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.

11 thoughts on “How we got here, Part 1

  1. John – Keep posting. It helps remind me to pray for Beth, you and the brood. I also just read Trueman’s paper on the Theology of the Cross. Really good stuff, and having experienced my wife’s breast cancer have a full measure greater understanding of being blessed through suffering.

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  5. I have the myeloprliferative type of CMML1. I have been recieving Decitabine for 10 months and am responding very well. Blasts are less than one percent and hemoglobin is 11.7 – not quite normal, but good, white cells are 4.2. The doctors won’t discuss treament options with me, just tell me I need a stem cell transplant.
    when I was at Mayo clinic they told me I could stay on chemo until it didn’t work any more (they did not recommend it) or get a stem cell transplant. And that since Mayo was a 12 hour drive from home that I should go to the University of Michigan hospital ( 90 minutes from home). U of M says I must get transplant. Gave me papers to sign after they found a 10 out of 10 match saying I understand it is not a cure, could cause death, cardiac failure, kidney failure, relapse or new cancer, and a host of GVHD. Gee an unknown number of months where I feel good with chemo until it doesn’t work verses a SCT where you are very sick for a few weeks from the chemo, then will still relapse or die anyhow is sounding better all the time.
    Has anyone out there had a SCT and lived more than a year or two?

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  6. Hi Marcia — Ironically, we are now at West Penn hospital. My wife is getting some “pre-testing” for a bone marrow transplant (or stem cell transplant). — she has had the experience you are having — she’s been on Vidaza for six months, and feeling “ok”. But her blood levels continue to drop, and I can tell she’s deteriorating. Her hemoglobin runs around 9, but drops into the 7 and 6 range. White cells are down to 1.1.

    Our understanding is that the bone marrow transplant is the only “curative” option. And we are moving ahead, with the understanding that it is a very dangerous procedure. But in spite of the dangers, living with the CMML has an even worse outcome.

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  7. Hi john,
    My brother in law was diagnosed with cmml 2 this last week. They are going to start looking for a donar. How is your wife? How are you making you decision on which facility to do your stem cell transplant? Thanks.

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  8. Hi Debbie, my wife is doing well. She had her transplant on December 14. She faced some complications, but came through them well. As far as the facility, we live in Pittsburgh, so we worked with West Penn Hospital’s Bone Marrow Transplant physicians. This blog goes into quite a bit of detail of the whole process, so I’d invite you to continue to look through the postings. I’ll also be happy to correspond with you via email. Contact me at johnbugay@gmail.com

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  9. What exactly seriously encouraged you to compose
    “How we got here, Part 1 John Bugay, an integrated life”?
    I reallytruly adored the blog post! Thanks for the post ,Kristal

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