Week 4+

I don't know how time has been flying so fast. I want it to slow down, especially since I am now on limited time. I have tried to keep busy but have gotten to a point that things are just too exhausting and so I am staying home more, which I am ok with if it wasn't so dang hot. My swamp cooler just can't keep up with the heat and I end up just sweating like crazy. No fun.

Medically there are a few new things. I am not on oxygen 24/7 and I can tell a big difference in how I feel. I have portable tanks but they have proved to be hard to lug around so I don't venture out too much with them. I also am retaining/producing a lot of fluid and had it all drained off a week ago. They pulled off 6.6 liters/14lbs of fluid. To say I was uncomfortable going in is an understatement. I looked easily 5 months pregnant. I have built up almost that much again and am schedule to have a permanent drain placed tomorrow. It will be good to be able to drain at home and not get to this uncomfortable point. Not looking forward to the placement of it, but it should be quick. The fluid buildup is just a sign that my organs aren't working how they are supposed to, that things are progressing and not in a good way. This is when I know too much and try and not get my head too wrapped up in it all.

I have had a couple get togethers with friends and family so that is nice, but like I said it is proving to be too troublesome and uncomfortable to do that anymore. So now I welcome visitors on my big red couch and we have good conversations and maybe some food or drink.

Here's the photo recap of the last week or so:

Officially on Oxygen

My old school crew visiting at the farmers market

Morgan; one of the many who have made the trip out to see me

6.6 Liters of fluid/14lbs lighter

 

My best friend forever 

My godbabies and whole heart

Got them "A" bracelets so they can remember me, still a bit big but they will grow into them 

Also my #melafreakinoma shirts are still available for 3 more weeks booster.com/melafreakinoma3 or I have a new one that's for Reckless Optimism booster.com/recklessoptimism Both help fund my end of life care as well as my celebration of life. My GoFundMe is still open as well gofundme.com/neverquitalexis

oxoxoxox

Week Three

When you are told that you have limited time, and know that as a truth, you want to do as much as you can and see as many people as you can as possible. I have been trying to do that ever since I was given my timeline. Well now things are getting a little more real, my body is slowly slowing down and so with that means I have to slow down.
I am close to needing oxygen daily and I have a fear that I am retaining fluid in my lungs and/or my abdomen. I will most likely be going up to Huntsman tomorrow to have both of those issues addressed and we will see what happens. I am scared to go to the hospital now as I don't want to be stuck up there for silly reasons and sometimes they keep you for silly reasons. If I have fluid, then I want it drained and sent on my way. If I need oxygen, same thing. Give me a portable tank, please. I bought a pulse oximeter and my oxygen is sitting at 92 (should be high 90's) and then drops down into the 80's at rest. My heart is really working overtime though, with a resting heart rate of 106ish when it should be in the 70's. I also have been throwing up almost daily and can't really pin point what is triggering it. All of these things make all of this too real and kind of slaps me across the face. It makes me realize that I'm not in control even though I want to be. And that is what scares me.

All of that said I have had some good times this last week. We had a giant party in my honor and it was a lot of fun. I requested that everyone bring an appetizer/dessert/treat from a Pinterest board I made. Man was the food amazing! Not one Pinterest fail! So impressed. We had all my favorite drinks: Hennessey and Coke, Justin Timberlake's 901 Tequila, Sweet Tea Vodka, Korbel Natural Champagne and PBR. My friend had a photographer come and she got some amazing photos. Click here to see them all: A Party for Alexis

Besides that here is a photo run down of what I've been up to:

Just one of the amazing photos from the party, in my parents back yard

Shakeface!

 
I made my own Snapchat filter for the party!

A picnic up the canyon with Cate

Getting my toes wet!

Philipoom Family Time
Monroe riding on the scooter!

 

Bunco with a special guest!

My man at dinner

Canyon selfie

My Angels being piggies!

 

Market Street A Team!

