IV blouse

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With my terminal diagnosis, I continue to focus on individual friends and trying to sleep and eat. However, there is one thing I need to inform the blogosphere of before I go: the following no-sew, can-put-it-on-

Blue heather wrap blouse in action.

when-attached-to-an-IV-pole blouse.

If you have ever been inpatient at a hospital for a few days (or, ahem, more than 42 days), you will have observed that they never, ever, ever detach you from your IV pole. If you have a catheter in your chest (Hickman or pheresis), then the only wardrobe constraint this puts on you is to wear button-front shirts.

If, on the other hand, you have a PICC line or just a standard IV stuck in your hand, things get dicier. You could wear the hospital gown that snaps up the sleeve, ties at two inconvenient locations in the back, and generally displays your entire backside to the universe. If you are lucky, the ties will not also be scratchy, but I wouldn’t bet on it.

OR, you could, in 20 minutes and using no sewing at all, cut yourself out a wrap blouse that is way comfier and better looking than a hospital gown. I got this brain wave the night before going to the hospital last fall, made a couple, and then ordered some more fabric delivered and had a friend cut me out some more blouses (because scissors + tubes coming out of your arms feeding medicine into your body = unacceptable risk).

lots of jersey delivered to hospital room!

I’m a blouse size maybe 6, and think this could stretch to fit larger or smaller, but you should make a dummy blouse out of cheap fabric to test.

You’ll need 1.5 yards of 60″ stretch jersey–I find it works better with fabric that is a thinner and stretchier than an ordinary t-shirt, and also fabric where the back side is not a wildly different color (i.e., white) than the front side. Whatever you do, don’t use a rib knit or other slouchy fabric–that will make wildly immodest gaps on the sides of the blouse and generally look bad.

Here are your steps:

1) Fold your fabric in quarters. (For the first try you will want to use cheap fabric to adjust the pattern to your body).

2. Cut a small neck hole (little bigger than your actual head, as the jersey will stretch). Then cut a diagonal line towards what will be the armpit, only do not make the two triangles you’re cutting equal–the front and back flaps will need to be a lot bigger than the sleeves or you will have immodest armpit gaps.

your shirt, still folded in quarters. The neck hole is at the vertex of the folded fabric.

3. Unfold. You now have something that looks like a Coptic cross with the top and bottom pieces wider than the side pieces.

4. Put the head hole over your head and make sure one of the big pieces (not the sleeve) is in front.

5. Grasp the two corners of the front piece, bring them round your body, and tie them together in the small of your back.

Front piece corners’ tied at small of back. Don’t worry, your back will not be exposed like this after you pull down the back flap and tie its corners around your front.

6. Grasp the two corners of the back piece, bring them round to the front of your body, and tie under your bust. (As I am a “nearly A” bra size, I got away with wearing this without a bra, figuring it was more modest than the hospital gown anyway. If you are more endowed, you might want to figure out a bra you could put on without detaching the IV–such a bra would have to have hook-and-looks over the bra cups as well as a front closure)

back piece’s corners brought forward and tied under bust.

7. Kind of wrap each sleeve part around your wrist and knot it. This can be easily un-knotted for PICC access.

8. Wrap corners of each sleeve opposite ways around arm and tie at forearm. Or, if you get warm, untie the sleeves and let them flutter from your shoulders.

Just to recap the fabric info, because the fabric really makes the blouse–

Fabrics that work great: Fine jersey knit (a bit thinner than a standard t-shirt) with good stretch, good springback from stretch, and the color showing on both sides. Of course, a fun print never hurts! Fabrics that work ok: (and would be good for a trial garment to adapt the pattern to your body): knits that are about as thick as a t-shirt and are only printed on one side (with the other side white).

Fabrics that won’t work at all: woven (vs. knit), rib knits, or slouchy sweatery fabrics.

I wash the shirts in lingerie bags to keep them from getting all tangled.

Why I haven’t blogged in a long time

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So, the reason I haven’t blogged in a long time is that, in early December, I found out that my inpatient chemo had failed and that current medical science offers no chance of curing me–sometime in the upcoming weeks or months I’ll die of leukemia.

Well, ok, there is a super long shot chance of remission–I’ve joined a clinical trial, which has put a few people into remission for some period of time. But the odds of that are very, very low–single digit, in my guesstimate based on the nurse’s guesstimate, although my dad and boyfriend persist in being more optimistic. My main reason for participating in the study is that I just really hate leukemia, and what to do what I can against it in general. I can’t deal with the emotional whiplash of getting my hopes up about what the study could do for me–I’m sure if it puts me in full remission, I’ll cope with it just fine without extended preparation.

Anyway, facing very likely impending death, I decided to shift my focus to communicating with my friends individually, telling them how much I love them, and saying goodbye. It’s hard because I do have a lot of fatigue and a lot of friends if you count every era of my life, but I’ll do what I can and just count on the fact that, for those I miss, my friends already know I love them.

I’ve also been focusing on trying to think about Heaven, which is a bit hard because “what we will be has not yet been revealed,” but my sisters found some Bible verses about it for me for Christmas.

So, not much blogging likely to happen here for a while, except I do need to put up that design for a no-sew blouse you can take on and off while attached to an IV pole in the hospital. The world needs to know about that.

Peace and blessings!

Well, that was harder than expected

I will tell you no lie–the second couple weeks of my inpatient leukemia treatment were way, way, way harder than I expected. After getting over the nausea of the actual chemotherapy, I thought I’d be sitting pretty here, taking prophylactic meds and enjoying Johns Hopkins’ decent menu and reading novels.

Instead, at some point I started getting fevers and often shaking chills every night, which is not particularly restful. Also, as the fevers kept getting hotter and hotter, I had some throwing up just from anxiety, wondering what infection was going through my body while I had no immune system. At a certain point for a few days I calmed down because the doctor said the fevers could be just my bone marrow gearing up, but then they got high enough to make it clear this was not a compelling explanation. The doctors kept telling me, every time they came for rounds in the morning, that I was on the best prophylactic drugs they had.The worst night I had a fever of 40.1 C–don’t tell me what that is in Fahrenheit, as I don’t want to know.

The next morning, either because 40.1 is how the body says something needs to change, or because that morning I happened to get a new attending physician (they change every 2 weeks), they decided there was a drug they could swap out for something even better, and another drug entirely to give me. That night the fevers started going down, about a degree a day. Last night I didn’t have any fever at all–it was great.

One of the new drugs they have me on, ambisome, turned out to make me pretty queasy–keeping down food was touch and go for a couple days, which can be very tiring in and of itself. You spend an hour nibbling down a peanut butter and jelly sandwich, and then an hour later it all comes up again. (Isn’t peanut butter supposed to digest easily?) However, when I brought this problem up at rounds they added a third anti-nausea medicine. I wouldn’t say I actually get hungry at any point, but at least I can get in the nutrition without it being a grueling, all-day dispiriting enterprise. All the anti-nausea meds make me a tiny bit out of it, but they sure beat the alternative.

Toasted Rice Soup

I cannot guarantee that this soup will work for people in full-throttle chemo, as I have eaten it on Vidaza, which does not make me as queasy as other chemo. However, it’s worth a shot–the flavors are mild except the ginger, which is a good flavor for the queasy.
1 large packet fresh basil

1 jar ginger paste

1 cup brown rice (or white if you want super digestible/don’t want fiber). I recommend jasmine or basmati, which I found at Whole Foods

1.5-2 lbs ripe tomato

half a package of thin tofu skins

5 cups chicken or veggie broth (or water)

Coat bottom of heavy Dutch oven with Pam or olive oil. Spread ginger paste on there, layer on dry brown rice, cook on high for a few minutes until it ginger and maybe rice starts to toast brown. Then add basil, broth, and tomato, and cook until rice is cooked, at least 35 minutes.

If you are lucky enough to be near an H Mart (the giant Asian supermarket), see if you can score some of the tofu skins that are thinner than normal tofu skins, and seem to me a good way to get some of that protein you’re supposed to be packing in. The normal ones come in the refrigerated aisle folded up into packages maybe 6″ x 7″, whereas the thin ones tend to be on an unrefrigerated shelf and be in a larger package (much taller and wider than a sheet of typing paper).

I am a hummingbird. A very languid hummingbird.

Well, here I am on day 16 of my 4-5 week inpatient chemo experience at Johns Hopkins, hoping to achieve temporary leukemia remission so I might be eligible for a second “mini” bone marrow transplant (from a different donor) whose bone marrow might be able to take out my leukemia.

