Bad Trip

FOUR bags of chemo, hanging on a pole.

I think everyone’s had at least ONE bad experience with chemistry.  Generally the chemical is alcohol, and the experience is drinking too much, getting too sick, and then feeling way too remorseful.

My mother, who I think of as perhaps the most Perfect Methodist To Ever Walk The Earth (except for the smoking thing…) had one foray into the land of the grape.  Several years into their marriage, at a party, she drank some wine.  Knowing my mom, it was probably all of two glasses, and she got sick as a puppy.

Dad took her outside and walked up and down the snowy streets of Toledo, hoping the fresh air would revive her.  It ended, as most of these episodes end for folks, with one person retching into the gutter and the other person holding their hair, the definition of love and friendship for many relationships.

That was the last deop of alcohol my mother ever touched.
My brother and I were mom’s unwilling audience to this tale every time we left the house in our late teens and twenties, and we would recite it along with her.

My first experience wasn’t far off my moms, and involved a frat party, a walk home by a guy I had a sort-of-crush on, a quick hug-and-kiss on my doorstep, and a well timed slide into the suite bathroom (no gutter for Mabel’s daughter) where I expelled the several glasses of “punch” I’d imbibed earlier that evening.  I’d like to say THAT was the last drink I ever had, but I wasn’t as wise as my mother.

New chemo slogan for Cream of Wheat: “As easy going in as it is going out!”

Today felt like I’d visited a different kind of frat party, one where the drinks and drugs weren’t imbibed, but were dripped into my veins, drip, drip, drip, and with each drop I felt less like a human and more like some kind of biology experiment / human sponge.  How much can I absorb?  What exactly AM I ABSORBING?

Every time they’d change the hanging bag of clear fluid, the nurses (who are the real heros of this tale) would describe to me WHAT they were giving me, HOW it might affect me, and WHAT I’d be receiving to offset the effects of the chemo drugs.

Better living through chemistry!

So although I’ve had chemo before, a few weeks ago, I can honestly say that R-EPOCH was a walk in the park compared to my foray Thursday into CODOX=M/IVAC.  And I didn’t even have the hardest part of it Thursday!

There’s no need to go into gory details, but the hardest parts of the day was the overwhelming nausea (yes, I was ill several times — I feel as though I’ve REALLY had chemo now; Bald Woman Throwing Up? check!)

Even more difficult was the IVAC portion, which involved me moving onto a skinny bed and being wheeled down to a sterile room (watching the ceiling fly by while nauseus is – nauseating…) where I was moved on to a SKINNIER table—I swear it was 9″ (it wasn’t 9″) and a needle was inserted into my spine so meds could be delivered, a lumbar puncture.  A spinal tap.

My happy place involves an early autumn walk on a sunny morning, the light, the shadow, it takes me away to a more beautiful space.

And this time it hurt, when it hasn’t before.  Hurt like hell.  But there is NO SQUIRMING ALLOWED because I have a goddamn needle in my spine and I’m lying on a 9″ (it wasn’t really 9″) plank.

You squirm, you could become a worm. 

I just made that up, but it could
be the tagline for a spinal tap. NO MOVING.

We have children for many reasons.  For me, one of the reasons has become clear through this whole episode in my life.  At the best of moments, the love I get from my kids is the closest thing as the LOVE I would feel from my mother when I was sick.

All I wanted when I got back to my room after the spinal procedure was to see Andy, but today was a terribly, rainy, pain-filled day for Gerry and Andy had other parental duties to discharge.

So back in my room, more hanging bags of clear liquid, more pokes and prods, more nausea (but no more vomiting, which was an incredible mercy – the anti nausea drugs they have now are amazing!) and just more exhaustion.

I never had any idea how exhausting just laying in a bed could be.

I couldn’t bring my self to actually eat anything.  All I wanted was a milkshake, and when Gerry and Andy arrived I sent Andy out immediately — into a terrible rainstorm — to get me one. Bad mommy.  And Andy brought it back to me. Good  Andy!

And that milkshake was the best thing I’d ever drunk.

One of the side effects of a chemical I’m being given is that it will effect my hand writing and my gait.  I was WAY too sick to walk around today, but at least twice a day I am supposed to write a sentence that proves that my handwriting hasn’t changed and that part of my brain isn’t being affected negatively.

