this is the easy part

Lately I've been reading a cancer blog written by NPR's Leroy Sievers, who has brain cancer. Steve heard him speaking on a radio program recently and told me about him. He's pretty far along. These days, he's writing about things like whether to get hospice care and how he sold his Jeep because he hasn't driven it for six months. The other day, he posted something his wife wrote: "So I guess we've been through the 'easy' part of this experience ... it's going to get hard from here on out."

And I realized: I'm still in the easy part. Sure, chemo sucks (really, really sucks). And I don't like that I have to get around with a cane and can't go for long walks anymore and am so much more tired than I used to be. But I'm still in the part of my life — the part of this journey — where I'm still fully focused on living. I can wash my own face. I can walk downstairs to do laundry. I can drive places on my own. I can host a party. I can lift my boys up in my arms. I can (sometimes) have sex with my husband. Sure, dying is a fear on the horizon, and sometimes the idea of it petrifies me. But the prospect of actually going through the dying process hasn't become a reality yet; the doctor hasn't told us to get our affairs in order or take a cruise. We're still working on keeping this thing at bay, and even within the crappy margins of success that exist for this sarcoma, there's still hope that maybe I'll get more time. So we haven't had to turn onto the hard road yet, the one where you know where it ends, and you have to actually face it.

Last week, Randy Pausch died, two years after finding out he had pancreatic cancer. You may have heard of him; I guess he got a lot of press for his book, "The Last Lecture," based on the talk he gave last fall at Carnegie Mellon University. I'd read it this spring and admired the way he dealt with his terminal diagnosis. He was honest about how hard it was to prepare his family for his death, yet he was also pragmatic. He did the things he needed to do to make sure his wife and kids would remember how much he loved them. He took them on trips. He made lots of videos and wrote them letters. He was real, and full of enthusiasm and positivity. And he died. He didn't just go through the motions of preparing to die and then get miraculously healed, as if his positive attitude and fighting spirit were going to cure him. Don't get me wrong: I'm terribly sad for his family, and if he'd somehow managed to live, I would have held him up as a reason for hope. But he did die, like many cancer patients do. He didn't escape the hard road.

I get kind of tired of hearing well-meaning people tell cancer patients that it's important to keep a positive attitude, as if that will turn the tide of the tumors or make chemo more effective. It's a tall order. No one can stay positive all the time — not me, for sure, and I know it's normal to go into that black hole from time to time. Sure, some people are naturally more optimistic than others, but I refuse to buy into the notion that it's the optimistic people who live and the negative people who die. Positive people die of cancer all the time ... witness Randy Pausch.

So anyway ... I'm keeping an eye on Leroy Sievers. He writes honestly and simply about what it's like to enter that hard part of the journey. I feel like I need to know what it's like because I may be going there sooner or later. For now, though, I'm very aware that I'm still in the easy part, no matter how hard things seem.

ben's baptism

It was a beautiful service. Benjamin and a handful of other babies were baptized in the middle of the regular Mass. Our church in St. Paul gets the babies naked and dunks them waist-high in the font while all the kids gather round and watch. The priest scoops water over the baby's head and recites the words of baptism while he is immersed. Ben didn't bat an eye. He likes his baths.


He's smiling now, but I hope our priest is still smiling when our two boys run and squawk noisily all over the back of the church on Sundays! (Yes, that's my "nice" wig.)


The godparents: my sister Ellen, who flew in from Oregon, and Steve's brother Bruce.


We had a little gathering of mostly family over afterward. My parents, along with my sister, are here from Portland, so they got to catch up with Steve's side of the family. Our friend Jennifer prepared a light lunch and had it all laid out for us when we got home from church. She rocks. If anyone is looking for a caterer, let me know.


Ben wore the same romper Daniel wore at his baptism. My friend Anne borrowed it for her son Aaron's baptism, too. It was kind of sad to take it off, knowing we won't be using it again. I wonder if any future boys in our family will wear it.


Steve took this picture of me with Ben, and I kind of like it.


So many photos in a day can make a baby cranky.

four months old

Happy birthday to Ben, who is growing into one of the most good-natured babies I've known. He has a sweet smile for everyone and laughs when we kiss his cheeks. Tomorrow he will be baptized, so this is a special weekend for him.

my blog as a book

I'd been looking around for a way to print out my blog or convert it to book form so the boys will have a way to know and remember me. It's one of those "just in case" goals, kind of like organizing the finances and planning my funeral. I don't like to go to the "just in case" place too often, but boy ... I did get obsessed when I found Blurb.com! I may not be into scrapbooking, but I think online bookmaking may be right up my alley. I wonder if there's a way to get paid for that.


