San Diego to Scanxiety overnight...

I had an incredible time on my vacation to San Diego. We packed the days with the Safari Park, Sea World and lots of good food. The most fun of it all was all the good times talked about and made. Knowing someone for 30 years means you've had a lot of fun times and have known a lot of people down the road. It was fun to reminisce for sure!
The first full day we went to lunch by the sea in La Jolla, it was gorgeous and tasty. We then headed to the Safari Park. Between the beach and the inland we gained 20 degrees in heat - landing at 94degrees. No fun on that front. Besides the heat - the park was great! We saw all sorts of cool animals, cheetah run a sprint and then the coolest thing on the safari part - a baby antelope was born seconds before we got there. Umbilical cord and everything, standing for the first time. So cool. Ashley came up from Orange County to meet up and spend the night with us. We grabbed a nice dinner on a patio overlooking the ocean in Del Mar and watched the sunset. That night we talked til 2 am giggling and then zonked.

30 Years of Friendship Here

 

Sun Hat Hazard... Sorry Jackie

Brand new baby, just standing for the first time. Umbilical cord and all. Fighting males (3) behind them

THE best local strawberries from a road side stand... delicious!

Our Dinner View

The next morning Ash and I woke up early and had coffee by the pool and chatted, nice and relaxing morning (sadly I slept terribly that night!) We then went and met my friend Morgan's family who live in San Diego for a champagne brunch. It was a great little brewery with a fun brunch. They had an amazing koi pond and live music. Ash joined us for that and then headed back up to Orange County.
Sunday afternoon we spent it at Sea World seeing the remaining shows and animals. That night we were exhausted! We came back to the hotel and relaxed for a bit, went to the hot tub. Morgans family came to the hotel and joined us for a late dinner and some drinks.

 Besties at the Pool

5yr old at heart... they won me a stuffed animal and a coin purse WHILE taking me to Sea World. Happiness.

Koi pond at Karl Strauss Brewery for brunch

The next day we checked out of the hotel and Morgan had to do some work so Jackie and I and Morgans sister returned to Sea World. We took in all that we missed, including a rollercoaster and water ride; both that I haven't done in years and felt like an old lady after once we were all disoriented from being jerked all over! (both the Safari Park and Sea World have short hours... 10-5/7pm) We then hit the beach for a bit and grabbed some Mexican food for the road and headed to the airport. And just like that the exciting weekend was over! It was a lot of fun, but I am still recouping! So tired still!

Toes in the sand and the Pacific = Reset

Adventures of the Sun Hat continue... 

Avalon, me and Jackie doing some amazing selfies

I had Tuesday to recoup and then Wednesday I had an appointment, Thursday I had scans and another appointment. To summarize what I learned from those appointments and scans so far. Not really much. Basically everything hangs on what the scans reveal. We did block out the surgery date if we go forward with surgery to remove the neck tumors. That date is June 8. So approximately 12 days away.. oy. It is a much easier surgery than I have had, but it is still a surgery and will be followed by radiation to the neck. Some clinical trials were brought up as well, both are paired with Keytruda (pembrolizumab) but both (and radiation) involved a wash out of the meds I'm on. I would be off of all systemic treatment for a minimum of 28 days and that scares me, worries me. I don't trust what my body will do with a month to run wild. So that said, I have had some intense anxiety happening lately. I am doing my best to control it but it is definitely wearing on me. One thing I have started to notice is pain in my hips again. This makes me think that the cancer is slowly starting to grow there again. Definitely don't like the physical reminder that it is inside. I have an appointment on Tuesday with my general oncologist so I hope to finally get a better idea of what is happening and get a plan. Once I have a plan that should help ease my anxiety a bit.

The. Worst.

This weekend is Memorial weekend here and so I am hoping to do a little BBQ'n and hanging out. Try and keep reminding myself that there isn't anything more I can be doing at this very moment to change where I am at. Just got to be in the moment and enjoy what I can right now.

Liver Biopsy Today

Today is when I get my liver biopsy - and I'm not looking forward to it in the slightest.

I am hoping it is going to be fast and that I will have some sedatives.. I know they don't put you out but I don't respond to the conscious sedation well so we shall see.

This biopsy will help determine what is going on with my liver and hopefully give us some answers as to why it continues to stay elevated as well as why it isn't tolerating any drug/treatment we have been trying. The doctors said that it is acting as if I have autoimmune hepatitis but that I am not testing positive for it, so hopefully a closer look at the cells and such will give a better idea of what is happening.

