I just walked to the bathroom without my cane, which is a small – but significant – victory for me. My balance is getting better, I’m trying to do balance exercises a few times a day and I think they’re working!
Andy rearranged my room, so now it feels like I have more room, plus the drawers I need to access are all pretty close to me, so that makes life easier.
I think I’m going to try to make it downstairs today, just for the change of scenery and maybe to watch a movie with Andy. As I’ve discussed earlier, my mind wants to be fully well TODAY, but my body disagrees with that plan and insists on a few extra months.
I’ve had to cancel teaching up through April, and probably after that, too. It makes me extremely sad because I miss my students, I miss teaching! And, I’d be lying if I didn’t say that I miss the income. Since June I’ve had only yarn sales coming in, which feel like a lot sometimes, but this year is DEFINITELY our slowest year to date because so much of the focus has been on getting ME better. I feel guilty for that, I feel like I’m bringing the company down, but Kathleen tells me not to be silly.
It’s freezing here, as it probably is where you are, too! There are definite benefits to being in bed for most of the day, it’s the warmest place in the house!!
The truth is, dyeing yarn is my passion, designing patterns is my joy, but selling yarn is my business and our income. With Gerry out of commission from his myeloma for 12 years, my teaching, design work, writing, and yarn sales are our complete income outside of disability, which is small.
Putting the kids through college has been a tough but necessary thing, and now that Andy is out that’s a huge relief. Down-sizing last year so we could consolidate everything could NOT have come at a better time, especially in hindsight. Somehow we had the presence of mind to set ourselves up for THIS cancer adventure.
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The Other Half Of MKY
Aside from me, though, there’s Kathleen to consider. At a point when Kathleen was between jobs, I mentioned that I’d always wanted to start a business dyeing yarns that were as easy to care for as they were beautiful. I feel strongly that most folks make knitted items as gifts (for themselves, for others) and giving a gift with instructions can be a hard thing in our modern busy age. “Here’s a lovely baby cardigan I made for you, now here’s how you have to hand-wash it so you can enjoy it more than once!”
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Kathleen jumped in and said she was “in!” We each put up $1,000 and the use of Kathleen’s personal vehicle and garage for yarn storage and my own gorgeous 3 car garage as our dye studio. We’ve made it work, and slowly we’ve built our assets and our customer base and have made a very good team.
Working out the kinks of our friendship along with the kinks of a young business partnership has been refreshing and 99% wonderful, like a lovely type of marriage. I don’t want to leave Kathleen in the lurch by my absence, and selfishly I don’t WANT to be absent from the entire business.
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There is something SO special about women working together toward a financial, business goal, and Kathleen’s been remarkable every step of the way.
Kathleen is a HUGE part of MKY’s success; her knowledge and ability to help customers with virtually EVERY aspect of the yarn buying process is astounding. She single handedly arranges out travel schedule and builds our kits, creates mini skein sets and handles the taxes and insurance angles of the business. If we have a well-run business, it is definitely due to Kathleen. I dye the yarn and design the patterns, she does the rest!]
Obviously I won’t be able to attend any of the yarn shows this Fall, and leaving this mess on Kathleen’s head is one of the things I feel the worst about.
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So Let’s Keep Growing!
ModeKnit Yarn has been doing well these past 5 years, growing steadily and providing a better-than-part-time income for Kathleen and myself, paying bills, hiring a few outside folks and reveling in the community of knitters and fiber artists that we inhabit.
It is by no means a HUGE income, but we make it work, and it’s also been a blast! I will miss the travel and camaraderie more than anything, and I’m so impressed by Kathleen’s ability to jump in and line up a bright array of friends and former employees to dive into the biz and be our new “booth assistants”. I’m actually a bit jealous of all of them.
Because I’ve been so low energy for so long in the booth, realistically my presence isn’t such a bonus these days. In fact, when I was relying on pain relievers to get through a shift I’m afraid I was absolutely terrifying in my stream-of-consciousness riffs that would alternately delight and dismay our customer base.
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A New “Mode” Of Selling
We’re going to try to revamp the business for the foreseeable future so that it’s less about ‘dyeing on demand’ and instead will be ‘dyeing what we feel like!’ (or, rather ‘deying what we’re able!’) and then offering those yarns for sale in small batches on our website, more of an etsy type system.
I’m just not certain of my strength of body or mind to be able to match colors from our palette and satisfy customers.
Disappointing more folks is the LAST thing I want to do this year. I feel responsible to try to keep things as profitable as possible while I’m out of commission with radiation and chemo.
“It is MODEKnit Yarn, Darling!”
The plan at this point is for my dye assistant, Layla, to pick up some of the slack I am dropping during my recovery, and perhaps to do some specialty orders. We won’t be up to our old dye schedule for quite a while, but perhaps we can devise a new normal to allow us to continue to develop color ways, products and projects, while at the same time allowing Layla and Kathleen to have more creative input into the biz.
That part is HARD for me. I wouldn’t call myself a ‘control freak’, but my NAME is on the company (well, 4 letters of my name…) and I feel an ownership of the creative side that I might not feel if we had just named our company, “Minnesota Nice Yarns” or something like that.
Stay Tuned Instead we chose as our tagline, “Make Something NICE!” because – Minnesota!
So far we’ve photographed about 1/4 of our yarns, I’m in the process of creating individual inventory items for everything we’ll be selling. Hopefully this will have the happy outcome of allowing us to align our WooCommerce and our Square inventories (I have a plug-in!)
Now the question is, can I create a bit of clarity of mind to actually CREATE this thing. Radiation brain, friends, the struggle is REAL!
Didn’t I See This In “Alien?” To be honest, most of June is a blur of cornfields and pain.
We had been considering driving in one big swing from St. Paul to Iowa, then slowly meandering down to Houston for the following week, and then home. But I was feeling bad enough that I really needed those extra two days in St. Paul after a very hot weekend at the Iowa Sheep & Wool Fest.
