Not Goodbye...

This week has been a really hard week. As many of you have heard me talk about my melanoma soul sister, Mandy. Well she has truly struggled from the moment of diagnosis. She literally got every side effect from any med she was on. On top of that, her cancer spread quickly and very aggressively. On Wednesday she was told what we hoped to never hear and that is that the cancer had reached her brain. On Thursday she was told her body is too weak to continue fighting and that she no longer can do any more treatments - it is too far advanced. Friday we said our goodbyes or see ya laters. And last night at 6:53pm she peacefully slipped away.
When I left on Thursday night I was thinking it was the last time I'd see her. She was not really coherent and in constant pain. She could barely speak and when she did it was so quiet and sparatic that it was hard to understand what she was trying to say. It hurt my soul to leave the hospital that night. I thought of her nonstop the entire night - not sleeping well. Then Friday came and I got a call from her sister asking me to come up. Mandy had wanted me to come see her and truly say goodbye. She had chosen to be done and was making steps to end the struggle - removing her feeding tube, slowly going off of her oxygen and stopping all prolonging medicines. The goal was to now get her comfortable and at peace with the next step. I got to the hospital not long after 2pm and by the time I got there she was not up for anymore visitors. I chose to stay there and in the lobby, just in case she changed her mind. Her family would come join me when they needed a break from the room and we grabbed some food and passed the time. It was 5:45pm and her mom said she wanted me in the room. I put my brave face on and entered her room. To my surprise she was coherent, talking and smiling. Just that sight brought me to tears and she just continued to wipe my tears away. She told me I had to take the fighting crown and kick its ass. She told me how important I was to her and how she thanked the universe for having found each other. She said that if heaven forbid I can't win the battle that she will be there with open arms to welcome me. I asked if she were scared and she said no, that she is ready to not have anymore pain. She then said that she was really weak and couldn't talk more and so we said our final "I love you's" and see you later, but hopefully not soon. I left the room with much more peace and calmness - and tears - than I had before but I knew that she wouldn't be here much longer. I stayed around the hospital for another hour or so and then finally felt it was ok for me to leave. I kept my phone close all night, and then all morning. Then all afternoon. I then got the message that she was gone. Even though I knew it was coming, it still took my breath away. A phone call from her mom just broke my heart as she apologized for having me lose my melanoma sister - through her tears.
Today I have been able to see how many people love Mandy and all the amazing posts on social media about peoples love and sadness over losing Mandy. It's been pretty incredible. It is hard to think of continuing my battle without her physically here, but I know she is going to be right by me every step of the way. Giving me her strength, which was incredible and unwavering. I am so happy to have met this beautiful soul and all she brought to my world in the brief 6 months we had the pleasure of knowing each other. I have gained another family - an amazing one at that.
I wont lie, it is also very scary for me to think that I have the same thing that just took my dear friend and to see what it is capable of. I know each persons struggle is different and not everyone has the same path, but it is hard to not let your mind start worrying and thinking the worst. I will just have to think about how hard she fought whenever I have moments of weakness and am scared.
It truly is a battle to be fought one day at a time, and on this day I am going forward 10 seconds at a time.

Mandy, I truly feel you are my soul sister and I love you dearly. Thank you for sharing your life with me these past 26 weeks which feels like so much longer. I have so many things that will remind me of you that it is hard to list. It is little things that will always make me smile. I hope you are singing and dancing again, and remember I said you can't haunt me, but only come hang out. You fought hard and strong and cancer definitely didn't win, your body just wasn't ready for how strong your mind and heart were. I am so excited to have the most beautiful guardian angel. I hope that you are with my Gram (who also passed on 1/30) and that you both are laughing and smiling like you both did best. I love you sugar, to the moon. 11:11 forever.

Here is the link to Mandy's Melanoma page: Mandy's Rhythm of Hope
As well as some of our pictures together.

Never a Dull Moment

There truly isn't a dull moment in my life sometimes. I feel like I am on a roller coaster at times - go from not having much going on to having everything going on. 

On Thursday and Friday of last week I was sick with side effects and then told to stop my meds for a break. On Monday morning I found out that my mom was taken to the hospital for heart pains the night before. Turns out that she had a 95% blocked artery and she had 2 stints placed. She was in the hospital for 3 days, but now is feeling brand new she says. The doctors say that she barely escaped a major heart attack and that it is good she came in when she did.

I went from sitting with her in the hospital to Huntsman to sit with Mandy, who is getting progressively worse. 

My doctors appointment was Wednesday and we decided to try another type of Braf inhibitors and see if the side effects don't hit me as hard. It is hard because in just this short amount of time the tumors have begun growing, which is very scary to feel and be aware of. I will start the new drugs either Friday or Monday at the latest. My doctors don't seem too concerned about the break in treatment but I can't help but wonder what that will do. If I react with strong side effects there may be an option of switching to a PD1 drug such as the Niv/Ipi combo or Keytruda. We shall see how the new meds go. 

And then I think I have caught a stomach bug... All the fun at once. 

One day, one moment at a time.

Side Effect Party

I decided that all my the possible side effects decided to show up at my party... Meaning I literally got so many different ones all at once.
First lets start with the "hives." I have had these red marks starting to appear since around the 10th of this month. I assumed they were a normal skin reaction to the meds but when I called my nurses to let them know about them they were a bit startled and said they sounded more like hives and then sent me to same day dermatology (which is a great new thing here btw!!) Doctors there said the same and upped my allergy meds and put me on a topical steroid gel. The red marks are not itchy but man they are painful and sensitive. They started to appear more and more and the same ones were there from the start - they didn't come and go. After about a week of using the additional allergy meds and gel the marks weren't getting better and were increasing in size, quantity and sensitivity. My nurses then got me in to see someone in their clinic who works with cancer lesions and he agreed with me that they weren't typical hives - and most likely were something deeper. He took biopsies of two (dang big biopsies I will say) and we will find out more when those come back.

