Waiting ...

This blog might become, temporarily, The Whining Chronicle of a Lucky Cancer Patient. Blessings and inconveniences abound.

But first things first ... the seafood risotto was amazing. Perfect. Might have to swear off restaurant food for a long while. Home cooking is just better. And I've concluded that P really only likes his own cooking. No matter, it's absolute comfort in all of this. I'm learning to deal with life only marginally in control. Strange thing to begin to let go of so much that's been so true for so long.

On March 2, just when it seemed to be going swimmingly and the end was just hours away, my white cells tested too low and we were unable to proceed as planned. We waited a week, they spiked back up (hooray for feisty marrow), and last Tuesday, March 9, was the last day with Agnes the Amazing Ambulatory Oncology Nurse and her drips. That night I celebrated with Kallari chocolate from the Ecuadorian Amazon, by way of Whole Foods in Austin, and sent by the delightful Julie, one of P's high school buddies. (It's the best chocolate I've ever tasted, and it's direct trade and sustainably grown to boot. Fabulous stuff. Find it. Now.)

This time, to avoid the steroid psychosis, we cut the post-chemo regime in half, and so far, five days since the treatment, nary a tear or paranoid / insecure / fearful thought. But this morning, for the first time, I was nauseated (the steroids kept it at bay). It's raining and chilly, and P is out of the house working this weekend. It's nice and quiet, perfect for laying low, sipping tea, waiting for my stomach to settle and the fog to lift.

This time, taste buds and olfactory glands have metal filters on them, fingers and feet are increasingly tingly (like "needles and pins" awaking), and I'm tired.

This time there's a new thing creeping in ... "chemo brain." It's apparently common for chemo to cause a loss in cognitive function as it accumulates in the system. Memory, multi-tasking, following instructions (even when written), language, etc. have all become problematic. I'm just dumb as mud. It's odd, frustrating, and hopefully temporary.

This time I know it's to be expected, it's not a surprise. All in all, still minor inconveniences.

Just one more blood test to check the CA125 scale and then we settle into something more normal. Dr A says that recovery time should match treatment time. So if we consider treatment time from January 4 to March 23 (the 9th + 2 weeks to hit the nadirs), then by June, give or take, I ought to be "me" again. Please God. P and I joked about a countdown calendar--advent style, Julia suggested chocolate and toys behind each tab--as a way to measure progress. Day-by-day seems too slow.

My hair has begun growing back--part of it at least. The white hairs are far more eager than the dark. The dark hairs are still just little stubblies, the whites are about 1/4 inch long and poking straight out. Very funny. But it's progress, small steps back to "me."

Last week, I visited the Chicago Botanic Garden and was mesmerized (again) ... the lakes were still frozen, twigs showed tender buds, and Canadian geese circled so low I could hear their wings thumping the air. I'd gone with the intention of a good long walk away from city noises, to check out the new Plant Science Center (so inspiring/engaging), and to learn about volunteer opportunities this spring. Next week, I meet the head of interpretation to talk about volunteering in the Culinary Gardens and Japanese Garden. And I'm plotting a vegetable container garden on the front porch (again). This time I know how the sun shines, the temperatures flow, and the rain falls. I'm looking forward to life with dirty fingernails and fresh produce.

And please keep Tracey, Marty and Jill in your thoughts. Marty, at 45, has stage 4 colon cancer. Just yesterday his oncologists ruled out myriad possible causes--genetics, lifestyle, eating, etc., etc., and attributed it to cosmic rays. No kidding.

Here's to it all. You're in my best thoughts.

[P's friend Julie wrote on FB this morning: "What if, when we're feeling lost and forsaken, we really open our eyes, with courage and with humility, and realize we're not only not falling, but that feeling, that open, that vulnerable, that free, that honest is forgiveness itself, like floating in a sea of new, the possibilities big as the universe, and that with intention, we can love and live there always?" ... and she loves socially responsible chocolate?!]

Such a whiner ...

OMG. What a self-indulgent rant that was ... Thanks to all for encouragement. I'm still counting blessings. Top among them is that, in my case and as far as we know now, this is an odd quirk in life's course rather than a long-term lifestyle. I have so much to be grateful for. And I am, really, grateful beyond measure, just afraid of hurting those I love.

My friends Tracey and Marty and Jill are fighting a different battle than I am ... please pray to whomever or whatever holds your truths, and wrap these gentle souls in your hearts. They are more courageous than I can say, and have long, long roads ahead of them. I love them dearly.

Please know that you carry my best thoughts. I hope you're all well.

33-and-a-third to go ...

