PaperGirl Blog by Mary Fons

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28 Jul 2014

Timeline, Part 1.

by Mary | posted in: Sicky | 23

This slice of birthday cake is the image for this post IN DEFIANCE OF PAIN! (Ironic note: I can’t actually eat birthday cake. Frosting, maybe.)

For folks who might be new to PaperGirl and/or my intestinal odyssey, I thought it would be appropriate to offer a brief timeline of events. I write it down less out of a desire to, you know, write it down, than to inform those who without it might draw incorrect conclusions about the trajectory of my illness or fail to see the pretty extreme case it represents. Most people do not experience the trouble I had with all this. If you thought what has happened to/with/at me is what happens to anyone with UC, you would be (blessedly) wrong, even though there’s no good way to have this intestine-chewing chronic condition.

It’s remarkable to me how many people, upon learning that I have experience (!) with ulcerative colitis, will say, “Oh, dear. My [family member, kid, self] has had Crohn’s since 2006; I know just what you’re going through.” Too many people say this. [EDITOR’S NOTE: Oof, that came off wrong, I think. I meant that “too many people have these diseases,” not that too many people offer their empathy! Heavens!]

Warning: I’m not going to mince words, surgeries, or diagnoses. Again, in the interest of providing information for those who are perhaps facing a diagnosis, or for those who care to know more about a worst-case scenario, I’ll give you the straight dope on what’s happened to me up to the present day. It’s like I’m donating my body to science without having to die! Yet!

August 2008 – Over the course of several months, the weird symptoms I had experienced on and off for years grow grim: I am passing quantities of blood and what seem to be chunks of tissue. The month or so before I go to Mayo Clinic, I am using the toilet 30 times a day.

September 27th, 2008 – My wedding day. No symptoms. Blissfully happy.

October 20th – Mayo Clinic. Drive through the night. Doc takes one look at me and sends me to ER. I am put on heavy steroids and NPO (“nothing by mouth,” not even water, for fear one sip will burst my colon) for seven straight days; this does exactly nothing to my colon, which is “in shreds,” as one doctor put it. I am diagnosed with advanced ulcerative colitis.

October 15th-ish – Surgeons tell me I have two options but really only one option, since the steroids are not working: J-pouch surgery. This is where they remove your entire large intestine and fashion a new plumbing system for you out of your small intestine, called a “j-pouch.” While this new plumbing heals inside your body cavity, you pass waste through a temporary ileostomy, or stoma. A piece of my small intestine will come out of my tummy and I’ll wear a bag, in other words. I “choose” the surgery. I ask when it will be. “Tomorrow,” says the surgeon, and I sign on the dotted line. It snows in Minnesota that night.

October 20th – Surgery. I wake up screaming. Insufficient anesthesia.

October 20th-November 20-something – Everything that can go wrong has gone wrong. I have abscesses, infections. There is a leak in the new plumbing. This is not typical. An NG tube is placed. A PICC line is placed. Many IR drains are placed. My insides are “bathed in pus,” as a later doctor would say. TPN (feeding tube.) Thirty-pound weight loss. Horror show, fun-house-sized syringes extract fluid and pus from my abdomen. Stoma separation occurs, which means my tummy pulls away from my stoma and there’s an infected moat around the thing. My then-husband and mother are living at the hospital, basically. I am on a Dilaudid pain pump and live in a world of stoned dread interspersed by visits from residents with bad news. Mom asks lead surgeon if I’ll die. “I don’t think so,” surgeon replies.

November ’08 – Home to Iowa. Full-time care needed. Mom flushes drains daily. Husband gives Heparin shots. Everyone is depressed.

November ’08 – February? March ’09? – Skeletal. Sick. Why am I not getting better? Trips to Rochester, MN through ice and snow. I remember very little, then or now, of this time.

Spring ’09 – Return to Chicago. Ditch Mayo for Northwestern. Infectious Disease team finally cures the bacteria swimming in my gut. I begin to eat again. Stoma healed.

…and I actually have to pause here because this is when the really bad stuff happens and I’m a little exhausted from recounting this much, frankly.

Second half of timeline tomorrow, if you dare. Get some cake, maybe!

27 Jul 2014

“What’s Up, Doc?”

by Mary | posted in: Day In The Life, Sicky | 22

Moving to a new city means finding a new salon, a new grocery store, a new bank branch. For me, it also means finding new doctors. On my shopping list: GI, OB-GYN, primary care, anesthesiologist, and possibly a colorectal surgeon, but I was crossing my fingers that last one could wait. Looks like not.

It’s not that I want to have all these doctors. I’d like to have zero doctors (no offense to any physicians out there) but that’s not realistic for me. My case file is the size of an oak tree stump: I need people with stethoscopes in my life. And so I did some hunting and found a primary care doc I like and he has so far made good referrals to me.

