Conscious sedation and “the disease process”

It was a day of mixed emotions at the hospital yesterday. Beth said that the bone marrow biopsy was “the best ever” – essentially pain-free and she doesn’t remember a thing. The “conscious sedation” apparently knocked her out instantly.

On the down side, Beth’s hemoglobin numbers continue to fall – she fell below the magical 8.5 level, and she needed to get a couple more blood transfusions. If you’ve been reading at all, you know we’ve been keeping a pretty close watch on the “blood charts”, and there was a new number yesterday: LDH.

LDH stands for lactate dehydrogenase and the LDH test [oddly enough] measures the amount of LDH in the blood. Beth’s number was 621, and the normal range indicated on the lab test was 100-216. We didn’t recall seeing that number before, and quite naturally, we were alarmed.

“What does that mean?” we asked the nurse.

Immediately she said, “that’s the disease process”. And she frequently works with transplant patients, and so she knows what she’s talking about.

According to the NIH link, above, it could indicate many things, including “new abnormal tissue formation (usually cancer)” or “tissue death”. None of the things it indicates seems to be good.

She had been kind enough to get this chart for her in the first place (I ask everyone I can about getting these charts), and she was also kind enough to get us some additional information on it. We emailed Dr. Rossetti, and he said, “The LDH is somewhat non-specific. It could mean recovery after the last cycle or could suggest disease. The [information from the bone] marrow [biopsy today] will indeed give us the answer.” So we will know something more definite when we get the results from the biopsy.

Comparing LDH readings, June and September

Now, when we got home, we went back and looked at some past blood charts, and that number had been measured, during her first stay at West Penn, back in June. The number at the time was 549. So, given that she has leukemia, it doesn’t seem out of the ordinary that this number would be so high. What is still a bit distressing is that it seems to be going the wrong way.

But we should know more about it in a few days.

Bone marrow biopsy today and other news

Today Beth has another bone marrow biopsy. Dr. Rossetti says this is just simply a matter of routine. The timing of it leads me to believe also that it will provide information that will help in some way as they select a marrow donor. We should know more about the donor selection, too.

In all, things should be moving into the next phase quickly, I would think. The most difficult thing about all this is the waiting. But of course, it is going to be a long haul, and we’re going to end up doing a lot of waiting.

We are due to be at West Penn at 8:00 am, which means leaving here around 7:00 am. “Nothing by mouth past midnight”. They are going to do this in the recovery room of the West Penn short stay unit, and instead of having the biopsy with just a local anesthetic, which did not seem to help her much with the pain last time, she’ll be under “conscious sedation”. Beth will be taken in at 10:00 am for the biopsy. I will probably miss a whole day at work.

Not long after I sent out my news release, we were contacted by Bill Zlatos, a reporter from the Pittsburgh Tribune Review. Bill has been talking with Beth quite extensively over the last couple of weeks, and he’s planning to do a fairly significant story on her, her military experience, and of course, the notorious burn pits.

The Trib has already run a few photos, including Beth and Dani here, and Beth and me at a recent Vidaza session. But there’s more to come.

Finally, I’m continuing my series on Martin Luther’s Theology of the Cross both at Triablogue and at my own Reformation500 blog.

The week ahead

Beth had a good weekend – she seemed to be feeling pretty good and even energetic, although we limited our activities to TV, reading, and church. We’re noticing a pattern. On the weeks when Beth is getting her Vidaza treatment, and the following week, she is tired, wrung-out, achy, and her blood levels seem to go down. We don’t have any blood numbers for the most recent week (week 3 of the cycle), but she seemed to feel better this past weekend.

Wednesday we’re going to go down to the VA to get a photograph for Beth’s ID card, and then we’ll head out to West Penn hospital for another bone marrow biopsy. We’ve been told by the doctor that it is “a matter of routine” to have one of these after three or four rounds of Vidaza. “This way we have a better sense of how things are progressing.” He also says, “Based on the counts, I suspect we are in a good place.”

Beth has had two such operations, and both have been painful for her. After all, they are breaking into a bone. The doctor also says she will be able to do this procedure “under conscious sedation” – which will help ease the pain for her, moreso than just the local anesthesia she received the last two times.

How we got here, Part 1

Now that summer has come and gone, I’d like to recount what kind of what summer it’s been for us. It’s been almost exactly three months since all of this started, and we’ve not yet begun to fight. Literally. For all that Beth has been through, the hard part still lies ahead of us.

Of course, hearing that you have cancer, in itself, is an incredible shock. And it was unexpected.

