Still no decision

Here we are late Tuesday night and there still isn't an action plan in place for the next step in treatment. Can I say though that I have some amazing nurses? I emailed my PA and asked for her to call me and she did, from her vacation in California. I mean how considerate is that? We talked about what I was thinking of going forward, she talked a bit about their thoughts and then said that she would then talk to the doctor today and get back to me. No call today though, so I know I will hear from them tomorrow.
Here are my thoughts.
Just Radiation: Not a fan. If just radiation, then the dosing will be much larger as there is a larger tumor/cells to treat. It will be a re-do of the side effects I had before and I would anticipate severe burns, troubles in my eating/swallowing/mouth with a possibility of a feeding tube. The larger tumor is right about my thyroid so it would hit that hard. The smaller tumor is right on top of my larynx so my radiologist fears it will permanently affect my voice. I also worry that it isn't enough of an attack on the situation.
Surgery then Radiation: This is what I am leaning towards. I don't know the possible complications involved in doing the surgery on the front of my neck, so I don't have a good opinion on what would happen with surgery. As it looks right now it would be just removing these two tumors, which should be relatively noninvasive. Obviously there is possible nerve damage and scaring, but it should be minimal. If they have to do another lymph node dissection then that's a different story. I haven't heard of any additional disease in the right side of neck so I don't see the reason for removing lymph nodes at this time. Also can you go without that many lymph nodes in one main area? Seems a bit crazy to me. After surgery there would be radiation and I have almost all of the listed above concerns. Also to add to the radiation concerns is I would have to go off of my systematic treatment while doing radiation treatment so that is always nerve wracking.
Injectable Treatments: Not on board. An injectable treatment is where they trigger treatment by injecting into the tumor directly, usually using a virus of some sort. It then trains your body to kill those type of cancer cells and begins acting like a vaccine for the rest of the body/tumors/cells. While this sounds good, it actually is poorly timed for my situation. These two tumors have shown they are molecularly different than my other tumors and they are growing while all the others are shrinking in response to my BRaf inhibitor treatment. So with that, the injectable would only treat this exact type of tumor instead of all of them. That is too risky to let them run wild while only focusing on two tumors.

Can only see one tumor here... but you can see just how odd my neck shape is after all the surgeries and treatments. Plus the radiation marker tattoo that looks like a black mole. Also note my dimple chin, beauty mark and "A" necklace that I've worn for 13+ years. 

I am eager to hear what my team suggests. But until then, and until I start whatever is next, I am feeling pretty good. This sinus infection is still lingering but isn't holding me back thankfully. I am trying to cram in as much as I can now since I am pretty sure I will be knocked down in the coming weeks. My trip to San Diego this weekend couldn't have been better timed and I am excited to just go and have a fun time. I am hoping that they clear me to have some cocktails... champagne brunch anyone?! My mind has been running wild lately (for many different reasons, not really on cancer bs) so I need to reset (again). The day before I go I am actually going to see a medium/spiritual counselor. Mediums, if you aren't familiar with them, speak to those who have passed on. I have been before but I had never had anyone close to me who had passed at that time. Now I have several so it should be interesting. I don't have any unanswered questions or messages for those people who have passed, but I just want to see if they come through. Maybe they have some insight. Maybe its all insane? I look at it as entertainment at the least, and take it all with a grain of salt so we shall see how it goes. I will definitely write about it though.

Also I know I have some new followers on here - so hello and thanks for following my journey through this madness! Hope my long-winded-ness doesn't bore you!

Hopefully I will be writing next about the decision on the next treatment (you know, treatment change #14, or is it #15. Lost count...)

Onward, one day at a time.

Good Ol' Snapchat Filters; guessing this is a baby bear? 

Hung my bird feeders this weekend! Hopefully I get lots and lots of hummingbirds!

No Decision, yet

One thing, among many, that I have learned from this whole cancer stuff is that nothing is certain or set in stone. In this case it's getting my mind set on what is next. I had been told they were thinking radiation as the next step. As I have stated many times, I despise radiation and really struggled with it so it took me a bit to get my mind on board that I would be facing that again. I went to my radiation consult and my doctor was not convinced it was the best option. She suggested surgery first and then radiation as it would spare the other things around the tumors and be less invasive. She wanted to present my case at tumor board again and see what the surgeons and general oncologist had to say about it all. I had my radiation simulation scheduled for later that day but was told that it was cancelled as they think I will be doing surgery or an injectable treatment. I also had a CT of my neck so that it was up to date as possible.

