On March 11, after three years of hip pain that progressed to being unbearable
I was diagnosed with metastatic breast cancer. My left hip/pelvis, lumbar spine, and sacrum, plus a small spot on one lung, are affected. My initial breast cancer diagnosis in August 2006 showed that I was ER/PR+ and HER2-, stage IIIa. I received a right radical mastectomy at that time.
It’s been just over two weeks since I received the metastatic news, and I’m still in shock. Metastatic means that the original cancer has spread to other parts of the body but is still breast cancer and will be treated as such. I shared my news with both of my children, my brother, closest friends, my supervisor at work, and our company’s president. I had just recently lost both of my parents to different Stage IV cancers. I was given the choice of crutches or a walker immediately. I would be at serious risk of a hip fracture if I didn’t choose one, and that was the only thought that took hold for me right away. The rest felt like a loud noise in the background, which I didn’t want to hear but had no way of stopping.
Suddenly, I was unable to do many things because of the need for crutches.
I couldn’t carry anything that wasn’t in a bag or a backpack. But I can work, and I can drive since my right leg is unaffected. I am extremely slow at using stairs and at walking because of the pain, but with appropriate pain meds, it’s a little easier. The words “impending fracture” are tattooed inside my mind in large flashing letters. Thankfully, I can still go to work and have that part of my day feel mostly normal. The incredible owners of the company, my wonderful supervisor, and my coworkers all treat me with care and great concern while also treating me normally, which means the world.
These first two weeks have been intense
filled with nearly a week of hospitalization for tests and another week of seeing specialists. It was the bone biopsy that confirmed the diagnosis. First, a radiation oncology treatment plan for my crushed left hip will begin when the doctor has determined my prescription. Radiation will be administered daily for 10 days. My left hip is almost entire filled with cancer, full of holes, and was being crushed when I walked. As the dread in me begins to rise, I push it back. I promise myself that I will remain positive and hopeful and continue with doctors who share that view. The first oncologist to be consulted didn’t make the cut.
I feel guilty about burdening my kids with this again. They are strong, but they had to do this with me once already when they were 10 and 6. I was 40. I find myself apologizing to everyone I tell. It feels too heavy to give to anyone. From somewhere, I will summon the strength to do this. Right away, I received radiation to my left hip. I had been in serious pain for nearly 4 years; walking, trying to sleep on that side, standing from a sitting position, and much more were all incredibly painful. Finally, my physical therapist was out of ideas to try to heal me and referred me to a hip specialist.
After a long week of testing after seeing the hip specialist, I was diagnosed with the spread of my breast cancer. Just looking at the x-rays of how disfigured my left hip had become with bone metastasis progression was shocking. Next, I would receive radiation to the lumbar spine and sacrum as metastasis progressed there, causing increased pain. I was also put on long-term MBC (metastatic breast cancer) oral medications that work like chemotherapy and a hormone suppression drug. The first drug caused an allergic reaction. The second was discontinued after hearing the subsequent news.
At an unplanned exam with my gynecologist, black patches were discovered around my rectal area. Initially, they were diagnosed as melanoma in situ, which means they thought it hadn’t spread. I was referred to a melanoma specialist in oncology. She ultimately ordered an internal biopsy of a node on my adrenal gland, sparing me a terrible rectal surgery. I was then diagnosed with brain metastasis in Feb 2023. I received immediate SRS (focused) radiation treatments, sparing me from any brain surgery. I am left-handed and have been rapidly losing motor skill functions and general control abilities on my left side.
The radiation treatments reversed the effects of the brain tumors almost immediately, and then there was no need for surgery to remove the largest one. It wasn’t known yet that the brain mets were probably melanoma. The heads of Melanoma Oncology, Neurosurgery, Radiation Oncology, and Neuro Oncology at Shadyside Hospital and their amazing staffs have created a rockstar team that has given me continuous support, making me feel like I’m their only patient, and providing thoughtful, focused treatments and care. I can’t imagine being anywhere else. Immunotherapy treatment started in May. Dr. Yana Najjar, my melanoma oncologist, recommended this treatment because it’s the most successful (55%), though it’s also the most toxic, and often derailed quickly due to serious side effects. I am fortunate to have made it through three of these treatments before developing pneumonitis in my lungs.
I feel incredibly lucky to have connected with Jennifer Kehm and the Young Women’s Breast Cancer Awareness Foundation, who have supported me in countless ways. Jen and I met more than 10 years ago speaking at a luncheon for Pitt Pharmacy students. She is a treasured friend and a pillar of strength and compassion, always checking in and being a true friend to so many women.
And I cannot forget the Pittsburgh Hearts of Steel Dragonboat Team. I joined them to learn dragon boat paddling in 2021 and to eventually race with the team. These amazing, supportive breast cancer survivors who lift others and have built a wonderful team have also supported me, becoming an extended family.
I just had my final of four immunotherapy treatments last week, September 2023
Side effects from the brain lesions and subsequent swelling have thrown me off course, which goes hand in hand with high daily doses of the steroid dexamethasone. Yet it’s the only thing that resolves my severe nausea and terrible migraine headaches. The brain radiation side effects prevent me from driving and leave me with pretty constant dizziness, but it is working to shrink them and that is a definite win. I also spent 10 years raising awareness for young breast cancer survivors (and raising money) who were diagnosed in their 20s, 30s, and 40s, as I was. I had the honor and privilege to serve as the Race Chair for the 2013 Komen Pittsburgh Race for the Cure. It was an amazing year full of meeting new people and sharing my story and that of Susan G. Komen.
I have learned this week that I will continue to receive Opdivo infusions once every month. It is the milder drug in my immunotherapy regimen. That will continue for 2 years. The physician’s assistant informed me that it is standard in the treatment of metastatic melanoma. Currently, even though I’m uncertain about the next treatments, I’m trying hard to listen to my body and brain and take it all one step at a time, celebrating every milestone and win.