I were VERY fortunate that Max was available and willing to travel with Kathleen and I to Iowa and to Houston, and I felt it was a little unfair to take him away for an entire two weeks when there was a chance for him to connect with friends for a few days between the shows, too.
Also, the Iowa show was 3 hours away, and I was in pain and longing for home, and I hate to leave Gerry entirely alone for two weeks. So back up to St. Paul to regroup, a day or two to skein up some yarn and to allow Kathleen to label it up, then back on the road bright and early heading for Houston, TX!
The trip to Houston was everything we’d expected; sweeping vistas of Iowa, Missouri and Oklahoma, truck stops, feed caps, hot car, motel rooms with extra side rooms & pull out beds (or trundle bed, in one place…) for Max. I was actually so impressed with how green and lovely the land south of Waco looked, it was unexpected, and beautiful!
The Berry Center, where the Houston Fiber Festival was held, is absolutely lovely. It was easily one of the most beautiful shows we’d been involved with.
I kept thinking of it, in my heart, as the “Mary Berry” center and imagined all kinds of pie and cake judging going on inside the many conference rooms.
A bonus was that Frank Bielec from Trading Spaces was wandering around the show and really loved one of my designs, which made me feel like a mini-celeb! I stupidly didn’t get a pic with him, which made me sad. Well, it’s long been said that with Frank, you snooze, you lose!
Pain Is NOT Your Best Teacher
But I was crazy busy with six classes, most of them sold out, still working under the uncertain diagnosis that I had costochondritis and a sprained back. My students were among the smartest and kindest I’ve ever taught; friendly, loving, hard working, considerate, engaged and eager to help me, too, because my pain was palpable.
I became so confused in my last class that I totally screwed up one of the key instructions in making the wire bracelet we were knitting, and that mistake — and my ongoing pain which was growing stronger and scarier — reduced me to tears at the end of that class. I still feel embarrassed at how the class ended, and I am so grateful for the kindness of the students in the class who seemed to rally around me.
None of us knew it at the time, but the chest pain that overwhelmed me whenever I sneezed were lymph nodes growing, the back pain that made it impossible for me to walk or stand easily was a tumor pushing through my T10 & T9 vertebra.
I’m hoping that information will help put my limitations as a teacher into perspective. I never think I’m someone who DWELLS in guilt, meaning—I don’t try to find the guilt in myself on a regular basis—until I write these pieces. Then all that I seem to remember are the huge pools of guilt and shame I sat between at the end of that knitting with wire class.
My husband’s family—as every Jewish family in NYC I know—jokes about the deep ocean of guilt that travels with them as they move through life. They don’t even deal with pools, they jump right into the Dead Sea and float around in it for a bit.
My mother had a slightly different, more pragmatic take. She used to say, “If you feel ashamed, apologize. If you feel guilty, make it right.” She did NOT hold with misspending energy on something that you should just fix.
She ALSO didn’t believe that folks should be prideful. She liked folks to HAVE pride about their appearance and their general sense of being (she called this “self respect”) But actual PRIDE made her a little bit uncomfortable, a bit non-humble. And although she LOVED a good 4th Of July parade, the 80’s were hard for her.
We used to go to my brother’s high school and they’d have a banner up, “Panther Pride!” and my mother used to shake her head and say, half in jest, “Why can’t they just say, ‘Panther Self Respect!'”
Every knitting I teacher I know guards their style and their secrets for a great class (it’s all the one secret, love your students…) and, sadly, we rarely get to take each OTHER’S classes! Hmmm, maybe while I’m recovering I can sneak into a few local classes… I think if we took someone else’s classes every now and then, it would give us a healthier respect for what we ALL do!
One Favorite Teacher
I’ve taken one of Robyn Chachula‘s classes whenever I can. I started as a crocheter, I didn’t knit until I was 25, but I consider the act of teaching crochet to be MUCH harder than teaching knitting. Crochet teachers have to trust their students to SEE what the teacher sees, and that’s difficult in a one-hook craft. With knitting needles, it’s very easy to use my two needles to “frame” a step or a stitch that a student must recreate. With crochet, it’s so much of a crap shoot!
Anyway, Robyn is among the best teacher’s I’ve ever seen. She can show five different folks five different steps at the same time and remain patient and cool. Anyway, taking a class from Robyn doesn’t necessarily make me feel like a lesser teacher (although I would DEFINITELY be a worse crochet teacher than she is!)
No, quite the reverse. Taking a class with Robyn allows me to see the LOVE that pours out of a good teacher, and I think I feel that same love between myself and MY students. Being a better student makes one a better teacher, what an odd concept.
And, like any love, sometimes it can be difficult to express it this teacher student love in the space of 3, sometimes tense, hours. Add to that pain, which is one of the strongest love blockers I know, and it’s an uphill battle. When you’re in pain, all you can think about is YOU, YOUR BACK, YOUR PAIN.
The Cost Of Pain
It’s a terrible thing when a friendship or marriage ends. I think, quite often, there’s been some deep pain episode which supersedes either parties ability to rally and connect with each other. Gerry and I have talked about how lucky we are that, at the advent of his cancer, he was covered by his UNION insurance (Thank You IATSE Local #1)and that made all the difference in our ability to even KEEP our home for the first 5 years.
Yesterday he said in the car, “You know, this time around you have MNSure [our Minnesota low income insurance mandated by the ACA*] and I have Medicare, we are two of the lucky folks who have landed in a place where we actually HAVE insurance. If we didn’t, if we had the fear of knowing most of our bills would go unpaid, or the pain of dealing with providers who wouldn’t see us because our insurance sucked, would we even be able to WEATHER this thing?”
Fortune Cookie Time
It was a searching question. The easy answer is, “Of course! I love you!” but when fear and pain come in the door, love sometimes slips out the back. Must have been that door god left open..
The Cost Of Fear
That same kind of fear can inhabit a teacher and ruin the chance for connection in class. That’s exactly what I felt during that last class, that some connection wasn’t being made, and the source of the broken wire was me.
