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.

Personal Space

For those of you who are just wandering into my sordid lymphoma tale, here’s a quick overview of her health timeline since Fall 2017.

Fall ’17: Annie was exhausted but thought it was just laziness.
Spring ’18: Annie begins having pain in her back & chest.
Summer ’18: Tumors are discovered in Annie’s spine, neck & lymphatic system.
Late July ’18: Started radiation treatments to shrink the back tumor.
Early Aug ’18: Began Extra Testing*, end radiation treatments.

Thanks, Shaq!
[Reenactment]

I was admitted into the hospital on July 23, a Monday, after an insanely painful weekend. Yes, painful, but totally worth it as I learned that the Icy Hot Tens patch REALLY works! Thanks, Shaq!

The first few days of my admission were devoted to a preliminary diagnosis (cancer, 3 different mestaticized areas) and to reducing my pain levels and testing me.  Based on the size of the tumor in my T10-T9 vertebrae, they also began radiation to shrink that area.

But for the first few days I was really in shock. I wrote like a maniac (writing was calming) and found it very hard to sleep. In my writing frenzy I missed some stuff, observations that I made along the way but neglected to ‘flesh out. I was working in broad strokes, my brush was NOT very fine!

Standing back a bit, now, a few weeks later I can go at the canvas with some finesse.

Mon – Wed
So Monday, Tuesday & Wednesday were me getting used to possibly/probably having cancer. Thursday was coming to terms with alternative endings that might not be rosy (remember, at this point Lymphoma was NOT known to be the Primary source of cancer.)

But although Thursday was mentally a ‘down day’, it was physically a very positive day because physically I was becoming steady enough to clean myself.

Friday
Friday morning was a beautiful day.  I didn’t get outside, I didn’t even see if the sun was shining, but it was a gorgeous day.

All I needed was the freedom to take care of myself, (Henceforth this day shall be known as, “The Glorious Friday Of The Free Pee”), to get myself in and out of a shower, to clean off and put on my own underwear.

Just Another Word For Nothing Left To Flush
Before I left the hospital I joked with one of the nurses about the intimate things I was threatening to put on the Caring Bridge task page, but it was whistling past the graveyard as I was FLAT OUT TERRIFIED.

Once I was home, faced with the reality of what life may be like with so much exhaustion layering every aspect of my life, that little ‘wipe me’ joke wasn’t funny at all.

On the day I returned from the hospital I could barely make it up the stairs into my house. “I need to get a cane.” was all I could say to Gerry.  I’d already lost so much energy that my goal was simply to walk up the stairs to use the bathroom.  And I didn’t make it.

And it’s only going to get harder.
And I am terrified.
And I hate our stair carpeting.

What, Me Worry?
I’m worried about being debilitated.  I’m worried about losing my ability to do the things for myself, things so personal, that we never consider that ANYONE would be involved in them except ourselves.  But it’s something so many of us HAVE dealt with, with children and with parents, and even with partners.  I took care of him 12 years ago in this way, but I’m terrified by the need for the return of the favor.

When my mother was sick with colon cancer before her death in Texas in 2005, I visited her for an extended period and was horrified to discover how she’d been neglected by some of the nursing staff at her hospital (not nursing home – hospital!)

She was so sore from being left unclean that any kind of evacuation of her bowels or bladder led to a horrific pain that she could hardly bear.  As a daughter I was disgusted, but as a mom I knew exactly what to do.  I bought a big tube of diaper rash cream, found some adult diapers, and cleaned my mother up. Over and over again.  And eventually with enough A&D ointment, love and careful washing she was healing and was in much less pain.

Pride & Pragmatism
But what I saved her in physical suffering, did I cost her in dignity? Knowing my mom, I don’t think she cared very much, she was a pragmatist. And she new I loved her.

Does a mom or dad ever WANT their daughter (or son) to care for them in such a way?  Do I?  Will I?  Is Gerry physically capable of doing what needs to be done once I’m so exhausted with radiation and chemo that we can deal with this?  My mind dwells, unhelpfully, on such matters because at the heart of it I am a cold eyed pragmatist.

Gerry’s seen me give birth.  That should be the point after which nothing needs to be asked, or apologized for, within the interpersonal actions of two people who are dedicated to caring for each other in every way that is necessary.  But what if the soul is willing, but the body is unable to help?  I repeat; Gerry’s seen me give birth.

Birth is heavy on my mind these days.  During the 3 weeks leading up to my week-long “vacation” at St. John’s this week, I kept telling my husband, “Gerry, if I hadn’t had that hysterectomy 18 years ago, I’d swear that I was pregnant.” 

But I wasn’t.

