Cancer and . . . Christmas

It is Christmas.  I don't have cancer anymore; I just deal with being mostly bald (I really don't care if people look at me cooky on the train), and occasional hot flashes (Kansas blizzards are awesome for relieving hot flashes in a hurry).  And yes, I am particularly grateful for friends and family and being here to enjoy them again this year.

This Christmas I am much more aware of people who do have cancer, and other difficult medical conditions, or are just struggling with situations out of their control.  I can't help but with a pang of empathy think of my friends from the chemo room who aren't done yet, and have to deal with so much more than hot flashes today.  In the big picture time keeps going, and we mark the days and years, through whatever life may throw at us.  We have no other choice, and sometimes we need a big holiday like Christmas to place our particular challenges into perspective, make us step back and compare this year to "normal" life.  That awareness can be joyful, or really, really painful, or even somewhere in between. 

I'm guessing most of this post is not new to you; it's the stuff you learn from growing older.  The fact that it's more of a new thought to me is a testament both to my youth and general good fortune.  I find the holidays a new kind of weighty in 2009, and this Christmas I am content and very, very blessed. 

Margaret: 2.6, Grazleda: 0

This is me, this morning. 

I am smiling very big for 3 reasons:

1) My AFP is down to 4.4.  That is to say, it continued to drop by 2.6 over the past month, without chemo.  Yay!!!

2) Yesterday I went to the dentist to get my teeth superficially cleaned.  Superficially because they didn't have time to get me in for a full cleaning, but squeezed me in, stayed late to get off the brown stain I'd developed during my no-flossing-allowed, lots of sugary drinks, and major changes to my body chemistry (i.e. chemo) time.  Yup, I think my bald head and cancer story (it's not my fault my teeth are this way!) made that one possible too.  So I am proudly displaying my pearly newly-whites.  Oh yeah, and that Crest Pro-Health mouthwash I was so fond of because it wasn't baking soda and salt water . . . apparently it increases tendency to stain.  Go figure.  And go Biotene. 

3) Today I leave to go on vacation.  Kansas here I come!!

Hanging Up My (Cancer) Hat, Literally

Today's project:
Turning this . . .

Overflowing Drawer of Headscarves

into this . . .

Beautiful Colorful Wallhanging

Not only does it solve the Way Too Many White Walls in my new house problem, it solves the What To Do With All My Beautiful Headscarves Once My Hair Grows Back problem (What a great problem to have!!).  My head still definitely qualifies as "bald," though it's starting to fill in slowly, so it's fortunate that this dynamic scarf storage system offers easy access to all headgear.  I would tell you all the ckraphty details, but this blog is about cancer, not home decorating, so you'll have to find out through some other channel.

Thanks to my friend Jodi who is visiting and was the inspiration behind this project!


Medical Update:
I feel great.  My eyebrows are filling back out to their normal, bushy selves . . .
Oh . . . I do have a little bit of real news.  My PT/INR (blood thinness) levels have been stable enough that I now only need to get checked once a month.  Meaning: I only have to get poked once a month until further notice.  Well, I do have another blood test tomorrow, an AFP count (the big one), but after that I'm on the once a month schedule.  I'll post the results when I receive them, probably on Tuesday, but I'm anticipating a nice, medically boring week and heading off to Kansas on Friday.

Grazelda's Favorite Hits - Part I

For this week's Cancer-tainment, I present to you the first in a series of Top Ten Lists. 
Top Ten Books I Read During Cancer (This is a non-ordered list.)

  Kafka on the Shore by Haruki Murakami
Well, I'm not quite done with this one yet, but once I got past the suggestively boring/heavy presence of "Kafka" in the title, it turned out to be really engaging.  One of those books where I have no idea what's going to happen next!

   Sleeping Naked is Green by Vanessa Farquharson
This book is not very engaging, the author's attempts at "going green" seem mostly laughable to me, and I haven't even read 1/3 of it, but it made a nice, light, fluffy read-aloud while I was in the ER with Grazelda.

   The Shadow of the Wind by Carols Ruiz Zafon
This book is so scary, there were times I couldn't read it before bed.  Seriously.  Good plot and well-written.  

  Everything Changes: the Inside Scoop on Living With Cancer in Your 20s and 30s by Cairol Rosenthal
Interesting.  Better than your average Inspirational Cancer Book.  Tells lots of stories of young folks who have much more dramatic experiences than me.  Trust me, this is the kind of drama I can happily live without, but some of the essence of experiences are the same.  

  Taffy of Torpedo Junction by Nell Wise Wechter
Though written for a younger crowd, this was an entertaining read, and very good for those nights on steroids when I was awake till 2am.  I did love the Outer Banks accents. 


  Twilight (and the rest of the series) by Stephenie Meyer
Just the right weight for a gal on chemo.  I have to admit to staying up later than I needed to keep reading them.  I also have to admit that there's this guy at my church who looks exactly like I envision Carlisle.  (Hey, Mark!)

  Widdershins by Charles deLint
Good characters, good plot intricate fantasy world, mixed with real world stuff.  Also sometimes a little too scary for 2am.  

  The Graveyard Book by Neil Gaiman
This one I made my Dad read aloud to me when I was in random severe pain (Thanks, Dad!).  I also read it early in the morning during hospital stay #2, and then decided it was a little too scary for 6am.  Very good, very entertaining.  Highly recommended.

  The Unlikely Disciple: A Sinner's Semester at America's Holiest University by Kevin Roose
Also highly recommended.  Entertaining subject with an honest and nuanced perspective, well written, and for a book about Liberty U, America's Holiest University, it even contains the kind of passage that made me stop the read-aloud when the pastor walked into my hospital room.  

  The Geography of Bliss: One Grump's Search for the Happiest Places in the World by Eric Weiner
Now don't take this the wrong way, because this is a fine book on the paragraph/chapter level: The Geography of Bliss made an excellent keep-in-the-bathroom book.  Due to the nature of the author's survey, the chapters read fairly well by themselves and don't require much continuity.  And with some of those nasty chemo side effects, it is important to have good Toilet Literature.  

  The Guernsey Literary and Potato Peel Pie Society by Mary Ann Shaffer and Annie Barrows
I read this book on my Intermission Week because the church book group was discussing it.  We mostly agreed that it was mediocre.  I maintain that it was worth my time reading it so I got to go to book group.  

[were you counting?  If so, just consider yourself lucky you got a bonus!]

Part II will definitely be Grazelda's Soundtrack (top 10 songs during cancer), but after that I am open to more Top Ten _______ During Cancer List suggestions. 

Medical update: I got a cold this week.  Ugh.  And I'm still getting over it, but I am getting over it.  Cough drops and orange juice.  Not being able to breathe combined with the cold(er) weather inhibits my "Getting Buff Again Without Being Stupid About It" project.  That is to say, I probably only biked 20 miles in the past three days, and went dancing twice (contra and samba), so you probably shouldn't feel too sorry for me.

Thanksgiving

Thanksgiving was beautiful this year.  The Ozarks were at their November best, the weather was gorgeous, and this Tucsonan was, again, fascinated by the proliferation of trees!!  The food, the robot-mugs, the cloth napkins, the behaviorally-challenged canines, the extremely-full car ride, the caboose in the woods by the pond, the grass - each of these could be the subject of its own blog post.  But none of them have anything to do with cancer.  That was possibly the best part - feeling so normal, being so normal, doing things that I would have done this year, and in this way, even if I hadn't woken up in pain four months ago and gone through everything that followed. 