Tumor board was on Thursday (yesterday) when I was presented, And nothing was decided. All I know right now is that they are still deciding on what route I should go. For now it seems that radiation is on hold. When talking with my nurses it seems as though they do not feel like an injectable is a great route to go and would rather go with surgery/radiation or just radiation. For now I will stay on the treatment I am on (BRaf inhibitors) until they tell me otherwise. I know that my radiation oncologist is out of the country for 2 weeks so the attending is who I would be dealing with before she gets back. If I am just doing radiation then I will most likely not start until 3 weeks from now. Surgery wouldn't be until then either. My tumors on the front of my neck are still growing; no pain though.

I also have been off of the pain patch for almost 2 weeks now. I have had mild withdraw symptoms since taking it off, but no pain. This is a good sign that the treatment is working and that the bone mets are not increasing. I do get pains in my neck, mostly I'm sure from it overcompensating for the side that doesn't have the muscles to hold up my head. It also doesn't help that I have had a cold/sinus infection for the last week. Hoping to feel better soon.

In October I had to cancel a trip to San Diego, California because of my surgery and treatment. My friends have rebooked the trip and we are going in one week! I will not let anything cancel this trip, that is for sure. I am excited to just get away again. It is with a friend I have known since I was 5 years old. Him and his wife are so generous and are flying me out as well as doing hotel and air. I can't wait!

Today my mom came and planted all of my new vegetables (tomatoes, peppers, beets, carrots, squash, cantelope and a pumpkin) as well as a bunch of dahlias (my favorite flowers). I am hoping that it is a successful garden. I am gonna have to be diligent on the watering!

We will have to see what the doctors think up, until then I am laying low and trying to beat this cold. Early bed time for me.

Little shits

I'm talking about my two new tumors on the front of my neck. Yep, two. They are small (one you can't even see but I can feel it) and they aren't growing fast. But they are growing. This means they aren't responding to the systemic treatment (BRaf Inhibitors) so we need to attack them in a different way. Sadly, that other way is radiation. I was told this was the next option over a week ago and it took me a bit to be alright with it and tell people. Tuesday is when we confirmed that that is the best option going forward. They did ask me what I thought (which they do with all treatments since I control the situation for the most part) and I said "you will never hear the words 'I want radiation' come out of my mouth, so this decision is on you to tell me I am doing it." My doctor said it was a no brainer decision from him as radiation worked on the other park of my neck (for the most part since only one small tumor remains) and having a break in the BRaf pills has actually proved to be more effective in the long term. In order to do radiation I need to be off of the BRaf and do what is called a "washout" which basically means time for it to leave my system, for me that is 7 days before and after radiation. I will find out Monday the plan for when to start radiation and stop the BRaf as well as how many treatments I will be getting. I also will be getting a new mask made and possibly more tattoo markers. They feel that I most likely will not get as many treatments as I did last time (20) and will probably get 5-10. If this is so, then my side effects should be much more mild in comparison. Doesn't hurt that I wont be doing chemo at the same time, like last time. My body will be able to stay stronger through this than it did before, or so I truly am hoping. Good hell I hate radiation though...

Pointing to the second tumor. The bump that looks like an Adams apple is a tumor as well

That said, I may be speaking to 7th and 8th graders about my radiation experiences in the coming weeks.  I have wanted to speak to younger kids about my melanoma in general but man it is a lot to tell! My friend is a science teacher and he suggested to narrow it down (and try and connect it to science) and so I figured radiation would be best and it has the most show and tell props (mask, burn pictures, tattoos, bald spots... you know the works!) I hope to do this in the next few weeks before school is out for the year. Better get my butt in gear!

My hair is growing super fast which is great. As of April 1st I decided to not wear a beanie/hat at all times and that seems like ages ago. I got some steps shaved in and those are pretty much out grown. I have taken a picture each Sunday since the new little hairs started to come in and now have 3 months worth of pictures and it is pretty amazing to see the change. Still holding out for curls though!

Life has gotten a bit more regular. I have had a good amount of daily energy where I don't require a nap each day. I also have had my appetite back and actually am tasting things again. It has been nice to have food that actually tastes how I think it should. It's been a long time coming for sure

I have been getting some things ready to plant in my yard and am excited to watch it all grow, going to plant them this week sometime now that the weather is warmer. I have been seeing a good amount of friends and enjoying feeling good again!

Me and tiny PipSqueek the baby goat

"So, what's next for you?"

I have gotten that questions about 5 times in the last day so I guess I need to clarify what exactly is next for me. 