I cloistered myself in our office for a full day and night working on the first volume, which is my posts from 2006 — 200-plus pages. Volume two, all my 2007 posts, took a little less time and is only 128 pages.


For anyone thinking about doing this, the software is free and very easy to use. It imports all your blog posts and photos, in chronological order if you choose, and puts them on pages for you. Then you get to edit and tweak the layouts. There are tons of options for layouts, colors, fonts, etc. I found that because I tend to shrink my photos fairly small before putting them on my blog, I wasn't able to run them very large in the book (unless I were willing to reimport all of them from the original ... which I was not, except for cover art).


The first volume came in the mail yesterday. They weren't cheap (About $70 per book, and I bought two — one for Daniel and one for Ben and unlimited access for Steve, of course), but I'm so happy with the print and paper quality. I uploaded and ordered volume two today, and it should get here in about a week.

a night out for sarcoma survivors

Monday night, I took a nausea pill and got myself dressed for the first time since Friday; after dinner, we all piled into the car and went to the Rein In Sarcoma Party in the Park. (The poster image is of sunflowers, a symbol for sarcoma healing, apparently.) It was a nice night out. The weather was pleasant, the band sounded good, and there were plenty of family activities. I was wearing my chemo backpack and feeling a bit tired, but neither of those things kept me from enjoying myself. We even ran into a family we'd met in ECFE class this spring.

At the bubble-blowing station, Daniel found (and kept ... *gulp*) a battery-operated bubble-blower that he now refers to as his "weed-whacker." A push of the button turned on a low-humming fan that sounds a lot like the saw noises Daniel likes to make. He's shy in crowds, but he was in heaven, aiming it at people very quietly and unobtruvisely, his eyes steadily trained on whomever was in his view, like a little Jedi knight.

The highlight of the night was free rides on Como Park's 94-year-old carousel. I decided I wanted to take Daniel on it. Steve wondered if my stomach would be able to tolerate the spinning. I wondered if I'd be able to climb onto a horse with my bad hip. We both wondered if Daniel would freak out. Yes, yes and sort of.

The first horse I put Daniel on was too high and too big, and when I put him on top of it and stood next to him with my arms around his waist, he immediately slunk down toward me saying, "I don't like it."

The carousel operator came by and told us the bench seats were full, but gestured to a small horse in the middle row a few yards back. We made our way, and I put Daniel on that horse. He responded the same way to the horse, but I was pretty sure he'd do OK if I were sitting on it with him.

The carousel operator, who had seen that I had difficulty walking, immediately commissioned the two guys on either side of me to help out. Lucky me: They were both good-looking and strong! (And dads, riding with their kids.) One of them helped me up while the other held my cane.

As I got settled, the guy who helped me up said, "Hip or leg?"

"Hip," I said. Turns out that at a sarcoma picnic, you aren't too far from people who have been there, done that. He'd had it in his leg, had surgery and chemo and all the works. We traded war stories as the carousel went around, and my self-consciousness about having to ask for help because of my hip evaporated.

Daniel's face went from a frown to a smile. He liked the up-down motion, and he had fun seeing his dad wave at him every time time he came into view. Later, though, he told me the horses were "kind of scary."

As we loaded up the car to go home, the band was playing Gloria Gaynor's I Will Survive, with a few lyrics rewritten for the cancer crowd. It was kind of hokey, but I found myself crying anyway, quietly, sitting on a bench behind the stroller. A woman in her 50s or 60s came up to me and said, "Honey, I have two kids, 22 and 25, and when I was your age, I looked just like you. And now, here I am." And then she smiled encouragingly and walked away.

More tears, but not bad ones.

one day left

I have to go to the emergency room again. My blood pressure is too low, and I reported feeling dizzy when I stood up, and the home health nurse called my oncologist's office, which called back only after the nurse triage office closed, so I can't go there, so I have to go to the eff-ing emergency room, maybe just to get rehydrated. Steve is going to come home early to take me there, and the nanny said she can stay late, so thank God that works out.

