3 weeks out…the time warp continues

3 weeks ago almost to the minute I was wheeled out of the post-op holding area and into my room at MD Anderson on the 6th floor where I joined the other thoracic patients residing on two wards.

I remember feeling as if I were observing someone else living my life. Hovering out of my body in close proximity. Connected and yet distinctly separate. I remember how loving and present Brooke was, every ounce and fiber of her being focused on me. The full magnitude of her energy concentrated on me like a tractor beam. I immediately liked the energy of my night nurse. I felt a sense of relief that I had someone who was gentle and kind looking over me. And even through the haze of the anesthesia I felt at ease that I would be in good hands when my loving Brooke went home for the evening. The nurses at MD Anderson were amazing. Maybe I just got lucky with the four primary nurses assigned to me, but I doubt it. Based on what I have observed at MD Anderson it is a trait that runs throughout the organization. And the nurses are the cornerstone of that care.

It was late. Much later than we had anticipated or planned for. Brooke is not a person who does well after about 9 pm in the evening. You would not have known it that night. She lit up the room, and probably the whole ward, with her energy, kindness, and smile. I distinctly recall that the nurse and Brooke insisted that I get up and walk the ward. Within hours of a major thoracic surgery they had me up and moving. It was quite a spectacle. Walking along attached to my “totem pole” of IV’s, pain med dispenser, catheter, chest tube and collection unit…not to mention my stylish gown flapping in the breeze. I felt as if I were going to topple over at any moment. They told me later that the nurse trailed me with a rolling chair in case I collapsed. My head was swimming with narcotics, and the headaches and dizziness were intense.

That first night was awful. Constantly being woken up by beeping respiratory monitors. When I fell asleep my respiratory rate fell to concerning levels. And then the constant poking, prodding, checking, etc. Sleep was low on the priority! I started to experience a sense of time moving at an odd flux, fast and slow at the same time. I was able to get discharged relatively quickly, 4 days, yet it felt like 8.

3 weeks out I find that sense of time warp continues. Some times the days seem to drag on, and then even within the same day I wonder where the time went. I have not done much. I ventured out of the house for the second time today. And I over extended myself. Sometimes I think I am feeling great, and then 20 minutes or an hour later I am exhausted and moving across the room or walking upstairs seems like a big effort.

The headaches are really getting to me. Debilitating, they sap my energy to do much at all. They seem to function as a barometer, receding when I am feeling stronger and surging without warning when I push too hard.

I am tired of being tired. I told Brooke it often feels as if a heavy wet blanket has been draped over me. I keep trying to focus on patience, sometimes I feel settled. Often I feel I have little patience for patience! I can’t get over this weird sense I have around time. I have what seems to be a cloudiness and fog lingering in my head, particularly my frontal cortex where I feel it most. I have an urge to be “making progress, taking action, moving forward” except I feel blank when I try to discern what actions I want to take. Perhaps it is a form of anxiety? In reality I feel just as strongly that I don’t want to take any action at all. I wake each day motivated to tick off some items on my “to do” list. Yet I can’t seem to pull the list together. Kinda odd for someone who has been making those lists daily for the last 15 years. And then the day seems to melt away, and by evening I am exhausted and hoping the headaches don’t come back. Someone asked if it was depression? I don’t think so, I am not depressed, sad, or withdrawn. I feel grateful, I enjoy the beauty of the day, and underlying my physical malaise I feel a twinge of excitement for some unknown adventure awaiting me.

The people I have seen or spoken to very kindly say I look or sound great. I appreciate their support. Yet it is weird, it makes it hard when a bit later I don’t feel great. I have to be careful not to judge myself, question the validity of how I am actually feeling. Chastise myself because I know there are many who are facing much harder challenges than me. Then I remember to give myself a break, my experience is just that…my experience. There is no specific standard  I have to meet. I have always been my own worst critic.

“This is a time for patience and careful attention to inner truth. Attempts to force a change, rather than allowing it to come naturally, will only cause misfortune. If one remains balanced, modest, and independent, good fortune will come to hand.”

– I-Ching

 

 

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