Sunday, March 29, 2009

Words From the Other Day

Milestone birthdays are tough. You hit 30 or 40 or 50 and you often anguish over getting so old. Well, today, March 26, 2009 is a tough milestone of a different kind because James would have been 40. It really puts in perspective how lucky we are to be alive despite the pain and hassle of life. James wanted to be here so badly. He fought with great courage and through a lot of pain to try and make it to this day. It was weird enough that his beloved Pittsburgh Steelers won the Super Bowl and he was already gone. And now this.
On his 39th birthday some of us gathered at a Mid-East restaurant. It was fairly early in the entire medical battle. I remember saying as I left that the party I really wanted to go to was his next birthday party in a year. By then James would have dealt with this and it would be behind him. I remember being scared about what could happen, but confident thinking how impossibly unjust it would be for this not to work out.
Well, that birthday has arrived and James is gone. I miss the guy. He was one of those big personalities who add a lot to life. The fact that it would have been his 40th birthday really emphasizes what I’ve felt since he died. This was a bad, unfair, tragic deal and James really got screwed. But life can be like that.
Oh well. Happy Birthday, James. You are truly missed.

Wednesday, November 26, 2008

Missing James: One Month In

This morning I was crossing 39th and a woman in a car slowed down and shouted, “Hey, Bill. Sorry about James.” I heard it in Starbucks a few days ago, and from a cashier at Zupan’s last Friday. In fact, I stopped at Zupan’s after turning in the last of the cable access shows – we were obligated through December. The next few weeks of the Born to Slack show are frankly, kind of lame. They’re just some standard reruns of other subjects like the protest march, etc…James isn’t even in them. This past week was the last official rerun with him in it – a vintage show from 2004.
I watched it again last night and it was all there: James’ spirit, humor, and charisma. Of course, all the references were already dated - it’s so weird to think about him in the past tense. I’ve gone through lots of different stages with this, as I'm sure you all have. One day for a little while I thought about breaking stuff up with a bat. That was the anger stage. Mainly I’m just worn down from trying to process this.
However, every now and then, I feel the joy of life. My wife will say something funny or the sun will hit just right. It is a beautiful predicament we’re in being alive. James died on October 27th. Tomorrow is November 27th, 2008, Thanksgiving. I miss the guy. It’s been a month and I still can’t believe he’s gone. But that is what we’ve got.

Monday, October 27, 2008

James Shibley: 3-26-69 to 10-27-08

I knew things weren't going all that great. James was weaker than I remembered, almost inaudible on the phone. Still, this was how things could go in the normal course of firing up a new immune system. The big danger was that something lethal would come along and attack him during this long dangerous stretch. We regret to inform you that this is exactly what happened. James was attacked by a fungus, and went back to OHSU where his prognosis was described to me as grim. I last saw him Friday. He was in terrible shape by then, yet whispered to me, "How's it going?" So his last words to me anyway were an attempt to be funny. This encapsulated the courage and toughness James has displayed throughout. The idea of him suffering like he was for very much longer was unbearable to me. We held out hope to the end for that miracle comeback, but it was not to be.

When he died this morning, I felt quite a bit of relief that his suffering was over. As the day wore on, the sadness welled up. I've lost a great friend here and the idea that the James Shibley Era is over in my life and in the lives of so many others, is just too harsh. He was a great person and very, very funny. I just hope it won't be long before the images of these last few days fade and we remember him in good health, full of life and humor: The irrepressible, irreplaceable James Shibley. ---Bill McDonald

Wednesday, July 23, 2008

The Latest News on James

Hello Everyone,

It’s been awhile since we have written for the blog. Our close friend Bill has been nice enough to keep things going over the past two months. We realized today just how long it’s been and thought a note to you all was in order.

James was released from his second hospital stay on Thursday, July 10th, in time to go to our friends’ wedding the next day. He was in the hospital for 27 days this go-around. His official diagnosis for treatment while in the hospital was Graft vs. Host Disease (GVHD). This is when the new donor immune system doesn’t recognize parts of James’ body so assumes it is something bad and attacks it. In general, GVHD attacks the skin (a rash), the digestive system (think REALLY BAD stomach flu), the liver, and the eyes.

James’ GVHD manifested in a skin rash and problems with his digestive tract. Because he wasn’t absorbing any food, he needed to be put on IV supplements. He was without important proteins for awhile, which led to CRAZY water retention (James gained 40-50 lbs in water weight in 1 week, he blew up like the Michelin man, poor guy). They increased his steroids to treat the GVHD, which led to medication induced diabetes, for which he is still being treated. Meanwhile, several viral and bacterial infections began to rear their heads. It was all a bit overwhelming for the first two weeks he was in hospital, but slowly James began to make progress on all fronts. He is eating a very restricted diet to give his system a chance to heal and taking lots of meds, but he is home and doing well.

Although the GVHD is alarming, there is a potential good side to it: when the rest of his body is being attacked by the donor immune system, if there was any remaining marrow of James’ that was not destroyed by the chemo, it is likely also being attacked. This means that if there were any remaining marrow cells with MDS in James’ bones, the new donor immune system likely destroyed these at the same time they were attacking his stomach and skin. The doctors like to say that “a little GVHD is good” specifically for this reason.

