Etc.

I posted a comment in response to a comment in my previous post. It has some info I'd like you all to have, so may I please direct you there?

Yesterday

Actually, not yesterday, but the day-before-yesterday. That was Tuesday the 27th, when I did the Collection/Harvest.

First, the GREAT news: my body produced (they collected) enough stem cells in one go that I don’t have to do it again!!! That means two things:

1. No more G-shots (“Growth Factor”)! The injections were no problem, but the effect was to make me really tired (why I didn’t write yesterday) and somewhat achy; give me some headaches and intense but passing lower back pain; and – worst of all – greatly increase the number of white blood cells in my body (with an auto immune disease, they are, essentially, an enemy).

2. No more four-plus hour stays at the SCCA! Wasn’t bad, got to be in a bed the whole time. I scared them once and was the center of attention when my BP dropped to 80 over 53! I felt no different since I was drowsy the whole time…. Anyway, they slowed the process (basically blood going out through one port; being processed in a centrifuge; and what isn’t needed coming back in through the other port.) I drank more, ate more, and it quickly went back to where the doc was comfortable. But of course it took longer, but fortunately when they finally called just before 8 pm, the news actually made me HAPPY – really happy.

(Maybe eventually I’ll be so back to normal that I won’t use so many parentheses or italic, bold, etc….)

Now I go in for a couple days, mostly just for blood work. But I’m finished! - until I go into UW hospital “next week” – probably the 4th. I’ll for sure be there 21 days – perhaps longer - beginning with six days of chemo to obliterate my bad immune system. On Day 7, my harvested stem cells will be transplanted.

That becomes Day 0. I’ve been encouraged to celebrate this as my second birthday. Then the days are counted until my new, baby immune system engrafts: 10-28 days.

Not sure what my restrictions will be on visitors. Will let you know. But the other GREAT thing about Tues. was that the mail included two cards! Thank-you to each one of you who have posted comments and/or become a Follower of my blog; sent me an email; or written a card – I may not respond but please know that it means a lot to me. In Shannon’s words, it is something that makes me happy.

She's Not There...

I'm back home! We tried the hospital for a couple days, but I didn't seem to need it & home is much more accomodating in so man ways. We are playing by ear the harvesting, scheduled for Tuesday. Inpatient is always an option.

Was good to visit the floor whivh will be my home for at least 3 weeks. Now I know better how to prepare and what to bring.

I’ll Be at UW Hospital Tomorrow

At our meeting Wednesday, we decided to go with my doc’s recommendation to do the growth factor, etc. drugs as well as the collection—as an inpatient, meaning that tomorrow at 9 am, I’ll be admitted to UW hospital for about a week. (Then I’ll be home for about a week and then I’ll start my 3-4 week stay for the actual transplant.)

This part of the process can leave people pretty tired and the doc saw that I don’t have many reserves so she felt it would be better all around to play it safe and be an inpatient. She also told us the GREAT news that immediately after the long hospital stay it would be just fine with her that we came back to our own house! (I.e., we don’t need to stay in Seattle!)

Got the line placed today. Not too bad, but I’m ready to sleep, though I’ve kind of been doing that all day.

And So It Begins - For Real

I’ve just watched a broadcast of Dr. Martin Luther King’s “I Have a Dream” speech. Made me teary a couple times to think what he represents and how far our nation has finally come. (If you’ll forgive the unsolicited political blah-blah, I’m so glad Obama, not McCain, is our new prez!)

It also reminded me that though this huge process consumes most of my thoughts and my time, I am just one person. Though I hope to still have an impact – however small – on the world: if this transplant is successful, it will help pave the way for others with my disease; and, I really want to get back out in the world as a volunteer – that has been part of my identity forever, I guess. So, onward…

Friday I got the call that my Central Line placement appointment was moved up from the 27th to this Thursday, the 22nd. FYI, this line will be “my friend” for the next few months and will be used for everything from simple blood tests to giving me nutrition if I’m not taking in enough. Its first use will be infusions of stem cell growth-stimulating drugs followed by collection of those cells, so with its placement comes a firmer timeline that puts me on target to enter University Hospital on about Monday, February 2 and begin 6 days of chemo. (On the 7th day my collected stem cells will be infused and we’ll wait for my new immune system to “engraft.” But I’m getting ahead of myself…)

The next ten days or so will be busy with trips to SCCA. Rick will be my main driver/caregiver (except tomorrow Deb takes me to the UW for a swallowing/speech evaluation) since along with the procedures we’ll be receiving info we both need to know.

Also, this is not the only HUGE thing happening in our lives.

• Robin leaves for New Zealand (!) on February 8: she’ll be studying there for a school year as part of the UW exchange program.
  
• AND Darren, having finished his degree in December (BFA in Graphic Design), will be moving up from SoCal to live with us – to help as much as needed and to find work up here. This will happen as soon as he can work out how to get himself and his stuff up here as cheaply as possible.

So there’s a lot on our plate.

I’m in!

Yesterday was my final day of Testing/Evaluation, and everything looks good for me to go ahead!

The next step is Stem Cell Collection and to do that I need to have a Central Line placed in my chest and the first date the docs were given was January 27. They and I are hoping to do it sooner – ASAP, really.