On my way to Cali...

Right now I am on a flight to California to spend the weekend with some long time friends. I have known one since I was 4 or 5. So let's just say it's our 30th anniversary of friendship trip! Pretty incredible when you think about it. Him and his wife saw that I wanted to go to Sea World/San Diego before my 35th birthday so they were kind enough to use their flight points to get me there and do hotel and car. Seriously so generous. We were supposed to go in October of last year, but surgery and treatment got in the way of that. This time we were able to plan a time quickly and I'm so thankful that cancer isn't getting in the way this time. I have my sun hats and sunscreen ready for all the adventures! I'm also so happy I have my appetite back AND have been cleared to have some adult beverages; or as my nurse said "you have some room in your liver for some alcohol!"  Thank you, liver! Champagne brunch just isn't as fun without the champagne! 

My best friend is going to try and come down for one of the days, as well as another good friend. Looks like a great weekend to be had! 

As I am sitting here on the flight (and as I was getting ready for travel, etc) I just keep thinking of how different things were just only a few months ago. I was in intense pain, couldn't sit in one spot for long, couldn't bend over to the ground, couldn't lift much; just so cautious of every movement. Now here I am, sitting for hours at a time, able to carry my carryon (and put it in the overhead bin!) able to grab my bag from the ground as well as baggage claim. Able to taste the drink I got on the plane. All while not being on any pain pills or patch. The body is an impressive thing I'll tell you. But I'd really like it if it would quit growing f'n tumors. Especially on my neck. 

My mind does wander on to think of what the next month will bring. None of it looks good; all of the options are hard. I'm thinking I will be having a surgery soon, but of course nothing is to planned on in this cancer road. Radiation. Damn radiation... a trial? Injections? Right now I have no idea. Won't know more until weds. I've gotten used to the waiting game. Doesn't mean it's easier, but at least I know that it's part of the game. Maybe game isn't the best description of it. It's something though. 

On my first flight today I sat by two lovely girls. We talked and joked about the conversation going on behind us (which was oh so entertaining!) and then I had to answer the question "so what do you do?" I've become use to the reaction I get when I say that I don't work right now and that I have cancer. I quickly follow up with something saying "but I do try and work when I can!" Or something that isn't so Debby downer. I don't want the pity eyes, and since I look healthier these days the pity look doesn't linger as long. You then gauge whether or not the ppl are comfortable with the subject or avoiding it. These girls were good and I could tell they were interested but didn't really know how to continue on. I brought it up later in the flight and we talked a bit and I got my PSA message in (or what feels like a PSA speech some days) but it's when you say "stage IV" or "it's in multiple organs" or "I had a feeding tube recently" that they are usually a little shocked. And that's when I realize how weird the cancer life is. Also how lucky I am to not look as sick as I truly am. All that said, it was a very enjoyable flight with these ladies. 

So, San Diego and fun here I come!On my 

Tumor/Airplane selfie

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!

8 Years

8 years ago I was told I had melanoma. It is amazing to me that it has been this long and this hard. Although there was about 6 years of calm, the last two years have definitely made up for it.

I got the call about my most recent biopsy (which wasn't a fun biopsy to say the least, don't know if they will ever get easier) yesterday and it is in fact melanoma. I had really had my mind set on it being scar tissue or something of that sort, but no. The most frustrating part is that the area is the dead center of where the radiation hit the hardest. That means that even with that much of an attack, those cells are that big of assholes that they are there still and growing. This doesn’t change my treatment plan, I will continue on Keytruda. What it does do is open up the option for a couple more clinical trials if my brain lesion stabilizes. This last week has been the first I have noticed headaches coming from the area of the tumors which scares me. It has subsided but it definitely was there.

Lately I have been a bit down about things. I think just because it’s been a long 4 months of fighting hard. And to find out that even with the hard treatments the cancer is still growing is a lot. I also don’t really have anything else going on besides my cancer fight so that frustrates me too because I usually am such a busy body. Right now I am just in a waiting game to see if I will be having any side effects from my treatment and can’t really make plans for too much until I know what that will be. When you feel that your time is limited (and it could be years and years, but still limited) all you want to do is anything but wait. I hate getting down about things that I can’t control, like the cancer spreading and such, but I just can’t help it these last few weeks. I am trying to work on it though.

This is when I have to work on things one day at a time, moment by moment. Hoping things mentally turn around soon. 

My fingertip is on top of or pointing directly to where the new tumor is. It is extremely small so I can't feel it at all, I just know from where the biopsy entry points

Surgery Day

Today is the day, surgery.

