Happy 12th Birthday, my incredible bonus son. Everyone who knows you is impressed by you, this you already know. What I’ve thought about lately is how lucky our family and the twins are to have you as their older brother. The solace it gives me to know that if one day I am not around, and your grandma isn’t able to help the way she was with you, that you are here. Your dad will not be alone to raise the boys because they have an older brother. Whenever I get scared of not being here, I remember they have each other and they have you.
I know you did not ask for a stepmom and little brothers. You have handled this adjustment with such grace and dignity. It is not lost on me how hard this must have been for you. I appreciate you welcoming me and making space for me in your home and heart.
Jack, I loved you from before I met you. Your dad told me about you, and I started thinking about how fun our life would be together. The adventures we’d go on, and the places we would see. I wondered if you were actually as good of a kid as your dad described. I thought about how fun it would be to celebrate our birthdays together every year.
You exceeded expectations. You are book smart and wise. You’re a math whiz and a soccer star. You are kind. Genuinely kind and loving. You see the good and you are happy. You believe in yourself. I hope that never fades. It is a rare gift. Never doubt yourself and what you can accomplish. I hope your teenage years aren’t so hard for you.
I hope you always know that you HAVE and DO make your dad so proud, and I hope you always know how much I love and adore you and how honored I am to be your stepmom.
My scan was supposed to take place the Friday after Thanksgiving. Chris and I were supposed to go to San Diego for the night, but we made plans and God laughed. Friday morning, the radiology department called, and the PET scan machine broke down. James also wasn’t feeling well, and then I got a text message from my friend Ernest’s sister that he had passed away. That Friday was a hard day.
Ernest was a part of my LA ALKies group. He was the same age as me and lived a cool life. He was an officer in an Army infantry unit, and then he started a tech company that incorporated concerts in virtual reality. He lived in West Hollywood with his sister, Iris, who was his caregiver.
After we met for the first time this summer, we made plans to go to dinner. Of course, dinner on a weeknight with young kids is hard, so I unfortunately kept putting it off. We touched base, always checking in on each other. He was admitted to the hospital a few months ago, and I went to visit and bring him and Iris lasagna. Ernest had what we call ‘bad ALK.’ It’s when your cancer mutates quickly, and you run through all the meds. During the summer, he was on oxygen, having just finished a round of chemo and found out he had a MET amplification. He was having a tough time with lung cancer. Another healthy, active non-smoker.
He passed away about 18 months after his diagnosis, on October 17, the twins’ birthday, in Houston at MD Anderson, the hospital his primary oncologist was in. He is my first friend to die. People in the Facebook group have died, but Ernest was someone I counted as a real friend. I had no idea he was dying, but I don’t think he did either. Ernest thought his cancer was a setback, and his complications were just minor roadblocks. He had floor seats at a Taylor Swift concert in September. He lived and loved life.
Please read about him and his incredible life. My only sadness is that I didn’t get more time together. I know we would have been such good friends. May his memory be a blessing and bring comfort to those who loved and cared for him.
My PET scan was a week ago, and I got the results back last Saturday. Stable, as before. I have slight inflammation in the lower left lung, which is a part of the small amount of lung damage I have. I am lucky because it’s small. It always feels better when I breathe hard and work out. It doesn’t hurt; it’s just a tightness in the area. I’ll take it. It really doesn’t bother me. I am switching my scans to every 4 months now, per the suggestion of my oncologist, Dr. Andan. So I continue on…
The LA ALKies, this past summer. Ernest is the man in the hat.
In the last month and a half, there has been a pervasive sense of collective sadness among Jews worldwide. October 7 marked Simcha Torah, which signifies the culmination of the Jewish fall holidays. In 2017, on Rosh Hashana, I made the decision to confront my fears and embark on a journey halfway around the world to celebrate Sukkot in Israel.
A few years ago, I was asked to share a story about a life-changing travel experience, and the following is that story. I have also attached the PDF version of the book along with some pictures from that memorable trip.
After the story, you’ll find a health update as well.
Chapter 3
Amanda Bialack
To all women living in fear of the unknown– Life begins when you push through that fear and get to experience everything you’ve been missing out on. Push though, life is short.
When my Life Begins just outside my comfort zone
In my late twenties I started learning more about Judaism. I was born and raised Jewish, however my family’s version of the religion was lax, at best. I didn’t know much about Shabbat, Chaggim (holidays), or Halakha (Jewish law). I knew I liked matzah ball soup and that my whole family got together family twice a year, for Passover and Rosh Hashanah.
I always wanted to learn more and do more with my religion, but I never really knew where to look or how to do it.
After a failed relationship with an Israeli man, who had opened my eyes to a new world of more traditional Judaism, I begin my quest to learn even more about it. This journey lead me to a greater understanding of not only the religion, and the Jewish community, which I became a part of but also of Zionism.
I began to develop a genuine love for Israel, this magical country that for thousands of years was home to the Jewish people. To my people. I saw pictures of it– the beaches, the holy sites, the kotel (wailing wall). The food looked amazing. As I became more integrated in the Pico-Robertson Jewish Community, I started hearing about people going to Israel all the time, as though it was just around the corner. I started to know people who were making Aliyah (moving from another country to Israel). I joined a Jewish learning organization, and the learning partner I was matched with, Sarah, was a women from Connecticut, who had, six months prior, moved to Israel with her family. The draw to travel to Israel, and experience it myself became stronger and stronger. I had to go.
