Getting Rid of Grazelda

g.

2011-01-26T20:09:00.000-07:00

I’ve heard about The Healing Process in tones that make it sound like something to be approached with lots of Prayer and Yoga and Sprouted Grains. For me, it’s a little more like getting over an intense crush: I mark progress by how long I go without thinking about it. Perhaps eventually I’ll go an entire day without thinking about Grazelda, but that day has not yet come and maybe it never will: After all, in some way, the aftermath of Grazelda is the rest of my life.

I do mark my milestones, though. One year to the day after my last chemo treatment I got a tattoo on my backside, about at the height Grazelda used to reside. On my front I have a 7-inch scar from my belly-button straight down because one egg in my right ovary attacked me. And now on my back I have a mark that reminds me of how I got through. g. reminds me of how well I can endure, my ability to write a darn good blog, and the sense of peace that I found pervaded my life throughout illness and treatment. g. reminds me of all the cards and emails and prayers and scarves and visits and meals and even the blog-lurkers. g. reminds me of the selfless love of my parents and sister: the time and the tears they spent and the rugs and the eggs and lasagna they made.

Why g.? Right now it’s a g for grazelda. Lower case because she doesn’t deserve the respect of capitalization, or maybe because I usually sign my own name on e-mails in lower case as some bizarre form of e-humility/rebellion. A period because she’s gone, or maybe because I got mine back. g. could mean so much else, too: an initial of a future lover, a nonplussed reaction to the world as it is, or 9.8 meters per second squared. Yup, I now have a universal constant on my butt.

Photo by Melissa

Some dear friends made this beautiful and delicious cake in honor of the occasion, one candle for my first un-cancerversary.

Photo by Jennifer

This year, at the All Soul’s Procession, I walked in memory of Grazelda again. [see last year’s post] I refashioned an old pair of pants so that the world could see the g. (and nothing else!). I wore the same shirt, but left the front down, so my scar was not the focus. This year held more closure because I know that she’s dead and gone and not coming back.

Today is not a cancerversary for me. My life is not very much about cancer any more. I spent this fall dancing a lot, finishing up pre-nursing classes, working and biking and cooking good things to eat. One year later that’s all that remains: 2 scars, 1 tattoo, one less ovary, and a crop of hair that’s less curly with every trim. I have begun to associate with the Tucson chapter of the National Ovarian Cancer Coalition, and am grateful for the camaraderie of fellow survivors. I will continue to work alongside them to raise awareness, so that women can catch ovarian cancer early, and be cured. That’s one cancer-y thing that will remain in my life. But this blog is about Grazelda, and she is gone. So this will be my last post.

Wishing you plenty of greens and plenty of hair,
peace and health,
and good friends when those things fail,

margaret

My Favorite Cancer Comics

2011-01-26T19:33:00.000-07:00

This blog is about to come to an end, for real this time. But I found these (like most comics at xkcd.com) express two things I tried to say throughout Grazelda's residence - stick figures are so articulate! So here they are, inspiration for you:

More Toes!

2010-09-24T16:17:00.000-07:00

Aunt Gayle's Toes


Grandma's Toes


Dad's Toes (above); Mom's Toes (below)

Thanks to everyone who has painted your toes (and it's not too late!). Your bold adornment is helping to fight cancer by raising awareness. And, as promised, triple bonus points go to DAD! Thanks, Dad!

(If you have no idea what this post is about, read the Teal Toes post).

Teal Toes

2010-09-07T20:34:00.000-07:00

For the first time in probably eight years, I've painted my toenails. And not some innocent shade of red, no, no, the bold, beautiful, still-feminine-if-somewhat-ambiguously-situated-between-blue-and-green color known as teal.

Why would Margaret be waltzing around with blue-ish toenails . . . and why is she writing about it here??

Mainly so people will ask, because then I can tell them (and you) that teal is the "color" for ovarian cancer, and September is Ovarian Cancer Awareness Month. I had ovarian cancer, and it sucked, but I got off relatively easy: the 5-year survival rate is under 50% if it's not caught at an early stage (NOCC). You should know the symptoms, so if you or someone you know has them for more than 2 weeks, you can get to a doctor ASAP. The big bummer about ovarian cancer is there's no screening for it (your PAP smear is an important screening for cervical cancer, but cannot check for ovarian), symptoms are often fairly general and not acute, setting on gradually, increasing the odds that it's misdiagnosed. As with so many cancers, catching it early is the key to surviving.

According to the Mayo Clinic, symptoms include (and these are quoted directly)

Abdominal pressure, fullness, swelling or bloating
Urinary urgency
Pelvic discomfort or pain

A woman may also experience:

Persistent indigestion, gas or nausea
Unexplained changes in bowel habits, such as constipation
Changes in bladder habits, including a frequent need to urinate
Loss of appetite or quickly feeling full
Increased abdominal girth or clothes fitting tighter around your waist
Pain during intercourse (dyspareunia)
A persistent lack of energy
Low back pain
Changes in menstruation

I was relatively lucky in that I experienced almost all of the above and very suddenly, so there was no ignoring it. But unlike Grazelda the SuperOvary, most ovarian cancers grow slowly.

So, there's your public service announcement for the month. And no, I didn't make up the Teal Toes bit; I'm part of a movement (www.tealtoes.org), and you can be, too. Just pick up some nail polish, do your toes, and when anyone asks, tell them you have a friend who had ovarian cancer, why it's so hard to catch it early, and what the symptoms are. Bonus points if you send me picture (I'll post it here, unless you don't want me to), and triple bonus points if you're male.

Cancerveraries

2010-08-29T19:32:00.001-07:00

Curls, curls, curls!

One year later, I am healthy. I am strong and fit, with a head full of hair that still definitely qualifies as curly and is long enough to have already warranted a haircut. I don't have any more foreign objects in my veins, and I've been told that my big scar kind of makes it look like I have well-defined abs. Last month I had my 3-month (that's right: it had been 3 months) oncology checkup. Going to the familiar office was a little like a reunion, and my nurse Shirley took time to have the sort of visit that leaves me feeling full, encouraged, connected, and loved. My AFP tumor marker was a perfect 3.8, and there are no other signs of return, AND I don't go back until October.

For the past month I've been playing the "One year ago today . . ." game. Sometimes emotional, sometimes hilarious, sometimes mind-blowing. This summer has been rather busy, so when yesterday I finally sat down to write this entry, I found a need to read the blog from start to finish. It's quite a read, and yet there is so much that I didn't post: lots of pathetic/dramatic stories from before diagnosis about the experience of being profoundly sick, some hilarious stories that are inappropriate for the public forum, and there were so many other people who did so much and were never mentioned.

Looking back, in the beginning I know I was so overwhelmed with gratitude, helpless gratitude, that I couldn't even write about all the people who were so kind and thoughtful and giving. During those first few weeks, my parents and my sister and my roommate Jodi were right there all the time, and I was surrounded by love from near and far with visits and cards and emails and phone calls, which all brightened my spirits, even when I didn't return them. I wish I'd have written more about other people.

What am I doing to commemorate these cancerversaries? Mostly, talking about it, turning over memories with my family and friends and re-reading emails and posts. I have impressive plans for Nov. 4, one year since the last chemotherapy treatment [Hint: I'm not getting HANK (my oncologist/surgeon/encourager) tattooed on my bicep with a big heart]. That should also be my last post.

Thanks to all who noticed the 1 year mark and wrote or called or thought about me. You were wonderful a year ago, and you are wonderful still.

The Green Party

2010-06-04T21:10:00.002-07:00

The party was a great big, green hit!

Along with the Great Green Vegetable Pasta came salads in all forms: Broccoli Salad, Greek Salad, Nuts 'n Greens Salad, several Spinach Salads, "Joan's Fantastic Green Spinach, Almond, and Strawberry Salad," "Kyle's Salad With The Rocking Dressing," and others.

We had ¡KALE PESTO!, Parmesan Kale, Kale/Chard Quiche, Kale Stirfry, Spicy Kale Chips, Brussels Sprouts, Spinach Deviled Eggs, Black Eyed Peas, Broccoli Soup, Spinach "Brownies," and Shifted Mint Brownies. (Can you tell I made everyone write creative labels for their dishes?)

Everything was delicious, although I have to say that my favorite (=good+simple+healthy+novel) were the Spicy Kale Chips by Carol. The recipe was about like this. Unlike your typical "Covered Dish" event, there were almost no desserts, and I don't really think they were missed.

Of course, better than the food were the people. My duplex has never had so many people inside, and certainly not so many people dressed in Green! Even without cancer, I am surrounded by people who care about me enough to indulge my green fantasies, and together celebrate our victory over that odious tumor-ovary Grazelda.

I wish that each of you readers could have been there, too, but I am grateful for your thoughts, virtual devotion, and even green recipe recommendations. I am still averaging 2 bunches of cilantro a week, and I feel great: I run at about 110% on days that I get enough sleep, and I'm hitting the ground running in my summer class of chemistry. And my hair? Still very curly. I still haven't shampooed it. I still haven't cut it. Yes, it's headed swiftly towards the 'Fro Stage.

And here's my favorite Green Party Picture:

Bonus points for finding Bryce's spoon!

You're Invited to the Green Party

2010-05-10T22:07:00.000-07:00

In honor of the demise of Grazelda the deviant ovary, to celebrate the close of chemotherapy, coumadin, and cancer, for the general merriment of all and enjoyment of foods rich in Vitamin K, if you're reading this blog post,

YOU'RE INVITED

to a potluck of foods that are green.

What: The Green Party
When: Friday, May 21. 6:00 pm.
Where: Margaret's House. Tucson. Email me for directions.
What to Bring: a dish to share that contains some substantial amount of Vitamin K (ingredient suggestions below)
What to Wear: Green, of course!
Why: "Because I'd rather eat spinach than chocolate. Well, most of the time . . . " -mp

There are rumors of the Great Green Vegetable Pasta, maybe some All-Green Twister, and Jodi's in town!

RSVP if you get a chance to pennermk AT gmail DOT com

***********

A Dozen Foods Containing Lots of Vitamin K:

Leafy Greens (except iceberg lettuce)

Brussels Sprouts

Broccoli

Green Onions

Asparagus

Cilantro

Cabbage/Sauerkraut

Okra

Black-eyed peas

Green Peas

Parsley

Endive

(because I had to do an image search to find out what an endive looks like)

An exhaustive list can be found here: http://www.nal.usda.gov/fnic/foodcomp/Data/SR20/nutrlist/sr20w430.pdf

Oh yeah, as far as I can tell, my physical health has never been better. Yanking the port went well. My scar is healing nicely, and I'm working on a necklace - if anyone has experience converting medical devices into jewelry, drop me a line.

Farewell to Port

2010-04-21T22:36:00.000-07:00

Here are the boring medical details, as promised:
I had my (bi-)monthly oncology check up last week and it went swimmingly. My AFP was a 5, and I've apparently been on blood thinner long enough that we can trust my clots to be gone. So I could go off my blood thinner and "dive head first into the salad bar," as Dr. Hallum put it, EXCEPT that I still have a foreign body lodged in my vein, in the form of a port-a-cath, the thing they put in my chest in September so they wouldn't have to start IVs all the time. And I'm stuck on blood thinner till I have that taken out. I hesitated for about .2 seconds before telling them to pull it.

The risk, of course, is that Grazelda might come back. We're not yet at the big One Year UnCancerversary, when odds of recurrence plummet. And it's a surgical procedure, they knock you out at least partways and cut you open, and you have to sleep all day, while your sister is totally wired and bouncing off the walls after getting the LARGE coffee at the hospital cafeteria. (Well, that's what happened last time.)

