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.

Yesterday’s Doctor Visit

“You’re really looking stellar”, Dr Rossetti said to her. And she was very happy to be feeling as well as she was feeling. Her blood numbers were all normal, and have been for a while. (I’ve reproduced some numbers from her blood chart nearby). Notable was the Hemoglobin level of 13.7, and the fact that her protein levels are back to normal. That made her happy.

The biopsies taken from last week’s procedure “looked good, with no significant evidence” of anything serious. She’s still got “a touch of chronic GHVD” (graft vs host disease). The Budesonide she’s taking “topically” deals with the symptoms she’s experiencing in her GI tract.

It’s probably the best possible worlds that she’s got these mild GVHD symptoms, which are well controlled. What she’s got now is probably what she’s going to get at this stage. (GVHD is pretty much brought on by DNA/HLA mis-match with the donor. So the extra lengths they went to, in selecting a donor, are helping tremendously right now). At this point the possibility that she will get further symptoms is about 30% (not 50%, which is typical in the case of having unrelated donors).

She’s still susceptible to infections, although she’s gotten the primary infections that they look for. None of them were serious, but she had “a moderate amount of everything”, and that indeed was life-threatening. But she continues to take an anti-viral infection drug, and her chances of bacterial infection are “way down”.

It was a good report yesterday, after a number of months of bad times.

No news is good news at this point

We have not yet heard the results of the colonoscopy from last week. They are treating it as if she is positive for GvHD. Or at least, they are trying to “get ahead of” it. She’s taking a steroid called Budesonide, possibly instead of something called prednisolone, which I’ve read that other transplant patients take. It seems to have fewer side effects (though she complains it makes her mouth taste funny). Among other things, Budesonide is used to treat inflammatory bowels.

Beth got up and showered to go to church on Sunday, but the shower tuckered her out, and she’s still suffering from a bit of a GI ailment, so she ended up not doing much at all over the weekend. And generally, she’s just been resting in bed and not feeling too poorly.

She has crossed a kind of magic moment in her recovery — she’s now passed out of that “first 100 days”, which are marked by “Acute Graft vs Host Disease” (GvHD) and she’s moved into that period extending from day 90 to one year, “Chronic Graft vs Host Disease”. The two of these are similar, but they have different sets of symptoms. The acute phase is more well defined, and GvHD consists of (a) skin ailments, (b) gastro-intestinal ailments, and (c) liver ailments. The chronic phase is really much less well defined.

From the Chronic Graft vs Host link (which is a 2005 medical paper):

Summary Chronic graft versus host disease (GVHD) remains today one of the most vexing late complications of allogeneic stem cell transplantation. Occurring a minimum of 100 days following stem cell transplantation, approximately 50% of patients will experience some degree of chronic GVHD … Chronic GVHD most commonly affects the skin, liver, eyes or the mouth, however multiple other sites may also be affected. Chronic GVHD and the medications used to treat it result in a profoundly immunocompromised state. Death due to severe chronic GVHD is usually a consequence of infectious complications. Standard treatment for severe chronic GVHD is a combination of cyclosporine and prednisone. An alternating day regimen of these two agents prolongs survival and reduces drug-related adverse events …. The 10-year survival of patients with mild chronic GVHD is approximately 80%, but is less than 5% for patients affected by severe chronic GVHD.

She has an appointment scheduled for Thursday morning with Dr Rossetti, and I believe I’d like to take her to this one, just so that I can ask him what he’s now looking for with respect to this chronic phase. (But as we’ve found out, there are no guarantees).

Feeling a bit better

I talked with Dr Rossetti yesterday, and yes, he had seen all of these symptoms that Beth was experiencing, no, none of them, taken alone, is all that serious, and yes, all of these taken together have weakened her and will likely make her recovery somewhat longer.

Preparing for Catheter #3That said, she was feeling a bit better yesterday and this morning, though the clot is still a worry, and her hand had swelled up a bit more.

By the way, did you notice her smiling in this photo? She has always smiled nicely for photos, and she did so here, even though she was dreading the thought of having another central line put in. This one was her third, plus the clot-inducing PICC line in her arm.