I’m pleased to say that my day 12 bone marrow biopsy showed no visible leukemia, which is a good sign–let’s just say there are a *lot* of hoops to jump through on the path forward I want, but so far so good.

In other news, it turns out that, just as my hair is falling out from the chemo (which ended on day 10–now they just keep me several weeks to get me through the side effects of the chemo), my villi (those little finger-like projections inside your gut which absorb nutrition) have also taken it on the chin. I’ve been put on a liquid diet for a while, perhaps until day 20 (Wednesday). So I’m thinking of myself as a hummingbird, insofar as I mainly drink fruit juice. But not the kind of hummingbird that actively darts around all the time. More the kind that slumps in chairs during the day and makes herself take a walk round the ward a few times each day to avoid getting deconditioned.

My lack of blogging recently has been partly just because it takes a *long* time to eat and I like to read while doing it to take my mind off the queasy. But also partly because of the good reason that my older sister has been visiting, and when she leaves my younger sib and her husband are showing up. Thanks, family!

Sometime in the next few days I hope to blog about the wrap blouse I developed that involves no sewing and can be taken on and off while your PICC line is attached to the IV stand–needless to say, they leave the line attached 24/7. Maybe it’s the IV stand union or something.

Well, THIS isn’t good.

Haven’t been posting much the last month, because my blood counts were in a slump and I didn’t want to worry relatives who might be reading this. But now that horse is out of the barn door, since a bone marrow biopsy this week showed that, five months or so after my transplant, my cancer has come back. I won’t know until Thursday what the docs at Johns Hopkins are recommending for me.

Obviously, this sucks. It is really not what I wanted, and I was just starting to think that this whole crazy transplant vs. cancer thing might really be working out in my case.

I feel a weird sense of clarity, kind of like what I felt when I got diagnosed with this cancer last year. Partly it’s that I clearly need to focus on short-term goals: eating (I lost a few pounds in the last month of suspense, and keeping my weight up is important), staying connected with people, and being careful to avoid germs, and any risk of hitting my head while my platelets are so low.

Partly, though, it’s because I woke up Friday morning with the following song lyric running through my head:

In the shadows, frightened, we deny you, hiding, locking all our doors
But when you find us, you remind us–
You say, “All I have is yours.”

It is a good song (“Won Our Hearts”), and people should check out the album, by Chris Hoke/Tierra Nueva, on iTunes. Sometimes the recording quality is a little homespun, but that is because Chris is busy working on life-changing Bible studies with imprisoned gang members.

To be honest, at this particular moment I’d rather have more of a Proverbs/Psalms kind of vibe, with God healing my body and giving me long life here on earth and (in my case, adopted) children. And that could still happen–possibly through medicine or, as always, if God wills it. I’m certainly not giving up on either. But this song is what I get right now, so I’m sticking to it.

Raspberries with melted fair-trade bittersweet chocolate on the side.

I’m also taking this time to enjoy fresh raspberries (miraculously still available at the farmer’s market today though I didn’t get there till noon), not to mention showering without any tubes coming out of my body. Because everyone should enjoy those things.

…

HECK yes, you need health insurance

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Two weeks from today you can sign up to buy individual health insurance even if, like me, you’re a cancer survivor who would have had a zero chance of buying an individual policy under the current system. I say: good, because you need health insurance. This. Means. You.

This isn't about your feelings on Obama--it's about your feelings on unforeseen medical emergencies.

This is about *unforeseen medical emergencies*, not Obama.

I think it’s a shame that health-care reform has been labeled Obamacare, because then people project their feelings about Obama onto it. (Personally, I support many of his policies, but I’m strongly opposed to the killer robots.) But I strongly support the U.S. federal mandate–and subsidy–for uninsured individuals to get health insurance, which kicks in January 1 of next year.

I say this because, back when I was 34, it would have seemed reasonable for me to not have health insurance: I have never smoked a cigarette or been overweight in my life, and I have long eaten a diet rich in fruits, veg, and whole grains. Then I got cancer. Twice. No clue how I’d have paid for the chemotherapy or bone marrow transplant if I had not, fortunately, had good insurance at my job. What’s more, it would probably have taken a lot longer for me to get diagnosed in the first place if I’d had to pay out of pocket for primary care, and thus been reluctant to go pay for a doctor visit just based on a slight persistent cough and general run-down feeling.

It’s also true, by the way, that insurance companies have a fiduciary responsibility to their shareholders to try to avoid selling cancer survivors like me health coverage. Fortunately, I love my job and don’t particularly want to be self-employed, but if I wanted to start my own business before 2014 I’d be completely unable to because, as I mentioned already, I’m super aware of how people need health insurance.

I don’t blame health-insurance corporation officials for doing their jobs, but I am sure glad that, starting in 2014, the government is doing its job of requiring companies to sell insurance to people like me with pre-existing conditions. And that only works if everyone is required to have insurance, because that’s how insurance works. (Thanks to Obamacare, children with pre-existing conditions are already able to buy insurance.)

I’m pretty peeved that all of this has become a political football. Please read how health-care reform actually works, and if you don’t have insurance, sign up for it instead of taking some kind of principled stand for your right to freeload off the system if you ever get a serious illness.

What to Read in Chemo (if you like sci fi)

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If you are going to get chemo or a bone marrow transplant, you will probably be spending a lot of time with low physical and social energy. You may also be in the market for some distraction from the whole “will this cure me?” and “holy mackerel, my stomach is queasy” trains of thought. You could watch tv, but, having been through it earlier this year, I recommend spending the bulk of your distraction time (times when you do not have energy for prayer, email, or conversation) reading. It’s more calming.

Here’s where, as someone with an Ivy League Ph.D. in literature, I have a golden opportunity to urge people to read Middlemarch, except that in my opinion that is the exact wrong thing to read during chemotherapy. (Well, technically, the exact wrong thing to read is Thomas Hardy’s Jude the Obscure, which also happens to be the wrong thing to read in almost *every* context–that book really puts the “ick” in “Victorian.” My deepest apologies to the one class I forced to read it. I don’t know what I was thinking.)

My point is, right now you’re looking for something light and entertaining, possibly something that you read and enjoyed some years back. One friend suggested the Father Brown mysteries, but as I am more a sci-fi fan, here is my favorite list. Hope it inspires a list for you!

-The Thursday Next series by Jasper Fforde, about a woman who comes to work at Jurisfiction, the policing agency within fiction. My favorite scene is when she and Miss Havisham have to take a turn running the rage management group in Wuthering Heights. You could skip this series if a near-endless series of silly jokes does not compensate for you for a lack of consistent characterization, but I find the jokes and brisk if ridiculous plots to be just the ticket. Forget about suspending your disbelief–just expel it altogether. You’ll be glad you did.

-Urusla le Guin’s The Lathe of Heaven and, well, pretty much all the rest of her sci fi (except for Vietnam-protest The Word for World is Forest). These novels might not technically qualify as light reading, but I love le Guin’s prose too much to care.

-The Heinlein juvie novels. I agree with few of Heinlein’s politics, many of the ’50s-era assumptions are laughable, and he went a little nuts with the semicolons sometimes, but darn he could tell a story. The editors at Scribner’s kept his juvies free from the pointless sex and shapeless plots that mar many of his later novels.

-The Chronicles of Narnia. Could skip The Horse and his Boy and The Last Battle if the racism pisses you off too much.

-The Harry Potter series (possibly skipping the last book or two).

-John Scalzi’s Fuzzy Nation. Want a probing, nuanced tale of how first contact with an alien species could go wrong? Then read Mary Doria Russell’s The Sparrow and Children of God. On the other hand, if you want something lightweight and fun (yet not as dated as the 1962 H. Beam Piper novel it’s based on), read Fuzzy Nation.

–Unwillingly to Earth by Pauline Ashwell [aka Paul Ashwell, aka Paul Ash], which has a bit of a Podkayne of Mars feel to it, except I like it better than Podkayne because the wide-eyed girl character was not written by a dirty old man, and nobody says that women who have careers are failing their children. Ending’s on the dated side, though (parts of the novel were written as far back as 1958). Might be hard to get hold of.

-Connie Willis’ To Say Nothing of the Dog is a middleweight time travel romp set mainly in the Victorian period and the screwball-comedy genre. Hyperbole-phobes should avoid it. (Note: Willis’ other time-travel novels are *not* romps, especially Doomsday Book).

