My fine needle biopsy is negative after the carbo-taxol weekly regimen. My lymph nodes are clear. I'm relieved, pleased, and a little exhausted. This was the message that I was expecting on January 9 but did not receive. My surgery is now scheduled for May 5. The four months of treatment returned me to exactly where I was on December 26, 2022, with the addition of a swanky port and the aura of love and support directed at me by so many friends and family. For the next few weeks, I do not have cancer. I will have a bilateral mastectomy with DIEP flap reconstruction in 15 days. Of course, my breasts and lymph nodes will be analyzed to confirm there is no evidence of cancer, and only upon completion of pathology can I be sure that I am cancer-free.
Surprisingly, no one called me with the good news. At my April 18 infusion appointment, I found out I was cancer-free when the medical assistant called me back into the infusion center and asked if I was ready for my first AC infusion. My response was that I was not having an AC (adriamycin cisplatin) infusion today. I knew that if the biopsy was positive for cancer, I would need AC. I figured someone would have called to tell me that. AC would be a full day experience with pre and post cooling using Dignicap, plus pre-treatments and likely food. If I required AC, I needed my chemo kit and my chemo buddies/drivers. So even if I wasn't cancer-free, I wasn't having AC that day. We were both confused, and she messaged my team.
It turns out that the oncology team assumed the surgery team had told me my final pathology. When I sent a MyChart message asking for the final pathology, the team was confused and horrified. And called right away. As I told them, there is no need to apologize for giving me excellent news! It is astounding that a particular communication ball got dropped. Naturally, I was annoyed that everything wasn't tightly coordinated, but I chose to see it as a bit funny. As a patient, it's important to listen well and be willing to advocate for what you were told was happening - or ask questions if not.
Celebration
Completing chemotherapy and getting a cancer-free all-clear, technically a CCR, "Clinical Complete Response," is cause for celebration. I invited friends to celebrate with me, my husband, and my first four. The ladies all wore the Team Joelle T-shirt. We all enjoyed a little champagne, veggies, cheese, chips, and chocolate cream pie (well - I enjoyed the chocolate cream pie). It's great to share good news with people and feel the genuine love and relief they experience.
Testing the limits
Due to chemo, I missed most of the 2023 ski season - an epic season, and I am sad that I didn't get time on the slopes due to my cancer journey. On Saturday, April 22, Neal and I elected to attempt a late-season ski day at Alpine Meadows. I decided to take it easy, do a couple of runs, and enjoy Tahoe's blue sky and beautiful scenery.
Need to factor in altitude.
I managed one run. I've been skiing since I was 6, and this is the first time in my life that I could only do one run, and it was not pretty. The altitude and accompanying oxygen levels felt exhausting. My feet were screaming from the lack of circulation. My legs tired quickly from carving the heavy, melting snow. Neal was great - supportive and even skied slowly with me. If you've ever skied with either of us, you know that "slowly" is not one of the top ten words to describe the experience. It was a bummer.
I was sad and frustrated as I sat on the slope, catching my breath. For one of the only times in my cancer experience, I felt physically weak, and it made me feel bad. I like feeling like a powerhouse, and for the most part, I thought chemo hadn't knocked me too far backward. Trying to ski in spring, slushy conditions on a gorgeous day, having trouble carving turns, and catching my breath were definite reminders that my body was weaker than ever. Logically, I thought my strength would rebuild. Emotionally, I was crying with frustration and disappointment.
My husband loves to ski, and I was disappointing him too. He was wonderful. He waited patiently while I rested. He filmed my skiing to show our kids that I did it. He preferred to sit with me when I said I would sit at the base picnic tables and he could ski. There wasn't a moment that day where he was concerned about his own enjoyment other than being with me. Again, I am grateful for being loved and appreciate being supported on my journey.
