So much sleep

Two weeks since my last post and it feels like a few days. Things were pretty good for the first week of that, got out and was eating more. Threw my friend a a baby shower (with the help of friends) and I think we did a good job! We served the things the mom-to-be has been craving throughout her pregnancy - main entree McDonalds hot and spicy chicken sandwiches. They were a hit. And it was entertaining to order a mass quantity and see their faces.

 


By the end of that night I was hurting pretty bad. I know that I had pushed my limits for the day but the pain was pretty intense. I figured out that I was due to switch my pain patch and was about an hour and a half behind. So it shows it's working... The next few days until now I've felt pretty crappy. I have had intermittent fevers and extreme fatigue. Nausea comes and goes. I haven't had fevers for the past 3 days, but the fatigue is still there. I've been laying low and not doing much, listening to my body closely. The fevers didn't last very long, around an hour, so I didn't call/go in. If they come back and last longer then I will go in.

While I've been lounging, I caught up on emails and such and I got my final CT scan reports. Sadly I came across some bad news. There is more spread, to my spleen and liver. It doesn't say it is cancer but the only way to know for sure is to biopsy. We didn't talk about this spread at my last appointment because the CT wasn't fully read by then. I assume we will go over it at my next appointment. For now it doesn't change the treatment I am on. It just adds one more hill to climb. Or makes it steeper. When I read the report I didn't react really, and still haven't. I have become numb to bad news because I don't really know what to make of it all. The hardest part is telling those close to be bad news over. And over. And over again. That is more draining than the worry of the spread. I get nervous for any pain or issues caused from the spread, like pain. But I haven't, like I said, reacted to it yet.

My next appointment is April 5th. We shall see what they say then. I hope that my blood levels are good and stable. Scans aren't until May 1st.

Have some tentative fun things planned and I hope that my body will cooperate.

Also, little miss Ruby had scans this week and her tumors are all stable! Way to go little 4 year old rockstar! Kicking this cancer like a boss!

Under control

Happy to report that the last few days have been much better and I have gotten my pain under control. I have been able to get out of the house and do things each day which does a lot for my mental well being. That said, today was a pretty lazy day and haven't done much. Headed to dinner soon where I hope to eat lots. That's being wishful as my eating is still minimal, but I am getting better.

Hoping things continue to improve or at the very least stay stable.

One day at a time.

Manageable

I have been on the pain patch for just under a week and it is finally starting to kick in. I am still having to take meds for the breakthrough pain, but not nearly as much as I would without the patch. My pain is manageable now, but definitely still there. I just have to be cautious of my actions and movements as sometimes I turn and it sends a shooting pain out of the blue. I can't squat or bend down so things on the ground are tricky. That's where my trusty claw grabber comes in handy! When I had my back surgery three years ago that thing was a life saver and now it is back to prove it's worth once again. It's been helpful getting things from lower in the fridge or in the low drawers around the house.
Right about now is when the BRaf inhibitors usually start to work their magic so I have hopes that they are working hard and getting this progression under control. I hope to see improvement from here on out. These meds are the ones that make me super sensitive to the sun and today I pushed my limits being outside without protection so I bet I'll be a little rosy. I went with a friend to Wheeler Farm to just see the animals and get a little walking in. Since October I haven't been as active as I would like and then having this last month pretty much keeping me in bed or on the couch, my muscles have definitely started to go far far away. I can feel that I am weak and know that I need to work on regaining my basic muscles again. For now it is walking around stores or farms. Little things that will help just wake up my body hopefully. Plus I don't like laying around all the time, even though I know it is necessary at times.

For now I don't have an appointment until the 21st. Hopefully just improve until then.

The sun interfered... 

Puppy Bjorn did really good with all the animals! 

Pain, Pause and Progression.

