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.