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.
After my last post things took a turn. My throat continued to be extremely painful, sore and practically raw. I got some lidocane rinse and it wouldn't hit the area I needed so it didn't help much. On Thanksgiving I woke up and just felt like hell. I had a fever of 101.5 and could barely speak. I had my sister call into the oncall oncologist and they said it was the ER for me. I was pretty positive I was dehydrated as well so I thought I'd go in and they would address the fever and give me some fluids.
Once there they drew labs and turns out my white blood cells were extremely low and I was nuetropenic. I was also malnurished and dehydrated. And I was then admitted up to Huntsman.
I ended up spending 5 days, 4 nights there and was discharged finally on Monday. They kept me mostly because of my blood levels and they had to treat my throat with IV antibiotics and antifungal meds. On Saturday they said I needed to get a feeding tube and so that's what I got. Although it is not the best or most comfortable it is what I need. I am on continuous feeds so that my system isn't overloaded. I will keep this in until after radiation is finished at least, and we will see how I do after those side effects subside.
too much like Trump so I had to hurry and shave it...
Saturday I also had my head shaved. Hair was falling out like no other and I just needed it off. We played around with the cutting and did a mohawk and some steps in the process. Now it is all but gone. Yesterday and today is the first time that I have worn scarves, it will be something to get used to.
Glam-Mohawk
The final product and Steps
I had a doctor appointment today and they said I am good to go forward with treatment and just reducing the dose of one of the drugs by 25% and that should help with the blow of side effects. Oddly, my liver levels are low now but nothing to worry about. Just funny that I went from such a high extreme to a low extreme. My white blood cell count is rising as well as my nuetropenic levels. Today I have more energy and feel better. Sleeping with the feeding tube has been a bit rough (have to keep my head elevated) but I'm figuring it out.
In other news, my friends and family are incredible. On Sunday I was having a really hard morning and had been told I wasn't going home that day and we needed to wait for a test result to come in. So already crying, I looked out my door and see my best friend Ashleys face popping in. She flew in from California to be there for me and man I bawled like a baby. She seriously showed up just when I needed it and made me feel better immediately. She stayed until Tuesday and helped out a lot when I made it home. She cleaned and helped get some items I've needed around the house and what not.
Fun SnapChat Messages
Love things like this!
Playing around on SnapChat while we visit
My sweet elves have also kept leaving surprises for me on my doorstep. I've gotten all sorts of fun gifts! Also my friend Ali (thacksmack.blogspot.com) "nominated" (I think she just paid for it like a sneaky lady!) me to have professional Christmas lights put up for me. I am really excited about it! I will hopefully be able to get my tree up this week as well.
Chemo is tomorrow and hope that things all go well and we are back on track with things.
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!
Last post was all medical - this is all personal and fun things.
Since surgery I have felt very good overall which has been nice. I started to drive 12 days after surgery and that allowed me to be free to do what I like and go to the store and all those things. Went to a movie, went to my friends sons birthday party and did a wagon ride, dressed up for Halloween, went to the last summer farmers market at Wheeler Farm, took the boys (Ben and Jack) out trick or treating in my sisters neighborhood (which was really fun), turned 34, got the keys to my new place and have started to slowly move in.
Social Butterfly
My birthday usually is a big deal for me but with surgery and the whole no eating fat thing I kind of was a downer about it for a bit. I never realized how food centered a birthday is until I couldn't have anything fun! In the morning I met up with little Ruby, her mom Ali and her sister Jane for some acai bowls and healthier food. It was fun to be goofy with the girls and of course to see sweet Ali. You can read her blog here. Since I got the keys early (got them on the 1st and was planning on getting them on the 5th) I had some friends over to the empty place that night and just ordered pizza for them and such. It was a lot of fun to have everyone over to see it.
Look at this pretty cake my friends got me - even though I couldn't eat it until the next day. My wonderful friend Elise also went out of her way to make me a sans free birthday dessert - strawberry shortcake. It was delicious!
Since then I have been slowly moving things in and we have movers coming tomorrow to load up my storage unit. I'm a bit nervous to see what I have in there... some of the stuff has never been used so it will be like Christmas! I'm still deciding on what I am going to do with all my Sweet Janes stuff. I'm torn on it - want to keep it but also don't want to just store things to store things. I am also not sure I want to close that chapter all the way. We will see. I have until the 30th to have the storage unit completely cleaned out.
