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!
I decided to launch a booster tshirt campaign to help me relieve the financial burdens of life during treatment as well as bring some awareness to Melanoma.
To support me on this - and to get a cool #melafreakinoma shirt, go to booster.com/melafreakinoma and see what shirt you like best!
Life has decided to see how much I can handle without fully losing it lately. And it has been a lot.
On top of moving into my own place (oh my, the unpacking is a disaster!) I had scans, appointments, the election, a tooth pulled, radiation consults, doctors appointments, radiation and chemo.
Lets talk about scans and results. Scans now are definitely more stressful just because I know there is disease and so it isn't a matter of if there is it is a matter of if there is more. Sadly on these scans there is more. My neck is looking good after surgery but there is a slight shadow that they need to rule out. What they are ruling out is whether or not it has spread to my jaw bone. In order to determine this I will be having a bone scan on Monday. I am not showing any signs or symptoms that this is what is happening, but again, we have to rule it out. As for my lungs they are stable still, unchanged. My brain has grown and there is an additional lesion. So there are two brain tumors in there. Both are small enough and in positions that I shouldn't feel any symptoms from which is reassuring. Because I now have a second brain lesion insurance has approved my SRS brain radiation and we will be doing that in the next coming weeks.
I went in to what I thought was just a trial run of radiation but ended up being actual treatment. There is a lot of lining up and measuring and such and then the actually radiation (if all goes as planned) is about 10 minutes. I have now had 3 of my 20 sessions. I can feel a little tightening in the skin and heat, so we shall see how the remaining sessions go.
You can see the impressions left on my forehead from the mask
Chemo was a long day as well but things have been good so far. I got there at 8:20 and drugs didn't start until 11:30. There are a lot of labs and pre-drugs you need to take before starting the actual chemo so things take a real long time. A lot of hurry up and wait. The chemo I am receiving is new for me and is called Carbo-Taxol, a combination of two drugs. It is a very common chemo combo (say that a few times fast) for many cancers so we have a good idea of what to expect. So far I have felt pretty good. I have been tired mostly and have some waves of nausea but it is all managable. Hair should be starting to fall out around the 30th I'm expecting, usually 20-21 days after infusion. Even though I know it is coming, I am not really ready for it. again. I know it will grow back, but it is just such a blow to my confidence regardless, no matter how positive you try and stay. I am happy though that it is going to be winter and I can wear warm beanies the whole time.
Now to the election. I am proud to say that I voted for Hillary Clinton to be the next, and first female, president. I was so beyond excited that I got to vote for a female to run our nation and was also excited the polls weren't too chaotic when I went. Emotions were high for everyone - on both sides so the day was a little stressful. I wore a silly shirt (Timberlake/Fallon 2016)
to lighten the mood which helped a bit. And then the polls started closing, and being called. And all you could see was red states/victories. Just like that I felt punched in the gut and America elected Donald Trump to be the president. I read the news when I rolled over in bed at 2:12 am and saw it was called and am surprised I was able to fall back asleep. In the morning it took a lot for me to get up and at 'em for my appointments as I just couldn't believe it. And then it hit me like a brick. I could be without health insurance sooner than later, all because of the person in office. I literally felt at that moment that he held my life in his hands. I have been beyond lucky to have not had to work full time or at all while fighting this fight and it is all due to the luxury of the Affordable Care Act (Obamacare) without it I was denied coverage for being a preexisting condition and I had to work in order to be covered at all. I just felt in that moment that I had been stripped of my right to fight this the way I want to fight it, to treat it as a full time job - kicking cancers ass. And so the tears came, and they didn't stop coming for a long while. I asked my doctors while they were telling me I may have bone lesions as well as additional brain lesions, what I will do if I lose my insurance? I know nothing happens overnight, but in that moment I felt less than, I felt like a target and in a sense a minority. I truly don't know the last time I cried that hard and for that long. As the dust has settled in the past 5 days since the election, emotions are still high and questions are still being asked. He has said he wouldn't appeal the entire law, and keep the preexisting conditions as a non-issue going forward, which is good. Still doesn't mean I am not still terrified for what is to come. I just know that I have to keep up my fight here and hope that it will be able to continue.
Things are finally getting settled in my new place and slowly there are less and less boxes to go through. I am still on the hunt for a couch but I have my bed and lounge chair so I am good for a bit. TV is up, just need to get the DVD player working and get some internet finally and we will be in business! My family and friends have been so great and helpful with everything, seriously would be a disaster if it weren't for them.
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.
It has been three weeks since surgery and things are going pretty well. The scar is minimal and the swelling is still going down. I have had many people say they feel like it is much better than my last scar. Um, thanks? I knew it wasn't the pretties scar but I guess to have others tell you that is kinda weird. But regardless, it is healing very fast and looking good.
