal tragedy become a happy ending for so many people.

I remember the day. I remember telling my boyfriend that we didn’t need to stop because we didn’t have a condom. I remember how absurdly good it felt. I remember afterwards just feeling wonderful. I had taken chances before and not gotten pregnant – I was sure I was fine.

A month later, my period was late and I wasn’t so sure anymore. There were lots of negative over-the-counter pregnancy tests but no period. Finally, there was a blood test and a phone call. My roommate was a phlebotomist working in a lab and she called me, ”Jeanne, you’re pregnant” and the bottom dropped out of my world.

Was I naive, arrogant, willfully blind to the consequences of my actions? Absolutely. Does my heart still ache for the 19 yr old me and the moment when reality crashed into my belief that “things” happened to other people? Yes.

Over the next few months, I realized that what I wanted most for my baby was the best opportunity for a good life. It was a struggle to come to terms with the knowledge that I wasn’t the one who could provide that.

Contacting Vista del Mar, the adoption agency, didn’t require a large amount of initiative on my part. I had moved back in with my parents and my dad was a social worker for a Catholic adoption agency in the same building as Vista. I met with Harvey, my social worker, and he told me he had the perfect parents for my baby: Eddie and Maggie, a wonderful, stable couple. Eddie was a lawyer and Maggie was a bookkeeper. They were amazing and perfect. I went home and cried when I told the baby in my belly all about them.

Diana Shaya Furie was born December 17, 1985. She was beautiful and perfect. I had to ask to hold her because the nurses knew she was going to be adopted. I remember holding her and feeling my heart break into a million pieces. She moved in my arms exactly as she had moved in my belly. I would know her anywhere. I was her mom for 2 days then I went home without her.

The pain of relinquishing my baby was beyond anything I could have anticipated or expected. Up to that point in my life, I still believed in a god. As I lay in my bed, physically healing from giving birth, emotionally broken from relinquishing my baby, I prayed to God to ease my pain. I knew I had done what was best for my daughter but the pain of separation was all encompassing. The sorrow dragged me into dark and horrible places. I cried and despaired. I lost my belief in God.

Then the power of my luck emerged. In my darkness, came a light. Eddie and Maggie had written me a letter. Her name is Amanda Halley. She is beautiful and perfect. Would I be open to possibly opening the adoption? They felt it would be best for Amanda to have me in her life. They told me they believed that Amanda didn’t have a limit on the number of people who loved her.

I met Amanda when she was around 6 months old. My darkness lightened. My every reason for my sacrifice was justified. Amanda had a mom and a dad. She had a dog and a house.

The story of my resilience had begun. It wasn’t through anything I did for myself but because of my great good luck in finding Eddie and Maggie.

I was able to come back from the depths of despair because of the kindness and compassion of others. I try to be that light now, to reach out my hand to people that come into my life, to help others with the resilience that was gifted to me.

Last week, on New Year’s Day, I came out as living with stage 4 lung cancer. It felt as though not discussing it publicly was, in a small way, causing me to live two lives. I wasn’t accepting tags on photos or posting anywhere publicly about having cancer. Might I add, it’s very hard to be a public ALK-positive lung cancer advocate when I’m not publicly talking about it.

Initially, when I was first diagnosed, it was too overwhelming to have the same conversation over and over again. I was treated differently. People did not know how to act around me. I also feared it for business. I was working and didn’t want clients or potential clients to fear working with me because I had newborns and cancer.

As time went by, I would gradually tell new people, and it continued to get easier. I was able to talk about the treatment I was on and the results of my most recent scans. People stopped treating me like I was already on hospice. And the clients I told continued to work with me. They cared about my well-being but also didn’t hold back. The last thing I needed was a client monitoring their emotions during a transaction for my sake.

I made my announcement in the form of a reel on my Instagram and Facebook pages. I heard from so many people, including a cousin whom I hadn’t talked to in a while, my ex-boyfriend from when I was 15, and past clients who I keep in touch with over social media.

I got a few repeat questions and feel like now would be a good time to answer those questions, provide a more detailed backstory, give an update about what my current status is, and what living with stage 4 lung cancer means right now. 

So here it is:

Prior to becoming pregnant, I had some random breathing issues. In November 2021, I had an episode overnight where I woke up unable to catch my breath, which lasted for 30 seconds, and in December 2021, while at Disney World, I was wheezing. My primary care doctor ordered me a chest X-ray and a breathing test, and it came back normal. She said (and I’m quoting this), “we can go into further diagnostics, but you’re 36, you’re in good health, and there’s probably nothing wrong with you.”

