Hairless at home
No one signs up for chemotherapy with any kind of informed consent. Why? Info is given on a need-t0-know basis, while my 5 minutes on Google gave me the questions I needed to ask.
Sure, they tell you about losing your hair -- right on schedule, it came out in tufts. There was enough hair in my wastebasket to build a bird's nest. No one says, this process will take a week or more. You will shed. You will think you are molting. You will be surprised at what hairs remain and which ones detach with ease.
Then, you go to Wigville for the actual wig fitting. Explanations for taping wig to head prove more complicated than my brain can process. On my head, wig feels like an imposter's hair. Name for wig? Cousin It. No gender required. Cousin It's relative is "ittle," a band of hair that requires a cap over it so as not to expose the skull.
I'm told I have a lovely scalp. I'm told Cousin It looks real. Personally, I can't imagine that anyone could have any other response. Just as with new babies, all of them are cute, even the ugly ones. When you are hairless, compliments take on a different slant.
Nausea is commonly mentioned as a side effect, although the question is posed, "are you nauseous?" and proper English calls for, "are you nauseated?" P.S.: One day after chemo does not a clean couple of weeks create. You may not be nauseated the day of or during -- but there's a two-week interval to follow, when any day could be the bad day.
It is, basically, a crap shoot, how each person will react to toxic chemicals "infused" into her body. Your mileage, it seems, may vary. That covers a lot of reactions, but still, what you think when you start and what you conclude after four hours attached to a needle attached to tubing that glides the toxins into your body is unpredictable. Every day is a surprise: some are just days of slow movement; others are filled with queasy hours.
Things I researched; things no one would have otherwise mentioned: peripheral neuropathy, possible mouth sores and strange chemical tastes in mouth. Will chemo slow down the healing of the surgical scars? What foods may I and may I not consume? Do I need someone else to discern the temperature of my bathwater? How germ free do I need to make my house? Should I just shower in Purell and call it a day?
Do I need distilled water for ice cubes? How do I know good white cells from bad ones? In high school, we had to dissect a frog, twice. Why couldn't someone have taught me, say, some human anatomy? Something to do with how our bodies work? Surely we could have passed on the damn frog.
This is not the brave new world I envisioned. It is, however, very much in line with the title of poet M. Wyrebek's book: Be Properly Scared. I read the poems when they were published: the story of M's life from age 16 and her diagnosis onward. She was someone I admired -- talented, pretty, smart, funny -- and her life cut short as the bad cells multiplied and won the battle.
I guess I am lucky: the odds are in my favor. What the exact numbers are, I don't know. Another factoid hidden from the hairless. Chemo is not an adventure for those who need situations clearly delineated. Clues don't get spelled out; clues bite you on the ass, and assume you'll recognize them as answers.
But watch me when I do engage in commerce with clerks who are idiots: I have no time for them, not that I ever did have much patience. What I have now is an answer for, could you wait a few minutes? Not today, not this week. The toxins running through my veins have me in their grip. I am in thrall to what will one day be considered as suitable to cure cancer as mercury once was to cure syphilis.
I pull off my cotton cap, show my scalp, and say, "No. Don't have the time. And unless you have cancer, you won't, don't, can't understand me, so lay off the platitudes." It may seem cruel, but if there is one time in my life when it truly is all about me, this is it. Everyone I know who has been on this cruel dance floor has traced the same choreography.
Lymphoma focuses what is left of the mind in a position sharper than its ever been before. The rest of the brain cells are off on a sojourn somewhere I can't find them. I have to cling to the ones that remain.
Sure, they tell you about losing your hair -- right on schedule, it came out in tufts. There was enough hair in my wastebasket to build a bird's nest. No one says, this process will take a week or more. You will shed. You will think you are molting. You will be surprised at what hairs remain and which ones detach with ease.
Then, you go to Wigville for the actual wig fitting. Explanations for taping wig to head prove more complicated than my brain can process. On my head, wig feels like an imposter's hair. Name for wig? Cousin It. No gender required. Cousin It's relative is "ittle," a band of hair that requires a cap over it so as not to expose the skull.
I'm told I have a lovely scalp. I'm told Cousin It looks real. Personally, I can't imagine that anyone could have any other response. Just as with new babies, all of them are cute, even the ugly ones. When you are hairless, compliments take on a different slant.
Nausea is commonly mentioned as a side effect, although the question is posed, "are you nauseous?" and proper English calls for, "are you nauseated?" P.S.: One day after chemo does not a clean couple of weeks create. You may not be nauseated the day of or during -- but there's a two-week interval to follow, when any day could be the bad day.
It is, basically, a crap shoot, how each person will react to toxic chemicals "infused" into her body. Your mileage, it seems, may vary. That covers a lot of reactions, but still, what you think when you start and what you conclude after four hours attached to a needle attached to tubing that glides the toxins into your body is unpredictable. Every day is a surprise: some are just days of slow movement; others are filled with queasy hours.
Things I researched; things no one would have otherwise mentioned: peripheral neuropathy, possible mouth sores and strange chemical tastes in mouth. Will chemo slow down the healing of the surgical scars? What foods may I and may I not consume? Do I need someone else to discern the temperature of my bathwater? How germ free do I need to make my house? Should I just shower in Purell and call it a day?
Do I need distilled water for ice cubes? How do I know good white cells from bad ones? In high school, we had to dissect a frog, twice. Why couldn't someone have taught me, say, some human anatomy? Something to do with how our bodies work? Surely we could have passed on the damn frog.
This is not the brave new world I envisioned. It is, however, very much in line with the title of poet M. Wyrebek's book: Be Properly Scared. I read the poems when they were published: the story of M's life from age 16 and her diagnosis onward. She was someone I admired -- talented, pretty, smart, funny -- and her life cut short as the bad cells multiplied and won the battle.
I guess I am lucky: the odds are in my favor. What the exact numbers are, I don't know. Another factoid hidden from the hairless. Chemo is not an adventure for those who need situations clearly delineated. Clues don't get spelled out; clues bite you on the ass, and assume you'll recognize them as answers.
But watch me when I do engage in commerce with clerks who are idiots: I have no time for them, not that I ever did have much patience. What I have now is an answer for, could you wait a few minutes? Not today, not this week. The toxins running through my veins have me in their grip. I am in thrall to what will one day be considered as suitable to cure cancer as mercury once was to cure syphilis.
I pull off my cotton cap, show my scalp, and say, "No. Don't have the time. And unless you have cancer, you won't, don't, can't understand me, so lay off the platitudes." It may seem cruel, but if there is one time in my life when it truly is all about me, this is it. Everyone I know who has been on this cruel dance floor has traced the same choreography.
Lymphoma focuses what is left of the mind in a position sharper than its ever been before. The rest of the brain cells are off on a sojourn somewhere I can't find them. I have to cling to the ones that remain.
Labels: be properly scared, brave new world, chemo time, lymphoma, the hair
posted by alice, uptown at 1:39 PM
2 Comments:
A company our company does business with has recently trained their customer service reps to answer calls with, "how can I help you have your best day?" To which, I want to counter with, "I don't know, how can you? Do you have any suggestions?"
There is a very, very popular sold by beauty supply houses who cater to Black women (could be in other supply houses, but I don't frequent those) . . . lace front wigs. The wigs are glued to the cap and the cap glued to your head around the hair-line (or something like that). The idea being, to have a natural looking hairline.
Fetching. Not.
Wow you should do a book. Your writing is really wonderful. have always thought so.
I really enjoy your blog.
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