Monthly Archives: December 2012

Another open note for Phil

More counts today–platelets went up some more, which I hope is a sign the Vidaza is working, but my white blood cells only went up a little, when I’d hoped the extra week off Vidaza for Christmas would let them reverse their downward trend over the last few months. And my neutrophils were just the same as two weeks ago. Phil, you don’t really mean to spurn me during the holiday season, do you? Let’s start the new year off right!

However, I’m grateful for a great Christmas back home with my family. As an extra bonus, no one had a sniffle, so I only had to wear a face mask in church (Christmas Eve service = crowded service).

Two moments to cherish: iron cutwork and Jesus vs. Santa

I have always liked the metal cutwork fence to the left. I enjoyed looking at it back in 2006 when I was taking my daily walk while recovering from my first stem cell transplant, and I enjoyed it today when I took the scenic route home from the supermarket. As an extra bonus, it’s next to a big giant bush of lavender, so it smells good too on a warm day. Which this isn’t, but maybe next time I’ll poach a sprig and crush it under my nose.

Later, in a row house’s front yard, I saw the unexpected sign up at the top of this post–I guess someone wanted to remind people that Christmas is about the birth of Jesus, and they decided that the best way to do that was a big word “Jesus,” skipping any extra words such as “is the reason for the season.” There are a few small Santa decorations lurking on the side as if waiting for their chance for a putsch. However, Jesus is holding up ok, notwithstanding noticeable fading on the shiny red substrate. And the letters are actually made of shiny tinsel sprigs that would probably look better on a dimly lit tree than in the afternoon sunlight. But it’s not boring, and I give it high marks for enthusiasm.

Happy New Year, everyone!

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: King of Nations

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Ok, “O Come O Come Emmanuel” doesn’t even mention today’s messianic title, “King of Nations,” in its paraphrase of the verse. That’s kind of egregious. Yeah, I’m talkin’ to you, nineteenth-century Anglican cleric and hymn writer John Mason Neale!

According to that random Catholic website I have not fact checked, the original O Antiphon is:

O Rex Gentium, et desideratus earum, lapisque angularis, qui facis utraque unum: veni, et salva hominem, quem de limo formasti.
O King of all the nations, the only joy of every human heart; O Keystone of the mighty arch of man: Come and save the creature you fashioned from the dust.

Whereas “O Come O Come Emmanuel” is:

O come, Desire of Nations, bind,
In one the hearts of [humankind];
Bid thou our sad divisions cease
And be thyself our prince of peace. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

The “desire of nations” part is actually heisted from tomorrow’s O Antiphon, and the “king” part is gone. While I love me some Biblical references to the prince of peace, I think “desire of nations” is a bit iffy to begin with. I’ve seen lots of people desire God, but most nations’, or at least national governments’, desire for God seems either entirely absent, or a thinly disguised desire for God to be on their side, which is not at all the same thing. I do want to emphasize that my enthusiasm for viewing God as King sure doesn’t mean that I think political rulers should be required to be of my religion, or to answer to it rather than to their rule-ees. I just mean that God > nations, and that, though I love my country, my primary loyalty is to God. Same reason why I don’t think national flags belong in churches.

[Yes, while I’m critiquing paraphrases, I’ll cop to doing my own paraphrase, above, of Neale’s “all mankind” to “humankind,” but that’s just updating to modern English–today “man” means “male,” i.e. I’m not invited to walk into the men’s bathroom. Also, I used brackets.]

Happy Advent!

Yay for platelets!

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So on Monday I saw Dr. Virginia, and he said it was “encouraging” that my platelets were continuing to increase (even on day 24 of my Vidaza cycle, a time when normally everything’s a little lower). Here is the chart that I had Excel make:

If you have MDS, I recommend making a spreadsheet of your blood counts to help see patterns–but also bearing in mind that there is apparently a lot of randomness in these things, so don’t assume that noise = signal (especially since decreased counts can be a side effect of Vidaza). So consult your doctor for help understanding your particular case. In my case, one of the clearest effects MDS was having on my counts was decreasing platelets–I didn’t start Vidaza until the start of October, and as you can see the platelets were dropping consistently before that. Now, they vary a bit during the Vidaza cycle, but are trending up. A hopeful though not definitive sign that this drug may be doing its job of getting me ready for transplant!

