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.

I counted 21

Beth does not yet have a “central line”, and she hasn’t wanted to get one, because when they do the transplant, they’ll have to put a new one in anyway.

So when Beth has blood taken, they have to use a vein in her arm. As a result of the twice-weekly blood draws, plus all the transfusions, not to mention the Vidaza shots and IVs, she is pretty bruised up.

So the nurse is now looking for an IV specialist, to find a good vein.

We are now scheduling the “pre-testing”

We got a call yesterday from the Transplant Coordinator – they want to have Beth come in now for some “pre-testing” – they want to check her heart, lungs, have another bone marrow biopsy. Since we have a regularly-scheduled appointment with Dr. Rossetti on Monday, we’re looking at going in and having some of this done on each of the next two Mondays.

Beth is about half-way through her sixth cycle of Vidaza – they always seem to kick her butt. The way things are going, this could be the last one. No word yet from the Donor. We may hear something Monday.

Yesterday: The VA and Vidaza

Yesterday Beth and I spent much of the day down at the VA office in Oakland, before heading out to Dr. Jalil’s for a consultation and to begin her sixth cycle of Vidaza. We honestly didn’t know what to expect – it was her first “doctor’s visit” there. Her primary care physician is a young female doctor who has a great deal of respect for veterans, and she did a pretty thorough “history” on Beth. I appreciated her concern.

We also filed a claim for disability benefits through the VA. We heard from another individual who was standing in line that it can take up to a year simply to process the application. The actual VA benefits counselor we spoke with told us it would be six or seven months – within two months, we should receive acknowledgement that they have received it.

Beth also began her 6th Vidaza cycle. Dr. Jalil was generally encouraged by how she was doing. Note that her white blood cells were at their lowest point that I’ve seen them (1.1) – but also that her hemoglobin, which was raised into the nine-point-something range with four transfusions, actually increased a bit last week (to 9.5). That was a very rare “increase” in her hemoglobin level.

  11/1 11/3 11/10 11/14
White Cells (4.4)  1.48 1.51 1.31 1.1
Hemoglobin (12.5)  9.2 9.1 9.5 9.1
Platelets (145)  59 86 116 88

(Numbers in parentheses represent the minimum “normal” figure. For previous blood counts, see this chart.)

Finally, I’ve put up a new theological blog post, which I’ve entitled “The Roman Catholic Hermeneutic”.  When Catholics and Protestants approach a given topic in Scripture or in history, they approach it in different ways. And it’s this difference, often unspoken, that often renders the subsequent discussions so difficult, if not maddening. You’ll hear things like “You have your interpretation, I have mine”. But what are these “interpretations” based upon? I briefly cite a Protestant scholar and a number of Roman Catholic scholars, and some popes, on how Roman Catholics use the Scriptures. It’s eye opening.

Admitted to the hospital

Beth has been admitted to the hospital, probably just for an overnight stay, but she’s got some things going on and they probably want to observe her.

Most annoying are the skin lesions, “abscesses” she’s got in her face and a couple of other areas of her body. These are, just as the definition says, “a collection of pus (dead neutrophils) that has accumulated in a cavity formed by the tissue in which the pus resides due to an infectious process…”. Her white blood cell count (and neutrophils are among these) is very low, they want to give her some intravenous antibiotics for them.

Otherwise, she’s in day six of a seven-day cycle of Vidaza, and her red blood cell count is down to 6.2 (the magic number is 8.5), so she’s going to need a couple of transfusions.

Zach took her down to the hospital this morning and has been with her all day. I’ve just gotten home, made sure the kids had something to eat, and now I’m headed down to the hospital.

The good news is that, once we have the transplant, this whole set of problems changes into something else…

Hollow bones, thin blood

Beth is in quite a bit of pain lately, and while I can’t comment on it from a medical perspective, it seems as if she is indeed suffering from “hollow bones and thin blood”.

Her most recent bone marrow biopsy said the cellular matter in her marrow was down to 20% (for normal folks, it’s 50%), and her primary blood levels – hemoglobin, white blood cells, and platelets, continue to fall and hover at low levels. On her most recent blood chart, her white blood cells are a “critical low”.

The Vidaza she is taking is a form of chemotherapy that has two functions: a cytotoxic effect, which just simply kills bad (and good) cells, and a genetic component, which is supposed to allow some of the “undifferentiated” blast cells (baby blood cells) to “grow up” and differentiate into the kinds of cells they are supposed to be. The first effect continues to work – she feels terrible – but I think that, because her brand of leukemia is so rare, the Vidaza doesn’t quite touch on the genes that enable these blast cells to differentiate normally.

So the net effect is that she is receiving a light version of a chemotherapy (which is working), but with none of the good effects.

And the overall effect is that the various pressures in her body are causing pain, “way deep down” as she says, in her bones.

The good news is that we now have one individual who qualifies on the DNA (10 of 10 matches on HLA markers) scale to be a donor, and who has agreed to do it. There are two more people who are 10/10 matches who are undergoing final testing, and we may hear from them this week.

Please keep us in your prayers.

