Monthly Archives: May 2013

I’m Normal! (ish)…

Whoo hoo! As of yesterday, day 46 after my mini haplo transplant, all my blood counts are normal except for the red blood cells (which are apparently the last thing to come back). Here are my white counts (the red line is ‘phils, which they didn’t always give me a number for):

The big white count spike a few days ago was when I got a sore throat.

(The big spike a few days ago was when I got a minor sore throat). There is often a blood count dip around day 60, so I will look out for that in a couple weeks. But for now, I am psyched–even my liver enzymes are down into the normal range! I am still not allowed to go outside without a mask in the city, or floss, or be in crowds, or eat at buffets, but I am totally psyched to be making progress.

I’d just like to say that all this is way more encouraging than back right after the transplant, when the key to my daily blood-numbers printout literally told me to “panic.” what to panic about

For example, here are some images from my printout way back on day 7 after transplant, in mid-April.

Actual standard language at the bottom of each blood counts printout I've got.

Actual standard language at the bottom of each labs printout.

As they’d just intentionally suppressed my old immune system to make way for the new one, near-zero white counts were normal. It was obviously cause for caution, but I really doubt panic would have helped. They should definitely reword that…

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

My So-Called Showers

If all keeps going well, two weeks from today they’ll take out my catheter and send me home to D.C., which means that I’LL FINALLY GET TO TAKE A REAL SHOWER. Because I can’t get the Hickman catheter in my chest (more precisely, the dressing-covered place where it comes out of my chest) wet, I haven’t had a carefree, normal shower in a month and a half.

When your platelets are low, it's a lousy time to slip on the bathroom floor. I recommend machine-washable bathmats that are fluffy on one side and rubbery on the other.

When your platelets are low, it’s a lousy time to slip on the bathroom floor. I recommend machine-washable bathmats that are fluffy on one side and rubbery on the other.

Don’t get me wrong–I’m very thankful that I don’t have to get stuck with needles every time I go to the outpatient unit (which was daily, at first, though now they are giving me one or two days off between visits). And I’m really, really thankful they didn’t have to run the pre- and post-transplant chemo into my veins (which they never do because it would hurt them too much). Thank you, medical science, for my catheter!

But taping plastic wrap over my catheter site to take a shower is both insecure (the paper tape tends to come off in places after a few minutes) and a bit painful when I take it off (which is why I don’t use stronger tape). So I wind up:

1. Clipping a towel round my neck with office clips, sitting down on the shower seat with my head between my knees, and washing my scalp and face with the handheld shower thingy (getting my sister to turn on and off the water).

2. Drying my head, getting out of the shower, walking over to the mirror on the two rubber-backed bathmats I got to keep me from slipping on the floor, and taping plastic wrap over my catheter, trying to get the tape a little off from where it was the last time, and making sure most of the tape width is stuck to my skin rather than the wrap. (Taping dismembered ziplock baggie over my catheter was a complete debacle–it’s not flexible enough). Then, moving my arms round a bit to see if the tape is going to come off out of hand.

3. As quickly as possible without moving my right arm much, soaping and rinsing my upper trunk, armpits, and shoulders.

4. Getting out again, drying off, and rubbing the top side of the tape with rubbing alcohol to help release it before it bonds more to my skin. Washing my arms in the sink, carefully avoiding letting the water get on my trunk, and drying them. Gently as possible, and using more swabs, peeling off the plastic wrap.

5. Putting on a camisole (folded up double over my bosom) to keep that site dry, getting back into the shower, and using the handheld to shower the rest of my body.

There I go–in a mere 45 minutes, I am mostly as clean as I would be from a normal 15-minute shower!

But when I leave all this behind, won’t I miss it, a tiny bit? NO. No, I will not.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Mhaaaaa-ROWR! I’m a Chimera

Pearson Scott Foresman/Wikimedia/public domain (altered)

Pearson Scott Foresman/Wikimedia/public domain (altered)

Yesterday I got some great news: I am a bona fide chimera! Fortunately this means not that I’m a goat with the head of a lion or some such, but rather that I’m a mixture of original me-flavor cells (everywhere but the blood and marrow) with new-and-improved donor-flavor blood. This was exactly the goal of the transplant. The test (for which they’d taken blood a week earlier) showed I’m 100% donor in my peripheral blood (i.e., blood in general) and 94% donor in my T cells.

I briefly emailed Dr. Concerned and Dr. Virginia the news, and they said it was “fantastic” and “great” respectively. I’m especially psyched about Dr. Concerned’s response, as she’s the big fancy transplant expert.

Of course, this is just one step along the journey–it’s certain that a few of my original marrow cells, including some of the cancer, is in there someplace (especially as I just got a “mini” transplant; after the chemo I got in 2006, my body couldn’t handle the full myeloablative fry-the-heck-out-of-your-old-marrow treatment). So the goal is for my new immune system, now that it’s up and running, to go after the malignant cells.