Perhaps my body, currently growing three very different clusters of malignant cancer cells, was having a type of ‘phantom pregnancy?’ growing three new semi-human lives Who knows, maybe.  Have I devised my own dark version of Triplets from Band Wagon?  Now I’ll be spending the rest of the day imagining my three malignancies, my three triplets, singing and dancing up and down my spine.

*Bone Marrow Biopsy Test, Pet Scan & Lumbar Puncture, My Triplet Tests this week!

I’m Sorry..?

Being Sick Sucks.
I’m about to complain about folks being NICE to me. How bitchy does that make me, huh?

I will admit to being the kind of woman who DOES like a bit of the old, “How’re you feeling, Sweetie?” commiseration.

The Bruises Of my IVs

I like sharing with folks what’s up, and hearing their own ailments, and maybe both of us saying something to each other that makes us laugh and feel more okay with being under the weather. I like that kind of human interaction, and I’m not ashamed to say it.

I’m not a stoic. I am not brave. I am terrified of pain, I can be a child, and I’d rather be on my bike any day of the week than get a blood draw. It’s lovely that folks call me brave and stuff, but the truth is, I’m kind of tap dancing through this, I tend to be a funny person, but because I’m cracking jokes doesn’t make me ANY BRAVER than the guy next to me who’s doing this thing more quietly. I’m simply trying to be true to myself.

But here I am. As sick as I’ve ever been, even though I keep forgetting that and doing stupid things like getting up from my chair too quickly. And although it’s just been 2+ weeks, I feel as though I’m falling into a rhythm that might sustain me for a time during my recovery.

Because RECOVER is what I fully intend to do.

I’m not sure that I’m up to BEATING, FIGHTING, KILLING, or CRUSHING the Cancer. I just want to recover. Please.

At the same time, on a daily basis, because of my oddball way of dealing with my illness, it seems that I am disappointing SOMEONE involved in my recovery — sometimes only obliquely as a well wisher on FaceBook — but I ALWAYS seem to be a disappointment.

I am 100% certain that this feeling of being a disappointment is within myself, that I am picking up cues from folks they’re not putting out, I know I can do this, and the pain and fear that have joined me on this journey tend of screw up my ability to ‘read folks’ well.

An Example
Every day for the past 2 weeks I’ve had a radiation treatment.

With Gerry’s cancer, there was no large tumor, so radiation wasn’t one of his therapies. This is the FIRST time I’ve come into contact with a radiation laser, or with my own bizarre side effects involved in this therapy. Hot mouth, dry mouth, hot head, confusion and TOTAL EXHAUSTION.

Just.
Complete.
Absolute.
Inability.
To.
Get.
Up.
And.
Pee.

Which is a hell of a thing to admit in a blog, but there you have it. Perhaps someone, somewhere will find this titillating and might leave our country alone for a few hours?

Pills are pretty

When I get my radiation treatment, I hobble into the room with my walker (actually, Gerry’s walker from 12 years ago, and BABY and I glad we didn’t get rid of it!) then I slip off my robe and use a step stool to sit on the table.

The two technicians, in concert, lift my legs up onto a piece of foam to keep them in place and make me more comfortable. Then, on either side of me, each one takes an arm and they lower me into the correct position. I have sharpie on my chest that they use to anchor the laser, and I hold my arms over my head, grabbing a few plastic dowels, to help my body align in the way it needs for the laser to hit the tumor correctly.

The techs have the ability to take xrays as they work, sort of functioning pictures that help them determine that they’re exactly where they need to be.

Once I’m ‘locked in’ they start the procedure, and the laser arm slowly moves all around the table, sometimes the table moves slightly, and in about 15 minutes I have as much radiation as I can stand and it’s time to go. This is generally when my mouth is so hot I swear I could cook a marshmallow by just blowing on it.

The Radiation Table, which looks like a bistro in Chelsea.

A few days ago—a rough day—when I had a doctor’s appt and I was still on DOUBLE Dexemethesone (which tends to make me a hyper, slightly crazed, emotional mess.) I had one of my treatments that got a little emotional.

So there I was, Little Miss Messy Dexemethesone McMessy, strolling into my treatment, sitting on the table, and one of the techs reached her arm over and tried to bring ONE of my legs up onto the foam.

Because of the placement of the tumor, both legs must be moved together, to move them individually is very painful. Also, I just don’t have the strength to MOVE my legs, someone has to lift both of them, and the other person arranges the piece of foam and rests my legs onto it.

But the tech, either confusing me with a different patient, or forgetting that I can’t move my legs independently, seemed a bit impatient as she motioned for me to ‘get on the foam’

THIS is the point where she may have just been indicating, “Hey, there’s your foam!” but I READ it as, “Get your leg up there!”