There was only one problem: At sixteen I had developed debilitating panic attacks as a symptom of Agoraphobia, and I was terrified of flying or going anywhere outside of my comfort zone. Just a forty-five minute flight to San Francisco was a horrendous experience for me! I’d have take Xanax, and basically struggle to fight off a panic attack for the first twenty minutes on the plane. Once I did finally arrive at my destination, I could never enjoy my experience to its fullest extent because of my panic attacks and uneasy feeling that living with Agoraphobia produces. Traveling anywhere was difficult, but the thought of going to the other side of the world, in a different time zone? It was out of the realm of possibility.
Then, at age twenty-nine, a series of important events took place in my life. First– I decided I was going to live to be ninety, and that I could not allow these panic attacks to interfere with my happiness for the next sixty years as I had allowed them to for the last fourteen. I begin taking my CBT exposure therapy seriously, and I went through the painstaking work of desensitizing myself to panic attacks and agoraphobic situations. Then, a thirty-six- year- old woman I knew, Heather, was diagnosed with terminal cancer. She spent the last year of her life talking about bucket lists, and living your best life with no regrets. She said, “If you want something, you need to go out there and get it, because you NEVER know when something could happen that will make doing it no longer possible”. So, I started small– with little flights here and there. I went on the Ferris wheel at the Santa Monica Pier. This may sound small, but it was HUGE for me! I also went to Catalina Island, where I went zip lining. Zip lining was something I had always wanted to do, but hadn’t out of fear. And then… I went to New York. I could not sleep the night before that flight. I was terrified. But I went! Following New York, I went to Mexico, San Francisco, Las Vegas, and Boston. Through all of this, I was overcoming fears and making up for lost time.
Fall is a busy time of year in the Jewish religion because of the many holidays. We call them “The Chaggim.” The season starts with Rosh Hashanah (the Jewish New Year), and is followed ten days later by Yom Kippur (the day of atonement). Then a few days later is Sukkot, an eight- day holiday during which observers eat meals in Sukkahs (huts) that people build in their yards, and the season ends with Simcha Torah. It’s a long few weeks with lots of food, and not a lot of working.
One fall day, Sarah and I were talking, as we often do. She was teaching me something about the upcoming Chaggim, as she has every year since 2015. We were talking about all our plans, and as she always does, she said, “Just come to Israel for Sukkot, It will be fun. I’ll pick you up from the airport.” This time was different though, because…. I said, “okay.” Of course, she didn’t believe me– So, I bought a non-refundable, round-trip ticket! I was going to Israel for Sukkot.
On October 2, 2017, I landed in Israel. I like to caption this moment by saying, “It only took me fourteen hours and thirty-one years to get here, but I finally made it.” And, I really did…. I FINALLY MADE IT.
Sarah picked me up from the airport, and we went directly to the old city. It was such an incredible experience to walk through its gates! We first went to Aish, where we wrote notes to put in the wall. The experience of going to the kotel, putting my note in the wall, and then touching it and praying, was a pinnacle moment in my life. I spent the next few days at Sarah’s house. She took me to the beach and boardwalk near where she lives. At the beach, we did Tashlikh together, which is a ritual performed during this time of year. I also put my feet in the Mediterranean and experienced warm beach water for the first time.
Side note: I had a halloumi salad at a restaurant on the boardwalk that night, and let me just say– Israel has incredible dairy! Their cheese is so rich and so fresh. The food throughout Israel was absolutely amazing. They don’t use preservatives and everything tastes fresh and delicious!
On Friday, Sarah drove me to Jerusalem, where I met up with my friend Nicki. Nicki set us up to have some Shabbat meals with a few friends of hers. It was truly amazing to be halfway around the world, in a Sukkah, saying the same prayers I say in Los Angeles on Shabbat. It felt magical. I was here! I had made it and I was having Shabbat in a Sukkah in Jerusalem. That Sunday I went to Yad Veshem, the Holocaust museum. I spent a few hours there doing the audio guided tour. The tour ends with the end of the Holocaust and the liberation of the camps. It left me with this overwhelming feeling of, “But what now, where do they go from here?” When you walk out of the museum, you come to a courtyard that overlooks the hills of Jerusalem. At this solemn and beautiful place, I thought to myself, “This is where they go, this is where they went.” It was one of the most powerful experiences of my life.
Monday morning I took a cab to Tel Aviv and I booked a hotel right on the beach. Nikki met me, and we spent that first day and evening together. As soon as we arrived, we put on our bathing suits and went to the beach. I had dreamed about the day I’d be at the beach in Tel Aviv. I wore my “Live Like Heather” Shirt. She, along with so many other things, had played such a huge part in getting me there. I felt the need to honor her, and so I did!
I was in Tel Aviv Monday through Thursday nights, and I spent every evening with the doors to my patio open, listening to the waves from the beach.
I spent my time in Tel Aviv seeing old friends, as two people I’d grown up with had made Alyiah and were living in the city. I went out one night with Nicki, and spent a lot of time at the beach. Sarah came down one day and we went to a museum and shopping! I left Israel the day Sukkot ended. It was the trip of my lifetime. It is an incredible place that I believe everyone should go to. I think it’ll feel like home to you, regardless of your religion. One may hear different things about this magical place, but to know Israel is to experience it for yourself– the nightlife and beaches of Tel Aviv, the holiness of the old city, the food, the people, and the culture are all truly magnificent.
