I took my knitting but it stayed in the bag. I didn’t want to miss a word.

I had extra incentive to go to my lupus support group today: a representative from Human Genome Services, the company that makes Benlysta, was there.

Benlysta being the first treatment for lupus approved by the FDA since, I kid you not, 1955. I think corticosteroids were still extracted from cadavers back then.

The rep was a registered nurse and she knew her stuff and she clearly loved being able to offer good news to patients, at last, at last. She said that now that that monoclonal antibody finally got through, there were more in the pipeline targeting other cells too.

She answered a lot of questions from the group.

I told her I’d been put on Remicade (when it had a black-box warning against its being given to lupus patients) when it was still experimental; we’d had to read about every single mouse that had sneezed before deciding to go ahead with it. It saved my life, so, hey, sneeze away! But after it was approved, all that trial information seemed to vanish–granted, this was going on nine years ago. You know, back when the Internet was still in training pants.

Then she gave us something useful for every patient everywhere: she told us go to clinicaltrials.com and type in your disease.

Someone finally did that?! (Knowing how bad the problem has been of clinical trial information not being shared lab to lab and manufacturer to patients.)

Go check it out.

Cool! (I just did, and it seems a lot smaller than I hoped but it’s a start.)

One of the things she did say was that if you’ve had cancer it rules you out for Benlysta.

Basal cell? I asked.

She considered a moment and answered, Talk to your doctor. (In other words, not a no. Good.)

She handed out her card so we could ask her personally more later if we wanted. Very nice. I laughed in delight when I saw it, then had to explain: my friends back home in Maryland will get it when I say Shady Grove Road. Cool!

And her last name: Hawkes.

Okay, c’mon, now, is that perfect or what? For me, at least. Love it. Ms. Hawkes, your namesakes put on quite a show around here.

After she left, some of the younger patients did too and suddenly it was just us oldtimers left. We talked.

One, it turned out, had just been put in that definite-no category. Bigtime. That was such an unexpected piece of news; we held her in our arms and our love and each of us asked to be asked to do things to help. Chemo is rough stuff. Let’s keep in touch more than this once a month thing.

Cancer clears out the emotional debris and leaves only the things that are most real: the caring. The desire to make things better for each other. Love made luminous.

Lupus does too, but in slower motion and often far quieter colors.

I am so glad I didn’t miss that meeting. That was why I most needed to be there. I’d had no idea.

A three-birthday day around here.

My friend Sterling’s wife gave out his cell number when he wasn’t looking and we all threw him a virtual surprise party with text messages. He thanked me and added as he wrote back, who is this?

Oh, Alison! Oh, okay, cool!

My mom went to her airport to pick up my older sister, who with her husband is taking care of their one-year-old grandson Geoffrey, his parents being deployed; so we got to sing Happy Birthday to Mom and talk to my dad and sister, too.

One year ago, and now… We got a quick Skype chat with Parker and Richard and Kim and we all sang him Happy Birthday, but since my husband was off at work, they’ll try later. Cool–all the more celebration for us!

And I got an answer from the doctor who had ordered the Reclast. The site that had said a low creatinine count was a sign of lupus nephritis had it exactly backwards. Low is good. It’s the high that’s a problem. Given that Reclast can affect kidneys of itself, and, yeah, there will be another test tomorrow, but it does seem to be clearing away.

It’s been probably twenty years since I had to know the details of lupus kidney disease, and I’ve never wanted to go back.

Looks like I won’t have to. Yes!

A certain young man is now officially one, his great-grandmother, that plus 80. It’s a holiday kind of a day all around.  Celebrate!

Amazing how looking up a number on a chart (I got messaged by the clinic this evening) can take a person immediately to the depths, to, (during some treadmill time that was suddenly sorely needed) oh wait, that morning blood test for the Reclast was four days after that mid-afternoon on the mountain in the sun.

Flare. Right on cue. Hey! Stay out of the sun, and the lupus will remember how to stay away from me.

