No news is good news

A couple of people have mentioned to me that they haven’t seen any updates here. And that’s just a case of “no news is good news”. We saw Dr Rossetti yesterday. Beth reported that she is feeling “fine, wonderful”. And that’s about the way it goes these days. Of course, she is not totally well yet. Not anywhere close. She spent six months last year with her blood being eaten away by leukemia and Vidaza, followed by a “stem cell transplant” that was a complete shock to her system (“intensive chemo, full-body radiation, then an infusion of new DNA that might or might not be able to co-exist with her present system). Months in the hospital with a mightily suppressed immune system and some of the nastiest infections I’ve ever seen.

It’ll take her a long time before she gets anything near her old strength back. She really is skinny. The Lovenox injections have left her with some pretty bad bruising in her abdomen area. As much as I tried to be careful, they are nasty, painful little shots. The purpose of injecting them into the abdomen is to get them into some fatty tissue that won’t feel much pain, but she is just too skinny to have much fatty tissue left.

Our 25th anniversary is coming up on June 1. We are going to take a couple of days off and go to, of all places, a “cancer survivors camp”. It’ll be out in the woods, but there are supposedly all the amenities. (This has not yet been confirmed, but it’s what we’re planning. I’ll have more on this later).

One of my Facebook friends recently lost his wife to leukemia. And one of his Facebook posts said simply, “I wish I’d held her hand more”. I am very conscious that I could have lost her, but did not lose her. Right now, my wish is simply to hold her hand as much as I can.

Beth may get to come home Tuesday

Little by little, she’s getting through the multitude of complications she’s been dealing with. The BK virus, which was manifesting as a urinary tract infection, has pretty much cleared up. Her CMV virus numbers (the more serious of the two viral infections) came back negative on the last test. It had been off the upper end of the scale, in the millions. They’ll take another test on that tomorrow, and have the results Tuesday. If that’s negative, she should get to come home.

She’s still pretty beat up. The blood clot is still there, making her right arm to look like Popeye’s arm. She still has those signs of malnutrition, too – her taste buds seem to be fried, and she still gets a bit of nausea when she eats. In addition to the fluids they were forcing into her (for the urinary tract thing), the lack of protein in her diet made her swell up, basically, from the waist down, like the bellies on the kids in the World Vision commercials.

Now comes the healing process, we hope. Exercise should clear up the swelling. We’re planning to take her for walks. She’s asking me about food again. (Food that I cook is considerably better tasting than what she gets in the hospital. That’s the sort of thing that could get her eating properly again!)

All in all, if GVH doesn’t flare up, we should continue to be able to say she’s beat the leukemia. True, there are more Chimerism tests coming. But beating a disease like leukemia is very much a kind of miracle in our day. Now that this is behind us, she should gradually be able to heal from all of this.

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.

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?

Waiting, but with much to do in the meantime

We’re still waiting for news on donors, but there’s a lot to do in the meantime.

Beth and I had a really wonderful day yesterday. Sandwiched in and amongst a gynecologist appointment, a blood type-and-cross-match, and a dentist appointment (me), we had lunch together, without any kids (who were in school). We had not done that for a very long time. It was a modest lunch, but it was a lunch together, alone, and it was a rare moment of peace and tranquility for us.

For Beth, there were “abnormal cells” on a pap smear, so her doctor had asked her to come in form more testing. We should hear the results of that in a couple of weeks. (And we remembered, we had been her before). And I’ve got a wisdom tooth that needs to be extracted, and a neighboring tooth that needs a root canal.

Today, Beth needs to have another blood transfusion. Outside of the Vidaza treatments, and seemingly because of them, she’s doing well, physically. But there are pesky, annoying reminders of the leukemia. Her red count continues to fall. Though her other blood levels rise and fall, her red blood counts have only gone in one direction.

And without knowing precisely what is the cause, she had a fairly major headache last night. (I chided her, it’s probably because she ate too much yesterday, but more likely, the headaches are associated with a low hemoglobin count. These come far too frequently, and “they’re excruciating” while they’re here.

