Tag: chemo

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#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. Read more

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. Read more

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. Read more

Bucket List

Dearest Liver,

Clearly my meltdown tonight is driving me to write two posts. This one I intend to update and hopefully check somethings off of. Maybe I’ll even make it a new section.

I’ve never officially had a bucket list, but why not start one right? I’m not really sure how to break this down, so let me know if I should organize it better. None of these are in any order of importance… Read more

how do you face it?

Dearest Liver,

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. Read more

I want to do all the things!

Dearest Liver,

I’m so sorry for the break in blogging. It’s a little funny that my last post on here was about being a newly enthusiastic blogger and then I stopped blogging for a while. I started a few posts, but never quite finished them.

I have been taking the new drugs for a few months now and I started to feel like a real person again in April. It is amazing and I found myself wanting to do all the things that people asked me to do. Not to say that I was going super crazy, but after feeling sick non-stop for 6 months, I was all about dinner with friends and birthday celebrations and anything else that sounded fun. I even went to Mexico and it was amazing!! Read more

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. Read more

Break

Dearest Liver,

I was given a small break from my chemo last week. Despite my two neupogen shots, my blood counts were too low for chemo. I also suspect that the addition of the neuropathy helped my case for a break. I have been feeling like I never fully bounce back lately as well. The exhaustion is overwhelming. Granted I probably don’t sleep enough hours, but having to be at work at 7:30 am doesn’t make it easy.

Instead of chemo I had my 3 cycle CT and found out that the tumor in you was a little smaller again! Not the 50% decrease that I had the last time, but still, smaller is smaller! Now I’m waiting to see what my doc wants to do next time. I’m being tested for a new study and there are some other options on the table. I have a feeling I’ll be back on chemo for a little bit next week, but at least I got a tiny break. Read more

Skele-gro or what my doctors call Neupogen

Dearest Liver,

You’ve probably noticed me complaining about my Neupogen shots (or Skele-gro as I like to think of it), but I don’t know if I’ve ever explained it. The chemotherapy treatments that I get have the known side effect of lowering white blood counts. White blood cells are what help fight off infections in your body, and neutrophils, a type of white blood cells, fight infection by destroying harmful bacteria in the body. When your neutrophils get too low, your chances of getting an infection become a lot higher. If they become too low you can even be at risk for an infection from eating fresh fruit or veggies or from even being around fresh cut flowers.

In order to try and avoid all of that mess and to make sure that my neutrophils are high enough for my next treatment, I get shots of Neupogen. Neupogen is used to stimulate the growth of bone marrow, the place where your white blood cells and neutrophils are made. This hurts like hell. Bones that I didn’t even know existed in me start to hurt. Hence my name for it: Skele-gro. Read more

Finally, things are going in the right direction!

Dearest Liver,

The last two treatments haven’t been so bad to me, so I wanted to share these good results with you! Your functions have all been in a normal range for 2 treatments in a row now. My doctor and nurse practitioners are all very excited about your progress and I find it easier to put up with feeling sort of sick when I can see good results! It’s only 2 days post chemo and it’s way past my bedtime, so I’m going to keep this short and just share my results in the charts that MyChart provides me! Read more