An Arc

I can’t believe I haven’t blogged in a month!

It’s been QUITE a month.  I thought that by now I’d be writing about my adorable tutoring students, and how every day I could see in their happy, fascinated faces that I’d made a REAL DIFFERENCE in their little reading lives.

Unfortunately, Health ran interference on my Life, and Health is a hog about always taking center stage.

TUTORING

I realized a few weeks into the Americorps tutoring job that I probably didn’t have the stamina, but I was still hopeful that I’d be able to increase my strength day by day.

Then I fell last Saturday.  I was in the basement, I washed my hands (thereby getting a bit of water on the concrete floor) then turned to walk away and fell HARD right on my face.  My nose was bloody, my tooth was chipped, and my chest felt as though someone with huge boots had kicked me, HARD.

Getting up was hard, so hard, but I did it.  I got upstairs and cleaned myself up as well as I could, waited for Andy to get home from running errands, and decided to try to ‘sleep it off’ because I just felt so wiped out after my crawl upstairs.

The next day I hurt just as bad, so we went off to the ER so I could make certain that I hadn’t damaged my spine or any of my cancer-affected bones, and we learned that I had definitely bruised – might have broken (although it’s hard to tell…) – a couple of ribs.  They offered me some pain relief, but I told them in all honesty that I was already taking pain meds for my back and Tylenol was probably the best thing for the swelling that was causing the pain.

Upon returning home, and taking time for some careful consideration, I finally had to admit to myself that I wouldn’t be able to do the duties of my job for the next few weeks, and I couldn’t guarantee that I’d be able to do the work even AFTER those weeks had passed.  So I had to make the very, very difficult decision to back out of the Ameritrade tutoring job, which breaks my heart a little.  So many broken things all over the place.

PAIN CENTER

Tuesday I had a first visit with a pain clinic, which went – oddly.  I’m still trying to work out exactly what happened, here’s how I wrote about it on FaceBook:

My first pain management appt didn’t go well. Apparently I somehow angered the CNP, I’m still trying to figure out how.

One minute she was staring me down (unblinking, very odd) then when I mentioned that it made me uncomfortable, she looked away and said, ‘Well, since I’m not allowed to LOOK at YOU..!’ willfully misunderstanding what I was saying.  The appointment ended with her telling me that it was “a privilege for me to be seen at the pain center,” and she left abruptly.

I had a meeting with another nurse and the clinic manager, they’re going to try to hook me up with a different person – a doctor – for a future appointment. In the mean time I’m reliant on my PCP for my pain meds.

Maybe it’s better to just keep it that way, I got an odd vibe from this pain management center. I don’t have a camera or anything, I can’t ‘rewatch’ the interaction – I’m still trying to figure out what I did, or didn’t do, that seemed to anger the CNP so much.

I walked away with such an odd feeling about the pain center, I’d decided by the time I got to my car not to pursue treatment there.

Yesterday I met with my therapist, who deals with cancer patients and is affiliated with my cancer center.  She was able to pull up the notes from the CNP in my chart, (what was written after our very brief appointment) and I was startled by them.

In the comments I am “She”

She notes that she feels forced to come the [sic] pain center and has no other choice according to her oncologist.* . She also notes that OxyContin is really an “8 hour medication not a 12 hr”*^, she also notes that she will not wean off of her opiods because she has tried and the pain was too excruciating,** she has receiving [sic] medication from her oncology provider at this time.  initial consultation did not go well.  The patient reports to the provider that she was offended because the provider was “staring intently” while listening,^ an apology was provided to the patient^^ and she asked for the clinic manager.  The visit has since ended abruptly.  No charge from the provider at this time as this is not a complete visit.

It continues ominously

Previous to the visit her oncology notes were reviewed – it appears that they have tried to reduce her use of opiods as her oncology diagnosis is in remission.**

Addendum – patients case will be brought to case review for evaluation, as the clinic manager has discussed with the patient, no prescriptions will be provided to her from the pain center.  No UDT was taken today.  Clinic manager aware and involved.
_

* This is not true, I was the person asking for the appointment, I asked my oncologist AND my Primary Care Physician for a referral to visit the pain clinic.  This is a lie.

*^Articles re: 12-hr/8-hr OxyContin problem, it’s a real thing, and I discussed with her that my husband had taken Oxy for over 12 years and this was something he had researched.
          LA Times, May 5, 2016
          Practical Pain Management, July 2016

** I started at 90mg of OxyContin/day in January, and twice I’ve been weaned down successfully (once to 60mg/day, then to 40mg/day) and with my full cooperation.  Recently, my doctor had me step down from 40mg/day to 20mg/day, which I blogged about, and that was very difficult.  My doctor and I decided that it was better to return me to the 40mg/day after a two week trial at a lower dose.


