A New Life of Accommodation

It has been a few months beyond a year that I started blogging. And to tell you the truth, it’s been a little difficult for me to get back into the swing after my latest hiatus. Blogging has been the portal through which I unburden myself of corrosive and heavy thoughts. However, right now it’s all I can do to try to empty my head.

When we are beset with a crisis of any kind we long to return to normal when it is over. All I ever thought about when I was home this summer was the day I would return to the office–if just to have the chance to bitch about the things that everyone else bitches about. A chance to be with people, nudge the mind, and be like everyone else. But in reality the return is not so easy because after going through this it is hard to be like you once were. Indeed, it is wholly impossible.

overwhelmedWhen I was home I was drugged 24/7 with Methadone, Oxycodone, and Lyrica. When you take medications like that on a set schedule and not “as needed” you don’t necessarily think straight. And if you can you’re a far better drug taker than me. Take the day I received a letter from Human Resources informing me of long term disability benefits. I read that letter and thought it meant that I was losing my job. It was completely irrational, of course. But what can I say, folks, this is my brain on drugs. (How I pulled that Facebook petition together I’ll never know.)

Once I returned to work I was happy, but it still wasn’t normal. With the plan my physician rolled out I was essentially working 15 hours per week and gradually lengthening my days. The plan is a sound one and it is working, but I find myself at month’s end still needing another month to lengthen my hours. I never realized that my back was so weak and that it would take so long to build up strength. I guess knitting isn’t the ideal way to strengthen one’s core.

With my return to the office came the realization that I am not the person that I once was. It’s a drag and accepting that will be a process. I taught a class this afternoon and proceeded in my usual way by walking around the room, engaging my students and planting seeds that I hope will take root and grow. When I teach I do nothing else but focus on the subject. Any pain I feel is ignored if not out of my mind completely. But thirty minutes in the pain in my lower back was starting to hold me back. Ten minutes later I needed to sit and finish up my presentation to the students. Gathering up the materials after the students left was arduous. The onerous walk home (all of one block) was rewarded with some Oxycodone and a comfy couch.

So remember that letter from Human Resources about long term disability benefits? Well, I had to revisit it once I realized that I needed another month to adjust. Revisit means that in my irrational drugged state I ignored the initial letter. Well, that is not entirely true. I asked questions, but I was unable to comprehend the complexities. It was overwhelming; every person had a different answer and one even told me not to bother applying. So I finally applied. I can still work part-time, it is retroactive to the period when I didn’t take it (when I should have) and I’m going to be okay. I think. In any case, it’s not forever.

When I spoke with the disability expert I told her my story and how it can be when some folks are alone with no one to assist them with complex information. And although I have no idea how it can be done, my employer–who excels in work/life assistance in many areas–needs to be a part of benefits discussions when individuals are ill. If the employee declines, so be it. But the territory is vast, it is complicated, and it is overwhelming. I am intelligent and can make my own decisions, but I was significantly impaired and that negatively affected the choices that I made.

Cancer just complicates everything. If you’re ahead of it you worry about being behind it. If you’re behind it you desperately push to get in front of it. The day I learned that I had breast cancer I never dreamed that the year to come would be so challenging. I naively believed that I could embrace the pink and I would be okay.

This isn’t what some people term “the new normal.” Nay, it’s just life. It is now driven by medical interventions of all sorts: PET/CT and MRI results, blood work, medications, pain management, and therapies. And, of course, by important financial decisions that in the end are all about quality of life.

All I can do is make the best of it. Suck it up and just do the best that I can, ask for help when I need it, and soldier on. Like my man Marcus Aurelius said: “You have power over your mind, not outside events. Realize this, and you will find strength.”

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Kobayashi Maru

My latest paincation was intense and it was made more so by the experience of radiation. Now, like most things in this disease I was fortunate: only five consecutive days and maybe twenty minutes of my time each day. But the experience was surreal and it set off emotions and reactions that have left a permanent impression on my psyche.

I was anxious to get radiation to kill that tumor in L4. It was causing me unrelenting and intractable pain. And though the narcotics helped to get me through that pain, the side effects on my bowel health were too burdensome, painful, and frankly embarrassing. I was excited when I went for my first visit to get things set up. And, frankly, the first treatment was unremarkable.

Except for the machine.

On my first day I was escorted to the room and I met Varian, the machine with which I would be acquainted for the week. Right from the beginning this machine had a personality that filled the room. Had it been human, the machine would have made a fine model for a villainous character on Law & Order.

