"So, what's next for you?"

I have gotten that questions about 5 times in the last day so I guess I need to clarify what exactly is next for me. 

In my last post I talked about scan results and the new tumor in my neck. Although this is new information it didn't change my treatment plan for now. I am still on the at home chemo which is the BRaf inhibitors. I take meds twice a day at home and don't go up to the hospital for treatment for now. We do monitor my blood work closely though - make sure my liver is behaving, my white count (nuetropenia levels) and my cancer growing marker (which is coming down thankfully.)

As of right now I have blood work this week and they will be discussing me at tumor board again this week. After that I have a follow-up/more blood work on May 2nd. 

I am still on the pain patch, though we are working on lowering the dose and moving to just breakthrough meds. My pain is very minimal now which has been nice. My fatigue has improved and I can make it through the day without a nap most days (though there is a lot of being lazy.) Eating has improved drastically over the last week so I hope to stabilize my weight and hopefully stop losing more weight. Never thought I would be wishing to stop losing weight... Cancer does strange things to you. 

Yesterday was Easter and I enjoyed a brunch with some friends and then a good family dinner. 

Cousins
*you can see my new tumor poking out, basically looks like a small Adams apple

This is a picture of one of my favorite kids (well he is 18 now...) and on his lacrosse helmet he wore my initials. Pretty amazing guy. 

Tony Boutwell

Port Access

A lot of people ask how my port works so I decided to film it getting accessed and a blood draw. It doesn't hurt and is extremely simple and helpful. For anyone considering getting one, do it! Definitely one of the best decisions of my cancer fight that is for sure!

Link to YouTube video

Catching a cold

Yep, I caught a cold. Doesn't seem like much but when your body is compromised it takes a bit of a toll. Because of my liver issues in the past they wouldn't let me have any cold meds so I just lingered through the first week of it. And to my delight my liver has been normal for the two weeks after treatment so I got cleared to take meds. Here's hoping that they help and get this sucker gone!

But yep you read that right, my liver is behaving which is awesome! I'm 2 1/2 weeks out from my first treatment so that is good that it isn't hitting me. With the cold I don't know whether or not I have side effects so we will see with this next dose which is on the 28th.

My hair has definitely started to sprout which is great news for me. I am excited to have it come back in and not wear a hat or scarf everyday. I'm thinking a few weeks.

I've been pretty mellow and not been doing much so there isn't much to report, besides sleeping a lot and lounging. Hoping this cold gets moving and I can start doing more with my days.

Feb 12

Feb 19

I know it doesn't look like much but it is starting to come in!

Scanxiety

The never dull life of a stage IV melanoma patient...
This week I had my scans and appointments and chemo scheduled. I don't know if I have been as anxious about scans as I was this time around just because it holds some solid weight in what the next options are. Although I have been feeling alright with things and haven't felt any new tumor growth in my neck, you never know with the rest of your body.
I was able to get down the nasty contrast they make you drink and was able to do the scans without problems luckily.
My appointments were early the next day. Turns out that I am stable again which is great news, just besides my brain. There is some toss up as to whether my first brain tumor hemorrhaged or is just flaring from the treatment, but either way is larger. I am not having any side effects in relation to that so we will just continue to watch it closely. My lung nodules are the same size if not smaller and then my neck has just one area that we are going to biopsy to see if it is tumor or scar tissue. It is around my parotid gland. With all this news we decided to no longer do the current chemo regimen and switch to Keytruda (Pembro). This is the drug that Jimmy Carter was on and has kept him in remission for almost a year now. We have avoided going on this because of my sensitive liver but the doctors say that hopefully since resetting so many cells that it wont be as sensitive now but we will continually check my blood levels and see where we are. Keytruda is also the very last approved treatment for my cancer. After this it will be me going back to other options or adding clinical trials to the mix. My insurance is pushing back on it right now but we are hoping to get it approved and start treatment next week.
Although I am excited to see how Keytruda works for me I am also very nervous about my liver and this being the last option technically. Just puts worry into my head. My liver now is great and actually low so that is a good starting spot. I will be happy to get my hair back too, can't wait to see the little hairs start growing again! I should also feel pretty good on the treatment in comparison to chemo so it makes me hopeful that I can begin working again and just getting back to life. Chemo life isn't so great, it's a very tired existence! The treatment is given every 3 weeks by outpatient infusion and I can be on it for up to 2 years. Treatment option #12 I'm coming for you!

Monday also marked one year since Mandy passed away. Definitely a bittersweet weekend and day. I had dinner with her mom that Saturday and then was at the hospital on Monday when they came to do a pay it forward to the people on the 4th floor. It was so great to see them all and get hugs on that day in particular. They have been so great in my journey that I just can't imagine it without them. And I really can't believe it has been a year already. I am planning on getting some glitter nails or something done this week to just have the reminder of that sweet girls smiling face (and now that I don't have anymore chemo planned I can have them done again! Who'd ever think you shouldn't get nails done if you are on treatment?!)  Love you Mandy.

As for the rest of my life there isn't much going on. I have been trying really hard at eating and keeping weight on but it has been really hard. I lost another 5lbs in 3 weeks. While I am loving shrinking and all, I know it isn't a healthy weight loss so it isn't ideal. Also there is a high chance of steroids in my future so I can't get too used to this smaller figure. Things just still aren't tasting like much and then things I liked 2 weeks ago aren't good now and it is just weird! Still working hard on it though.
I am also trying to get my second bedroom/storage area all situated and organized. I am completely a hoarder that doesn't know what to do with some things. Lets just say a WHOLE lot has been donated!
I got some fish ... then they all died... so I got a single betta. Gus Gus is doing good so far, almost 5 days in and going strong!

Also it is the last day to order the #melafreakinoma shirts from booster.com/notjustskincancer  they are so dang comfy that there has been 4 or 5 people ordering doubles! Yay for awareness and comfort!

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

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.