Soon after experiencing headaches and other symptoms, I spoke up to my oncologist — and I’m glad I did.
After five and a half years with my stage 4 breast cancer in my bones, I’ve learned when to speak up when something isn’t right. This can be when I have questions, felt something was missed or not covered during an appointment, wishing to discuss something, following up on something that was talked about, or even a test result.
Most recently, I started having headaches that were unlike any other kind of headache I’d had before. These were constant, very painful, dull ache and hard to sleep with. After almost two weeks of them, and no medication helping, I communicated my pain to my oncologist, and asked for a brain MRI.
Thankfully, my oncologist put the brain MRI request in stat, and we got it scheduled pretty quickly. After a grueling hour in a loud tube, the brain MRI was over, and I just had to wait for my results. The following day I was at my radiation oncologist appointment to follow-up, and my brain MRI results were in. Luckily, he was able to read them with me, and go over the results. I had two lesions in my brain that had cancer, and there was the potential for leptomeninges or pachymeningitis. Due to the fact I was with my radiation oncologist, he could act swiftly, talk to my care team, order additional testing, and get the ball rolling.
I was so grateful that I had spoken up for my brain, and that I had this amazing care team.
At the same time of all of this, for several weeks, I kept having issues with my gallbladder, and heartburn, so I finally asking for an ultrasound of my gastrointestinal system to see if we could get anymore details. My GI doctor ordered one, and it came back with spots on my liver that looked like cancer, which prompted the need for an MRI. A liver MRI was ordered, and sure enough, the same spots on my liver lit up. I now have two spots on my liver that will need to be biopsied.
With progression between my brain and liver, I began on weekly chemo because I ran out of options that were oral medications. Every medication that was an oral option had failed me — Ibrance (palbociclib), Kisqali (ribociclib), Xeloda (capecitabine) and Orserdu (elacestrant) had all not worked for me, or stopped working for me. We even tried Enhertu (trastuzumab deruxtecan), which is a targeted chemotherapy, but I am in the 10% of patients that get a rare side effect that develop a lung disease like pneumonia.
After a few rounds of my gemcitabine/carboplatin chemo, I started to develop vision issues in my right eye (not as a side effect from chemo), but rather as another issue altogether. I saw squiggles, blurry lines, had no peripheral vision in the lower half of my eye, and had a shadow (curtain) in my right side. After seeing the eye doctor, he saw a blob on my retina, and sent me to an ocular oncologist. With some panic and anxiety, I underwent more scans of my eye, and pressed on. This doctor determined I had two ocular secondary tumors in my right eye from my metastatic breast cancer advancing to my skull and now my eyes. Horrified and surprised, I was speechless, but it made sense for my vision issues.
I begin this upcoming week three rounds of gamma knife brain radiation to my two brain lesions. While I am nervous and anxious for brain radiation, I am beyond excited to get rid of my headaches. I’ve stopped driving between the brain side effects, and now the vision issues. It was an easy decision because safety first, and I have to take care of myself, and not harm anyone else.
I am still processing the fact that I have six tumors in three organs of my body; it’s a lot to take in, and I don’t know how sane people process this news. The days and nights just pass quickly with all of my doctors’ appointments, and I take them in great stride, just allowing myself to take it one day at a time. Thankfully, I have a great medical team, support system and I can work from home. Beyond all of that, I am eternally grateful for every day I am alive, and for advocating for myself. Had I not done such, my six tumors may not have been found. It gives me such hope that I still fight so hard for this body and don’t give up. Deep down, it’s why I continue to share with all of you, and why I continue to advocate for others. All of our bodies are important, and our stories, too — how we discover the truths of our medical issues, and find out information can lead to important lessons.
While hard news may still take time to process, it is still absolutely important to always speak up, fight for our symptoms, and always keep the hope & faith that what we are doing is the right thing.
Happy Holidays & Happy New Year
With love, grit, grace & gratitude from Team Sunshine
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