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

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.

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.

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.

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