^ It was very odd.  The CNP just sat and stared at me for a considerable length of time, I’d never had a caregiver or anyone stare at me so intently.


^^ It wasn’t.

Now, I’m probably being overly cautious, but I want to get this in print because I feel like the end of her comments on our visit sound as though she’s planning on taking this to whatever committee addresses these things, and in my worst nightmares she might try to get me declared a pill-seeker.

All she had to do was look at my file and see the scans of my cracked vertebrae to understand the need for ongoing pain relief.  Oy vey.

Chronic Pain Revisited

About nine years ago I was diagnosed with Fibromyalgia, which was a kick in the pants.  But I discovered that regular exercise (bike riding for me), vitamin D3 AND cutting wheat out of my diet seemed to help me quite a bit.

Just last year I discovered that ALL wheat wasn’t the problem, just – maybe – wheat that had been processed with Round Up during harvesting. So I decided to stick with only organic wheat and that worked well.  So when I wanted a treat, I’d bake it myself, and we found a really nice organic pasta that seemed to ‘play well’ with my pain.

Now I’m facing a new kind of chronic pain, and this one won’t be made better with diet (although exercise is always good at strengthening the muscles, which help support my body and can ease pain…)

My new chronic pain comes from the damaged vertebrae (crushed? split?) T9 and T10 mostly, along with one lower down in the lumbar area.  These are areas where I had tumors growing during my lymphoma.

My back pain was what alerted me that there was something more serious going on in my body.  Apparently by the time I had my MRI last July and they found the tumors (spine ones, AND tumors in my chest area and back of my skull) the spine tumor had grown SO large that it had grown through T9 & T10 and had split the verts, or done some kind of major damage.

Through the miracle of radiation treatments and chemo, the tumors are gone, and I am in remission, and I am glad and thankful.

But the damage caused to the spine is still there.  It will remain, and it will cause me pain.

Spinal Cord Injury Levels

I have a special knowledge of this pain because, ironically, Gerry suffered with his T9 & T10 when they were crushed (possibly during physical therapy he shouldn’t have been doing) and he had extreme pain.

He had a procedure called kyphoplasty (he was supposed to have vertebroplasty but as they were wheeling him into the operating room they told him that his insurance would only cover the first procedure, not the one his doctor had recommended…)

But I saw how he suffered every day after his diagnosis with the pain.  Gerry was NOT a complainer – not like me, I could win a gold medal if complaining were ever an olympic event – so when he would mention his back pain it was notable.

He took Oxycontin twice a day, every day, and when he ran out of his drug it was dreadful.  Of course he’d usually run out at 5:05 on Friday, just as his pharmacy had closed and wouldn’t open for the weekend.  I started hiding four of his pills so when he’d run out I’d have enough to get him through the weekend.

Different Flavors of Oxy

I take Oxy three times a day, every day, every eight hours.  By the time I get to hour seven, my back is complaining pretty badly, but I pride myself on seldom dipping into my ‘breakthrough pain’ supply of lower dose Oxycodone.

But I ran out yesterday.  So today I was running on fumes, trying to make do with the breakthrough pain med, which is NOT slow-release so it just doesn’t work as well as my Oxycontin (contin=continuous pain relief)

And Andy just got home, at 6:30, from picking up my refill from my own pharmacy, which is across the street from Gerry’s old cancer center & pharmacy, and which stays open later.  Thank heaven.

Standing here and looking forward, to a life where I will need to take pain pills every eight hours to have the strength to just EXIST is hard.  I know there are other ways to ease pain, and I’m a huge believer in acupuncture and water therapy and exercise.  But, and this I know from my 12 years caring for Gerry, there are some levels of pain that have to be dealt with using the strong stuff.

Being from West Virginia, and knowing the effect drugs like Oxy and Hydrocodone have had on so many poor folks who fall into the pit of prescription drug abuse, my Oxy is a bitter pill to swallow (in more ways than one!)

What this guy calls the “Hillbilly mating call.”

I’m grateful that I have insurance (through the ACA, please mention me as someone whose life was saved by Obamacare when you find yourself in an argument with anyone) and I’m grateful that I live in Minnesota, where the coverage is very good.  Gerry’s coverage, ironically, wasn’t quite as good as mine is, so his co-pay was pretty dreadful.  Mine is notable, but I know how high it MIGHT be, and I’m grateful I can afford it.

Today I had Xrays of both knees because the pain has become so severe when I try to walk that it just feels WORSE than my arthritis used to feel.  I don’t know if the pain increase is in any way caused by the cancer, but the pain is so strong that I’m awakened by it several times a night, when I shift my legs and knees, because that movement is enough to send shrieks of pain up and down my legs.