Being together with family was extra-special, particularly Grandma, who's had health concerns of her own to combat.  Also, Grandma has chronically cold hands that felt amazing on my head when I would get a bout of my own personal summer (hot flash).  Needless to say, I was sure to sit by her often. 

My list of things I'm thankful for this year is very long.  I'm glad I don't have cancer anymore.  I'm happy I don't start another round of chemo tomorrow.  But those things (or perhaps more clearly, their opposite - having cancer, needing chemo) seem more like fate, something no one has control over.  So I'm most grateful for the people who have surrounded me and stood by me in so many ways the past few months. Because those people (i.e. you, and others) have made a choice to support me, have gone out of their way to make my life more pleasant by taking care of my physical, emotional, medical, and yes, even social needs in the middle of the yuck.  Thank you. 

Quitting Chemo - and Cancer

I got a call yesterday from my doctor's office scheduling my next appointment: January 20!  I might not go into the office for two months!  In the meantime, I'll get my blood tested and a CT scan.  I'll have some phone conversations, and can call or go in if I have questions or concerns.  And I get to talk to Shirley every week about the thickness of my blood.  I don't usually believe in more than one exclamation point per paragraph.  But I'm done with chemotherapy!!  And that is cause to celebrate with excessive punctuation!!!

Yes, I won't have the five days of yuck, and my hair will start growing back.  I can go back to work, and stop using antibacterial soap unless I just replaced a toilet or something really nasty.  But quitting chemo is not simply a happy occasion.  I worry about having made the right decision, about every little twinge, burp, or upset stomach - is that Grazelda?  Or is it Grazelda's mutant, back for the fight stronger than before?  It sounds like some terrible made-for-TV alien movie sequel. 

In the meantime, I have places to bike, people to see, books to read, music to dance to, and furnaces to start up.  "Sitting out" for a few months can give a person quite the ToDo list, and I have barely started on mine.  That is to say, I may be too busy to worry much.  

I won't say good-bye yet.  I want at least one more blood test before I'll be convinced that Grazelda has been entirely annihilated, and I will definitely be sad to lose you all as such a wonderful audience for my rambling thoughts.  But for now I'll hope for medical boring-ness and try to post weekly.  Emails are always welcome [pennermk AT gmail DOT com] if you find yourself needing a higher dose - I'll do my best to reply quickly.

Oh yeah, and for old times' sake . . .
Chemotherapy Side Effect #92: Ridged fingernails.
I feel a little bit like a tree, but instead of rings counting years, I have ridges on my nails counting chemotherapy cycles.  They'll grow out with my fingernails, but meanwhile I have a reminder, in case I forget. 

Decisions decisions . . .

It was a good news kind of doctor's visit this afternoon.  We all breathed a sigh of relief that my AFP was 7.  The reading of 22 was either a lab error or some stubborn cancer cells finally throwing in the towel, popping and releasing a bunch of that protein all at once.  My PET scan was basically clear except what is probably a little bit of over-active fat some distance away from where Grazelda lived, which will be confirmed by a CT scan at some point in the future.  And I got other little bits of good news, too: I am now officially allowed to floss, have blood drawn from my left arm, and play ultimate frisbee. 

Now what?  Well, now I get to choose whether I want one more cycle of chemo (=one 5-day week + 2 Bonus Bleo days) or that I'm done and watch my AFP count closely.  I've been thinking/talking/writing about it all afternoon and evening, and don't feel much closer to a decision.  Ugh.

So I'm experiencing a mixture of happy that bubbles up and says "Hey - I used to have cancer.  And now I don't.  Life is great!" and a slight headache from too much thinking in circles about chemo choices.

But.  I get to go to Missouri and see my family for Thanksgiving next week, and I'm working tomorrow and there will certainly be some sort of partying this weekend.

7 < 8.4 !!!!

Dr. Hallum called this morning bright and early with some very good news.  My AFP from this last blood draw was 7, which is in the "normal" range of below 8.4. 
I'll still go in later today to ask lots of questions, but I thought I'd share the news while it's fresh.

Happy Wednesday!!!

MORE Awesome!!

Here he is, friends.

I guess this picture gets the "hold you in the palm of my hands" line a little backward, but I needed some perspective.

For even more perspective, here are before and after pictures.  Just add faith (and a little bit of water). 

What sucks is that I'm posting the Grow Jesus pics on my cancer blog tonight because I have a doctor's appointment tomorrow (Wednesday).  I don't know what news it will bring - the results of my blood re-test (AFP tumor marker recount), the interpretation of my PET scan, and the implications for my treatment plan.  That is to say, I may learn that I have more sugary, more chemo, different chemo, or some other unknown. And then I might not feel like putting up Jesus pictures, no matter how awesome he is.

Meanwhile, I go biking and get those delightful endorphins and stay happy.

Socio-Political Side Effects of Cancer

I've written quite a bit about the absence of hair on my head.  I'm bald and female, and in this culture that's weird.  I stick out. 

Here's the other side.  The rest of my hair is mostly gone too - legs, arms, underarms, and all the other places I formerly had hair are basically bare.  Before chemo, I had always been very well-endowed in the body hair department, and now after I disguise my bald head with a favorite headscarf or hat, I feel like I fit in better than I did in my phenomenally hairy, not-on-chemo body.  These days, without spending hours waxing, shaving, plucking, or bleaching, my body looks more like what mainstream media tells us is feminine and beautiful and normal.  And I feel feminine and beautiful and normal. 

Do you realize what I just said?  "Beauty" is definitely not on the list of side effects I was handed during Therapy 1.1, but in the eyes of the media, the culture, and myself Chemotherapy makes me beautiful.  That sounds very very wrong to me.  Dripping poison in my veins makes me feel horrible and gross and sick and ultimately it makes me look good?  Something has got to be badly broken in a culture that holds up as attractive the appearance that arises from such misuse.  Misuse by chemotherapy, by anorexia, by cancer-causing tanning beds, by skin-damaging hair removal products, rib-crushing girdles, and joint-destroying heels . . . (Of course all of these torture devices are targeted at women.  The patriarchal political dominance through cultural opression is so obvious as to be put in parenthases.) Should we not instead value well-ness and celebrate its embodiment?  Should we not seek to live wholly in our bodies as they were made for us?  Finally it becomes a question of transforming the culture we live in while still living within it. 

P.S.  That eyelash is still holding on. 

The Late Last Lone Lash

It was a good day here, full - and I mean really quite full - of spontaneous social interaction. Sorry, Jodi, I didn't have time (or implements) to decorate my walls today, and my batteries ran out before I could capture the latest incarnation of Grow-Your-Own-Jesus in pixels to post.  So, you'll have to settle for a bizarre picture documenting the current state of my eye.  Not only are my eyebrows about 1/3 of their former glorious fullness, but my eyelashes are also significantly thinner.  In fact, on my one eye, on the bottom, there's only the one lone long eyelash left.  It's too late at night to have Profound Cancer Thoughts, and I am fascinated enough with having a solitary eyelash that I took a picture to share with the world:

Positrons and Positives

I went for my PET scan today. 