So I said, “Um, I can’t move my leg on my own, I need someone to lift up both legs.”

She responded, “You did it YESTERDAY…”

And I totally lost it. I cried. I sobbed. I was a little diaper baby.

I felt so weak, so useless. Maybe I did do it the day before, I don’t remember, but on THIS day my pain and exhaustion were such that I could NOT do it at all.

I’m NOT not using the good mug anymore!

Before there could be too many tears and recriminations, we worked it out and all is well. The tech is lovely, it was simply a misunderstanding with someone (me) who is at a raw and sensitive time in her life and is on high-dose Dex. Maybe the tech is, too, come to think of it…

But I felt — I still feel — guilty for being unable to do what she wanted me to do. I felt guilty for getting weaker. I hate that.

One should not feel guilty for being sick, and I know this (you’re all going to tell me this in the comments, but I DO know this!!)  In short, I felt like a disappointment.

Don’t Knit For Me
The truth is, I really don’t need it…

Next on my hit parade is trying to find ways to tell folks THANK YOU, but the gift they want to give me will probably actually be a bit of a burden, and I don’t think I can deal with that as graciously as I would like to. Then I get resentful for the NEED to be gracious.

Then I realize that being gracious is the one thing that I still can do, even when I can’t walk well, or sleep all day, or knit. Being gracious takes very little effort, and is what will allow me to keep my humanity. And I feel like I’m failing in that department.

Some VERY KIND folks were talking about knitting a blanket for me on an online knitting site, I only heard about it because someone mentioned it in the comments for my blog. Such a lovely gesture, but so wasted on this incredibly hot, hot, woman.

I love the idea of charity knitting, I love the idea of doing something you love to help someone else. It’s a kind thing, and if the recipient needs a blanket then that’s a wonderful gift!

But if the recipient DOESN’T need a blanket, or a hat, or a jacket, or any knitted good at all, then is there a need to knit it up? Is the need about the patient at that point, or about making the person doing the knitting feel good about themselves?

I have MORE WOOL GARMENTS in my home than any other human being in the world. I am actively LOOKING for places to get rid of wool garments. I am HOT all the time, I seldom use blankets (I sleep under a sheet, even for most of the Winter) and a blanket is just a waste for me. In my life very few folks have knit for me, and I treasure each gift. The last thing I want to do is NOT appreciate a knit gift, but I also want to be able to tell folks, THIS MIGHT NOT END WELL IF YOU HAVE GREAT EXPECTATIONS…

Add to that how picky I am about my yarn, how sensitive my skin is right now, and the idea of receiving a box (BTW, opening boxes, extremely hard when you’re exhausted) cataloging a gift, writing a thank you note, finding a place to PUT the gift (Goodwill? A cancer charity?) Well, that’s all a ton of work, and I’d rather someone just message me to say, “Thinking of you, have a great day today!” than saddle me with the extra physical effort.

But when I said, “No blankets, please!” on FaceBook I heard from a few folks that I might have been more ‘gracious’ about it, and perhaps I could just take the blankets and send them to Gilda’s Club or something, and, besides (one woman wrote) that “every stitch in the blanket is a prayer!”

Which means I should — what? — donate it to a church instead of a cancer center?

I’d be happy to, but perhaps the blanket knitter should go to that trouble. I can barely get through a day without adding extra errands to my busy schedule of sleeping, sleeping and climbing onto tables to be lazered.

Don’t Pray For Me
Or, if you do, which is fine and lovely, but I don’t need to know about it.

And this brings me to prayer.

I’m not really a praying person, I have my own beliefs that I would not expect another person to adhere to. If prayer makes you feel more connected with your humanity and eternity, then THAT is exactly what you need.

For me, that is achieved through the repetitive activities I love, like biking, knitting, singing – I find great peace in all of them. Even in beating egg whites. It’s all a lovely, repeating sound echo that can get into my brain and bring me peace.

But sometimes – SOMETIMES – when folks say they’re “praying for you” you just sense that they want something back in terms of fulsome thanks, or a whisper, “Prayer DOES work, you know…” Folks sometimes REALLY need for me to buy into the power of the god of the talking snake, they need it for themselves, they need me to know that they’re prayers are BETTER than ‘good thoughts’ and will make the difference.

But I don’t believe in magic.

Like Mayo, St Mungos Apparently ALSO has Chihuly Glass pieces.

I love Harry Potter, a most EXCELLENT series of books. But I no more believe that Albus Dumbledore is going to get me checked into St. Mungos than I believe a nice guy with wounds in his hands and sides is going to remove my cancer.