Many people live happily with their ports in for many years. Those people either don't have clotting problems or don't like spinach as much as I do. So, I'm taking the risk, and this Friday (which is almost tomorrow) at 7:30 am Pacific Time at Northwest Hospital in Tucson, I'm getting my port out.
I'll miss it, I think. I play with it and tap on it and slide it around under my skin. I push on it occasionally and think, "Beam me up, Scotty!" On the other hand, it looks a little odd especially with my sleeveless summer attire, and it rubs a little when I have a backpack on. And now that I'm not using it anymore, I'll gladly trade it in for copious quantities of basil and cilantro.

picture by Kristi

Dinner

2010-04-19T21:37:00.000-07:00

Still Life with Porter

2010-04-17T11:09:00.001-07:00

Here's what I bought at the grocery store today:

(I don't get to eat them till Monday, but still . . . life is good.)

And I'll save boring medical details for another post.

It turns out . . .

2010-03-21T20:01:00.000-07:00

. . . undeniably,

genuinely,

when-it-gets-longer-it-might-be-able-to-go-boing-boing

curly.

Yup - that's what my hair does if I get it wet and scrunch it a little bit and let it dry without putting a bike helmet or work bandanna on. So I don't get to see it that way all that often, but I love it. There's no way to tell if curly is from the chemo, the fact that this crop has never been cut, or my "no-poo" routine - I have started washing every few days with baking soda and a vinegar rinse on Saturday night. It's also baby-soft, and I do obsess over touching it.

My life, like my hair, is settling into its new normal. My left ovary has regained function and is picking up the slack that Grazelda left behind (unfortunately, having only one ovary does not mean you only get your period every other month). I'm juggling work and rocking my classes and biking wherever I can and cooking good food and dreaming of broccoli. I have very vivid dreams about broccoli.

There was a day a couple weeks ago that I felt bad at breakfast. Lots of pressure in my lower abdomen depending on how I sat. Nothing I did seemed to relieve it. It wasn't horrible, but it was the kind of pain I had last July that was the very first sign of cancer. So after a little hemming and hawing, I called in to my oncologist. I felt better the next day, but went ahead and had the blood test to confirm it: With an AFP at 3.8, I still don't have cancer. I guess normal people with this sensation would just think they had gas and blame it on the mac and cheese the night before, so maybe I do feel a little more fragile.

On the other hand, my cousins Noah, Elissa, and Dustin came out at the end of February, and we backpacked down into the Grand Canyon and back out again in two days. It was beautiful and challenging, a sort of victory lap for getting Grazelda gone. How awe-some to have such a powerful, strong body that can do amazing things! And it doesn't even matter that when we stopped at Chipotle for supper on the way back, we were hobbling so badly we thought people might assume we were drunk and refuse us service.

Spring break is over. Curly hair is in. And the Grand Canyon is really, really deep.

Peace and Health and Love,
margaret

WOOHOO it's 3.2!

2010-02-11T20:20:00.000-07:00

I have been noticing lately that on warm days, after my car sits in the sun for a while, and then I open the door and get inside, it smells like I'm going to chemotherapy. Maybe it's that Yankee Candle "macintosh" air freshener I put in in August, or maybe it's just the warm car smell that permeated the 20 minute drives to and from the oncology office in the summer and fall. In any case, I'm very much an olefactory person, and that smell takes me back. (As do a few others - particular hand sanitizers, soaps, and definitely the alcohol swab they use to clean my port before poking me).

Yesterday was rainy and (relatively) cold, so my car didn't smell like it should, but I went to visit my oncologist anyway. Dr. Hank was pretty excited about my bloodwork, bursting into the room to give me a "high five," before even telling me. 3.2 is my latest count, which is well in the normal range of AFP produced by the liver of a normal, healthy, cancer-free person. It was especially good to see the nurses in the infusion room (although the less you get poked, the more it hurts, so my port is still a little sore from being flushed, which is almost refreshing to have such a miniscule, short-lived side effect), and they weren't so busy, giving us some time to catch up. I don't have to go again till April, at which point we may schedule a date to remove the funny plastic lump on my chest, and then, one more month, and then I can eat GREENS!!

Otherwise I'm generally happy and healthy. I'm very busy with work and school and life. I'm doing well in all my classes, loving learning, and even the rote memorization is kind of fun. I bike my commute whenever possible (generally twice a week), and some cousins are coming out to hike the grand canyon later this month. My hair is almost to the point of just being "very short" instead of "coming back in," though I may have to achieve a pony tail before I'll abandon headscarves altogether. There are hours that pass when cancer doesn't cross my mind even once. And there are nostalgic moments when I open the drawer with all my cancer cards in it and pick out a few to re-read.

I do miss the blogging thing. I get a small fix posting for my online nutrition class discussions, but it really can't compare to the caring folks here at Getting Rid of Grazelda. I hope, friend, that you are also well and in good spirits.

Cheers,
margaret

The Beginning

2010-01-15T14:03:00.000-07:00

Today is exactly six months from the day that I woke up with unusual discomfort in my lower abdomen, the first hint of this crazy time of cancer and chemo and healing. So I guess it's appropriate that this should be my last regular post, though I do have more compelling reasons for bowing out of the blogosphere. Besides successfully getting rid of Grazelda, my demonic muse, starting this coming week I'll be far too busy taking pre-requisite courses for nursing school.

"Margaret," you ask (and I know you will, because everyone does), "Has this whole Cancer Experience influenced you choice to make this career move?"

Why yes, like pretty much everything else in my life, my future plans have been influenced by cancer. I'd been thinking about going into medicine in some capacity before I got sick, but I have definitely gotten a closer look at the field and its challenges and rewards and possibilities.

Medical technology of the past fifty years saved my life and has given me back a life of the same (or greater) quality with a similar life expectancy than before Grazelda. Even Margaret the Luddite can get behind those results.

I had some fantastic care from doctors and nurses who had a vast amount of knowledge that I needed them to have, the communication ability to share it with me, and the technical skills to coax my body back to health. Especially Shirley, my chemotherapy nurse (have I mentioned how cool she is?).

I want to help people, I want to work with my hands, and I'm going to study my tail off to become the best nurse I can. I'll still be working at Community Home Repair full time, so it's going to be a very, very full year. But I don't have cancer anymore, so I have to do something with my time!

That is also to say, Thank You, dear reader, for coming along with me on this journey, being the statistics that boost my spirits, the comments that make me smile, and people who are informed about my life without me having to recount the gory details over and over again. I have never felt alone.

I'll post medical results as they come, but we're hoping for really mundane and no more than monthly. So for now, I bid you good health, good friends, and as much hair as your heart desires.

Thoughts on Death

2010-01-13T20:54:00.000-07:00

In the course of having cancer, I've spent a little bit of time thinking about death. And I do mean a very little bit, but probably more than your average, Practically Immortal Twenty-Something In Outstanding Health that I used to be/am again. I haven't spent hours pondering death, and I've taken almost no time to think about the afterlife. It's never kept me up at night. In fact, I distinctly remember my first night in the hospital being much more bothered by the prospect of being stuck in bed with greasy hair for several days than thinking about eternity or the possibility of my life being truncated. Not a fact I'm proud of but it's the truth (and my hair was already really greasy).

I guess I had been thinking about death some this past spring and summer, usually on long rides down the bike path. I haven't actually run the statistics, but my guess is I have a much higher chance of being killed in a bike accident than by some weird abdominal tumor aka my right ovary.

Death: It's a difficult subject to approach. What kinds of questions do you even ask? What happens when you die? Do you just stop existing? If I died tomorrow, would I have lived a full enough life? rich enough? good enough? Are there relationships that need mending or more attention before I bow out?
And the all-important: What hymns do I want sung at my funeral?

I don't have answers to any of these, and like I said, I haven't given them a whole lot of thought. No one else has been asking these questions either. Maybe this is as it should be. I wasn't on my deathbed and my prognosis was/is really, really good. On the other hand, cancer has a (rightfully deserved) reputation of being this super serious disease, so even though my kind of cancer is generally curable, there's this unspoken hint of a possibility hanging over the situation "Is Margaret going to die from this?" And still no one talks about it.

In our culture, bringing up death is impolite. It probably would have fallen under insensitive for someone else to bring it up, and it felt like an imposition for me to do so, as if speaking the D-word aloud might give it more of a hold in my life or indicate depression that needed to be worried about. (Recall that our culture rewards relentless optimism over realism when it comes to cancer.) But when death becomes part of reality - and ultimately, it is part of everyone's life - talking is important. Even beyond issues of having a living will or advanced directives, sharing thoughts and emotions among trusted friends seems to be comforting and even vital. If we don't talk about this big Thing, the most irreversible event of a lifetime, we leave it to be dealt with alone inside one's head. Now there's a recipe for depression!

And then, when someone becomes terminally ill or dies, we are expected to be cool with it. Yes, we can experience grief and sadness, but there seems to be an expectation to suddenly be okay talking about death, like it's the most natural, if still really weighty, thing in the world. Which it is, but that doesn't mean the conversations come easily without thought and practice.

So I have an assignment for you this week. Talk to someone you love about death. Their death and yours. And this is especially if you're a Practically Immortal Twenty-Something In Outstanding Health. Now I'll step down off my culturally critiquing soap box and give you some medical updates.

Medical Update:
The short of it: Good news. My AFP tumor marker count was 7, which is in normal range (yay!). My CT scan was clear (yay!). And Dr. Hallum couldn't feel any abdominal abnormalities (yay!). I'll likely be on blood thinner through May (ugggh).

The long of it: I went to see my oncologist today, for the first time in almost 2 months. It was the first time I went by myself, ever. Walking in with so very much energy in my body and the knowledge that I'd dive right back into my busy life tomorrow felt weird. But as a healthy person, seeing the doctors and nurses and staff who took such good care of me when I was ill was a joyful experience.

Medically, the news is as good as can be reasonably expected. That is, it's unilaterally positive except I can't eat greens until long after the good greens season is done in Tucson.

I had to go to the infusion room for a port flush (to keep my port-a-cath happy it has to be accessed and flushed with saline and blood thinner once every month or so), and of course I would have gone there anyway to visit my nurse Shirley. Walking into the chemo room was a wave of emotion for me, but soon enough I was sitting in a recliner, swapping stories about female parts gone awry, and demonstrating my favorite headscarf tying method to the first-timer next to me. While I didn't see them, I learned that my favorite chemo buddies are doing well.

And I go back next month. And the month after that. And the month after that. Grazelda is one fast-growing cookie, so we're keeping close tabs on her ashes for the first while, but for now she does seem to be thoroughly gone.

Grazelda's Favorite Hits Part III: Regrets

2010-01-11T22:25:00.000-07:00

I've been trying to make a list of Top 10 Regrets from cancer. Beyond very particular instances with very particular people (for instance, I would have liked to have gone hiking with my mother), there's not all that much that I regret. So, instead it's a Top 3 list.

3. I wish I would have kept on top of correspondence better. Hmm. I suppose this is true for my non-cancerous life as well - it's a constant (joyful) struggle. In any case, I am still blessed with many people to write to, and I will continue to work on that project.

2. I wish I would have given myself permission to cry a little more. Despite my Bartel disposition to weeping, I worked hard to keep the tears in check when there were other people around (obviously, there were some exceptions when I was totally and utterly overwhelmed at the beginning). When I look back, I think some more crying would have been in order. Like in the doctor's office when I was first told I needed chemo. Logically, the oncologist's is a perfectly normal place to experience and express some emotion. Yes, I could have cried more.

