My friend is real fast!

I got to go and see my speedy friend be rewarding for being the fastest stair climber for the day and for the record.

It was for the OutClimb Cancer Challenge - a fundraiser for Huntsman Cancer Institute. He's a competitive guy and he was in it to win it and he did! The challenge was to run up 24 flights of stairs. He completed that in 3:03. THREE MINUTES! Isn't that insane? That's 7.62 seconds per flight. I'm super impressed to say the least.

There was also a record beat for times up the the stairs and it was 52  times for men and 50 for women. Pure madness and I can't imagine how sore their thighs and calves are still..

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!

8 Years

8 years ago I was told I had melanoma. It is amazing to me that it has been this long and this hard. Although there was about 6 years of calm, the last two years have definitely made up for it.

I got the call about my most recent biopsy (which wasn't a fun biopsy to say the least, don't know if they will ever get easier) yesterday and it is in fact melanoma. I had really had my mind set on it being scar tissue or something of that sort, but no. The most frustrating part is that the area is the dead center of where the radiation hit the hardest. That means that even with that much of an attack, those cells are that big of assholes that they are there still and growing. This doesn’t change my treatment plan, I will continue on Keytruda. What it does do is open up the option for a couple more clinical trials if my brain lesion stabilizes. This last week has been the first I have noticed headaches coming from the area of the tumors which scares me. It has subsided but it definitely was there.

Lately I have been a bit down about things. I think just because it’s been a long 4 months of fighting hard. And to find out that even with the hard treatments the cancer is still growing is a lot. I also don’t really have anything else going on besides my cancer fight so that frustrates me too because I usually am such a busy body. Right now I am just in a waiting game to see if I will be having any side effects from my treatment and can’t really make plans for too much until I know what that will be. When you feel that your time is limited (and it could be years and years, but still limited) all you want to do is anything but wait. I hate getting down about things that I can’t control, like the cancer spreading and such, but I just can’t help it these last few weeks. I am trying to work on it though.

This is when I have to work on things one day at a time, moment by moment. Hoping things mentally turn around soon. 

My fingertip is on top of or pointing directly to where the new tumor is. It is extremely small so I can't feel it at all, I just know from where the biopsy entry points

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

Scanxiety

The never dull life of a stage IV melanoma patient...
This week I had my scans and appointments and chemo scheduled. I don't know if I have been as anxious about scans as I was this time around just because it holds some solid weight in what the next options are. Although I have been feeling alright with things and haven't felt any new tumor growth in my neck, you never know with the rest of your body.
I was able to get down the nasty contrast they make you drink and was able to do the scans without problems luckily.
My appointments were early the next day. Turns out that I am stable again which is great news, just besides my brain. There is some toss up as to whether my first brain tumor hemorrhaged or is just flaring from the treatment, but either way is larger. I am not having any side effects in relation to that so we will just continue to watch it closely. My lung nodules are the same size if not smaller and then my neck has just one area that we are going to biopsy to see if it is tumor or scar tissue. It is around my parotid gland. With all this news we decided to no longer do the current chemo regimen and switch to Keytruda (Pembro). This is the drug that Jimmy Carter was on and has kept him in remission for almost a year now. We have avoided going on this because of my sensitive liver but the doctors say that hopefully since resetting so many cells that it wont be as sensitive now but we will continually check my blood levels and see where we are. Keytruda is also the very last approved treatment for my cancer. After this it will be me going back to other options or adding clinical trials to the mix. My insurance is pushing back on it right now but we are hoping to get it approved and start treatment next week.
Although I am excited to see how Keytruda works for me I am also very nervous about my liver and this being the last option technically. Just puts worry into my head. My liver now is great and actually low so that is a good starting spot. I will be happy to get my hair back too, can't wait to see the little hairs start growing again! I should also feel pretty good on the treatment in comparison to chemo so it makes me hopeful that I can begin working again and just getting back to life. Chemo life isn't so great, it's a very tired existence! The treatment is given every 3 weeks by outpatient infusion and I can be on it for up to 2 years. Treatment option #12 I'm coming for you!

Monday also marked one year since Mandy passed away. Definitely a bittersweet weekend and day. I had dinner with her mom that Saturday and then was at the hospital on Monday when they came to do a pay it forward to the people on the 4th floor. It was so great to see them all and get hugs on that day in particular. They have been so great in my journey that I just can't imagine it without them. And I really can't believe it has been a year already. I am planning on getting some glitter nails or something done this week to just have the reminder of that sweet girls smiling face (and now that I don't have anymore chemo planned I can have them done again! Who'd ever think you shouldn't get nails done if you are on treatment?!)  Love you Mandy.

As for the rest of my life there isn't much going on. I have been trying really hard at eating and keeping weight on but it has been really hard. I lost another 5lbs in 3 weeks. While I am loving shrinking and all, I know it isn't a healthy weight loss so it isn't ideal. Also there is a high chance of steroids in my future so I can't get too used to this smaller figure. Things just still aren't tasting like much and then things I liked 2 weeks ago aren't good now and it is just weird! Still working hard on it though.
I am also trying to get my second bedroom/storage area all situated and organized. I am completely a hoarder that doesn't know what to do with some things. Lets just say a WHOLE lot has been donated!
I got some fish ... then they all died... so I got a single betta. Gus Gus is doing good so far, almost 5 days in and going strong!

Also it is the last day to order the #melafreakinoma shirts from booster.com/notjustskincancer  they are so dang comfy that there has been 4 or 5 people ordering doubles! Yay for awareness and comfort!