I'm a 34 year old Utah girl who is fighting stage IV melanoma for a second time. Former caramel queen and coffee slinger. Finding out whats next, one day at a time.
My friends and I love to travel together and when it started lining up that we could all make Portland work, we did just that and made a unforgettable vacation happen.
Four of us flew in on Saturday and got our rental car and drove up to Cannon Beach on the Pacific. It was stunning. The ocean there is different than in California and has a sense of calm and peace. It's misty and intriguing and just beautiful. The towns up there are quaint and homey. Welcoming. We stayed the night in Seaside at a cute riverside condo, got some amazing strawberries on the roadside, grabbed dinner, had more laughs than we knew what to do with, watched Goonies, went to the Goonie house; just made some great memories.
The next day we went to Multanomah Falls (since we couldn't remember the name we kept calling it Melanoma Falls) and it was beautiful. The girls walked up to the bridge; my body wasn't feeling up to the walk. Tyler and Spencer flew in that night and we had an eventful night grabbing dinner. An old friend we worked with lives up there now and met us for a drink and it was great to get a hug from him and catch up. We walked downtown, some interesting people watching for sure. The girls got some late night Voodoo donuts. "Keep Portland Weird" sign The staples.
Monday I was lucky enough to meet up with my cousin who lives up there for brunch. We had a great time chatting about our late uncle and laughing about good times. It wasn't until later in the day that Facebook reminded me that it was my uncles birthday. What are the odds that I'd be in Portland (where he lived and passed), having brunch talking about him, on his birthday. Pretty awesome universe. We hit up Powell's books, some more donut places and then a really great happy hour in the city followed by some tasty ice cream.
Tuesday was brunch and just random shopping around and then home. We were there for a good amount of time and I feel like I could have been there for another week and not have gotten bored - I would've gained some good weight with all the food, but not bored!
This trip was so memorable and I don't think any of us have laughed that hard for a long time, even if there was a little help. It was so great to have almost all my best friends in one town for one amazing trip. I'm so glad that Ashley made it on her buddy pass, Brooke could get work off and that Megg and the boys let me jump on their already made plans.
I have gotten that questions about 5 times in the last day so I guess I need to clarify what exactly is next for me.
In my last post I talked about scan results and the new tumor in my neck. Although this is new information it didn't change my treatment plan for now. I am still on the at home chemo which is the BRaf inhibitors. I take meds twice a day at home and don't go up to the hospital for treatment for now. We do monitor my blood work closely though - make sure my liver is behaving, my white count (nuetropenia levels) and my cancer growing marker (which is coming down thankfully.)
As of right now I have blood work this week and they will be discussing me at tumor board again this week. After that I have a follow-up/more blood work on May 2nd.
I am still on the pain patch, though we are working on lowering the dose and moving to just breakthrough meds. My pain is very minimal now which has been nice. My fatigue has improved and I can make it through the day without a nap most days (though there is a lot of being lazy.) Eating has improved drastically over the last week so I hope to stabilize my weight and hopefully stop losing more weight. Never thought I would be wishing to stop losing weight... Cancer does strange things to you.
Yesterday was Easter and I enjoyed a brunch with some friends and then a good family dinner.
Cousins *you can see my new tumor poking out, basically looks like a small Adams apple
This is a picture of one of my favorite kids (well he is 18 now...) and on his lacrosse helmet he wore my initials. Pretty amazing guy.
The last two weeks have been a roller coaster that is for sure. I finally got out of my fever/sleeping/aching and have been able to function semi-normal. Each day has gotten a bit better.
I decided to head to Park City with some girlfriends overnight and I had a great time until mid dinner when my stomach decided it was done. Luckily my friends are great and we just all went back to the condo and hung out and chatted. The day and night were fun and I got some great sunglasses, too.
I had my appointment on the 5th and the night before I just happened to put my hand on the front of my neck and felt a lump. About the size of a blueberry, but definitely there. These are the moments in this craziness that I just crumble and my mind races and runs. At the appointment we biopsied it and decided to move my scans up to the next day. We decreased my pain patch dose as that may have been contributing heavily to my extreme fatigue. I also had a followup with my neck surgeon and he officially "released" me from his services. Basically means I don't have to go back unless more surgery is needed/requested.
