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
Tuesday, August 16, 2016
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.
Saturday, August 13, 2016
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:
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 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!
Wednesday, August 10, 2016
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.
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.
Tuesday, August 9, 2016
Liver Biopsy Today
Today is when I get my liver biopsy - and I'm not looking forward to it in the slightest.
I am hoping it is going to be fast and that I will have some sedatives.. I know they don't put you out but I don't respond to the conscious sedation well so we shall see.
This biopsy will help determine what is going on with my liver and hopefully give us some answers as to why it continues to stay elevated as well as why it isn't tolerating any drug/treatment we have been trying. The doctors said that it is acting as if I have autoimmune hepatitis but that I am not testing positive for it, so hopefully a closer look at the cells and such will give a better idea of what is happening.
After they look at the biopsy they will decide if I should go on a liver med or just continue the steroids. Ideally I will come off the steroids and the liver med will regulate my liver enough that I can start a new treatment and continue fighting the cancer. As of right now I am not on any treatment and can not start a new one if I am on steroids. We really need my liver to start shaping up!
As of three days ago my liver numbers were trending down but still high, about 8-9x the normal. They will check them again today I believe and we should see what they are doing.
Here's hoping it is a fast biopsy!
***Update***
Biopsy went well. It wasn't nearly as bad as I had anticipated which was a huge relief. They gave me mild sedation, which actually worked, so I wasn't too anxious as it was happening. The pain wasn't bad either. I think the hardest part was having to lay on my stomach for 3 hours after the biopsy to help stop bleeding.
Also I wanted to make sure everyone knows that they are not doing this biopsy to look for cancer - they are looking for reasons why the liver is freaking out when I am on treatments.
We should have the results by Monday
I am hoping it is going to be fast and that I will have some sedatives.. I know they don't put you out but I don't respond to the conscious sedation well so we shall see.
This biopsy will help determine what is going on with my liver and hopefully give us some answers as to why it continues to stay elevated as well as why it isn't tolerating any drug/treatment we have been trying. The doctors said that it is acting as if I have autoimmune hepatitis but that I am not testing positive for it, so hopefully a closer look at the cells and such will give a better idea of what is happening.
After they look at the biopsy they will decide if I should go on a liver med or just continue the steroids. Ideally I will come off the steroids and the liver med will regulate my liver enough that I can start a new treatment and continue fighting the cancer. As of right now I am not on any treatment and can not start a new one if I am on steroids. We really need my liver to start shaping up!
As of three days ago my liver numbers were trending down but still high, about 8-9x the normal. They will check them again today I believe and we should see what they are doing.
Here's hoping it is a fast biopsy!
***Update***
Biopsy went well. It wasn't nearly as bad as I had anticipated which was a huge relief. They gave me mild sedation, which actually worked, so I wasn't too anxious as it was happening. The pain wasn't bad either. I think the hardest part was having to lay on my stomach for 3 hours after the biopsy to help stop bleeding.
Also I wanted to make sure everyone knows that they are not doing this biopsy to look for cancer - they are looking for reasons why the liver is freaking out when I am on treatments.
We should have the results by Monday
Monday, August 8, 2016
Fun Stuffs
I decided to make another list of fun stuff to do - that people can do with me! My 35 before 35 isn't the most group friendly lists so I thought it would be fun to put together a list of the things I always say I want to do but never remember to mark out my calendar or make efforts to do. A lot of these are this month or next, before fall/winter hit so it will be a busy few weeks!
- Lake day with the party barge
Campfire up the canyon - S'mores of coursePaint night- Lava hot springs
Real Salt Lake gamesBees game with dad (going on Aug 18th)Hot air balloon fest in Ogden - Aug 19-21Mumford and Sons concert - SeptemberCraft Lake City - Aug 12-14Melanoma Walk - September 10 JOIN MY TEAM! Miles for Melanoma - Team #melafreakinoma- Take more pictures with friends and family
- Dutch oven cooking - dessert mostly
- BYU Basketball Game to watch my cousin play
- Hang at the Cliff Spa pool - in the shade obviously
Zoo Brew - August and/or SeptemberBear LakePeach Days in Brigham CitySpiral Jetty- Bonneville Salt Flats
I'll keep adding as I think of things!
Friday, August 5, 2016
Broke out of Hotel Huntsman!
Hotel Huntsman (Huntsman Cancer Hospital) although very nice, is not where I want to spend my time. After one night there I broke out and was able to head home.
Liver levels stayed the same overnight basically so no new spikes which is good. Met with the liver team and we are going to try and figure out what is happening with my liver and why it is reacting so drastically to all the cancer meds we use. Instead of throwing steroids at it forever we are looking into a drug that treats auto-immune hepatitis (that is how my liver is acting although it isn't testing positive for it) This would be a long term drug and have far less side effects than long term use of steroids.
We will be doing a liver biopsy the beginning of next week sometime to get a better idea of what is happening on a cellular level so we can approach it the best way. How they do a liver biopsy I have no idea. Let me just say I hope I get put out 100% for it, none of this conscious sedation crap! I should know more by the end of today.
