Beasts & Dragons & Maps

It’s the end of Chemo Week 1, and it’s been surprisingly good!

I love a good map. Right now my online friends are drawing one up for me each and every day.

Here Be Dragons
Not having gone through chemo before, I don’t have a point of reference for how this would have felt without the amazing anti-nausea meds that are available now.

Someone described their chemo experience on my Facebook page as “flu-like” symptoms, and for me that’s definitely been the case.

These “Cyber Sherpas” help me much more than they’ll know.  And I take their advice with gratitude, with love, and with a grain of salt.

I look things up, I ask my doctor about some of the suggestions, and one or two things my doc has pooh-pooohed.  However, for the most part the assistance of folks who’ve walked this walk before me is golden, and my doc & the chemo nurses let me know how lucky I am to have a wide and world-encompassing body of Volunteer Guides.

The Best Laid Plans
Right now I’m supposed to have a tiny little pump filled with a drug called Neulasta chugging away on my stomach, but unfortunately it fell off in the midsts of 100% humidity and so much internal (from my hot, hot, body) heat.

Neulasta Pump

So instead of the pump I’ll be returning to St. John’s Cancer Center tomorrow for a Neulasta shot.  I mentioned this on Facebook and immediately received several suggestions to help deal with the bone pain the drug may cause prophylactically, and that kind of back and forth between me and folks who’ve walked this walk are priceless to me.  To be honest, I didn’t even KNOW there might be bone pain involved in this phase of the treatment, I am SO grateful to my online friends for pointing this out!

Claritin & Tylenol, at the ready, Barb!

Help From My Friends
I’m not looking for a “real life” support group right now, I don’t have the energy to get someplace on a regular basis, to meet so many folks, and—most important—I’m desperately trying to avoid other humans as I move into the phase of my recover where it’s quite easy to get an infection.

My white blood cells have been reduced because of the strong drugs I’ve been taking into my system 24/7 for the past 4 days, and a low WBC count = an opening for some galloping infection.  Time to call the cavalry.

Our family has been living with a higher likelihood of infection for years.  We take this into consideration with Gerry’s heath and also because of my Fibromyalgia.  When the kids were in high school, it felt as though every day brought a new cold or flu to our household.

I learned then that to venture out into the world Gerry and I would both need to use a battalion of helper soldiers (Emergen-C, Airborne, hand sanitizer, etc.) and that has been helpful in allowing me to keep teaching around the country from fiber show to fiber show without picking up something bad and bringing it home to grow.

But now, with the Lymphoma, getting an infection is more serious.  The Neulasta is designed to help with that, and according to my impromptu online support group the Neulasta can cause some pretty incredible bone pain.

Fear has it’s uses, but cowardice has none. — Ghandi

This is a bit of a rambly post, I think that has a lot to do with a week of very little sleep and a LOT of chemo drug therapy.  In the coming week(s) I may need a transfusion or two to help with my strength.

But what I DO want to convey in this post is my gratitude to all of you who have traveled on this road, and have reached out to me, showing off signposts and short cuts along the way.

Thank you.  You make me feel braver than I am, and I am grateful!

The Places In My Neighborhood

In 2016 we decided to downsize from our lovely home over in the Crocus Hill area of St. Paul to the East Side, by Lake Phalen.

It’s a different neighborhood — slightly less ‘well off’ — but dynamic and beautiful.  It’s an area where folks have lived for generations, and new folks are moving in and starting their own traditions.  We really love it, and love the neighbors we’ve met along the way!

I’m supposed to try to get out and do some walking each day, to keep my strength up and make it easier to transition back to ‘healthy person’ when this cancer thing is over.  For years WALKING has been so terribly difficult for me, it’s one of the reasons I’ve become an avid cyclist. But with my walker, it’s much easier to get around.

Hopefully I won’t be walker-bound forever, but right now it makes life much easier.

So each morning as soon as the sun’s up I get out for a nice walk in the cool of the morning.  Here are some of the sights I see on one of my daily walks:

Big Beautiful Sunflower With A Bee, Down The Block

Hmong Neighbors Mean Nice Pho!

I’m attached to my pump through my port

My Chemo Pump Is My Constant Companion

I LOVE This Tidy Bungalow!

Lovely, Shady House With Happy Fence

 

The Pain Drain

One thing about this whole cancer adventure is that I can’t really know what to expect on any given day.

It’s a huge mystery, and it seems that there are as ways a cancer journey can unfold as there are folks who’ve had cancer.

