Scanxiety

The never dull life of a stage IV melanoma patient...
This week I had my scans and appointments and chemo scheduled. I don't know if I have been as anxious about scans as I was this time around just because it holds some solid weight in what the next options are. Although I have been feeling alright with things and haven't felt any new tumor growth in my neck, you never know with the rest of your body.
I was able to get down the nasty contrast they make you drink and was able to do the scans without problems luckily.
My appointments were early the next day. Turns out that I am stable again which is great news, just besides my brain. There is some toss up as to whether my first brain tumor hemorrhaged or is just flaring from the treatment, but either way is larger. I am not having any side effects in relation to that so we will just continue to watch it closely. My lung nodules are the same size if not smaller and then my neck has just one area that we are going to biopsy to see if it is tumor or scar tissue. It is around my parotid gland. With all this news we decided to no longer do the current chemo regimen and switch to Keytruda (Pembro). This is the drug that Jimmy Carter was on and has kept him in remission for almost a year now. We have avoided going on this because of my sensitive liver but the doctors say that hopefully since resetting so many cells that it wont be as sensitive now but we will continually check my blood levels and see where we are. Keytruda is also the very last approved treatment for my cancer. After this it will be me going back to other options or adding clinical trials to the mix. My insurance is pushing back on it right now but we are hoping to get it approved and start treatment next week.
Although I am excited to see how Keytruda works for me I am also very nervous about my liver and this being the last option technically. Just puts worry into my head. My liver now is great and actually low so that is a good starting spot. I will be happy to get my hair back too, can't wait to see the little hairs start growing again! I should also feel pretty good on the treatment in comparison to chemo so it makes me hopeful that I can begin working again and just getting back to life. Chemo life isn't so great, it's a very tired existence! The treatment is given every 3 weeks by outpatient infusion and I can be on it for up to 2 years. Treatment option #12 I'm coming for you!

Monday also marked one year since Mandy passed away. Definitely a bittersweet weekend and day. I had dinner with her mom that Saturday and then was at the hospital on Monday when they came to do a pay it forward to the people on the 4th floor. It was so great to see them all and get hugs on that day in particular. They have been so great in my journey that I just can't imagine it without them. And I really can't believe it has been a year already. I am planning on getting some glitter nails or something done this week to just have the reminder of that sweet girls smiling face (and now that I don't have anymore chemo planned I can have them done again! Who'd ever think you shouldn't get nails done if you are on treatment?!)  Love you Mandy.

As for the rest of my life there isn't much going on. I have been trying really hard at eating and keeping weight on but it has been really hard. I lost another 5lbs in 3 weeks. While I am loving shrinking and all, I know it isn't a healthy weight loss so it isn't ideal. Also there is a high chance of steroids in my future so I can't get too used to this smaller figure. Things just still aren't tasting like much and then things I liked 2 weeks ago aren't good now and it is just weird! Still working hard on it though.
I am also trying to get my second bedroom/storage area all situated and organized. I am completely a hoarder that doesn't know what to do with some things. Lets just say a WHOLE lot has been donated!
I got some fish ... then they all died... so I got a single betta. Gus Gus is doing good so far, almost 5 days in and going strong!

Also it is the last day to order the #melafreakinoma shirts from booster.com/notjustskincancer  they are so dang comfy that there has been 4 or 5 people ordering doubles! Yay for awareness and comfort!

Chemo #3 And a Merry, Stable Christmas to All!

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

12/12/16

12/13/16

12/16/16

12/17/16

12/19/16

12/23/16; 16 days after last radiation treatment

One chemo and 3 radiation visits down...

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.

All things medical

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.

Surgery Day

Today is the day, surgery.

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.

Here we go.

Brain and Liver Update

I can't believe I didn't do a blog on this already... I'm a bit scatter brained lately. Guess we can pretend it is the brain tumor but after finding out it is SMALLER it is not as likely. Yes, it is smaller! In one month it went from 6mm to 5mm. This is very good because it wasn't thought that the meds would reach my brain lesion so to have it shrink in a month is impressive. My doctor was shocked it had shrank so much without radiation. That said, we are still pursuing the SRS radiation. The hope is to do it after my surgery is done and I have healed a bit. Hopefully in the next month.

