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 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!
It has now been 4 days since surgery and I am attempting to type on my computer - so far so good but can tell it will be short lived.
With me for 4 major inpatient stays
Right before surgery I had to have a quick CT scan so there was a bit of a shuffle which helped keep my mind off of things. I definitely was emotional though. My friends sent me some great things to keep me distracted though - pictures of puppies, videos of my favorite little guys and then of course Justin Timberlake. Before I knew it I was out, didn't even get to the counting down part!
When I woke up I had this insane pain - in the heel of my foot! Like crazy pain, enough that I was kicking and screaming. Yes, screaming. I was relieved at that moment that I hadn't lost my ability to talk. But man my foot killed. It was most likely propped up at a weird angle for the 5 1/2 hr surgery and then once it moved and got blood flow it freaked out. Me screaming also meant that I was able to swallow as well. I then smiled and most of the smile works, just a bit of my lower lip is stunned and should hopefully come back. This happened with my last surgery and it took about 2 months to come back. Knowing that it will most likely come back makes it easier to accept.
Before surgery to compare
Before surgery to compare
WARNING - SCAR PICTURES BELOW!
Surgery went really really good. Dr. Monroe said he believes he got every tumor out as well as any affected lymph nodes. He dissected the old scar as well and was able to keep the new scar minimal. I made him take a picture of the tumors and show me them when I was awake - pretty insane. He was emailing them to me but somehow that got messed up. I hope to get them tomorrow to post. It was pretty interesting as some of the lymph nodes and tumors are black while the others were not. That's the melanoma in them. The scar is larger but the sutures/stitches are tighter so I am thinking it will heal even better than my last one. I have a drain that is working pretty well, having some minor issues with it but nothing too big.
Day One - right after surgery
Day One - right after surgery
Day Two - still in the hospital
I was in the hospital for 2 nights and now have been home for 2 nights. My oxygen level tends to drop when I sleep while on pain meds so we decided I should have supplemental oxygen at home for when I am asleep. It isn't too bad, I just hope it isn't a permanent thing.
Day Three - At home after a shower
Day Three - at home, after a shower
The pain isn't too intense - it is there for sure, but not what I had expected. There is a lot of surface skin nerve damage so I am not sure I am truly feeling all the pain that I am actually having, which is one benefit to nerve damage. I have been keeping up on a schedule for my pain meds and things haven't been too rough. I have some limited range of motion but I feel a lot of that is swelling and we can work on it to improve it. Swelling has been the worst the last two days so I have been trying to drink as much water as I can and move as much as my energy will allow - which hasn't been much. I have been sleeping a ton. I know you heal when you sleep so that makes sense, but man I'm exhausted.
This came in handy for my new diet! Just no chocolate dipped ones for me this time
They had to cut one of the bile ducts in that area that regulates fat in your blood stream so because of that I am on a NO fat diet. Like zero fat, nada. Not so easy to do when you can't chew much since most of the fat free (natural) things are vegetables. We are finding recipes and tricks though and for now the nonfat yogurt, cereal, milk and fruits have done ok. Basically on a dairy diet. Like I said, we are working on it.
And this note made me chuckle
And that is about all I can handle of holding up my arm to type, but I feel like I did a pretty good job!
I have been blocking out what is ahead of me for a bit. Sure I have talked about it and shared the possible outcomes but I have been making my mind think that the day may not really come, that the surgeon will reschedule or that some miraculous thing happened and they began to shrink on their own. Of course none of these things happened, but we are here. I have 20 minutes until I have to leave the house. Things have gotten real!
Today is the last day I will have these tumors that I have gotten so used to for 15+ months. Not that I want to keep them,I just don't really remember what it is like to not have them as a constant thing to focus on. And who would think that I would be worried about missing my giant scar? It is going to be replaced by another giant scar, just more giant-er.
My hopes for today are that things go smoothly and that there is minimal nerve damage and permanent issues. I hope that the scar is as minimal as it can be, considering. I hope to wake up and be able to smile and move my facial muscles. I hope to wake up and be able to swallow on my own. I hope to wake up without nerve pain (just pain from the surgery). I hope to wake up to good news and not bad. Lots of hopes.
For now I am going to try and focus and get the final things ready for this big, life changing moment. My phone is blowing up with messages of love and encouragement. This is what keeps me going and staying positive and being brave.
Miles for Melanoma Salt Lake City was on September 10th
and it was a lot of fun! Team #melafreakinoma was the largest (I think we had
53 people before the day of, more joined there!) and raised the most money,
just under $4k. Pretty impressive. Lots of sunhats and sunscreen, we even had a
small sunscreen sponsor – Naawk. It is a local sunscreen company and my friends
contacted them and they sent over a bunch of sunscreens and chap sticks. Pretty
great! My team was awesome and one of us even won the race by running it in
just under 18 minutes. He’s crazy and a machine. I also met some people from
Bristol- Myer Squib. BMS is the company that gifted me my meds after insurance
denied it. Amazing gift. I talked to the local rep for the company and he took
a picture of us. I introduced him to little Ruby and her mom as well. Bringing
awareness to all the people involved.