The machine was fat, a dull gray, and possessed no trace of a sense of humor. Its head emerged from the machine and looked down with one big eye. Right away the relationship was one of power–and I didn’t have it. I was escorted to and laid flat on the table. The technicians lined up the tiny dot tattoos on my skin with lasers, got me in perfect position, and then they left the room. Lie perfectly still, I was told. It was just me and the machine.

Without warning the machine came alive. Two arms emerged and expanded from the machine. One arm came out from overhead, its terminal end looked like an industrial street lamp with black coils in its center. Its stare was ominous and I wondered what purpose those black coils filled. Opposite this arm another emerged and expanded, this one ended in a flat panel. Though it was controlled remotely, in this room all alone the machine seemed to move under its own power. My eyes darted from side to side and I strained to take in as much peripheral vision as possible. What was happening? Clicks and the strained sound of machinery in motion were heard and, just as soon as they had emerged from the core of the machine, they retracted. I was not sure what had just happened. But the machine had come alive and this disturbed me.

Once the arms were tucked in, the machine turned and I saw its gold eye staring down at me.varian1 Inside the eye an iris of sorts; a curtain that was tightly closed then precisely parted in the center to create an irregular shape. This must be the shape of the tumor, I thought. It was through this eye that the tumor and the eye would communicate. Only it was a one way communication. A loud industrial drone was heard that lasted 20 seconds.

ERRRRRRRRRRRRRRRRRRRRRRRR. Radiation had just been projected through my body and I didn’t know how to feel. I looked around the room. Quiet. Cold. The eye circled around my body and was just out of my view. I heard the gold eye disc turning and clicking into place. I closed my eyes and saw mushroom clouds, people burned, silhouettes of ash. Wait. Don’t be ridiculous, I thought. This is not the same kind of radiation.

ERRRRRRRRRRRRRRRRRRRRRRRR. Twelve seconds this time. It rotated again, and twice more. Each time the fine tuning of the disc punctuated at the end by the drone of the machine and the radiation that bombarded one area of my body. Then suddenly there were two technicians in the room. “That wasn’t so bad, was it? See you tomorrow!”

No, it was bad. I just had a barrage of radiation launched into my body. Controlled, precise, and planned by experts in their discipline, but radiation nonetheless. Don’t you get it? What was happening to the tumor? Do cells scream? How many had been killed on the first zap? How many others were dying with burns and pain? What exactly was happening inside my body?

The second day was the same. The machine’s arms emerged from its central core and encircled me, the iris assumed its shape, the eye disc turned and clicked into position, and then ERRRRRRRRRRRRRRRRRRRRRRRR. It was like a horn of doom. Over and over. Five times. “You’re doing great! It’s not so bad!” I wanted to smack her. Day three replicated the previous two.

On the following day I could not lift my head from the pillow. It was all I could do to consciously arise and see to the well being of my feline companions. I slept and slept. All day and all night. Exhaustion from the treatment, I surmised. My physician said that this may happen. I tried to call the center to tell them I was unable to keep my appointment and I could not find the number; I called another and asked to have the message relayed to the technicians. One hour after my scheduled appointment the telephone rang: “Hello, Ms. Barrington. Where are you?” I explained that I tried to call and that I was unable to move. Every cell in my body was hit was exhaustion. “Oh, I don’t think so,” said the patronizing voice. “You shouldn’t feel anything like this until after treatment! See you tomorrow!” Click! I couldn’t even respond. What a patronizing bitch.

Day four I started to feel it: anxiety. I didn’t want to go. I didn’t want to sit under that machine again. That machine with the arms and the weird eye with the iris. I didn’t want to listen to that drone of doom or have that bitch tell me that everything I perceived was not real in her condescending sing-song manner.

My radiation oncologist prepared me well for symptoms, even if she thought that the chances were slim that I would experience them. The most obvious was nausea; because of the location it was unlikely that I would experience nausea, but if I did I was to tell the technician. The night before day four I had nausea. I didn’t think it was serious, frankly, but I followed instructions and told the technician before my treatment. “I don’t think you did,” she said. “Patient’s come in all of the time and tell us about symptoms they don’t actually have.”

“Did you ever have radiation,” I asked? “No, I have not,” she answered. “Then how about when a patient tells you what they feel you cut the patronizing know-it-all bullshit, treat them with respect, and consider that what we tell you might actually be true. What do any of us gain by lying about it?” Speechless, the technician passive-aggressively went through the motions. The machine was as imposing as ever and I was even more wary–of both the machine and now that one technician.