I tell you, I don’t do charts.

My thanks to those who said they had no reaction to Reclast (and yes, that’s what it was); I don’t want to be scaring people.

Mine was fierce: it felt like both my lupus and my Crohn’s went nuts. Shooting pain, joints, shivery fever all night, barfing night and day. It has finally let up just enough that I can sit up long enough to type this. “One of the unlucky ones,” the doctor said to Richard on the phone.

Then he asked if I had hives. No. I really am one of the lucky ones after all; I should be able to take it again, then, and I do need it.

I was reading my messages, glad for the connection to the world outside my room, but was unable all day to sit up to answer them.

One, the best one of all, was from my sister: her granddaughter was born last night, to parents who had been trying to conceive and to carry to term. She’s absolutely beautiful: big wide-open eyes looking back, a full head of dark hair.

Just like my John looked like as a newborn.

We are so blessed.

Today was the true spirit of holiday rush.

Remember that four-year 29% bone loss? (Yeah, steroid meds are fun.) I was scheduled to have my first yearly IV infusion of an osteoporosis drug this afternoon. They needed a morning sample from the lab beforehand, preferably same-day.

At the lab, I asked, wasn’t there supposed to be a blood draw too?

With the place packed and signs pleading for patience saying that they had a new computer system in place and it would likely take a few weeks for everyone to get up to speed with it, they looked me up and assured me no.

Well okay then. I stopped by the house afterwards and then I was going to the annual lupus group luncheon. I look forward to it all year. There are old friends who turn out for it that I never get to see otherwise, and I’ve missed it too many times from having germs–you do not bring contagion to an immuno-compromised group. I had RSVP’d, I was germ-free, and I was good to go.

The phone rang as I was walking for the door. The doctor’s office: I was indeed supposed to have had blood drawn, and it had to be at least an hour, preferably two before that IV, the sooner the better.

I. Am. Going. To. My. Luncheon. And I did: and our group got seated at the door, which kept being left open and I kept getting up and shutting it. Lupus. Sun.  Come on, folks, you know what group is here.

The manager, bless her, said to me that the whole restaurant was reserved and everybody was here and then she locked the door! And put a chair in front of it to try to get people from the other group to go out the far one or at least notice that a message was being conveyed. Go her!

I probably shouldn’t have ordered at all. My soup arrived, a little too hot to eat yet, less than five minutes before I really really had to bag it up and leave (but it was so good). We were supposed to be rung up as a group; they let me pay and go, glad to be able to help. Good folks there at Allied Arts.

But I was stressed out enough to trigger my cardiac cough. Back to the lab. Back home.

This IV was all something new and they told me I would feel like the flu for several days afterwards, maybe even a week. I had no idea how I would react. Richard wanted to come with me to be a support and just in case I wasn’t up to driving home, bless him. I offered him half my soup, still warm.

We arrived at the oncology clinic. The nurse clearly was used to people who weren’t used to IVs, and apologized at blowing a vein on the first try: my blood pressure was so low, it was hard to find a good enough one.

Eh. I knew there’s a world of difference between that and a vein that collapses after a couple days’ use in the hospital and screams at the saline they have to push through it; this was nothing, absolutely nothing. I assured her it was okay, and it took a few tries before she believed me that it really didn’t bother me, none of this stuff did.

Dem bones dem bones dem dry bones. An hour of sitting and quietly reading with no pressures to get anything else done in the moment. Enjoying the quiet.

I’m just glad there’s something they can do!

(Day two: quite good. Yay!)

I was at our clinic today, paying my December bill in person because I needed a receipt for it. I knew that meant I would have to wait; I came with yarn.  I set down my cane and my purse and then the admin lady smiled as my needles came out.

I sat next to a desk, and attached to that desk was a pen connected by a long chain of tiny silver balls to a black plastic base.

