creativity

Living in gratitude on my 5-year cancer journey

Me outside the Perlmutter Cancer Center in NYC on October 29th after seeing my surgeon on the 5-year anniversary of my discharge from surgery

Last week I celebrated 5 years since the bilateral mastectomy that saved my life and removed any sign of cancer from my body. My friend, Wayne, describes journeys like this as a log flume. When we begin, we’re at the top of a terrifying drop. We’re scared, nervous, unsure, hopeful, confused, anxious. All the emotions of the human condition are raw and tumbled in our minds and hearts. We’re trying to keep our head up and our eyes ahead. we don’t want to take that plunge into the unknown. But we have to. We can’t turn around. The only way out is through.

And so, we take a deep breath, and we let ourselves fall. We face all the things we were afraid of, and then some. In every health challenge journey, circumstances arise that we never expected. In my case, I had to have another surgery 3 weeks later because lymph nodes that biopsied negative came back positive in the pathology. All the nodes from that second surgery were, thankfully, negative. Then I nearly died, twice, from a life-threatening allergy to Taxol, a common chemo drug, that shut down my lungs in the middle of COVID. My oncologist at the time thought I was being overly dramatic about my side effects when in fact I was suffocating. (I fired her from my care team, and she no longer sees patients.) My pulmonology team thought my lungs might be permanently scarred and I may need to have an oxygen tank for the rest of my life. Thanks to science and diligence, I fully recovered and now I’m healthier and stronger than ever.

I spent the evening of my 5-year surgery anniversary producing and hosting NYC’s Secrets & Lies – Ghost Stories. The irony isn’t lost on me—that I nearly became a ghost myself with so much life I still wanted to live and that storytelling and creativity have been two of my greatest teachers and healers.

In the wee hours of the morning after my surgery, I woke up in recovery. High as a kite on a massive amount of drugs, my nurse ran around the hospital to find me a turkey sandwich and to this day it’s the best thing I’ve ever eaten. I happily gobbled it down, watched a Harry Potter film on my tablet, and cried enormous tears of gratitude. There was less of my body in the world, but I was still alive, still breathing, and cancer-free. My greatest wish that morning was to see the sunrise so my nurse got me out of bed and wheeled me to one of the lounge spaces in the recovery wing so I could see the sun come up over the East River and the FDR Drive. I will never forget that view.

My surgery team members came to see me before I was discharged. My plastic surgeon who had placed the first installment of my reconstruction – the tissue expanders that would go on to cause 14 months of constant pain – told me that I woke up from anesthesia very quickly, before I’d even left the operating room. I began gushing how grateful and thankful I was to the whole surgery team. She said the entire team was laughing and crying right along with me. I have zero memory of this, and I wish I’d been fully conscious to remember it. Leave it to me to bring the funny in the darkest of times!

Then my breast surgeon came to check me before discharge. Through our masks, I thanked her for saving me and she said, “Sweetie, I’m just part of the team. And every person in this hospital shows up every day with the only goal being to help you heal. And you will heal. And how you feel now – the pain and the fear – it won’t always feel this way. We’re going to get through this together.” My dear friend, Marita, picked me up from the hospital and drove me home to where my sister and my dog were waiting for me. In the following months, so many beautiful friends sent me care packages, messages, cards, and food, and came to visit me from a distance – outside and masked. The trying times we made it through! I’m so thankful for everyone who cheered me on and helped me in a million different ways. I wouldn’t be here without you.

It’s fitting that exactly 5 years at that exact time she came to see me in recovery that I had my 5-year check-up with my breast surgeon. She gave me a clean bill of health, and we talked about the next 5 years of meds. She eased my mind and soothed my heart, as she always does, with science and compassion. We have a plan to keep me cancer-free, and I feel ready to start this next chapter.

I left her office with tears in my eyes and my head, heart, and spirit filled with gratitude for every second of these past 5 years. I’m even grateful for the worst days on this journey because I got to live them. Every morning, my first thought is, “Whew, I got another one!” Long may that tradition continue.

Below are photos of me on the day of my surgery and the morning after when I woke up and saw the sunrise

creativity

New research to relieve radiation fibrosis for cancer patients

Photo by Oksana Taran on Unsplash

Some nerdy science news! Ever since my early breast cancer diagnosis in 2020, I’ve participated in a number of scientific studies and new medical treatments. Last week I began a new one after one of my doctors suggested it as a way to help support my body’s ongoing healing.

I had my bilateral mastectomy in October 2020. When the pathology was done, the research team found that lymph nodes in my left breast were positive for cancer cells even though they had biopsied negative. Additionally, I had something called “vascular invasion” on my left side. This means a few pesky breast cancer cells were trying to make their way out of my breast tissue by traveling through my blood vessels and lymphatic system. I was fortunate that my surgery removed them and brought their journey to an end before they could do any more damage. We also did a second surgery under my left arm 2 weeks after my mastectomy to test those lymph nodes. Thankfully, all of the lymph nodes under my left arm were cancer-free (just like the ones under my right arm!) However, there was a very slight possibility that one or two of those cancer cells on the left side got away without us knowing. On the off chance that this happened, my radiation oncology team suggested radiation just on the left side to ensure we stopped them. (There was no vascular invasion on my right side, so radiation on the right side wasn’t needed.) Also, there was one lymph node very close to my lung and heart on the left side that was a tiny bit enlarged. Because of its location near my heart and lung, it was too risky to biopsy or remove it. So, radiation would be used to kill any cancer cells that might be trying to hang out in that lymph node.

In total, I had 6 weeks of radiation, 5 days each week, for a total of 30 radiation sessions. The last 5 sessions were a “boost” week meaning the radiation was stepped up to a higher level and aimed right at that lymph node near my heart and lung. Though I’m grateful for these lifesaving treatments, the side effects were a bit rough. I got a 3rd degree burn the size of a baseball in the center of my chest and it caused the muscles, ligaments, and tendons on the left side to tighten up considerably. Though I’ve regained almost all of my mobility in my upper body through a lot of hard work, those muscles, ligaments, and tendons on my left side are still very tight and my left shoulder rolls in very slightly as a result. This condition is called radiation fibrosis.

All of my medical cancer care is through NYU Langone Health in New York City. They recently hired Dr. Yingrong Zhu, a physiatrist who specializes in breast cancer survivorship. A physiatrist, also known as a physical medicine and rehabilitation (PM&R) physician, is a medical doctor specializing in diagnosing and treating conditions affecting the musculoskeletal system, nervous system, and other bodily functions, with the goal of restoring function and improving quality of life.

I went to see Dr. Zhu this week and had a fantastic experience. She explained that the effects of radiation can persist for 20 years – I had no idea! – so this issues I’m having with tightness deserve attention. She also explained that because I work out and stretch every day (including stretches given to me by my physical therapy team right after my active treatment), more physical therapy wasn’t likely to help me. However, she told me about some small scientific studies that show a 6-month course of vitamin E 1000 i.u. supplements combined with a medication called pentoxifylline ER can help release tension in muscles affected by radiation fibrosis and lead to increased mobility.

Together, Dr. Zhu and I decided it was worth me trying this new medication combo. The side effects are minimal, and she’s had a few other patients who have benefitted from it. It’s too soon to tell if it will help me, but I’m always willing to try anything that helps support my health and well-being. I also see this as an opportunity to not only help myself, but also to help others by sharing my experience with this new treatment. I’m excited about the possibility of regaining more of my mobility and improving my quality of life. Here’s hoping that someday I’ll be able to do my beloved yoga backbends again!