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.
As many of us are faced with so many hard trials through life in general, let alone add in a stage IV cancer diagnosis, one thing you shouldn't be faced with is the possibility of losing your health coverage. Right now there are some dangerous bills floating around our government and it is important to share our stories so people know what they are voting on. I sent the following to my representatives in hopes to be heard and stop a dangerous change from happening. We shall see what happens. For now I know that I am covered for 2017.
"I am a 34 year old Utah native and I have stage IV melanoma and have been fighting for 8 years. I've fought through being declined insurance by four insurance companies for preexisting conditions/high risk when that was legal; then I carried "catastrophic care" insurance until the Affordable Care Act was implemented. My treatments are ever changing and prices range from $5k to $250k depending on what I have to do to keep fighting. I reached my deductible and out of pocket maximum on January 10th of this year. With the new American Health Care Act I fear my life will be in jeopardy as I am a preexisting condition, and an expensive one at that. I will reach the maximum lifetime limit quickly and will literally have to choose between life and death possibly, due to a vote you will place that affects millions of lives. Please put faces to your votes, not dollar signs, and show that you are an understanding and caring human that doesn't wish the worst on people. My name is Alexis Waters and I choose to fight to live and I want you to fight to allow me that right. I didn't choose this battle but I want the choice of how I fight to be mine, not the governments."
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!
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.
I got a letter from my insurance informing me that they have denied my brain radiation. So frustrating. The reasoning doesn't make any sense to me either. The reason is this:
"The request for stereotactic radiotherapy does not meet SelectHealth's Stereotactic Radiotherapy Medical Policy criteria. The information we received indicates that there has been progression of the cancer outside the cranium. Therefore, the request for stereotactic radiotherapy has been denied."
So basically it is saying that since it has spread elsewhere (my lungs) that they wont cover it. Now keep in mind that radiation or surgery are really the only options for treating anything in the brain.
The reason for this is the blood-brain barrier, your bodies own defense mechanism to prevent harmful chemicals and such from reaching the brain like chemo and such. Surgery isn't an option because of it's size (too small thankfully!) so this is truly the only option for treatment.
My doctors haven't said it is final and that they will continue to fight the denial and hopefully reword it in a way that things will be approved. Regardless I will be getting the treatment, we will just have to work it out and pay for it out of pocket. Insurance is messing with the wrong army and the wrong fighter for sure - I think they just think people will just be ok with these decisions and not do the treatments. Nope, not here.
It is currently 4:18am and I am lying in bed, awake. Sadly I woke up from the pain in my face from the swelling around 3:45am and took some Tylenol (I know I probably should take something stronger but oh well) and then have been trying to fall back asleep since. I have been thinking of the day ahead of me, what needs to be done; take jewelry off at home, what I'm wearing today, what time I need to wake up to start drinking the nasty contrast for the CT scans. etc. And then thought I should write a blog throughout the day as I have time. My day starts at 8:30am when I have to start drinking the barium sulfate contrast. I will drink that for an hour and a half leading up to my scans. I have blood draws/IV placement at 9:30. CT scan at 10:15. MRI at 11. Psych follow up at 1pm. Then have a break to get some food in me since I can't eat before drinking the contrast. My sweet friend is meeting me at the hospital to grab food since I have a bit of a break. After that I then have my appointment with my oncologist at 3:30. Here we will get the results from the scans and hopefully get some more answers about what is happening with my swollen and painful face. It is a long, full day.
Many people ask who goes with me to all of this and often offer to join me. I usually go it alone unless I know big things are going to be talked about, then I may invite my family up. Even then I'm reluctant. I have been dealing with all this for so long (7+ years, and then heavily for 15 months) that I just feel it is annoying to bring someone else along for the long waiting game. These are long, drawn out days. My appointments usually take 2+ hours and I feel that is a lot to ask of people to sit around with me. I don't like sitting through it, why would I ask for the busy people in my life to do the same? I also feel like I have to entertain them to a degree and that's not what I'm there for. I know it is silly, because if someone asked me to go with them I would be happy to spend my time waiting with them. Ahh the crazy role reversal.
I'm going to hopefully get some more sleep now and will update this through the long day ahead. Gotta love being able to do all this on my phone! 4:38am and back to sleep I go (or try at least!)
10:24 @ Huntsman
I just finished my CT scan and am waiting for my MRI. They were able to get my IV placed on the first try which is always nice as I am a hard poke. My veins are sick of being bothered. I ran into some of my previous nurses and they agreed that my swelling is most likely inflamed parotid glands, what we do for those I am not sure. They also find it strange that my previous IV/blood draw sites all are flaring up... My body is just not liking things right now. After the MRI I should be able to grab a snack before my 1pm appointment. Here's hoping!