After they look at the biopsy they will decide if I should go on a liver med or just continue the steroids. Ideally I will come off the steroids and the liver med will regulate my liver enough that I can start a new treatment and continue fighting the cancer. As of right now I am not on any treatment and can not start a new one if I am on steroids. We really need my liver to start shaping up!

As of three days ago my liver numbers were trending down but still high, about 8-9x the normal. They will check them again today I believe and we should see what they are doing.

Here's hoping it is a fast biopsy!


***Update***
Biopsy went well. It wasn't nearly as bad as I had anticipated which was a huge relief. They gave me mild sedation, which actually worked, so I wasn't too anxious as it was happening. The pain wasn't bad either. I think the hardest part was having to lay on my stomach for 3 hours after the biopsy to help stop bleeding.

Also I wanted to make sure everyone knows that they are not doing this biopsy to look for cancer - they are looking for reasons why the liver is freaking out when I am on treatments.

We should have the results by Monday

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. 

My Sunday Night

Many people comment on how well I am handling this crazy situation and how positive I have stayed through all the ups and downs of this battle. Most days I do well and try to live my life like cancer doesn't have a hold of me. As I have said before, I made a conscious decision early on to not let cancer get the best of me and to approach it with positivity instead of anger. Some days are easier than others and believe me I have enough down moments, I just try not to marinate in them and focus on the things that are going good in my life.

All that said, you can't control the subconscious, as I learned the hard way last Sunday night. I was dogsitting one of my regular dogs and went to bed around 11:30. I woke up around 3am to go to the bathroom and once there I realized I needed to throw up. Not so fun, but just part of having cancer and being in treatment. So, I assumed the position and then proceeded to just wretch/dry heave violently without anything coming up. My body wasn't allowing it to come out, almost like holding it back. I know these are details that you probably don't want to know, but I was violently wretching over and over again, 10 times total. I sat next to the toilet and my mind began to wander and started to question if my body needed to get whatever was in me out and it wasn't allowing it. And then I started to violently shake, my whole body basically convulsing. And then started hyperventilating. I was semi coherent as to what was going on and then snapped out of it and realized that in this moment what is happening is crazy! I rushed to my phone and called 911. Yep, 911. I knew that I couldn't get anyone to me fast enough and I was terrified at what was happening. It seemed like an eternity before the paramedics got to the house and I tried to calm my breath and ease my shaking but had no luck. I was still insanely nauseous too. They finally got there and I was taken to the hospital (U of U, not the usual place but I requested to go there because if it was cancer related then I wanted to be as close to Huntsman as possible) I finally threw up on the way to the hospital which helped ease my mind, but I was still hyperventilating and shaking. Once at the hospital they started an IV and got anti-nausea meds in me as well as started fluids. I was able to reach my mom and sister who came to the hospital in the wee hours or the morning. Once my mom got there I literally started listing off things that needed to be done and random things, cause I really didn't know what was happening; just in case things went downhill from there. I started researching severe side effects to my treatment, came up with hyper-toxicity. I made her repeat it to me just so I knew someone would know. Doctors weren't too concerned with that and weren't thinking it was anything cancer related. I finished my fluids, my shaking and breathing settled and they sent me home around 10am.

I wasn't having hyper-toxicity, I was in the middle of a full blown, knock down panic attack. I didn't of course realize this until later that day when I was back home resting. I slept pretty much the entire day Monday and when I was awake I sat and thought through it all. I had feelings of shame and embarrassment and didn't even know if I wanted to share this with anyone. As a society we look down on weakness and vulnerability; and succumbing to anxiety is in the center of both of those things. It took me until later in the week to realize that this is just where I am right now. Yes, it is scary to think that I have bottled up so much anxiety about what is going on with me that it grew into such an intense and scary situation, but again, that is where I am at in this very moment. I have had a lot on my plate for the past few years (obviously more in the past year) and the past two months have been extra trying and new stresses have come up and then the stresses of what the future holds. It just gets to be a lot, more than I was aware of obviously. There were some other things that night that triggered some of this, but that is for another post.

I decided to share this because, well, why the hell not. The people who want to know my journey don't want to just know the big and good parts of it, they want the whole thing; the good, bad and difficult times. Also, not sharing it gives it more power and shame. If the people in my life can't handle that I have bad days, then they shouldn't be around me right now. They can jump back on when things get back to "normal" I suppose. I am embracing this hurdle and working on sorting though my anxiety - even if I don't feel it every day. I am working with my doctors to manage my stress and anxiety going forward. You can't help the situation if people don't know what the situation is. I am still figuring it out, but trying to own my story and all the stressors in it. I am serious when I say one day at a time, and sometimes 10 seconds at a time.