There’s a whole tree grown now above where they left it, balanced really well somehow over that gaping hole, and anybody familiar with what January ’09 was like for me while I tried to get used to that new number 50 on my hospital bracelet will understand why it so appeals to me that this tree that was expected to be gone grewÂ back to productive life: can you just see the darkened ballet shoe in the gap? Dance!
“In 2001, the Faustman Lab reversed type 1 diabetes in mice with end-stage disease, a project that is now in human clinical trials.” That really got my attention: there is so much research that never succeeds that far. They hope to expand their findings to other autoimmune diseases, lupus and Crohn’s specifically mentioned. Hey!
My cousin Heidi was diagnosed four years ago, out of the blue, with Type 1 diabetes, the autoimmune version of the disease, and her husband’s employer donated an Ipad Mini for her to raffle off towards raising funding for that lab. The link goes to her blog post about it. Heidi asks that people donate directly to the lab, no middleman on her part, three bucks per chance, you get the tax write-off, and then come tell her to be entered in the raffle (and to honor the legalities of it, there’s a no-money option).
And just for fun, in addition to changing the world for the better, someone gets that Mini. You can name it Cooper.
When we came home from Texas last weekend the phone line was dead again, only, this time the problem was inside somewhere.
It was getting old.
Richard stayed home this morning until he tracked it down to a problem in the jack in the kitchen; unplug the wall phone, boom, there you go, just in time. (Sing it, Paul!)
My little sister, 19 months younger than me and who was always almost catching up to me growing up, being just a year behind me at school and getting the same teachers, who (since she was the fifth kid) would say to her like they’d said to me, Oh, *another* Jeppson, called: “How does it feel to be an old fart?”
“Actually, I can’t fart anymore.” I grinned.
That stopped her a second. “I never thought of that!”
More Parker pictures from our trip.
Or not. Huh. Silly computer. Meantime, we’re home. And the phone rang today: I had finally made a hat, out of a strand of Cascade Venezia merino/silk and a strand of sheared mink laceweight, for a doctor whose caring had made a great difference to me three years ago in the hospital. That bit of a flare at the end of this summer nudged me to just go do what I’d so long wanted to do and say thank you; I would regret it–I had regretted it–if I didn’t, finally. And so it came to be.
I left it in an envelope with his receptionist last week with a note explaining why I’d made it: how his words then had said to me, Wow. You’re a survivor! And so I had been.
He called this afternoon. “It’s so soft!” And he’d so loved my note. His voice was full of wonder at it all.
But first he had to get through my thick head. I was hearing the tones but not the words… I’m sorry–(finally), Oh! Is this Dr. F?
He said it again, and the second or third time I got it, and thanked him right back.
Got off the phone, wondering how on earth I had been that deaf on the phone…reached up to my left ear…and found that although I’d put that hearing aid in hours earlier, both of them…
I’d never turned the darn thing on all day.
But he was patient with me anyway. Like I say, he’s a good one.
I missed it the last two weeks with that flare going on. I got my blood test results back yesterday–1.9 on the neutrophils is what it was like when I was on chemo for six and a half years, what’s up with that? Going and being in a crowd was just not the wisest thing to do; things are settling down and the bleeding seems to have stopped and the cardiac cough that was bugging me is almost gone too, so, why would I want to risk revving up my autoimmunity by being exposed to anything?
Because it was knit night. And I missed my friends. And Pamela’s moving away soon.
Coming onto the main drag on my way out, there it was. A Cooper’s hawk, quite possibly my male Cooper’s hawk. On the phone wires running just this side of the train tracks, looking down on the road I was on.
And at that moment I felt like everything would somehow be okay.
It was a very good evening to be at Purlescence. (Hey, and if you want a really good lace shawls book *cough* they’ve got it.) I was so caught up in the drama of go/not go that I’d utterly forgotten that Pamela and Sandi had been working on repairing my spinning wheels. Pamela had wanted to learn how for the sake of when she will be far from the expertise of the shop.
