Prayer, Science, and Pointy Things

Well, I’m glad to say that I continue to do well medically, and I really appreciate that all the more because two very special people I know (including one who had been in a remission that raised hopes he might be out of the woods) have gotten bad news in their own battles with cancer. My prayers and best thoughts are with them, and with a couple people in similar situations whose blogs I’ve been following.

Actually, if you are a praying sort yourself, please pause for a moment now to pray for A. and T. (names abbreviated for privacy). They are both amazing people.

Other than praying, I’ve been preoccupied with a) resting, b) avoiding sunlight, c) resting, d) feeling very fortunate, e) a few organizing projects at home, f) resting, and g) researching the best ways to avoid sunlight.

Don't mess with me--I have pointy things. Extremely small pointy things.

Don’t mess with me–I have pointy things. Extremely small pointy things.

Also, a couple weeks ago I also started participating in a study at Johns Hopkins. It’s not the kind of study you get into when all else fails, but rather the kind where they are trying giving additional medicine to people who’ve had successful transplants, in an effort to cut the significant rate of post-transplant relapse into MDS or leukemia (and, if my MDS comes back, it will turn into leukemia). It’s the “hit it with everything you’ve got while it’s down” philosophy which is so inappropriate for, say, warts, and so appropriate for deadly malignancies. In this case, the extra medicine is more Vidaza (which I got as a pretreatment for the transplant), plus sargramostim, a white-blood-cell booster which will counter Vidaza’s effect of suppressing white blood cell production. Apparently, based on studying cells in the lab, the doctors have good reason to believe that these drugs work best in combo. When I got Vidaza before, of course, I was not eligible for white-cell-boosting drugs because they could have boosted the cancer in my bone marrow, but that cancer is either gone (in which case this is all overkill) or at undetectably low levels (in which case this could juice up my good, donor-flavor white blood cells to finish off the cancer and save my life).

Of course, we don’t know if it will work–that’s the point of it being a study–but they will keep very close tabs on me while I’m in the study.

The practical impact of all this is that, one week a month, I have to drive to Baltimore every weekday to get a Vidaza shot (because the study protocol is too rigid for me to get it at Dr. Virginia’s office). Also, I have to give myself a shot in the stomach for ten days running (that’s the sargramostim, which boosts my white blood cells). It turns out that sticking a needle into my own body is way easier than I thought it would be, but on the other hand it is a huge drag to mix up the drug–I have to draw a ml of sterile water from one vial, inject it into a different vial with the drug powder in it, shake it to mix, then draw a half-ml out of that vial to put into myself. I keep thwocking at the syringe to get rid of stubborn air bubbles that would throw off the measurement, plus the stupid syringes have the lid stuck onto the needle far more securely than the needle part is stuck onto the body. Fortunately I’ve only had them come apart when empty, so I could just start over with a new syringe and not waste the heinously expensive medicine.

In other news, something about the combination of drugs (and a blood cell dip which is apparently not unusual 60-100 days after transplant) completely kicked my butt during the week of Vidaza shots. Fatigue-o-rama.  Thanks for being there, sofa!

Several people I know seem irked that the study is not paying my expenses (Kaiser is paying for the medicine, and I’m paying for copays and zipcar or MARC train to get to Hopkins), but personally I feel that these expenses are well worth it for something that could be saving my life. I think it is pretty cool that, if it does save my life, that information will help save other people’s lives too.

And, it does make me feel pretty badass to have my own homemade sharps container in my kitchen.

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

Five Stages of Chemo Hair

Your results may vary. Especially if you do not start off with a pixie haircut.

Your results may vary. Especially if you do not start off with a pixie haircut.

As this is my second time surviving cancer, I knew a few things about hair loss–for example, I remembered that when my hair started to come back in it would look black, but then eventually transform to my normal red color (with a few, ahem, platinum blonde strands). But I forgot that different follicles start at different times, so you have a few pioneer hairs at first, and they look kind of lonely. Then the other follicles kick in and you get a hybrid between a buzz cut and a five o’ clock shadow, which I have slanderously called “unkempt Marine.” In reality I’m sure Marines’ hair is kempt, because all their hairs got cut at the same time.