Tuesday is, I hope, my last day of chemo. My head and heart are both quietly singing "Hallelujah," in all its varieties. Last week, my CA125 count measured 11 (lower than expected), but my white counts are still wobbly. If my white count is high enough (over 1500) Tuesday, I'll have four hours of the drips, four days of steroids and anti-nausea meds, then hopefully an all-clear for yoga and other activities. In time, my hair and good humor will return. I hope so. I miss them both. There's a meanness / paranoia / colossal insecurity / distraction that descends over me lately. I hate it. I'm embarassed by it. It's not like me to be so afraid. But I have been. Especially the days immediately following chemo ... and it lingers until the first days of the week following.

Until last week, I thought I was losing my mind, or, from deep inside in my paranoia / insecurity, I thought that P had lost love and moved on to loving job, others, anything instead, but its neither.

In all the talk about losing hair, losing my sense of taste and touch, hot and cold flashes, and possible weight gain, we never spoke of psychosis as a side-effect. During a visit with Dr A last week, I asked. "Oh, yes," she said. "It's called 'steroid psychosis.' Very common. And it's temporary. Don't worry ... " I don't have enough experience with steroids to know that they can make you crazy. Damned drugs: love them, hate them.

Back when we initially spoke about all of this, the doctors told me that tests had proven that three courses at three-week intervals are as good as six at three-week intervals ... easy, I thought. But last week Dr A explained a little more ... the reason it works is that it's the same dosage as six, just three doubles; i.e twice the pre-chemo steroids, twice the chemo dosage, twice the post-treatment steroids. Any of it enough to make a person crazy for a while; all combined feels perfectly horrid.

But at least now we know it's drug-induced and nothing permanent, just an altered "reality." Still, for now, I want P to lock me away for a couple of weeks, hide knives and other sharp objects, take nothing seriously, know in his heart that no matter how bitchy I am, I love him more than I'll even be able to say--or show. It's all a phase. I feel so bad for being such hard work. Really. Enough is enough.

When I suggested he might just want to be gone next week, P said "No travel. Let's cook. I don't want you to be crazy alone."

He's making seafood risotto tonight--shrimp, mussels, and clams. I might need a martini ... I wonder how alcohol and steroids work together?

Three weeks later ...

Well, funny how time flies when you're having fun ... Actually, I mean that with no sarcasm.

There have been weird days, sobbing, fearful, angry days, especially about three days after my last post when handfuls of hair fell out all over the place (I looked like a Chinese Crested dog), and then two days after that when I went in and had the tufts shaved. I had no idea how odd I'd feel bald, how conspicuous I'd feel wearing hats 24/7. I had no idea how cold wintery baldness would be (hats or not--but now that I've been bald for a couple of weeks, if it was summer, I think I'd be all over this--bald head and big earrings and sundresses). And I had no idea that when they said "your hair will fall out," in my case it meant everything but eyebrows and eyelashes--even the odd invisible hairs on the top of my feet are gone. I had no idea that the tufts of hair shaved off my head would start growing again right away, but that the hair that fell out would begin to grow much more slowly. I had no idea how this would change the way the world looks, how priorities would change ... I had no idea about my own odd vanities.

On February 9th I sat with my drips for round 2. The first week afterward, I was worried about the toxins bubbling around inside. The second week, less so. But really, I had no idea how "ok" most of this would be. So far, no nausea or other gastro-intestional adventures (many, many drugs...). No shaving my legs. No worries about bad hair days. And in spite of all the warnings, there have been only minimal changes in the way I taste things. I can't taste sweets well (ironic that among the kazillion things on the plate these days, I have to modify and taste-test 20 sweet recipes for work), but I'm enjoying everything else very much. My appetite waxes and wanes, but I had no idea how much I'd like weighing 15-20 lbs less than I did at Christmas. (Yesterday, finally, I broke down and bought a couple of pairs of size "smaller" jeans, the others were always slipping off. I'm approaching "smaller" as a temporary situation, though I'd like to make it permanent. Must work on that plan.)

P has begun traveling again and I've begun cooking. It's so satisfying ... First effort: yellowfin tuna rested overnight in coriander seeds and olive oil, then seared and served with brown rice and a chard/shallot/fennel saute. Tonight he's at the stove again, then he's gone for a week. My mother will be here--our food changes to accommodate, but we'll mix eating in with eating out during her visit. And next week ... back to working out, or maybe the week after, depending on the doctor's visit Friday.