The previous person at my seat had painstakingly, perfectly wrapped that chain around and around and a few more times around, so that it sparkled in a circle at the base as if it were a small Christmas tree skirt. Horizontal tinsel.

I was charmed. The woman there was delighted that I’d noticed it too and told me about it. I wondered how long it had taken that person to get it set just so–and I didn’t want to mess it up, but when I needed a pen mine weren’t easy to find and the woman smiled again and assured me it was okay to go ahead and use that one. (I did try to redo the little desk sculpture but it was clearly going to take me a long time and I didn’t want to get in the way of her work.)

From wrapped to scattered in an instant.

I spent the evening with tape and colored paper to try to get some presents ready to go out of here, and soon. Some people do incredible jobs of present-ing a gift just so; for me, I can only hope that they’ll be charmed that I tried.

This is the first Christmas that we have a grandchild who will be old enough to open his own toys: things that wobble, things that go ’round. And you know that means there needs to be a good plain box, too, because those are always the best.

Wow, did I really get off this easy this time? A little joint inflammation that dissolved away like the ocean fog by mid-day, a little in the eyes–but no loss of vision this time. A few cardiac-cough spasms that gave up and went away and were nothing.  So far so good. So different from other sun-exposure episodes.

Thank you for your prayers and your Thinking Good Thoughts: to me, it all matters, whatever your religion or lack of it. It’s all love in God’s eyes. Caring makes the whole world blessed.

And so I am blessed by people I know and whom I wish I could. Again, thank you.

Tonight I finished the baby alpaca hat I began on that mountain.  When it is right it will tell me whose it is, and then it will go from being knit for the whole wide world to just one person in it. At its time.

A side note first in case someone out there needs to read this: last summer I started to make a chemo cap out of a bright white corn-based ribbon yarn, thinking it would go with everything for the recipient and not be itchy.

A few rows into it and it looked like I was knitting a great big garish hospital bandage to plunk on their head. I ditched it.

Today: I had to return something to Lands End. Rather than pay return postage, I looked up where there was a Sears store accepting such. Turned out I could drive south to a mall that I knew required a too-long walk in the sunlight to park, or I could go to the one in San Bruno.

You know, the one just a few streets away from Cottage Yarns. The fact that I’d knitted six projects in seven days, five from skeins I’d just bought there, needed showing off anyway.

The Sears parking turned out to be two car lanes’ width from the door, much safer for my lupus. Bonus.

I’d offered Richard to come with me to keep me out of trouble. (He’s on semi-vacation.) But no; returns and yarn just weren’t his thing.

When I was at the Cottage last Saturday, I bought a single, cautious skein of cotton/modal/I think it had some silk in it too, where’s that ball band, and knit a chemo cap out of it. My hands did much better than I expected; cotton and I are not friends, but I got it done by the end of that day with only minimal soreness.

So, back to the Cottage–only this time, knowing a little more now about gauge and effect in that kind of yarn and what needle size I could use, I took a more serious look at the Sublime Bamboo and Pearls. Again, not knowing the particular yarn yet, I bought just one skein to test.

I’m late blogging tonight because I could not put it down. 70/30 “Viscose from bamboo and viscose from pearls.” So soft! Shiny, just slippery enough to tamp down the effect of inelasticity from the celluloid bamboo, it just poured through my hands like water over pearls. It’s made of many strands but, being rounded well and with my sharpish Holz and Steins, it hasn’t been splitty.

But what surprised me, apart from the fact that it was almost as easy as wool to work with, was the warmth from the strand that suddenly caught my attention in my cool house. Cotton feels cold. I did not expect warmth. I don’t quite understand it; I can only guess the oyster is designed to stay comfortable in its ocean. That 30%, I am guessing, would have been made from what they shaved off the pearls to make them round for market. Purls from pearls knitted on needles of leftover wood from making musical instruments. It danced in my hands.

Kathryn was unexpectedly away taking care of her mom; I did get to show off to her husband, who loved the knits, but not her yet. They had more Sublime colors, you know…

I think I’m in trouble now.

