Beth did get home yesterday

She was actually waiting for me when I got to her room, some time after 5:00. The results of the biopsy weren’t back yet, but the doctor had said they were going to assume it was the GI version of graft-vs-host, and they were going to treat it that way. So we stopped at the pharmacy, which the hospital had called in advance, and we were able to pick up her prescriptions and go right home. 

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.

GVH skin ailments

We are down at the medical short stay unit today, and I believe Beth is going to have another bone marrow biopsy today, and a Chimerism test. But the nurse is not sure. (It would be the second time they didn’t know what was going on here.)

Last week Beth had some pretty bad rashes. Some of these seem to be healing. The photos here show some of this. She is still plenty itchy, but seems to be getting better.

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GVH skin ailments

We are down at the medical short stay unit today, and I believe Beth is going to have another bone marrow biopsy today, and a Chimerism test. But the nurse is not sure. (It would be the second time they didn’t know what was going on here.)

Last week Beth had some pretty bad rashes. Some of these seem to be healing. The photos here show some of this. She is still plenty itchy, but seems to be getting better.

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One more week in the MSSU

We got the first weekend “off” since Beth began her treatments early in December. She got to stay home Saturday and Sunday, while home health workers (RNs) came to the house and took care of her treatment. It was the first time we didn’t have to pack into the car and head down to West Penn. She’s still got about another week’s worth of MSSU — she still needs to receive another five or six day’s worth of the antibiotic she’s been taking for her MRSA infection. That seems to be the big reason to get down there.

Too, she’s having another bone marrow biopsy tomorrow. From that will come the bone marrow tissue used to do the Chimerism test, which will be our first look at how the “graft” is doing. We have evidence that it’s working because her white blood cell count is way up, but doctors want to see how much of the old bone marrow is left — in theory, it can’t continue to grow or make leukemic blood cells because it should have been “destroyed” in the “conditioning” phase of chemo and radiation. But some of it may be left around. And of course, the “graft-vs-host” effect should be continuing to mop it up.

Generally, I take Beth down there in the mornings, and our oldest son Jeremy has been picking her up.

Skin biopsy today, to test for GVH

They took a skin biopsy today, to verify that all of the funky markings on Beth’s skin is graft vs host disease. The PA who took the biopsy didn’t want me to photograph it. But after administering a local anesthetic, she used a small, hollowed out device that looked like the eraser-holder of a mechanical pencil. She rotated it on the skin on the back of Beth’s shoulder, pushing it deeper and making a small, circular cut on the skin. When she pulled it out, the skin came out with it, just a bit, but it was still connected on the inside. So she got a small pair of forceps, yanked on the loose skin a bit, and sliced off the small, circular piece that just been carved. It was about the size and shape of the eraser from a small mechanical pencil.

The purpose of this, now, will be to examine it under a microscope, to verify that the T-cells (lymphocytes, or white blood cells that handle immunity) are indeed attacking her skin.

While it would indeed be good news if that were the case — if they’re attacking her skin, they’re also attacking any of the remaining old chemo-and-radiation-infested bone marrow that may be left. Unfortunately, the process is not a very comfortable one, and it causes her pain and itching that just doesn’t go away. Reminds me of the time Nate got poison ivy real bad …

We should have the results of this by Thursday.

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.

Going home today

Beth has made it through the night with normal temperatures (though her blood pressure continues to be elevated): so it looks like she will finally be discharged from the hospital. She checked in to the hospital on December 8, so we have been here for three full weeks.

I mentioned last night that her white blood cell count was over 4.5; that’s within the normal range on some charts. But she’ll continue to face graft vs host symptoms. I asked if Beth’s blood pressure could be attributed to this; she said, probably not. It’s more likely that it’s caused by anxiety. Nevertheless, she got up last night and walked around the floor. That’s going to be one of our regular activities when she gets home: walks up and down the street to build up her strength again and to reduce her anxiety.