Traveling is something I recommend to everyone. If you only live in a bubble of your own world and your own experiences, you’ll never truly know the rest of the world. We, as Americans are rich in ways other people, in other lands could never dream of. We can’t fully appreciate that fact until we see what someone else’s “normal” is. Traveling, for me, has opened my eyes to different cultures and experiences I could only ever see by going FAR outside my comfort zone. I can’t wait to start my next journey.
People frequently ask me “How are you doing? How is treatment?” and my response is always “Do you follow my blog”? I need to know how much info they already have and how far back I need to go.
I have been feeling good overall. Since my last scan I have realized that the tightness I sometimes feel when I breathe is not a tumor, but the clasped lung. My lung Dr. described it to me after my last scan that I have 99% good working lung, and 1% that wasn’t able to recover. It feels tight and sometimes like I can’t catch a full breath. But not in any meaningful way. This isn’t something I wouldn’t notice if I didn’t know. It really doesn’t impact me or effect anything. I have been running again. I am far from where I want to be as a runner, but I am getting out there and doing it and that is more than a lot of people without lung cancer!
My next PET scan is this Friday. Jack is going with his mom this weekend, and the twins are getting split up between my parents and Chris’s mom. Chris and I are going to San Diego overnight. I should have the results by mid next week.
Tomorrow is Thanksgiving. I am excited to celebrate. Thanks for reading and following my blog!
One year ago today was the worst day of my life, but I survived. I survived that day and the last 365 days. In these days of learning to live with a terminal illness, I also learned how to be a mom. I got married and learned how to become a wife. I learned how to be a cancer patient but also a cancer advocate. I went back to work almost immediately and continue to learn how to balance all of these things together.
At first, I prayed for a long life, that I’d beat this, that I could see my kids grow. Now, I pray for acceptance of God’s plans for me and the ability to live the best life possible. I still hope I can live a long life, that I’ll make it to 50. That’s my new goal age. I’ll definitely take more life, but 50 and seeing the boys be bar mitzvah feels like I’m pushing today’s life expectancy, but also feels within reason. I hope that my friends and I can still grow old and live next to each other in our retirement community, and that Chris and I will celebrate our 50th wedding anniversary (he’s less excited about having to live to 90 for this). My biggest hope is that science can always be one step ahead of me. Mostly, I pray to find acceptance and good health for as long as possible.
After the diagnosis, the invading thought of living like this, or that I have lived more life than I had ahead of me, was constant. It felt debilitating some days. Physically (BH) I’ve felt pretty good, but mentally, it was a struggle. I asked my Facebook support group how we ever learn to live like this. I got some great responses. I talked to older people in my life to see what it feels like to have lived more life than they have left to live. I asked them about their regrets and their happiness.
I have watched people die of this illness this year. Some months were particularly difficult because it felt like a lot of people died. Some stories were extra heartbreaking. I have watched people accept that they have reached the end of treatment options and watched them walk the path of dying that we will all eventually walk.
Death is a part of life, but we fight it off. I’ve noticed in myself and in my Facebook group that even when someone announces hospice, we are uncomfortable acknowledging they are dying. We are uncomfortable accepting that there is no more fight to have. I think as a society, we are trained to fight death to the very end. I’ve seen people in my own life fight it to the end, and I’ve seen people accept it and walk into their final chapter inspiring others, living authentically, and getting a chance to say goodbye to those they love.
I think of my birth father, Gerardo, and how much he fought death. Sadly, because of that, he didn’t leave his wife or children with his words or advice to remember him by. I’m lucky to have a handwritten note from him. It lives behind the picture of him in my hallway. Every time I change the frame, I’m surprised and happy to find it again.
This year has both moved like a snail and like the speed of light. It was a lifetime ago and the blink of an eye. It makes me sad to think that there is one less year of life left, something I don’t think a lot of people consider with the passage of time.
Today marks one year of knowing I am living with cancer. It was the worst day of my life, followed by the hardest but also the most fulfilling year of my life. I enter year 2 with the hope of my first-line treatment continuing to work and the hope that life, in general, gets just a little easier. I am looking forward to continuing to be an advocate, going on little adventures when I have to get my PET scans, having a stronger emunah in Hashem, and being a more present mom and wife.
Pickle (to those who don’t know, Pickle is one of my best friends, Her real name is Nicole, but I’ve called her Pickle since we were 16) and I recently had a conversation about how some of life’s best rewards have come wrapped in the most challenging packages. I can’t recall the exact context of our discussion, pregnancy, marriage and relationships, parenthood, navigating a difficult escrow, or just life in general.
She posed an interesting question: “Has anything truly worthwhile ever been ‘easy’?” This prompted me to reflect on my own life and respond “no.”
One of my favorite quotes is, “Be kind to everyone, for they are fighting a battle you know nothing about.” This serves as a reminder that everyone is grappling with their challenges.
I often think about those closest to me. My mom, for instance, struggled with infertility, which ultimately led her to adopt me. Likewise, my birth mother faced an unwanted pregnancy, making the difficult decision to give me up for adoption—a choice she has described as one of the most agonizing experiences of her life. Nevertheless, it resulted in an open adoption with me and my family. My husband weathered a divorce and left his career in the army, forcing him to move home with his mother and co-parent with her while rebuilding his life in his mid-30s. This spring, he graduating summa cum laude from USC and begin his master’s in finance program.