-Connie Willis’ Bellweather, an almost too lightweight romp about historian/scientists, with a side order of anecdotes about silly fads past and present.

-Janet Kagan’s Mirabile is a collection of short stories set on a planet settled by Earthlings. The folks who originally sent out the colonizers had the bright idea of burying extra species’ genetic code in the junk DNA of Earth plants and animals sent along, so every once in a while random animals and/or hybrids pop up and need to be dealt with. Put aside the horror that you’d actually have about introducing Earth animals into a functioning alien ecosystem to begin with, or the question of how a mostly agricultural society can manufacture all this advanced gene-reading equipment, and just enjoy the antics and love story. Not in print, but hey, everything’s bound to be an e-book soon, right?

Frederick Pohl’s O Pioneer! This slim novel is about a hacker turned mayor on a planet colonized by humans and five other species. It’s pleasantly lightweight, milking a lot of humor from bad translation software (though the genealogy of this is obviously in “foreigners speak funny” tropes, I can live with it transferred to software). Written in 1996, the novel evokes a little eye-rolling with its emphasis that look–the couple next doors are lesbians! Not that there’s anything wrong with that! Whatever.

-Neal Stephenson’s Anathem. This one might not be to your taste–it’s a 900-page yarn set on a semi-Earthlike planet where there’s a millennia-old tradition of institutions that function rather like monasteries, except in the service of academic knowledge rather than theism. There are a number of dips into epistemology and such, and the ending is a bit hard to follow if you are distracted by medical anxiety, but by and large Stephenson manages to heap tall tale on tall tale enough to make what I consider a very satisfying read. There are also great flashes of humor, as when he explains that the unit of false information on the planet’s internet-analogue is the “bogon.”

John Barnes’ A Million Open Doors. Far-future story in which planetary cultures have been set up by people obsessed with art or religion, and a protagonist from the troubadour planet winds up on the Protestant Work Ethic planet, where the capital city is Utilitopia and Adam Smith is revered as a martyr. There are duels and romance and the plot goes by so briskly I’d read it three times and was halfway through teaching it before I realized it’s also the most fun defense of Keynesian economics that has ever been, or ever will be, written.

WARNING: The next book in this series, set during the protagonist’s midlife crisis, is interesting but depressing, and some of Barnes’ other novels outside this series have pretty gratuitous (though not approving) scenes of rape. (John Barnes has noted in an interview that his Duke of Uranium series, an attempt to imitate the Heinlein juvies, didn’t go over well. Hint, Mr. Barnes: maybe it’s not that the crisis-every-25,000-word pattern is dated; maybe it’s the *icky unconsensual sex* you put in.)

Paper hats for everyone!

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As, post-transplant, a single sunburn poses a small risk of actually killing me, I’ve been spending a lot of time gathering data about ultraviolet light. Indeed, I just sent away for UVA and UVB meters so I can get some hard data about just how much ultraviolet is around, and how well my expensive uv-screening shirts work–stay tuned.The one item that is a clear fashion win is a hat. Below are my favorites.

I haven’t got my meters yet so I don’t know the relative sun-busting merits of different hats, but I have tested these babies for how well they stick on my head. The results? Though the straw hat (brown one in lower left) looks classy, it blows off in the slightest breeze–the sunscreen effect is not so useful if you have to constantly put your hand on top of your head, as my hands (like so many people’s these days) happen to be covered with skin.

The ones that stick on best are, according to the labels, made of paper–I would not have guessed this as they look like they’re made of some kind of slightly-wigglier-than-usual straw. They are certainly not like the paper hats I folded for myself as a kid. However, now I know, so I cordially invite you to go buy yourself a paper hat. Great for sunscreen, staying cool, and having the Target checkout lady tell you you look “wicked.” (“You know that was a compliment, right?” she asked. “Yes,” I lied like a cheap rug.)

The three extra big stripey ones are all by the same maker, Papillon, and I got them from a street vendor at the Ballston metro stop ($12, bargained down to $20 for two). Saw the same thing in Union Station for $20. Really, I think it’d be worth it even at the higher price. One size fits my slightly-larger-than-average head nicely, so it might flop off the smaller-headed if they have a sleek hairstyle.

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.

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?'”

Prayer, Science, and Pointy Things

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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.

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.

Five Stages of Chemo Hair

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.

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.

Moment for Celebration!

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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.

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!

Home at Last! Also, I’m a Vampire.

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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…

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.

Hickman Catheter Date Strip Art!

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!

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

The 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.

I’m Normal! (ish)…

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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 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.”

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…

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.

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 ziploc 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.

Mhaaaaa-ROWR! I’m a Chimera

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!

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.

Your Results May Vary

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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.

Although 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.

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.

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.

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.

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

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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.

Welcome, Phil II!

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Congratulations, doctors and me–it’s a bouncing baby Phil!

I’m delighted to say that, in the last few days, there has been growing evidence that Phil II is starting to wake up and kick into gear. My immune system is still quite weak–the [neutro]Phils, or first line of defense against infection, are still less than half the normal range of 1500 to 7800 per cubic millimeter. The rest of my white count, which has not been stimulated by shots like Phil has, is functionally nonexistent. But all this is a heck of a lot better than the “less than 50” reading (which is the lowest reading available) I’d been getting for about two weeks, and it means that the donated marrow is probably waking up (testing in a couple weeks will show how much of the marrow is original flavor, and how much is the grafted donation).

I still have to wash my hands a lot, but the doctors have already let me off several of the precautionary medications (antifungal, antibiotic) that they had me on while I had little immune system. So long, Polly!

Don’t Have Phil, Just Polly. And Faith.

Readers of this blog are aware of my on-again, off-again relationship with my neutrophils (first-line disease-fighting white blood cells), which I collectively call Phil. If the transplant works as expected, I’ll wind up with a bloodstream teeming with Phil II (cells made from my donor sister’s bone marrow, which will, Lord willing, gobble up the malignant cells in my own bone marrow).

When I finish tapering off the antinausea drug, I’ll only be taking *15* medicines! Unless they start me on something else.

However, since the transplant process starts with serious suppression of my normal immune system, right now (at day 14 post-transplant) I’m in a period where neither Phil is anywhere to be seen–literally at undetectable levels, as the blood counts they do on me daily show. Hopefully, in a week or two my counts will start to come up, heralding the arrival of Phil II and all his platelet and hemoglobin friends. Right now (and for the past week or so) I’ve been getting platelet transfusions, washing my hands a LOT, and meditating up close and personal on “the assurance of things hoped for, and the conviction of things unseen.”

In the absence of Phil, the good folks at Johns Hopkins are offering me Polly to keep me company–well, really Poly. Polypharmacy, that is: the practice of giving people a whole lot of different medications (antifungals, antibiotics, anti-rejection drugs) at one time. I think I’m on literally 16 different medicines right now. The pharmacy folks gave me a handy chart of when to take them, which my caretaker sister reorganized into an even better chart, and we got this giant seven-day four-compartment-a-day pill case to keep them corralled.

Still and all, I’d rather have Phil. I hope and trust that those marrow cells are working away setting up housekeeping hidden within my bones, but seeing the numbers come up (and having an immune system) will be good.

There Will be Beeping. Oh Brother, Will There be Beeping.

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The orientation nurse assured me and my caregiver sister that most everyone gets at least one fever during the you-got-no-immune-system part of the transplant process. My sister and I immediately developed a plan to, if I got no fevers, be smug.

So I felt some chagrin when on *Day Zero*, right smack out of the gate, the very evening of the day I got transfused with the donor cells, I got a fever.

Into the hospital I went, which meant that I was surrounded by caring and skilled medical professionals offering me lifesaving treatment and round-the-clock monitoring; that I had the ability to phone up and order surprisingly decent food delivered from the hospital kitchen to my room; and that I was chained by thin plastic tubes to an IV machine that WOULD NOT STOP BEEPING.

More precisely, it would go along for some time merely making whiffling noises as it metered out my saline solution or medicine, and then it would inevitably break into a beep loud enough to wake the dead, or at least the hospitalized. There were several annoying characteristics of this:
a) It was the same beep regardless of what was wrong–possible obstruction in my line, maybe getting to the end of my bag of chemotherapy, or whatever else the machine had a problem with.
b) It was clear that the loudness of the beep was not in proportion to the urgency of the problem, as it never summoned nurses to run in with a look of concern. Instead, it would just beep away as I found my nurse call button and pressed it so that the main nurse desk could hear my beeping, and at some point a nurse would walk in and press some buttons to make the beeping stop. To be fair, this meant the machine was already doing a great job of keeping air out of my line, so kudos to the machine makers there.
c) Every time I needed to go to the bathroom–and, as my time in the hospital included Days 3 and 4, when you get serious chemotherapy, I needed to go a lot–I had to not only tie on my shoes (my self-imposed strategy for not tripping and falling on my head), but also unplug the IV machine and chivvy it along with me, making sure not to stretch the IV cord that connected it to the catheter in my chest. It was not a fun contest to see if I could make it through all these steps in time. They literally never detach you from the IV machine while you are inpatient.

