Week 4+

I don't know how time has been flying so fast. I want it to slow down, especially since I am now on limited time. I have tried to keep busy but have gotten to a point that things are just too exhausting and so I am staying home more, which I am ok with if it wasn't so dang hot. My swamp cooler just can't keep up with the heat and I end up just sweating like crazy. No fun.

Medically there are a few new things. I am not on oxygen 24/7 and I can tell a big difference in how I feel. I have portable tanks but they have proved to be hard to lug around so I don't venture out too much with them. I also am retaining/producing a lot of fluid and had it all drained off a week ago. They pulled off 6.6 liters/14lbs of fluid. To say I was uncomfortable going in is an understatement. I looked easily 5 months pregnant. I have built up almost that much again and am schedule to have a permanent drain placed tomorrow. It will be good to be able to drain at home and not get to this uncomfortable point. Not looking forward to the placement of it, but it should be quick. The fluid buildup is just a sign that my organs aren't working how they are supposed to, that things are progressing and not in a good way. This is when I know too much and try and not get my head too wrapped up in it all.

I have had a couple get togethers with friends and family so that is nice, but like I said it is proving to be too troublesome and uncomfortable to do that anymore. So now I welcome visitors on my big red couch and we have good conversations and maybe some food or drink.

Here's the photo recap of the last week or so:

Officially on Oxygen

My old school crew visiting at the farmers market

Morgan; one of the many who have made the trip out to see me

6.6 Liters of fluid/14lbs lighter

 

My best friend forever 

My godbabies and whole heart

Got them "A" bracelets so they can remember me, still a bit big but they will grow into them 

Also my #melafreakinoma shirts are still available for 3 more weeks booster.com/melafreakinoma3 or I have a new one that's for Reckless Optimism booster.com/recklessoptimism Both help fund my end of life care as well as my celebration of life. My GoFundMe is still open as well gofundme.com/neverquitalexis

oxoxoxox

Brain and Liver Update

I can't believe I didn't do a blog on this already... I'm a bit scatter brained lately. Guess we can pretend it is the brain tumor but after finding out it is SMALLER it is not as likely. Yes, it is smaller! In one month it went from 6mm to 5mm. This is very good because it wasn't thought that the meds would reach my brain lesion so to have it shrink in a month is impressive. My doctor was shocked it had shrank so much without radiation. That said, we are still pursuing the SRS radiation. The hope is to do it after my surgery is done and I have healed a bit. Hopefully in the next month.

My liver is down even more as well! Both are only 10-20 points about the average numbers. It was a good appointment for sure. They are having me stop the meds (as of two days ago) to see if the numbers continue to stay down. I will find out tomorrow (or the next day) whether or not they are still down. If they are still down then I can stay off of the CellCept (liver med) and just monitor the levels.

I really like when appointments have only good news in them, I could get used to that!

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. 

Liver Biopsy Today

Today is when I get my liver biopsy - and I'm not looking forward to it in the slightest.

I am hoping it is going to be fast and that I will have some sedatives.. I know they don't put you out but I don't respond to the conscious sedation well so we shall see.

This biopsy will help determine what is going on with my liver and hopefully give us some answers as to why it continues to stay elevated as well as why it isn't tolerating any drug/treatment we have been trying. The doctors said that it is acting as if I have autoimmune hepatitis but that I am not testing positive for it, so hopefully a closer look at the cells and such will give a better idea of what is happening.

After they look at the biopsy they will decide if I should go on a liver med or just continue the steroids. Ideally I will come off the steroids and the liver med will regulate my liver enough that I can start a new treatment and continue fighting the cancer. As of right now I am not on any treatment and can not start a new one if I am on steroids. We really need my liver to start shaping up!

As of three days ago my liver numbers were trending down but still high, about 8-9x the normal. They will check them again today I believe and we should see what they are doing.

Here's hoping it is a fast biopsy!


***Update***
Biopsy went well. It wasn't nearly as bad as I had anticipated which was a huge relief. They gave me mild sedation, which actually worked, so I wasn't too anxious as it was happening. The pain wasn't bad either. I think the hardest part was having to lay on my stomach for 3 hours after the biopsy to help stop bleeding.

Also I wanted to make sure everyone knows that they are not doing this biopsy to look for cancer - they are looking for reasons why the liver is freaking out when I am on treatments.

We should have the results by Monday