So today will be another day of running. Zach’s car is in the shop, so I’ll need to drop my Vampire Bride off at the hospital for her transfusions, then take Zach to work at Best Buy, then drive to work myself, and some time in the afternoon, I’ll sort of have to reverse that process.

For anyone who’s interested, I’ve put up a new page on my Reformation500 site, on the topic of Martin Luther’s “Theology of the Cross”. At this blog, on those days when I’ve written about that topic, my readership numbers are about as low as they ever get. But I want to continue writing on that topic for a number of reasons, and so whenever I do, I’ll make a link available at this site.

Today I’ve written about “The Theology of the Cross and Justification”

What’s the greatest danger? (Part 2)

“Transplant is the only cure”
Once the decision has been made to go with the bone marrow transplant or stem cell transplant, an entirely different set of dangers arises from those faced because of the leukemia. In principle, the existing bone marrow is destroyed, and so the leukemia is destroyed. There is a significant possibility that it will return, but that danger is down the road.

The goal of this transplant is to completely eradicate her old, damaged bone marrow, and to replace it with new healthy and growing marrow that is capable of producing untainted blood cells. There is a great deal of danger in this process. Sometimes it seems to me that this is a case of “the cure is worse than the disease,” except the disease, CMML leukemia, is very bad indeed.

To eliminate the old bone marrow, Mom is going to be put through a regimen of “intense chemotherapy” (and note that the regular old kind of chemotherapy is bad enough for most people), with chemotherapy drugs with names like Fludarabine, Busulfan, and Thymoglobulin. These are still so far down the road that I haven’t yet looked them up. Then there are two day’s exposure to “total body irradiation”.

All of this will occur over a period of 6-8 days prior to the actual “transplant” (which in Mom’s case is then an infusion or a “graft” of stem cells from a non-related donor). In this process, not only is her bone marrow destroyed, but her immune system is destroyed.

For the first 30 days or so after the transplant, there is a danger that the graft will not “engraft”, that is, it will completely reject her system, but that risk is controlled with drugs, and it’s minimal. The larger possibility is that, with her depleted immune system, she will suffer from an infection. It can be bacterial, or viral, or fungal; she will likely develop “mouth sores”, she won’t be able to eat, and she’ll experience nausea, vomiting, and diarrhea. There are dangers of liver and kidney damage, and also pneumonia, which can be a killer.

There are drugs and antibiotics to deal with these. But still, the first 30 days is only the beginning.

When the “graft” becomes “engrafted,” there is a whole new set of dangers. Mom will have no immune system, and in essence, the “graft” will be in charge. The “graft” will have its own immunities, and they will have their way with her. There is a danger that they will reject her, in large and small ways. This is called graft vs host disease (GVH).

True, some of this GVH effect will do a clean-up job on any leftover bone marrow or leukemia from the old regime. In fact, “graft vs host” is what provides some of the magic of this transplant process. It’s often the final nail in the coffin of the leukemia.

Unfortunately, it’s also a killer in its own right. There are two phases: “acute”, while the actual “graft” is still moving around in there, and also “chronic”, beginning at approximately 100 days after the transplant, when the “son of graft” cells are taking over.

In all, the GVH period can last up to a full year or more. Symptoms may be as mild as a skin rash, but GVH can also affect major organs, and I have a friend whose wife died from GVH complications some two years down the road.

The good news is that, if Mom makes it down the road that far, there is an excellent, excellent chance that she will have beaten the leukemia and can look forward to a normal life span. There may be some lingering GVH symptoms – we’ve encountered a couple of people who can’t make tears.

But that’s a relatively minor thing to live with, compared to leukemia.

What’s the greatest danger? (Part 1)

My son John asked me this morning, “what’s the greatest danger that Mom is facing?” That’s a pretty good question, and here is my answer.

The first and greatest danger she faces is the leukemia itself. Mom’s bone marrow is damaged. Given that her damaged bone marrow is producing damaged cells, this is the root problem.

In all of us, our bone marrow produces “baby blood cells” called “blasts”, which then differentiate into the other types of blood cells: red cells, white cells (there are various types of white cells), and platelets.

