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.

 

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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.)
Copyright © 2013 E. Palmberg. All blog content 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.

Copyright © 2013 E. Palmberg. All blog content 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?'”

Copyright © 2013 E. Palmberg. All blog content 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.

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

Five Stages of Chemo Hair

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

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

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

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

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

Wow.

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

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

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

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

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

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

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

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