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

Hello blog followers!
I knew I had been slacking on blog posting but didn't realize it had been over two weeks. . Sorry! I have been pretty busy though so I feel like I have a valid excuse - and it isn't because I wasn't feeling good which is great!

After the last post I started the liver med (8/18) and haven't had any side effects from it. After not even a week on the meds my liver levels went down by almost half! Pretty great news. They are currently still trending down but just not as fast as the first week, but moving in the right direction. When I started these meds I had been off of cancer treatment for about 2 weeks and my tumors had started to sprout in my neck once again. And they started to grow fast. First picture is 8/16, second 8/24, third 8/27.

As the tumors grow the more they press on nerves to then comes the nerve meds and pain meds. I had an appointment on the 24th with the neurosurgery radiation oncologist and messaged my general oncologists that morning and said that my tumors were growing like crazy and they should look at them while I am at my other appointment. Luckily they got me in and we decided we need to get me on a treatment asap. We decided to do a new CT scan and then have me presented at tumor board again that week. Tumor board is where my entire team (surgical oncologist, general oncologist, radiation oncologist and nurses as well as other people in the melanoma field) get together and discuss my entire past and what we should do going forward. It is a giant powwow with me as the focus. Apparently there was a very lively conversation about me and a lot of ideas of what to do and the best course of action. Now remember we have to still think of my ~~damn~~ liver and how it is responding to things. The end conclusion they came to is to restart me on the first BRaf inhibitors (Debrafanib/Mekinist) as I didn't have a liver reaction to this combo while I was on it. This will also shrink my tumors and reduce my pain. If all goes as planned it will give my liver some more time to heal and react to the liver meds as well as treating my neck (lungs and hopefully brain too). Then they suggesting that I meet with a surgeon to possibly have them removed once they get smaller so it is less invasive. As much as I don't want another surgery it may be good to get the "roots" of these out. Then after surgery I would follow up with radiation of my neck. This I am not happy about but at this point I have to put something aside and do all I can to fight this. I restarted the BRaf meds and the tumors started shrinking like crazy almost instantly, which means the pain started shrinking too. So great!

First picture is 8/27, second is 8/28 (Pretty crazy right?) and the third is 8/31.

As for my CT results, there was obviously growth in my neck. My lung tumors haven't progressed much if at all. There are still the 10 tumors, but they haven't changed much in size which is good. We also decided to postpone the SRS Radiation (brain radiation) for a couple reasons. One, I needed to get my pain under control and so we started these meds, and I can't be on them if I do radiation as it interferes somehow. Also we are still fighting insurance and the appeal can take around 30 days to get settled. I had a new MRI done and my brain tumor has grown by 2mm, so it is now 6mm. Considering how fast and large my neck grows (easily 5CM in weeks) this isn't much but it is still growth. We decided to be on these meds for 4 weeks and then redo my MRI and if it is still growing we will pause these meds and do the SRS (with or without insurance approval, we'll figure it out). The BRaf inhibitors have a 40% success rate of crossing the blood brain barrier so we will give it a couple weeks to do that and if it hasn't then we will treat the brain tumor with the SRS Radiation. The waiting will give the liver meds more time to work, will give the BRaf a chance to hit the brain and time for the insurance company to have some compassion and approve the radiation. As bad as it sounds to postpone treatment on my brain, it is actually in our best interest overall.

I have also started to taper down on the steroids again. If all goes as planned I will be fully off of them in two weeks. This girl is excited!

Wow, that was a long update! Hope you are still reading to this point.. if so, good job! I am going to be posting all the fun things I've been doing outside of cancer soon. And it is a lot!

As always, thank you for following this trek and all the ups and downs (not just the tumors!)

oxoxo

I was sent home with my port accessed.. that was an interesting conversation starter!

Last night was definitely a night to remember... Well a weekend to remember I'd say!

Lets start with Saturday night. Tyler and I had tickets to Rudolph the Red Nosed Reindeer musical. We grabbed dinner before and then headed to the play. It was actually a lot of fun! We may have been the only ones with out children but I still really enjoyed it, probably since I am a kid at heart. Afterwards we decided to grab a drink at the bar across the street. When we walked in I looked up and saw my good friend Brooke there. I was shocked and thought we may have caught her on a date! I even asked if we were interrupting haha, but turns out she was there to surprise me. So fun. We got some drinks and chatted and then I felt someone scooting by me, almost like trying to sit at the table next to me and thought it was very rude and then she sat down next to Tyler and it was my best friend from California!! What a serious surprise! I was so excited to see her! And beyond shocked. She told me she found a cheap flight and was here for the weekend. We got some more drinks and had a great time.

