ben's smiles

This one reminds me of this one. They were just about the same age. (And was I really still doing late-night feedings on the couch with Daniel at that age? Ben has been sleeping through the night for a while now!)


Here's Ben with Megan, one of my closest friends from high school. She's in town this weekend. I think he likes her ... or he's turning into a ham in front of the camera, like his brother. (Maybe both!)

the other side of the magnifying glass

I'm used to being the storyteller — the reporter who sifts through material, interviews sources and compiles a concise article meant to sum up the life or dream or project of a complete stranger. I'm always gratified when the source of my endeavors comes to me later and says I captured the true spirit of the story. This time, I'm on the other side. A writer named Jodie Andrefski, who writes for a Web site called Story of My Life, contacted me after seeing a comment I'd left on another blog and asked if I'd be willing to let her write my story (the cancer part of it, that is). What's remarkable about the end result (read it here) is that all the material is taken from my blog. It's kind of amazing to think that chronicling our daily lives can generate such dramatic stories if it's tied together the right way. It was cool to read the article and see what quotations and details stood out for Jodie and what strands from my posts she chose to weave together. I think she did a nice job — she captured the spirit!

flowers for mama

magnificent

I went to acupunture this morning. I was in good spirits because my chemo session is finished, and I'm feeling OK, and — best of all — I'm completely unattached to any tubes and catheters. I'd been to acupunture before, when Steve and I were trying to have a baby; but that time, I went to a different practitioner across the street. The session was a gift from a friend, who sees the same acupunturist. I really liked this woman. We talked for a while about my cancer and how I'm doing, and then she told me where she thought she should put the needles this time — mostly in my arms, hands and shoulder.

So I lay down on the table, and she put the needles in — little yows and yips as they tweaked my chi but nothing more — and she told me to relax and breathe in the spring energy and fill my lungs with white light and breathe out all the grey yucky stuff. I tried to focus on that meditative breathing, although I allowed all manner of colors to fill the white — sherbet colors, greens and yellows mostly, swirling around inside the body of my imagination. I thought about my tumors and told one of them (the one near my spine that I can feel) that I wished it would just go away. It wasn't a hateful command, and I couldn't bring myself to curse it or feel anger at its evil. I just spoke to it as part of my body that's getting out of control, like a frustrated parent.

Then, out of nowhere, a voice in my head said, "Something magnificent is going to happen." And I was overwhelmed with emotion, and tears formed in my eyes.

That's all I can say. I left feeling good and positive, like someone reaching for the stars.

a team i could join

The Madwoman of Preserve Path, a fellow wordsmith, posted this article from the Chicago Tribune May 21 about two guys out to rid the world of bad punctuation and poor spelling. I love the photo alone!

Here's a snippet:

They entered a men's clothing store near Ashland Avenue. The large faded metal sign out front read "Mens Clothing." They swung open the door. An older man was resting his elbows on a shirt rack. They approached. Deck spoke. "We noticed your sign."

The man said nothing. Deck explained it needed an apostrophe. The man is Robert Marks, the manager. He is 60 years old and said he had been coming to this store (founded in 1914) since he was a child. (He said the sign is at least as old as he is.) He listened to them explain why the grammar on the sign was wrong. And then he shrugged, never changing his expression.

Deck asked if he had a ladder, so he could climb up and ...

"Don't worry about it," Marks said.

"We could jus ... "

"Leave it alone."

As I told the Madwoman, it just gets me that so many people in the world don't even notice punctuation errors, much less care. Either they don't read ... or they have no concept of grammatical rules in their heads. Either way, it's hard for me to fathom what it must be like to drift along through life with such a mind. If that makes me a snobby word nerd, that's OK.

musings

I've finally found some humor in the picture I've presented for the past six days, all hooked up to my tubes and black backpack: I look like a suicide bomber! With a cane. Ha ha! Are you laughing?

So tonight I get taken off one of my drugs, and tomorrow night I get off both of them, and then my arms will be freeeeee!!! And I can change into my own shirts, take a shower, a bath, wash my haaaaaiiirrr!!! I can scarcely wait. And I think they'll take the PICC line out, which means I can have that bath without wrapping my arm in Saran wrap!

