I’ve been looking back through my journal, deciding what I want to share and what I still want to hold close, still just for me right now.
This entry is from the night before I thought I was starting Trikafta, Jan 28, 2020. Turns out I didn’t start for two more days due to a body that wasn’t doing so great said planned morning.
Alas, here’s the entry from what I thought at the time was my “Trikafta Eve”.
Jan 28, 2020
I’m sitting here in my bedroom, looking at a box of Trikafta across from me on my night stand.
It is my first box. The co-pay is $0. That is unreal to me. I do not yet know if that will be my monthly co-pay this year or if that will change with the months and as I move in and out of different levels of coverage. I was told by the pharmacist that the co-pay would be anywhere from $0-4,000. The fact that it is currently is $0 is well, pretty incredible. I also have some guilt honestly as I know there are those who do not have access to this drug or can’t afford it. I know my guilt is not useful to them, but it’s a part of what’s here so acknowledging.
I also have Missy and Pete’s picture in view. I got a little note from Sandy representing “Jiffy Jeff” which meant so much. I whisper the names of all my friends who are no longer alive so that I might also offer some part of “this” to them.
It’s been such a wild ride, this most recent unexpected road to Trikafta. The last number of weeks especially.
Hard news- 2 MAC cultures emerge, almost a full year (will be a full year in Feb) into treatment.
With the light at the end of the tunnel for this treatment, that would normally be incredibly hard news to digest.
BUT having Trikafta in the picture- adding it to this cocktail- I have hope.
I don’t quite know what this combo will mean for my MAC treatment or duration of treatment.
I have no idea what this cocktail will do in my body. I need, do I need, to hold a certain outcome? Maybe I should listen to a Dr. Joe Dispenza video.
I had a feeling today that this new drug is a new opportunity, a new “permission slip”, to really jump to create a new life with new possibility.
I’ve had so many feelings throughout this whole thing! And now it’s almost here!
I can’t believe it’s here!
I really do wish that I could be free of MAC treatment and enter Trikafta without that part.
I wish I could have just that experience and that MAC wasn’t a factor.
That said, I can choose gratitude. I can just be grateful for this medication and this opportunity.
Change my mind, change my life.
Change my mind, change my life.
My mom will be coming to be with me because, as life would have it, Rick will be away for the start of Trikafta. This was a hard choice for us, and given the circumstances, especially with the new cultures, I think it was the “right” one.
This is also a time of promise for my mom too. So it is special that she will be here for a part of the beginning.
What do I want to do- around the entrance to this time in my life?
How do I want to honor it?
Maybe tomorrow night I dive.
Maybe I light candles.
Maybe I do a cleansing ritual in the morning.
Maybe I hoop in the morning.
Maybe I hold prayer and ritual around the first pill.
Maybe I spend some intentional time with God.
Maybe I meditate before I take the first pill, my babies Bahn and Jaz by my side. Maybe I tell them their momma is starting a new life.
Maybe I have some time of thanks.
I think I will move the pill pack to my alter now.
Maybe I move Ganeshan to the box there and just let all of this marinate.
Maybe I dance.
I think I dance.
Maybe I take some moments and embrace “Trikafta Power” with all my cells.
Maybe I smile in all my organs, I tell my mucous membranes, “Something’s coming”.
“Something’s coming that you’ve been waiting 40 years for. Go ahead and drink it in, do what you need to. Our future is waiting on the other side.” .. Or just, “I love you. I honor you. Let’s take in all we can together.”
I love you.
I love you.
I love you.