Finally, I had a chance to sneak Dani into the hospital for a few minutes last night. The policy is “no children under 12” in the room, though even Dr Rossetti has allowed us to break that rule on occasion. Still, it made for a nice moment for both girls.

Beth and Dani
Beth and Dani

A lot of little things; not really anything serious

I had a chance to talk at length with one of the “practice” doctors (in Dr Rossetti’s practice) about all of this stuff that’s going wrong with Beth. The symptoms she is experiencing are loosely related (because they are typical for some transplant patients). But even when you add them all up, they’re not too serious. She is experiencing some pain, but a  we’re just seeing a bunch of loosely related nasty things.

Here’s a breakdown of some of the symptoms and what’s causing them (as best as I can tell):

  1. BK Virus: I had thought this was going to be the biggest threat, but the doctor said it’s not. It’s definitely the most annoying and painful, and there is a chance for it to head up to the kidneys and cause some damage there, but it is minimal.  This is what causes the frequent and painful urination. They’re continuing to give a lot of IV fluids to flush the virus out. Her urination is still painful, but an ultrasound just revealed that her bladder is emptying – urine is not backing up, which is good.
  2. CMV Virus: This is the more serious of the two viruses; it is being treated with Ganciclovir, and the numbers appear to be going down.
  3. The swollen legs: This is partly from the fluids, but partly because she isn’t eating enough protein. It’s the same kind of effect that we used to see in the big bellies of the starving kids in the World Vision commercials, except that it’s happening in her legs and feet.
  4. MRSA: This is probably the least of her problems. She has some degree of ability to fight infections, and it doesn’t really come up as a problem.
  5. The clot in the arm: There are two places where a clot could form: at the end, which is more serious (because the end reaches into the large artery that enters the heart), or somewhere nearer where the catheter enters the vein (the plastic is causing irritation). It is also incredibly swelled and very painful. They are giving her a mild treatment to dissolve the clot.

That’s a summary of what she’s facing. It’s all very painful and annoying, but no real danger to her health at this point.

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.

Not much happened today

Getting measured in Radiology

The photo here shows Beth getting herself measured in Radiology. Including consultations with a doctor, a nurse, and a radiation therapist, we spent about two hours or more down there.

Beth will get two days of “total body irradiation” the last two days before the transplant. Dr Rossetti had told us that the radiation reduces the chances of a relapse by some 20% or more. Right now, I view the relapse as my biggest fear.

You can’t see it from the photo, but she’ll stand at this board that she’s on; she’ll be strapped in, and they’ll bring the big “Radiation-generator” thing right up in front of her. These measurements will allow them to adjust the amounts of radiation at parts of her that are thicker or thinner.

She’ll have two 20-minute treatments – 10 minutes on one side, then they’ll flip her over and irradiate her 10 minutes on the other side.

The clear benefit of the procedure is to finish off any of the damaged bone marrow that’s left in her body, after the chemotherapy has had a chance to do its thing.

Aside from that, we went through the admission questionnaire – it’s pretty thorough, and for the first time, today, I saw a lot of these “history” questions being entered into a computer. Most of the time, they get hand-written on a piece of paper and stored away in a chart. She also got a treatment today called the “IVIG” treatment – it’s not a chemotherapy, but it’s supposed to enhance her ability to fight off viral infections, even as the Fludabarbine suppresses most of the rest of her immune system. She’ll get her first course of that tonight; she’ll have five days of the Fludabarbine and then four days of Busulfan.

And she slept a lot, in between.

With tears in her eyes

Yesterday, we spent a lot of time waiting for things. And a few “out-of-the-ordinary” moments came about because of some of the delays.

I mentioned that the biopsy didn’t happen until two hours after it was scheduled. You expect this sort of thing, when you’ve got all kinds of busy people having to converge on a single time and space (in this case, the recovery room at West Penn). Beth had 20 or so blood tests for which to give blood. Dr Rossetti was coming in from somewhere else, and had other patients to see besides Bethany. And the “hardware” to be used for the biopsy, which needed to be signed for (and which Dr Rossetti has brought in himself in the past) was delivered by someone else this time.