I've finally managed to describe the sound my pumps make every minute or so. It's taken me a lot of mindless time just lying there listening to them as they keep me awake, so I might as well describe them here. They sound like the glide-click sound of an auto-focus camera lens trying to close in on its mark. gliiiide-click-glide-click.

I am so behind on thank-you notes. Seriously. We keep getting such cute gifts for Benjamin, some of them from people who don't know yet, and then I wonder if I should mention something about The Cancer in my thank-you note. And then there are all manner of amazing gifts to help ease our burden. A gorgeous set of sheets. A big container of soup. A check. Babysitting offers. A set of books. Wow ...

A few friends with whom I'm less in touch are just finding out. A few have contacted me in the past week. They are still bowled over by the shock and grief of the news, having the emotional reaction I had a month ago. I remember what that felt like, so I understand what they are feeling, but there's also a disconnect: It's not so immediate for me now, so raw. I'm in a different place now - a place of just getting by, trying to live my life day to day. So when I witness the initial reaction in others, I am unsure of how to handle it. I can't bring myself to meet it with equal emotion — too exhausting — yet I want to honor their feelings and allow the space for them. Sometimes I find myself apologizing: I'm sorry you are having to find out this way. I'm sorry we have been so out of touch. I'm sorry you somehow weren't on the big e-mail list I sent out. I'm sorry you slipped through the cracks. It's making me think a lot about my friendships and how behind I have been on so many of them.

two months old

Today is Ben's two-month birthday, and Daniel is 21 months and a day. Celebrate them both, I say!

chemo isn't very fun

There's nothing fabulous about it. Except maybe that I have a husband who's encouraging me to stay in bed all day and watch movies while he takes care of the boys. That's a fabulous husband.

Day 3. Or is it 4? My mind is completely spacey and I'm tired a lot. I have itchy rashes here and there on parts of my skin. I haven't had much nausea so far, but I've totally lost my appetite. Forget any special diet right now. I'll just eat what I can bear to eat, which today has been a pear, a bite of cheese, a few spoonfuls of applesauce and a little bit of leftover mac and cheese.

I have to carry the chemo drugs around with me, attached to pumps, in a black backpack. The cords sticking out of it are hooked up to the PICC line in my arm. One or the other of the pumps makes a sound every minute or so. Needless to say, what with the whole set-up, it's hard to forget that I'm on chemo. Changing my shirt involves stringing each bag and pump through the armhole separately. It took me 20 minutes to do it yesterday morning, and I probably won't do it today. I am wearing Steve's old T-shirts because the arms are large enough to fit the pump through. Now I need to go figure out how to change the batteries in the pumps because I have to do that every three days.

I like to come out of my room every so often and interact with the family. Ben was smiling at me a lot earlier, and Daniel is just a funny boy. Steve is getting pretty worn out caring for them, though. I wish I could do more to help, but he insists he's got it under control.

chemo starts — and stops — and starts again

They told me that about one in three people who start Doxil get an allergic reaction at the beginning — pain in the back, tightness in the throat, difficulty breathing. It happened to me. My blood pressure dropped, and I was dizzy and faint and nauseous. Kind of scary. They gave me some Benadryl in my PICC line to bring it down, which made me very groggy and woozy, but I was feeling better after about a half hour, which is usual.

They told me it's very rare for someone to get another reaction once the symptoms wear off and they restart the drip. So it was for me, at the beginning. I felt fine. I watched some Sex and the City Season Six with my friend Shannon, who was with me, started to eat some chips and hummus. Then it hit me again. Dizzy, woozy, faint, hard to breathe, a big drop in blood pressure. That was it for my short-lived relationship with Doxil.

They consulted with Dr. S, who came in to talk with me. He's putting me on Doxil's slightly older big sister, Doxorubicin. (Doxil is basically Doxorubicin encased in fat droplets.) I'm going to be on a drip for seven days, just like with the Ifosfamide. Two bags of drugs, two pumps to carry around for a week. They gave me 20 minutes of it at the clinic and then observed me for two hours to make sure I didn't have a bad reaction, and then they sent me home. I got there at 8 a.m. and was there until 4 p.m. Pretty soon, a home health nurse will come over to hook me up to my double drug concoction.

What makes this all the more astounding is that they can't administer Doxorubicin through a port. My double PICC line — which would have been my last choice — turned out to be exactly what I needed. If I'd come in with a port, they would have had to send me over to get a PICC line anyway. It feels like some higher kind of higher force or destiny was at work here.

