Ok so for those of you who don’t have MBC, I realize that a lot of what I post about is probably super confusing. A lot of it is still confusing even to me. So here’s a link that explains tumor markers and the tests and what it all means:
They dropped again! When I was first diagnosed with metastatic breast cancer in my bones on Aug 5, before I began any treatment, my tumor markers were at 80.5. My first and current line of treatment is Ibrance and Anastrozole. My tumor markers since diagnosis:
- 8/5/19: 80.5
- Started Ibrance and Anastrozole in September after I had my ovaries removed so I don’t have September tumor markers
- 10/15/19: After cycle 1 of Ibrance and Anastrozole =75.7
- 11/12/19: After cycle 2 of Ibrance and Anastrozole = Are you ready?? 61.1!!!
I am so incredibly excited about this. Looks like my first line of treatment is kicking ass and then kicking more ass. I was so nervous to check MyChart when I got the notification on my phone this morning that my lab results were back but I’m so relieved now. Just gotta keep on keepin’ on and hope this trend continues. ♡
Lila is home from school today not feeling well and working on her missing assignments from her creative writing class that I’m helping her with. We keep going off track. She needed me to help her with an assignment where she has to write a fictional story about a crime. How it started, dialog, a conclusion, etc. Lila hates writing but when I was growing up this was my jam. I LOVED writing, still do always have.
So I was helping her come up with an idea and we decided on a story about shoplifting. Then I told her the story about how my cousin, sister, best friend and I all got caught shoplifting from Rite Aid when I was her age. For anyone that doesn’t know my 12 year old daughter, she’s a really good kid. Rowan, my 15 year old son calls her “The Square”. Anyway I felt like she was old enough to hear that story to draw inspiration from.
Then she got to asking me what other “bad” stuff I used to do as a middle school kid and I told her all sorts of rebellious mid to late 90s types of hijinks that people my age used to get into before technology was all over the place. I didn’t tell her anything awful, just typical innocent stuff. I told her about how we used to spend hours making prank calls, I told her how we would sneak into rated R movies, I told her how we’d tell our parents we were taking the bus to the mall but really we’d go hang out in downtown Seattle. She thought all of this was so hilarious. Then it got into me telling her how different yet similar things were. My best friend and I didn’t have TikTok when we were in middle school but I do have a bunch of VHS tapes in my basement because we had our parents’ camcorders. Same thing basically, just recording ourselves being ridiculous. I also have a lot of cassette tapes where my best friend and I would “interview” one another and pretend we were famous. Also, cassettes of us singing with her karaoke machine. I really need to find myself a VCR and a cassette player so I can share these things with her. I want her to know what her mom was like at her age. I’m so glad I kept these things.
This post doesn’t have much to do with cancer besides the fact that when you get a really scary health diagnosis and you’re a mother it really makes you slow down and make sure that you’re bonding with your kids as much as possible. I love that Lila loves hearing my middle school stories. I love it so much and I love her so much and the amazing young woman she is becoming.
Just got back from my November appointment and besides the shitty side effects and trying to figure out a pain medication that works without making me feel like I’m a zombie, everything looks great. My blood counts are still low but not low enough to be dangerous which means I can continue with the Ibrance and Anastrozole. But the best news of all?
MY TUMOR MARKERS WENT DOWN! What does that mean? For right now it means it looks like (according to blood work) the meds I’m on are working and shrinking my tumors and that is excellent news, I can’t even tell you. From Sept to Oct my markers went from 80.5 to 75.7. I’ll have November’s results in a few days. After having a couple bad days I’m now having a great one. Side effects from cancer drugs suck but as long as my tumors aren’t GROWING, I don’t care I will do anything. Also shoutout to my medical team at the cancer center. From my oncologist to my PA to my nurse, even the receptionists there. They’re all so encouraging and amazing and I’m so grateful for them.
Edit: I forgot to mention that in the past 2 months my weight has gone up to 113 from 102. Awww yeah!!
Woke up in a dark place this morning. Super anxious and sad. I’ve said it before but I’ll say it again, metastatic breast cancer comes with a lot of ups and downs. For example just yesterday besides fighting a bad cold I was feeling pretty awesome. Today is a down day, not physically but mentally and emotionally. It’ll pass.
I’m just having those feelings of why me? What the fuck? How is this even real? Is this actually just some nightmare that I’ll eventually wake up from? My oncologist thinks he can keep me alive for up to 20 years, he’s always trying to reassure me of this and honestly that would be AMAZING. 55 is fine, it’s still too young and it’s still sad but it gives me the chance to see all 3 kids grow up, maybe get married, maybe have kids (feeling very thankful I had my children young because of this). If I’m still here at 55, Rowan will be 35 (the age I am now, crazy), Lila will be 32 and Rhys will be 29. But today is a day where I’m focusing on statistics and thinking but what if I die at 38? 3 years after diagnosis is the statistic and even though I’ve always hated statistics because I am not a statistic, it scares the shit out of me. The possibility of not even seeing my 40th birthday. I’m afraid to die and I’m nowhere near ready to die but I’m more concerned for how it would effect my loved ones. Especially my children my husband and my parents. That comes with a ton of guilt which is irrational but still normal.