I have been blocking out what is ahead of me for a bit. Sure I have talked about it and shared the possible outcomes but I have been making my mind think that the day may not really come, that the surgeon will reschedule or that some miraculous thing happened and they began to shrink on their own. Of course none of these things happened, but we are here. I have 20 minutes until I have to leave the house. Things have gotten real!

Today is the last day I will have these tumors that I have gotten so used to for 15+ months. Not that I want to keep them,I just don't really remember what it is like to not have them as a constant thing to focus on. And who would think that I would be worried about missing my giant scar? It is going to be replaced by another giant scar, just more giant-er.

My hopes for today are that things go smoothly and that there is minimal nerve damage and permanent issues. I hope that the scar is as minimal as it can be, considering. I hope to wake up and be able to smile and move my facial muscles. I hope to wake up and be able to swallow on my own. I hope to wake up without nerve pain (just pain from the surgery). I hope to wake up to good news and not bad. Lots of hopes.

For now I am going to try and focus and get the final things ready for this big, life changing moment. My phone is blowing up with messages of love and encouragement. This is what keeps me going and staying positive and being brave.

Here we go.

Brain and Liver Update

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

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

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

Stage IV Realness - Surgery is Scheduled

Yesterday was a hard day. A hard day I wasn’t anticipating. I had my surgery consult to remove the tumors in my neck. I went in expecting a repeat of the surgery I had in February 2015 but this one is much more involved.

This time they will be doing another radical neck dissection and extending the current scar up behind my ear and a bit outward onto the scalp as well as extending the scar across the front of my neck. This will give them access to all the current tumors, around 6. The surgery is a long one and is much more involved than the first. I don’t really want to go into many details, but it is going to be rough. (If you truly want to know more I am happy to answer any questions you have) I will stay at the hospital for at least two days and then head home after to recoup. After I am healed to their liking we will start radiation; I assume about 4 weeks after surgery. And hopefully get my brain radiation then too. The goal is to remove the bulk of the tumors (it is impossible to remove all of them due to the intricate nerves and veins they are surrounding as well as the tumors are in tissue so the edges aren't clearly defined) and once the bulk is removed then hit it with radiation to hopefully kill the remaining cells. Radiation works better on a cellular level and not a bulk level, so it gives better chance at me killing the most cancer cells possible. 

Surgery is October 12^th. So basically I have just under 3 weeks to live it up before things get really real. I was sad to have to cancel a lot of things that I had already planned (two trips!), hopefully not letting down too many people and they understand the circumstances. They said I’d be down for about 6 weeks.

The hard part about yesterday was that reality slapped me in the face. I really, truly do have stage IV cancer and it gets scary. Decisions are hard and carry so much weight. Treatments are harder, more involved. I no longer have multiple options to choose from as far as treatments go. Things are getting more and more real, and the alternatives are just what you fear – end of life. As much as I do not want to have these tumors, this surgery will be a life changer for sure. The alternative is to just let them grow and then run its course through my body. There are some more systemic treatments available but my track record shows that these f’rs don’t respond to much and when they do they decide to stop responding at some point. Let’s not forget that my neck tumors started growing during biochemo – they are stubborn, painful, ugly shits.

As for the next 20 days I am going to do all that I can to enjoy myself. I am working on getting to California to see my best friend and put my feet in the ocean and maybe head to Disneyland. I am going to see my friends, eat lots of deliciousness, get ready to move into my own place at the end of October, work a little (it keeps me kinda sane) and just truly enjoy myself. I will have plenty of down time coming up that I can binge watch to my heart’s content. 

Liver ... I need you to work with me!

The liver saga continues!

I got the liver biopsy results today and it showed drug related inflammation and the same characteristics of autoimmune hepatitis. As not fun as that sounds, it is actually better for me for the moment. Because it shows the same properties as a compromised, damaged liver I am ok to start a drug that is usually used for liver transplant patients. This drug is called CellCept. I can also start tapering off, yes off, of the prednisone (steroids) that I dislike so much. The goal is to get me off of the steroids for a couple reasons, one being the long term effects are large and the general side effects are a lot to deal with (if you haven't noticed...) and the second and main reason is that I can not start a new systemic cancer treatment while on steroids. If everything goes well I will be down to 5mg or off completely in 3-4 weeks. Goodbye chipmunk cheeks, extra water weight, irritability, ravenous eating, shaking hands/body and sleepless nights! 

I also had my liver levels checked today and sadly they are elevated even more than I was when they admitted me two weeks ago, in the 700's. Thankfully they agreed that I could monitor from home and not be admitted to just sit in the hospital. I was worried that they were high again because I have been extremely tired the last few days and extra itchy (one of the signs that my bilirubin is higher than usual but I don't have any yellow discoloration). I don't have the normal symptoms of an elevated/pissed off liver like dark urine, yellow skin or eyes. If I start to see these things then I will go in, but even when I was at 1200 I didn't have these symptoms so I don't think it will be a problem. I am just happy to not be sitting in the hospital writing this! 

