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More regular updates?

It’s no longer the Christmas season, according to my calendar. There have been four holidays since New Year’s Day, for you non-government workers out there: MLK, Jr. Day, Valentine’s Day (even though it’s a Hallmark holiday), Lincoln’s birthday and Washington’s birthday. I had three paid days off work, and used them well.

I traveled to North Carolina in January for an extended MLK weekend. My longtime friend Donnie moved there a few years ago, and we hadn’t seen each other since our respective weddings in April and May 2005. Even though we email back and forth several days a week and talk on the phone on occasion (we’re not teenage girls!), we were both looking forward to spending a few days together in person. In spite of some unforeseen events that happened that week and weekend, rain and snow, and me getting a cold, we managed to have a good time talking, hot tubbing, enjoying a cigar on the beach, watching the AFC and NFC championship games, and getting even more manly by putting together his new generator. Alas, I was traveling light that trip because of multiple connecting flights, so I have no pictures. It’s all in my mind, and there’s no cable that downloads that stuff to the computer (whew!).

Over the Super Bowl weekend, I joined a group of guys from church and drove to a cabin in the Kings Canyon area east of Fresno. In a nutshell, it’s extreme man camp–shotguns and clay pigeon shooting, snowmobiling, exploring in the Argo, red meat, beer, poker and other card games, reading woodworking magazines, etc. Good times.

Jen and I spent a few weekends driving around looking at houses. We’ve been thinking about buying our own place for a while, and the market here in Sacramento has been dropping steadily in the last 12-18 months. Some might even say it’s crashing! Regardless of how you classify the market, it’s an opportunity for those of us who were previously priced out of the market to take advantage of lower prices and lower interest rates. After looking at about 100 houses online, driving by about a third of those, and actually seeing the inside of maybe 15 of the ones we drove by, we finally decided to put an offer on one. After a few counter offers going back and forth, we are finally in escrow! This past week has been a little busy with the home inspection, chimney inspection, mold inspection, meetings with our agent and loan person, and lengthy discussions about finances and strategy (thanks, Dad!) At this point, we’re fairly confident that all will work out and we’ll be moving in early April. I’ll have pictures after we close and actually have the keys.

Last weekend, we drove to Palo Alto to meet with a lady who has tentatively offered to let us stay in her house when we do the transplant again. For those who don’t remember, we’re looking at going back to Stanford this summer for Transplant #2. Our generous hosts last year have had some things going on in their lives, and aren’t able to offer their house for us again this year. I must admit, we were really blessed to have that opportunity last year. The reality is that a situation like that isn’t common. Our meeting this past weekend was pleasant, and we are waiting to hear back about whether this housing situation will work.

I also started the referral process to get back to Stanford. A brief recap: Dr. Miklos wants to do two or three rounds of chemotherapy before I come to Stanford for transplant. The chemo will suppress my immune system, which wasn’t as suppressed as it could have been last time. Each round of chemo requires about three or four weeks in between. In order to go to Stanford in early summer, I’ll need to start chemo in the next month or so. Dr. Miklos also wants to do another bone marrow biopsy to “test for CLL with a very sensitive PCR test that we developed for you as part of the protocol”. He is surprised that my white blood cell counts have remained as low as they are (still below normal level). I’m scheduled to do that on March 4. The results of the biopsy will determine a new baseline disease level and may influence the approach the doctors take in treatment this time. All of this means that I’ll be posting more often as more information becomes available.

Here are a couple of specific prayer requests:
1. Housing at Stanford – We need to find suitable housing, just like last year. We are waiting to hear back from the lady we met with last weekend. If that doesn’t work out, we’re still looking.
2. House purchase here – Our lease ends at the end of June. If our purchase works out, we need to get out of our lease to avoid paying rent and a mortgage. In order to do that, someone needs to rent our current house.
3. Wisdom for the doctors at Stanford to determine a course of treatment.
4. Preparation on our part for the transplant – spiritually, mentally, emotionally, physically.


What a week!

