I’ve had nearly nine years since then. I’ve spent the last three days considering how good a tradeoff that risk was and how glad I am that that drug gave me that time.  While expecting more: remembering the time we passed a flock of newly-sheared sheep along Highway 5 on our way to southern Cal, when our youngest whined unexpectedly into the quiet of the car, “We’re not STOPPING, M o o o o o mmmmm!”

Hang onto that thought.

Tuesday, in OB-GYN, I guess the doctor felt I was being a little too blithe about the whole thing and had to make sure I understood that this…was what was normal and this…was what the ultrasound had showed. She did a biopsy, and wanting to be sure she had enough cells, did it again. She remarked that I had a high pain threshold.

Breathe deep.

I went home and read up on endometrial cancer and the studies on the survival-rate effectiveness (not!) of lymphadenectomy with clinically-observed and the most-common stage 1. Etc.

They told me I would get the results in a week and I was thinking better to wait less than you thought you’d have to than longer, right? And so I hoped it would turn out to be sooner than that ohpleaseohplease.

I got an email this morning asking me to sign into the clinic’s online site. Already? Oh good. I think. Took a deep breath, knowing it would either say what I hoped or else it would ask me to come in to be told the news in person.

Signed in. Went to my inbox there. Slow, slow motion, as if the whole thing were echoing the endless, dragging last three days.

Not even the doctor, just a note from her nurse. No cancer cells. No precancerous cells. No sign.

NO CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It’s a good thing Richard was still home so I had someone to dance with.

Michelle flies home from school tonight for her friend’s wedding. There is serious celebration to be had.

(Ed. to add: that drug was Remicade, and I was put back on it 8 months later for awhile, then three years ago Humira, an improved variant.)

Got a note that he wanted to see me, okay, so, I went in. Got the standard questions. How’s the lupus. BP steady? Weight?

“Well, actually, the weight’s been down a little. My Crohn’s did a flare up last month…”  (Cool diseases! Shiny! New! Colect them all!)

He sat down at the computer and pulled up a graph showing my weight across who knows how long, and looking at one point about midway, he said, “Well actually, your weight’s up a bit from two years ago.”

I looked at him, trying to see if he was serious. He was. Stunned, thinking, Don’t…you…rememmm…. I burst out laughing because, my stars, there was no other possible response to that. “Yes, 104 pounds on steroids!” As in, at least ten of those pounds were water weight on that obscene IV dose. As in…!

But I said no more than that.

To his credit, he laughed at himself along with me.

And more down to earth: she came back today.

She has clearly learned how to manage with how things are now; she didn’t fight it but simply rested on her forearms to eat the nut I rolled to her, but first took it over to the yard and off the hard concrete. Oh!

She had much more energy, though still clearly injured; she had kind of a sideways twist to her leap, a squirrel equivalent of trying to walk in super-high heels with her hips swaying, but leap she could now. A bit slow still, but yesterday I think I could have walked outside and scooped her up; had the wildlife rescue center still been open that till very recently was two blocks away  (their funding got cut), I would seriously have considered trying to get her there.

A much larger gray saw her with her second nut and interrupted his siesta to swagger down from the tree and try to steal it from her. She turned away from him; he came after her again. He saw me suddenly standing up, eyeing him: you leave her alone. This one’s under my care now.

He hesitated, then walked around in a circle as if somehow I wouldn’t follow his movements–and then he leaped on her in an attack, teeth ready to tear into her. (Quite a few of the bigger ones have torn ears; ears seem to be a target in dominance fights.)

But he leaped quickly away again as I started to open the door, and when he was far enough from her that I could aim it specifically, he got squirtgunned for it while she hid in the bushes and trees, up or down I do not know.

But she was clearly so much better than yesterday.  She felt better, she was better nourished, and she had learned quickly how to get by with how things are now rather than inflame the damage by trying to stand upright.

Watching her these last few days has been like watching a part of myself.

I finally sent off a note to my Dr. R yesterday, detailing symptoms we knew too well. It had been nearly a week of it.

He emailed me right back with a clear plan of how to start tackling this, starting with the simple declaration, “I’m sorry to hear this.”