Long about Wednesday my fever broke and they released me back into the little apartment my sister and I are staying in next to the hospital, so I’m only attached to a machine for a few hours a day in the outpatient unit, when I’m actually receiving medicine. This provides me with a better vantage point from which to contemplate the amazing medical care I am getting.

Thanks, caring and skilled medical professionals!

I am getting my bone marrow transplant right this very minute

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Wow, this is probably the only transplant experience which one can actively blog through! Even corneas, which might be done under local anesthesia in some cases, don’t leave you sitting around free to use the wi fi.

Life-giving cells wend their way through tubes into my bloodstream!

But here I am lounging on this gurney like Cleopatra on her gilded barge, typing away on my ipad. Also, the gurney head goes up like a deck chair, and my non-donor sister is at hand to fetch snacks.

They run the marrow through a tubes using gravity alone, to keep the cells from being tumbled about and mussed. This leaves me plenty of time to meditate on how much marrow they got out of my donor. They are putting 1.5 liters into me, and very little of that is diluting stuff. How big are hip bones anyway? Family report says she is resting comfortably with no pain.

Because my donor was getting prepped for surgery this morning, she wasn’t there this morning when my caregiver sister, our dad, and I all got communion from the Weinberg cancer center chaplain. I really feel like I’m having my own personal secular Easter–lifesaving blood shed for me.

p.s. Dr. Concerned stopped by to say hi while I’m here too!

The Fire This Time

Image under Creative Commons license, Some rights reserved by Crazy Uncle Joe-MoPho

One way it’s no fun at all to be interesting is medically interesting. In getting set up for my bone marrow transplant I found out that the fact that I have a bit of radiation damage to my spinal cord, after the 40 gray of radiation treatment that helped cure my Hodgkin’s lymphoma in 2006, is just downright weird. Fortunately, it’s not a huge deal–my left foot is clumsy and I walk my mile a day with a cane to prevent myself from tripping periodically. Forty gray (yes, the standard unit of radiation makes me think of those big-eyed aliens from the X Files) normally doesn’t do that. Ergo, apparently, my personal system is weird and unusually susceptible to radiation, perhaps in some way linked to my family history of autoimmune disorders.

After a bunch of high-level consultations, Dr. Concerned and the other folks at Hopkins decided to leave the radiation (and the chemo agent Fludarabine, which can have neurotoxicity in rare cases) in my treatment plan. I was kind of relieved to hear this, since a pristine nervous system wouldn’t do me a heck of a lot of good if I died of leukemia.

Today I got the standard radiation–a lousy 2 gray, which is probably pretty unlikely to make my spinal cord worse. (Although they can’t tell me how unlikely, because I’m *interesting*!)

The process itself was pretty anticlimactic. First they dosed me up with Zofran (anti-nausea) and Ativan (anti-nausea and anti-anxiety), then they had me lie on my side on a gurney while they prodded me to exactly the right location. I would have thought it’d be easier to get someone arranged if they were lying on their back (as I was in 2006) vs. lying on one side with one arm under one’s head, knees bent, and the other arm straight out over one’s hips, but what do I know? Also, the arranging has to be done in near-darkness for some reason, like the start of Easter Vigil or a scene change during a play. I think they were lining me up with red laser beam markers. Eventually they covered me with a couple warm blankets, put a piece of tape from the wall to my shoulder to remind me to stay still, taped a radiation measuring gizmo to my back, and turned up the lights while a loud, protracted buzzing noise heralded the radiation. Eventually it gave way to a softer background noise halfway between a waterfall and someone fruitlessly trying to play a tune, wine-glass style, on shot glasses.

Then the arranging folk came in, wheeled the gurney around 180 degrees, had a bit of lights out prodding again, moved the radiation metering thing and put what may have been a protective thing on my neck, and wheeled what looked like a blackboard made out of plexiglass between me and the big radiation machine, which I could now see. It looks like the receiver of an old telephone, if the receiver were at least 15 feet long, and if half of it were melting into a modernist sectional sofa. I gather the radiation came out of the intact receiver end, which didn’t have a bunch of holes, but rather one big hole over which a couple black squares were affixed for reasons I never grokked. After it buzzed at me for another 20 minutes they came in to disentangle me and lower the gurney to the floor and tell me I was free to go.

I waited, however, until one of the techs came back so I could confirm with him that when, at the end, he’d said “oh no,” that was not something that had to do with my treatment, but rather with him pushing an unrelated button afterwards (I theorize he prematurely turned off the waterfall of shot glasses). Medical professionals, please use caution in saying “oh no” in front of people in treatment!

So now we’ll see what kind of aftereffects show up. I think nausea is expected, and fatigue. And being ready to receive a bone marrow transplant.

Biopsy Wait Hymn Sing

Did you know that the median wait time for biopsy results is all eternity? Ok, technically that’s the subjective wait time, but still and all. I noticed this most recently late last month when waiting for my bone marrow biopsy results to come back.

Obviously, they came back good enough to go ahead with the transplant, as I just got day 3 of chemo in preparation for my transplant Friday. At the time, I was in the throes of packing for two and a half months (and also attending Holy Week services), so I didn’t get to share the following insight:

When trying to get to sleep while waiting for biopsy results, it is obviously a bad move to lie there thinking about your biopsy results. One (not completely obvious) way to possibly avoid this is to go over hymn lyrics in your head. I found the following hymns helpful:

What a Friend We Have in Jesus
I Want Jesus to Walk with Me
It is Well with my Soul
Amazing Grace

Basically, something that can have a slow tempo and that you know the words to is good. If you are not into Jesus you could try other songs, although presumably, say, metal might be less likely to work.

Chemo multitasking–not so much

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Well, my caregiver sister and I are settled in here in Baltimore, I got my catheter in Friday, and I started chemo yesterday. Today is day T-5, meaning that my transplant will take place on April 12.

I had been planning, once settled in, to immediately start catching up on email and blogging, but it emerges that, while the catheter placement was a walk in the park (twilight anesthesia is like the best yoga class ever), multitasking during chemo is not as easy as I’d thought. In order to keep my eating and drinking going ok (as there is some definite queasiness going on already), I’ve found it best to just read novels (or watch Downton Abbey) rather than engage in the slight amount of mental concentration involved in email or blogging right now.

Top of the roller coaster

Well, all systems are go for my bone marrow transplant! I move to Baltimore on Thursday, get a catheter in my chest on Friday, and start the pre-transplant chemo regimen on Saturday. Total body irradiation is Thursday 4/11, and the big T is Friday 4/12. The whole thing is outpatient (barring any infections or other miscellaneous problems), but you need to be within an hour’s drive of Hopkins, so my home in DC will not do the trick.

Lots of people are on board praying for me, and I suspect this is why I’m not feeling panicked. I am a bit on the antsy side, though.

Drumroll please…

Well, I got my bone marrow biopsy on Thursday (along with a bunch of other tests), and sister who’s donating to me got a bunch of tests. The results we have so far look fine, so the key thing will be my bone marrow biopsy. If it shows that the Vidaza has decreased the amount of malignant cells, as I think is likely, we’ll go ahead with the transplant. I should hear sometime between Monday and Thursday morning (when I and my dad meet with the MDS specialist at Hopkins).

In between now and Thursday, the radiation oncologists will do some last-minute consulting about the total body irradiation part of the prep regimen, given my pre-existing radiation damage to my spinal cord (damage about which I’m not complaining–the lymphoma never came back, after all, and I can still walk a mile a day with a cane for balance).

I feel like I’m at the top of the roller coaster…

Moment to Cherish: Stuffed White Blood Cell

My friend CarolAnne just gave me a stuffed white blood cell! I immediately named her Bianca. She (Bianca, not CA) is from the U.K., so I imagine her speaking with a British accent. CarolAnne even “baked” her in the dryer to prevent any normal-sized microbes from hitching a ride. Isn’t that thoughtful? Think I’ll put her on my desk as a visual prayer aid.