I don’t JUDGE folks for believing it, although I realize it can sound that way. If you’ve been raised to believe that what you believe is RIGHT (and I was raised as a pretty firm Fundamentalist Methodist) then any doubting by someone else can sometimes feel as if they’re trying to question, or cut down, your beliefs.

A belief is SUCH a personal thing. You cannot CHOOSE a belief, it is — by definition — what you BELIEVE. I think because of societal pressures, ease of social mobility, the need to just get along in a family and community, some folks DO choose to believe what their family has all believed before them. I choose not to.

My belief is simple; whatever god there is can be found in the action of a human helping another human, or helping make the world a better place. Period.

So pray for me, or don’t, but please don’t feel badly if I would rather put my trust in Minerva McGonagall over Mother Mary. Professor McGonagall is definitely more my jam.

Don’t Cook For Me
Have I mentioned I’m 5?

I’m a picky eater. I eat well, and balanced, meals, but I’m picky. I hate raw tomato (cooked is nice) I’m not a fan of most cheese (too heavy for me) and beans are WAY too rich unless they’re mixed in with something else. Light beans, like green beans and half runners and even navy beans are great, but legumes with more oomph to them (lentils, chick peas, etc.) are just SO rich on my stomach that I’m generally sorry for days that I ate them.

A Nice Stew

I like meat, but not too much. A little bit of chicken, a tiny bit of pork. Just something to give the rice and broccoli flavor.

Spices are to be avoided. I’m a super taster, and when I put something spicy in my mouth I feel it for hours, if not days. I ate some pecans today that were not supposed to be spicy, but 8 hours later and my mouth still burns (see, radiation side effects…)

SO I am VERY hard to cook for. Once you know what I can eat, it’s pretty easy and I’m kind of a boring eater. Often Gerry will make himself and the kids much more exciting stuff, but leave me, happily, with three food items I know and love.

So when folks WANT to cook for me, I am very grateful and happy, but I also am on pins and needles. What if I don’t like what they cook? Will it be bitchy to say, ‘Oh, not a cheese fan!’ – I mean, don’t the ads on TV tell us that EVERYONE loves cheese? I can take it in small doses, and goat cheese is easier for me than cow cheese, but I’m just an oddball.

And, as odd as it sounds, I get SO MUCH JOY FROM MY FOOD that I don’t want to lose any of it, I want to eat what I love, and love what I eat. Once the cancer stuff is done, if you want to cook me a meal and try to get me to experiment, that is great. While I’m on the mend, I’ll just stick to the kinds of food that I’m happy with, that make me happy!

Conclusion
So now you know. I can be an ungrateful bitch, and I’m not thrilled with that aspect of me. But I hate to be beholden to someone for something that I didn’t really want to begin with, and am not really going to use.

One thing that happened today that made me INCREDIBLY GRATEFUL was that my biz partner, Kathleen, arranged for her hair stylist to come to my home and cut my hair SHORT. I’d wanted this for a while, but there is NO WAY I’m going to be able to sit in a salon chair for a haircut, let alone get there.

The cut, lovely, and my face is SO round with the Dex!

So Kathleen’s friend, Janet, cut my hair, and it is without a doubt one of the nicest things that’s ever happened to me!

And during the cut another friend, Beth, came by and gave Jasper a happy, happy walk, which was SUCH a lovely thing to do!

Believe me, I am UNBELIEVABLY grateful for all the love, the care, the gifts, the help with our situation. But I felt it might be important – ? interesting -? to share my feelings about gifts with which I struggle.

Women don’t often speak out like this, we’re supposed to clap our hands and say, “Oh my goodness, you READ my mind! This is EXACTLY what I wanted and I didn’t know it!”

But I’m not always willing or able to say that. And I know it upsets some folks.

And I’m sorry.

Damn. When will I stop saying I’m sorry.

So Damned Loved

Guys, I feel SO damned loved.

Yes, I know I just wrote this morning, but I have to write this.

Thank You Thank You Thank You Thank You Thank You

Thank You Thank You Thank You Thank You Thank You 

Thank You Thank You Thank You Thank You Thank You

Thank You Thank You Thank You Thank You Thank You

Thank You Thank You Thank You Thank You Thank You

Thank you from the bottom of my heart, from the bottom of my (incredibly sensitive) stomach, from the bottom of my energy (which I seem to reach earlier and earlier each day)

I am grateful beyond belief that I’ve been permitted – welcomed – into such an amazing community of folks who make things, folks who “get things” and folks who CARE!

