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).
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.
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.
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.
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!
RSVPif 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)
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.
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.
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.
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.
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.
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.
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!
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.
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.
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]
Grazelda was the accursed (and utterly doomed) ovarian cancer, a yolk sac tumor that I was diagnosed with in August 2009 - I was only 24! This is my chronicle of surgeries, chemo, and other fun cancer-y stuff, so people knew how I was doing and so I didn't go nutso.
