That which doesn't kill us merely postpones the inevitable.
Thursday, December 07, 2006
Updates From Cancerland
All my nose hairs have fallen out. They don't warn you about this, about the frustrating challenges of living with bald nostrils. Those hairs serve a purpose, you know, besides just something to hang decorations on. I might write a book about it.
They also didn't warn me that some of my freckles would fall off. Not the ordinary freckles, but the raised ones which are actually called seborrheic keratoses, hideous things that two of my young Iranian residents referred to as a "brown rash." They weren't cancer, or even pre-cancer, but I guess they must have been rapidly growing cells, because the chemotherapy caused them to drop right off. I have to run around vacuuming behind myself everywhere I go, because I leave a trail of fallen freckles.
Here is an unexpected novelty: I met with a new resident at oncology clinic yesterday, and he treated me like an actual human being. He asked me what I was knitting, and told me that his sister loves to knit. He told me I don't look 53, but considerately refrained from mentioning whether I look 23 or 93 (thank gods the Prednisone cleared up my zits or I would look 13). He told me the single most important thing I can do now to improve my prognosis is to stay as active as possible. We talked a bit about weight lifting while taking catabolic drugs. He asked me how much I bench pressed before I got sick; it turns out it was only 20 pounds less than he benches, and he weighs 70 pounds more than I did then. Plus he's only 16. Then he wrote me a prescription for Ambien, and the whole visit took the exact same length of time as a normal visit that's devoid of human interaction. Not one second longer.
In an effort to stay active, I've added running up and down the stairs 30 times a day to my cardioactivity regimen.
It looks like I'm probably going to have to sell my beloved house. But maybe this isn't the world's biggest tragedy. I may be able to salvage enough from the sale to build myself a tiny cottage on the lot next door to my beloved designated driver. I can be excessively happy in an exceedingly small cozy space of my own, and planning this little cottage is a dream that has begun to fuel my waning Will To Live. I'm compiling ideas from A Pattern Language and some of its spin-offs: Patterns Of Home, The Barefoot Home, the Not So Big House series, and more. The cottage will probably be one big room that's sort of like a farmhouse kitchen, with alcoves around the edges for sleeping, office, bathroom, and dining table. Lots of windows, a fireplace, decks, and maybe a storage loft. I've been spending a lot of happy hours poring over pictures, fantasizing, and sketching plans.
Next chemo session is Wednesday December 13th. This means I'll be recovered for Christmas. I've never been a big fan of Christmas, but you know there was a time last summer, after my chest x-rays came back, when my doctor told me it looked like I had advanced lung cancer. I went around for three weeks believing that I wouldn't live to see Christmas. And yet, barring the proverbial bus attack, now it looks like I probably will! And next year, I tell myself, maybe I'll be well enough to attend a sing-along Messiah. I sing baritone, loudly and only a little bit off-key, and I know all the parts by heart which is a good thing because I can't read a single damn note of music. For the trumpet shall sound, and the dead shall be raised incorruptible!
Today I weigh 105 pounds, one pound heavier than when I started chemotherapy in October. So I'm not totally wasting away. Go me!
In addition to yays for all the positives you are seeing today, let me add that it is too cute that you crook your pinky when you take your own photo. :)
I am especially enamoured of the philosophy behind the Not-So-Big House. Have you looked into the Katrina Cottages? Also, have you read the works of Anne LaBastille? She's a biologist, teacher, and author, who built her own log cabin deep in the Adirondack forest.
I will mourn that big beautiful purple monster of a house, but I can't wait to see what you come up with next. I'm sure you and the dogs will be very pleased to have good insulation. Do you get to take your ghosts with you?
And through it all, you smile. I'm guessing you're selling the house for financial reasons and not downsizing in general. However, the idea of living in a small cottage is quite appealing.
You should tell the humane resident what an impact his good bedside manner had on you. You should print out that post and stick it to the nosehairs of the next doctor that treats you like a vessel of disease instead of a human being. I'm married to a doctor, and I still hate doctors.
So can you smell more without the nose hairs or are you just sucking up more crud?
Well, you know, I don't want to spoil the plot of this dripping medical thriller on the trials and tribs of the naked nasal passage I may write some day. But I will tell you this: really big stuff goes up there that shouldn't. Dust mites on steroids, dust motes with their own zip codes, missing socks, whatever. Almost everything that wanders up there AMA feels exactly like the cross between a pitt bull and a sea urchin, grabbing hold and irritating the hell out of my naked nose linings, making me sneeze and weep. Plus it gets really COLD and dry inside those poor bareass nostrils. I guess the nose hairs were keeping mighty gusts of the north wind from blowing straight up there.
Anyway, keep an eye on the best seller lists for more tmi nose details. Agents are banging down my door as we speak.
Hahaha, really unfortunate typo: I meant to say "gripping medical thriller" up there where I said "dripping medical thriller." Ooops. Hindsight spoiler alert. Sorry. I blame chemobrain!
I can't imagine what the title of your thriller might be. Oh, the possibilities.
