My (lack of) online presence and how Beth is doing

A couple of people have mentioned to me now that they haven’t seen me online for a while, and they were wondering what was happening with Beth. I have to say, almost nothing was happening, except that she was getting a tiny bit better each day – imperceptibly, almost – and it almost seemed like there was no news to report each day. I guess healing is like that: nothing seems to be happening, and then one day you feel just a little bit better.

Things are improving with her, on most fronts, though slowly. Her BK virus (urinary tract infection) has finally settled down. For this one, there was no drug treatment, but it simply needed to be flushed out. Apparently it was, though it took three weeks-worth of major urinary-tract discomfort. The numbers on her CMV virus seem to be way down, too. (She had been receiving Ganciclovir for this. It was a real danger, and the numbers came in slowly, but they came down). The clot in her arm is still there, but it will likely take two or three months to go away. She is getting a drug treatment to make sure another one doesn’t form. (This is a tricky proposition, because her platelets are low as it is, and the drug that prevents clots is a blood thinner. So she has received some platelets, in addition to the drug treatment). However, the swelling is noticeably down in her arm and her legs, though it is still troublesome.

On top of all these things, the doctors have started her on a physical therapy (PT) regimen, which has her walking, exercising, and gently massaging her arm to try and further relieve the swelling. The walking, they are sure, will help the fluids in her legs to be further reduced. She still isn’t eating right (a factor which contributed to the swelling), but there is another story behind that.

The chemotherapy did a number on her taste buds. So food always still tastes bad. In an attempt to try to get her to eat some protein, I bought her a Quarter Pounder with Cheese. She said she was genuinely hungry for this. So I brought her one, and she ate a few bites. She couldn’t eat more than that, so I ate the rest. After I left the hospital that night, she threw up and started having bad cramps. So now they are checking to see that the GVHD hasn’t moved into her gastrointestinal (GI) tract. (GVHD affects you in three specific areas: skin, GI tract, and liver). My thought is that it was just the Quarter Pounder after her not having eaten anything solid for a while. But they want to be sure.

* * *

Yesterday I made chicken soup (Dad’s famous chicken soup – one of the few things I make that everyone in the house loves). I took a thermos-full of hot fresh soup down to Beth in the hospital, and she absolutely loved it. So I froze a bunch of it in small containers, and I’ll take more down to her later today.

I’ve continued to make almost daily trips to the hospital through these last three weeks while she’s been in, though I haven’t taken time off work as I did for the transplant. This seemed less serious, although, at times, it wasn’t. The viral infections could have been life-threatening complications.

Things are busy at work. And to spin the old saying, “when your wife is on her deathbed, nobody wishes they’d spent more time at the office”. But as bad as she felt, she wasn’t on her deathbed; and we still have to pay the bills. We’re continuing to get a tremendous amount of help from our church (which we don’t want to have to rely on), and some financial donations are coming in. But life will go on, and do not want to continue to be dependent on that kind of help. We need also to focus on being financially responsible in the months and years ahead (whatever happens). So in addition to working, and even working at home (I’m working with a “cloud-based” “marketing automation” program called Eloqua; it’s got quite a lot of capabilities, and in part I’m learning them, in part I’m using them, and in part I’m playing administrator), I’ve been doing quite a bit of running between places.

In addition to that, though, I’ve spent a lot of time in the last month collecting information and submitting it to both Social Security and the VA – Beth will qualify for Social Security disability (I believe); we are less hopeful that the military will consider her illness to be “service related” (although I suppose it is possible, and we intend to keep pressing this issue).

It’s Saturday; since Beth is not tied to the toilet, I can take the kids down to the hospital, and we can all sit and visit in the waiting area, without having to worry about sneaking Dani in. Hopefully, we’ll be there with soup.

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.

Veterans Administration Burn Pits Study is Inconclusive

Beth again featured in article on VA study on Burn PitsA study on the long-term effects of burn pits on the health of soldiers returning from Iraq and Afghanistan has come back “inconclusive”. This is a study that we had hoped would have provided the VA with guidelines enabling Beth to receive disability compensation through the VA. She hasn’t been able to work for five months, and with the upcoming bone marrow transplant procedure, she’ll most likely continue to be out of work for many more months.

Beth qualifies for health care benefits through the VA, but having this illness rated as a “service-related” illness would have ramifications in case Beth does not survive this procedure (according to her doctor, she has “less than a 50 percent chance of recovery” because of immediate and longer-term effects, though this is “the only curative option” for the type of leukemia that she has), in the form of disability benefits now, and survivor benefits for the kids and me.

We have a scheduled intake appointment in a few weeks with the VA. Beth is already receiving very good care for this illness through my employer’s health care benefits. We are very near to the point at which we can select a donor for a potential bone marrow transplant procedure, which “the only curative option” for her.

