My Brief Interview on Fox and Friends

Here is the link to when I was interviewed by Abby and Jon Huntsman for Fox and Friends


A Look Inside the Huntsman Cancer Institute

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.

Surgery Day

Today is the day, surgery.

I have been blocking out what is ahead of me for a bit. Sure I have talked about it and shared the possible outcomes but I have been making my mind think that the day may not really come, that the surgeon will reschedule or that some miraculous thing happened and they began to shrink on their own. Of course none of these things happened, but we are here. I have 20 minutes until I have to leave the house. Things have gotten real!

Today is the last day I will have these tumors that I have gotten so used to for 15+ months. Not that I want to keep them,I just don't really remember what it is like to not have them as a constant thing to focus on. And who would think that I would be worried about missing my giant scar? It is going to be replaced by another giant scar, just more giant-er.

My hopes for today are that things go smoothly and that there is minimal nerve damage and permanent issues. I hope that the scar is as minimal as it can be, considering. I hope to wake up and be able to smile and move my facial muscles. I hope to wake up and be able to swallow on my own. I hope to wake up without nerve pain (just pain from the surgery). I hope to wake up to good news and not bad. Lots of hopes.

For now I am going to try and focus and get the final things ready for this big, life changing moment. My phone is blowing up with messages of love and encouragement. This is what keeps me going and staying positive and being brave.

Here we go.

Stage IV Realness - Surgery is Scheduled

Yesterday was a hard day. A hard day I wasn’t anticipating. I had my surgery consult to remove the tumors in my neck. I went in expecting a repeat of the surgery I had in February 2015 but this one is much more involved.

This time they will be doing another radical neck dissection and extending the current scar up behind my ear and a bit outward onto the scalp as well as extending the scar across the front of my neck. This will give them access to all the current tumors, around 6. The surgery is a long one and is much more involved than the first. I don’t really want to go into many details, but it is going to be rough. (If you truly want to know more I am happy to answer any questions you have) I will stay at the hospital for at least two days and then head home after to recoup. After I am healed to their liking we will start radiation; I assume about 4 weeks after surgery. And hopefully get my brain radiation then too. The goal is to remove the bulk of the tumors (it is impossible to remove all of them due to the intricate nerves and veins they are surrounding as well as the tumors are in tissue so the edges aren't clearly defined) and once the bulk is removed then hit it with radiation to hopefully kill the remaining cells. Radiation works better on a cellular level and not a bulk level, so it gives better chance at me killing the most cancer cells possible. 

Surgery is October 12^th. So basically I have just under 3 weeks to live it up before things get really real. I was sad to have to cancel a lot of things that I had already planned (two trips!), hopefully not letting down too many people and they understand the circumstances. They said I’d be down for about 6 weeks.

The hard part about yesterday was that reality slapped me in the face. I really, truly do have stage IV cancer and it gets scary. Decisions are hard and carry so much weight. Treatments are harder, more involved. I no longer have multiple options to choose from as far as treatments go. Things are getting more and more real, and the alternatives are just what you fear – end of life. As much as I do not want to have these tumors, this surgery will be a life changer for sure. The alternative is to just let them grow and then run its course through my body. There are some more systemic treatments available but my track record shows that these f’rs don’t respond to much and when they do they decide to stop responding at some point. Let’s not forget that my neck tumors started growing during biochemo – they are stubborn, painful, ugly shits.

As for the next 20 days I am going to do all that I can to enjoy myself. I am working on getting to California to see my best friend and put my feet in the ocean and maybe head to Disneyland. I am going to see my friends, eat lots of deliciousness, get ready to move into my own place at the end of October, work a little (it keeps me kinda sane) and just truly enjoy myself. I will have plenty of down time coming up that I can binge watch to my heart’s content. 

September 4-23rd - All the things!

I’ve had a pleasant few weeks. Still keeping busy, living life. Because of that I (again) haven’t kept up with my blogging updates!

