Tag: vampire bride

I was laid off again yesterday

And today, as they say, is the first day of the rest of my life, again.

Most recently, I was unemployed roughly from June 2009 through February 2010. That was a difficult time to be unemployed. The economy was a wreck, and would remain so for a couple more years. (Some will say it’s not much better, and that’s true).

I’m up early for the day – it’s about 1:50 am as I write. I hardly know where to begin. I’m thinking “Dun & Bradstreet” lists; I’m thinking “Eloqua” – I’m tagging this post “Eloqua” because I consider that to be the primary job skill I’ve picked up in the last few years. My hope is that it’s not an insignificant one.

Eloqua is “database marketing” and “marketing automation” rolled into one. I’m a member at http://www.ritesite.com – which I haven’t used for a while. I’ve been told “LinkedIn” is now a fabulous resource. I’m going to check it out. My hope is to morph this site into a job search site. Whatever that means.

For those of you who have come here, looking for news about my wife and her struggle with CMML leukemia, I guess you could say “no news is good news”. There is no sign of the recurrence of the disease. There are some annoying things going on.

For a while I had a series called “Vampire Bride”. She was getting blood transfusions on a fairly regular basis. As it turns out, with blood transfusions, iron accumulates in your body, and it can be damaging over time. So now they are “bleeding” her – taking a pint of blood out each week, (and I think they need to do this eight times), because the iron levels in her blood are too high. (What about “Geritol”?)

Plus, her immune system is brand new. So she has NO immunities built up. And so, she has managed to catch virtually every cold and bug that has come down the pike this winter.

Very high on my list of concerns will be to provide health care coverage for her. She’s a veteran, and she’s in the VA system, but moving to the VA system would force her to lose her current medical team – Dr Rossetti, Dr Jalil, and their whole group at West Penn Hospital. They saved her life, literally, and Beth is still in need of this ongoing type of treatment. They are familiar with her case. My hope would be to see it through.

On my end, it’s a whole different world. Eloqua is a whole new “job skill”. “Marketing automation” is a whole new world. The world of “social media” is completely new, since the last time I looked for a job.

For now, “job-one” is to craft a quasi-kind of plan, which can go out the door once the bullets start flying.

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…

Vampire Bride III in earnest today

A couple of days ago, we thought Beth might go in for another blood transfusion, but that didn’t quite work out. Today I’m planning to take her in for a couple of units. As I mentioned yesterday, her cut-off point is a hemoglobin level of 8.5. She’s getting this transfusion because she’s at 8.4. She got her last transfusions at 6.9; maybe these today will bring her up to a level of “refreshing” that she hasn’t experienced for quite some time. Just in time for Vidaza next week.

Yesterday I met with my pastor, Matt, and some deacons from the church. They are so incredibly gracious. It is a tremendous blessing to be a part of such a community.

“Vampire Bride”

Beth is in a “pre-conditioning” phase at this point. She had her first round of Vidaza, a low-intensity, genetic-based chemotherapy, from June 25-29 (five days). She gets three weeks off from that, then begins another round July 25. The doctors have told us that she will undergo either “two or three cycles” of Vidaza. At that point, we think, she will be ready for “conditioning” – the really hard stuff, which I’ve seen described as “intensive chemotherapy and full-body radiation”, the intent of which is to kill as much of the disease as possible, followed by the “bone marrow transplant.”

(I keep putting that in “quotes” because it’s not really “bone marrow” that gets transplanted, it’s stem cells from the blood of either an anonymous adult donor or blood from umbilical cords.)

She actually worked last night and has plans to be working each of the next seven nights – she’s keeping an obligation she made several months ago to cover for a friend who was going on vacation. Her nurse said that’s a good way to keep her mind focused on something other than her illness.

Physically, she seems to be tired a good bit, and she tends to get discouraged a lot. That said, she seems to be responding well to the first round of treatment.

The MDS mostly affects pre-blood cells called “blasts”. These “blast” cells are like primordial blood cells – in healthy people, they “grow up” and differentiate into red blood cells, white blood cells, and platelets. The cancer process somehow prevents these “blasts” from growing up. They remain as blasts, and they remain in the bone marrow, where they continue to “gum up the works”.

So as her red and white blood cells die off (and they do in all of us), they are not replaced. Whether the diagnosis is MDS or a more aggressive form of leukemia really depends on the speed at which this process occurs. But my understanding is that it is the same process.

They treat symptoms of tiredness with blood transfusions, and they watch her hemoglobin levels closely. Let me give you an example: she also worked last weekend (Friday, Saturday and Sunday nights). Last Thursday, her blood level was down to 8.2 (normal is 12-15) – this makes her feel crappy, and is low enough for her to require a transfusion (I think if it falls below 8.5 they want to give her blood).

Because it was a holiday weekend, there wasn’t enough time to make arrangements for her to get her transfusion. (Two pints of blood – it takes about 6 or hours for that entire process.) So she worked all weekend, and had her blood tests again on Tuesday. The good news is that her blood level stayed at 8.2. (That is, with all the hard work, and all the dying off of red blood cells, and she still managed to keep her level. That indicates that the Vidaza is enabling her body to produce its own blood cells.)

We did manage to get her to the hospital on Wednesday this week for her two-pint transfusion. I was calling her my “vampire bride”.

But the hard part is yet to come.