My liver is down even more as well! Both are only 10-20 points about the average numbers. It was a good appointment for sure. They are having me stop the meds (as of two days ago) to see if the numbers continue to stay down. I will find out tomorrow (or the next day) whether or not they are still down. If they are still down then I can stay off of the CellCept (liver med) and just monitor the levels.

I really like when appointments have only good news in them, I could get used to that!

Busy two+ weeks without a blog update = super long update

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! 

Stage IV

What I have fought so hard for 7.5 years to avoid is now a reality – I am stage IV. 

I had scans early last month and the results weren’t good. The cancer has spread past my neck. I have a small tumor (4mm) in my brain and around 10 even smaller ones in my lungs.

Right now we are going to put our focus on the brain lesion and treat that with a one-time blast of radiation called stereotactic radiosurgery (SRS). This won’t happen for another week, most likely two, and I shouldn’t have too bad of side effects from it – fatigue mostly it looks like. The lung lesions are most likely undetectable now with the treatment I am on, but we won’t know for sure until the next scans which will be in another 4-6 weeks.

I also had an appointment today to go over the next steps (radiation, treatments, etc.) and to check my liver. Well, sadly my liver has spiked again and I am admitted to Huntsman once again for observation. For some reason my liver is not tolerating any treatment I am on so they are bringing on the hematology/liver team to hopefully figure it all out. For now, we have just thrown a lot of steroids at the liver and it worked for the most part but isn’t a long term solution (and my sanity and puffy cheeks need a break from them!) and we need to have my liver tolerate the cancer drugs. I feel so silly being in the hospital when I feel just fine but they are worried that the liver levels are going to continue to increase over the next 24 hours so they need to have me under observation (and some more steroids for the time being.) I will be here for at least a day they are thinking.

I have NO symptoms or side effects from either. No pain, no issues. I wouldn’t know they were there unless I had scans. 

I have known since July 17th, so I have been sitting in the information and just processing things. I didn't want to post anything until I knew more details and I also wanted to enjoy the things I had already planned without being the center of attention and focus. I also didn't want it to be real, and once it is posted, it definitely is real. Thank you for understanding why I held on to the news for as long as I have.

This news isn't fun for anyone. It is the type of news that makes your best friend get in her car the next day and drive from California to see you and be here for you. It is news that you try and wrap your head around and realize that really will never happen. 

What I do know is that this news wont stop me from living my life and carrying on. I wont put things on hold because of this change, I will keep on keeping on. Making plans as I can. Obviously priorities will change and re-position, but in a good way. Probably how they always should have been, Basically everything changes while nothing changes. 

Scans today

Today is scan/restaging day.
Whenever you change treatments they like to have new scans so they can have a new place to compare progress to. My scans were originally scheduled for later this month so they got moved to the next available, which happens to be a Saturday afternoon. Had some other plans, but that's the life of a cancer fighter - plans aren't really a thing. You can try but you always know that something may alter the plans or you will wake up sick as a dog. You never know.

I haven't really thought much about these scans - the anxiety isn't really there so much. If I'm being 100% honest I wouldn't be surprised if it has spread somewhere else, but I don't like to think that. I have been so lucky to have it stay localized that I just wonder how long that run will last. I truly hope that thought isn't true but it's always a possibility.

Scans never used to get to me. It was just something I did every 3 months, then 4 months, then 6 months, then a year. Now back to 3 months (or more!) They came back clear for so long that I just got used to it. Now I know there are tumors (just my neck) so I know they aren't clear but they could be worse. Now I either have major anxiety or none at all. So strange.

On a good note, I started my new/old treatment on Wednesday night and now on Saturday I can see a noticeable difference in the tumors sizes. Smaller and so much more comfortable. I haven't taken a pain med (besides ibuprofen) since Thursday, which is huge. I was to the point I was talking them every 4 hours on the dot. So great to have relief. I'm still not fully pain free and sadly will be taking a good amount of pain meds for my scans since I can't lay flat without it freaking out... Having my sister give me a ride today which is new. I usually go these things solo, but taking pain meds I don't want to drive. I'm being smart - asking for help. Strange I know!