After the past 9 months I’d be happy never to see the inside of a hospital again, but part of me is also wondering if a knee replacement is in my future.  I see an orthopedic doc in a few weeks, the same doc I saw 2 years ago who gave me a shot in my knee that helped quite a bit, and I’m curious to find out if this knee pain can be surgically remedied.

Adult Training Wheels

To that end, I’m actively seeking someone who cycles who has had “adult training wheels” attached to their bike.  I was pondering getting a tricycle, but in honesty I’d rather keep my Trek and use training wheels if that would work.

If you’ve had these training wheels attached to you bike, or know someone who has, and have an opinion about them, I would LOVE to hear it!  I really need to be able to get back on my bike.  I need a non-weight bearing exercise* to build up my muscles and help relieve my pain.  I need to be back on my bike!

The next step will be acquiring them, and having them attached to the bike, but one step at a time!!

*I know you’re going to mention Swimming.  I love swimming, and have no problem with it, but the pool is far from my house and, once there, getting into the pool is a bit of drama with my limited mobility.  If I could get my bike working for my damaged body, it would be available to me 24/7 and would be easier than getting into and out of a pool.

Back In The Hospital

Yesterday I was admitted back for more scheduled chemo, this time a HUGE bag of Metheltrexone (?) was administered after some other chemo drugs, and now I stay at St. John’s for at least 3 days while they monitor me to make certain I’m handing the new chemo well.  THIS is the high-power stuff (40 ml of it) that is the scary part of M=CODEX/Ivac (if I’m writing that correctly…) and I’ve been fearful of it.

Well, now it’s al in, they have me back on fluids (which make me pee like there’s no tomorrow) and I’m back on high dose dexemethesone, too, which has made my blood sugar SOAR up to 500 (I didn’t even know that was possible!) so I’m taking insulin, too.

My entire family has had Type2 Diabetes.  I say, “has had” because my entire blood family – those who haven’t passed from cancer related stuff – has passed from diabetes/heart disease related stuff.  The curse of the hillbilly-high-fat-and-sugar diet, and the curse of living in a cancer cluster (Parkersburg, WV) has taken it’s toll on my family.

I’ve never been thin, but compared to many in my family I’m absolutely svelt.  Right now I’m round as a steroid-pill and bald as Uncle Fester, but when I’m not pumped full of dex I tend to be a bit thinner looking than I am now.

I made the choice when I was 16 to leave the Ohio Valley/WV area and go to college, then to NYC, and not to return.  I knew that living with so much chemical input into the drinking water, so much coal dust in the rivers, and so much deep fried food would play hell with my health, so I chose to live where I could express myself artistically and be the person I always wanted to be – a New Yorker.

I was strongly affected by Television, my first role model was Anne Marie on THAT GIRL!  Later my role model tendencies switched to Rhoda (and I DID work in costuming!) which made it SO ironic when eventually I moved to the Twin Cities.

Am I now channeling my inner Phyllis (post Lars, now…) and will I eventually end up in San Francisco?  Is this part of the blog entirely senseless to those of you born after 1970?  Sorry, childhood role models will remain childhood role models.

I’m not dealing with Gerry’s loss right now.  I’ve made the decision that I will address it in full, with all of the emotions that entails, when I am better able to allow myself to.  I’m not ignoring it, I cry, I’m sad, but I can’t give myself up to the grief and continue with my recovery as I need to.

I hope this doesn’t sound heartless.  It is hard, like missing his memorial service, or not circulating with the dozens of folks who came to the house after the service.  I promised my doc I wouldn’t put myself into close proximity with more than a dozen folks for infection’s sake, and I physically just couldn’t make it to the service. But more to the point, I don’t think, emotionally, I could have extended so much of myself and would have been able to keep the strength I need to get through this chemo, which is so damned hard.

The kids, I’ve been told, did a stellar job.  Max taped it using professional equipment from SPNN, and he’ll be editing it together with some lovely family video that Andy fortuitously had transferred to DVD just a few months ago.  When I have that edit, I’ll post it here so you can all see how amazing my kids are to have put something like that together.  Amazing.

Max will return to college this well, probably while I’m still in the hospital.  It’s been amazing to have him home, exactly what we all needed; a bit of normalcy.  If this current chemo round goes well, I may be starting my FOURTH and FINAL chemo sometime around Nov 12, and then we shall see…

I have no idea, when this whole “cancer” thing is done, whether my body will be as it was before.  I’m getting a growing sense that, like Gerry, I will ALWAYS carry the pain of the tumor in my back and the damage done by it’s growth into two vertebrae.  Will I always be on pain meds to deal with the constant bone & spine pain?  I guess these are things that will be revealed I I continue with my recovery/remission.  Which are lovely words.

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