Happy Halloween!

Halloween is my favorite holiday! I love to get dressed up and see what people come up with. This year was no exception! I was Sadness from the movie Inside Out.

Happy Halloween!

Passport

So as I said I am going to Mexico on Sunday. Well you need a passport to get into Mexico, which I have but I could not find it! I looked where I thought it was and nope, not there. I then looked through everything at my house that I could and still no where. Thats when I realized that it is probably in my dang storage unit.. Yep. I packed it away.
See here is the reasoning that I did this. In early 2014 I had back surgery and had some major complications. I moved in with my sister after surgery to recoup, not thinking I would be there long, maybe 3 months? I really wasn't planning on staying once I was better. Well I had complications and wasn't able to return to work, thus no income really so I had to permanently move from my place with my roommate and into my sisters. I decided to store all my things in a storage unit, again, not thinking it would be more than a couple months. Since I wasn't able to lift really anything at the time, my dad has some of the guys from his work help move the things into the unit and thus it was packed so terribly that you couldn't get into the unit at all. Nothing had an order to it and things were everywhere. Complete disaster. It doesn't help that I have sooo much stuff. I have enough stuff for a full house (minus the furniture), all season decor, as well as an entire business (Sweet Janes, hence the name of this blog if you ever wondered). Once I realized my passport was somewhere in there I paniced. I luckily have some amazing friends who were my muscles and helped me disect my hoarding unit, I mean storage unit. We were about half way in and came across my gun safe (I don't have a gun but was going to have one so my dad bought us gun safes) and a memory flashed that I put it in there! And luckily there it was! Success!
After celebrating finding it, we repacked the things in somewhat of an order and took some things to donate and some things to throw out. It turned into a good day, even though it didn't start that way!
Passport is now in hand and lesson learned, never pack such important things. Safe deposit box may be in my future... Mexico here I come!

This is what we had to start with... Good hell.... 

One of my amazing helpers! 

Success!!

After, I know it doesn't look much different but it is 1000 times better!

Soo happy to have found it!

Hurricane Patricia

On November 1st I am going to Puerto Vallarta, Mexico as a birthday trip. It is the biggest trip I have planned since all my cancer fun started in January. Granted I have gone to Seattle and some local places in Utah, but nothing this big! I haven't left the country for 3 or so years, and haven't been to Mexico for 7 years. I am going with my mom and her friend and then two of my best friends - I am pretty excited!

All that excitement has been slapped in the face when I got a text from my dad asking if I am tracking the hurricane approaching Mexico. Well I wasn't worried about it until I started looking at the news reports and realizing this is the biggest hurricane to ever form in the pacific, if not everywhere. If there was a category 6, this would be that. And it was heading straight for Puerto Vallarta. 

I watched it make landfall tonight and it isn't looking as disastrous as it was expected to be. Hopefully things will be alright to go in a week and that the city is still in one piece. They aren't reporting much from the ground so we wont know until tomorrow I am assuming. We've checked on canceling and it doesn't look like it is much of an option at this point. Guess we shall see!

***UPDATE***

Patricia didn't hit nearly as hard as expected and our resort as well as our excursion place basically weren't effected by it. So the trip is on! We will see what the city looks like, and hoping there isn't much flooding or mudslides like they are expecting. I am excited to still have a vacation and that really no one was injured! So great!

