Friday, September 26, 2008

We're a GO on the 9/10 donor

Well, after 2 months of searching it sounds like we will be going ahead with the female/22/US donor. She is the last of the three 6/6 donors to get fully typed, and she only mismatches on a single HLA-B allele (hence the 9/10 designation).

This is pretty big news, though Johanna and I have mixed feelings about it since it's not the "perfect" 10/10 donor like we were hoping for. But, beggars can't be choosers, and the alternative would be to wait for a better match which could take years, and the doctors have repeatedly said "Steve needs to be transplanted soon."

The biggest issue with a mismatched donor are increased risks of Graft vs Host disease (GvHD), a disease in which the new immune system attacks the organs and tissues of the host body. From what I understand, about 50% of transplant recipients develop GvHD after the transplant, and in some cases it can be life-threatening. Risks of GvHD increase with mismatched donors, and also with female-to-male donors, so I'm getting a double-whammy :) In most cases it takes about 5 years of treatments to finally get rid of it. GvHD usually manifests itself as problems with the skin, eyes, mouth, liver and digestive tract. For example, mouth and throat ulcers are common, along with tear duct problems that can cause dry eyes and various kinds of skin rashes. More severe versions can cause liver damage. The drugs to treat GvHD can also cause diabetes and other problems. Exposure to sunlight can also be a big problem, since it often causes flare-ups of GvHD even after it's gone. Good thing I live where I do :) However, all of the people with GvHD have said they prefer it to the alternative, which is being dead from leukemia. Bleh.

There is a tiny silver lining to this in that *mild* cases of GvHD are actually preferred, since they give rise to what's known as graft-versus-leukemia, which is where the immune system not only attacks the host's organs and tissue but will go on the attack against any stray cancer cells as well. Research has shown that patients with mild cases of GvHD actually have better survival rates than those with no GvHD at all. So it's not all bad.

Here's an interesting webcast with more info on the subject.

In other news, my best friend from high school, Shawn, is visiting from Germany and is coming to town in a few hours! Woohoo! We haven't seen each other in more than a decade. Should be good times.

Oh, and I have another bone marrow biopsy scheduled for Monday. Fun. Hopefully it will be as interesting as the last one. :)

Tuesday, September 23, 2008

The slowest commute ever

Last Friday Johanna and I walked to work with my dad and Jenny. It's about a 7-mile trip (8 miles to Steve's office) and it took us about 2.5 hours. We've been walking about 2-3 miles every morning so it wasn't too bad. This is the 2nd time we've done it, and I think we'll make a habit of it (i.e. every other Friday) since it's a great route and there is a lot of interesting stuff to see along the way. The idea came about when Johanna suggested it one morning to cheer me up. I'm always up for a challenge, and it was still pretty early in the morning that day, so off we went.

The cool part is that I took pictures along the way with my iPhone, which automatically keeps track of the GPS location of each picture. I uploaded them to Picasa which created a map of all the pictures we took along the way and where it was taken, so now you can see the route we took. Click here to see the map of all the pictures.

Walking through Woodland Park

Early morning commuters stuck in traffic on Aurora

Johanna on the bridge, about to enter "the tunnel"

Entrance to the Woodland Park Rose Garden

Dad, Johanna and Jenny on Fremont Ave

Stop for coffee at Peet's

On the Fremont bridge, overlooking Lake Union

Houseboats on Lake Union

Old railroad tracks along Westlake Ave

Stop for a break at a new park in South Lake Union

Downtown Seattle from Capitol Hill

The National Park(ing) Day folks had set up a "park" outside my office. They were all over town that day.

Pictures from the "platelet party" in Albuquerque

Thanks to everyone in Albuquerque who donated platelets and blood and moral support. These folks donated a total of 17 units of platelets and 4 units of whole blood. That's a lot! Here are some pictures from the event. I can't believe how many people showed up. It looks like everyone had a great time.

