Thursday, October 23, 2008

Ugh, transplant postponed for 6 weeks

Seems like we've hit a speed bump, or rather, a large hole in the road on the way towards the transplant. It's day 2 in the "program" and after a full day of tests, our last meeting of the day was to discuss my case with doctors from the transplant team. Seemed like fun. Well, it didn't take long (about 3 minutes) before they dropped the bomb - they wanted to put the brakes on the transplant and do a round of induction chemotherapy before continuing. Crap. If you remember, we considered doing this about a month ago and decided against it since the bone marrow blasts were looking OK. There was even support for not doing it by some doctors at the Hutch. But as we've learned, there never seems to be one "right" way when it comes to cancer, and a lot of it simply comes down to a doctor's gut instinct. And right now there are a lot of doctors that just don't feel comfortable with me going into a transplant with my disease at the level it's at. Induction chemo is relatively intense, and it will require an additional hospital stay of 4 weeks and then 2 weeks of recovery after that. But it should put the disease into remission or at least make it less severe. So even though it's more aggressive and delays the process, we'll do whatever it takes to have the best chance at success for the transplant. That's our #1 goal.

But after such a good experience yesterday and for most of today, I feel like we just got kicked out of the cool kid's club. Everyone is so friendly and everything is so *organized* at the Hutch. There are also people of all ages there that don't look sick at all, unlike at hospitals or medical centers. It was nice for a change. So anyway, I'll probably go into the hospital at Swedish next week for about a month, then 2 weeks of recovery, then we'll start where we left off at the Hutch. It's kind of a bummer, but it's the right thing to do.

Here's what our day looked like today:

10:45 - 11:15 Patient Finance
This was a meeting to make sure we have the insurance coverage to finance a transplant, which is very expensive (it's mind boggling). Or rather, the Hutch wants to make sure they're going to get paid.

11:15 - 12:00 Nutritionist
A nutritionist went over what I can and can't eat with my immune system as low as it is (I forgot I wasn't supposed to eat Miso soup) and gave an overview about what I'll be able to eat after the transplant. The good news is that it's not as restrictive as we thought. She also gave me an "A" for nutrition since I have good daily eating habits, my cholesterol and triglycerides were great, and my other food-related blood counts were all good. Woohoo! It's nice for a change to hear that *some* blood counts are still OK.

12:00 - 12:30 - Chest X-Ray
The technician let me pore over the x-rays and I had fun tracing my PICC line and looking around at various organs inside me.

12:30 - 1:00 - Lunch
Good old cafeteria food. It wasn't bad actually. Today they had meatball sandwiches and spaetzle to choose from.

1:00 - 2:00 - Social worker
We met with a social worker who is there to help us through the whole process and make sure we're taking advantage of all the kinds of services the Hutch offers. Basically he asked all sorts of challenging and personal questions that made us cry a little.

2:00 - 3:00 - Dentist
The Hutch has their own dentist, since tooth and gum decay can be serious issues when undergoing a transplant. But the dentist was very happy with me and I got another "A" for the day. Woohoo! The funny part was that a few residents from UW came along with the dentist, and as the dentist peered into my mouth, so did all the residents. So as I'm looking up at the ceiling, I'd see the dentist hovering over me, then 3 other heads would pop over me as well. And the other heads looked like they were trying really hard to see something important. It was pretty comical.

3:00 - 3:30 - Blood Draw
This blood draw was actually scheduled for 12:30, while we were at lunch, which we thought was funny since they didn't actually give us the updated schedule until 1pm. All in all we had 3 schedule changes in one day. They run a tight ship, for sure.

3:30 - 4:00 - EKG
After the EKG we actually got to rest on the bed for 15 minutes, which was the first chance we'd had to relax all day. That rest helped us get through the next appointment...

4:00 - 5:00 - Conference with transplant doctors
This was when everything fell apart. After only a couple of minutes of being in the room, he wanted to know why we hadn't done induction chemo. We could tell he was genuinely surprised. So then he got on the phone and we had a conference call with other members of the team including one of the senior members of the Hutch whose specialty is MDS. To make a long meeting short, we agreed with them that we should do induction chemo and put the whole transplant thing on hold. It was a tough decision, especially since we'd already had the discussion a month before and at the last minute decided against induction. But our goal has always been to maximize the chance of a successful transplant, since our biggest fear is that it simply won't work, and we're willing to treat it as agressively as possible since I have age in my favor.

5:00 - 5:30 - Replace dressing on PICC line
Another week, another PICC line dressing change. I'm beginning to enjoy the PICC line more and more and it's less of a bother each day. The only bother is having to wrap it in saran wrap to take a shower, but it's not too big of a deal.

Tomorrow we're scheduled for more blood draws, an infusion of platelets, and a spinal tap. Should be fun :)


Beth said...

Hang in there this is only deferral not denial
Jeff and Beth

George said...

Good Lord... ok looks like I'm going to have to check in more frequently. Keep your spirits HIGH!!! HIGH!! HIGH!!

Britt said...

I'm proud of your attitude towards this. Stay grateful for the wait & for the better choice for your life. God acts on behalf of those who wait for Him:)Think of waiting as something like planting a garden(one of Jo's specialties). You put a seed under the soil and water. Then you...wait...&wait...&wait.. After the sun and rain pelt the earth the seeds begin to see evidence of what you planted. Now, suppose you had grown impatient and dug up your seeds,b/c nothing seemed to be happening? You would have ruined your garden!!Remember, some fruit takes a long time to mature-&the One who wants to bring it forth in our lives knows exactly how long we need to wait, & (I'll use your lingo now) which programs are the right and orderly ones to install:)Waiting makes it possible for the most luscious fruit of all,or hi-techiest computer of all!! Keep your faith shield risen, bud! We've all heard laughter is good Rx,& I've noticed you like to record your times.The following wbst holds the day in the life of a computer addict:
Hope you get kick out of it!
Brit--Jo's cuz