Pioneer Day

Here in Utah the 24th of July is a state holiday. It is a day we celebrate the pioneers reaching the valley after a trek across the plains. Basically it is just like a second 4th of July. Which is great. I love fireworks so to get two days in one month to do them makes me happy.

Today was a full day and I definitely have been overdoing things. By the time I made it to the bbq I was spent, physically and mentally. It was good to see family and friends but dang my body isn't too excited with the heat and the busy energy prednisone/steroids makes me think I have.

Tomorrow is a new day and I am going to lay low and listen to my body like a good girl (I've been getting a lot of crap lately for being too on the go...)

As for now, happy Pioneer Day or Pie-n-beer day as it is also known.

My dad knows how to do a firework show - best home show around

35 for 35

About two months ago I was given the "assignment" of making a list of 35 things I want to do or accomplish before I turn 35. You can call this a bucket list persay, but I think it is more like a "to-do" list with a bit more time than usual. I tend to make to-do lists all the time but they are more so for a week or less of things. And I took a more practical route than a frivolous one...
Let me tell you, 35 things is a lot to come up with especially when you have to be able to get them done by 11/2017. And you have to be reasonable.
Here is the sloppy written one...

Now as I am re-reading them they are kinda not so exciting and thrilling, but keep in mind that my life has been pretty stagnant for the last 2 1/2 years so some of these things will take a lot of effort! 

Here's the list:

1. Travel 3+ places (since there is a time limit I was only allowed to list this as one thing... the list of places are to the right on picture. Already have Yellowstone planned for August, more to come for sure!)
2. Be in own place
3. Working full-time, only one job
4. In maintenance treatment or no treatment
5. 1+ credit cards paid off
6. Living a (more) active lifestyle
7. Date more/at all
8. No more storage unit
9. ALL medical paid off
10. Go to Inauguration (Democrat)
11. Reduce soda drinking - only cocktails/movies
12. Fix car
13. New phone
14. Read more books - 2+ year
15. More extended family time
16. Get "ready" more
17. Become more paper-free
18. Don't always say "Yes"
19. Be more selfish - do things for myself
20. Do more random acts of kindness
21. Frame/display pictures
22. Get off as many meds as possible
23. Go to regular therapy
24. De-clutter/hoard my life
25. Eat healthier
26. Look into/start talking at high schools/junior highs
27. Get sunscreen to hand to homeless
28. Get involved in Melanoma run
29. Cook more
30. Entertain more
31. Feed the giraffes at the zoo
32. Equine/Horse therapy
33.  
34.  
35.  

The ones with a strike-through I have already done/accomplished. And a few of them are in progress/on there way. 

Now for the last 3 I guess I ran out of ideas for the time being... Financially there are restraints as well obviously so that puts a hindrance on some options. But I'm open to (reasonable) suggestions! Fire away my friends! 

Staycation

I spent the week up at Snowbird, a ski resort that is open in the summer with activities and such. My best friends own a week long timeshare there and are so gracious to allow me to crash with them for the forth year in a row. Every year it has been so different as so much changes in a year.

It is so great to just escape the valley and heat and reality to a serene beautiful mountain where you can just zone out, go swimming, watch for animals or just hang in the room.

Top of the tram at Hidden Peak - 11,000ft; Salt Lake Valley straight ahead (Top), Heber (Bottom)

Jack is snorkling his heart out in this picture right above my feet

Morning routine

The view outside the room

As the week approached I didn't know how I would feel or where I would be in treatment. Orignially when I was on the Niv/Ipi combo I was scheduled to get my infusion half way through the week so in my head I was going to only be there for a few days. Obviously that has changed and I was able to stay the whole time - not sure they were truly expecting that but I did it! I only had a couple days and moments that I struggled but was able to pull through it. I used the spa pool and solarium a couple times and just relaxed and thought through things. My friends are crazy busy and have multiple small business constantly going so they had to come down to the valley almost everyday so I used that time to just relax and recoup. It was fun to watch their two boys enjoy their time on the rides and just be boys. They are getting so big and becoming their own little beings. It is fun to watch and just live in their simplicity.