Custom cake

Quality over Quantity

Yes, we have reached this point.

Ever since I returned from my trip to Portland I haven't felt very well. I have had extreme fatigue and weakness. I have been a bit short of breath, and the best way to describe it is that I can feel my lungs. They don't hurt, I am just aware of them. There is a slight wheeze in my deep breaths. I kept telling myself that it is just the Keytruda starting to work and maybe getting a little pneumonitis from the treatment (that's one of the side effects). I started to realize that something had to be off with my oxygen but when I went in for my second infusion (this round) and they would test me it would be in the normal range.
I finally called to tell them what my thoughts were and how I thought something was wrong. They got me up into the Acute Care Clinic (basically an emergency center at Huntsman) and started to do some tests. Again, sitting my oxygen was in normal range, around 96%. They then did a walking test and it dropped down to the 70's. This caused us to get a emergency CT scan. I already was scheduled for a MRI that day so it was just added to the mix. When the CT was read the doctor came in and said that there was definitely disease progression and that they had made an appointment with my oncologist for the next day and he would go over more. I knew that wasn't good. In my head though I thought that we would maybe hit it with some strong radiation or switch to something. Regardless I came up to the appointment the next day.
My team came in and we were talking about how there was definitely pneumonitis in my lungs and we would add my favorite thing, prednisone, to help take that away. Maybe pausing the Keytruda for a week or so to give it time to calm down. My doctor left the room for a minute and then came back in. Everything was different then. He said that he had sent my scans over to another Melanoma guy to look at and see what he had to see and it was what we all didn't want to admit. It wasn't pneumonitis, it was all disease with a small bit of pneumonitis. The cancer has grown substantially in the month between scans and has involved my lymphatics throughout the lungs and is growing too rapidly for any treatment to keep up. I have run out of treatment options. I am at the end of the line for things and we need to enter into symptom management, and I was given 6-8 weeks left.

6-8 weeks.

The tears started to flow as I realized what I was hearing and that we were to a point of deciding quality or quantity. I wasn't supposed to get here. We've never talked numbers. We always are optimistic. We had an unspoken understanding that we don't talk numbers because I will be the one who defies the odds. Tears were being shed throughout the room. He offered that I could do chemo again, but it would only add 2 or so weeks of life. And I would be sick. I don't want to be sick if I only have a limited time.
So here we are. I don't know what this looks like. I don't know how fast I will slowly fall ill to the side effects of the tumors and cancer taking over. Right now I feel good, look good. Prednisone helps with that. I can feel the tumors in my lungs are there, can feel that there is some progression in my bones and around my liver area. I know it's there. That is what is scary; I can't say that I don't believe the timeline.

Since the news I have been trying to tell people intimately but it is so hard and draining. I feel like the last few days have lasted a lifetime and all are blurring together. This morning seems like a lifetime away and my mind is just going a bit numb. This news that I never wanted to share is now a reality. It has already brought out some tough conversations, ones you have to have in these times. Has also brought forward the need and desire to see those I care about and hug them all at least one more time.

I don't know what this is all supposed to look like - all I know is I want to spend the rest of my time with the people I love, doing the things that make me smile and laugh and making memories. I have been so lucky to have been living out my bucket list for the past 2+ years that there isn't anything I feel I have to do. What I want is to be with the ones I love and care about. I will keep on doing things as I still feel well, and when I start to not feel well we will cross that bridge then.

For now I am right back to my motto along the whole line of this fight, one day at a time. One moment at a time, and truly one second at a time.

One day at a time.

LaterBlog: Huntsman

Huntsman Cancer Hospital and Institute is basically like a second home to me; whether I like it or not. For the last 8 1/2 years I have gone up there for all of my cancer care. Numerous scans, tests, appointments, laughs, tears, hugs, food, overnight stays, losing friends and loved ones, infusions, fluids, treatments. All of the things. 

