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.
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 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 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.
|White Cells (4.4)
(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.
Beth is going to get to stay again. It’s been a busy day for her. They lanced all of her abscesses, which relieved quite a bit of pressure. She got more Vancomycin, her two remaining bags of Vidaza, and FOUR units of blood instead of the usual two.
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…
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.