In prednisone news, the water weight and moonface kicked in yesterday. Woke up so swollen. I took some pictures out with an old friend and it took all my might to not be devastated looking at the pictures and how heavy I look in comparison to a week ago. The steroids make you ravenous and literally uncontrollable urge to eat everything in site. It is unreal and so hard to curb. My witching hours are 3-6. That's when it hits the hardest and everything in site needs to be tried. I have done my best to have sensible snacks around but man it is hard! I know water weight will go down once I stop the steroids, but the added weight from the ravenous eating won't be so easy. Really trying to control it. I am down to 80mg (started at 120mg) and will continue to taper as long as my liver enzymes continue to lower. At this rate I will still be on them in 5 weeks. Talk about a summer of roid rage! I will learn the tricks to deal with it, just have to work at it all. I do like the energy it gives me, even though it is false energy. I don't like when it is crazy anxious energy though, that's happened two days this week. Not a fan. Also it affects my sleep so now I'm on sleeping aids, necessary evil. I haven't talked to Oprah or slept are/drive or anything which I'm taking as a win. Each day is different.

Random exciting other things:
Going to Yellowstone in August and am really excited
I am looking for a place to call my own. Renting, looking for ideally a 2bedroom place. Keep your eyes open for me - no apartment complexes though.
I'm going on a staycation to Snowbird tomorrow and am making some fun treats for us to have (prednisone driven...) I get excited to cook when it is for other people. Planning on making smore bars and a tasty fruit tart. Yum!

Hope this weekend finds you playing and laughing and escaping the sad news of the world. This life is tough but it has so many little things to be so grateful for. Like making a fruit tart for friends - which really boils down to I am happy I have the energy to make something, that I can make it, that they will enjoy it and that I enjoy them enjoying it. Little things.

Oxoxo

Day One, Treatment Option 6 aka Treatment Option 4 act 2

Today is day one again. I have started the BRaf inhibitors once again so that I am on a treatment while we wait for some other options to be available. I am eager to see these start working as fast as they did the first time around and get some pain relief. Like I mentioned in the last post, it is getting a bit uncontrollable.

I had my liver checked again yesterday and the enzymes are coming down still, just very slowly. One is 118 (3x too high) and the other is still 400+ (supposed to be 60). They are coming down which we want but the longer they are up the longer I am on steroids. I know I am complaining a lot about the steroids, but man it is something else! Yesterday I was wired and in my form of "roid rage" for sure, just uneasy and buzzing. Don't like those days.

Scans/Restaging has been scheduled for this Saturday (exactly how I want to spend my afternoon) so here's hoping that things are still localized in my neck. Scanxiety is a real thing, and I am blocking it out until that day. Which I have realized I will have to have some sort of sedation for since I can't lay flat for that long without my neck burning a hole in my head... That should be interesting!

One thing to mention - I am sipping on a cup of coffee. Sounds mundane, but since my surgery in 2015 my body just doesn't want anything to do with it. I have tried a couple times to revisit it, but no luck. I am trying again today, it actually sounded semi good. I have a quarter of a cup, we'll see if I make it though it! Ha. Little things.

Happy day one x 6 to all my lovely followers - I am learning I don't know many of you! So fascinating!

Live Updates From My full Day of Scans and Appointments

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.

Goodnight.

Scanxiety with a side of good news!

Today is a big day for a couple reasons. One it is February 24 (see previous post) and two I got my newest scan results and had a doctor visit. Leading up to this appointment I have felt very good and have been just waiting to see if side effects are going to hit me from these new meds (Zelboraf and Cotellic). It has been a waiting game for sure, but so far there hasn't really been anything worth noting.
I had an MRI and a CT scan yesterday, as you know they are not my favorite. I generally don't like them because they make me sick but now there is the scanxiety associated with scans and so they just aren't my favorite. I shouldn't have been as nervous for these scans since I can visually and physically see that the medicine is working wonders but that doesn't mean my mind doesn't wander. I still have the freshness of losing my dear friend to this same disease and it just makes me nervous. Also, they say that if one tumor has a BRaf mutation then all of them do (that's what the meds inhibit is the growth of this mutation) but what if a new one popped up and happened to not have the mutation, then what?! The what ifs tend to rule your mind before you know it. I was able to calm them to a degree, but the thoughts still lingered.
I got to my appointment and went to go get labs done. I am a terrible poke and today was no exception. After 4 failed pokes we finally got a vein to give us enough blood for 2 vials and I was on my way, just a bit bandaged and bruised. In the hallway I ran into my surgical oncologist (I am no longer seeing him since being off the trial and not having any surgery related things) and he gave me a giant hug and said how incredible my scans were. I hadn't gotten the official report at this time so I was so happy to hear and he just said they looked great.
Once my general oncologist came in he was beaming with content and said that my scans should go up in a hall of fame for "most improved" and a sort of show and tell. They pulled them up and it was pretty great to see. We did a side by side comparison of the scans from 12/22/15 and yesterdays 2/23/16 and it is really and truly amazing.