When I started going there they had just opened phase 3 of their plan of the institute. This past week they finished and dedicated phase 4; Primary Children's and Families Cancer Research Center. It is an entire wing fully dedicated to research of children's cancers and genetic cancers, hoping to finally find the one find that will eradicate even one type of cancer. Genealogy will be put to work and I truly hope that they find the end to this horrible thing I have fought and lived with and watch so many fight. 

I was asked to be one of the guest patients to attend the dedication event. I was honored. We all were given flowers and talked to the media and had reserved seating for the event. The Mormon Tabernacle Choir performed and many very respectable people spoke; including Jon Huntsman Sr. himself. It was a great event. It also happened to be his 80th birthday so there was some celebrating happening as well. 

I happened to have my treatment that day as well. When the staff found out about that they decided that they would do my media interview during my treatment. Little did I know that Jon Huntsman Sr. himself would be coming to my infusion. He walked in and I was almost a bit starstruck. To put it into perspective, it is this man that I owe the comfort of my life right now. It is because of his vision and extreme financial donation and dedication that Huntsman is in my backyard - a nationally recognized cancer center. He has made it so I haven't had to travel hours for treatment and care. He has made it possible for the doctors and researchers to further advance in finding the cure for this disease.

He came towards my infusion pod and I stood quickly to give him a hug - only to have him say it wasn't necessary, but it was. We chatted just about my cancer and my treatments. He noted that he could tell my attitude was positive in the face of such negative circumstances. His granddaughter was with him and she is a news anchor for Fox and Friends and she noted that when she walked in the first thing she saw was my smile. Which made me happy. I thanked him for everything and told him my dad thanks him as well. 

It was all filmed but I haven't seen anything else from the day be published. I will post whenever they do as I am assuming they will be airing it soon. Infusion went as planned and I went home and rested. It was a big and good day. 

This dragonfly just was hangin out for about 5min during the dedication; representing all the people who couldn't be there in person since cancer stole their time

LaterBlog: Portland

Oregon is amazing. Period. 

My friends and I love to travel together and when it started lining up that we could all make Portland work, we did just that and made a unforgettable vacation happen. 

Four of us flew in on Saturday and got our rental car and drove up to Cannon Beach on the Pacific. It was stunning. The ocean there is different than in California and has a sense of calm and peace. It's misty and intriguing and just beautiful. The towns up there are quaint and homey. Welcoming. We stayed the night in Seaside at a cute riverside condo, got some amazing strawberries on the roadside, grabbed dinner, had more laughs than we knew what to do with, watched Goonies, went to the Goonie house; just made some great memories. 

The next day we went to Multanomah Falls (since we couldn't remember the name we kept calling it Melanoma Falls) and it was beautiful. The girls walked up to the bridge; my body wasn't feeling up to the walk. Tyler and Spencer flew in that night and we had an eventful night grabbing dinner. An old friend we worked with lives up there now and met us for a drink and it was great to get a hug from him and catch up. We walked downtown, some interesting people watching for sure. The girls got some late night Voodoo donuts. "Keep Portland Weird" sign The staples. 

Monday I was lucky enough to meet up with my cousin who lives up there for brunch. We had a great time chatting about our late uncle and laughing about good times. It wasn't until later in the day that Facebook reminded me that it was my uncles birthday. What are the odds that I'd be in Portland (where he lived and passed), having brunch talking about him, on his birthday. Pretty awesome universe. We hit up Powell's books, some more donut places and then a really great happy hour in the city followed by some tasty ice cream. 

Tuesday was brunch and just random shopping around and then home. We were there for a good amount of time and I feel like I could have been there for another week and not have gotten bored - I would've gained some good weight with all the food, but not bored! 

This trip was so memorable and I don't think any of us have laughed that hard for a long time, even if there was a little help. It was so great to have almost all my best friends in one town for one amazing trip. I'm so glad that Ashley made it on her buddy pass, Brooke could get work off and that Megg and the boys let me jump on their already made plans.