Handwriting looking about the same…

I SHOULD have started by writing really badly, so I could say my handwriting has IMPROVED, but I didn’t think of that.

The sentence I chose? “There’s ALWAYS money in the banana stand.” No one, not ONE person here at the hospital, got it. I feel so old, was Arrested Development REALLY 25 years ago? No, it wasn’t.  But it feels like it…

So, finally, at midnight (Hello Friday – WHAT JOYS will you bring me today?)  I’ve had enough time away from chemical drips that I am able to sit up without nausea, and I’m able to write back to friends and family and catch up on the blog.

I have a taped-on heart monitor to make sure my heart rate doesn’t speed up too far, which greatly inhibits my typing skills, but it’s a sacrifice I’m happy to make.

My goals are to stay put. To get through this thing in one place, mentally and physically. TO just BE HERE, to be present, and to GET THROUGH IT.  I would give anything to run away, but that’s not possible, you cannot outrun cancer.

Part of staying put will be trying to keep my good numbers up; good platelet counts, good hemoglobin, just GOOD numbers.  And to keep the bad numbers down; heart rate below 100.

If I can succeed in this, I will be deemed ‘healthy enough’ to continue with the CODOX, and for me that means STAYING in one place, staying with the “hard” chemo.  For once in my life reaching for the toughest rung on the monkey bars

Low arm strength vs high body weight =
notorious NON reacher of far off monkey bars.

If I don’t succeed in this I’ll need a transfusion.  That DOESN’T mean that CODOX is out, but if I slide too much farther backwards then it might be.

I’ll be going home on Sunday, huzzah, and THAT means I’ll be able to have salmon and spinach again, my own home made yogurt and other foods which I feel have been able to keep my numbers on the good side of the equation.

The food here at the hospital is – well – it’s hospital food.  Not great, and kind of flavorless unless it’s too salty.  Of course, that could be my own sense of taste, which is being affected by the return of the chemo mouth-sores.

Tomorrow I’ll ask Andy to bring me a bunch of my ice pops, they’re one of the few things that I can eat when my mouth is so much in pain.

I wonder if we keep them in the freezer here they could remain unmolested..?

Aaaaaaaaaaah!

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.

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.

Diagnosis Update, And A Decision (?)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Am I just being difficult to ask these questions?

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

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

It’s scary, though.

Strategizing

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

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

Gerry Gazes at Scotland

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

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

And THAT was our default mode for years.

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

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

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

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

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

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

Meta Max

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

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

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

Andy Draws On Her Love of Nature

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

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

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

Beautiful, Fierce Becca!

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

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

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

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

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

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

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

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

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

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

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

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

It's ALIVE!

Time To Care For Me, Now!

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

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

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

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

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

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

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

Income Must Exceed Outgo

Sookie St James
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The truth is, dyeing yarn is my passion, designing patterns is my joy, but selling yarn is my business and our income.  With Gerry out of commission from his myeloma for 12 years, my teaching, design work, writing, and yarn sales are our complete income outside of disability, which is small.

Putting the kids through college has been a tough but necessary thing, and now that Andy is out that’s a huge relief. Down-sizing last year so we could consolidate everything could NOT have come at a better time, especially in hindsight.  Somehow we had the presence of mind to set ourselves up for THIS cancer adventure.

Betty Confetti
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The Other Half Of MKY
Aside from me, though, there’s Kathleen to consider.  At a point when Kathleen was between jobs, I mentioned that I’d always wanted to start a business dyeing yarns that were as easy to care for as they were beautiful.  I feel strongly that most folks make knitted items as gifts (for themselves, for others) and giving a gift with instructions can be a hard thing in our modern busy age.  “Here’s a lovely baby cardigan I made for you, now here’s how you have to hand-wash it so you can enjoy it more than once!”

Freckled Iris
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Kathleen jumped in and said she was “in!”  We each put up $1,000 and the use of Kathleen’s personal vehicle and garage for yarn storage and my own gorgeous 3 car garage as our dye studio.  We’ve made it work, and slowly we’ve built our assets and our customer base and have made a very good team.

Working out the kinks of our friendship along with the kinks of a young business partnership has been refreshing and 99% wonderful, like a lovely type of marriage.  I don’t want to leave Kathleen in the lurch by my absence, and selfishly I don’t WANT to be absent from the entire business.

