Another uneventful weekend

We had an uneventful weekend. Of course, my Facebook friends who pay attention here know that I fixed the toilet over the weekend. Those kinds of small household chores scare the daylights out of me.

Speaking of “fear”, I fully expect that we’ll hear from the doctor this week to say that they’ve selected a donor (from among the three 10/10 matches we’ve found) and there is a schedule for the transplant. Almost any way you put it, it looks now like we’ll be tied up with hospitals for Christmas. (Unless they decide to hold off the transplant until after Christmas, but I can’t see them doing that.) If they do select a donor this week, our 3-6 week “window” falls right in December.

Beth had a restful weekend. Going to church has become her big event for the week. Getting up and showering, then going to Sunday School and the worship service is a major effort. But she loves the church, she loves the people there, and she’s even made some good friends. But then she has to come home and take a long nap.

And, as far as my theological writings are concerned, this one is sure to be a winner: The theologia crucis and Luther’s critique of the analogical nature of theological language. At least the title is an exciting one 🙂

Our second potential donor is approved

Yesterday I learned that we have confirmed a second 10/10 donor, and we may learn of testing results from a third. That would mean we will be able to select from among three potential qualified donors. Given that there are 10 million people in the US database, and seven million people in the international database, to come down to only three potential matches … that’s just an amazing number to me.

One of these individuals is from the United States, by the way; the other two are from the International list. So in that case, we may have to wait for an international flight to bring in the stem cells on “transplant” day.

In agreeing to submit to all of the additional testing we’re asking them to do, all three of these folks are tacitly consenting to be donors, but once the doctors select the best donor, then that person will need to be recruited — that is, I guess there is all kinds of paperwork and legal stuff to be filled out. I don’t know much at all about that process, but there is some further work to be done.

We’ve been under the impression that it will take about six weeks from the time a donor is selected until “transplant”. So if the donor is selected next week, that would put “transplant” for us right in the middle of December. And that, in turn, would mean a week or more in the hospital, followed by 30 solid days’ worth of running to the “medical short stay unit” at West Penn, where Beth would have daily blood tests and would then receive transfusions of whatever might be needed on that particular day, whether that be additional hemoglobin, or platelets, or intravenous antibiotics, or whatever.

I say “30 solid days’ worth of running”, but that’s only if she’s healthy. There is a 75% chance during this time that she will need to be admitted because of some kind of infection. In fact, the whole first 100 days, Beth will be in an extremely vulnerable condition – not having an immune system of her own, but dependent upon the immunities of the new stem cells that are implanted into her.

It’s a long and convoluted process, and given that this is the only cure for the leukemia that Beth has, as bad as it gets, the cure is not worse than the disease. Although, we are told, it may seem that way at times.

The good news is that God Rules. That is the one constant in the world that we can truly count on.

The disease has been controlled

The Doctor’s report yesterday was fairly decent. The disease has been “controlled” by the medication she is taking. That’s the biggest thing. The real danger back in June was that she would progress from where she was (“15% blasts in marrow”) to aggressive “acute myelogenous leukemia” (AML, marked by 20% blasts in the marrow). After her biopsy last week, we found out her blasts level was back down to 4% (and all healthy people have 5%).

There are still anomalies in her blood. Overall, her blood levels are very low (though rising), and a certain kind of white blood cells called “monocytes” are doing some crazy things. The marrow report said “in summary, there is an absolute monocytosis consistent with a myeloproliferative disorder.”

The particular brand of leukemia that Beth has, “chronic myelomonocytic leukemia” (CMML) is marked by both “myelodysplastic” and “myeloproliferative” characteristics. And as I’ve written in the recent past, when the disease is marked by a change from “myelodysplastic” to “myeloproliferative”, at least one study I’ve seen has suggested that this is a not-good progression in the disease.

(Our doctor is not one among those who sees this as a progression — he prefers to look at the actual numbers, and to say, “they are still in the good range”. And I am certainly in a position that I need to trust his understanding of things more than my own.)

The bottom line is that, while all of these movements are traceable and discussion-worthy, the only important thing is that Beth be in “the best condition possible” for the bone marrow transplant, which likely will happen in 6-8 weeks. Again, some think the dysplastic–>proliferative switch is a progression that can hurt her chances in the transplant; but our doctor does not.