All the hassle aside, I have to say I am in a much better mood than I have been all week. I'm not happy about what's going to happen to me on chemo, but I'm not in that dark place, either. Big plus.

my beautiful family

One of my favorite times of day is 5:30, when Steve's car pulls up, and Daniel stands up against the window and says, "Daddy!" and waves and pounds his little hand on the window until Steve sees him and then runs for the door. I love seeing my husband walk through that door with a big smile on his face for all of us. It makes my day every time.

Here are a few photos from when the photographer came to our house a couple of weeks ago. Thanks again to my friends who sprang for the photo shoot. You know who you are.

frustration

Setbacks, communication breakdowns, tears, frustration with the oncology nurses, anger eating at me as I fall asleep. "That's what the doctor wants." "Are you telling me I don't have a choice?" "That's what the doctor said he wants." "Well, can I speak to the doctor, then?" I'm not going to go into detail about the crap that's transpired in the past 24 hours. The end result is that instead of having a Power Port in my chest, I now have a PICC line hanging out of my arm — a 43-centimeter catheter threaded through a vein and running to a larger vein near my heart. I'll wear it for the week that I have chemo, and then they'll get the port in me for the next cycle. The nurse who put my PICC line in this morning, a motherly woman named Sally, wasn't above giving me big hugs, and that helped a lot. And they put Pride and Prejudice (the Kiera Knightley version) on a portable DVD player for me to watch during the 15 minutes it took to put it in. It hurt less than I thought it would.

What else? Chemo starts tomorrow. I got an answer to my night sweat question: Don't sleep next to my children, and wash the sheets every day. So that's one more thing to add to the long to-do list of chemo care. I'm totally overwhelmed. I'm still reading up on nutrition. My friend Shannon gave me a copy of Entertainment Weekly devoted to the new Sex and the City movie; reading it last night in the tub made me forget, for a few minutes, that I have cancer.

bad place

Every morning it's the same. I'm far away, in my dreams (last night, I was in Paris), and then, slowly, I wake up, feel the bed around me, feel the pillow between my knees, feel the slight soreness of my hip and in my back when I turn, and it all comes back to me: Oh yeah ... I have cancer. Sometimes, like yesterday and this morning, I think, I have cancer, and I'm going to die. And I get so depressed I can barely drag myself out of bed. I'm all bogged down with wondering: Is the chemo going to work? What if it doesn't work, and I nearly destroy my body and I still have these tumors, and they start growing again? What if I go through all this poisoned suffering for nothing? And what about the week that I'm hooked up to the ifosfamide? Will I be afraid to touch my children? They say my bodily fluids will be toxic, and that anyone else who touches them will be poisoned, that Steve will need to wear rubber gloves to clean anything that I've accidentally peed or bled or spit on. What about my sweat? I wake up in the middle of the night soaked with night sweats. Will that poison Daniel if he rolls into me? Will I be able to feed Ben his bottle, to hold him at all, without worrying that my poison is seeping into him? Will we have to wash all our bedding every single day, with gloves and extra rinse cycles?

If all these worries aren't enough, I've been having a nutritional crisis lately. I've read in a few places that sugar feeds cancer through the production of insulin. I think about the slice from Betty's Pies I ate last weekend, all the desserts people have brought over for us, all the sweet fruits I love to eat, like bananas and pears. Have I been causing my cancer to grow? Have I been unwittingly feeding this cancer with the foods I eat? People send me links to information about raw food "cancer cure" diets, juice fasts and enemas. They tell me stories of people who have been cured through changing their diets radically. And yet I read that a seemingly minor deviation in such a diet can have devastating consequenses or, at least, can undo all the good work. Is it worth it? Should I pursue a nutritional course of action; do I owe it to myself? If I don't, and my cancer gets worse and I die, will I have myself to blame for not having tried every possible option? There are so many decisions, so much guilt.

I feel like I am living in a nightmare.

ten things daniel said this week

• "David Cook"

• "Oprah" (said while watching Syesha sing on American Idol. Oh dear ...)

• "Barack Obama"

• "Rock, paper, scissors"

• "Mommy cell phone beeping"

• "Mommy penis"

• "Mommy boobies" (said after mommy explains for the umpteenth time that "mommy doesn't have a penis.")

