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.
Lets just start of with some good news for once! Tumors are stable! Meaning they aren't growing and there aren't new ones (had scans) The lungs are a little questionable but the chemo I'm on can help with that. The brain lesions show a halo which is dying tissue. No new tumors in the neck - just one lonely lymph node trying to keep up with what we are throwing at it. Liver is normal. Burns are almost healed and no more feeding tube. More on those things later.
Chemo #3. Shirts came in too!
I had my third chemo on Wednesday and feel pretty good. I have morning nausea from the mucousitis so that has been amplified as well as the fatigue, but all manageable. I am hoping that most of my side effects I was having the last two rounds were more from radiation and the combination of coming at my body at all angles than just the chemo. Here's hoping. Especially since it is the holidays. I would really love to feel ok for Christmas. Right now I am doing alright and plan on spending Christmas morning as we always do, at my parents.
My burns look so so much better. I only have to wrap them at night now and only behind my ear because that was so bad, easily 3rd degree. It is close to being healed though thankfully. The rest of my skin looks good and all new cause as in all burns the skin peels. I will be honest, there was a few moments when I didn't really think I would be able to heal. I think it was more me being at my lowest. Just knowing it all needed time but I just couldn't imagine that time actually coming and going. But here we are and I'm healing up nicely.
#baldy and how it looks at this very moment
So the feeding tube... I had scans and my body already hates the contrast needed for them so to add not feeling well and then putting the contrast into my body that hasn't really had that much volume in my stomach for weeks, well it came up. As did the feeding tube. It was late on a Friday so I said I would try my best to get calories and nutrients in and keep them down for the weekend and if that didn't work then I would have it replaced on Monday. Well to my surprise I kept things down and outside of the morning nausea it hasn't been a problem. Eating is a chore and will be for some time as I am still re-introducing solids into the mix, but the fact that it isn't a tube hanging out my nose I am happy. Nothing has any taste besides lemons in water. I can have a super sweetened drink and it just tastes like water. It is so odd. Most things just taste like mush so it becomes a mental challenge. I am working hard at it though and hope that it gets easier each day. I think I am going to have a re-do of the holidays when things taste good again, get all the good things I am missing in! I also have a random list of places I want to eat when the taste buds awaken again.
Christmas eve is tomorrow and I want to wish all of you a happy and HEALTHY holiday! Thank you for following me on this journey and hope you share your holiday with those you love. oxoxo
Burn progression below....
12/10/16 3 days after last neck radiation treatment
Five days ago was my last radiation treatment and apparently this is when the side effects peak. That said, I easily have 2nd degree (partial thickness), maybe 3rd degree (full thickness) burns on a good portion of my neck. It doesn't help that today is also when my white counts are supposed to be the lowest (usually day 7-10 after chemo, but last time it was day 14 so I am assuming that since it is day 10 I am either going down or already there...) so my healing superpowers aren't what they usually are. That said, I have had the spot behind my ear looked at but it has progressed a fair amount that I felt I needed to be seen again. So far I have been using silverdene cream at night but not covering it (wasn't ever told to) and then cleaning it up throughout the day. Burns are tricky because they look so gross that you don't know if it is healing or infection. Luckily I am on antibiotics for infection so our bases are covered there. Regardless, I didn't feel like it was going in a good direction so I had a nurse visit today. And I was right. I needed a lot more of the silverdene cream and definitely needed a dressing on it. How do you put a dressing on the neck you say? (and you can't use tape because of the burned skin and I have a strong sensitivity to tape/adhesive #special) well you get a special turtle neck/choker/giant bandage. If I already didn't look sick, now people will be wondering what the hell happened to that girl! The nurse showed me how to clean and dress the area which was very helpful because I literally have been going off of YouTube videos... and they aren't too informative. I feel better having the dressing on and feel like it will help the healing process go a bit faster or at least give it a boost while my white counts are down. One thing that is good but bad is that due to my surgeries I don't have feeling/sensation for about 98% of the burned area. It is good because the pain would be substantial but it is bad because I don't have the sensations to tell me how bad it is and what areas are the worst (even though I have a good idea). I am doing all I can to avoid infection and another hospital stay.
My bandages and before the bandages... The worst part is behind my ear.
I got out of the house yesterday as well as today (besides the nurse visit) and am slowly regaining strength. I am trying to get out each day and walk a bit since it isn't good to just sit around all the time (because that makes me higher risk for additional clots) but with that said it takes a lot out of me. My throat (inside) is still so sore and swallowing is painful, so talking makes it a little worse. AND pain pills for some reason do not help with the pain, so strange. I am attempting to eat in addition to the feeding tube because the faster I can get back to eating regularly, the faster I can have the feeding tube removed. I'm a long ways from that though. I am basically only eating/drinking liquids and when there is more than just empty calories in it ie: drinks, then it usually comes back up. This could be part of the mucositis issue I've been having but if it doesn't improve soon then I will have to go in and figure out what is really happening. I know that I'll have the feeding tube for at least two more weeks.
When I am home I have been enjoying my amazing new couch and napping a good amount. I peruse social media mostly and have been watching really random movies on Netflix because why not. I am doing my best to not do too much and let my body rest and heal, also I get pretty nauseous when I move a lot or bend over a good amount. That said, I am putting on another random movie now and then it is early bed time for me cause I didn't nap today and did a good amount of things.