New tumor is in the middle/front of my neck (where the dots are)
That night I went home and bought a ticket to California to see my best friend. I needed to run away and just take a break from being the cancer patient. I knew that I could go down there and sit on her couch if needed and it would be good and make me happy. If I felt good then it was a bonus! So I decided to keep it a secret from her and surprise her when I got there. It was great to see her face and surprise! We had a great time and I felt really good the whole time. We ate a lot - even me! Went whale/dolphin watching on a fun small boat - didn't see any whales but a good amount of dolphins and it was a great time regardless. That night we met up with a friend we both hadn't seen since 10th grade! It was so much fun to get together and remenise about the crazy times we have had and catch up. The next day I was on my own while everyone was at work and I slept in and then went to the beach and around town. Although I was beyond tired each night I was beyond happy and it is all worth it. Also, they have a new pet pig that was a lot of fun to get to know and snuggle.
I had to fly back in time for my appointment today to go over scans. Talk about a downer to return for! The results are mixed as yes, the new lump in my neck is cancer but it has a different chemistry than the other tumors. This can mean that the cells are forming differently because of the treatments I've been doing (still am not clear if that is good or bad?) The tumors in my liver are larger BUT all the other spots in my body are smaller. So my brain, lungs, spleen and bones are all shrinking and responding to treatment. We decided to still "ride the wave" as my doctor calls it and stay on the same treatment (BRaf Inhibitors Mekinist and Zelboraf). My white count is low though and so I am nuetropenic so we did a dose reduction for that since we don't want to end up with a hospital visit for it. Overall it was a positive appointment and I am feeling good so I hope to continue on this upswing. I am liking feeling semi-normal again and having energy and an appetite. Also my hair is growing lots!
One sad thing is a blogger I follow (and 20k+ others) Dear Melanoma/Emma Betts, sadly passed away this week. She was 25 and fought stage IV melanoma for over 3 years. Many people tell me to not follow these people as it is just too sad. For me it helps me feel connected to people who are going through the same thing and bring in some reality of things. I may know too much about how the end days of this disease look like, but it doesn't scare me. I guess it just makes me more informed overall.
No big plans coming up. Trying to make it to Moab for a wedding at the beginning of the month. Going to try and work a bit. Do my taxes. Finish some things around the house. Garden/plant some things. All the random things.
I got to go and see my speedy friend be rewarding for being the fastest stair climber for the day and for the record.
It was for the OutClimb Cancer Challenge - a fundraiser for Huntsman Cancer Institute. He's a competitive guy and he was in it to win it and he did! The challenge was to run up 24 flights of stairs. He completed that in 3:03. THREE MINUTES! Isn't that insane? That's 7.62 seconds per flight. I'm super impressed to say the least.
There was also a record beat for times up the the stairs and it was 52 times for men and 50 for women. Pure madness and I can't imagine how sore their thighs and calves are still..
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.
I am officially over half way done with radiation on my neck and done with my SRS brain radiation. Thankfully time goes fast currently so radiation hasn't seemed too long. I will say it does get old having to go up there 5 days a week. This week, because of Thanksgiving, I went Sunday and then tomorrow is the last for the week and I get 4 days off. I really need it cause I am struggling big time with dry mouth, mouth sores and an inflammed throat. Imagine the pain strep throat on one side - it's hard. And dry mouth is not my favorite. It doesn't help that chemo also has side effects of dry mouth and mouth sores - so I am doubling down on that. I drink more water than I can even count. They prescribed a mouthwash for the pain but my insurance denied it ($160 out of pocket) so I guess it is going to be cloraseptic throat spray for me.
Neck Radiation (those are mouth guards)
Neck Radiation; you have to hold painfully still
Brain radiation wasn't too bad, just took some time. I got another mask made for it and was allowed to take it home. Not sure what I will do with such a thing, but it's a lot like a badge of honor. I will be allowed to take my neck one home as well. Both tumors were treated today and we wont know the results until late January with the new scans. I know that it is a possibility to do it again as well as Gamma Knife radiation. Side effects for SRS is usually just your current symptoms amplified. For me I am happy that I don't have any real side effects from the brain lesions. There is also possibility for swelling and being tired.
Brain SRS Radiation Mask
Brain Zapping Room
Brain SRS Radiation, again you have to hold super still
I also got the results from my bone scan. Sadly it wasn't what I had hoped. The area we were trying to rule out didn't show any disease which is good, but it showed areas of concern in my right femur as well as one of my lower right ribs. Apparently bone lesions are painful and I don't have any pain in my femur, but I do have pain in my lower rib. This pain I thought was my liver having spasms but that may not be true. Right now it is small areas and chemo should treat it for now. If not then we can do radiation. We will also be adding a bone strengthener to my next chemo infusion (December 1st, next Wednesday).
Bone Scan Report - Also you shouldn't leave me in a room with access to my charts cause I will mess around
The white dot on the top right is my largest brain tumor.