The thought I’ve failed a student is one of the worst feelings a teacher can have, no matter what you teach. The fear that someone walks away from a class more confused than when they arrived haunts me when I teach. I felt that way in Houston, and I swear the mental anguish increased my physical pain 10 fold. I let my students down, and in a twist of timing my husband and Kathleen finished the booth teardown and came to “watch” the rest of my class.
Hell, I invited them, it’s usually one of my most rollicking, fun classes of a weekend!
But they entered right at a point where I felt a fool, and looked a moron, and my reaction was to cry. Like a tiny, diaper baby. Boo hoo. And I’d probably cry again, because, family lore.**
That was a low moment. But, true to the amazing generosity of the Houston Folks, they tried to make me feel a bit less terrible, and they did. And later that evening a lovely filet steak was placed before me, with thanks for my teaching, which was a very kind thing, thank you, HFF!
As I said, when I talk about my passion for teaching, sometimes I can get absolutely sloppy about my need to be better, my fear that I’m not good enough. One can see how this type of self criticism can become a comfortable cycle, so I won’t let it. My mom wouldn’t. Oy, It’s never a good idea to become your own best punching bag.
*Thank you Barack and Amy & Al & Mark. Our former president and current and former senators & governor have made my life possible, I am grateful. I have NEVER felt more fortunate to live in Minnesota, I only hope our family can pay this amazing state back for everything they’ve given us in the past 12 years!
**It has long been acknowledged in our family that I can, indeed, cry easier than I can piss.
I’ve had a lot of folks writing to me — thank you! And many comments on this blog and on FaceBook with supportive messages. One of the most common lines of interest is,
“How did you get through so much pain and NOT realize something was terribly wrong?”
Pushing Through The pain I’d been experiencing since a mid April fall on an icy sidewalk in the St. Paul Target parking lot had been steadily growing. And I don’t think we can discount the effect of so many TV ads where folks are running their businesses, being moms, picking up huge pieces of sheetrock, etc., and PUSHING THROUGH all because they’d discovered the magical pill/cream/electronic until that will allow them to WORK AT TOP CAPACITY.
I was one of them. At first I thought, “It’s just a pulled muscle, a strain!” and visited my doc to make certain I wasn’t too banged up. I have a history of fibromyalgia, and I spend a lot of time working on my feet. With fiber fair season (late Spring through early Autumn) coming on fast, I needed to be at my best for the yarn dyeing, traveling, booth setup and teaching that were on the horizon.
And I’m used to PUSHING THROUGH. It’s my signature move, my ace in the hole, my super ability to just keep working harder than anyone around me. Or, at least that’s what I thought. And I suspect it’s what many of my companion small-biz-owners also think (looking at YOU, Kathleen Pascuzzi…)
But maybe it’s not always so good to be the one pushing through… Maybe we need to reclaim our bodies. Maybe it’s not such a stellar thing to “John Henry” ourselves against a machine? Maybe these are questions I should have asked a while ago. Maybe instead of asking questions, I should have been listening to my body.
More Weight From April through May the pain only increased. But my work load was increasing and I was finding my self so exhausted that I was making stupid mistakes in my work. Especially noticeable was an incident at Shepherd’s Harvest in Minnesota on Mother’s Day when the kids came out to help tear down the booth.
The wheel came off one of our hand carts and I did a mad dash to grab hundreds of pounds of falling grid wall. Not my smartest — or finest — hour, and I did some serious damage at that point. To what, I had no idea.
Portal To Where? My medical center, Health East, has a portal system that’s become very familiar to modern patients in the US. I don’t know if other countries use this kind of system, but because of HIPAA (privacy in medicine laws) the only way to interact with my providers is on the telephone or through the portal.
Since developing Fibromyalgia, I’ve had difficulty with audio comprehension on the phone. Any time I speak with a person whose verbal rhythms are new to me, I get terribly confused. Not the state of mind to be in when discussing medical issues.
Emails are verboten as “too easy to hack”, so I’m stuck with the HealthEast portal, known as “My Chart” But I’ve yet to meet a portal system that isn’t a bit kludgy. Someday we’ll look back at this era of internet communication the same way we laugh at Monty Burns hollering, “Ahoy! Ahoy!” down the telephone tube.
Still, the HealthEast system is as good as any, and better than most, and I am the oddball patient who actually USES the system to message my docs to discuss treatment. In my current situation, that has been incredibly useful. Sometimes being a Virgo has it’s positive sides (better than the usual Virgo effect of driving away folks who DO NOT stack their pencils by size and hue.)
I began a correspondence with Dr. H, my Primary Care Physician (PCP), and together we tried to figure out why this terrible pain in my back and chest wasn’t getting better. The chest pain felt like my entire upper lung area was on FIRE, and any kind of movement would bring waves of hot pain.
My lower-back pain area, a strip straight above my bum, about 8″ high, made any kind of movement excruciating. Adding to that was a sense of pure exhaustion that I’d been fighting for many months. Reading back over those early email exchanges and remembering my sessions with Dr. H, I can’t imagine him doing more to get to the bottom of this mystery. I like my PCP; he’s a nice guy, and I also feel that he’s careful and persistent, he did well for me, but this was a diagnosis that had to unfold.
Happy Mother’s Day! After Mother’s Day I was a mess, but as I discussed above, every TV ad told me that all I really needed was a patch or a pill or a TENS device and I should be able to push on.
Plus, Kathleen shouldn’t be put in a place to pick up the slack. After the heavy work that was Shepherd’s Harvest in early May, Kathleen and I decided that skipping the Kentucky Fiber Festival would be prudent, and it was probably the best decision we’ve made all year. She was hurting from various bronchitis / colds / conjunctivitis annoyances, and I just plain hurt.
My family — in a very REAL WAY — depend on me, on my strength, on my BACK. I was hoping that by skipping a show I would give myself enough rest to heal. But there isn’t enough “rest” in the world to “heal” from Stage 4 Lymphoma.