I had THOUGHT that once we got my pain settled with the 3x Oxycontin + as needed OxyCodone, I would be good to go.  And that worked for a few weeks.

But apparently because the tumor in my spine had metastasized again into my hips and tailbone, and it brings a whole NEW tenderness and sensitivity.  I wouldn’t have chalked it down as actual “pain” until today, when the sensation definitely grew into a pain situation.

My morning adventure was getting X-rays at St. Joseph’s hospital, then seeing my neurologist to discuss the X-rays, and then a drive over to St. John’s Cancer Center for a refill of my chemo pump medications and home for resting.

Unfortunately, St. Joseph’s is one of those old-type hospitals in a downtown area that is actually a series of buildings that have been cobbled together into one unit.  This means that there are very few DIRECT ways to get from one department to the next, so my walk from the entrance to Radiology, and then another walk to the Neurology dept were BOTH extremely long (involving several elevator rides and lots of walking)

And this caused me extreme pain.  It wasn’t the walk as much as it was the big brace I had to wear, which pushes down on my hips in a MOST uncomfortable way, and causes me to sweat like a Swede in a sauna.

Seriously, you could have WRUNG OUT the T-shirt I was wearing under the brace,
and heat causes my skin to bleed (I’m a redheaded weirdo)
and THAT causes a great deal of pain.

It was so bad that I got a special dispensation to only wear the brace for comfort reasons. I’ve been pretty good about wearing it whenever I travel in a car, or when I’m walking around outside, but with the advent of the hip pain I must admit I’ve been leaving it off as much as I’ve been wearing it.

I feel very fortunate that my neurologist is taking the fact that the brace is CAUSING me pain seriously.

But it’s been hard to climb out of the hole of pain in my hips that I slunk into this morning.  I know that after I’m able to get a decent night’s sleep the pain will begin to resolve itself, but right now it’s a cold, hollow pain that fills both hips, it’s probably time for a lidocaine patch, to be honest.

Pain is such a game changer.  It feels good to discuss it, but I also know how boring it must be to open my blog and read, “Pain, blah, blah, blah, PAIN!” But that’s my reality today.  Which is so weird after a few weeks of very decent pain control.

It also makes me wonder if the chemo pump drugs I’m on are having
some kind of effect on my pain meds, perhaps undercutting them in some way..?

Tomorrow I meet again with my Radiational Oncologist to discuss returning for MORE radiation treatments to deal with this pain, and to deal with the metastasis of the spine tumor.  This whole thing sounds so danged scary, but each and every nurse and doc and health professional I deal with has been NOTHING but hopeful that all of this is just part of my own, personal cancer journey.

I appreciate their hope, it gives me a lift, and makes my days a bit easier.  My nights, however, continue to be honeycombed with pools of pain and fear.

On a personal/work level, I am feeling terrible that I’ve not been able to swim above this pain to get more done on the website.  It’s like I can’t 100% focus on anything but — well — pain.  That’s what pain is, I guess, a big, fat element of life that steals all the focus from everything else.

And, by comparison, the pain I’m feeling is actually much LESS than the pain I was feeling for most of the Spring/Early Summer.  It’s just that now that it’s attached to the word “Cancer” it’s as if the pain has a deeper color, a scarier hue, and it can be alarming.

Chemo Day 1, Done & Dusted!

I’ve been pretty nervous about this chemo thing, nervous for many reasons.

70’s Movie Fest
First of all, I grew up in the 60’s & 70’s, I watched Brian’s Song and Death Be Not Proud and Love Story.  I watched Terms Of Endearment and Garbo Laughs and a plethora of other movies.  Oh, and the TV ad parodies…

Gee you’re swell!
Guess what? No one fucking lives in those movies.  NO ONE. It sets a kid’s head on a bit crooked to only ever see folks die in ‘cancer flicks,’ but that was the 70’s.

Even after experiencing the magic that is a “partial recovery” in my husband (well, recovery until his cancer reemerges every 3-5 years…) I find myself terrified that chemo = end of life.  But it doesn’t.  And I have to keep telling myself that.  It’s something I KNOW, but I still have to repeat it to myself.

Thank you, every made for TV movie I ever saw in the 70’s, for NOTHING.

Plus, in all those movies folks just get sicker and sicker.  They get sick ALL OVER THE PLACE, then they have a lot of pain, then they get sick again.  Then they die.  That is the script.  “Blech, ouch, bye.”

Not MY script.

Any Exhaust Port…
I was also fearful today about the port they had “installed” into my chest cavity a few weeks ago.