Dr. Virginia also said I could get on an airplane to go spend Christmas at my parents’ house with my sisters, so here I am. Yay!

My immune system is still super low, though (even more than before). Phil, come back–I know we can work this out…

Handwashing to the O Antiphons: Dayspring

Today’s messianic title is “Radiant Dawn.” I never did understand what “dayspring” meant, singing this verse growing up. Now, I do! And in addition to knowledge, and immunological prudence, I’m getting a sense of moving forward through Advent.

O come Thou Dayspring, come and cheer,
Our spirits by thine advent here;
Disperse the gloomy clouds of night
And death’s dark shadows put to flight. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

It’s enough to make me think I should actually get up and view the dawn sometime…

Advent blessings, 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.”

Handwashing to the O Antiphons: Root of Jesse

Monday I started putting up the O Antiphons,– or, more precisely, their paraphrase in “O Come O Come Emmanuel” — for anybody who, like me, wants their immunocompromised need to wash their hands for 20 seconds to come with a side of church history. (Or, better yet, wants to promote church history to first place in the matter, and think of handwashing as a sideline.)

Today we have:

O come Thou Rod of Jesse, free
Thine own from Satan’s tyranny;
From depths of hell thy people save
And give them vict’ry ov’r the grave. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

The hymn verse today is an even looser than normal paraphrase of the original antiphon–

O Root of Jesse, standing as protector of the people; silencing rulers, inspiring the people to make supplication. Come do not delay, deliver us.

That’s according to the Benedictine site I found linked to in the Joan Chittister reflections my co-worker Rose posted on her blog. I like the original antiphon much better, but as it’s not a song I can’t reliably wash my hands to it, alas…

Handwashing to the O Antiphons: Adonai

Yesterday I started putting up the O Antiphons, which celebrate one title for Jesus per day for seven days at the end of Advent. If you’d like to read the the text of the antiphons and a lovely meditation about each day and what each title means, check out the Joan Chittister reflections my co-worker Rose posted on her blog.

I’m doing something more modest–letting you know, if you happen to be immunocompromised like me, where to start rinsing your hands if you are using today’s verse of O Come O Come Emmanuel (which is a paraphrase of the antiphons) to time washing your hands.

O come o come great Lord of might
Who to thy tribes on Sinai’s height
In ancient times once gave the law
In cloud and majesty and awe. [Protestants rinse]
Rejoice! Rejoice! [plainsong users rinse]
Emmanuel shall come to thee, O Israel.

Rather than just being a gimmick, I think of it as a way to build spiritual uplift into your day. Think about it–you’re going to be repeating something to yourself multiple times a day, whether it’s this or “Happy Birthday to You” or the numbers from one to 20. What do you want it to be?

If you do not care to pursue Jesusy spiritual uplift, I encourage you to adapt your own mantra.

Handwashing to the O Antiphons: Wisdom

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Today is the first day of the “O Antiphons,” which, during the last seven days of Advent, are traditionally said or sung before the Magnificat in vespers (evening prayer). Growing up Protestant, I learned them in the form of the great Christmas hymn “O Come O Come Emmanuel,” which is a paraphrase.

So, because Advent is for the immunocompromised too, I’ll be posting the verses relevant to each day, along with a note of where the 20-second mark is (for those of us who need to wash our hands for 20 seconds each and every time, and are sick of singing “Happy Birthday”).

However, the 20-second mark varies a bit based not only on how fast you sing it, but whether you are using, as I usually have, the tune’s Protestant version, which has a longer note at the end of each line (i.e. at “high,” “mightily,” “show,” and “go” in this verse). Catholics, I’ve noticed, tend to use what I presume is the original full-strength plainsong where you just plain sing every single note the exact same length, except maybe the very end of the chorus.