Got a specialist I don’t see too often.

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.

Went to a meet-and-greet for the author Douglas Thayer today.  Found I’d somehow missed out on a really great professor back when I was studying in the English department at BYU years ago.

Meantime, the idiot light on the Prius had come on, and since I had time to deal with it, hey. So I was the one who drove over close to their quitting time, expecting to drop the car off and walk home with as little sun time as I could manage.

The assistant manager, George, said no, no, we can check that out and get you on your way I’m sure, no problem.

Great! Except there were benches to sit on–outside. Only. Um. I did a tour of the showroom and met a salesman who separated himself from the pack and would be very happy to help me ditch my old minivan (later, later, still got a kid in college after these eleven years). Actually, he seemed nice enough: I was glad to see that the obnoxious one that had made me walk right out of his sales pitch when we were buying the Prius didn’t seem to be there anymore.

I escaped: I went back to George and explained about not being able to be out in the sun.

I didn’t even have to tell him about not really wanting to fend off salesmen nor offending them by sitting on the floor watching them talk; without a word, he totally got it. He went looking, found me a barstool-type chair, and gladly brought it back to his tiny cubbyhole of an office. It had a door to outside, access to a narrow hallway behind him, and room for basically him and a customer or two standing. Tiny.

I sat.  We were close to eye level (hey, I’m used to being short). It was a quiet time of day. We chatted a bit; and then, more and more, we really talked.

He told me about his daughter in college. His youngest son’s chronic condition. I was sympathetic, and he decided I was someone he could open up to.

I explained, when he asked, what lupus was–and then I got to watch in his face exactly what had been in my own 21 years ago when I was told what I had and could never in my life from that point on ever get away from.

He was crushed; but then he picked himself up and said, “So you adjust. You find new patterns.”

Yes! And I told him, “I’m a nature lover. And so I bring nature to me.” I told him about the birdfeeders. About the California Thrasher the other day, the vanishingly-rare-here Zone-tailed hawk, things I would never have seen nor known.

I told him about how I felt my children had grown up to be people who see when someone is in need and they step forward to help, that they are kinder and more compassionate for what they too have had to go through with all this.

My car was done.

That’s it?

Yes, and no charge.

?!

He was very pleased.

Trying to pull out of the dealership, there was simply no turning left against the lanes of rush-hour traffic; I gave up, pulled right, went into a neighborhood, came back around and back to a long light.

Where, looking up, I saw a large bird and a small bird. Waiiit… That soaring wing pattern, that’s a raptor… As they flew gradually closer, the small bird was no small bird, it was a crow, and the one leisurely coming up behind that it was getting away from–

–I’ll be darned. It was. It was the juvenile Zone-tailed hawk. IT’S STILL AROUND HERE!!! I got to SEE it again!!! I got home, flipped through my Sibley, but no–there was nothing else that matched it. That was it. Wow. WOW.

George had mentioned at one point his mother back home in Greece.

I needed a quick grocery run this evening, and I decided to go to Trader Joe’s.

Where they had A, B, C on my list… And what I had really come for: a package of baklava for a certain automotive assistant manager to offer a piece of to his customers tomorrow for as long as the sweets last. They may not in any way equal the Old Country’s, but he clearly loves his new one, not for its perfections but, like all of life spread before him, simply as it comes.

No. Four-hundred-forty-three-tiny-stitch rows would not do: I cast on for a hat, added a second circular needle, joined the ends, knitted halfway across from there: Venn diagram established. Okay, *now* I was ready to go to my lupus group meeting. Mindless ribbing at the brim, bigger stitches I don’t have to look at. Go.

Five middle-aged women–three old-timers, a first-timer needing to find someone else who knew about this disease, and me–and… He tends to go on at great length but he’s totally cool with the knit thing, so hey, speak your piece!