As I have mentioned before, I have been in some intense pain in my joints. Mostly my hips and pelvis. A few days after my infusion I knew I was dehydrated so I went in to get some fluids. Because of the pain they did Xrays on my hips and pelvis to see if it showed anything. Sadly it did. The spot we knew about in my femur was more prominent and then there were all of these holes forming from the cancer deteriorating the bones in my pelvis. This gives a better understanding on the pain.
As soon as my xrays hit my doctors desk he decided I needed to move up my scans (10 days early) and then see me the following day. I knew that wasn't good. I ran into him and the nurses in the hall while waiting for my scans and I just knew that all this wasn't good and so I broke down. I am just frustrated and really wanted to stick to the Keytruda and have it work. Plus when I am in pain I am so much more vulnerable emotionally and break down much easier.
The appointment went better. These spots are throughout the bones and they are surprised I am able to tolerate as much pain as I have been. That said they prescribed a Fentanyl pain patch (isn't working great so far..) The good news from the appointment is that my lungs are stable and one of the brain tumors is gone and the other is smaller. Little wins. The Keytruda is paused and can be an option in the future. My cancer blood marker is in the 500's and growing (it should be 100ish) so it is just showing that there is some cancer growing or getting ready to grow at a rapid pace. We made the decision to go back on the BRaf inhibitors (debrafinib/mekinist) as we know that works fast at shrinking my tumors. This will hopefully help get my pain in control because I am not doing well with it.
I have been sleeping a lot because of the meds as well as it keeps my pain to a minimum the less I move. Working on staying hydrated and fed though because that's what led me to get dehydrated and needing fluids.
I wont lie, this information makes me upset and vulnerable. I just feel like it is close to being out of control and I'm not ready for that and it scares me. I am working hard on just working on things one day at a time, and it has been a challenge.

Hopefully these meds can reign in my cancer growth and its spreading. For now I am working on pain management.

Only one visible

It's hard to show but if you look at the bones you can see little bubble like spots, those are where the bone is being attacked

Keytruda #2 down

I finished my second infusion of Keytruda two days ago and am feeling pretty good. This past 10 days though I have been having insane and indescribable body/joint aches. They get so bad at times all I can do is lay there still and wait for meds to kick in. They have seemed to build and then drop. For example, Sunday night I couldn't move and it took my meds over 2 hours to even take the edge off. And then yesterday (Weds) I was ok by the end of the night even though I couldn't move in the morning. We don't have a clear understanding as to why I am having these or what is causing them but my theory is that my body went from almost negative white cell activity to overproduction of white cells (which happens in your bone marrow) so I feel like they are like cancer growing pains. It has made me stay in bed a whole lot as the pain just drains me. Hopefully they begin to drop off and I can move on.

Keytruda #2, trying to embrace my little fuzzies

My liver and my other labs all have come back normal since starting treatment which is really great. Gives me a glimmer of hope that I can stay on this treatment for a while and hope it will get the knitty gritty from these damn tumors. 

I haven't been up to much lately besides resting. I get out as much as I can but lately I have felt like I have no energy to do much so I then, don't do much. I think part of this is also not having enough fuel in me to do a lot. My appetite is still almost nothing and I have lost enough weight that practically everyone mentions it. While I welcome weight loss it is still hard to know that it is from such a brutal way. I am down to my lowest weight I have been in YEARS. I am 35lbs away from the thinnest I remember being. I just wish it was a healthy weight loss and I was strong, and not so flabby. And that my boobs didn't go down so much too! 

I've been invited out of town the end of the month and am going to try and get stronger so I can do that. Of course we all know that a lot can happen in a short amount of time so I am not getting hopes up too high but it would be amazing to get out of town for a bit. And feel good while doing it! 

I went and saw Mandy's grave today and glitter attacked it! It was pretty fun. It wasn't a sad experience, more a goofy one. Just like we were when we were together. I've always wanted to just throw glitter around and I did just that today. I also got some new glittery nails which always will remind me of her. 

Next appointments are scans on March 17th, hopefully the lucky date will bring me luck! What to do until then...