O come thou Wisdom from on high
Who orderest all things mightily
To us the path of knowledge show
And teach us in her ways to go. [Protestants rinse]
Rejoice! Rejoice! [Catholics rinse]
Emmanuel shall come to thee, O Israel.

Whichever side of the Tiber you’re on, happy last week of Advent!

Moment to cherish: Tasty Kabob

Because Vidaza doesn’t affect my appetite much, I am able to enjoy Tasty Kabob when the truck shows up in my neck of the woods. I was hoping the truck would show up tonight, and it did!

I’m not sure why it’s called “Kabob,” as there are no sticks involved, but it sure is tasty. And, at this point, the guy in the truck recognizes me and puts on two gloves so he won’t absent-mindedly backhand the foil with his ungloved hand before he puts my gyros into it.

Enough yumminess for dinner tonight and lunch tomorrow!

Attention, people who do not cough on their upper arms.

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Sometimes being immunocompromised means being a wee bit passive-aggressive.

Handwashing to the Oldies: Amazing Grace

Background: If you’re immunocompromised or hanging out with someone who is, you’ll be wanting to wash your hands for a full 20 seconds fairly often. You can time this by singing “Happy Birthday to You” twice, but that can get old fast…

Ok, you should probably test this one yourself, as this classic hymn can be sung to a wide variety of tempos. However, at the tempo I naturally fall into, I hit the 20-second mark after “now am found”:

Amazing grace, how sweet the sound
That saved a wretch like me!
I once was lost, but now am found,

Needless to say, I encourage you to continue to sing even as you start to rinse:
Was blind, but now I see.

Everyone can use a little Amazing Grace!

This just in: It’s harder to think when you’re tired

According to a recent study, “chemo brain” may be as much the result of fatigue and stress as of chemo. Doctors concluded this after finding out that it starts before the actual chemo, and that

Greater fatigue was correlated with poorer performance on the memory task, regardless of group.

In other words, it takes doctors repeated MRI scans to determine that tired, stressed people don’t think as well.

The obvious corollary: Maybe hospitals should look into, if you have to put people on a 24-hour IV drip, getting an IV machine that doesn’t whiffle, click, and beep next to your head all night long.

I’m just sayin’.

Phil, Why So Distant?

[The kind of white blood cells that are the body’s first line of defense against infection are called neutrophils. I call them Phil, for short.]

Dear Phil,

You know, we’ve been through a lot together. For four decades, you’ve really looked out for me. When I first had cancer in 2005, and the chemo was getting to you, the nice doctors perked you right back up with Neulasta, and you even came back nice and fast after my autologous stem cell transplant. I’ve really appreciated it.

But now things have changed. I don’t know whether it’s the MDS or the side effects of the Vidaza, maybe both, but you’ve been getting more distant–real distant. It’s happened silently, so much so I almost wouldn’t have noticed you’re not there, but the doctor says I have to wear a mask on the Metro, and not eat raw food except fruit I can wash really thoroughly, and take my temperature a couple times a day.

Friends kid that I should just get a single sequined glove to go with the surgical mask, but I have to face the truth: without you, Phil, I don’t get around much anymore.

Sincerely,

Cherisheach

Moment to cherish: lovely December weather

We had some truly gorgeous weather this last week… here’s a moment of wind and sky I really enjoyed!

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.

Monthly Archives: December 2012

Another open note for Phil

Two moments to cherish: iron cutwork and Jesus vs. Santa

Handwashing to the O Antiphons: Emmanuel

Handwashing to the O Antiphons: King of Nations

Yay for platelets!

Handwashing to the O Antiphons: Dayspring

Handwashing to the O Antiphons: Key of David

Handwashing to the O Antiphons: Root of Jesse

Handwashing to the O Antiphons: Adonai

Handwashing to the O Antiphons: Wisdom

Moment to cherish: Tasty Kabob

Attention, people who do not cough on their upper arms.

Handwashing to the Oldies: Amazing Grace

This just in: It’s harder to think when you’re tired

Phil, Why So Distant?

Moment to cherish: lovely December weather