The day was beautiful, and it was funny to watch locals in costumes playing ski golf (an Alpine Meadows tradition we didn't know existed). I decided I couldn't ski safely and offered to wait for Neal, but he wanted to rescue the day with a nice lunch. We enjoyed a delightful lunch in Truckee, and the next day, my friend Majid and his adorable 2.5-year-old daughter visited us at the lake. Nothing is more life-affirming than piloting our boat around the lake with an enthusiastic toddler helping me drive!
It's hard to be patient with my body as I want to jump back into all the fun things in my life. I'm so lucky that I felt well enough to travel (twice) to see Taylor play baseball. I've made it to almost every soccer and lacrosse game for Ariel, plus her musical performances. I'm super bummed that I won't be able to see any of the NESCAC baseball tournaments in person because it's right after my surgery, but thankfully, the streaming is excellent. I feel like "me," but my body reminds me it's not close to 100% yet. I've exercised through my entire treatment thanks to Jessica, Tracey, and James - and primarily, I've maintained much of my muscle strength while losing considerable endurance. My Oura ring continuously reminds me that my resting heart rate is elevated, with my HRV balance and recovery index in the red. The surgery on May 5 is going to set me back further for a while - but after I recover from that, I'll be laser-focused on rebuilding my endurance and my strength. I plan to enjoy the summer while I rebuild. Our Big Sky trip is already booked for December, and my focus is on ensuring I can play with my family in the snow in six months without being impacted like I was in April at Alpine Meadows.
Keep your seatbelt on - May the 4th be with me.
Surgery was moved to May 4. Almost definite. 🥺
My surgery is expected to run from 830am to 630pm. It's a very long surgery. There are 3 surgeons plus 3 residents or fellows - plus everyone else in the OR.
After recovery, I'll be in the UCSF Mission Bay ICU for two days. The team checks everything about me hourly for 48 hours, specifically the blood supply to the flaps that will construct the lower half of my new breasts. There are a lot of incisions. Six (6) drains!
I'll spend another day or two in the hospital until I can walk and shower. I will be hunched over as my belly will be very tight. I don't know how long I'll be hunched over.
A revision surgery will be done 6-12 months later to resolve any issues. It will take about 12 months for my body to "settle" into its new normal. I won't be able to lift more than 10 pounds (total) for 3 months. I'll likely be napping and groggy for a few weeks once I'm home.
It's called a DIEP flap for those who like to Google things.
Iyar - the month of healing
Throughout the last 4 months, the support, love, and engagement with my community of family and friends has been nothing short of incredible. I am blessed to be well-loved and well-connected to all of you. Some of you are Caring Bridge regulars. Some of you text. Some of you call. Some of you cook. Some of you drive. Some of you visit. Some of you pray. All of you have lifted me and my family up, and we are forever in your debt.
The Month of Healing by Chabad Rabbi Yudi Steiger of Chabad Park City...(thank you, Neill B)
We just entered the Hebrew month of Iyar. This month is known as "the month of healing", since the acronym of Iyar is "Ani Hashem Rofecha", "I am G-d, your healer."
In 1977, the Rebbe met with Professor Mordechai Shani, the then-director of Sheba Hospital, the largest hospital in Israel. He asked him to consider changing the hospital's name, and instead of using the Hebrew term "Beit Cholim," a house of the sick, to introduce the name "Beit Refua," a house of healing.
Following the meeting, the Rebbe penned a letter to urge the professor to consider this name change. He provided two reasons why this name change is the right thing to do.
First, it will positively impact the patients; they will feel that they have come to seek healing and not label themselves as sick.
"Even more importantly," the Rebbe added, "this is a more fitting name for this institution since the purpose and the essence of this house are all about healing."
Today, virtually all hospitals in Israel are called "Merkaz Refui," a healing center. And the word "health" has become an integral name of hospitals names all over the world.
Welcome to Iyar, and I'm ready for the month of healing to put my cancer journey into the history books.
