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!

Lazy days

Man have I been pretty lazy lately. 

This last chemo has hit me a bit harder than the others in the fact that I have had a good amount of bone aches and just overall exhaustion. I could lay on the couch pretty much all day but try my best to get out of the house at least once a day. There has been a few days without that happening and I'm perfectly ok with that. It's hard to know if it is just low white counts again or if I am going towards anemia. Only way to know is with the blood tests and I don't have those again until Tuesday. 

Eating has been really hard lately as well. The things that sounded good these last few weeks don't sound good anymore and then there isn't much else that has taken its place. I have been craving shrimp a lot though. A friend mentioned it may be because I might need the iron or something, totally understandable if so. I am trying hard to get a good size nutritional shake in each day so that I have some vital nutrients in me. I still throw up every morning (minus a couple mornings this week) so I will be excited to be over that phase. 

Tomorrow I have a neck ultrasound to see if I still have any remnants of a blood clot in there. I truly hope I do not because I'm pretty sick of giving myself blood thinner shots twice a day and I'm pretty sure my stomach is sick of it as well. I will say I've gotten pretty good at them though. So weird to think I am good at that... my life is weird. 

Now the big stuff is on Monday. Scans. These scans will show whether or not we will continue on the treatment we are on or if it isn't working. If the tumors are stable or smaller, we stay. If they are bigger or there are new ones, then we go to the next option. The next option I have no idea what that is. Makes me very nervous to think I am coming to the end of not having many options to try, makes it all a little too real. People have asked how I have been feeling about these scans and I really can't say clearly that I think they will be ok. I hope I'm wrong and that things are working and all this really hard stuff I've been doing since October has been worth it. We will find out on Tuesday. If all is well I will get chemo #5. We shall see.

Last week I went with little Ruby to her infusion of Nivolumab (Opdivo) so I could see what her day looks like. Man, they need to redo the outpatient chemo/infusion center over at Primary Children's Medical Center. It was such a rough and crowded room to be in and it just needs windows or something. I don't know. It made me even more grateful for my insanely nice infusion room. She was a champ though and has handled things so well. That little girl just makes me fight harder just cause she is fighter more than she even knows. She knows she's sick, but she's been very lucky to not feel it. I hope this for her always. I want this drug to work for her so badly. 

As far as fun stuff that has happened, there hasn't been too much. I try going out to eat mostly but it is hard to find things that sound good to eat - but I still go! That's usually what I end up doing to get out of the house. My energy doesn't allow for too much more than that, but it is plenty for me. I love my social time! I am trying hard to get my random second room in my place all put together, but man I have held onto some random stuff that is for sure. I think I'm making head way though. 

I'll also just say this as well - I will miss President Barack Obama. In just a week since our new president so many things are in the air and it's amazing the level of comfort Obama gave me in regards to my illness that I can feel is threatened now and it just makes me sad. It's amazing how one person can change a whole outlook on things. I wont go into detail because, well, it's too much for me, but I am hoping to not have anything hit me too soon as far as the healthcare stuff goes. I already have my hands full, hoping to not make it be more. I'm barely lucky to have insurance right now (that's a post I decided to not write because it is just too much.) Anyway, here's hoping that whatever they propose it will take some time to go into effect. 

This wasn't a very uplifting post - sorry about that! I've been pretty mellow these past few weeks so not much to write. Hoping for some good news to write on Tuesday! 

oxoxo

Oh, my shirt is relaunched again as well until February 2nd. go to booster.com/notjustskincancer if you want one! 

2 hard years down, still fighting

Well soon to be 8 years total. Today marks two years since I was told my cancer had returned with great aggression. I received a phone call and pulled to the side of the road, it was a Wednesday night around 6:30pm. I know exactly where I was and knew this isn't good. I cried so hard that night and many days to follow.

In those two years I have fought so hard. I have had two major surgeries. I have had more scans and tests and blood work that I can't even keep track. Numerous biopsies. I have tried all but one of the approved treatments for my cancer (outside of clinical trials.) I have lost my hair twice. I have lost, then gained and then lost 30+ pounds. I have spent many nights in the hospital. I have fought with insurance too many times, but luckily have always come out with them by my side. I have formed friendships through the hardest of times, us facing the hardest battles of our lives and have lost one too near and dear to my fight. This hasn't been a fight without dark times. I have lost my smile more than enough to be proud of. A good cry is necessary, you just can't stay there or else the cancer wins.

With all that I have endured, these two years have been great in their own right. I have strengthened friendships that will last a lifetime. I have traveled and explored all different places because, why not? I have moved into my own place and settling in. I got fish today. I have realized that my beauty isn't just in looks but that my internal strength shines through more than a glimmer of makeup. I have embraced the small dumb stuff because that's what makes me happy and makes the world what it is. I have learned that people are better than things and traditions are worth making. That a surprise coffee or treat to someone you care about will make you happier than a new outfit (that should be a given though). I learned to enjoy every meal because you never know when that exact meal will be so hard to eat and taste like absolute garbage (still working on this...) Enjoy that glass of champagne because it may be the only one you're allowed to have (stupid liver) for a good month or two. Hug people and tell them why you have them around cause you don't know what tomorrow brings for either of you.

I'm two years into the hard battle, and who knows how many more years I will be given to fight. All I know is that I will make the most of it all to the best of my ability - with lots of naps in between.

I appreciate you all being along for this crazy battle and fight and cheering me on each step of the way. Your love and support mean so much more to me than you'd know - and I can't say that enough. From every text message, surprise visit and the insane monetary and time donations you have given - I'm still in awe. I'm still in the fight and am glad you're with me.