Tag Archives: immunocompromised

Compelling Explanations

So, it turns out Phil does not like being in this study. As you can see, my neutrophils decided to take a nosedive shortly after I started the Vidaza on 7/8. (This is for the study I got into, to tweak the post-transplant treatment of people with successful bone marrow transplants in order to try to reduce the risk of recurrence.) Less Phil is a pain in the tush, as it means more mask-wearing, obsessive hand-washing, and general persnicketiness–possibly for the whole year I’m in the study. The study also includes me giving myself shots of white blood cell boosting medicine (Sargramostim), but apparently Vidaza’s ‘phil-busting side effects trump Sargramostim’s ‘phil-boosting. Darn you, Sargramostim! Stand up and fight! Do it for Phil.

Phil does not like being in the study.

Phil does not like being in the study.

A bigger question, which I asked my doctor last week, was why a regimen that depresses my white cell count is boosting my immune response to any cancer cells that may still be lurking in my bone marrow.

As I expected, my doc at Hopkins had a compelling explanation. While my phils, which help fight bacteria and viruses, are taking a temporary pounding from the Vidaza, my lymphocytes, which are instrumental in going after cancer, are relatively unaffected. Meanwhile, the Vidaza turns on DNA in cancer cells which helps them to go ahead and DIE, already.

So, it’s clearly time to put my face mask on, thankfully accept my access to cutting-edge medical science, and suck up the fatigue and immunocompromised-ness. Because fatigue is a lot easier to treat than cancer.

P.S. Amusing line overheard in waiting room from a woman explaining to a friend that her case is very unusual: “So I asked, ‘What noise does a guinea pig make?'”

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

 

Let’s Talk Sky-High Medical Costs (and one thing that doesn’t suck about the Cheesecake Factory)

medical costsThe New York Times recently had a great piece about how any given medical procedure in the U.S. almost always costs more–often many times more–than the same darn thing in other rich countries. This is probably the biggest reason why U.S. medical spending per person is maybe twice that of other rich countries, with worse health outcomes. I’ve been following this ever since I wrote an article about it, Sky High and Rising, for Sojourners magazine, where I work (normally, I mean–I’m out sick now).

The NYT article is great and you should read it right now (though Dean Baker points out, as he is wont to do, that it ignores the huge effects of medical patents). And I like that the article has space at the bottom for people to add their own responses to several related questions.

But I think most people were way, way off when they responded to the question of how it would affect them if doctors provided upfront price lists for procedures. I am all for transparency, but just having price information without other information could be worse than useless:

-For one thing, it could lead people to decide between doctors or between hospitals based on price without knowing how good the doctor is. You might either wind up choosing the cheapest, or using price as a proxy for quality and choosing a more expensive one, but you’re not making an informed choice.

-To get information about how good a doctor is, you can’t just go with patient satisfaction (which is based more on bedside manner) or even with how many patients get well–you’d have to factor in how sick that doctor’s patients were beforehand. (This is the kind of thing that the new Accountable Care Organizations, which pay for medical results rather than piled-on procedures, are taking a hard look at).

-On top of knowing how good various doctors were, you’d have to know how important a given procedure is, if you didn’t trust your doctor–presumably one goal of knowing the price is for you to decide whether the procedure is worth it for you at all.

-While it is a great idea for there to be some system-wide effort to see whether medical procedures are effective, it is a terrible idea for even well-informed consumers to take calculated risks. I’m a prime example. In 2005, I had a mild cough that wouldn’t go away, and I felt run down.  As a healthy, nonsmoking person in my mid-30s who exercised regularly–and who was living on a nonprofit salary–if I’d had no health insurance, I might have deferred going to the doctor much longer than I did. Indeed, it two two or three doctor visits before they took a chest x-ray and determined that I did not have the expected walking pneumonia, but rather an apple-sized tumor next to my lungs. If it had taken me longer to go to the doctor, who knows whether they’d have been able to cure me? Thank God I did have health insurance with a reasonable copay (thanks also to Sojourners and Kaiser Permanente).

-I can personally verify that, if you get a serious illness, you are going to get way more information than you can handle. I am a smart person. I have an Ivy League doctoral degree. But when I get told I have cancer, it’s really hard for me to take in all the information the doctor is telling me about it, even when the doctor is excellent at communicating (and when I haven’t just started to flat-out cry).

So what do I think we should do, if not give everyone way more information than they can handle and then let them suffer the results? I think that the medical system should do the hard work and build up the expertise to develop standards of care, and follow them. I was inspired by this article in The New Yorker about how medicine should have the level of quality control that characterizes the Cheesecake Factory. The comparison is pretty ironic, as the Cheesecake Factory’s stomach-turningly insane portion sizes (a single entree, without drink or dessert, can have more than your whole day’s worth of calories and five times your day’s recommended saturated fat) are just the sort of thing that fuels the U.S. obesity epidemic. But hey, irony is everywhere.

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.

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

Handwashing to the O Antiphons: Wisdom

Today is the first day of the “O Antiphons,” which, during the last seven days of Advent, are traditionally said or sung before the Magnificat in vespers (evening prayer). Growing up Protestant, I learned them in the form of the great Christmas hymn “O Come O Come Emmanuel,” which is a paraphrase.

So, because Advent is for the immunocompromised too, I’ll be posting the verses relevant to each day, along with a note of where the 20-second mark is (for those of us who need to wash our hands for 20 seconds each and every time, and are sick of singing “Happy Birthday”).

However, the 20-second mark varies a bit based not only on how fast you sing it, but whether you are using, as I usually have, the tune’s Protestant version, which has a longer note at the end of each line (i.e. at “high,” “mightily,” “show,” and “go” in this verse). Catholics, I’ve noticed, tend to use what I presume is the original full-strength plainsong where you just plain sing every single note the exact same length, except maybe the very end of the chorus.

O come thou Wisdom from on high
Who orderest all things mightily
To us the path of knowledge show
And teach us in her ways to go. [Protestants rinse]
Rejoice! Rejoice! [Catholics rinse]
Emmanuel shall come to thee, O Israel.

Whichever side of the Tiber you’re on, happy last week of Advent!

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.

Phil, Why So Distant?

[The kind of white blood cells that are the body’s first line of defense against infection are called neutrophils. I call them Phil, for short.]

Dear Phil,

You know, we’ve been through a lot together. For four decades, you’ve really looked out for me. When I first had cancer in 2005, and the chemo was getting to you, the nice doctors perked you right back up with Neulasta, and you even came back nice and fast after my autologous stem cell transplant. I’ve really appreciated it.

But now things have changed. I don’t know whether it’s the MDS or the side effects of the Vidaza, maybe both, but you’ve been getting more distant–real distant. It’s happened silently, so much so I almost wouldn’t have noticed you’re not there, but the doctor says I have to wear a mask on the Metro, and not eat raw food except fruit I can wash really thoroughly, and take my temperature a couple times a day.

Dear Phil

Friends kid that I should just get a single sequined glove to go with the surgical mask, but I have to face the truth: without you, Phil, I don’t get around much anymore.

Sincerely,

Cherisheach

 

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.