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.

Obviously, that’s not what Jesus would do. We know what Jesus did — he offered you his lifeblood, saying “This is my blood of thecovenant, 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

The Marrow Road

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[I just got around to asking Sojourners’ blog editor if I can reprint here blogs I post there… here’s something I wrote last December. In the meantime, I found out that my bone marrow donor *will* have to have the donation taken out of her hipbone–turns out that’s how they roll with haplo transplants at Hopkins, at least in my case. So I was wrong there.]

I’ve been thinking, as Advent goes on, what it meant for God to lay aside infinity and put on a body that was not just tiny, inarticulate, and helpless, but also already marked, to the marrow of its little bones, with the seeds of death.

He must have felt in his own flesh this dramatic comedown — from omnipotence and omnipresence to a being that had about threescore and 10, max, even if it hadn’t going to be cut off halfway by self-sacrifice and Roman capital punishment. And that must have given Jesus infinite tenderness and patience towards the waves and waves of people who, during his short ministry, were always coming up to him and asking, directly or just by their presence, for him to heal their bodies. In Luke, the Gospel focus of the new liturgical year, there are more than 20 healings by my count, compared to two times when someone asks Christ how to get eternal life (and only one of them actually wanted to know).

Those healings of all those bodies matter, millennia later. One big reason they matter is because healing matters. Another is because, by showing God’s power over death as well as by going through death ahead of us, Christ teaches us not to be dominated by fear of it.

All this is very personal for me. Nearly seven years ago, in April 2006, doctors gave me super-intense chemotherapy to cure my Hodgkin’s lymphoma. To help me survive the process, first they froze some of my stem cells (essentially, bone marrow, except that they filtered them out of my blood — actually drilling into bones is so 1990). Then, after the chemo and three days after Easter, they re-infused those cells back into my body to restart my bone marrow. I remember watching the tiny pink bag dripping through the IV, through which the seeds of survival would swim back into my veins, and then into my bones. Day by day, those cells moved invisibly inside my body, to grow and thrive.

Thanks be to God and to a lot of great nurses and doctors, they did cure my lymphoma. But now, as a late-breaking side effect, I have a different kind of cancer. (Yes, this sucks, but I’m still better off than if I’d died of the original cancer several years ago). So now, if all goes well, next year I might be spending another Easter in the hospital getting my own personal immunological rebirth. This time the point is to give me stem cells from a relative — cells that, Lord willing, will have an immune response that kills my cancer.

In my case, I have two siblings and a parent who are close enough to be stem cell donors — but there are many people in my shoes who don’t. That’s why, this Advent, I encourage everyone between the ages of 18 and 44 to consider joining the national bone marrow donor registry. It only takes an online survey and mail-in cheek swab to join. (Notwithstanding the name, in the unlikely event you’re matched and get the opportunity to donate, there’s usually no bone-drilling or anesthesia — just a series of shots to make your marrow overproduce into your blood, and then sitting next to a machine for a few hours while it filters out those lifesaving extra cells. I did this for myself back in 2006, and my main symptom was boredom).

As we prepare to celebrate God’s arrival in human flesh, as we start the liturgical year’s journey through a ministry in which Christ heals people’s bodies as well as their souls, there’s no better time to sign up to offer others the gift of life.

Reprinted with permission from http://www.sojo.net.

My small bit to fight individual obsessiveness/national medical costs

Although, as I’ve mentioned here and to anyone who’s asked me how I’m doing for the last five months (and a lot of people who haven’t), I’m pretty obsessed with my blood counts. So I am a bit proud of myself that today–when Dr. Virginia did not order counts for a routine checkup (because I had counts last week and will have more next week), but then said he could do counts if I really wanted to–I said no. It wouldn’t change my treatment any, and Dr. Virginia had just said he was fairly sure the Vidaza was working at least somewhat, so the mature thing was to not get more holes poked in my arms and more of society’s medical resources used up.

Of course, it’s a drop in the bucket compared to the necessary medical costs I’m incurring, but necessary things are what medical resources are there for.

It’s also a drop in the bucket compared to my general obsession with my blood counts, as witness my spending way too much time this evening making a scatter chart of them. These give my counts across the 28-day cycle as a percentage of day 1 of the cycle. For cycle 3 I had to extrapolate what day 1 was, as I only had days 5, 9, and 22.

cycle 3 = blue diamonds; cycle 4=red squares; cycle 5=green triangles. There was an extra month between cycles 3 and 4 (hence the stat for day 35).

See, the platelets have a nadir around day 16 or so, while the white counts have a nadir around day 28 (i.e., the time the next cycle starts, except in cycle 3, which had an extra week tacked onto it for Christmas). Cycle 4 (the red squares) is an outlier because that extra week let my counts come out of the Vidaza-side-effect slump. I’ve got my chart all set up to insert the data for cycle 6 and see where that goes…

Mailing Blood to Baltimore

Good gravy, what does a girl have to do in this town to get her blood mailed to Baltimore?

Now that Johns Hopkins has decided on my donor–my older sister–it reminds me of the saga of how the whole decision process got started, back last fall. Hopkins needed a blood sample. My mission: get the blood drawn and get it into Fed Ex.

It all started off fine. Hopkins sent me a nice box with empty vials, instructions, and a prepaid Fed Ex medical sample shipment bag. Kaiser Permanente’s lab told me (I’m 90% sure) that they could put my blood in Fed Ex for me after drawing it. I took the Metro down to their swank new Capitol Hill location at lunch one Wednesday last month. Kaiser’s lab has a little ticket system with an electronic sign, like a high-tech deli, to tell you when the phlebotomist can see you now.

A box of blood! Garlic to deter vampires optional.

After drawing my blood, though, the phlebotomist said she couldn’t Fed Ex it for me (in contrast to one of my sisters, who got told she could not under any circumstances take custody of her blood after it left her body). No problem—there’s a Fed Ex/Kinko’s on my way back to the office. I took the box there.

Attention, Fed Ex at 14th and Irving: this other branch closed down a long time ago.

This is the point at which things became a wee bit trying. The Fed Ex folks said they couldn’t take it because it was a medical sample, and said I had to go to a full-service branch—they said the closest one was out near Catholic U. Fortunately I checked this when I stopped by the office to rehydrate, and I found out that a) there was a full-service branch on I St. & 14th that would be much faster to get to, especially since b) the branch they sent me to *didn’t exist anymore.*

After I shlepped 20 minutes each way to I Street, a competent helpful person took it, gave me a receipt, and told me there was no reason why the Keystone Kops at the Fed Ex near my office couldn’t have taken it, as it was already in the right package.

For some reason, the whole thing was more upsetting in person than it seems now that I write about it. Maybe there’s something visceral about carrying around your own blood, knowing that if it fails to get to Baltimore the next morning you’re going to have to go get three *more* tubes taken out. At least they were little vial tubes, not the poster mailing tube my younger sister whimsically imagined when I told her what would be in her kit.

Glad I’m not a vampire. Blood transport is exhausting.

Culinary Epiphany

As I look forward, God willing, to my stem cell transplant, which will involve significant nausea, I have realized something with complete clarity: The only reason why I should not eat Indian food every single day for the next month and a half is to make room for Ethiopian food.

Transplant, probably. Sushi, probably not.

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photo under Creative Commons license from Lotusutol: www.flickr.com/photos/lotusutol/13075942/

photo under Creative Commons license from Lotusutol: http://www.flickr.com/photos/lotusutol/13075942/

Well, yesterday I talked to an MDS specialist at Hopkins (whom I do not have the energy to give a snarky nickname), and got moderately encouraging news. Let me, right up front here, say that, as is the case with all my major oncological appointments, I did feel as if my brain was working about as fast as I could run through hip-deep molasses. Although Dr. No-Snarky-Nickname is an excellent communicator, I probably got some things wrong as the mistaken preconceptions in my head collide with the words that were actually being spoken aloud.

On the plus side, it sounds as if we are likely to move ahead with the transplant, probably in April, although everything depends on a battery of tests in March. It appears that this transplant will be way less likely than my original autologous transplant to lead to secondary cancer in the future (or more precisely, as this is treatment for a secondary cancer, a tertiary one). So, yay for that!