However, Mom’s damaged marrow produces “blasts” that are damaged within their genes. These genetic damages, or defects, then become reproduced, and the primary symptom of this leukemia is to produce an overabundance of “blasts” which build up in the blood and bone marrow. If enough blasts build up, you get what’s called AML, or “acute myeloid leukemia”. This is the disease they first thought Mom had – with 20% “blasts” in the bone marrow, Mom would have been diagnosed with this.

And one of her earlier pathology reports came back saying “acute myeloid leukemia is indicated”. This is sort of a catch-all category of leukemias, with many sub-classes. Mom’s particular subclass is CMML, or “chronic myelomonocytic leukemia” which is characterized by the excess “blasts” in the bone marrow and blood, but it has its own characteristics as well.

AML may be described as “blasts gone wild” – they simply over-run the blood and marrow and overwhelm the person’s system, causing death.

One key danger is that Mom’s CMML will morph into the more aggressive form of AML. But the CMML, as is, is sufficient to kill her within an average of 12-24 months.

And we’re seeing a little bit of that happen right now. While the disease is being “controlled” with the Vidaza, we see that her blood levels continue to fall, generally (though some of them tend to moderate). But in all, her red blood cells have never moderated at all – they simply continue to fall all the time. And without the many transfusions she’s had, she’d drift off into severe anemia, and eventually, it would overwhelm her.

These are the first and biggest dangers that Mom is facing.

Here we go with the blood again

2011-09-29 Bethany Blood Chart — The latest blood chart. Note the low figures due to the Vidaza

At least what we’re seeing here is nothing out of the ordinary: during a Vidaza cycle, all of Beth’s blood levels get eaten up. Note that her White Blood Cells level on 9/26 is listed as a “critical result” – and the platelets are not far behind, I’m sure.

The good news is that her “blasts” level has been at 0% for a while. That’s fantastic. Also, her neutrophils are back up, and in conjunction with some things called “Bands” (which I have not been showing all along), things could be better but they are still ok.

I wrote to Dr. Rossetti: “Beth has been feeling some of the symptoms of low hemoglobin – tired, body aches, light headed. We thought this might be some of the effects of the Vidaza, (she had her last injections yesterday), but maybe not. All in all, she had a pretty good weekend, despite that she was in the middle of a Vidaza cycle. But we can tell when she’s getting ‘low’ because it’s a big effort for her just to get through taking a shower in the morning.”

He noted that “these types of disorders can be exceedingly difficult to cope with…especially in younger patients”. He also reminded me of both “the magnitude of the disease” and also “the curative goal of transplant.”

That is, she’s going to feel crappy. She’s got leukemia which is eating up her blood. But on the positive side, there is great hope that she can be cured of all this. We just need to sit tight.

A clarification

In light of the relatively good news we had yesterday, which I’ve summarized here, there is a bit of clarification as well.

The real danger, early on, had been that Beth’s leukemia would progress into something more aggressive. But the bone marrow biopsy last week has basically shown that the disease has been controlled and beaten back to some degree.

That’s the good news. The caveat is that all of this is just temporary. We are in a kind of holding pattern. The disease is controlled, it’s not progressing, and Beth’s health is improving, but it is only doing so pending the arrival of a huge milestone, called “the transplant”.

Her bone marrow is still diseased on a genetic level. The Vidaza can’t (doesn’t) work forever; either the body adapts to it, or it stops working at a point. So at some point, her genetically-damaged marrow will continue to put out genetically damaged “blasts”, and in very short order these would again begin to overwhelm her system and possibly put her into aggressive leukemia. That’s just the way this one works.

So we’re waiting to hear from the transplant folks on the status of an acceptable donor, so we can move into the next (“curative”) phase of this. Only the transplant can get rid of her diseased marrow and put her on a path for a normal life.

Our doctor says that we will move ahead with the transplant just as soon as an acceptable donors is selected. I called the transplant coordinator at the hospital yesterday, and of the initial group of “10/10” matches, they are following up with four of them (one international!) to have more testing done. We should know something in a couple of weeks.

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.