After the walk we headed to Urban Farm and Feed for breakfast which was super tasty and low key.
I would be lying if I said that I wasn’t overwhelmed that day. It is a lot to handle when you have a lot of people in one place all for you. I feel like I don’t get to talk and spend as much time with them as I’d like. I’m pretty spoiled to say that I am overwhelmed because I have too much support – but some days that’s how I feel. There are worse problems to have!
I want to thank everyone who helped make the day what it was. Hope that the money raised that day will help go towards some groundbreaking drug research.
Hello blog followers!
I knew I had been slacking on blog posting but didn't realize it had been over two weeks. . Sorry! I have been pretty busy though so I feel like I have a valid excuse - and it isn't because I wasn't feeling good which is great!
After the last post I started the liver med (8/18) and haven't had any side effects from it. After not even a week on the meds my liver levels went down by almost half! Pretty great news. They are currently still trending down but just not as fast as the first week, but moving in the right direction. When I started these meds I had been off of cancer treatment for about 2 weeks and my tumors had started to sprout in my neck once again. And they started to grow fast. First picture is 8/16, second 8/24, third 8/27.
As the tumors grow the more they press on nerves to then comes the nerve meds and pain meds. I had an appointment on the 24th with the neurosurgery radiation oncologist and messaged my general oncologists that morning and said that my tumors were growing like crazy and they should look at them while I am at my other appointment. Luckily they got me in and we decided we need to get me on a treatment asap. We decided to do a new CT scan and then have me presented at tumor board again that week. Tumor board is where my entire team (surgical oncologist, general oncologist, radiation oncologist and nurses as well as other people in the melanoma field) get together and discuss my entire past and what we should do going forward. It is a giant powwow with me as the focus. Apparently there was a very lively conversation about me and a lot of ideas of what to do and the best course of action. Now remember we have to still think of my damn liver and how it is responding to things. The end conclusion they came to is to restart me on the first BRaf inhibitors (Debrafanib/Mekinist) as I didn't have a liver reaction to this combo while I was on it. This will also shrink my tumors and reduce my pain. If all goes as planned it will give my liver some more time to heal and react to the liver meds as well as treating my neck (lungs and hopefully brain too). Then they suggesting that I meet with a surgeon to possibly have them removed once they get smaller so it is less invasive. As much as I don't want another surgery it may be good to get the "roots" of these out. Then after surgery I would follow up with radiation of my neck. This I am not happy about but at this point I have to put something aside and do all I can to fight this. I restarted the BRaf meds and the tumors started shrinking like crazy almost instantly, which means the pain started shrinking too. So great!
First picture is 8/27, second is 8/28 (Pretty crazy right?) and the third is 8/31.
As for my CT results, there was obviously growth in my neck. My lung tumors haven't progressed much if at all. There are still the 10 tumors, but they haven't changed much in size which is good. We also decided to postpone the SRS Radiation (brain radiation) for a couple reasons. One, I needed to get my pain under control and so we started these meds, and I can't be on them if I do radiation as it interferes somehow. Also we are still fighting insurance and the appeal can take around 30 days to get settled. I had a new MRI done and my brain tumor has grown by 2mm, so it is now 6mm. Considering how fast and large my neck grows (easily 5CM in weeks) this isn't much but it is still growth. We decided to be on these meds for 4 weeks and then redo my MRI and if it is still growing we will pause these meds and do the SRS (with or without insurance approval, we'll figure it out). The BRaf inhibitors have a 40% success rate of crossing the blood brain barrier so we will give it a couple weeks to do that and if it hasn't then we will treat the brain tumor with the SRS Radiation. The waiting will give the liver meds more time to work, will give the BRaf a chance to hit the brain and time for the insurance company to have some compassion and approve the radiation. As bad as it sounds to postpone treatment on my brain, it is actually in our best interest overall.
I have also started to taper down on the steroids again. If all goes as planned I will be fully off of them in two weeks. This girl is excited!
Wow, that was a long update! Hope you are still reading to this point.. if so, good job! I am going to be posting all the fun things I've been doing outside of cancer soon. And it is a lot!
As always, thank you for following this trek and all the ups and downs (not just the tumors!)
oxoxo
I was sent home with my port accessed.. that was an interesting conversation starter!
I am heading a team for the second annual Miles for Melanoma walk on September 10th at Wheeler Farm! I am excited to be part of this for a second year and to help this walk grow and get more attention. Last year was the first one and it was a pretty sad turn out.
My team name is #melafreakinoma, I figured they probably wouldn't like my signature hashtag so I toned it down just a hair.
If you feel like attending then you can join my team by going to the Miles for Melanoma page and joining my team. If you just want to fund-raise for me that would be great too! Last year I was the fastest fundraiser - raising over $400 in only a couple days! I have almost reached my team goal of $1000 which is great! Our team is currently #2 for the top fundraisers, I think we can beat the other team - but time will tell.
Thanks for all your help! I am working on getting some t-shirts made up too possibly, I just don't know if they would be done in time.