On that front, we do not yet have a donor, although there are a half-dozen individuals who match on 10 out of 10 specific DNA markers. These folks are going through additional testing. The reason we only have six is because Beth has an unusual combination on a couple of the more important DNA markers. And among these six, none are “ideal” – in the sense that there is an “ideal” profile of a healthy young male, no tattoos or piercings, who has not had any major diseases in his life.

These folks are older, some of them are older females who have had multiple pregnancies (and the related antigens that can cause some issues).

Our doctor says that we will move ahead with the transplant just as soon as one of these donors is selected. And I’m hoping to place a call today to the “transplant coordinator” at the hospital who is actively working on this to find out what’s happening.

A tentative transplant schedule

Over the last couple of days, I’ve been going in to work from 5:00 am till 9:00 am, to get in four hours, before leaving to take Beth to her Vidaza treatments and doctor’s appointments. Wednesday and Thursday she will only have Vidaza treatments, so I’m going to continue go in and work very early in the morning, then leave to take her to her treatments, and then drop her off at home and go back to work for the afternoon, to get full days in. We’ve had to do it this way because all of the older guys started school this week, and I’m trying to take off as little time as possible.

One of my greatest fears is the prospect of taking unpaid time off of work, and thus not having an income during the critical time when Beth is most heavily involved in her transplant process. We learned quite a bit about the transplant procedure and schedule yesterday.

First, there are at least five potential donors who matched on 10 of 10 HLA (DNA) categories. Not all of these are ideal simply because of their age (in their 50’s), but they are continuing to search and there may be more of these folks, as well as some 9 of 10 matches that may be more well suited physically. And again, there needs to be some further testing for all of them. (Apparently in one of the more important categories, Beth has a somewhat rare combination of markers).

Beth’s oncologist, <a href=”http://www.wpaci.org/specialists/index.cfm?sh=s&d=348&p=1253″>Dr. James Rossetti</a>, told us that, because of Beth’s <a href=”https://johnbugay.wordpress.com/2011/08/24/an-important-update-to-the-blood-charts/”>recent progress</a>, we have every reason to expect that she can “move to transplant” as soon as we find a suitable donor.

Here’s the rough transplant schedule when that occurs:

  • Daily Outpatient treatment (3 days, -9 to -6, treatment with Kepivance)
  • Inpatient chemo and radiation, (6 days, -6 to -1, Fludarabine, Busulfan and Thymoglobulin, and two days of total body irradiation).
  • TRANSPLANT (Day zero)
  • Daily Outpatient – from approximately days +1 to +30. Daily monitoring (five- to 10-hour stays) at <a href=”http://www.wpaci.org/index.cfm”>West Penn Hospital’s</a>Medical Short Stay (MSS) unit. There is also a 75% chance of an infection that will require a readmission.
  • Days +31 to +100 – twice-weekly office monitoring.

If there is going to be a relapse, it will most likely occur during the first year after transplant. Two years out from the procedure, the chance of a relapse is minimal (just 1% To 2%). And five years out, that risk is almost nonexistent.

Beth has a roughly 15-20% chance of mortality during this process. In the <a href=”https://johnbugay.wordpress.com/2011/08/23/back-home-from-the-intake-meeting/”&gt; mortality chart provided below</a>, the “immediate complications” include all kinds of infections, as well as acute Graft vs Host (GvH) complications, some of which can be fatal. Some chronic GvH complications can also be fatal, but most are treatable with medications.

The ideal outcome will of course be that Beth can live out a long and healthy life span, with minimal requirements for medications to control GvH symptoms (which can also fade over time).

Early on I told Beth that this was not a disease that she’s temperamentally suited to have. She’s always been more of a person of action: “tell me what to do, and I’ll go and do it.” But there are many uncertainties with this process. Those uncertainties are hard to deal with, but the meetings we had yesterday helped to clear up many questions we’d been having.

Interestingly, Dr. Rossetti is a former Roman Catholic and a convert to Eastern Orthodoxy. We had a bit of a conversation yesterday about church fathers and ancient Rome and T.F. Torrance. Pretty cool.

Vidaza, Cycle 3

Beth immediately responded to the Vidaza today, in a negative way. After two transfusions in recent weeks, she has been feeling about as well as she has felt in months, over the last few days. However, the Vidaza treatment reminds her that it really is a kind of “chemotherapy,” and the “cytotoxic” effect just knocks her on her butt. Back again are the diarrhea and the body aches and the desire to sleep all the time.