[Pause while Margaret pulls her glasses down her nose and continues in her best teacher voice]

PET stands for Positron Emission Tomography, which means they injected me with radioactive glucose so I personally was emitting positrons from wherever that glucose (well, I think it was actually a glucose analog) went, and by measuring those emissions they make lots of cross-sectional images of me to create a 3d one.  For the glucose to get only to the proper, active, high-metabolism (i.e. cancer) cells, I had to lay in a recliner very still, doing nothing, and not being anxious, so the glucose wouldn't go to the muscles that were working or the brain cells that were worrying.  In other words, forced relaxation for a good forty-five minutes, after which I had to lay on the narrow bed that slid in and out and through the PET scanner tube with my arms way up over my head for another twenty minutes, again being very still and non-anxious.  The worst part was my shoulders starting to hurt after about 5 minutes in the tube, and let me tell you - after cancer and chemo and crap, sore shoulders are like a sunny day at the beach. 

It also struck me as bizarre that my job was primarily to relax.  I guess I am told to relax all the time by medical folks, but usually it's to keep my veins from contracting, or because there's nothing else to do while on the poison drip, or to make whatever little shot or exam easier.  Here, relaxing was vital to getting a clear and accurate scan.  So today I was particularly glad I'm not squeamish around needles or at this point very emotional about my cancer. 

The idea of forcing myself to relax brings to mind another phenomenon, which is that of the required positive attitude.  First, I think that overall, I've managed what could easily pass as a "positive attitude" through most of this crud.  I certainly haven't pulled the worst cards out of the cancer deck, and I have a large, strong, and loving community of friends and family who make my life logistically, financially, and emotionally comfortable, making it often effortless to keep a smile on my face.  (Thanks, guys!) 

BUT, it's unhealthy to expect a cancer patient to be happy and optimistic all the time.  It's okay to be sad, it's important to cry, and the people closest to me give me the space to have my emotions honestly.  But not everyone is so enlightened, and to claim that sustained cheerfulness alone will heal your body can cause more repressed anxiety and frustration than allowing them their natural space and expression.  These seem like obvious truisms, and yet I often am encouraged - by hospital nurses, strangers, and even fellow chemo patients (you get all kinds in there!) - to have a "positive attitude," even to the point of making declarations that I certainly can't know to be true and have no control over. 

Like today, I was chastised for putting "probably" or "hopefully" in a sentence about a timeline for getting rid of all the cancer, as if one little adverb revealed a latent negative mindset.  Not only do I do a pretty darn good job of keeping a cheerful face on the whole matter most of the time (again, it's because I feel pretty cheerful most of the time), but I was merely taking care to speak as accurately as possible given my minimal knowledge of what my life will be like in two weeks.  The encounter was irritating to me, and would have been downright disheartening if I didn't have such an arrogantly confident conviction that I am an emotionally healthy and generally positive person.  In other words, I promptly dismissed the suggestion to speak with undiluted assurance about the future, as simply wrong.

Now it is my bedtime.  I am hoping for pictures tomorrow, aren't you?  Perhaps an update on the growing/shrinking Jesus.  Or maybe the Very Last Eyelash.  Or maybe a shot of my newly decorated walls, though that would require decorating them first, which could be time-consuming. 

Bummer #372

If one were to be so brazenly polarizing as to classify days as "good" or "bad"/rough/tough/challenging/other sugar-coated euphemisms for bad, today would easily fall on the "good" side of the fence.  I went hiking, had a picnic with friends, cooked a large meal, and was able to blame its bland-ness on my lack of tastebuds instead of my personal culinary skill. 

And yet, in the middle of the day, just before I was going to get on my bike and ride to said picnic, I called the PET scan place to ask a few questions about the test I'm having tomorrow.  The woman was helpful and kind, and then said, "And you know not to perform any strenuous activity for 24 hours before the scan, right?"  No one had informed me of this, no, and I glance at the clock, relieved that my hike was completed before the 24 hour mark, and that I still had a grand total of 3 minutes to perform as strenuously as I wanted before I needed to stop. 

Me: "So, I shouldn't do something like go on a bike ride right now?" [Maybe I should have included the word "leisurely."  Maybe that would have helped.]
Her: "No, if you're scan is tomorrow, definitely not.  You don't want to get your muscles working and then have a false positive." 
Me: "Bummer." 

It's not a huge deal, driving what would have been a perfect-length bike ride for my Getting Buff Again Without Being Stupid About It Plan, but it's just one more in a long series of little - and sometimes large - bummers resulting from this whole cancer thing.  

Tomorrow's the big PET scan day, but I won't get it interpreted until next Wednesday.  Bummer #371 is that I can't eat all morning tomorrow.  No Egg And Toast.  No granola and milk.  Not even a mint.  I will pack a big lunch for afterwards.

In the meantime . . .

In my non-cancerous existence I am employed by Community Home Repair Projects of Arizona (CHRPA for short - say it: CHIRP-uh.  Yes, it's another awkward Mennonite acronym and no, we don't have anything to do with birds).  CHRPA does home repair at no cost for people in our community who couldn't otherwise afford it including carpentry, roofing, plumbing, coolers, and (my specialties) electrical and furnaces.  I've been at it about three years now.  And yes, I do all of that and am simultaneously a woman (if you didn't pick that up from the cancer I suffer starting in one of my ovaries). That is to say, normally I'm out in the field every day, doing the home repairs and training volunteers to do the same.  However, after major abdominal surgery and subsequently diving headfirst into chemo, I stopped that.  I have not been climbing ladders, crawling under sinks or trailers, or going out in the field at all.  CHRPA work is dirty and tiring, and not in a "clean dirt" or moderately tiring sort of way. Chemo patients are not supposed to be that sort of dirty or tired. 

So, for the past couple months on my non-bad weeks on my non-chemo days when I've been feeling well,  I've been going into the office to work on writing grants and occasionally answering phones and doing other things that need doing and don't involve physical labor or really grimy places. 

Today, though, for the first time, I went in to work with my pliers holster on my belt and my purple bandanna on my head.  I went out to jobs with my boss, and we did 4 furnace startups/cooler shutdowns and installed 2 grab bars in under four hours.  He graciously did all the ladder-maneuvering and roof-top stuff, anticipating that it'll take me a while to get my full strength and endurance back.  I'm not suddenly 100% again, but it does feel good to be so tangibly useful. 

I'm also not consistent at 4 days a week yet.  For example: tomorrow's a holiday, Thursday I have medical stuff most of the day, and CHRPA doesn't work on Fridays.  I'm still waiting, expecting to go back on the poison drip in a few weeks after I finish the next round of tests and an appropriate protocol is determined, but in the meantime, I might as well fix some houses. 

At the end of the day I got sent out to help a VSer who needed some supplies from the shop.  The project was some very aggravating, poorly engineered, cheaply executed plumbing to fix (de rigeur for a CHRPA day), and we ended up working quite late, which today feels more like an accomplishment than an irritation.  After getting back to the office, Daniel the VSer set down two bottles in front of me, saying they were for me, from the client (we'd driven separately and I'd left a few minutes before him).  Closer inspection revealed them to be shampoo and conditioner. 

. . .

What??

everybody's gotta wait in line

Here's what I know:

I have a PET scan on Thursday. 
I have a blood re-test next Monday.
I have a doctor's appointment next Wednesday.

