Category Archives: immunocompromised passive aggression

Home at Last! Also, I’m a Vampire.

Many thanks to my fantabulous boyfriend, my sister, and my friend Sue for moving me out of the patient hotel near Hopkins lickety split Saturday morning! I’m really enjoying being back in my place in D.C. and experiencing catheter-free showers. It does turn out that just because I’m in the same place doesn’t mean I have the same level of energy I did when I was last here, but all things in time. I went to my own church on Sunday, St. Stephen & the Incarnation–they’d been bringing me the Eucharist each week, but being there with people (even though I have to sit over to the side and wear a face mask).

And, of course, most thanks of all to God, for bringing me through the transplant process so far!

My sun-deflection gear so far...

My sun-deflection gear so far…

In other news, it’s come to my attention that I’m sort of a vampire–fortunately, not in the soulless-being-who-goes-forth-at-night-to-feed-on-the-living sense. Not even in the living-on-other-people’s-blood sense, though I guess basically all my blood derives from my sister’s marrow (and will, Lord willing, for the rest of my life).

No, I’m thinking about sunlight. For most of my life I’ve avoided getting sunburns, pretty well. As a fair-skinned person I know I’m susceptible to melanoma, not to mention short-term burning, pain, and peeling. However, now that I’m a chimera it is the case, and I quote directly from the hospital discharge packet, “even mild sunburn can trigger severe, life-threatening GVHD”–graft vs. host disease.

That’s right–a single mild sunburn could KILL me. Probably won’t, but could.

If all goes well, I will have decades and decades to be vigilant about this. I made a start today by ordering some wicking long-sleeved shirts for hot weather. Tomorrow I research sunscreens and order some more hats to supplement my current vampire gear.

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

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.

You Kind of Had to Be There. But It’s Just as Well You Weren’t.

I’ve been spending some hours each day in the IPOP unit at Johns Hopkins (or its twin the HIPOP unit). This “inpatient outpatient” model is awesome, as it means I can get all my daily tests and infusions (anti-rejection drugs; platelets and red blood cells as needed) while still spending the rest of the day in the comfort of my own little apartment across the street from the hospital.

The unit is divided up into little curtained enclosures so that immunocompromised folks can, once the curtain is closed, take off their masks and breathe freely without anyone else sneezing on them. Of course, curtains don’t provide a lot of sonic privacy, and as it happens all the enclosures have tvs, so from time to time you’ll wind up listening to your neighbor’s tv playing, for example, two episodes of “I Love Lucy” in a row (Golden Age? I don’t think so, but that’s why my sister brings my headphones for my ipad in the bag she shleps with me each day).

Today was the day I switched over from a 4-hour infusion to being able to take that particular drug in pill form (yay!), so I didn’t bother to put on my headphones as my sister and I waited for my daily blood counts to come back and for us to be dismissed. That’s why we were both at leisure to involuntarily overhear someone else’s loud, long speakerphone conversation, and keep cracking up at how wildly inappropriate it was to be overheard by people who might be stressed about their own bone marrow transplants. The person on the other end of the conversation appeared to be talking about someone else who’d had a bone marrow transplant also:

“so and so had a transplant… how did she do? Oh, she died… she had a visitor come over with a cold, and caught it … You better be careful, now! … blood all over her legs … ”

Unless I’m confusing the speakerphone lady with someone else, her cell phone ring was that classic blues riff: da DA da da  dah. So when it rang again, I improvised the following in a low voice to my sister:

Da DAH da da dah
Oh cell phone lady
Da DAH da da dah
Getting another speakerphone call
Da DAH da da dah
Sharing all kinds of details
Da DAH da da dah
I don’t want to hear at all.

Well, as I said, it was just as well you weren’t there. But it was funny at the time.

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

Take this cup. For real, TAKE it.

So you’ve heard the flu shot is somewhat ineffective this year, and, though you have a normal immune system, you don’t want to take the Eucharist from a common chalice.

Part of me kind of wants to slap you.

Eucharist,  Laurence Gough/ Shutterstock.com

Obviously, that’s not what Jesus would do. We know what Jesus did  — he offered you his lifeblood, saying “This is my blood of the covenant, which is poured out for many.” Ever after, Christians have taken wine and bread, a sacrament which binds us together in communion with other Christ-followers around the globe and through two millennia.

For the last few months, because my cancer treatment had decimated my immune system, I haven’t been able to drink from the common chalice (or to eat most raw food, go to the movies, or get on the bus without a face mask). I really miss it. So I want to share two key insights I’ve had about the common Eucharistic cup.

1. Chalice-sharing is safer than touching a doorknob, because people’s lips are WAY cleaner than their hands. This is born out by various medical surveys, like this one or this one or this microbiologist, who points out Communion is as safe as “standing in line at the movies.” (And it’s a lot better for you spiritually). People tend to ignore this reality because they assume that, as lips are a more private body part than hands, they’re more likely to spread illness. While this private-equals-contagious idea is true of the very most private parts of your body — having sex can give you HIV — it’s just dead wrong when it comes to lips. Even when my immune system is down to 10 percent of normal, I’ve been allowed to kiss my boyfriend, as long as he isn’t sick. In contrast, we both have to wash our hands for at least 20 seconds before touching anything I’m going to eat (otherwise, it would be like licking every doorknob we’d touched recently).

If you think about it rationally, you will observe that your Episcopalian or Catholic friends don’t get sick noticeably more than anybody else. Priests in some traditions routinely finish off wine remaining in the bottom of the chalice after everyone has drunk, but you’ve never heard anyone use the saying “sickly as a parish priest” (at least, Google hasn’t). But, actually, thinking about this rationally isn’t where you should stop, because:

2. The Eucharist is supposed to be in your face. When Paul told church members to greet each other with a kiss and to throw away their society’s entire class hierarchy over the Lord’s supper, that was pretty in your face. Even if you’re not one of Jesus’ original disciples, for whom blood would have been the least kosher thing you could possibly put in your mouth, you are still drinking human blood. Whether you take that with a side order of transubstantiation, consubstantiation, or just deep symbolism, if this sacrament is not a little edgy, you may not be doing it right.

So sure, use reasonable precautions against illness. Wash your hands before you eat (antibacterial gels like Purell are not certified against viruses such as the flu), especially if you’ve touched a doorknob or your keyboard or money. Get a flu shot. And for Pete’s sake, cough in your sleeve rather than on your hand (unless you want a germ-spreading method more efficient than spitting on each individual doorknob). If you have a compromised immune system or are in an area with cholera or something, do take precautions about the Eucharist.

But don’t let the mold of this world, or an unexamined culture of fear and separation, pressure you into needlessly separating yourself from the blood — and Body — of Christ.

This post reprinted with permission from the God’s Politics blog.

Photo: Eucharist,  Laurence Gough/ Shutterstock.com