Little shits

I'm talking about my two new tumors on the front of my neck. Yep, two. They are small (one you can't even see but I can feel it) and they aren't growing fast. But they are growing. This means they aren't responding to the systemic treatment (BRaf Inhibitors) so we need to attack them in a different way. Sadly, that other way is radiation. I was told this was the next option over a week ago and it took me a bit to be alright with it and tell people. Tuesday is when we confirmed that that is the best option going forward. They did ask me what I thought (which they do with all treatments since I control the situation for the most part) and I said "you will never hear the words 'I want radiation' come out of my mouth, so this decision is on you to tell me I am doing it." My doctor said it was a no brainer decision from him as radiation worked on the other park of my neck (for the most part since only one small tumor remains) and having a break in the BRaf pills has actually proved to be more effective in the long term. In order to do radiation I need to be off of the BRaf and do what is called a "washout" which basically means time for it to leave my system, for me that is 7 days before and after radiation. I will find out Monday the plan for when to start radiation and stop the BRaf as well as how many treatments I will be getting. I also will be getting a new mask made and possibly more tattoo markers. They feel that I most likely will not get as many treatments as I did last time (20) and will probably get 5-10. If this is so, then my side effects should be much more mild in comparison. Doesn't hurt that I wont be doing chemo at the same time, like last time. My body will be able to stay stronger through this than it did before, or so I truly am hoping. Good hell I hate radiation though...

Pointing to the second tumor. The bump that looks like an Adams apple is a tumor as well

That said, I may be speaking to 7th and 8th graders about my radiation experiences in the coming weeks.  I have wanted to speak to younger kids about my melanoma in general but man it is a lot to tell! My friend is a science teacher and he suggested to narrow it down (and try and connect it to science) and so I figured radiation would be best and it has the most show and tell props (mask, burn pictures, tattoos, bald spots... you know the works!) I hope to do this in the next few weeks before school is out for the year. Better get my butt in gear!

My hair is growing super fast which is great. As of April 1st I decided to not wear a beanie/hat at all times and that seems like ages ago. I got some steps shaved in and those are pretty much out grown. I have taken a picture each Sunday since the new little hairs started to come in and now have 3 months worth of pictures and it is pretty amazing to see the change. Still holding out for curls though!

Life has gotten a bit more regular. I have had a good amount of daily energy where I don't require a nap each day. I also have had my appetite back and actually am tasting things again. It has been nice to have food that actually tastes how I think it should. It's been a long time coming for sure

I have been getting some things ready to plant in my yard and am excited to watch it all grow, going to plant them this week sometime now that the weather is warmer. I have been seeing a good amount of friends and enjoying feeling good again!

Me and tiny PipSqueek the baby goat

New Tumor. California. Mixed Scan Results.

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.

New 'Do

I finally decided to chop all the straggly long hairs I have been holding on to since losing practically all my hair during biochemo. My hair has started growing pretty fast so the new hairs started to take over and make the longer hairs seem like a Trump combover. Not a fan. So I cut it all the same length and to my surprise I actually really like how it looks! I know there will be a lot of awkward lengths ahead, but I'm interested to see how they all look, and what ones I will like! Here's to #shorthairdontcare!!

Treatment #5

I completed my 5th injection/3rd infusion Wednesday. It was a long day yet again, but that is to be expected. My large tumor has gone down another 1cm and the smaller tumor has gone down .5cm! Excellent news! Because the large one went down, we were able to inject both tumors with the drug. The small tumor is farther away from my scar so it has a lot more sensation, and let me just say it wasn't a pleasant feeling. Felt like a hot iron being held to my skin.. But it is over quick enough.
This day I was bombarded with positive comments from my doctor and all my nurses. They all commented on how well I've been handling everything and how strong I am being. I was told my positive energy is a breath of fresh air and welcomed in the clinic. It was really nice of them all to share with me, really gave me a second wind for the day.
I have been really tired the last few weeks - whether it is from doing more everyday or the treatment, but I think it is a combination of the two. I have felt so much better each day that it is hard to just sit around. Working up my stamina - gotta return to work someday!
The infusion went well too, saw a lot of young people in the infusion room. I posted a photo on Instagram and someone who was getting treatment found it and commented. She is 32, has stage 4 Melanoma and is going through the same treatment as I am. I saw her check in to the infusion room too! So I'm hoping to meet up with her, to have a buddy in this process. Pretty amazing what social media can do! I also got a message from an old high school buddy that works up at Huntsman and has been trying to catch me while doing treatment but without any luck. He said to keep up the good fight and that I'm inspiring people I don't even know are watching. I needed all these nice messages today - was starting to get a little burned out. But not anymore!

