I’ve Been Heard

Yesterday Gerry, Andy and I went to “Chemo Class” and learned about things to watch out for during my chemo (which starts on Monday, Aug 20 – our 25th Wedding Anniversary…) and get details on the average Chemo day, tips on dealing with the nausea, etc.

It was a good and helpful 40 minutes given by a pharmacy student and a nurse, very well done.  Thanks, HealthEast!

THEN my nudging and — yes, complaining — reaped the benefit of a meeting with two of the head honchos from the St. John’s Cancer Care Center AND my navigator (who is worth her weight in gold!)

We discussed the issues that had been bothering me, and to their credit they didn’t just pass along, “Oh, yes, we will DEFINITELY FIX THAT!” happy talk, but we had a REAL discussion about how the dynamics of the center are changing since the merger with Fairview, the drawbacks of staff shortages (and why it’s hard to just go off into a private room with a scheduler to comfortably set up my appointments.)

The discussion was good, honest, and I’m hopeful that if immediate results aren’t forthcoming, it won’t be for lack of notice or trying.  All I really ask is that they begin to SEE what could make the experience better for the patient, and seeing, begin to act.

So I WILL be getting my Chemo next week at St. John’s.  Then I have 2 weeks “off” during which time my doctor seems to think there’s a very good chance that I’ll need transfusions (the chemo I’ll be on is going to be pretty hard-core, Gerry found an article about it where it’s called, “R-CHOP” and it looks – daunting.

Gerry’s hematologist at Mayo, Dr. Sue, has become a personal friend of ours over the past 12 years.  We LOVE seeing her, we share a lot of sensibilities of East Coast Jew-adjacent folks and we laugh like nuts when we’re together.

Last November when I was absolutely knackered Sue picked up on it, and was a bit concerned when twice in a row I was permitted to give blood (my habit had been to give blood every 3rd month while Gerry was getting his own samples drawn) because  of low hemoglobin levels.  Instinctively, Sue knew something was up.

Sue has ALSO had her run in with Lymphoma.  The fact that our cancers intertwine between each other now seems bizarrely natural and familiar.

So Dr. Sue very much wants me to get a Mayo 2nd opinion, especially now that Stem Cell Transplant has been mentioned as a therapy to prevent return of the disease WHEN we are able to stop this nastiness in its tracks.

So during my two weeks off we’ll try to get me into Mayo for more testing.  We’re still looking into what this means in terms of insurance, and places where I might stay while in Rochester.  Financially we’re in a VERY different position than we were 12 years ago. At that point Gerry’s insurance, through his amazing union (IATSE Local #1) covered so much of our auxiliary costs (hotel room, food, etc.)

We’re NOT in that position this time, and 12 years of Gerry being disabled and me earning never quite as much as I’d hoped each year has put us on the back foot.  So we’re looking into Hope Lodge and other places/schemes whereby I could stay in Rochester for my one week on with Chemo, then back to St. Paul for my 2 weeks off.

And THAT is scary, too.  What if, while I’m home in St. Paul, I get complications.  This is all too big right now to take on in one swallow, I need to cut it into bites and digest it, which I will.

Gerry, who is the best human being I could ever be married to, has been thrown for a loop by this.  He is so helpful, so wonderful, but I also find that he’s oddly paralyzed by the idea that I have a disease that will be rocking his world and perhaps shattering it, too.

So I look to him for help that he is having a hard time giving.  And I have to realize this; Gerry is NOT Superman, even though he’d like to be.  Andy is wonderful, but learning the ropes.  The navigator at Health East is almost magical in her ability to understand and help, would I be able to find a social worker in Rochester who could fill this role?

All this is part of breaking down the problem to make it manageable.  Who knows, maybe Mayo will say there’s nothing they could do that HealthEast isn’t.  Maybe they won’t want to take me on.  Maybe my insurance makes this whole thing moot.

Stay tuned.  I hate having this cancer, I hate it like poison.

But I do love a challenge.

I could use a Knit-Along, how about you?

I was gifted with some Qiviut yesterday, and I’ve been stroking it and loving it ever since.

I generally don’t knit up stuff for myself, JUST FOR ME, especially not in such a luxurious yarn. I try to use our own ModeKnit Yarn when I knit these days, but—c’mon—Qiviut ?  This is very special.

I’ve been told by my Med Onc, that I’ll be losing my hair.  I’m debating allowing Andy to just go ahead and shave it, it’s pretty short already, but my condition will be that ANDY will have to be my Sampson and will NOT cut their own hair.  It will make me so happy to see lovely, rich, deep auburn locks growing while my own bald pate is shining with Dex-induced fever sweats.

But I will need some kind of head covering. If nothing else, for the AC I’ll be in the rest of the Summer, and my chemo will be going FAR into the Fall and Winter and perhaps Spring of 2019.

SPLIT CABLE WIMPLE
Instead of a hat, I think I’m going to knit up a cowl and use it in various ways.  I love folding and twisting a cowl to create a sort of hat, and that will probably be the way that I utilize this beautiful Qiviut. Cowls and wimples are my go-to, I find them so useful, so this will be my Joyful Personal Knit for the coming weeks.

Would you like to knit along with me?

Buy Split Cable Wimple Pattern Now Via Paypal for $4.00

Be a NUN – or just look like one!

In all honesty, the pattern is NOT well reviewed (there’s only one 2-star review…) but it’s always been one of my favorites. There’s no accounting for taste, but I have met folks who’ve knit this up and have loved it.