Maybe you can open an Etsy shop that sells knitted nose cozies for chemo patients. They'd have to be made of synthetic fibers, of course, for sterility and allergen control, but I see a market. You could get into kamihama or macrame for the tie-on strings, just so it wouldn't be all knitting all the time. They could be beaded and colorful, or silly animal snouts, and you could even line them with filter paper so people wouldn't breathe in fiber clots.
On the other hand, you do have that thriller to write.
I'm so happy to find you. I've been checking the Wake blog but not looking at the comments until this morning! Yea! YOU! I've missed your wonderful humor and wondered how you were doing. Thank you for sharing your life with us!
Not to sound like some spam ad, but: check out Ross Chapin's website (www.rosschapin.com) for some amazingly awesome small house/cabin plans and ideas. He's featured in the Not So Big house books, and his stuff is swell. And pretty. :)
Getting my nose hairs back was my biggest post-chemo thrill. I told EVERYONE. Most of them humored me, too!
Without them, I found that I could suddenly have snot on my face without even a second's warning to grab a tissue. And stuff crusted up something fierce in there, and I had permanent nosebleeds... aw, see, I STILL haven't gotten over having them back.
Second biggest thrill: new eyebrows.
Check out "The Tiny Book of Tiny Houses," by Lester Walker. Also, a cool article about a 308-square-foot cottage designed by an architect as a low-price alternative for Katrina survivors: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/03/04/HOG86HFNDU1.DTL
Check this out. http://www.cusatocottages.com/index_content.html
It will be available at Lowe's and I am *sure* it will be available in Opelousas.
Its sad to read that you are thinking of selling the house, but all the stuff about how cold it is, well, a small house with *insulation* sounds like a fine idea.
i am so late to the party! i usually lurk, silently wishing you good and being in awe of your wonderfulness. glad the chemo timing will not make "the holidays" super-sucky, and hope you find chances to sing. glad you are alive -- and with the wit and guts to write about nose hair and all the rest.
the saga of your house and plans of building a little cottage reminded me so much of an old friend, who pretty much did the same thing. ok, it was a little different -- she left a drafty huge ancient house for a much smaller place she designed, and her cottage was on top of a barn. but it was terrific, compact, mostly open space [and storage in the rafters], and perfectly her.
Major dumb question: do houses there have heating? Central heating as in, blowing out of ducts that lead to each room? I see there is a fireplace in your beautiful bedroom.
Not a dumb question at all. Newer houses here have central heat and air conditioning. But this is an older house, built around 1900, and central heat was never installed. Neither was insulation, and it's horribly drafty. Fortunately, we only have a few very cold spells every winter, like the one last week where it went down i the low 20. Yesterday the high was 79, thank Dog, and it's supposed to be warm and balmy all week.
But hello! It's 3:30 a.m. here. What the hell am I doing up at 3:30? Sleep eludes.
I used to get really bent over not being able to sleep. I finally realized that the problem was not being able to sleep *when I thought I was supposed to sleep.* I immediately saw this problem as another opportunity to fuck the system, screw the rules. I now sleep when I'm tired, work when I'm not. As in 3 a.m. I eat the same way. There's no one to please but me. I do most of my 'business', work, medical etc, by e-mail. Sometimes I do have to set aside daylight time for business or medical, but I've pretty much got my boss trained.
Really surprised me to hear you say it was so cold there. I'm glad it's back to normal.
I'm knitting along with you. Difference is, mine will be for warmth not fashion. Here, they are pleading for mitts, scarves, hats and sock donations at the homeless shelters. They even have free yarn for us, if we want it, so long as it comes back nifty.
A single woman in my fifties, in debt, no income, no health insurance, and then that grapefruit-sized tumor wedged between my lungs turns out to be a malignant high-grade highly aggressive stage IV lymphoma. How much worse can it get? Bwahahaha! Stay tuned and find out.
19 Comments:
In addition to yays for all the positives you are seeing today, let me add that it is too cute that you crook your pinky when you take your own photo. :)
You look happy, you sound happy. I smiled all through the entry. :)
And your house idea sounds wonderful!
I am especially enamoured of the philosophy behind the Not-So-Big House. Have you looked into the Katrina Cottages? Also, have you read the works of Anne LaBastille? She's a biologist, teacher, and author, who built her own log cabin deep in the Adirondack forest.
Lots of positive energy is sent your way.
Rose
The cottage sounds wonderful.
I will mourn that big beautiful purple monster of a house, but I can't wait to see what you come up with next. I'm sure you and the dogs will be very pleased to have good insulation. Do you get to take your ghosts with you?
And through it all, you smile. I'm guessing you're selling the house for financial reasons and not downsizing in general. However, the idea of living in a small cottage is quite appealing.
You should tell the humane resident what an impact his good bedside manner had on you. You should print out that post and stick it to the nosehairs of the next doctor that treats you like a vessel of disease instead of a human being. I'm married to a doctor, and I still hate doctors.