• "Pants falling down"

• "No banging flowers"

• "Daddy big hug"

bring on the bald

I went wig shopping today ... and it was actually a blast! Who knew trying on new hairstyles could be so much fun? Luckily, there's a hair salon right around the corner from us whose owner is quite knowledgeable about wigs and helps quite a few chemo patients. She took one look at me and said, "I have just the wig for you." And she was right. After trying out the spectrum of blonde, redhead and brunette (and then some), the one she pegged for me from the start was my favorite, too. It's different enough from how I usually wear my hair that it feels fresh but not outrageously wierd. It feels light and summery — and more chic than anything I've managed to do with my real hair. I'm actually looking forward to wearing it! Here's a side view. It's all fake and very reasonably priced.


And here's my impulse purchase. I put it on and couldn't stop smiling and swinging my head around. I can't wait to wear this one to play group! (And hey, it even matches my tote bag!)



And for when I'm really in the mood to shake things up, I think I'll be sporting this little cap. ;-) (Don't click the link if you're easily offended.)

little happies

My new tote bag was waiting for me when I got home today, and I love it! I'd been looking for something where I could stash my ever-growing notebook of cancer information, plus books and magazines to take to chemo. It had to be organized, it had to zip across the top — and it couldn't be black. I wanted colors that remind me of life. Anyway, I saw nearly the perfect bag in a store in Duluth this weekend, but it was a little too small. So I went online when I got home and found a larger tote in the same line — hooray! It's natural and earthy and green. (The Sherpani Blossom, if anyone is wondering.) It's perfect for me right now!

you give me fever ...

Well. I was all set to get prepped for the port implantation today. I'd gotten a clean bill of health from my dentist yesterday and got a potential sinus infection checked out at the oncology clinic before I went in to make sure I could still go ahead with the procedure. (Have I mentioned that I'd caught Daniel's cold and have been fighting it all week?) All clear.

So I'm lying on the bed in the hospital prep room, and one of the staff took my temperature. I was like, they DID take my temperature just a half hour ago at the oncology office, and it was fine. But whatever. So it was 99.7 or something like that. I told him to try again because, after all, a half hour ago it was in the 97 range. He did it again: 99.8. Dang. The nurse said we'd probably go ahead with the procedure because they don't worry about a fever unless it's over 100.5. She went through all the paperwork, a doctor explained the risks and whatnot to me, and I signed the consent form. Half an hour had passed. Let's take that temperature one more time. 100.5. Whoa! Come to mention it, I WAS feeling a little shivery.

So they cancelled it. There was a flurry of phonecalls between the oncology nurse and me, and finally, we arranged for me to have the port implanted Monday — IF I am feeling better — and chemo start on Tuesday morning.

This was not an easy course of events to absorb. When something difficult is ahead, you get yourself mentally and emotionally prepared to face it, and when it gets postponed, it feels like you have to start all over again. So I handled the news with quite a bit of frustration and tears. Laura was with me, and that helped me keep it together a little bit. And the nurse brought us turkey sandwiches and fruit cups, and that was nice because I'd been fasting all day.

I got home, went to bed, and tried to sleep off the chills and hot flashes that I alternate between. Then I woke up and started reading a book that Kristie sent me by a young cancer survivor who made the documentary "Crazy Sexy Cancer." If a book on cancer can be said to be fun and entertaining, this one is. Thanks, Kristie!

chemo: my new best friend

I found the following on a cancer discussion board I joined. Number 2 is especially fitting right now. (See yesterday's post.) So are 4 and 7. I've been having a little trouble thinking about long-term goals. I'll elaborate when I'm not holding fussy Ben in one arm.

The Ten Commandments for Cancer Survival

1. Thou shalt regard the word, "Cancer", as exactly that: a word. Nothing more, nothing less. For its original meaning has changed mightily over the years, as have such words as Smallpox, TB, and Polio, all once dreaded ailments, now non-existent as maladies. And thus, too, shalt go thy Cancer. The answer shall come to those who shall be present to hear it. Be present to hear it when it comes.

2. Thou shalt love thy chemotherapy, thy radiation, and thy other treatments even as thyself, for they are thy friends and champions. Although they may exact a toll for their endeavors, they are oft most generous in the favors they bestow.

