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!

Things are pretty good

I am happy to report that since treatment a week ago I have had little to no side effects - pretty crazy and a complete difference from round one. The worst thing happening is that my neck is extremely sensitive and sore. The tumors are larger, red and warm. It is almost like they are aggravated. They are pushing on tons of nerves so I get lightning bolts of pain when you least expect it. It is very unpleasant and painful so I have started back on my nerve medication which is starting to help out a good amount.

I was so excited that I felt so good so soon after treatment because the Sunday after was two of my most favorite events - Gay Pride and the opening day of the Wheeler Farm Farmers Market. I rested everyday up until Sunday so I would have the energy to go to both. It was a full day! I had a great time though and was worth how tired I was at night. Since then I have been pretty active and even worked two days this week. Doesn't sound like much but it truly is. Hoping it continues.

One thing lately is that I am in a sort of mental funk. My mind just wonders to the dark side of things and then I have to reel it back in and to the moment. It is part of having cancer - your mind wanders and goes down the list of "what if," and it is terrible. I am working on getting out of the funk and not stay in it, it will just take time.

In the middle of all the fun my dad had back surgery. He had 4 discs repaired since they had herniated. His surgery went really well and he was discharged practically immediately. Hoping his recovery goes smoothly and no re-injury happens. No bending, twisting, lifting. Getting in and out of bed log-roll style. It's a lot. Backs are tricky... I know too well!

An update on little Ruby who is 3 and fighting stage 4 melanoma and on Nivolamab (one of the drugs I am on) - she had her scans this week. Her little body has 40 tumors and sadly they are growing, which means the treatment is not working and so they have to look at other options, which there is slim to none of. There are some clinical trials they can apply for but that is a process and may not happen in time. It truly makes my heart sink, and makes me think the worst for myself as well (I'm really trying not to go there) Her fundraiser is this weekend and I have been helping get silent auction items and was impressed that I got 30+ donations! I truly have amazing people around me and an amazing farmers market family. The rally will be amazing! If you want to donate you can go to facebook.com/rallyruby to donate to the rally or their gofundme - https://www.gofundme.com/RallyRuby - anything will help! I'm so excited to go support this sweet girl and her amazing family. Really hoping we both can beat this beast melanoma!

As always, thank you for all the love and kindness you've shown to me - especially those sweet people who have sent me letters! I was so amazed that almost half have been from people I don't know but just follow my journey. Truly incredible. Thank you. Thank you. Thank you.

Almost all the donations, amazing. 

My Pride buddy for almost a decade!

Big Chair Photo - a tradition! 

Dallin and Davis

The Parade

June 26, 2015 #lovewins

Proud LGBT ally today! Love won!! #loveislove

Love is Love

If you know me you know that Gay Pride is something I love to attend. It is one of my favorite days of the year and I have gone consistently for the past 8 years. I was getting sad when I looked at the timing of chemo and pride and it wasn’t looking like I would be feeling good enough to go. I have been really weak and can’t stand for very long and that’s all you do at pride is stand and watch the amazing people walk down the parade - at least that’s what we’ve done the past 8 years. Then I thought hey, why not bring a chair! Amazing right? My best friend brought me a chair and an umbrella and I got to enjoy the pride parade. I still wasn’t able to go to the festival but I felt part of the tradition. 

Although I have skin cancer and one of the main causes is the sun, I will not be a prisoner of the indoors. I will adjust what I wear and lube up on sunscreen and will enjoy an outdoor life. It may cause me some anxiety but it is just one of the things you can’t avoid - being in the sun at some point. I have bought some great hats and scarfs though and will be more covered up that in years past. I also have stocked up on new sunscreen - don’t want to run the risk of it expiring and not working. 

Hoping for a great and enjoyable summer and I am so happy I got to spend pride with some great friends.

Pride

Happy Pride! Don’t mind my awesome set up.. #pride #loveislove (at Salt Lake City Pride Parade)