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!

What Doesn’t Kill You…

…makes you STRONGER?

Day 1 of CODEX=M/IVAC chemo, and my body is handling it pretty well.

Todays Chemo Specials!

Of course, the chemo drugs haven’t really been IN my body long enough to cause the brutal side effects they keep telling me I’ll be seeing.  AND the nurses are doing an amazing job of both explaining the prophylactic measures they’re taking to prevent bladder problems, nausea, headaches, dizziness, unexpected bleeding—if it is an undesirable side effect, the chances are it’s part of my chemo journey!

I can be relaxed about this so far because it’s only day one.  We’ll see how happy I am on day 7, when the side effects begin to come into their own.  For now, I’ll enjoy what I can enjoy, not that getting liters and liters of fluids pumped into me all day is terribly ENJOYABLE, but it’s not horrible.

Amusingly, one of the drugs can have neurological side effects that show up when the patient tries to write a sentence, so the nurses had me pick a sentence that I can write over and over through the day to make sure that my brain is working as we all want it to work.

There’s ALWAYS money in the Banana Stand!!

The sentence I chose?  “There’s always money in the banana stand!”  Neither of my nurses had heard of it.  There’s nothing quite like explaining an obscure cable TV joke, entirely out of context.  I probably should have chosen, “NO TOUCHING!” as my sentence.

Today Gerry was down at Mayo meeting with his new cardiologist.  I’m so excited about this, because we’ve put his heart health on the back burner since my own diagnosis, and it’s high time that he got a little attention paid to his health issues.  One of my dear knitter friends volunteered her husband to drive Gerry down, and he seemed happy to do it, so we are VERY excited and VERY grateful to Wilson for ‘volunteering’ to be Gerry’s driver, that was a gift!

Andy was taking care of getting me settled in my 5-day hospital room, so they weren’t available for the drive down.  I ended up needing some stuff from home that I forgot, so it was very good that Andy was nearby.

It feels a little surreal to be back on the same ward that I was in when I was diagnosed, now I have no hair, but still the nurses seem to remember me.  It’s a really lovely group of folks here, I feel like I’m visiting family a little bit!

NOW It’s Real

I have kept wondering, over the past 7 weeks or so, WHEN will this cancer thing seem real?  I mean, not that I’m NOT sick or anything, but sometimes when something is so life changing, it just doesn’t seem to sink in, doesn’t seem 100% real.

My cane matches my pedicure!

I figured I’d keep wandering around in a semi-fog, achieving moments of clarity as pieces of the lymphoma puzzle came together, until at last there’d be some kind of crystal clear reckoning when things fitted together and made perfect sense.

THAT hasn’t happened.  Some things are just as foggy as they have been, some things seem clearer, but suddenly the whole mess feels REAL.

The pain so far’s been real; the pain my body shoots at me through the tumors (large and small) and the other internal indignities that present themselves as recurring pricks of pain or deep seated aches.

I’m learning to deal with the pain, to figure out how to avoid it, or to meet it head on, or perhaps to sidle along beside it, dealing with it quietly, so it doesn’t even know I’m there.  Shhhhhh.

There’s also pain that comes from outside my body, the needle pokes, the sticks, the punctures. AND THEN there are the shakes, hunger pains & mental anguish which are hallmarks of  Dex.

Every human body deals with Dexamethasone (a powerful steroid) in it’s own way, but it’s been one of my hardest battles; Dex entirely changes my personality, turning me into a raging, raving, hungry, incomprehensible ball of pure emotion.  At the start of this trip, I was on a double dose of Dex and I thought I’d end up in federal prison instead of a hospital.

Heaven help my family, they’ve been amazing
in dealing with me and the Dex, I wish I were as gracious.

The fear has certainly been real.  Like anyone facing a serious cancer (is there a cancer that is NOT serious? What a silly phrase that was…) I have had my middle-of-the-night sitting-up-straight-in-bed PURE FEAR sessions.

Death is a fear every human has to face, no one gets out of this life alive.
But when you feel your time is shorter than you had anticipated, it brings up a great deal of unfinished business. There can be lots of baggage, and cancer has a way of leaving those bags in the foyer of your brain where you can trip over them at 3am.

But what makes the cancer seem suddenly VERY REAL is that I have a date that my chemo is supposed to begin at the Mayo, and it’s this coming Tuesday.  We got the call today from Dr. T, I’ll drive down with Andy on Tues morning (not too early, thank heaven!) and start the pre-chemo labs.