The physicality of my job is more similar to the hard graft of Grandma Modesitt’s job at White Star Laundry than any job I anticipated upon my graduation from college. I love what I do, but isn’t a large part of WHY I went to college was to NOT work myself into an early grave with physical labor? Actually, that was to avoid becoming a lathe operator at an auto plant in Toledo, never mind…
Having said this, it’s not that hard physical labor caused this cancer, I have no idea what has caused it, but my stick-to-the-job attitude certainly made it more difficult to step away from my responsibilities and ADMIT that something was seriously wrong.
So Push On I Did I hadn’t put my symptoms together, but they were related. Heightened sensitivity to sound and light (loud noises, especially high pitched ones) had also entered the picture, but I kind of chalked that up to being — once again — an uptight Virgo who couldn’t stand noises that were outside of my control. Noise is SO bothersome to me, I’ve just come to expect folks to think I’m an oversensitive woman who hates experiences outside of my norm. But this was different, this was worse. This was sound being sent straight up my spine through the tumors in my neck.
Forgive Me? We DID make it out to Ohio for the Great Lakes Fiber Show, and one evening while there we went to dinner with Jan & Dale, some fiber friends from PA. Dinner was arranged at a bar-be-que joint, and it wasn’t suiting me well.
The restaurant was bright, loud, a bit hot (EVERYTHING was hot that weekend) and I felt like a terrible guest. Not able to get comfortable, not able to be satisfied, just stretched tight like a rubber band. That was a moment when I knew that something serious was going on inside of me.
And I felt so guilty about it. That’s what being ill is like for me, feeling SO DAMNED GUILTY that I’m causing folks to change their routines to accommodate my stupid sensitivities.
But I’m at the point of beating myself up for having Cancer. And I digress…
Sharing The Work May moved into June and my pain worsened. Layla, my dye assistant, began taking on more of the physical parts of our job. She was the tub filler and wringer, I was the dye ‘dabber,’ and if you purchased yarn from us in June there’s a good chance it’s run through Layla’s lovely hands.
Perhaps Layla, more than anyone else (except for my highly observant business parter, Kathleen Pascuzzi,) saw how debilitating this pain was to me. She told me she was worried, I told her to find something more useful to worry about. Such a lovely girl, and I pooh poohed her concern.
After a hard day on the road over the past few months I would sometimes confess to Kathleen that “something” felt wrong, and it scared me. But as the wife and caregiver of a long time bone-marrow cancer sufferer, we don’t throw the C-word around very easily. My feeling that “something is not right!” should have been heeded, by me at least.
But I missed my Miss Clavell moment(nod to Madeleine fans) because I was afraid of being a medical drama queen (or, in my case, a medical drama president as I am a anti-monarchist…)
Estes Park With June came a long road trip to Colorado for the Estes Park Wool Market where I was teaching a bunch of classes. Kathleen and I had chosen to bring our husbands, Tom & Gerry (of course those are their names…) to enjoy the gorgeous scenery and give us all a mini-vacation. We stayed in a small, but lovely 2 bedroom cottage and while the boys investigated the area, I taugh,t and Kathleen womanned the booth.
But I was insanely exhausted. Sick, suffering, barely able to move. I chalked it up to altitude sickness, but I kept telling my students, “This feels SO MUCH WORSE than it usually does when I’m in Colorado.”
A short 2 months earlier I’d been to the Interweave Yarn Fest in early April, but the sickness didn’t feel quite as bad, and I chalked that up to the 2,500 feet difference in altitude between Loveland and EP.
The main memory of that weekend is exhaustion, and — once again — a sense of disappointing the rest of our group with my inability to even get up the energy to go to a restaurant.
Rocky Mountain Low Stopping at a recreational dispensary on the way up to Estes Park I purchased my favorite Buddha Bar (peanut butter and weed, perfect together…) but the satisfaction and relief I’d come to expect with my Fibromyalgia pain wasn’t forthcoming. My ‘Colorado Candy’ failed me, and that struck me as odd, too.
Right around this same time a customer of ours who has pain issues recommended CBD oil, so I had started taking that to ease what I thought was muscle strain and the WORST Fibro flare up I’d ever experienced. There was relief, but nowhere near what I’d been expecting, and I filed this away too as something to consider.
I began to feel hopeless, and thought I should talk to Kathleen about ending our partnership because I was feeling like so much dead weight, and she was taking on SO much more physical labor that I wasn’t able to provide. I love working with Kathleen, I love our business, and THAT was a very hard road to contemplate.
Pondering In My Heart Although I identify now as an atheist, I was raised a Free Methodist and, BOY, did we do a lot of verse memorizing each week. My family was fond of the King James version of the bible, Revised Standard didn’t enter our home until 1973, so my childhood memorizations are filled with “thees” and “thous.” This stood me in good stead in my college Shakespeare classes, I had a bit of a leg up with the Jacobean stylings of Mr. William S.
In fact, when my Grandmother (who was born in 1893) received her bright, shiny new RSV in 1972, she confessed to me, “Oh, Annette-y, I don’t know why they had to go and change it, they should just leave it, just the way that JESUS talked!”
I didn’t tell her that she probably wouldn’t enjoy a New Testament in Aramaic. I was 11.
So I kept all these things, and pondered them in my heart. Just like Mary did in Luke, chapter 2.
But I wasn’t growing a tiny little savior, I was growing a tumor that was ripping into my spine and creating so much pain and exhaustion that there were days I thought it would be nicer to go to sleep and just not wake up than face another day of loading yarn, selling skeins or trying to teach folks how to cable without a cable needle.
All things, it should be noted, that I LOVE to do.
And, just for yuks, here’s my OWN tutorial for Cabling Without A Cable Needle. Enjoy!
It seemed like a good idea at the time; try out a bunch of new shows (Iowa, Yarn Con, Houston) and stick to some old favorites.
Our schedule included The Michigan Fiber Fest (Aug), Wisconsin Sheep & Wool Fest (Sept), North Country Fiber Fair in South Dakota (Sept), an October meeting of the Minnesota Knitting Guild in St. Paul, SAFF in North Carolina (Oct) and back to Minneapolis for VK Live (Nov) Kathleen and I bit off a LOT of travel for late Summer.
