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!
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.