Then I’ll be admitted to Methodist hospital where I’ll receive the cocktail of drugs that will be VERY rough.  The way Dr. T described it, the chemo will really kick my butt, and I’ll be in such bad shape that they won’t be able to release me from the hospital until they’re certain that I WILL RECOVER from the chemo infusion.

Thats ME! Side view [long and thin] and front view [gingerbread cookie]

She drew me a picture.  Two in fact.  And I did NOT promise not to show them here.

I actually found them charming and helpful, and I don’t know that any doctor’s ever drawn me a picture before. 

The first image is me, a side view, showing my spine and explaining why it’s necessary for me to continue to receive chemo directly into my spine.  Hint: It’s where the CANCER IS.

The second image is also me, looking rather like a gingerbread woman, showing how the Methotrexate will kill the cancer, but will also try to kill ANYTHING ELSE in it’s path.

Because my tumors seem to REALLY like my spine and brain, Big-M (which is what I’m calling Methotrexate) is the best medicine to treat them. But it’s a dangerous med, and needs to be controlled.

This image demonstrates how Dr. T. will fight off the bad side effects of Big-M and until that is under control, I’ll be monitored at Methodist.

An extra bonus is that during my time at Methodist I’ll probably be overseen, at least a little bit, by Gerry’s hematologist, Dr. H, who has become a good family friend.  I almost feel as though I’ll be with family, and that feels amazing.

Andy has been stellar through this adventure. Thank you, Andy!

So I’m scared.  I remember how hard this was for Gerry when he had the high dose chemo, and I’m wondering if it will be as bad for me as it was for him.

But I’m also cool with being scared, it’s part of this whole trip, and I’m feeling strong enough to get through this.  Hopefully in one piece.

The chemo I had two weeks ago here at St. John’s in Maplewood was called  R-EPOCH (not R-CHOP, as I previously mistakenly said) 

It was a 5-day infusion that I carried around with me in a bag type mechanism that pumped the chemo into my chest for four full days, Tues through Friday.  I didn’t really get very ill, the anti nausea meds were great, and it wasn’t until the following week that I suffered the exhaustion and mouth sores that came with R-EPOCH.

This chemo that I’ll be getting at Mayo is called CODOX=M/IVAC, and although it has similarities to R-EPOCH, it’s an entirely different beast.  I wish I knew what that alphabet soup of a name actually meant, but what I DO know is the M=”Big M”=Methotrexate and the IVAC means I get more needles inserted into my spine.  Huzzah.

3am; Nitro, the softest kitty in the world, and me.

But, it’s an important step in getting this cancer OUT of my spine, so I’ll not complain!

Okay, maybe I will complain just a bit.  Andy can give you all the gory details of my complaining when this adventure is finished.

Tumors?
Folks have been asking, “If you have Lymphoma, why do you have all these tumors in your spine and back and neck? Isn’t Lymphoma a blood cancer?”

Yes, that’s true, I have a blood cancer.  I’ve been told by my docs that lymphoma is a cancer that can produce some amazing tumors, and I’m one of the lucky folks who seems to have a very fertile ground within my nervous system to grow these tumors.  Why that is, I don’t know.  But getting rid of the tumors is a large part of my treatment.

I’m not an oncologist, and I’m not reading as much about this cancer as I probably should.  I know many folks facing an illness like this prepare themselves with education, that was Gerry’s way of dealing with Multiple Myeloma.  But I am lazier than that, and I know that my comprehension of the disease will probably have no material impact on what my doctors choose to do.  I’d rather spend that time reading a novel, knitting or watching some cooking show. Or baking.

Any chance I have to show off my cookie, I will SHOW OFF MY COOKIE!

Location Details
So this weekend I’ll get myself square away, packed up, ready to head down to Mayo. Andy’s booked into Days Inn (next to Methodist) and then later in the week she’ll move to the Staybridge Suites (a better choice for us when I’m released from Methodist, but need to stay down in Rochester.) 

I honestly believe that if there had not been the AMAZING response to the GoFundMe to raise money for our accommodation in Rochester, this chemo would NOT be happening. 

Thank you to everyone who helped out along the way, I am VERY grateful to each of you!  You have made a huge difference in my recovery.

And now I will go nap. My exhaustion has taken over my days and my nights, I slip into sleep so easily I barely even know whether I’m awake at any given time.  I’m certain it’s because I’ve been keeping a pretty rough schedule the past few days. Who knows?

Maybe my days at Methodist on CODOX=M/IVAC will be just the rest cure I need..?

Or maybe I’ll just bake something at 3am.

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!

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