LaterBlog: August 20-26

Another busy week in the books! I think I just decided to fill August with all the summer fun at once!

On the 20th I got a haircut (it grows crazy fast - and curly - right now!) and then headed to Roy to do a balloon release in honor of Miss Mandy with her coworkers and family. We also did her favorite shot which tasted like French toast - pretty wild. I only took a sip but it was tasty! The balloon release was hard but it was also nice to watch them float up.

After that my sister picked me up and we headed to Eden for the hot air balloon festival. We got there and watched one take off and then had some food and looked at the vendors. Once it was dark they did the "glow" where they have balloons on the ground and light them up with the flames. My sister and I have wanted to go to one of these festivals for awhile so we were excited to catch one.

 

The 21-23rd I went to Bear Lake for a girls trip. I went with one of my best friends Maryann and then  two of our friends we met from the farmers market. We got there pretty late on the 21st and all of us were pretty exhausted so we headed to bed. The second day was the lake day. They rented jetskis and we just hung at the beach for the day. I didn't feel so great to start the day off but rallied and enjoyed myself by mid day. We enjoyed some raspberry shakes (they are known for this) and fries and then just hung out for the night. We had to head out super early because I had my radiation consult. My friends are very nice to do this cause I'm sure they'd like to have stayed longer. The 23rd was my radiation consult and you can read about it in the previous update blog.

24th was a full day for sure! I started the day with a work lunch with Gastronomy. They wanted to do something for me in light of my new news so we decided to go to lunch. The entire office (minus a couple people) came and it was a lot of fun. We went to a new southern restaurant called SoCo and it was tasty! After that I had to prep for my CT scan so I met a friend and drank up. Sure hate that stuff...

Once my CT was done I rested for a bit and then went to ZooBrew. ZooBrew is when they open up the zoo to only adults - no strollers or kids! There is also beer and wine if you drink. It was the best way to see the zoo! As much as I enjoy going with my friends and their kids, it was a lot of fun to just mosey around the zoo and look at everything. The lion cubs were all playing and harassing their dad, it was adorable.



That Friday (26th) I looked at a duplex that I will most likely be moving in to. The timing is still up in the air but I hope it works. The location and price are perfect so it is hard to pass up. We shall see! That night my friends and I headed up the canyon and made some dinner and then did S'mores. There is something about just going up the canyon and hanging around a fire chatting with your friends. We need to do it another time before the seasons change.

Phew - lots of fun stuff! And pictures!

LaterBlog: August 12-19

I have been filling my time up with as much fun stuff as I can lately. This means I have been extra busy and don't have time to update the blog when I'm out playing! *my android phone would let me update through the app, but not Iphone...

On the 12th I got to watch my sister walk in graduation from her executive masters program at BYU. She has worked so so hard the last two years to achieve this and I couldn't be more proud. It was fun to watch my uncle hand her the diploma as he is an alumni as well as a faculty member of BYU. It was just a good moment. We went to dinner as a family (extended) after which had its ups and downs but overall good. My cousin was in town from New York so it was great to see him.

On the 13th I went to a local craft/DIY festival with a friend. There were lots of fun booths and such and I came away with a sweet treat and two pairs of earrings. It is always fun to just wander through these things. I topped the day off with boating with friends up at Jordanelle reservoir. It was so great to just check out from things for a couple hours. Goofing off, snacking and just hanging. It was a good reset for sure surrounded by good people and pretty scenery.

 


The next few days were full of fun breakfast, lunch and dinner dates throughout the days. I tend to do a lot of that - and I'm not complaining! It is my favorite thing to do with friends, and my steroids approve haha.

On the 18th my dad, sister and two friends went to a Bees baseball game. We got peanuts, beers (not me sadly) hot dogs and ice cream. All the things! It was a fun time to hang with my dad and see him enjoy himself and having us there with him. Earlier in the day I went with my friend as she got a tattoo - for some reason I love to watch other people get tattoo'd but it isn't for me.

The 19th was Mandys (my melanoma soul sister) birthday. This is also the day that her and I met the previous year, technically. We met through Instagram so we met virtually but I saw her and she saw me in the waiting room of the infusion room so it counts. I went back and looked at our first conversations so that was a little hard. Sure do miss that spunky thing.

Looking back at this week I was a busy girl! I am so grateful that my treatments don't make me sick to the point that I can't enjoy things. The hardest part is the steroid shakes and such but that is all workable. Things could be so much worse, and I am thankful they aren't bad.

Busy two+ weeks without a blog update = super long update

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! 

Miles for Melanoma - Salt Lake, September 10th! Join my team!

I am heading a team for the second annual Miles for Melanoma walk on September 10th at Wheeler Farm! I am excited to be part of this for a second year and to help this walk grow and get more attention. Last year was the first one and it was a pretty sad turn out.

My team name is #melafreakinoma, I figured they probably wouldn't like my signature hashtag so I toned it down just a hair.

If you feel like attending then you can join my team by going to the Miles for Melanoma page and joining my team. If you just want to fund-raise for me that would be great too! Last year I was the fastest fundraiser - raising over $400 in only a couple days! I have almost reached my team goal of $1000 which is great! Our team is currently #2 for the top fundraisers, I think we can beat the other team - but time will tell.

Thanks for all your help! I am working on getting some t-shirts made up too possibly, I just don't know if they would be done in time.

http://join.melanoma.org/site/TR/5kRunWalk/MilesforMelanoma?team_id=3047&pg=team&fr_id=1270

Liver ... I need you to work with me!

The liver saga continues!