In my last post I talked about scan results and the new tumor in my neck. Although this is new information it didn't change my treatment plan for now. I am still on the at home chemo which is the BRaf inhibitors. I take meds twice a day at home and don't go up to the hospital for treatment for now. We do monitor my blood work closely though - make sure my liver is behaving, my white count (nuetropenia levels) and my cancer growing marker (which is coming down thankfully.)

As of right now I have blood work this week and they will be discussing me at tumor board again this week. After that I have a follow-up/more blood work on May 2nd. 

I am still on the pain patch, though we are working on lowering the dose and moving to just breakthrough meds. My pain is very minimal now which has been nice. My fatigue has improved and I can make it through the day without a nap most days (though there is a lot of being lazy.) Eating has improved drastically over the last week so I hope to stabilize my weight and hopefully stop losing more weight. Never thought I would be wishing to stop losing weight... Cancer does strange things to you. 

Yesterday was Easter and I enjoyed a brunch with some friends and then a good family dinner. 

Cousins
*you can see my new tumor poking out, basically looks like a small Adams apple

This is a picture of one of my favorite kids (well he is 18 now...) and on his lacrosse helmet he wore my initials. Pretty amazing guy. 

Tony Boutwell

New Tumor. California. Mixed Scan Results.

The last two weeks have been a roller coaster that is for sure. I finally got out of my fever/sleeping/aching and have been able to function semi-normal. Each day has gotten a bit better.

I decided to head to Park City with some girlfriends overnight and I had a great time until mid dinner when my stomach decided it was done. Luckily my friends are great and we just all went back to the condo and hung out and chatted. The day and night were fun and I got some great sunglasses, too.  

I had my appointment on the 5th and the night before I just happened to put my hand on the front of my neck and felt a lump. About the size of a blueberry, but definitely there. These are the moments in this craziness that I just crumble and my mind races and runs. At the appointment we biopsied it and decided to move my scans up to the next day. We decreased my pain patch dose as that may have been contributing heavily to my extreme fatigue.  I also had a followup with my neck surgeon and he officially "released" me from his services. Basically means I don't have to go back unless more surgery is needed/requested.

New tumor is in the middle/front of my neck (where the dots are)

That night I went home and bought a ticket to California to see my best friend. I needed to run away and just take a break from being the cancer patient. I knew that I could go down there and sit on her couch if needed and it would be good and make me happy. If I felt good then it was a bonus! So I decided to keep it a secret from her and surprise her when I got there. It was great to see her face and surprise! We had a great time and I felt really good the whole time. We ate a lot - even me! Went whale/dolphin watching on a fun small boat - didn't see any whales but a good amount of dolphins and it was a great time regardless. That night we met up with a friend we both hadn't seen since 10th grade! It was so much fun to get together and remenise about the crazy times we have had and catch up. The next day I was on my own while everyone was at work and I slept in and then went to the beach and around town. Although I was beyond tired each night I was beyond happy and it is all worth it. Also, they have a new pet pig that was a lot of fun to get to know and snuggle.

 

 
                          

I had to fly back in time for my appointment today to go over scans. Talk about a downer to return for! The results are mixed as yes, the new lump in my neck is cancer but it has a different chemistry than the other tumors. This can mean that the cells are forming differently because of the treatments I've been doing (still am not clear if that is good or bad?) The tumors in my liver are larger BUT all the other spots in my body are smaller. So my brain, lungs, spleen and bones are all shrinking and responding to treatment. We decided to still "ride the wave" as my doctor calls it and stay on the same treatment (BRaf Inhibitors Mekinist and Zelboraf). My white count is low though and so I am nuetropenic so we did a dose reduction for that since we don't want to end up with a hospital visit for it. Overall it was a positive appointment and I am feeling good so I hope to continue on this upswing. I am liking feeling semi-normal again and having energy and an appetite. Also my hair is growing lots!

One sad thing is a blogger I follow (and 20k+ others) Dear Melanoma/Emma Betts, sadly passed away this week. She was 25 and fought stage IV melanoma for over 3 years. Many people tell me to not follow these people as it is just too sad. For me it helps me feel connected to people who are going through the same thing and bring in some reality of things. I may know too much about how the end days of this disease look like, but it doesn't scare me. I guess it just makes me more informed overall.

No big plans coming up. Trying to make it to Moab for a wedding at the beginning of the month. Going to try and work a bit. Do my taxes. Finish some things around the house. Garden/plant some things. All the random things.