Caught by Surprise

Yesterday was my treatment day and surprisingly it went very fast for a treatment day. My blood draw was quick - first poke which was nice! And then the doctors were on schedule if not ahead. My doctors aren't usually on time which can be frustrating to most people but when you realize they are dealing with some very intense situations and patients. I mean it is a cancer hospital.. When they are in your room you are their #1 priority and they will stay in there as long as needed, until every question is answered and everything is covered. So I have to keep that in mind when it takes 1-3 hours to get seen. It is just part of this crazy journey! But that wasn't the case yesterday, they were early! My drug/injection was released quickly too so after I was measured (my big tumor is bigger by about a centimeter and my small one is smaller by about a half centimeter) and some side effects were discussed we did the injection and I was on my way. We injected from a different angle and I felt it more but it wasn't too bad.
I then left and actually worked an event for a friend for 3 hours and then finally went home to relax. Even though treatment days aren't really that physically hard, it is mentally challenging so it is nice to just have the evening to do nothing. I got some food, watched some tv and headed to bed. .
I have been dealing with some insomnia lately. I could be absolutely exhausted and lay down to sleep and will lay there half asleep for hours. So that was the case last night. I headed to bed around 10:30 and then at 1am was fully awake, shivering. I kept thinking "how am I so cold?" I was under multiple covers and the heat was on.. then it hit me. These are the side effects they had warned me about all along with the injections - chills, fever, body ache. I felt my face and it didn't seem warm so I continued to lay there. After about another 30 minutes I finally decided to take my temperature.. 100.3. Damnit! I also had some strong nausea and ended up throwing up. Double damnit! I am housesitting so I was alone and didn't want to fall asleep and go into a huge fever so I set my phone alarm for every 45 min to keep checking. And the fever kept climbing.  I started googling at what level do you go into the emergency room for a fever. Just so you know, that is 103. As it kept climbing I started to think of who could take me if needed and how annoying it will be to have to explain my entire medical history to the emergency doctor and what they could even do for me. At 4:15am my fever hit 101.9. I set the alarm for 30 minutes and finally at 4:45am my fever broke and was at 99.4. I was then finally able to fall asleep for real and I woke up purely exhausted. I was still nauseous too. I had to go to work for a bit and I made it through that and came back and took a good nap.
I am thankful the fever has not returned today, here's hoping it stays away. I was so caught by surprise by these side effects since I haven't had them at all through all this. They were saying that the farther out from the Ipilumumab the more the injections will have side effects. I am now 6 weeks out so we shall see how the next round does.
The study also added scans to my next appointment. They want them 9 weeks after stopping the Ipi. Scans are on 11/10 and my next appointment is 11/11. It will be interesting to see if anything has changed in the short 6 weeks.

I'm grateful that I haven't had many side effects during this treatment but man last night sucked and caught me by surprise! Now I know what to expect going forward!

Miles for Melanoma Salt Lake City

Yesterday was the first Miles for Melanoma walk in Salt Lake City. It was a gorgeous morning for October and it was good to see people out supporting a good cause.
I was told about this walk by a cousin just days before, on Tuesday. How I hadn't heard about it I don't know. But what I know is that it definitely needs more publicity for next year. I am up at the dermatology clinic every 3 weeks, if not more, and there wasn't any signage or anything for it. Also, I follow many melanoma pages and also nothing.
I put out my fundraiser feelers on Thursday night and within one day I had reached my goal (only $100 but still) by race day I had raised over $340. By the end of Saturday I was close to $500. My army is amazing!! They have been soooo giving through all this and then continue to give. It truly amazes me. Because of my amazing army, I am the #2 fundraiser for the walk overall and was given a prize of $100 gift card to Best Buy for being the fastest fundraiser. Pretty amazing if you ask me!
The walk had maybe 50 or so people there, no signs, very minimal. It made me frustrated to think that if it were a breast cancer walk that there would be 100's if not 1000's of people there. It also doesn't help that October is breast cancer awareness month so it already is overshadowed. I was still grateful for the people that were there and you could tell that they all were affected by this horrible cancer personally.
I was joined by my cousins Brooke and Jayne as well as my #1 supporters Maryann and her son Jack. I knew I wouldn't walk the full 5k and when I woke up that morning I was very nauseous so I wasn't even going to walk at all. Luckily Maryann encouraged me to at least try to walk some of it and so I did. I made it maybe 1k, or half a lap around the park (which has some gnarly hills) and then decided to not push my luck. I then watched all the amazing participants finish. It was a good day overall.
Jack, who is 6, is one of my little buddies. I guess when his mom (Maryann) said that they were going to come to the walk for me he said "but she isn't even sick anymore, I mean I don't even really notice her neck anymore." Sweet kid. But sadly I am still sick. I may not look like it so much anymore, but it is a battle with myself. I put a good face and foot forward and try to act not sick as much as I can but sadly I am still sick. I still have a cancer inside me, it just isn't beating me up as hard as it has a few months ago. Every day is a battle with fatigue, headaches and nausea. Thankfully the nausea has gone down but I still feel as though I could sleep all day. I force myself out of the house just because I know I shouldn't just sit around all day. I'm glad people think I am doing better though - as I am MUCH better than I was earlier this year. Sweet kid for being so honest about it all.