As I mentioned last time, I headed up into the Sierras for our church’s men’s retreat this past weekend. It was a great time, for many reasons. The site was about two miles off Highway 80 at Yuba Gap, with the majority of that mileage being a rocky dirt road through the forest. I almost didn’t make it because of the inadequate traction of my truck’s tires, but eventually got to the lodge. Here’s a view from the lodge, overlooking one of two lakes on the property.
lake in sun
Fortunately, the sun was still out on Friday afternoon, and we were able to get set up in good weather. The sunset that night was pretty nice, if you’re into that sort of thing.
By Saturday, though, the clouds rolled in and it started to rain. Not too hard, since we were still able to break out the shotguns and shoot some clay pigeons.
After that, some of us attempted to use our orienteering skills to find various cairns set up all over the place. The trekking turned us on to great scenery, like this pond.
And another view of the lake, this time in the fog.
foggy lake
When the weekend was over, it was tough to get back to civilization and my second week back at work. Work was made better on Tuesday morning by a phone call from Dr. Miklos at Stanford, who had some good news. Recent donor registry searches found two donors who match me on 10 out of the 10 loci that are normally tested during HLA typing. As promised, Dr. Miklos ran the extra tests to find out how close of a match they really are. It turns out that one of those donors matches on 14 out of 14 loci!

So, we’re back in the pre-transplant phase. We still haven’t decided when we’ll try again, but it’s encouraging to know that there’s a very good match waiting. We have a lot to pray about now!

Meeting with Dr. Miklos: feeling low, lower, then higher.

Finally, another post!

As I mentioned last time, Jen and I met with Dr. Miklos on August 10 at Stanford to talk about future treatment options. His opening line: “Has anyone talked to you about how bad this donor was for you?” Needless to say, we were shocked, since we were told before that the donor was pretty good. Well, Dr. Miklos decided to do some further research after my body rejected the donor cells. He is a researcher, after all, and one of his goals is to advance the knowledge of cancer treatment. I have no problem with that. What follows below is my primitive explanation of our discussion.

Standard procedure for HLA typing includes testing and comparison on 10 points in the DNA of the patient and the donor. Wait, isn’t it 12? Apparently not, according to Dr. Miklos. Either I was misinformed or I misunderstood when I was told the donor matched on 11 out of 12 points. So, what was a 11/12 match was really a 9/10 match, and still an A. No big deal, if that was the extent of the mismatch. Dr. Miklos’ additional research looked at 4 more points in the DNA. Normally, the standard procedure is enough to go on because reasonably accurate predictions can be made about test results at other DNA points based on the results of those 10 points. For example, consider french toast. I know that when I have a certain combination of a griddle, bread, eggs, milk, cinnamon, nutmeg, vanilla extract, powdered sugar, butter, and syrup, the result is a delicious breakfast. I know this because I have experience with this recipe and have cooked it many times. If there’s too much vanilla, the result is overly rich. Not enough cinnamon or nutmeg? Too bland. You get the idea–if there’s a certain result at one DNA point, there’s usually a certain result at another point, so testing of that other point is not done.

What Dr. Miklos found, though, was contrary to the expected results at the 4 additional points he tested. So, instead of a 9/10 match, it was a 9/14 match (that’s a D). Hence, the donor was bad for me. There’s no grading on a curve when lives are at stake; the donor’s self esteem isn’t taken into consideration. What these results mean is that I can’t use that donor again. In hindsight, Dr. Miklos would not have recommended that we proceed with the transplant with that donor. Remember, though, that at the time we decided to go ahead, we only had that one donor, and everyone thought it was a pretty good match.

The good news is that in the few weeks before our meeting on August 10, the donor database turned up 4 potential donors for me. So, we have a much better chance of finding a better match now. Dr. Miklos said that they will continue further testing of these donors, and he will be sure to include testing the additional DNA points since he now knows that I’m a little unusual. No surprise there….

How does this news impact the timing of future treatment and transplant? We don’t know yet. We do know that I can do the same TLI/ATG protocol again, with a few cycles of FCR chemotherapy before the transplant. FCR might be a new acronym for most of you. It stands for fludarabine, cytoxan, and rituxan. These are the three drugs I got last time I had chemo in 2004. The purpose of pre-transplant chemo is to suppress my immune system to make it more receptive to the donor cells. Each cycle consists of 3 consecutive days of receiving the drugs, followed by at least 3 weeks off. So, that will take at least 3 months before starting the pre-transplant prep work again. I won’t start the chemo until a suitable donor has been identified and fully tested, though.