On the downside, though my platelets were up some more, my white counts were down and (before he even saw them), Dr. NSN didn’t offer the effusive, definitive statement I wanted that my MDS can be classified as “responsive” to the Vidaza, which is a glorified status that lets you get your name in the paper, win concert tickets and other valuable prizes, and breeze past airport security without even taking off your shoes. Seriously, though, it is even better than those things because, apparently, MDS that responds to Vidaza also tends to respond better to other treatments (although this is all possibilities, and My Mileage Will Vary). Dr. NSN allowed as how If I had blood counts that were normal, at least for part of the month, would count as a sign of responsiveness, but the real gold standard is the bone marrow biopsy, which I’ll get in late March.

Dandy blood counts before that might be unlikely; my white count was down to a pitiful .7 yesterday (and again today at Dr. Virginia’s when I went for Vidaza). This strongly suggests that the big spike I had in early January (to levels I hadn’t seen since 2011) was only made possible by a confluence of two–count ’em, two–factors working together: 1) Vidaza’s primary effect of making my MDS less, and 2) the extra week I got between Vidaza cycles at Christmas, which gave me a break from Vidaza’s side effect of lowering white counts.

Disappointing white counts, but platelets keep going up.

Since Dr. Virginia says he wants to continue with the Vidaza full steam ahead–stomping on the malignant cells in my bone marrow is the most important thing–I fear I might not get up into the normal range again this month. There go my visions of going out for sushi, eating freely of salad, and attending crowded parties a bunch for the next couple months.

How’d ya like those data?

I love data–it’s fun to hunt down patterns in them. (Yes, “data” is a plural noun–this notice brought to you by the Rear Guard Linguistic Change Resistance League). So, needless to say, I’m obsessed with my blood count spreadsheet:

Green vertical lines are the start of a Vidaza treatment–for me, that’s seven weekdays in a row, every 28 days.

The Vidaza affects my counts in two ways. One, it demethylates my DNA so my body better fights the malignant cells that were making my blood counts fall. (I’m still thinking of this as mentholating my DNA and making it minty fresh, but I’m going to look up the chemistry any day now). The biggest disease symptom I had was lowered platelets–you can see in the lower graph that they were falling steadily before my first Vidaza treatment (the first green line), and overall they are trending back up.

The second way Vidaza affects me is by suppressing my blood counts. This gives me a “nadir,” or low point, after each treatment–in the case of the platelets, you can see that the low point is maybe 2 or 3 weeks into the four-week cycle.

But in the case of white blood cells of various kinds, the top chart, the nadir seems to be about four weeks into my four-week cycle. Every month, the white counts finally start to climb up a bit during the first week of the Vidaza treatment, then head down again as the Vidaza shots continue and the side effect gears up again.

Over Christmas, I got an extra week between cycles 3 and 4, so I could go home and visit my family for the holiday. Right afterwards, my white counts shot up–all the way into the normal range, higher than they’d been since fall of 2011. So, the good news is, that means that the Vidaza is pretty clearly working! That’s the main thing.

As I started to head towards my regularly scheduled nadir, my white counts took a plunge again. To put things into perspective, my white count low point last week was about the same as my high point the month before, so that’s not bad. Here’s the question, though: will I get a big white count peak again next week, due to the Vidaza having kicked in? Or, was the big peak made possible partly or mostly because I’d got a week off?

My counts next week will tell which is stronger, countswise: the primary Vidaza effect or the side effect. Either way, I hope I get the transplant (I’ll find out more when I go see the expert on Monday). But it would be nice to have high counts and the ability to eat salad and so forth for a little bit before I go for the heavy duty stuff.

Honor MLK. Support a $15 minimum wage!

“Don’t call me a saint,” Dorothy Day said, “I don’t want to be dismissed that easily.” Martin Luther King Jr. certainly deserves to be as famous as he is, but it seems all too often that, as he becomes something like a national saint, his name and two or three phrases from the “I Have a Dream” speech get bandied about way, way out of context.

This is from 1963. Haven’t done in-depth research, but I’m pretty sure the Poor People’s Campaign didn’t demand *less* government intervention…

People who know way more than I do, such as Vincent Harding, have written about this, but I’d just like to point out that one official demand of the March on Washington for Jobs and Freedom was a minimum wage that is the equivalent of $15 an hour in today’s dollars (see snippet of press release at left).

To see the rest of the March’s demands, surf on over to the library of Congress and see p. 29 and 30 of this document collection.

Sorry to go off topic! I’ll try to keep it to a minimum.

Bit of a Dip

Well, I’d hoped that the fact that the Vidaza is kicking in (having its intended effect of decreasing malignant cells in my bone marrow) would overcome the fact that my blood counts normally dip in the middle of the month (because the side effect of Vidaza is to decrease blood counts). No dice–the dip, it is there:

You can see the recent dip at right, and its three predecessor dips stretched out to the left.

Phil (the purple line) and I were still on good enough terms that I could eat some lettuce yesterday, but I should probably err on the side of caution and have a salad-free weekend.

My 28-day Vidaza nadir–it’s the new Mr. Monthly.

Whoo Hoo!

Hey, blood count fans–great news! When I got tested today at Dr. Virginia’s, I found out my white blood count has tripled in the last week, and my neutrophil level gone up sevenfold. (Warm welcome back, Phil!)

Lookit those white counts climb–go, prayer team, go! Normal WBC is 3.5-10, and normal GRAN (neutrophils) are 1.2-8.

I’m no medical expert, but since Dr. Virginia told me that “hemotologic improvement” would be the sign the Vidaza was working, I’m going to go ahead and assume that means it is working to get me ready for transplant (by reducing the malignant cells in my bone marrow, preparatory to the donor bone marrow wiping out the stragglers with an immune response). Dr. Virginia said the Vidaza often took 3 to 6 months to kick in, and I am in the middle of cycle 4, so that’s right on time.

As an extra benefit, the white counts put my immune system back into the normal range, at least for now. Things tend to dip a little during the middle of my Vidaza cycle, but I’m going to take the opportunity to eat salad for the next few days, and to forego wearing a face mask during non-crowded times on the Metro.I’d like to thank God, all you folks praying for me, medical science, and all the great nurses at Dr. Virginia’s. Also, I’d like to thank my DNA–you are taking the Vidaza treatment to demethylate your little double-helixed heart out, and I really appreciate it.

I heard from the nurse transplant coordinator at Hopkins that they won’t do a bone marrow biopsy on me this month and that they’re likely to do two more months of Vidaza before transplant–I’ll find out more treatment timeline info when I have an appointment there at the end of the month.

Me *not* wearing a mask on my way home from Dr. Virginia’s today. Don’t worry, I’m still avoiding coughers.

Dr. Concerned: the exact opposite of Dr. House

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My doctor at Johns Hopkins for the last seven years (including my first stem cell transplant and follow-up) has been a great person I’ll call Dr. Concerned. I’m happy to report that she is just as smart as Dr. House, but with an exactly opposite personality and, more importantly, the exact opposite way of working.

Dr. Concerned is the exact opposite of this. Image from Better Than News on Flickr.

Dr. Concerned is the exact, total opposite of this. Image from Better Than News on Flickr.

Watching House is a double pleasure: enjoying the banter and, still more, being grateful that one’s friends are not screwed-up people who devote all their free time to head games. However, I have the much greater pleasure of assuring people that generally doctors are well-meaning people and, more importantly, that they are willing to work together.

At Hopkins, a bunch of doctors all meet together to go over new patients and weigh in on treatment. This makes me feel very good, because brilliant troubled iconoclasts might make good tv, but as a patient I’d much, much rather have brilliant people working together as a team to deal with my unusual medical problem. I’m also glad, of course, that I don’t have to start bleeding out of a new part of my body three times consecutively, to create drama before each commercial, before being correctly diagnosed.

I think most doctors (other than a few egomaniacs) are willing to work together on the hard cases, although I wouldn’t be surprised if the U.S.’s crappy, often out-of-date medical records system sometimes impedes them from doing so as effectively as possible. (Fellow patients out there–*always* save your films and pathology reports!)

Dr. Concerned is clearly an even more empathetic person than average (though a little of that may just be the shape of her face, because it seemed to me she looked a little concerned even when giving me good news during routine yearly appointments). I’ll probably start seeing a different doctor at Hopkins who specializes in the kind of cancer I have now, but I’m sure going to miss her. Thanks for seven years of great care, Dr. Concerned!

Another open note for Phil

More counts today–platelets went up some more, which I hope is a sign the Vidaza is working, but my white blood cells only went up a little, when I’d hoped the extra week off Vidaza for Christmas would let them reverse their downward trend over the last few months. And my neutrophils were just the same as two weeks ago. Phil, you don’t really mean to spurn me during the holiday season, do you? Let’s start the new year off right!

