The measure of a lifetime

Beth-Then-and-Now
How do you measure a lifetime?

I was riding Beth home from the hospital yesterday – Lord willing, it will be the last day there for a while. A home care nurse is coming to administer her IV antibiotics over the weekend (and yours truly may get to do that on Sunday). She is still contending with some of the difficulties of graft vs host. She still has some itchies. Other problems she wouldn’t care to have me mention.

But remember, too, that it is the graft vs host effect that also works as a graft vs leukemia effect – it will continue to work inside her to attack and kill any latent leukemia, bad bone marrow, etc. That is the plan, anyway.

I love the little girl photograph of her on the left, and I look at her today, after all she’s been through, and I know, beyond a shadow of a doubt, that hers is a lifetime that’s been given to me. That is, even though I only met her at age 26, and I didn’t know her as a little girl, but everything she is, everything she’s suffered from that point till this, has been entrusted to me, as her husband.

Not long after the little girl photo was taken, she suffered a kind of triple tragedy in her life: her parents divorced, her mom came down with Multiple Sclerosis (which incapacitated her very quickly), and then she and her mom and sister were then moved to another state where they lived with grandparents who didn’t really want them and weren’t very kind about it. All of that happened within just a couple of years. It led to a hard life in which she became a runaway, was in and out of foster homes, and eventually led her to join the army. And once, as a young woman, she found security in the army years, it made sense for her as a 40 year old woman to join the army when another national crisis occurred.

God uses the things that we suffer to shape our lives. In some very real way, our sufferings are a part of us.

Signs of graft-vs-host effects?

Beth is getting some blisters on the edges of her hands and feet — it seems as if these are nascent signs of graft vs host. We’ve been told that skin rashes are one of three distinct signs of graft vs host disease. While this sort of thing is annoying to her, it also represents signs that the immunity of the new bone marrow (and blood) that’s growing inside of her are perceiving that any signs of her old, leukemic bone marrow, are “enemy” and are being targeted, destroyed, an “mopped up” with the precision that God gave to human immune systems.

This is the third wave of medical science hitting her disease, the first being the chemotherapy, and the second being the total body radiation. Our hope now is that the symptoms on the outside don’t become too maddening, while fully enabling the work on the inside. And this was the point of all the HLA matching as we looked for a donor. The magic work in “tweaking” the “graft vs leukemia” was done months ago.

Beth has definitely got the body aches today

I’m not sure where the majority of our bone marrow resides – in our hips, thighs, ribs? But Beth has definitely got the body aches in her mid-section today. Having a wife who has leukemia is easy some days, when she’s happy and carefree, knowing her blasts are down to 5%, she’s joyful from her relationship to Christ, when she’s playing or coloring with the kids, and yes, especially when we’re sharing close, private time together. It’s a mite harder when she’s curled up in a ball on the bed with the “deep down body aches”. I suspect that has something to do with some damage that’s been done to her bone marrow (she’s down to 20%), but that’s just a guess on my part.

For those of you who have been following my theological writings, I’ve put up two more posts this morning:

The Kingdom of God
What’s gone wrong with the world, theologically, in the last two centuries?

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.

Yesterday’s news

“Normal marrow is 50%. Yours is 20%.” And that’s good at this point.

We learned a few things in our appointment with Dr. Jalil yesterday, though I’m not certain I understand it all. Dr. Jalil’s is where Bethany has been getting her Vidaza treatments. He had received a copy of Bethany’s bone marrow biopsy results, but he hadn’t had a chance to read them closely yet.

We did learn a few things. Large, trendy things, I guess you could say.

First is that the treatment seems to be working effectively. “As expected”. That is, while we have been watching Bethany’s blood levels go up and down, the general trend is that almost everything is going down.

Early bone marrow biopsies showed her being “hypercellular” – that is, her bone marrow was marked by extra tissue, and even some scar tissue. Now she is at about a 20% level of bone marrow. That is, yes, very low. Explanation: “the medication is controlling the disease”. (Blasts and monocytes, in aggressive leukemia, would tend to build up. That Bethany’s is so well cleared out is seen to be a good thing.)

For example, in an early biopsy, her blast counts were 10-15%; now they are 4%. Normal folks are at 5% blasts in their bone marrow (blasts are “baby blood cells” that grow up and differentiate. In aggressive leukemia, the blast number tends to exceed 20% to 30%, and they really “gum up the works”. So this level is good).

Beth’s monocytes are still hovering around the 10% level. That they have not gone higher is a positive thing. (They could have moved from 10% to 20%, but they didn’t.)

In short, the treatment kills both bad cells and good cells. And we have seen some good cell production in this.

Finally, I saw something I had noted in all of my poking around to learn things about CMML. I emailed Dr. Rossetti about it:

I believe I saw that Beth’s condition, once “dysplastic”, now more exhibited the “myeloproliferative” characteristics. Without knowing exactly what that means, I want to point you to this recent study (again, with the low number of patients from CMML), in a school of thought that may or may not be well accepted, that the shift from myelodysplastic to myeloproliferative properties is really a progression of the disease.

http://www.ncbi.nlm.nih.gov/pubmed/20371679
http://clincancerres.aacrjournals.org/content/16/8/2246.long

I realize that we are dealing with some pretty nasty stuff — it’s not quite AML, and the low numbers of blasts and other numbers are good. But I hope you can put this into context for us.

And he responded:

The two variants remain largely distinguished by the height of the white count. Beth’s white count is well controlled and her marrow is actually exhibiting lower cellularity than before. Thus, on a clinical basis, I do not think she is transforming.

While there are emerging data suggesting a continuum, this does not seem to be universal. At her young age, I would be inclined to the same treatment either way: first an MTI [methyltransferase inhibitor – Vidaza], then transplant. If at anytime we see evidence of progression, we may consider chemo. At present, I like where we are headed.

The good thing, then: there is no “progression”. Dr. Jalil summed it up: “We want to see the least number of bad cells.” That, he suggested, was the definition of healthy marrow. Even if it’s only at a 20% level.