Ups, downs and meltdown

Sometimes I have to just stop and breath. That is what right this moment is. It's crazy how one day can hold so many emotions. Here's my day. . .
I am staying up at Snowbird, a local ski resort that is open for summer and my best friends have a week timeshare. It is a staycation about 25 minutes away and seems like a whole different world. You escape the heat of the valley into mountains and beauty. I am lucky enough they let me come stay the whole week, I'm sure there are days they want it to themselves though. Regardless it's the 4th year I've joined them and I look forward to it each year. Today I planned on heading to the valley to meet some friends from out of town and then I got a call to look at an apartment. As I got ready I could feel that things would go one of two ways... Good day or a steroid rage day. Definitely was heading for the latter.. I drove down the canyon and had to check myself because I was starting to just get annoyed at the drivers for no reason really. Then the apartment was pretty awful. Then just didn't feel great and had to fill time until meeting friends. By the time I met the friends I was drained. Luckily once they got there I got a second wind (the sugar high didn't hurt either) and was able to really enjoy seeing them.
After that I drove back up the canyon and just was overwhelmed. So many thoughts and things were just racing through my mind, I couldn't shut my brain off. Once I got back to Snowbird I needed to just stare into nothing, not talk to anyone. Luckily they have a solarium/quiet space I could take advantage of and I sat up there for an hour. It helped calm me down a bit but the thoughts still just came rushing in. Headed back to the room and my friend could see through the fake smile and I just lost it. Today I was just done once it is all said and done. I had my cry and then took a nice shower. Thoughts slowed down and I was able to relax on the couch.
I then turned the channel and there was the Craig Sager speech (next post) definitely not what I wanted to hear at the moment but definitely what I needed to hear.
Now to bed. Today is done. Tomorrow I can start fresh. Sometimes one day at a time is a giant feat. As in today. And sometimes you just need to actually let people see you in the breakdown. Be human. On to tomorrow.

Shrink Fest

We are now 6 days into my new/old treatment of the BRaf Inhibitors (Zelboraf and Cotellic) and I am happy to say that they are shrinking the tumors as fast or faster than last time. I know my tumor was obviously much larger the last time I was on these but it is pretty amazing to see it work right before your eyes.

Here is a timeline of pictures to just show you how fast they work. 

7/7/16 Day one (took the first pills that night)

7/8/16

7/9/16 AM 

  7/9/16 PM (13 hour difference from the left)

7/11/16

So here are the pros and cons ...

PROS:

These drugs are truly incredible if you think about it. They attack the tumors literally instantly and you can see them disappearing before your eyes. They have minimal side effects and make me feel like a normal human without a constant reminder that I'm sick. The pain relief has been so great too. I haven't had to take a pain pill since Thursday 7/7 during the day which is great (minus scans cause I had to lay flat...) and then I have started to reduce my nerve meds as well. 

CONS:

These drugs are false hope. They are a temporary, bridge treatment until they stop working. Nearly every person on them will hit a plateau by month 9 and then growth will reoccur. 

I wish with all my being that these were permanent and that this excitement of them disappearing before my eyes was a permanent result and life can begin to head towards "normal." It is hard to tell people that yes this is incredible and looks like I am doing amazing but don't get your hopes up too high because we are on the roller coaster right now, highs and lows. For now I am enjoying the highs of it, and the lower pain. It is a day to day ride and for now I will be grateful for the progress I have in this moment. My neck is going to be back to "normal" in days which will be great - no visible tumors in a week I would say. We shall see! 

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

MEDS

So I have been asked how many meds I take a day... Well with the new meds it is a lot as it adds 9 pills a day. I decided to show you exactly what I take.

Here are my AM meds.

They are as follows: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Ibuprofen 800mg - Pain

Gabbapentin (2, 600mg) - Never Pain

Personal Pill

Allergy Pill

Thyroid Pill - Caused from the immunotherapy

Prednisone (4) - Currently on 80mg down from 120mg

Stomach Coat Pill - Due to the Prednisone dose, to protect my stomach

Pain Pills (1 1/2) - These vary per day, and multiple times a day

NOT PICTURED: Mid day meds: Gabbapentin (2, 600mg) and another Ibuprofen 800mg. If pain is climbing I will take additional pain meds too although I try not to

PM Meds: 

Zelboraf (3) - BRaf Inhibitor/Chemo Drug

Gabbapentin (2, 600mg) - Nerve Pain

Pain Pill (1 1/2)

Cottellic (3) - BRaf Inhibitor/Chemo Drug

Personal Pill

Sleeping Pill

Probiotic

So, lots of pills. Since my liver situation is still so high, all but my nerve meds all process through my kidneys. For now I can't take anything else that will process through my liver such as Tylenol so I have to be careful. Before the liver situation I had two additional meds I took as well... so many meds! The life of a cancer patient is what I say. As the pain decreases with the BRaf inhibitors I will be able to reduce the pain pills, ibuprofen and nerve meds. I'd like to get down to as little amount of prescriptions as possible but that will take some time, but that is always the goal. Lets just say they know me at the pharmacy. 

