I was not looking forward to today’s infusion, but again, I am holding on to hope so it was worth it. Today’s experience was slightly different. I felt more aware of my surroundings than in my prior infusions but the last 10 minutes or so were similar to before. I cried and felt isolated and paralyzed. I could see the people and surroundings around me but I felt completely separate. That terrified me. Luckily, the nurse was right there for me. Even as the infusion ended and my IV was taken out, I continued to cry, feeling nervous and scared.
As I came back to myself and had something to eat, I felt more stable as my head became clearer. My husband and I then met with the doctor. We discussed my progress and the necessary med changes. He gave us some options and I will be trying a medication class I have not tried before. I left the meeting feeling a spark of hope. I am eager for this change but it involves slowly tapering off of one of my medications and then waiting 2 weeks before starting the new one. The next few weeks may be difficult. It is only now, in this moment, that I see that I will get through this transition…there is no other choice. My therapist and my doctors at Yale are right there with me and even though I still can’t feel it, I see them. Their experience and expertise have guided me thus far and I trust them implicitly. Most importantly, my husband is right there beside me and I know I am very lucky.
I will have one more infusion on Tuesday and then the medication changes will continue. I am nervous about the next few weeks, but since I have already come this far, I can make it through this.