However, I’m facing the reality that this will not be happening for me.
Disappointing is way too shallow of a word for the deep, deep well of sorrow I inhabit.
I live for these shows. I love seeing our customers, our friends, our reward for the hours of hard work I put in alone, the extrovert yang to my introvert yin side.
I had figured that after Houston Kathleen and I would have about 6 weeks to prepare for the second half of the Summer. And I was obviously still in denial that there was something remotely serious going on with my health, even with all of the warning signs I’d been feeling since April, or even as far back as last October.
So I figured that I had the entire month of July to rest and ready myself and dye a bunch of yarn for upcoming shows.
Little did I know that instead of resting, I’d be writhing. Because, Cancer.
Allow me explain using the language of color and dyeing that’s become my lexicon for the past 5 years.
MY BACK is split, literally, into pieces and my spine is cracking with a large tumor that was growing free and unstopped within the T10 vertebra; it’s a dark red pain, rich and full and velvet, but also lumpy with extra bits of unground pure pigment. Thick, viscous pain.
MY CHEST and underarm area is permeated with lymph nodes, swelling and soft and tenderly painful, individual lumps of light, pale, soft, half-cooked dough with a peppering of dark grey. There’s a bright garlic sting, a shine of neon-yellow, in the center of each swelling and, if bothered, they explode into eruptions of glowing torment.
MY NECK has a gaggle of tiny sarcoma floating around in the back, each one acting as a teensy sound amplifier.
When a high pitched voice, the squeal of hospital cart tires on linoleum, a wailing oxygen sensor alarm breaks the silence by my bed, these rock hard little jewels light up and send that sound directly into the top of my skull, spine and jaw as an exquisite, thin, light pink flush of opal misery.
These three separate areas of metastasis were what alerted my docs that I do, indeed have cancer. A needle biopsy under my right arm on Tuesday, into one of those tender little gnocchi of suffering along my chest, was what was required to determine origin.
The source of the cancer is one of the most important pieces of the puzzle. It felt as though I spent most of Tuesday, Wed & all of Thursday swaddled in the fallopian tube of an MRI machine, wrapped in warm white blankets with earphones and a contrast drip while they searched through my organs and bones for some sign to tell them more about my “Cancer of an Unknown Primary”
The waiting period for that diagnosis was wretched. My biggest fear was that the culprit would be a solid mass tumor in a yet uncharted organ. Liver, I thought, would be worst. Colon not so great, either. As each organ was observed, photographically sliced and metaphorically grilled (with a fava beans and a nice chianti) and rejected as the Primary, I sighed with relief, tapping my foot, waiting for the biopsy results.
FInally, late on Friday the initial diagnosis revealed:
Diffuse large B-Cell Lymphoma, Stage 4
It’s a very violet diagnosis, don’t you think? It’s only initial, but it’s oh-so-HOEPEFUL!
Nuke Me ‘Til I Glow / Let me Rest so Health will GROW
I will NOT be doing any dyeing in the near future. (And, if I have anything to do with it, I won’t be doing any DYING anytime soon, either!)
And I won’t be visiting any yarn shows or fiber fests, and I will not be teaching any time in the near future. Not only will I NOT have the energy or physical ability, but I need to dramatically reduce my association with the masses because my immune system will be shot.
Aside from the physical barriers I’m dealing with right now, I can already feel my sense of humanity —Self?— draining away. After only one week of radiation I am tired, foggy, absolutely exhausted and confused. Of course, that confusion is also due in part to the to the head spinning rapidity of the events of this week and the liberal use of opioids which allow me to successfully pretend there’s not a gigantic tumor sticking out of my back.
TREAT THIS, MF’er!
So here’s an outline of the plan of my treatment, as it stands, and it will change. These things are never carved in stone.
The first, most immediate step was to immobilize my back so that the tumor that was causing the cracked vertebra wouldn’t create more damage, and so that I wouldn’t bend over in some odd way and cause ‘catastrophic damage’ to the spinal cord.
Death Star Valkyrie
A huge, white back brace was built for me in a day, and allow me to tell you that IT IS STUNNING.
Like a Valkyrie rising high above the stage in the incomparable Death Star Production of The Ring Cycle, I glide through the hallways of St. John’s Hospital in Maplewood, MN like a slowly moving diva.
Or, this halloween I’ll make Gerry a wiffle bat costume, and we’ll be a matched set.
For the past week I’ve been undergoing radiation to shrink the tumor on my spine. This will continue for another week and a half, and at that point they’ll assess the situation to see how successful it’s been.
After a short break for some more testing (Spinal Tap, anyone?) and to let the radiation “settle” I will begin a course of chemo therapy to work on the lymphoma. All while wearing this spectacular brace. How could a girl get any luckier?
Gerry realizes he already IS one lucky guy because he snapped me up (and got that $5 ring on my finger!) 25 years ago this Aug 21. We are lucky we met, and lucky we’re still here together.
Hell, I’m damned lucky that last Sunday, before I entered the hospital, I tried to manually raise the garage door on my own. It could have gone very wrong, I could have snapped my spinal cord. Literally,
I am VERY LUCKY. Ever since we fought against, and found peace with, Multiple Myeloma in Gerry’s 12 rounds (and counting) we’ve considered ourselves one of the luckiest families on the planet. That luck holds. The good news is I only have to wear the brace when I’m walking for any distance or up and down stairs. And for Sunday and Wednesday matinees.
The chemo will be tweaked to determine how often I need it, how much I need, how much I can take and all those other mysteries of medicine. And I guess after that I just keep doing what they want me to do. And, most important, I think I get to go home today. It’s been a week, I’m ready.
They told me to expect my port to be in for about a year, chemo could run shorter or longer than that, there are still SO many unknowns that making any kind of guess about duration and depth of treatment would be a fool’s game.
In Minnesota, the last weeks of August have a crispness, especially in the morning, that is so delicious, it’s as if you could drink the air. It’s the start of my favorite season!