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!

New Plan... For the 6th time

Today was the day to decide what we are doing next. It was my appointment with my general oncologist. Since I hit toxicity and formed auto-immune hepatitis from the Nivolumab/Ipilimumab combo I am not allowed to proceed because the risk of liver failure is basically 100%. And if that happens then I am not a candidate for a transplant because of having cancer. Obviously this is worst case scenario but we aren't going to risk anything.

There is a couple options available still, one being a new clinical trial. It combines an injection into the lesions/tumors and also has infusions of Keytruda. I do not remember the official name of the injection but it is IL12, and very potent and it sounds crazy. The injections are supposed to be extremely painful and invasive. The tumors would double or triple in size before going down. With all that said it is showing to be very promising in the long run, but things would get worse before they got better.

My doctor basically said he has put me through the 2 hardest treatments and this would be number 3.
I was gearing myself up to sign on to this intense and invasive treatment and then we realized I am not eligible due to my high steroid regimen I'm on. I would have to be off of it completely before starting and that wont be for at least 6 weeks. And at that point we will look at it all again.

That brought us to figure out what we can do. Basically we need to get a handle on the tumors and get the pain down. This can be done through radiation or going back on the BRaf inhibitors. Because of my steroid regimen I am not eligible for any new treatment but can revisit old ones. We decided against radiation (thankfully!!) Because it has the potential to take options off the table later down the road. That left us with the BRaf inhibitors. We know I respond quickly to these and hopefully it will shrink the tumors so I can have some pain relief. We will stay on these until I hit the plateau again (it is inevitable that I will, almost all patients on this hit a plateau within a year). Although I don't like to see my options shrink, I am ok with this plan. I know that I tolerate the inhibitors well and feel pretty normal on them so that makes me happy to know that I can enjoy summer and won't be too sick. My Sun sensitivity will increase again but I have hats and all the sunscreen anyone could need!

So new treatment plan but not new treatment... Treatment 5 part 2?

I should be able to start the meds the beginning of next week. I will also have new scans to restage me and make sure we are still just dealing with tumors in my neck. Let's hope they have still stayed localized.

I'm excited for the holiday weekend and fireworks and hot dogs and friends. Now if I could have an adult beverage that would be even better... Damn liver!

Hotel Huntsman, 2 night stay

Wednesday, I went in for my scheduled treatment and went in to get all my labs done before they give you the go ahead to head to infusion. I felt great heading in, just intense nerve pain in my neck. Otherwise just a bit tired. For some reason my port wouldn't give us blood but would flush. I guess this just means the fibers built up like a clot but only blocked one way. This made it so my numbers weren't ready once my doctors appointment started. We talked about things and how the past 3 weeks have been and going forward and then the numbers finally came out. Once they checked my numbers it was obvious something wasn't right and it definitely wasn't right. Turns out my liver was in toxicity. The high/normal that the liver enzymes should be is 40 and 60, mine were 1206 and 1214 (respectively) so I got to be admitted to hotel Huntsman for observation and to get an intense steroid regimen in place and started. They also discontinued all of the meds that had the potential for raising the liver enzymes and one of those is my nerve pain meds. Lets just say I was not happy and the pain started to rise instantly. They did their best to control it but it was finally decided (with a lot of input from me and a doctor friend) that I could have it back. Just missing a day and a half of it really put me behind and I am still catching up. After the first night my numbers began to trend in the right direction, ~700 and ~1100. They needed to keep me to make sure they were continuing to trend down - Which they did and I was home Friday afternoon. Like I said I didn't have any real symptoms or pain from my liver, just from my neck. 

Because I reached toxicity (considered auto-immune hepatitis) I am no longer allowed to continue on this treatment. I said a bad word and my doctor said to not get upset just yet. His explanation was that he just returned from a major oncology conference where the 5 year data points have been released for this treatment. Following people who dropped out for toxicity, etc vs. people who completed the full treatment regimen, it showed the people who reached toxicity lived an extra 10%. Also we are most likely adding radiation to the mix which will accelerate the response in my neck while the drugs are still in my system. There are still options, we will just have to figure out the best one and where to go from here. Not the end of the line. 

I have appointments this week to go over all the next steps and I'll keep you posted on those. For now I am just getting the nerves to calm the crap down and getting used to a very high dose of steroids - hopefully not for long!

Day one - not how I wanted to spend my days!

I was able to leave my room a lot and actually enjoy the view from the floor

New lucky charm

Home was a good goal for the stay!