It’s NOT my best selling pattern, but I love the idea of company to knit this together with me.  So if you purchase this pattern it before I start my Chemo on Monday, Aug 20, the price will be $4.00.

 

Blog Support
I’ll be happy to blog about the how my knitting is going every week or so, point out highlights and address issues that folks may be having.  It will be a nice change of pace on the blog from “Ow, I hurt.” or “Ish, I’m tired!”

If you’ve never knit lace, this may be easy enough to get you going. There IS a cable in it, and I’ll be happy to discuss my technique for cabling without a cable needle.  The lace work is simple and very repetitive, and once you get the first repeat you SHOULD be able to read your work and memorize the lace.  Or not.  I don’t like to put expectations on folks for their personal knits, I just hope this will be simple enough to be fun, and challenging enough to be interesting.

We could treat this as a casual, online class. I’ll post tutorials as I can, and you guys can share info with each other if you want.

How does that sound?

Buy Split Cable Wimple Pattern Now Via Paypal for $4.00

You can use WHATEVER fiber you want!  I’m using the aforementioned Qiviut, which is slightly heavier than a fingering weight.  I’ll be working it up on size 7US/4.5mm needles because that’s the drape I’m looking for, but with a cowl the beauty is gauge is NOT vital, so you can just aim for the lightness (or heaviness) of fabric you’re looking for and start there!

A note about lace: Do NOT fall under the misconception that because you’re knitting lace you’ll want to use HUGE needles.  I like to knit my lace on a needle that’s NOT too large for the yarn. If there’s too much space between stitches (which can happen with larger needles)

You get the pattern, you find some yarn, and let’s get going on Friday, okay?  See you then!

Diagnosis Update, And A Decision (?)

Today we met with Dr. N, my Medical Oncologist, who had the results of all the tests I was given last week (with the exception of the bone marrow biopsy results, which are still outstanding)  My new diagnosis is a bit more daunting than the original.

High grade b-cell lymphoma with MYC and Bcl-2 arrangements.

Doctor M called it a “Double hit lymphoma” and said that it is a “Particularly aggressive b-cell lymphoma.”

I’m still working my way through this, mentally, and have asked my doc to send me any written information that I can study.  He is a lovely man, and will take as MUCH time as I need and want to discuss it with me, but I don’t feel I can 100% connect with the information until I can read a bit about it.  We all learn differently.

The chemo is going to be more aggressive than originally envisioned, and this is the part where I think I may need to take my care into my own hands in a way.

So far St. John’s has been good, if a little uneven, with the quality of care.  But one thing that’s been a constant is the confusion on the 2nd floor, the main Cancer Center where I’d be receiving chemo treatment.

The staff seem to be loud and a bit aggressive with each other, but I may be misreading the room.  I don’t like loud noises, or loud voices, when I’m trying to work through something.  I don’t know how difficult it will be for me to insert myself into this environment each day for chemo.

Also, there seem to be odd misunderstandings. For instance, as I checked in today one of the reception staff asked if I had a port. I said, “Yes.”  Somehow that got translated to the nurse taking my blood thinking that I had requested that my blood be draw from my port, which I definitely did NOT request.

The port hasn’t been used yet, I have NO IDEA if it’s entirely healed, I wouldn’t have requested that.

But there it was, THE PATIENT HAS REQUESTED THE PORT BE USED. So the nurse tried to use the port, it didn’t work, she couldn’t get the needle thing in and it hurt like hell.  The nurse seemed put out with me, upset that I had my family with me, and the second nurse who came in to draw the blood from my arm was a bit abrupt, too.

Whether this is just ‘their way’, whether I was ENTIRELY misreading the situation (very possible) or whether there was some underlying reason for the oddness are scenarios I’m going through in my mind.  Suffice to say, the vibe of the place seemed odd to me.

But, then again, I just heard that my cancer is more serious than I thought. I’ve learned that it has to be treated more aggressively, and EVERYTHING seems odd to me.

I would be VERY happy to be proven wrong.  It may be that I’m just terribly oversensitive right now because of the change in the diagnosis, but it feels as though the needs of the patient may not come first in the Cancer Care Center at St. John’s.

Appointment Madness
I don’t know where the disconnect is, but I’m hoping that when I go back on Thursday for my “Chemo Class” I’ll get a better feeling about the place.

After my meeting with my doc, when ALL I wanted to do was crawl home, write a bit, do some research and contemplate what I’d just been told, I had to spend an hour standing up, leaning on a high counter, while one of the receptionists scheduled appointments.

Making a woman with so much cancer pain stand at a reception desk for an hour scheduling simple appointments just seems cruel.  At the least it seems they should have a dedicated scheduler on staff where a client can SIT DOWN with office staff and work through setting up appointments.

More to the point, I believe these appointments could have been scheduled very easily without me even being there!  I mean, I have nothing else on my agenda right now except for getting better.  If they’d just schedule the infusions, appointments and possible transfusions, I’ll just show up (or let them know if I can’t make them, and change them)  It seems a perfect use for the MyChart portal.

A Different Center?
I definitely want to continue my treatment with HealthEast, but an alternative would be to move my chemo to a different Cancer Center within the network.  Woodwinds is the center where I had the Bone Marrow Biopsy, and would be an alternative to St. Johns. But would it be any better? What makes me think one center would be more caring than another center?  It’s farther away, and it could/would make things more complicated with my Med Oncologist, which is not something I relish.

I don’t really want to change, I just want to feel better about St. Johns.  And that might not be possible, and I will just have to live with that.

