#fuckcancer

Dearest Liver,

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

Farewell My Friends

Dearest Liver,

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

Chemo Mouth

Dearest Liver,

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 Motongue_maputh” 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

Why do I only freak out at night?

Dearest Liver,

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?

I never thought I would be a blogger 

Dearest Liver,

When I was first diagnosed with cancer in 2005 everyone told me that I should make a blog. I was in a much different head space the first time around and didn’t see how it would help me. Then I was diagnosed with metastatic cancer 2 years ago and everything changed. I was struggling with a way to cope and decided to give this a try. It seemed like a good way to vent my thoughts and spare my family and friends from having to talk about my cancer all of the time. Continue reading I never thought I would be a blogger 

No more chemo for a bit!

Dearest Liver,

My latest scan showed that you are still responding to the chemo and shrinking, so after a few tears, a few meltdown emails, and some begging on my part Dr. Rugo gave me a bit of a break. My dad called it a “drug holiday” at first, which I have to admit sounds way more fun than just NOT taking drugs, but it was nice to let my body recover for a bit.

Now I have been switched over to a hormone therapy drug that consists of two HUGE shots in the butt. The shots are supposed to be monthly, but I have to get them every 2 weeks for the first 3 injections. Then they start being once a month. Tomorrow is my second shot, so I’ve made it through the first 2 weeks pretty much major side effect free. Continue reading No more chemo for a bit!

The woes of chronic illness

Dearest Liver,

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