I’ve seen him one other time. He was a strong proponent of medical marijuana, and so he was today, though he says he’s off it now–with a faraway look of a tale he didn’t want to go on about at any length whatsoever. Okay, then.

But when he found out I had GI involvement! It is SO made for that, it’s helped him SO much for that! And he pushed me to try it. And pushed. And pushed.

I tried deflecting him, first with the thought that there’s no way to monitor the dosage. Then I tried the smoke vs protecting the lungs tactic. (The new person was totally with me on that one.) Then I tried, “I’m not going to take up smoking at this point in my life.” One woman who knew me was biting her lip, trying not to crack up…

…I beat her to it when he just had to try one more time. I lost it, laughing: “Not sure what a good little Mormon girl would do with that stuff!”

He still just didn’t get it. Bless his heart. He really did want to help.

Did the cardiology stress test and echocardiogram this morning; I messed up their test by being too used to a treadmill. (Not complaining!) Two weeks of on and off chest pains–granted, it was during air alert days–and today they couldn’t induce a single one, not a single cardiac cough nor shortness of breath.

Well then. Might as well combine trips like a responsible driver during Spare the Air and finally go order my new glasses across the street.

The possibly-as-much-as-40-ish fellow taking care of me asked about insurance blahblahblah, the usual, and then took me completely by surprise by asking if I were a member of AARP.

Okay, I must be getting old, that took me straight back to a mental connection to it, fair or not, now, that I have never been able to shake: to the scene in the news of well-dressed well-to-do old people rioting–there is no other word for it–with Dan Rostenkowski, then chairman of the House Ways and Means Committee, cowering in his car in Chicago as they pounded on it. They were angry at his quite reasonable bill proposing to modify Social Security benefits for those who have utterly no need of the money. (Let’s see…checking Wikipedia… A version of that bill passed in ’83? Sounds about right.) They found it the highest insult that their monthly checks might become tainted in their own minds as, you know, welfare, their pride more important than any appeals to generational fairness. Tax their benefits?!

Right. And Warren Buffett needs those SS checks too. We’re still arguing over that, aren’t we.

Threatening to throw Rostenkowski out of office wasn’t good enough–they started rocking his car to the point he thought they were going to flip it over.

(Side note, added later: from that Wikipedia page, I’m guessing my memory was wrong and that it was actually the seniors being asked to help pay for their new Medicare prescription coverage that caused that scene. Anyway.)

Knowing it would take far more words and time to relay or explain any of that than the situation at all called for, I stifled, swallowed, nearly lost it, and then finally said in just the very mildest voice you could imagine, “That would be a loud No.”

He’d been watching my face, waiting for an answer, and at that the guy lost it, laughing, and then I did too, adding, “And besides! I’m only 52!”

He tried throwing in a “You can sign up at 49 these days” and I motioned, Cut! Cut! Noooooo!

He was rolling.

And dang.

There it was. Chest pain. Just enough. (And how’s that for irony.)

I tell you, the thing is as wily and obnoxious as a squirrel with an open jar of peanut butter in sight on the counter and the kitchen door left open. Thank you very much, with the help of my doctors I am keeping that lid on tight and the door firmly closed.

I spent the afternoon puzzling at great length over a pattern idea that had been bouncing around in there for a year, reacting to the day by trying to finally get that unfinished idea to become one with the yarn.

Got it. Good. Time to buckle down and get to work.

p.s. I have to come back and add: watching your heart valve on a screen is really, really cool. You’re seeing the physicality of your very life in front of you, and it’s clapping its hands for joy.

Don wrote about having to wait from 3:00 to 4:20 for a doctor to show up for his appointment, which I imagine is a long wait when you don’t knit.

The one time I got stuck waiting for an hour and a half, years ago, I knew going in that I was going to be one of the last patients of the day; I imagined all those extra moments adding up throughout the shift as that good doctor would have been taking his time not so much by the clock but as each patient needed him. I knew from experience that he would do so for me, so I certainly didn’t mind if he did it for others. I came prepared.

