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

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. 

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.

All things personal

Last post was all medical - this is all personal and fun things.

Since surgery I have felt very good overall which has been nice. I started to drive 12 days after surgery and that allowed me to be free to do what I like and go to the store and all those things. Went to a movie, went to my friends sons birthday party and did a wagon ride, dressed up for Halloween, went to the last summer farmers market at Wheeler Farm, took the boys (Ben and Jack) out trick or treating in my sisters neighborhood (which was really fun), turned 34, got the keys to my new place and have started to slowly move in.

Social Butterfly

My birthday usually is a big deal for me but with surgery and the whole no eating fat thing I kind of was a downer about it for a bit. I never realized how food centered a birthday is until I couldn't have anything fun! In the morning I met up with little Ruby, her mom Ali and her sister Jane for some acai bowls and healthier food. It was fun to be goofy with the girls and of course to see sweet Ali. You can read her blog here. Since I got the keys early (got them on the 1st and was planning on getting them on the 5th) I had some friends over to the empty place that night and just ordered pizza for them and such. It was a lot of fun to have everyone over to see it.

Look at this pretty cake my friends got me - even though I couldn't eat it until the next day. My wonderful friend Elise also went out of her way to make me a sans free birthday dessert - strawberry shortcake. It was delicious!

Since then I have been slowly moving things in and we have movers coming tomorrow to load up my storage unit. I'm a bit nervous to see what I have in there... some of the stuff has never been used so it will be like Christmas! I'm still deciding on what I am going to do with all my Sweet Janes stuff. I'm torn on it - want to keep it but also don't want to just store things to store things. I am also not sure I want to close that chapter all the way. We will see. I have until the 30th to have the storage unit completely cleaned out.

Besides moving I am going to try and do some fun things before life gets shaken up on the 10th. Not sure what, but definitely will do something each day not medical or moving.

One thing I want to acknowledge is that there is a saying that you never know your true friends until you have to ask them to help you move. Well, I am overly blessed in the true friend category. I have too many helpers! How is that possible? I sure do love my army.

LaterBlog: September 29-October 2

Three days doesn't seem like much but man did I cram a lot of stuff into those days!

September 29th was the Huntsman Cancer Institute Gala that I attended. I was invited by a friend of a good friend who works there. This is an annual gala hosted for Huntsman donors, staff and some patients. Afterwards there is a party for cancer patients, caregivers and family called "Take a Night Off of Cancer." I had attended the after party last year and had a great time. This year I was lucky to enjoy the program and dinner before, as well as look at the auction items. The one I wanted (two tickets to see the Ellen Degeneres Show) went for $4k+ so that didn't work haha! I will get there one day! In the program one of my doctors work was mentioned (Dr. Robert Andtbacka and his work to get TVEC approved) and he was in multiple pictures. I felt like a super fan the whole time! I didn't stay long at the afterparty this year but it was set up beautifully.

October 1st was a full day!
I started the day attending the AIM Melanoma Summit at Huntsman where both my oncologists (Grossmann and Andtbacka) spoke as well as some other doctors. There was also a patient panel that was very interesting and informative. I even scored a picture with my lovely doctors.

Owe these two a lot. Dr. Robert Andtbacka (left) and Dr. Kenneth Grossmann (right)

List of the drug approvals over the last 35 years... I've done all but 2 of these (Pembro and TVEC)

That night my sister, Tyler and I took a mini road trip to see the Spiral Jetty at the Great Salt Lake. We stopped on the way at a iconic drive in and then headed out to the Jetty. The roads weren't what we expected and weren't really fully paved but more a grated dirt road at times. Very crazy, and bumpy. When we got there it was almost sunset so we headed down to the Jetty and were told to walk to the water as it was beautiful and worth seeing. Growing up near the Great Salt Lake we would go on field trips as a kid and all I remember is how stinky and gross it was. Not the case at this part of the lake. It was amazing. We were basically walking on inches and inches of packed salt that looked like an ice rink and you felt like it should crack beneath you but it didn't budge! Once we got to the water we were amazed to see it was pink. Yes - pink! I asked if this is where unicorns live because it is that unbelievable. The pictures don't do it justice. On top of just being cool and beautiful it was sunset so we got the best of everything. Can't believe it has taken me so long to make the trek out there!

Spiral Jetty

Both trying to get a good panoramic picture, circling one another

Salt Flats

Nope, not ugly.

Crazy wind hair (and expression)

Pink Water

Tylers jump picture

October 2: High Tea and Dinner with Friends
I went to high tea with a close friend and that sure was fun! It makes you feel so fancy. It was a good time chatting and catching up while eating finger sandwiches and drinking tasty tea. I'd love to go back with some of my friends little girls and just watch them enjoy every second of it!
That night I went to Tylers where he cooked a delicious meal for me and two friends. He sure spoils me! Homemade rolls and everything. There was an awesome thunder and lighting storm that night too and he lives on the top floor of his building so we had a great view of it thrashing around. Very cool.

High Tea at the Grand America

It was a full and fun weekend .. sure love my people.