My best friends have had their share of struggles, including infertility, miscarriages, single parenthood, the loss of their sense of self to motherhood, the passing of parents, and heart-wrenching breakups. They’ve faced tough choices, made huge sacrifices, and overcome huge obstacles. I view them in the highest regard for their resilience.
As I pondered this blog, I coined the tagline “Turning Lemons into Lemonade Every Day.” and I decided this will be the guiding theme of this blog moving forward.
While I will continue to provide updates on my battle with cancer, which I hope will remain positive, I also want to explore what inspires me. I want to discuss what living life to the fullest means to me now that I’m living with a terminal illness and detail the hurdles I’ve had to overcome to find fulfillment in my life.
I’m excited to extend an invitation to my friends to guest blog about their own struggles, the challenges they’ve faced, and how they too have managed to make lemonade.
In the words of the late Dana Reeve, “Some of the choices in life will choose you. How you face those choices, these turns in the road, and the attitude with which you approach them, will ultimately define the context of your life.”
I am looking forward to this next chapter of my journey through life.
The lead-up to this PET scan was especially difficult for me. The ALKies call it “scanxiety.” It feels like having your mortality tested. Every thought attached to my mortality races through my head in the two weeks leading up to the PET scan. I feel like Eeyore with a cloud of sadness and anxiety hanging over me.
My therapist and I try to document the feelings and thoughts that come up and develop strategies for coping through the few weeks, but mostly it’s just about allowing time to pass and reaching the day when I know I’ll have results.
I had my PET scan at Kaiser West LA at 7 a.m. and met Hadassah for breakfast afterward. Then Chris and I went to Santa Barbara for the day. We took PCH the whole way. As a huge fan of the beach, it was a really peaceful drive and view. Chris and I get about 30 minutes a day, if we are lucky, to ourselves, so having a whole day just with him was wonderful. We went to the salt cave, had massages, and relaxed. We ate dinner at this cute New Orleans/Southern restaurant on State Street.
The way results work is the radiology report drops into my portal, and I get an email to alert me. My scan was on Saturday morning, so I was good all day Saturday. But Sunday night the anxiety hit. It’s hard to remain calm when your mortality report is due back. I had an appointment scheduled with my oncologist that Tuesday morning. The report still hadn’t come in by the time I left for my oncology appointment. Sunday and Monday felt like 600 years, and I was mentally exhausted walking into my appointment on Tuesday morning.
Chris went with me that morning. I started to go down the rabbit hole of fear. I didn’t have a report back because it was so bad they wanted to talk about it with me in person, and she didn’t want to release it to me. It turns out the radiology department was just backed up, and Dr. Anana needed to call to get it rushed that morning so that we’d have something to talk about.
My meeting with Dr. Anana went really well. We looked at the pictures from the scan together. The Christmas tree my body was last November was now just a regular-looking body. She said I could switch to scans every four months now if I wanted because there was no active disease showing. It felt reassuring but it didn’t hit me until we were pulling out of the parking lot, and the radiology report came in, and I read the words myself that said “No Evidence of Active Disease.” I broke down. Chris is used to me crying over everything, and he couldn’t understand why I was crying now after we’d just left the appointment where I was already told this. Seeing those words myself allowed the information to sink in and understand that I’m not dying today. I passed my mortality test. Today, Cancer isn’t killing me.
In the month and a half since this, it has felt like the burden of living with terminal cancer has been lifted a bit. I’m able to imagine a world where I get to watch my boys grow up, and I have had multiple days in a row where I forget I have cancer. It’s not an invading thought for the first time since my diagnosis.
October is a busy month. The little ones turn 1 on the 17th. My 11-year anniversary of quitting smoking was on the 1st (this lung cancer is completely unrelated to smoking, and I have now been a nonsmoker longer than I was a smoker). Our 2nd LA ALKies get-together was this past weekend. I’m speaking at the Genentech conference (the pharmaceutical company that makes my medicine) in San Diego next week. I have 2 escrows that have been particularly hard transactions closing next week, and my 1-year cancerversary is on the 27th.
At the end of the day, I am so fortunate that this is such an amazing life.
Last weekend, I attended the ALK positive summit in Philadelphia, and I had an amazing time. I took part in a panel discussion about having difficult conversations with friends and family. I also met with Genentech, the company behind the medication I take, and shared my story, which was videotaped. I had the opportunity to learn about all the research and developments for ALK positive lung cancer. But without a doubt, my favorite part was being surrounded by people who know exactly how I feel without needing any explanation. I even got to meet some of them in person, people I had previously only talked to over the phone, Facebook, or Zoom.
I’m thoroughly impressed with ALK positive as an organization. It’s a real nonprofit, with a board and executive director that raise money and awareness, and advocate for more research. They even have a medical committee that gets ALK specialists to give presentations over Zoom to educate us about ongoing research. In addition, there’s a Facebook support group and within it, a healing arts program that provides support and various outlets for both caregivers/partners and those diagnosed with ALK.
Two decades ago, this disease came with an 18-month life expectancy. People were too sick to organize at this level. Thanks to research and targeted treatments, we are now able to live healthy enough, and long enough, to do things like this—something I directly benefit from.
I attended the summit with the goal to make a name for myself within this organization & community, and I feel like I succeeded.