I got the liver biopsy results today and it showed drug related inflammation and the same characteristics of autoimmune hepatitis. As not fun as that sounds, it is actually better for me for the moment. Because it shows the same properties as a compromised, damaged liver I am ok to start a drug that is usually used for liver transplant patients. This drug is called CellCept. I can also start tapering off, yes off, of the prednisone (steroids) that I dislike so much. The goal is to get me off of the steroids for a couple reasons, one being the long term effects are large and the general side effects are a lot to deal with (if you haven't noticed...) and the second and main reason is that I can not start a new systemic cancer treatment while on steroids. If everything goes well I will be down to 5mg or off completely in 3-4 weeks. Goodbye chipmunk cheeks, extra water weight, irritability, ravenous eating, shaking hands/body and sleepless nights! 

I also had my liver levels checked today and sadly they are elevated even more than I was when they admitted me two weeks ago, in the 700's. Thankfully they agreed that I could monitor from home and not be admitted to just sit in the hospital. I was worried that they were high again because I have been extremely tired the last few days and extra itchy (one of the signs that my bilirubin is higher than usual but I don't have any yellow discoloration). I don't have the normal symptoms of an elevated/pissed off liver like dark urine, yellow skin or eyes. If I start to see these things then I will go in, but even when I was at 1200 I didn't have these symptoms so I don't think it will be a problem. I am just happy to not be sitting in the hospital writing this! 

I will start these meds as soon as my pharmacy fills them - most likely Thursday morning (day after tomorrow) I am hoping that the side effects aren't too intense and are easier to deal with than the steroids. We shall see. 

So liver, I need you to work with me! Please tolerate and respond to this new med so I can move forward in treatment and not waste anymore valuable time. Just being off of a treatment for two weeks my tumors in my neck have started to grow. Who knows what is happening in my brain and lungs. I try not to think about it. Still no symptoms from those areas so I am hoping to keep it that way. 

Insurance Denial

I got a letter from my insurance informing me that they have denied my brain radiation. So frustrating. The reasoning doesn't make any sense to me either. The reason is this:

"The request for stereotactic radiotherapy does not meet SelectHealth's Stereotactic Radiotherapy Medical Policy criteria. The information we received indicates that there has been progression of the cancer outside the cranium. Therefore, the request for stereotactic radiotherapy has been denied."

So basically it is saying that since it has spread elsewhere (my lungs) that they wont cover it. Now keep in mind that radiation or surgery are really the only options for treating anything in the brain.

The reason for this is the blood-brain barrier, your bodies own defense mechanism to prevent harmful chemicals and such from reaching the brain like chemo and such. Surgery isn't an option because of it's size (too small thankfully!) so this is truly the only option for treatment.

My doctors haven't said it is final and that they will continue to fight the denial and hopefully reword it in a way that things will be approved. Regardless I will be getting the treatment, we will just have to work it out and pay for it out of pocket. Insurance is messing with the wrong army and the wrong fighter for sure - I think they just think people will just be ok with these decisions and not do the treatments. Nope, not here.

We will figure it out. I'll keep you all posted!

The last few weeks..

Have been insane. A roller coaster. Emotional. Busy!

I found out my cancer spread on July 17th. After that was my aunts birthday, then Utahs Pioneer Day, then my sister and cousins birthday on the 26th. I decided to not tell my extended family the new news until after these events passed so that we could enjoy them and not focus on me. It also gave me time to process the information a bit and get a better understanding on it.

The night of my sisters birthday we got the call that my cousin and his 8 year old son died tragically. Front page news and all. Even though we weren't close, there was no way to ease this horrific news and have really any understanding.  It still doesn't seem real at all.

During this time I was lucky to have my best friend in town to help keep me busy and mind off of the craziness around me. I also had a good friends bachelorette staycation in Park City - so there were some fun parts to the insanity.

On the 1st I had a brain radiation consultation, then on the 3rd I had a normal appointment and ended up being admitted for the night. Not what I had in mind! While in the hospital I got a distress call from my cousin who lives by my uncle (the dad and grandpa to the two that died earlier in the week) saying he wasn't doing well and for my dad to call. My dad luckily talked to my uncle, who ended up passing away in the night from what looks like a broken heart/heart just stopped. Three generations gone in a matter of a week. My uncle and I had become a bit closer over the past couple years. He has lived in Oregon for some time so I haven't seen him in a very long time, but thanks to Facebook we have been able to communicate. He also had cancer so we connected on that level as well. He was my crazy uncle Mike. And I say that lovingly - but he was a bit crazy. It was good to get a random message here and there from him, and I hope he felt the same with my messages.

Then followed funeral planning and such - never fun for anyone. My take away from it all - HAVE A WILL OR YOUR WISHES IN WRITING!

Then yesterday I had my liver biopsy, and today was the services for my uncle and cousin. The services for the 8 year old were held the day my uncle passed.

To cap off the week, on Friday my sister will graduate/walk with her masters degree. It will be nice to end these crazy few weeks with something joyful.

Life doesn't slow down - no matter who you are. And sometimes it is an insane roller coaster with a whole lot of dips, like right now. Families can be a bit crazy, but it is because they care. I struggled with knowing that my family overwhelms me with support - sometimes too much - and the same support wasn't offered to someone of the same family, my cousin. I am guilty of this as well, but it just hit me hard that we come from the same family and our situations are so vastly different. I don't think I'm alone in the feeling of this guilt. It definitely has made our family reevaluate some things.

I know things will continue to go on and there will be crazy times, but man the past month has been particularly rough! Ready to get back into a routine and know what is next, hopefully will find out some things this week and make some plans.

Love you uncle Mike, Moses and Xavier - Hoka Hey as uncle Mike would say. Once I can have a drink I will have one for you, can't wait.