HealthEast and HealthPartners are always sending out surveys for patients to fill out, I have two in my bag right now.  But do they REALLY want to know about issues, are they REALLY interested in making the experience of healing cancer as good for the patient as it could be?

Am I just being difficult to ask these questions?

I think I need to sleep on a lot of stuff.  In all honesty, once I get going at ANY Cancer Care Center, I think I’ll just be on auto pilot as I fight through however many Chemo sessions I end up needing.  I may just be grasping at silly details to keep my mind from focusing on worst case scenarios.

Farther Along
The phrase, “Stem Cell Transplant” was used as a possible prophylactic measure against return of the disease.  Having been through that with Gerry, and not really knowing what that might mean in terms of insurance, etc., I’m just leaving that alone right now.

It’s scary, though.

D Day

I’ll Be Taking The Walking Path For The Time Being!

The diagnosis of my cancer was PDQ (pretty damn quick), coming immediately after they’d finished my MRI on July 23rd.  At the time I was a bit nonplussed when the ER doc, after one test, made a pretty conclusive initial diagnosis; “Well, you DON’T have Fibromyalgia, you’ve got CANCER.”

After a bit of discussion I understood what me meant was that there were THREE pretty sizable sites of metastasis (spine, back of the neck and lymph nodes) which was as much of a guarantee that I had cancer as anything else they could have seen.  The mystery at that point was, what exactly was the PRIMARY cause of the cancer.

The days between the initial MRI, the lymph node biopsy and the point when the pathology was ready to be addressed were LONG ones.  Only 5 days, but it felt like 5 months, and it weighed very heavily on my psyche.  Those were 5 days of pure fear.

Dexamethasone: All the sweats, hot flashes, puffiness and irascibility of Menopause, now in a convenient PILL!

When my Medical Oncologist, Dr. N, sat us down and told us that I had Stage 4 Diffuse B-Cell Lymphoma, our reaction was SO positive I think it surprised him.  My big fear was that I’d had a large, solid mass tumor somewhere; colon, liver, some terrible place.  And THAT would have been a very difficult diagnosis to process.

But I was extremely lucky.  Lymphoma is a cancer where the word “cure” is actually used.  Yes, I am VERY lucky!

TODAY is another D-Day, at least for me it is.  Today is the day we look at the results of all those tests I’ve been taking this past week, most especially the bone marrow biopsy and lumbar puncture, to see if the cancer has moved into my spinal cord.  I think it’s about as scary as it sounds.

I asked demanded that I have my two more painful tests under anesthesia, and more than ever I’m convinced it was a very good call.  The residual pain I feel in my back and hips from these tests is pretty extreme this week, I would hazard to say that the pain these last few days has been as bad as it was at the start of this adventure in mid-July, which is pretty bad.  The main difference is that this time I have several pain meds I can use to break through this pain, and that’s a mercy.

Dealer’s Choice
So today I have my “long visit” with Dr. N,  where we’ll go over the test results and discuss what may be the next step in this trip.  With absolutely no medical experience or education of any type, my only point of reference is having been Gerry’s caregiver for so many years.

Topical pain relief from Galina!

But the truth is, Gerry is the ‘researcher’ in the family; he goes into his head, he reads stuff, he deals with numbers and percentages, THAT’s his comfort zone.

I’m not dividing my observations into a male/female way of dealing with pain and new medical information, because I know many women who are very numbers oriented (me, for one!) and I know MANY men who approach things in a more “feeling” way.

But in the case of Gerry and myself, I tend to be the “emotions whisperer” with the kids, Gerry tends to put the numbers into some type of structure that we can use to understand them better.

For this reason, when Gerry gets scared, or shows his emotions, it hits me very hard.  I’ve been scared this week, no specific reason, just overall FEAR.  Gerry admitted to me last night that HE is hella scared, too.  His fear paralyzes me, but I never want him NOT to tell me he’s afraid; he keeps SO much stuff bottled up inside as it is, I’m HAPPY that he shares his fears with me, too!

Emotional pain relief from Galina!

Good teams, like our family, will always find a way to regroup and work together, changing roles as each of us changes our outlook or understanding of the disease.  I am DEFINITELY feeling the need for some therapy, though. HealthEast Cancer Care at St. John’s only seems to have ONE Oncology Psychotherapist, and we have an appt for next week.  Apparently she’s exceptional, well loved, and — it being August — has been on vacation.

Note to self: NEVER get cancer in August again if you want to see your care team together in the same week…

I’ve been mentally preparing for The Worst News Scenario, and alternatively preparing for The Best News Scenario.  It’s really all one can do at this point.  Having spent a life in the theater, mostly working backstage, I love the feeling of an audience receiving all the parts of a theatrical production in the “order” that the director, designers and actors choose to present it.  Seeing exposition (back story) presented cleverly and well is a hallmark of exceptional theater.

Rx Pain Relief from the Docs

In terms of my cancer, ALL of the exposition rests in the hands of Doc N, who will reveal precisely what HE understands is happening inside of me later this morning.  In 4-1/2 hours, to be precise.  Which Gerry will want to be.

News when I have it!  Love always!

Strategizing

When Gerry was diagnosed wth his OWN blood cancer (Multiple Myeloma) in April, 2007, we were new folks in a new state (Minnesota!) with a couple of great kids who were newly placed in their brand new schools.

Max was a 4th grader at Randolph Heights elementary, where he quickly found a place with new friends (our neighborhood was LOADED with boys just his age, and he created some wonderful friendships right off the bat.)

