Wednesday, January 03, 2007

How do I get out of this?

Why is it that no matter what news - good or bad - you're expecting you never get what you think you're going to get? The news comes out of left field, out of the blue, wherever.

Yesterday I had an appointment with Dr Vose. It was a big appointment --- I had a CT scan last week that was going to help us determine my next steps. I had hoped to hear that the tumor had gotten smaller and that I could move right into stem-cell transplant. At worst, I thought I'd need more HVAC-C (the chemo I had last month). Instead, what I got was the tumor hasn't shrunk much at all (maybe 5%-10%) and that an autologous stem-cell transplant (where I "donate" my own stem-cells) probably isn't going to be effective. Now I have to hope that my sister will be a stem-cell match otherwise it could take four to six months to find a donor in the donor pool (and my body can't handle more chemo at the moment).

So, today I'm waiting. I'm going in for a PET scan hoping that maybe most of what the CT scan saw is scar tissue (the way I look at it is that a CT scan shows the buildings, a PET scan shows what lights are on - a PET scan tells how "alive" a tumor is). I'll talk to the stem-cell specialist about finding a match then meet with Dr Vose again tomorrow morning to hopefully get some good news.

11 Comments:

Blogger MaryC said...

Hey Tres, Wish the news had been better. Hopefully the PET scan will provide better insight. I also hope that your sis is a match. Just in case she is not, where can we go to get tested to see if we match?

Love,
Mary

10:19 AM  
Anonymous Anonymous said...

At least the scan didn't show it bigger! You can do this...hang on to all who are rooting for you. If you need another match let us all know and we can see if any of us match. Tres, be strong and if you can't we will hold you up!
Lisbeth Anne

10:42 AM  
Blogger johnsallot said...

Let us know what we need to do to be tested. You know we're sisters...I'm the older, wiser one and you're the younger, more beautiful one.

John

11:49 AM  
Blogger Ron said...

Let us know the results when the survey of the building's lights is done. It was fantastic seeing you over New Year's. You were a bright light, even in that raging blizzard: kinda like Laura Ingalls Wilder, but with prettier eyes, a better sense of humor and a nicer kitchen.

1:30 PM  
Anonymous Anonymous said...

Tres. I would say happy new year, but that doesn't seem right. How can I find out if I am a match? I hope the doctor news is hopeful. At least Omaha is clean.

9:56 PM  
Anonymous Scott said...

Hey Tres. Regardless of what has happened up until now--and there's been plenty--it is a new year. I spent the past hour reading your blog, getting choked up several times, but mainly feeling a strong sense of admiration for this man who has dealt with so much with such clear-eyed humor and common sense. I thought of you over the holiday, and wish we could have made it to Key West this year, but I'm still paying off last year's trip ;-). So we went to New Mexico instead to be with Cyril's Mom. His dad went into a nursing home last year and this was her first Christmas alone ever, so we went there to spend the holiday with her. We got in an hour before they closed every highway in the state of New Mexico due to the blizzard that smacked the Rockies, and managed to get out before the second one hit. Lucky lucky.

We are thinking of you and lifting you up as best we can. We are also willing to volunteer as stem cell donors if need be. Let us know how to do this if you need us to.

This comes with a wish for comfortable, happy days and much love.

Scott and Cyril

4:43 AM  
Blogger jon said...

I'm glad to see so many others had the same thought - can we get tested to find out if we're a donor match? Just remember its yet another bump in the ride - except instead of a rollercoaster where you can see the bumps coming, yours is more of 'Mr Toad's Wild Ride' where they come out of nowhere. (Did I just call you a toad?) You've made it around or over all the other bumps, hang on and you'll make it over this one too!

1:55 PM  
Anonymous Anonymous said...

Hey Tres. Be strong! You're in the same boat as my friend, James Chippendale. He found a donor in Germany and was cured. I emailed you his phone #. He said to call anytime ... 24/7 ... if you have questions about the process or support.

Love,
Jenin

5:37 PM  
Anonymous Anonymous said...

Ah, Sweet Pea, you're due some good news. It's TRES' turn!!! I'd come to your aide--even from another country. How dramatic would that be?! I'm sure we're a match. You're a black man too, right? (Of course you are.) Let me know when I need to arrive for the transplant. Surely there will be cameras...

Everyone has said it but I want to say it to: how do we get tested to know if we're a match?

Kisses to you!
Wade

6:24 PM  
Anonymous Anonymous said...

Hi Tres. I am totally in your corner sending you good juju (jew juju, actually). My goodness, you have such a strong supportive network of love and faith. clearly in response to the love we all feel from you.

Here is the link for anyone who wants information about the donor program. Also local blood banks should be able to steer people in the right direction.
http://www.marrow.org/index.html

love and light, leigh t.

9:16 AM  
Anonymous Anonymous said...

Hi Tres
Clint here (from London, now in Barcelona). I sent you an email the other day when I learned what you have been going through; not sure if you saw it. It has hit me hard reading about what you have been through. Is it OK to call you? I understand if not-you are probably exhausted. Of course, I add my name to those offering the donation, if I were to be the "chosen one"! My email address is clintontbell@yahoo.com. Lots of love from Yerp! xxxxxxxxxxxxxx

7:26 PM  

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