Lazy days

Man have I been pretty lazy lately. 

This last chemo has hit me a bit harder than the others in the fact that I have had a good amount of bone aches and just overall exhaustion. I could lay on the couch pretty much all day but try my best to get out of the house at least once a day. There has been a few days without that happening and I'm perfectly ok with that. It's hard to know if it is just low white counts again or if I am going towards anemia. Only way to know is with the blood tests and I don't have those again until Tuesday. 

Eating has been really hard lately as well. The things that sounded good these last few weeks don't sound good anymore and then there isn't much else that has taken its place. I have been craving shrimp a lot though. A friend mentioned it may be because I might need the iron or something, totally understandable if so. I am trying hard to get a good size nutritional shake in each day so that I have some vital nutrients in me. I still throw up every morning (minus a couple mornings this week) so I will be excited to be over that phase. 

Tomorrow I have a neck ultrasound to see if I still have any remnants of a blood clot in there. I truly hope I do not because I'm pretty sick of giving myself blood thinner shots twice a day and I'm pretty sure my stomach is sick of it as well. I will say I've gotten pretty good at them though. So weird to think I am good at that... my life is weird. 

Now the big stuff is on Monday. Scans. These scans will show whether or not we will continue on the treatment we are on or if it isn't working. If the tumors are stable or smaller, we stay. If they are bigger or there are new ones, then we go to the next option. The next option I have no idea what that is. Makes me very nervous to think I am coming to the end of not having many options to try, makes it all a little too real. People have asked how I have been feeling about these scans and I really can't say clearly that I think they will be ok. I hope I'm wrong and that things are working and all this really hard stuff I've been doing since October has been worth it. We will find out on Tuesday. If all is well I will get chemo #5. We shall see.

Last week I went with little Ruby to her infusion of Nivolumab (Opdivo) so I could see what her day looks like. Man, they need to redo the outpatient chemo/infusion center over at Primary Children's Medical Center. It was such a rough and crowded room to be in and it just needs windows or something. I don't know. It made me even more grateful for my insanely nice infusion room. She was a champ though and has handled things so well. That little girl just makes me fight harder just cause she is fighter more than she even knows. She knows she's sick, but she's been very lucky to not feel it. I hope this for her always. I want this drug to work for her so badly. 

As far as fun stuff that has happened, there hasn't been too much. I try going out to eat mostly but it is hard to find things that sound good to eat - but I still go! That's usually what I end up doing to get out of the house. My energy doesn't allow for too much more than that, but it is plenty for me. I love my social time! I am trying hard to get my random second room in my place all put together, but man I have held onto some random stuff that is for sure. I think I'm making head way though. 

I'll also just say this as well - I will miss President Barack Obama. In just a week since our new president so many things are in the air and it's amazing the level of comfort Obama gave me in regards to my illness that I can feel is threatened now and it just makes me sad. It's amazing how one person can change a whole outlook on things. I wont go into detail because, well, it's too much for me, but I am hoping to not have anything hit me too soon as far as the healthcare stuff goes. I already have my hands full, hoping to not make it be more. I'm barely lucky to have insurance right now (that's a post I decided to not write because it is just too much.) Anyway, here's hoping that whatever they propose it will take some time to go into effect. 

This wasn't a very uplifting post - sorry about that! I've been pretty mellow these past few weeks so not much to write. Hoping for some good news to write on Tuesday! 

oxoxo

Oh, my shirt is relaunched again as well until February 2nd. go to booster.com/notjustskincancer if you want one! 

2 hard years down, still fighting

Well soon to be 8 years total. Today marks two years since I was told my cancer had returned with great aggression. I received a phone call and pulled to the side of the road, it was a Wednesday night around 6:30pm. I know exactly where I was and knew this isn't good. I cried so hard that night and many days to follow.