Since we first married Gerry’s said that as late Summer rolls around I start getting geared up for something different, NEW, to happen. He says I always seem happier when there’s a change happening in the Fall, so this year should make me VERY happy!
GET OUT OF THE HOUSE, KIDS!
The first main change is that Gerry and I are officially empty-nesters.
Both kids are firmly ensconced in their respective colleges, settled into dorms and preparing to start classes.
My business partner Kathleen and I drove Andy back to Earlham College in RIchmond, IN on our way to the Michigan Fiber Festival, where we’ll be returning next year, we loved it SO MUCH!
Every time I drop Andy off at college, I can’t believe how much I miss her – you’d think it would get easier, but it doesn’t. I’m proud of her, I love her so much, and I’m happy that she’s happy at college. But dang, I miss her.
ModeKnit Yarn; On The Road Again!
While we were in Michigan enjoying an AMAZING fiber show (if you haven’t been to the Michigan Fiber Festival in Allegan, you should put it on your ‘fiber shows to visit’ list – it’s just wonderful), and avoiding tornados (we spent an hour in a basement waiting for the all clear), Gerry was driving Max up to U of Minnesota, Morris for his Freshman year.
This was something I was pretty shattered to miss. I really wanted to take Max to college for his first year, but circumstances made that impossible.
We’ve sold our house (about a month ago) and found a new one over by Lake Phalen that is a perfect size for us! Three bedrooms, but not huge ones, so it will be great for a kid home for the Summer.
The rooms are small enough to be temporary, large enough to be guest bedrooms/offices.
I may even have a sewing room for the first time, which would be amazing!
Our new home is actually a LOT like our current home; the layout is very similar, it’s a craftsman bungalow, approx the same age.
New House Stairway
Although we were hoping to find a home with bedrooms on the ground floor, the stairs in our new home are wide and not deep, thus easy to walk up.
This hasn’t always been the case in our current home (I’m SO tired of ducking as I go down stairs!) so we’re very happy. The decision, ultimately, was up to Gerry, who said he liked this house quite a bit and felt good in it.
The GARAGE! Double bay is my new workspace! More pics after the move in!
The most AMAZING part of the house, though, is outside. Although the house is around 100 years old, the garage was just built in 2012 and it’s huge. It has three bays, two of which are currently being used as a workspace for the current owner, a skilled furniture craftsman. The garage is heated, and it will be an amazing workspace for ModeKnit Yarn!
The idea that I can dye yarn in a large, well-lit space (NOT in a basement!) just steps from my back door will be game changing! Right now our dye studio is, essentially, my basement. It’s been great for the first few years, but we’re growing now, and having more space is exactly what we need! I’m looking into used restaurant kitchen tables (metal topped) for the dyeing, we’ll be putting in a sink and we’re also looking into a portable water heater so we don’t have to run a hot water line to the garage.
FRECKLES! Toad Lily, Freckled Iris, Betty Confetti & Community Clinic & A Lovely Thing
It’s been a Summer of work; painting, packing, showing the house, and now more packing and a final push of throwing things out! We’ll be getting a dumpster to rid ourselves of large items we’ve amassed over the past 10 years.
I won’t be in town for the actual closing on our houses, Gerry will have to get by with a Power of Attorney, acting on my behalf. Once again, I’ll be away at a fiber show, feeling as if I’m ignoring my domestic responsibilities, but knowing that business obligations are important, too. It’s been a season of feeling torn.
We’ll be in Wisconsin, Teaching & Vending Sept 8-11.
It worries me that I won’t be here. Gerry’s been working hard, packing smaller stuff all over the house, but the larger stuff in the basement and garage will require more muscle than he has available, so we’re hiring the movers to come out a few days early to do some basement and garage packing.
Fortunately Jack, a good friend whose wife, Robin, is one of the most amazing knitters I know, will be hanging out with Gerry on the day. Jack will accompany him to the closes and PREVENT him from jumping in and trying to do what we’re paying the movers to do. Thank heaven for friends – have I mentioned how guilty I feel about not being here on the day?
So for the next two weeks I’ll be dying up yarn to fill orders (we’re getting more and more wholesale customers, bringing them in as we feel able to accommodate them) and packing up all the tools of the dye studio.
If you’re in St. Paul and will be around over the Labor Day holiday, we may just have a “packing party” and barbeque, clean out the fridge and get some final items packed up!
It’s been an incredibly busy time for the past few weeks; ModeKnit Yarns had five shows in four weeks, and all the travel that entailed. Setting up the booth, standing around selling the yarn, breaking down the booth and driving to the next location are actually pretty enjoyable physical activities, but coming right on top of each other bang-bang-bang it was a hard thing.
Leading up to our time away and our local shows was a few months of intensive home fix up (all of it catalogued under the hashtag #HomeSaleFixUp if you’re interested) so I was already running on fumes.
Adding to that, while on the road we acquired three new wholesale accounts (yay!) which meant a lot of dyeing when I returned home (yikes!) Add to that a bunch of new orders (yay!) which also meant a lot of dyeing (yikes!)
We also acquired a new kitten (well, it’s Andy’s kitten from school, and it is FEISTY!)
Yikes because we’d cleaned up the basement dye studio pretty nicely, and every time I dye down there I spend almost as much time setting up beforehand and cleaning up after. But we have to keep the home ready to show at any time, and that includes the basement!
So I just finished dyeing almost all of the items on our ongoing, “Orders To Fill” sheet. (In our business, Kathleen receives the orders and then fills the sheet so I can see exactly what needs to be dyed, and then I dye, set, dry and skein the yarn to fill the orders)
Right now there are a few items I can’t dye because we’re having issues with our knitting machine
In the past year I’ve broken two yarn feeders in the carriage (one by dropping the carriage about a year ago, the other by pushing the carriage to hard.) I’d come up with a solution to glue the piece back together using superglue and rayon ribbon, and it worked for a few days, but it was never a permanent solution and now it’s watch is done.