The first time they tried to use it, apparently there was swelling, but today after a bit of working around it was able to go just fun.  Huzzah!  Now I’m attached to a pump so I’ll be receiving the chemo meds all night long (Yo, check this Bitchie, Lionel Ritchie!)

I need to take a moment to talk about my Chemo nurse, Jennifer, who was SO damned amazing and wonderful and made my day good and special and positive.  THANK YOU SO MUCH, JENNIFER!   You did an amazing job today, and you settled the hearts and minds of myself, my husband and “Kid Caregiver” (Andy’s new moniker)

Tomorrow I’ll go back to the pump room to get more drugg-age to be pumped into my body and into my soul.  All night long.

Where Are We, Exactly?
Tomorrow I’m ALSO going for some kind of special big-time Xray at St. Paul Radiology so they can get a very good look of how my Spine tumor has dealt with the death ray we like to call “Radiation Therapy”

We just keep looking for the exhaust port in this Tumor so my tiny little Luke Skywalker can send some radiation torpedoes down it.  Tomorrow we see how successful those X-wings have been.

I’m nervous about what we’ll find in the Xray, but it’s a vital part of the recovery. Assessing how the therapies are working.

Lumbar Madness
On Wed I have yet ANOTHER Lumbar Puncture, with one each and every Wed after that for a month. And I have Jennifer, my amazing chemo nurse, chasing down anesthsia for each and every one of those punctures. THANK YOU, JENNIFER!

Why all the lumbar punctures? Assessment. We need to see what’s going on in what has become a pretty fast moving cancer ride.

The BIG Q is, “Is the cancer actually IN my spinal cord.”
Let’s just keep hoping the answer to that question will remain, “Nope!”
I told you the news last week wasn’t terrific. But I WOOL SURVIVE.

So every Tuesday evening will be a Dance party with Gloria Gaynor & Lionel Ritchie.  Let’s throw some 80’s Joan Armatrading in there for the Carrib beat.

“I’m lucky, I’m lucky, I’m lucky
I can walk under ladders…”

So that’s my upcoming week, and I am READY to go.

Breathe, Damnit!
Today during my chemo I had a bad reaction.  Not terrible, but not great.  When they sped up the infusion, my body responded by trying to shut down my breathing.  Gerry rushed to the chemo ward with my breathing meds, I was given a nebulizer treatment, and they slowed the chemo down to 50 again and all was well.

So I’ll be getting my Rituxan rather slowly, and that’s okay.  And I just realized I forgot to take my long-lasting Oxycontin OR my breakthrough pain Roxicodone.  It never ends, does it…

My Favorite Story

Gather ’round, kiddies, it’s time for Granny (me) to relate the famous story of How I Met Your Granddad.

I’m writing this as if future me is telling
yet unmet grandkids our story,
because that’s the dearest wish of my heart;
that I will someday be able to meet a grandchild,
and hug them,
and teach them cool stuff.

There was a popular 1980’s movie starring Mark Linn-Baker and Peter O’Toole called, My Favorite Year  It’s a lovely, warm film about a young, father-less, TV writer’s first real job in the industry, his adventures with a movie star who he has long idealized as the ‘perfect dad’ and the way he deals with the disillusionment of learning your heroes have feet of clay.

Go — watch it — I’ll wait.

I love that movie. It came out the year I graduated from college, I thought I wanted to work in TV, and I love Peter O’Toole.

Fast forward 10 years, it was 1992 and I had just been awarded my MFA in set and costume design AND had been initiated into Local 629 United Scenic Artists Union (USA)

Mom, I MADE IT!

After spending the summer designing costumes for a huge outdoor theater fest in central NJ, I’d snagged my first real job on Broadway as a costume assistant on a musical based on My Favorite Year, to be staged at Lincoln Center.

The size of the house determines whether a play is on or off Broadway, but my memory was that this was designated a “Broadway” production.  I may be mis-remembering.

Working with designer Patricia Zipprodt, who I’d long admired, was heady stuff. Even more heady was being assigned to be the “shoe buyer” for the whole production

There were some triumphs (finding shoes to fit tiny male dancers’s feet, shoes which were perfectly in period and beautiful!  Thank you, Nordstroms!)

Mr Curry On Stage, Comfy In His Well Broken-In Shoes

And some debacles (getting shoes re-heeled in the wrong size so the dancers kept getting stuck in the ‘tracks’ along the set – dang!) 

But anything I did wrong was fixable, and I did a LOT wrong.  But I did some stuff right.  And I learned SO much. And it was my first BROADWAY SHOW.  And I was happier than I’d ever been in my life.  It was a reason for celebration, and my mom and her good friend Ruth Clark flew out to witness my triumph as 4th person mentioned in the program under Costume Assistant.  Could life get any better?

