Author Archives: cherisheach

About cherisheach

When I survived Hodgkin’s lymphoma six years ago, everyone kept asking if I was going to write about it. And heck no, I sure wasn’t. I believe that God is there for each one of us every minute of every day, but the way God chose to be there for me at the time, when I first got diagnosed and then again after the first-line chemo failed, was to give me grace to be merely pathologically anxious rather than batcrap insane. Probably God was offering more than that … I may have a leetle bit of a history of difficulty internalizing grace. Anyway, in 2006 the nice folks at Johns Hopkins gave me chemo so strong that first they had to take out some of my stem cells (bone marrow, but without the bone-drilling) and freeze it so that afterwards they could re-infuse it back into me to re-start my immune system. I slowly got back some hair and energy and normal blood counts, and went back to my dream job at a progressive Christian magazine, and after a couple years it started to become clear that my lymphoma was, against the odds, cured. And a year and 10 months ago at the Catholic Worker I met a pacifist with a Ph.D. who writes good poetry and goes to church even more often than I do, and we’ve been dating. Then, just as I was planning a big six-year hey-they-cured-my-cancer party, I got diagnosed with cancer again. It’s myelodysplastic syndrome (MDS), abnormal cells in my bone marrow which will turn into leukemia unless cured. So, after four to six months of preliminary treatment, I’ve gone back to Hopkins for a “mini” stem cell transplant, with the goal of donor marrow from my sister having an immune response and destroying the malignant cells. This time, I feel weirdly calm most of the time—which is, as someone at church pointed out, literally peace that passeth understanding. Also, I seem to have some of the deep thoughts that everyone expected me to have last time. Hence, the blogging. Here’s the main deep thought: Cherish each moment, even the ones that suck. You can’t predict the future, but you can screw up the present moment obsessing about the future. Or you can be present in the moment, whether you’re weeping or worshipping or eating a carrot or looking at a glorious dandelion or just breathing.

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.

Hickman Catheter Date Strip Art!

Iheartnurses

I told my caregiver not to put an exclamation point after “I heart nurses”… I didn’t want to go over the line into sucking up.

Do you have a Hickman catheter *and* an artistic caregiver? Then you should be aware that the little date strip (where you write the last time the dressing was changed) has plenty of space for additional artistic expression!

The little smiley face peeks out of my neckline when I wear a v-neck blouse.  (The smudge of yellow at the bottom is because I’m allergic to chloraprep swabs, so we go with betadyne).

Go and do likewise! Maybe with fine-tipped colored Sharpie markers!

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.

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.