I'll be truthful here. I could write a pretty bitter chapter this week. But I'm keeping to a short post. And then I will try and get over it.
This may be the hardest part of my journey yet. Not giving into those bitter feelings. Recognizing them when they come, but letting them pass right through. I do not want to give them any of my energy.
But. This week hope has stabbed me in the back.
As much as I want to believe that a good attitude about the whole situation will improve my prognosis, I don't know. So far it hasn't worked for me. Three years out of this I totally 100% believed I would never see cancer again up close. Six months later it was back. The beginning of this week I just knew this treatment would work and I would live years and years because of it. Can you imagine my surprise?
How do I feel about the results this week? How would you feel if someone peeked inside you and found a body full of tumors? It's creepy. There are tumors in the armpit, chest wall, breast, near the kidney, liver, bones, and back. Other than the liver and bones, these are new since my last scan 5 weeks ago. So it's not looking good for me.
I am not giving up on IL-2 all together. Of course there is a chance that this next dose does something amazing. But most likely I will "fail" this treatment. Josh asked if this was my first experience with failure. For sure with something this important, my one out of two treatment options. I do think the IL-2 will help the Yervoy (or IPI, the other treatment I will try next) work better. There is a tail end of the curve of people who achieve long term responses from Yervoy. It is a minority. I for sure believe I could be one of those.
There is also a new drug being tested right now called anti-PD1, it works similar to the IPI, but uses another pathway. Dr. thinks this would be tried after IPI. These immunotherapies generally take months to work.
And don't forget, in our back pocket we have the BRAF inhibitor (Zelboraf). It is a very cool drug, can melt your tumors down in days. The problem is, it works for about a year or less, then the cancer figures out a way around it and comes back in an angry mess. Again, there is a small number of people who have been on it for years. And yes, I would love to be one of those.
What about the TIL transfer in Maryland I was so excited about? Still a possibility, but the more I research the harder it is to find people who have gotten a long term response on this trial. It does seem to help for a while in a majority of the patients. Right now my reasoning is saying, do I want to do that for just a few extra months of life? What if it was a year, would that be worth it? I don't know the answer. It is the ultimate chemo experience (regular chemo plus IL-2) which I am not scared of. But I would need to believe it could lead to a long term response. I am still gathering info on this option. The other problem with a trial is I think you need to be off of all other treatment for 4 weeks usually before starting. I don't know if my cancer is slow enough for this.
Normally these treatments would extend my life months, not years. I know nothing of normal, so I am not going to say that this is the case for me. But what am I supposed to believe at this point? I am so torn between faith and fear and hope and reality. A confusing place.
Cancer, guys, is not a blessing. Maybe if you have it at some early
stage, it changes your life for the better. Maybe if you are old enough
to 'go', it is a great way to say your goodbyes. But I
have not heard people who have lost their loved ones to it, call it
great and thank it. In fact they HATE cancer. They donate money to
wipe it off the face of the earth. They do their best to get the word out. To prevent, screen, support. They would not wish it on anyone. It is such a mean disease.
The blessing of cancer is the perspective it puts on things. Living your life in gratitude is a lovely way to live. Trust me. But what is an eternal perspective going to do for me when I'm already a part of the eternities? Why give this perspective to people who can only use it for X amount of years/months?
As we remember the Titanic this year I couldn't help but ask Josh if this is not a boat slowly, so slowly sinking to it's grave. The terror of knowing you are going down, drawn out over months. He said its a hard thing to watch from the shoreline (Josh just realized this week that I am not going to be around in 20 years. He has had his moments this week).
Who can help me? Only God at this point. But he doesn't pull everyone (no matter how deserving) out of the water. That I know for sure. I know he can. That is not the question.
What about the kids? Don't they deserve a mom and a dad? I didn't even come up with that one!
I'm telling you, it gets ugly over here sometimes. Even Spring seems to mock and torment me this week. How can this be? What is this ugly take on life? I remember when I was first diagnosed I would drive by a group of teens dressed in black with purple hair and nose rings and heavy eye liner and chains. I in my flowery white buttoned up blouse and pink cardigan would say aloud in my car "I get you guys. I am one of you guys! Let's hang out!!" Which is totally silly because these people are probably not angry. They just look the way I feel.
I hate cancer!!
But here is the trick. This hate is not always a bad thing. It gets you mad enough to keep fighting. And I will. Don't take this depressing post to mean that I am out of the game. No way. I will continue to fight. Always. I will throw every ounce of courage and strength I have in the battle.
And I will even come around again and revisit hope. And hope knows no limits.
The thing about these dark days is, they don't last. I just need to get through them and like I said, get over it.
James has almost perfected this piece he played earlier on the blog (recital next month). Raging Storm is the name. I wish I could pound something like this out right about now!