Chemo #3 And a Merry, Stable Christmas to All!

Lets just start of with some good news for once! Tumors are stable! Meaning they aren't growing and there aren't new ones (had scans) The lungs are a little questionable but the chemo I'm on can help with that. The brain lesions show a halo which is dying tissue. No new tumors in the neck - just one lonely lymph node trying to keep up with what we are throwing at it. Liver is normal. Burns are almost healed and no more feeding tube. More on those things later.

Chemo #3. Shirts came in too! 

I had my third chemo on Wednesday and feel pretty good. I have morning nausea from the mucousitis so that has been amplified as well as the fatigue, but all manageable. I am hoping that most of my side effects I was having the last two rounds were more from radiation and the combination of coming at my body at all angles than just the chemo. Here's hoping. Especially since it is the holidays. I would really love to feel ok for Christmas. Right now I am doing alright and plan on spending Christmas morning as we always do, at my parents.

My burns look so so much better. I only have to wrap them at night now and only behind my ear because that was so bad, easily 3rd degree. It is close to being healed though thankfully. The rest of my skin looks good and all new cause as in all burns the skin peels. I will be honest, there was a few moments when I didn't really think I would be able to heal. I think it was more me being at my lowest. Just knowing it all needed time but I just couldn't imagine that time actually coming and going. But here we are and I'm healing up nicely.

#baldy and how it looks at this very moment

So the feeding tube... I had scans and my body already hates the contrast needed for them so to add not feeling well and then putting the contrast into my body that hasn't really had that much volume in my stomach for weeks, well it came up. As did the feeding tube. It was late on a Friday so I said I would try my best to get calories and nutrients in and keep them down for the weekend and if that didn't work then I would have it replaced on Monday. Well to my surprise I kept things down and outside of the morning nausea it hasn't been a problem. Eating is a chore and will be for some time as I am still re-introducing solids into the mix, but the fact that it isn't a tube hanging out my nose I am happy. Nothing has any taste besides lemons in water. I can have a super sweetened drink and it just tastes like water. It is so odd. Most things just taste like mush so it becomes a mental challenge. I am working hard at it though and hope that it gets easier each day. I think I am going to have a re-do of the holidays when things taste good again, get all the good things I am missing in! I also have a random list of places I want to eat when the taste buds awaken again.


Christmas eve is tomorrow and I want to wish all of you a happy and HEALTHY holiday! Thank you for following me on this journey and hope you share your holiday with those you love. oxoxo


Burn progression below....

12/10/16 3 days after last neck radiation treatment

12/12/16

12/13/16

12/16/16

12/17/16

12/19/16

12/23/16; 16 days after last radiation treatment

2nd, maybe 3rd Degree

Five days ago was my last radiation treatment and apparently this is when the side effects peak. That said, I easily have 2nd degree (partial thickness), maybe 3rd degree (full thickness) burns on a good portion of my neck. It doesn't help that today is also when my white counts are supposed to be the lowest (usually day 7-10 after chemo, but last time it was day 14 so I am assuming that since it is day 10 I am either going down or already there...) so my healing superpowers aren't what they usually are. That said, I have had the spot behind my ear looked at but it has progressed a fair amount that I felt I needed to be seen again. So far I have been using silverdene cream at night but not covering it (wasn't ever told to) and then cleaning it up throughout the day. Burns are tricky because they look so gross that you don't know if it is healing or infection. Luckily I am on antibiotics for infection so our bases are covered there. Regardless, I didn't feel like it was going in a good direction so I had a nurse visit today. And I was right. I needed a lot more of the silverdene cream and definitely needed a dressing on it. How do you put a dressing on the neck you say? (and you can't use tape because of the burned skin and I have a strong sensitivity to tape/adhesive #special) well you get a special turtle neck/choker/giant bandage. If I already didn't look sick, now people will be wondering what the hell happened to that girl! The nurse showed me how to clean and dress the area which was very helpful because I literally have been going off of YouTube videos... and they aren't too informative. I feel better having the dressing on and feel like it will help the healing process go a bit faster or at least give it a boost while my white counts are down. One thing that is good but bad is that due to my surgeries I don't have feeling/sensation for about 98% of the burned area. It is good because the pain would be substantial but it is bad because I don't have the sensations to tell me how bad it is and what areas are the worst (even though I have a good idea). I am doing all I can to avoid infection and another hospital stay. 

 
My bandages and before the bandages... The worst part is behind my ear.

I got out of the house yesterday as well as today (besides the nurse visit) and am slowly regaining strength. I am trying to get out each day and walk a bit since it isn't good to just sit around all the time (because that makes me higher risk for additional clots) but with that said it takes a lot out of me. My throat (inside) is still so sore and swallowing is painful, so talking makes it a little worse. AND pain pills for some reason do not help with the pain, so strange. I am attempting to eat in addition to the feeding tube because the faster I can get back to eating regularly, the faster I can have the feeding tube removed. I'm a long ways from that though. I am basically only eating/drinking liquids and when there is more than just empty calories in it ie: drinks, then it usually comes back up. This could be part of the mucositis issue I've been having but if it doesn't improve soon then I will have to go in and figure out what is really happening. I know that I'll have the feeding tube for at least two more weeks. 

When I am home I have been enjoying my amazing new couch and napping a good amount. I peruse social media mostly and have been watching really random movies on Netflix because why not. I am doing my best to not do too much and let my body rest and heal, also I get pretty nauseous when I move a lot or bend over a good amount. That said, I am putting on another random movie now and then it is early bed time for me cause I didn't nap today and did a good amount of things. 

