Broke out of Hotel Huntsman!

Hotel Huntsman (Huntsman Cancer Hospital) although very nice, is not where I want to spend my time. After one night there I broke out and was able to head home. 

Liver levels stayed the same overnight basically so no new spikes which is good. Met with the liver team and we are going to try and figure out what is happening with my liver and why it is reacting so drastically to all the cancer meds we use. Instead of throwing steroids at it forever we are looking into a drug that treats auto-immune hepatitis (that is how my liver is acting although it isn't testing positive for it) This would be a long term drug and have far less side effects than long term use of steroids. 

We will be doing a liver biopsy the beginning of next week sometime to get a better idea of what is happening on a cellular level so we can approach it the best way. How they do a liver biopsy I have no idea. Let me just say I hope I get put out 100% for it, none of this conscious sedation crap! I should know more by the end of today. 

I will also be going in tomorrow and getting my liver levels checked.

I have been pulled from my BRaf inhibitors/treatment for now. Couple reasons - one, I have to be off of them for at least 7 days before doing my brain radiation and two, my liver is obviously not happy about it. I am not looking forward to my tumors sprouting back up and it makes me nervous that I will most likely see some side effects from my lung tumors. I truly hope not. 

While in the hospital I did a crazy treatment to prevent pneumonia as well as some other viral infection that people on prolonged steroids tend to get. I had to sit in a plastic shell and breath some crazy stuff and blow it out into a filter. It was strange to say the least, but if it helps me avoid a separate sickness I am in. 

Cause this is the closest thing to smoking I have ever gotten.. ha. 

Also, thank you SkullCandy for donating a ton of headphones to the hospital! What a bonus to get while staying there. Can't wait to try them out! 

it's fo freeeeee

Looking back at biochemo days...

A year ago today I was at Huntsman Cancer Institute, checking in for my 5 day inpatient stay to start biochemo (3 chemotherapy drugs and 2 immunotherapy drugs all at the same time; 5 days on; 16 days off x 3 rounds) I was terrified. I had a good idea of what was ahead of me but also no idea at the same time...
Biochemo definitely was one of the hardest things I have ever endured. I don't remember the last two days of the 5 days inpatient, they are completely a blur. It may be that they push your body to an extreme toxicity rate that your mind just blocks it out. Who knows. All I know is that I am happy it is behind me and that I wont be doing it again.

Although it was brutal, it showed me a lot of things. It showed me what courage looks like, even if that meant just making it through the next 30 minutes of rigors (extreme shakes during a fever) or it meant making that lap around the hospital floor so that you got some extra circulation in your legs and blood flow in general. I learned what strength meant and I leaned on my family and friends to help build that up, day by day. Sometimes strength doesn't mean grinning and bearing it, sometimes strength means breaking down and sobbing while keeping your arm still as they place a PICC line. Or it means sitting up outside of bed and working on a puzzle so that you don't sleep the entire day away. Or dragging that dang IV pole around with me for 5 days... and courage not to punch it when it would beep at all hours of the night, talk about the worst noise ever! #Myarmy showed up and #teamlex was formed; I have never felt more loved in my life.

It's crazy to think how long I have been in the trenches with this cancer and hard to digest the timeline that is ahead of me but for now I am here, trying to make the most of what I have been dealt.

Melanoma, I hate you with a passion but I can't deny that you have helped me change my outlook on life and the people I choose to share it with. I have made the choice to face this with positivity and and possibility - to take the worst thing that can happen and make it the best thing that's happened. It is a daily struggle but worth the hard work.

I have come so far from this day a year ago and hope you all follow me as I continue this fight until the end. Thanks for those who have embarked on this insane journey with me (especially those amazing friends who met me in the lobby and honked at me driving up on day one, you know who you are!) I don't know what I'd do without you.

Love you all to the moon and back, a thousand times over.

xox

TL: Me and my IV pole, day one. TR: One of those moments I don't remember

And below: My message to Melanoma!

The Gong!

