I'm a 34 year old Utah girl who is fighting stage IV melanoma for a second time. Former caramel queen and coffee slinger. Finding out whats next, one day at a time.
I have gotten that questions about 5 times in the last day so I guess I need to clarify what exactly is next for me.
In my last post I talked about scan results and the new tumor in my neck. Although this is new information it didn't change my treatment plan for now. I am still on the at home chemo which is the BRaf inhibitors. I take meds twice a day at home and don't go up to the hospital for treatment for now. We do monitor my blood work closely though - make sure my liver is behaving, my white count (nuetropenia levels) and my cancer growing marker (which is coming down thankfully.)
As of right now I have blood work this week and they will be discussing me at tumor board again this week. After that I have a follow-up/more blood work on May 2nd.
I am still on the pain patch, though we are working on lowering the dose and moving to just breakthrough meds. My pain is very minimal now which has been nice. My fatigue has improved and I can make it through the day without a nap most days (though there is a lot of being lazy.) Eating has improved drastically over the last week so I hope to stabilize my weight and hopefully stop losing more weight. Never thought I would be wishing to stop losing weight... Cancer does strange things to you.
Yesterday was Easter and I enjoyed a brunch with some friends and then a good family dinner.
Cousins *you can see my new tumor poking out, basically looks like a small Adams apple
This is a picture of one of my favorite kids (well he is 18 now...) and on his lacrosse helmet he wore my initials. Pretty amazing guy.
A lot of people ask how my port works so I decided to film it getting accessed and a blood draw. It doesn't hurt and is extremely simple and helpful. For anyone considering getting one, do it! Definitely one of the best decisions of my cancer fight that is for sure!
The last two weeks have been a roller coaster that is for sure. I finally got out of my fever/sleeping/aching and have been able to function semi-normal. Each day has gotten a bit better.
I decided to head to Park City with some girlfriends overnight and I had a great time until mid dinner when my stomach decided it was done. Luckily my friends are great and we just all went back to the condo and hung out and chatted. The day and night were fun and I got some great sunglasses, too.
I had my appointment on the 5th and the night before I just happened to put my hand on the front of my neck and felt a lump. About the size of a blueberry, but definitely there. These are the moments in this craziness that I just crumble and my mind races and runs. At the appointment we biopsied it and decided to move my scans up to the next day. We decreased my pain patch dose as that may have been contributing heavily to my extreme fatigue. I also had a followup with my neck surgeon and he officially "released" me from his services. Basically means I don't have to go back unless more surgery is needed/requested.
New tumor is in the middle/front of my neck (where the dots are)
That night I went home and bought a ticket to California to see my best friend. I needed to run away and just take a break from being the cancer patient. I knew that I could go down there and sit on her couch if needed and it would be good and make me happy. If I felt good then it was a bonus! So I decided to keep it a secret from her and surprise her when I got there. It was great to see her face and surprise! We had a great time and I felt really good the whole time. We ate a lot - even me! Went whale/dolphin watching on a fun small boat - didn't see any whales but a good amount of dolphins and it was a great time regardless. That night we met up with a friend we both hadn't seen since 10th grade! It was so much fun to get together and remenise about the crazy times we have had and catch up. The next day I was on my own while everyone was at work and I slept in and then went to the beach and around town. Although I was beyond tired each night I was beyond happy and it is all worth it. Also, they have a new pet pig that was a lot of fun to get to know and snuggle.
I had to fly back in time for my appointment today to go over scans. Talk about a downer to return for! The results are mixed as yes, the new lump in my neck is cancer but it has a different chemistry than the other tumors. This can mean that the cells are forming differently because of the treatments I've been doing (still am not clear if that is good or bad?) The tumors in my liver are larger BUT all the other spots in my body are smaller. So my brain, lungs, spleen and bones are all shrinking and responding to treatment. We decided to still "ride the wave" as my doctor calls it and stay on the same treatment (BRaf Inhibitors Mekinist and Zelboraf). My white count is low though and so I am nuetropenic so we did a dose reduction for that since we don't want to end up with a hospital visit for it. Overall it was a positive appointment and I am feeling good so I hope to continue on this upswing. I am liking feeling semi-normal again and having energy and an appetite. Also my hair is growing lots!
One sad thing is a blogger I follow (and 20k+ others) Dear Melanoma/Emma Betts, sadly passed away this week. She was 25 and fought stage IV melanoma for over 3 years. Many people tell me to not follow these people as it is just too sad. For me it helps me feel connected to people who are going through the same thing and bring in some reality of things. I may know too much about how the end days of this disease look like, but it doesn't scare me. I guess it just makes me more informed overall.
No big plans coming up. Trying to make it to Moab for a wedding at the beginning of the month. Going to try and work a bit. Do my taxes. Finish some things around the house. Garden/plant some things. All the random things.