Now the drain...
I am not a fan of drains. It is a love hate situation. I know you need one and it is helpful and all but man they kinda suck and especially when they don't work how they are supposed to. Mine stopped draining accurately about 6/7 days in. A lot of the drainage wasn't going into the drain but was leaking out of the hole entering my scar. Gross I know, but I would say 25% was going into the drain, the rest into bandages/gauze's. By day 12 I was done with it and luckily the nurse pulled it. Lets just say it definitely wasn't working and was practically completely clogged. I was told to express the buildup liquid at home and so I did. And I filmed it. Yep, totally did. So if you like gross weird videos you can see it here: https://www.youtube.com/watch?v=C9wX0Ec7zRk I have had some redness in the last few days so I stopped in to have it checked today and they had to puncture it and drain it as well. I am on antibiotics and hopefully it will stop accumulating soon.
The white part is what was inside... crazy!
Just a bit special. Drain issues.
Liver
My liver was really good - legitimately normal while I was in the hospital! So exciting! But... then spiked into the 200's again a week later. Now it is trending back down, without any additional meds. They assume it is from having anesthesia as well as some of the anti-nausea and pain meds given. I just have a super sensitive liver now and forever it seems.
Diet
Since they had to cut the bile ducts in my neck, I was put on a strict NO FAT diet. Yep, no fat. nada. Not even supposed to have a gram! The reason is because fat processes through those ducts and in order for them to heal fully there needs to be no fat circulating through. I.e. no fat. It was torture. So many things have fat in them, and the things that don't like vegetables are really hard for me to eat/chew still. It's was an adjustment to say the least. Best non-fat find to date? Grandma Sycamores WHITE BREAD! And delicious, foamy nonfat chai lattes. Today the doc gave me the go ahead to have fat! Pretty excited to say the least! I actually had a break in appointments after and him and I were getting lunch at the same time so I got to share my fat-full meal (blackened salmon salad) with him and get to know him a bit better which was nice.
I received the pathology report as well. There was 38 lymph nodes removed, 14 of which had melanoma in them. I guess the large "tumor" was a grouping of matted lymph nodes, not just one big tumor. And that "numerous lymph nodes are grossly positive with tumor." There is something about reading about what you have that makes it that much harder. Although I know it is real, it is that much more real when it is on paper in front of your face. Never fun.
Now on to the plan. I will be doing full radiation on my neck starting on November 10th. This will hopefully kill the remaining cells left behind after surgery (we knew going in that it was impossible to get clear margins/all the cells). Radiation will be 20 sessions. Radiation is done everyday, Monday - Friday. I am not sure yet how long each one takes but I would assume I will be up there for about 1-2 hours each time. Planning today went well and I feel alright going forward. They made my mask as well as gave me my first tattoos, three of them. They are little dots to mark where they need to line me up each time. One on each shoulder and one in the middle of my chest. Primal style with ink and a single needle.
The center of the "X" is where the tattoos are (not the full ink you see here)
I was also presented at tumor board again (yes, I am told I am a "frequent flyer" there) and because of the cancer being so aggressive I need to hit it from two ways, and the options for that is chemo. The name of the chemo drug is carbo-taxel and it is able to be given while you are doing radiation, unlike all the immunotherapies that are the other options. This is an 5 hour outpatient infusion chemo that is given every three weeks, up to 6 times, and I am starting that on November 10th as well. And yes it is a make you sick, lose your hair kind of chemo. Right when my hair was really taking on some character. To compare it to my other chemo regimen, this is 2 drugs where the biochemo was 5 drugs at once. I'm hoping I tolerate it well. I had my ugly cry about it and my restless nights (probably just the beginning of those) and now am pretty ok with it all. The timing just sucks, but when is there a good time to start chemo and radiation, or a good time for cancer? The answer is never.
Brain radiation is still in the works, that's about all the info I have on that. Hopefully will find out more soon.
New scans (CT and MRI) on Friday the 4th.
I learned yesterday that one of the people I would always bump in to up at Huntsman (his wife is the mom of some of my childhood friends) passed away from his stage IV lung cancer, diagnosed in May. So hard. Last time I saw him he was having a hard time overall and it just makes me sad to see how many people are affected by this damn disease. Oy.
Here's to treatment options 9 and 10!
Here is a recap:
Surgery #1, Biochemo, HF10/Ipi, BRaf #1 Mekinist/Tafinlar, BRaf #2 Zelboraf/Cotellic, Nivolumab/Ipi Combo, BRaf #1 again, Surgery #2. Now radiation and chemo.
