IV blouse

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.

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 sleve, 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!

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 Betsyinactionpattern to your body).

2. Cut a small neckhole (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.

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.blouse diagram

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

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.

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.

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.

wrap corners of each sleeve opposite ways around arm and tie at forearm.
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.

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

Why I haven’t blogged in a long time

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 yhohou 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 hotte.r 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).

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

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.

All blog content copyright © 2013 E. Palmberg. Guaranteed 100% brave and freaking noble.

 

 

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 © 2013 E. Palmberg. Guaranteed 100% brave and freaking noble.

HECK yes, *you* need health insurance

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 emergecies*, 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.

All blog content copyright © 2013 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.)
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.