Crab Nebula
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There is something SO special about women working together toward a financial, business goal, and Kathleen’s been remarkable every step of the way.

Kathleen is a HUGE part of MKY’s success; her knowledge and ability to help customers with virtually EVERY aspect of the yarn buying process is astounding.  She single handedly arranges out travel schedule and builds our kits, creates mini skein sets and handles the taxes and insurance angles of the business.  If we have a well-run business, it is definitely due to Kathleen. I dye the yarn and design the patterns, she does the rest!]

Obviously I won’t be able to attend any of the yarn shows this Fall, and leaving this mess on Kathleen’s head is one of the things I feel the worst about.

Night Music
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So Let’s Keep Growing!
ModeKnit Yarn has been doing well these past 5 years, growing steadily and providing a better-than-part-time income for Kathleen and myself, paying bills, hiring a few outside folks and reveling in the community of knitters and fiber artists that we inhabit.

It is by no means a HUGE income, but we make it work, and it’s also been a blast!  I will miss the travel and camaraderie more than anything, and I’m so impressed by Kathleen’s ability to jump in and line up a bright array of friends and former employees to dive into the biz and be our new “booth assistants”.  I’m actually a bit jealous of all of them.

Because I’ve been so low energy for so long in the booth, realistically my presence isn’t such a bonus these days.  In fact, when I was relying on pain relievers to get through a shift I’m afraid I was absolutely terrifying in my stream-of-consciousness riffs that would alternately delight and dismay our customer base.

Emily Gimore
Dyelot 072817

A New “Mode” Of Selling
We’re going to try to revamp the business for the foreseeable future so that it’s less about ‘dyeing on demand’ and instead will be ‘dyeing what we feel like!’ (or, rather ‘deying what we’re able!’) and then offering those yarns for sale in small batches on our website, more of an etsy type system.

I’m just not certain of my strength of body or mind to be able to match colors from our palette and satisfy customers.

Disappointing more folks is the LAST thing I want to do this year.  I feel responsible to try to keep things as profitable as possible while I’m out of commission with radiation and chemo.

“It is MODEKnit Yarn, Darling!”

The plan at this point is for my dye assistant, Layla, to pick up some of the slack I am dropping during my recovery, and perhaps to do some specialty orders.  We won’t be up to our old dye schedule for quite a while, but perhaps we can devise a new normal to allow us to continue to develop color ways, products and projects, while at the same time allowing Layla and Kathleen to have more creative input into the biz.

That part is HARD for me.  I wouldn’t call myself a ‘control freak’, but my NAME is on the company (well, 4 letters of my name…) and I feel an ownership of the creative side that I might not feel if we had just named our company, “Minnesota Nice Yarns” or something like that.

Stay Tuned
Instead we chose as our tagline, “Make Something NICE!” because – Minnesota!

So far we’ve photographed about 1/4 of our yarns, I’m in the process of creating individual inventory items for everything we’ll be selling. Hopefully this will have the happy outcome of allowing us to align our WooCommerce and our Square inventories (I have a plug-in!) 

Now the question is, can I create a bit of clarity of mind to actually CREATE this thing.  Radiation brain, friends, the struggle is REAL!

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.

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.

Darkness, meet Dawn

2015-04-16 12.01.56

On Set In Loveland, CO March 2015

Hey Folks!

I’m writing the post that I’d been hesitating to write for over a year. [deep breath]

It’s been a pretty hard 14-month period, but also an amazingly great period. A dull twilight punctuated with glimmers of pure white starlight, and dark moments, too.

The Good

Andy gets a tattoo!

Andy gets a tattoo!

The family’s healthy—for the most part— we have a home, heat, food, running water and as much love as any family could need! I have exceptional friends, excellent work, beautiful yarns to dye and sell and one of the best business partners I could ask for.

The kids are beautiful and thriving, Andy’s doing well in her 2nd year at Earlham, Max is applying to various colleges (c’mon Hampshire!)

The Bad

Max Gerry Gustavus Tour

Max, Gerry & Jasper on a College Tour

Gerry’s health, which has fluctuated between very good and scary bad since his initial diagnosis with Multiple Myeloma in 2007, has been on a bit of a downswing. We’ve experienced worse, and as we experience the loss of friends with this disease on a regular basis we realize how fortunate we are, but it’s a constant mental and emotional burden.  But our dealing-with-ongoing-chronic/terminal-illness muscles have been honed, and we generally have a pretty good attitude about it.