Results of donor search

A flood of info came in today about the donor search. If you remember, there were three 6/6 potential donors and one 9/10 potential donor. Amazingly, all 4 have been contacted and went in for blood tests, and here are the results:

  1. 6/6 donor (46/female/US) - mismatched at HLA-A allele, DRB1 antigen, DQB1 antigen (too many mismatches)
  2. 6/6 donor (22/female/US) - mismatched at HLA-B allele (best)
  3. 6/6 donor (46/female/Europe) - mismatched at DRB1 antigen, DQB1 antigen (too many mismatches)
  4. 9/10 donor (39/female/US) - mismatched at HLA-B antigen (2nd best)

What this means is that none of the donors are a full 10/10 match, but the #2 donor (22/female/US) is the best match since she only mismatches at a single HLA allele (an allele is sort of like a sub-component of an antigen). Unfortunately, mismatching at an HLA-A or HLA-B allele isn't so great, since it's been found to be a significant factor for the occurrence of graft-versus-host disease after the transplant. In larger studies a mismatch at either of these has been shown to reduce overall survival rates. So while everything could still go perfectly fine, basically the odds go up that there will be complications. There is a discussion going on between the transplant physician and my doctors to see how we will proceed. The main issue is whether to risk using a 9/10 donor now to get to transplant quicker or waiting for a better donor and risking the disease progressing to something worse.

Also, I had another platelet transfusion on Saturday (whoopee) which seems to be par for the course now (a transfusion a week after the end of every chemo round), so now that the chemo is done and the transfusion is out of the way, the next 2-3 weeks should be pretty normal again. I’m scheduled for another marrow biopsy 2 weeks from now and we will decide whether to do another round of the same chemo, or go with induction therapy, which is a very intensive form of chemo that may require in-patient care. The purpose of induction chemo is to get the disease into remission to bide more time.

Johanna and I are thinking it might be time to organize a marrow drive to see if we can get a better donor.

That’s it for now.

Wednesday, September 17, 2008

Kung Fu Stever

Check out this cool picture Pam made for me!

I am the Kung Fu fighter!

Sunday, September 14, 2008

Third round of chemo is over

Today was the last day of the 3rd round of chemotherapy. Definitely happy it's over. Each day the nurses found it harder and harder to find a vein, which is typical with chemotherapy since it can destroy your veins and dry them out. So yesterday and today it took 3 attempts to find a suitable vein and my arms look like a mess.

Most people getting regular chemotherapy have minor surgery to put in what's called a port-a-cath, a device inserted under the skin near your heart with tubing that goes directly into a main artery. Kind of reminds me of Iron Man. The nurses can then just plug into that thing and don't have to worry about pricking for veins each day. But since my chemo was only for 5 days we figured it wasn't necessary. I'll be getting a port anyway when I'm in the hospital for the transplant and for the 30+ days after that, but I'd rather avoid having this thing hanging out of my chest until I really need it. It can kind of gross people out.

The other annoyance was that each day it took about 4 hours to fully administer the chemo, from the waiting room, to the initial hooking up to the IV, to administering the pre-med drugs, to getting the actual chemo drugs, then flushing the lines and finally dressing the wound afterward. It doesn't sound like a lot, but it means your whole day is pretty much shot. *And* you have the added benefit of feeling crappy and tired afterward. For example today all we did was have brunch with a friend, then headed to chemo at 11:45, then finished up at 4pm. Ugh! But I'm allowed to complain to you guys since this is my blog :)

Feeling kind of crappy right now. The effects are kicking in and mainly involve being tired and experiencing "chemo brain", which makes it hard to concentrate on things and hard to have conversations with people. You also feel like your arms and legs aren't attached to your body very well. It's not fatigue, it's just a strange sense of disconnectedness and you have to think about how to move your arms and legs about so that you don't fall over. Very strange. The thing I look forward to the most during these times is quiet time with lots of rest and not very many distractions.

Ciao for now. The side effects will probably continue through the next few days, then should subside after that. Wish me luck!

Thursday, September 11, 2008

Free marrow registration for a limited time

My sister found out about this. From her email:
For a limited time, from September 7 to 22, the registration fee of $52 to become a bone marrow donor is being waived thanks to a generous sponsor. Please sign up today to receive your free kit in the mail. All it takes is a simple cheek swab, and then you mail it back.

