Another Clinical Trial

I have decided to participate in another clinical trial. This trial is looking very promising and is far less invasive than biochemo was. This trial is injections into the tumor of HF10 (a modified herpes virus) as well as infusions of Ipilimumab. The first month I will have 4 HF10 Injections and 1 infusion of Ipi. Then it will go to one of each per month. If the tumor doesn't shrink within the first month I can come off of the study and switch to PD1 treatment. It is nice to have options. The side effects are flu like symptoms and some bowel issues, all things I can handle. I hope to be able to start working again if things aren't too hard on me.

I had a rough day yesterday. I went to breakfast and then to the farmers market. At the farmers market it was 102 degrees and it hit me like a bag of bricks. I felt nauseous, weak and began shaking badly. It was awful. I sat down and my friends got me wet rags and Gatorade to help. My friend had to drive up back to her place where I sat and recouped for a couple hours. It's things like that that remind me that chemo is still in my body and I'm not back to normal even though I feel much better than I have the past couple weeks. Just got to still give it the time it needs to heal.

June 26, 2015 #lovewins

Proud LGBT ally today! Love won!! #loveislove

Chapter 4 of the battle

As some of you have been following, I had my follow up scans this past week. Going into them I was anxious and had some bad feelings.. My fears were confirmed when the doctors came in with a sad tone and face. I have a new tumor growing in my neck. I can feel it so I am not surprised, but I would have loved for them to tell me that it was just scar tissue. A fine needle aspiration confirmed it was melanoma.
I had two treatment options presented to me. One is a clinical trial with HF10 (a modified herpes virus) in combination with Ipilimumab and the other is PD1 (Pembrolizumab). I have chosen to do the clinical trial as it is providing very good results so far. If the trial isn't showing good results I will switch over to PD1. Treatment will last 4-9 months depending on how my body tolerates it.  I am starting hopefully July 8th.
This is sad and frustrating to know that chemo didn't work and that this is an agressive tumor as it grew during chemo. I am clear everywhere else though, no evidence of disease anywhere else in my body or my brain. It needs to stay that way. I am hopeful this treatment will help me finally beat this cancer once and for all.
I'm planning on getting back to normal (or as close to it as possible) in the next few weeks and hope the side effects don't get in the way of summer. I am still taking things as they come and one day at a time - it's all you can do, and fight!

Happy Fathers Day!

Happy Fathers Day! Love you Dad 💜

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

Pride

Happy Pride! Don’t mind my awesome set up.. #pride #loveislove (at Salt Lake City Pride Parade)

Little Rant

So I have been waiting for the bills to come in from biochemo to see what the dent is. I am on my own insurance, Obamacare persay, that I got on my own - not through my employer. I am a full supporter of all the progress with insurance and Obamacare - without it I would not be able to have insurance due to a permanent spot on the “preexisting conditions” list (thankfully that has been done for a few years!) Regardless, I have good insurance that I am very happy with. Onto the rant…

I got the explanation of benefits (EOB) for chemo and was BLOWN AWAY! For one round of my chemo they charge the insurance $83.8K! Unreal!!! And the allowed amount is $50.4K… The difference is more than I made the entire year last year. Keep in mind I did 3 rounds of this… That’s $251.5K ($151.4K after the adjustment) in treatment… an entire house! A really nice one. So my upset is that if I didn’t have insurance how would I even come close to affording even one round - thus the flaw in the medical system. People would still (hopefully) get treatment and then claim bankruptcy causing the cost of health care to continue to rise or wouldn’t get treatment and succumb to the disease. Just sad. 

All this said, I am not sure what my portion will be of this, just waiting to see. I feel so bad for the people who can’t afford the same coverage and treatment as I do. I am lucky that I have been able to have coverage my entire life (minus a short 5 months - and just not having it for that amount of time scared me too much). 

I am scared for what the next president will do with the healthcare system, but hope I can keep my status as insured for the rest of my life. 

End rant.