Somehow I blinked and it’s June. It’s been more than four months since my last post, talking about my 60th treatment. Little did I know at the time, my treatment was no longer as effective. It’s been a wonderful, busy four months, as you’ll see, but it’s also been really hard at times and both the highs and lows keep me from finding the time and headspace to put my thoughts into words. 

In early February, right after my 60th treatment, we traded in the brutal cold for the warm sandy beaches of Punta Cana. We had so much fun in the sun swimming and drinking Pina coladas that the girls still request to go on “bacation to Punta Cana again” regularly. 

On 2/19, just a few short days after we returned I drove to MSK for my regularly scheduled scans. I felt fine, my bloodwork was good, but the scan was not. This was the first time I didn’t read the impression report ahead of time, and looking back maybe something subconsciously told me not to. At my 2/23 visit, my doctor entered the room without her usual “great” introduction, which is what I was accustomed to hearing having had stable scans for so long. My heart sank as the word “progressed” came out of her mouth. Some of the tumors in my liver and the one on my pancreas were no longer stable and had started to grow again. This meant my time on Zeno, the drug that gave me 8 months of a terrific quality of life, was over. Devastated is an understatement. This drug, the one meant to specifically target my NRG1 mutation, stopped working after only 8 months, but the chemo I was on before worked for almost two years? How could that be? I’ll leave that to the scientists to figure out but damn was I hoping Zeno would carry me further. 

But there is little time to waste and a new plan forward was decided upon at that visit. I was to continue Zeno, since it was still keeping some of the cancer at bay, while I waited for a PET scan, liver biopsy and a radiation consult. 

My radiation consult was just days later that same week. Meeting with my radiation oncologist reinstalled a sense of hope. After reviewing my scans she told my husband and me that she likely can successfully target the tumor on the pancreas and ALL of the tumors on the liver, which was about 10. While 10 sounds like a lot, that number used to be “innumerable” and no one to this point could even provide an estimate of the number of tumors in my liver. Radiation would be done using the MR Linac machine, which is a newer, more precise technology and that meant traveling into NYC for each treatment. The schedule was booked until end of March but we left feeling optimistic that radiation was the next step of the journey – and ready to pack our bags yet again! 

With my PET scan scheduled for 3/16 and liver biopsy 3/19, I am so grateful to my husband who insisted we seize the moment and had us on a cross country flight to sunny Southern California just a day after my radiation consult. I barely had time to unpack the luggage from Punta Cana in between all the doctor’s appointments and now found myself re-packing the whole family in a day. But I have always believed in “if there is a will, there is a way” and that applies to so much more than packing a suitcase, or multiple suitcases, for me today. Saturday 3/14 we landed at LAX and from there made our way down the California coast through Newport, Laguna Beach and La Jolla. The girls got to swim in pools, play in the sand and splash in the waves at beaches, see sea lions and seals up close, take a dolphin cruise and spend a day at both the San Diego Zoo and Disneyland. It was the perfect mix of action packed, nature and leisure. On the last day, none of us were ready to say goodbye and head home. 

Two days after returning home I was back at MSK for my PET scan, and then at my oncologist’s office in the city the following day, which happened to be St. Patrick’s day. But let’s just say the luck of the Irish was not with me that day. The PET revealed that the cancer grew even more than we hoped since my February scan. A systemic approach was needed to get ahead of the growing cancer and that meant forgoing radiation for the foreseeable future and going back on chemo. All the hope that I had felt from what felt like a real chance to destroy the growing tumors was instantly deflated. 

As I had just caught my breath and wiped my tears away from the initial news, I was now reaching for the tissue box again after learning that the chemo of choice would cause hair loss. I have learned to let a lot of things go since my diagnosis, including the image of the person I used to see in the mirror. So for me, losing my hair wasn’t about me being vain, it was about my girls looking at me and not seeing “mommy”. I had been fortunate to make it 2.5 years into my cancer journey without looking sick, without looking like your typical cancer patient and all of that was about to change. We discussed the two week on, one week off cadence for the chemo and also the use of the cold cap to help prevent as much hair loss as possible. And I am pleased to report, that despite the torture that the cold cap is, I still have most of my hair and look like “mommy”. My eyelashes have left the building, but I know they’ll be back one day. 

As all of this news was swirling around in my head, my oncologist assured me that while we have hit a bump in the road, I still had treatment options available. My liver biopsy went on as scheduled for 3/19. On 3/24 my husband and I went to register our oldest daughter for Kindergarten, and of course I cried. Seeing her off to Kindergarten was a milestone I was determined to be here for when initially diagnosed and it is almost here. Before chemo even started, my husband, knowing how important keeping my hair was to me, drove me to any wig place I wanted to try. I am so grateful the wig I placed on hold remains on hold and I pray it stays on hold. On 3/25 I had my first round of Gem/Abrax with the cold cap and tolerated it all better than I anticipated. Saturday 3/28 we celebrated our oldest’s 5th birthday at a bouncy place, as she calls it, with a beautiful KPop Demonhunter cake and so many of her friends and family. I am so thankful for all the sweet friends she has made during her time at daycare. We couldn’t forget to celebrate Papa’s birthday that day too with a carrot cake! 4/1 I was back at MSK for chemo and cold cap and 4/2 Livvy had her 2.5 old well visit and Emilia celebrated her birthday in class with friends. On 4/3, Emilia’s actual birthday, she woke up to balloons and streamers dangling above her bed and doorway, and chose Ramen (soupy noodles as she says) as her birthday meal. We spent a good portion of the day putting together the extensive Lego friends hospital set that she wanted as her present. 