In those two years I have fought so hard. I have had two major surgeries. I have had more scans and tests and blood work that I can't even keep track. Numerous biopsies. I have tried all but one of the approved treatments for my cancer (outside of clinical trials.) I have lost my hair twice. I have lost, then gained and then lost 30+ pounds. I have spent many nights in the hospital. I have fought with insurance too many times, but luckily have always come out with them by my side. I have formed friendships through the hardest of times, us facing the hardest battles of our lives and have lost one too near and dear to my fight. This hasn't been a fight without dark times. I have lost my smile more than enough to be proud of. A good cry is necessary, you just can't stay there or else the cancer wins.

With all that I have endured, these two years have been great in their own right. I have strengthened friendships that will last a lifetime. I have traveled and explored all different places because, why not? I have moved into my own place and settling in. I got fish today. I have realized that my beauty isn't just in looks but that my internal strength shines through more than a glimmer of makeup. I have embraced the small dumb stuff because that's what makes me happy and makes the world what it is. I have learned that people are better than things and traditions are worth making. That a surprise coffee or treat to someone you care about will make you happier than a new outfit (that should be a given though). I learned to enjoy every meal because you never know when that exact meal will be so hard to eat and taste like absolute garbage (still working on this...) Enjoy that glass of champagne because it may be the only one you're allowed to have (stupid liver) for a good month or two. Hug people and tell them why you have them around cause you don't know what tomorrow brings for either of you.

I'm two years into the hard battle, and who knows how many more years I will be given to fight. All I know is that I will make the most of it all to the best of my ability - with lots of naps in between.

I appreciate you all being along for this crazy battle and fight and cheering me on each step of the way. Your love and support mean so much more to me than you'd know - and I can't say that enough. From every text message, surprise visit and the insane monetary and time donations you have given - I'm still in awe. I'm still in the fight and am glad you're with me.

Neulasta: On Body Injector

In my last post I mentioned that I had the Nuelasta on body injector - well I want to just tell you how it went.
First off it was just kinda weird to go home with something on you with a countdown to when it would inject. Didn't know if it would hurt, sting, be loud, who knows!

Well, when it is getting ready to start it begins beeping. After that is done it begins clicking and injecting and I couldn't feel a thing. This happens for about 35-45min and then it does a final beep and then it is done. I waited another 15 min just to be sure before removing it. When I removed it I was surprised to see the small catheter/straw that was injected at the beginning and it was pretty fascinating. Crazy, but very fascinating.

Right after it started to beep at me... 

Don't mind my bruised gut/belly, you can't really hear the clicking but it is going/injecting

Small Catheter/Injector

So I would suggest it over going back to the hospital for your white count/bone stimulant shot if you can get them to approve it. And I hear it is the same price as the shot, so there's that.

Chemo #4: Check

I made it to the minimum number of chemo treatments they want me to do - ideally I will make it to six. Going into my appointment yesterday I was a bit nervous because I had been feeling super sluggish and just all around exhausted and sleeping terribly. I was worried I was anemic and if I am anemic that means no more chemo. It's a weird place to be in when you are sad if you can't get chemo. You are fighting to get something that is poisoning you. Anyways, turns out I am not anemic but that my white counts just never fully recovered after dropping on the last round. Much easier to manage than being anemic.

Chemo went well yesterday, my nurse was on top of things and got me done in record time. Because my weight has dropped they had to adjust the dose accordingly and then they dropped it another 10% to help keep my white cells from dropping too far. If they go too low I will become nuetropenic again and have to go back to the hospital. No thanks! We also added Nuelasta which is a count booster that is given 24 to 48 hours after the chemo. They now have this fancy on body injector that they apply to your body during chemo and it will inject you with the drug after 27 hours. Fancy, high tech medical stuff. So I have a machine attached to me with a catheter already inserted just waiting for 7:45pm to inject. So, so strange. I'm interested to see how it feels. Applying it wasn't bad at all, felt like a rubber band snap and was really quick.

I am planning on laying low for this round, trying to not over do things and expose myself to too much. We have had a nasty flu and sickness going around and I can't risk catching it. Plus my pretty red couch needs me! ha!

Also, I am relaunching my booster tshirt campaign in the next day or so because I guess there are a few people who wanted shirts and missed the deadline just fyi! I'll post the link when it goes live.

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