I went to a pie social and ate all sorts of pie, got a massage, had lunch with many different people on different days, family dinners, coffee dates, went to the fair per tradition and held a 7day old goat – heaven, ate fried cookie dough (at the fair of course!) went to a makeup class for cancer patients (scored a lot of good free makeup!), lots of farmer’s market visits, brunches, birthday parties, learned how to make my favorite aunt Annie’s cinnamon rolls – so many things!

 

My dad celebrated his 71^st birthday on the 8^th. It is wild to me that he is 71, he doesn’t look or act how I imagine someone who is that age. Not sure if that is a good thing or not? We had a family dinner and a giant cake to celebrate.

Sarah (my sister) and I ventured out about 45-minutes north to Brigham City Peach Days. Expectation: peach everything; peach pies, peach cobbler, peach drinks, peach candies, actual peaches. Reality: basically a fair like event with one stand selling peaches and then a random peach flavored thing here and there – maybe 5 things. So, not what we expected but it was still a lot of fun and I would definitely go again. We had some tasty Dutch oven dinner and peach cobbler (one of the only real peach thing we saw outside of the actual peaches). I want to do a Dutch oven cookout or something, maybe just dessert. I think that sounds fun!

My sister and I also went to an Indian cooking class where we learned how to make butter chicken, aromatic rice, pickled eggs Indian style (forget the name of this dish), mint and raisin chutney and my favorite, naan. It was a lot of fun and man there are a lot of spices and ingredients to each dish! The instructor tried to kill us with a Carolina reaper pepper but we survived. I don't do well with spice but it turned out good! I could go without the eggs, but am happy to have tried it all and now know how to cook some Indian food from scratch! 

I had my liver levels checked (on the 14^th) and the levels are down a bunch! Both are under 100! Best news ever. This means the liver meds are doing what they are supposed to and I can stay off of the steroids. Yep you read that correct – I am officially off of the prednisone!! It is pretty great. I have felt pretty good since being off of them, just low energy. I am able to not use a sleep aid now and my shakiness (mostly in my hands) is much better. I do have some skin reaction to the new BRaf meds but not bad enough to take steroids again, and truly hope it stays this mild and I can tolerate it. 

 

My last 5mg dose of prednisone! 

A long way from 120mg!

My dear cousin came in town to play (and deal with some family stuff) and we had some good times. We had a delicious dinner out the first night and then followed that up with a ReAl Salt Lake soccer game. It was a sister double date – her sister and my sister joined us. It was a lot of fun even though the game kinda sucked. The next day we went to the Wheeler farmer’s market and then headed up the canyon for brunch and to see the amazing leaves changing. It was beautiful. After brunch we walked around Silver Lake, an easy local hike (walk). It was so great to have her here to play, and I am so happy that she and I have become close in the last few years. We’ve both had some major stuff happen to us and we just connect on a deeper level.

 
              Sisters photoboming sisters - priceless!



 

Mandy’s (my melanoma soul sister) family invited me to go to a paint night with them. Paint Nite is where you head to a restaurant or bar and everyone paints the same picture step by step while being able to drink or eat. The painting was “Rainbows and Dragonflies.” Dragonflies is how Mandy said she would come back as to come say hello so it was only fitting. It was a lot of fun and it is great to see how different everyone’s painting comes out – even though we are painting the same thing. I was happy with mine; the colors are much more bright outside of the bar lighting.

Mine is on the left - Shaundra's (Mandy's momma) in the middle - and family friends on the right

I am truly lucky and amazed each day to have such great and fun people around me. Life is too insane to let it conquer all aspects of your life – you have to live a bit and enjoy yourself! I have worked hard these past two months to live it up and I feel like I am definitely succeeding. I have a good friend’s wedding tomorrow that I am looking forward to and then just spending time with my army. Man my blogs get super long when I don't do them often! Goodness!

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.