That bit I wrote last week about needing lots of patience to get through cancer is so very true.  Today was pretty rough as I found those things out in a series of phone calls.  It is not an easy thing to sit on my laurels and wait for answers to my page of questions that can be summed up in two words: "What's next?"  But that's about all I can do for now.


Also.
While the following sentence may sound like a great metaphor for something, please don't go there.  My words are quite literal:
Today I discovered I can't taste the salt in my own tears. 
Huh. 

Dia de Los Muertos

This evening was the recently traditional Tucson All Souls Procession.  It draws on the Mexican Day of the Dead, the Catholic All Saint's Day, and doesn't shy away from Halloween, but really it's the poster child for a post-modern holiday.  Let me explain what I mean by post-modern, as that word should not be thrown around lightly. 

There's a very defined ritual - everybody dresses up, usually like someone dead, or in black at the very least, often with very large puppets or instruments or drums, or carts, or portable shrines, and processes through town.  At the head of the parade is a very large paper urn into which people are invited to put a name or picture of someone who has died.  Spectators eventually fall into the parade behind/beside, and everyone collects in a big empty parking lot at the end where there is otherworldly music, arialists suspended a great distance above the ground, and fire dancers.  The effect is ultimately surreal, and the climax is lighting fire to the paper urn (and everything in it), after which it is quickly hoisted up in the air and we watch it burn. 

It's a great ritual.  Absolutely spectacular in my book, and just for comparison I'll disclose that I'm rather bored by fire works.  I am fascinated and captivated every time.  It's a great ritual, but the meaning is left open, left to those who come to participate to find/define it for themselves based on what they bring to the experience.  Some march in memory of someone, some march for a cause, some march because they like dressing up in black and painting their faces, some march because they love drumming and dancing.  There's no narration, no plot, no words spoken to the crowd until after the urn is burned.  That's why I call it post-modern.  I love it. 

This year I decided to really dress up, and after I got sick I knew I wanted to go as something related to Grazelda.  I was really hoping and mostly expecting that she'd be gone by now, and that I'd march in celebration of her death.  Sadly, she is not yet departed, so I had to adjust my costume a little.  Kristi did my hair and back, Alison the VSer did my port decor, and I put eyeliner on my tummy scar to bring it out more; Fortunately, it's healing too well to be a proper parade accessory.

I got lots of compliments on my head.  As I suspected, Dia de Los Muertos is a great place to be a bald woman.  With all the costumes and makeup and surreal personages walking about, I fit right in.  Several people came up and asked about Grazelda.  I told them the truth, so they wouldn't think I had a deathwish for some unfortunately-named woman who had wronged me. 

It was a good evening.  Pulsing with energy and celebration (in the broad sense) of death.  In that setting, strangers talk to each other, take each others' pictures, and dance together to the drumming.  It was a great place for me to be.  And I hope that Grazelda burned up for good with the big urn. 

And now it is very late and I am very tired (the I've Been Up All Day And Am Sleepy kind, not the chemo-fatigue kind), so I will go to bed. 

Damn.

I think today qualifies as really bad.  Even without cancer, it wouldn't have been a good day - I woke up with my face feeling puffy and uncomfortable and some dimwit in a pickup ran into me while I was on my bike -  but cancer definitely pushed it over the edge to really bad.

I got the call from my doctor this evening.  He explained that my number had gone up.  Yeah, that's right, it went up and it was supposed to go down. 

Let's review.  The numbers we're talking about are my Alpha Fetaprotein (AFP) count.  It's a tumor marker, a protein produced by the kind of cancerous cells that developed in my body.  Before surgery it was 6,620.  It's been going steadily downward since then, roughly in an exponential decay pattern.  Three weeks ago it was 14.6.  The goal was 8.4 or below.  In the blood draw from yesterday it was 22.  Damn cancer. 

Not only is Grazelda not gone yet, she's growing (or there's a lab error).  So what's left has probably developed a resistance to the hardcore chemo drugs I've been on.  Not only would that mean more chemo, it would mean different chemo.  I mean, this regimen sucked, but at least I'm used to it.  I know what my body does when, and I'm always up and around again after a few bad days.  New drugs would mean new side effects . . .  but all that is speculation. 

First we (and by we, I mean Dr. Hallum) have to figure out what's going on, so I'll have some imaging done next week, have my blood test re-done, and go in to talk with him on Wednesday. 

I don't know which is worse - getting diagnosed with cancer, or getting told the treatment didn't quite work.  Getting diagnosed was pretty crummy and I was very afraid of chemo, but at least it meant an explanation and an end to my immediate suffering of having an ovary the size of a football tucked in my abdomen.  Right now I feel great (well, minus the kleenex and water I'm toting around tonight), and have been thinking about and anticipating moving on with my life after today, and I now know how much chemo sucks (which is a lot).  There is no silver lining (or even just a bit of silver lint laying around).  It's just bad news. 

Well, I think it's time for a little whiskey. 

Therapy 4.7

Today was a good day.  As in, the kind of day that non-cancerous people would mark as good.  Hm, except the best parts happened in the chemo room, which isn't a place that non-cancerous people typically hang out . . . Jeanne went with me to chemo this morning.  One of my chemo friends, Martha, was there who remembered it was (possibly/probably/hopefully) my last one.  I was next to her on her first day, along with a couple of her teacher friends, and she really bonded with my mom.  Martha and one of her teacher friends brought me a goodie bag full of neat stuff, including a bag of yummy homemade cookies.  The nurses were very busy running around today, so before I got hooked up I opened the cookies and took them down the row, inviting everyone to join the party because it might be my last day and asking how they were doing.

Even better than the cookies was the chance to go around and talk to everyone and listen to them a little while.  Many of these women I'd met before - and everyone on the drip was female today, though there were some husbands around, too. One woman remembered my name, my whole story, my football-sized tumor, my "very long hike". . .   Another woman had thought my headcovering was actually my hair from far away.  Like I said a couple posts ago, someone who hadn't met before wouldn't be able to tell that I didn't naturally have neon orange hair!  So we compared bald heads and talked about the curls that might grow in.  Younger than the average patient age by 40 years or so, I get a kick out of fashioning myself a little bit like everyone's spunky granddaughter, and today I think I did it pretty well. 

It's hard to see people doing worse than they were before - Three weeks ago Helen could transfer herself from wheelchair to recliner.  Today it took two nurses.  Stupid cancer. 

Shirley wouldn't give me my certificate yet, since I might not be done, but I did catch up on my stickers-on-my-cancer-binder count of number of chemos I've gotten. Here's what 28 stickers looks like:

So if Grazelda's not dead yet, it's not for lack of capturing the magnitude of the effort visually!

The afternoon was also pleasant: after a little bit of loafing, I loaded my bike in its various parts into my car and took them to the bike coop, where, after 4 hours work, some more frustration, but more learning things and being successful at truing my very first wheel, I got my bike back together.  So now I'm a Probably-Cancer-Free Young Woman With A Functional Bike And A Full-Size Accordion (as of Monday evening!).  What more could a person ask for, really?!  Oh yeah, grease stains.  The picture doesn't show it too well, but there are even bike grease stains on my shorts. 