For now, I’m enjoying my time off from work. That’s right, I’m still not back to work. Even though Dr. Miklos said I can go back, my employer requires something in writing from the doctor stating that I’m permitted to return. Dr. Sayegh (my oncologist here in Sac) won’t release me back to work without seeing me in his office first (a reasonable request), but his earliest available appointment is on September 13. Meanwhile, I’m content to get up early with Jen, eat a leisurely breakfast, take her to work, come home and have some coffee and do whatever errands or tasks need to be done to keep the house in order. I just wish there were more of you free during the day to keep me company!

Back in the 916.

As of Monday this week, I’m back home in Sacramento. I still have to go to Stanford at least once a week for a few more weeks, but I can live with that.
home on couch

In anticipation of questions, here’s a brief FAQ. Some of these have already been answered, but I know most people don’t read everything.

Q: How are you feeling?
A: Fine.

Q: When will you go back to work?
A: Soon. I have to get my doc to write a letter releasing me back to work. Maybe in a few weeks.

Q: What can you eat?
A: Anything I want, except sushi. Since my return, I’ve already made a trip to the teriyaki place. It was good.

Q: What are you doing in your time off before going back to work?
A: Not much. This week, I’ve been unpacking all the stuff we brought back from Stanford. The house is a disaster area. No offense to those who have been in real disaster areas. I’ll probably wash the car and truck tomorrow or Saturday. I’m also thinking about going to the driving range, but it might be a bit dull by myself.

Q: What’s going on with the CMV?
A: I’m still doing the 1x/day treatment and am awaiting this week’s lab results to see if I have to continue the treatment after this week.

Q: What’s the plan for the future? Another transplant attempt?
A: Yes, another transplant attempt is in the plan for the future. When is another story, and I don’t have an answer for that just yet. I could speculate, but some people might take it as the actual plan, so I won’t.

Q: I tried commenting but it disappeared. What’s going on? How does this blog thing work?
A: I suspect operator error. In related news, I’m looking into other blog hosting sites and will probably move everything one of these days. Don’t worry, the URL won’t change. The look and layout might be different, but it’s still me. And Jen.

Another schedule change!

The past few days have been surprisingly busy, so I must apologize for not giving you my thoughts on sports quite yet. On Tuesday, my Uncle Paul was in the neighborhood and stopped by to visit. By “in the neighborhood” I mean the state of California. He and his family (that’s Aunt Dianne and my cousins the original Jennifer Smith and Tyler) live in Lincoln, Nebraska. He had been at a Freedom Writers conference down in the LBC, and drove up to spend a day with me and the grandparents. Karis also came down on Wednesday morning, and we spent the afternoon giving Paul a short driving tour of the Stanford campus, driving up El Camino Real through Menlo Park, Redwood City, Atherton, Belmont, etc., until we reached 92 and decided to head over to Half Moon Bay. We stopped at one of the state beaches there and walked down to the water to put our feet in. Paul said something about having never been to the Pacific Ocean and how Californians take such resources for granted, but I wasn’t really listening because I was thinking about going back home and beating the level I’m stuck on in Medal of Honor: Pacific Assault. Anyway, here are some pictures, including Uncle Paul’s first steps into the Pacific Ocean.

Karis, Uncle Paul and I getting ready to head out onto the beach.
group at beach

Uncle Paul and I getting our feet wet.
Paul & Todd

After the beach, we returned to Menlo Park and relaxed for a while, then headed out to Applewood Pizza for dinner. Did I mention that I’m finally off the low microbial diet? I can eat anything I want, except for sushi, which isn’t in the “anything I want” category anyway. I was even allowed to have a beer with my pizza, so I enjoyed a glass of Anchor Steam. I think it’s safe to say that all of us were satisfied upon our departure.

Back at the homestead, Grandpa decided to rest for a while. He’s been dealing with an infection (non-contagious) for the past week, and tires easily. I’ll leave out the details out of respect for his privacy, since most of you don’t know him. However, it’s something that warrants concern for those of us who do know him, so your prayers are certainly welcome.

