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. 

Ready, Set, Treatment type #15

Man I am a slacker in updating lately, guess that just means I'be been busy doing other things, good and bad. Here's what's been going on...

Scan results and such...
I had my appointment with my general oncologist to go over the scans and decide what we are doing next. As far as scan results go - relatively stable. There are some lung mets/lesions that are larger but most are the same or smaller. Liver, spleen and bones are all stable, if not improving. Front of my neck is obviously larger. My brain tumors are both smaller and there aren't any new tumors which is great.
Now treatment options...
It may seem that if things are stable, for the most part, then why not continue on what I'm on? Well because it isn't working on everything, it isn't safe to stay on the same treatment. We talked about the options in front of me and we decided to NOT do surgery right now and to restart Keytruda (Pembrolizumab) to see if that will take care of everything. Radiation isn't ideal, surgery just takes care of the problem temporarily, and I sadly do not qualify for many trials due to my past issues with my liver from treatments. We also talked about adding TVEC (a version of the herpes simplex virus) injections into my tumor on my neck. They knew my insurance would deny the injections, so we are applying for drug assistance. Keytruda is a good enough attack, but adding TVEC would just be that much better. I stopped the BRaf inhibitors and started Keytruda yesterday. Feel pretty good, just tired but that could be from having a fun weekend.

Treatment #15, Day one

Now to tell you about the fun parts of the past week. Last Thursday I knocked off one of the items on my bucket list - to speak to younger kids about my journey and sun safety in general. My friend teaches 7th graders and let me talk to the kids. I'm not going to lie, my goal was to scare them a bit so they stay away from tanning beds as well as lather up on sunscreen this summer. It went well - even when the power was out for almost the whole day. Not so fun when a lot of your presentation is based on pictures and videos and such! I did well talking for the entire class and we made them check their skin for moles and to just get familiar with their spots so they will know if they change. I also had them give me some more ideas for my bucket list. Man I got some good suggestions! Lets just say skydiving is the most suggested; not so sure on completing that!

Eat Eggs and Waffles. My type of bucket list item

This past weekend was my favorite time of year - Pride Weekend. Gay pride has been something I have gone to for 11 years now and love every minute of it. I am proud to be a gay ally and it makes me happy to see the support grow each year. This year we did the festival on Saturday and then the parade and a BBQ on Sunday. The parade is always fun, but man it was so hot this year! I started not feeling so great so I took a break inside a bar to cool down and get some more water in me. Heat just takes it out of me. After the parade we BBQ'd and relaxed for the day. Happy I was able to make it there one more year!

I decided to make a sign this year. Sadly it is the truth. No takers lol

This weekend I am headed to Portland! It is a last minute trip but it is shaping up to be a fun time. Tyler and Spencer were already going, Megg was going for work at the same time. I had a flight voucher. It all just lined up too well! Brooke made it work to go as well so I am excited for a fun adventure in the Pacific North West. I have never been so it will be fun to go somewhere new. Pictures to follow!

Added to the stack today... Eff You See Kay. 

Went on a little stroll in the mountains after brunch with a friend

Went to a Paint Mixer and painted my pups (well my parents and sisters pups)

My friends new company, Villmark. She chose me to model one of her neck warmers - check them out!

San Diego to Scanxiety overnight...

I had an incredible time on my vacation to San Diego. We packed the days with the Safari Park, Sea World and lots of good food. The most fun of it all was all the good times talked about and made. Knowing someone for 30 years means you've had a lot of fun times and have known a lot of people down the road. It was fun to reminisce for sure!
The first full day we went to lunch by the sea in La Jolla, it was gorgeous and tasty. We then headed to the Safari Park. Between the beach and the inland we gained 20 degrees in heat - landing at 94degrees. No fun on that front. Besides the heat - the park was great! We saw all sorts of cool animals, cheetah run a sprint and then the coolest thing on the safari part - a baby antelope was born seconds before we got there. Umbilical cord and everything, standing for the first time. So cool. Ashley came up from Orange County to meet up and spend the night with us. We grabbed a nice dinner on a patio overlooking the ocean in Del Mar and watched the sunset. That night we talked til 2 am giggling and then zonked.

30 Years of Friendship Here

 

Sun Hat Hazard... Sorry Jackie

Brand new baby, just standing for the first time. Umbilical cord and all. Fighting males (3) behind them

THE best local strawberries from a road side stand... delicious!

Our Dinner View

The next morning Ash and I woke up early and had coffee by the pool and chatted, nice and relaxing morning (sadly I slept terribly that night!) We then went and met my friend Morgan's family who live in San Diego for a champagne brunch. It was a great little brewery with a fun brunch. They had an amazing koi pond and live music. Ash joined us for that and then headed back up to Orange County.
Sunday afternoon we spent it at Sea World seeing the remaining shows and animals. That night we were exhausted! We came back to the hotel and relaxed for a bit, went to the hot tub. Morgans family came to the hotel and joined us for a late dinner and some drinks.

 Besties at the Pool

5yr old at heart... they won me a stuffed animal and a coin purse WHILE taking me to Sea World. Happiness.

Koi pond at Karl Strauss Brewery for brunch

The next day we checked out of the hotel and Morgan had to do some work so Jackie and I and Morgans sister returned to Sea World. We took in all that we missed, including a rollercoaster and water ride; both that I haven't done in years and felt like an old lady after once we were all disoriented from being jerked all over! (both the Safari Park and Sea World have short hours... 10-5/7pm) We then hit the beach for a bit and grabbed some Mexican food for the road and headed to the airport. And just like that the exciting weekend was over! It was a lot of fun, but I am still recouping! So tired still!

Toes in the sand and the Pacific = Reset

Adventures of the Sun Hat continue... 

Avalon, me and Jackie doing some amazing selfies

I had Tuesday to recoup and then Wednesday I had an appointment, Thursday I had scans and another appointment. To summarize what I learned from those appointments and scans so far. Not really much. Basically everything hangs on what the scans reveal. We did block out the surgery date if we go forward with surgery to remove the neck tumors. That date is June 8. So approximately 12 days away.. oy. It is a much easier surgery than I have had, but it is still a surgery and will be followed by radiation to the neck. Some clinical trials were brought up as well, both are paired with Keytruda (pembrolizumab) but both (and radiation) involved a wash out of the meds I'm on. I would be off of all systemic treatment for a minimum of 28 days and that scares me, worries me. I don't trust what my body will do with a month to run wild. So that said, I have had some intense anxiety happening lately. I am doing my best to control it but it is definitely wearing on me. One thing I have started to notice is pain in my hips again. This makes me think that the cancer is slowly starting to grow there again. Definitely don't like the physical reminder that it is inside. I have an appointment on Tuesday with my general oncologist so I hope to finally get a better idea of what is happening and get a plan. Once I have a plan that should help ease my anxiety a bit.

The. Worst.

This weekend is Memorial weekend here and so I am hoping to do a little BBQ'n and hanging out. Try and keep reminding myself that there isn't anything more I can be doing at this very moment to change where I am at. Just got to be in the moment and enjoy what I can right now.