In other news, I have a mild rash which is moving around random parts of my body (leaving some places as it shows up in others). It’s annoying and itchy, but it’s likely a very mild case of graft vs host syndrome, which it turns out is actually a positive thing–it shows that the donor cells are feisty in there. In 25 days (at day 60 after transplant) the doctors will take a bone marrow biopsy to see whether the new marrow is doing the right thing and wiping out the residual cancer cells. They will also discharge me back to DC on day 60 (although the biopsy test results will, if past experience is any indication, not come back for all eternity in subjective time, and maybe a week or so in objective time).

Oh, and today I got to stop taking one of the most annoying drugs (the one where I had to get up at 6 am and also to not eat for several three-hour swaths of my day, and it irritated my stomach). So, I’m grateful for that also. Yay!

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Did I Mention Your Results May Vary?

did I mention your results may vary              

 

 

 

 

 

My white counts are not as such rock-star levels now that they stopped the white-count-boosting drug and started me on the suppress-your-immune-system-a-little-but-prevent-a-popular-kind-of-pneumonia antibiotic. They’re at a little over half normal levels, in fact.

But hey, my platelets are higher than they were since I was diagnosed with MDS (in fact, higher than they were several months before that). So I’m way less fragile that way! And I can hope that the platelet count indicates it’s donor marrow at work in there (since my own marrow had not exactly been shining in the platelet department). We’ll find out the results of that test Friday.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Your Results May Vary

One thing I think it’s real important to keep in mind is that there’s a whole lot of random in daily test results sometimes. Today, I feel like a hematological rock star, because one of the nurses told me yesterday, “You’re a rock star for getting a high enough white count to be given tomorrow off of coming in” to the outpatient unit. But that’s definitely not the whole story of the past couple weeks.

your results may varyAlthough my counts have been going up like crazy for the past three or four days, before that there were three or four days when my main clinician (whom I’ll call Nurse Practitioner Brusque Yet Friendly) seemed clearly disappointed that my white counts were stuck in the 700s.

And before that, there was the exciting first day when the nurse told me there were signs of marrow activity (a white count of .25), and my assignment was to be .40 the next day, but instead I dropped to .19.

Jesus helped me keep these reversals mostly in perspective (at least, to the extent of not brooding on them when I was supposed to be falling asleep), but it’s always a temptation to dwell on things.

Anyway, for today, yay! My white counts and ‘phils are technically in the normal range. But they’ll probably fluctuate some more (starting now that they’ve discontinued the ‘phil-boosting shots and put me on a routine antibiotic that will suppress my counts a little). And that’s ok.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Goal: Not-I 95!

I’m happy to report that, at day 26 post-transplant, my white counts have really shot up–they were 2.73 yesterday, with the ‘phils 2.10! My platelets have started going up too, and reached 41 yesterday (a little over a quarter of the normal level). The red blood cells are the last to go into production after a transplant, and haven’t started going up yet–I got a transfusion of them yesterday to carry me over (after a couple days of being pretty wilted), and feel much better today. I will need to wear a mask outdoors and be very careful about infection for at least six months, as apparently the T cells (an important kind of white blood cell) take that long to come back, but it’s great to have way more immune system now than I did a couple weeks ago, and to know that there is very active marrow–hopefully my donor’s–doing its thing hidden away in my bones.

Speaking of which, this Friday they’ll take some blood to test how much of my blood is being made by my my donor’s marrow–the goal is for her marrow to be at least 95% of what’s in there, with no more than 5% from leftover marrow of my own. (This will facilitate the whole point of the transplant, which is to replace my old immune system with a new one that will, Lord willing, recognize and destroy the malignant cells I got diagnosed with last fall).

I asked all my friends and family to pray for “not-I 95” (except for my donor, whom I asked to pray for I-95).  It will take a week for the test results to come back, so looks like it might be time for another test result wait hymn sing.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

I Do Not Want What I Haven’t Got. Well, Not All That Much.

At almost exactly the same time that my ‘phils finally started coming up to measurable levels, my hair finally started to fall out. I knew this would happen, and frankly it was a bit of a relief to think that I could finally get through that and start growing the hair that, Lord willing, I will get to keep.

I do not want what I have not got

Old hair, this is the last day of our acquaintance.

It’s still not a nice feeling to run your fingers through your hair and put lots of it into the wastebasket, though. After the first day of this, my hair just looked flatter, but by day 3 there were only wisps left and I started to look like Gollum. Clearly, it was time to take action.

So I went to the “Image Recovery Center” here and got my head shaved, thus moving from Middle Earth to the early ’90s. That’s right–I went Sinead. Came home and listened to a couple of her albums on my headphones, as my caretaker sister inexplicably doesn’t like O’Connor’s music.

Since then I have been feeling a little more headachey, but I guess that will pass once I figure out the right mix of warm-but-not-too-tight scarf or hat.

Oh, and it’s only the head hair that falls out, not the leg hair. I’m very grateful that Cytoxan killed off the specific kind of donated marrow cells that would otherwise have launched a full-out attack on my liver — but the drug is kind of a petty bastard, side effect-wise.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.