Sunday, January 21, 2007

Weariness Beyond Measure

So, despite my hopes to blog on an every other day basis, the sheer exhaustion of the past weeks (months?) is making it impossible. I cannot drag myself downstairs at night, all I want to do is sleep.

The last entry was a bit more upbeat: spoiler alert! This one is going to sound like a lot of complaints. But in fact, having no energy for me is devastating. I have no expectation of being my "previous" high energy self, but I would like to be able to shower, dress, clean the cat box and fix breakfast without thinking that I will need a two hour nap.

The docs ordered iron studies this past week. What basically showed in the labs was that I am not absorbing any of the supplements (natural or otherwise) that I have been forcing down for the past nearly ten months or more. Kale, broccoli, pills by the hundreds, all for naught.

So, how to describe this feeling? I sleep at least nine hours at night, not always straight through (I have been plagued with sweats and other sleep disturbances the past two weeks), and nap when I can. I haven't worked a full week since December. I wake up thinking I am good, go downstairs, scoop the box, then take my "warm" shower, towel dry my hair, and go upstairs to attempt getting dressed. Sometimes a quick e-mail check. All this is between 6 and 7 AM. Then, I get Sofie up (imagine a teenager in a tinier body, she is hard to awaken). We work on choosing her clothing, these days, not so successfully, she is getting more and more picky and the weather is colder, so she gets pissed when I tell her she needs long sleeves not short. My daughter mostly runs warm, I run ice, these days.

By 7:30 or so, all of us should be dressed and the eating of breakfast commences. Somewhere in there I pack up the lunchbox. I usually plot the lunch in the shower, so it is pretty rote.

We make sure that everything is packed into the backpack and then, after Ms. Sofie dawdles over her food, I attempt the dread hair brushing.

Sofie had wanted to grow her hair long, and we preceeded in that direction all summer, despite the mess that happens with swimming (pool, lake, you name it, it craps out the hair). But last week, after her shrieks of "you are torturing me", I had it, and we got it cut to last year's bob, with bangs again. Yes, bangs, with all their upkeep, but I could not do it any more. It still tangles, but it is better.

So, back to the weariness. Last weekend, my friend Barbara came down from Asheville late Friday night and stayed with us until mid-afternoon on Sunday. I don't know how I would have managed if she had not. I am so tired in the evenings (evenings being defined as any time near dinner these days) that I did not have the energy to bathe Sofie or get her to bed. Barbara cooked, cleaned up after us and interacted with Sofie. I slept, a lot. I love her for this, and I hate that it is needed.

Jamie has been, despite being in her fourth cycle of six chemos, a steady presence. She has picked up Sofie some afternoons, she has hung out with us/her, and generally just been a solid person to count on. And all the while, she is dealing with nausea 24/7 two weeks out of three.

Other friends (Jamie B, mother of almost five year old twins, Tracey and Sharon, the Ingrahms, Susan and Joy, Kim, Betty and Delma) so many others have been there and offered help. I am having to say yes a lot these days, yes, I need help, yes, food deliveries will be great, etc.

Two women, Ruth and Rose, came over Thursday night with a feast for Jamie and I. Wonderful soup, deviled eggs and a great chicken salad. And more. They called as they were leaving their house, I had no notice, so working out space in the fridge was a challenge, but it worked out. And I have been eating off that feast all weekend. My appetite continues to be iffy. I feel hungry and I know I should eat protein, at least, so I have been having soups and nibbling on the chicken salad with crackers. Voracious, no, but the food is wonderful and the best part is not having to fix it.

Other friends are home, cooking as I write this, and will bring things tonight. I remember the first round of cancer treatments, when friends offered food and it really wasn't necessary. Not only could I cook, I had a huge appetite and it was not a problem to be self-sufficient. But now, with energy at an all time low, I am a willing receiver of the bounty of friends.

On Friday last week, I had a port-a cath put in. My veins, once so fabulous that it was hard to miss a stick, are now quite scarred from being used on a weekly basis. So the port-a cath goes under my skin, kind of on the right side of my body, on my upper chest. I figure, what is another scar at this point? The surgical procedure was done Friday morning under light sedation, I was awake and could feel the pressure of what they were doing, but little pain. Now my chest feels a lot like someone walked on it, but that should be gone within the week. I have a dressing on my neck (small scar to insert tube) and on my chest. I can live with that.

They also gave me two units of blood. I expected to wake up on Saturday feeling a bit more like myself, but instead, after hours of rest (home by 5:30, pretty much slept until the next morning with brief break to eat soup), but no. Today perhaps a little better, but nothing like "normal". Will I ever know that normal again?

Sometimes, this dragging around, this incredible weariness with no end in sight, brings me to tears. Of frustration, more than anything. I don't feel like I am being a good mom, I get short with Sofie and now, because one time I said that the treatments were making me tired and crabby, now she says "I sure hope that medicine works fast so I don't have a crabby mom so much". Ouch!! But she told me that she loved me anyway. We still argue, but I am trying to do that less. If I die sooners than later, I don't want her memories of me to be ones of arguing over matching her socks. They are her feet, anyway.

It is funny, how I think (or don't think) about my appearance now. Mostly I go for comfort and ease of dressing. So work is kind of a simple uniform of pants, (grey/brown/black/light grey) and a cashmere sweater (for the warmth) and earrings. I try to match the socks and if I get that all done, I call it a day.

I hope that sometime in the future I will care about clothes again, at least a little. My hair is still salt and peppery, but people seem to like it. I plan for now to keep it kinda short, again, less to worry about.

I still want manicures, my concession to grooming, but this weekend, it was too complicated to even try that, so I will figure it out later.

Every bit of energy now is precious. Keep sending yours, maybe if the iron supplements don't work, the energy sent by friends will.

My gratitude and love to all of you who write, call and keep me in your thoughts.

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