1. I wish I would have gotten a blue wig. Heck, my insurance covers one "cranial prosthesis" per year. While I knew I didn't want to pretend I had hair while really I was bald, a bright blue wig would not be pretending - it would be awesome. I'd be looked at as "Wow, that woman has blue hair!" instead of "Oh, that poor girl has cancer." Not getting a blue (or maybe pink or purple or green) wig is definitely my number one regret.

P.S. With clever use of a headscarf, I fooled several more people in church on Sunday into thinking I had orange, sparkly hair. Yes, it was from afar, and yes, it was only for a few seconds, but these are people who have known me with hair. (Un)fortunately it's growing back in its typically mundane and beautiful shade of brown: No evidence of orange and sparkly, or even curly for that matter!

Grazelda's Favorite Hits - Part II: Soundtrack

2010-01-10T22:01:00.000-07:00

You should listen to this while reading this post:

I received a number of CDs during my convalescence, both mix CDs and full albums. I have enjoyed each one in their own way, but here are the top 10 songs that have become the soundtrack to my stint with cancer and chemotherapy.

1. The Re-Arranger by Mates of State
"I know it's impossible. / But you should try to shake it off."

2. Come Thou Fount of Every Blessing by Brothers Frantzich
"Seal it for thy quarts above . . ."

3. When It Don't Come Easy by Patty Griffin
"But if you break down / I'll drive out and find you"

4. Missed the Boat by Modest Mouse
"And we carried it all so well"

5. Hard Times by eastmountainsouth
"'. . . tis a song, a sigh of the weary . . ."

6. So Strong by Freedom School Soundtrack
"Something inside so strong . . ."

7. Summerstone by House of Doc
"And we got this song"

8. How You Survived the War by The Weepies
"I think you can choose to love and what is more / That is how you survived the war"

9. Innocent by Our Lady Peace
"While she wishes she was a dancer / and that she'd never heard of cancer"

10. Rain Before the Fall by House of Doc
"the patches that remain are the memories I made / and all the good we've done"

Special mention goes to my friend Hannah. Half of these songs are off the mix she made, including my hands-down favorite cancer song of the season, Innocent by Our Lady Peace, which is what you've been listening to if you followed directions. That CD still makes me cry often enough that I have deemed it dangerous to listen to while driving and have removed it from my car.

Three Thoughts About Hair (Not Baldness)

2010-01-08T21:09:00.002-07:00

The Hedgehog Theorem

There's an old proverb called the Hedgehog Theorem stating that every head of hair must have at least one whorl. So while I theoretically knew that the very short little vectors on my head would be mathematically non-differentiable at some point, the evidence on my head of burgeoning hair is currently much more obvious.

The Importance of Sideburns
I still wear a headscarf most of the time to retain heat, but I feel like my slowly-returning sideburns throw people off the chemo scent. Or maybe I have stopped radiating the "I just had cancer and am still a little fragile" vibe. In any case, it's been a while since a stranger, usually a client at work, has asked.

Going Pooless
Not only is this crop of keratin special for reasons of feminine vanity and survival symbolism, it's also an experiment. I have become aware of a movement within the blogosphere (and so-called real world) towards going "poo-free." The idea is that, given the chance and proper care, my scalp can produce the proper amount of oil to keep my hair beautiful without the aid/impedence of shampoo. The problem is the transition period when hair/scalp that is accustomed to shampoo suddenly finds itself without that daily/bi-weekly detergent and has not yet adjusted. But if you start with no hair, there's no hair to be greasy and gross for weeks on end. Well, that's my theory. Strangely, I haven't read about anyone who started the method by shaving it all off. At any rate, sometime in late October when I was still essentially bald, I quit using shampoo on my scalp, which I had been doing for the fruity fragrence and fun of it. We'll see what happens.
[More info on the method here, although what lack of shampoo has to do with being a faithful young Christian woman I have yet to discern!]

Medical Update:
I biked to and from work on Monday and Thursday - spectacular sunrises and raging endorphins make it a pleasure. I haven't had a noticeable hot flash in over a week - it gets a little cold without them! And I don't have a nasty taste in my mouth - that's been gone a month, but it's still really nice. Friends have told me I'm back to myself again, but I think it's mostly the return of the eyebrows.
I have a blood test this coming Monday and see my oncologist on Wednesday about the results from that and from the CT scan. While it may seem odd, I'm really looking forward to seeing them again.

Happy New Year!

2010-01-01T15:17:00.001-07:00

I'm looking forward to 2010, but like everyone else today I am also looking back at 2009.

A number of people have expressed their wish that my new year will be "better" than the one past. Yes, I would prefer not to have to take any more chemotherapy next year (or ever). Yes, I don't want to need any more major surgery, abdominal CT scans, or 3am hospital runs. Yes, I would like some better luck. Those are not things I would ever choose.

But 2009 was amazing; the year was intense, surprising, emotional, and revelatory. And now at the end of it, I find I love my life even more than before. I love my self, my body, my family, my friends, and the community here in Tucson and across the world more wholly than I did this time last year. For me, 2009 was full of the goodness of people. Memories of the physical agony fade quickly, but those of kindness - simple, creative, big, and small remain vivid. Perhaps I should get a job at Hallmark because these sanguine cliches are how I've been feeling lately.

So, Happy New Year to you and to yours. May it be full of good health, interesting people, and compassion in word and deed.

Medical Update: I feel great. I had a scheduled CT scan on Monday (routine post-chemo baseline) and will get the results later this month. The barium I had to drink before the scan tasted like water. It was delicious. Why did I have to drink the nasty baby lotion the first time?!
Also. While my hair is not yeat thick and luscious, I no longer qualify as bald. A picture is forthcoming.
And I biked to work yesterday. [insert your favorite Victorious Noise Of Strength here]

Cancer and . . . Christmas

2009-12-24T19:16:00.000-07:00

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

2009-12-17T08:17:00.000-07:00

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

2009-12-13T22:07:00.002-07:00

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

2009-12-06T21:03:00.001-07:00

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

2009-11-29T15:26:00.000-07:00

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

2009-11-21T14:32:00.000-07:00

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 . . .

2009-11-18T22:36:00.001-07:00

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 !!!!

2009-11-18T08:24:00.000-07:00

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!!

2009-11-17T21:30:00.000-07:00

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

2009-11-16T23:08:00.000-07:00

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

2009-11-14T00:18:00.001-07:00

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

2009-11-13T00:30:00.000-07:00

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

2009-11-11T21:43:00.000-07:00

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 . . .

2009-11-10T22:33:00.000-07:00

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

2009-11-09T22:57:00.000-07:00

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

2009-11-09T00:45:00.000-07:00

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.

2009-11-06T18:14:00.002-07:00

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

2009-11-04T21:40:00.004-07:00

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?

2009-11-03T23:50:00.000-07:00

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

2009-11-02T22:06:00.003-07:00

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

2009-11-01T21:29:00.000-07:00

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?

2009-10-31T14:39:00.000-07:00

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

2009-10-28T23:08:00.000-07:00

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

2009-10-28T22:43:00.000-07:00

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

2009-10-26T21:42:00.000-07:00

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

2009-10-25T21:43:00.000-07:00

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!

2009-10-25T21:42:00.000-07:00

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

2009-10-22T20:07:00.001-07:00

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

2009-10-21T21:24:00.000-07:00

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

2009-10-20T20:56:00.000-07:00

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

2009-10-19T22:15:00.002-07:00

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

2009-10-18T19:48:00.005-07:00

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

2009-10-16T21:43:00.006-07:00

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

2009-10-15T21:13:00.003-07:00

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

2009-10-14T21:54:00.004-07:00

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

2009-10-13T20:57:00.008-07:00

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

2009-10-12T21:33:00.002-07:00

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

2009-10-11T22:34:00.005-07:00

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,
mp

True Confessions of a Cancer Patient

2009-10-10T15:37:00.004-07:00

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.

Vegetable Korma

2009-10-08T21:10:00.004-07:00

It was a very leisurely sort of day here. My friend Rachel is visiting from St. Louis, so we did a lot of hanging out, enjoying the phenomenal weather that is October in Tucson, as well as some cooking of vegetable korma. It was creamy and delicious, exactly what I was craving.

Sometimes I worry that I might run out of Profound Insights On Cancer, or at least hit some periods lacking in Medical Novelty, and I wonder what I would write about when that time comes. It seems there is a de facto rule against people on the chemo drip writing food blogs: with the slightly altered state of my tastebuds, posting recipes would be a bad idea (way too much salt, etc.), and my chemo comrades could be nauseated just by reading affectionate accounts of double-decker-chicken-tomato-goat-cheese pizza (I didn't know such a thing was legal till I ate one).

But, I am hugely grateful that my senses of taste and smell (and my high-power meds) allow me to ingest adequate nutrition without nausea and even enjoy it much of the time. Being a Penner, and a Bartel Woman, food is pretty central to my well-being and so, lacking more directly cancer-related material (such as accordions and toenail clippings) it would be my tendency to write about whatever awesome lasagna or fajitas or blackbean dish was for supper. So if I start writing mostly about what's for dinner - and I'll try not to - take it as a good sign. I'm feeling well, eating well, and in good spirits.

Blood Test Results: Still too thick.
Note to self: Study harder.

High in Tucson tomorrow: 84.
Note to self: Go hiking.

Weekend Plan: Pumpkin Soup in its own Shell.
Note to self: Yum.

The Bonus Bleo Report

2009-10-07T19:38:00.003-07:00

Bonus Bleomycin Wednesday 3.2 went off without a hitch. I was brave and took the stick without the numbing spray that was starting to irritate my skin. I dripped so fast, my nurse Shirley (who reads this sometimes because she's that awesome!) had to suck the air back out of my lines. And I got to take the surgical superglue off my port incision, so it looks like a very small scar now instead of a scary Frankenstein badge; It will protrude like a very misplaced anklebone until they take it out or I gain 30 pounds, but it's not that obvious if you're not looking for it. I was home by 11:30 and hung out and ate lunch and rested without incident. My friend Jeanne took me, and I really enjoy showing people my friends at the chemo room.

The downer was that my friend Liz, who's 80-something and also has ovarian cancer came in today, too. I was happy to see her, but she hasn't been doing as well and now has to come in every week for chemo, which is a change in her regimen because her tumor markers had gone up instead of down. Stupid cancer.

In all the excitement about the accordion, I failed to mention the very sweet collection of cards I received this week from the kids' Sunday school class at Shalom in Tucson. I guess I'm doubly impressed because I didn't really believe in cards till I was 15 or so, but now-a-days they really keep me going. Thanks for thinking of me, guys!!!

Cancer and . . . Accordion!!!

2009-10-06T22:24:00.003-07:00

This morning, at 7:30 a.m. a friend of mine knocked on my door with a very special delivery: An Atlas 12-Bass. I just about did a jig I was so excited! In fact, I was late for work because I got distracted trying it out.

Okay, so maybe I should back up:
1. Accordions are awesome.
2. I have a little bit of time these days for sitting around feeling somewhere between icky and moderate, craving distraction.
3. When you have cancer, people - friends, and even strangers - do really nice things for you. (other cancer perks are few and far between. Like not flossing.)

Add those things up, and my friend Jennifer arranged for the Accordion Club of Tucson to lend me a beginner's instrument (very small so that my chemo-laden arms don't tire unnecessarily) and simple instruction booklet. All this, just in exchange for giving a recital at one of their meetings!! I've been giddy about it all day. I don't know that I have words to express my pleasure in the folky harmonies coming from the bellows . . .

So for now, I'll say a big THANK YOU (and even link) to the good people at Accordion Club of Tucson for granting me this wish. All that's left now is to practice.