Besides moving I am going to try and do some fun things before life gets shaken up on the 10th. Not sure what, but definitely will do something each day not medical or moving.
One thing I want to acknowledge is that there is a saying that you never know your true friends until you have to ask them to help you move. Well, I am overly blessed in the true friend category. I have too many helpers! How is that possible? I sure do love my army.
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.
Here in Utah the 24th of July is a state holiday. It is a day we celebrate the pioneers reaching the valley after a trek across the plains. Basically it is just like a second 4th of July. Which is great. I love fireworks so to get two days in one month to do them makes me happy.
Today was a full day and I definitely have been overdoing things. By the time I made it to the bbq I was spent, physically and mentally. It was good to see family and friends but dang my body isn't too excited with the heat and the busy energy prednisone/steroids makes me think I have.
Tomorrow is a new day and I am going to lay low and listen to my body like a good girl (I've been getting a lot of crap lately for being too on the go...)
As for now, happy Pioneer Day or Pie-n-beer day as it is also known.
My dad knows how to do a firework show - best home show around
I spent the week up at Snowbird, a ski resort that is open in the summer with activities and such. My best friends own a week long timeshare there and are so gracious to allow me to crash with them for the forth year in a row. Every year it has been so different as so much changes in a year.
It is so great to just escape the valley and heat and reality to a serene beautiful mountain where you can just zone out, go swimming, watch for animals or just hang in the room.
Top of the tram at Hidden Peak - 11,000ft; Salt Lake Valley straight ahead (Top), Heber (Bottom)
Jack is snorkling his heart out in this picture right above my feet
Morning routine
The view outside the room
As the week approached I didn't know how I would feel or where I would be in treatment. Orignially when I was on the Niv/Ipi combo I was scheduled to get my infusion half way through the week so in my head I was going to only be there for a few days. Obviously that has changed and I was able to stay the whole time - not sure they were truly expecting that but I did it! I only had a couple days and moments that I struggled but was able to pull through it. I used the spa pool and solarium a couple times and just relaxed and thought through things. My friends are crazy busy and have multiple small business constantly going so they had to come down to the valley almost everyday so I used that time to just relax and recoup. It was fun to watch their two boys enjoy their time on the rides and just be boys. They are getting so big and becoming their own little beings. It is fun to watch and just live in their simplicity.
Tell Jack what a selfie is...
Ben and Anton in the room hottub loving life!
Popsicles, SpiderMan, Selfies and Movies. This kid has my heart
We had groups of people come up practically each day/night and so that kept things lively and not so stagnant. Heading into the week I was worried I would hold back my friends from really doing things up while they were there since my stamina is non existent, my sun sensitivity is back and I'm extremely low on funds (I couldn't do the rides even if I wanted to anyways...) I don't think I got in the way, but I will never know for sure. Prednisone was a factor I know that, I ate everything! Ha! I told my friend she shouldn't have left me alone during my witching hours of 3-5pm... the chips just disappeared I swear! I am doing better at regulating it all but it is still a bit out of control. I'm hoping that once I taper lower I will see the water weight drop off and then I can work on the chip/treat weight.
My sungear in full effect!
Yes, this happened. Ha.
At the pool in the shade, under an umbrella. Also, where is the tumor?
My life isn't that bad if I step back and look at the giant picture. I just spent a week at a resort with my great friends because they are that nice to include me. When I started to have a meltdown, I went to a spa and stared out a wall of windows to a mountain side that had a family of deer on it. I was healthy enough to go for a week and enjoy as much of the time as I could. I watched two little boys enjoy all they could and play and swim their little hearts out. I spent time with my friends that I don't see too much cause our lives aren't intertwined as they once were - I miss those times but know that these times are just as important and have their own value. Was it hard to realize that I am now on the sidelines for real? Yes, but that doesn't change how I care about them as my friends and it just makes the memories a little different and may take a little more effort. They are worth the effort. Again, my life is actually pretty good, I just have this whole cancer bullshit to slap me down a couple times.
I am thankful for what I have, and for my staycation.