While the chances of being a match for my brother are extremely low, you may end up saving someone else's life. The more people in the registry, the more people who have a chance of survival.

Click here to join

In case you are prompted for payment and can't bypass the payment page, the promotional code is NASC262101. It is supposed to show up automatically, but sometimes it doesn't.

Thanks so much for your support.

Tell all your friends if they haven't signed up yet (you can click on the title of this post for a permanent link to this post).

Albuquerque "platelet party"

Last weekend there was a blood drive in Albuquerque, organized by my mom and her friends, to encourage people to donate platelets. Platelet transfusions are frequently required by people undergoing stem cell transplants (they can require up to 120 units of platelets) or by people who have certain types of blood cancers (I've had 2 transfusions already), so it's the next best way to help someone in need if you've already signed up with the national bone marrow registry. Unlike red blood cells, platelets can only be stored for a few days, so the blood bank is constantly in need of them.

It sounds like the drive was a wild success! Here's an update from one of the organizers:
Final count was 17 units of platelets and 4 of whole blood! Evelyn was saying how timely this was because some of the blood centers in LA were closed because of the hurricane and therefore there was a serious deficit for the week. And even better news, several said they would consider donating more often, so it was a good awareness raising event as well.

Love the t-shirts -- we printed out the photo of the 5 of you to hang on the wall -- near the mountains of food! I think I gained a couple of pounds sampling all the goodies the members brought!

Want to get a thank you article to the newsletter tonight.

So keep your spirits up -- you've got a lot of people rooting for you.

To put it in perspective, it takes 4 full donations of whole blood to make 1 unit of platelets. Another benefit of donating platelets directly is that they can be donated more frequently than whole blood, up to 2 times per week versus once every few months.

Great job guys!!

Wednesday, September 10, 2008

First day of chemo, round 3

Today is the first day of the 3rd round of chemotherapy. This time we're trying Dacogen (Decitabine) which is a little different than Vidaza (Azacitidine), the chemo drug I was on for the last 2 rounds. We're switching since Dr. Goldberg isn't happy with the results of the Azacitidne. "It's not working" is what he said. Yup, I agree. So we're trying Decitabine, which is in the same family as Azicitidine but it's newer and apparently offers a similar chance at increasing the counts. It's new enough that it had to be special-ordered and the nurses were unfamiliar with it and had to learn about it. It's also administered intravenously instead of subcutaneously like the Azacitidine. The Azacitidine was nice since the sub-q injections only took a few minutes, but they left nasty bruises. The IV for the Decitabine on the other hand takes an hour to administer. Apparently if they try to squirt it in any faster it can burn your veins. Yuck. So either you get a quick injection with bruises, or a painless injection that takes an hour. I think I prefer the quick injection. Who cares about bruises. But those were the good old days I guess :) It's probably all IV from here on out.

Part of the chemo that's hard to accept is how toxic it is. You're reminded of this each time the nurse arrives with the drug and you can't help but notice the prominent warning labels on the bag. The nurses wear gloves and take the utmost care not to spill any when handling it. They're very careful. So it's disconcerting to watch them take so much care in handling it only to have it all get pumped directly into your veins. It's hard to grasp, especially for someone who generally tries to take care of himself and avoid situations that might be, oh say, super duper toxic. Oh well, such are the risks we take.

This round is also different in that instead of taking the anti-nausea drugs at home in pill form, they can just pump it into my veins along with the chemo, so it takes care of it all in one shot. So the whole process with the IV involves: finding a vein (they don't use the big veins in the crook of your arm since they don't want to pollute the area with the chemo drugs for any upcoming blood draws), hooking you up to the IV machine and taping all the tubing down, administering the "pre-med" anti-nausea drugs, waiting 30 minutes for the anti-nausea drugs to settle in, administering the chemo drug itself which take an hour to drip in, then unplugging you from the machine and dressing everything up. Today we showed up at 4:30 and didn't leave until 8pm. Woohoo! Only four more days of this to go.