Having missed a day, I returned to my last treatment on Monday. I was anxious about it, but I dutifully went. A different technician this time; a kind young man who was professional and empathetic. I met him before and liked him a lot. The machine came alive for the last time. Its arms unfolding and stretching ominously. The eye and its adjusting iris and the rotation and clicks as it determined the precise angle then shot radiation through my body five times.

When I left I had trouble reconciling the two sides of radiation: supervised death of human and animal populations and supervised cell death. Abruptly, I dropped off the grid. My blog and all of its associated social media went quiet. A week or so later I visited family, but the skin on my back was still warm and the thought of radiation in my body obsessed me. I browsed through old photos of me and my friends swimming on Florida’s Gulf Coast. I wondered aloud why we couldn’t all go back thirty years to youth and health. When I boarded the bus to return home, I had no idea what would manifest once I arrived home.

20130914-152121.jpg By the time I arrived in the New York City Port Authority my brain felt like an omellette; I couldn’t separate logic from fear. It felt like the city was closing in on me. During the ride home I grew increasingly convinced that I would die in the taxi before I arrived home. Everything felt alien and uncomfortable–even my home. It made no sense and I wondered what was happening to me. As joyous as I was to see my feline companions–and them me–I didn’t want to be home. Something wasn’t right; I am always happy to be home. On sight of a pile of mail I started crying. I didn’t unpack. I was unable to eat. This wasn’t anything like that panic attack last December that was over in two hours or so. I saw no end to this. Every exhale was accompanied by a pitiful verbalization or manifested as a heavy sigh. I couldn’t get out of bed. Every sound, every smell, and every texture was repulsive to me. I was useless. Paralyzed.

Finally at wits end, I called my psychiatrist in a sobbing hulk of uselessness. Afraid to leave the house and travel, my friend Iris came to hold my hand and accompany me to his office. Face-to-face I cried and wailed, not understanding who this person was. I regretted everything, and for the very first time in the year since I was diagnosed with breast cancer I asked why. Why did this happen to me? I was powerless and felt as if I was falling off the edge of sanity.

Three hours later I experienced medical intervention with Xanax. I never took it before and even with these horrific symptoms I wanted to resist. I had enough of drugs, I said. But a little window of logic opened and I realized that I had no other choice. My friend stayed with me until I could no longer keep my eyes open and I fell into a relieved, quiet, and hopeful sleep.

It took two days to feel completely whole, but a positive change was felt and I once again could think rationally and look forward to the future. Suddenly I couldn’t wait to return to the office, to be with my friends, and to enjoy and embrace life. I was back to my normal self and I only wanted to look forward.

One of our community’s mutual friends, Nancy Schneider, calls cancer a total mind fuck. And, honestly, there is no other way to see it. Over the past year I have seen disease appear, disappear, grow, reduce, and die. I’ve experienced intractable pain, seen my career affected, my finances hit, learned the deep value of friends and family, and I am learning to live in the moment–not just in the present.

This is a test I can’t win on a level playing field. The only thing I can do is cheat with the help of my physicians, learn to bypass crises, and know that regardless of the chaos inside I am a strong and ever-resilient woman who is prepared to stay ahead of this sick game known as breast cancer for as long as it feels right. Were that this was only a fictional game that took place in a fictional classroom and not inside my body and mind. Kobayashi Maru, indeed.

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Purple Haze

This is what my knitting looks like these days:

Knit 4, yarn over 1, knit two together, knit 23, Yarn Over 1, Knit 8  . . . oh wait
knit SEVEN!  Okay, unknit 1.  Now continue . . . knit 7, yarn over, slip slip knit, knit 8 . . .
Oh shit.  I’m knitting the wrong row it should be row 11 not 13!  Dammit!  (Proceeds to individually unknit the entire row of 131 stitches.)

Start over: knit 4, yarn over 1, knit two together, knit 17, slip slip knit,knit 16, slip slip knit, knot 13, yarn over, slip slip knit, knit 11, slip slip knit, yarn over, knit 1, yarn over,knit two together. . .  Balls!  I’m knitting row 13 and then my eyes slipped and went to row 11 again!  Holy crap!  (Proceeds to individually unknit the entire row of 11. )  Okay I’ll start from this place on row 14.  No, is this right?  No I don’t think this is right.  Count again.  Fuck it, let me unknit the entire row of 131 stitches.

Knit 4, yarn over 1, knit two together, knit 17 . . . eventually finishes row 13.  Oh for fuck’s sake!  I knitted the second half of the design before the first.  Unknit the fucking row  AGAIN!