I would love to know where you are reading my blog from - I know that most is my family and friends, but I see a few people from overseas and would love to know! Leave a comment if you don't mind (and how you stumbled upon it!) Thanks for putting up with my long winded blogging! 

I'm a nerd and love things like this. I just happened to look at my phone at 12:12 12/12. #nerd

Self Imposed Quarantine

Since finishing radiation on Wednesday I have put myself under my own self imposed quarantine... There is some gnarly sicknesses going around and I just can't risk catching whats going around. Most of my friends who want to visit have little kiddos who are sick too so I have kinda just been lounging at home on my comfy, cozy couch. I have rested a lot and am really trying to eat in addition to the feeding tube but it is proving very difficult. I am going to make an appointment first thing Monday to talk with the nutritional team and get a handle on the feeding tube things and see what else I can do to get more calories in me. Never thought I'd be forcing myself to get calories in me... always been the opposite!
Tonight I left the house for the first time since radiation and I needed to look at some things at the store and just get some walking in because I've been pretty stationary. I wore a mask because I am so so nervous of getting sick and landing back in the hospital. The past two weekends were spent there and I didn't want to go for 3 in a row.

Venturing out!

My friends have been so nice and giving - my fridge is full of every type of liquid you could think of! I'm definitely taken care of. I know a few have been worried about me being home and alone but things have been good and it has been nice to just settle into my place and relax and know that people are close if I need them.

 
Just some random selfies
Some of the hair is still hanging on, guessing it will all start to go in the next week from this last round of chemo.

My radiation burn is pretty intense and gross if I'm honest. Burns are just hard in general, but when it is on your neck it is hard to treat just because shirts hit it and you can't bandage the area so it is just weird. Doesn't help that the side it is on is the side I like to sleep on. I'm adjusting though. I am very thankful that from my surgery I don't have any feeling where the majority of the bad burn is so I can't feel how much pain I am in. I know that it is playing a factor into my energy level because my body is still experiencing that level of pain whether I can feel it or not. The parts I can feel are not so pleasant though. Hoping that things heal up fast, even with the drop in my numbers from chemo. Also that it doesn't scar. Here's hoping!

right after a shower

Radiation - DONE

I can officially say I am done with radiation - 20 treatments done. I can't even explain the relief I have that I am done with them because they were so hard. The level of damage they did to me is up there with biochemo and that isn't easy.

Radiation has done such a number on me and landed me in the hospital last weekend once again. I woke up the morning after my second chemo just feeling awful. I actually threw up my feeding tube (not pleasant in the slightest) so I had to get that replaced while I was at radiation and my energy was so low that I knew I was dehydrated. I asked to get fluids and while they were working me up to see about fluids I spiked a giant fever, 104. Fever = admitted for two days. We weren't sure of the source for the fever as it could be multiple things such as lingering infection from the week before, the new bone med they gave me or the burn I had gotten from radiation. They also did a CT of my face/neck that showed I had a blood clot in my vein in my neck that is caused from radiation. It isn't the same as a clot that causes strokes or goes to your brain or such, but that my body will take care of it with the help of blood thinners twice a day. When it comes down to it we decided it was the burn that was causing the fever.

My artsy hospital shot

My burn is from radiation and is behind my ear. It was a giant blister that burst and then just is not good. The rest of my neck is burned now as well, but not to that extent. I have been keeping a close eye on it and treating it. It is good radiation is done because I don't think my skin could take more. It is all tanned and burned and starting to peel. The inside skin of my ear is burned as well. Just a lot going on for a body that is already weak.

My Radiation Completion Certificate, Mask and Flowers

Just some real feelings is all.. 

Little look at radiation prep

I did finish another chemo and felt really good that day and the day before. I truly think most of my side effects are from the radiation with just a bit from the chemo. They reduced my dose for one of the chemo drugs and I think that should help with my numbers dropping so low. I am laying low though just to be safe and not risk anything, and to let my body have a break from things and not land in the hospital again. While I was at chemo Intermountain Therapy Animals came and visited and I got to snuggle this sweet dog Luna for a bit. It was so sweet to just have her lay her head on me (something the owner says she doesn't do with people, that I was special haha) Hope that I see her again next time.

Luna

While I was in the hospital over the weekend my dear friends came in and decorated my house for Christmas with my tree and some decorations. They also did my picture wall and cleaned. My picture wall probably wouldn't get done for weeks because it takes a lot to do.. and there is a lot of pictures. They did a really good job and I was so surprised to walk in to a tidy and decorated house.

My elf deliveries continued as well - and man do they not disappoint! Today was the last and giant one and a bunch of people pulled together and got me the couch I had been looking at since moving. I have said it before but this time it's proven - my army is amazing! And sneaky! My couch makes it feel like a home finally and I can have people over and not be stressed about where they will sit. Now I have enough room for two people to crash if needed and that is helpful to know in case I need someone to stay with me overnight.

6th day

7th day

8th day (delivered secretly to the hospital even

9th day

10th day

11th day

12th and final day! And you can see part of the picture wall 

I am eager to heal from radiation and hopefully get some energy back and start feeling better day by day. I plan on staying low key for the next week and hope that will help with things. I have been better at asking for help from friends on things like laundry and food and random things. Takes a lot for me to do so, but I know it is necessary.

My booster Tshirt campaign ended as well and it was so successful! Over 80 shirts ordered! Can't wait to get them. Thank you for all who donated and purchased.

Next up is scans on December 16th so here is hoping that things show improvement and that the treatment is doing what it is supposed to.