When one works in costuming, the day the show opens your job is essentially over and wardrobe (a different union) takes over.  So upon opening of My Favorite Year I finally had my weekends to myself and began pondering what would be next in my brilliant career as Broadway Shoe Buyer.

THIS is how one pays for that $20,000 degree in folding
I’d just acquired at Rutgers, one shoe at a time.

In a side note, the star of the musical, Tim Curry, happened to wear the same size shoe as myself (European 42)  He had MANY pair of shoes, and I was responsible for breaking them in, which was fun and pretty damned cool.  Yes, I have walked in Tim Curry’s shoes, and I can say that he was a delight to work with!  And thank GOD none of the shoes were stilletto 6″ heels.

Hirschfield sketch from the NY Times. Heady stuff.

Also in the cast were my personal heroes Andrea Martin and Lanie Kazan.  Could a young wanna-be designer get ANY luckier than to be able to work with such a kind, funny and exceptional cast?

The show opened in Fall 1992, and not long after I found myself at home, in my teeny-tiny Brooklyn apartment, listening to NPR on a Saturday morning and calling in to try to become a contestant on the Wisconsin Public Radio game show, Whad’Ya Know? which was broadcast live from Madison, WI.

I actually got on the air, and I answered the qualifying question (“Which couple was the first to SHARE a presidential bedroom, not have separate rooms for President and First Lady?”) by, basically, begging the host, Michael Feldman, for the answer.  (The Fords)

Home Sweet Tenement, 106 President Street, Apt 2R, Brooklyn. Or, as my father in law called it, “The Love Grotto”

I was paired with a fellow from the studio audience named Tom, and together we proceeded to win the BIG KIELBASA of prizes.  I’m afraid that I talked pretty much non-stop, which I do when I’m nervous (and when I’m not)  I’m a talker.

Poor Tom didn’t stand a chance.  I think he was able to say maybe 2-3 words.

I talked about me, my hair color, my purse, being from the midwest.  I talked about Kilroy (as in Kilroy Was Here) and driving and making two different types of stage blood (edible and washable)

I did NOT shut up.

And we won!  I don’t remember if we shared the same prizes, but my own prize pack was a book on tape, a cat toy, a 36″ inflatable figure from the Edvard Munch paining, “The Scream” and a tiny chocolate cow.  All of them VERY Wisconsin Public Radio type of gifts.

And then I promptly went on my way, dining out on my very exciting
story of When-I-Won-A-Cat-Toy-On-NPR, which tells you a bit
about my friends at the time, and didn’t think much more about it.

UNTIL a few weeks later when, leaving my Brooklyn apartment for a long 3-bus trip to NJ to visit my dentist (I’d moved from NJ to Bklyn in late Summer, and still had some filling work at the U of NJ Dental School to get cleared up.) I discovered an odd letter in my mailbox.

My dentist was Vinny, a southern NJ cutie who was just about the most handsome dentist I’ve ever met.  I loved Vinny, we had a great rapport and he did a lovely job on my teeth. There is NOTHING like a handsome dentist to get a girl to floss.

So stopping by my mailbox to pick up reading material for the bus rides, I was confused to find an envelope with a Queens, NY return address, but a postmark from Madison, WI.

The letter was — Odd. This was happening during and after the 1992 presidential campaign, and the letter opened with a quote by Admiral Stockdale, Ross Perot’s running mate, which (being a bit of a politco) I found amusing.

“Who am I?  Why am I here?”

Then the letter went on to explain that the writer was in fact living in Queens with his brother after recently relocating from Vermont, but had heard me on the radio and thought that he would like to meet me.  He stressed that he had NO IDEA where I lived, that Ruth Ann Bessman, the producer of Whad’ya Know, had agreed to forward his letter on to me.

So there we were.  Would I like to get together and meet?  He understood if I already were seeing someone, but he thought I sounded “nice” and “funny”

I had NO idea what to do.  I showed Vinny the letter and he thought I should just walk away.  I showed a group of undergraduates from The Stern Yeshiva For Women (the cast of a production of the Dybbuk I was designing) and they all thought it was VERY romantic!

I showed my married friends, and my single friends, who pretty much lined up with married friends warning me off, single friends saying, “Go for it!”

I compromised by sending a Christmas Card.  And I waited.  And apparently the card got lost under a stack of mail at Gerry’s brother’s apartment.  When he finally found it, it was late December.