I wanted the board to approve my half-marathon registration for the charity half marathon within the LA marathon. I needed to prove that I could organize and manage a running group, and on our 2nd night there Lonna, the executive director said to email her and that she would approve it and get the needed paperwork to the necessary people.
While speaking with the Genentech representatives, I realized that my story is powerful, and that I can use this experience & my story to advocate.
My fears of public speaking began to dissolve this weekend, as I recognized this is what I’m meant to do with my disease: be an advocate, meet with pharmaceutical companies to humanize their research, and encourage further investment in more research. I want to fundraise for ALK positive so they can support more research through grants.
This isn’t something distant from me; it’s raising awareness, fundraising, and advocating for something that directly extends and enhances the quality of MY life.
This weekend allowed me to find my place and purpose within my cancer journey.
The below are posts from my whatsapp group detailing from the beginning of my cancer diagnoses and over the last 9 months.
10/28/22
I’m creating this WhatsApp group because it’s already becoming overwhelming to keep everyone updated with individual texts. And at this point there isn’t any updates but maybe we could also just all be here together as a support. And I can vent or cry to all of you or share ideas etc….. I’m slowly telling people in my life and will send them this link as they find out.
I spoke to my dr this morning and I just want to keep everyone on the same page and let you all know what I need. Some of you are medical people and know medicine and already know this from looking at the reports I’ve sent.
I have stage 4 metastatic adenocarcinoma. I already knew this was what it was going to be because the cancer originated in my lungs and is now present in at least my lymph nodes. The stage 4 is scary. But it is not unbeatable and if me and Chris are anything….. it’s odds breakers. I have the 2 most beautiful babies that I need to fight like hell for. And I’m going to. We don’t know what this path is going to look like and it’s scary.
And I appreciate all of your love and support.
10/29/22
From Chris to group:
Unshowered, half slept, and heading into the PET scan. My favorite person
From Amanda: Thank you everyone. I have honestly never felt so loved in my life. The pet scan went. It wasn’t bad or scary. I am radioactive today so I can’t be with the twins which is really hard. But that’s only for 24 hours which I must continue to remind myself of. At 10am I am snuggle them and kiss them again. Maria and Chris are taking the best care of them. @Christopher Stewart you are a gift from gd thank you for being there for me nonstop.
10/31/22
Thank you all so much for this support, for setting up tehillim groups and holy deeds in my honor. For joining our meal train and making sure we are fed.
This overwhelming amount of love and support is so meaningful and appericated. Thank you everyone.
Hi Everyone, We just met with the oncologist, Dr Adnan. She explained that todays lung cancer treatment is about genetics and the first step is sequencing my cancer. Which they are already doing and should know by tomorrow if they have enough or if they need to pull more and biopsy my lymph node. We are doing one additional scan before starting treatment to determine any additional spread. Once we have the sequencing back, that will allow us to determine the course of treatment. If they find a genetic match, they will be able to do genetic targeted treatment which means I would likely not need chemo and would only need radiation on small spots if at all, this would be a best case scenario, the initial goal is to stop the spread. The second goal is to shrink the cancer that I do have in the locations that I have it. However, remission is likely not going to be able to be achieved in the manner to which we all understand it. I will likely need meds for the rest of my life. And at this point I’ll take that. There are so many advancements in this field that any additional time I’m blessed with gives more opportunity to find a new treatments. We should know in the next 10 days the course of treatment I’m going to be on. It was a hopeful appointment and I feel cautiously optimistic for the first time since this whole thing started.
11/3/22
Jamie and I are big into snuggles today. Moments like this create the biggest improvements to my mental health. I also got good news on the MRI today which we are very grateful for. Lastly, I did a light workout with Miriam my trainer and went for a walk with Shlomo at sunrise today, to help start building my body back.
11/5/22
From Chris:
Singing to Benji
11/10/22
☀️ GoodMorning ☀️ We will start today off with some good news The results of the DNA sequencing came back yesterday and I have a mutation called ALK. The ALK mutation is very common for young healthy people. I’ve already found the support group and made a few new friends who have the exact condition and mutation as me. Watch out because i already know I’m going to be the next big ALK lung cancer advocate.
The treatment they will be starting me in is called Alectinib. It’s pills I will take twice a day that is targeted directly to the ALK tumors. It’s supposed to be well tolerated and has minimal side effects. They started with my baseline blood work yesterday and I should be starting the medicine in the next 10 days. As of now, no chemo or radiation. My oncologist, Dr Anana Is setting me up for follow up scans in 3 months to track progress. The current goal is that I respond well to these meds. That I am able to stop the spread, shrink what cancer I do have,and that my side effects will be minimal. People in my fb support & advocacy group have been on these meds for years and have achieved NED (no evidence of disease). NED is the ultimate goal!!! For the bad news of having cancer this mutation is a good one. There is tons of research going on, clinical trials, and there is a huge group of people who know a ton of information and fight for new medicines and research.
Also the twins had their check up yesterday and their dr saids they are perfect.
I write this text with Benji sleeping on me watching the sunrise from my bed. Chris also just sent me a picture that a new chicken that lays blue eggs has started laying. So today is going to be a good day!!
11/14/22
Wish me luck!!!!! Today is day 1 of what we are praying will be a long and successful journey on this medication!!!
11/16/22
This comment is just incredible and I’m going to print it out and read it daily. Grace commented on Rudi’s post about having a good CT scan showing his tumors shrinking.
