Liver ... I need you to work with me!

The liver saga continues!

I got the liver biopsy results today and it showed drug related inflammation and the same characteristics of autoimmune hepatitis. As not fun as that sounds, it is actually better for me for the moment. Because it shows the same properties as a compromised, damaged liver I am ok to start a drug that is usually used for liver transplant patients. This drug is called CellCept. I can also start tapering off, yes off, of the prednisone (steroids) that I dislike so much. The goal is to get me off of the steroids for a couple reasons, one being the long term effects are large and the general side effects are a lot to deal with (if you haven't noticed...) and the second and main reason is that I can not start a new systemic cancer treatment while on steroids. If everything goes well I will be down to 5mg or off completely in 3-4 weeks. Goodbye chipmunk cheeks, extra water weight, irritability, ravenous eating, shaking hands/body and sleepless nights! 

I also had my liver levels checked today and sadly they are elevated even more than I was when they admitted me two weeks ago, in the 700's. Thankfully they agreed that I could monitor from home and not be admitted to just sit in the hospital. I was worried that they were high again because I have been extremely tired the last few days and extra itchy (one of the signs that my bilirubin is higher than usual but I don't have any yellow discoloration). I don't have the normal symptoms of an elevated/pissed off liver like dark urine, yellow skin or eyes. If I start to see these things then I will go in, but even when I was at 1200 I didn't have these symptoms so I don't think it will be a problem. I am just happy to not be sitting in the hospital writing this! 

I will start these meds as soon as my pharmacy fills them - most likely Thursday morning (day after tomorrow) I am hoping that the side effects aren't too intense and are easier to deal with than the steroids. We shall see. 

So liver, I need you to work with me! Please tolerate and respond to this new med so I can move forward in treatment and not waste anymore valuable time. Just being off of a treatment for two weeks my tumors in my neck have started to grow. Who knows what is happening in my brain and lungs. I try not to think about it. Still no symptoms from those areas so I am hoping to keep it that way. 

Ups, downs and meltdown

Sometimes I have to just stop and breath. That is what right this moment is. It's crazy how one day can hold so many emotions. Here's my day. . .
I am staying up at Snowbird, a local ski resort that is open for summer and my best friends have a week timeshare. It is a staycation about 25 minutes away and seems like a whole different world. You escape the heat of the valley into mountains and beauty. I am lucky enough they let me come stay the whole week, I'm sure there are days they want it to themselves though. Regardless it's the 4th year I've joined them and I look forward to it each year. Today I planned on heading to the valley to meet some friends from out of town and then I got a call to look at an apartment. As I got ready I could feel that things would go one of two ways... Good day or a steroid rage day. Definitely was heading for the latter.. I drove down the canyon and had to check myself because I was starting to just get annoyed at the drivers for no reason really. Then the apartment was pretty awful. Then just didn't feel great and had to fill time until meeting friends. By the time I met the friends I was drained. Luckily once they got there I got a second wind (the sugar high didn't hurt either) and was able to really enjoy seeing them.
After that I drove back up the canyon and just was overwhelmed. So many thoughts and things were just racing through my mind, I couldn't shut my brain off. Once I got back to Snowbird I needed to just stare into nothing, not talk to anyone. Luckily they have a solarium/quiet space I could take advantage of and I sat up there for an hour. It helped calm me down a bit but the thoughts still just came rushing in. Headed back to the room and my friend could see through the fake smile and I just lost it. Today I was just done once it is all said and done. I had my cry and then took a nice shower. Thoughts slowed down and I was able to relax on the couch.
I then turned the channel and there was the Craig Sager speech (next post) definitely not what I wanted to hear at the moment but definitely what I needed to hear.
Now to bed. Today is done. Tomorrow I can start fresh. Sometimes one day at a time is a giant feat. As in today. And sometimes you just need to actually let people see you in the breakdown. Be human. On to tomorrow.

Scans today

Today is scan/restaging day.
Whenever you change treatments they like to have new scans so they can have a new place to compare progress to. My scans were originally scheduled for later this month so they got moved to the next available, which happens to be a Saturday afternoon. Had some other plans, but that's the life of a cancer fighter - plans aren't really a thing. You can try but you always know that something may alter the plans or you will wake up sick as a dog. You never know.

I haven't really thought much about these scans - the anxiety isn't really there so much. If I'm being 100% honest I wouldn't be surprised if it has spread somewhere else, but I don't like to think that. I have been so lucky to have it stay localized that I just wonder how long that run will last. I truly hope that thought isn't true but it's always a possibility.

Scans never used to get to me. It was just something I did every 3 months, then 4 months, then 6 months, then a year. Now back to 3 months (or more!) They came back clear for so long that I just got used to it. Now I know there are tumors (just my neck) so I know they aren't clear but they could be worse. Now I either have major anxiety or none at all. So strange.

On a good note, I started my new/old treatment on Wednesday night and now on Saturday I can see a noticeable difference in the tumors sizes. Smaller and so much more comfortable. I haven't taken a pain med (besides ibuprofen) since Thursday, which is huge. I was to the point I was talking them every 4 hours on the dot. So great to have relief. I'm still not fully pain free and sadly will be taking a good amount of pain meds for my scans since I can't lay flat without it freaking out... Having my sister give me a ride today which is new. I usually go these things solo, but taking pain meds I don't want to drive. I'm being smart - asking for help. Strange I know!

In prednisone news, the water weight and moonface kicked in yesterday. Woke up so swollen. I took some pictures out with an old friend and it took all my might to not be devastated looking at the pictures and how heavy I look in comparison to a week ago. The steroids make you ravenous and literally uncontrollable urge to eat everything in site. It is unreal and so hard to curb. My witching hours are 3-6. That's when it hits the hardest and everything in site needs to be tried. I have done my best to have sensible snacks around but man it is hard! I know water weight will go down once I stop the steroids, but the added weight from the ravenous eating won't be so easy. Really trying to control it. I am down to 80mg (started at 120mg) and will continue to taper as long as my liver enzymes continue to lower. At this rate I will still be on them in 5 weeks. Talk about a summer of roid rage! I will learn the tricks to deal with it, just have to work at it all. I do like the energy it gives me, even though it is false energy. I don't like when it is crazy anxious energy though, that's happened two days this week. Not a fan. Also it affects my sleep so now I'm on sleeping aids, necessary evil. I haven't talked to Oprah or slept are/drive or anything which I'm taking as a win. Each day is different.

Random exciting other things:
Going to Yellowstone in August and am really excited
I am looking for a place to call my own. Renting, looking for ideally a 2bedroom place. Keep your eyes open for me - no apartment complexes though.
I'm going on a staycation to Snowbird tomorrow and am making some fun treats for us to have (prednisone driven...) I get excited to cook when it is for other people. Planning on making smore bars and a tasty fruit tart. Yum!

Hope this weekend finds you playing and laughing and escaping the sad news of the world. This life is tough but it has so many little things to be so grateful for. Like making a fruit tart for friends - which really boils down to I am happy I have the energy to make something, that I can make it, that they will enjoy it and that I enjoy them enjoying it. Little things.

Oxoxo