I will start these meds as soon as my pharmacy fills them - most likely Thursday morning (day after tomorrow) I am hoping that the side effects aren't too intense and are easier to deal with than the steroids. We shall see. 

So liver, I need you to work with me! Please tolerate and respond to this new med so I can move forward in treatment and not waste anymore valuable time. Just being off of a treatment for two weeks my tumors in my neck have started to grow. Who knows what is happening in my brain and lungs. I try not to think about it. Still no symptoms from those areas so I am hoping to keep it that way. 

Insurance Denial

I got a letter from my insurance informing me that they have denied my brain radiation. So frustrating. The reasoning doesn't make any sense to me either. The reason is this:

"The request for stereotactic radiotherapy does not meet SelectHealth's Stereotactic Radiotherapy Medical Policy criteria. The information we received indicates that there has been progression of the cancer outside the cranium. Therefore, the request for stereotactic radiotherapy has been denied."

So basically it is saying that since it has spread elsewhere (my lungs) that they wont cover it. Now keep in mind that radiation or surgery are really the only options for treating anything in the brain.

The reason for this is the blood-brain barrier, your bodies own defense mechanism to prevent harmful chemicals and such from reaching the brain like chemo and such. Surgery isn't an option because of it's size (too small thankfully!) so this is truly the only option for treatment.

My doctors haven't said it is final and that they will continue to fight the denial and hopefully reword it in a way that things will be approved. Regardless I will be getting the treatment, we will just have to work it out and pay for it out of pocket. Insurance is messing with the wrong army and the wrong fighter for sure - I think they just think people will just be ok with these decisions and not do the treatments. Nope, not here.

We will figure it out. I'll keep you all posted!

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! 

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!

Summer funk

People tell me a lot that they just don't know how I stay so positive when I'm in the middle of such a shit storm. Well some days it isn't easy. The decision to not live in anger or frustration is somewhat part of my personality but I just don't like that feeling so I run from it at all costs. Dealing with cancer is just one of those things. That said, these last few weeks have been hard. I can feel the effects of cancer practically all day and it is beginning to affect the things I do on a regular basis. My neck has multiple tumors and for some reason they are constantly pressing on nerves so that means constant pain which means constant meds on a schedule. I try to not let people see the harsh reality of the pain but it's getting hard to hide  

And then there is the steroid situation. Steroids right now are a necessary evil. Due to my liver toxicity/autoimmune hepatitis I need to take them to bring the enzyme levels down. Steroids have many side effects that have their ups and downs. The up is that they give you energy, but sadly it is false energy so you end up wearing yourself out more than you would normally. If you don't use the energy you feel kinda "buzzed". They make me pretty shaky and the heat makes all the symptoms worse. I went to a bbq yesterday and just being out in the heat made me extremely exhausted and so so shaky. It felt a lot like dehydration and/or heat exhaustion. Had to take a few hours to recoup. I just feel really physically weak. 

Like I said I don't like to notice and remember I have cancer - I don't like falling into the "cancer patient" roll. Too real. I want to enjoy my life as it is and not be reminded constantly that I'm sick. 

Anyways that is my rant for now. I just want to live it up this summer and really would like cancer to step aside. 

Radiation Consult

Today I went to a consult for radiation therapy. This was my third time looking into radiation. First was 7 1/2 yrs ago with my initial diagnosis, then again after my surgery last year and then today. Each time I have a deep gut feeling to run. Radiation scares me. 

This appointment was to decide if adjunct triggered radiation would help shrink the tumors and give me some pain relief. My regular oncologist had said it would be 5 concentrated sessions so that's what I had thought was going to be discussed.

Once the appointment started the 5 treatments were out the window and was replaced with 20 treatments over 6 weeks. Not triggered but a broad base. Doing such a broad based radiation carries a lot of side effects and also effects the regular tissue, not just tumor. As we were discussing all the things involved I hit my wall. The steroids I'm on make me more emotional and so it just was too much and I kind of lost it. I was just overwhelmed. Plus thinking of doing 20 treatments and not 5 was a lot.

We left that appointment emotionally spent and drained. I have the next big decision making appointment weds so we will decide what is next.

Some days just aren't good but there still is good in each day. I hit my emotional wall yes, but my mom and friends were there to let me vent and cry and just be in this crazy ride. I don't know how I got so lucky to have people care so so much and truly love me.