11/17/22
Good morning ☀️ & happy Thursday
Many of you have individually asked Chris and I what you could do. It took us a little bit of time to figure out what the best answer is. First of all we greatly appreciate all the support and everyone reaching out. We’ve had a meal train everyday for the last month. There are 2 things we are now fully aware that we could use help with:
The babies are going through formula much quicker than we were anticipating. Thank gd they are both growing and eating well. I had been pumping and we were planning on that but had to stop due to all the scans with contrast, now the meds and my oncologist told me to just stop. This has proven to be yet another cost we were not accounting for. The babies are going through a container every 2 days. The kind they drink is below in a picture. If you are out and see this brand or want to know what we currently need. This is it.
We determined that it takes 3 people to take care of 2 colicky babies around the clock. If you’d like to come over and hold / snuggle / help with the very adorable twins that would allow a much needed break to recharge for one of primary caregivers. I’m going to make a schedule and any amount of time you can give is appreciated. Please private message me if you have availability / a desire.
Please do not in anyway feel obligated to do any of these things. We appreciate any amount of help.
11/18/22
One day late, but we’ve all made it thought the first month. And what a crazy month it has been. Cheers 🥂 to less eventful months to come!!!!
My book club read the book “between two kingdoms” last year. It is a memor about surviving a deadly cancer and continuing to live with the threat of dying. It’s a really great book if anyone is looking for a good read. The author had a relapse earlier this year and writes a weekly blog. The entry below, I identified with it very strongly.
For me, while I was waiting for all my test results and when the drs kept calling me with really bad and scary news I started telling myself these 3 things:
I can do hard things
I can handle whatever is thrown at me
today I choose to live the best life I can.
This entry from her blog is about handling what is thrown at you. We are so much more resilient than we give ourselves credit for.
This particular passage really resinates with me: “But I was wrong about one thing—that I couldn’t handle it. I could handle it, and I did handle it. Somehow it surprises me every time: how you fear something, and you think you can’t possibly endure it. Then when what you feared happens, you uncover new stores of strength you didn’t even know were there.“
11/24/22
We are soooooo grateful for the response in our request for help with formula. It’s very hard for me to ask for help and as thanksgiving comes to a close, I am honestly humbled and beyond grateful. Not only do we now have a stockpile, we now have a formula fund and were gifted a one months supply in the form of gift cards. It’s not just the people on this chat, it’s that you took this to your networks and those people, total strangers were moved by our story and contributed how they could. We ended thanksgiving with a sunset walk on the beach today feeling blessed and lucky. Thank you to all of you. Honestly thank you doesn’t even do how we feel justice.
11/29/22
Hello everyone 👋🏽 today I’ve been on alectinib for 3 weeks. When I started it I said I’ve decided this will work, for a long time and with very limited side effects. I’m a hypochondriac so I decided to use it for good this time.
A month ago my right lymph node felt like a pea that I was easily able to feel. This morning I felt for it and though still there, I had to push down to feel anything and it is no longer noticeable without searching. Last night, Chris said that he hadn’t heard me cough much the last few days. I had a dry cough for months that unbeknownst to me was due to the cancer and it has started now started to go away. This all means the medicine is working and shrinking the cancer in a real way. Not just my imagination.
I go in for blood work next week and I have my first set of scans in February. I continue to workout almost daily and plan to start running again for the first time since pre pregnancy next week. I’ve also gained 5 pounds back which is fantastic. 2 weeks postpartum I was 10 lbs lighter than when I got pregnant due to how hard pregnancy was on me and how I couldn’t really eat much and losing so much of my muscle.
Overall I’m feeling good and today is my first day back at work.
Here are yesterdays pictures of the boys, the lights of my life.
*Comments from family start about running a race together*
From Amanda:
Thanks, everyone! I really am very lucky within a very unlucky situation! I hope it stays that way for a very long time.
Probably a half marathon!!!!!
From Amanda:
This is great. We should pick a run in April or May and train for it and do it. I’m going to do mine and raise money for ALK positive which is the group I’m apart of for people with lung cancer and my genetic modification.
From Amanda:
Oh this is so fun. We should have a little team. Make shirts. Raise money for ALK positive research. Do a training run together in a Sunday. I’ll start looking up half marathons in that time period and we can all register for it together.
12/1/22:
The running group is formed. We set the goal of the Redondo Beach 10K on February 12, 2023. We set the goal to raise $1,000 for ALK Positive (https://www.alkpositive.org/)
12/1/22:
I’ve got a long way to go but for 6 weeks postpartum, after a very difficult pregnancy with stage 4 lung cancer…. I’ll take it. Can’t wait to do our race together and cheer each other on!!!!!
12/20/22
From Hadassah:
Amanda making her dreams come true. Happy chanuka ❤️
*The Backstory to this is that I’ve always said despite how unjewish it is, I want bagpipes to play amazing grace at my funeral. Tamar, for my birthday present got me a bagpiper to play for me as a surprise. I started crying when a man, dressed like this, playing a bagpipe walked in her door at what I thought was just our families hanging out and celebrating Hanukkah together.*
1/11/23
It has been a while since I last updated the group on how things are going. They are going really good. Physically I’m feeling really good. I’m running again and working out. We have the side group for running and we have signed up for the Redondo beach 10k on Super Bowl Sunday. The symptoms I had before the medicine, the cough and chest pressure from the fluid are gone. I don’t know if the fluid is gone but it’s not causing the same pressure or hard time breathing anymore. I have blood work done monthly and so far they have said my liver looks fine but I am anemic and they want me to start taking iron supplements. I have my first round of scans scheduled. My PET scan will be 2/17 and my MRI will be 2/20 and I meet with my oncologist to go over everything that week. Prayers for good results are be appreciated.