Countdown - 39 hours to go - surgery is May 4
Everything is moving forward with surgery on May 4 at UCSF Mission Bay. Tomorrow, I have a short visit with nuclear medicine for the injection that will show my surgeon, Dr. Laura Esserman, which lymph nodes are the "sentinel" nodes, and all lymph nodes up to that and including (I believe) need to be removed. I'm hoping not many nodes will be removed because I don't want the risk of lymphedema (which is swelling because the body cannot drain fluids effectively).
Sunday, we had the long-delayed Bye, Bye Boobies celebration. I felt I should have prepared with a t-shirt emblazoned with "troublemakers" or "double trouble" across my chest. Although my left breast really shouldn't be accused with the right. Both will be replaced on Thursday. I'm almost exactly where we were in early January, except no one is going to call me tomorrow and tell me I have cancer. Been there, done that
Being out to dinner with friends who have been incredible during this journey was fun. We laughed. We visited. We ate. Some people drank - I'm prohibited from drinking for 7 days before surgery - but that's ok!
Regarding the hospital - while I can have visitors, it's best to reach out to Neal to see if it's a good time or idea. I likely won't remember you coming by...so if you want to visit, let's look at later in May when I'm sure I'll be conscious. Pain management is a real issue with this surgery, and I plan to be both compliant and proactive. I know from my family's experiences that it's critical to stay ahead of the pain.
I feel ready. I'm nervous because the surgery is so long and complex, but I have total confidence in my team. Hopefully, I've inherited the rapid healing characteristics from my parents, and although I will definitely take it easy, I'll feel like myself sooner rather than later. And I hope I'm able to sleep and that I'm able to stand up straight sooner rather than later.
This is hopefully the final step in the treatment (other than a revision surgery in 6-12 months - but that's outpatient). It's the beginning of the rest of my life - a life without the guillotine of breast cancer or ovarian cancer hovering over me and my family. That's a perfect place to strive towards, and I'm sure I will get there. I appreciate all the love, prayers, and support coming my way - see you on the other side!
Gratitude to the Bodacious Ta-Tas
I was twelve when my body matured, and the girls (the Bodacious Ta-Tas) joined me on my journey through life. At that age, they certainly attracted some attention (mostly welcome, not all). They made gymnastics quite a bit harder (my center of gravity shifted), and when I started running track, I sincerely appreciated a high-impact sports bra! And while I had no illusions that I would ever have Rockette legs, having a T & A would serve me well (thanks A Chorus Line).
Of course, when I was 13, my mother had her first bout with breast cancer, and the Ta-Tas became a potential liability. It's impossible to go through that experience without wondering if the same destiny lies ahead of me. We didn't have any other incidence of breast or ovarian cancer in the family, and BRCA hadn't been discovered. Still, I figured if it could happen to my incredibly happy and fit mother, it could happen to me. Luckily, she survived that and the local recurrence that showed up 2.5 years later. Clearly, the girls could bite - my mom's chemo was no joke.
Life continued, and my girls filled out my prom dresses and formal dresses at Michigan. In fact, they were instrumental in holding up my wedding dress in 1998. Most importantly, when the time came for them to do their actual job, they were highly effective milk factories for all three of our children - granting them a robust immune system and allowing me to share that intimacy for each of their first years. And after three pregnancies and three years of nursing, they still had pep and were the same size. We did discover that Mom, Tracey, and I all have the BRCA 1 gene - so the Ta-Tas had an expiration date; I just wasn't sure when it was.
I'm thankful for the 40 years I've spent with them. Yes, they are double trouble, and indeed, the 9mm tumor that the right one developed was a detour I'd instead not have taken. But all told, they did good. And tomorrow, they'll be done. A pathologist will dissect them to ensure there is no cancer lurking. My currently slacking belly fat will take on the mantle of the Ta-Tas, and I expect it to do an excellent job replicating their shape, size, and feel. They won't be able to sustain baby's lives - but I'm extended past that requirement, and this is about sustaining my life for many, many years to come.
Thank you, girls...rest in peace.
Twelve hours to surgery start (730am PT). See you on the other side! Love, thanks, and hugs.