This is what knitting, my chosen craft of meditation, has become of late.  One cluster fuck row after another.  If I had actually knitted each row correctly from the start, I’d have finished this lovely baby blanket already.  But I am determined to soldier on.  I feel as if the little tag I attach to the blanket should read “Made for you, with love, Scorchy and Methadone 5 mg.,t.i.d.”  Let me start from the beginning.

CaptureOxycodone wasn’t cutting it.  I’d take a pill and and look at the clock in anticipation of the next dose: “TWO HOURS?  I CAN’T WAIT THAT LONG!”  But I did and the same tired scene would play itself out again and again.  I visited my pain doc and asked for something long acting.  We talked about the pain, which I described as burning and constant.  He threw out some names, but said one alternative was the best choice, but it did have somewhat of a stigma attached to it: methadone.  For me, it would be the perfect long-acting opiate for my kind of pain.  If I felt as if I was in a fog and sleeping all day, I could bring the dose down to twice a day.  My pharmacy didn’t carry it, so I proceeded to walk down Broadway and one visit after another until I found someone who carried it.  Each visit played out like this:

Looks at me cautiously.
Pharmacy: “We don’t carry this.  We can order it, but it will take 7 to 10 days.”
Me:  “Okay, thank you. I will try elsewhere.”
Pharmacy: Hands back ‘script and looks at me like they’re memorizing me for the ensuing query by the police.
Me: “I’m in pain. I don’t do drugs for recreation.”

It’s nice when professional pharmacists judge you with a valid prescription.  Defeated–and sore from my seven block excursion–I called the doc.  He was able to locate a specialty pharmacy for me very close to my home and only a few hours later my experience with methadone began.

First there’s the inability to do anything more intellectually challenging than petting the cat.  I didn’t realize this, of course, until I tried to actually do something.   I gleefully took on a job to manage a large non-profit project.  I wanted so much to do this as it was a perfect match for my professional skills and I could help out this organization.  Much to my horror and surprise, I couldn’t do it.  It turns out that every time I would face this keyboard I wrote about twenty words, stopped and allowed my head to droop.  I wrote the perfect mission statement.  The statement was loved and approved by all, until the dragon set it on fire and told me that it needs more work.  “Now look here,” I said, finger slowly moving up and down, clearly pointing at something in the air.

Okay, that was a bit startling.  I don’t recall ever waking up with a foot in reality and a foot in dream sleep.  Nothing to fear.  Just The Little Methadone Dinner Theater.   Some hot tea and a small breakfast jar me into reality.   I try to do some simple housekeeping, read some, and poke people on Facebook.  But I’m too tired to write or do anything that involves detail and conversation.  Hell, this blog post is killing me.

But the one thing I do not have in excruciating abundance is pain.  It is now uncommon for me to reach for Oxycodone for breakthrough pain.  But it is not the same as not having any pain at all.    I mean, dreaming is really intense–to the point that I wake up reaching for invisible toast and orange juice.  I am easily overwhelmed by intellectual pursuits–and I also include simple tasks such as paying bills, answering emails, and the like.  I need help to full out forms and writing is a challenge.  When I am hit with  everything at once I get anxious and upset.  Another little side effect from taking opiates is a spontaneous twitch: hands, fingers, legs, arms, toes, shoulders. Dayum.

And people take this shit to get high?  Fugheddaboudit, you crazed morons!

After many months of waiting, I begin radiation to L4 on Monday, July 29.  After ten treatments, it is expected that the tumor will be killed and the pain eliminated.  The site will have to be monitored for some time for fracture or collapse. But right now it’s nice to see something actually happening.  I  look forward to going back to work by Labor Day.

You know, it is impossible to wrap your head around metastatic breast cancer.  I told someone today that instead you deal with small sections of it at a time.   And that’s what it all boils down to: small sections of time.  It’s impossible to deal with all of it.  It’s like opening Pandora’s box–seeing all of that crazy shit at one time will drive you mad.  It wasn’t until this very moment that I looked to my side and realized that this treatment isn’t the end.  It’s just one step to whenever I decide that there have been enough steps.  That’s some scary shit.  Terrifying.

CaptureDon’t get me wrong.  I’m happier than a pig in shit about tomorrow!  I can’t wait.  Hell, I grew up and spent most of my life in New Jersey so I know something about Super Fund sites and glowing in the dark.  I can take it.  And with good fortune at my back, I will be back at work by Labor Day.  And laboring for some years to come.

