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:

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

11/5/22

From Chris:

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

11/16/22

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:

1. 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.
2. 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

11/21/22

From Amanda:

https://theisolationjournals.substack.com/p/survival-skills?r=1fj442&utm_campaign=post&utm_medium=email

Something to share:

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:

12/20/22

From Hadassah:

*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:

1. 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.
2. 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.
3. 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.
4. 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.
5. 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!
6. 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.

Below is a copy of my PET scan

2/22/23

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.

7/12/23

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.