P.S. I feel great right now and have all day (with the exception of the start of my first mouth sore - oh no!), but tomorrow is Bonus Bleomycin Wednesday. At least it should be quick.

the Monday After

2009-10-05T19:09:00.003-07:00

Today, the Monday after a Bad Week is the turn-around day, the day I can usually stop thinking "ugggh, this sucks," and start thinking, "hmmm, maybe I'll be a 'normal' independent young adult again someday . . . I should fix my bike." I've learned when to expect the crud to retreat, and have become better at naming, describing, joking, and making utterly pathetic noises about it, all of which helps, but doesn't change the fact that the crud still really sucks. And so today I am, again, very happy to be feeling pretty durn chipper. Hooray!

As a sign of my eventually being able to return to my normal life, this morning on my very own two feet, I walked to my blood test. And then home again. Let me reframe that: I went to a medical appointment, without consuming fossil fuel. This is amazingly refreshing to me, as Life Before Cancer for Margaret was also Life Without A Car. I love biking, walking, and generally not driving wherever it is I have to go. Obviously I understand the merits and dazzling convenience of automotive transportation; no fear, I won't be biking the 24 miles to chemo and back anytime soon, nor will this turn into some didactic Greenpeace Hippie Blog. But today going somewhere meaningful, without getting in the car, made me feel that much healthier and on the road to wellness.

Also: Tucson is officially gorgeous right now, which means that invalids like me can venture out-of-doors without risk of heatstroke. So this evening, I walked another couple miles to the library and back.

What I really like: limeades.
What doesn't really spark my interest: chocolate

P.S. re: previous post. Yes, everything came out okay.

Lazy Sunday

2009-10-04T21:43:00.004-07:00

It was a slow-moving kind of Sunday here. I stayed in bed for a while, lazed around with my sister, read some, talked on the phone some . .

Okay, I'm just gonna come out and say it, because I've been concentrating on it so hard for the past 3 days: I can't poo, and it really sucks. Constipation is a common side effect of chemotherapy, and even one I've grown to expect at this point in my cycle. But this time around is worse. I've sat and done my yoga-to-loosen-stools (even some improvised Hunker Down Asana), I've eaten prunes and prune juice, drunk my fluids, gone on long walks to get things going, taken three different, progressively potent moving agents with regularity (har! har!), and still, it's a slow-moving kind of Sunday.

Other than that I've decided that my lymph nodes have been sore. I haven't heard anything to indicate that this is a "real" side effect, but it's been a consistent experience for me at the end of my 5-day week: When I touch anywhere on my upper body with any sort of pressure, it hurts, like I'm bruised all over. The worst of it is in my neck and armpits, and my throat hurts to swallow, like I'm getting strep (but I'm not). It's getting better, and should be totally gone in a couple days, but it's the sort of thing that makes it hurt to get dressed or roll over. It's the sort of thing that makes me think, "Oh, this is what it must feel like to have cancer." And if I only have to feel like I have cancer for 5 days out of a 3-week cycle, I'll take it.

Well, I have a blood test tomorrow morning for my PTINR, so I'd better go and study.

Because he is AWESOME!

2009-10-03T08:15:00.003-07:00

This gem appeared for my end o' the week Happy Basket Present. It was enough to make my Friday, despite the yucky chemo funk. So I think I'll just leave y'all with a picture.

Can I get an AMEN?!

Yoga & Prunes

2009-10-01T19:10:00.003-07:00

On the upside #1: I had a milkshake for breakfast. My sister made orange julius with frozen banana and yes, ICE CREAM. It was absolutely delicious and I felt no remorse.

On the upside #2: I can tolerate prunes.

Disclaimer: To avoid depressing blog posts, just don't read anything after Thursdays of Bad Weeks (that would include the rest of today's).

The thing that sucks about chemotherapy, well, besides the hair loss, the fatigue, the change in your taste buds, the heartburn, the nausea, the bloating, the flue-like symptoms, the way it suppresses your immune system, and all manner of unmentionables (see Title for antidotes for Today's Pseudo-Secret Side Effect!) . . . the thing that sucks about chemotherapy is that the worst part doesn't usually happen when you're "hooked up" in the office. It's not like a challenging bike ride where you push and push and push and get home and can lay down on the couch and relax, drink a cold one and maybe deal with a few sore muscles. Or a rough day at work, when you can leave whatever irritating colleagues or clients behind and at least have a possibility to not think about them for the next 16 hours.

Nope, the thing that sucks about chemo is that it sticks with you, all day, even days later, and you just have to lay there and take it. It doesn't feel like a fight or a battle or a competition of any kind. It's just something to get through, just wait for your bags of clear liquid poison to drip in, in the good faith that ultimately it is kicking out the bad and at the end of the next cycle (or the next one if my numbers aren't down enough), I'll be cured (enough) (for now) (with a (good enough) chance that it won't come back). That's what sucks about chemo.

T-Shirt Turban Lessons

2009-09-30T19:39:00.003-07:00

Chemo chemo chemo. Ugh.

It went well today - I went in early to see the doctor and get a blood draw before my big drip trip. Good news all around: He was pleased with my tumor marker count from last week (27) and how my port is healing, and my PTINR is back to "perfect," which means my blood is as thin as they want it. Chemo was pretty blah except the very last part when the same woman as yesterday sat down by me.

Yesterday she'd been admiring one of my favorite headcoverings, a light, soft purple cloth I wrap into a turban, but despaired that she would ever be able to wrap something that complicated. I told her I'd show -nay give (it's too small for my big bald head anyway) - her the easy T-Shirt Turban that honestly looks pretty similar but is very simple to wrap. So, today I brought it with me, and we had headwrap lessons there in the chemo room. She seemed pleased, and I was happy to be useful.

I got a good nap this afternoon, in the middle of my Glampire reading, and while still not super-hungry in the evenings, fajitas brought by some kind friends were delicious. Allison and I went on a mini-walk to get our pseudo-exercise, and now we're watching Cinderella. I'm retaining lots of fluid, and it doesn't feel good, but when that's the worst of it, it's a good day for a Wednesday.

Musical Week

2009-09-29T19:54:00.002-07:00

This week for low-impact evening entertainment, and to get my nose out of Glampire novels, if only for a brief time, Allison and I have declared Musical Week:
Saturday: The Producers
Sunday (the Day of our Lord) we rested, of course
Monday: Silk Stockings (1950s Fred Astaire flick)
Tuesday: Godspell
There's more on the docket, enough for the rest of the week, checked out from our phenomenal local video store, Casa Video.

Chemo wiped me out again today, and I didn't feel a whole lot like eating supper - not sick or anything, just not hungry. But Allison made this delicious sausage lasagna (see rampant sausage craving from Salt of the Earth post) and honeydew, so it wasn't exactly hard to eat either.

I'm getting my chemo pudge on again, and the uncomfortable breathing that comes along with it, but not too much else happening. And my port still rocks.

Bloodsuckers!

2009-09-28T17:47:00.002-07:00

I had a pretty good day in the chemo room. I'm a huge fan of my port. Shirley just sprayed me with some liquid nitrogen plus numbing agent, and I didn't even feel when the needle went in. It took all of 3 minutes to get hooked up. There was no positional discomfort, no looking at my arm, wondering if it's beginning to start burning just a little bit, and I could use both of my hands, happily knit away, and feel obviously justified in asking the woman next to me about the sweater she was crocheting. And they say the first time is the worst time!

She also had to do a blood draw, which generally can be done through my port, but if it's for my blood thickness it has to be done from a fresh stick. [Pause in writing while Margaret's Coumadin alarm goes off - how appropriate! - and she downs her rat poison] My blood's too thick again, having gotten all messed up when I went off it for surgery last Friday, so of course this is the blood test I have to have most often. But a poke for a blood draw is soooo much easier than starting a good IV.

Chemo still knocks the snot out of me. Well, it's only Monday, so it's just starting to dribble out (strictly in a figurative sense. I'm not allowed to get colds while on chemo, and congestion is one of the few bodily dysfunctions that's not a common side effect for any of the drugs I'm on), but again it strikes me as bizarre to sit in a comfy, reclining chair, knitting or reading or snoozing for 5 hours, and have my limbs feel shaky and tired and weak when I get up. This week is not going to be too fun.

So, I come home, and go straight to bed for my afternoon rest. But do I sleep? No (incidentally, neither do vampires, ever). The problem is not insomnia or crazy thoughts. Instead, I'm addicted to teenage vampire romance novels in the form of the Twilight series by Stephanie Meyer. It's not something I'm proud of, but it has made a too-perfect distraction the past couple weeks and keeps me from sleeping when I all-too-often give into temptation to read when I lay down for a nap or for night. At least I'm resting! It also fills my mind with thoughts about vampires - the friendly, beautiful, sparkly-in-the-sun variety my friend Meghan calls "Glam"-pires. It's a bizarre situation, as I have to think about my own blood in real life and the people who suck it out of my veins (don't worry, Shirley is a very human, highly skilled infusion nurse, most definitely not a vampire) on a very regular basis. I promise this won't turn into a blog about Twilight; I started the last book today, so my obsession will conclude shortly. But I thought I should confess whence my thoughts have been straying recently.

Salt of the Earth

2009-09-26T14:02:00.007-07:00

Clue #1: The Weird Mouth Taste
My mouth doesn't taste normal when it's just hanging out doing nothing. It's not a really bad taste, not even really metallic, as people often describe happening during chemo, but it's not a good taste either. So I've taken drinking more limeade, water, sucking on mints, lemon drops, etc.

Clue #2: Cheese
Colby Jack, after holding a special delicious place in my heart for the past year, seems to have lost its zing.

Clue #3: Sausage
I've been having a severe and persistent sausage craving that I mostly haven't been giving into.

Clue #4: Chicken Soup
Allison made me a simple chicken soup yesterday, that being what I felt like I should be eating after surgery. I was pretty excited about it, as "store broth" is a sodium-laden guilty pleasure of mine. The first bite was disappointingly bland, but I figured she must have splurged on the healthy, low-salt, happy chicken broth. So I added my own salt (it took a lot, and it still wasn't as satisfying as usual).

Clue #5: Tortilla Chips
I was eating tortilla chips with my sister today - Restaurant Style, Full-Fat, Full-Salt, the kind that make your mouth a little tingly. And I realized that they really didn't taste salty to me. My lips felt like they were salty. Allison told me they were salty. But they just weren't salty to me.

Conclusion: my salty tastebuds are mostly dead. Yet another one of those irritating things about having cancer/chemo that's not lifechanging, not dramatic, but, well, it leaves an unpleasant taste in your mouth. And I try not to dwell on the flavor, because thinking about it makes it worse, and while all the cancer books encourage you to indulge your every dietary craving when your tastes change, I try not to be too spoiled rotten about it.

Tonight we're making spring rolls in hopes that aminos in the dipping sauce will simulate salty (well, technically umame) enough to satisfy my cravings. Plus, I have a thing for spring rolls.

I would also note that I have still been able to enjoy food a lot. I almost always have an appetite, and most things taste pretty much like they should. I guess just a little less salty.

Generally, I'm feeling well today. A little like someone punched me in the shoulder where my new port is - sore, achy, not wanting to move my arm much - but when that's the worst of it, it's a good day.

Seven Sugary Thoughts

2009-09-25T18:41:00.006-07:00

My port's in! I now have a bump under my skin on the right side of my chest about the shape of a Mentos, and just a little bit bigger. The hospital run went well this morning. Some observations:

1) While the hospital gown was the least flattering I've worn, it had this brilliant feature of a special full frontal pouch with vacuum-like hook-up that they blew warm air into to keep me comfy while waiting for surgery and while in recovery. It's like having my own personal floor register. Someone should market pajama-bed systems like this.