I got the liver biopsy results today and it showed drug related inflammation and the same characteristics of autoimmune hepatitis. As not fun as that sounds, it is actually better for me for the moment. Because it shows the same properties as a compromised, damaged liver I am ok to start a drug that is usually used for liver transplant patients. This drug is called CellCept. I can also start tapering off, yes off, of the prednisone (steroids) that I dislike so much. The goal is to get me off of the steroids for a couple reasons, one being the long term effects are large and the general side effects are a lot to deal with (if you haven't noticed...) and the second and main reason is that I can not start a new systemic cancer treatment while on steroids. If everything goes well I will be down to 5mg or off completely in 3-4 weeks. Goodbye chipmunk cheeks, extra water weight, irritability, ravenous eating, shaking hands/body and sleepless nights!
I also had my liver levels checked today and sadly they are elevated even more than I was when they admitted me two weeks ago, in the 700's. Thankfully they agreed that I could monitor from home and not be admitted to just sit in the hospital. I was worried that they were high again because I have been extremely tired the last few days and extra itchy (one of the signs that my bilirubin is higher than usual but I don't have any yellow discoloration). I don't have the normal symptoms of an elevated/pissed off liver like dark urine, yellow skin or eyes. If I start to see these things then I will go in, but even when I was at 1200 I didn't have these symptoms so I don't think it will be a problem. I am just happy to not be sitting in the hospital writing this!
I will start these meds as soon as my pharmacy fills them - most likely Thursday morning (day after tomorrow) I am hoping that the side effects aren't too intense and are easier to deal with than the steroids. We shall see.
So liver, I need you to work with me! Please tolerate and respond to this new med so I can move forward in treatment and not waste anymore valuable time. Just being off of a treatment for two weeks my tumors in my neck have started to grow. Who knows what is happening in my brain and lungs. I try not to think about it. Still no symptoms from those areas so I am hoping to keep it that way.
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.
Today is when I get my liver biopsy - and I'm not looking forward to it in the slightest.
I am hoping it is going to be fast and that I will have some sedatives.. I know they don't put you out but I don't respond to the conscious sedation well so we shall see.
This biopsy will help determine what is going on with my liver and hopefully give us some answers as to why it continues to stay elevated as well as why it isn't tolerating any drug/treatment we have been trying. The doctors said that it is acting as if I have autoimmune hepatitis but that I am not testing positive for it, so hopefully a closer look at the cells and such will give a better idea of what is happening.
After they look at the biopsy they will decide if I should go on a liver med or just continue the steroids. Ideally I will come off the steroids and the liver med will regulate my liver enough that I can start a new treatment and continue fighting the cancer. As of right now I am not on any treatment and can not start a new one if I am on steroids. We really need my liver to start shaping up!
As of three days ago my liver numbers were trending down but still high, about 8-9x the normal. They will check them again today I believe and we should see what they are doing.
Here's hoping it is a fast biopsy!
***Update***
Biopsy went well. It wasn't nearly as bad as I had anticipated which was a huge relief. They gave me mild sedation, which actually worked, so I wasn't too anxious as it was happening. The pain wasn't bad either. I think the hardest part was having to lay on my stomach for 3 hours after the biopsy to help stop bleeding.
Also I wanted to make sure everyone knows that they are not doing this biopsy to look for cancer - they are looking for reasons why the liver is freaking out when I am on treatments.
I decided to make another list of fun stuff to do - that people can do with me! My 35 before 35 isn't the most group friendly lists so I thought it would be fun to put together a list of the things I always say I want to do but never remember to mark out my calendar or make efforts to do. A lot of these are this month or next, before fall/winter hit so it will be a busy few weeks!
Hotel Huntsman (Huntsman Cancer Hospital) although very nice, is not where I want to spend my time. After one night there I broke out and was able to head home.
Liver levels stayed the same overnight basically so no new spikes which is good. Met with the liver team and we are going to try and figure out what is happening with my liver and why it is reacting so drastically to all the cancer meds we use. Instead of throwing steroids at it forever we are looking into a drug that treats auto-immune hepatitis (that is how my liver is acting although it isn't testing positive for it) This would be a long term drug and have far less side effects than long term use of steroids.
We will be doing a liver biopsy the beginning of next week sometime to get a better idea of what is happening on a cellular level so we can approach it the best way. How they do a liver biopsy I have no idea. Let me just say I hope I get put out 100% for it, none of this conscious sedation crap! I should know more by the end of today.
I will also be going in tomorrow and getting my liver levels checked.
I have been pulled from my BRaf inhibitors/treatment for now. Couple reasons - one, I have to be off of them for at least 7 days before doing my brain radiation and two, my liver is obviously not happy about it. I am not looking forward to my tumors sprouting back up and it makes me nervous that I will most likely see some side effects from my lung tumors. I truly hope not.
While in the hospital I did a crazy treatment to prevent pneumonia as well as some other viral infection that people on prolonged steroids tend to get. I had to sit in a plastic shell and breath some crazy stuff and blow it out into a filter. It was strange to say the least, but if it helps me avoid a separate sickness I am in.
Cause this is the closest thing to smoking I have ever gotten.. ha.
Also, thank you SkullCandy for donating a ton of headphones to the hospital! What a bonus to get while staying there. Can't wait to try them out!
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.