I would love to know where you are reading my blog from - I know that most is my family and friends, but I see a few people from overseas and would love to know! Leave a comment if you don't mind (and how you stumbled upon it!) Thanks for putting up with my long winded blogging!
I'm a nerd and love things like this. I just happened to look at my phone at 12:12 12/12. #nerd
Since finishing radiation on Wednesday I have put myself under my own self imposed quarantine... There is some gnarly sicknesses going around and I just can't risk catching whats going around. Most of my friends who want to visit have little kiddos who are sick too so I have kinda just been lounging at home on my comfy, cozy couch. I have rested a lot and am really trying to eat in addition to the feeding tube but it is proving very difficult. I am going to make an appointment first thing Monday to talk with the nutritional team and get a handle on the feeding tube things and see what else I can do to get more calories in me. Never thought I'd be forcing myself to get calories in me... always been the opposite!
Tonight I left the house for the first time since radiation and I needed to look at some things at the store and just get some walking in because I've been pretty stationary. I wore a mask because I am so so nervous of getting sick and landing back in the hospital. The past two weekends were spent there and I didn't want to go for 3 in a row.
Venturing out!
My friends have been so nice and giving - my fridge is full of every type of liquid you could think of! I'm definitely taken care of. I know a few have been worried about me being home and alone but things have been good and it has been nice to just settle into my place and relax and know that people are close if I need them.
Just some random selfies
Some of the hair is still hanging on, guessing it will all start to go in the next week from this last round of chemo.
My radiation burn is pretty intense and gross if I'm honest. Burns are just hard in general, but when it is on your neck it is hard to treat just because shirts hit it and you can't bandage the area so it is just weird. Doesn't help that the side it is on is the side I like to sleep on. I'm adjusting though. I am very thankful that from my surgery I don't have any feeling where the majority of the bad burn is so I can't feel how much pain I am in. I know that it is playing a factor into my energy level because my body is still experiencing that level of pain whether I can feel it or not. The parts I can feel are not so pleasant though. Hoping that things heal up fast, even with the drop in my numbers from chemo. Also that it doesn't scar. Here's hoping!
I can officially say I am done with radiation - 20 treatments done. I can't even explain the relief I have that I am done with them because they were so hard. The level of damage they did to me is up there with biochemo and that isn't easy.
Radiation has done such a number on me and landed me in the hospital last weekend once again. I woke up the morning after my second chemo just feeling awful. I actually threw up my feeding tube (not pleasant in the slightest) so I had to get that replaced while I was at radiation and my energy was so low that I knew I was dehydrated. I asked to get fluids and while they were working me up to see about fluids I spiked a giant fever, 104. Fever = admitted for two days. We weren't sure of the source for the fever as it could be multiple things such as lingering infection from the week before, the new bone med they gave me or the burn I had gotten from radiation. They also did a CT of my face/neck that showed I had a blood clot in my vein in my neck that is caused from radiation. It isn't the same as a clot that causes strokes or goes to your brain or such, but that my body will take care of it with the help of blood thinners twice a day. When it comes down to it we decided it was the burn that was causing the fever.
My artsy hospital shot
My burn is from radiation and is behind my ear. It was a giant blister that burst and then just is not good. The rest of my neck is burned now as well, but not to that extent. I have been keeping a close eye on it and treating it. It is good radiation is done because I don't think my skin could take more. It is all tanned and burned and starting to peel. The inside skin of my ear is burned as well. Just a lot going on for a body that is already weak.
My Radiation Completion Certificate, Mask and Flowers
Just some real feelings is all..
Little look at radiation prep
I did finish another chemo and felt really good that day and the day before. I truly think most of my side effects are from the radiation with just a bit from the chemo. They reduced my dose for one of the chemo drugs and I think that should help with my numbers dropping so low. I am laying low though just to be safe and not risk anything, and to let my body have a break from things and not land in the hospital again. While I was at chemo Intermountain Therapy Animals came and visited and I got to snuggle this sweet dog Luna for a bit. It was so sweet to just have her lay her head on me (something the owner says she doesn't do with people, that I was special haha) Hope that I see her again next time.
Luna
While I was in the hospital over the weekend my dear friends came in and decorated my house for Christmas with my tree and some decorations. They also did my picture wall and cleaned. My picture wall probably wouldn't get done for weeks because it takes a lot to do.. and there is a lot of pictures. They did a really good job and I was so surprised to walk in to a tidy and decorated house.
My elf deliveries continued as well - and man do they not disappoint! Today was the last and giant one and a bunch of people pulled together and got me the couch I had been looking at since moving. I have said it before but this time it's proven - my army is amazing! And sneaky! My couch makes it feel like a home finally and I can have people over and not be stressed about where they will sit. Now I have enough room for two people to crash if needed and that is helpful to know in case I need someone to stay with me overnight.
6th day
7th day
8th day (delivered secretly to the hospital even
9th day
10th day
11th day
12th and final day! And you can see part of the picture wall
I am eager to heal from radiation and hopefully get some energy back and start feeling better day by day. I plan on staying low key for the next week and hope that will help with things. I have been better at asking for help from friends on things like laundry and food and random things. Takes a lot for me to do so, but I know it is necessary.
My booster Tshirt campaign ended as well and it was so successful! Over 80 shirts ordered! Can't wait to get them. Thank you for all who donated and purchased.
Next up is scans on December 16th so here is hoping that things show improvement and that the treatment is doing what it is supposed to.
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!