The rest of us started up a game of Dutch blitz. Grandma and Uncle Paul took a few rounds to get the hang of it, but Karis had a strong showing and beat us all. The action was so frenetic that I didn’t have a chance to take a picture. We then moved on and played a game of euchre. Over last weekend, Grandma’s team gained two games on Grandpa’s team, reducing their deficit to only 4 games. Grandpa’s team, with Paul subbing for Grandpa, took the win last night, and is now ahead by 5 games. We all enjoyed some of Grandma’s berry pie with vanilla ice cream. All in all, I’d have to say it was a good day. I didn’t even have to use my AK.

This morning, I was back in the ITA for labs. Today is also the first day of one week of 1x/day foscarnet. This is a welcomed change from the 2x/day I’ve been doing. The results from Monday’s CMV test showed that the viral load was cut in half to the low 400s. I don’t remember the exact number. Other numbers are looking good.

WBC: 3.7
ANC: 2.11
HCT: 30.7
PLTS: 156k

Now, about that schedule change…On Monday, Karen the NP and I talked about the possibility of dropping to 1x/week ITA visits. The decision was postponed until the CMV results came in. Today she confirmed that I only have to come to the ITA once a week, if I can get a second blood test done at home in Sacramento. She is speaking to my oncologist (Dr. Sayegh) at SCHMO today, and will call me with the final answer later. I don’t anticipate any problems, and am planning to be back in Sacramento early next week. I’ll still have to drive to Stanford once a week and follow up with Dr. Miklos a couple of times in the next several weeks, but at least I’ll be able to start getting my home life back in order. I’m hoping to get authorization to go back to work in a few weeks, but have yet to figure out how that works with the disability paperwork, etc. Ah, bureaucracy, I miss it so.

Weekends at home are nice.

As many of you already know, the grandparents and I drove to Sacramento on Thursday last week. I was given another weekend pass, and decided to use it. Here’s a brief summary: rest, relax, hang out with Jen, watch a movie, catch up on TiVo’ed shows, relax, rest, deep breath and stretch, relax some more. In spite of our busy schedule, we were able to make it to church on Sunday. It felt great to be back, though I must admit I felt somewhat awkward when trying to maintain my physical boundaries. It didn’t work out so well, and I ended up shaking multiple hands (Dan–you weren’t the first, so don’t sweat it.) and giving bumps to a few of my little homiez (Tommy–thank you again for giving me Riley the Red Truck. Jack–thank you for the painting; it’s on the fridge.). I was careful to wash my hands afterward, and avoided the snack table (what a sacrifice!). I even took Aunt Dianne’s advice and showered when we got home.

It was also a little strange to see all the new people at church. A lot can happen in a few months. Don’t get me wrong, it’s good that Sanctuary is growing. There are times, though, that due to my personality I’d rather have that Cheers-like atmosphere. You know, where everybody knows your name. I’m going to have to start wearing a name tag again, I guess.

Today I was back in the ITA to start the week. My numbers:

WBC: 3.5
ANC: 1.8
HCT: 31.8
PLTS: 185k or so

I’ll finally go to 1x/day foscarnet on Thursday. Other than that, I have no news. This week’s CMV test results will be back on Thursday, so I’ll report on that then. I may treat you all to a discourse on sports in the next few days, or not. Speaking of sports, wasn’t Sergio’s choke job on Sunday a spectacle to behold?

Getting there (maybe).

First, let it be known that prompting for updates either directly or indirectly will not result in a quicker update. In fact, it may even cause a later update simply out of spite. As Ice Cube says, check yo’self before ya wreck yo’self. On to today’s news…

WBC: 2.5
ANC: 1.12
HCT: 28.7
PLTS: 183k

More importantly, the CMV test results showed that as of Monday, the virus level was 840. That’s down from 20,000. Apparently it makes a difference when the dose is right. I’ll continue the 2x/day treatment until Wednesday next week, and then drop to 1x/day for another week. After that, I’m hoping to be allowed to come home. I’m not making any plans until I hear it from the docs, though.

Karen the NP was back from her two-week vacation. We chatted briefly about my unused weekend pass from last weekend. She gave me permission to start relaxing the diet restrictions and to not wear the mask everywhere I go, as long as I use common sense. I like to think that I’m full of common sense, though I may have a tendency to push it sometimes. Maybe I’ll have to take my own advice and check myself.

Let’s see…what else? Oh yeah, I’m writing this from my house in Sacramento.