This round of chemo really kicked me to the curb. I didn't get dressed all weekend. Just too tired and foggy and nauseous. Just lay in bed and read romance novels intermittent with sleep. Today I got dressed around noon. I'm off one of the drugs but have another day on the other. I hear it starts to affect you more with each cycle, which scares me. How much of this can I take?

Addendum, next morning: Thanks for all your good wishes! Everything was fine. They couldn't find any other clues to explain the low blood pressure, and by the time I arrived at the hospital, it was back up to the low side of regular. They took blood and urine samples and fed me a sandwich. I asked them not to put an IV in if I could take fluids orally, to which the doctor agreed. Steve and I got to watch some HGTV, and I went home with instructions to drink lots of fluids. Today I had enough energy to weed and water the garden. Four hours until I'm off the pumps. Yeah!

round three

This morning, the nanny and I loaded the boys into the car and went to see the ducks at St. Kate's. It was the last taste of normal for the next week. This afternoon, Ryan, the nurse from Fairview Home Infusion who has hooked me up to my chemo pumps each month, came over and hooked me up again. As I write, the chemical taste of the drugs is swirling around my mouth, and I'm slowly feeling them seep through my body. I had a tiny taste of nausea in my throat earlier, which worries me. It didn't start until the second or third day last month. I hope I hold up OK this time.

A woman with whom I used to discuss dreams dropped off some books last night while I was out to dinner with some friends. (We went to the new Salut, where Sidney's used to be, on Grand Avenue.) In the bag was a meditation for focusing on best-case scenarios. It was exactly what I need right now. I've been finding myself drifting too often to the worst-case scenario, almost as a default. I have to force myself away from it — to imagine, for example, that I will still be around when we're deciding where to send the boys to school, or when they become teenagers and we have to talk to them about sex and drugs. So. Best-case scenarios.

At acupuncture last week, the acupuncturist, Susan, suggested that I imagine myself as an 80-year-old woman and have a conversation with that woman. As I lay on the table, I tried it. I found that my 80-year-old self did all the talking. It was comforting and almost mystical, and when I told Susan about it afterward, tears came to my eyes. Acupuncture does that to me, though. It alters my mental and emotional state. I wonder if it alters my physical state, too. I wonder if it accounts for the spectacular results of my blood lab work this morning. The nurse was pretty impressed: "Wow, that platelet level is something!"

loud and clear

Last weekend, we went to a local garden store called Linder's and bought a few annuals and a dogwood shrub to plant in our back yard. The next day, we decided to go back and get another dogwood to plant next to the first one. At lunch, we debated whether to put Daniel down for his nap and have just Steve go, or to load us all up in the car and go. Daniel must have heard us because he loudly proclaimed this fine six-word sentence:

"I want to go to Linder's!"

I smiled. I love his clear little voice. And we all went to Linder's.

Daniel often refers to himself in the third person: "Daniel want to go outside." But lately, he's found his "I" voice:

"I don't like cobwebs."

"I don't like bees."

"I don't like beans."

He's also learning rules and repeats them randomly, as if he just thinks about them a lot:

"Don't run in the street."

"Don't touch the saw."

He is definitely a toddler now. And such a boy.

ben's first boo-boo

Yep ... he got cut with the nail clippers, and now he's wearing a tiny bandage on his finger. He's perfectly fine, but he sure bled a lot at first (and gave us a scare!)


He's also developing his hand skills and is able to pick a few things up. (He can pull his paci out of his mouth, too.)

playmates

Play group was at our house today, and the little girls had a good time playing on Daniel's new race car bed. Who knows when he'll will have four girls on his bed again? Especially four as cute as Annabel, Beela, Evelyn and Calla!


In early childhood education lingo, they tell us about the progression of children's play, and how young toddlers often play alongside each other (parallel play) but don't learn how to play with each other — actually engage each other in play (cooperative play) — until they get a little older. Daniel and Beela stood together at the easel, both drawing on the paper, which is typical parallel play, but then I heard Daniel tell Beela, "That's a line." Is that the beginnings of cooperative play? Maybe. And how about when Beela goes in to give Daniel a goodbye hug? (She tried to give him a kiss, but she couldn't pull the pacifier out of his mouth.) Whatever it is, it's pretty darn cute.

don't know much about history

I have never liked the Fourth of July. I like fireworks, but I don't like pushing through crowds to get a good view of them. I don't feel particularly comfortable at pool parties. I didn't grow up in a family that barbecues or goes to "the lake." (We were in Oregon.) I see the Fourth as a holiday designed for extraverts, not me.