Tomorrow I have my blood test.  Friday I get the results.  And I guess you could say I'm a little nervous, but more it's irritation at not being able to plan next week until I know whether it's totally taken up with chemo and feeling bad ,or if I just have my first follow-up visit on Wednesday.  The test won't change anything in my body.  Everything's already been done, endured, and survived.  This test is just a measure of that which has been done (oh yeah, and I get poked again because that's what always happens).

Cancer and . . . whatwasIgoingtosayagain?

I've been meaning to write this post for a while, but it's just kept slipping my mind.  

Most people know that chemo makes you feel yucky.  Nausea, vomitting, fatigue, hair loss are all famous results of the Big Drip and things people ask me about.  Here's a lesser-known joy of cancer treatment: Chemobrain. 

Studies have shown that people undergoing chemotherapy experience mild loss of memory and concentration.  It's in the literature, it's something the oncology nurses explain when going over the Long List of Side Effects at the beginning of treatment, and it's another one of those things that just creeps up on you so gradually that you don't really notice it for a while and then can't be entirely sure that it's not just your mind under stress or being its usual clumsy self.  And by "you" and "your," I mean, of course, "me" and "mine," because this is what happened to me.

I'm pretty sure I've got chemobrain - not so much a matter of memory loss, but of reduced concentration, of talking and having to put a big pause in the middle of a sentence as my mind goes away and comes back.  Any way you slice it, it's not as big a deal for me as hair loss or fatigue or the constant chemotaste in my mouth.  Heck, I've avoided doing anything that requires too much concentration for the past three months, granting some tiny bit of [insert big pause so Margaret can think . . . hmmmm, what's that word that means truth and would sound good here? . . . veracity? . . . merit?  no . . . ah, here it is] credence to the "chemo-vacation" paradigm.  Nevertheless it's a frustrating experience and one that I don't really like to admit to, except of course on a blog read every day by people across the globe. 

I think I cover for it pretty well by pretending to be thinking hard or speaking slowly (feel free to comment otherwise now that you know the truth!).  And even before I identified my increased verbal lethargy as chemobrain, I recognized my occasional difficulty forming sentences as a time to be intentional about having patience with my ailing self.  Cancer takes lots of patience: I've had to be patient when I couldn't cook or sleep through the night or drive or poo or lift heavy objects or return phone calls, not to mention put my whole life on hold for three months to kill Grazelda .  So I have every reason to give myself time to think and to speak, and who cares if someone has to wait a little bit longer to hear what's dawdling through my head?!


Tomorrow's Bonus Bleomycin Wednesday may be my last chemo treatment ever!  And it might not be, but we'll hope for the best - and that I'll feel good enough to go finish fixing my bike afterwards.

PT/INR

I had another blood test this morning.  Not the blood test (that's Friday), just one to make sure I'm healthy enough (i.e. recovered from the last dose) to get chemo on Wednesday, and also, as always, they took a (vile) vial to measure the thickness of my blood.  This is called the PT/INR and stands for Prothrombin Time / InterNational Ratio, and I get it checked about twice a week.  As always, I got a call from my nurse Shirley in the afternoon telling me that my PT/INR was low, once again, and that I should basically double my blood thinner for the next few days.

It was only a matter of time spent getting poked twice a week in order to get a phone call telling me that important number before a graph came out of this one, too. 

PT/INR vs. time

And here is my deep thought of the day: If I met someone who hadn't met me before, they wouldn't know what color my hair is.

Upon further (deep) thought, I realized they'd have some good clues in my eyebrows.  No one would think I was blond.  But they still wouldn't know what color my hair is.

Upon even further (even deeper) thought, I suppose that I'm not entirely certain what color my hair will be when it returns from its chemovacation.

hm.

Two things I really really really really like

1) Contra Dancing. 

We did go contra dancing last night.  And despite the smaller-than-usual crowd, it was a great time.  The music was good, and everyone was in a goofier-than-normal mood in their Halloween attire.  I only sat one out and got to dance with a lot of people I enjoy. 

We sort of  dressed up for the evening.  Miriam dressed up as me . . .

That's the dress I always wear dancing, as it has the best twirling action I've ever experienced.  You can't see it, but she has my nametag/necklace on, too.  The braids are a relic of Margaret past (and probably future). 

I was going to do something Star Wars-esque with the bald head, but in working on a back-up plan, I fell in love with a new style of headwrap that I happened upon, so this was my costume of sorts.  This one involves a few straightpins though, so it's not too great for everyday wear.  The bald head idea will have to wait for next weekend. 


2) My Bicycle
I pumped up my front tire today (which was keeping me from riding before) and got on my bike, for the first time since mid-July.  It felt so good riding down the street, crouched over my handlebars with the wind in my helmet that I may have cried just a couple tears of sheer physical joy.

I proceeded to bike straight over to the bike co-op to work on getting it really fixed (I had a cracked rim in July, which makes it a little unsafe), and spent a frustrating and mostly fruitless afternoon looking for bearing parts to make the used wheel I found interface with my bicycle.  So currently my bike is in a less ride-able state than this afternoon, having only one wheel that is complete.  Bummer. 

On the up-side . . . I came home with grease all over my hands and had to use Fast Orange to become domestically functional again.  In my non-cancerous life I do home repair work and most days end up somewhere on the grimier end of dirty, needing to clean up, but I haven't had that chance since mid-July either.  So the Fast Orange felt pretty good, too. 

Cheese, Grommit?

I made cheese yesterday.

Ta Dah!  It's tasty too!

This is something I've been wanting to do for a long time and haven't gotten around to, or been successful at the one time I tried.  There's not much to it - milk and vinegar, plus salt and herbs to taste, but it took having Miriam (general food guru and semi-experienced cheese-maker) here to give me the courage to try it again.

I don't know what cheese has to do with cancer, but man is it satisfying! 

This week's irritation is a very minor pain -  muscle tightness? - in my mid-section.  The irritating part isn't that it hurts: it doesn't hurt unless I poke it right or move in the wrong way.  Six months ago I would have thought, "Oh, I must have strained some ab muscle pulling that cooler up on the roof!"  Now I wonder if it's from battling constipation, I worry that it's a sign of some bizarre infection, or maybe it's my other ovary going bonkers.  I even called my chemo nurses to see if they had any explanations or thought it needed to be checked out (watch it, don't worry).
That's what sucks about cancer (how often have I used this phrase?) - the nights I spend in fitful sleep, worrying if I have an infection or if the sore throat that won't go away is a sign of some larger nastiness.  Some days the worrying is much worse than the discomfort.  

But I don't spend a whole lot of time worrying - there's too much else to do.  I'm hoping to get in a contra dance tonight, in costume, if it comes together right.  And then there will be pictures.

Cancer and . . . Halloween

It was Bonus Bleomycin Wednesday today, and the closest day to Halloween I was scheduled to go into the chemo room.  Now usually I don't really get into Halloween that much.  But having chemo - and being bald! - near Halloween seems like a situation that begs to be taken advantage of, especially around other folks in the same, involuntarily bald situation.  So I put on the nicest wig I own and wore it into the chemo room.  I got a characteristic high five from Dr. Hank Hallum, Dr. Jennifer Hallum assured me it looked natural, and I got a lot of smiles from everyone else. 

In fact, it was such a good time, I wore it to the grocery store afterwards!  (Miriam is my witness).  I am developing even better costumed plans for Tucson's big deal Day of the Dead parade, as hopefully Grazelda will be quite gone by then.  I will definitely post pictures when that time comes.  