Physically I feel good. The real struggle (And I’ve heard this from many others from my ALK+ group that share my diagnosis) is the mental struggle. Knowing that I have no control over when my cancer mutates, when my medication stops working, when my quarterly PET scan will show progression. When I die. The reality is no one knows when their last day will come but with this diagnosis it feels like I’m walking around with a loaded gun at my spine and I don’t know if it’s going to go off and graze an organ or if it’s going to kill me. It’s a absolute mind fuck. There are some days where the reality of my experience is debilitatingly sad and I’ll cry. Chris will see me and ask what’s wrong and we’ve now mastered that with one look he knows what I’m thinking. I am really good at honoring my feelings. I don’t suck anything up. I feel how I need to feel and I have a ton of outlets. Good Friends, therapy, and alanon. The silver lining, and as you all know I’m a glass half full type person is I am truly living like I’m dying. Both Chris and I have said recently that we’ve never been happier. When you are so aware that your days are numbered you make everyday count. I think Chris and I are both living this way as much as possible. I can honestly say I have the most blessed life. My biggest hope is I get to continue living it for as long as possible.
Thank you all for the constant support, love & prayers. I want all of you to know that you can talk about this to me. Everyone in my life experiences this from their own perspective. And I can honor that. When people think they aren’t allowed to have feelings or can’t talk to me about it because how can they have feelings when I’m the one with cancer. I want to remind you Everyone here is someone who knows and cares about me. Chris has a almost wife and mother of his children with cancer, My parents have a daughter with cancer, my friends have a friend with cancer, Jack has a step mom with cancer. My siblings have a sister with cancer, my colleagues have a colleague with cancer. I’d rather have real conversations and not have people feel guilt about having feelings. It makes for more real and genuine interactions. We all know there’s an elephant in the room so let’s just address it. I’m not dying today (well I might be but it’s not the cancer). Asking me how I am is so much better than tiptoeing around me and with this topic.
I hope you all live your absolute best lives today. Today I’m going to Disneyland with my future husband. My bonus son, my godson and my best friend. Tomorrow I’m meeting a women from my ALK group got coffee and showing houses to my new client which I’m excited about. Life is good. I hope yours is too.
1/31/23
So many positive updates to share:
I went to the see Dr Dai (my lung dr) last week. He and the radiologist reviewed my last X-ray. There are pictures attached are of 3 X-rays. The day I had my lung drained when they found out I had cancer, then December, then 2 weeks ago. The findings compared my last X-ray in December.
Our running group is getting ready for our first fundraising 10k which is 2/12. This past Sunday, me and Shlomo ran our longest run since giving birth and being diagnosed. We did a 4.5 mile sunrise run at the beach. It was wonderful. I got our fundraising page set up.
This story starts with my PET scan. My PET scans turn me radioactive because of the contrast. I found this out during my first PET scan when they told me the day of that I couldn’t be around the twins for 24 hours (because of how young they are). I didn’t make any plans, so I was forced to be “with them” but not able to take care of them. Chris and Maria (Chris’s mom) cared for them those very sad 24 hours. After this happened Chris and I decided that every time I have to get a scan (which is once a quarter for the rest of my life) we are going to turn it into a weekend getaway just the 2 of us. We also decided during this conversation that we are also going to take 2 good family vacations a year. This will allow me to create memories with our family while I am here, and leave photos for them when I am not. This is so important to us that we opened a high yield savings account and decided all gifts to us moving forward we only want deposits into our “making memories” account.
Which leads to the next big update. Chris and I are getting married on 2/16. We are having a small wedding. Going to the beach and our friend, Joe is marrying us and then we are going to our other friends, Nicole and Sean’s house for a sweat pants taco party. It’s exactly what I want. I knew I needed my first scans in mid February so I planned our wedding, going out of town for our honeymoon and my scans to all coordinate.
And lastly, our chickens at the “Stewart & Sons Chicken Farm” are now laying eggs! We are selling them with proceeds going to our ‘making memories fund’. If you’re interested let us know! They are organic and delicious!
Next up for our memory making is pismo beach / sycamore mineral springs for our honeymoon. In May we are going to New York to celebrate Chris’s college graduation and his 40th bday and our family winter trip will be to Disney World.
Thanks for all your support and prayers and love. It’s so appreciated!
2/5/23
Next Sunday is the 10k that our running group is fundraising for. Today was my longest run since pre pregnancy and pre cancer. I felt great. My goal is to improve my pace / time, but I’m still really happy I’ve gotten this far. Our fundraising has also been incredible. Pickle, Tamara, Martin & Becky, my Tia Pier, Melissa and David & Andrea have raised almost $6,000 and we have 6 more days left. Our original goal was $1,000. The social media posts, reels, and emails sent out were so heartfelt and loving. It’s like being memorialized while I’m alive. I’m so proud of all of us. Our group. Our fundraising efforts and our running. This was a trial run for me. My plan is to have an annual fundraising group / run for the LA marathon charity half marathon. The money raised for ALK positive (the nonprofit) goes directly to funding research for treatments to give me more quality life.