Generally even hair length, plus hair that curls, is what enabled a good friend of mine who shaved her head one time to develop adorable little ringlets all over her head. That’s what I was hoping for the first time I was recovering from chemo, but this time I know it ain’t gonna happen. But eventually I’ll get back to pixie, and when I do I’ll count my blessings.

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

Wow.

I just had a couple former Sojo colleagues over for dinner. One of them, Jen, had signed up for the bone marrow registry after I urged everyone I knew to do so, and now, though they need some more tests to be sure, it looks like she’s actually been matched and asked to donate.

This totally flabbergasts me. All she knows about the potential donee is that he’s a 30-year-old male overseas with MDS, and that she might well save his life. If he has MDS that young, he might have a history really similar to mine–getting MDS as a result of earlier chemo, which could well have been for Hodgkin’s lymphoma (since this is one of the cancers that strikes younger folks).

Only, unlike me, I guess he doesn’t have a parent or sibling who’s eligible to donate.

Between writing the line above and this one, I’ve just been staring at the screen blankly and tearing up.

I’m SO proud of Jen, and her awesome Catholic employer which let her take a day off for testing right after she started working there, and of all donors. They are amazing, and if you are between 18 and 44 and not a cancer survivor yourself, you should go sign up for the registry right now and get your cheek swab kit mailed to you. Most people never get asked to donate, but if you do, you could save a life.

If Jen’s donation does go through it sounds like odds are she’d be asked for stem cells (the pretty low-impact process I described here), but it might be actual marrow (where they go into your hip bone to take 1-5% of your bone marrow, as they did for my sister who donated to me, and which can take several weeks to fully recover from–thanks again, sis!)

Either way, this is literally awesome, in the sense of inspiring awe.

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

Moment for Celebration!

Today my bone marrow biopsy came in looking “beautiful,” as Dr. Concerned put it–they could not see any cancer cells in it! (They are still doing the genetic tests, but it’s unlikely they will turn up anything bad, since the tests they did already are good). Yay yay yay! I should have know the biopsy was good the minute I saw Dr. Concerned, because she was smiling (beaming, almost) rather than looking concerned. My awesome dad came into town to go to the appointment with me. Thanks, Dad!

I’m definitely not out of the woods yet, as my cancer could recur–myelodysplastic syndrome does this too often, especially in the first couple years after transplant. I’ll be getting regular bone marrow biopsies for follow-up–hopefully from Nurse Practitioner Brusque Yet Friendly, whose skills are excellent at holding down the extreme-pain-time to just the first pull of marrow. Although Dr. Virginia did a particularly good job the last time he took one, too–when he was putting the needle into my hipbone I thought he was still just putting in the lidocaine. Until the first pull. But hey, bone marrow biopsies only last a few seconds, and have the positive effect of enabling me to feel all hardy and survivor-y.

mmmm...Union Market.

mmmm…Union Market.

Anyway, the point is, so far, so good! I’m really grateful to God and to everyone who’s been praying and offering emotional support. Now I just concentrate on recovering my energy, avoiding sunburn, and being careful as my immune system recovers.

And on food. After the appointment Dad took me to Union Market to stock up on some flavor. (Yes, I know gentrification is complex and often problematic, but I want a $30 bottle of balsamic vinegar, darn it!) Unfortunately, the pate de campagne has to wait another four months at least, as I’m too immunocompromised to eat deli items. And Dr. Concerned vetoed soft cheeses for now. But we had some Takorean (yes, bulgogi in tacos…it’s really good. For real, try it if you get the chance.) We also got me some groceries, including some “heartichino” sausage from Red Apron Butchery, which I later cooked until it would have made Nathan Anda’s heart very very sad, but my oncologist’s reasonably peaceful, to see it–and it still tasted a-MAZ-ing. Thanks, nose-to-tail foodie charcuterie trend!

Happy weekend, everyone!

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

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.