Today Amazon delivered a STACK of boxes from my wish list, and it was as if I were having some kind of a Cancer Shower.  Hmmm, maybe that would be an idea for a newly diagnosed person about to undergo chemo?

I apologize in advance for the time it will take me to reply to the kindnesses of folks, I’m moving pretty slowly these days, and I’m exhausted by EVERYTHING.

And folks have been donating to the paypal, which is VERY kind, and VERY helpful.  We’re looking into getting one of our sets of wooden stairs leading to the house changed into a stair/ramp.

I’m probably going to be using a walker for at least 6 months, may be a  year, I’ve heard various things from my doc. One of the issues is the major damage to my spine, and we kind of have to wait to treat that until I can get the Lymphoma under control, and THAT has to wait until the tumor is more under control.

To be honest, THAT is most of what the $$ from the fundraiser is going, so I can have easy mobility out of the house. Whatever brilliance influenced the previous owner to act in this way, he put sidewalk ramps IN THE FRONT AND THE BACK of the house, so once I’m OUT of the house, I can very easily get to the garage or the front walkway.  Thank you, previous owner, I am grateful!

But today – TODAY – I am grateful for a huge, honking stack of packages that make me feel like a queen. I actually didn’t know how much I needed a bit of that feeling until I walked in the door and saw it.  THANK YOU!

Baking

Let’s find a happy place. No cancer today on the blog (well, not much) just a LOT of gorgeous egg, flour, butter and sugar!

Fondant Covered Chocolate Bundt

I love to bake. I always have. I’m kind of hit or miss, sometimes I do well, sometimes I don’t, but I generally always have fun.

Baking is only FUN for me if I give myself permission to screw up. So many folks don’t, they seek some kind of idealized bake, and they beat themselves up.

“Perfection is for fools and liars, everyone else is a realist” — Annie

Add to that all of the current baking shows streaming these days, with the numerous judges with their various catch-phrases “no soggy bottom!”, and many folks who EAT a baked good begin to think of themselves as a mini ‘Mary Berry in training’ and try to deep-dive into a critique of a cupcake. Which is just about the WORST thing a friend can do to a friend.

Just eat the damn cupcake, say “Thank you!” and shut up.

My Layered Chocolate “Autumn Flowers” Cake

But, being gluten free (something I’m struggling with right now as the circle of foods I actually WANT to eat is shrinking) I realized that if I wanted to have a piece of cake every now and then and NOT pay $7 per slice, I’d better learn to whip up a good, simple cake.

There are some amazing resources out there for GF baking. Two of my favorites are Shauna Ahern at Gluten Free Girl, and Jeanne Sauvage of The Art Of Gluten Free Baking.

In fact, one of Shauna’s tweaks of Joy The Baker’s Chocolate Bundt Cake has become my ‘go to’ for any kind of family celebration. I don’t make it as a bundt much anymore, I prefer to bake it in layers, freeze the layers, slice then thin and assemble a lovely striped confection. I love layers of flavor!

Hazelnut Hanukkah Cookies

Like so many folks around the world, I’ve been inspired by Love Productions “Great [insert country name] Bake Off” shows. My favorite, of course, is The Great British Bake Off (because it’s the one I knew about first) but you can look up other nation’s shows (Irish Bake Off, Australian Bake Off, etc.) and enjoy those, too!

One Year Ago
It was just about this time of year, last year, that I was enmeshed in the final stages of auditioning for Love Productions Great American BAKING SHOW (Pillsbury owns, “Bake Off” Love can’t use it in the U.S.)

It was, without a doubt, one of the MOST EXCITING PERIODS of my life. And that was just the audition process!

Around Christmas 2016, in the same well of pain that was wrenching our nation after the theft of our presidential election, I found a great deal of solace in ABC’s airing of The Great American Baking Show. Compared to the other LOVE offerings, it was a light-weight piece.

It’s almost as if LOVE couldn’t really grasp that Americans DO love to bake, that we’re good at it, and things DON’T need to be ‘dumbed down’ for us.  I think that we, as a nation, have a reputation for not being hard workers in the kitchen. That’s wrong.

Unfortunately, though, look at who was soon to be in the White House.

Apple-Apricot Custard Pie, Purchased Crust

No wonder the Brits get the idea that many of us are functioning idiots. Just listening to Paul Hollywood speak scathingly about “American Pie” in an episode of #GBBO makes my blood boil. Elitist fucking baker. It’s clear that he sees Americans as lazy, indulgent folk who’d rather buy a sugar-loaded Hostess pie than bake a light-crusted tarte tatin. His loss.

And, lest the Brits get too comfortable in their smugness, one word: Brexit.

