Poetic License

During periods of change in my life, I tend to dream a lot. Dreams are a way for my brain to process life or to reveal things of which I’m not consciously aware. I never know which it is, though I can often figure it out after a time. I should write down my dreams immediately upon waking, but there are animals to be fed (which they let me know very vocally). A full day of work is usually on tap, as well. My latest dreams were about the oncology office.

Why now, when I’ve passed the 2nd anniversary of my diagnosis, am I dreaming about the oncology office? In the dream, I felt out of place. I was surrounded by people in various stages of treatment, and I was listening to the nurse telling one of the patients that if they had a certain protocol, they could expect to run a fever first thing in the morning but that it would pass. (To my knowledge, there is no such thing, but it was dreamland.) So I found myself telling the nurse that I never ran fevers with the protocol and that she shouldn’t tell people that. I couldn’t get her to hear me. My feeling of being out of place grew.

Now, one could argue that this “out of place” feeling means I’m in the clear. Yes, that could be the case. But I am more of the opinion that I’m not being heard. No one is listening. It isn’t lost on me that I was arguing that I didn’t have those typical side effects. In my family, all of us siblings have strange medical things. We have atypical reactions to medications (those rare, rare side effects), odd physical challenges that don’t fit neatly within the parameters of science, and things like that in common that amount to a cluster within a family. My older brother has often said that someone could make their career by studying our DNA to figure out what has gone so wrong. He became disabled before age 60. I understand that far better now that I’m staring at 60 and feel just so awful most of the time.

Last Saturday I had 13 vials of blood drawn for a whole plethora of potential conditions. Though I told my neuro-ophthalmologist that I had been tested for most of those conditions, he ran the tests anyway. Something is interrupting the nerve pathway for my right eye. He looked for Lyme, every autoimmune condition known to man, even syphilis! Most of the tests came back negative. Only the inflammation markers were positive. My PCP mentioned paraneoplastic syndromes – something that could indicate cancers too small to detect with the scans right now. That would be just my luck, eh? I’m not focusing on that, but he wants me to have a complete neurological workup, just to be sure.

Oh, and he had me do a short quiz to see if I were depressed. Oy vey, that really pissed me off, and I told him so. I do have a history of clinical depression, but I haven’t had a problem with that since before cancer. In fact, most days I’m looking forward to what’s next in my life. I’m making plans. When I was depressed, I never made plans for my life – I just thought about ending it so the pain would stop. These days, the sun shines a little brighter, and the laughter comes easily. I enjoy time with my friends when I can, and I go for walks with my dog. I know depression and this isn’t it!

Some days…

Would it shock you if I said I believe there is a cancer process happening in my body and that the doctors can’t see it yet? That the paraneoplastic syndrome mention was the thing that made the most sense to me? But I’m not living my life as though it’s happening.

Still, I rise. I get up. I work. I live my life. In many ways, I just don’t want to know if there is a process going on. Maybe this is the calm before the storm. Maybe it’s God giving me a break. I can tell you I don’t ever want to go through cancer treatment again, but I will if I must. It would be really nice to figure out the problem with my eye, though, and get it back on track, so to speak. Anything with my eyes just wrecks my day.

All I know is this – I’m tired all the time. ALL the time. My son is here this week, and I want to spend every moment with him. I’ve had to take naps, though. Naps on my lunch break, and sometimes naps after work. The fatigue is robbing me of time with my boy. No matter how hard I fight it, it gets me.

The other night we had dinner and sat down for a game of Scrabble (we ended up playing two). He looked over at me at one point and said, “You look like you’re just done.” I shrugged.

Along with the fatigue, I go paler than usual. My shoulders begin to ache from trying to hold myself upright. My mind doesn’t want to rest, but my body needs it. My body needs far more rest these days than I admit, even to myself. If I didn’t begin to ache from lying in the bed, I could probably sleep 16 hours a day. This is why my doctor thought “depression.” I feel as though I have a sleeping sickness. But my brain looked fine on the MRI. My blood is mostly fine.

Next month, I’ll go to the woods for my 60th, and I will spend time on short hikes with Adele. I will probably do a fair bit of sleeping, too. The sound of the waterfalls will lull me into a drowse. I haven’t decided if I will take my laptop or not. I think I might just take a blank book and a pen to jot down my thoughts and observations of Oakland, MD. I’m hoping Adele enjoys the trip, because I’m so happy she’ll be with me. She is the best dog.

And those dreams? Looking back at life with my ex-husband, standing in the oncology office, or watching a hurricane on the horizon? Who knows. I have my ideas, but I’ll hold those for now. What I do know is that I want to live as though my time were short, because we never know, do we?

Namaste, Jude