Gerry Gazes at Scotland

We felt lucky to get Andy a place at the Linwood A+ school, which had an arts focus, and she did okay there.  Few things are perfect, but it was a lovely school at a tough time in all of our lives, and it was nearby and filled with active, caring parents and teachers.  Really, what more could one really need?

Giving Care
And me? I felt like was running, running, running.  Every day more running, never finished with what needed to be finished, learning to let things go that simply didn’t matter as much as what might be on the horizon.

And THAT was our default mode for years.

Trying to find joy and opportunities for growth for the kids, seeking as little pain and as much hope for Gerry, and me? Just chasing down freelance gigs and jobs that would dovetail with my own duties as Gerry’s caregiver and pay our mortgage was enough of a daily grind for me.

The spotlight that I knowingly focused on my family at this time has been debated online, folks have opinions about the wisdom/good taste of me writing and blogging about Gerry’s illness.

I took heart from the fact that Gerry seemed to love the blog, he was very happy with the book I wrote (basically the blog, plus extra bits) and I think he was proud of me.

We haven’t discussed it in so many words, but after 25 years of marriage, you have a sense of how your partner is accepting something, if you allow yourself to hear with your whole being.

Giving Joy
I was dedicated to not just getting THROUGH Gerry’s cancer journey, but to doing it with love and growth, passion and, yes, Joy.

A few years into our St. Paul adventure I signed up for a workshop at our local Public Access TV Station.  Max had been involved with them through an after-school-work program that the City of St. Paul had set up. Have I mentioned yet today JUST how livable and amazing our adopted town is?

Meta Max

SPNN, St. Paul Neighborhood Network, is an amazing resource, and given Max’s Television DNA* a perfect fit for him.  Watching him grow, and then seeing him learning to lead and teach other young people, THAT was the most amazing part of being a Mom during Max’s journey.

Andy moved in a direction totally new to any of us, which is exactly as it should be!  Once we were able to get both kids involved in the Breakthrough  Program, they found their places and just continued to grow.  We had to FIGHT to get Andy in, her teacher at the time was under the assumption that because, quite frankly, we were white, we had no place in the program.

So she withheld Andy’s application, and didn’t even send it in.  When we discovered this, I spent a few busy afternoons chasing down signatures and talking with program directors, and they promised that Andy would definitely be considered for the program.  Then we heard she was in, and we were so grateful!  It was the start of a very good chapter for both Max AND Andy, setting them up for success in high school and college.

Andy Draws On Her Love of Nature

At it’s heart, Breakthrough St. Paul (BSP) is a program designed to help kids who might fall through the cracks get on the right track and get into college.  Because of the topsy-turvey cancer life we’d been living, some days just feeling BARELY able to keep it together, the assistance that BSP lent us made a huge difference.

For Andy, perhaps the biggest milestone was a week-long canoe trip in the Boundary Waters of Minnesota.  This was arranged through BSP, the kids left from YMCA Camp Menogyn and happily paddled about for a week.

If I’d previously thought of Andy-and-the-outdoors at all, it was taking a bike ride, or a walk through the South Mountain Reservation (back in NJ.)  I did not expect the strong, formidable, brave and beautiful canoe goddess that began to emerge in place of my child.

Beautiful, Fierce Becca!

Each year Andy’s canoeing exploits grew longer, until by high school’s end Andy and 4 other women embarked on an amazing 52-day, 2-canoe trip through the Canadian Arctic, led by brave and resourceful Becca (who eventually became our first “payroll” Part Time Dyer at ModeKnit Yarn!  We’re one big family!)

Each child growing so differently.  So much joy that brings.  Andy went to canoe camp, Max went to debate camp, and life is always an adventure.

Care Taker?
In the same way our kids grow independent, part of a family but also vastly different, Gerry and I have cancer journeys that seem to diverge into a yellow wood.

We’d debated the term—and kicked about the role—of caregiver between us.  When Gerry was at his low point, I was there.  But a few years later when I seemed struck with Fibromyalgia** our story turned inside out a bit and he cared for me SO beautifully.

Now that I’m fighting my OWN blood cancer (Stage 4 B-Cell Lymphoma) my ability to be a care giver is in question, and with the return of Gerry’s cancer last Fall (and the complications from his latest drug therapy, 2 heart attacks in March) Gerry caring for anyone other than Gerry is out of the question.

Gerry’s caring strength rests in comprehending and explaining the ins and outs of our insurance, and he does that VERY well. Ever family should be so lucky to have a steward like him watching out for the asshattery of Insurance Companies as they try to find ways to screw us maximize profits.

<Rant>
We are DAMNED FORTUNATE to be living in Minnesota, where the government really DOES care whether it’s citizens have decent health coverage and, for the most part, refuse to play political games with our health.

This means that I don’t just have insurance, I have DAMNED GOOD insurance. When a state will allow it, the ACA WORKS!  When folks try to throw wrenches in the works simply to prove how much they hate Barack Obama, they do nothing but hurt their own citizens.  What on earth could be LESS patriotic that hurting American Citizens simply to win a political argument?

What I have is what EVERY AMERICAN deserves.  Freedom to pursue the healing plan that my doctor feels is right for me, and the right to question that, augment it, or change it.
</Rant>

But back to our family’s strategy for CANCER II, MOM’S TURN.  We’re still figuring it out.

Enter Andy
Fortunately I have a loving and willing caregiver in the form of Andy, just out of college, not yet employed, filled with love and capability!

