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

Brain SRS Radiation & 11 Neck Treatments: DONE

Cancer Talk

I am officially over half way done with radiation on my neck and done with my SRS brain radiation. Thankfully time goes fast currently so radiation hasn't seemed too long. I will say it does get old having to go up there 5 days a week. This week, because of Thanksgiving, I went Sunday and then tomorrow is the last for the week and I get 4 days off. I really need it cause I am struggling big time with dry mouth, mouth sores and an inflammed throat. Imagine the pain strep throat on one side - it's hard. And dry mouth is not my favorite. It doesn't help that chemo also has side effects of dry mouth and mouth sores - so I am doubling down on that. I drink more water than I can even count. They prescribed a mouthwash for the pain but my insurance denied it ($160 out of pocket) so I guess it is going to be cloraseptic throat spray for me.

Neck Radiation (those are mouth guards)

Neck Radiation; you have to hold painfully still

Brain radiation wasn't too bad, just took some time. I got another mask made for it and was allowed to take it home. Not sure what I will do with such a thing, but it's a lot like a badge of honor. I will be allowed to take my neck one home as well. Both tumors were treated today and we wont know the results until late January with the new scans. I know that it is a possibility to do it again as well as Gamma Knife radiation. Side effects for SRS is usually just your current symptoms amplified. For me I am happy that I don't have any real side effects from the brain lesions. There is also possibility for swelling and being tired.

Brain SRS Radiation Mask

Brain Zapping Room

Brain SRS Radiation, again you have to hold super still

I also got the results from my bone scan. Sadly it wasn't what I had hoped. The area we were trying to rule out didn't show any disease which is good, but it showed areas of concern in my right femur as well as one of my lower right ribs. Apparently bone lesions are painful and I don't have any pain in my femur, but I do have pain in my lower rib. This pain I thought was my liver having spasms but that may not be true. Right now it is small areas and chemo should treat it for now. If not then we can do radiation. We will also be adding a bone strengthener to my next chemo infusion (December 1st, next Wednesday).

Bone Scan Report - Also you shouldn't leave me in a room with access to my charts cause I will mess around

The white dot on the top right is my largest brain tumor.
It has doubled in size since my last scan. 9mmx9mmption

This one is harder to see - it is top right on the skull line and super faint (which means it is super small and new)

Today was a hard, emotional day. Not only was I doing both radiations, I woke up to discover that my hair has started to fall out. There is nothing in the whole world that can prep you for this feeling - even losing it once before. I thought I was ready for it and knew what to expect but those first few hairs just rock your world. I don't know how fast it will be but I am most likely going to shave it on Friday, make it through Thanksgiving. I was thinking I wouldn't have to worry about it until right before my second round of chemo but it has come early. My scalp/hair folicals just ache and apparently that is a sign of it going. The area where the radiation hits is going in multiple strands when I brush and the rest is just a few strands. I can't face the clumps and handfuls this time. When those first few strands were in my hands I just sank. I think it just made this all to real, and just not on a good day (as if there is a good day for such a thing.)  I have a few beanies I'm going to wear and then enrolled a friend to make some super soft fabric bandanas cause I know beanies aren't super practical every day. We will see how this all plays out because I've never had to deal with full baldness. It will be nice to not have to shave my legs for a few months though (yes, all hair on your body falls out.)


Regular and more fun talk

Moving and unpacking are finally coming along and things are looking a lot more home-y. I hope to start hanging pictures soon and get my "office"/second bedroom not looking like a random hoarding room. I still am without a couch but am hoping to get a good deal on black friday or cyber monday (or after when everyone posts their old couches for sale) I also am on the look out for a smaller kitchen table. I baked for the first time tonight and for a tiny, old oven it did a pretty good job. I made my oncology team and nurses some brookies (brownie/cookies) to tell them how thankful I am for them. Also to thank them for getting me to another birthday earlier on in the month. I also am officially done with my storage unit! After 2 1/2 years I am finally free of that annoying monthly payment for a room to store my random shizzz. Ahh freedom.

So dang nice! And so surprised! I needed a little tree!

Last night I was watching TV (it is nice to have internet and tv!) and it was around 9pm and all of a sudden a giant knock on the door, scared me shitless. Living alone and without a big scary sounding dog to warn you of these things can make you feel a little apprehensive. But I got up and turned on all lights and hadd my phone ready just in case and opened the door. To my surprise there was a handful of presents for me and a note. My friends - not sure who yet - have started a 12 days or radiation countdown for me. Talk about bringing happy and grateful tears to my eyes. I mean really. I know I have incredible friends, but this just makes me appreciate them so so much more. You all have shown up so much for me, especially these last few months. I'm excited to get that knock on the door now. So thoughtful. Tyring to figureout the handwriting... hahah

Tasty dipped pretzel rods, nice candle, some homemade zuchinni (I think) bread and a super nice adult coloring book with colored pencils. 

I launched my Booster Tshirt campaign (see last post) and I am beyond excited to say that because of incredible people in my life and through here I have surpassed my goal and am still going! So so humbling. I am so excited to get them once they print, just in time for the holidays.

On this past Friday I went to an event I have only heard of and never actually gone to - Drag Queen Bingo. It is a fundraiser for the Bears Chapter of Salt Lake (a bear is a burly gay man) and this event was to earn money to do sub-for-santa for as many kids as possible this season. My mom, sister Sarah, Maryann and her mom Judy and Tyler and his new boyfriend Spencer all went and it was a lot of fun. They have fun and silly rules that help earn more money and it was just a excellent break from reality. One of the rules is no phones unless you are taking a picture, so I only have a couple pictures, but it was nice to not look at my phone for 2 hours. Ran into some friends there too, one who surprised me with some very kind words.

Didn't win anything but got the bird hat thanks to Tyler and Spencer

We got the Flamingo hat for my mom 

My dear friends Clay and Elise got married over the weekend as well and I was so honored to be able to not only celebrate their love, but that I felt well enough to go and help do some things for them that night. I stepped into wedding cordinator mode (I didn't know many at the wedding so I thought I'd be useful) and I realize how much I enjoy party planning and leading. I really did like doing it all, especially for people I care about and have given me so much. Lets just say it was a perfect and flawless wedding, and the bride looked beyond stunning and the groom cleaned up nice. Gave me some hope for there really being true love out there. Makes me want that for myself, one day.

The stunning bride - sad we didn't get a picture with Clay as well though. 

Life has definitely been eventful in many ways and I may have some down days, but that just is temporary and then tomorrow is a new day and things change. I can only control what I can control, and some days it's easier to accept than others. I am so happy that I am tolerating treatment enough to still be out and about, not everyone can say that. And as always, I am beyond thankful and humbled by my army of supporters, far and wide. I can never say it enough but you mean the world to me.

And just because they have my heart.

And as always I have rambled on and on and made a giant lengthy post. Oy, you all are troopers!

oxoxox