So -- here we are. December 4, 2014. Well past Day365. I'd love to say, that the journey with melanoma is done and I'm NED and have been for MONTHS --- but I'm not and haven't been NED, really at all -- unless you count my brief time post toe amputation. I guess, at my first six month scan, I was considered cancer-free....but all of that changed at the 1 year mark. Interferon was rough. There is no sugar-coating that one. In many way, and thankfully, I didn't completely realize how bad it was until it was out of my system. Is it possible to forget what it feels like to "feel like yourself" because it has been so long? That was life on Interferon. I wasn't myself, but didn't quite know it. I went through the motions and I functioned -- but I slept a lot. I also lost the ability to read or focus on a book. Stealing reading from me is the biggest thing that I recall from the Interferon days.
Anyway -- it bought us some time -- at least, that is what I choose to believe. So here we are - 5 months after my last scan that showed melanoma in my brain, my lungs and quite recently, my liver. This damn thing really wants to kill me. I've done gamma knife radiosurgery, four infusions of ipilimumab and numerous shots of leukine. Scans will show next week whether or not I've turned the corner on this sucker. If not, I'll be starting PD-1. Merry Christmas.
This is a mind-boggling experience -- I feel better than I've felt in years. Seriously. But - I know that this insidious monster is creeping around my body looking for new places to take hold. I have a lump on my back that we are waiting for biopsy results. A random lump. Is that a new tumor home? It keeps trying to grow in my lungs -- and, with every twinge of a headache or a stupid twist of words, I wonder if it is taking hold of my brain again. I look at my girls and just want to figure out what the silver bullet is that will allow me to raise them, see them as adults, become a grandma -- grow old with Chris. Some days, it doesn't seem like much to ask -- most days, it feels like I am asking for a miracle. I guess I am.
On the flip side of this -- I was searching for an uncomplicated life. Take cancer out of the mix -- and we are living and appreciating a life that is calmer, simpler, focused on time together as a family. I couldn't ask for a bigger gift than that.
Chris has taken to putting fires in the fireplace each night. I keep thinking that he is doing it to set a calm stage within the house....he says he is doing it because the house is cold. I just like watching the fire. It can be a mean, destructive force -- but controlled, it is incredibly peaceful.
Just learned that our Ipilimumab infusions, had we not had insurance, would have cost $86M each. EACH. After four infusions, that'd be a house. A HOUSE. I wonder what the PD-1 is going to run. I can't even imagine at this point.
I need to get back to focusing on what I am thankful for.... today, I am thankful that Chris has a job that provides an option for good insurance. I am thankful for the Advent season - and how we are spending time as a family talking about what Advent means. I am thankful that we can light fires in the fireplace. I am thankful that our girls love to play games - as it gives us a great way to spend time together as a family. I am thankful for our little dog that snores like a banshee. I am thankful that I have time to volunteer over at the girls' school (I can laminate like a boss). I am thankful for feeling good. Today, I feel good, I feel like myself, and I have hope.