Swearing On
Oh, this is a baking post, but I’ll be swearing and including some politics.

Because it can’t not happen these days. Sorry if that’s offensive, but I’m a bit beyond caring right at this moment, and ALL WORDS MATTER. Have I mentioned the gigantic tumor in my T10-T9 vertibras yet?  Sorry, no more cancer…

Almond Hazelnut Dacquoise With Baileys Cream

So, it was the holiday season 2016, I watched The Great American Baking Show, and recognized that the tent was THE SAME as used in #GGBO.

I wanted to be IN that damn tent so badly I could taste it.

I applied.

I didn’t expect much. It was a VERY long application, and I filled it out with lots of pictures and stories and anecdotes. The kind of stuff I figured they’d eat up, softy “I baked my family together during my husband’s cancer” and “Although I have fibromyalgia, I bike and bake with the best of them!” stuff.

And it was all true. It sounds like I was being calculating, but I was just being honest. Baking is my happy place, it gives me solace, and the fact that it’s temporary (hopefully eaten within the freshness date…) only makes the joy more poignant.

Birthday Cupcakes

For a few weeks after sending in the application I’d confess to friends, “I APPLIED for that show!” but I didn’t really think anything would come of it.

June
While on the road in Ohio between fiber shows and a trunk show, I received a few mystery telephone calls and ignored them. Folks who know me know that I’d rather pull out my fingernails than try to hold a phone conversation with a new person.

But after ignoring these calls for days, I thought I should listen to the messages, and it was a producer from Love Productions requesting a phone interview. Things went quickly after that, one phone interview, another one, more information passed back and forth.

LOVE Productions wanted me to fly out and do an invited cattle call audition, but the only time that worked with our schedule was in Portland, OR. This was on my dime, so I was grateful that Kathleen was cool with me using some of our MKY frequent flier miles to cover my hotel. Thanks, K!

All through this process she kept saying, “Whatever you need to do to make this work, WE WILL MAKE IT WORK!” How lucky can one woman get in both a business partner AND a husband, my two strong supports!

Boule and Tiny Baker

I was supposed to bring three bakes to the audition; A cake, a non-cake and a loaf of bread for which I was given skeleton instructions (just a list of 4 ingredients) and nothing else.

I chose to bring a gluten free bundt cake and some puff pastry palmiers in addition to the bread (Paul Hollywood’s recipe, I recognized it…)

The bread was a BOULE, a shaped bread that raises in a bowl and has a rough, peasant crust with (hopefully) a light inside.  I couldn’t EAT the bread or puff pastry I made every day to practice, but my family did, and they were grateful!

Mum
I wasn’t supposed to talk about the whole thing, so I didn’t, for the most part. I told my family and Kathleen, of course, and another friend who gifted me with the tiny, lego baker hiding behind the boule above. She became my little talisman, traveling with me all over the place and making me feel at home and loved no matter where I baked!

Puff Pastry Palmiers

The Portland Interview was really fun, no baking but lots of talking. They REALLY asked tough questions, it was a very serious interview. Then after that they did a short, 7 minute videotaped interview I bonded with “my” producer, Jordan (“you’re SO MUCH LIKE MY MOM” is a lovely compliment), and left feeling like I’d had a blast!

Traveling back to MN I remember thinking, “If this ends now, I would be happy just to have been part of this process so far!”

And that is a WONDERFUL place to be!

Not Over
But it wasn’t over!

I heard the following week that they wanted me to fly out to LA for some videotaped baking auditions, THIS time they were paying, and THIS time I had to bring six matching Flooded Cookies along with a short video I made of myself with my family.

Here, ladies and gentlemen, for the first time I give you ANNIE’S AUDITION TAPE!

The password is GABS (all upper case)

FLOOD
You can see how nervous I am in the video, but we got it finished and sent out, and I headed to LA with my SIX MATCHING FLOODED COOKIES!  Actually, I took 8, which was good because at one point I dropped my box and broke two…

Six Heart Cookies In The Hotel

My cookies were HUGE! For luck, I actually used the copper cookie cutter set I’d acquired when I was working at Martha Stewart Living in the Art Department of the weekly TV show. I figured any kind of MoJo Martha could slip along to me would be worthwhile.

BTW,
Happy 77th Birthday,
Martha Stewart!

The other folks had these nice, small, tasteful cookies that looked like soccer balls and cars, and I had GIGANTIC HEARTS that we could have used as alternative seating at the chi-chi retro hotel they put us up in (just blocks from The Brady Bunch House!)

I followed a few YouTube videos on flooding cookies (apparently I did it differently than my compatriots they all had definite lines around the outside of their flooded areas, I really just wanted it to be smooth with no noticeable line or bump.)