Incidentally, I googled "chemo" and "Halloween" and there were approximately 2 semi-relevant posts.  Is this not an obvious time to bust out an extravagant costume and socially cash in on months of baldness?!  

I'm feeling well, the drip was fine today, and I even went on a walk that required long sleeves, a sweater, a scarf, and the hat that I wore, well, it left me wishing I'd picked a warmer one.  Happy Early Halloween!

The Great Anti-K Vegetable List

I love vegatables.  Especially green ones.  Especially spinach, brocolli, mustard greens, beet greens, asparagus, brussel sprouts, and all the beautiful greens that are in season in Tucson in winter.  (It's winter in Tucson now - high today was 59!!!)  I'm not allowed to eat any of these things because they have lots of Vitamin K, which would work against my bloodthinner.  This is nothing new, but it remains very frustrating to me.  You have no idea how delicious a big green salad sounds until you haven't been permitted greens in months, and your first hope of one lies months away. 

And my eating habits have suffered.  It seems so stupid and backward that getting cancer encourages - and sometimes even forces - me to eat less healthfully.  And then those irritating books about cancer that try extra hard to encourage people to eat their veggies to build up their immune system and help their body to combat cancer say things like,  "Broccoli tastes much better when you think how it will help you get well."  Yeah, broccoli tasted pretty dandy to me too, when I was allowed to eat it!  I am trying my best to not become bitter, but it's hard work. 


So, yesterday, Miriam and I sat down with a cookbook and wrote a list of vegetables with low-to-moderate Vitamin K levels so I could have a list of positive things to look at.  (And I just love lists, of course).
So here it is:
 

The Great Anti-K Vegetable List
carrots
celery
corn
cucumber (peeled)
eggplant
green beans
mushrooms
onions
parsnip (what do you do with parsnips?)
green pepper
red pepper
potato
pumpkin
summer squash
winter squash
sweet potato
tomato

We had sweet potato black bean burritos for supper tonight and they were very good.  I think I can deal with this list for a few more months, but boy howdy will there be a Great Green Party when I get off my rat poison!

Further Adventures Without Hair

It happened again today: I walked out of the house without a headcovering of any kind.  I went back for it when Miriam patted me on the head to remind me, but I continued to almost-forget-it in the car every time we got out.  Tah Dah!  I've reached the point where I'm tired of wearing a headcovering. 

Part of it is physical - between chemotherapy and oopherectomy (your word of the day meaning "a surgical procedure to remove one ovary") my hormones are off enough to give me hot flashes.  The hair on your head is simply awesome breathable, flexible, portable insulation, and I miss its utter functionality.  My head is cold unless I get a hot flash, and then I need to not have fabric or yarn or anything up there and in very short order, too. 

But the other part of it comes down to Margaret the Minimalist winning out over Margaret the Lover of Textiles And Mirrors.  I have a sweet collection of adornments for my head that I can don, wrap, or tie with skill and look really good.  But it's one more thing to do before I leave the house.  If I'm not going to put on mascara, do you really think I want to take time to wrap a turban? 



Today the power in my duplex went out.  I went outside to investigate, and the meter was totally fried.  So I called the power company, and they (eventually) sent someone out, after we'd cooked a lovely candlelit supper.  I went to talk to the electrician and definitely didn't put on a hat.  Not only do I think I look tougher without hair (and I enjoy looking tough around other tradespeople), but it's my house:  I'm not going to dress up for some repair person to come fix my meter! 

So here I've arrived at the place that many of you probably knew I would end up all along.  I'll still wear headcoverings in public in general.  (As one of my inspirational cancer books says, "When you walk into a room, baldness announces your illness even before your name," and I don't want to be 'that chick with cancer').  But I am more and more consistently bald around those who know me. 

Medical Report: My blood still can't decide how thick it wants to be.  Very irritating.  I still can't eat green veggies.  Even more irritating.   The "bad weekend" after the "bad week" is over.  My throat's better, my bloating's down, and I have energy again.

The Rug

This is the rug my mother made.

The very large, very thick, every stitch hand-crocheted out of hand-cut strips out of hand-picked Tucson thrift store t-shirts. 

My mom flew back to Ohio yesterday, after her third trip to Tucson in three months, and I think that this rug (which took every bit as much work as it seems to have) was among the least of her labors while she was here.  Taking care of me, cooking, cleaning, moving, fetching, reading aloud, calling my friends, driving me to chemo, waking up with me in the middle of the night, keeping me as comfortable as she could.

Thanks for the rug, Mom.

Frozen Banana!

It was a hard week in Tucson, my chemo hometown, and kind of hard to describe beyond detailing my dynamic body mass (I don't have a scale, but I wouldn't be surprised if I'm back to 120 by this evening).  The expected side effects came on schedule and are abating - tender armpits, sore throat, fatigue, minor constipation.  And yet, by Thursday I just felt awful, just totally knocked down.  I didn't have the energy to write eloquently about it either.

I made it, though.  My friend Miriam is here to take care of me now, and I know enough about this yucky cycle to make plans for tomorrow beyond resting and reading.  Oooo, like blood test tomorrow morning!

My new favorite food:  frozen banana  (extra cold + extra potassium = yummy healthy goodness)

By the numbers

Like most visits to a doctor's office, every day at my oncologist's starts with me hopping on the scale.  I am always curious.  Regardless how much I eat, I can't get the numbers to go up, except on my bad weeks.  Then they jump by leaps and bounds.  And so, every day on the bad week, after being pumped full of saline and various forms of poison I pass the scale on my way out and am tempted to hop on it again, just to see how much weight I gained in the intervening 4-5 hours.  Today I went for it, and here is more information about my weight than you ever wanted to know:

Monday morning (as every Monday morning since I started this crud) I weighed 120 pounds.
Tuesday morning I weighed 124 pounds.
Wednesday morning I weighed 128 pounds.
This morning (Thursday 9:30 am) I weighed 133 pounds.
This afternoon (Thursday, 2:00 pm) I weighed 138 pounds.

Let's recap.  That's increasing my body weight by 15% in less than 4 days.  Today, while I was in the chemo room, I gained weight at a rate of more than 1 pound/hour.  But it's all the good stuff: saltwater, poison, and anti-nausea drugs. 

So I still feel the crummy kind of pudgy and at least 35% less adorable than this:

More Tired, More Bloated

Hard to believe, but it's true, so I'll make this one short and go to bed with a book.  At least the week's more than half-way done.

Good night,
m

Tired and bloated

Five days of chemo sucks, and it's only Tuesday.  The best part is sleeping I think, and I did get a Benedryl Drip Trip nap in today along with a Late Afternoon Nap.  Plus, they cut my steroid dose in half, which means more sleep and less bloating for me.  It's the simple pleasures in life that count, ja? 

Cancer and . . . Spa Treatment

Therapy 4.1 is complete.  I started off the week sitting next to a woman there for her first treatment.  She looked about as scared as I felt the first time I walked into the chemo room.  I didn't know which of my stories to tell her to find the balance between
"This is really crummy and the side effects (insert long list of my complications here) are no fun at all, and you'll get through it"
and "It's really not bad - by your second week off you might be feeling more or less back to normal !" [she doesn't even have Bonus Bleomycin on the off-weeks]
and "Every body's different, not to mention our drugs and doses and diagnoses (we do both have ovarian cancer) are totally different, so I can't begin to tell you what it'll be like, but the nurses are really nice and good at their job."
Even though I didn't know what to say, I kinda felt like an old pro at this whole chemo thing, so I showed her how I tie my bandanna.  And I got the best Benedryl Drip Trip Nap since Round 1.