Sunday I went to the market for a minute and then we met up for brunch and then decided to go see the toy store at Grand America. We ended up grabbing tea and ran into another friend of mine and we spent a good 2 hours just chatting and hanging out. Really fun. We had plans to meet up with Maryann and others for dinner later so we just killed some time at her aunts before heading out.
As we were driving to the restaurant Maryann called and said her car was breaking down and her brakes were grinding - asking if I can hear them over the phone even. Regardless she said she was pulling over and to come get her. Not thinking anything of it I headed to get her. We got there and she was sitting on her bumper. She pulled into the place we hold our holiday markets and when we pulled in there were all sorts of cars, which is weird for a Sunday. She opened the car door and then said "wait you have to see how these guys are dancing in this party!" and me being a nosy Nelly was all for peeking, so I pulled into a makeshift parking spot and we went to spy. I thought we were going to look through the windows and Maryann said she just opened the door.. What?! She's crazy! But before I knew it she had knocked on the door and it opened and there stood 50+ of my closest friends and family yelling SURPRISE!!! What the hell just happened?!?! I was soooo surprised, like absolutely no idea what was going on. I just had everyone staring at me, a camcorder pointed at me, flashes from phones and cameras going off and a DJ (What?!) blaring music for me. I seriously couldn't believe my eyes.. which started to fill up with gratitude and full of love. I have never felt more loved and special in my whole life! I can't believe I didn't see it coming at all!! I have lost my intense curiosity in my old age of 33! Ha!

It was a birthday benefit - so people had to pay $33 to attend and then there was a silent auction full of AMAZING things donated by all sorts of people. My market family really showed up for me. I kept trying to look at all the items but kept getting pulled away so I need to get the list of everything there. It looked awesome from what I saw!

There was Fire and Slice Wood Fire pizza cooking pizzas and making salads. If I had one more minute to think things through I would have realized it was pizza's trailer outside (I noticed it as we were walking in) but before I knew it the door was opening.. Sneaky Sneaky people! There was also tamales from Tamales Tita, cookies from The Hungry Bear, shortbread cookies from Scotti and Shorts, coffee donated by Starbucks. There was a bar with my favorite drinks: Hennessy and coke, champagne and PBR. My great friend Elisa from The Baking Hive made a 3-tier birthday cake with sprinkles, it was beautiful and beyond delicious! There was a magician which was really fun and also cotton candy. Balloons everywhere. I had a sash that said happy birthday. My sister even brought me a wardrobe change. The theme was "Big Kid Elegance" and it definitely was!

Maryann gave a sweet speech and then so did Megg - using my favorite #.. #melafuckinoma. Although it was a family affair, it was needed. Ha! Then everyone sang happy birthday and I blew out the candles after making a wish. Then the DJ played some great songs and we all joined in line dancing and group dances. SO much fun! My dad hopefully caught some of it on camera.. We shall see what the final product shows.

I can't believe they pulled this off without me even having a slight idea of what was happening! I had seen so many of them in the weeks leading up to it and no one even hinted to anything. Ashley coming into town didn't even heighten my radar. Even everyone at the market wishing me a happy birthday didn't make me wonder - I just thought Maryann was telling them I wasn't working cause it was my birthday. Never did I think the party of the year was in the works!

How am I so lucky to be surrounded by such love and support? It truly took my breath away and made so beyond full of gratitude, love and belonging! My army really showed up for me that night. It was so amazing. Words truly can't describe it. (even though I have made a very long post to describe it! Ha!)

After all was said and done they raised over $5,000 for me, about $4,000 after all expenses were tallied. SOO AMAZING! I was starting to stress about money heading into the new year as my deductible and max out of pocket restarts. I still have some money left from the previous fundraisers but was getting a little worried about how far it would go.. But my friends really pulled through on this. It really is incredible.

33 is going to be good I'm telling ya!! Birthday months are THE BEST!