One turned out to be ready for me to take home.
Years ago I found a friend-of-a-four-times-removed friend who had bought an Ashford Traveler spinning wheel. Cute little thing. As far as I could piece together, she put the drive band on too tight and couldn’t get the darn thing to spin worth beans. (She also had her roving separated not in lengthwise strips but short fat wads.) Maybe someone told her she couldn’t get a high enough ratio on so small a wheel to make those linen curtains she was dreaming of spinning and weaving?
So. She bought a second wheel, an Ashford Traditional. Uses the same bobbins. Got a distaff for the flax.
They sat in her garage for years till the day we found each other. She sold me everything: her wheels, a goodly stack of books, all her fiber, getitouttahere, $150.
Eighteen years later, my Trad has had a hard life. One kid tried to balance her Welch’s grape juice on it andÂ stained it a permanent purple puddle; another kid tripped over it and his teenage foot smashed the flyer. That was after the wheel had fallen out of the car and smashed the original flyer and maiden. I bought new parts, again, but after the second blow it was wobbly and a pain to to use–the uprights had a tendency to wiggle apart as I spun and the flyer would simply fall out.
The Trav fared a little better but it was always stiff and arthritic, whatever the drive band. If you pumped the treadle just as hard as you could and then let go, it would turn maybe seven cycles before stopping. I read an article in Spinoff years ago that said it should be closer to 100. As if!
And now the Trav is glorious. It’s scrubbed, repaired, lovely, it works and looks fabulous. They’re not quite done with the Trad, but give them a few days. (Don’t worry about that purple, guys, it’s part of its charm now.)
I can spin again. Do you hear me, life? I can spin my own yarn on my own working wheel again! Thank you Pamela and Sandi!
Can you get in here right now to the lab and we’ll put a stat on it? And then appointment at 1:00.
It didn’t really make sense to go home in between, turn around and come back, so I threw an extra 100g skein of yarn in my knitting bag just in case.
And so, after talking to various people on the phone all week, the GI doctor taking emergency calls today welcomed me in–with great apologies at the wait, and then another wait in the middle as she had to dash out to answer someone, but I told her, I’m just grateful you saw me, thank you!
But one of the first things she said when I got there was, Last time I saw you you were in the hospital!
And I said to her, Your baby’s three now?
She was very pleased that I remembered she had been pregnant. (Secret guilt here that I’d never knitted for her new little one.Â I am going to make up for it now by knitting for her–not out of guilt but because I’ve always wanted to, and now I have an excuse again.)
We discussed. Not the stream of blood while changing the dressing but not gone either.Â She tested: tender here and here, yes, but not really bad and I know really bad. Hmm. Tell you what, she said, I’ll put in a non-urgent request for a CT, and they’ll get you in in the next two weeks; if you don’t need it, cancel. If you need it a whole lot more than you do right now, call me and I’ll mark it urgent and they’ll get you right in.
I asked, and she said there was indeed a new med on the market since the Humira that might be a possibility if it turns out I need it.
There is?! YES!!! She told me the name and I said I’d go Google it; no, says she, I can get you more information than you can get by Googling, here, wait a second and I’ll go get it for you.
Came out of there with a plan and a knitting plan and happy anticipation at telling her thank you for the simple human comfort at being seen in all the ways I’d needed it. Life is good.
Filed under: Crohn's flare
There. No question. No real surprise after the bellyaching of the last two weeks.
My gastroenterologist is on sabbatical till the end of the month. Of course. The new nurse I talked to–well, she tried. After I described the problem re diagnosis of blood hitting air and oxidizing, and this morning there being absolutely no question but it was difficult to gauge volume for that reason…she stopped me with, Did you have any rectal bleeding?
Let me explain to her again why I can never have that again in my life.
Let me explain the Crohn’s+lupus thing.
I’ve got a ton of knitting and writing to catch up on.
(Update Wednesday morning: I simply wasn’t home yesterday, with errands that had to be run, so I never did talk to the doctor; the same nurse called back this morning and totally got it. Today is enough better that we’re holding off on the barium x-ray for the moment.)