It has doubled in size since my last scan. 9mmx9mmption
This one is harder to see - it is top right on the skull line and super faint (which means it is super small and new)
Today was a hard, emotional day. Not only was I doing both radiations, I woke up to discover that my hair has started to fall out. There is nothing in the whole world that can prep you for this feeling - even losing it once before. I thought I was ready for it and knew what to expect but those first few hairs just rock your world. I don't know how fast it will be but I am most likely going to shave it on Friday, make it through Thanksgiving. I was thinking I wouldn't have to worry about it until right before my second round of chemo but it has come early. My scalp/hair folicals just ache and apparently that is a sign of it going. The area where the radiation hits is going in multiple strands when I brush and the rest is just a few strands. I can't face the clumps and handfuls this time. When those first few strands were in my hands I just sank. I think it just made this all to real, and just not on a good day (as if there is a good day for such a thing.) I have a few beanies I'm going to wear and then enrolled a friend to make some super soft fabric bandanas cause I know beanies aren't super practical every day. We will see how this all plays out because I've never had to deal with full baldness. It will be nice to not have to shave my legs for a few months though (yes, all hair on your body falls out.)
Regular and more fun talk
Moving and unpacking are finally coming along and things are looking a lot more home-y. I hope to start hanging pictures soon and get my "office"/second bedroom not looking like a random hoarding room. I still am without a couch but am hoping to get a good deal on black friday or cyber monday (or after when everyone posts their old couches for sale) I also am on the look out for a smaller kitchen table. I baked for the first time tonight and for a tiny, old oven it did a pretty good job. I made my oncology team and nurses some brookies (brownie/cookies) to tell them how thankful I am for them. Also to thank them for getting me to another birthday earlier on in the month. I also am officially done with my storage unit! After 2 1/2 years I am finally free of that annoying monthly payment for a room to store my random shizzz. Ahh freedom.
So dang nice! And so surprised! I needed a little tree!
Last night I was watching TV (it is nice to have internet and tv!) and it was around 9pm and all of a sudden a giant knock on the door, scared me shitless. Living alone and without a big scary sounding dog to warn you of these things can make you feel a little apprehensive. But I got up and turned on all lights and hadd my phone ready just in case and opened the door. To my surprise there was a handful of presents for me and a note. My friends - not sure who yet - have started a 12 days or radiation countdown for me. Talk about bringing happy and grateful tears to my eyes. I mean really. I know I have incredible friends, but this just makes me appreciate them so so much more. You all have shown up so much for me, especially these last few months. I'm excited to get that knock on the door now. So thoughtful. Tyring to figureout the handwriting... hahah
Tasty dipped pretzel rods, nice candle, some homemade zuchinni (I think) bread and a super nice adult coloring book with colored pencils.
I launched my Booster Tshirt campaign (see last post) and I am beyond excited to say that because of incredible people in my life and through here I have surpassed my goal and am still going! So so humbling. I am so excited to get them once they print, just in time for the holidays.
On this past Friday I went to an event I have only heard of and never actually gone to - Drag Queen Bingo. It is a fundraiser for the Bears Chapter of Salt Lake (a bear is a burly gay man) and this event was to earn money to do sub-for-santa for as many kids as possible this season. My mom, sister Sarah, Maryann and her mom Judy and Tyler and his new boyfriend Spencer all went and it was a lot of fun. They have fun and silly rules that help earn more money and it was just a excellent break from reality. One of the rules is no phones unless you are taking a picture, so I only have a couple pictures, but it was nice to not look at my phone for 2 hours. Ran into some friends there too, one who surprised me with some very kind words.
Didn't win anything but got the bird hat thanks to Tyler and Spencer
We got the Flamingo hat for my mom
My dear friends Clay and Elise got married over the weekend as well and I was so honored to be able to not only celebrate their love, but that I felt well enough to go and help do some things for them that night. I stepped into wedding cordinator mode (I didn't know many at the wedding so I thought I'd be useful) and I realize how much I enjoy party planning and leading. I really did like doing it all, especially for people I care about and have given me so much. Lets just say it was a perfect and flawless wedding, and the bride looked beyond stunning and the groom cleaned up nice. Gave me some hope for there really being true love out there. Makes me want that for myself, one day.
The stunning bride - sad we didn't get a picture with Clay as well though.
Life has definitely been eventful in many ways and I may have some down days, but that just is temporary and then tomorrow is a new day and things change. I can only control what I can control, and some days it's easier to accept than others. I am so happy that I am tolerating treatment enough to still be out and about, not everyone can say that. And as always, I am beyond thankful and humbled by my army of supporters, far and wide. I can never say it enough but you mean the world to me.
And just because they have my heart.
And as always I have rambled on and on and made a giant lengthy post. Oy, you all are troopers!