For the more wholly enjoyable part of therapy today, Mom and I went to a foot reflexology place where a friend had given me an hour-long massage.  It was simply wonderful.  I'm used to going places to have people focus on my body, but usually in those places they poke me with needles and put their fingers where I'd rather not have them and measure embarrassing things like my urine and mostly make me feel crummy.  Here this great Chinese woman spent a whole hour focusing just on making my body relax and feel good.  Heck, it would have felt good just to soak my feet in the tub of hot water for an hour.  (Thanks, Betty & Harvey!!)

Also on the Spa Treatment theme, I got a haircut yesterday.  "A haircut?" you ask, incredulous, "Margaret, no offense, but you're Bald as a Ping Pong Ball!"  Well, it's hard to see in the pictures, but I'm not actually that bald.  I have very thin hair that up until yesterday was 1/8" long and, also up until yesterday, I had left my thining sideburns in tact in an effort to preserve the illusion of having hair under my headcovering.  In the past couple weeks, I've decided that this deception was failing entirely, not to mention the out-of-context sideburns giving me a disconcerting Elven aspect when I went bareheaded, which I almost always do at home.  So my friend and constant hairdresser in Tucson, Kristi, came over and got as much hair off with a clippers (no attachment) as she could.  We decided against a razor because my blood is so thin, so there's still a little little stubble, but in my personal opinion, going even balder and loosing the sideburns makes me even cuter than before.  I guess a little bit of arrogance and a very stubborn kind of vanity are good tools to have in one's Living With Cancer Toolbox. 

As I was walking out of the lobby at my oncologist's, I saw an elderly woman in the waiting room in a hospital gown and housecoat and no headcovering.  "We have the same haircut!!" she exclaimed.  She told me how hers was growing back like a stiff, white cotton ball, and I told her I've seen pins that say "Hair by chemotherapy."  I didn't point out that in fact, she had a lot more hair on her head than I do, hers being easily 1/4" long.  That would be splitting hairs, and ours are thin enough already, thank you.


In Exciting Medical News: I got my AFP (tumor marker) count from Friday.  Three weeks ago it was 27.  Now it's 14.  Score another 13 points against Grazelda.
This is good news because it's still above 8, which means I still have cancer and can continue to use it in conversation/plying my mother to rub my feet/general whining.  This is slightly less good news because it's still above 8, which means I still have cancer.  I'll talk to my doctor on Wednesday and get the details, but I think that essentially sets the bar for this round: I need 6 or more points to win.  Loser goes back for overtime chemo cycle(s).  Great pep-talk I guess, but it doesn't feel like there's a whole lot I can do to put more pressure on her besides sit in the chair with the drip in my port.

More Tales From The Drip tomorrow.

Cancer and . . . Camping

Church campout was this weekend, and I was pretty thrilled that it fell on the very best time in my chemo cycle. It was good for all the reasons I usually love Shalom (Tucson) church campout - get out of the city into beautiful mountains, hang out with some of my favorite people without any work to get done, doing creative things like making music and delicious camping food and acting bizarre skits, going on walks and hikes in the desert, and did I mention the mountains all around us?

This year there were some new reasons to love campout, too.
First, there are several families with young children who've moved in during the past year, so this year we had ample young folks with lots of energy for spontaneous games of badminton, Set, tree-climbing, dramatic acting, etc. That is to say, if my entire right side hurts tomorrow, it's not some weird chemo side-effect - it's because I got to hit around a birdie with some new friends who really, really like hot chocolate (making me, as the designated Bringer of Hot Chocolate Mix, a very, very important person).
Second, I took along the accordion, on which I can play songs just written as chords and melody (provided the chords are all major and one of these: A, D, G, C, F, or Bflat - bonus points if you're a band geek who recognized the circle of fourths!). But you can do a surprising number of songs with just three or four chords, so I got to play with the impromptu folk band that tends to assemble itself at such occasions, as well as for Sunday morning worship. If you haven't sung Over My Head accompanied by a free-reed instrument, you need to broaden your hymn-singing horizons.
Third, my Mom was there. Good things are even better when you get to share them with people close to you.

So maybe the title of this post is misleading, as camping had very little to do with cancer, which seems like a sensible sort of turn for my life to take. Ah, but of course, tomorrow (Monday) begins the "big" week again. I'll gain 12-15 pounds by Wednesday, get stopped up by Thursday, and feel like my whole upper body is bruised for all of Saturday and Sunday. They'll knock me down, but at least I know what's coming. And the plan is that this is the last chemo cycle, and then I'll be done with that nastiness.

Moving Day, Again

Today Mom and I moved all my stuff, again, to my duplex where I'll be spending the rest of the year. Well, mostly Mom packed and moved and did laundry and cleaned, and I unpacked. I felt less pathetic than last time; I did a little more than the sitting and pointing that was the last couple moves, but I still found myself lacking in energy and fortitude of the arm (the thrombophlebitis is a little worse today). So, I am very grateful for a Mother to do the heavy lifting (literally and figuratively).

There were also some friends to welcome me home - and they all wore their headscarves for the occasion!

Dante the Lion

Fredrich Bear the Great

Big the Dog

Gorge the Monkey
(This picture is especially for Adele, probably the youngest reader of this blog, who often wants to see pictures of monkeys - I don't know if a blue sock monkey counts, but it's the only monkey I could find in my house!)

Bald as a ping-pong ball

Today it happened. I walked out of the house to go to the store and totally forgot a hat or scarf. I probably wouldn't even have noticed before I got out of the driveway if my mother hadn't pointed it out. And something about it being dark or evening or today made me really just not want to go back for a headcovering. So I went to the store bald.

And it was really anti-climatic.

I didn't get arrested or stared at. No one came up to me to tell their cancer story or ask me about mine. It probably helped that I went to the pharmacy and stood in line with all the other sick-o's, so that was perhaps a more "acceptable" place to have alopecia.

I would note that the breeze feels pretty nice on my scalp.

Like I said. It was really anti-climatic.


Lest this post be the same, here's the sketch from Free to Be You And Me that's been going through my head since I lost my hair. It's the line "bald as a ping-pong ball," even though I'm not quite that bald:

Therapy 3.7

I had chemo today and am now done with round 3! The score comes out on Monday. My mother pointed out that if it's below 8 (8 being the new 6 due to a change in how they count), I may have to stop saying I have cancer.
Does this bump me into "milk it for what it's worth" mode? Possibly, but I can still rightfully claim to be on chemotherapy, and that stuff really does make me sick on my "big" week.
Do I have some trepidation that for whatever reason the AFP will start going up instead of down and I'll have to be sick for a long time or face mortality or something? Yeah, that too. Having text book germ cell tumor cancer almost seems too simple - it grew quickly, was discovered early, hit a young woman, responds well to a time-tested chemotherapy regimen, doesn't spread to my other ovary, doesn't come back. (oh yeah, except the blood clots). The odds remain in my favor, and my bad luck has to run out sometime, eh?