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.

Still Swollen

Today makes 5 days of waking up very swollen in my face, along with not feeling very good in general. I look like I gained an additional 50lbs but just in my face! It is very painful too so that isn't very fun.
On Thursday I went to the Acute Care Clinic at Huntsman just to make sure things were ok and for them to see it all in person. There are a few things it could be but there isn't a clear answer as to what is really happening.
First: Lymph-edema, a back up of lymphatic fluid caused by damaged lymph nodes or lack of lymph nodes to flush out the fluid. While this is the most likely of the options, it doesn't explain why it would be happening on both sides of my face. It is definitely more prominent on the scar/surgery side but there is still swelling present on the other side.
Second: Cushings Syndrome ie: Steroid Face/Moonface. This is when your body retains water in the face, neck and stomach due to steroid use. Since I have been on prednisone (steroid) for over 2 months this is definitely an option. While annoying, there isn't much you can do about it. I don't doubt that I started to retain some water in my face over the last two months, I don't feel this is what is going on. Some of the reasons are that cushings syndrome isn't painful and is symmetrical usually. Mine is very tender and sensitive and definitely not symmetrical.
Third: TMJ- jaw joint issues. While I highly doubt this is the case, the doctor still made sure to check it all out.
Fourth and finally: Overactive Glands/Lymph nodes from being sick earlier in the week. I came down with a cold on Sunday evening and Monday that was not very fun. Tuesday is when the swelling began and has just stayed persistent since. It is very likely that my glands are just over producing and reacting to the sickness and there isn't anywhere for the fluid to go. This is what I feel is going on, and that my immune system has just decided to freak out and overreact in the face of the cold. This would explain both sides swelling, as well as the tenderness. There are some very deep lymph nodes left on my left side that could easily be trying their hardest to help but in turn making things worse.
There isn't really any way to know exactly what is going on but I have scans on Wednesday which will help us get a better understanding of what is happening below the surface. For now I have to just live with the swelling and tenderness and hope that it begins to go down. It is just cancer letting me know it is still around, in case I forgot. Ha, nope!

I'll let you all know what happens in the next few days, hopefully that my face isn't swollen anymore!

I woke up like this...

And sadly it isn't pretty...
Yesterday I woke up and felt like I was a bit swollen in my face. I attributed it to a very common side effect of prednisone called "moonface" where the water retention is focused in your face. I have had a pretty crazy cold the last two days and just felt that maybe my immune system just didn't have the defenses to hold back side effects anymore. I felt a bit better throughout the day yesterday and went to bed not thinking much of things.
I woke up today extremely swollen in my face, particularly on my jaw and jaw joints. It was extra painful and tender and my side with the scar, cancer alley as I'm now calling it, had some additional swelling. I also had a crazy headache that just barely has subsided. I had a slight fever, 99.1 but that comes and goes. A bit of body and joint aches and some rash spots are forming. Ahh the joys of side effects and cancer.
I called my nurses and they want me to hold my meds until these things resolve. I don't feel that is the best answer, but I will do what they say. I have a feeling it may be lymphadema, or a build up of the lymphatic fluid, and since I don't have proper flow due to removing the lymph nodes on that side it would make sense that it would build up. And me being sick makes your lymphatic system work and produce more than normal. Regardless, I feel pretty crappy. I have hunkered down the last few days and today is no exception. I am planning on sleeping with my head elevated to see if that will help take the swelling down. Guess we will have to see.

Here's hoping tomorrow is a better day! 

Not the prettiest pictures... but we can't win them all. And I had just woke up. 

Good days after good days

This past month I have felt really good. I haven't really had any bad days that I can really report - just an occasional random side effect showing its head for a minute and then gone for the most part. It makes me almost forget I am sick. I think being on the steroids (prednisone) has really helped as far as side effects go, but then there are the side effects from that med which I'm really not a fan of. Now that I have been on it for almost two months the water weight gain ie: moonface is definitely a reality as well as some retention in the stomach area. I am really hoping that once I am off of the prednisone the weight will drop and be back to normal. But I can't deny that the drug is helping me live a full life while also treating my cancer. It also gives me random energy that I definitely didn't have a couple months ago. I am trying my best to utilize it and not just waste it. I have started to work a bit more, helping out at Market Street Grill corporate offices as well as helping at the Farmers Markets yesterday. It isn't much but it is definitely something and is keeping me busy.

It is hard to plan out the next few months though, not really knowing what the treatment road is. I have an idea but that can change once I have my scans in 10 days. Going into them I don't have too much confidence but am really trying to not focus on it. I can still feel the small tumors in my neck and think I've hit a plateau with the meds and their effectiveness. I have also had some weird pains/sensations in my scalp that I can't really describe and then there is the slight rash that just is barely there - but just enough to notice. 

