Monthly Archives: November 2012

Handwashing to the Oldies! First Song: “Let It Be.”

When your immune system is way below normal, as mine is as a side effect of the treatment I’m getting, handwashing is extremely important. One simple way to time things to make sure you lather for the recommended 20 seconds is to sing “Happy Birthday to You” twice.

Simple–and, after a while, incredibly, profoundly annoying.

After I started feeling like I’d got stuck in the “Small Small World” ride at Disney, only with soap instead of animatronic multicultural moppets, my boyfriend mentioned that he used another song. Bingo. Now I’m on a mission to have as large a variety of handwashing songs as possible. One favorite is “Let It Be.” I have the Aretha Franklin version in my head, but I think it’s basically the same tempo as the Beatles version that is probably in your head.

You can go with either of the two following segments:

******************************************************

When I find myself in times of trouble,
Mother Mary comes to me
Speaking words of wisdom: Let it be.
And in my hour of darkness,
She is standing right in front of me
Speaking words of wisdom: Let it be.

************** OR **********************

And when the night is cloudy
There is still a light that shines on me
Shine until the morrow: Let it be
I wake up to the sound of music
Mother Mary comes to me
Speaking words of wisdom: Let it be.

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Actually, you can start rinsing during the last three words.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Doctors: Never Let Them See You Sweat.

I’ve put a lot of thought into trying to interact with doctors in a way that will get the most information possible. I’ve concluded that doctors have two modes: conveying information and trying to comfort you emotionally. Most doctors seem to feel antsy about the latter mode, and with good reason–I doubt they get trained for it, and even the ones who are good at it aren’t nearly as good as your friends and family, for obvious reasons.

Worse yet, once they get into comforting mode, it’s hard to get them to shift gears and actually give you all the information you’re going to want later. Getting information is tough enough as it is. Though I am smart and persistent enough to have got an Ivy League doctorate, I find I just think a lot slower when the topic is my own serious illness, plus the mistaken ideas or theories that are floating around in my head interfere with my listening. (My Ph.D. in literature helps me analyze this process later, but not, annoyingly, to avoid it at the time).

So it’s essential to a) have a list of questions, b) ask them again in a slightly different way if you didn’t understand the first answer, and above all c) avoid having medical personnel brand you as anxious. Fortunately, you don’t have to look perfectly composed or anything; it’s just preferable not to look like a bundle of nerves.

That was my mistake last week when I went to see my main oncologist (whom I’ll call Dr. Virginia because I schlep out to Virginia to see him). By and large he’s a great oncologist, but last Wednesday when I was getting my blood drawn before I saw him I made the mistake of mentioning to the phlebotomist how anxious I was about the counts (because I want to know if my Vidaza is working). So, they didn’t give me my printout of blood counts like they usually do; instead, Dr. Virginia told me verbally, and I didn’t get them all written down, and now I have to wait for them to show up on my medical-portal website to see exactly what they were.

At least I had my list of questions, and was able to get the answerable ones answered.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Have Cancer? You Are Now Officially Brave and Noble

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The first time I survived cancer I noticed that a large number of people told me I was brave. As I was actually pathologically anxious, this was a little disconcerting, as it made me feel as if people were not paying attention. (I know, being brave often means making tough choices despite fear–but all I chose was to do exactly what my doctor told me to, because I was scared of dying, so that does not count as exceptionally brave.) The best I can say for myself was that I was not afraid to ask for prayer or help, but as I have pretty much no innate sense of medical privacy and I really needed help, this too was much more survival instinct than courage.

Eventually I gave up on trying to convince anyone that I was not brave or noble. If you have cancer and do not happen to be brave and noble, I recommend not arguing with people about this. Yes, it’s annoying that people are misperceiving you, but there are way worse labels you could get stuck with. Besides, there is nothing you can do about it—if you spat in someone’s eye, they would probably interpret that as a brave and noble triumph of the human spirit over the dry mouth that comes with chemo.

Basically, when people say “you’re so brave,” here’s what they mean:

“Our society has focused so much on separating us from any familiarity with death—by worshipping youth, by walling off death behind hospital doors, by displaying dead people at funerals only in an embalmed and painted state—that I not only fear death, but also have no experience thinking about it. People in previous centuries hoped to see death coming days or weeks in advance so as to have time to compose their souls to meet their Maker, but I hope to die instantly in my sleep so that I’ll never have to think about death even for a minute. Therefore, the fact that you may be thinking about death makes me regard you as someone somehow separate from and more powerful than me.”

Or,

“Consumer society encourages me not to think about God, the sacred, or anything more transcendent than romantic love (which is the most transcendent thing that can still be used to sell a car or a bottle of soda). Death reminds me of the transcendent idea of the afterlife, so when I personally encounter someone who might encounter death, particularly at an earlier age than expected, I see that person as having a numinous aura around her, which I vaguely interpret as nobility and courage.”

Or,
“I feel empathy for your pain and want to say something encouraging, and I’m either not religious or I’m afraid that if I tell you God is with you I’ll be pushing something on you which you might disagree with. Our society believes in selves far more than it believes in God, so I will offer your self words of praise, even though they might not be remotely accurate.”

There you have it: it’s not about you. It’s just something people feel compelled to say. Ignore it and move on.

Besides, if my experience is any indication, eventually surviving cancer may make you somewhat more brave (not sure about the noble).

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.