When I was pregnant, I was miserable, as anyone who was around me could attest too. But I also developed a cough. Every OB I saw at Kaiser wrote off my complaints as me being pregnant with twins. Including the day I had an iron infusion and was in crippling pain. I checked into labor and delivery (because that is where you go when you’re pregnant vs. the ER) and was admitted to the hospital. But I was discharged because despite the extreme pain, I was not in labor. They only gave me Tylenol. The pain was in my abdomen, on the left side, the same place that a month or so later they would find my primary tumor, with a sizable pleural effusion which caused the lower left lobe of my lung to collapse. I believe that pain was the influx of blood from the infusion to a collapsed lung. So they billed me for admitting me, and sent me home after 6 hours.

Five days after the twins were born, I went to the ER for the cough that had never gone away and the difficulty I was having breathing. The cough was now a bigger problem because I had a C-section incision. The chest X-ray showed a pleural effusion. They drained a liter of fluid from my lung and sent it to pathology. On October 27, with 10-day-old twins, I got the call that it was cancer. The pleural effusion was already considered metastasis. The pleural effusion was on the left side, and my right lymph node on my collarbone was swollen enough to feel. Dr. Dai, my new pulmonologist that had treated me in the ER confirmed, over the phone, that even before the PET scan he was ordering for me, that this is going to be stage four lung cancer.

My initial PET scan, which took place 2 weeks after my ER visit, showed cancer in multiple lymph nodes throughout my chest and neck, the primary tumor on my lower left lobe, more pleural effusion, and some additional spread.

We met with my new oncologist, Dr. Adnan, the following Monday, and she had already sent my pleural effusion out for DNA sequencing. She was confident that I would have a genetic mutation and that I would be able to start targeted treatment. She explained to me that this is how cancer is treated today. I likely wouldn’t go through chemo and radiation now. Once they knew my mutation, I’d take medication, which is typically tolerated well. The medicine would go after the cancer cells wherever they were. She was the first good news and the first feeling of hope after a little over 2 weeks of hell.

My genetic mutation is called ALK, and I am considered ALK positive. My diagnosis is stage 4 metastatic adenocarcinoma. It is a non-small cell lung cancer. Non-small cell means smoking had NOTHING to do with it. One of my goals is going to be to raise awareness that this can happen to ANYONE with lungs, and I want to help destigmatize lung cancer as something that is self-inflicted by smokers. Many people in my Facebook ALK Positive group are ‘never smokers.’ I did smoke on and off for 10 years, and quit in 2012, but it had no impact on me getting this cancer. To be diagnosed with this before 40 is a 0.1% chance. ALK positive is something like 5-7% of adenocarcinomas. My first-line treatment is called Alectinib. It is a TKI (Tyrosine Kinase Inhibitors), which is a targeted treatment. It is a 2nd generation ALK TKI. And to give a frame of reference for how long this has existed, it got FDA approval in 2015. The 3rd generation ALK TKI is already FDA approved, and what we expect to be the 4th generation is currently in clinical trials.

Prior to TKIs, the prognosis for stage 4 lung cancer was 18 months. The only treatment was chemo, radiation, and surgery. Quality of life was poor. Today the prognosis is 7 years and most people have a really good quality of life on TKI’s. The numbers that work into this prognosis include the unlucky people, like my friend Ernest, who have “bad ALK.” Their cancer mutates quickly, and the patient goes through each of the treatments very quickly. This median timeline also doesn’t account for how the newer TKIs have changed this number. 10 years ago this medicine didn’t exist. I know people in my ALK positive support group with 7, 10, and even 16 and 17 years. And that, obviously, is the goal. The true goal is for science to stay one step ahead of my disease.

The medicine I am on is not a cure. At this time, I’ve had a complete response. Meaning, my most recent PET scan shows no cancer in my body. Lung cancer’s deadliness (more people die from lung cancer than any other type of cancer) is because of how systemic it is. It gets in the blood and circulates. So even though I have nothing showing on the PET scan, it could (we don’t know for sure) be circulating in my blood. One day, my cancer is expected to mutate, and that is when we decide if we will weed the garden. Meaning, do radiation to the new spot of cancer or change my TKI. My hope is to get as much time as possible off each line of treatment until science is able to cure stage 4 lung cancer or turn it into a manageable chronic condition.

This is where things are today from the medical perspective. I am living with a terminal illness. I am so grateful that most days I am able to forget I have this and am able to enjoy time with my kids, my husband, and my friends. That I’m able to go on adventures and that I am able to work. The mental struggle is the hard part, which I’ve talked about quite a bit on this blog. It’s been a huge shift in my thinking that I’ve lived more life than I will get to live. Science may advance so much that I get to live another 30-40 years, but when science is saying 7 years it sounds delusional to make assumptions like that. My mind and planning for the future shut off past me turning 50. That’s my goal age; I want to see the boys have their bar mitzvahs and I want to celebrate turning 50. Hopefully, I make it there and what science does in the next 12 years is beyond my current imagination.

Thank you to all my new followers for joining me on this journey of my life. Please post any questions about any of this in the comments section so others can read the questions and my responses.