I will also be going in tomorrow and getting my liver levels checked.
I have been pulled from my BRaf inhibitors/treatment for now. Couple reasons - one, I have to be off of them for at least 7 days before doing my brain radiation and two, my liver is obviously not happy about it. I am not looking forward to my tumors sprouting back up and it makes me nervous that I will most likely see some side effects from my lung tumors. I truly hope not.
While in the hospital I did a crazy treatment to prevent pneumonia as well as some other viral infection that people on prolonged steroids tend to get. I had to sit in a plastic shell and breath some crazy stuff and blow it out into a filter. It was strange to say the least, but if it helps me avoid a separate sickness I am in.
Cause this is the closest thing to smoking I have ever gotten.. ha.
Also, thank you SkullCandy for donating a ton of headphones to the hospital! What a bonus to get while staying there. Can't wait to try them out!
it's fo freeeeee
Wednesday, August 3, 2016
Stage IV
What I have fought so hard for 7.5 years to avoid is now a reality – I am stage IV.
I had scans early last month and the results weren’t good. The cancer has spread past my neck. I have a small tumor (4mm) in my brain and around 10 even smaller ones in my lungs.
Right now we are going to put our focus on the brain lesion and treat that with a one-time blast of radiation called stereotactic radiosurgery (SRS). This won’t happen for another week, most likely two, and I shouldn’t have too bad of side effects from it – fatigue mostly it looks like. The lung lesions are most likely undetectable now with the treatment I am on, but we won’t know for sure until the next scans which will be in another 4-6 weeks.
I also had an appointment today to go over the next steps (radiation, treatments, etc.) and to check my liver. Well, sadly my liver has spiked again and I am admitted to Huntsman once again for observation. For some reason my liver is not tolerating any treatment I am on so they are bringing on the hematology/liver team to hopefully figure it all out. For now, we have just thrown a lot of steroids at the liver and it worked for the most part but isn’t a long term solution (and my sanity and puffy cheeks need a break from them!) and we need to have my liver tolerate the cancer drugs. I feel so silly being in the hospital when I feel just fine but they are worried that the liver levels are going to continue to increase over the next 24 hours so they need to have me under observation (and some more steroids for the time being.) I will be here for at least a day they are thinking.
I have NO symptoms or side effects from either. No pain, no issues. I wouldn’t know they were there unless I had scans.
I have known since July 17th, so I have been sitting in the information and just processing things. I didn't want to post anything until I knew more details and I also wanted to enjoy the things I had already planned without being the center of attention and focus. I also didn't want it to be real, and once it is posted, it definitely is real. Thank you for understanding why I held on to the news for as long as I have.
This news isn't fun for anyone. It is the type of news that makes your best friend get in her car the next day and drive from California to see you and be here for you. It is news that you try and wrap your head around and realize that really will never happen.
What I do know is that this news wont stop me from living my life and carrying on. I wont put things on hold because of this change, I will keep on keeping on. Making plans as I can. Obviously priorities will change and re-position, but in a good way. Probably how they always should have been, Basically everything changes while nothing changes.
LaterBlog: Survivors at the Summit
On Saturday (July 30th, 2016) I attended Survivors at the Summit.
Maryann told me about it a day or so before and to be honest, I didn't want to go. With the new news it felt like everyone was fixating on things and I just didn't have the energy. It has been a crazy few weeks.
And then I snapped out of it. And realized it was 6 months since Mandy had passed away and knew this was bigger than me.
Survivors at the Summit is put on by the Cancer Wellness House and people attend and buy a prayer flag for someone fighting, has fought/survived or lost the battle to cancer. You are supposed to summit the peak however you are able - hike, bike, walk, or like us, take the tram up. There was a breakfast at the start and then ice cream and snacks at the end... Not sure riding the tram validated earning an ice cream but my prednisone/steroid ridden self didn't say no!
Maryann and the boys, Jack and Ben, came and they wrote on a prayer flag for me. We told Jack to write/draw what he thinks of when he thinks of me - and that is a pink elephant. Oh you sweet boy... haha. Pretty great actually, definitely a memory!
I made a flag for Mandy and then we made the trek (ha!) up to the summit. At the top all the flags were all hung and it was a site to see for sure. Kind of takes your breath away. It is hard to look at them all and think of how many people cancer affects. Basically everyone. No one goes untouched.
We sat at the summit for over an hour and I met a gentleman that talked to me about his battle with his cancer (super rare kind that I can't even remember it!) He was 4 years into remission and just was refreshing to talk to. Very nice.
Maryann also bought 40 raffle tickets for what was called the 50/50 raffle. 50% went to the Cancer Wellness House and 50% went to the winner. She made the mistake of telling me she would then give me 50% and guess what? She won! $546 to be exact! After taking out the cost of the tickets we are both $253 richer! We never win anything!! She was so nice for really giving me anything! We attempted to go shopping with the money but we both hate spending money, we did go to lunch though. I'll treat myself to something besides food I promise though.
