Ultrasound of my heart from yesterday.
As I’ve been learning through most of this illness, whatever complication can be simply described is usually not quite as simple as it would seem. Same thing for side-effects. Come to think of it, describing these outcomes in only the most simplest of ways is common-place and probably easiest to do because the manifestations of variations on what can happen are probably so numerous – they’re certainly unpredictable – that to get specific about anyone one thing before transplant could take an entire day’s lecture in and of itself, unlike the kindly 4 hour lecture we got before this whole process started.
Good morning! I finally decided to write something for the blog.
It has been an incredibly hectic time. But I am astounded that I now have someone else’s immune system in me. Of course my own immune system and nouveau-immune systems are not loving each other and I have had complications – nothing life-threatening, but serious. This is called Graft vs Host Disease and actually it’s not a bad thing to happen as it helps to establish my new immune system and help the body adjust. I’ve been fortunate that I haven’t had the most serious of complications, but complications just the same that have made the past several weeks somewhat unpleasant.
Not important to get into the details here, but in general, my GVHD has complicated my diet, my skin, body strength and I’ve had some fevers and bacterial growth. All of which are being handled and with the exception of bacterial issue, the issues are clearing up nicely (if slowly).
Mom has been doing a stellar job keeping up the blog and with calls and such. She went back to NYC to take care of things for a day or two and I think promptly collapsed and napped for most of the day — a well deserved respite. And although I know it’s taxing on her, I have to ask that we still go through her for a lot of communication – I’m simply not strong enough to email everyone or to talk on the phone just yet.
Many thanks to everyone especially for the comments – I read them regularly and just love them so please keep them up!
Strength and love to everyone,
It was an anxiety-ridden day, but all went well. Around 1pm all sorts of people were in the room – the defroster, the nurse practitioner administering the cells, my oncologist’s assistant, two nurses, my mom, my brother, his wife and tons of prayers and spirits of good will — in a tiny tiny room. (Oh … and myself)
All went very well except for a little weariness and discomfort in bed later, and some food issues. It was a long day but a good one.
I’m writing to you now from the beginning of day 1 and I feel fine but the journey ahead will test the binding of the new stem-cells to my body and see what happens from there.
I know my blood type will change – I’m formerly A-positive, my donor is B-positive – and I can’t wait to see what else changes. By far the biggest outwardly change is my name.
It is typical to consider day 0 your new birthday and as such, at events such as this, my rabbi even advised that I can add to my name. So I have decided to add “Yigal Chaim” – liberated/recaptured life – to my Jewish name and my rabbi will name me in services for Yom Kippur.
The whole religious aspect of this adventure still rings out sharply for me. “Hayom harat olam” – today the world is born we declare as part of the Yom Kippur liturgy. I can’t help but feel a whole new me is born too.
May we all be inscribed a happy and healthy new year – gamar chatimah tovah!
Strength and love,
Please remember to support us for the Light the Night Walk:
To make a donation, please visit:
To join the team and walk with us in NYC on October 4th (of in Philadelphia on September 29th) – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: http://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)