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.
I'm talking about my two new tumors on the front of my neck. Yep, two. They are small (one you can't even see but I can feel it) and they aren't growing fast. But they are growing. This means they aren't responding to the systemic treatment (BRaf Inhibitors) so we need to attack them in a different way. Sadly, that other way is radiation. I was told this was the next option over a week ago and it took me a bit to be alright with it and tell people. Tuesday is when we confirmed that that is the best option going forward. They did ask me what I thought (which they do with all treatments since I control the situation for the most part) and I said "you will never hear the words 'I want radiation' come out of my mouth, so this decision is on you to tell me I am doing it." My doctor said it was a no brainer decision from him as radiation worked on the other park of my neck (for the most part since only one small tumor remains) and having a break in the BRaf pills has actually proved to be more effective in the long term. In order to do radiation I need to be off of the BRaf and do what is called a "washout" which basically means time for it to leave my system, for me that is 7 days before and after radiation. I will find out Monday the plan for when to start radiation and stop the BRaf as well as how many treatments I will be getting. I also will be getting a new mask made and possibly more tattoo markers. They feel that I most likely will not get as many treatments as I did last time (20) and will probably get 5-10. If this is so, then my side effects should be much more mild in comparison. Doesn't hurt that I wont be doing chemo at the same time, like last time. My body will be able to stay stronger through this than it did before, or so I truly am hoping. Good hell I hate radiation though...
Pointing to the second tumor. The bump that looks like an Adams apple is a tumor as well
That said, I may be speaking to 7th and 8th graders about my radiation experiences in the coming weeks. I have wanted to speak to younger kids about my melanoma in general but man it is a lot to tell! My friend is a science teacher and he suggested to narrow it down (and try and connect it to science) and so I figured radiation would be best and it has the most show and tell props (mask, burn pictures, tattoos, bald spots... you know the works!) I hope to do this in the next few weeks before school is out for the year. Better get my butt in gear!
My hair is growing super fast which is great. As of April 1st I decided to not wear a beanie/hat at all times and that seems like ages ago. I got some steps shaved in and those are pretty much out grown. I have taken a picture each Sunday since the new little hairs started to come in and now have 3 months worth of pictures and it is pretty amazing to see the change. Still holding out for curls though!
Life has gotten a bit more regular. I have had a good amount of daily energy where I don't require a nap each day. I also have had my appetite back and actually am tasting things again. It has been nice to have food that actually tastes how I think it should. It's been a long time coming for sure
I have been getting some things ready to plant in my yard and am excited to watch it all grow, going to plant them this week sometime now that the weather is warmer. I have been seeing a good amount of friends and enjoying feeling good again!
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
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!
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!
I finally decided to chop all the straggly long hairs I have been holding on to since losing practically all my hair during biochemo. My hair has started growing pretty fast so the new hairs started to take over and make the longer hairs seem like a Trump combover. Not a fan. So I cut it all the same length and to my surprise I actually really like how it looks! I know there will be a lot of awkward lengths ahead, but I'm interested to see how they all look, and what ones I will like! Here's to #shorthairdontcare!!
It has been over a week since my last treatment (injection/infusion) and I am feeling so good! I haven't had any side effects besides some fatigue but I don't really count that. I am hopeful that I will continue to not have any and things just keep going as good as they have been. It is really a great feeling to have energy to do things and not be sick. I feel like I am starting to have a handle on my life again, which is a great feeling after 8+ months of dealing with my cancer returning.
My hair has really started to grow - I didn't realize how much until I took a picture of it and compared it to one I took on 7/22. (2 1/2 weeks ago) Here are the pics..
7/22/15
8/7/15
It's amazing how much I lost but I am still thankful to have some of it left. My doctor said that I lost more than most people who go through biochemo. It's not a ton, but they are baby hairs and they are there!
Here is a picture of the tumor(s) and the size they are today. .
All in all things are going good and I couldn't be happier. I have two more weeks off before the next treatment and have some fun things planned.
Wednesday I had my third treatment and all went well. Last weeks injection made me super swollen and huge, this one not so much which is nice. Hopefully that doesn't mean it isn't working as good.. but we shall see. The injections haven't hurt really thanks to me not having any feeling on that part of my neck due to surgery. It has been a bit tight from the swelling and I can feel it inside my throat it was that swollen. This round isn't that bad. Next week I have my next infusion of Ipi and I am supposed to start feeling more of the side effects after that.
One fun thing that started on Monday is my hair is starting to grow back from chemo! My friend pointed it out and I told her that was a mean joke to play on me, but when I looked it really did start that day! It will be a slow process but I can see a dark hair in each follicle, it's a start! I'm excited to see what it is going to grow back in as... curly? a different color? We shall see!
I went to Bear Lake this last Monday for a night. It was a good getaway. I went with Maryann and Marty and their two boys, Ben and Jack. We camped and went to the beach. Had some food and just relaxed in a beautiful setting. I was pretty tired when I got home but it was worth it.
Today is Pioneer Day in Utah and I'm looking forward to my dads insane firework show tonight. He is a nut and has some of the biggest and scariest fireworks - it's great! I love big fireworks and it is always good to have the whole family together.
Tomorrow I am hopefully going to California to see my best friend until Tuesday. I am flying on a buddy pass so here's hoping I get on the flights! Her cousin, aunt and mom are visiting too so it will be a fun group of people. I need to go to Cali every 6 months or so for my sanity.. I am overdue. It will be good to get out before more side effects kick in.
I may have cancer but cancer doesn't have me. I will have as much fun as possible as I feel better. On to the next adventure!
Tumor borders
Extremely thin hair but with lots of little guys coming in - especially in the front!
(scar on my scalp is from my first round of Melanoma in February 2009)