Can't wait go next year and hopefully feel well enough to hike at least half of it. Goals my friends.
Maryann told me about it a day or so before and to be honest, I didn't want to go. With the new news it felt like everyone was fixating on things and I just didn't have the energy. It has been a crazy few weeks.
And then I snapped out of it. And realized it was 6 months since Mandy had passed away and knew this was bigger than me.
Survivors at the Summit is put on by the Cancer Wellness House and people attend and buy a prayer flag for someone fighting, has fought/survived or lost the battle to cancer. You are supposed to summit the peak however you are able - hike, bike, walk, or like us, take the tram up. There was a breakfast at the start and then ice cream and snacks at the end... Not sure riding the tram validated earning an ice cream but my prednisone/steroid ridden self didn't say no!
Maryann and the boys, Jack and Ben, came and they wrote on a prayer flag for me. We told Jack to write/draw what he thinks of when he thinks of me - and that is a pink elephant. Oh you sweet boy... haha. Pretty great actually, definitely a memory!
I made a flag for Mandy and then we made the trek (ha!) up to the summit. At the top all the flags were all hung and it was a site to see for sure. Kind of takes your breath away. It is hard to look at them all and think of how many people cancer affects. Basically everyone. No one goes untouched.
My best #mandyselfie
We sat at the summit for over an hour and I met a gentleman that talked to me about his battle with his cancer (super rare kind that I can't even remember it!) He was 4 years into remission and just was refreshing to talk to. Very nice.
Maryann also bought 40 raffle tickets for what was called the 50/50 raffle. 50% went to the Cancer Wellness House and 50% went to the winner. She made the mistake of telling me she would then give me 50% and guess what? She won! $546 to be exact! After taking out the cost of the tickets we are both $253 richer! We never win anything!! She was so nice for really giving me anything! We attempted to go shopping with the money but we both hate spending money, we did go to lunch though. I'll treat myself to something besides food I promise though.
Can't wait go next year and hopefully feel well enough to hike at least half of it. Goals my friends.
LaterBlog: Best Friend Visit
Last week (well 10 days ago) I had planned on going to lunch with my best friends mom - kind of like my second mom - and when I walked up to the restaurant I saw two little angel faces smiling so so big and then I saw my best friend, Ashley. Ash has lived in California for pretty much just as long
It was a very full visit and I tried to spend as much time with her and the girls as possible. We had some fun for sure!
We went to the zoo and fed the giraffes (check #31 off of my 35 before 35) which was so much fun. It was crazy hot though so that part wasn't too fun but animals just have so much calmness to them so it was fun to walk through and see the excitement on the kiddos faces. Kids make everything so fun and new. And I turn into a 5 year old around them so that doesn't hurt either. My friend from junior high gave us the VIP treatment throughout the zoo and made us feel so special - it was also great to catch up with her.
We also went to the Museum of Natural Curiosity - something I have wanted to do since it opened. It was a lot of fun as well but there were soooo many ppl there. I will have to go again when it isn't summer and everyone is trying to escape the heat.
Ash and I got to go grab food a couple times just her and I which is always nice too. She also cooked one of my favorite things - orange juice salmon. She made an incredible dinner for us and a couple friends, followed by a sleepover.
Orange Salmon Nicoise Salad... so dang good!
Other than that we just hung out and enjoyed being around each other. It is rare to find someone who you can just be you with. Do nothing and be content. That's a best friend and I truly have struck gold in that area. We made some vacation plans and I hope to get out there sooner rather than later. Plus I can't go without hugs from those girls for very long. It was so great to build our relationships, so much personality in such little humans. And man do they have my heart.
as she has lived her in Utah so we only see each other a handful of times a year. She was planning a trip up to visit but just didn't know when it would really happen. Well, after hearing my latest news she basically jumped in the car and started driving. Her and the girls made the trek up and surprised me at lunch. It was so great to see her sitting there and those two little ladies.
enjoying some after-lunch gelato
It was a very full visit and I tried to spend as much time with her and the girls as possible. We had some fun for sure!
We went to the zoo and fed the giraffes (check #31 off of my 35 before 35) which was so much fun. It was crazy hot though so that part wasn't too fun but animals just have so much calmness to them so it was fun to walk through and see the excitement on the kiddos faces. Kids make everything so fun and new. And I turn into a 5 year old around them so that doesn't hurt either. My friend from junior high gave us the VIP treatment throughout the zoo and made us feel so special - it was also great to catch up with her.
Armadillo fun! Thanks to Rebekah for spoiling us!
Pure joy!
hard to see but Perle was walking across the rope bridge...
Just eatin' a chicken wing
Mmmmm cake!
I mean those faces...
Orange Salmon Nicoise Salad... so dang good!
Other than that we just hung out and enjoyed being around each other. It is rare to find someone who you can just be you with. Do nothing and be content. That's a best friend and I truly have struck gold in that area. We made some vacation plans and I hope to get out there sooner rather than later. Plus I can't go without hugs from those girls for very long. It was so great to build our relationships, so much personality in such little humans. And man do they have my heart.
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