3. Thou shalt participate fully in thy recovery. Thou shalt learn all the details of thy ailment, its diagnosis, its prognosis, its treatments, conventional and alternative. Thou shalt discuss them openly and candidly with thy oncologist and shalt question all thou do not comprehend. Then, thou shalt cooperate intelligently, and knowledgeably with thy doctor.

4. Thou shalt regard thy ailment as a temporary detour in thy life and shalt plan thy future as though this detour had not occurred. Thou shalt never, at no time, nohow, regard thy temporary ailment as permanent. Thou shalt set long-term goals for thyself. For thou will verily recover and your believing so will contribute mightily to thy recovery.

5. Thou shalt express thy feelings candidly and openly to thy loved ones for they, too, are stricken. Thou shalt comfort and reassure them for they, too, needest comforting and reassurance, even as thou doest.

6. Thou shalt be a comfort to thy fellow-cancerites, providing knowledge, encouragement, understanding and love. You shalt give them hope where there may be none, for only in hope lies their salvation. And by doing so, thou providest comfort for thyself, as well.

7. Thou shalt never relinquish hope, no matter how thou may feelest at that moment, for thou knowest, in the deep recesses of thy heart, that your discouragement is but fleeting and that a better day awaits thee, perhaps tomorrow, perhaps the day after tomorrow.

8. Thou shalt not regard thy ailment as the sum total of thy life but as merely a part of it. Fill your life with other diversions, be they mundane, daring, altruistic, or merely amusing. To fill your life with your ailment is to surrender to it.

9. Thou shalt maintain, at all times and in all circumstances, thy sense of humor, for laughter lightens thy heart and hastens thy recovery. This is not an easy task, sometimes seemingly impossible, but it is a goal well worth the endeavor.

10. Thou shalt have enduring and unassailable faith, whether thy faith be in a Supreme Being, in Medical Science, in Thy Future, in Thyself, or in Whatever. Steadfastly sustain thy faith for it shall sustain thee.

by Paul H. Klein
© September 1993
ALl rights reserved.

this just sucks

It's all starting to happen, and it gets scarier by the minute. I am in the worst mood right now and have gotten to the point where every new piece of information sets me crying.

First, an appointment with Dr. S., where we mapped out my chemo plan. I learned that one of the four "sizeable" tumors in my lungs (as opposed to the several smaller-but-recognizable ones and the too-small-to-call ones) grew from 2.2 to 2.7 centimeters in the past three weeks. The others are more or less the same size, maybe slightly bigger. But the thing is, the one that grew - I can feel it, sort of. It's lodged up against a muscle, and that muscle has been sore for the past few days. I feel it when I take a deep breath or turn a certain way.

So I start chemo on Monday. That will give me time to get a few things taken care of this week, including having my dentist check on a toothache I've been having. I hope it's nothing, not something that will require a root canal or something gross and awful. They're also going to clean my teeth because apparently it's not a good idea to do that during chemo - the bacteria that could get into the blood stream, etc.

Also this week, I'm going to have something called a Power Port implanted under my skin near one of my collarbones. (Here's an interesting blog post I found about ports.) It's going to be the entry system for the two chemo drugs I will be taking (plus anything else they need to put in my body). The Doxil will be given in one sitting on Monday. Then I will have to wear the Ifosfamide around for six days, attached by a cord, continuously streaming into me as I go about my day and night. YUCK YUCK YUCK YUCK YUCK. I am dreading everything about it, from the port itself to the drugs that are going into it. Right now I am having trouble putting it into perspective, remembering the final objective - to fight the cancer that is growing in my body as we speak. Radiation was a piece of cake compared to this.

Right now, I'm sitting here in the waiting room of the hospital, waiting to get another scan, this time of my heart, to make sure it pumps well enough to tolerate the Doxil. Because the Doxil can have some heart toxicity. Great. They scheduled this scan while I was seeing Dr. S., giving us 10 minutes notice to get over to the hospital. Steve has gone back to work to get his computer and come back for me in the hour it takes to do this. (Right now, they're radiating a sample of my blood and will reinject it into my IV before they do the scan.)

And then there are the blood thinners, nausea medications, etc., that they are giving me, some in the form of prescriptions I have to fill, others that will go through my port.

