Tuesday, March 17, 2009

Part of the price of CLL

Robert is in the hospital starting his OFAR treatments to clean up his nodes and marrow before transplant.

He is missing his young family already.

I am extending my trip to NYC from 2 days to almost a week to fit the schedule of two CLL doctors whose opinions may and may not make a difference in what happens next. It is not like buying an album. (Do they still sell albums? Do my kids even know what an album is? ) You don't know what you are getting until you pay for it, and my insurance  pays for nothing out of state.

I am already missing my simple raw vegan food and my dogs and cat.

Since the transplant, this is the first time I have been more than a few hours from home. Half my bag is "what if" meds.

But I do get to see my beautiful and smart daughter and Samson,the wondercat. Of course the thrills of walking the streets of Manhattan, and the museums and Central Park never wane.

I will lecture to several hundred doctors on Saturday  about migraines My chance to catch up with old friends in the medical education business. I missed all last season. It would have been hard to lecture wearing a N95 mask, though the bald look was pretty hip. I love to teach, and I might see if I can segue from CLL and transplant to migraine in my introduction.

Yet I remain gloomy and hyper-vigilant about the trip. I have a strange foreboding. Maybe it is because I feel my health is at a tipping point, and travel is stress I can't easily tolerate. Maybe it is because of the shift of schedule with Dr. Rai throwing me off balance and pushing me to question what I  am looking for and what price am I willing to pay for my consultations. Maybe it is because I won't be able to visit Robert in hospital.

Maybe I am growing too comfortable at home. I am sure that I will be much much better when I have boarded the plane, and will be great when I see the Manhattan skyline again.



Blogger Mikha'el said...

I have found much solace in being 30,000 feet up and having the time to reflect, read and turn on the creative mind. Make the best of the trip, enjoy the NY skyline and the great food to be found and best of travels.

March 18, 2009 at 7:55 AM  
Blogger Alison said...

Stay calm, love your daughter, (and the cat); I think you're great and very brave. You never know what may turn up - look at all you've done already.

I got a new seat on wheelchair today - talk about a comedy. I'm perched, none too comfortably, on kitchen chair, wheelchair taken outside to the van to be fixed, I become very frustrated just having to sit there. Oh well, it all worked out in the end. Don't know how! Peace, Brian.

March 18, 2009 at 9:17 PM  

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