I can honestly STILL say that the lessons that cancer has taught all of us—mostly about ourselves and our love—are worth learning.

The Embarrassingly Bad

In November 2014 I tried to kill myself, and I’m still dealing with the fallout.

I wasn’t depressed (well, no more than usual, like my father and many other members of my family, I suffer from depression and treat it with prozac, eating well and exercise)

I WAS, however, on a drug that caused me to behave in a way that was absolutely foreign to me.

Lyrica Blues

In August 2014 I was diagnosed with Shingles, and it was a bad case. The pain was overwhelming, causing me to be in and out of the ER several times. As part of my recovery, I was offered Gabapentine.  Having used it before for Fibromyalgia, I knew it did little more for me than make me dopey.

So then I was offered Lyrica, and the difference it made in my pain was outstanding. Not just the shingles, but my fibro pain as well. It was as if Annie from 5 years ago was back and I felt like a million bucks. Until I didn’t.

One evening, after a VERY silly and unimportant argument with Gerry (seriously, we argue as every couple does, this was NOT a big one, just silly…) I found myself sitting in the living room with a fully bottle Gerry’s pain medication that I’d picked up from the drug store that day, and without really knowing what I was doing, I poured a big handfull out and swallowed it.

It was surreal. It was almost an out-of-body experience. I still can’t quite believe that I did it. It was almost as if I were watching a movie of someone doing what I was doing.

Gerry was upstairs, the kids were out of the house, and something in my brain just said, “Hey, take a bunch of those pills why don’t you…?” So I did.

I told Gerry immediately. He didn’t understand at first, but when he got it, we were off to the hospital.

And here’s where it got interesting.

This guy would like a walk, too!

Help with dyeing

I expected to be questioned pretty thoroughly, perhaps admitted to a psych ward or something (the only thing I have to go on with this are Lifetime movies.)

But when I explained to the nurse admitting me that I was on Lyrica, and I had NO idea what happened, I just suddenly had 30 strong painkillers traveling down my throat.

And her response? “Oh, Lyrica. Yeah. We see that a lot.”

I was sent to an exam room where a doctor and nurse came in to give me charcoal to drink (I chugged two bottles in record time, good to see my college education paying off) and, when I explained to them what had happened, they replied in unison, “Oh, Lyrica, yeah. We see that a lot.”

They didn’t even have a social worker come to talk to me, they chatted, and on my promise to see my primary care doc the next day, I was released.

The next morning I did see my doc, we worked on a schedule to taper myself off of Lyrica, and I also saw a therapist for a few months.

Since Then

My bike, my man, my dog and a new haircut!

Pure Happiness; Gerry, Jasper & My Bike

I had never had such a strong urge to do myself harm before that night, and I haven’t had an urge like that since. Amen.

The fact that I DID have that urge is frightening; obviously there was something inside of me that felt entirely overwhelmed and full of despair. But it was the Lyrica that crystallized those feelings, that made them solid and compelled me to act on them.

I haven’t discussed this with the world in general (until now – hi world!)  My good friends, family and some of my customers have known, though. I’ve had several folks come forward to tell me they’ve had the SAME experience with Lyrica.

I’m not saying that Lyrica should be banned, but I do think that it can be a very dangerous drug, I’m proof of that. The entire time I’ve had Fibromyalgia I’ve worked hard to deal with that ongoing pain with diet changes and lots of exercise.  My instincts in this were more right than I could know, I’ll continue in this vein as long as I can.

Why Now?

So why am I telling the world this story now? I’m not entirely sure.

I feel as though there’s been a dark cloud on the horizon since this episode in Nov 2014. As much as I tried to fight through it, I would wake in the early morning hours gripped with terror (unreasonable fears; financial ruin, Gerry’s demise, something happening to the kids, etc.) and it’s been a long road coming back from the fear surrounding this episode.

Sunset, Ft. Myers Beach

Ft. Myers Beach Escape, Feb 2015

It’s just been in the past few weeks that I feel I’m finally passing out of this dark phase. I knew it would happen, I knew the light would shine again and I’d feel more like my best self. But it’s been a lengthy process of dealing with guilt for the fear I caused Gerry, anger at myself, and fear that I’d broken something that couldn’t be fixed.