I found a surprising degree of power in that simple declaration. Someone who knew every disease detail but also the potential emotional impact, someone who had hoped with us that the potentially-untreatable might be gone forever, someone who cared deeply and who KNEW…from hospital to hope, every single little thing…

It mattered to him. I knew of course it would. But those words were the most perfectly stated and the most caring rendition of that whole unspeakable everything, and with them, he made all the difference.

And now I could handle it.

I woke up today feeling like that little skunk-striped black squirrel that soon showed up out there: still limping but coping and more food down me and so much more energy than there was before.  I think I’ll be all right.

(Oh, and by the way, when I projected that stitch count to finish that shawl? I forgot to factor in the ruffle. 12,462 stitches in two days. I was determined to bring accomplishment out of the enforced downtime and I did it.)

I have a shawl that I made a few years ago that was different from anything else I’d done, in a way that I wasn’t sure at first I liked; it simply was different, that’s all. I threw it in a ziploc, I threw it in a corner, I didn’t remember what I hadn’t written down and my notes were a total mishmash that I guess made sense at the time. Sort of. I guess it was one of those I’ll get back to it that, till now, I didn’t.

I started it again last Wednesday night. I got the first 20″ worth figured out, written down, tested, knit, and the last of that part done today. It all came out exactly right and written down exactly so now. I am very pleased.

But what was in my notes after that point had no connection to reality–clearly, I’d tried it, chucked it, and riffed. I puzzled over the original while thinking, this shouldn’t be so hard; can we defuzz the brain a bit here? At least I hadn’t let myself give the thing away, knowing somewhere down deep that it was the only representative I had of what, now, I think is a really cool idea.

I took a break, I answered some email, and that’s when it hit me–I knew suddenly how I’d done what I’d done. I grabbed the older shawl again, grateful for its wooly presence, and after swatching, checking, writing, knitting, checking, correcting, knitting knitting knitting–

–I’ve got it. I wanted to enough finally that finally I’ve got it. I am terribly pleased with myself and with it. I can’t wait till the day I get to show Lisa Souza what her sapphire baby alpaca laceweight is now.

Another 5985 stitches and I’ll be casting off.

But I needed not to feel sorry for myself so I finished another hat (my Congressional hats being done.)  Then I made good headway on some lace in the Grape Hyacinth colorway from Abstract Fibers and found that just looking at it puts me in that familiar, magical place where I feel like I’ve never knit anything so pretty in my life. They do nice work.

Thank you Kim and Richard-the-younger for the Parker pictures. Stop the germs, we want to go hold him!

We are so blessed.

Here at home, there is now a Ravelry group at http://www.ravelry.com/groups/warm-hats-not-hot-heads for the campaign to knit hats for our Congresspeople and there will be a Facebook group soon.  If anyone feels so inclined, please, feel free, spread the word on your blog or your knitting group or wherever. If you knit a hat for your congressperson, please shoot an email to Ellen, here if you would; we’re hoping for Feb. 28th as a deadline to get them all shipped by, en masse would be great but if you want to sooner, more power to you. Sending it to your representative’s local office works well, in person even better; the whole idea is to make it feel as personal as possible to them.

Those who tell Ellen so she can put it on her spreadsheet, by whatever moniker you want for yourself there, will be the ones I’ll be able to know about for sure: because when this is all done, I told her that as my thank you I’d like to draw a name and send out an autographed copy of “Wrapped in Comfort: Knitted Lace Shawls” to that knitter, wishing I could do it for everybody. I know, I don’t need to bribe anybody, so many people are already simply diving in and doing this without feeling the need to tell about it, but I’d like to be able to do something by way of thanks to those who do.

Ellen and I talked on the phone tonight, and someone she knew had gone from, I could never knit for…!, to, I need to knit for them. Don’t I. Yes.

And so I told her the story of a nursing assistant in the hospital during my first severe Crohn’s flare in ‘03 who was just an angry person, consistently and bewilderingly mean to her patients–just angry. I wondered why on earth, at that time of all times, I had to be stuck dealing with her. Her accent was thick, my brain equally so in my illness on top of my hearing loss; we were not a good match.

And then a few days into this I found myself wondering what it must be like to be her. Or what got her that way.  What is it like at home for her? Where is her family, what are they like?