Tell Jack what a selfie is...  

Ben and Anton in the room hottub loving life! 

  

Popsicles, SpiderMan, Selfies and Movies. This kid has my heart

We had groups of people come up practically each day/night and so that kept things lively and not so stagnant. Heading into the week I was worried I would hold back my friends from really doing things up while they were there since my stamina is non existent, my sun sensitivity is back and I'm extremely low on funds (I couldn't do the rides even if I wanted to anyways...) I don't think I got in the way, but I will never know for sure. Prednisone was a factor I know that, I ate everything! Ha! I told my friend she shouldn't have left me alone during my witching hours of 3-5pm... the chips just disappeared I swear! I am doing better at regulating it all but it is still a bit out of control. I'm hoping that once I taper lower I will see the water weight drop off and then I can work on the chip/treat weight.

My sungear in full effect! 

Yes, this happened. Ha.

At the pool in the shade, under an umbrella. Also, where is the tumor? 

My life isn't that bad if I step back and look at the giant picture. I just spent a week at a resort with my great friends because they are that nice to include me. When I started to have a meltdown, I went to a spa and stared out a wall of windows to a mountain side that had a family of deer on it. I was healthy enough to go for a week and enjoy as much of the time as I could. I watched two little boys enjoy all they could and play and swim their little hearts out. I spent time with my friends that I don't see too much cause our lives aren't intertwined as they once were - I miss those times but know that these times are just as important and have their own value. Was it hard to realize that I am now on the sidelines for real? Yes, but that doesn't change how I care about them as my friends and it just makes the memories a little different and may take a little more effort. They are worth the effort. Again, my life is actually pretty good, I just have this whole cancer bullshit to slap me down a couple times.

I am thankful for what I have, and for my staycation.

Good night

I just finished reading on a balcony on the middle of a mountain listening to the stream. It is the end to a full and good day, good night.

Craig Sager

This was a Facebook post and thought it needed to be shared here too... 

You know, cancer is hard. After a day full of ups and downs and a steroid induced meltdown the last thing I wanted was to hear the word cancer. But as I turned the channel it went to the ESPYS and right to them honoring Craig Sager - someone I didn't know of. Lets just say his video and speech reminded me of what this battle is about and how I want to approach it. One day at a time, and one goal at a time. If you have the time to watch the full presentation, do. If only the speech then that is enough. You don't have to have cancer to live life like he is. Take everyday for what it has to offer, and start over the next day. That's what I am trying to do. Again, one day at a time. ‪#‎melafuckinoma‬ ‪#‎melanoma‬ ‪#‎melanomaawareness‬

http://www.huffingtonpost.com/entry/craig-sager-cancer-espys_us_57869afae4b03fc3ee4f12f2

Ups, downs and meltdown

Sometimes I have to just stop and breath. That is what right this moment is. It's crazy how one day can hold so many emotions. Here's my day. . .
I am staying up at Snowbird, a local ski resort that is open for summer and my best friends have a week timeshare. It is a staycation about 25 minutes away and seems like a whole different world. You escape the heat of the valley into mountains and beauty. I am lucky enough they let me come stay the whole week, I'm sure there are days they want it to themselves though. Regardless it's the 4th year I've joined them and I look forward to it each year. Today I planned on heading to the valley to meet some friends from out of town and then I got a call to look at an apartment. As I got ready I could feel that things would go one of two ways... Good day or a steroid rage day. Definitely was heading for the latter.. I drove down the canyon and had to check myself because I was starting to just get annoyed at the drivers for no reason really. Then the apartment was pretty awful. Then just didn't feel great and had to fill time until meeting friends. By the time I met the friends I was drained. Luckily once they got there I got a second wind (the sugar high didn't hurt either) and was able to really enjoy seeing them.
After that I drove back up the canyon and just was overwhelmed. So many thoughts and things were just racing through my mind, I couldn't shut my brain off. Once I got back to Snowbird I needed to just stare into nothing, not talk to anyone. Luckily they have a solarium/quiet space I could take advantage of and I sat up there for an hour. It helped calm me down a bit but the thoughts still just came rushing in. Headed back to the room and my friend could see through the fake smile and I just lost it. Today I was just done once it is all said and done. I had my cry and then took a nice shower. Thoughts slowed down and I was able to relax on the couch.
I then turned the channel and there was the Craig Sager speech (next post) definitely not what I wanted to hear at the moment but definitely what I needed to hear.
Now to bed. Today is done. Tomorrow I can start fresh. Sometimes one day at a time is a giant feat. As in today. And sometimes you just need to actually let people see you in the breakdown. Be human. On to tomorrow.