Yet the other thing that Vidaza does is to “change the genes” in the blood cells. Enables the blasts — “baby” undifferentiated blood cells — to differentiate and become normal healthy cells.

There are three major cell lines in your blood: red (hemoglobin), white, and platelets. Beth’s red blood cells are consistently low and they don’t seem to be responding. White counts and platelet counts are low but holding steady. This is one of the good effects of the Vidaza. Neutrophils (white cells) are low but holding steady. Monocytes (another white cell) are high. That’s one of the reasons why this is “chronic myelomonocytic leukemia” (CMML).

The intention is to have her bone marrow in as good a shape as possible in preparation for the transplant. Dr. Jalil said yesterday he wishes her hemoglobin would have shown some signs of recovery by now. But, he says, “after only two treatments, things look good.” If her hemoglobin still was not responding after three, four, five treatments, “we would be a little worried”.

What if it doesn’t respond this time? He says they’ll still go ahead with the transplant. My sense is that it’s the only real option. If she were 75 years old, they’d continue with the Vidaza and blood transfusions so long as they made her comfortable. But the prognosis for this disease is not a good one. They’ll want to do the transplant, to wipe the slate clean anyway.

We’ll find out more about that at the intake meeting today.

This gets bigger the further we get into it

At first it was a struggle just to learn what was wrong. Last Monday, after about three weeks and two hospital stays, we finally learned what the diagnosis was going to be. (And two separate biopsies have confirmed this).

The other night, Beth got a call from someone in a support group sponsored by the Leukemia society, from a woman who had undergone this procedure probably about eight years ago. She is experiencing some ongoing “graft-vs-host” symptoms, and so Beth asked me to look them up.

In my Googling, the site marrow.org kept coming up: with an excellent overview of the procedure; with an excellent overview of the follow-up treatment; and, in a dimension that I’d thought about but which really only hit me now for the first time: the financial aspects of it.

As it turns out, this Vidaza treatment and even the period of intense chemo and radiation known as “conditioning” are only the tip of the iceberg with respect to this entire process. The real “marrow” of the thing, so to speak, occurs post-transplant.

Up to a point, you don’t even know the right questions to ask. You’re just trying to find out, “what’s the next thing we have to do, we want to get it right.” Yesterday I had my first glimpse of what might be termed “the long view,” and I can see now that it’s just going to take a while to get my head around the process.

Here are just some of the steps:

Some time during days 30-100, you “will probably” get to go home from the hospital, but still there, will likely be almost daily outpatient follow-up. In the “long term survivorship” document, it is said, “by one year after transplant, many transplant survivors are able to take part in their usual activities, such as work or school.”

And none of this is to talk about the financial considerations that go along with this whole process.

Beth came home from the hospital yesterday

I brought Beth home from the hospital yesterday. She’s completed her first round of Vidaza – five days’-worth of it – and now she’ll get a three week respite from IVs. But there is still going to be a fairly intensive regiment of “taking blood levels” and, if necessary, blood transfusions.

The Vidaza is supposed to inhibit some of the cancer process and enable her to make her own blood. Which is a good thing. But it will also work to begin to suppress her immune system in anticipation of the transplant.

Some of these effects will become evident in days 10-14 of this “course” or “cycle”. I’m not sure what that will mean; but we’ve got to be careful about keeping the house clean, washing our hands so as not to spread infections, and things like that. I’m glad this is happening in the summer.

Beth still wants to go to work this weekend, and also to fill in, as she had promised, the week of July 11 for her friend Cindy, who has been planning to take a vacation. She’s doing this for a couple of reasons – out of loyalty to a friend, to be sure, and also to try to earn some extra money now, while she is still able to do it.

In theory this is possible, according to the doctor. She is able to maintain her activity levels for now. But in practice, she’ll be exposing herself to some possible infections. The next course of Vidaza is scheduled to begin July 23. We’re not sure if that will be the last, or if there will be one more. But once the “conditioning” begins for the transplant, then she’s a resident of West Penn Hospital for a while, and she won’t really be able to emerge to “real life” for at least several months.

We found out an interesting side effect of this process. She’ll likely emerge with a completely different blood type, and a brand new immune system. The donor match takes into account about a thousand different variables, but blood type is not one of them. They’re going to completely “re-format the hard drive,” so to speak. She’ll also need to undergo all of her childhood vaccinations as well. All of those six-months, nine-month fifteen month shots that babies have to go through – she’ll have to re-do those as well.