In summary, I'm terrified of radiation and really dislike being on steroids. And I love my family and friends. On to the next day.

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!

Father's day

Father's day was a good day, mostly.
I started the day out with a quick stop to the Wheeler Farm Farmers Market and had some breakfast. I then ran some errands and did some shopping. After that I went back to where I was dogsitting and played with the pup a bunch (sweet great dane) and then took an amazing and long nap.
After I woke up I got ready and headed to my parents house and we grilled steaks and had corn on the cob, beans and potato salad. All was super tasty and followed up with strawberry shortcake. I gave my dad some framed pictures of me and my sister and then one of my mom, sister and I. He loved them and was genuinely happy and enjoyed his day which made me enjoy it too!

Now the "mostly" part.. So that long amazing nap I took made me sleep through the normal time I take my neck nerve pain meds. I take them 3 times a day and can tell when I need them but was dead asleep so I missed it. I took them as soon as I woke up but knew I'd pay for the 2 hours of lapse. About half way through dinner the pain got pretty intense and obvious to everyone. We tried some anti-inflammatory gel but I feel like it made it a little worse. It got to the point that I finished dessert and headed out so I could lay down and try and figure out something to help. Nothing helped besides time, laying down (kinda) and my next dose.
It is insane to me the pain I've been having in my neck. My tumors are a fraction of the size they were at the worst and are causing almost as much pain. So so crazy. Hoping to begin to manage it better. appointment on Wednesday.

But like I said father's day was a good day, mostly.

Fever city

It's been three days since treatment and I've had a rough go. I've basically been sleeping mostly and dealing with practically constant fevers, ranging from 99°-104° (I almost went in when it hit that high but it went down as fast as it went up) I also have sweat more than I have in ages just from the fevers rising and breaking - makes for some good curls though.
Today I've had a bit more energy in the last half of the day so I'm hoping that I just continue to feel better as each day goes by. Being knocked down so quickly does a number on me mentally and definitely reminds me that I'm sick. It also doesn't help that I can feel and see my tumors growing. Yep, from being off meds for 11 days they have grown and in the last two days they have definitely grown and are tender. This could be all my TCells attacking the cancer cells like they are supposed to but we won't know until scans in July. Here's hoping!
Definitely going forward one day at a time.

Damn tumors... Hoping it is a good sign and not sure growing out of control

Live Updates From My full Day of Scans and Appointments

It is currently 4:18am and I am lying in bed, awake. Sadly I woke up from the pain in my face from the swelling around 3:45am and took some Tylenol (I know I probably should take something stronger but oh well) and then have been trying to fall back asleep since. I have been thinking of the day ahead of me, what needs to be done; take jewelry off at home, what I'm wearing today, what time I need to wake up to start drinking the nasty contrast for the CT scans. etc. And then thought I should write a blog throughout the day as I have time. My day starts at 8:30am when I have to start drinking the barium sulfate contrast. I will drink that for an hour and a half leading up to my scans. I have blood draws/IV placement at 9:30. CT scan at 10:15. MRI at 11. Psych follow up at 1pm. Then have a break to get some food in me since I can't eat before drinking the contrast. My sweet friend is meeting me at the hospital to grab food since I have a bit of a break. After that I then have my appointment with my oncologist at 3:30. Here we will get the results from the scans and hopefully get some more answers about what is happening with my swollen and painful face. It is a long, full day.
Many people ask who goes with me to all of this and often offer to join me. I usually go it alone unless I know big things are going to be talked about, then I may invite my family up. Even then I'm reluctant. I have been dealing with all this for so long (7+ years, and then heavily for 15 months) that I just feel it is annoying to bring someone else along for the long waiting game. These are long, drawn out days. My appointments usually take 2+ hours and I feel that is a lot to ask of people to sit around with me. I don't like sitting through it, why would I ask for the busy people in my life to do the same? I also feel like I have to entertain them to a degree and that's not what I'm there for. I know it is silly, because if someone asked me to go with them I would be happy to spend my time waiting with them. Ahh the crazy role reversal.
I'm going to hopefully get some more sleep now and will update this through the long day ahead. Gotta love being able to do all this on my phone! 4:38am and back to sleep I go (or try at least!)

10:24 @ Huntsman
I just finished my CT scan and am waiting for my MRI. They were able to get my IV placed on the first try which is always nice as I am a hard poke. My veins are sick of being bothered. I ran into some of my previous nurses and they agreed that my swelling is most likely inflamed parotid glands, what we do for those I am not sure. They also find it strange that my previous IV/blood draw sites all are flaring up... My body is just not liking things right now.  After the MRI I should be able to grab a snack before my 1pm appointment. Here's hoping!

