From sweet and salty to stage IV metastatic melanoma and everything in between : July 2017

Monday, July 31, 2017

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

Thursday, July 20, 2017

My Brief Interview on Fox and Friends

Here is the link to when I was interviewed by Abby and Jon Huntsman for Fox and Friends

A Look Inside the Huntsman Cancer Institute

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

Friday, July 14, 2017

A full two weeks

It's been two weeks since I started sharing the news of my timeline. Every conversation was so hard, but also so good at the same time. Conversations have become more meaningful and deep. Saying things that you wouldn't have said if it wasn't for the harsh reality that is coming. With the conversations have come many social gatherings and meet ups so that has been fun. And exhausting. I have been tapering off of prednisone so the energy level is dropping. I still feel well though so that is good. I can feel that the tumors are growing, just slowly thankfully.
I decided to take the remaining BRaf meds I have and have roughly a months worth of meds so that will help prolong my time. I also have a brain radiation appointment lined up to address the 3 new tumors in my brain. This will be considered palliative symptom care. Other than that I am just going through the motions and hoping things don't move too fast.

I have been going non stop since the news and have been #stageivlivin like no other! Here's the photo recap!