Just today I was in a zoom meeting sponosored by ALKtalk of ALKpositive with a Harvard researcher talking about his research from the grant ALK positive gave him On immunotherapies. He’s in stage 1 of his clinical trials right now
2/12/23
Today our running group ran the Redondo beach 5k & 10k. We had 5 runners for the 10k and 3 runners for the 5k and a whole bunch of people in the cheering squad. We raised $7,550 for ALK positive (the nonprofit).
Today was the furthest I’ve run in over a year. I remember being pregnant and being so sick and in so much pain. I dreamed of not being pregnant anymore so that I could run again. Then I found out I had lung cancer and I was devastated when I realized I was never going to be able to run again. Because of science and advancements in lung cancer treatment I was able to run 6.2 miles today.
Thanks to everyone in this group who joined our running group, or the cheer squad. Who helped make today possible and who donated to our fundraising efforts.
2/13/23
Thank you everyone. And some additional good news from my oncologist this morning. My liver functions are normal, which is what they monitor because of my meds. And I’m no longer anemic and can stop taking iron supplements!!!
2/20/23
So much to share: Chris and I got married last Thursday. It was exactly what we wanted and was so much fun. We just got home today from our honeymoon. Which was also wonderful. Pictures to follow:
And now for the health news: My PET scan was Friday and the results came back today. I had my MRI today but those results will take another few days. So far though the PET results look really good. I’ve attached them for those in the medical field. And for those not I’m still waiting on some clarification but from what I can understand Most of the metastasis is no longer showings up. No lymph system as before, no bone spots, and nothing in my liver. The primary tumor is shirking but I’m not sure how much. And the notes about swollen throat is because I have a throat infection from last week that I should be starting meds for tomorrow.
Thank you everyone for all your support and continued prayers & love!
I just got the results back from my MRI and I have a unremarkable brain 🎉
5/14/23
Mothers Days Posts from Christopher to Group:
The luckiest guys. Happy Mother’s Day babe 😘 I loves
5/24/23
B’H my PET scan results came back stable. I’ve not gone over them in great detail yet but the impression section showed continued improvement and stable findings. I’ll post the PDF of the radiology report later in case anyone is interested in reading it. I put it though chatgpt to explain it in more detail to me. This is going to be a every 3 month thing for my foreseeable future. The ultimate goal is to continue with results like these to give science a chance to catch up and a cure to be found. A cure and research for new treatments and cures are already in the works. Who would have thought that AIDS would be something people lived with? I hope my cancer is that way too.
If anyone is interested in learning more about ALK+ cancer or the advancements taking place I’d suggest signing up for the newsletter from ALK positive and coming to any of the zoom meetings they do. They are REALLY informative and also provide a lot of hope. https://www.alkpositive.org/
ALK+ is doing a summit in Philadelphia this July which I will be attending. I’m looking forward to meeting the people from our FB group in person and hearing the speakers who are on the front line of research right now. Our running team and our supporters raised over $8,300 for our first fundraiser and that money gets turned into grants that alk+ gives to researchers. Then the researchers do zoom meetings for us to talk about their advancements.
Living with, what is currently an incurable cancer, and being a part of a support group which regularly has people dying puts a weight in me that I can not describe. Some days I block it out completely. Some days I spiral into horrible depression. Some days I make jokes about pulling my cancer card. Then there are some days. Like today. Where I just get a good scan and for 1 day I can just be happy about a good scan.
I also want to thank everyone who has contributed to our making memories fund. We went to New York right before this scan. We are amazing food and discovered our. We love of dim sum, got some rest from our adorable children. Explored Manhattan, saw my friend Devorah and saw Hamilton on broadway. Because of our making memories fund we didn’t have to come out of pocket for this. So thank you all soooooo much!
I love and appreciate everyone on this group.
And now here are some pictures from New York. PET scan report to follow.
My next PET scan will be August 19 and for my radioactive getaway we are going to Chumash Casino & resort for some fun gambling and couples massage.
I had a chest X-ray a few weeks ago and my pulmonologist said it looked good and the radiology report used fancy words to tell me it looked really good too.
Life continues on in the meantime. The babies are going to be 9 months old in the next week. Chris is really enjoying his summer internship at a wealth management company and I’m writing this text as my Tesla drives me home from Hanford, Ca where I toured the property I own and met with my new property manager.
I’ve also added a new item to my bucket list which I’m still fine tuning the details and what this looks but, I want to go to weddings of different cultures. I think weddings are fun and I think seeing how different people do them is fun too. I’ll keep everyone updated for that one Indian friend getting married in 6 months that youll score me an invite too 😘
I shall leave you with this “Life is for the living”!
7/17/23
Last night we had a pre summit dinner for some of the Los Angeles ALKies. I started a WhatsApp group for the LA people so we could arrange get togethers & be support to each other and one another’s families through our journeys. It was so nice to cmeet more people in person. The picture of the 5 of us is just those of us with ALK+ and the bottom one is everyone who was at dinner minus Chris because he had to leave early so he could wake up for his internship this morning. Of the 5 of us, 4 of us are all within a 5 year age range of each other. Michael, who’s to my left was diagnosed is his late 40’s 17 YEARS AGO!!!! Science has always stayed 1 step ahead of him. I also turned off comments but feel free to send me a private message.
Amanda's Journey Through Life 