On Wednesday, I saw my new GI. It was my second visit. He was wearing a bow-tie this time. If he had been wearing a bow-tie on my first visit as well, I might not like him as much as I do. But he is a man who clearly varies his bold neck-tie choices; this causes me to put more confidence into him as a physician. Sure, it’s solid reasoning.

Dr. L. is concerned about me. I’ve got some issues that aren’t going away since my last surgery in 2011. Sometimes they hang out off in the distance, sometimes they creep into the frame and cause real trouble, sometimes they come in and kill everything.

“Have you ever considered…” Dr. L. paused, and set down his pen. What he was about to say required full eye-contact.

“Have you ever considered going back to the ostomy?” he asked. He paused. “Choosing a permanent ostomy, I mean?”

I didn’t say anything. “Choosing” is not a word that has come into play much in the years since I was diagnosed with ulcerative colitis. Not in doctor’s offices.

“The troubles you have, they would go away with a permanent ostomy,” Dr. L. said. “It’s a big decision, I realize that. But…” I was staring at my feet. My feet were dirty because I live in New York City now and New York City is filthy and I was wearing sandals. My feet looked cute and filthy. I thought about how my sister and her fiance Jack went to Tokyo for New Year’s and Rebecca told me all about how in Tokyo, there are no garbage cans. Everyone packs their trash in little bags and throws everything away at home. Toyko compared to New York!

“I’m not sure I’m ready for…” I trailed off. “I don’t know.” My voice was a croak. The ostomy. Permanent. I thought I was done.

My throat felt tight and hot. Though my body is often weak and I live an inconvenient, painful, and senseless physical existence (as it relates to my guts) 80% of the time, the one thing I have going for me is that there is not, presently, a bag affixed to my abdomen that catches excrement that oozes out of a pulled-out piece of my intestine. I did have one of those bags and one of those pulled-out pieces of intestine for about three years, in total. Not great.

But what I deal with now is also not so great.

“Do you think,” asked Dr. L., “That your partner would be okay with something like that? Do you think he would be…understanding?”

My heart clenched. An inward moan. Yuri.

“I don’t know. I’m not quite ready for that, Doc,” I said. No crying, no crying. “He’d be wonderful, sure, but… I’m just not. He’s younger, you know, and I just, ah…” Tears were forming and I needed to stop the conversation immediately. “I’ll think about it.”

“Okay,” said Dr. L. with a kind smile. “I’d like you to see a colorectal surgeon about a treatment we can do for you in the meantime.” He then explained the treatment, and I was glad he did because it’s so awful, it got my mind off the ostomy. I could instead be horrified by what the surgeon will do to me (for me?) in a few week’s time. Much easier to focus on that and my filthy feet.

“Thanks, Doc,” I said, and got the surgeon’s name and number. “I like your bow-tie, by the way.”

“Thank you,” the doctor said, and went out the door. I hopped off the exam table, removed my paper gown, and got dressed to go back out into the city.

26 Jul 2014

“The Picture of Health”

by Mary | posted in: Sicky | 7

It’s not often one does a google image search and comes up totally empty-handed, but if you’re searching for something truly obscure, it’s possible that there will be a “No results found for [blank]” message. To give you an example of how rare an occurance this is, I tried to think of something that for sure could not turn up any image results whatsoever. I typed in “Beckett peanut butter sandwich.”

Tons of results. Thousands.

It came as a great surprise, therefore, when I entered in (in quotes) the common phrase, “the picture of health” to find an image for this blog post and got the “No results found for ‘the picture of health'” message. Really? That surprised me. Though there were images for the picture of health without quotes, they were not what I expected, really. I suppose I thought I’d get beaming cherubic children, or expensive stock photographs of doctor/patient interactions, etc.

The best of the lot was the above picture from the Department of Health Sciences and Technology in Zurich. It’s unclear what’s going on, here, but there’s at least one object visible there in the office that one is not allowed to touch; judging from the intricacy of the robot-lobster the older fellow is strapped into, I suspect there are a few more.

I wanted to find a picture of the picture of health to be ironic. I’m not exactly the picture of health but I’m better than I was on Monday. This whole week was a bit of a wash, I’m afraid. When I was actively feeling very poorly, I was flat on my back. That was a couple days. Then there was a Doctor Day, when I got some disturbing news that I’ll share tomorrow (too tired, psychically and physically, at the moment, to go there), and then there were a couple days of Getting Back on My Feet. Today, I was hale and hearty enough to finish a quilt top and eat some chorizo scrambled eggs, so I’d say ground has been gained.

Thank you to all the well-wishers — you shall be justly rewarded. I’m not sure how or when or if I’ll have a lick to do with it, but surely something positive must come when we send funny texts and things to those who need a laff.

24 Jul 2014

Why I Love Jennifer Paganelli.

by Mary | posted in: Day In The Life, Paean | 8

Paganelli, with George. Promotional photograph. — Paganelli, with George. I sat on that bench!