If all goes well, final chemo on March 3. And then really back to food, beyond what's on the plate: it's time to dig into life in Chicago. Snow looms tonight, but spring is just a few weeks away and gardens will again bloom. I have volunteer appts at the Chicago Botanic Garden and Garfield Park Conservatory. We'll see ... Finger crossed.

Piece of cake ... or much ado about nothing (so far)

Well, we researched and planned and plotted and restocked the fridge and pantry with "safe" foods just in case, and so far, 12 days after the first chemo session, nothing has changed. Among all the possibilities--changes in the way I taste or smell food, numbness in my fingers and toes, overwhelming nausea, fatigue, and the whole hair thing--nothing has transpired. The nadir for it all is 15-21 days, so it's all still in the realm of possibility, but so far nothing. To date, chemo has been highly over-wrought.

The hardest part is remembering to eat just a little bit often and to drink enough water.

We are in the "no raw/no rare" stage of the cycle. Apparently, white cells are so low between days 10 and 14 that a body can't resist even the smallest threat from foodborne bugs. For the next few days, no salad, no raw fruit. Last night, P seared scallops, and served them with sauteed chard, leeks and red quinoa, and since he's just received a promotion, we celebrated first with our favorite martini (North Shore Classic Gin and Dolin Vermouth, with a jalapeno-stuffed olive), then with bubbly instead of wine at dinner. Nothing raw in any of it.

Today it's back to well-done everything, green tea and water. Tomorrow ... who knows?

After the first cocktail...

Well, dears, I decided to keep last week's posting up rather than delete it as initially planned. For now, the blog becomes an ad-hoc journal of the process, and food is still more prominent than I imagined. Nothing to be ashamed of in this, except delaying the visit to the doctor. We're women. We have ovaries. I should be through this by May, so if you prefer, duck out until then (when we'll be back to farmer's markets and seasonal produce and bright dreams for a sustainable food system). No hard feelings. I promise not to be too vivid, and hopefully we'll keep the Drama Queen under control. Be warned: the DQ makes no promises.

On Friday's visit with the surgeon (Dr Dolan, if you ever need to know), the zipper came out, everything stayed put, and we got a copy of the path report. We learned that the big lump was my left ovary (filled with all sorts of anomalies--and those pesky clear cells), and there were smaller non-cancerous fibroids tucked around other parts. The report also confirmed what I thought I heard Dr. D say: that everything, everything outside of the evil O tested negative for clear cells. It was isolated. (I was waking from drug-induced sleep when he told me about the first results on the report and part of me wondered if I was just making it up. Hallucinations can be so annoying.)

We scheduled chemo to begin yesterday. And we talked about what to expect when, and the does and don'ts.

Do eat, drink, stand on the scale and take a temp reading every day.
Do kiss, love, laugh, walk--and for me, write, every day.
Talk to friends.
Nap when you need to.
It's just hair, and it'll grow back.

(But be ready for ... well, let's describe those if/when they pop up.)

Thinking about Day 1 was far worse than its reality. We started with a good dose of Benadryl and Pepcid, then anti-nausea meds, then a 3-hour cycle of Plaxitaxel and another hour of Carboplatin. The Carboplatin ran cold into my arm, but that was really the only discomfort. I ate a burger and a banana, had a cup of coffee, chatted with the other drip people in the room. We came home and cooked.

Last week P's parents sent 50 lbs of frozen venison (sausage, ground meat, steaks) from Kerrville, TX. And over the weekend I made a big vat of vegetable broth (carrots, onions, celery, leeks, garlic, sweet and red potatoes, parsley, peppercorns, salt and bay leaves), and a chai base (coriander, cardamom, cinnamon, cloves) for sipping and comfort--and more importantly for the nutritional values just in case post-cocktail nausea was a problem. (The nurse said it might be; it hasn't been so far.)

Last night P made a venison ragu for himself and I indulged in liquids. They were heartening and filling and, as hoped, comforting, in the same way a good backrub can be. (And, I did have just a bit of his yumminess, too. It was, as is par for the course, good and garlicy with just an edge of spicy heat.)

Sometime in the middle of the night, I began working to visualize those cells, the cocktail isolating the little creeps, and killing them. I admit that clear cells are hard to imagine, all edge and shape--like shadow boxing. (I might have to find an image online to know what my mind's eye needs to find.)

And flowers just arrived from Sue, Leslie, Joyce and Di, one group of my Oregon hearts. Thank you. With love and light pouring in from so many, and blessings that scrape the sky, how can I possibly feel bad?

Here's to it all!

Living with big maybes and bigger blessings

Funny thing … all of this. Just when you think you’ve got it all settled, something else shows up. For give my indulgence here. I’m feeling mighty damned lucky these days. This post will just be up for a couple of days … Kitchen Counter Cultures has always been intended for stories—about food, and about other things that go along with it, most importantly, life.