That stopped me, and I said a prayer for her: not completely willingly, and apologizing to God for that, but this much at least I could try to do. Please bless her? (So I don’t have to?)

The next time she walked in my hospital room, though, what happened was definitely not sweetness and light: I beat her to it and immediately snapped at her. The one time she had done nothing to deserve it, I just didn’t want her in my room just then, I’d had enough.

And she, instead of yelling back or defending herself, suddenly looked deeply sad. She spun on her heel and was gone.

I felt TERRIBLE. That was so not what I had prayed for, my stars!

The next time she walked in the room it was by coincidence a step behind when her boss did, a nurse who was one of my favorites, and I grabbed my chance: I said to the woman, in front of her boss, “Thank you.”

(Say what?! on her face.)

“You came in here and I snapped your head off and you were kind to me. I did not deserve that. Thank you.” Because I knew that for her, that was the best she could have done and she did it.

After she left I said to her boss, “I’m so glad I got to say that to her in front of you.”

And the boss, a dear woman, answered with a glance to the door to make sure we were alone, “Me too!”

That nursing assistant completely changed. The next time she came in I honestly didn’t recognize her, her face was so different. She looked radiant! She had finally seen herself through someone else’s eyes in a better light.

I later knitted a lace stole in the boss’s favorite color and several more things for quite a few more people there; and I knitted a hat in case I might see that nursing assistant, whose name I never did know–she’d tended to keep her badge turned over, I always guessed so that people wouldn’t be able to complain about her by name.

I didn’t see her but she saw me down the hall when I came back for that visit. She ran down the hall and she *threw* her arms around me with great emotion. She had no idea yet about the hat. No language barriers. Friends, in the deepest sense of the word; she wept, and I knew then that what I had done had meant everything to her.

I said to Ellen, Now, can you imagine if I had NOT made her anything while I was handing out my handknits? Thank heavens I did. Thank heavens I knit that hat.

Ellen said, “It made all the difference to you, too, then, didn’t it?”

Oh you bet. Oh, honey. It was one of the most important things I ever made.

What do I have to say for myself, I thought.  Well now.  Starting at faith and family and friends, there are so many more moments than one could ever begin to say.

I offered the story about the great surprise of my first amaryllis bulb, sent to me at my freshman college dorm just before the start of my first-ever set of finals. It was a birthday present from my dad.  He had always given my mother an amaryllis for her birthday; mine is a week before hers.  With that package, he was declaring me an adult now and his full faith in me and I totally bawled when I opened it.

But what I didn’t say to that teacher was, the intimacy of her question reminded me all over again of how infinitely grateful I am for the skills of the surgeons and everybody else last year.

And for the doctor who walked in my hospital room seven years ago needing terribly for me to live. And so I had to.  Everything else after that only came and only will come because he cared so deeply in that moment about someone he barely knew, rather than trying to shield himself from pain when all seemed lost.

I cannot WAIT to hold my first grandson next month!

I got an update from my medical supplies provider. Seems this one supplier has listened to the feedback from their customers and engineers and Yes! They have come up with a New Improved! version.

(Delete delete delete.)

NO.  (If I even just SAY velcro and bag out loud in the same sentence it’s TMI, but, trust me, NO.)

Every time I think I never have to take the squirrel-on-crack-effect prednisone steroid again in my life, they think up some new excuse. Short term but massive, they want now.

I argued with the nurse. *I’d had a doctor give me a bedside lecture last year that despite my reaction to topical iodine, iodine is an inert mineral that, he said, it is impossible to be allergic to. A medical myth.  The stuff they mix it with? Sure. Iodine? No.

And so (just like last year just the same) they want me to take Pred and Benedryl for a CT scan so I won’t react to this iodine I can’t be allergic to.

I got nowhere. The nurse who called me to tell me had no idea. This is just how we do it, sorry.

Yes, and walking around with 80/40 bp and the like is how I do it, do you know how I react to Benedryl? Is it in my records?  Do you really want to depress that?

You know?  I think I’ve been more stressed about this than I thought I was.

Just before my first Stanford stay last year, when I was too sick to sit up, much less knit, the community at Purlescence filled a large basket for me of newly-picked oranges from Jasmin’s trees and yarn and handknits to cheer me on and to give me something to keep me looking forward.