2) They didn't put me all the way out, so while I did take a chemical-induced nap during part of the procedure, I remember when we got into the operating room being asked what kind of music I like. The doctors and nurses proceeded to rock out to some bluegrass tunes while getting me all ready.

3) Waking up from not-being-all-the-way-out was a lot easier and faster than from general anesthesia. I was able to carry on continuous, lucid conversation with my recovery room nurse (who, it turns out, plays fiddle), feed myself ice chips, and argue with my sister about directions on the way home (we were both right, but she might have been a little bit more right).

4) Getting ready for surgery, everyone looks a little bit alien, in sea green "pajamas," face masks - and hair coverings! For once, I was in the majority with my covered head, and my pink hat was rivaled in cuteness only by my surgeon's U of A print surgical cap.

5) I took a number of very long naps when I got home, but I've been up for almost 5 consecutive hours now, and I feel fine - my arm and chest are just a little achy.

6) No bandaids, no stitches. How did they close me up this time? Superglue!

7) Here's a picture. If you're easily grossed out, don't look, but I don't think it's that bad.

Chemo should be a breeze next week with my new port! Oh wait, it's just getting the chemo into me that will be easier. Everything else (tired ick, stomach ick, intestinal ick, fluid retention, etc. etc. etc.) will be just as crummy/challenging. I still have half of this treatment left to go, but I will be getting poked a lot less.

Worry

2009-09-24T22:28:00.002-07:00

Here's the question I wish I'd thought of before 10:30 the night before I go in for surgery: I'm having this port installed because they can't get good IVs started in my one accessible arm anymore. They have to knock me out at least partways to put the port in. Don't they need to start a good IV to do that?

This is also a weird surgery because thus far in my life I've only had surgeries to remove offending body parts (wisdom teeth, Grazelda). This time they're going to put something in and leave it there until I have another sugary surgery to remove it. And all the pictures I've been shown of the exact kind of port I'm getting (a Power Port) show it as purple - they're going to put a piece of purple plastic in my chest!

Sugary's at 7:30 am tomorrow (well, Friday) west coast time, so we have to be at the hospital super-early. I should go to bed.

Graphs and Ckraphts

2009-09-23T20:02:00.007-07:00

*This post is perhaps a little more "special interest" in nature. As always, feel free to ignore content that doesn't appeal to your brand of special.*

Here's the visual representation of yesterday's update, because I know at least some of you were thinking it:

[Thanks to AP for the graphic, and to krf for the extra encouragement]

And here's the project I'd been meaning to do for more than a month now, ever since my aunt sent me this great piece of silk to dye into the headscarf I always wanted.
An art-teacher friend here lent me her silk-painting kit, and this past weekend the weather and my energy and schedule aligned. My sister served as an excellent silk-painting caddy, handing me paints and dispersing salt as needed, and we produced this fine result:

And here it is on my head:

Tomorrow promises to be full: I'm teaching CHRPA school on wiring outlets, going swimming, eating pizza, and going to book club.
3 weeks after chemo my life starts to feel a little bit like normal... and then I have surgery on Friday.

P.S. Typing the word SURGERY always makes me think of SUGARY.

27

2009-09-22T17:24:00.002-07:00

is my latest AFP (tumor marker) count, which is down from 301 last time (3 weeks ago), 1700 before I started chemo, and 6000 before surgery. Goal: 6 or under. Grazelda is getting gone. Huzzah!

Bonus Super Feel-Good Week

2009-09-21T15:38:00.004-07:00

I went in for Therapy 3.1 today, the first day of my 3rd cycle, the first day of the icky 5-day week. And they couldn't get a good IV in my right arm (my left arm, with its thrombophlebitis and general clotted-ness, is verboten). One of them got started, and got in enough benedryl to give me a nice mid-morning snooze, but that one blew, too, before I finished my pre-meds. There are all kinds of reasons - I have small veins that have gone through a lot the past few months, some of the good spots are scarring from the harsh drugs, other spots are bruising, and they're just frail. After 4 pokes, my nurse calls the doctor and they recommend installing a port, which is a little plastic thing that is surgically implanted beneath my skin, below my collar bone with a line going almost all the way to my heart. There aren't too many options, I need to be able to have a reliable IV, and with my "hypercoagulative tendencies" (I clot easily), they don't want to try another PICC line.

A Portacath: The first ever picture on this blog that is not of me!
(But don't worry, I'll probably make you look at a picture of it protruding from my chest on Saturday)

I didn't get any chemo today, and I won't get any chemo all week, not even on Wednesday - so this is like Bonus Super Feel-Good Week, like Intermission exactly halfway through my 12 weeks. I'll probably do more Feel-Good things like go into work, maybe more hiking, and ckraphts! And then I have outpatient surgery on Friday to insert the port (performed by my favorite surgeon, Dr. Hank Hallum himself). Well, it's outpatient unless my lung accidentally gets punctured, which is a minuscule possibility, but I mention it because I've been beating the odds in so many ways lately. Fortunately that depends on my surgeon, whom I trust, rather than my body, which has been doing some unfortunate things.

Oh yeah, and I'm off my Coumadin and back onto self-injecting heparin-based blood thinners so that my blood can be the proper thickness (PTINR=1.0) when I get cut open. So then a week from today I start my 3rd cycle. This pushes everything back a week and means I won't be done by Halloween. It also means that, since I won't have an IV in my arm during chemo, I may be able to knit while the poison drips in. How could they forget to list this as a Port Access Advantage in the brochure??

Well, friends, there you have it: yet another plot twist in Margaret's Medical Drama. Not a huge one, and you must admit there was ample foreshadowing in the past 6 weeks, but I'm still astounded that this very straightforward chemo plan has experienced complication after complication after complication. Frankly, I figured my bad luck should have just about run out by now!

Looking ahead: there has been some Ckraphting going on in Margaret's Casita and I can promise pictures of a new headscarf, fresh from being pressed.

The Perils of Feeling Good

2009-09-19T08:24:00.003-07:00

The Event in the past few days was a lovely overnight at a friend's cabin in the mountains. For those of you not in Tucson, the Mountains are extremely important during summer (which lasts from March to November), in order to escape not only the concrete city bustle, but also the brutal heat. I spent the first 4 hours in the mountains napping in a hammock. That's right: four glorious hours of sleep in the afternoon, followed by a full ten-hour night. I guess I'd been falling behind on my rest, but in any case it felt amazing, and gave me lots of energy for taking walks in the pine trees by the streams.

Yesterday, it happened. I wouldn't say I forgot that I have cancer, nor that I have to go in for the dreaded 5-day chemo week next week. But between the refreshment of being up in the mountains, the excitement of having a friend in town, and the general busy-ness of the day spent feeling great, I did forget that I was supposed to go into the lab for a blood draw. I realized this at 5:15, 45 minutes after the lab closed on Friday afternoon. And this isn't just the blood draw to make sure my blood thinner levels are good, this is also the 3-vial draw to check my blood cell counts and my kidney functions that they need to ensure I'm healthy enough to be kicked in the bum again with the chemo.
So I worried about it a little bit, eventually found that I could go in on Saturday (today), and convinced myself that it would be okay. I felt guilty enough, but I went in this morning and got my blood drawn unceremoniously.

My sister comes in today, hopefully to take the edge off next week's treatment, or at least bring me 7Up when I need it and make sure I get to my blood draws in time.

Happy Thursday

2009-09-17T07:42:00.002-07:00

This week my friend and old college roommate Meghan is here. I am so pleased to see her, and even more pleased to feel good enough to do things, even after a Bonus Bleomycin Wednesday, which took 2 pokes and less than 2 hours. All my side effects have cleared up for now - even my BMs have been proper without pharmaceutical encouragement! - except my superficial thrombophlebitis (the little blood clot in my forearm), but even that is less swollen and tender than it was 3 days ago. Oh yeah, and I guess I'm still bald, but who cares?! So last night I went swimming for the first time since Grazelda took up residence, and today we're going up to the mountains for a little gentle hiking and a little just being in the cooler weather in the pine trees.

Here's what I can tell you: it feels really good to feel good.

September is Ovarian Cancer Awareness Month

2009-09-14T20:43:00.004-07:00

I was wondering what I could do on my blog to observe this (besides shouting,

"HEY! I HAVE OVARIAN CANCER!!!"

in really large, bold, teal italics, of course). I hope that this blog is doing something to increase awareness, but I realize that I haven't provided a whole lot of general information about ovarian cancer in these tomes. It's a little bit complicated by the fact "my" type of ovarian cancer (malignant endodermal sinus tumor, which is a kind of germ cell tumor) is not very common amongst ovarian cancers, so the information I have given has been somewhat Grazelda-Specific.

Ultimately, this is what I would like every woman to know:
The 4 Primary Symptoms of Ovarian Cancer:

Bloating (gaining girth without gaining weight elsewhere)
Pelvic or Abdominal pain
Difficulty eating or feeling full quickly
Urinary urgency or frequency

I had all of the above (plus fever, cough, diarrhea. Yeah, it was miserable). If you have any of these for more than 2 weeks, don't freak out - it could be something else - but do talk to your doctor. Ovarian cancer is typically hard to diagnose because the symptoms are often so subtle and can also be indicative of other conditions such as irritable bowel syndrome (and pregnancy - you have no idea how many doctors thought I was pregnant!!), so knowing the symptoms and seeking help immediately is that much more important.

The Other Thing I Have To Say, Which Also Applies To Men
(not that the men should ignore the previous, since each of you cares for many women)
Two months ago to the day (unless you're on the west coast and so totally addicted to my blog that you're reading this mere minutes after I post, bless you) I woke up with severe abdominal pain. Before that, not only did I feel amazingly healthy, I was leading an unquestionably healthy lifestyle: I ate the right stuff, I got my exercise, I've never smoked, I drink alcohol in moderation, I even gave up coffee after one bad caffeine trip last year. There is not a lot of cancer in my family. I was 24 years old. And then, bam, I got cancer. That is to say, you could get cancer. Just for a minute, let go of the list of lifestyle choices you've been making to minimize your risk factors (because I did all that and more), and let that thought sink in. There's your existential pondering for the day.

Now, make sure you have health insurance, and keep doing what you can to prevent it!

If you want more information, www.ovariancancerawareness.org is very accessible and well-organized, while www.ovarian.org goes a little more in depth.

P.S. Said simply, I feel great today.

My Big Bad Bald Self

2009-09-13T15:20:00.003-07:00

Today in the shower, maybe even while I was washing my scalp (ironically with Wonder Waves shampoo), I had the following thought:
"How am I going to do my hair today?"
And then I remembered that right now, that is not a concern of mine. So I threw on my rainbow-tie-dyed-with-sparkles scarf and went out.

No, I haven't gone out in public without a headcovering yet, but why would I when I have so many great scarf options?! However, it is becoming more and more probable that I really may forget one day, and I don't think it would be so bad. I have been increasingly happy and comfortable as a mostly-bald woman. I happen to think I have a nice-looking head. Which is fortunate, as I suffer from an inability to not look at myself in the mirror (narcissism exposed!).

I haven't lost my eyebrows or eyelashes, and I still have a little bit of hair by my sideburns, which is what makes a woman look really bald, even with a hat on. In fact, they sell little self-adhesive sideburns for wearing under hats or scarves.

Anyways, here I am:

And just for comparison . . .

(This picture is really for my Dad's brothers, proving my status as Baldest Member of the Penner Family)

Superficial Thrombophlebitis

2009-09-12T14:19:00.004-07:00

. . . looks like this:

That thing that is circled in blue ink pen on my forearm is a blood clot (thrombosis) that either migrated or grew backwards from my PICC line clot. When you have a blood clot, it just sits there in your veins (that's the -phleb- part). Blocking blood flow can cause pain and swelling, and it can even get inflamed (-itis).

