Where I'm At

Photo by Annie Gerber Photography

For the first time in a long time, I feel like I'm in a good place. I am being honest in saying that. But I'm also going to be honest in saying that I went through A LOT to be able to get to this point.

In the last several months, I've been overwhelmed with emotions I felt incapable of handling. In the moment I struggled to process my feelings, and was dumbfounded at the thought of sharing them publicly. I started writing for myself which is something I had stopped doing. At the time, each journal entry seemed so harsh and miserable. However; that was my reality. Looking back I realize there would have been nothing wrong in sharing that.

So, I will share some of them right now: I dread taking my pills every night; I put it off for hours. I resent getting infusions at clinic. For months I cried myself to sleep after finally getting my thoughts to slow down. When I see pictures of friends swimming or at the lake, I get jealous. I go to bed attached to tubes every other night that make it impossible to get a good nights sleep. I feel useless on days that I have no energy to help. I feel so alone some nights. In my right chest I have a Broviac and a port in my left; the lines make me feel abused and fragile some days (not to mention how difficult it is accessorizing them).

I'm sharing these with you not to make you feel sorry for me. I am sharing them with you to tell you that I struggle. Days rarely come easy. I fight with my emotions constantly. I've had to learn to embrace them in order to overcome them. I finally realized that it's okay to be vulnerable, raw, and honest. But most importantly I'm sharing this with you because I finally feel strong enough to say I made it through all of them.

I started a new treatment at Mayo Clinic to help my Chronic Graft vs. Host Disease. A quick biology refresher, GVHD is a side effect of the transplant. Basically it means Ryan(Graft) and I(host) are still butting heads inside my body. (Really, who is surprised at that! We are brother and sister; isn't that what we are supposed to do?) I was sent to Mayo Clinic to receive treatment called Extracorporeal Photopherecis (ECP). ECP is a process in which my blood is taken out in 4-6 cycles. In each cycle my blood is filtered, a portion is set aside, and the remaining blood is replaced. After the last cycle they take the portion of cells they had set aside, mix it with a medication called Psoralen, filter it under UV lights, and return it to mu body. The combination of the Psoralen and the UV light triggers something in my cells to teach my lymphocytes to recognize good cells vs. bad cells. It is a process that even doctors understand completely, but it has promising success rates. It is an eighteen month treatment. For the first month, I went twice a week, every week. For the next five months I will go two days a week, every other week. A port (permanent IV) was placed because the flow of my Broviac was not strong enough. Each treatment takes about four hours. I visit Phoenix Children's every other week for simple check up's and the occasional infusion depending on my counts.

Now for the good stuff! You probably won't believe me when I tell you all that I have gotten to do in these past few months! Three trips, two concerts, and lots of hanging with friends. For the first time, I have a normal hair cut, I got my GED, I enrolled in college, and I was the ambassador for a marrow drive at PCH and Mayo. I go into grocery stores (as long as they aren't overcrowded), I eat out (probably more than I'm supposed to, sorry Doctor Douglas), and I actually have energy. 

Somehow I had this illusion that when I was "healthy" again everything would go back to normal. My hair would grow back, my Broviac would be gone, and it would be like I never left. Boy, was I wrong! However; I am starting to get my life back, it's not the one I left behind two years ago, it's better. It fits who I am right now, in this moment. And it feels absolutely incredible.

Finally I want to finish with an experience I had the other day. It  was a moment of clarity for me and I hope it will help you understand where I am at as well. I was trying to escape a dust storm by wearing a mask and hiding in the bathroom; I was frustrated and worried. Someone asked me, "So is this how you are supposed to do it when you have a transplant?". My answer was the only one I could think of, "I don't know. I've never done this before. I'm doing the best I can." And that is exactly where I am at right now, doing the best I can in each moment. Living, not scared of what might happen, but excited at the prospect of what will.