The date was November 30, 2017. It was my new son-in-law’s 30th birthday. Blake and my daughter Casey had married that September in Montauk, NY on a glorious fall day.

It was also the day I went in for a brain MRI to determine why I had been having multiple bizarre symptoms in my face and head, mostly on the right side. I had had stereotactic radiation in June for a brain tumor that was surgically removed in May, and had assumed the symptoms were side effects from that, as they were on the same side of my head. Unfortunately for me, that was not the case.

My oncologist at Memorial Sloan Kettering (MSK), Dr. Fiore, had my husband Jim and I come in that day. The MRI results were grim. I had multiple tumors and lesions in my brain and leptomeningeal fluid, some as large as 3 cm. It was really scary in that I had been through similar scenarios over the past 3 years – lung cancer, endometrial and ovarian cancer, and the brain tumor – but the path forward in all those case was clear: surgery. What was going on in my head now could not be surgically removed because it was everywhere – too many to count, Jim was told when he asked. Dr. Fiore sent me to a colleague, a neuro-oncologist, for his opinion. Jim, Casey and I all met with him. He was horrible – the worst. No bedside manner at all, and he said my only recourse was whole brain radiation (WBR) which was totally not acceptable to any of us. We couldn’t get out of there fast enough. I was really scared at this point.

Back to Dr. Fiore, who agreed I should not have WBR except as a last resort and thought I should try a relatively new 3rd generation targeted therapy drug. When I had my original lung surgery, I had the tumor analyzed for mutations, and my driver mutation is an exon-19 deletion, which is a common EGFR mutation. My brain tumor looked so similar on slides that it was assumed the tumor was a brain metastasis (met) of the lung cancer. The new tumors were assumed to be new brain mets. ( Exon-19 deletions have an affinity for brain mets). EGFR mutations have a number of targeted therapies used in their treatment. To make a long story short, this drug, Tagrisso, was not yet FDA approved for first line use (my case) but it had been shown to cross the blood brain barrier better than the previous drugs. Dr. Fiore thought he could get FDA approval quickly, and that I could potentially be on the drug by the following week. It was really the only option, though there was no way of knowing whether it would work.

I started Tagrisso the following week. It is very expensive but I am very lucky that my insurance covers it. I had also started taking steroids, which very quickly made my symptoms improve as they really decrease brain inflammation. (They work well, but I hate them as they make me jittery and interfere with my sleep). A spinal MRI on December 20th showed the cancer in my spinal fluid as well. I started researching Lepto-meningeal Disease (LMD), but very quickly read that it was terminal and freaked out. My family forbade me to do any more internet searches and just let them do it.

Casey and Jim discovered while researching LMD that the actress Valerie Harper was diagnosed with it in 2013 (she has the same mutation as I do as well) and was still alive and talking about it. The two of them decided that I should see her doctor for a second opinion. His name is Ronald Natale and he is at Cedars-Sinai Hospital in Los Angeles. So we four (Blake included) flew to LA for a few days to see him and have some much needed time away.

By this time it was early January and I had not yet had a follow up MRI so we had no idea if the treatment was working. I wasn’t any worse and the steroids had eliminated the symptoms, but I still wasn’t feeling great. Our appointment was on a Monday and we got out there for the weekend, so we did get to relax a bit and do some sightseeing, but it was cool, rainy and rather depressing. The four of us were waiting in a room for the doctor, when he walked in, came over to me, showed me my case files that I had had sent over and said “This is the most horrible story I have ever read.” Not exactly what I was waiting to hear! He was a lovely man, as it turns out, and talked to us for a good hour. He agreed with my course of treatment, told me that I looked like it was working (I had started feeling a bit better) and that he was sure my next MRI would show improvement and that it would further improve over the next few months, at which point he thought it might stabilize. He also discussed what possible options I would have at that point. Valerie Harper had agreed to let him discuss her case so it was very helpful. If nothing else, just knowing that she was still doing well over 4 years post diagnosis, was somewhat hopeful for me.

Weirdly, throughout my previous 3 bouts with cancer, all pretty serious, I had never actually thought I might die. This time was very different. I had read that LMD was a terminal disease and truly believed that I would likely die from it. I even saw my lawyer and put my affairs in order. After a few months though, my attitude slowly started changing. My scans showed improvement and I thought I might be around for awhile at least. I think the turning point for me was when I decided to rip out my rose garden of 25 years (what was I thinking, still spraying roses after 4 cancer diagnoses?) and plan and plant a new garden designed to attract butterflies and hummingbirds. This only makes sense if you think you will be around for awhile to see how it grows……

So here I am over 3 years later, still on Tagrisso, and I have far exceeded Dr. Natale’s expectations and Dr. Fiore’s as well. Valerie Harper, sadly, died in 2019, which I took very badly. She had always been a beacon of hope to me. I am lucky in that the treatments for lung cancer had come so far even at that point, that I had a big advantage. My new garden is well established now and watching the butterflies and the hummingbirds is a continuing source of joy for me. I have decided that there are places I want to go and things I want to do and experience in the time I still have left, however long that is. I am going to make the most of it! When life gives you lemons, make limoncello.