That's why the one and only thing I did this year to observe the holiday was the one thing that comes naturally to reserved introverts: I read the Declaration of Independence. And this time, I really read it and thought about it. I figured, it's probably one of those things I should do in my lifetime, so I might as well do it now. (It didn't hurt that it was a nice day on the patio!) My journalist mind kicked into gear as I tried to translate the 232-year-old text into simpler language (though Jefferson's own is beautiful enough), and when I got to the long laundry list of complaints about the king of England, I found myself wishing I'd paid more attention in my high school history classes. I wanted details.

"For cutting off our Trade with all parts of the world ..."
"For transporting us beyond Seas to be tried for pretended offences ..."
"He has constrained our fellow Citizens taken Captive on the high Seas to bear Arms against their Country, to become the executioners of their friends and Brethren, or to fall themselves by their Hands."

Wow. I knew the colonists didn't like King George, but I guess I had never grasped the extent of the things he had done to try to suppress the colonies. I would love to know the specifics of what really happened to spur all those complaints. It would make a good HBO or Showtime miniseries, I think — I envision something sexy and violent and quasi-historical along the lines of "The Tudors."

I also found myself wondering what the British side of the story was. The Declaration of Independence is written in a highly persuasive rhetorical fashion, but what if an equally persuasive Brit were to write a rebuttal? What would it say? (Oh, I'm sure it's been done, and I am just not aware of it.) Benjamin Franklin had lived in London for a while and was an admirer of English royalty, I think. Did he have trouble signing the declaration?

And then, as I perused the list of names of men who had signed the document, I saw a familiar one from New Hampshire: Josiah Bartlett. The same name as the fictional president on The West Wing, who also was from New Hampshire (but spelled his name with only one t). How did I not know that before?

hard tears

These lazy days between chemo treatments lull me into almost forgetting I have serious, stage four cancer. Sure, there are the obvious reminders, like my cane, like the Hickman catheter that I have to flush and clean every two days, but that's 15 minutes, and then I'm not thinking about it anymore. The summer days drift by, and I'm busy enjoying my boys or sitting on the patio or reading a fascinating book and thinking about how much there is to learn and see in this world, this life. But then it hits me hard, like when Daniel and I are napping on the bed together and he hears a noise and stirs and reaches out and touches my arm and then goes back to sleep, and I see how much my presence comforts him, and I start crying. Or I'm lying in bed with Steve and suddenly the reality of my situation hits me so hard that I start sobbing on his shoulder and punching my fist against his back, almost like I'm having a tantrum, saying, "I don't want to die. I don't want to die. I don't want to go." There's nothing to do but cry, and pray, and then I usually get back to the business of living for each day. But those times haunt me. They haunt me today.

fence

Privacy in the back and security at the gates make for a whole new feel in our back yard. Dakota Fence of Minnesota did the work, and they did a fantastic job with our little space. We are loving it.

Before ...


During ...


After ... (One thing we learned during this process is that the horizontal rails customarily face the yard of whomever owns the fence. The neighbor gets the nicer, finished side.)


Before ...


After ...


A side yard view with the gate open ...


Busy yard ...


"Stuck." That's what Daniel says when he encounters a gate he can't push open. (We decided to keep one side of chain link fence that adjoins our neighbor's very private and beautiful yard. To replace it would have meant trampling on her extensive and gorgeous landscaping — and besides, we didn't want to lose the view.)


The crew (plus Daniel and our nanny) pose next to the main front gate.



Next stop: The garden store! Now that we have a proper yard, we want to try to landscape the back section a little more.

'otherwise'

The date on the faded receipt reads Sunday, Jun 16, 2002. Six years ago. (Edited to correct the math!) Six years ago that I started a ritual of buying a book at Drury Lane Books each time Steve and I visited Grand Marais. Six years ago that I bought the book of poems I pulled off the shelf again last night to revisit. I remember standing in the front room of the little bookstore and picking up this book. I remember how it hooked me from the moment I started reading the back cover. I remember how I cried as I read the title poem to Steve. Last night, we read it again, and we both wept. Here it is:

Otherwise
By Jane Kenyon

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

Jane Kenyon was married to the poet Donald Hall. She died of leukemia in 1995 while compiling this collection of poems.