In my condition, requiring help with several personal, intimate duties, I will most likely be permitted a PCA (Personal Care Assistant) and, if possible, I’m hoping we can make Andy that person.  I’ll get the help I need, Andy’ll have a paying job, and the school loans can start to get paid back!

It's ALIVE!

Time To Care For Me, Now!

Max will be returning to college soon, and I will miss him.  But at the same time, it’s got to be impossibly difficult for a young man to see his mom in such a physically debilitated state.  Moms & Sons, such a wonderful, yet delicate dance we do.

I don’t have a ton of pride, I’m more of a self-respect type of woman.  The nurses at my various procedures are constantly trying to tie up my gown, or throw another robe on me, scandalized by my milky white rear end  floating like a moon around my bed.

But I will cop to a certain pridefulness in front of my kids when I want to appear to be strong.  Once Max is back at school, I think I’ll be able to relax the standards a bit, not hold myself up quite so high, and I’m glad he won’t be here every day to see my fight through the chemo.

It’s a sad day when simply being CLOTHED is considered a high standard.

Tears
And now, just because I think it’s important for YOU to have a good, relaxing cry this Sunday morning, I bring you a lovely TV ad which features dogs, knitted dolls and love.  You’re welcome.

*Gerry and I have both worked in television, he as a producer-director, me in art & wardrobe departments. It seems we’ve passed this love on to Maxie.

**Did I have Fibromyalgia? DO I have it? Or was it this nascent tumor making itself known EVER THEN?

Income Must Exceed Outgo

Sookie St James
Dyelot 060318

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.

Betty Confetti
Dyelot 081717

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!”

Freckled Iris
Dyelot 071818

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.

Crab Nebula
Dyelot 053018

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.

Night Music
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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.

Emily Gimore
Dyelot 072817

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!

Waiting Game

Today was the Lumbar Puncture, and it went quite well.  Thank you, to all of you, who sent me positive vibes and love, I’m certain that I was surrounded with so much positive energy that it couldn’t HELP but increase the chances for a good outcome.  You are all stellar, take a bow, star-stuff folks!

Waiting Room Knitting; Setting up for Mitered Square #4 in ModeWerk Fingering

As usual, the nurses and docs at St.  John’s were terrific, my only complaint was after the procedure I was STARVING (thank you, Dexamethasone…) and I was about to eat someone’s arm off before they got me the bagel I’d ordered AN HOUR BEFORE.

After a procedure, like my port placement or the LP today, they allow you to order a light meal since these are fasting procedures.  The food’s always been crazy fast, but today I couldn’t get a bagel for love nor money. You do NOT get between a woman on Dex and her bagel, it’s just NOT DONE..

Bone Marrow Biopsy
Tomorrow I’m at a new place, Woodwinds in Woodbury, MN.

Working on Mitered Square #4 in the BULKY blanket. Colors: Pearl, Platinum & A Lovely Thing

I’ll be under sedation for a Bone Marrow Biopsy, and then I’ll be home resting the remainder of the day.  Wait until THEY hear me roaring for food after my procedure!

Friday is my last diagnostic test, it’s a PET Scan back at St.  Johns (this is the test I screwed up on Tuesday when I ATE before instead of fasting!)  I’m really thrilled they were able to get me in so quickly.

I hoped that if I’d be able to get the test done THIS WEEK, then next Tuesday when I meet with my medical oncologist he’ll have the info he needs to decide which chemo drugs to mix up for me.

So I’ll be waiting around for a few days.  But, at it’s heart, that’s what a great deal of life is, and I’m prepared with needles, yarn and several amazing audio books.  

Life = time, that’s really all that we get.  We can choose to spend it happily or in great frustration. Circumstances can make this choice INDESCRIBABLY DIFFICULT, but at some point there’s a moment when we can choose to decide, “This mind set is making me sadder than I need to be, let me try to understand it and perhaps change it.”

For me, knitting is the tool that allows me to move from a frustrated, can-hardly-stand-to-be-in-a-waiting-room person to a woman who is just a tiny bit happy to have a few moments to sneak in a couple of beautiful rows and make myself very happy.

I’m VERY fortunate to be starting the FIFTH version of a new pattern.  It’s a baby blanket that is based, loosely, on the Fibonacci Number.  Mostly it’s just a way to do more mitering using interesting colors juxtaposed against white.

I’m re-knitting this project SO much because I want it to be a Universal Pattern, meaning it can be used with ANY of our bases, ANY weight yarn, and still get a nice result.  In the current incarnation of this pattern I’m using Pearl as our neutral contrast, but the main color ISN’T one of our FLOWS or Variegated Colors.

Blankety-Blank-Blank
I’m using a blank (basically, a large swatch weighing 100 grams) that I’ve hand painted in a design (in this case, I drew a few mountains and a valley, so the whole thing is in shades of green and blue and purple.)

Working on Mitered Square #5 off of an “artistic” blank.

I’m VERY disappointed that I  didn’t photograph this “masterpiece” of dyeing, It really WAS a lovely blank!  If we end up marketing these, I think I want to present them already in balls, but with a photo of the original blank on the package.

Since I knit/dye two blanks worked together, I can’t just sell the blank, that would be TOO hard to work off of (two strands??) for the average knitter.  Hell, it would be very awkward for me!

Essentially, it would mean ripping out the blank as I worked it.  But, in addition to the yarn I would be working with, there would be an equivalent amount of yarn to roll into a SECOND ball as the blank yarn was knit.  This is just too confusing and would be bound to cause a lot of knots and tsuris!

