March 2009


I am using my little vials for getting my left fingers functioning again by moving one from an end of wash cloth on tray to the other. This is also helping with swelling and flex.

Also, getting so that I can flex off the tip and insert my own drops is just habitually buiding back the fine motor neuro muscular task. I needed to use my teeth yesterday. The eye lubrication is top priority for maintaining vision. I am happy to be able to move even IV strewn arms to do them myself.

Lube at nights and thru scans and rides through the halls (hat tip to smooth transfers!) worked well otherwise. Folks wrote large with marker when needed.

I’m not so great at remembering names. Everyone’s been aces all over.

Lots of smiles around, including ours.

These inflatable beds are awesome.

Pics in Flickr. Doing well. Weaning down on roids.

Ok, the deal tmrw: we check into pre-op at 7am, then it’s a couple hours to actual surgery start time. My docs are very detail-oriented and they will take extra precautions for intubation as well as accessing the surgery spot. This is a large right meningioma and some of my ABI internal components may need to be handled during the surgery to remove the tumor. My doctors are tremendously experienced and they will be both prepared, as well as ready to handle surprises. Just keep the faith. My team has seen me through a lot over the years. They are very cautious and conservative about preserving functions (above all, life) and anatomical structures. With extras in my head, the surgery could be very long. I’m focused on stability, positives, and confident in the process. And just really hoping my brain doesn’t let
down anyone. ;-)

We’ve had a nice relaxed pace getting things together. Smooth.

I am supremely pleased with my body’s tolerance and the ease of activity around me. (Still a superfan!) My family’s awesome, encouraging and right on the ball.

Everything is so delicately contingent, and going moment to moment is adding up well. Still the realistically cautious optimist, guarding most against a fall is the main thing at this point.

I feel positive and as if the dexamethasone is working with my body. The sleep has to be the main key! ABI sounds are nice too–regulating beats from the wall clock, and then sounds of the house.

Eating and all that good stuff’s going well. Gentle movements are key. Nice that vision is good, no fever, no nausea, and weaknesses are compensated by others. There’s a joy in just feeling and experiencing. Simple. Not exactly rare for me on any day. And the abundance of pillows, jokes, and hugs help too.

I’m focused on healing, compassion, and thinking of all yous. Keep smiling!

so I am taking it level and all in with the plan and unfolding experiences. No worries, please. Positive vibes, prayers, thoughts, and healing energy are all appreciated.

Since last Mon am:
Sent to local ER after calling neuro.

Brain swelling.

Ambulance transport arranged to take me to IU for preadmit.

Admitted to Neuro ICU.


(Insert a whole lot of interesting, yet mutually well-managed experiences and exchanges of info.)

Too wearing to recap. IU rules. I’m in the best hands, and was able to come home to rest for the weekend, with family’s fulltime assistance. So I’ve gotten rest and we have been able to get things together for my admission, get a jump on OT and PT. Moment to moment is working, with many moments of joy and humor. Lots of stories.

Surgery will start early Wednesday morning. Very involved; be patient. I am comfortable with the process of healing. Back to relaxing. You too! Have fun!

And many thanks, always!

Head to toe attack last night about 40 mins after taking evening dose of Keppra. Hedged on whether to visit the ER, somehow made it to bed. Sleep could’ve been worse. Funky head sensations are back and any gains made yesterday are nullified. It’s moment by moment now.

Yesterday, I couldn’t even roll to the edge of my bed, let alone stand by myself. I cringe more for my family’s tension than anything. Some comic relief has been easier to come by–all hail escalating thresholds. I’m happy being alive, breathing, and aware of many varieties of potential–in just being. I’m already reverting back to ways of constant adaptation. No guarantees and highest vigilance against falls, but I am managing. Kind of. We’ll get me in to see my neuro tomorrow. I suspect a few causes, and just hope the answer tomorrow isn’t centered on drugging me up. I don’t think my organs handle heavy loads of meds very well–and actually suspect an overdose of one I’m on now–what got increased by a quarter of its daily dose after my late Jan episode. I try to give things time to even out, because sometimes that’s all we need.

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