I met with my oncologist for the second time today. I thought I had a handle on the information I’d gotten on my last visit. But all that information, coupled with what I learned today, just led to more questions. One huge ream of paper seems to only answer a few of the questions I still have, and the thousands of words on them are still organizing themselves into facts in my head.
The gist: chemotherapy begins next Thursday, the 26th. Before then, I need an EKG and (more) assorted blood tests, and I need to be fitted with a port, under my skin. Tomorrow, I have a fitting for my prosthesis. Next Tuesday, I have a meeting with the pharmacist in charge of the drugs I’ll be taking. In the next ten days, I’ll be constantly on the move. And somehow, I feel like I have lots more to do here at home before then. Everything feels unsettled. I feel a need to finalize things. Make things right. Make somethingright. But what? What is left to do? I feel disorganized. Adrift.
In addition to my chemotherapy regimen, I will be participating in a clinical trial. My cancer is what is known as HER2-low. For years, trastuzumab has been used to treat HER2 positive patients. The aim of the study is to test the effectiveness of the drug on HER2-low patients. I need the EKG because of this study. There is a slight risk that it could damage my heart. Dr. Nguyen also illustrated my treatment schedule for me in detail, but it was so complicated that I don’t think I fully understood it.
I suspect Ryan more clearly understood everything we were told today. The stacks of paper, the calendar the doctor drew on the exam table. Last week, I became obsessed with the idea of the chemo making me dumb, and I think I’m already there. All these facts; all of the things I still don’t know; it’s squeezing out all of the space usually reserved for words and stuff I used to know.
Ryan, between the two of us, has been the one who’s done his research. He’s organized, prepared. He’s the one who will remind me of the things I need to do this week, I’m afraid. I guess I’ve always needed that from him. Now I’m asking him to be the strong one, too.
I didn’t fully understand before today how vulnerable I’ll be, immunity-wise. I’ll have to go to the hospital if I develop a fever over 100.5. I won’t be able to travel to Comic-Con this summer after all, regardless of how I feel. My doctor feels that at that stage in my treatment, the risk of infection is too great. Ryan expressed the desire to put me in a bubble, and I don’t think that’s so unreasonable.
I will also have to forgo sushi and rare meat and trips to the beach. I may experience nausea. I’ll probably feel weak for a day or two after each treatment. I may not be able to taste food, or have much of an appetite.
This is all temporary. I know this. But It’s just so hard to imagine not being able to revel in the things that are such a huge part of my life.
One of my fantasies is to go to culinary school. Food has been one of my loves, for as long as I can remember. Ryan and I have always talked about it, and now we’re determined. I will go when all of this is finally behind us. For right now, that next stage feels impossibly far away. So It’ll be one of the things I’ll hold onto to get me through.