This is going to be a new series too, chronicaling my experience with metastic breast cancer. Yes, what I had feared when I wrote about it in October 2015 came true. Monday is #metsmonday on social media, so Monday will be my cancer blogging days.
When you have Stage 0-3 breast cancer, even a highly aggressive kind like mine, follow up scans after treatment are generally not done. Scans are only done if there are symptoms or funky bloodwork. The reasoning is that metastatic spread has the same life expectancy if it is found through symptoms rather than scans.
For the most part, I was OK with not getting scanned. The one exception was my brain. The highly aggressive protein (her2) which drives my cancer made me much more likely than the average breast cancer patient to get brain metastasis. As I did not want to risk having a seizure while driving or wake up with part of my memory gone. I asked about routine brain scans and was told the whole not without symptoms spiel. I thought about alternative – second opinions or even faking some bad headaches once a year – but then something happened. I started to move on from Cancerland. And I didn’t want to go back.
I finished nine months of an early stage clinical trial back in June 2015 but it was also an end to nearly a year and a half of active treatment. The great European/Moroccan adventure over that summer (which I will get back to writing about!) was a bit of a reset that dragged me away from cancer and got me refocused on living life again. And in September, my oncologist released me from follow ups for the next six months.
Fall 2015 was pretty awesome in a lot of ways.
Younes and I settled into our first grown up apartment together.
I started an awesome new job where I got to work with kids every day.
Younes refurbished a used bicycle for me and I took up cycling.
I swam a 5K open water race at beautiful Siesta Key beach.
Younes and I celebrating my successful 5k swim with cocktails and dancing
Younes and I went on one of our “bucket list” trips – camping on a remote island, which I will write about soon.
And, on the grimmer side, my elderly grandmother, my last remaining grandparent, was in her final decline.
So, as you can see, I had a lot going on in my life besides cancer.
But something was brewing in the background. Something bigger than my worries of metastatic disease that had haunted me since this whole mess began.
The day I found out about getting my job, and two days before my swim, Younes and I were running some errands when I started to see a wavy line in the very bottom of my left line of vision. I continued to see it for about 15 minutes and then it went away. We hopped into the car, and as Younes drove, I looked it up on Dr Google. One of the first hits I got was “ocular migraine.” I am prone to migraines and have been long before my cancer diagnosis, but they have never manifested in ocular symptoms before. But, I reasoned as I lept into the river of DeNial, since I was on estrogen suppression to keep the cancer away, it would make sense for my pattern of migraines to change. The wavy line didn’t return, I pushed it it the back of my mind.
Two days before our island camping trip, right after we finished dinner, I started feeling an intense tingling that moved up my left arm. It continued for about five minutes, and then went away – leaving me baffled as to what happened. I knew I should get in touch with my oncologist, but we had waited 18 months for this trip and I didn’t want to mess it up. We went camping, and had a wonderful, symptomless time. The tingling happened a few times more, but it was brief and sporadic, and in DeNial, I told myself it was lymphedema, a side effect of the 17 lymph nodes I had had removed from under my arm in July 2014. I was also having real symptoms of lymphedema, so it was an easy conclusion.
Mid-December, I had tingling in my arm, but that time it resulted in shoulder spasms. I was freaked out, and this time I looked up my symptoms on Dr Google and I realized I might be having localized seizures. But Younes and I were about to visit my grandma and then get a Christmas tree. I didn’t want to miss seeing my grandma, as I always worried it would be the last time. I didn’t want to screw up my family’s Christmas like I had two years ago (I was originally diagnosed December 23rd, 2013). I didn’t want to take off work the week before Christmas vacation and be seen as a slacker. I decided not to do anything until after the holidays.
A few days later, I was at work, surrounded by hyperactive 3rd graders, and I started seeing flashing lights out of my left eye. My first thought was “I have to hold it together long enough to help this little girl with her handwriting, even though I know in my gut I have a brain tumor.” After class was dismissed, I was determined to go to the hospital – screw Christmas – but there was no one to take me. Younes was working as a mover at that time and unavailable. My co-worker was in the office instead of on-site that day. None of the people at the school knew my medical history. So I locked myself into a bathroom, curled into fetal position on the floor, and cried and hyperventilated. After a few minutes, I figured that if I was stuck at the school, I might as well finish the workday. 20 minutes later, all symptoms had vanished. By the time Younes picked me up, I felt fine. I got into the car, described what had happened and asked if he thought I should go to the hospital. He said it was probably a bad migraine. I texted my mom and a friend, and they said the same thing. Even Dr Google said it was a symptom of ocular migraines. I knew deep down it was brain metastasis, but I really wanted to be wrong…
TBC next #metsmonday.