For the past few weeks I've had this spot on my arm where I can feel a very well-defined vein. My doctor said that it was a blood clot and nothing to worry about. I'm already on drugs to take take care of my Hypercoagulating tendencies, and my arm is a great (=relatively safe) place for a clot to hang out. But yesterday I woke up and it was worse. It hurt (a little) to straighten my arm. It was (a little) redder, and (a little) visibly swollen. So after some re-arranging of schedules to get my Dad to the airport and me to the doctor's simultaneously (Thank you Scott and Jeanne!!) I had the quickest doctor visit yet: He drew the dotted line around it and told me to call if it got a lot bigger or redder or more swollen, and I'd go on antibiotics just to make sure it doesn't get infected.

In the middle of his explanation, to make sure I was following him, Dr. Hallum asked me to recall why I was prone to blood clots, "Because I have cancer!" was my prompt, and correct, answer. It felt a little bit like I was in Sunday School or children's story, where "Jesus!" is always the right answer, or at least is never wrong: All these random side effects and symptoms are because of cancer or chemo (which is because of cancer). Otherwise, underneath all of that, I'm healthy!

And probably going contra dancing tonight!

Cutting My Toenails

2009-09-10T22:17:00.003-07:00

So. I haven't written in two days. Not that I haven't been virtually prowling around this place. I must confess to a sort of narcissistic attachment to my own writing, but I usually confine my obsessive re-reading to my journal. There just hasn't been too much excitement to report. I mean, my stomach was a little upset yesterday, but I did feed it an In-N-Out burger, fries, and a shake for lunch after chemo. So here's a list of all the Normal People Kinds of Things I've been doing the past couple days. Because when you Have Cancer, people seem to get excited when you do Normal People Kinds of Things.

Went to the grocery store
Made a smoothie (as in, I made it myself, not had someone make it for me)
Went to work
Spent a bunch of time fawning over my new iPod
Talked to a few friends I haven't seen in a while on the phone
Cut my toenails
Went out to lunch with my Dad
Dried the dishes
Worked on my finances
Folded an origami elephant

While this makes for a pretty mundane post, it points to a much happier circumstance, which is that my body is feeling well enough to allow me to concentrate on other things. Like cutting my toenails.

Cheers!

wups

2009-09-08T21:09:00.003-07:00

Today I'm feeling pretty good. Yesterday I felt pretty good. I could complain (and I still might complain) about how chemo has turned my hitherto iron-clad digestive system into a needy, sensitive, and irritable part of me. But that's mostly all that feels wrong.

Today's medical news is that my PTINR=1.0 Essentially that means that my blood is too thick now, pointing to Friday's reading of "ridiculously too thin" being false, probably due to it being drawn through my IV. Wups. So I'm back up on my Coumadin doses and will test again on Friday.

As expected, my doctor called me today to give me this news, and it made me think again, as I have several times in the past week, how much I really like my doctors. One would imagine that after a person performs major surgery on you, hands you a cancer diagnosis, and a 3-month chemo regimen to get through (all in the first week of knowing him), that you'd have some negative associations with this person, at least a little bit of dread or fear of seeing them. But I find it's basically opposite. Between excellent communication, being very available, competent, optimistic, friendly, and compassionate, when my doctor walks into the room I smile and usually feel just a little bit better. I don't know that I could ask for better people to steer me through this than Dr. Hank Hallum and Dr. Jennifer Hallum. And my nurses Shirley and Kerry are the same: The good part about the 5-day weeks is that I get to see them for a few hours every day. If you ever have gynecological cancer in Tucson, these are the folks to look up.

Tomorrow is Bonus Bleomycin Wednesday! I'm hoping for a good IV and no nausea.

Happy Birthday To Me!

2009-09-06T13:57:00.005-07:00

Remember when you turned, oh, say 5 years old, and your birthday felt like the absolute biggest thing that happened that century? You probably had a party with your little friends in dress-up clothes and cupcakes with candles. Party games. Lots of presents. And a birthday card from just about everyone you knew?
Well, I don't think anyone dressed up, and I didn't have a party per se, but I turned 25 today with about as much good cheer, well wishes, and simple astonished wonder at how very very much I'm loved as I had when I turned 5. (and yes, there was a cupcake with candle)

The day started off with the usual sleeping in followed by Egg and Toast (Margaret's new absolutely favorite breakfast) and resting in between bouts of feeling mediocre. All this changed in the afternoon when my parents returned from picking up my mail at my apartment. I'd picked it up on Wednesday, so despite my roommate's warnings I wasn't expecting the armload they poured on me.
It was almost too much - like I wasn't sure I should be allowed to open it all at one time, but since it was my birthday, I just sat down and had myself a party opening card after card after card and even a few packages. It was so very wonderful to read your words and think of each person and how special each is to me. Cancer sucks, and chemo is pretty nasty, too. There's no changing that. But I am unspeakably grateful to be told in such a concrete way and know, for sure, that I'm not alone and that I am very, very, very loved. Thank you. Now, before I slip into cliches or weeping, I'll leave you with a picture.

Me, warming up and checking my email in my Cow Blanket and my Big Bald Head after a Birthday Smoothie.

Brought to You By The Letter K

2009-09-05T17:58:00.004-07:00

Today I am very tired, my throat hurts, my body aches, and while I know I need to drink lots of fluids, finding fluids that don't taste gross is becoming a challenge.

Here's the good news: no nausea.

Here's the bleary health update from Grazelda-Ville (which might be too medical for some tastes. Feel free to ignore!):

Yesterday I went in for therapy feeling "punk-ish," as is to be expected on day 5. My rapid weight-gain had led me to have some weirdness by breathing. There's no problem with fluid around my lungs or anything; I guess when your body changes shape so quickly things just shift a little. But the kind folks at chemo really do their best to make life as comfortable as possible (and while it's hard to not feel sarcastic typing this, sitting here feeling awful, it really is true that they are very kind and do everything in their power to make the yuck bearable), and as the breathing thing was hurting a little when I lay down, they gave me some extra diuretics in my IV and sent me home with a prescription for more, and advice to bump up my nutritional potassium intake as much as I could. Well, I shed enough weight (and bulk - I can see my wrists, ankles, etc.) overnight to make me comfy enough without the extra help loosing fluids, but I'm still cranking up the potassium and the fluids to give my kidneys a break.

Meanwhile, yesterday, in the midst of investigating my breathing, since I still have those 7 or so blood clots hanging out in my lungs, they ran a test to check my blood thin-ness and it came back not just slightly too thin, but way out in ridiculously too thin land (PTINR=4.1 if that means anything to you). So, I'm off of my blood thinner for a couple days, have stopped shaving my legs (ha!), and go back for labs on Tuesday. And what this means for my Vitamin K intake? Well, all sources say the important thing is to stay consistent, so I'm still laying low on the green & leafy.

train wreck

2009-09-03T18:06:00.002-07:00

I got an email from my boss today that reminded me of one of my less-obvious rights to frustration, which I will now proceed to complain about publicly. Now, largely because of company history, because Community Home Repair was started by and still has a strong volunteer force of retired church folks in Tucson for the winter, we only work 4 days a week. Yes, for the past three years of my life, I have been luxuriating in the most wonderful equation that Thursday=Friday. Well, this is not so in chemo-land. My "bad" weeks are literally Monday through Friday, a full five days of sitting in the chair, waiting for my fluids, my VP-16, my Cisplatin (and on Bonus Bleomycin days, that too) to drip into my arm and poison my cells, coming home to a nap, and whatever else I can eek out of my dwindling energy levels. In other words, I feel awful today, Thursday, and I have to go back for more tomorrow, even though it really feels like time for the weekend. ugh.

And yes, Allison, even those with head hair are welcome to wear Wise Womyn T-Shirt Turbans (and any other headwraps). I'll show you how to make one when you come.

There Were Shepherds, Abiding in the Fields

2009-09-02T20:13:00.006-07:00

So, here's an American Cancer Society-recommended easy turban made from the bottom portion of a T-shirt (thanks, Jen!). Mom and I are trying to figure out whether it looks more like a shepherd or a wiseman. Thoughts?

I haven't been feeling too peachy today, suffering from some stubborn stools, if you'd really like to know. Since everything's connected, that brings on some low-level nausea, and with all the fluids I'm once again +10 pounds since Monday (when else can a woman just proclaim that with no shame whatsoever attached?!). I did get in a really quality Post-Chemo nap. My new sleep-inducing trick: Lake Wobegon podcasts. Also, Mom got me a blender today, so hopefully delicious milkshakes are soon to follow. And supper by friends is so so lovely, as it was again today. Thanks to all involved in that endeavor.

Two more days of chemo this week - and keep sending those positive vibes for this great IV to hold!

Therapy 2.2

2009-09-01T18:20:00.003-07:00

Well, I woke up from my Post-Chemo Nap to my Blood-Thinner Alarm, and I'm still tired. Today was a busy day in the chemo room, my regular seats were taken, and I ended up for most of the time between two older women, one of whom I'd seen several times before. Liz was her name, and she comes in fairly frequently just for IV hydration. We had a long-ish conversation about international travels and how nice it is to get cards when you have cancer. The woman on my other side was on her first day of chemo who also had ovarian cancer (of a different sort) and she had some questions about loosing her eyelashes (mine seem to be firmly rooted, along with my eyebrows) and just general stuff. It was kind of crazy to feel like an "experienced" person, but I guess once your hair falls out, people assume you know something about life.

Speaking of hair loss, my big breakthrough this weekend was figuring out how to fold bandanna-sized scarves to that they cover my whole big bald head. This essentially triples my head-covering options, allowing me to wear great funky scarves such as the above (Thanks, Stacey!!), which went over well in the chemo room. And maybe someday I'll post a picture of something besides me . . .

Today's health report is that my IV worked well, and they left it in another day, so here's hoping it works tomorrow again, too. I also found out that the steroids I'm on make it hard to go to sleep, which explains my late-to-bed experiences of late. Fortunately I've still been able to get ample sleep, and have my indigestion almost entirely controlled.

Therapy 2.1

2009-08-31T19:44:00.004-07:00

Today was the first day of Round 2, starting with 5 days straight of chemo. In other words, "the hard week." Monday's chemo is done. 2 pokes today - the first IV had a weird problem and gave me pain. Because my veins are so small, and not very accessible and only usable in my right arm (so as not to disturb my clotted left), my nurse Shirley left the second one in and is hoping to use it again tomorrow. This also means I have one of those stylish fishnets on my elbow tonight, which I think goes with my super-cute (what Allison calls my "street urchin") hat. I got to put another sticker on the front of my binder (my visual count of chemo sessions), and got to open another present from my Happy Basket. And when I got home all I wanted to do was take a nap. It's still amazing to me that I can sit in a chair all day (it was a 9-3 kinda day again), doing almost nothing, and come home feeling so wiped out - although today was not a hit-by-a-freight-train feeling, more like hit-by-a-compact-car. I would so much rather be exhausted from climbing ladders in the Tucson summer.

So, tonight's hope is for a good sleep and that my IV is usable tomorrow.

Gone Dancing, or Social Side Effects of Cancer Part II

2009-08-30T09:44:00.003-07:00

I did it: Yesterday evening, despite some pain near my incision, I went out to the local contra dance (if you don't know what a contra dance is, follow the link, watch the video, and then go find one near where you live to try it out). As my hair is now all between 0" and 1/8" short, depending on the patch, I wore a headscarf, and along with the Best Contra Dancing Dress Ever, I didn't totally have the "cancer patient look." I arrived late, left early, and sat one out, but I did dance.