After my flooded icing dried for a FULL 24 HOURS under a blowing fan, I made some stiff white royal icing and used a technique called “Brush Embroidery” to create the flower shapes.

A Single Heart. 6×8″ of Delicious Beauty!

It really wasn’t that hard, or even complex. But, like just about anything that takes technique, it’s a matter of breaking the steps down, and doing each one well. I found Sweet Amb’s tutorials for this technique VERY good!

In the case of this specific cookie the serrated edge of the cookie cutter was a bit of a bitch, but I also think it MAKES the cookie!

Then they broke us into groups and, six at a time, we were taken to kitchens with industrial ovens and given places at tables filled with all the ingredients we’d need to make a butter cake with light mocha frosting.

3 Hours. No Nerves.

Copper Heart Cutter

The woman in charge of talking to us about our recipes made certain to say, SEVERAL TIMES, that she wanted LIGHT mocha frosting.

I, of course, added WAY too much espresso powder to the frosting when I made it and it was too dark. I fear that this was the determining factor in NOT getting me to the UK.

Perhaps it was something else, probably my personality, or 50 extra pounds I should’ve lost, but as far as MISTAKES go, that was my most glaring.

Baking the actual cake was a blast. I was paired with a wonderful baker, the two of us really worked well together, we were funny, charming, we we a ‘team’ and I think we both raised each other’s level of baking.

This, THIS MOMENT, this was the moment I wanted to experience. And I did.

Baking with a new friend, learning and having a blast, THAT was the experience I was hoping to get from The Great American Baking Show.

Oh, Johhny
When I didn’t make it on the show, I was sad.

I found out in Dallas.  Gerry and I were there for an International Myeloma Foundation Group Leaders Summit (Ironic, nu?), and the phone call came before dinner one evening. It wasn’t 100% unexpected, even though I felt I’d ACED the audition, and all things considered it was a pretty easy letdown.

We went down to dinner and I danced the night away, compelling EVERYONE I met to look at my baking shots at some point in the evening. “LOOK AT MY COOKIES!” I would yell at anyone new who walked into the room.

I guess we all cope in different ways.

But, even sadder than ME not making it on the show, was ABC’s insane decision to CANCEL the show based on the actions of one of their judges 10 years earlier. Apparently Johnny Iuzzi, in his capacity as a chef around 2006, had thrown a canister from a foam gun at a female employee in an altercation. Not cool.

That was DEFINITELY beyond harassment, but it didn’t seem as it was overtly sexual in nature. But it WAS a dick move, and domineering and wrong.

Was it worth cancelling an entire SEASON of a show so that all the folks who had done the work I’d done, plus FIFTY TIMES MORE, didn’t get their time on air?

No. I think ABC overreacted badly. I think there would have been a way to RUN the show, and at the same time RAISE AWARENESS that Johnny’s behavior will not be accepted. But that kind of courage is something one seldom sees in Network TV.

But I also know that for each person who made it in that tent, the magic that HAPPENED in that tent was what they REALLY wanted.  If there were a GBBO camp I could go do, not get on the show, just DO THE CAMP, I would do that in a heartbeat! I crave that kind of baking fellowship.

Knitting Will Be My Jam For Now

Back To Cancer
Unfortunately, for the past six months or more my back has been INSANELY sore. I obviously didn’t know what it was, but it’s really hard to bake when the back is in pain, so I’ve been baking less and less.

Ironically, I’d read an article in the Spring about organic wheat use vs. gluten free flour, and I was experimenting with OW on the hope that perhaps my problems with gluten really sprang from the use of Round Up in wheat harvest and NOT in the gluten itself.

Going Forward
My experiments were delicious (I MADE BREAD THAT I WANTED TO EAT!) but coincided with the extreme pain of my tumor, which I thought was fibro, so I stopped the Organic tests.  Now I’m thinking maybe I’ll try it again in a bit. It would be lovely to NOT have a problem with gluten, but with Round Up instead, and KNOW how to control it better by avoiding non organic wheat!

A Happy Resolution!

So much sad, sad, sad isn’t good for the soul.  Or good for a blog.  This post will NOT be about pain or fear or cancer. It will be about CONVECTION OVENS!!

Home Sweet Downsize!

The Setup
When Gerry and I purchased our beautiful home in 2016, our goal was to downsize to the point (both in house size and in less desirable location) that we could get close to the ‘paying off the mortgage’ portion of our life plan.

As I’ve mentioned, Gerry and I are frugal bunnies. The priviledge to even BE able to be frugal is something I don’t take lightly, I KNOW exactly how fortunate we are. We live in a messed up country, in a messed up world. Paying attention to blatant unfairness it’s a step in the direction of fixing it.

