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.

One more week in the MSSU

We got the first weekend “off” since Beth began her treatments early in December. She got to stay home Saturday and Sunday, while home health workers (RNs) came to the house and took care of her treatment. It was the first time we didn’t have to pack into the car and head down to West Penn. She’s still got about another week’s worth of MSSU — she still needs to receive another five or six day’s worth of the antibiotic she’s been taking for her MRSA infection. That seems to be the big reason to get down there.

Too, she’s having another bone marrow biopsy tomorrow. From that will come the bone marrow tissue used to do the Chimerism test, which will be our first look at how the “graft” is doing. We have evidence that it’s working because her white blood cell count is way up, but doctors want to see how much of the old bone marrow is left — in theory, it can’t continue to grow or make leukemic blood cells because it should have been “destroyed” in the “conditioning” phase of chemo and radiation. But some of it may be left around. And of course, the “graft-vs-host” effect should be continuing to mop it up.

Generally, I take Beth down there in the mornings, and our oldest son Jeremy has been picking her up.

… and then some …

This seems like one of those avoidable frustrations, that you can’t really say you could have avoided, but at least, it seems that way. I can’t say for sure, but it seems as if Beth will be at West Penn for at least another day. She really enjoyed the Italian Ice they brought her for lunch yesterday. So when I stopped in to visit her last night, I brought her one of those Icee/Slurpee cherry drinks. I think she got too much sugar drinking it, and she ended up having a headache over night. The doctor came in around 3:00 am and checked her over, and ordered a CT scan “just to be sure”. So that may push her catheter removal/replacement back, and also her departure from the hospital.

Another night in the hospital

The last time Beth was in the hospital, I took Dani and Sissy both to see Beth, and with Pastor Matt and me in the room, along with Dr Rossetti and a nurse, it was pretty much a full house, and no one was any worse for the wear. Except that, it’s not policy to allow children under 12 into the room.

Fast forward to today.

My church had given us some gift certificates to purchase items at their second-hand shop called The Common Thread (which is scheduled to close at the end of the month). The Common Thread is just down the hill from the hospital, in Lawrenceville, and so I made plans to drop Dani off at the hospital – the girls were going to have a coloring day – and I would run down the hill to see what I could find.

Well, not long after I got down to the store, I got a couple of calls and messages from Beth – they were asking Dani to leave, and I had to go back up and get her. Beth was heartbroken.

I had picked out a couple of hats for Beth – one she likes very much, and it will be very helpful for when she loses her hair. I got some jackets and pants for my son John (who is just turning 16). And I got some work shirts and a very nice sports jacket for myself.

Dani is extremely close with her mom. The two of them are like momma and baby duck. So it was pretty sad to have to take her home.

Last night, I spent the night in the hospital, and I think I’m going to do the same tonight. I’ve eaten a bit and I’ll grab my bag and go sit with Beth while she gets her chemo. So far, it hasn’t affected her too badly. That is, she’s still complaining about the catheter. The incision is still sore, and the tape pulls on her skin, and it makes her itchy. Likely I’ll grab some sleep in between the nurses running in and out. The older guys are all home tonight. No one else is going anywhere. So I think I’ll finish up some laundry, and head back down to West Penn.

Beth’s donor has signed, and we now have a transplant schedule

I got a call yesterday afternoon from Renee, the transplant coordinator at West Penn. Beth’s donor has signed all the necessary paperwork, and a date of December 14 has been set for the transplant. That means, working backward from that date, the following schedule has been established:

December 5-7: Outpatient treatment at West Penn’s Medical Short Stay unit. Beth will be treated with a drug called Kepivance, the purpose of which is to prevent “mucositis” – mouth sores – one of the more severe side effects of the chemotherapy drugs that Beth will receive. This is an intravenous treatment.

December 8: Beth will be admitted to West Penn’s “T-7” floor – the Hematology/Oncology (or “hem/onc”) unit.

December 8-12: She’ll receive the “intensive” chemotherapy, also called “conditioning”. She’ll receive two or three intravenous drugs spread out over these five days:

Fludarabine: “It has been unofficially and casually referred to as “AIDS in a bottle” amongst healthcare professionals due to its significant immunosuppresive activity”.

Busulfan: “Currently, its main uses are in bone marrow transplantation, … where it is used as a conditioning drug. Busulfan can control tumor burden but cannot prevent transformation or correct cytogenic abnormalities”. To put this into perspective, the Vidaza that Beth was receiving had two functions: it had a cytotoxic effect – it killed things – but it was also supposed to enable her to make her own blood cells (a thing it never did).

Thymoglobulin: I don’t know if Beth is getting this one; it’s on the transplant sheet that Dr Rossetti gave to us, but Renee yesterday said Beth was getting two chemo drugs. Thymoglobulin “very substantially reduces immune competence in patients with normal immune systems”.

December 13-14: Total Body Irradiation (200 cGy).

The donor will undergo five or six days of Neupogen injections “to move stem cells from bone marrow to peripheral blood”. She will then undergo one or two days worth of “collection” – a four- to six-hour process by which blood will be withdrawn from one arm, will flow through a filtering device (similar to a dialysis machine) that will collect only stem cells, and the remaining blood will be re-infused into the other arm.