Now, I've been contra dancing in Tucson enough over the past three years that the regulars know me. They've noticed I've been gone several months (the first of those several months had nothing at all to do with Grazelda), but this is a group I don't have much email correspondence or other contact with. So there they were - a bunch of people who know who I am and mostly haven't heard I have cancer. To add to the awkwardness, my encounters with each were mostly limited to the 8-16 counts of a swing or an alamand right. And when you have less than 20 seconds to chat, the proper response to "Good to see you! How have you been?" is definitely not, "I got cancer. How are you?" Needless to say, I lied a lot, or at least made a lot of gross understatements.

Why did I avoid telling people? Yes, partly because there just wasn't time during dances, but there were times in between when it could have been appropriate. Partly I didn't want to draw attention to myself because these people were gathered and hanging out with me (and each other), not because I have needs, but because we all wanted to dance. In fact, they wanted to dance with me, not because of the crummy things my body is going through right now, but because of one of the things my body does best: dancing.
I also didn't tell people to avoid putting them in an awkward situation. If I came out to them as a person with cancer, currently going through chemo, they'd have to feel sorry for me and express sympathy and wonder more about my hair and worry about my energy levels and be delicate with me on the dance floor. Ugh.

There was one man, though, as we were waiting for the dance to start who looked at my head scarf and asked point blank, "Is that a fashion statement or chemo?"
[Now, before you suffer outrage at this question, you should know that this man is also my standing waltz partner, the one person I usually spend the 3-5 minutes of the first waltz at each dance with. I know a little more about his life and he a little more about mine than your average "trail buddy," and he's familiar enough that his tendency for, um, straightforwardness does not surprise me.]
Back to the story. I wish I would have responded boldly, "I don't do fashion statements." But I didn't. I was grateful for the question, maybe a little shaken that my condition was so obvious, when here I'd thought I was blending in so well, and I told the truth straight up. He said he was sorry and asked about my prognosis and how long I'd be in chemo. Then it was time to dance. And it wasn't awkward.

In any case, it was good to be out, good to be dancing, and now I'm dealing with the possibility of sore muscles from that adventure. I'll take sore muscles over nausea, fatigue, and bone pain any day!

The Hours In Between

2009-08-28T19:28:00.003-07:00

Today I took my sister, who has been staying with me for the past week, to the airport. I will miss her, but she is coming back in a few weeks. Now, I really don't want to give the wrong impression here, so let me say this first and say it loudly: I am tremendously grateful for family and friends so committed to being here in Tucson with me and for them to be able to do so. That time I woke up in the middle of the night almost fainting makes me somewhat afraid to spend the night on my own, and who wouldn't want someone to cook and clean and most importantly just be with while I have all manner of crap going on in my body and the corresponding thoughts running through my head?! I also consider myself amazingly fortunate to have family with whom I love hanging out, a lot, for a very long time. None of this post is about being tired of being around the people who have been here.
But, today after I dropped my sister off at the airport, I had about three hours before a friend who was driving in from Kansas arrived. Three hours in which I was alone and no one else knew or was thinking about where I was. For a free-spirited twenty-something like myself, this is a normal state, and it's not normal for me anymore. I guess this is just one of those Social Side Effects of Cancer.

"So, Margaret," you ask, "what did you do with your hours alone?"
And I'm not going to tell you!

I'm feeling pretty good today, maybe a little tired. I have this dream of going contra dancing tomorrow night. I'll let you know if that goes. And my mom comes back tomorrow!!

Thursday

2009-08-27T20:36:00.003-07:00

Today I am grateful for:

*going all yesterday evening and last night without any stomach problems
*being able to work 3 days this week
*possibly the best pizza my sister ever made
*naps
*Skype

I'm getting tired of shedding, though getting more disciplined about not pulling it out by handfuls. Tomorrow morning I think I'll get out the clippers. Honestly, I'm not sure that I have the guts to promise a picture of bald Margaret. We shall see.

Cocktails, Caps, and Blood Counts

2009-08-26T20:41:00.003-07:00

Today at chemo, Shirley mixed my anti-nausea cocktail better than they did in the hospital, and I took my Ativan when I got home - hey did you know that Michael Jackson was on Ativan too?! it's not what made him die, but it was one of many things he was on - so after a brief rest, I felt well enough to go run some errands.

I've been meaning to go to the American Cancer Society for some time because I'd heard they have a resource room of wigs, hats, and scarves. While my collection is nearing the versatility I desire, I wanted to see what was available and any advice they had. (Like is there a way to get all your hair to fall out at once so it doesn't go all patchy? As the Hungarians would say, sajnos nem). Today we stopped in, and it's still surreal for me to go into a place like that to receive services. I've been living with this diagnosis almost a month now and "the C-word" still hasn't sunk in, as it applies to me. Going often to therapy and sitting in a row of people with IVs in various stages of baldness helps me to feel like I'm part of an "us" rather than talking about a "them," but Cancer Survivor still hasn't entirely integrated into my identity. The people at ACS were really very kind, wanting to see if there were other services they could offer, and they found me a couple hats and another scarf that may even surpass the cuteness of the ones in the previous post. I think I'll wait to post pics, but just know that you don't have to worry about me being bald and cold and un-cute.

That is to say, not only am I feeling well tonight, I'm also feeling a little bit hip. AND I got my blood work back from Monday and my AFP count (which we want to be low . . . like 6. before surgery it was 6620, before round 1 of chemo it was 1786) was 301. Score 1485 points against Grazelda!

Headcoverings

2009-08-25T18:03:00.011-07:00

A few days ago I noticed that I could pull out the little hairs on my legs painlessly. Just today it got really easy to do this to my head:

I guess it's just a matter of days till it's all gone and I have to deal with being bald. I thought about going with a wig, and even tried some on . . .

But really, if you know me well, you know I've had a "thing" for headcoverings for a long time, so I think that headscarves and hats will serve me well enough. I've been collecting and currently have an entire drawer devoted to scarves of various sizes and fabrics. Here are some favorites:

This one is from a fellow (less closeted) headcovering enthusiast at church.

One of my Mom's silk scarves from China.

My aunt made this one (and I have a dress to match!). It also models my current favorite way to tie a scarf, but it takes a 36" square piece of cloth.

This is my only hat, knit just for me by a guy in my sewing circle. His daughters picked out the fabulously (and soft) pink yarn, and I look forward to wearing this when I don't feel like having a bun at the back of my neck.

Tomorrow is Bonus Bleomycin Wednesday, so I'm hoping for a good IV, and the right kind of drugs to keep the nausea beast at bay.

How Margaret Got a Prayer Shawl

2009-08-24T20:01:00.007-07:00

The Mennonite community I'm part of here in Tucson is Shalom Mennonite Fellowship. It's a small, vibrant, spunky group that does a lot of good work and has a lot of fun together, too, often times on Sunday mornings. Shalom of Tucson has a sister church, Teusaquillo, in Bogota, Columbia, with whom we exchange visits at least yearly and stay in communication through the relationships that have developed. When I first started attending Shalom I was impressed with the importance placed on this international relationship between churches, something I'd only read about in theory. We light a candle for our sisters and brothers in Bogota every Sunday, and every Sunday they light one for us.

While I haven't been to Columbia myself, a couple years ago a woman from Teusaquillo named Adaia volunteered a day with Community Home Repair during her visit to Tucson, and was sent out with me. We fumbled through the language barrier to do some electrical jobs together, but I hadn't been in touch with her since. This summer, a family from Shalom was in Bogota visiting when I discovered Grazelda, and they shared the news with the friends that had gathered with for supper. Adaia was among these, and immediately offered to pray for me at the monthly healing service that was to be held that week.

So it came about that yesterday, feeling well enough to go to church, I was anointed with oil and presented with a prayer shawl, originally belonging to Adaia, that had been prayed over by the fifty-some people at the healing service in Bogota as well as the people at Shalom.

While Shalom is unaccustomed to anointings (or maybe it's just me - I had to be told explicitly, "Sit on the box!"), the healing ministry is what comes naturally to our sister church. And regardless of your thoughts and experiences of the "God Paradigm" (thanks, Myron), it is a powerful thing to be so cared for by an entire community I've never met, except one day of electrical work. I am awed and grateful to be connected to so many people, from whom I'm usually separated by geography, culture, and language. And we are all hoping for healing.

Oh yeah, and I'm feeling so good today I went to work. No carrying shingles up the ladder, but I drove myself around and sat in the office working on writing grants. Week three (in the chemo cycle) is a good week.

Moving Me (not my blood clots)

2009-08-22T13:37:00.003-07:00

Moving Days
I mentioned earlier that moving was also on my plate for this week. It has happened. In fact, it's the bulk of what's happened in the past few days. Being sick humbles you in a lot of ways - going to the store in slow-walking-often-resting-using-the-cart-for-support mode, being dependent on having someone stay with you most of the time, and now having all of my earthly possessions gone through, packed, moved, and unpacked by others while I literally sit in an easy chair. My initial plan was to move to a duplex I'd leased with a relatively new friend, but found myself led to accept an offer to stay this first while in a casita belonging to a family from church. Thus, the past two days have found me watching other people first move all of my stuff to the duplex, where the furniture and furnishings would stay, then go through and re-pack the things to come with me to the casita, move them, and unpack them into place. I feel like this blog space could easily become a long long list of people I'm grateful for (which would include everyone reading this), but today a special thank you to Matt, Scott, Alene, Jeanne, and Mary Beth for all of their sweat and wisdom, and to Erik, Leanne, Josh, and Allyson for the willing loan of their beautiful casita.

The Report from the Health Department
I remember having a thought, probably Monday of this past week (before I ended up at the hospital), that went something like this: "Man, I guess this blog will get kind of dull just describing my health . . . tired, nauseated, tired, nauseated, feeling better, lather rinse repeat. I guess I'll have to start coming up with Deep Reflections On Having Cancer to keep people entertained." I wish that were the case (though if I'm struck with any Deep Reflections, I promise to share). Here's the report on Margaret's bodily functions:

Thursday I felt well all day. I didn't even nap. Right after supper, I started getting this weird pain in my side, on the left, towards the back, like by my rib cage. Like muscle spasms almost, that was sort of correlated with my breathing. It started as discomfort, but grew to around a 6 on the 0-being-no-pain-10-being-the-worst-pain scale. Not only did it hurt really bad, but it was kind of by my lungs, you know, the ones with the pulmonary embolisms. I was worried, so I called my oncologist and, while waiting for him to call me back (it being after hours), almost decided to leave for the ER anyway. But the doctor was totally confident it wasn't dangerous. "You're on chemotherapy," he said, "You're going to be uncomfortable," and told me to take drugs. So I did, and after a while my pain grew less, and by laying in a certain position I could eventually almost make it go away. It still hasn't entirely, and there's only one way for me to lay down, but I'm no longer worried about it.

Sleeping at night has also gotten to be a problem, as night seems to be when my nausea comes on more forcefully. Thursday I woke up a number of times to go to the bathroom and take various meds to soothe my stomach, but last night I slept really poorly, with a severely distressed tummy that did not seem responsive to the usual drugs. I was able to nap some this morning, and have been feeling fairly well today, a low-level nausea that allows me to be hungry and to eat.

As always, here's hoping.

Back Issue 1: From Thursday Morning

2009-08-22T13:27:00.003-07:00

I’m out of the hospital. After a great morning in the hospital yesterday, felt perky and energetic, even while getting my bleomycin (chemo drug) and the most delicious hospital meal I’ve had – a turkey-bacon wrap – my stomach started to feel bad. I guess I’m still learning what it means for me to feel nauseated because that is not how I would have described the feeling, and yet, a few minutes later, up came lunch! So I was really miserable for a few hours – they gave me some more drugs that didn’t help, and some that did, and eventually decided I was fit to go home. I’m still getting blood drawn almost every day so we can get it to a point of being thin enough from the Coumadin, the oral blood thinner I take.