The kids had SOME say in the house, but mostly we allowed them to go along for the ride. Their home is here for as long as they want, but we couldn’t afford to make it TOO comfortable for them to come and stay.

The Warrantee

You Say Garage, I Say St-St-Studio!

Along with the home, and the magnificent garage, er, dye studio, we acquired a home warrantee on several of the appliances. I hadn’t thought much about warrantees before, but this one has worked out beautifully for our family.

The range was on the warrantee, and it had been baking kind of funny, there was a light bulb out that couldn’t be reached to be replaced, and we were STUNNED when the warrantee fellow came out and said we could get a new range, and gave us a number that they would pay us to go get ourselves something.

We shopped online, we shopped in stores, we knew we wanted a bit of a grill, a bit of a griddle, and —if possible — my dream of a convection oven.

The Range
I know fan, or convection, ovens can be a tricky subject, but I wanted one, damnit. I mean, not enough to turn down a lovely stove that DIDN’T have one, but if one came with our stove, so much the better!

We decided to shop at SEARS online after seeing this item on their website. We ordered it, it was delivered in early January.

I wasn’t at home at the time so Gerry accepted it on his own. We weren’t paying for SEARS to install it, so they pretty much dropped it off and took our old stove away.

The WRONG Range
EXCEPT the oven they dropped off did NOT match the description.  No convection oven.

I immediately started an online chat with the SEARS folks, who seemed as surprised as I was that this range did NOT have a convection oven.

We went back and forth, I could tell the Customer Service Rep was feeling like he was between a rock and a hard place (my god, what an absolutely dismally difficult job CSR is!)

So apparently the range we bought, JGSS66EELSS was NOT the range we’d thought we were buying. And apparently SEARS said it was our fault, or that it wasn’t THEIR fault.

Of course we needed to escalate the situation.  SEARS told us, rather nastily, that the number of the range we’d ordered WAS NOT a model with a ConvectionOven.  They said that they had a typo on their website, and they would NOT honor a typo.

Refusal To Help
Except, even after we’d alerted SEARS to this, they KEPT that damn “typo” up for months.

The emails we were getting from SEARS were getting nastier and nastier.

Essentially they said, in several different ways, “Look, you got a good deal on a range, just shut up and go away.”

They offered us $100 to shut up, and told us that we HAD TO ACCEPT THAT $100 WITHIN 5 DAYS OR THEY WEREN’T PLAYING. Jerks.

Uh, no.

They repeated their offer with $200. Then with $400. Each time we said, “No, we want the range that you advertised. We will NOT let you get away with Bait & Switch.”

We stood strong, we were in no rush and — in all honesty — we really loved the range we had purchased. But it WAS NOT what was advertised. What was advertised was the range we ordered PLUS a convection oven.

Reinforcements
About a week into this nonsense we asked for the help of our State Attorney General, Lori Swanson. I hadn’t realized that one of the duties of the SAG is to protect consumers in their state, and BOY did Erin, from Lori’s office, work to protect us!

Our Lovely Stove. Take THAT, Kathleen!

Patiently, slowly, her staff kept after SEARS. She took the case seriously, giving it the amount of time it needed, but also letting it roll on it’s own. I was impressed with their restraint and strength.

Right around that time my business partner, Kathleen, had her kitchen redone after bad ice dam damage from several years ago. Thank you, home insurance company!

It’s ON!
Kathleen GOT OUR STOVE! She ordered and had delivered EXACTLY the stove we wanted, so it was ON! There was no way I was not walking away without my convection oven.

Actually, given the state of my back this Spring, perhaps that is NOT the best way to acquire and bring home the oven… 

Morning Treat for Post Radiation!

Convection Conviction
Well, HUZZAH!  In April we were alerted that we had a “final offer” of $450, and we said, “No. Convection Oven.” And SEARS said to Lori Swanson’s office, “Ok.”

 

And that is why I am up at 5am before my radiation, so I can throw some low-sugar cookie dough in the oven for TEN MINUTES and have a half dozen cookies to snack on after my time on the laser table today.

Thank you, Lori Swanson, you and your office really stood up for us!

And SEARS, you SUCK! 
Even if you DID do the professional installation gratis this time…

Just do the right thing from the start, and you KNEW that honoring your website description (up for at least 4 months) was the RIGHT THING!

Tomorrow I’ll write about how I became so enmeshed in the Fan Oven love, and my journey a year ago to attempt to become a contestant on The Great American Baking Show! (spoiler, I didn’t make it…)

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.