12:16 @ Huntsman Bistro having a snack
All done with scans/MRI. It's always nice to have them done and out of the way for a while. My body really hates the contrast I have to have for them so that doesn't help either. Not sure how I feel about the scans, not sure if I feel like they are going to show progression or stability. The way I've felt the past 10 days gets my mind wandering to things I don't like but I try my best to not get too ahead of myself. I will say, no matter how many times I come up here I'm always in awe of the view.
3:06 @ Huntsman
Psych follow up all done. Pretty straight forward, went over managing anxiety related to everything and just options available to me as far as resources. Since my panic attack I've only had a few small anxiety moments but am able to recognize them quickly and calm myself down.
My dear friend met me at Starbucks at the U of U hospital and we chatted and had some mid day caffeine. Much needed - both the talking and the caffeine. She's dealt with cancer more than she should as well - losing her father and uncle within months of each other. She's a good person to have around and understands the cancer world and all it's craziness. She and I have become very close these past 15 months and I'm very grateful. Now just waiting to go to my final appointment at 3:30 to get results and answers about my face.
5:32pm @ Huntsman, still (in my car though)
I am finally done with my appointments. My last appointment was with my oncologist. Scans showed that my tumors have stayed the same for the most part since my last scans 8 weeks ago, no bigger but not smaller either. There are no new tumors and my brain is clear too which is great. Since I have basically hit a plateau and side effects are starting to pile up they feel the best thing to do is stop the BRAF inhibitors and switch to the Ipilimumab/Nivolumab combo. I'll go more into this in a separate post. This also means I can stop taking the prednisone which is great!
As far as my face swelling goes, they brought up a head and neck surgeon and he agreed that it is the parotid glands but said they aren't infected which is good. There is a very very slim chance it is mumps, yes crazy I know, but we still needed to do an additional test to make sure (which meant an additional blood draw since they took my IV out after my MRI). Regardless I can start to treat this at home with heat, massage and lemonheads. I can deal with that. I feel pretty good about it all for now but I am guessing I will start to think it all through more in the next few days. Right now I'm going to see a lacrosse game and a baseball game.
9:44pm @ Home
I decided to go see my friends daughter play lacrosse for a minute and then watched my favorite little tike play baseball, if you want to call it that. It was good to just decompress for a little bit. I turned my phone on silent and just enjoyed the simpleness of the night. Grabbed some dinner and now I'm home. I'm attempting to put heat packs on my cheeks but it is proving to be interesting in the least.
Processing the day a bit and will be heading to bed early tonight, as in when I finish this post.
It was a day. Not good, not bad, but a day. Happy to have it done and now have some things to move forward with and decide. Now let's hope the face swelling goes down quick and I can get back to looking like my normal self.
Today, February 4th, is #worldcancerday. It is a day to not only get people talking about cancer, but to acknowledge all those fighting - whether directly or indirectly. For the past two years this day has fallen close to some very prominent events. Last year I had just been rediagnosed and was getting things in line to start my fight again. This year I am still fighting and I just lost my dear friend to this horrible disease. February is just a very hard month for me it seems. I have major life changing events happen in February - whether I like it all or not. Regardless, World Cancer Day seems to fall perfectly into my cancer story. I am glad there is some more awareness being talked about.
I have been home sick for the past two days and I started to look at some insurance claims and looked at my new med costs. Oh. My. Hell. How are cancer drugs so insanely expensive?! I am so thankful for insurance - I truly don't know what I would do without it. Here are the prices:
My first oral meds - that I didn't finish keep in mind. I still have a 7 day supply...
Mekinist: $10,335.20
Tafinlar: $9,028.70
And my new ones:
Zelboraf (14 day supply): $4,934.49
Cotellic (21 day supply) : $5,910.29
Amazing right? I really should add up how much was spent on me last year, but I truly don't know if I could stomach it. It is definitely more than $750K, easily. That said, with insurance it costs around $550/month out of pocket. For my first month I have been set up on a copay card that brings the cost down substantially.
Anyway, thought it was interesting and so I thought I'd share!
Hoping I start feeling better soon (it isn't side effects, it is a stomach bug) and that life starts mellowing out around me soon. We shall see!
Well today was a rough one. I had my end of study appointment which concludes my receiving herpes injections into my neck every three weeks. I am happy about that! I am sad to not see my team of doctors and nurses every three weeks, but know I will see them lots while I am still getting treatment. They are like a little side family now that I see them so much!