And so I sat in the exam room in my paper gown, yarn in hand, and waited.  And waited and waited. And waited some more. You know, it was getting to be a bit much, though, especially since I hadn’t heard any voices going past in a goodly while.

Finally, I peeked out into the hall and all the lights were turned off! Except the emergency nighttime ones! (It was winter.)

I knew it had been awhile, but– ! I called out loudly into the dark, empty hallway, feeling foolish. No response. Finally, I ducked back in the room and pushed the emergency call-nurse button, figuring if anybody answered, great, if not, well, they’re sure not charging me for this appointment!

A nurse came rushing in about 15 seconds later, very apologetic. The doctor had been held up at the hospital, hadn’t they told me? No, but I could imagine a cardiologist could end up spending a lot more time with a patient there than he had planned on.

The doctor himself finally came in about two minutes after that, embarrassed as all get-out. I was just relieved that I hadn’t been entirely stupid sitting there alone unknowing as the building had emptied for the day, quietly knitting away, glad to have an excuse to get some progress made on the thing instead of anything else needing doing just then. I showed him the work in my hands, tiny needles and fine laceweight, and nodded to the pound cone of soft merino (a gift from Karin, thank you!) that I was working from: see? Thousands of yards left on that. I had a long, long way to go before I ran out of things to do.

You know that if I ever bring a cone to his office again he’s going to burst out laughing and start teasing me that I hadn’t had to wait *that* long this time!

I’m willing to do my civic responsibility if I can. I woke up one day in the last few weeks with my blood pressure so low I couldn’t walk upright for the first little bit, much less drive a car. It threw me; I haven’t had the brainstem lupus flare up like that in quite awhile. But I had been exposed to a cold and that first day especially, my immune system was on the attack.

Jury duty, day one: instructions to check online at 11:00.

Instructions at 11:00: check for instructions at 5:00.

Instructions at 5:00: check for instructions at 11:00. (I’m sure a lot of you know the drill.)

They could require me to show up five cities away in the morning rush hour. Technically, though, I’m already out of there because I asked and was told parking at San Jose would be several city blocks’ walk in the sun and impossible to do in under two minutes. Exactly the thing that would set off inflammation in my brain, eyes, and heart.

I mentioned about the parking to my doctor and he offered me a note faster than I could request it.

The courts are underfunded like everything else and the paperwork appears not to have been processed yet. Part of me hopes, moreover, to be able to play my part in the process of granting someone their fair trial. And so I check my juror number, my pocket scissors already off my keychain.

And wait.

Nope, no bungee-jumping ice cubes today. But I’ve spent most of the last seven hours slogging through some design work that needed to be done, and there’s such a sense of satisfaction in having it come out right after all that work.

Got an email reminder, went in yesterday, got my mammogram out of the way: I don’t think I could have faced my sister-in-law if I had made excuses or just not bothered. She’s lucky she had one done when she did, and even so, it’s a hard fight. She is in her 40’s.

Let me just say upfront, I’ve never understood those who kvetch and forward emails about how awful a process it is. It is not. You’re uncomfortable or maybe in pain for 10 seconds max, four times.

Then it’s done and you’re done and you walk out of there free of all that. If you get to find out you’re one of the lucky ones, all the better. And if not, you have the comfort of knowing you took good care of yourself from the start.

One of the side effects of 21 years of lupus with longterm, severe pain, mostly faded out of the scene now but always ready to flare up a bit here and there at the least provocation is that I find it a struggle at times to be patient with people who have not yet learned that the fear of pain is far worse than any actual pain. Longterm pain is simply a different avenue for learning about life. (The author is at Harvard Medical and knows the subject personally). You can do it.

Now go get that mammogram/colonoscopy/irregular spot (I don’t care how old or young you are, a child of mine was 18 months) checked. We need you around. (That child is in their 20’s. It was caught at the precancerous stage.)