One chemo cycle will last 28 days - the Doxil, then the six days of Ifosfamide (in combination with a drug that will protect my bladder from one of the nastier side effects), then three weeks off to recover. I'll go at least two cycles, then get a scan to see how it's going, and then reevaluate.

mother's day weekend

We went up to the North Shore for the weekend and stayed in our favorite home away from home. Daniel threw rocks into Lake Superior with his dad. My hip being what it is (much better, thanks to radiation, but still sporting a small fracture that keeps me on the cane), I didn't venture onto the rocks. I did go swimming in the Cove Point Lodge pool, though.


Daniel had his first-ever taste of Betty's Pies. I think he liked it.


That's me, this morning, with the cove (the one the lodge is named for) in the background. I'm smiling at something Daniel is doing ... over there.


We got Daniel a pair of Crocs in Duluth. I think they're adorable!


My favorite part of the weekend, besides watching Daniel have fun exploring, was just sleeping in, lounging around and having no agenda whatsoever. And watching old movies (Working Girl, The Truman Show) on cable. I woke up this morning to find Daniel standing in front of my face at the edge of the bed holding a card, which he then gave to me with a sweet, proud smile. Moments like that melt my heart — and make up for the minor disasters such as last night's attempt to eat in a proper restaurant. Oy. Traveling with two little ones is definitely tougher than with one.

The weekend was a nice calm before the storm. I have my last radiation treatment tomorrow, plus another CT scan. Chemo could start later this week. I'll know for sure Tuesday.

So ... back at it.

today was a good day ...

... because:

Liz came over to help out with the boys, and she came bearing gifts from her recent church trip to Argentina: soccer outfits for the national soccer team of Argentina, complete with a little ball. Daniel looked so adorable in his, even though it's still a bit big for him. Gotta love the blue socks, brown shoes and ubiquitous paci hanging out of his mouth!

It was a sunny day.

My former coworker Pat drove me to radiation, and it was so good to see her and catch up with her.

I finished my monthly column and turned it in, technically, on my deadline. OK, it was after business hours, but still. It's not easy to come up with one succinct, spiritual column about this cancer business.

I'm getting some nanny leads.

The midwife at my post-partum visit gave me her leftover breastmilk. It felt good knowing that both of us were gaining something positive from the exchange: I can give Ben breastmilk for a little while longer, and she is able to help someone who really needs it. Last night at 4 a.m. was the last time I nursed Ben, and it was probably the last time I'll ever breastfeed again, since we don't plan to have any more kids. That's sad, but it's OK.

Other people have started offering me breastmilk, too. Between that and all the other gifts and kindness coming our way, I feel as if we are being held up in a giant web of love and support. It's so nice.

David Cook is still on American Idol. Yay! Though I have to say, I was expecting better things from his rendition of Hungry Like A Wolf.

I saw my very first commercial for the Sex and the City movie, which opens May 30, and I have to say, my heart went all a-flutter!

Daniel went to bed early tonight, and Ben fell asleep during his bottle, which gave Steve and me some quiet time to hang out on the couch together this evening. With all the offers for childcare pouring in, we really should start going on dates again.

sad news

Around Easter, I mentioned that my friend at The Anguished Corn was undergoing her first round of in vitro fertilization. I didn't get around to reporting that it was a success: She got pregnant with twins. Well, she lost one of the babies this week, and it's been a horrible thing for her to deal with. Please send her, and her husband, your best wishes and prayers. We're so sorry, V. and J.

rake-n-shovel

It's became a mantra around our house now that spring has come. Daniel loves being outdoors, and more than anything else, he loves to "rake and shovel." Daniel tells us of this passion hundreds of times a day. Aunt Sue is coming over? "Rake and shovel," he says, because she takes him outside to play with them. Up from his nap and ready to play? "Rake and shovel?" he implores Steve. Sometimes I hum it to the tune of "Love and Marriage." He has really good form when he rakes, too. He puts his whole body into it.