Left side of screen: 12/22/15
Right side of screen: 2/23/16
We are looking at the GIANT tumor (left pic neck) and then the small remnants that remain (right pic neck)

For once in the past year I was receiving good and improving results from my scans. There is no new disease and just remnants of tumor in comparison to the previous scans. Brain, lungs, all other organs clear. It was crazy to look at the size of the tumors in the scan and how large they truly got, and how small they are now in comparison. 

We (obviously) are staying on this course of treatment and will reevaluate in one month. There is still chance of adverse side effects as there is with all drugs, and for now we will just keep up with the tumor shrinking hopefully. I know this isn't an end game as far as treatment, but for now it is nice to have the positive scan results and head into the next month of this treatment. I don't have another doctor appointment for a month and I am feeling good and actually feel good enough to start making some plans for things in my life, something I haven't been able to readily do for literally over a year. One step at a time! 

Yay for a good scan day! 

Scans and Big Appointments

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.

The not so happy part of my friend’s wedding day…

As I was walking to the temple to join my friend on her wedding day I had this constant pain on my neck/chin and it just had gotten worse in the past few days. Thinking it was just my giant tumor pressing on nerves and whatnot, I put my fingers up to my jaw line to try and disperse the pain (for some reason I feel like touching the area of pain makes it better… it doesn’t lol) but as I did that I felt a lump. Yep. A new f’n tumor. I felt around a bit to make sure it definitely wasn’t the large tumor just spreading out, and it definitely was not. It is its own beast. I also felt a new one behind my ear as well later on that day. I called up to my doctors immediately and since my scans and appointments were less than a week away they just told me they will address it then.

My neck has been a pretty constant source of pain in the past 6 weeks. The past 3 have been increasingly bad. I have had to sleep in only one position and it definitely isn’t my favorite.. But I need sleep so I will do what my body will allow.

My appointments can’t come soon enough as I need to switch off this clinical trial and on to a different treatment – hopefully Keytruda. Keytruda just made national news as ridding President Jimmy Carter of all his tumors from Melanoma in a short 4 months. This is our next line of defense and I can’t wait to hopefully see the same results! I’ll see what the scans and doctors say on Tuesday!

Scan results, again.

I had another round of CT scans this last week because the study I am on needed them approximately 9 weeks after finishing the infusions of Ipilimumab. I am glad they did more scans because it gives us a better idea of where I stand now instead of waiting another 6+ weeks.
Before they told me the results I started looking into other treatments available for my stage. My cancer buddy Mandy was just recently pulled off of this study as it wasn't working for her and her cancer began to grow more than they felt comfortable with. She is now going to be starting with Keytruda - a PD1 inhibitor drug. So I started looking into it and it is definitely an option. My thoughts going into the appointment is that if things hadn't started to improve I would tell them to continue one or two more injections and then possibly switch to a PDI drug, like Keytruda.
My new scans showed that the tumors are all still growing, and there is a possible new tumor in my neck as well. It has not spread to any other area of my body, which is good. My lungs are the same as they were before, no change in either direction. My tumors, although bigger, looked more cystic (full of fluid not all tumor mass) as well as had more marbling of decrepit tissue or dying tissue. Both those things are a good sign.  All that said, my doctors have the same idea as I had going in. They would like to give the Ipilimumab another month or so to peak (peak efficiency is 4 months after infusion and I am only 9 weeks out from it) and then if at my next scans on 12/22/15 still show growth of the tumors then we will withdraw from the study and switch to a PD1 drug, most likely Keytruda. If the tumors are the same size then we will continue on the study, one treatment/injection at a time.
It is nice to be on the same page as my doctors and is also nice to have some good news mixed into things, just wish the tumors were shrinking.
I had the injection and it was a bit tender, but not bad. I had a pretty easy night with side effects, no fever or chills just a slight headache which is just fine with me. I'm pretty tired today, even after getting a good 11+ hours of sleep last night. Just means my body is fighting hard. I'm hoping this is the case going forward with injections, especially the next one since I booked a trip the next day to New York City. I had a flight credit I had to use by December 15, 2015 so I decided to go visit cousins and see the city all decked out for Christmas. It should be a great time! I really hope I feel good enough to do everything I want to for that trip. We shall see!