Only his name was on their artist list. It’s always been both their names, and I noticed that.
I got there just after four: enough time to visit before the 5:00 close (and after the crowds would have gone way down), hopefully not too much sun. It is amazing how deep and how everywhere the shade is in a redwood forest.
Mel exclaimed in delight when he looked up and saw me. I did too in surprise when I realized that was one of their now-grown sons with him: “OHMYGOODNESS! You aren’t little anymore!”
They laughed. His son glowed, just absolutely glowed, when I told him how beautiful their work is. I know he helps with their production and I’m glad he got to see the appreciation in person. And he remembered me! He wasn’t very old last time I saw him.
Kris wasn’t there.
Cancer last year–and they’re sure it’s totally beaten now, she’s okay, she’ll be here Monday.
!?! I’d had no idea. I just knew that I absolutely had to go to see them, no matter the sun, no matter anything. Monday, Crohn’s flare willing (it’s minor so far), I’ll be there.
Phyl and Lee wanted us to see their photos from their recent diving trip to Bali. We love Lee’sÂ underwater photography; we’d been looking forward to it.
And so they had us over tonight. (Again, yes.)
Walking in from the parking lot, there was something odd in that tree… I walked over the grass to it and looked up.
Some young child had thrown his yellow Tonka truck up in there.
It wasn’t that tall a tree. Canes can be handy sometimes, and I ducked out of the way as it came down and left it waiting at the trunk for its owner to find it in the morning (I hope!)
As we later thanked them for the evening, I reminded them that the last time we’d seen their fish pictures after one of their diving trips, I was in the hospital shortly after, totally tripping out on morphine with bright Indonesian fishyfish swimming through my hallucinations all night, keeping me entertained.
We laughed. And, let’s not.
Paying it forward on that little rose plant…
Richard gave me amaryllis bulbs back in December, and today, the first one was close to blooming: five blossoms showing, the color just beginning to come in.
We have a friend who is just one of the nicest people you could ever hope to meet, who was asking me questions about a year ago about Crohn’s disease; turned out she had just been given that diagnosis and was trying to take it all in. She’s a widow, about retirement age, a lot older than most people get it and with her beloved gone, it made me keenly aware of how lucky I am. I was I think the one person she knew who had it too.
We happen to know she loves amaryllises like I do. So I called and asked if we could drop by tonight.
A few minutes later, she was on the sidewalk with her small dog, watching us pull up.
She was so delighted. “What color is it?” as she held the pot. The streetlights weren’t telling.
“Pink and white, it’s an Appleblossom.”
“Oh, my favorite!”
That bulb was big enough there ought to be a second stalk showing up any time to continue the show. There is nothing like watching something grow as you care for it, and amaryllises do such a spectacular job of responding to a simple daily glass of water.
And to Katy’s beloved late husband: that was for you, too. Your Katy is just the best. But you knew that.
The anti-tumor-necrosis-factor drug that saved my life in ’03 blocks one of the body’s ways of fighting off cancer cells.
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.Â 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.
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.
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…”Â (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.
For the first time ever, this evening I stepped outside just in time to see both my Cooper’s hawks at once: soaring in a wide circle, surveying the neighborhood from above, their wings held wide to ride on the wind, the one announcing their territory with the other one backing her up (while some crows across the street dared not challenge their airspace but moved down among the treetops, trying to stay out of their sight). Breathtaking.
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 awayÂ (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.Â 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.Â 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 had an errand to run. It didn’t even walk, much less run (sorry, Cheryl, hopefully tomorrow). I was glad instead for large swaths that can no longer be inflamed.Â It was a good day for putting up my feet and knitting, 5985 stitches’ worth.
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.
Blockage: clearingnowohthankgoodness. Cold: from me to Richard and back. It surprises me as if it were all something new–which is a good sign, I like being used to being well.
But I needed not to feel sorry for myself so I finished another hat (my Congressional hats being done.)Â 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!