I have made a new pal this year. Her name is Jennifer.

Jennifer is a rawther famous fabric designer, and I might’ve met her at Quilt Market, or maybe at an industry cocktail party (not that I go to those all the time but it’s possible.) We didn’t meet that way, though. I first met Jennifer Paganelli outside a train station in Connecticut.

One day last spring, a mutual friend and I were invited to her home for the day, because that’s how Jennifer Paganelli is: if you’ve passed a basic-level “this person is not a psychopath” test, she is more than willing to make a seat for you at her (fabulous) dinner table. And so it was that my friend and I took the train from New York out to Connecticut and Jennifer met us at the station in her car. I remember she had this great navy blue, boat-necked sweater on. (Why do we remember these things and not other things? I don’t remember how she had done her hair. And isn’t it funny how we often stress about our hair when it’s the sweater everyone remembers.)

When I first started making quilts, I was as dazzled as anyone else by the amount of gorgeous fabric in the world. It was 2008, and I had a stash to build. My local quilt shop, Quiltology, was run by my friend Colette, and Colette had excellent taste. She stocked Kaffe Fassett, Joel Dewberry, Kona Cottons in as many shades as she could fit, and bolts of other fabrics by great designers who, for this quilter, absolutely provided the inspiration needed to get started on making quilts that didn’t look like my mom’s. If you’ve heard me lecture, you know that a) I love my mom, b) I love my mom’s quilts, and c) I don’t want to make my mom’s quilts. The fabric I found at Quiltology and online was the beginning for me in finding my own path in the art, and, eventually, in the business.

Jennifer Paganelli prints — there were many on offer at Quiltology — are in all my first quilts. Her fabrics are in a lot of my later quilts, too. Heck, I think there’s one in my latest latest quilt, the one in my machine right now. These are fabrics full of color, whimsy, good-humor, and generally full of life. Basically, the woman’s fabrics are like the woman herself. And her extremely large dog, George. He is also full of whimsy.

At the house, we spent time in her archives, looking at just some of the amazing vintage textiles she collects. It was upstairs in a studio room where I spied of the original fabric that I had used years ago in my first quilts. If you’ve ever tried to squelch a fangirl moment, you know how I felt. Jennifer and our friend were checking out something on the other side of the room and then I squawked. It went something like this:

ME: Oh, wow! Sorry. I know this fabric. I had this in a couple quilts and actually, you know, the laminate version… I put that down as the liner in my silverware drawer for several years. That’s like… That’s like my life, that fabric.

JENNIFER PAGANELLI: (looking over, smiling.) How cool is that?! That’s great!

ME: It’s so cool you designed this. That is…cool. Wow.

I’m saying I was real smooth, is what I’m saying.

Throughout the day, Jennifer absolutely showered my friend and I with gifts (I have a Sis Boom skirt and an apron combo I wear when I’m baking that Yuri likes quite a bit) and then her husband made an absolutely delicious dinner for everyone. There was tender, juicy meat involved, fresh vegetables, and also ricotta cheesecake, which, coming out of the oven the way it did in that big beautiful farmhouse in Connecticut, it may have been illegal. Some old vice law on the Connecticut books was surely violated when that pillowy, sweet-but-not-too-sweet ricotta masterpiece was placed on the marble countertop. Oy.

Way more important than all these (oft-literally) material things to a new friendship, though, is the other stuff. Jennifer has become a true friend because she is a good listener and because she has great compassion for humans. She is also really funny and her life, from what I have surmised, has all the trappings of a well-lived-so-far life: joy mixed with suffering mixed with change mixed with survival mixed with joy.

And so this is my blog post about my friend Jennifer Paganelli. Thanks, Jen, for helping me out. I woke up today wanting to do something out-of-the-blue nice, just because. I woke up wanting to do something you would do.

22 Jul 2014

Girl Down.

by Mary | posted in: Sicky | 9

Image: National Archives and Records Administration.

I am unwell.

Tomorrow, the doctor. Until then, enjoy the above picture from the National Archives of one Miss Elizabeth L. Gardner, WASP (Women’s Airforce Service Pilot) pilot of Rockford, IL, as she “takes a look around before sending her plane streaking down the runway at the air base” at Harlingen Army Air Field, Texas. Photo taken sometime around 1943. Isn’t she something?

And for those who want more, more, more, how about this quote from Rebecca West, which I had tacked up on my bulletin board in Chicago for the better part of two years after ripping it out of my planner from the year that came before that. I think there was one period of time I heeded West’s inferred point (that a life lived pleasurably, even hedonistically, is a solid choice) but I don’t recall people around me liking it very much.

“I take it as a prime cause of the present confusion of society that it is too sickly and too doubtful to use pleasure frankly as a test of value.”

And you, darling. How are you feeling?

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