But light is filtering through again. Many folks have written to ask why I’m not blogging as much, how come I’m not on Facebook as much as I used to be; this is the answer.

Last year I talked about my experience in front of a Multiple Myeloma group leaders at a conference . Lyrica is a drug that is commonly used within the MM community as shingles is often seen among these patients.

After I’d heard Lyrica praised over and over at the conference (and it IS a remarkable pain med!)  I wanted folks to hear from someone who had personally experienced the, “may cause suicidal thoughts or actions” warning first hand.

ModeKnit Yarn Cables

Thank Heaven for Knitting

As many of you know, I’m no shrinking violet and can speak in front of a room, but this was a terrifying experience; admitting that I’d done something so stupid and potentially harmful to my family. But I feel it was an important thing to do, and heard later from someone who’d had a similar experience in the group but had never talked about it.

So now you know.

I’d like to say, “Now let’s just forget this ever happened, and go back to life as it used to be!” and I’m trying to do that as much as I can. But I’ve stood on the cliff, I kicked a stone off and in an almost trance-like state, I followed it over. But I caught a branch on the way down and didn’t go splat.

ModeKnit Yarn_A Lovely Thing

A Lovely Thing, “My Year In A Colorway”

The reality of this experience had darkened everything I did for months.

I’ve been adding touches of black to many of our ModeKnit colors (which works well in many cases) but finally I feel as though I’m able to see many colors as they really are, pure and bright.

As much as I understand that there will be periods of light and dark in the future, I’m feeling more hopeful about moving forward than I have in – well – 14 months. Thanks for sticking with me.

MKY_all_the_colors

The Holiday Cycle

andy_alison_inside_lav

So wonderful to have the girl home, even if only for a few days!

I generally feel some kind of let-down on the day after a big day, and Thanksgiving is no different.

I think it’s all the cooking, cleaning, organizing and trying to get the troops sitting at the table at the same time that is so wearying. I also think I’m afflicted with an early case of empty next syndrome. I realize that this time next year both kids will be away at college – and after that, who knows?

Coming from an incredibly disfunctional (and at times absolutely toxic) family environment, I’ve worked hard to keep my own family holidays as low key and – well – small as possible.

It always seemed to be at the larger family events that someone would take joy in pushing someone else’s buttons; I’m afraid I got a lifetime’s worth of that at a young age.

Small and quiet works well for us.

And then I worry that our holiday will be TOO small next year.

Someone's been helping me with the skeining...

Someone’s been helping me with the skeining…

I love my family, and they love me, but somehow during the holidays there generally comes a blue period when I foolishly begin to doubt my abilities as a parent.

It makes me wonder if my own mom (and her mom, etc.) felt the same at the holidays. I miss my mom (and cousin Jan) all through the year, holidays are one of the hardest times, though.

And, as it’s been a bit colder (after a LOVELY early November) I haven’t had a chance to get out on my bike for the past week.  Astounding how that rocks my world. I know a good amount of the ‘blues’ is due to inactivity. So it’s time to do something about it.

This guy would like a walk, too!

This guy would like a walk, too!

We’re incredibly lucky here in St. Paul, we have a wonderful network of Rec Centers, and for the low cost of $30/year we can visit ANY of them whenever we want for gym time, pool time, or to take a yoga or zumba class (those last have an additional fee, but it’s pretty low!)

So I’m setting out to renew my membership again, so I can try to get some regular exercise to take the place of my daily bike rides.

I’m lucky that right up the street, about a mile away, is a great rec center with a pool and a sauna. Kathleen and I have discussed finding a Zumba class, so maybe we’ll be doing that, too!

My mom used to say, “When you feel blue, take a walk or take a nap.” and I think right now I need the equivalent of a nice long walk every day. Maybe a nice, long walk down to the Jimmy Lee Rec Center?

red yarn settingIn working news, I have SO much yarn to dye in the coming months.

The good part is that I’ve been scheduling the dye sessions, so I’m not working haphazardly (as I might have last year with smaller orders).

I’m trying to work in a very planned way to dye all the yarn that is required for a some pretty big orders, (and the nonstop fiber shows in the late Spring & early Summer of 2016 we have coming up!)