A lady who was very active in my MBC support group passed away. The obit was posted in the group this morning. I had suspected it, since she hasn’t been active for several weeks now, but it is extremely sad having it confirmed.
I get annoyed at people in my MBC group when they post something like. “I’ve been on my first line of treatment for 7 years. Don’t give up hope!” Yes, that’s great for you, but that is NOT the norm, and it feels like some sort of fucked up bragging. I know it isn’t, but it hits badly.
I’m on my third line of treatment at a year and nine months in. I’m just really jealous.
I’m super frustrated. I wrote a long ass post and it just •poof• disappeared. Fuck. I’ll try to recreate the gist.
I have spent most of the last 24 hours sleeping, and that is no exaggeration. Bone pain and a migraine knocked me on my ass. So much so that I even missed dinner with the fam. Sigh. I’m concerned that there will be more and more days like this in my future.
I finally heard from my oncologist last night around 630. I need to remember that she always calls after hours. Anyway – there is some good news to share. She thinks the spinal lesions shown on the MRI are basically bone “scars” that show where breast cancer was, but that cancer is now dead, which is why the mark shows up on the MRI but not on bone or PET scans. (She said it is like when someone breaks their arm: the bone heals, but there will always be a mark visible on imaging). We will be doing some more imaging to confirm, but my treatment is remaining the same for now.
I told her I disliked the bone surgeon a great deal, and she seemed to have her own issues with him. He hasn’t talked to her at all about my case. He published the results of the MRI to my online chart and had his nurse call me to tell me the spinal tumor board decided I have breast cancer in my spine and should get radiation. So obvi I freaked. This was the gist of the MRI report I read:
After hearing my oncologist’s explanation, I’m feeling much better about things. I believe the treatment is working. She told me he’s not a cancer specialist so not to freak. But we’re both wondering why he didn’t actually talk to either of us about the non-cancerous tumor that sent me to him in the first place.
Ugh I’m so fucking sick of doctors. (No offense, Nick. Lol. Love you, bro!!)
In other news:
My kitties cuddled up with me the entire day. Sweet Sansa does this adorable thing – when I get up to use the bathroom, she walks me to the door, waits for me, “asks” me for pets, and then walks me back to bed for more cuddles. My heart!! We are currently cuddling and it’s delightful.
It’s 4:44 am currently. My headache is now a dull throbbing, which is a big improvement. I’m getting up at 7 to take Jackson to school, and then heading to Siteman for a brain MRI. I requested this imaging because of all the headaches. I feel like we need a baseline image of my brain. We’ve never scanned it.
Please send good vibes.
I’m looking forward to the weekend. We will have the kids, and I want to hunker down and do all the family things. I really hope I’m feeling better by then.
If I’ve been ignoring your texts etc – please forgive me. I’m a fucking mess right now, and in too much pain to do much more than sleep. Even walking to the bathroom is difficult.
MRI showed lots of mets in spine. Waiting on more info.
Woke up around 3 am really sick and in a lot of pain. Vomiting. Feeling like someone was stabbing me in the eye and stomach. It’s now 12 hours later, and I’m still in bed, making small improvements. D is alarmed. I can tell he wants me to go to the ER, but I am not about that life.