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February 26, 2010

Day 9 & 10 & 11 - is that food?

This is starting sooner than I expected, but of course not a total surprise. 8th treatment today (February 26th) and the sides of my tongue feel a bit numb and food is taking on a generic flavor. Even ice cream (sigh) tastes like chicken.

At the risk of seeming that I want to be isolated (I don't) I want to also report that I notice I'm getting a bit cranky - short tempered, irritable, not very nice - especially when I am getting asked a barrage of questions like "how do you feel?" and "what can I do?" from very well meaning people (friends, family). [Claire just asked, "From a caregiver perspective, is grumpiness cumulative?" Funny]

This is quite the lonely road I'm discovering.

I have no idea what to say to people when I'm asked these questions and I'm tried of giving the same report over and over: It sucks, I don't know what I need, I don't know how you can help me. Everything is happening way too fast and the loss of control of all the things I once had mastery over is devastating.

It is good to talk about this and other joyous topics with the friends who are giving me a lift to the rad treatments. Honestly I think I could drive myself sometimes, but knowing that I'll have someone there means a lot even though I may not feel like talking about "how" I feel. I get a great deal of comfort from the humor that typically joins us for some stretch of the 10 mile trip to the RPCC.

I don't feel depressed, but it is likely I am. I think this must be the territory of depression. My brother called today and said that it is like I'm climbing Mt Everest and he wanted me to know that he is there right with me. That is a great visual and wonderful sentiment which I appreciate very much, but it is ultimately untrue. In his heart he is with me, in reality this journey passes in extreme loneliness.

This is, for me anyway, rather like a marathon, my first. Each night dealing with dry mouth, each day of difficult treatments, each liter of water, each bite of food - these are my milestones. I see that my preparation for the race has been when I have sucked it up in the past - school, work, life - just to get through a bad day. I am drawing on those experiences now and making good use of them. Tonight was a case in point.

I'm strapped to the table under the mask (not yet use to the claustrophobic feeling) focusing on my breath, counting the radiation passes, counting with the music (Traveling Wilbury's tonight - "I'm so tired of being lonely . . ") when I get this intense itch on my right shin.

Now, if I move, I risk having to skip the treatment because I will get out of alignment. So I go right into the itch, feel every microscopic nerve cell screaming for attention, knowing there is no way I am going to jeopardize tonight's treatment for a little itch. There was a lot of power in that and in a practical kind of way very meditative. Maybe a little strange too.

Big news: Grandma Teresa arrives tomorrow! We are all very grateful and excited to have her here to help us with the marathon. It is likely she is less excited than us, but she reports that she is "well up for it." In my heart I feel for her and - she will kill me when she finds I've written this - at her age (there, I said it) the sacrifice she is making for us is significant on many levels. I truly, truly appreciate her help.

A big shout out to SH for helping the kids at drop off today! w00t And to CR for the drive tonight and the 2000 calorie value meal.

Posted by Michael at February 26, 2010 10:55 PM