Ben almost smiled for the camera today — almost. I can't believe he's almost six weeks old. My post-partum checkup is this week. While I know the visit is going to be bittersweet, as the midwives have heard about my cancer returning, I also have a reason to be excited about it. One of the midwives is giving me a bunch of frozen breastmilk she had pumped. The story behind why she no longer needs it is very sad, involving loss no one should have to endure. So I am all the more grateful she is willing to help me this way.

a saturday in may

Everyone in the family got haircuts this week (except Ben, who barely has hair) because we wanted to look nice for Ben's first photo shoot. Some wonderful friends pooled their money and, as a gift, hired the same photographer who took Daniel's first (and only) professional pictures to come over and photograph Ben. (She didn't take this one, though; Steve did.)


Daniel is getting over a hacky-cough, crusty-nose cold. I'm worried he's given it to Ben — one of Ben's eyes has goop around it and sticks shut after he's been sleeping. And I hope he doesn't give it to me because I need to be healthy when I start chemo.


I also hope he didn't give his cold to Father O'Connell, who came over last night to visit. He is the priest who married us and baptized Daniel. We think the world of him, and so does Daniel, apparently — he dropped any trace of shyness and ran around all evening saying "Father O'Connell" and wanting to sit in his lap. I took pictures of that, too, but on my film camera, not the digital. (Low battery.)

the banquet of life

When it comes to my prognosis, I hear two main lines of thinking: On one hand, there are the hard, cold survival statistics that I see in medical articles every time I try to do research about my sarcoma. The words from the doctors, like "probably not curable" and "prognosis not good." On the other hand, there are the words I hear from the spiritual people in my life, like a priest I respect very much who said to me this weekend, "The longer I'm in this business, the less regard I have for words like 'poor prognosis.' I see too many things that the doctors don't see." And the woman I met last fall from Well Within who came over yesterday to do healing touch on me, who told me she hates numbers and forecasts of how long people have left, who told me of people who have beat the odds for no apparent reason.

I much prefer to dwell in the latter zone. Obviously. But how do I go on educating myself about my condition — which all the cancer literature encourages patients to do — and keep my hopes up at the same time? I've started to dread reading the medical articles. They depress me too much, and a big part of me wants to bury my head back in the sand. I know I can't do that, not completely. (Thank God for a doctor friend of mine who is smart and willing to read some of them for me.) And while I would love to place all my eggs in the "miracle" basket and have faith that I will be the woman who beats the odds, I know I can't live in denial of what might happen to me — I have to be prepared, to have my house in order, even as I have hope. How do I do that? Seriously — how do I find that balance?

My dad turned 70 a few weeks ago, and I was thinking about him on his birthday, reflecting on what turning 70 would be like. It was before I knew my cancer had come back, and I was still in my happy place, just enjoying our family and the newness of Ben. I imagined myself on my 70th birthday, sitting on the porch in a rocking chair with Steve, reflecting on the long life we'd had together. I imagined us talking about those years when the kids were young and I had the cancer scare. "Remember those crazy times?" we'd say.

Mary Treacy O'Keefe (the woman from Well Within) says visualization is a powerful tool for healing (making the subtle distinction between curing and healing), and that it helps to imagine a specific scene like that. She told me about a woman who said she wanted to dance at her grandchildren's weddings. Not her children's, but her grandchildren's. I love that idea, too. I love imagining myself at Daniel's and Ben's weddings, putting my arms around my grown sons as we dance and telling them how much I love them and how proud I am of them. (I am crying now as I write this.)

But honestly, am I going to get that gift of time? I hate that I can't embrace this idea freely. I saw an obituary in yesterday's Pioneer Press for a woman who died after a "courageous five-year battle with sarcoma." Five years, I thought. That's pretty good. I'd be relieved if I knew I had five years left. But wait a minute. Should I give up the rest of my life so easily? Shouldn't I aim higher than that? Shouldn't I hold out for my 70th birthday, for the weddings?

Something else comes to mind. It's on a page I tore out of Oprah's latest issue the week before I got my diagnosis. It's a short, powerful paragraph by the African-American studies professor at Princeton, Cornel West. I'm going to type it here because it moves me so much; it's an attitude worth striving for. He says:

The surgeon was rolling me into the operating room for a seven-hour procedure on an aggressive form of cancer that was in the last stage. He said, "I don't understand; how is your blood pressure normal?" I said, "I've made my peace." My response to the cancer was that I was full of gratitude that I had been invited to the banquet of life for 48 years and experienced an abundance of blessings, especially in the form of family and friends. It just turned out that I've been spared for a while.