We just found out great news! On his last day in hospital James underwent his first bone marrow biopsy post-transplant. This is the most important post-transplant test. From it we found out that none of James’ old marrow cells were present, only donor cells. This is wonderful news as it tells us that engraftment has occurred and the transplant was, at this point, successful. James’ marrow will be tested several more times over the coming year to make sure that the level of donor cells remains high, but this is a great first step. We are still awaiting some additional tests from the biopsy to see if James’ chromosomes are also healthy. We will let everyone know when we find out the results.

On the financial side of things, we did receive some bad news when James was in the hospital: we have officially exceeded the allotted transplant funds according to our insurance plan. This means that much of James’ second hospital stay and subsequent procedures will be paid out of pocket by us. We will be joining a new health plan soon, but we suspect that we will owe between $20-$75K, depending on what we can negotiate with the hospital.

We will be having some fundraising events in the next few months to help defray these costs and will keep you posted regarding when and where these will be occurring.

Thanks for all of your support and encouragement.

James and Stacey

Thursday, July 3, 2008

July, 2008: Two Months After the Transplant

Okay, here's the first James Shibley update in a while: When the medical people said this would take a year, many of us - including James - figured that would be front-loaded to the main event, the transplant itself. When James went home from the hospital afterwards, things were looking great. James was playing with the kid, and going for long walks. In short, for a few brief shining weeks this all seemed to be drifting into the past.

However, there is a reason doctors go to med school - it's to learn more about medicine than the rest of us, and it turns out they were right: This will take a year.

Several weeks ago, James went back into the hospital and it looks like his stay this time will be around a month. He mentioned possibly going home by the early middle of July. I don't think he is in any unexpected danger for this procedure - he just needs to be given medicine intravenously and he can't do that as an outpatient. Obviously, it's a huge challenge emotionally to do this all again - for all of us but especially for him and Stacey.

The way I see this is that we were surprised and shocked back in December, 2007, at the news and scope of the initial problem. For months, that never really had a chance to dissipate. I'm grateful for the weeks when James returned home and life seemed almost normal again. This stretch gave us a break to recover from the first go-around. Now that we're rested again, we should be less surprised at this setback and more used to the idea of this as part of life in 2008.

Yes, it sucks. I mean it really sucks. But it's supposed to suck so that's what it is doing. James has aced this procedure up until now. He was in the top of all possible responses. Hopefully, this is a temporary dip into a more typical reaction to an unbelievably complicated and invasive medical move.

So, onward. One other good thing is that the second month in the hospital is part of that year it is supposed to take for James to recover. So time is passing with the 3 most important words in all of life: To Be Continued. ---Bill McDonald

Sunday, May 25, 2008

One Month Since the Transplant

Okay, it's been a long arduous process but enough about the Democratic primaries - how's James doing? I noted this morning that it's been 16 days since he returned home. One month ago tomorrow the transplant happened. That's a lot of little healthy cells growing and dividing. James came up with a good line about the entire process: A crazy balance between help and harm. Or was it "A crazy balance between harm and help"? The point is there is still a lot of finessing going on. Good things have to happen but not too fast.
So nobody is declaring victory here yet but the anxiety level has dropped from 2,000 miles up to around 100 feet. I've even begun wondering about the emotional toll, not just on James but on Stacey, his family and his friends. At times like this, you tend to bury emotions just to get through the ordeal, especially if you were scared by it. That's what this was: Courage versus fear and to get our courage up, we definitely suppressed some scary thoughts. Now that things have brightened again considerably, I'm turning to healing the spirit. Or at least recognizing that there could be issues here.
I even have a new suggestion for universal healthcare. First, do you realize what an opportunity the government has to win over the People during these problems? I mean I used to be very critical of OHSU for South Waterfront, etc... but after this I'll never badmouth them again. I am now an OHSU fan.
The politicians should provide universal healthcare, not just for us, but for their own job security and popularity. This should be an area where the normal dog-eat-dog rules don't apply and we take care of each other: "Oh, you're sick. Relax and get better and don't worry about a thing financially. We've got you covered."
Not only should that be automatic, but it would be less expensive than the sicko system we have now. That's the crazy part.
So what's my new idea? After all of the medical expenses are covered, there should be free counseling. Nothing out of hand. Just a few sessions where anyone who experienced the fear we just experienced can talk to someone and get the information needed to help put this behind us. That would be good government in action. It's not enough to beat these problems, if we're emotionally dinged by them going forward. Not only would you have citizens grateful for how they were treated but they would be healthier mentally to go out and be productive again. It could pay for itself although they said that about Iraq, too. Oh well. Just a thought on a rainy morning in May, 2008. ---Bill McDonald

Friday, May 9, 2008

Homeward Bound

According to our friend Troy Wagner in Florida, James called saying he was just getting ready to leave the hospital.---Bill McDonald
P.S. The record for release after this procedure is 12 days and James did it in 13, so that's cool.
Welcome Home, James!