Mmmm, a cozy cottage big enough for you, the dogs, and all your colors -- it does sound lovely, and warm.
So can you smell more without the nose hairs or are you just sucking up more crud?
So can you smell more without the nose hairs or are you just sucking up more crud?
Well, you know, I don't want to spoil the plot of this dripping medical thriller on the trials and tribs of the naked nasal passage I may write some day. But I will tell you this: really big stuff goes up there that shouldn't. Dust mites on steroids, dust motes with their own zip codes, missing socks, whatever. Almost everything that wanders up there AMA feels exactly like the cross between a pitt bull and a sea urchin, grabbing hold and irritating the hell out of my naked nose linings, making me sneeze and weep. Plus it gets really COLD and dry inside those poor bareass nostrils. I guess the nose hairs were keeping mighty gusts of the north wind from blowing straight up there.
Anyway, keep an eye on the best seller lists for more tmi nose details. Agents are banging down my door as we speak.
Hahaha, really unfortunate typo: I meant to say "gripping medical thriller" up there where I said "dripping medical thriller." Ooops. Hindsight spoiler alert. Sorry. I blame chemobrain!
Ha ha ha ha ha -- that is a good typo!
I can't imagine what the title of your thriller might be. Oh, the possibilities.
Maybe you can open an Etsy shop that sells knitted nose cozies for chemo patients. They'd have to be made of synthetic fibers, of course, for sterility and allergen control, but I see a market. You could get into kamihama or macrame for the tie-on strings, just so it wouldn't be all knitting all the time. They could be beaded and colorful, or silly animal snouts, and you could even line them with filter paper so people wouldn't breathe in fiber clots.
On the other hand, you do have that thriller to write.
I'm so happy to find you. I've been checking the Wake blog but not looking at the comments until this morning! Yea! YOU! I've missed your wonderful humor and wondered how you were doing. Thank you for sharing your life with us!
Not to sound like some spam ad, but: check out Ross Chapin's website (www.rosschapin.com) for some amazingly awesome small house/cabin plans and ideas. He's featured in the Not So Big house books, and his stuff is swell. And pretty. :)
Getting my nose hairs back was my biggest post-chemo thrill. I told EVERYONE. Most of them humored me, too!
Without them, I found that I could suddenly have snot on my face without even a second's warning to grab a tissue. And stuff crusted up something fierce in there, and I had permanent nosebleeds... aw, see, I STILL haven't gotten over having them back.
Second biggest thrill: new eyebrows.
Check out "The Tiny Book of Tiny Houses," by Lester Walker. Also, a cool article about a 308-square-foot cottage designed by an architect as a low-price alternative for Katrina survivors: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/03/04/HOG86HFNDU1.DTL
I could suddenly have snot on my face without even a second's warning to grab a tissue
Yup. Just one of the many reasons I lack a social life lately.
Check this out.
http://www.cusatocottages.com/index_content.html
It will be available at Lowe's and I am *sure* it will be available in Opelousas.
Its sad to read that you are thinking of selling the house, but all the stuff about how cold it is, well, a small house with *insulation* sounds like a fine idea.
i am so late to the party! i usually lurk, silently wishing you good and being in awe of your wonderfulness. glad the chemo timing will not make "the holidays" super-sucky, and hope you find chances to sing. glad you are alive -- and with the wit and guts to write about nose hair and all the rest.
the saga of your house and plans of building a little cottage reminded me so much of an old friend, who pretty much did the same thing. ok, it was a little different -- she left a drafty huge ancient house for a much smaller place she designed, and her cottage was on top of a barn. but it was terrific, compact, mostly open space [and storage in the rafters], and perfectly her.
carny linked to a great story about small spaces.
Major dumb question: do houses there have heating? Central heating as in, blowing out of ducts that lead to each room? I see there is a fireplace in your beautiful bedroom.
Not a dumb question at all. Newer houses here have central heat and air conditioning. But this is an older house, built around 1900, and central heat was never installed. Neither was insulation, and it's horribly drafty. Fortunately, we only have a few very cold spells every winter, like the one last week where it went down i the low 20. Yesterday the high was 79, thank Dog, and it's supposed to be warm and balmy all week.
But hello! It's 3:30 a.m. here. What the hell am I doing up at 3:30? Sleep eludes.
I used to get really bent over not being able to sleep. I finally realized that the problem was not being able to sleep *when I thought I was supposed to sleep.* I immediately saw this problem as another opportunity to fuck the system, screw the rules. I now sleep when I'm tired, work when I'm not. As in 3 a.m. I eat the same way. There's no one to please but me. I do most of my 'business', work, medical etc, by e-mail. Sometimes I do have to set aside daylight time for business or medical, but I've pretty much got my boss trained.
Really surprised me to hear you say it was so cold there. I'm glad it's back to normal.
I'm knitting along with you. Difference is, mine will be for warmth not fashion. Here, they are pleading for mitts, scarves, hats and sock donations at the homeless shelters. They even have free yarn for us, if we want it, so long as it comes back nifty.
:)
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