We celebrated Easter briefly with my parents and family, the fatigue from chemo does wear me down some days, believe it or not. Sundays are my hardest. The following weekend since I had a break week from treatment we road-tripped to Delaware to see Aunt Kate, Uncle Patrick, cousin Hailey and our newest cousin, baby Hannah. The girls got to dance around a garden as fairies and share toys over lunch. I am so grateful that despite the non stop treatment and appointments my quality of life has barely suffered. In ways it’s almost better because cancer reminds me to seize every opportunity and I love that my husband is always on board too. 

The next several weeks were a bit more routine with treatment two weeks on, one week off. Okay, maybe not exactly routine- On 4/25 my family and friends from near and far gathered in Parsippany to support me during our Third Annual Purple Stride, where I was the Survivor Speaker. A bit nervous, and a bit rainy, but I think I pulled it off. Together we raised an incredible almost $7K. I can’t thank everyone enough for all of their support, whether through generous donations, walking alongside me, or support from afar. It all means so much. My sister Angela will be taking on the important role of Purple Stride chair for next year’s event and I am so thankful she stepped in at the right time and I know she will make sure the event succeeds and exceeds all of our expectations, that’s just the kind of person she is. For Mother’s Day we spent the day as a family of four, went to swim lessons and then had a nice dinner together with Grandma, Aunt Nancy and her fiancée Daniel.

The next week it was back to the regular routine of physical therapy sprinkled in between to keep up my weight and muscle mass, birthday parties and swim lessons. I breeze by physical therapy all the time but I do need to emphasize what an important role they are in my life. My amazing PT Tara and really all of the staff there have helped me bounce back to health from my weakest self. I typically go twice a week to do a range of workouts from strength training, to agility, to stability, and cardio. They are my personal trainers who help keep me strong and have been for the past 2.75 years. Add to it my nutrition visits and psychology appointments- cancer really is a full time job. All of that led up to my next scan on 5/18 which I really really needed to be good news. 

And good news it was! On 5/19 my oncologist said that the chemo was keeping the cancer mostly stable so we could reengage the radiation oncology team, who in turn agreed we could move forward with the previous plan of targeting both the pancreas tumor and the liver tumors. I left that discussion with a weight lifted and a restored sense of hope and faith. 

On 5/23 we had fun celebrating Nonna’s milestone birthday as a family with a hibachi party despite the pouring rain and on 6/4 both girls had their dance recital which was beyond adorable, it was perfect that for one year they could both be on stage together. On 6/7 we celebrated Grandma’s birthday a day early with a family BBQ. The following weekend we took a road trip to celebrate Juliana’s first birthday and see my oldest friend Lauren. I am so glad we are still friends more than 20 years later.

As of today, I am finishing my 71st treatment and will then have a much needed short break from treatment until I start radiation on 6/30. And when they say “God’s timing”, amen did he get this one right. After I wrap up this chemo session, the girls and James have a three day weekend and yet another opportunity for some family fun. Next week Emilia has her pre-k prom and then finally the highly anticipated pre- k graduation. And somewhere in the mix she will start summer camp to meet new Kindergarten friends and attend Popsicles in the Park for another opportunity to meet incoming kindergarteners. As a mom, I am so relieved and grateful that all of the above happens during my two week treatment break and I won’t miss out on any of it. 

Because on 6/30 our world is about to be turned upside down again as I begin radiation over a two week period in NYC. Two days one week, three the next, for a total of five sessions, which doesn’t sound terrible, but each session is two hours long, in a MRI machine. When they did my simulation I had quite the anxiety attack and have since learned that a blind fold, music and a little Ativan are my best friends. Hoping I can find the strength and mindset to do this five times over, but yet again “if there’s a will, there’s a way”. 

We have yet to know what our lives will look like post radiation- how I will be feeling, what treatment I will be on after, what the post radiation scan will reveal. The unknowns can be intimidating but I’m oh so hopeful things will fall into place exactly as we need them to as we strategize the next stages of my care. But as long as I can have the quality of life I’ve had throughout, I won’t stop traveling, and doing, and seeing, and being mom, and all the things, because life is too short not to do when you have the chance. Getting Emilia to Kindergarten was my very first milestone I set for myself and now that it is almost here, it is time to reach even further and say that “God, I need to be here to see Livvy start Kindergarten.” Living life one day at a time, one milestone at a time. 🤍