After treatment I was really sore and a bit nauseous. Boo! Was hoping to escape side effects fully, but it isn't too bad so it is manageable. Just lots of rest ahead and some mellow foods to eat.

Have three weeks off until my next treatment/infusion and then will be scanned to see if we continue with the injections (for up to 13 more). Here's hoping!!

In the infusion room @ Huntsman Cancer Institute

After the injections

Tumor from the front

Slightly smaller!

Messy new hair!

Baby Hairs

It has been over a week since my last treatment (injection/infusion) and I am feeling so good! I haven't had any side effects besides some fatigue but I don't really count that. I am hopeful that I will continue to not have any and things just keep going as good as they have been. It is really a great feeling to have energy to do things and not be sick. I feel like I am starting to have a handle on my life again, which is a great feeling after 8+ months of dealing with my cancer returning.

My hair has really started to grow - I didn't realize how much until I took a picture of it and compared it to one I took on 7/22. (2 1/2 weeks ago) Here are the pics..

7/22/15

8/7/15

It's amazing how much I lost but I am still thankful to have some of it left. My doctor said that I lost more than most people who go through biochemo. It's not a ton, but they are baby hairs and they are there!

Here is a picture of the tumor(s) and the size they are today. .

All in all things are going good and I couldn't be happier. I have two more weeks off before the next treatment and have some fun things planned.

xoxox

Treatment #3 Done and New Hair!

Wednesday I had my third treatment and all went well. Last weeks injection made me super swollen and huge, this one not so much which is nice. Hopefully that doesn't mean it isn't working as good.. but we shall see. The injections haven't hurt really thanks to me not having any feeling on that part of my neck due to surgery. It has been a bit tight from the swelling and I can feel it inside my throat it was that swollen. This round isn't that bad. Next week I have my next infusion of Ipi and I am supposed to start feeling more of the side effects after that.
One fun thing that started on Monday is my hair is starting to grow back from chemo! My friend pointed it out and I told her that was a mean joke to play on me, but when I looked it really did start that day! It will be a slow process but I can see a dark hair in each follicle, it's a start! I'm excited to see what it is going to grow back in as... curly? a different color? We shall see!
I went to Bear Lake this last Monday for a night. It was a good getaway. I went with Maryann and Marty and their two boys, Ben and Jack. We camped and went to the beach. Had some food and just relaxed in a beautiful setting. I was pretty tired when I got home but it was worth it.
Today is Pioneer Day in Utah and I'm looking forward to my dads insane firework show tonight. He is a nut and has some of the biggest and scariest fireworks - it's great! I love big fireworks and it is always good to have the whole family together.
Tomorrow I am hopefully going to California to see my best friend until Tuesday. I am flying on a buddy pass so here's hoping I get on the flights! Her cousin, aunt and mom are visiting too so it will be a fun group of people. I need to go to Cali every 6 months or so for my sanity.. I am overdue. It will be good to get out before more side effects kick in.
I may have cancer but cancer doesn't have me. I will have as much fun as possible as I feel better. On to the next adventure!

 Tumor borders

 Extremely thin hair but with lots of little guys coming in - especially in the front! 

(scar on my scalp is from my first round of Melanoma in February 2009)

 Right after the injection - not too bad!

Beautiful Bear Lake, Utah