So Gerry called, we met at the famous Peacock Cafe in Greenwich Village just to have a cup of coffee and scope each other out.  The date was Dec 23, 1992, and on the way I ran into a friend and cast member from My Favorite Year on the subway and told them all about my upcoming adventure.  They told me they had a really good feeling about the meeting.  They were right.

All I knew about Gerry was he was 5’9″ and had a beard.  At that time I was about 6′ and was at my thinnest (I think for about 36 minutes in 1992 I was a size 12, this was that period) so I figured my height wouldn’t be a deal breaker.

This is how tall women used to think about dating smaller men;
if our body mass is relatively equal, it will be okay.

I, being a Virgo Methodist from Ohio, showed up early. I swear that EVERY man in the greater NY area who was 5’9″ with a beard was at the Peacock Cafe.  It was a veritable CONVENTION of them. I should note here that Gerry INSISTS that he NEVER told me he was 5’9″  But I swear he did. And I also swear he WAS 5’9″  So there.

With my recent compression fracture in my spine, I’m currently 5’9-1/2″,
so I understand how important that half inch is.

After asking, and dispatching, a number of bearded fellows, I looked up at the front of the restaurant and saw the sweetest guy looking SO nervous in an ill-fitting jacket. My immediate thought, “I can work with that, I can make him look better…” 

I walked up and asked him, “Are you Gerry?”
Gerry: Yes.  Annie?
Annie: Yes.  I have a table in the back, it’s a bit nicer, let’s move there.

And that brief conversation set the tone for our entire relationship.  We can always do better, and let’s move to my table.  Odd, how those things resound through the years.

I don’t remember Gerry eating anything, but I had a bowl of Minnestrone soup and it was delicious.  Then we went for a walk around the village, and ended up at the Prince Street Cafe.  It seemed like a nice date, but nothing earth shaking.  And then we noticed that all of the chairs were upside on the tables and the wait staff was eager for us to leave. We’d closed the place down, and I felt as though I’d been talking to one of my best friends for 3 hours.

Gerry walked me to my subway stop, a brief little peck on the cheek kiss, and we agreed to get together again.

Of course, that proved to be more difficult than we’d expected.  Crossed wires left me with NO DATE on New Years’ Eve (for whatever reason, after asking me if I were free on NYE, Gerry felt that he was supposed to WAIT until I called him. I assumed he would call me, since he brought up a party he wanted to take me to…  Poor, shy, Gerry.)

We did have a few dates in January, then I asked him over to dinner on Feb 13 so we wouldn’t have Valentine’s Day pressure.  I made him my mom’s fried chicken with some veg and some starch.  Nothing spectacular.  But he fell in LOVE with it, and it’s become his favorite meal to make for me.  Gerry does most of the cooking in our household these days, he’s exceptional at it, and whenever he makes this for me it’s as if my mom is cooking dinner, and it’s lovely.

The Feb 13 date was when I realized that I loved this guy.

Not long after that I headed to North Carolina to work on a Japan-bound Arena Stage Production called LUCAS LIVE!!, featuring scenes from several block buster George Lucas films. My job was to make the Wookie costume and mask.  It was spectacular.

While away, I asked Gerry to cat-sit as I had found a stray a few months earlier, and evidently she got knocked up, and kittens were on their way.  I didn’t want to leave her alone.

One day upon returning to my hotel in Carolina, I had a message at the front desk, “It’s a girl, it’s a boy, it’s a girl, it’s a boy, it’s a girl!!” and the clerk said, “I REALLY hope we’re talking about some kind of animal…”

By the time I returned home, Gerry’d settled in, and he never moved out.  My neighbor across the hall, wonderful Rose Verde, had lived in a 600 sq ft apartment (the match of mine) and had raised 3 kids there.  She kept an eye on me, watched out for me, and was VERY concerned that Gerry and I were living together.  I promised her we’d be getting married, and then it occurred to me I should pass that by Gerry.

He agreed.

So much for romantic proposals.  It doesn’t matter in the least, because when you know, you KNOW.

We called my mom on Mother’s Day to share the joy with her.  My mom, a lovely and kind person, was also a child of her environment.  She was born in 1919 in West Virginia, her father had been in the Klan (although “only for a week, until he figured out what it was!” my mom always insisted) and, although she and dad had several Jewish friends through his business, she was a product of a different generation.

I knew we’d have to handle the matter delicately.