A bit of a rough day yesterday

We had a bit of a rough day yesterday. In the morning, we took a drive down to the VA hospital. Even though Beth is being treated through private medical insurance through my company, she needs to “get into the VA system”. We’ve already applied for, and she has been approved, to receive at least some medical coverage.

But the thing we are really looking for – “disability” benefits, are going to take a whole separate process. Which involves Beth actually making an appointment with a primary care physician within the VA system. All I’ll say at this point is that we got that process started.

Then we had an appointment with Dr. Jalil, in association with another round of Vidaza. This is the fifth round of Vidaza, and, while Beth’s disease is controlled and her level of “blasts” down to 5%, we haven’t seen that corresponding elevation of some of her other blood levels.

And so, two weeks ago, Beth needed yet another transfusion; we got a call last week, her white blood cells were at a “critical low” level (at 1.9); platelets were bumping along below 100. Her lymphocyte% and monocyte% are also high.

For the last two cycles, too, Beth has been receiving Vidaza injections instead of intravenously. That’s rough at the point of injection the area becomes bruised, then it swells and the skin peels (like a sunburn). It’s supposed to take less time than the IV, which takes about an hour. Still, because of various inefficiencies, we ended up having to spend about three hours at the doctor’s office yesterday.

Colds and Flu Season

Our son Zach brought something home the other day that involved having the body aches and a slight fever. After Beth’s recent blood test, they called us to let her know that her white blood cell count was down to 1.7 – that’s the lowest I’ve seen it.

White blood cells are the ones that help you fight infections, and so, now Beth has got the body aches and feels a cold coming on. This week, too, is going to be another Vidaza week. With the news of the donor, Beth has generally been in good spirits, and with the blood transfusion about a week ago, she’s been feeling pretty good as well. So with all of this going on, it’s likely she won’t be feeling so well this week.

City Reformed Presbyterian Church

I just received a copy of the City Reformed Membership Letter for this month, and I saw that my family and this blog are mentioned, concerning my wife’s illness. So I thought I’d take a few minutes to give a brief overview of my wife’s condition and the needs that Pastor Matt was speaking about.

In June of this year, my wife Bethany was admitted to the hospital with an extremely low hemoglobin level – it was 5.7, when a normal level is about 12-15 g/dL. She underwent extensive testing and a bone marrow biopsy – there are many things that cause this type of severe anemia, but the biopsy came back positive. It took a while to come up with a definitive diagnosis, but what came back was “chronic myelomonocytic leukemia” (CMML), a very rare form of the disease that shares both “myelodysplastic” and “myeloproliferative” (MDS/MPD) characteristics.

A larger version of that process may be found here.

CMML, as a disease, is primarily something that older people get (median age is something like 74), usually as a result of a treatment from a prior cancer. Probably as a function of that, the prognosis is not for a long life (12-24 months).There is more information about CMML here for anyone who is interested.

Beth has so far received four “cycles” of a drug called Vidaza, which is part chemotherapy, and part therapeutic. It has the ability to “interfere with the leukemia process” and actually enable her body to return to somewhat normal blood levels. This hasn’t happened in Beth’s case, and she’s had to have numerous blood transfusions to bring her hemoglobin level back to tolerable levels. I have tagged entries about this under the tag Vampire Bride.

According to the medical information that’s available, “Bone marrow or stem cell transplantation appears to be the only current treatment that alters the natural history of CMML.” Interestingly, the brother of Dave Faith, an elder at City Reformed, went through this procedure several years ago and is doing fine.

Currently, my understanding is that the process of finding a donor is fairly far along, and there are four potential donors who are undergoing a final type of screening. (For anyone interested in this process, please visit http://www.marrow.org for more information). Once a donor is selected, we should begin the transplant process within the next six weeks or so.

I mentioned above that this is something that older people get. Beth was diagnosed at age 50 – she served in the Iraq War and was “in country” from April through September of 2003. A number of Iraq War veterans have come down with leukemia, and we believe that she was exposed to benzene, a known carcinogen, or other cancer-causing agents during her service at that time. Beth was recently featured in an article about this in the Pittsburgh Tribune-Review.

* * *

The City Reformed membership letter mentioned several of our needs. Our financial needs are summarized under the “Donate” button in the right hand column. As well, once Beth begins the transplant process, she will be a full-time inpatient at West Penn hospital for a week or two, and for the first 30 days after that, we will need to make daily trips to West Penn’s “Short Stay” (daily outpatient) unit.

Given the commute schedule (I’m going to try to get to work as often as is possible during this time, with an eye on our finances). During that time, we may need some help with the daily commutes, one way or another. But at this point, I don’t have any idea what that will involve.

We’ve also been approached about having meals prepared for us, and I believe that will be very helpful to us once we enter into the transplant schedule.

I want to say that we all are tremendously grateful to be a part of the City Reformed congregation. The response from Matt and the deacons, as well as other folks we know, has been overwhelming. We are most grateful for your prayers and concern and help during this very difficult time.

Sincerely,
John and Bethany Bugay

Please note: the “Chicken” entry nearby was a spoof of an academic research paper and presentation, and is in no wise representative of the other materials at this blog. 🙂