Shrink Fest

We are now 6 days into my new/old treatment of the BRaf Inhibitors (Zelboraf and Cotellic) and I am happy to say that they are shrinking the tumors as fast or faster than last time. I know my tumor was obviously much larger the last time I was on these but it is pretty amazing to see it work right before your eyes.

Here is a timeline of pictures to just show you how fast they work. 

7/7/16 Day one (took the first pills that night)

7/8/16

7/9/16 AM 

  7/9/16 PM (13 hour difference from the left)

7/11/16

So here are the pros and cons ...

PROS:

These drugs are truly incredible if you think about it. They attack the tumors literally instantly and you can see them disappearing before your eyes. They have minimal side effects and make me feel like a normal human without a constant reminder that I'm sick. The pain relief has been so great too. I haven't had to take a pain pill since Thursday 7/7 during the day which is great (minus scans cause I had to lay flat...) and then I have started to reduce my nerve meds as well. 

CONS:

These drugs are false hope. They are a temporary, bridge treatment until they stop working. Nearly every person on them will hit a plateau by month 9 and then growth will reoccur. 

I wish with all my being that these were permanent and that this excitement of them disappearing before my eyes was a permanent result and life can begin to head towards "normal." It is hard to tell people that yes this is incredible and looks like I am doing amazing but don't get your hopes up too high because we are on the roller coaster right now, highs and lows. For now I am enjoying the highs of it, and the lower pain. It is a day to day ride and for now I will be grateful for the progress I have in this moment. My neck is going to be back to "normal" in days which will be great - no visible tumors in a week I would say. We shall see! 

Care Package

My amazing best friend who lives in California sent me the sweetest and most thoughtful care package.
She is a school psychologist and had her kids all make me handmade get well cards. They range in ages but they are all grade school so they were pretty funny ones.

Knock-Knock jokes and all!

He also said he loves turtles on this card - and cheddar Pringles of course

So sweet

These warmed my heart. Some said that they hope I get out of the hospital soon so they must have made them when I had been admitted. There is something in having "Stay Strong" and "You Are Brave" written in little kid hand writing. Just so pure and simple. 

My best friend truly is the best. 

Scans today

Today is scan/restaging day.
Whenever you change treatments they like to have new scans so they can have a new place to compare progress to. My scans were originally scheduled for later this month so they got moved to the next available, which happens to be a Saturday afternoon. Had some other plans, but that's the life of a cancer fighter - plans aren't really a thing. You can try but you always know that something may alter the plans or you will wake up sick as a dog. You never know.

I haven't really thought much about these scans - the anxiety isn't really there so much. If I'm being 100% honest I wouldn't be surprised if it has spread somewhere else, but I don't like to think that. I have been so lucky to have it stay localized that I just wonder how long that run will last. I truly hope that thought isn't true but it's always a possibility.

Scans never used to get to me. It was just something I did every 3 months, then 4 months, then 6 months, then a year. Now back to 3 months (or more!) They came back clear for so long that I just got used to it. Now I know there are tumors (just my neck) so I know they aren't clear but they could be worse. Now I either have major anxiety or none at all. So strange.

On a good note, I started my new/old treatment on Wednesday night and now on Saturday I can see a noticeable difference in the tumors sizes. Smaller and so much more comfortable. I haven't taken a pain med (besides ibuprofen) since Thursday, which is huge. I was to the point I was talking them every 4 hours on the dot. So great to have relief. I'm still not fully pain free and sadly will be taking a good amount of pain meds for my scans since I can't lay flat without it freaking out... Having my sister give me a ride today which is new. I usually go these things solo, but taking pain meds I don't want to drive. I'm being smart - asking for help. Strange I know!

