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!

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. 

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!

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! 

First Outdoor Market Day

Yesterday was farmers market day. For those of you who don't know my full past, my last job was doing vendor management for one of the local farmers markets in town. I would make sure vendors did what they were supposed to and collect payments and just basically make the event/day run smoothly. I have worked a bit here and there since my cancer returned, but I always try and go to the market if I can. I also have FOMO (fear of missing out) if I don't go.. so there is that. Regardless, yesterday was the market and I went to go support my work buddies and enjoy the day. Since the weather has been kind of nice, they decided to have it outside. Knowing this, I put sunscreen on as well as I had a long sleeve cardigan/sweater on. I have been on the BRaf inhibitors since January 1st, technically, and one of the side effects is sensitivity to the sun so I was prepared. Or so I thought. It was overcast for most of the time I was there and then the sun came out towards the end. I could feel that I was getting some sun so I would duck into the booths and shade every chance I got. By the end I felt my face and top of my head burning - like a chemical peel almost. I began covering my head and face with my cardigan like I was hiding from paparazzi or something. It was pretty crazy. By the time I left I knew I was burned, just didn't realize just how bad it was. My lips felt like I was scalding them when I put on some vaseline and the top of my head (where a bald spot would be) was stinging and itching. By the end of the night my chest and neck were becoming more and more red and began itching and burning, almost feeling raw. I took some benadryl to sleep and when I woke up the true extent of the burn was there. I got it good! My chest is soo red and one side of my neck as well. My nose and some of my cheeks are rosey and my lips have already peeled once. To really make it crazy, my hands are burned. My hands!! Just crazy. I knew that it made you more sensitive, but my hell! It is like I have brand new baby skin!! I really thought I was prepared, but obviously not. I will say I did not put sunscreen on my chest, so that is my fault. Now I will be extra prepared and have put my sunscreen in my bag so I am ready. I am hoping this pain and stinging subsides soon, but I am almost positive I will peel. Nothing like a skin cancer patient getting severely burned .. the irony. For now it is ibuprofen and aloe gel as well as extra sunscreen.

Beginning of the day

You can barely see my nose and neck in this.. as well as my hands

Who burns their hands? 

Mid day.. heat is radiating off of this!

Random Update

I thought I would just update on my life in general as I haven't really done much on my health as it has been pretty stable, with not much to report - which is a good thing.
As you know I started my new meds on February 1st. I have now been on them for 18 days and things are going good. I was off meds for 10 days before these and in those 10 days my tumors all began to creep back. I was happy to see that after 3 days back on the meds they began to shrink once again. As of right now they are practically gone, it is pretty incredible.
For side effects I got a rash that started on the same day as on the last cycle, day 10. I started to take prednisone immediately and it seems to have stopped the rash in its tracks. I have still been fighting the stomach bug that started on Jan. 30, which it is basically gone but is still lingering a bit. I think my body just isn't as equipt to fight as hard so things linger. Luckily I am not as sick as I was that first week. My bad side effects started on day 20/21 with the last meds so I am just kind of waiting to see if these will be the same or if I will continue on without any more issues. We shall see!
As for the rest of the chaos in my life, it is slowing down. My mom was in the hospital and underwent an angioplasty and a double stint placement to open a 95% blocked artery. She is doing great now, feels like a new person she says. My dad has also been in the hospital recently. He spent 5 days inpatient for what we believe is a severe staph infection in his leg. He is now home on some very strong IV antibiotics and is slowly getting better. No idea how he got it, but happy to see that things are getting better and not worse. Now that all things are starting to slow down I am able to get some things in order and work on some things at home. February and early March are historically bad for me so I just have to truck my way through them... One day I will break this curse, but it isn't looking like this is my year. I am just hoping there aren't any big things like the last two years. Life can be boring for me, I wouldn't complain.

I have scans next week so we will see what they show and then have a continuing treatment plan.

Here are my recent neck/tumor pictures. You'd never really know much was there at this point. 

#worldcancerday and cost rant

Today, February 4th, is #worldcancerday. It is a day to not only get people talking about cancer, but to acknowledge all those fighting - whether directly or indirectly. For the past two years this day has fallen close to some very prominent events. Last year I had just been rediagnosed and was getting things in line to start my fight again. This year I am still fighting and I just lost my dear friend to this horrible disease. February is just a very hard month for me it seems. I have major life changing events happen in February - whether I like it all or not. Regardless, World Cancer Day seems to fall perfectly into my cancer story. I am glad there is some more awareness being talked about.

I have been home sick for the past two days and I started to look at some insurance claims and looked at my new med costs. Oh. My. Hell. How are cancer drugs so insanely expensive?! I am so thankful for insurance - I truly don't know what I would do without it. Here are the prices:
My first oral meds - that I didn't finish keep in mind. I still have a 7 day supply...
Mekinist: $10,335.20
Tafinlar: $9,028.70
And my new ones:
Zelboraf (14 day supply): $4,934.49
Cotellic (21 day supply) : $5,910.29

Amazing right? I really should add up how much was spent on me last year, but I truly don't know if I could stomach it. It is definitely more than $750K, easily. That said, with insurance it costs around $550/month out of pocket. For my first month I have been set up on a copay card that brings the cost down substantially.
Anyway, thought it was interesting and so I thought I'd share!

Hoping I start feeling better soon (it isn't side effects, it is a stomach bug) and that life starts mellowing out around me soon. We shall see!

AM Pills: $176.23 PM Pills: $457.67

*if I didn't have insurance that is

New Month, New Meds

Today I started my new meds - Cotellic (Cobimetinib) and Zelboraf (Vemurafenib). Try and say that 3 times fast... The Zelboraf are giant pills and I have to take 4 tablets twice a day, and the Cotellic are small and I take 3 tablets once a day for 21 days, then have a 7 day break from them.
Why the new meds? Well I ran into some pretty severe side effects all at once on my last combo of the Braf/Mek Inhibitors so we are trying this combo to see if we can still have some good tumor shrinkage still. These are still Braf/Mek inhibitors, just different. The best way I can describe them is to say that just like Tylenol or Aspirin both treat headaches, these both do the same thing just are slightly different. This combo is said to have a less aggressive side effect profile so things shouldn't get as bad as fast as it did with the previous combo.
My next appointment is February 23rd and I will have scans at that time to. We will reevaluate everything, once again, at that time.
I am happy to be back on a treatment because in those 10 days that I was off the meds my tumors began to grow and fast. I don't like being able to feel and see this cancer in my body let alone growing. Hoping to see them start shrinking again soon!

Thank you all for such sweet words following the loss of my dear friend Mandy. It has been a rough few days but also so amazing to see so many people sharing their memories and photos of her on social media. She was one very loved woman and is definitely missed.

Zelboraf pills