Wednesday, January 7, 2009

2.5 weeks to go

I'm sitting in a Starbucks on Queen Anne nursing a double short latte. It's raining buckets outside, and my rain jacket is soaked. I just walked up from Fremont while listening to the latest This American Life podcast. The wifi is free and I'm buying coffee with the Starbucks cards I got for Christmas, so it's a good deal. I don't have much to report, except that things are still on track, and I'm keeping busy with appointments at the SCCA and spending time with my family. Besides attending classes, my only job right now is to stay healthy and stay hydrated. My nurse wants me to drink 3 liters of water a day, which isn't really so hard since I end up drinking a lot while taking all the necessary drugs 4 times a day.

Johanna and I were a little down last night and this morning, since a fellow blogger who underwent a transplant has taken a turn for the worse in the last few days. She had a cord-blood transplant over a month ago, and has been in ICU for the last 4 weeks with small bits of good news, but generally steadily getting worse. It started with a kidney complication, which led to fluid accumulating in her lungs which they had to drain each day. Her lungs became damaged and she went on a ventilator soon after. Possibly because of all the medication and antibiotics, her heart started beating irregularly, and they had to restart it once. Her husband has been steadfastly blogging the whole time. And all the time I'm hoping for the best and have been assuming that, though things are bad, they will turn around eventually and they will all look back on it as just some really tough times. It's like watching a dramatic movie and thinking to yourself that surely the director won't end it with a tragedy. You just never really think that the worst could actually happen. So it has been sad to read the last few blog entries and realizing that it's possible she won't pull through. She's 19 (sorry, she's 28), and though her leukemia was worse than mine and she didn't go into her transplant in remission, reading about her struggle has really had an effect on us. And from her pictures you can see that she is a vivacious, young 28 year old with tons of energy and is smiling in basically every picture. Yesterday they got news that her leukemia had returned with a vengeance, and they don't plan to restart her heart if it stops again. She's been under chemical paralysis and heavy sedation, so they might not even get to say goodbye to her. It's all very sad and so I think it has made Johanna and I a little down the last few days. So cross your fingers and toes and pray that she does ok. Her name is Dawn and her blog is at

Captain Dawn

Yesterday I met with the transplant team and it was an uneventful meeting, which is great. Everything is still on schedule and we're just waiting to see what next Wednesday's CT scan shows. I'm getting anxious now and am ready to get this thing done with so that I can get back to work and a normal life. Assuming the CT scan looks good, the transplant schedule shouldn't change from the following:

1/12 Mon - Clinic visit with transplant team
1/13 Tue - Food safety class
1/13 Tue - Managing care at home class
1/13 Tue - IV pump class
1/14 Wed - Blood work
1/14 Wed - CT scan
1/15 Thu - Patient/caregiver support group
1/15 Thu - Data review (go/no go meeting)
1/16 Fri - Surgery for Hickman central catheter
1/17 Sat - Hickman care / teaching session
1/19 Mon - Admitted into UW Hospital
1/20 Tue - Start 5 days of intensive chemo
1/26 Mon - Transplant

That's about it for now. Check out these awesome turkey burgers our friends Nic and Rachael made for us the other night! That's Nic, with their cute but hyperactive pug, Lola. :)


Lee said...

Steve and Johanna:
Please know that our thoughts and prayers are never ever very far from us. We wish you the best.
Uncle Leon and Aunt Sue

p.s. Uncle Leon's hair is getting shaggier and shaggier. Uncle Jeff even asked last weekend if we didn't have any barbers out here in the "country". Got to admit tho it is beginning to look pretty curly and unkempt. Pony tail by next year?????

Steve Rider said...

Ha ha, that's funny about his hair. My hair has started growing back, but it's a bit scraggly and not very even. Though I am growing blond facial hair back with a vengeance. Just in the last few days has it started to turn back to its normal color.

rachael said...

We will certainly keep your friend in our thoughts. It would be hard not to let her story get you down.
I'll cross my fingers for the next CT scan, and before you know it, you will be on your way to the transplant!
Nice pic of the T. burgers by the way...looks like a restaurant advertisement. Oh, and cute picture of Nic and Lola too! :)

Nic said...

Well, I went to visit Dawn's blog, read through about half the post, went to lunch, came back and refreshed the page, and that was it... she was gone... :-(

That's really terrible... but, of course, there aren't words that can accurately describe how much so...

Her blog and story took about a half a minute to get wrapped up in, so I can understand why it's effected you and Johanna as it has...

I'm sorry...


On a different note, I have back to back 50Ks the 2 days prior to your transplant (1/24 & 1/25) any special request?

George said...

I too took a few moments to look at Dawn's site. Very sad news. I did have her in my thoughts.

Even though we all meet the endgame it doesn't make it easier especially when they pass so young. I can't imagine the grief or pain of friends and family.

That being said... let's stay positive and keep our prayers with you and your family.

You are doing so awesome. I really can't believe how I remember it came on you so fast and now it seems like it's been with you for so long.

But you can beat this and we will have many happy times to come.

I'm ready to come by to help whenever. I am not squemish of tubes. However I don't like mangled knees... so just don't mangle your knees.


Steve Rider said...

Ha ha George... Johanna said she will try not to break my kneecaps over something before you come out :) said...

Dear Steve --

My name is Ina Bedke, and my husband Curt and I are old military friends of your parents (we lived next door to each other at Minot). They graciously allowed us to "drop in" on your blog -- and we have been following your progress with hope in our hearts. Please know that you have two more people in your corner ... knowing them, we know they raised a strong son. -- Ina & Curt

P.S. Your mom throws a mean snowball - ask her about her aiming skills, especially during a snowstorm in Enid, Oklahoma. Those skills could come in handy during your snowy winter weather ...