That said, I am not going to let this bring me down. I hope to get more involved with the walk for next year and make it bigger and better. Here is to fighting melanoma one step at a time!

Tumor Questions

When people realize that I have a tumor (well two...) in my neck there are usually some questions. I figured I'd answer some of them here as I would assume most people have the same questions/concerns.

What is it growing in/on?
My tumor is now growing/living in the tissue/muscle in my neck. It isn't a lymph node as I had pretty much every one of them removed on that side in February 2015.

When did it start growing/how did you find it?
It started growing/forming in probably April 2015 while I was on biochemo (not a good sign.) I could feel a hard lump by my scar, was told it probably was a scar bridge/scar tissue, but it wasn't until June 2015 that we confirmed it was a tumor and metastatic melanoma through a biopsy and CT scan.

Why don't they just remove it?
There are a couple reasons for this. One is that since it isn't a lymph node or contained it is hard to remove all of it without leaving stray cells behind which would just continue to grow. A surgery would just be a temporary fix and the tumor would return. Another reason is that the treatment I am on it is necessary to have a tumor to inject into. If you remove the tumor you no longer are able to be on this treatment. The goal is to kill the tumor instead of removing it. If at any time I am sick of the tumor I can request they take it out, for now we are going to continue on the treatment trying to kill it for good.

What about radiation?
There are a lot of things to consider when deciding on radiation. One major thing is that melanoma doesn't respond very well to it, making it less effective. Also there are a lot of permanent side effects that are very serious that I didn't want to risk.

Does it hurt? Do the injections hurt?
The short answer is, not really. Because of my surgery to remove the lymph nodes on that side I have nerve damage so the surface (most of if) is numb so I can't feel any pain in that area. I do have some nerve sensations/burning at times and tightness but not so much constant pain. The area is very tight, but luckily it isn't painful. As far as injections go, if they inject into the large tumor I can't feel it really, just a slight pressure as we are adding fluid (approx. 5ml) to it. If they inject the smaller one there is more sensation on the surface so I do feel that one a lot and it isn't fun to say the least. It is an intense burning pain/sensation.

How many more injections do you have to do? 
Right now I have 12 more injections available, given every three weeks. If the tumor is gone before the 12 injections then we will stop them, or if there is any health concern that would validate them pulling me off the study then they will stop them. As of right now I am planning on all 12, or 36 more weeks of treatment.

What are the injections?
The injections are of a virus directly into the tumor. The virus is a modified herpes simplex 1 (the cold sore virus). Since we know that the body responds to herpes we are injecting it directly into the tumor. Your body then sends white cells (a whole ton of them) to the area. Once there the cells realize something else is going on and begin to attack the melanoma cells as well. The melanoma cells then burst and die (that's the hope). It also should act like a vaccine and form a cell memory for melanoma and kill any stray cells through out the body now and in the future.

When the tumor dies, where does it go?
When a tumor dies, your body reabsorbs the cells and does away with them. I don't know how that truly happens, I just know that the body flushes them out on its own. Sweat? Pee? Poo? Who knows...

Will you have herpes then?
There is a chance that I may develop cold sores, but it is not known for sure. As of now I haven't had any problems or cold sores. I am not allowed to share food or drinks while on this treatment just to be sure I don't spread the virus to anyone else.

Can I touch it? 
Yes, definitely. And no it doesn't hurt. People love to feel it and are usually surprised at how hard it is.

Are you sick of talking about this?
Nope. This is pretty much my life right now so it is most of what I have to talk about. I am happy to answer questions people have, it also spreads awareness of melanoma and that it isn't just skin cancer or on the surface - that most of the damage and danger is internal.

Let me know if you have any other questions!!

This is the most recent picture of the tumor...

Scan Results

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

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

Lots of bloodwork... 

The nastiest thing.. 

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

Tumor before injections 

Tumor outlines and the biopsy/injection marker 

After injections/biopsy... 

After...