Meanwhile, worrying doesn't keep me up at night. I feel too good for that. I felt almost guilty, bouncing into the crowded chemo room today, taking my poke in the port without the numbing spray, talking to my nurse Shirley about the hikes we like to do around Tucson instead of about my bowels, and leave knowing that while most people leave feeling tired and various flavors of crummy, I would probably feel good enough to go shopping and bowling that afternoon (for t-shirts my mother will crochet into rugs and for my work, respectively) .

Although . . . (1) I did wake up this morning with what is probably some more superficial thrombophlebitis in two spots on my other arm that makes it hurt a little to straighten and forces me to bowl granny style or left-handed, the former being solidly more successful than the latter. This is not surprising, as my blood has tested as too viscous the last 3 times and so we're re-adjusting my dose. And (2) I think I've started to have little moments of hot flash. It's hard to tell as the weather has taken another turn for the warm, but in my situation, hot flashes would also not be out of the ordinary: it turns out that both chemotherapy and having 1/2 the ovaries my body is used to can mess with your hormones.

The Fall Fashion Guide

Fans everywhere have been clamoring to find out: What's on the head of the baldest gal' on the block these days?

Clamor no more! Wonder no longer! The Fall Fashion Guide is here with the most recent additions to Margaret's collection of fabulously cute headgear.

Turbans are definitely "in." This stylish wrap (available at Plowsharing Crafts, St. Louis' premiere fair trade boutique) was a birthday present (Thanks Sam & Rachel!), but it took some weeks perfecting my Turban Technique to push it into my "faves" stack for the fall.

Crochet hats are doubly "in!" These two lovingly hand-made toppers (by a wonderful woman in Topeka - Thanks Carolyn!) top my list for warmth and adorability.

And knit hats are "in," too! You just can't beat the variety of yarns with colors inspired by Arizona and hand-made by a wonderful woman in West Chester (Thanks Cynthia!), except if it's with the halo effect made by eyelash yarn on the brim. Dust off your accordion for an accessory that really shows the world your sense of get up and Polka!

As the weather gets cooler, and highs dip below the 90's, (or if right-wing ultra-fundamentalists take over the country), I hope this guide gives you some ideas to keep your noggin comfortably covered and warm, without sacrificing your good fashion sense.

Cancer and . . . Accounting

When I took on the project of killing Grazelda, it basically became my full time job. On the 5-day chemo weeks there's not much time for anything else after 4 hours of chemo, the drive, and the requisite nap. But there's plenty to do on the 1-day chemo weeks, too: Learn all my drugs (they now take up half my kitchen table), keep track of their uses and doses and interactions, memorize the Vitamin K tables, go in for bloodwork, brush my teeth 4 times a day, sort through insurance claims and bills, tabulate my medical mileage, practice accordion, post on my blog . . .

I don't think I've mentioned health insurance yet in this forum, probably because it's such a hot issue, and I don't know enough about what is going on nationally to write intelligently about health care reform. For now it's enough work to keep track of my own insurance and bills while dealing with chemo. I do have health insurance, through my employer. In fact, I have pretty good health insurance, for which I am tremendously grateful, because to put it simply, cancer is not cheap.

I don't make myself do anything on my bad weeks or when I'm not feeling well, but I do keep track of all my medical expenses and match them with insurance statements and bills and receipts. [Okay, so, actually I do this for all of my expenses. It's not that I'm anal, I just enjoy seeing the numbers reconcile at the end, along with knowing about my cash flow. I started as unit treasurer in VS and I simply can't stop.] Now, medical bills get their own spreadsheet and have their own special challenges. For example, my co-pay for chemotherapy is $25 except on Tuesdays and selected Fridays when it's $15. (That sounds like something I'd make up, but I didn't.) Of course it took 2 months of trial and error, and a couple rounds of phone tag with the billing office to figure that one out.


Obviously, the health care system is very broken and much could - and should - be said regarding how to make it better. But here are two reasons I am grateful today:

1) Today I had a breakthrough moment with a bill from my oncologist I'd been puzzling over for weeks, and it made me realize how glad I am to be addicted to accounting. If I didn't derive a strange pleasure from recording and manipulating all that data it would be a large burden in what could be an already very stressful situation (research seems to indicate that cancer causes stress).

2) While I was scouring this bill, my eyes wandered over to the other column of numbers, the ones paid by the insurance, and a really, really big one caught my eye. Now, I know chemotherapy is expensive. Each treatment can easily run about $1000 (charged to the insurance). That much I had gleaned from skimming the insurance statements as they arrived semi-weekly. But this bill was more thoroughly itemized and it charged $7901 on this one line. It turns out that's how much the immune-system-booster-shot (Neulasta) I get on Fridays of the 5-day weeks costs: $8000 for one shot!!! Once again, I am so so grateful I have good insurance.

Cancer and . . . Pumpkin Soup

When you get cancer you're supposed to use it as a call to finally realize all those dreams you had been dismissing as impractical or putting off till later, right? Like making pumpkin soup in its own shell . . .


Success!! The pumpkin held, and the soup was good and salty enough that I could taste it. Thanks to Rachel for having the mad impressive muscle and steely courage to get it in and out of the oven.

Other happy events today included:
My mother arriving from Cincinnati.
Baking chocolate chip cookies.
My first ever impromptu accordion recital.

Living the Dream,
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True Confessions of a Cancer Patient

It was caught on film, so I guess I should confess: I went hiking yesterday.

Not like just a walk in the park, or a stroll in the desert, but a bona fide destination hike, like the kind if you came to visit me in Tucson I might take you on if I didn't have cancer: I got some friends together and hiked out to seven falls. It was a little longer than I remembered. By the time you get to the trailhead and all the way there and all the way back it turns out to be a little over 8 miles. The weather was beautiful and we took it pretty easy with plenty of breaks for water and snacks. My friend Rachel who's visiting from St. Louis even carried all my extra water. I was tired at the end, and had puffy fingers (from blood pooling instead of chemo-induced liquid retention. Yes!!), but I don't really have sore muscles today. And then in the evening, we went to the international festival downtown to enjoy the ethnic food and variety of local performers with international flavor.

Now, in some books this whole episode is entirely against the Rules of Proper Behavior for Cancer Patients. I mean, I feel a little bit like a fraud, telling people I have cancer when I can hike 8 miles and still have the energy to stay out late eating greasy gyros watching Bollywood dances. It would be a more convincing act if I spent most of the day laying in bed being waited on and lit candles and took bubble baths and started oil painting.

This not an inspirational tale about the woman with cancer who wouldn't let torturous nausea and fatigue prevent her from going out and proving herself. The simple truth is, I feel great. I felt great yesterday, so I went hiking and festival-ing and had a blast. I don't always feel great (see posts from last weekend), and then I do spend a lot of time laying in bed being waited on - a bubble bath doesn't sound bad. But I feel great now and will probably feel great for the next week. Besides, the accordion has so much more . . . oom pah than oil painting.

Here's the rest of the photographic evidence of Margaret's Unorthodox Cancerous Adventures:
(Rachel's the one with the hair).

Tonight's project is dinner. We're hoping for pumpkin soup in its own shell, but can't promise anything about the integrity of our particular pumpkin's flesh. The recipe is from here.

Today's Cancerous Disappointment: Movie theater popcorn (at the rental store) is unsatisfyingly unsalty.