In my previous post, Radiation Planning, I discussed the process of radiation planning and the particular radiation treatment that I received. Radiation therapy was an integral part of my treatment plan. I view it as “carpet bombing,” basically making sure all the cancer cells are eliminated from my body. Radiation treatment for me was much easier than my initial chemotherapy treatments.
Lucky Friday is here!
On “lucky” Friday, May 13th, I finally completed the scheduled 25 rounds of radiation, which I had every weekday for 5 weeks. That signified the completion of my “active” treatment phase and I am now reported as “no evidence of disease” or NED. I admit I’m generally reluctant to make that announcement since the term “cure” isn’t used and I know I will be monitored for the rest of my life. I am currently not in a place where I am ready to use that term for myself and I feel like I am still in what I think of as ongoing treatment.
No Evidence of Disease 👍🏻👏🏻
There is no tangible or definitive evidence to prove that cancer isn’t floating somewhere in my body. I have fought cancer since July 2, 2022 and it feels like I am still fighting. It’s hard for me to turn off that switch in my brain, but perhaps I am now in a different phase. I know it will take time and adjustment for me to learn what my new life will look like. My body has forever changed, whether it’s the scars I wear proudly, chemically induced menopause (and all its great side effects), or the temporary “tupperwear ta-tas” I have until reconstruction. I still receive Kadcyla chemo infusions every 3 weeks along with hormone therapy. I feel that as long as I am in ongoing treatment, I am fighting cancer. My life has been on hold and forever changed, but I hope that with time, I will be more confident in the future.
My Phenomenal Medical Team
Until a cure is found, the best outcome a breast cancer patient can achieve is to be assessed as “No Evidence of Disease”, thus the acronym NED. I acknowledge that achievement to pay tribute to the tremendous care and attention I’ve received from all of my doctors and their team members at UCSF. In particular, I want to thank my team of 5 doctors and all of their wonderful staff members:
- Dr. Mitchell Rosen, Fertility Preservation
- Dr. Cheryl Ewing, Surgical Oncology
- Dr. Amy Jo Chien, Medical Oncology,
- Dr. Merisa Louise Piper, Plastic Surgeon
- Dr. Nicholas Demetrius Prionas, Radiation Oncology.
Project Pink Wheels
For my last treatment, I was shocked that morning when I opened the door to 2 firefighters from Project Pink Wheels and their beautiful pink firetruck. It’s a converted fire truck painted bright pink, which my Dad secretly arranged, and which drove me to and from my last radiation treatment.
Project Pink Wheels was launched by Chris Leimpeter, a Fire Captain in Contra Costa County after his wife was diagnosed with breast cancer. The truck is used to escort cancer patients of all types to their first or final treatment. The truck is also viewed as a rolling memorial as each patient, and family members of past cancer fighters, can sign the fire truck. You can find them on Instagram and Facebook under “Project Pink Wheels”, where you’ll see pictures they took on that day; I’ve attached a few of them here. There is also a page on my website to learn more about Project Pink Wheels.
More Surprises
When I got to the hospital, I was surprised by my amazing friend, Erica, who flew in from Portland to be a part of my final treatment, another surprise arranged by my parents. When I finished, I was able to “ring the bell,” a classic San Francisco trolley car bell which the radiation oncology team has installed for patients to signify the end of radiation therapy.
My parents, Erica and the radiation team all helped to celebrate the special day. My radiation oncologist and his team loved the firetruck and also came outside to take pictures.
Even More Surprises
Erica and I got to ride in style back to my house where my parents had planned a neighborhood celebration with friends and family. I was shocked and so thankful to all who were able to attend; there were many faces I haven’t seen in years! Thank you to all who were able to come out and celebrate. I’d also like to offer a special thank you to Jannine & Jose Quintero and Robyn Taylor who worked with my parents to make this such a wonderful “surprise” celebration. I am so thankful to have such special friends and family in my life. The celebration was a great taste of normalcy in life since my diagnosis. Unfortunately, my freedom was short-lived.
One More Surprise - but Not a Good One
During my follow-up appointment the following Tuesday, a normal check-in following the end of radiation, I had significant skin irritation and inflammation following radiation, which made my team concerned and unwilling to take the risk of infection. They admitted me to the hospital that night. After 5 COVID tests, 3 attempts to get an IV, several IV antibiotics running day and night, ultrasounds and CT scans, the team was still unclear if I had an infection because of the difficulty of diagnosing an infection with the presence of expanders, chemo medications and radiation, but my doctors wanted to be extra cautious.
I was in the hospital for almost a week while receiving IV antibiotics and a few related medications to attack the potential infection. While it remains unclear whether I had an infection, I can’t complain because I would rather have my team be extra cautious. Over the preceding 3 weeks, I had weekly check-ins with my team and finished another course of oral antibiotics.
The next day, I met with my plastics surgeon, Dr. Piper, who is happy with my recovery and thinks that if there was an infection, it’s gone, but only time will tell. On Wednesday, June 8, I resumed Kadcyla, the maintenance chemo infusion, which I will have every three weeks for most of the rest of 2022. For now, with fingers crossed, that’s the only remaining procedure I’ll undergo before reconstruction surgery.
The New Normal
At that time, I was still struggling with finding normalcy and coming to terms with the completion of active treatment. It’s comforting to see my doctors so often and being under constant monitoring, as I don’t have to think about recurrence and what signs I need to monitor on my own. I have dealt with my diagnosis as a large checklist, focusing on one thing at a time.
People often say that adapting to life after active treatment is more challenging than treatment, and I completely understand that. I am adapting and learning what my next steps in the midst of recovery.
I apologize for the delay in sharing this particularly long update. I am writing these blog posts in chronological order according to the steps and stops on my journey. While I recently had my reconstruction surgery, the lingering fatigue has kept me from getting to this post as soon I wanted.
The support of my family and friends has been appreciated more than I can say and have uplifted my spirits and shown that this is not a journey you take alone. Thank you for all of the continuing love and support.
