by Rebecca Zook
‘Twas the night before Christmas … not even remotely. Although, I will be up before dawn in nervous anticipation like a small child, and I do get a couple presents tomorrow. The first present is for the waiting be over; the second is to find out if the cancer is out of my body I suppose that's close enough.
I’m trying to decide how I feel. I've bounced up and down between calm acceptance and fear over the past few days. Sometimes, multiple times a day. My fear is centered not around the actual mastectomy, but the general anesthesia, we don't always get along. I'll be having a long discussion with the anesthesiologist prior to surgery and hoping he or she can mitigate the negative effects it has on me. Lack of control, I'm sure, is playing a huge part in my emotional swings. It's not easy for me to let go and hope for the best without my hands on the reins. Right now, I'm back to calm acceptance. I'm just ready for it to be over.
Earlier today, I went to the hospital for the lymphoscintigraphy, which consisted of shots of a radioactive tracer that felt like wasp stings, and then imaging to track the tracer to the first lymph node. This is what they will remove and test to confirm that the cancer has not spread. I had a special “navigator” with me, a breast cancer survivor herself, to hold my hand during the procedure and who will also see me before the actual surgery.
This is going to sound wrong, but when I checked my messages on Friday and had a call from one of the other support navigators asking me to call back, I actually got angry. Let me try to explain. I am not that worried about the whole breast cancer diagnosis (though the thought of surgery itself does scare me). At least with cancer, you have a firm diagnosis and course of action, and most importantly, a possibility of a cure. Especially if caught early. There are distinct steps to take. There is an end to treatment. I have received informational books (more like novels in some cases), offers of local support groups and now a special support navigator.
All I could think was where was all this support when I was searching for what was wrong with me years ago, when I was lying in the hospital, often alone, dying. Even after. I had to seek out others like me. Scavenge for information. No one handed me books on how to deal with my diagnosis or even a clue where to search for answers. Thank you, Internet! I joked with my infusion center “navigator” when she handed me the first “book” I was to receive that I've been going there for treatment for years and apparently it took getting cancer before I mattered. I was joking at the time, but with each offer of help, it's rubbed in a bit more. I am truly thankful that breast cancer gets the support from the medical community that it does, but I still identify with the Zebra herd - the misunderstood, the chronic, the incurable. People relate to breast cancer. They know someone who is a survivor. People don't relate to hypogammaglobulinemia or the fact that it doesn't get better. We are also survivors.
Every single day for the rest of our lives.
So tomorrow morning will come. I will be at the hospital before daybreak, and this new medical journey will begin in conjunction with the conditions that already exist, and I will continue to survive. That seems to be my superpower. Survival. Can't wait to see what battle the fates have lined up next.