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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.

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

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

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

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

lots of jersey delivered to hospital room!

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

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

Here are your steps:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

The Fire This Time

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

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

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

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

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

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

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

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

Top of the roller coaster

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

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

Mailing Blood to Baltimore

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

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

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

A box of blood! Garlic to deter vampires optional.

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

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

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

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

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

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

Culinary Epiphany

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

Handwashing to the O Antiphons: Emmanuel

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

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

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

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

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

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

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

Have a blessed Christmas, everyone!

Handwashing to the O Antiphons: Key of David

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

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

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

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

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.

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.