I have been super active this past week - even exercising which is a new thing for me. I went on a 3.2 mile walk yesterday and was definitely tired, but not too bad. I also had a lot of social stuff this week and was able to enjoy it all without having to bow out early cause of being tired or whatnot. That is definitely a nice change. 

I woke up today with a cold and side effects so I am laying low and giving my body a rest and hopefully tomorrow I will be feeling better. I probably over did things a bit this weekend, but it was worth it. I am trying to embrace these days that I am feeling good so that if that changes I don't feel like I wasted any of it. If that makes sense.. 

Scans are on the 27th so we will see what the next month holds. For now we are just sticking with what is happening now - just lots of at home meds and such. 

Onward ho!

Timeline sinking in

Today I had my normal monthly appointment to go over how treatment is going and we map out the next months plan, talk about side effects etc. No scans this month, they are in 4 weeks.

Ever since we decided that I would do this treatment, my third choice if you remember, I knew that this isn't the last treatment I would be doing as it isn't a permanent/end game treatment. It is more of stepping stone to get to the next treatments and also a requirement from the insurance companies to do (don't you just love that?) Most patients stop responding to the treatment 6-9months in and again almost all have re-occurrence of cancer growth within two years of finishing the treatment.
I am entering into my 4th month on this type of treatment. I asked today how long I could stay on it and I was surprised when they said that I could technically be on it indefinitely, but again most people see little response rate between months 6-9 and then move on to the next treatment. He then laid out the next steps they are thinking for me and that would be to stay on this until August (7 months in), unless my body decides to not tolerate it sooner, and then switch to the hard hitting Nivolomab/Ipilumimab combo. This combo is not covered by my insurance as of now so I would have to get a grant from the drug companies approved. The petition is already in, but is on hold until we get to that point in treatment (the company requires you to start the drug within a week of granting you drug, so we can't do it until we are ready.)

For some reason, even though I knew this all along, it hit me hard today that I will be in treatment for at least 7 months, but looking more like a year plus. Just thinking of being here again next year and still on treatment is a bit overwhelming to me. Is it because I am not sure if I can make plans for that whole time? That life can't move forward while still on this path? That cancer does have a reign on me, more than I am allow myself to understand? I am not sure. But today just kinda was a blah day when I really wrapped my head around what my life will look like for the next year+.

My plan, and I will have to actively work on thinking and acting in this way, is to have cancer be the best thing that happened to me. Happened, in the past tense because I want to believe that I can truly beat it for good. I hope to actually start working while I feel good, taking it week by week as possible. I want to give myself permission to live as though I am not fighting cancer. Not let it reign me and all that I do. I want cancer to have given me a different look on life and not take things for granted, live in the moment. Not think and worry about what everyone is thinking and judging me on. We'll see how this all goes. Trying to not get too far into my thoughts of the coming year. Thinking in the now, not the months down the road.

Silly life, you sure know how to be complicated at times!

And we're back on track

On Monday my doctors decided to pause my meds and start me on a low dose of prednisone (steroid). This is because I was having multiple side effects creep in as well as the skin issues (that's the main reason for the prednisone, as well as the joint pain/issues) After just one dose of the steroid my symptoms started to reside and I began feeling better. By the time of my appointment yesterday, Wednesday, most of my skin issues had subsided and I wasn't having any other real side effect issues. At the appointment we talked about our plan. I was really hoping they wouldn't take this option away as I am not ready to be down one more option. My opinion in the matter is that I am fighting cancer and taking drugs made to kill and take down cancer - I don't expect to feel well. I expect to have side effects and know I will have to manage them and work through them until we don't have to anymore. I can handle some side effects. Although I felt crappy, I have felt more crappy in this battle, I can handle it.
So with all that said, we decided to restart the meds just at a slightly lower dose. Instead of taking 4 pills AM/PM of the Zelboraf I will now take 3 AM/PM and then then 2 pills instead of 3 pills of the Cotellic. I will also stay on prednisone (20mg) once a day for at least a week and then begin to taper and hopefully we can stay at a low low dose of that to control the skin and joint issues. I am not a big fan of prednisone as it makes me a bit wired, irritable and the worst of them all is makes me a ravenous eater. ie: a fat kid in a bakery. BUT if taking it means I can continue on the cancer fighting meds it is worth attempting to be a bit regulated as far as my diet and just go from there.  We are going to see how I handle this new dosing and unless something comes up I wont see the doctor for another 2 weeks. Ideally we will stay on this regimen for at least another month and a half until my next scans in April and then reevaluate as per usual.
Since I have felt better I have worked a couple days this week at my job at Market Street/GINC. Ironically today (3/10) is my original hire date in 2006. It is funny that I took on a new responsibility today, 10 years later. I had a 3 year hiatus so I only have really physically worked for the company for 7 years. Still, you know how I am a sucker for anniversaries! They have been great working with me and my "situation" and have been very flexible with me. I am able to work when I feel well, and able to take a day or so if I don't feel good. It is nice to know I have a say in when I am working.