Me: Mom – I’m calling to tell you that I’m in love!
Mable: Oh, honey, I’m SO happy for you!
Me: There are three things you need to know about Gerry, though…
Mable: Ok…
Me: Number one – we’re living together right now.
[pause]

Mable: Well, you KNOW I don’t like that!
Me: Which is why I’m calling to tell you we’re getting married in August!
Mable: Well, that’s a relief!
[pause]
Me: The second thing is — he’s Jewish.
[pause]

Mable: Well, you wouldn’t be the first…

Please note how absolutely enlightened this is coming from someone like my mom.  I like to think Mom was just thrilled that he daughter wasn’t a lesbian.

Me: The third thing is — Gerry’s shorter than I am.  By about 4 inches.
[pause]
[pause]

Mable: Oh, honey.  Oh, HONEY.  Are you SURE you love him?

So the biggest problem my mother had was with Gerry’s height.

Eventually Gerry became so deeply entrenched in my mom’s
(and Aunt Wanda’s and Cousin Jan’s) hearts that they told me if we ever divorced,
THEY would get custody of Gerry.  Thanks, family…

And THAT was how Gerry and I met.

One of the plot points of My Favorite Year was that it was the year the protagonist began his career AND found love.  And the same thing happened for me.  Which is why 1992/93 will always be my OWN favorite year!

This Monday will mark 25 years since Gerry and I were married in Judges chambers in Brooklyn.  The next day we had a more spiritual ceremony with no minister, but led by my best friend and his brother.  A lovely day.

We remain two of the luckiest people in the world.  At this point we’re sharing cancer (he diagnosed with Multiple Myeloma, a bone marrow cancer, in 2006 – myself with Lymphoma, a blood cancer, diagnosed this July) but I wouldn’t trade anything for our 25 years together, and our amazing family of gingers.

Max and Andy at Uncle Joel’s & Aunt Takako’s Wedding

I love you, Gerry.  You make me the happiest woman in the world every day!

A Uniform

Uniforms are something I don’t have a lot of experience with.

Just a bit of hand sewing to go!

I never wore one in school, even in gym class we were able to wear whatever we wanted (that had changed a few years earlier, much to everyone’s great joy!) and my few forays into the fast food industry in my teen years were about as close as I got to life in a uniform.

But now I want one.  I want a Chemo Uniform.

I want something that’s easy to put on, take off, wash and just NOT THINK ABOUT.

Perfection would be a pretty linen dress that’s a big apron with lots of pockets. So I made it.  I may make another (in a different fabric) because this is going to be going on for more than a few months, and I just don’t want to have to spend time deciding what to wear each day.

So after pondering many images on pinterest, considering the important elements that matter to me, I pulled out some Laura Ashley fabric that I’d had squirreled away for almost 20 years and got to work in the wee hours.

Sleep comes around 9 or 10pm, and I enjoy it.  Then around 2 or 3 I wake, around 4 I get incredibly uncomfortable in my bed (laying can make my back ache, especially now that there are MORE tumors that have appeared in my hips and tailbone) so I get up and sit, read, knit, just change my position.

This morning my position was at the dining room table, sewing away on a machine I purchased last year at Stitches Midwest, and I finished my little dress in just a few hours.  All that time working in costume shops pays off when I want to whip up a new dress idea!

I’m gravitating to blue, which is my favorite color. I have SO MUCH BLUE in my box of fabrics, and I have ideas for more dresses and for a few pair of pallazzo pants which are easy to wear and easier to sew up.  I have a pair that I made in an exquisite rayon fabric back in 1990 that look pretty much as they did the day I sewed them.

Quality fabric is NEVER a mistake, buy the best fabric you can afford and you’ll have a piece you can wear for years!  If cancer’s given me anything so far, it’s time to stop and contemplate things I’d like to do, and realize that if I don’t do them now, I may not get another chance to.

A very dear friend, Jolanta, who some of you may know as the “bead and jewelry woman” from Stitches Midwest, sent me a care package yesterday with beautiful wafers, some chocolate AND a gorgeous Lapis Lazuli necklace.  Blue, and calm, and lovely.  Perfect for chemo therapy.

Fear Returns
The fear of cancer is always here, but the fear of BONE PAIN haunts me like my insane fear of flying, stinging insects.  I just received a note from MyChart (HealthEast’s portal) that I’ll be getting another lumbar puncture on Tuesday morning. This is a surprise, and I’m sure we’ll be spending a good deal of the day on Monday explaining that I WILL NOT HAVE THE PROCEDURE if they don’t include some anesthetic.

The place where I’ve been scheduled to get it is exactly where Gerry went for his first, with NO anesthetic, and it was absolutely horrible.  The two procedures I had along these lines this past week were both under anesthetic, and even then THEY hurt like hell for a few days after.