The way I knit our blanks (yes, I knit them, I don’t purchase pre-knit ones) I put TWO strands together for the sock weight bases, which means when I dyed this blank I ended up with two matching balls of yarn.  In this pattern, there are 2 balls of color, and 1 ball of neutral.  I alternate the colors with a neutral, using 2/3 highly colored & 1/3 neutral color yarn in the project, I think that gives a really nice balance.

I’ll work on one color yarn-from-blank ball from the inside out, then switch to the second ball working in the opposite direction, the colors should ebb and flow nicely.  Well, that’s the plan.  I still haven’t gotten to the BLUE part of the yarn, THAT’S what I’m waiting for!

Another Fibonacci Spiral in ModeWerk DK Colors; Cuckoo Wasp Flow, Coal

I have to say, though, the colors really ARE lovely!  But I’m such a sucker for green and blue and purple that I’d love it no matter what.

So scattered through this post are a few shots of the piece so far, I’m still in the “green” area of the painting, I can’t wait to see how the whole balance of color changes as I move into the blue and purple areas!

If it seems like a lot of work for a very SIMPLE pattern, it is.  My own mind is a bit scattered right now, and re-knitting something I’ve done several times is just about my speed.  You can learn SO MUCH when you redo a design, and I’m hoping that this pattern will have very helpful tips that will improve future mitering projects for the knitter.

And I’ve come to the conclusion that GARTER STITCH is such a lovely fabric, it makes me feel at peace with little or no effort.  Excellent radiation brain knitting!

Lovely, uncomplicated Garter Stitch Fabric. Colors: Pearl, Platinum & A Lovely Thing

The Tumor Sleeps Tonight
But today I learned that yarn and patterns and ME, myself, haven’t been the only things waiting for something to happen.

During each radiation treatment Xrays were used to align the laser for best zapping power

Apparently my tumor has been a sneaky pete, waiting in the wings, hiding in places where only an MRI would find it.  I can’t be TOO angry at the tumor, after all, I made it.  And I’m enough of a crafty woman to appreciate a good (artistic?) creation.

The tumor has grown straight (well, not really in-a-line-straight) through my T10 vertebra and is going into my T9. There’s also some growth to the right, which I can feel, which is the weirdest thing in the world.

No one has an idea HOW long the danged thing’s been growing.  How long have I HAD Lymphoma?

And, apropos of nothing, I keep imagining my tumor growing like Little Groot. Probably the absolute LAST kind of imaging I need to do as I “think” this tumor away, but I can’t stop. It just LOOKED like Groot in the MRI.  I’m a nut.

Baby Groot Has Been Patient

Gerry wonders if I EVER had Fibromyalgia, that perhaps it was Lymphoma all along.

I’ve been exhausted, in pain, but nothing that seemed extra “tumor-esque”  And it took an MRI to even see this tumor, a couple of Xrays and a CT Scan didn’t really show anything.

I’ve spent the past 2 weeks receiving radiation treatments to shrink the spine tumor. Even though the treatments are done, the little rays are still zapping around in there, doing their work!  Will they be successful? We’ll have to WAIT.

I’m trying to come to peace with the fact that I was clueless (on a conscious level) of something so huge happening within in my body.  I think I am better at discerning trouble in Gerry, whether a return of his dreaded M-Spike or an impending, unexpected Heart Condition, than I am in seeing/feeling/knowing that something is amiss in my own body.

Messy little first attempt
Colors: Guava FLOW and Pearl

Caregiver is a hard role to slough off.  Patient is a harder role to inhabit.  Thankfully I have my costumes picked out for me, and I have my waiting room knitting!

Scary Days On The Horizon

Tomorrow (Wednesday) I will be getting a Lumbar Puncture, and I’m a bit afraid. But not as afraid as I am for THURSDAY.

Thursday is the day I have been dreading ever since I read “Death Be No Proud” when I was about 12 years old. A girl never forgets her first Spinal Tap.

DBNP was a memoir by John Gunther, writing about his son’s brain tumor and death at age 17. I remember it was a very tough read, but the most daunting chapter was the Spinal Tap.

Things have improved dramatically since 1949, when (as one of my doctors joked) they used to do Spinal Taps with a can opener.

But I’m terrified. I’m terrified of the procedure, and I’m terrified of the Lumbar Puncture on Wed. I watched Gerry get both of them 12 years ago in his initial diagnosis up in St. Paul (at St. Paul Radiology, same folks who are doing MINE) and I saw how much the pain impacted him for DAYS after.

I also saw Gerry get second (and third and fourth) of each procedure at the Mayo, and how he barely felt anything because they choose to sedate for these procedures.

Since my admission to HealthEast/St. Johns I’d been ASSURED by the doctors I met that I could have both procedures done with very strong anesthetic. This has been a bit of a fight, and it’s clear that NO ONE is happy with me, but tomorrow I’ll be doing to a different facility within HeathEast to get the Spinal done on Thursday.

Tomorrow I’m back at Ol’ St. John’s for the Lumbar Puncture, terrified.

Bone pain is a scary thing for me. I have a hard time when anyone does anything to my TEETH (outside bones, per Kimmy Schmidt) and sometimes dentist visits have to be broken into TWO visits because – pain.

If I sound scattered, confused, I am.  It seems that NO ONE can clearly tell me what is a Spinal vs. a Lumbar Puncture vs. A Blood Patch, but I’m getting all three of them, over the next two days, and I wish I could be anywhere but here.