However, I’m grateful for a great Christmas back home with my family. As an extra bonus, no one had a sniffle, so I only had to wear a face mask in church (Christmas Eve service = crowded service).

Two moments to cherish: iron cutwork and Jesus vs. Santa

I have always liked the metal cutwork fence to the left. I enjoyed looking at it back in 2006 when I was taking my daily walk while recovering from my first stem cell transplant, and I enjoyed it today when I took the scenic route home from the supermarket. As an extra bonus, it’s next to a big giant bush of lavender, so it smells good too on a warm day. Which this isn’t, but maybe next time I’ll poach a sprig and crush it under my nose.

Later, in a row house’s front yard, I saw the unexpected sign up at the top of this post–I guess someone wanted to remind people that Christmas is about the birth of Jesus, and they decided that the best way to do that was a big word “Jesus,” skipping any extra words such as “is the reason for the season.” There are a few small Santa decorations lurking on the side as if waiting for their chance for a putsch. However, Jesus is holding up ok, notwithstanding noticeable fading on the shiny red substrate. And the letters are actually made of shiny tinsel sprigs that would probably look better on a dimly lit tree than in the afternoon sunlight. But it’s not boring, and I give it high marks for enthusiasm.

Happy New Year, everyone!

Handwashing to the O Antiphons: Emmanuel

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Most nativity stained glass has a gratuitously blond Christ child... Get real, stained glass makers! This photo by Kencf0618 on Flickr.

Much nativity stained glass has a gratuitously blond Christ child… Get real, stained glass makers! This photo by Kencf0618 on Flickr.

Welcome to the last day of my kinda quixotic immunocompromised-Advent series on handwashing to the O Antiphons. The last O Antiphon corresponds to the first verse of “O Come O Come Emmanuel” (yes, the last shall be first!):

O come, o come, Emmanuel,
And ransom captive Israel,
That mourns in lonely exile here
Until the Son of God appear. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

But it doesn’t correspond all that closely. According to a random Catholic website I saw, the original was

O Emmanuel, king and lawgiver, desire of the nations, Savior of all people: Come and set us free, Lord our God. {Or, in Latin, O Emmanuel, Rex et legifer noster, expectratio gentium, et Salvator earum: veni ad salvandum nos, Domines, Deus noster.]

Since the hymn writer shunted “desire of nations” to another verse, he put in a whole bit about Israel and exile, which is an essential part of the Bible, but I miss the “king” part and the “savior of all people” part.

Have a blessed Christmas, everyone!

Handwashing to the O Antiphons: King of Nations

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Ok, “O Come O Come Emmanuel” doesn’t even mention today’s messianic title, “King of Nations,” in its paraphrase of the verse. That’s kind of egregious. Yeah, I’m talkin’ to you, nineteenth-century Anglican cleric and hymn writer John Mason Neale!

According to that random Catholic website I have not fact checked, the original O Antiphon is:

O Rex Gentium, et desideratus earum, lapisque angularis, qui facis utraque unum: veni, et salva hominem, quem de limo formasti.
O King of all the nations, the only joy of every human heart; O Keystone of the mighty arch of man: Come and save the creature you fashioned from the dust.

Whereas “O Come O Come Emmanuel” is:

O come, Desire of Nations, bind,
In one the hearts of [humankind];
Bid thou our sad divisions cease
And be thyself our prince of peace. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

The “desire of nations” part is actually heisted from tomorrow’s O Antiphon, and the “king” part is gone. While I love me some Biblical references to the prince of peace, I think “desire of nations” is a bit iffy to begin with. I’ve seen lots of people desire God, but most nations’, or at least national governments’, desire for God seems either entirely absent, or a thinly disguised desire for God to be on their side, which is not at all the same thing. I do want to emphasize that my enthusiasm for viewing God as King sure doesn’t mean that I think political rulers should be required to be of my religion, or to answer to it rather than to their rule-ees. I just mean that God > nations, and that, though I love my country, my primary loyalty is to God. Same reason why I don’t think national flags belong in churches.

[Yes, while I’m critiquing paraphrases, I’ll cop to doing my own paraphrase, above, of Neale’s “all mankind” to “humankind,” but that’s just updating to modern English–today “man” means “male,” i.e. I’m not invited to walk into the men’s bathroom. Also, I used brackets.]

Happy Advent!

Yay for platelets!

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So on Monday I saw Dr. Virginia, and he said it was “encouraging” that my platelets were continuing to increase (even on day 24 of my Vidaza cycle, a time when normally everything’s a little lower). Here is the chart that I had Excel make:

If you have MDS, I recommend making a spreadsheet of your blood counts to help see patterns–but also bearing in mind that there is apparently a lot of randomness in these things, so don’t assume that noise = signal (especially since decreased counts can be a side effect of Vidaza). So consult your doctor for help understanding your particular case. In my case, one of the clearest effects MDS was having on my counts was decreasing platelets–I didn’t start Vidaza until the start of October, and as you can see the platelets were dropping consistently before that. Now, they vary a bit during the Vidaza cycle, but are trending up. A hopeful though not definitive sign that this drug may be doing its job of getting me ready for transplant!

Dr. Virginia also said I could get on an airplane to go spend Christmas at my parents’ house with my sisters, so here I am. Yay!

My immune system is still super low, though (even more than before). Phil, come back–I know we can work this out…

Handwashing to the O Antiphons: Dayspring

Today’s messianic title is “Radiant Dawn.” I never did understand what “dayspring” meant, singing this verse growing up. Now, I do! And in addition to knowledge, and immunological prudence, I’m getting a sense of moving forward through Advent.

O come Thou Dayspring, come and cheer,
Our spirits by thine advent here;
Disperse the gloomy clouds of night
And death’s dark shadows put to flight. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

It’s enough to make me think I should actually get up and view the dawn sometime…

Advent blessings, everyone!

Handwashing to the O Antiphons: Key of David

Monday I started putting up the O Antiphons, in their “O Come O Come Emmanuel” version–today’s Messianic title is “Key of David”:

O come Thou Key of David, come,
And open wide our heav’nly home;
Make safe the way that leads on high
And close the path to misery. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

This random Catholic website I found gives an antiphon version that clarifies what locks the key opens:

“Key of David, O royal Power of Israel, controlling at your will the gate of heaven: Come, break down the prison walls of death for those who dwell in darkness and the shadow of death; and lead your captive people into freedom.”

Handwashing to the O Antiphons: Root of Jesse

Monday I started putting up the O Antiphons,– or, more precisely, their paraphrase in “O Come O Come Emmanuel” — for anybody who, like me, wants their immunocompromised need to wash their hands for 20 seconds to come with a side of church history. (Or, better yet, wants to promote church history to first place in the matter, and think of handwashing as a sideline.)

Today we have:

O come Thou Rod of Jesse, free
Thine own from Satan’s tyranny;
From depths of hell thy people save
And give them vict’ry ov’r the grave. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

The hymn verse today is an even looser than normal paraphrase of the original antiphon–

O Root of Jesse, standing as protector of the people; silencing rulers, inspiring the people to make supplication. Come do not delay, deliver us.

That’s according to the Benedictine site I found linked to in the Joan Chittister reflections my co-worker Rose posted on her blog. I like the original antiphon much better, but as it’s not a song I can’t reliably wash my hands to it, alas…

Handwashing to the O Antiphons: Adonai

Yesterday I started putting up the O Antiphons, which celebrate one title for Jesus per day for seven days at the end of Advent. If you’d like to read the the text of the antiphons and a lovely meditation about each day and what each title means, check out the Joan Chittister reflections my co-worker Rose posted on her blog.

I’m doing something more modest–letting you know, if you happen to be immunocompromised like me, where to start rinsing your hands if you are using today’s verse of O Come O Come Emmanuel (which is a paraphrase of the antiphons) to time washing your hands.

O come o come great Lord of might
Who to thy tribes on Sinai’s height
In ancient times once gave the law
In cloud and majesty and awe. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

Rather than just being a gimmick, I think of it as a way to build spiritual uplift into your day. Think about it–you’re going to be repeating something to yourself multiple times a day, whether it’s this or “Happy Birthday to You” or the numbers from one to 20. What do you want it to be?

If you do not care to pursue Jesusy spiritual uplift, I encourage you to adapt your own mantra.

Handwashing to the O Antiphons: Wisdom

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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!