For now I am just going to keep on trucking along and enjoy as much of my life as I can while I am feeling as good as I am. This treatment will take me until at least the end of this year, so we will just see where it takes us!

Margins. Large one is 8cm

Spit and urine.. the usual

My hair is getting long.. and curly!

Scan Results

Yesterday was my long scan and appointment day.
I started the day at 7:30 getting labs and an IV placed and picking up my contrast for my CT scan. I sat at the U of U Hospital Starbucks with a friend drinking my contrast, which is the nastiest thing and makes me super sick. No fun. I then got my CT and headed up to Huntsman for the rest of my appointments.
My dad came with me this time to meet my doctors and experience what I have to do each time I am there. I could tell he was a bit anxious by the way he was acting - being goofy and all over the place. But then it was a lot of waiting so that fizzled out. I usually have to wait between and hour to two hours to be seen as they tend to run behind. Although this isn't great, I know that once they are in the room with me they will spend as much time as needed with me which is great. Regardless, it took extra long this time.
When they came in they told me the results from my scans. My tumor is not smaller, but it isn't bigger either. It is the same. There are also some small nodules in my lungs that they aren't sure exactly what they are. They could be cells reactive to the treatment as Ipi has a large impact on the lungs or if they are melanoma. There isn't a way to find out without a biopsy, and they aren't large enough to biopsy. The largest one is 2.5mm and they don't usually worry about things until they are 10mm/1cm. So they just pointed them out for us to keep an eye on (and to stress me out). They also noted that there was some discoloration/marbling inside the tumor which could indicate the tumor responding and that the discoloration could be deceased tissue. Again, no way to really know for sure as this is all still such a new treatment.
I then had to decide whether to stay on this same treatment or switch to a PDI treatment or a pill to counteract my BRAF gene mutation (I apparently have a gene mutation in the tumor?). I decided to stay on the injection trial and we will just continue to watch it all closely. The doctor said he would pull me off if it grows much more and we will switch treatments then. Hopefully I will get over this plateau and things will start progressing faster.
I then had to get a biopsy (to compare the tissue now to when we started) and then got an injection.
I have been having pretty intense headaches so they scheduled an MRI later in the day just to be sure. I got those results today and the brain is clear which is great.
My dad and I left around 1:30 to get lunch. I was glad he got to experience the day up there - even though I know it was overwhelming.
I returned at 4 for my MRI and finally was done with my day at 6. I was spent! I was excited to sleep in today.

Although it wasn't good news, it also wasn't bad news. Just ok news. It is frustrating but I have to remind myself that things could be so so much worse. I am still in this fight and happy to not be getting worse. This battle will be long, I just have to take it step by step, day by day.

Lots of bloodwork... 

The nastiest thing.. 

My dad being a dork and making them take his blood pressure... 

Tumor before injections 

Tumor outlines and the biopsy/injection marker 

After injections/biopsy... 

After...

Scanxiety

Tomorrow is my scan day. Tomorrow we will find out if the cancer has stayed localized or spread. We will also find out if the treatment is working well enough to continue or if we will be switching treatments. We will be doing a biopsy tomorrow as well - one of my least favorite things. If we continue on with this treatment we will start the additional injections tomorrow as well. If we switch then we will set up a schedule to start the new treatment, most likely PD1. I am hoping that it is working enough to continue on this treatment plan but I am nervous that it isn't working as well as needed as I still have two large tumors in my neck. They were shrinking in the beginning but I feel like they have plateaued and stopped shrinking. I guess we will wait and see. I used to never be nervous about scans until this year. Now it gives me major anxiety, or scanxiety as it is called in the cancer world. It will be a long day up at the hospital, yet again but I will be happy to have it over with. Here's hoping for some good news!