In prednisone news, the water weight and moonface kicked in yesterday. Woke up so swollen. I took some pictures out with an old friend and it took all my might to not be devastated looking at the pictures and how heavy I look in comparison to a week ago. The steroids make you ravenous and literally uncontrollable urge to eat everything in site. It is unreal and so hard to curb. My witching hours are 3-6. That's when it hits the hardest and everything in site needs to be tried. I have done my best to have sensible snacks around but man it is hard! I know water weight will go down once I stop the steroids, but the added weight from the ravenous eating won't be so easy. Really trying to control it. I am down to 80mg (started at 120mg) and will continue to taper as long as my liver enzymes continue to lower. At this rate I will still be on them in 5 weeks. Talk about a summer of roid rage! I will learn the tricks to deal with it, just have to work at it all. I do like the energy it gives me, even though it is false energy. I don't like when it is crazy anxious energy though, that's happened two days this week. Not a fan. Also it affects my sleep so now I'm on sleeping aids, necessary evil. I haven't talked to Oprah or slept are/drive or anything which I'm taking as a win. Each day is different.

Random exciting other things:
Going to Yellowstone in August and am really excited
I am looking for a place to call my own. Renting, looking for ideally a 2bedroom place. Keep your eyes open for me - no apartment complexes though.
I'm going on a staycation to Snowbird tomorrow and am making some fun treats for us to have (prednisone driven...) I get excited to cook when it is for other people. Planning on making smore bars and a tasty fruit tart. Yum!

Hope this weekend finds you playing and laughing and escaping the sad news of the world. This life is tough but it has so many little things to be so grateful for. Like making a fruit tart for friends - which really boils down to I am happy I have the energy to make something, that I can make it, that they will enjoy it and that I enjoy them enjoying it. Little things.

Oxoxo

Pool Day

Today was spent relaxing by the pool with a friend that I literally haven’t seen since 8^th grade. We grew up down the street from each other and then lost touch as we got older. Thanks to Facebook we reconnected and then thanks to my illness and some other factors we truly connected in the real world. Although so much has happened in our lives since 8^th grade, we are still so similar and parallel in ways. She has been a great support for me as she’s been in the patient role as well and knows the frustrations and ups and downs. It is different when people know what you mean when you talk about some of the medical things. She also is extremely healthy and is helping with my steroid cravings and just overall good health – I promise I am trying my best to follow suit!

Her husband is an uphill runner. Why that is considered fun I have no idea at all. Literally I was mind boggled asking him questions about it. He legit just runs up mountain sides to peaks – runs. He had a race up at one of the ski resorts today so we came up to relax by the spa pool and catch up on our chats and then watch him run. The pool was great, we stole half the umbrellas like vampires and just sat and relaxed and snacked and talked and it was really good for the soul to escape the valley for an afternoon. We then rode the Tram up to the peak to watch him finish his race. He took second place by barely a few minutes and still was jogging up the last part, which was sand mind you. He had no idea we were going to meet him at the top so he was pretty excited to see his wife there cheering him on. It was the first time I met him and so it was a pretty memorable meeting if I do say so myself.

As I was driving home I just kept thinking how crazy this life truly is. If 20+ years ago I could have thought forward to where my life is now I would never think even a quarter of it would be the way it is. You can plan all you want and have these ideas in your head of what you want or what it will look like, but nothing goes as planned. Life throws you curve balls and you turn in ways you didn’t think you would, for good and bad. But it all turns out. Although it isn’t the life I ever imagined it would be, I still am grateful for where I am and the people around me. Even with cancer it isn’t all bad.

Selfie at Hidden Peak, Snowbird, Utah

I mean really, does he look like he just ran up that mountain in an hour? Amazing.

Sporadic selfie 

MEDS

So I have been asked how many meds I take a day... Well with the new meds it is a lot as it adds 9 pills a day. I decided to show you exactly what I take.

Here are my AM meds.