I’ll be visualizing the loveliest, longest, most beautiful warm-evening bike ride ever.  Or maybe a magical Winter evening ride, around the lake, with all my skin covered and twinkling lights strewn over my bike.

From the moment someone said, “Cancer.” I knew that these would be the scary days.  Damn I’m scared.

A Good Outcome

I realize how naive this post may sound, but sometimes that’s my default.

WIth big things, giant life events, I’ve discovered that I have a habit of not entirely comprehending something until I sit with it, rest with it, and let it come to me through cracks in my consciousness.  I think I’ve learned to do this as I’ve aged, because if I don’t place myself in an almost meditative state when huge things happen I can have a tendency to overreact, and one true thing I’ve learned in 56 years is that as often as we praise resolute action, thoughtful response gives a better outcome.

Birth Stories
I first heard, “Outcome” as a euphemism for “Life or Death” when I was pregnant with Andy.  I had been taking birthing classes through the Methodist Hospital in Brooklyn, but Gerry was working evenings on some stagehand thing so my good friend, Sue Bakula, came with me as my partner.  The nurse teaching the class was dry but very funny, and stressed that we were all seeking a ‘positive outcome’ in our delivery, that was really the only thing that mattered.

It DID NOT MATTER if we had a birthing pool, or a no-med delivery, or every med in the dispensary pumped into our veins. It DID NOT MATTER if we followed our birthing plan, or threw it out the window. It DID NOT MATTER who was in the room with us, or who wasn’t, or whether we even LIKED our husband’s half sister who insisted on being there.

The only thing that mattered, that REALLY MATTERED, was the outcome. And we wanted a good one.

Her belief in showing us the finish line, and allowing us to use ANY tool within our resources to reach that line (or discard it half way through if it wasn’t working) was a revelation to me and increased my own pragmatism as a mom.  That nurse taught me a LOT more than just child birth tips, and I’ve been grateful to her long since.

And my friend, Sue? My friggin’ derelict, partner-in-crime, buddy from Ohio (we met when I was a grad school intern at The Great Lakes Theater Fest in Cleveland)  She was pure delight, and remains one of my most precious connections to an exciting time in my life.

Oddly, and wonderfully, when we were ‘graduated’ from our childbirth class we were given pretty certificates of completion. Mine was filled out exactly as you’d hope, my name, the dates, etc.

Susan’s, however, was inexplicably made out in the name of Scott Bakula (Sue’s last name is also Bakula, but she pronounces it differently) and THAT was the icing on the cake.  Just so’s you know, officially, I was accompanied in my child birth classes by Scott Bakula.  I’m just THAT special.  When we showed it to the nurse she blushed and laughed and said, “Oh good heavens, I was watching TV while I filled that out and Mr. & Mrs Smith was on…”  What a fun and happy mistake.  She offered to correct it, but we loved it and kept it!

Non Birth Stories
After childbirth, the most life-shaking thing to happen to me, personally, was the discovery of a huge tumor on my ovary about a year after Max was born.  Because of the sketchy nature of US health insurance then (and today) I was—once again—at the point of losing health insurance for some insane reason.  Money, most likely.

But before I lost my insurance I went to get complete check ups, just so’s I knew what was stewing around in my body when I wasn’t covered.  And this GIGANTIC tumor was discovered.  It turned out to be benign, but “pre-cancerous”, and my very kind and wonderful OB/Gyn (a friend of the family) recommended that I have a radical hysterectomy because, as she said, “If we do this, you’ll lose your reproduction.  If we just remove the tumor and it is the start of ovarian cancer and we don’t get it, you’ll lose your life AND everything your family owns to pay for it.”  And she wasn’t wrong.

I love kids, I always wanted several. The fact that I have TWO children is a bonus, and I realize exactly how fortunate I am.  It seems in our family we just can’t have children very easily.  Aunt Wanda had two children (my cousins Tommy & Jan) but neither of them could have kids.  That happens over and over in our family, the line just — stops.  At the point I was born in 1961, I would the the LAST baby born in the immediate family until Andy (née Hannah) was born in 1996.  Babies are very precious in our family.

SO when I realized that a radical hysterectomy would mean no more chances at kids, I was sad.  But I was realistic.  Could we even AFFORD a third child when we couldn’t afford health insurance?  Probably not.  We had two good ones, we were lucky, so I figured the best thing was to move ahead and not look back.

Who knows how life might have been different if another pregnancy was in the cards for me, whether it would have been sweeter or more painful, but I know it would have been more complicated.  And with the decade ahead of us, less complication would be better.  The radical hysto was FAR and AWAY the best outcome we could have hoped for.

Death Stories
My own tumor seemed to mark the beginning of a period of death in my family that seems to hit a lot of folks when they reach a certain age.  It’s as if so many expiration dates hit all at once.  Within a few weeks of hearing about my tumor my mother discovered she had liver and lung cancer, and not long after that my cousin Tommy discovered fast moving cancer and was gone in a matter of months.

During this time I didn’t tell my family about my own growth, or the fact that I’d be having a hysterectomy when I retuned home.  Andy and Max had a nice, long visit with Grandma, which was exactly what was needed.  Telling mom that I wasn’t well seemed unimportant to the most important outcome, which was to allow my mother to be as peaceful and happy as she could be.