I keep running into folks who say, “Oh, I didn’t even FEEL it!” and I wonder at their strength. I know I’m a baby about a lot of things, this is one of them.

Another Class
On a MUCH brighter note, I signed up for another class at the MN Textile Center.

We are SO fortunate here in Minneapolis/St. Paul to have a wealth of museums, fibre and fabric resources and an AMAZING textile center.  The class I took in rug hooking in the Spring was SO exciting for me, so enjoyable.  It’s funny, I felt myself becoming weaker, more tired, with so much pain as the class went on, but I LOVED the class so much.

Now I’ll be taking a class called, “Wearable Art” and I’m really looking forward to utilizing some of the lovely fabrics I’ve been collecting over the past 30 years. Andy will be accompanying me to class as I’m not allowed to drive (too many drugs in my system.)

I’m looking forward to being in the class with Andy, who is beginning to find a love of stitching and fibery things.  Perhaps that’s something else that cancer will give me, a chance to connect with my kid on a whole new level!

I’ve never been shy about explaining how Gerry’s cancer, as scary and terrible as it was/is, was in many ways a gift to our family.  We don’t hesitate to tell each other we love each other, we know that time is never on our side.

So this morning I contemplate a nice amount of hand-sewing to finish my dress, and I ponder how lucky I am in the midsts of such a scary shit-storm of malignancy.  Please don’t think I’m a Pollyanna, I’m having a rough time dealing with many aspects of this journey I’m on, but I KNOW how ungrateful I’d be to NOT recognize how fortunate I am, too!

Fundraiser
We still haven’t heard whether I’m approved for SSDI, but I’m crossing my fingers.  Until then, life is a bit scary because so much of my projected income this year was going to be from classes I was going to teach at various fiber shows.  Add to that the medical expenses (it feels as though every week I’m dropping another $150 or $200 for copays and not-entirely-covered procedures.

If I DO quality for SSDI, the kicker is that it will be at a pretty low rate since I’ve been self employed while caregiving for Gerry for the past 12 years.  In our Social Security System, women who care for family members NEVER get a break, and it stinks.

Compared to what this adventure MIGHT be without insurance, we are lucky.  But it’s terrifying to see the bank balance go in one direction when I’ve been so used to seeing it rise and fall (like everyone else does, I’m sure!)

When I mentioned that I wanted to do a knit along, I hadn’t really thought it through – especially not as a fundraiser!  But the amazing folks at Mason Dixon Knitting (Hi Kay!! Hi Ann!) picked up on this and put it out there as a quick and easy fundraiser!

That was absolutely brilliant, and so many folks have responded by purchasing the Split Cable Wimple Pattern (currently $4.00 until I start my Chemo)  Thank you to EVERYONE, I can only say how humbled and grateful I am to each of you, and to the exceptionally kind folks who have also donated to my Paypal Fundraiser.  I feel crass even talking about it, but YOU are helping me pay my co-pays.  YOU are helping us put gas in the car for doctor visits.  THANK YOU.

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.

Split Cable Wimple Knit Along – Cables

ModeKnit Yarn Cables

A cable is, essentially, a group of stitches that is divided into two smaller group.  Either the first group crosses in front of the 2nd group to create a Cable Left (aka Cable Front) or the first group crosses behind the 2nd group to create a Cable Right (aka Cable Back)

CABLE 4 LEFT
The first technique symbol on the key to the left is the Cable 4 left.  This is a cable made up of FOUR stitches.

Our cable is worked thus:

  • Slip the first 2 sts
    (either slip them onto a cable needle, or onto the right hand needle if you’re doing the cable-without-a-cable-needle technique),
  • Knit the next 2 sts,
  • Return to the slipped sts and cross them IN FRONT of the sts you just knit
  • Knit the two front crossed sts.

Cabling Without A Cable Needle Video

I know this sounds complicated, so here’s a brief video I made a few years ago explaining my favorite method for Cabling with a Cable Needle.  If you love to use a cable needle, please do so!  I don’t want to change how anyone enjoys their knitting, I just want to add some extra bits that some of you may find helpful!

Split Cable Wimple Knit Along – Lace Elements

I’ll be posting about my OWN knitting of my Split Cable Wimple, and here’s where you’ll come for tips and tricks and to ask questions in the comments.  If I can’t answer your question(s) right away, I’m positive someone will jump in and give it a good try!

First, and foremost, let’s discuss the symbols that are used in the pattern.  You don’t HAVE to use the chart, the pattern is written out for you, but when discussing the different techniques I’ll be referring to the stitch symbol to as well as the stitch technique name.