It started Sunday, June 5. For a little over a year, I’d been working days at Black Box, and Beth working full-time nights, so that we could share our one car, try to pay off some bills, and at least one of us could be home to get our youngest daughter, Dani (6) on the school bus in the morning. Typically, I’d start getting her ready; Beth would get home at 8:00, and I’d leave for work. Then she’d finish getting Dani ready for the bus at 8:30.

We had been doing this for months. But we’ve needed to do it; I had been laid off in the recession in 2009, and had spent about eight months unemployed. I took my job at Black Box at about 2/3 of my old salary, just to have a job, and one with the hopes of moving up. And Beth had been working nights, first at Sheetz, and later at Overlook Green. Over the past several months, they’d made her a shift supervisor, and she liked the work.

“Critically low”
But over the previous several months, Beth had been coming home more tired than usual, and having more headaches. On this Sunday morning, she came home and went right to bed. That afternoon, she was complaining that she couldn’t go to work. Headache, body aches, swelling of the legs. She called off, which was almost unheard of for her. Her boss said, “why don’t you go to MedExpress and get yourself checked?” So we did.

The Nurse Practitioner on duty that night checked her over, and came back in and said, “you need to have some tests tonight that I can’t give you. I’m going to send you up to the Emergency Room”. So we went up there and waited among the kids crying and broken arms and old people. When they brought her in, and took some tests, they came back and said, “your hemoglobin level is dangerously low. We need to give you some blood transfusions, and admit you for some further tests.”

Her hemoglobin level was 5.7, critically low; the normal range is 12-15. One of the nurses told us that if she had cut herself and bled out to that level, she’d be unconscious. But because she dropped slowly to that level, her body gradually adapted to it.

The Bone Marrow Biopsy
She got three units of whole blood over the next couple of days, and among the tests was a bone marrow biopsy. We could tell that this wasn’t a typical test, because Dr. Jalil, the blood doctor who came in to do the biopsy, had to wait around for some 20 minutes in our room, chit-chatting about little things, because the hospital did not have the right kind of needle on hand.

A bone marrow biopsy is not the kind of thing you want to go through. A long, thick needle is inserted into the buttocks at the hip bone to deliver a local anesthesia; once removed, a longer, thicker tool is inserted and screwed into the bone; a syringe is then attached to this longer tool, and marrow and fluid are suctioned out. It’s quite painful, in spite of the local anesthetic, and like any broken bone, it takes a good bit of time to heal.

After all the tests that had been done, and once the bone marrow biopsy was headed for the lab, Dr. Jalil said he thought that it was most likely a viral infection causing her severe anemia.

As we left it, we thought we were going to hear the results of this test from Dr. Jalil; we had also scheduled an appointment with our GP. Since we heard nothing from Dr. Jalil, and thinking “no news is good news,” we were almost in a giddy mood seeing our GP. On the other hand, he was under the impression that we’d have heard the diagnosis from Dr. Jalil, and so when he said “blood cancer,” it was awkward for him and an incredible shock to us.

He gave us a copy of the lab results, which said that “Acute Myeloid Leukemia (AML) is indicated.”

Learning About Leukemia
There are four types of these “blood cancers”: chronic and acute myeloid leukemia, and chronic and acute lymphoma. Of course, these are just terms that set the four types in contrast with each other, for the purpose of categorization; there are really a bunch of different types of these, with a broad range of things that can go wrong.

In the particular “group” of leukemias that Beth has, AML, is a very nasty one. The preliminary diagnosis was for a “pre-” version of this, one of the “myelodysplastic syndromes” (MDS), and we were scheduled to see yet another specialist, Dr. James Rossetti from West Penn hospital.

He told us that the diagnosis pretty clear about “what” it was but somewhat inconclusive on the severity continuum. There is a “risk factor” chart called the IPSS chart, and Beth was either at a “high” risk level (the highest of the four) for developing AML, or she actually had gotten it. Dr. Rossetti did another bone marrow biopsy, and admitted her to the hospital for yet further testing.

A Diagnosis of CMML
What came back was something called CMML, or chronic myelomonocytic leukemia. Briefly:

In CMML, the body tells too many bone marrow stem cells to develop into two types of white blood cells called myelocytes and monocytes. Some of these bone marrow stem cells never become mature white blood cells. These immature white blood cells, called blasts, are unable to do their usual work. Over time, the myelocytes, monocytes, and blasts crowd out the red blood cells and platelets in the bone marrow. When this happens, infection, anemia, or easy bleeding may occur.

More specifically, Beth has “dysplastic CMML-2”, which is not as bad as having the “myeloproliferative” version of CMML, but it is not a good thing; I’ve published the prognoses both from the medical journals that I could find online, and also from Dr. Rossetti.

Much of what I’ve written over the last several months is a chronicle of what I’ve learned, and how I’ve learned it. As I said, all of this is just the beginning. The hard part is yet to come.