They are as follows: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Ibuprofen 800mg - Pain

Gabbapentin (2, 600mg) - Never Pain

Personal Pill

Allergy Pill

Thyroid Pill - Caused from the immunotherapy

Prednisone (4) - Currently on 80mg down from 120mg

Stomach Coat Pill - Due to the Prednisone dose, to protect my stomach

Pain Pills (1 1/2) - These vary per day, and multiple times a day

NOT PICTURED: Mid day meds: Gabbapentin (2, 600mg) and another Ibuprofen 800mg. If pain is climbing I will take additional pain meds too although I try not to

PM Meds: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Gabbapentin (2, 600mg) - Nerve Pain

Pain Pill (1 1/2)

Cottellic (3) - BRaf Inhibitor/Chemo Drug

Personal Pill

Sleeping Pill

Probiotic

So, lots of pills. Since my liver situation is still so high, all but my nerve meds all process through my kidneys. For now I can't take anything else that will process through my liver such as Tylenol so I have to be careful. Before the liver situation I had two additional meds I took as well... so many meds! The life of a cancer patient is what I say. As the pain decreases with the BRaf inhibitors I will be able to reduce the pain pills, ibuprofen and nerve meds. I'd like to get down to as little amount of prescriptions as possible but that will take some time, but that is always the goal. Lets just say they know me at the pharmacy. 

Day One, Treatment Option 6 aka Treatment Option 4 act 2

Today is day one again. I have started the BRaf inhibitors once again so that I am on a treatment while we wait for some other options to be available. I am eager to see these start working as fast as they did the first time around and get some pain relief. Like I mentioned in the last post, it is getting a bit uncontrollable.

I had my liver checked again yesterday and the enzymes are coming down still, just very slowly. One is 118 (3x too high) and the other is still 400+ (supposed to be 60). They are coming down which we want but the longer they are up the longer I am on steroids. I know I am complaining a lot about the steroids, but man it is something else! Yesterday I was wired and in my form of "roid rage" for sure, just uneasy and buzzing. Don't like those days.

Scans/Restaging has been scheduled for this Saturday (exactly how I want to spend my afternoon) so here's hoping that things are still localized in my neck. Scanxiety is a real thing, and I am blocking it out until that day. Which I have realized I will have to have some sort of sedation for since I can't lay flat for that long without my neck burning a hole in my head... That should be interesting!

One thing to mention - I am sipping on a cup of coffee. Sounds mundane, but since my surgery in 2015 my body just doesn't want anything to do with it. I have tried a couple times to revisit it, but no luck. I am trying again today, it actually sounded semi good. I have a quarter of a cup, we'll see if I make it though it! Ha. Little things.

Happy day one x 6 to all my lovely followers - I am learning I don't know many of you! So fascinating!

Summer funk

People tell me a lot that they just don't know how I stay so positive when I'm in the middle of such a shit storm. Well some days it isn't easy. The decision to not live in anger or frustration is somewhat part of my personality but I just don't like that feeling so I run from it at all costs. Dealing with cancer is just one of those things. That said, these last few weeks have been hard. I can feel the effects of cancer practically all day and it is beginning to affect the things I do on a regular basis. My neck has multiple tumors and for some reason they are constantly pressing on nerves so that means constant pain which means constant meds on a schedule. I try to not let people see the harsh reality of the pain but it's getting hard to hide  

And then there is the steroid situation. Steroids right now are a necessary evil. Due to my liver toxicity/autoimmune hepatitis I need to take them to bring the enzyme levels down. Steroids have many side effects that have their ups and downs. The up is that they give you energy, but sadly it is false energy so you end up wearing yourself out more than you would normally. If you don't use the energy you feel kinda "buzzed". They make me pretty shaky and the heat makes all the symptoms worse. I went to a bbq yesterday and just being out in the heat made me extremely exhausted and so so shaky. It felt a lot like dehydration and/or heat exhaustion. Had to take a few hours to recoup. I just feel really physically weak. 

Like I said I don't like to notice and remember I have cancer - I don't like falling into the "cancer patient" roll. Too real. I want to enjoy my life as it is and not be reminded constantly that I'm sick. 

Anyways that is my rant for now. I just want to live it up this summer and really would like cancer to step aside.