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Dearest Liver

Sorry for the long break in the posting . Things in my world have been a little complicated. I have, however, been able to raise over $2600 in my tee shirt campaign which supports Dr. Rugo’s research fund.

On October 16, 2016 I got married. I made most of the paper flowers that we used for the wedding. The wedding was the best day of my life! I definitely married the best person in the world. A few days after the wedding, I had a procedure on my liver called TACE where the blood supply  to a small part of the liver is blocked with chemo therapy beads. The procedure nearly killed me, but once recovered, was able to take a few trips even though I was put back on IV chemo.

I stopped IV chemo in February. Then I took a fantastic two-week trip to Europe. I got to see much of the art that I studied in college. Another check off my bucket list! I fell in love with the art a little bit more. When I returned, I tried several different oral chemos, none of which worked. They gave me more side effects than effective shrinkage of my tumor. About eight weeks ago I stopped taking any oral chemo drugs because they were ineffective in slowing the progression of my tumor, but were very effective in making me sick. Since that time I have gone into progressive liver failure which included jaundice, massive liver enlargement causing severe pain, swelling in my abdomen and legs, and mental confusion. I have stopped communicating with most people. This gives the impression of being antisocial. I want everyone to know that I loved and appreciated your contact, but I was physically and mentally unable to communicate with you.

Thanks for all of your love and support over the years. It has meant the world to me.

It was important to Robin to provide a place where her friends and family could gather together and share our favorite memories. 

Please use the comments section of that post to share your thoughts, feelings, memories, and anything that reminds you of our girl Robin.

fuck cancer t-shirt

#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

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.  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

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. Read more