As per usual it seems, you managed to throw anther wrench in my life. I was pulled from the immunotherapy study shortly after my last post and put back on IV chemo. Per my request, it’s the same IV chemo that I was on the last time. It’s supposed to give me less neuropathy than the taxol based drugs and also wasn’t supposed to make my hair fall out. Of course I have more neuropathy than before and of course my hair fell out… Although I sort of think that has more to do with the drugs that went with the immunotherapy than this chemo. (I promise to add blog posts about both topics soon.)
The hardest part of this whole situation is that I learned that I’ve pretty much run out of standard of care drugs. There are a few more IV chemo options (the taxol based ones I’m trying to avoid of course), but besides that I’ve tried everything that currently exists. I’m not really sure how many options I thought were out there, but every other time a drug stopped working my doctor spoke of back up plans. This time when I asked what happens when the drugs stop working, as they always do, she spoke to me about dying. About how my liver would stop functioning and one day I would just go to sleep and never wake up. Continue reading #fuckcancer
The last couple of weeks have been really hard on me. I had my first scan from the new clinical trial I’m on, an immunotherapy drug, and it didn’t go so well. I knew it was a likely outcome since this drug is known to take a while to work, but it still sent me into a tailspin.
Then I found out the next day that my beloved port-a-cath needed to be removed because the hole in the skin that had been ignored as just a spot of thin skin for 9 months was actually a hole where my port was exposed. I has surgery the following day to remove it, have to wait for it to heal completely, and then will have surgery to put in my third port. Continue reading Farewell My Friends
Sorry for the 2 post meltdown and then radio silence. I lucked out this time and my doc found me a new trial to go on. I’m taking 2 oral drugs, Tamoxifen (again) and Vorinostat, and I get an infusion of an immunotherapy drug every 3 weeks.
So far, so good. I actually feel fairly normal on this drug and there are only minor side effects. My platelets are low so my legs look like I’ve been in some sort of crazy fight and there’s maybe a little fatigue, but it’s hard to tell with the number of hours I’ve been working recently.
The worst side effect from these drugs so far is my messed up taste buds or “Chemo Mouth” as some people call it. A few weeks ago I was having the problem that everything I ate tasted like metal and now everything tastes like salt. EVERYTHING! Sweet things are actually sort of worse than foods that should have salt in them. It’s to the point that I don’t even want to eat b/c everything tastes so nasty, but I know that I have to. Continue reading Chemo Mouth
Sorry that I’ve been away so long. For a while I was feeling well and I didn’t want to take time away from that to sit down and write. I was having fun with my friends, dancing whenever possible, and finally traveling and doing things I wanted to do. It was amazing, and even though I KNEW that it wasn’t going to last, I couldn’t comprehend how horrible it was going to feel when that was pulled away from me again.
I tried to prep myself for it, thinking that if I lived it up and enjoyed all of the moments I had, when I was torn down back into my fucked up reality of metastatic cancer it wouldn’t be so bad. Like somehow I would be able to weather the storm of the next rough patch by reliving the nice parts of my chemo break in my head. Continue reading how do you face it?
I can’t figure out if this is just me, or if others are like this, but I feel like I always have my cancer freak outs at night. The annoying time when it’s too late to call my friends or my dad and I’m stuck thinking the absolute worst thoughts until the morning.
Tonight I was lying in bed trying to fall asleep (a task thay has been harder and harder recently) and I felt a weird pain in my sternum. As I touched the area I felt a bump that I am now convinced is a new met. It might be just the way that area has always felt, or maybe I’m just noticing it b/c I am having a hard time keeping on weight and I can feel my bones more. Continue reading Why do I only freak out at night?
Chronic illness is the thing that I struggle with the most in my current situation. It’s the thing that makes me feel alone and sad and tends to trigger most of my recent meltdowns. It’s also something no one will ever fully understand unless they have the misfortune of having it, so I thought I could try and explain it to you.
When I was first diagnosed with metastatic cancer, I felt lucky to have such an amazing support system of family and friends. It was really hard to process the idea of having incurable cancer. I was just about to turn 30 and the thought of being “that cancer girl” for the rest of my life horrified me. My friends made jokes with me and told me that I was stupid for thinking that no one would ever love me or want to be with me because I have cancer. They were a shoulder to cry on and would take me out drinking and dancing whenever I needed a break from reality. Continue reading The woes of chronic illness
I have a few topics that I’ve been wanting to discuss with you, but today I read an article about an org called P.Ink (http://p-ink.org/) that inspired me to talk about my tattoos as a weird/unconventional mental healing method.
P.Ink helps breast cancer survivors find tattoo artists and encourages them to take back control of their scars and bodies. Most of the women in the article seemed to be tattooing over mastectomy scars or getting something creative tattooed instead of the “traditional” fake nipples. I really like the concept and mission of the org. Continue reading Healing the unconventional way