Moment to cherish: Tasty Kabob

Because Vidaza doesn’t affect my appetite much, I am able to enjoy Tasty Kabob when the truck shows up in my neck of the woods. I was hoping the truck would show up tonight, and it did!

I’m not sure why it’s called “Kabob,” as there are no sticks involved, but it sure is tasty. And, at this point, the guy in the truck recognizes me and puts on two gloves so he won’t absent-mindedly backhand the foil with his ungloved hand before he puts my gyros into it.

Enough yumminess for dinner tonight and lunch tomorrow!

Attention, people who do not cough on their upper arms.

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Sometimes being immunocompromised means being a wee bit passive-aggressive.

Handwashing to the Oldies: Amazing Grace

Background: If you’re immunocompromised or hanging out with someone who is, you’ll be wanting to wash your hands for a full 20 seconds fairly often. You can time this by singing “Happy Birthday to You” twice, but that can get old fast…

Ok, you should probably test this one yourself, as this classic hymn can be sung to a wide variety of tempos. However, at the tempo I naturally fall into, I hit the 20-second mark after “now am found”:

Amazing grace, how sweet the sound
That saved a wretch like me!
I once was lost, but now am found,

Needless to say, I encourage you to continue to sing even as you start to rinse:
Was blind, but now I see.

Everyone can use a little Amazing Grace!

This just in: It’s harder to think when you’re tired

According to a recent study, “chemo brain” may be as much the result of fatigue and stress as of chemo. Doctors concluded this after finding out that it starts before the actual chemo, and that

Greater fatigue was correlated with poorer performance on the memory task, regardless of group.

In other words, it takes doctors repeated MRI scans to determine that tired, stressed people don’t think as well.

The obvious corollary: Maybe hospitals should look into, if you have to put people on a 24-hour IV drip, getting an IV machine that doesn’t whiffle, click, and beep next to your head all night long.

I’m just sayin’.

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.

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

Moment to cherish: lovely December weather

We had some truly gorgeous weather this last week… here’s a moment of wind and sky I really enjoyed!

Handwashing to the Oldies! First Song: “Let It Be.”

When your immune system is way below normal, as mine is as a side effect of the treatment I’m getting, handwashing is extremely important. One simple way to time things to make sure you lather for the recommended 20 seconds is to sing “Happy Birthday to You” twice.

Simple–and, after a while, incredibly, profoundly annoying.

After I started feeling like I’d got stuck in the “Small Small World” ride at Disney, only with soap instead of animatronic multicultural moppets, my boyfriend mentioned that he used another song. Bingo. Now I’m on a mission to have as large a variety of handwashing songs as possible. One favorite is “Let It Be.” I have the Aretha Franklin version in my head, but I think it’s basically the same tempo as the Beatles version that is probably in your head.

You can go with either of the two following segments:

******************************************************

When I find myself in times of trouble,
Mother Mary comes to me
Speaking words of wisdom: Let it be.
And in my hour of darkness,
She is standing right in front of me
Speaking words of wisdom: Let it be.

************** OR **********************

And when the night is cloudy
There is still a light that shines on me
Shine until the morrow: Let it be
I wake up to the sound of music
Mother Mary comes to me
Speaking words of wisdom: Let it be.

***************************************************

Actually, you can start rinsing during the last three words.

Doctors: Never Let Them See You Sweat.

I’ve put a lot of thought into trying to interact with doctors in a way that will get the most information possible. I’ve concluded that doctors have two modes: conveying information and trying to comfort you emotionally. Most doctors seem to feel antsy about the latter mode, and with good reason–I doubt they get trained for it, and even the ones who are good at it aren’t nearly as good as your friends and family, for obvious reasons.

Worse yet, once they get into comforting mode, it’s hard to get them to shift gears and actually give you all the information you’re going to want later. Getting information is tough enough as it is. Though I am smart and persistent enough to have got an Ivy League doctorate, I find I just think a lot slower when the topic is my own serious illness, plus the mistaken ideas or theories that are floating around in my head interfere with my listening. (My Ph.D. in literature helps me analyze this process later, but not, annoyingly, to avoid it at the time).

So it’s essential to a) have a list of questions, b) ask them again in a slightly different way if you didn’t understand the first answer, and above all c) avoid having medical personnel brand you as anxious. Fortunately, you don’t have to look perfectly composed or anything; it’s just preferable not to look like a bundle of nerves.

That was my mistake last week when I went to see my main oncologist (whom I’ll call Dr. Virginia because I schlep out to Virginia to see him). By and large he’s a great oncologist, but last Wednesday when I was getting my blood drawn before I saw him I made the mistake of mentioning to the phlebotomist how anxious I was about the counts (because I want to know if my Vidaza is working). So, they didn’t give me my printout of blood counts like they usually do; instead, Dr. Virginia told me verbally, and I didn’t get them all written down, and now I have to wait for them to show up on my medical-portal website to see exactly what they were.

At least I had my list of questions, and was able to get the answerable ones answered.

Have Cancer? You Are Now Officially Brave and Noble

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The first time I survived cancer I noticed that a large number of people told me I was brave. As I was actually pathologically anxious, this was a little disconcerting, as it made me feel as if people were not paying attention. (I know, being brave often means making tough choices despite fear–but all I chose was to do exactly what my doctor told me to, because I was scared of dying, so that does not count as exceptionally brave.) The best I can say for myself was that I was not afraid to ask for prayer or help, but as I have pretty much no innate sense of medical privacy and I really needed help, this too was much more survival instinct than courage.

Eventually I gave up on trying to convince anyone that I was not brave or noble. If you have cancer and do not happen to be brave and noble, I recommend not arguing with people about this. Yes, it’s annoying that people are misperceiving you, but there are way worse labels you could get stuck with. Besides, there is nothing you can do about it—if you spat in someone’s eye, they would probably interpret that as a brave and noble triumph of the human spirit over the dry mouth that comes with chemo.

Basically, when people say “you’re so brave,” here’s what they mean:

“Our society has focused so much on separating us from any familiarity with death—by worshipping youth, by walling off death behind hospital doors, by displaying dead people at funerals only in an embalmed and painted state—that I not only fear death, but also have no experience thinking about it. People in previous centuries hoped to see death coming days or weeks in advance so as to have time to compose their souls to meet their Maker, but I hope to die instantly in my sleep so that I’ll never have to think about death even for a minute. Therefore, the fact that you may be thinking about death makes me regard you as someone somehow separate from and more powerful than me.”

Or,

“Consumer society encourages me not to think about God, the sacred, or anything more transcendent than romantic love (which is the most transcendent thing that can still be used to sell a car or a bottle of soda). Death reminds me of the transcendent idea of the afterlife, so when I personally encounter someone who might encounter death, particularly at an earlier age than expected, I see that person as having a numinous aura around her, which I vaguely interpret as nobility and courage.”

Or,
“I feel empathy for your pain and want to say something encouraging, and I’m either not religious or I’m afraid that if I tell you God is with you I’ll be pushing something on you which you might disagree with. Our society believes in selves far more than it believes in God, so I will offer your self words of praise, even though they might not be remotely accurate.”

There you have it: it’s not about you. It’s just something people feel compelled to say. Ignore it and move on.

Besides, if my experience is any indication, eventually surviving cancer may make you somewhat more brave (not sure about the noble).

Second time’s a blog.

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, it turned out I have 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’m going back to Hopkins for a “mini” stem cell transplant, with the goal of donor marrow (from one of my sisters or my dad) 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. I’ve experimentally verified that 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.

Presence takes practice. But it’s so worth it.

Bruce Springsteen: “Rosalita”

[Another handwashing-to-the-oldies song fragment to help you wash your hands for the full 20 seconds. Because being immunocompromised doesn’t mean you have to sing “Happy Birthday To You” ad nauseam.]

Ok, I kind of shoehorned this song in, because I felt like including it … the chorus is around 11 seconds, so if you sing it twice that should work:

Rosalita jump a little lighter
Senorita come sit by my fire
I just want to be your love, ain’t no lie
Rosalita you’re my stone desire
[repeat]

OR, you could use this verse segment, if you are familiar enough with the song to remember it. This one is 20 seconds long, so no need to repeat:

Jack the Rabbit and Weak Knees Willie, you know they’re gonna be there
Ah, sloppy Sue and Big Bones Billie, they’ll be comin’ up for air
We’re gonna play some pool, skip some school, act real cool
Stay out all night, it’s gonna feel all right…

Tempo taken from this Youtube video, which says it’s the album version.