December 19, 2019
Hi all! It’s been awhile since the Walk so I thought I’d pop in with another update. Survivorship is really, really hard. Especially when I STILL HAVE MOTHER EFFING CANCER...IN MY BRAIN! Let me back up and explain.
Towards the end of radiation in October, I noticed some dull headaches that were pretty regular. Right in the middle of my forehead. Nurses said it was definitely just stress and fatigue. After 6-7 weeks of these headaches not going away, I reached out and basically asked for a scan. I just didn’t feel right. They agreed to do the scan, to be precautionary. Because I still have my tissue expanders in which have magnets, they opted for a brain CT scan which I did last Monday.
The next day my oncologist Dr. Seidman called, which was the first bad sign. He said the scan showed 3 concerning spots and we needed a better look. Thankfully, Weill Cornell has a special MRI machine that would allow me to get an MRI with my expanders. So that scan was scheduled for last Friday. Didn’t think much of it. No one called me all weekend so I figured no news was good news.
I was wrong. On Monday afternoon we met with Dr. Seidman in person and he confirmed I had not 3, but FIVE small spots in my brain that were consistent with metastases, aka breast cancer that spread to my brain. Since I had a pathologically complete response to chemo, he was completely shocked. Not the vote of confidence I was looking for...
He connected me with a brain radiation specialist, Dr. Yang. We met him yesterday and he was fantastic. These spots are teeny tiny. The largest is 7mm which is less than 1/3 inch, and the smallest is 1mm which I don’t even know how you see but they did! He said these spots - or lesions - were not causing my headaches...it likely really WAS stress and fatigue. But thankfully I got a scan because I’m in a much more treatable scenario. Many people don’t realize that they have something wrong with their brain until they have a seizure or other terrible problem.
Treatment is “easy.” 4 of the spots will get one large zap of radiation each. One of the spots, which is a bit close to my optic nerve behind my eye, will get 5 smaller zaps of radiation over 5 days to be extra cautious of its location. Then I’ll get an MRI every 12 weeks or so to make sure there aren’t any new spots. And if there are, he’ll just zap them! In fact, there’s a 50% chance more spots will show up in this first year, so I guess I can’t be shocked if I have to do this a few times this coming year.
I also got a PET scan which thankfully did not show any cancer at all in the rest of my body. Celebrating that as a WIN!
So what does this all mean? Well, I’m trying not to get too bogged down with statistics or scenarios or “why me’s” because as my oncologist said, I am not textbook. I am me, in my own scenario, and we will do what needs to be done one step at a time. Am I scared? I mean, yeah. This effing blows. But I also feel confident in the plan and I know I’m at the absolute best place I can be for treatment.
How did this happen? Good question. Dr. Yang said these lesions have likely been there the entire time, even when I was initially diagnosed. They are not in distress or causing any swelling, and they are not growing rapidly, both of which are good. I never got a brain scan initially because that’s not standard unless you are symptomatic of something, and I wasn’t until the somehow unrelated stress headaches in October. While chemo did its job everywhere else in my body, the brain has a “blood brain barrier” that prevents toxins from entering. Unfortunately that means chemo doesn’t really penetrate the brain...so that is how this happened. The cancer cells went rogue and found a safe haven up there, away from chemo. Dr. Seidman is concerned, he doesn’t want this to happen again. So he’s deciding if he may put me on an oral chemo pill. Even though my PET scan was clear, the oral chemo actually does penetrate that blood brain barrier and ultimately has proven to be successful in killing microscopic cancer cells that currently might be undetectable. So if he wants me to do that, then I will. I trust him.
This is a lot to take in, I know. But I’m ok! I feel good. And I’m proud of myself for going with my gut. It hasn’t steered me wrong yet. I just left the radiation mapping procedure, where they made a mold of my head and shoulders for the radiation “mask” I will wear. It’s basically a tight mesh piece that leaves my face open but prevents me from moving at all. I’ll start treatment the day after Christmas and be done by Jan 2.
So, here we go!
January 2, 2020
Finished the brain radiation today! All in all it was pretty much a breeze. I did not ring the bell again because I feel like it was a bad omen last time. I will get another brain MRI on Feb. 24th after we come back from our Australia trip and see how everything looks in there!
New insurance deductible kicked in today, aka new authorization forms etc which alerted me to a new prescription that Dr. Seidman seems to have filled for the oral chemo pill. Assuming I'll learn more about that on Monday when we see him again but for now, bye bye brain spots!
January 20, 2020
Alright, phase 4 (I guess?) of treatment started today! I began the chemo pill - Xeloda. I’ll be on this twice a day for 7 days on, and then a 7 day break. So every other week for...... the foreseeable future. When we met with Dr. Seidman a few weeks ago, he basically said we either twiddle our thumbs for the next bad thing OR we do this preventatively. So rather than a standard 6 month prescription of Xeloda, he’s having me take it over a longer period of time as more of a maintenance drug. I’m calling it a chemo vitamin to make me feel better about it He used the word “indefinitely” but he also said if my scans are clear in 2020 we can discuss. So let’s call it a year for now!
The side effects are “minimal” - no hair loss, no menstrual cycle disruptions, nothing major. But if I do have some of the more unpleasant side effects, then they will reduce my daily dosage. Side effects could be diarrhea.... OR what is called hand foot syndrome. Not to be confused with hand foot and mouth which is for babies (or David Marzullo who got it a couple years ago HAHA), hand foot syndrome causes a burning / reddening of your palms and soles of your feet followed by potentially blisters and peeling. To combat that, I have a thick lotion called Udderly Smooth to put on as often as possible. It’s literally for cows udders..... what is life!
Refresher, Xeloda does cross the blood brain barrier so ultimately, it should help prevent new spots from showing up in my brain AND kill any tiny cancer cells that may be in my body but are undetectable.
I bought myself some comfy sneakers for Australia and am hoping that, as I did with regular chemo, I’ll fair well with this.
Thanks everyone for checking in with us over these past few crazy weeks. Between getting diagnosed with brain mets, doing radiation treatment over the holidays, having a friend unexpectedly pass away, and now starting Xeloda, 10/10 I would NOT repeat the past 4 weeks but I am grateful to this amazing group of friends and family for being there for us