So about 5 items from various orders are waiting for a part that should be arriving on Tuesday, then I can knit up more fabric and fill the waiting orders. And I plan on ordering a few spare yarn feeders because I’ve discovered it can be an incredibly fragile little plastic piece, and practically impossible to fix once it’s broken.
What I HAVE dyed in the few days, though, is amazing. I’ve dyed the equivalent of 240 skeins of yarn, most for orders, but some of it for our stock. And now that the last batches are in their citric acid baths, I’ve changed out of my dye clothes and into something dry and cool, and I’m engaging in one of my guilty pleasures; binge-watching ALONE on the History Channel, and enjoying my indoor plumbing, running water and beautiful home!
I think I’ll ask the kids to wring out the yarn and hang it up. They should be good for something, right?
Speaking of the beautiful home, we’ve had a lot of interest, a lot of visitors, and a few return visits. The house has a LOT going for it, but two things we can’t change are the fact that we have a one-car garage, and we live on a busy street. Those two things could be non-starters for a lot of folks, but I feel confident that we’ll find the perfect family for our lovely home! We’ve certainly been very happy here for the past 9 years!
I’ve also been able to get out on my bike every day or so, which makes EVERYTHING better. I have a presentation to prepare for The Knitters Guild here in MN on Tuesday at the Textile Center. I’ve got all my props set and everything written out, now I just need to make it smooth by rehearsing it a few times.
After this presentation, I’ll have nothing immediate on my plate until Stitches Midwest in August, except getting this home sold and finding a new one…
I haven’t blogged in a while because I’ve been SO incredibly busy!
Living & Dining Rooms
A combination of getting our home ready to put on the market, and preparing enough yarn to see us through a bunch of online orders that came in (yay!) and SIX fiber engagements (5 fiber fests & a trunk show) in 6 weeks across six states meant that when I had a few spare moments I was generally using them to take care of personal activities like brushing my teeth.
Who knew time for flossing would become a luxury!?
Universal Catherina by Myrna Stahman at Shepherd’s Harvest
So ModeKnit Yarn partner Kathleen and I did a few shows in MN (Yarnover by the MN Knitter’s Guild and Shepherd’s Harvest out in Lake Elmo) and had an amazing time!
We have begun to divide the work in a better way; I dye all the yarn (which means also doing all the blank knitting for our FLOW colors) and I do the skeining.
Andy’s Always With Us!
Kathleen handles the sales & marketing, shipping orders and staying in touch with wholesale orders and club customers.
Kathleen also makes up the mini skein sets, and puts our kits together. She gets to see a LOT of Andy (in pattern photograph form.)
When it comes to traveling, Kathleen does the lion’s share of booth planning, packing and loading our trailer, I help set up the booth and help deal with customers, and at some shows I teach (which generally brings in more customers from among my students!)
Drying Yarn for Yarnover
I do most of the driving and planning our hotel accommodations, Kathleen handles the interactions with the show producers & handles filing our tax info for out-of-state sales.
So suffice to say that BOTH of us are pretty ragged right now! It’s a testament to our friendship that after all of this work, and all of this driving, a week into our trip we’re still giggling and having fun!
Happy Sheared Sheep at KY Sheep & Fiber Show
After the Kentucky Fiber Show last weekend (what a sweet, well run and friendly show!), and an incredibly joyful stay with a good friend of Kathleen’s (THANK YOU MIMI!) we drove up to Columbus for a trunk show at 614 Knit Studio, which was AMAZING!
614 Knit Studio Trunk Show
614 Knit Studio is such a lovely shop, if you’re in the general area, it would be WELL worth your while to stop by and have some knitting time!
614 Studio had an INSANE accident a few weeks ago when a car drove through their front window. No one was hurt, miraculously, and we’re in awe that Andrea has her shop up and running again so quickly!
Our nod to 614 Knit Studio’s recent auto incident…
We arrived on Tuesday, set up a trunk show, hung around to sign some books and just watched the yarn fly out the door! We also had some of the best take out Chinese/Malaysian food we’ve ever had – Buckeye Asian, we love you!
On Wed (Today!) we drove up to beautiful Vermilion, OH for a few days at a lakeside motel, just hanging out and enjoying the shallowest of the Great Lakes.
Toes In The Sand
Lake Erie was a disaster when I was a kid, polluted and terrible. We could swim, but we had to hose off, and we never ate the fish we caught.
Then it got MUCH cleaner – yay! – but now, because it IS so shallow, it is susceptible to alge blooms. We’re here before the ‘season’, while the water is still pretty cold, so alge’s not an issue, and the water is so much clearer than I remember from the Summers of my youth!
I LOVE this show, I used to teach at it about 8-9 years ago, and it’s been a long time since I’ve visited! We’re both looking forward to vending there, and I’ll be teaching three classes (Combination Knitting, Knitting with Beads & Mad About Plaid) so come on by and check out our yarn and my crazy teaching!
Andy in Weaving Class at Earlham
After Great Lakes, we’ll head over to Richmond, IN to pick up Andy from her May-Term at Earlham, along with her new cat, and ModeKnit Yarn (aka, the Joad Family) will travel back to St. Paul to prepare for the Zombie Knitpocalypse next weekend and my talk on Color for the MN Knitter’s Guild later in the month.
ModeKnit Yarn on the road!
Did I mention that Max’s graduation is next week, my 90-year old mother-in-law is flying in for it, and my knitting group will be meeting at my (on the market) home.
I’m looking forward to July, when things slow down…
Oy, what a two weeks I’ve had! Perhaps the hardest two weeks in my professional career, and also the most satisfying!
The Pascuzzi-Mobile, Ready To Roll!
First, this was preceded by a few months of hard graft; one show after another, one teaching gig after another, personal trips that don’t bear mentioning (but were a bit fraught) and LOTS of yarn dyeing.
The two weeks started with the final touches of readying yarns for Interweave Yarn Fest, last minute dyeing and skein making. Work, work, and more glorious work!
