Showing posts with label feedingtube. Show all posts
Showing posts with label feedingtube. Show all posts

Sunday, January 1, 2017

Hello, 2017

Goodbye crazy 2016 and hello 2017, may you treat us well!

Usually on New Years I like to look back at the year at all the good that has happened and lately so much craziness has been going on in the world that it is hard to look through that fog and see the good in the dark. That said, I still know there was so many good things to be happy about for 2016 as there was to be upset about.

My year was once again consumed with being cancer Alexis, not how I'd like to always be, but sometimes you need to commit yourself fully to something to get rid of it. I know I am not rid of my cancer, and it in fact is worse than it was last year, but I know I have given it all I have and don't plan on quitting anytime soon. I have done 8 different treatment options in 2016 alone, including surgery, brain radiation, neck radiation and BRaf inhibitors multiple times. I have been hospitalized for drug induced hepatitis (liver issues) three times, went to the ER three times for all different reasons, hospitalized for nuetropenic fevers and then infection one week later. I had to have a feeding tube that I threw up twice. I got a port placed and it was the best thing I've done. I had a liver biopsy. I had a weird breathing treatment. I have two creepy radiation masks of my face/head. Got three radiation tattoos across my shoulders/chest that will be there forever. I gained 40lbs from a 4 month high steroid treatment regimen, to only drop down to my lowest weight in years due to chemo and radiation. I have had to force myself to eat and realized the amount we take tasting for granted. I have mucousitis. I have drug induced hypothyroidism. I have come accustomed to giving myself blood thinner shots twice a day. I had a 6" x 6" tumor mass/cluster removed from my neck. Received 2nd and 3rd degree burns from intense radiation to my neck and head. I lost all my hair a second time this year. I lost a good friend to this crazy cancer and it lingers in my head daily that I am still here and she is not. I have learned that cancer is my job for now and it will stay that way until I am NED (no evidence of disease) or don't have a choice.

Personally life was really pretty great this year. I traveled when I could, headed to California, Bear Lake and then traveled around to things in Utah that I had never made the time to see like the Spiral Jetty, Peach Days, Snowbird and Eden Balloon Fest. I went boating. I saw the Dhali Llama and got a creeper picture with him (he didn't know though...) Saw some great friends get married. Celebrated the 4th and 24th of July, Halloween and New Years. I worked when I could for a company that has been more than flexible with me and I'm beyond grateful. I finally am in my own place and have all my things in one place and no more storage unit. I had my best friend some in and surprise me from out of town multiple times because she knew I needed her. I entertained the idea of dating even if the other person didn't have any idea that's what was happening - can we say friend zone? I need to work on that... I reconnected with some friends from years past and they have been some of the most beneficial friendships through this all. I met my mini melanoma soul mate Ruby and am so happy she is still fighting on without even realizing she's fighting. Also becoming good friends with her Momma has been a blessing in itself. I had people spoil me and support me and walk with me and send letters and cards and presents and elf deliveries and a couch delivery and just so many things!

All the ups were met with their downs that's for sure. I lost some amazing pet friends as well as some great acquaintances.

For 2017 I want to live in the moment and, not to be morbid, but I want to just live. I want to make it to next New Years feeling better than I feel today. I want to gain strength every day - mental and physical. I want to still be the Alexis that just stops by to say hi cause I was in the neighborhood or sends you a text because you popped into my head - even though I know people think that's odd. I thrive on connection and want to have more of that with those in my life. There are too many days that I feel so lonely yet am surrounded by so much love. I hope to change that feeling and build up my core support group so they can hear me even when I'm quiet. I don't want what 2017's negative potential to make me hard and cold. I want to hold out hope that there is still good in all people. I want to be unapologetic-ally nice to those around me and still find the positive in all the things I can. I want to spend more time building traditions and experiences and adventures with those I care about and not have to apologize for who I am. I want to show people what #stageIVlivin is all about so they can hopefully live their lives more fully.

2017, I hold out hope for you. I want to believe you will be kind to me if I am kind in return. So, bring it on 2017.
My New Years Cards


Couldn't resist these glasses

My New Years crew for years now

Gubby and my 10th New Years together! <3



Friday, December 23, 2016

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

Saturday, December 10, 2016

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