Sl st — Slip Stitch
In order to highlight a particular stitch, to draw attention to a vertical line in a pattern, often a stitch is “slipped,” or passed from the Left needle to the Right needle without forming a stitch.  This forces the Slipped Stitch to elongate itself and become twice as tall as the stitches around it, which can create a lovely stitch pattern.

We’ll work our Slip Stitches thus:

  • Work to the point where the Slip Stitch will happen.
  • Insert the needle into the next stitch purl-wise (as if you were going to purl the stitch) keeping the yarn to the wrong side of the work.
  • Slip the stitch from the Left Needle to the Right Needle.

The slipped stitch will echo the look of a Vertical Double Decrease (see below) and is often used in lace knitting to emphasize a stitch pattern without actually decreasing any stitches.

YO — Yarn Over
Sometimes called a “Yarn Forward” in the UK and Canada, a Yarn Over is the US name for a technique whereby we create an eyelet, or “hole” in the work.

In lace knitting, the eyelet is the most recognizable element, it’s what makes lace look like lace!

To form a Yarn Over, you’ll wrap the yarn around your working needle (usually the Right needle) in the same direction as you would wrap the yarn while making a knit stitch.

We’ll work our Yarn Overs thus:

  • Work to the point where the YO happens
  • DO NOT INSERT THE NEEDLE INTO THE NEXT STITCH!
  • While the needle is ‘resting’ between stitches wrap the yarn around the working needle in the same direction as if you were forming a knit stitch.
  • You’ve just formed a Yarn Over.

K2tog-R — Knit 2 tog with a Right Slant
One of the most basic decreases used in knitting will be what we call a K2tog-R.  In most Western patterns this is called, “K2tog”, but I like to add the K2tog-R at the end of the technique name to reinforce that this decrease will slant TO THE RIGHT.

A decrease will either slant to the left, to the right, or will be centered vertically.  This decrease slants to the right.

A simple way to remember what direction a decrease will slant is to note what direction the needle tips are pointing AS THEY ENTER THE STITCHES TO BE DECREASED!

We’ll work our K2tog-R thus:

  • Work to the point where the decrease will happen
  • Insert the tip of the working (Right) needle into the 2nd st from the tip of the Left needle, then continuing on, insert the tip of the working needle into the 1st stitch at the tip of the Left Needle.
  • The Left and Right needles will BOTH be inserted into the same two stitches at the tip of the Left needle, the needle tips will be pointing in the same direction.
  • Wrap the yarn around the tip of the working (Right) needle, then draw this loop through BOTH stitches (see video below) thus working these stitches together.
  • Kick the completed stitches off of the Left needle.

As shown in the video below, as the needle enters the stitches to form a RIGHT Decrease, the tip of the working needle enters the sts to be decreased pointing to the RIGHT.

I’m not going to cover the K2tog-L decrease here, which is usually called SSK or K2tog-TBL in most Western patterns.  You can watch the video to see how to form it, and WHY I call it K2tog-L, but as it’s not used in this lace motif I’ll just leave it here for now.

VDD — Vertical Double Decrease
In our Wimple we’ll be using the K2tog-R technique and a different decrease technique called a VDD to create a Centered, Vertical Decrease which leans neither left nor right.

A Vertical, or Centered, decrease will always involve an odd number of stitches; stitches to be decreased on either side of a centered stitch which will remain at the center of the decrease.

We’ll work our VDD thus:

  • Work to the point where the decrease will happen
  • Insert the tip of the working (Right) needle into the 2nd st from the tip of the Left needle, then continuing on, insert the tip of the working needle into the 1st stitch at the tip of the Left Needle.
  • Slip these stitches off together. DO NOT KNIT THEM, simply slip them off of the Left Needle onto the Right (working) needle.
    The stitches MUST be slipped together, do not slip them one by one.
  • Knit the next stitch on the Left needle
  • Pass the 2 stitches you’ve just slipped onto the Right needle OVER the single knit stitch you’ve just worked.
  • You can pass the stitches one at a time, or together, whichever is easiest.

You will have just formed a decrease which is vertically centered.  You should be able to see the center V clearly.  You have just decreased 2 stitches, turning a group of 3 sts into a single stitch.

In our motif, the VDD is ‘bookended’ at either side with a YO. These two Yarn Overs will take the place of the stitches that you decrease in the VDD, keeping the number of stitches in the motif constant.

More info tomorrow when we cover CABLES, another important element in our Split Cable Wimple.

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!