Just when you think everything is hunky dory you land your butt in a hospital bed.
Ok, I didn’t think everything was hunky dory. I had been as sick as a dog from this crazy Tykerb stuff and found out why you can’t have diarrhea for weeks on end… I had already questioned how much longer I could handle it… I learned that when you have this much diarrhea, you lose important nutrients. Ones like say… Potassium. Apparently you heart likes potassium to run efficiently and when you stop in and get labs and they find out it is 2.3 they kind of throw a huge crazy fit and something about your heart stopping. Important things it would seem…
There was a headache at the hospital on how to give me potassium, some missteps, my mom in tears and eventually I landed in a comfy hospital bed with a drip going, my heart being monitored and me passed the heck out. Too tired to talk to anyone and certainly too tired to update my breast cancer blog.
I slept for about 24 hours straight while they tried to get me back to normal on all things blood tests look for. I wasn’t able to do my PET-CT Monday because I was apparently half dead, so they moved that to Wednesday when I was more alive looking (thus more fun to force starve for a day again). They moved back my oncology appointment to Thursday and I just absorbed nutrients, tried to eat normal food (my hospital gives you a menu that you get to order room service off of and I love their smoothies), and just had to keep pooping in a hat (which I called a cup, I don’t know what these things are!). They wouldn’t give me anything to slow it down (immodium) because they waited over 24 hours for a Cdiff test to come back. It finally came back negative and they started to give me meds, but they are taking their sweet time to start working. Luckily there aren’t hats to poop in at my house, just toilets. As much as you all want to read about my toilet habits, you would be shocked to find out us cancer people are pretty obsessed with our pooping because every dang drug does something to it.
I got my PET-CT scan and got a late call from my oncologist, which usually isn’t great. She didn’t have good news either. She had already sent that my tumor markers had increased, a lot. They had jumped from 95 to 158. So we knew cancer was probably acting up somewhere… but hoping it was not. My tumor markers usually match my scans though.
So… the cancer made it to my liver now. It is back in a lot of places it already was, and now my liver too. My brain MRI is next week to see how my brain is doing after everything. The tumors weren’t obvious on my PET-CT like last time. Could be a good thing? Could be I have 40 little buggers up there. Who knows.
I don’t even know what to say. I feel like I have been slapped in the face for trying to attack my brain tumors. Go for one thing and the cancer is like, NOPE, checkmate, I have got your liver. F*** you.
Not to mention Tykerb is now on the “Mandi can’t have this medication list.” I didn’t call my doctor when I should have, my body won’t take the medication without trying to kill me, and so now I am just… sad.
My hospital also won’t pair low dose Tykerb with Herceptin. They follow national guidelines that say “nope, creativity be damned, we like tried and true sh**” the end. Apparently the combo doesn’t have enough evidence to win itself the Nobel prize, or the way into my veins unless I find some street Oncologist willing to bend a few rules (because obviously they would have to take it to the streets because I think I am thuggish ruggish or something).
They can’t give me any HER2+ medications anyway because outside of my little potassium mishap, my heart is in heart failure zone, so goodbye HER2+ meds until my heart heals. Which it is supposed to… They say. I am also tired of them trying to do an echo around my implants, the techs complain and it hurts. One of those things you don’t plan for when you get new “boobs.”
I had hope to enroll in an Immunology trial that will take you even if you have brain mets, but I guess I won the prize on too many of those to get into that. Plus they frown upon a heart that isn’t working so good. I got the paperwork, but the enrolling nurse already tisk tisked me.
So… tears. Gnashing of teeth. Pillows thrown against walls and more tears.
I win. I have BINGO. I have cancer in my brain, lungs, liver and bones. No one is handing out prizes and all of those studies that they complain they can’t get enough people to enroll, all turn a cold shoulder to me. I am breast cancer trash, dying too soon to be worth a test. Which leaves me with one option.
The kind that makes your hair fall out on your pillow. The kind that makes getting out of bed hard in the morning. The kind that makes you lose the ability to feel your toes. The kind that erases your memories and makes you think slow. The kind that requires you to take energy meds. The kind that makes it so everyone in the world knows that you do… in fact… have cancer.
People will ask me when will I be done? The answer is never. Treatment never ends when you have stage IV breast cancer. Some win and can beat it back, but since November cancer has been giving me a royal wallop that I keep falling down and am not sure if I can keep standing back up.
After a long talk of who knows what the heck to do, my oncologist wanted to go back to Taxotere. It worked miracles last year, maybe it will again. This time without Herceptin and Perjeta to nudge it along.
The question posed was:
Do I want to see the cancer shrink? Do I want to have a good quality of life? or am I ready to throw in the cancer towel, hang up my hat and join the land of hospice.
Today I want the cancer to shrink. I want it to go away.
Fuck you cancer.