I’ve been months’ away. First it was one thing, then another, and another. We’ve been eating well—since last report, we've added Takashi, Boka, Publican, Topolobampo, the Bristol to our "been there, ate that" list. But still, the most delicious of all is Phillip’s own cooking. We’ve eaten tender lamb racks and brined roasts, and shaved Brussels sprouts with thick bacon, stews, and pulled pork. Phillip’s making guinciale in one of the fridge’s produce bins. We seem to be on a pig thing.

Family and friends visited. We celebrated holidays and birthdays and survived--no, thrived--through a tough Christmas. (It’s life in a retail household. Each night’s conversation was/is punctuated by numbers and stats, by comps and forecasts. They’re way head of the curve, way ahead.) And there are more changes coming for him soon, professionally. I expected changes too, but, in that way you never really know, I’m surprised their manifestations.

Because cooking is Phillip’s personal meditation, passion and release, it’s become his domain. I rarely cook anymore (which I miss), but I do love eating it all. He works hard at healthy and simple cooking. And it’s nearly always extraordinary. We’ve been doing it right, leafy greens, lean meats, low fats, exercise, moderation (in all things but work), etc., etc. We are so healthy—normal weight, perfect cholesterol (mine at least—the man refuses to go to the doctor), low BP.

And now that I’m more "mature," when I felt the lump in my belly, I assumed that it was a fibroid—no big deal. There was no pain, no nothing, just a palpable lump. Mom has a history of fibroids, and there’s never been cancer anywhere in the family line—even the smokers died of something else—so, no big deal. (We were betting it would be filled with dog hair).

By the time I was able to get into the doc in late October, it was 10 cm (think softball), still no pain, but now visible. My internist freaked out and ultrasounds were inconclusive. Around Thanksgiving, I went to one gyne-oncologist who told me only that “we’re taking everything out,” and patted me on the head (which totally pissed me off). I got a second opinion. The second surgeon ran blood tests--the CA 125 was well within normal range—and we spoke about possibilities and options, but in the end, he still said “we need to know what this is,” so we scheduled surgery, and agreed only to take what was necessary, with a promise that there’d be a pathologist in the OR with us checking everything. Over the holidays my left side started hurting. Silly fur ball, I thought, no big deal.

On Jan 4, I went in for surgery; on Jan 8, the path reports came back and I got to come home. All went as expected, but they found some anomalies, too. The fur ball was a fibroid, and they found just a few isolated cancer cells in my left ovary (the CA 125 test). It's "clear cell, stage 1A," the very earliest stage. I don’t know if the fibroid and ovary are related issues or if I’m just damned lucky. (I have so much to learn about all of this.) “Furbie” and the cells are gone now, and as I understand it, by eliminating all possibilities for further growth, they eliminated a huge part of the future risk.

But there’s still this big “maybe”—there may be cells left. So we’re organizing the next few weeks around the possibility. Just to be sure, and just in case they missed a cell somewhere, I'll go through three rounds of chemo (it should just take a couple of months), and then we go on to next steps, which will hopefully just include regular check-ups.

It’s such an odd thing, this “maybe.” If not for the fur ball, God knows when we'd have found the rest. And is it like pregnancy, you either are or you’re not? I did have cells so did I have cancer? (Do I still?) Even with this minimal impact, almost just an inconvenience, I don’t know if I should be scared, or frustrated, or pinching the shit out of a lucky rabbit’s foot. Most of the time, I’m choosing the latter. Every so often, one of the others creeps in and just gives me a good poke.

If you’ve made it this far, please say a prayer to whom or what ever you pray to for Jill Costello and the millions of others with more identifiable cancers. It's so much more "common" than I ever imagined. Drop into Jill’s page at Caring Bridge (http://www.caringbridge.org/visit/jillcostello). Donate if you can. I’m amazed and inspired by the faith and courage that surrounds this. The kid, a friend of a friend, has such spirit and fight.

As we gear up for the next few weeks, we’re beginning with things we can control: food and exercise—more fruits and vegetables, more fish, yoga as soon as the zipper down my belly is removed on Friday (or, more honestly, as soon as the doc says it’s ok). Tonight, Phillip’s cooking tuna, seared simply on both sides, served with sauteed greens and red quinoa. I've set up camp on the couch, and it's snowing, there's a fire in the fireplace and the dog is curled in front of it all. Life goes on, doesn't it?

Take good care of yourselves, my dears. Here's to it all!