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! 

Care Package

My amazing best friend who lives in California sent me the sweetest and most thoughtful care package.
She is a school psychologist and had her kids all make me handmade get well cards. They range in ages but they are all grade school so they were pretty funny ones.

Knock-Knock jokes and all!

He also said he loves turtles on this card - and cheddar Pringles of course

So sweet

These warmed my heart. Some said that they hope I get out of the hospital soon so they must have made them when I had been admitted. There is something in having "Stay Strong" and "You Are Brave" written in little kid hand writing. Just so pure and simple. 

My best friend truly is the best. 

Pool Day

Today was spent relaxing by the pool with a friend that I literally haven’t seen since 8^th grade. We grew up down the street from each other and then lost touch as we got older. Thanks to Facebook we reconnected and then thanks to my illness and some other factors we truly connected in the real world. Although so much has happened in our lives since 8^th grade, we are still so similar and parallel in ways. She has been a great support for me as she’s been in the patient role as well and knows the frustrations and ups and downs. It is different when people know what you mean when you talk about some of the medical things. She also is extremely healthy and is helping with my steroid cravings and just overall good health – I promise I am trying my best to follow suit!

Her husband is an uphill runner. Why that is considered fun I have no idea at all. Literally I was mind boggled asking him questions about it. He legit just runs up mountain sides to peaks – runs. He had a race up at one of the ski resorts today so we came up to relax by the spa pool and catch up on our chats and then watch him run. The pool was great, we stole half the umbrellas like vampires and just sat and relaxed and snacked and talked and it was really good for the soul to escape the valley for an afternoon. We then rode the Tram up to the peak to watch him finish his race. He took second place by barely a few minutes and still was jogging up the last part, which was sand mind you. He had no idea we were going to meet him at the top so he was pretty excited to see his wife there cheering him on. It was the first time I met him and so it was a pretty memorable meeting if I do say so myself.

As I was driving home I just kept thinking how crazy this life truly is. If 20+ years ago I could have thought forward to where my life is now I would never think even a quarter of it would be the way it is. You can plan all you want and have these ideas in your head of what you want or what it will look like, but nothing goes as planned. Life throws you curve balls and you turn in ways you didn’t think you would, for good and bad. But it all turns out. Although it isn’t the life I ever imagined it would be, I still am grateful for where I am and the people around me. Even with cancer it isn’t all bad.

Selfie at Hidden Peak, Snowbird, Utah

I mean really, does he look like he just ran up that mountain in an hour? Amazing.

Sporadic selfie 

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!

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.