Ready, Set, Treatment type #15

Man I am a slacker in updating lately, guess that just means I'be been busy doing other things, good and bad. Here's what's been going on...

Scan results and such...
I had my appointment with my general oncologist to go over the scans and decide what we are doing next. As far as scan results go - relatively stable. There are some lung mets/lesions that are larger but most are the same or smaller. Liver, spleen and bones are all stable, if not improving. Front of my neck is obviously larger. My brain tumors are both smaller and there aren't any new tumors which is great.
Now treatment options...
It may seem that if things are stable, for the most part, then why not continue on what I'm on? Well because it isn't working on everything, it isn't safe to stay on the same treatment. We talked about the options in front of me and we decided to NOT do surgery right now and to restart Keytruda (Pembrolizumab) to see if that will take care of everything. Radiation isn't ideal, surgery just takes care of the problem temporarily, and I sadly do not qualify for many trials due to my past issues with my liver from treatments. We also talked about adding TVEC (a version of the herpes simplex virus) injections into my tumor on my neck. They knew my insurance would deny the injections, so we are applying for drug assistance. Keytruda is a good enough attack, but adding TVEC would just be that much better. I stopped the BRaf inhibitors and started Keytruda yesterday. Feel pretty good, just tired but that could be from having a fun weekend.

Treatment #15, Day one

Now to tell you about the fun parts of the past week. Last Thursday I knocked off one of the items on my bucket list - to speak to younger kids about my journey and sun safety in general. My friend teaches 7th graders and let me talk to the kids. I'm not going to lie, my goal was to scare them a bit so they stay away from tanning beds as well as lather up on sunscreen this summer. It went well - even when the power was out for almost the whole day. Not so fun when a lot of your presentation is based on pictures and videos and such! I did well talking for the entire class and we made them check their skin for moles and to just get familiar with their spots so they will know if they change. I also had them give me some more ideas for my bucket list. Man I got some good suggestions! Lets just say skydiving is the most suggested; not so sure on completing that!

Eat Eggs and Waffles. My type of bucket list item

This past weekend was my favorite time of year - Pride Weekend. Gay pride has been something I have gone to for 11 years now and love every minute of it. I am proud to be a gay ally and it makes me happy to see the support grow each year. This year we did the festival on Saturday and then the parade and a BBQ on Sunday. The parade is always fun, but man it was so hot this year! I started not feeling so great so I took a break inside a bar to cool down and get some more water in me. Heat just takes it out of me. After the parade we BBQ'd and relaxed for the day. Happy I was able to make it there one more year!

I decided to make a sign this year. Sadly it is the truth. No takers lol

This weekend I am headed to Portland! It is a last minute trip but it is shaping up to be a fun time. Tyler and Spencer were already going, Megg was going for work at the same time. I had a flight voucher. It all just lined up too well! Brooke made it work to go as well so I am excited for a fun adventure in the Pacific North West. I have never been so it will be fun to go somewhere new. Pictures to follow!

Added to the stack today... Eff You See Kay. 

Went on a little stroll in the mountains after brunch with a friend

Went to a Paint Mixer and painted my pups (well my parents and sisters pups)

My friends new company, Villmark. She chose me to model one of her neck warmers - check them out!

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.

Keytruda #2 down

I finished my second infusion of Keytruda two days ago and am feeling pretty good. This past 10 days though I have been having insane and indescribable body/joint aches. They get so bad at times all I can do is lay there still and wait for meds to kick in. They have seemed to build and then drop. For example, Sunday night I couldn't move and it took my meds over 2 hours to even take the edge off. And then yesterday (Weds) I was ok by the end of the night even though I couldn't move in the morning. We don't have a clear understanding as to why I am having these or what is causing them but my theory is that my body went from almost negative white cell activity to overproduction of white cells (which happens in your bone marrow) so I feel like they are like cancer growing pains. It has made me stay in bed a whole lot as the pain just drains me. Hopefully they begin to drop off and I can move on.