Prednisone also makes me a bit scatter brained and spastic, if you can't tell from this post jumping all over. I'll have to fine tune that and work off that energy for now!

As for now I'll keep busy and hopefully keep away from too many side effects.  One day at a time my friends!

Creepers...

Side effects... They are creepers. You're going a long just fine and then boom, there's a side effect and then BANG another! And another! Welcome to my life this last week.
On Thursday I started getting a few of the hive/welts sneaking in. On Friday there were a few more as well as a rash on my back that was starting and joint pain. Then Saturday came the nausea and chills, low low fever (99). Sunday was all of the above plus extreme fatigue and I spent the entire day in bed or in my chair relaxing. Not the most fun of a weekend but you never know what your days will bring when you are actively fighting cancer (one of my biggest struggles with this battle, to say the least).
Called the doctors on Monday morning and tried to downplay the side effects - hoping they would just try some more prednisone for the rash/hive situation and I would just truck through the other issues but they could see right through it all and decided to pause the meds for now and have me come in tomorrow (Wednesday) to go over the plan of action.
Not going to lie, not too happy about this all. On the first round of these meds this year (Mekinist and Tafinlar) I made it 21 days until we stopped the meds. On the new ones (Zelboraf and Cotellic) I made it through an entire month cycle plus 6 days. Which is pretty good in my mind. I'm hoping the doctors just give my body a brief recoup and we restart on the meds and finish at least another month on them. Why you ask? Because once this option is off the table that means there is only 2 more approved treatments available or it is clinical trials. My options become more and more slim. Just doesn't leave a very comforting feeling in me.
As far as the drug that we have been waiting to see if it is cleared through the drug company - that is still in the process. Once we knew we would be trying these drugs we put a hold on the request. It is still an option if we need it to be. The other drug that the insurance denied last will now be approved because I tried the drugs I am currently on - just something that had to be checked off the list before they would approve it. You have to try drug A and drug B in order to receive the awesome drug C. Gotta love insurance companies! But really I don't know what I would do without insurance... such a crazy cycle.

Not sure what tomorrows appointment will bring but I guess we will just have to wait and see. As for today I feel much better than yesterday. I have had actual food and snoozed/relaxed most of the day and planning on going to IHOP later for International Pancake Day to support my sisters company Children's Miracle Network - gotta get out of the house at least once in a day! Even if it is to play with the dog outside.

I'll keep you posted!
One moment at a time...

Snacks and a show... 

Sunday... 

February 27

If you haven't noticed the theme of this week.. it is anniversaries. This week, February 24-March 4, is what I refer to as my "hell week." I know I shouldn't put energy into it all but this week is a bad week for me historically. It all started in 2005 (dog died, car accident and dog attack. Started to sound like a country song) and seems to continue to this day. Regardless, I try to lay low this week just in case.
February 27 is my original "cancer free" birthday, it is the date of my last surgery for my first round of cancer diagnosis. I almost made it to my 6th birthday, but then that changed last year obviously. It was sad to have the day come and go and no longer hold such importance. I don't have a new cancer free date just yet as I am still actively fighting this f'r.
I will be happy to be done with this week soon and hopefully not have any more major things to add to the plate. I want to break the cycle!

It has been interesting these past few weeks. Since I am obviously responding well to the treatments, people are asking the question of "so are you cured?" "can it go away?!" So no I am not cured - I am definitely better than I have been but there is still cancer and tumors in my body that we are watching closely. And yes it can go away or have no evidence of disease (NED) but I will always still have had stage 3c cancer. My stage doesn't go away, it just gets re-staged after you have NED and it recurs. They don't use the words "cured", they say in remission or NED or clear; all words I hope to hear soon.

I have been asked a lot lately how I am feeling as well. I am still doing well - no real side effects to report. I have now been on this new med cycle for 29 days and still doing well. I have some minor skin irritations and exhaustion but that is all. Since I have been doing so well I am starting to consider going back to work - wherever that may be - to help pass some time and get back on my feet. We shall see!