That is something to look forward to because for now I get an injection of a substance called Lovenox twice a day. “LOW-vuh-nocks” is how it’s pronounced, so it made me laugh when I finally saw it written down (on my takehome Lovenox Box) because to me it looks like “Love Knocks,” some highly ethical dating service. Do not be fooled. It’s an injection, a shot I have to give myself in the stomach twice a day, and it hurts, even for a while after it's over.
Okay, so actually I feel a little bit powerful to be able to do that – and even to adjust my own dosage, but it still takes a substantial amount of courage each time to plunge the needle into my own flesh.

Being in crisis mode, which I guess I qualify under right now, has some other difficulties that come along with it.

My dear dear friend and housemate Jodi moved to Canada today. Well, it will take her a few days to arrive, but she left from our house in Calle Herculo this morning. There are other shocking things involved with this process, such as coming home from the hospital to all my belongings and wall hangings and clothing, neatly packed by some helpful friends and stacked on the back porch. Jodi’s stuff was all packed into her car, giving the house a much more hollow look. I knew this was happening, but a suddenly naked room is always startle.

And it’s at times like these that I wish I could just stop having cancer for a day, or totally switch it off for just a few hours, and spend a last few moments as just housemates, friends thinking back over our years of adventures and revelations and projects together. Last night I was feeling well enough that this could happen in spurts. But the default channels in my mind concern either my bodily functions or hospital staff and it’s hard to feel like a normal person with normal things to talk about that come easily.

I suspect that as my treatment continues I will have more and more occasions to feel these ways. But today I’m looking forward to my longest break so far – 6 days without any chemo drugs – and my sister coming tomorrow, the possibility of a quilting project, getting started in a new house, and the prospect of having some energy for that.

back online

2009-08-21T19:55:00.003-07:00

Hi. I'm back. It's felt like a very long time since I posted last, especially since so much has happened. I don't mean to cause concern. Besides being busy, I haven't had internet for the past 48 hours, but now I'm mostly settled into a new place, not the hospital, with internet (more explanation to come). I've been writing all along, and I will post these as sort of back issues, and hopefully sometime tomorrow I'll catch up to the present. But for now, I'm mostly well and very happy about the following things:

my sister arriving in Tucson as I type this.
a delicious dinner brought by friends.
being settled into a (gorgeous) casita of tremendously gracious friends.
having been successfully moved by hard-working friends, twice in the past two days.
my blood reaching its thinness goal this afternoon, so I don't get a shot in the stomach tonight.

Moving on . . . (unfortunately)

2009-08-18T17:12:00.003-07:00

Well, the good news is . . . they have wireless in the hospital. The bad news is that I'm using it, which means that yes, I am in sitting in a stylish hospital gown, writing this update to you. It's been a bit of a road getting here.

This morning at 3 am I woke up sort of. I managed to sit up but felt really, really, really off. Very weak. Lightheaded maybe? I called for help and my roommate Jodi woke up and came in and sat with me, turned on the light, woke up my dad. I couldn't see anything (they said my eyes were wide open), and don't really remember until I started to come to. My vision was all funky, my ears were ringing. It was pretty much superscary for everyone involved. And so we set off for the ER. (By the way, 3am is the absolute best weather Tucson has to offer in August).

They checked me in and checked me out all over - my blood pressure was really low, my pulse was weird. They did an EKG (I still have the sticky tabs on my legs), put me on some fluid IV for hydration. They did a CAT scan of my head to make sure I was alright in the head, and one of my abdomen and pelvis (both okay) and one of my chest. There it was. I have a Pulmonary Embolism, a blood clot in my lung. So, yesterday's blood clot moved on out of my arm and stuck in my lung. I think I heard I have 4 in one side and 3 in the other, but that could be something totally different.

So the present time has me in a hospital bed in a cardiac unit, much to the surprise of the nurses, who are not used to having 24-year-olds in their wing. My nurse was so pleased that I could "do things for myself," when I pushed my own "backrest up" button on my bed, so I could sit up. I'm also hooked up to a heart monitor with various sticky snaps on my torso. To this end I even get a special pocket on my hospital gown, and when I'm laying down, my heart monitor lies nestled in my bosom, just where Grazelda the Good used to sleep. I haven't named my friend the heart monitor yet, but am sorely tempted.

I'm feeling fairly well, and my oncologist stopped by a little earlier with a very optimistic perspective - very little chance of dying, this could almost surely have been managed outpatient, let's do the Bleomycin (chemo drug I was supposed to get today) while you're here with an IV anyway.

And at this hospital, the slipper socks have smiley faces on them!

Rejected

2009-08-17T21:28:00.004-07:00

Warning: this post may contain a sarcastic edge. But I have cancer, so I have those privileges, right?

Today was kind of a rough day medically speaking. I woke up, after a restless night, with what I think was ultimately just really really awful heartburn. My PICC line had been swelling and tender all weekend, which it was supposed to stop being around Friday, so we called into the office and the nurse set up for me to have a sonogram this afternoon to check it out. This was to be at the same place I had my CAT scan a few weeks ago, and sure enough, when I'm at my tired-est, down-est, least present-able, I get the same overly perky receptionist from last time. This is the woman who had assured me that the gag-inducing Barium was "not that bad" and that "it wasn't the contrast that made me have 20-trips-to-the-toilet-diarrhea; it was my body's reaction to the contrast." Today she wanted to know if I'd done anything fun lately. I held my tongue instead of saying, "Yes, why, just last time I was here I got diagnosed with ovarian cancer, had major surgery, and started chemotherapy. It's been a real hoot!" This is the only medical professional I've encountered whom I don't find at least pleasant - it's a good track record, but irritating to have to deal with her again.

Fortunately my tech was pleasant and sympathetic, and I got very close to falling asleep on the sonogram table (why do they dim the lights?). Unfortunately, they found I had a blood clot and sent me straight to my doctor's office to have the PICC line taken out - like a long train of spaghetti coming out of my arm - and put me on blood thinner, with a bugs bunny band-aid to boot. Unfortunately, this means I'm going to be on blood thinner for a while and now have to stop (or at least really moderate) my Vitamin K intake. Vitamin K is in things like, oh . . .

brussel sprouts, kale, green tea, asparagus, avocado, broccoli, cabbage, cauliflower, collard greens, liver, soybeans, certain beans, mustard greens, peas (black eyed, split, chick), turnip greens, parsley, green onions, spinach, and lettuce

. . . just those green leafy vegetables and everything that I usually eat. Huzzah for Coumadin!
Unfortunately (yes, this is sentence #3 beginning with that word), I will also have to have a lot more blood work done to regulate it. And, to get the chemo into my system, unfortunately (#4), for now it's back to poking me every day to start a new IV.

I had a long nap this afternoon and a pleasant evening - some friends brought over supper, somewhat miraculously free of Vitamin K - and now I need to go to bed so I can go in tomorrow. Happy Monday to all, I suppose.

In Praise of the Toast Train

2009-08-17T11:38:00.004-07:00

All things considered, I suppose one could call my weekend alright. (Sorry for not posting - it's a busy life having cancer AND being a blogger!) There were some Everyday Things that now startlingly count as Major Achievements for people as suddenly sick as myself, like going on a short shopping trip with my mother, and attending two larger gatherings of folks. Those really did brighten my weekend and give me something else to think about/do besides myself, but first I would like to highlight a couple Very Small Things that vastly improved my quality of life this weekend:

Very Small Thing #1: Crest Mouthwash, Alcohol-Free
Part of my new-found responsibilities include being exceedingly clean, to prevent infection while my white blood cell counts are down. This is hard for me. I'm having to get over my severe dislike for everything overly anti-bacterial. But when you're in the business of specialized cell poisoning, there isn't much choice. Especially vulnerable, I'm told, is my mouth and so I was given an oral hygiene regimen. Brush four times a day and then rinse with baking soda solution and then rinse with salt water solution. I thought this was great - I could mix up my own solutions in my little pint jars and swish when I was done. Nothing makes Margaret quite as happy as little pint jars, and I wouldn't even have to gargle! That worked for a few days, until the taste of salt water lingering was enough to make me need to spit several times afterwards and the thought of baking soda rinse, flavorless as it was, was enough to put a bad taste in my mouth and ruin any thought of food. Thus I am now a total fan and endorser of Crest Alcohol-Free Mouthwash because it puts me in a gag-free, pleasant taste space.

Very Small Thing #2: The Toast Train
Nausea is a big deal when you're in this sort of therapy. Everyone asks about it, they drug you before, during, and after to prevent it, and send you home with pills you can take 4 (literally!) different ways to suppress it. One hint I read in one of my cancer books was to prevent nausea first thing in the morning was to eat toast before getting up. This fits right into my routine, as my love of lightly buttered toast for breakfast is long, deep, and thorough. So yesterday morning, when I woke feeling a little bit "off" (this is becoming a constant state), I suggested that Mom bring me some toast in bed. Not only did she comply, but even cut the toast into the cutest little 2-bite-size pieces arranged around the plate, like her father used to do before meals. It's called a "train," and makes even the best of toast (and this was really good toast, thanks to some stellar bread by Kyle) that much better.

nauseated

2009-08-14T20:26:00.003-07:00

It's been another pretty hard day here - the not-so-gruesome gruesome details are that I woke up very early this morning feeling nauseated, and just having had a dream that my Mom had just spoken to the doctor and informed me that I should not take my anti-nausea meds, as it would interfere with my treatment this morning. This happened twice before I/my (real) mother convinced myself otherwise and I swallowed my pill.

Things were sleepy in all ways in the Therapy room today. Contrary to my dreams, they are (as always) very supportive of patients controlling nausea and other bad side effects before they start. I was told in no uncertain terms that I do not have an S on my chest and therefore should not act like Superwoman. I think I feel pretty far from Superwoman today. The official count has my weight up 13 pounds since Monday. It's all fluid and none that I'm worried about, but I feel like some bizarre inverse google ad: Gain 13 pounds in 4 days! My joints feel and look sort of like this, which is uncomfortable.

I'm really, really tired, and prone to random acts of sobbing, which is only to be expected, but irritating nonetheless.

Tomorrow, for the first time in a week, I won't go in for chemo (although I probably get to start Bonus Bleomyocin Tuesdays, even on my off weeks). Word is that the few days right after are just as difficult if not worse. And I won't be under the watchful eyes of Nurse Shirley and the very kind Dr.s Hallum.

And there are some bits of everyday life I have to make sure get taken care of . . . moving? buying a car? Fortunately there are lots of key people who make these things possible, so I can focus on the hard stuff, like breathing and sleeping.

A poem given to me by my friend Kristi, that feels far too apropos today.

Standing is Stupid
-Shel Silverstein

Standing is stupid,
Crawling's a curse,
Skipping is silly,
Walking is worse.
Hopping is hopeless,
Jumping a chore,
Sitting is senseless,
Leaning's a bore.
Running's ridiculous.
Jogging's insane--
Guess I'll go upstairs and
Lie down again.

ugh

2009-08-13T17:47:00.002-07:00

Well, I don't hurt. I'm not even sure I would describe my body as feeling nauseated. I just basically feel like shit - like so tired that the thought of doing anything, like even just calling people is a little overwhelming. This sucks. And I have to go do it again tomorrow.

See, I told you these wouldn't always be cheerful.

Love,
margaret