Category Archives: bone marrow transplant experience

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.

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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

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

to read in chemoIf 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.)

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Paper hats for everyone!

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.hat comparison whoo hooThe 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, winning hatPapillon, 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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Compelling Explanations

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

Phil does not like being in the study.

Phil does not like being in the study.

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

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

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

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

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Prayer, Science, and Pointy Things

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

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

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

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

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

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

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

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

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

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

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

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Five Stages of Chemo Hair

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

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

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

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

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Wow.

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

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

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

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

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

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

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

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Moment for Celebration!

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

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

mmmm...Union Market.

mmmm…Union Market.

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

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

Happy weekend, everyone!

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Home at Last! Also, I’m a Vampire.

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

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

My sun-deflection gear so far...

My sun-deflection gear so far…

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

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

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

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

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Hickman Catheter Date Strip Art!

Iheartnurses

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

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

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

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

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

I’m Normal! (ish)…

Whoo hoo! As of yesterday, day 46 after my mini haplo transplant, all my blood counts are normal except for the red blood cells (which are apparently the last thing to come back). Here are my white counts (the red line is ‘phils, which they didn’t always give me a number for):

The big white count spike a few days ago was when I got a sore throat.

(The big spike a few days ago was when I got a minor sore throat). There is often a blood count dip around day 60, so I will look out for that in a couple weeks. But for now, I am psyched–even my liver enzymes are down into the normal range! I am still not allowed to go outside without a mask in the city, or floss, or be in crowds, or eat at buffets, but I am totally psyched to be making progress.

I’d just like to say that all this is way more encouraging than back right after the transplant, when the key to my daily blood-numbers printout literally told me to “panic.” what to panic about

For example, here are some images from my printout way back on day 7 after transplant, in mid-April.

Actual standard language at the bottom of each blood counts printout I've got.

Actual standard language at the bottom of each labs printout.

As they’d just intentionally suppressed my old immune system to make way for the new one, near-zero white counts were normal. It was obviously cause for caution, but I really doubt panic would have helped. They should definitely reword that…

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

My So-Called Showers

If all keeps going well, two weeks from today they’ll take out my catheter and send me home to D.C., which means that I’LL FINALLY GET TO TAKE A REAL SHOWER. Because I can’t get the Hickman catheter in my chest (more precisely, the dressing-covered place where it comes out of my chest) wet, I haven’t had a carefree, normal shower in a month and a half.

When your platelets are low, it's a lousy time to slip on the bathroom floor. I recommend machine-washable bathmats that are fluffy on one side and rubbery on the other.

When your platelets are low, it’s a lousy time to slip on the bathroom floor. I recommend machine-washable bathmats that are fluffy on one side and rubbery on the other.

Don’t get me wrong–I’m very thankful that I don’t have to get stuck with needles every time I go to the outpatient unit (which was daily, at first, though now they are giving me one or two days off between visits). And I’m really, really thankful they didn’t have to run the pre- and post-transplant chemo into my veins (which they never do because it would hurt them too much). Thank you, medical science, for my catheter!

But taping plastic wrap over my catheter site to take a shower is both insecure (the paper tape tends to come off in places after a few minutes) and a bit painful when I take it off (which is why I don’t use stronger tape). So I wind up:

1. Clipping a towel round my neck with office clips, sitting down on the shower seat with my head between my knees, and washing my scalp and face with the handheld shower thingy (getting my sister to turn on and off the water).

2. Drying my head, getting out of the shower, walking over to the mirror on the two rubber-backed bathmats I got to keep me from slipping on the floor, and taping plastic wrap over my catheter, trying to get the tape a little off from where it was the last time, and making sure most of the tape width is stuck to my skin rather than the wrap. (Taping dismembered ziplock baggie over my catheter was a complete debacle–it’s not flexible enough). Then, moving my arms round a bit to see if the tape is going to come off out of hand.

3. As quickly as possible without moving my right arm much, soaping and rinsing my upper trunk, armpits, and shoulders.

4. Getting out again, drying off, and rubbing the top side of the tape with rubbing alcohol to help release it before it bonds more to my skin. Washing my arms in the sink, carefully avoiding letting the water get on my trunk, and drying them. Gently as possible, and using more swabs, peeling off the plastic wrap.

5. Putting on a camisole (folded up double over my bosom) to keep that site dry, getting back into the shower, and using the handheld to shower the rest of my body.

There I go–in a mere 45 minutes, I am mostly as clean as I would be from a normal 15-minute shower!

But when I leave all this behind, won’t I miss it, a tiny bit? NO. No, I will not.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Mhaaaaa-ROWR! I’m a Chimera

Pearson Scott Foresman/Wikimedia/public domain (altered)

Pearson Scott Foresman/Wikimedia/public domain (altered)

Yesterday I got some great news: I am a bona fide chimera! Fortunately this means not that I’m a goat with the head of a lion or some such, but rather that I’m a mixture of original me-flavor cells (everywhere but the blood and marrow) with new-and-improved donor-flavor blood. This was exactly the goal of the transplant. The test (for which they’d taken blood a week earlier) showed I’m 100% donor in my peripheral blood (i.e., blood in general) and 94% donor in my T cells.

I briefly emailed Dr. Concerned and Dr. Virginia the news, and they said it was “fantastic” and “great” respectively. I’m especially psyched about Dr. Concerned’s response, as she’s the big fancy transplant expert.

Of course, this is just one step along the journey–it’s certain that a few of my original marrow cells, including some of the cancer, is in there someplace (especially as I just got a “mini” transplant; after the chemo I got in 2006, my body couldn’t handle the full myeloablative fry-the-heck-out-of-your-old-marrow treatment). So the goal is for my new immune system, now that it’s up and running, to go after the malignant cells.

In other news, I have a mild rash which is moving around random parts of my body (leaving some places as it shows up in others). It’s annoying and itchy, but it’s likely a very mild case of graft vs host syndrome, which it turns out is actually a positive thing–it shows that the donor cells are feisty in there. In 25 days (at day 60 after transplant) the doctors will take a bone marrow biopsy to see whether the new marrow is doing the right thing and wiping out the residual cancer cells. They will also discharge me back to DC on day 60 (although the biopsy test results will, if past experience is any indication, not come back for all eternity in subjective time, and maybe a week or so in objective time).

Oh, and today I got to stop taking one of the most annoying drugs (the one where I had to get up at 6 am and also to not eat for several three-hour swaths of my day, and it irritated my stomach). So, I’m grateful for that also. Yay!

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Did I Mention Your Results May Vary?

did I mention your results may vary

My white counts are not as such rock-star levels now that they stopped the white-count-boosting drug and started me on the suppress-your-immune-system-a-little-but-prevent-a-popular-kind-of-pneumonia antibiotic. They’re at a little over half normal levels, in fact.

But hey, my platelets are higher than they were since I was diagnosed with MDS (in fact, higher than they were several months before that). So I’m way less fragile that way! And I can hope that the platelet count indicates it’s donor marrow at work in there (since my own marrow had not exactly been shining in the platelet department). We’ll find out the results of that test Friday.

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Your Results May Vary

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.

your results may varyAlthough 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.

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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.

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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.

I do not want what I have not got

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.

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

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

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

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

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

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

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

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

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Welcome, Phil II!

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. Welcome, Phil II!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!

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

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.

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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

I am getting my bone marrow transplant right this very minute

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!

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!

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

The Fire This Time

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

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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Chemo multitasking–not so much

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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

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.

Kaiser number smallIt 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.

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.

wrong fed ex address small

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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking 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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.