Keytruda #2, trying to embrace my little fuzzies

My liver and my other labs all have come back normal since starting treatment which is really great. Gives me a glimmer of hope that I can stay on this treatment for a while and hope it will get the knitty gritty from these damn tumors. 

I haven't been up to much lately besides resting. I get out as much as I can but lately I have felt like I have no energy to do much so I then, don't do much. I think part of this is also not having enough fuel in me to do a lot. My appetite is still almost nothing and I have lost enough weight that practically everyone mentions it. While I welcome weight loss it is still hard to know that it is from such a brutal way. I am down to my lowest weight I have been in YEARS. I am 35lbs away from the thinnest I remember being. I just wish it was a healthy weight loss and I was strong, and not so flabby. And that my boobs didn't go down so much too! 

I've been invited out of town the end of the month and am going to try and get stronger so I can do that. Of course we all know that a lot can happen in a short amount of time so I am not getting hopes up too high but it would be amazing to get out of town for a bit. And feel good while doing it! 

I went and saw Mandy's grave today and glitter attacked it! It was pretty fun. It wasn't a sad experience, more a goofy one. Just like we were when we were together. I've always wanted to just throw glitter around and I did just that today. I also got some new glittery nails which always will remind me of her. 

Next appointments are scans on March 17th, hopefully the lucky date will bring me luck! What to do until then...

Catching a cold

Yep, I caught a cold. Doesn't seem like much but when your body is compromised it takes a bit of a toll. Because of my liver issues in the past they wouldn't let me have any cold meds so I just lingered through the first week of it. And to my delight my liver has been normal for the two weeks after treatment so I got cleared to take meds. Here's hoping that they help and get this sucker gone!

But yep you read that right, my liver is behaving which is awesome! I'm 2 1/2 weeks out from my first treatment so that is good that it isn't hitting me. With the cold I don't know whether or not I have side effects so we will see with this next dose which is on the 28th.

My hair has definitely started to sprout which is great news for me. I am excited to have it come back in and not wear a hat or scarf everyday. I'm thinking a few weeks.

I've been pretty mellow and not been doing much so there isn't much to report, besides sleeping a lot and lounging. Hoping this cold gets moving and I can start doing more with my days.

Feb 12

Feb 19

I know it doesn't look like much but it is starting to come in!

Treatment Option #12

Today I started my new treatment, the 12th option, Keytruda (Pembrolizumab). Keytruda is the last approved drug for melanoma that I haven't tried, so we have made it through the list. Pretty crazy. I knew we would come to this point but it is still weird to think about. Regardless day one is in the books and done. Infusion was very very fast in comparison to my chemo treatment infusion (2 hours vs. 7+ hours) so it was crazy to be done so fast. I will be going every 3 weeks and I can definitely get used to 2 hrs up there.

I hope to tolerate this treatment well and not have any hiccups. I'll be keeping an eye on my liver, as well as the other side effects, but the liver is the one I'm worried about. Tonight I am pretty tired, but I also have been going most of the day where I would have never been able to do that the night of chemo. I hope this continues. I also hope that my eating and tastes continue to improve as well. As much as I like the weight loss I've accomplished through chemo (not a good weight loss program...) I know it isn't healthy and need to not drop more. Also there is a high risk of being on steroids in my future so to gain weight after losing so much isn't healthy either. But, trying not to worry about that too much.

Biopsy of a spot by or on my parotid gland is tomorrow to see if it is melanoma or just inflamed/scar tissue. If you have read through my blog from the beginning of all this, you know how hard my biopsies have been at times. It is weird that I am not worried about it and not worried about having it. Show up, get it over with. Regardless of the results it wont change the treatment options. It will just show if down the line if it is melanoma then it adds some additional treatment options added.

Treatment option 12 I hope you treat me well!

Infusion Selfie

Baldy and showing my original scar