Then the drive out to Colorado. I love driving, I was thrilled to drive out. It’s something I do well, and I really enjoy the feeling of the wheels on the pavement. I think it’s my own type of meditation.
Wire Knitting While Waiting For ZZ Top To Fix Our Flat
But it is a bit tiring, that long, hard focus. Especially across the high plains – lots of trucks, lots of tumbleweeds, and almost an entirely uphill drive.
Once in Colorado the shift to upper altitude didn’t kick in immediately, which was great because my first day there Kathleen, the other half of ModeKnit Yarns, and I had to set up our booth in the Yarn Fest Marketplace.
The following day Kathleen womanned the booth while I taped two classes for Interweave Craft Daily.
Interweave’s AV Guys
It’s always a lot of fun to work with the IK video crew, they’re sensational guys!
A morning off, which was necessary because by now the altitude had caught up with me and I needed some reset and hydration, then full-on teaching for four very full classes, LOTS of selling in the marketplace, and general fun with other yarn folks!
We tore down the booth on Saturday night, packed up, and after teaching one last class on Sunday morning we started our drive back to MN. I drove, because I love it, and we were home in St. Paul by Monday afternoon. Huzzah!
I slept for half a day, much needed, then Tues, Wed & Thurs were dyeing days.
Yarn Fest was sensational – we sold out of several of our yarns (we returned with only FOUR balls of ModeSock Flow!) so I was trying to fill up our yarn coffers before the wonderful Minnesota Knitting Guild’s yearly event, Yarn Over!
Yarn Over has a very special place in my heart. It was at Yarn Over in 2006 that I began to hatch my plan to move my family out here to MN. It’s a move I’ve never regretted, and I feel I owe a great deal to Minnesota (including my husband’s continued health – thank you Mayo Clinic!)
The kids have thrived here, life is very good for families here, and I think all of us felt less pressure to live up to a certain perfection of appearance and lifestyle we may have felt in NJ (which we also love!)
Today was Yarn Over, and once again it didn’t disappoint!
Mini Skein Sets
What an amazing gathering of fiber and yarn loving folks, crossing all skill levels, ages and genders. And we sold out of several of our yarns again. We return home with all of our 221B and Dragon Dances miniskeins sold out, with just a few of our Caledonian Colors, Knitting Dead and Midwife Speaking left. And a TON of orders to fill in the next few weeks. This kind of busy I’ll take any day!
This feels amazing.
We have had good fiber shows in the past year (ModeKnit Yarn’s first fiber show was actually 2014 Yarn Over) but these last two weeks have exceeded all our expectations. SO much work, and SO much reward!
THANK YOU to all of our customers, to everyone who took the time to stop by our booth (even if you just looked or commented!) and THANK YOU to the staffs of Yarn Fest and Yarn Over. Your own hard work is GREATLY appreciated by this fledgling yarn dyeing company – we’re very grateful!
I’m sitting in bed in a beautiful room in Colonial Williamsburg, the sun streaming through the shutters and limning the rocking chairs on my balcony with a morning glow. It’s glorious, and I’m very grateful to be here!
This weekend I taught at a brand new retreat, History Unwound, and it was one of the nicest teaching experiences I’ve had in a career of lovely teaching engagements.
Starting a retreat from scratch is one of the hardest things for a knit person to do. Kimberly Villareal (Somebunnyslove on Ravelry) put this together with the help of her husband, Chris, various helpers and volunteers (primary among them Trish – ElizabethsMommy on Ravelry)
One of Donna D’s beautiful mittens from her upcoming book on Lithuanian Knitting Traditions.
I admire Kimberly’s ability to have a vision, make a plan, and find a way to make it happen. She acquired sponsors, found folks to supply and create goody bags, went after some excellent teachers and lecturers. She presented an amazing array for her guests!
I felt so flattered to be teaching alongside Anna Zilboorg,Franklin Habit and Donna Druchunas, three knitting ‘greats’, as well as Rohn Strong, Beth Smith and Sharon Hilgers, three folks I did NOT get enough time with! I swear, Rohn MUST be related to me somehow, he is the spit and image of many of my cousins, a red-headed version of my late brother!)
The retreat was exactly what one should be – a chance for folks to gather, take classes, shop for some yarn and fiber related items (I bought a change purse!) and, above all, RELAX and recharge the batteries!
If I felt relaxed and recharged after teaching for 2 days, I can only imagine how good the students must have felt!
I hope this is the first of MANY History Unwound retreats! It’s such an excellent idea, and there are so many interesting historical and fiber related locations where future retreats can be held!
“See, Apple’s in the slammer, but Little Pear’s got the cabbage to spring Apple (that is, if Officer Donut don’t get too greedy!)”
I would advise anyone who is interested in this type of event to ‘like’ History Unwound on Facebook so you can stay on top of developments for future years. I feel SO fortunate to know Kimberly, and to have had a chance to be part of this delicious event!
And NOW I get to fly home, to see my favorite place in the world (wherever Gerry is) and to see my daughter! Andy’s home from college for Spring Break, and having both she and Max home is so joyful to me! I’m a lucky, lucky woman!
My flight doesn’t leave until this afternoon, so I’ll be able to do a bit of exploring before I head out. Or maybe I’ll just find a beautiful location and sit and knit! Exhaustion has hounded me this Winter, more than it ever has before, and it’s been worrying.
Colonial Annie On A ‘Hobby Horse’ Bike
I’m certain that it’s partly due to an increased travel schedule. This marks the 5th long trip in 2 months for teaching or selling yarn. Winter’s are always hard on the Fibromyalgia, but this year all of the travel has doubly sapped my strength.
That’s why I’m so psyched to get home, to get back on my bike again and work out the kinks. Riding my bike really DOES energize me in a way nothing else does. Immediately after a ride I’m wiped out, but within a day or so, I begin to feel the positive effects on my stamina.
This weekend I had moments when I was absolutely overwhelmed with exhaustion and pain, which is why the opportunity to sleep in today, rest in bed while I write a blog post, and just sit in the sun and knit are moments to be treasured. And I do. I’m a lucky woman.