12:16 @ Huntsman Bistro having a snack
All done with scans/MRI. It's always nice to have them done and out of the way for a while. My body really hates the contrast I have to have for them so that doesn't help either. Not sure how I feel about the scans, not sure if I feel like they are going to show progression or stability. The way I've felt the past 10 days gets my mind wandering to things I don't like but I try my best to not get too ahead of myself. I will say, no matter how many times I come up here I'm always in awe of the view.

3:06 @ Huntsman
Psych follow up all done. Pretty straight forward, went over managing anxiety related to everything and just options available to me as far as resources. Since my panic attack I've only had a few small anxiety moments but am able to recognize them quickly and calm myself down.
My dear friend met me at Starbucks at the U of U hospital and we chatted and had some mid day caffeine. Much needed - both the talking and the caffeine. She's dealt with cancer more than she should as well - losing her father and uncle within months of each other. She's a good person to have around and understands the cancer world and all it's craziness. She and I have become very close these past 15 months and I'm very grateful. Now just waiting to go to my final appointment at 3:30 to get results and answers about my face.

5:32pm @ Huntsman, still (in my car though)
I am finally done with my appointments. My last appointment was with my oncologist. Scans showed that my tumors have stayed the same for the most part since my last scans 8 weeks ago, no bigger but not smaller either. There are no new tumors and my brain is clear too which is great. Since I have basically hit a plateau and side effects are starting to pile up they feel the best thing to do is stop the BRAF inhibitors and switch to the Ipilimumab/Nivolumab combo. I'll go more into this in a separate post. This also means I can stop taking the prednisone which is great!
As far as my face swelling goes, they brought up a head and neck surgeon and he agreed that it is the parotid glands but said they aren't infected which is good. There is a very very slim chance it is mumps, yes crazy I know, but we still needed to do an additional test to make sure (which meant an additional blood draw since they took my IV out after my MRI). Regardless I can start to treat this at home with heat, massage and lemonheads. I can deal with that. I feel pretty good about it all for now but I am guessing I will start to think it all through more in the next few days. Right now I'm going to see a lacrosse game and a baseball game.

9:44pm @ Home
I decided to go see my friends daughter play lacrosse for a minute and then watched my favorite little tike play baseball, if you want to call it that. It was good to just decompress for a little bit. I turned my phone on silent and just enjoyed the simpleness of the night. Grabbed some dinner and now I'm home. I'm attempting to put heat packs on my cheeks but it is proving to be interesting in the least.
Processing the day a bit and will be heading to bed early tonight, as in when I finish this post.

It was a day. Not good, not bad, but a day. Happy to have it done and now have some things to move forward with and decide. Now let's hope the face swelling goes down quick and I can get back to looking like my normal self.

Goodnight.

Scanxiety with a side of good news!

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

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

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

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

Yay for a good scan day! 

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. 

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

One Year

Today marks one year since I knew for sure my cancer was in fact back. I got the call from my doctor around 5:30pm. I was driving to my friends to grab dinner. Once I saw who was calling I quickly pulled over on the side of the road. As he was explaining what was found, metastatic melanoma, I was numb but my mind was also racing so fast. I knew the second that I heard it was him calling, not his nurses or staff, that it wasn't good news. After we hung up I let up a giant cry, a bawl you'd say. I then called my parents and talked to my mom. I talked with a few people that night as well as my doctors at Huntsman. After sitting on the side of the road for a good hour, I finally headed to my friends and cried some more. We still went and grabbed dinner, I needed to eat.
The next few days were a whirlwind of doctor calls and collecting my thoughts. Scans were scheduled, more biopsies. Then came surgery and then everything else... And then we are here. A year later. I did so many things this past year I never would have thought I was tough enough or brave enough to do. In almost all the situations I didn't really have a choice and just carried on one day at a time, sometimes one minute or second at a time.

I am happy that I have some good news on this year anniversary. My tumors are all so small now, some I can't even feel anymore which is truly amazing. I just am in awe that something could be so big and then just fade away basically. Who knows where they are going, but all I know is I am more comfortable and handling this treatment well. My side effects have been minimal. Very tired the first week, that has diminished in the second week but has been replaced with hives and nausea. The hives aren't normal so they had me go to same day dermatology to get checked out. We are going to manage them and hope they don't get too bothersome - luckily they don't itch like normal hives. And I am sadly just used to being nauseous.

I have had a good time surprising people with the amazing results because they truly are unbelievable. Let's just say that there have been many many happy tears shed.

Here are some pictures to see how little they all are, and how great my jawline looks!

Today 1/14/16

Side

Hives