That night I carried on as normal, took my meds and headed to bed. That's when the side effect party started. Now I have been having chills here and there as well as night sweats for a little over a week so I wasn't surprised that I had some chills. Usually they subside with the help of a good amount of blankets and possibly some puppy snuggles. This night was different. They weren't budging. Then came the joint aches and head ache as well as nausea. Then fever. Then more chills. Then vomiting. More fever. More aches. More nausea. It was not a good night/day. I was able to finally eat something around 3pm and then quickly returned to my cocoon and things seemed ok. I was able to reach my medical team and they decided to pull me off the meds for at least the weekend to let my body rest and rule out whether it is med related or a virus I picked up. That night I had chills, fever, joint aches and night sweats like crazy. It didn't last as long thankfully, but it was still a rough night. I am pretty positive it is med related so it makes me nervous whether or not they will let me continue on them going forward or if they don't feel it is safe since most side effects are compounding. I am thinking they will let me know Monday or at my appointment Wednesday. I guess we will have to just wait and see and just work through these side effects for now and enjoy not being on anything for a couple days at the least.

You never know what to expect with cancer... One day at a time!!

Biopsy #1 (6mm punch)

Biopsy #2 (8mm punch)

They look like nothing hear but there are dozens of the red marks that feel like deep, deep bruises

Looks like a bruised ankle but they are the marks

Life of a Patient!Also look at that neck! Can't even see there were tumors there!!

Thoughtful Gifts

Through out this year many people have bought me things - basically I have been beyond spoiled to say the least. This past Christmas I was given some very thoughtful gifts that are based on my cancer battle. First was from my good friend Erica who bought me a very nice stainless steel bracelet (from Mark and Graham) with a secret message engraved for those close enough to read it (I'll let you read for yourself) She didn't want me wearing the traditional plastic cancer bracelets so she upgraded mine. Then my good friend Sara got me two Pura Vida Bracelets and one of them benefits melanoma and the Melanoma Research Foundation. Pretty great gifts if I must say so! Thanks friends!

#melafuckinoma was too long so this was the next best thing... 

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

Kickin' my tumors ass!

I started my new medicine on the morning of Friday 1/1/16. It is a BRaf Inhibitor which means it blocks the BRaf mutation I have in my tumors, then allowing my body to fight it. It is two medicines - Tafinlar twice a day and Mekinist once a day. The trickiest part of taking these meds is they have to be taken on an empty stomach and have to be taken 12 hours apart - lets just say timing dinner has been a bit tricky in my all over life. I am getting used to it though.
On Sunday I realized I had forgotten to take my nerve pain medication in the middle of the day and realized I actually wasn't in as much pain as normal. Same thing happened on Monday. On Monday night I was able to sleep on my side (either one) which is something I haven't been able to do because of severe nerve pain since the beginning of December. On Tuesday morning I decided to take a good look at my tumors and to my disbelief, they have totally gone down!! And I mean a substantial amount. I take tumor pictures often just to mark the growth for myself and for my medical team, so I decided to do a side by side picture:

Bad lighting but the left picture is 1/1/16 and the right is 1/5/16

I am shocked at how fast the medicine is working and my tumors literally are shrinking each day. Here is the picture from last night (1/6/15). 

Still even more. I am amazed and am trying to not get my hopes too high as multiple doctors have told me this is not a permanent solution. For now it is amazing to have the pain relief from them going down as well as having little to no side effects. I have been very tired and had some headaches, but nothing compared to the nerve pain I was having. I am assuming I've been tired because my body is fighting extra hard to shrink the tumors.

We shall see how much they end up shrinking overall! I am amazed with the results in not even a week! Amazing.

Hello, 2016

Happy Happy New Year!

Oh what a year it has been!

2015 brought some of the worst of things yet some of the best of things. My New Year’s resolution last year was “No Hospitals.” Welllllll, we all know how that worked out. I spent more time in the hospital – inpatient and out – than I ever have in my whole life. I know Huntsman like it’s a good friend’s house.  I have formed a hospital family with all the amazing nurses, PA’s, doctors and techs. I see them sometimes more than my good friends. I have become ok with being poked nonstop and my veins definitely aren’t fans of all this. I have met amazing people through this journey – and I wouldn’t change that for the world.

Although cancer ruled everything this past year, it has also brought some of the most cherished moments of my life. I have seen the people in my life show up for me like I never would have imagined in my wildest dreams! My numerous fundraisers have consistently brought tears to my eyes of gratitude and happiness – still to this day.  It is amazing the love that I am surrounded by.  I celebrated my birthday in the most amazing way – and still shocked it was kept such a secret! I was able to travel multiple places when I felt good, knowing that I need to seize the moment more and live in the present; whether that is at my house, the hospital or on a beach somewhere. I made a decision early on this year that I can’t be mad and frustrated all the time about what is happening with me. I chose to be positive and fight with a smile because it takes just as much energy to be upset and angry as it does to be accepting and find the silver lining in things – which is sometimes hard to do. Know that I have my moments of sadness, frustration, anger and exhaustion, but I choose to not reside in those moments. I let them happen and then move forward. Do not stay in those emotions, but know that tears are necessary.  

2016 is going to be the year I beat this f’r once and for all. Know that I won’t stop fighting this battle and I won’t let it take my smile. My resolutions for this year: Be selfish, and be a murderer.  Never did I think those would be my hopes for the New Year – but I want to murder these tumors and this cancer. It’ll happen.

Thank you for following along in my journey, your support and love make things so much easier and I truly don’t know what I’d do without you all.

Happy New Year!