Is it Just Me, Or Is It Painful In Here?

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.

Reenactment

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.

GUILT
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.

Murmurings of Pain

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!

From Caregiver to Patient

For 2018 Kathleen and I had decided that the ModeKnit Yarn calendar should be really crammed.

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.

Plum Jasper

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.

Carol Peletier

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.

Rose Quartz

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.

Victorian Valkyrie

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.

I am terrified, but I am ready.