Last week, she spent most of the week in the hospital, receiving IV antibiotics treatments for infections related to her impaired immunities. All of her blood levels – hemoglobin, white blood cells, and platelets, are at low and critically low levels from Vidaza treatments she is receiving. So far, three individuals have qualified as stem cell donors. We’re hoping to select a donor this week and establish a schedule for a transplant.

We’ve continued to try to raise money. We’ve set up a Facebook-based fundraising tool, which you can easily send, share on your own page, like, or tweet, and we hope you would help us with this in any way you can.

We’re also receiving a great deal of help and care from our church, and other sources.

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.

Bethany featured in Trib article on burn pits

Bethany was featured in an article this morning on the burn pits that have been standard operating procedure for getting rid of waste in war zones by the U.S. military for the last decade. Soldiers who have been in the vicinity of these burn pits have come down with all sorts of illnesses, including leukemia.

The comparison is made for these “burn pits” as being something like the “Agent Orange” of this generation of soldiers. There is in fact an extensive class action lawsuit being filed not against the military (whose standard policy this is), but against Kellogg, Brown, & Root and Halliburton, the government contractors which became responsible for operating the burn pits. (I don’t believe my wife will be eligible to be part of the lawsuit; she was in Iraq from April-October 2003, which was prior to Halliburton’s arrival there). But as the article notes:

The Department of Veterans Affairs has commissioned the Institute of Medicine to conduct a study for release this fall to determine whether Bugay’s cancer and the illnesses of perhaps thousands of other veterans of Iraq and Afghanistan are linked to exposure to the burn pits. If so, that would make them eligible for disability benefits from the VA. About 2.2 million members of the military have served in Iraq and Afghanistan since 9/11.

There are more photos here showing showing some of Bethany’s service, and her exposure to the burn pits; I’ve outlined her illness and treatment in recent blog posts.

Click here to go to the article

Three reasons why I’m writing this journal

1. We want to persuade the press, the VA, the military, the federal government, that there are consequences to the military’s policies. Even the little ones.

  • In March 2003 Bethany completed the Army’s “Field Sanitation Course” (see image below).
  • In May 2003, especially, when Beth was part of an advance group, she was heavily involved with “burning trash and human waste”, shown in the photos below.
  • She wrote about it in a letter dated March 14, the scan of the hand-written page.
  • This activity, “burning diesel fuel” is known to produce the chemical Benzene.
  • Benzene is a known human carcinogen. And, being directly involved with this activity, Bethany was heavily exposed to the benzene that was produced.
  • Thus, we hope to persuade that, because of the U.S. Army’s official policies, Bethany was exposed to Benzene in large enough quantities that it is clearly identifiable that these incidents are the cause of her current cancer (leukemia), as well as similar ailments in other soldiers who have served in Iraq and Afghanistan.

2. Beyond persuading the official parties listed above of the sequence of events listed above, we hope to reach a wide and sympathetic audience, and persuade them that we continue to need financial help as we work through this time in preparation of a bone marrow transplant.

3. We want to tell a compelling story of a family’s struggles through this past decade when it was said that “9/11 changed everything.”

Beth was trained for "burn pit" activity
Burning trash and human waste
Describing the activity in a letter, dated May 14, 2003

More photos are here:
http://www.facebook.com/BethanyBugay

Please share this information. Hover over the “share” button just below this paragraph. You’ll see the various ways in which you can share this message with others. If anyone knows of other soldiers who have come down with leukemia because of burn pit activities, we’d love to know that story. We’d love the opportunity to put our voices together and tell a larger story. We’d love to make certain that this story gets the kind of publicity that it deserves.

It’s going to be a busy week

It’s going to be a busy week for us. Beth has a doctor’s appointment today and our big “intake meeting” with the transplant folks tomorrow. I expect that we’ll learn what treatment is going to be like for the coming months, the status or our donor search, maybe get some clarifications on the diagnosis and prognosis, and a lot more. Meanwhile, Beth begins Vidaza, Cycle 3 this week as well.

Beth had a pretty good weekend; we visited my cousin Walt, who is also a veteran; he recently had heart bypass surgery, and he gave us a pretty good report about how to navigate the VA system. There’s one difference: he’s a Vietnam veteran, and much of what the VA will cover from that conflict is settled; we are still waiting on a study by the VA on the topic of the “Long-term Health Consequences of Exposure to Burn Pits in Iraq and Afghanistan”. Stay tuned.

The car situation is going to be much complicated from here out, as the older guys start school today; two of them will begin the CCAC Nursing School program, and a third is starting general studies there as well. There are five of us going different places, and three cars. The younger kids start school next week. Fortunately, recent changes in the school bus schedules don’t seem to have affected us.