Today marks one year since my first (and traumatizing) biopsy. A year since I knew something was wrong. I think my body/muscle memory kicked in and made me extra emotional at this appointment. I just am frustrated that I have been dealing with this all for a year+ now and still fighting – and that it is worse! My biopsy on Monday was better, still not fun or good, but they handle things much better here than my first one ever. I don’t even need drugs anymore. I still try and pretend I’m all tough, but regardless I am freaked out and end up crying a bit.
Today in my appointments I got some bad news. Not only has the insurance denied the combo drug, it also has denied the solo drug Keytruda. Their reasoning is that I am BRaf positive and need to complete the BRaf inhibitor treatment before starting anything else. This is the Band-Aid treatment I talked about a few posts back. My doctors and I agree though that I cannot wait for the appeals and claims to be completed to start a treatment and need to be on a treatment regardless of what it is. It is too dangerous to not have me on anything and it has been 4 weeks since my last treatment. So I am forced to go on the one thing I didn’t want to do. Although it will work in the short term – it is that long term I am concerned about.
Regardless they put in the prescription and I picked it up from the pharmacy today. I just have two bottles of drug that is supposed to be a cancer killer… So so strange to me. I just think if you are going to kill cancer then you should be a little more aggressive than a couple pills. But maybe they will kick me on my butt… who knows! I have chosen to start them on January 1, 2016. Start the New Year with some sort of new-ness.
The silver lining is that if the drug company does grant me free drug I can come off of this treatment and switch to that. And in the meantime it should shrink my tumors a bit which will help with the constant pain I am in. I really hope this is the case…
I had my MRI and CT Scans last night (8pm what?) and this
morning and also my appointments with my entire team.
The good news is that besides my neck, the cancer has not
spread. The bad news is that in my neck there are now 7 tumors, all growing. 7
f’rs. No wonder I have had so much pain lately, there isn’t any room for them
all!!
I officially withdrew from the clinical trial and had to
verbally state “I refuse drug today and going forward, I withdraw from the
study.” Kinda strange but I get it. Then all my appointments started. I was
happy to have my mom and best friend Ashley there for the appointments,
definitely helped break up the day and make time go faster. The doctors talked about the next steps and
drug options. I came into the appointment dead set on starting Keytruda and
hoping to start the following week. They then presented another drug option
which actually is 10% more effective than Keytruda. It is a combination of
Nivolumab and Ipilimumab given for 4 treatments (every 3 weeks) and then just
the Nivolumab after that for 2+ treatments. This works the same as Keytruda
alone, but with an added kick. It is also harder on your system – but also
harder on the cancer. There is also a third option after the combo or Keytruda,
which is a BRaf inhibitor since I am BRaf positive (a gene mutation in my
tumors). Although this has proven to be effective, it is only effective for
2ish years and then the cancer returns. It is more like a Band-Aid in my mind.
I have decided to go for the combo – and we are pretty sure
the insurance will deny the drug so we are going to petition for free drug if
that is the case. I should know in the
next day or so (but Christmas kinda messes up the timeline) but I will have to
see!
For now I have to do a biopsy for new drug and to end the
study. I hate them with a passion!! Hopefully it is the last one I have to do. And
that I start treatment next week!
Gotta start killing off these f’rs in my neck!!
****Update****
Well that was quick, they denied the combo drug within
minutes. The reasoning is cost and that I have already received one round of
Ipilimumab and it isn’t usually given more than once. We have now sent in an
appeal and a petition for free drug.
Hopefully we hear back soon on their answer.
So I have been waiting for the bills to come in from biochemo to see what the dent is. I am on my own insurance, Obamacare persay, that I got on my own - not through my employer. I am a full supporter of all the progress with insurance and Obamacare - without it I would not be able to have insurance due to a permanent spot on the “preexisting conditions” list (thankfully that has been done for a few years!) Regardless, I have good insurance that I am very happy with. Onto the rant…
I got the explanation of benefits (EOB) for chemo and was BLOWN AWAY! For one round of my chemo they charge the insurance $83.8K! Unreal!!! And the allowed amount is $50.4K… The difference is more than I made the entire year last year. Keep in mind I did 3 rounds of this… That’s $251.5K ($151.4K after the adjustment) in treatment… an entire house! A really nice one. So my upset is that if I didn’t have insurance how would I even come close to affording even one round - thus the flaw in the medical system. People would still (hopefully) get treatment and then claim bankruptcy causing the cost of health care to continue to rise or wouldn’t get treatment and succumb to the disease. Just sad.
All this said, I am not sure what my portion will be of this, just waiting to see. I feel so bad for the people who can’t afford the same coverage and treatment as I do. I am lucky that I have been able to have coverage my entire life (minus a short 5 months - and just not having it for that amount of time scared me too much).
I am scared for what the next president will do with the healthcare system, but hope I can keep my status as insured for the rest of my life.
