Sitting here shaking my head at people who can’t see me and talking to the computer…not a good sign. Of course, after what I went through, I guess I’ll excuse my behavior. Let me back up a bit. I realized earlier in the week that it was time for my maintenance phlebotomy and I had forgotten to schedule it. I called my “emergency” hotline number. This is a number that was given to me ONLY after 14 years of seeing the same nurse. She knows I will not abuse it. It connects me directly to her phone in one of the busiest Oncology/Hematology places ever. Someone else answered yesterday, but luckily my fave nurse was there to save the day. So I got scheduled immediately without a wait.
As I entered the treatment area today, several patients were already dozing in the arm chairs. They are there for a much longer treatment than mine. They have liquid hope in a bag attached to them, and I always say a silent prayer for them all when I arrive. Some of you know that I was diagnosed with Hereditary Hemochromatosis and Porphyria Cutanea Tarda not long after I lost my grandmother to cancer. Imagine picking a scab off the same wound all the time and thinking that next time it won’t hurt. Yeah, it feels like that.
Today there was an elderly lady in the chair across from me wrapped up in a cocoon of the fluffiest blanket I had ever seen. I could only just make out the top of her head and eyes. My nurse came over and squeezed my arm so tight with the blood pressure cuff it left a mark, but I bruise easily anyway. I couldn’t tell if the caterpillar lady was watching this, but I felt like she was. After the biggest needle ever made was stuck in my arm, my pint of blood filled up in under 8 minutes. I bled through the first bandage and the nurse had to come back. After that, I asked for my usual ginger-ale and promised to sit still. No IV needed. Approximately one minute after that I felt sweat break out on my forehead. Oh crap. The nurse had retreated to her station and was chatting. I felt sick in my stomach and knew what was about to happen. I couldn’t get my feet up and my voice stopped working. Hot. Damn it, I am going to faint. I cough loudly and the nurse asks if I am okay. I rasp out no just in time for the other nurse to fly over and say “I can see it in her eyes. Get your feet up!” I am trying to lady. The chair is not working. Flip. They are both there. I manage to squeak out that I need that IV now. I fervently wished I could cool off and avoid passing out. The next thing I know she is pressing the blood pressure cuff back on me saying well, I guess I’ll have to change my report. I said no adverse reactions. I manage a “sorry” and we grin. I really do love my nurse.
When I manage to get okay, she tells me the doc will be over after a while with her new PA and med student. Great. Show and tell with the weird disease lady. I always love this part. Sigh. The tiny lady in the cocoon says something like “Wish you could change places with someone, eh?” I manage a smile and reply “Actually, I am fine. I have to come here for the rest of my life, so it’s okay.” She sits up a little bit more. I get the usual questions and I explain as best I can about how iron tried to kill me 14 years ago right before my wedding. Just as our conversation starts to get interesting (me reassuring her she will be fine after finding out she is new to chemo), my posse rounds the corner, and I don’t mean that in a good way. I always feel like an uncommon specimen when my doctor looks at me. I sigh inwardly again for the thousandth time as she launches into my story (as if I didn’t know it).
The nice elderly lady has emerged from her cocoon as her friendly husband arrives as well to drive her home. He smiles pleasantly. She isn’t as old as I thought and has dressed rather smartly for her visit today. My heart lurches and I want her to get well. She is wearing a nice hat that matches her gold and black ensemble. What a beautiful butterfly she makes. She will be okay. I know it. At last, my own hero arrives to drive me home. What a way to start off Mother’s Day weekend, but at least I’m here.
“The most important thing in illness is never to lose heart.” ~Nikolai Lenin