Johanna was awesome and not only brought mexican food but also brought pizza as well! The treatment center has their own food and snacks and beverages so we had lots of food to tide us over. We all joked around and I read my New Yorker magazine for a bit and then it was all done. No side-effects yet, but I expect them to start in a couple of days if it's anything like the last 2 rounds.

Oh, and today was the first day of our Qigong class (pronounced "Chee-Gong"), which is an ancient Chinese technique similar to Tai-Chi. Our friend Greg recommended it since he found it helpful when he was going through the stuff he was dealing with, and he's been studying it ever since. The particular Qigong we're doing is called "Soaring Crane Qigong" and emphasizes the healing aspect (in general Qigong is used for health maintenance purposes, as a therapeutic intervention, and is also a component of Chinese martial arts). It's also very relaxing and peaceful to do.

Anyway, the class is over the lunch hour so it was great to have a break and be able to relax halfway through the day. The instructor was great, and Johanna and her mom and Greg all went with me so that was cool. A lot of people were there because they had cancer or knew someone with cancer who spoke highly of Qigong. All in all it was an interesting first day and I'm looking forward to the weekly classes.

Here are some pictures from the chemo treatment:

Me getting pumped up with the Decitabine chemotherapy drug (see it doesn't look that bad)

Johanna's mom Vernee was there to provide support and to see how all this stuff worked

Monday, September 8, 2008


Oh, about the t-shirts, Johanna is coming up with a way to let everyone order the shirts on their own using the same site we did. I think this will be a lot easier for everyone since there are different t-shirt types and colors and you can have your name spelled however you want. I'll post something about it once we get it all figured it, probably in the next couple of days. The t-shirt itself is really nice too, not like the thin, cheap American Apparel shirts. They have ladies Ts too.


Last Friday we got the hell out of dodge and took a train down to Portland. It was an awesome weekend, partly because of the weather (in the 80s), partly because Portland is just so damn homey sometimes (I like it more each time I go back), and partly because we were completely oblivious to all the medical crap going on back home. It all seemed so far away. The train ride was nice, especially on a Friday afternoon when the freeways would have been packed, but I'm on the fence about the whole taking-the-train thing. It *was* nice being able to read and watch movies and just chill but I still like having that sense of control, like being able to say "let's stop here" for a bite to eat.

Favorite moments: stopping in for kick-ass tacos and great salsa at a Santa Fe restaurant in Nob Hill, coffee and hanging out at Powell's, sampling truffles at Moonstruck chocolates, Johanna ordering room service for her first time, goofing around after dinner trying to catch a cab, getting lost in Chinatown on our way back to the train, and laughing about how we always end up in Portland during the dragon boat races.

Anyway, the realities of "all that medical crap" came crashing down today when I got a call from the nurse saying we were scheduled for chemotherapy at noon, and for me to "pack my bags" since I was being admitted for it. What, what? Yeah we planned to put me on a different kind of chemotherapy drug, but it shouldn't be *that* different to what I was on before. At least not enough to warrant a multi-day hospital stay. Eventually it got sorted out (a few hours later) and it turns out the chemotherapy drug only requires an hour-long infusion, so after dealing with that and getting the requisite blood work done, we're finally at the lab later that afternoon to get the chemotherapy and they're just about to punch another IV in me when they find out that this new chemotherapy drug isn't in the hospital. Oops! Apparently it's pretty unique and has to be special-ordered from somewhere and the treatment center didn't have enough notice (we were only scheduled for chemo that morning). So we ended up spending a full day fooling around with all that without really getting anything done, though the emotional and mental strain of it all was exhausting. It really is a full-time job sometimes. That's what we get for trying to forget about this stuff for a couple of days. :)

Some pictures from Portland:

Wednesday, September 3, 2008

Some good news and some bad news

First, some bad news: the results from last week's biopsy are in and they show an *increase* in blasts in the bone marrow, not a decrease like we were hoping. Darn. When I was first diagnosed they were at 10% which meant I had a specific type of MDS called "Refractory Anemia with Excess Blasts", or RAEB. Now the blasts may be as high as 34%, or 13%, depending on how they're counted. Why such a discrepancy, you ask? Well, apparently my marrow is producing a lot of defective red blood cells which confuses the computer, which is the culprit behind the higher 34% value (stupid computer). When a human counted it, they only saw 13%. But either way, this means the disease is progressing towards full-blown leukemia, or specifically, Acute Myeloid Leukemia (AML).