The stem cells will then be flown into Pittsburgh, where a (we hope) properly-“conditioned” Beth will be awaiting their arrival. The donor is a young female, and she is not from the United States. That’s all we may know about her at this time. I may have mentioned earlier, that we found three “10/10” matches. This is out of 10 million US-based donors, and an international database of seven million donors. For more information on this, see http://www.marrow.org.

It’s interesting to me that they call this procedure a “transplant” – but really, it’s like a slow motion transplant – a damaged organ (in this case, the bone marrow) is removed, slowly, and a new organ, in the form of stem cells, is “transplanted”, albeit slowly.

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.

A tentative transplant schedule

Over the last couple of days, I’ve been going in to work from 5:00 am till 9:00 am, to get in four hours, before leaving to take Beth to her Vidaza treatments and doctor’s appointments. Wednesday and Thursday she will only have Vidaza treatments, so I’m going to continue go in and work very early in the morning, then leave to take her to her treatments, and then drop her off at home and go back to work for the afternoon, to get full days in. We’ve had to do it this way because all of the older guys started school this week, and I’m trying to take off as little time as possible.

One of my greatest fears is the prospect of taking unpaid time off of work, and thus not having an income during the critical time when Beth is most heavily involved in her transplant process. We learned quite a bit about the transplant procedure and schedule yesterday.

First, there are at least five potential donors who matched on 10 of 10 HLA (DNA) categories. Not all of these are ideal simply because of their age (in their 50’s), but they are continuing to search and there may be more of these folks, as well as some 9 of 10 matches that may be more well suited physically. And again, there needs to be some further testing for all of them. (Apparently in one of the more important categories, Beth has a somewhat rare combination of markers).

Beth’s oncologist, <a href=”http://www.wpaci.org/specialists/index.cfm?sh=s&d=348&p=1253″>Dr. James Rossetti</a>, told us that, because of Beth’s <a href=”http://johnbugay.com/2011/08/24/an-important-update-to-the-blood-charts/”>recent progress</a>, we have every reason to expect that she can “move to transplant” as soon as we find a suitable donor.

Here’s the rough transplant schedule when that occurs:

Daily Outpatient treatment (3 days, -9 to -6, treatment with Kepivance)
Inpatient chemo and radiation, (6 days, -6 to -1, Fludarabine, Busulfan and Thymoglobulin, and two days of total body irradiation).
TRANSPLANT (Day zero)
Daily Outpatient – from approximately days +1 to +30. Daily monitoring (five- to 10-hour stays) at <a href=”http://www.wpaci.org/index.cfm”>West Penn Hospital’s</a>Medical Short Stay (MSS) unit. There is also a 75% chance of an infection that will require a readmission.
Days +31 to +100 – twice-weekly office monitoring.

If there is going to be a relapse, it will most likely occur during the first year after transplant. Two years out from the procedure, the chance of a relapse is minimal (just 1% To 2%). And five years out, that risk is almost nonexistent.

Beth has a roughly 15-20% chance of mortality during this process. In the <a href=”http://johnbugay.com/2011/08/23/back-home-from-the-intake-meeting/”> mortality chart provided below</a>, the “immediate complications” include all kinds of infections, as well as acute Graft vs Host (GvH) complications, some of which can be fatal. Some chronic GvH complications can also be fatal, but most are treatable with medications.

The ideal outcome will of course be that Beth can live out a long and healthy life span, with minimal requirements for medications to control GvH symptoms (which can also fade over time).

Early on I told Beth that this was not a disease that she’s temperamentally suited to have. She’s always been more of a person of action: “tell me what to do, and I’ll go and do it.” But there are many uncertainties with this process. Those uncertainties are hard to deal with, but the meetings we had yesterday helped to clear up many questions we’d been having.

Interestingly, Dr. Rossetti is a former Roman Catholic and a convert to Eastern Orthodoxy. We had a bit of a conversation yesterday about church fathers and ancient Rome and T.F. Torrance. Pretty cool.

What’s coming up

We’ve traveled through a relatively uneventful time in this illness. Beth mostly sleeps a lot, and takes in some blood every once in a while. Now we’ve got a little flurry of activity coming up, and we should learn some important things.

Beth’s hemoglobin level fell below the magical 8.5 level, to 8.4, and so she’ll be going in for another transfusion: type-and-cross-match today, and two units on Wednesday. One of the things that I’ve read on the CMML discussion boards is that there is a kind of deep-down body pain that you get – it’s the pain that prevented her from working back in June – and my thought is that 8.5 + two units will take her to a point at which she won’t have to deal with that for a while.

Then next Monday, August 22, she’ll begin Vidaza Cycle 3, and on the 23rd we’ll have our big Intake Meeting with Dr. James Rossetti from West Penn Hospital. (West Penn is an MDS Center of Excellence ).

We should find out a number of things that day, not least of which will be the status of the donor search, the course of treatment, schedules, and various other odds and ends, I’m sure.

We can still use your help. Please feel free to use the buttons below to like and share these blog posts of mine, and also, be sure to like and share Bethany’s Facebook page and don’t forget we need your help financially as well. Thank you.