Beth wants me to be with her constantly, through this whole process, and as much as I am able, I want to be there with her as she goes through this. And the hospital folks are good enough to allow me to walk down to the recovery room (where the procedure will occur), and wait with her while she’s waiting.

During that time, they hook her up to the heart monitor, blood pressure cuff, the thing on her finger that measures her pulse, and we play games with each other. We have learned that spending time kissing (the curtains are drawn, of course) lowers her heart rate and blood pressure. It relaxes her.

After Dr Rossetti arrived, somewhat late, but before the hardware arrived, the nurse anesthetist began to ready herself for the procedure. And at one point, she had given Beth some of the “twilight” or “conscious sedation” medication that is used in the procedure.

This medication functions as a kind of truth serum, and I’m sure that medical people have heard lots of ramblings from people before they actually go to sleep. And we have seen limited glimpses of how this works ourselves. For example, our son Zach, before a surgical procedure for a hernia when he was three years old, went from a hard scream and cry to a calm, peaceful smile, almost instantaneously.

Beth, once the mask went on and the white plunger was pressed, began to cry and talk, and I bent over and stroked her hair and kissed her forehead and let her know I was there. She looked me right in the eye and struggled to articulate the words, but I heard them very clearly, “I will never forget you”. “Thank you for loving me, I will love you forever,” she said to me, and to be sure, it’s a moment I’ll never forget. She mumbled something about “our daughters” but her eyes were rolling, and her eyes were still teared-up and it wasn’t long before I was getting kicked out.

It must have been awkward for her, but I’m grateful to the nurse anesthetist for not booting me out right away, for allowing me to share those moments. Of course, Beth was not merely crying because of the biopsy procedure that was about to occur, but because of the whole process of having a life-threatening illness, and the struggles she’s faced over the past few months, facing the thought that she really could die very soon.

These are incredibly hard, though incredibly human things to face. She has done it with such an exterior calm and dignity, that it’s almost possible to miss what she’s struggling with. I am tremendously grateful to those who have come into our lives – lots of people we don’t even know, her old friends from the 203rd MI BN — her army unit, the people whom I work with, those who know me from my blogging, and most of all, Pastor Matt and the members of my church, City Reformed PCA.

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.

We may learn something today

We have an appointment at 1:45 today with Dr. Rossetti, our usual monthly appointment with him. My hope is that we’ll hear some good news about a donor, and possibly a schedule for the transplant. So today I’ll go in and work from about 6 am till 10 am, and then take Beth to her Vidaza treatment at 11:30, and then out to West Penn.

One of the women I work with has a mother-in-law who has had a mild, chronic version of leukemia since 1988. Over the years, she had no treatment at all for it; now she is in her 70’s and it has increased a bit and so now they’re bringing her in for chemo.

The danger always is that these “pre-leukemias” (MDS, CMML, etc.) will progress to AML (“acute myeloid leukemia”). That’s when it’s really aggressive.

Beth has gone the other way. They’ve beaten down her leukemia function, but in the process they’ve seemingly hollowed her out as well. She had some difficulty walking up the three steps to our bridge last night. She has 20% bone marrow, instead of the usual 50%. And all her other blood levels are just bumping along at a very low rate.

When I first started reading about Vidaza, I was under the impression that “The expectation is that the Vidaza will reduce her overall ‘risk level’ and strengthen her body for ‘conditioning’, which will kill most if not all of the cancer-causing function”, as I wrote at the time.

In a randomized controlled trial comparing azacitidine to supportive treatment of MDS, around 16% of people receiving the drug had a complete or partial response—blood cell counts and bone marrow morphology returning to normaland 2/3 patients who required blood transfusions before the study no longer needed them after receiving azacitidine (emphasis added).

So Beth is not among those who has not needed the transfusions. She’s needed them. The Vidaza is killing the cancer-causing function, but on the other hand, it doesn’t seem to be strengthening her at all.

This will be something to ask Dr. Rossetti today.