In the cancer world there is a gong or bell that you get to ring when you finish chemo or a cancer treatment. It is in the infusion room and once you are finished with your last treatment you get to ring that sucker!
Because my chemo was done in an inpatient setting, so in the hospital part not the infusion room, there wasn't a gong or bell or anything. I litterally just walked out the front door, no real closure or validation for the fight I had just endured. I had wished there was one so bad!

Yesterday when I finished my  last infusion I finally was able to ring the gong! I asked the nurse to film me as my friends had left by then, and she didn't catch it the first time so she had me ring it again! Two times - so perfect! For the two treatments I have completed. It really means so much more than you'd think. It is the little things in this fight that really mean a lot.

Here is the video of the second time.

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

Random Update

I’m amazed at how fast time goes by when you’re not really doing much - it makes sense that when you’re busy time flies! I have been pretty mellow, just resting and slowly recouping from treatment. Today marks a month since I started my third round. I can’t believe it. I also can’t believe how weak I still am. I have to continually tell myself to think of what my body went through this year and try to not be so hard on myself, give myself time. I went for a walk today and made it half a block before turning around.. It will take time to get back to to my normal - or to my new normal. I am thankful to be where I am though, I know what the alternative is and I hope to never be there. 

My nausea has gone away finally, I haven’t taken meds for it for about a week now. Eating every 2 hours has definitely helped with it and I am getting my taste back. One thing that has gone away is my sweet tooth (if I haven’t said that before) and it is the strangest thing. I was the sweets queen! My checks have “Life’s short, eat dessert first” on them. Now I don’t even want to see sweets. This will be good as far as losing weight, but it is just so interesting that such things can change your ways. Chemo for the win on that one. 

I am learning what it means now to fuel your body with food. Before food was a comfort and I mindlessly ate whatever I felt like - within reason, kinda. But now I am choosing foods that will help get me stronger and help with nausea and fatigue. I can feel a difference in the way the foods make me feel - something I never have felt before. Another good thing to come from this ordeal..

I still have not had coffee, and caffeine minus the couple sips of diet pepsi I had the other day, since the beginning of April. Caffeine adds to dehydration so that is why they made me stop and coffee was too hard on my stomach so they pulled that as well.. I suppose I could start back up but it just hasn’t sounded good and if I can kick sugar AND caffeine, well that’s a pretty big deal. I am sticking to water and crystal light for now. 

I am nervous to go back to work. My energy is so low that I just don’t feel I will be able to do the job I want to do or what they would like me to do. I know they will be more than accommodating for me but I just feel bad that they have to change things for me. I will have to slowly ease into work, but it will be good to finally have things I’m responsible for. I have a dogsitting job for the first part of July so that will be good as well. It has been nice seeing people for lunch and dinners and such lately though - I love my friends and family. 

That’s the random update for now, just passing time until scans in a week and a half. It really will be good to get those done and know what the next chapter holds. 

Love is Love

If you know me you know that Gay Pride is something I love to attend. It is one of my favorite days of the year and I have gone consistently for the past 8 years. I was getting sad when I looked at the timing of chemo and pride and it wasn’t looking like I would be feeling good enough to go. I have been really weak and can’t stand for very long and that’s all you do at pride is stand and watch the amazing people walk down the parade - at least that’s what we’ve done the past 8 years. Then I thought hey, why not bring a chair! Amazing right? My best friend brought me a chair and an umbrella and I got to enjoy the pride parade. I still wasn’t able to go to the festival but I felt part of the tradition. 

Although I have skin cancer and one of the main causes is the sun, I will not be a prisoner of the indoors. I will adjust what I wear and lube up on sunscreen and will enjoy an outdoor life. It may cause me some anxiety but it is just one of the things you can’t avoid - being in the sun at some point. I have bought some great hats and scarfs though and will be more covered up that in years past. I also have stocked up on new sunscreen - don’t want to run the risk of it expiring and not working. 

Hoping for a great and enjoyable summer and I am so happy I got to spend pride with some great friends.

Smart Doctors

I am so lucky to have some of the best doctors in the field of melanoma. Here is my general oncologist talking about the new advances in the treatment of melanoma. I hope to never have to need any more treatment but it is good to know so much progress is being made. 

Skin cancer immunotherapy is game-changer in surviving melanoma, doctors say