But peace wasn’t in her future, and — having been told that it would be perhaps 4 months or so before mom would be going into hospice — I left mom living with my brother Jimmy and his wife, Karen and went home for my own medical journey.  I had all the support I needed, it was important that mom wasn’t part of that support.  But I was scared, of course, and I don’t know if I was fully prepared for the ways a hysto would change a 40-year old woman’s life.  But that’s a different story for a different blog post.

Just about 4 months to the day from returning home I received a call from my brother’s line.  As I answered I just assumed, “Oh, that’s Jimmy calling to tell me that Mom’s condition has worsened and it’s time to begin thinking about palliative care.”

But it wasn’t. It was mom telling me that the previous evening Jimmy had passed away from a heart attack.  At age 45.  And it was exactly as heartbreaking for everyone as you would expect.

Back to Texas with only Andy this time. She was old enough to love and remember Uncle Jim, and I feel that funerals are part of life. Mom was shaken up, destroyed.  I know that parents shouldn’t have favorites, but the truth is, we do.  Not every favorite kid is ALWAYS the favorite, some are the favorite at being quiet with mom, or the favorite at running around and having a wild time with mom.

The word “favorite” is loaded, but since I grew out of adolescence I’d understood that my mother and my brother had a bond that was VERY special, and like nothing I would have with either.  It didn’t make me sad, or left out, but it WAS real, and something that was notable in our family.  Sadly, my father and I did not have an echoing ‘close bond’, so in many ways I felt like an outlier in my immediate family for much of my youth.

So when my mother lost her son, and went into hospice not long after, it seemed unnecessarily cruel of the universe to set those facts in that order.

The woman my mother shared her last room with was named Christine James. They only put the last names on the door, so mom’s room was emblazoned with James Modesitt. The name of both my father and my brother, and that fact made my mother happy and gave her a bit of peace. Odd, those things.

More Death Stories
Returning from Mom’s funeral, actually driving back from the graveyard, my dear cousin Jan—we were the nearest thing either of us would ever have to a sister—told me that she had found a lump in her breast and it seemed serious.

Jan’s mom and my mom were sisters, Wanda and Mabel. My mom was the older; hard working, keeping all the family pieces together when her own parents divorced and the family was split up during the depression. Aunt Wanda was younger, a bit more wild and carefree, but JUST as hard of a worker. Like so many families, we are grafters, my family, we define ourselves by how much work we’re able to get done.

So Jan and I , born 8 years apart, grew up VERY close.  I can say without hesitation that I loved my cousin Jan more than any other human being in the world for long, long periods of my life.  In a difficult family situation of my own, Jan was my ballast, but 500 miles away from Toledo, where I was raised.

Most Summers I spent huge swaths of time with Jan, driving around in her car, eating hot dogs at the A&W and swimming at the Parkersburg City Park Pool.  Drying off, roasting our never-to-tan-always-to-burn skin on a deck chair, we could look up across the street from the city park to Mt. Olivet cemetery and see where, one day, our parents and Jan would all be buried.

The source of Jan’s cancer, when it was finally discovered metastacized in her breast, was skin cancer.  I hate heat, I don’t like the sun very much, and I’ve raised my practically-see-through kids with the same loathing of sunburn that I had.  But Jan would get slightly darker than I could, so she was the sun worshipper in the family and I would sit in the shade and read a book.  Was this the beginning of her own cancer trip?  Who knows.

During Jan’s rather rapid illness Gerry and I made the decision to move to Minnesota, and in the course of that life adventure we discovered the cancer that would define our own lives and marriage for over a decade.  The drive from MN to WV became rather familiar to me, but not quite as familiar as the drive from our new home in St. Paul to the Mayo Clinic.

Jan passed. And not long after another cousin passed. And I felt like the angel of death. We discovered not long after that DuPont has been dumping C8 in the Ohio River near Parkersburg, causing MANY fast moving cancers in the area.  I can’t write about this with more anger than my fingers contain, so I’ll leave you with this article on my family’s home town and how unimportant people are when they’re poor.

Life Story
I don’t want to go into a long post about Gerry’s Multiple Myeloma journey, I’ve written about it at length in this blog, you can use the tag “Multiple Myeloma” to search out those posts.  But I will say that his own outcome has been so much more brilliant than we ever hoped.

At the outset we were given the only data that was then available on MM survival.  Since the disease usually affected folks in their 70’s & 80’s, life expectancy wasn’t long; we were told he may have 1 – 2 years, but they wanted to try a stem cell transplant and that might give him another 5 years.  Of course we said, “YES.”

It’s been 12 years, and every day is a gift (some just more nicely wrapped than others…)

And now I have a blood cancer, Lymphoma, which is so damned similar to Gerry’s that it’s freaky.  Even weirder, the pain that caused us to seek a diagnosis for Gerry in 2006 was centered around his T10 vertibrae, just like mine.  Now THAT is togetherness, we were definitely made for each other.

What will my outcome be? Probably good, they tell me, and that’s excellent!

Of course, I’m writing this on the morning of my final radiation treatment, before we’ve assessed how well that’s worked.  We will have to see if the tumor in my spine has shrunk as well as they’re hoping, see what the results are of other tests I’m having this week (two painful ones for which I’ve requested, and it appears they’ve grudgingly approved, stronger anesthetic than is usually given) 

All of this info has to be considered before I start with the chemo, so they can tailor the drugs to fight my own lymphoma in the most efficient way.  That’s the next big phase in this treatment, right now we’re looking at about a week of interim testing, evaluation and a bit of rest, which I could dearly use right about now.