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.



Yep, this sucks.

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.