This wasn't entirely unexpected since most people with severe MDS end up with AML if left untreated for 2-3 years, but I was beginning to get comfortable with the whole MDS thing and felt like I had a pretty good grip on it. Now it feels like a whole new ball game. Am I going to have to start all over researching AML? No. The diseases have a lot in common and a lot of what I've read applies to AML as well. In fact, it's called AML when there are more than 30% blasts in the marrow and MDS when there are less than that. So it's just a naming convention. And they still don't entirely agree whether 30% is the right threshold to use. A few years ago it was 20%. So if you go by the computer's number (34%), I have AML. If you go by the human-counted number (13%), I have MDS type RAEB. If you're still with me and want to entertain the idea of picking some value in between, say 23%, then I would have MDS type RAEB-t (the t means "in transition" to AML). So who knows what it's called. The downside is that the chance of success with a transplant is smaller as the blast count increases, but we're trying not to think too much about that part right now. Statistics schmatistics.

So the way I look at it, we're just collecting more data points so that the doctors are happy and getting the dial on me more fine-tuned so that we'll have the most information going into the transplant. It doesn't matter to me what they call it, the counts are still behaving the same way, and a transplant still offers the best chance at a full recovery.

But enough of the bad news, the *good* news is that 2 of the 3 donors have responded! Loyal blog readers will know that there are 3 donors who are 6/6 matches (2 in the U.S. and 1 in Europe). The first donor responded last week, but unfortunately wasn't found to be a match after getting more fully typed. But the 2nd donor, the woman from Europe, responded today and is scheduled for a blood draw next week! We should have the results of her typing in a couple of weeks. Keep your fingers crossed! Also, I found out that there are multiple 9/10 matches that we may be able to pick from, not just the 1 like I had previously thought. A 9/10 match essentially means the person only matches 5 of the 6 main antigens, but match all the rest. In most cases a 9/10 match is as good as a 10/10 match, so hopefully we'll hear about a donor soon. Johanna and I lamented to Dr. Goldberg today that the search seemed to be going awfully slow, but he assured us that it was actually going very fast as far as these things go. So we'll just continue to stay busy with other stuff and not worry so much about it.

Oh and check this out, my dad and Johanna wanted "fan club" t-shirts so they could show support for me, and designed these cool t-shirts for us to wear around. They each have our names on them. We just got them in the mail yesterday. Awesome!

Monday, September 1, 2008

Busy weekend

When my parents have an itch to scratch, man, they really itch it! This weekend we had in mind some minor yard work we wanted them to help us out with, and what started out as an unassuming morning of weeding ended up as a full-out assault on both the front and back yard. When all the dust had settled we were left with our driveway and all the yard waste containers *full* of yard waste. We had hacked and hacked and hacked out old plants, tore down ivy from the apple tree, pruned the big trees in the front yard, and weeded, weeded, weeded away until none of us could move anymore. We had so much yard waste that we had to rent a trailer to haul it all away, and even the trailer was overflowing. So Johanna and I hauled it all off to the dump this morning and we now have a wonderfully clean and beautiful yard to enjoy. Hooray! It's so gorgeous. Luckily we were able to squeeze in a few other fun things as well, like Johanna getting a massage and spending some quality time with Jenny at Swanson's Nursery, her favorite garden store, and Steve getting some solid scooting time in (134 miles!).

Part of the scooting adventure involved my dad and I meeting up with Simon, and old friend of mine, and scooting all around Seattle including Magnolia, Alki Beach, West Seattle, South Park, Seward Park, and Lake Washington. Whew! What fears I had about Simon trying to keep up with his little 49cc scooter were quickly laid to rest the minute he tore off down the street from his house. It was a *brisk* ride :) The weather was great and we got to have coffee and eat some wonderful chocolate crinkle cookies at Alki Bakery.

Here's a couple of pictures of my dad and Simon at Seward Park, one of our many stops along the way.