One of those things was two skeins of Mooi from Nathania, Sandi, and Kaye–a blend with buffalo and cashmere that was probably one of if not the most expensive yarn in their shop. I was alive enough to realize and hang onto the idea of what a treasure they were offering me: in my intense pain and weakness, being able to anticipate specific moments of joy in an as-yet uncertain future.

How do you live up to that intensity when you’re puttering around happily back in normal life? It has been bothering me that I haven’t done that great gift justice. It kept waving other skeins ahead of it, going, no, no, you go on, wool, you’re fine, no problem.

It’s time.  I guess I can’t say I refuse to let this ongoing post-ops stuff buffalo me now.  This is lovely stuff, with a brightness to it that I didn’t see in the ball and didn’t expect as it weaves around my needles, and it didn’t even hit me till I started playing with it that those women had picked the color in their stock that matched my favorite teal-blue skirt they’d seen me in a million times.  Man am I slow on the uptake.

And now I can begin to really tell them thank you for that Mooi. At last.  It’s gorgeous stuff and it is a great comfort. Again. A CT scan? I was worried about a stinking *CT* scan, fer cryin’ out loud?! What was I *thinking*!

(Edited to add five weeks later: I talked to my radiologist brother-in-law, and he said that while one might not technically be allergic to iodine, it is very common for iodine to bind with various cells that one then makes antibodies against–causing a potentially dangerous and yes, allergic reaction.)

One of the often-wonderful things about a teaching hospital is this: someone came in first who introduced himself as Dr. X, but the title was a rather new pair of shoes still being broken in.  He was very earnest. He began to take a history. (Didn’t matter if they had all my history already, this was a skill I imagine doctors spend their whole lives getting better at: how to ask a patient for details, how to observe them in their responses, what the questions should be.)

This guy was bright and he was good and I said to my daughter afterwards, I can see why he got into Stanford.  I told him that since making the appointment two weeks earlier, the symptoms had eased; we chuckled together at that. It’s so often so true.  I told him that you doctors cure things simply by being there for us and ready, and there you go!

He was someone I knew I could say that to.  I say he was good, because I knew from the moment he walked in that it didn’t matter who I was, he wanted the very best outcome for me and he would do everything in his power to make it so.

And he was perfectly comfortable telling me when he didn’t know something (yet, I would add) when I asked him a stoma question.  I thought, that ready humility will serve you and your future patients well.

He was thorough; for instance, he wanted to know how my hearing loss came to be.

I told him about the baby aspirin incident. I felt, by his interested *Huh*!, that I was bringing his textbook learning to life. And again, when I told him about the LE cells in my biopsies eleven years ago at the Crohn’s onset.

He asked me how long I’d had lupus.

I took a deep breath.  So many stories behind a simple question.  And told him simply this:  I’d had symptoms since I was 13; I was diagnosed at 31. In between, there were a lot of “are you sure?” and it must be all in my head reactions, so, “I learned to shut up fast.”

He bowed his head a little and shook it, grieving, and said quietly, “Bad medicine.”

“They didn’t know,” I comforted him. And it’s true; it was much easier to diagnose when it all hit pretty much at once, rather than in bits and pieces scattered across the years.

The surgeon, whom I quite like, came in later, and it was interesting to me that the dynamic changed when I was in that gown now and the surgeon was standing as he talked to me.  Which is how it had to be, no quibbles there.  I didn’t want to waste his time.  I figured that what he wanted to know, besides any questions he asked me directly–since I have seen him at his own question-asking best and know he’s good at it too–he’d just gotten from the other guy.  I was keen not to make him late for his next patient sitting in the waiting room without even my pink-shawl knitting project for entertainment now (one elderly fellow had been quite taken with it), keen to deal with the most specific issues at hand and get them out of the way.

But I wondered afterwards whether I’d done that part as well as I might have or not. I don’t know. Could I have asked more questions? Oh, sure, always.  But he did a good job of taking the time to examine and observe and set my mind at ease.

So what I do know is, I came out of there very reassured that no, the Crohn’s is not back, and I have nothing to worry about.

And that one young new doctor was keen to learn from what I, too, had to offer him in my small part of his Stanford experience.

Well done, sirs.