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Day 59 – Alice in Wonderland

You heard me, I feel like Alice in Wonderland. Since my clinic visit I haven’t been quite right to say the least, not feeling bad just wacky. The best way I can describe it is Alice in Wonderland. You may remember me mentioning my new found head sensations, actually I have been having them throughout the first three Games but this week they have advanced to a new level. My battery was pretty run down after a few big days early in the week so that combined with the drugs has contributed to these new feelings, at least that’s what Doctor K thinks. To give you an idea of how the process works I start with shaky hands, that is my first warn sign of things to come. I usually discover this while trying to write a note performing some nominal task with my hands, typing is also a challenge but much easier than writing. Once the hands go the head follows suit, it is as if my head is lifting away from my body and everything within my sight appears to be very far away. If I am looking down, at a table or the floor it feels as though I’m on the ceiling and I’m talking about a ceiling that is 50 feet high, like a gym. However if I’m looking across a room it is as if the room is 20 times it’s actual size, everything appears much farther away than it actually is and as I reach for things I feel like Mr. Gadget with super long arms. Again this is not a painful experience, sometimes it is a little discomforting but unique and wild are the words that come to mind first. From the “wonderland” feeling I progress to the spins, which are often uncomfortable. We have all experienced the spins from time to time, well these spins are similar. The room spins around me and from time to time it will sway from side to side like a teeter-totter. So far the only ways I have managed to combat these sensations is to lie down and close my eyes, which works sometimes or else I take a nap. Needless to say I have been relaxing for the past few days, maybe a little too much as last night was relatively sleepless, but that is all I can do. I mentioned that my energy would come and go with no rhyme or reason and the last few days have certainly reinforced that fact. I spoke with my Doc and Nurse today and they are not overly concerned as my drugs, specifically Prednisone and Dilantin, can have many side effects and do “unique and wild” things to your head and balance. Thankfully things are going well and my Prednisone dose is declining daily, and starting tomorrow it will be low enough for me to stop the Dilantin!

While the past few days have been interesting they have also provided essential knowledge with respect to my limitations and how I can avoid or help control these new “wonderland” sensations. It certainly isn’t the most enjoyable time but I do have the ability to influence how I feel and I am fortunate to have this knowledge as I feel I would be quite uncomfortable experiencing these sensations without any knowledge of why or methods to influence them. With a little luck tomorrow will see them reduced and hopefully fade for good as I stop the Dilantin.

In other news I had my Day 60 dental check up today and everything is fine. No GVHD in my mouth, which is a possibility but not a high one. All else is flowing smoothly, no word on my bone marrow results but in conversation with Doctor K. today he is not concerned at all as my blood work is fine. It appears to be more of a formality than anything, which is positive.

Ironically through all of my head feelings I have been having some of the best thought processes I’ve had in a while. Lots of ideas flowing with respect to future plans so I have been at my computer and journal more lately than in a long time. You will all be party to these thoughts at some point but they remain as “work in progress” for now. It is nice to have my brain working this way again even if it does drift off to “wonderland” fairly frequently. That’s all from here, clinic is only 4 days away and I’ll be in touch before or immediately after then. Send questions and thoughts if you have ‘em or else you’ll hear from me soon.
Have a good one,

Geoff
#4

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