Anyway, that’s all…just feeling shitty today.
Since my diagnosis on Aug 5 of 2019 my mental state is so much better Don’t get me wrong, I still have really dark days sometimes where my mind goes to all these worst case scenarios and I’m too depressed to get out of bed. Recently though those feelings of mental anguish are getting few and far between which I’m thankful for. Most of my online “metasisters” all have agreed that by about 6 months you start feeling so much better emotionally than in those early months. I’m 3 months in and definitely getting there. I just wanted to share this video because this woman puts into the most perfect words of how it feels (or felt to me anyway) in those very early days after being told you are terminal when you thought you’d put cancer behind you for good. When you finally were feeling like yourself again and life was back to normal. This video is so raw and real and made me cry really hard because almost everything she says, that was one hundred percent ME in those first couple of weeks after my diagnosis only I have bone mets and didn’t have to do chemo again. Still, stage 4 is stage 4 and I never could have done what she did 2 days later (post this video) . Ugh I just remember thinking I was going to feel this way for the rest of my life and I’m so glad that wasn’t and isn’t the case. It gets easier mentally but in the very beginning? This is SPOT ON…
By the way, Nalie is still very much around almost 3 yrs after her metastatic diagnosis and doing great. She has tons of YouTube videos on life with MBC and hosts a great podcast called Thriver Talks. She also has a website and a pretty awesome IG and I think she’s written a book or two. I’d link them all but I’m lazy so google Nalie Agustin and you’ll find it all ♡
Ok I’m emotional af right now as I’m writing this (in a good way) because this morning I checked the mail and opened up a package with 2 BEAUTIFUL MBC bracelets and a hella awesome Fuck Cancer sticker from my friend since middle school, Lauren. Then I got to thinking about a care package she sent me the first time I was diagnosed. Then I started thinking about how Rand flew me out to Seattle last winter (a year ago today actually) for a Lily Allen concert. How she sent me Buffy the Vampire Slayer gifts in the mail and bought me kickass 90s style glittery jelly shoes. How Erin has sent me flowers more than once, sent me candles and took me to see Gwen Stefani in Vegas last Summer in VIP seating. How Rachel has sent me flowers multiple times and a hilarious Ted Bundy thing, how Heather has sent me multiple flowers and a personalized best friends bracelet after mine broke. How Aron has sent a super sweet fight like a girl necklace, how Sarah sent me a Buffy coloring book, etc etc etc I could go on for ages. But this never feels like pity because the people that love me were doing these things way before cancer. It makes me feel like perhaps I’m a really good friend too and that warms my heart. I love them all back more than they know.
I have a lot of close friends and I’m not saying that to brag it just is what it is, I’ve always had lots of super close friends. I can get along with just about anybody, I love people. All of my BEST friends I’ve known for 10 plus years but the majority of them I’ve known since I was a young teenager when I moved in with my dad full time in 1997. And they are all so incredibly important to me.
Sometimes I need to pause and realize that yes, I have a terminal illness and it sucks but I also have such a huge group of supportive friends and family members and a very supportive husband who gave me the greatest gifts of all, our 3 beautiful children. I got this bracelet today, yesterday I got my nails done as a gift from my aunt. My mom’s friend who I’ve never even met is offering to buy me a super expensive human hair wig for my thinning hair and I can’t even count the number of flowers and super sentimental and thoughtful gifts I’ve recieved since being diagnosed and even before. It’s in the hundreds and I don’t need gifts, that isn’t the point I’m making. I’m not a materialistic person at all but seriously my loved ones shower me with them to the point where I have stuff all over my home that reminds me how loved I am which is so heart warming when these people are all so far away.
I don’t have many people in Idaho because I grew up in Seattle and met all my friends mostly through school and then through mutual friends. I’m STILL making mutual friends through people I’ve been friends with for 20 plus years (hey CHRISTINA!) and I love it but what I wish for more than anything is that they all lived near me rather than 800 miles away. We are still working on getting our house ready to sell to make that dream a reality and move back.
I may be terminal but my life is pretty damn full when it comes to love. Today I am feeling incredibly thankful for that. Cancer has robbed me of so fucking much but it can never rob me of the love I get and the love I give.
Edit: I forgot to mention how when I was diagnosed stage 1 back in 2017 3 of my best friends, Erin, Rebecca and Martha straight up dropped everything and drove 800 miles out here from Seattle just to hang out with me and make me laugh and take my mind off all the insanity. I came back to add this because it meant so so much and I can’t believe I forgot to put it in here. ♡