Secure your tin hats, people.  I’m going in.

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Emergency Room

It has been awhile since I have posted.  I apologize for my silence; you can probably reason that it takes quite a bit to shut me up.  And you would be right.  But this paincation has been particularly brutal.  And since misery loves company, have a seat and I’ll bring you up to speed.

So May was a wash and a bit of a traumatic month in the larger sense as I learned that Tamoxifen had stopped working and the lesion in L4 had progressed.  I wasn’t too surprised, really.  I had a nerve block in the beginning of May that felt good for about three or four days and then I was feeling that deep burning bone pain.  A new plan superseded the old: force me into mentalpause with Lupron and change the anti-hormonal to Letrozole.  Another reason for such an extended paincation can be laid at the feet of the insurance company.  Two weeks for this, three weeks for that, “we need to contact your physician to conduct a peer-to-peer review.”  This procedure denied; that procedure approved with exceptions.  It’s shameful, really.  Meanwhile I was in pain, but using my pain meds wisely.

June wasn’t any better.  The insurance company denied the nerve ablation that was to take place at the beginning of the month.  Twitter made it possible to highlight their inaction and after my tweet, I had an email address within five minutes and Cigna made it right.  Doc Pain said it was the easiest peer-to-peer he’d even done.  The folks at Cigna were actually quite nice and professional and all was fixed by week’s end.  Public shaming.  Maybe the Puritans were right about something after all.

But in the end it was too late to be effective.  Because nerve ablations are done on a particular schedule in the office, the entire month of June was a wash; it wasn’t done until the last week in June.   I begged my doctor to release me to work.  In my heart of heart’s I knew I wasn’t up to it, he told me I wasn’t up to it but I protested.  I went back and lasted two days.  Surely if I wanted it bad enough I could do it, right?  Thoroughly humiliated from the experience, I stayed home.

And July.  In addition to the third month of my paincation, this month marks a year from when I was diagnosed with this lousy disease.  It has been a particularly rough year, but in ways not considered “routine” by breast cancer standards in popular culture.  You see, I’m an invisible breast cancer patient.  I have my hair, I have my breasts, and I even have my tumor (but not next to the wisdom teeth I still have in my drawer).  Unless you know that I have breast cancer, I look none the worse for another year’s wear.  You can’t see pain.  You can’t see disappointment.  Sadness.  Confusion.  Career in shambles with significant people already writing me off as dead.  No, I’m fine.

You know that 1 to 10 pain scale that hangs in your doctor’s office?  That is such bullshit.  If “10” is the absolute worst pain, then I’m thinking an angry face with fists punching out a wall is more appropriate than the sniveling sad face.  Obviously a pain scale created by someone who had never felt pain at a “10.”  Most of my paincation can be rated somewhere between one of those little faces smirking and flipping the bird and the little face punching out a wall.  Better yet, let’s make it between 4 and too serious for numbers.

Capture
This past Saturday I was looking forward to having dinner out with friends.  It was also an opportunity to meet some new people too, so I was psyched.  I haven’t been able to get out a hell of a lot.  But karma had other things planned for me.  I’ve been taking 2-4 doses of Oxycodone a day (often less, quite frankly) since May 1.  When you take opioids, the first thing you need to be mindful of is constipation.  And I had been doing a pretty good job of staying ahead of any troubles.  Drinking lots of water, taking the necessary pills, and eating fiber and whole grains.  Like anything else, though, for a few days I began to slide a bit and wasn’t drinking water as much as I should have.  And just before I was to leave for dinner, what I thought would be a routine pit stop turned into the worst case scenario.  I was hit with nuclear constipation.  Yes, the abominable impacted bowel.  So when my friends drove up to the building to get me for dinner, they actually wound up taking me two blocks to the emergency room.  Once we arrived I sent them on their way as other people were expecting them at the restaurant.

It was, as you might imagine and without a doubt, the most embarrassing and humiliating circumstance, but there was no choice but to address it and get through it.  But that turned out to be harder than I thought it would be.  In addition to the primary complaint, my back was sore.  This whole paincation is the unhappy intersection of bone pain and a 30-year-old laminectomy.  I laid on the gurney using my folded shorts and sweater as a pillow.  I was cold and uncomfortable, and as more time went by I was less and less able to advocate for myself.  I was so cold I was shaking.  The Scorch, who can usually strike an intimidating presence, became more and more like a spent firecracker.

I texted my sister to let her know what was happening and she was sick that she couldn’t be with me.  She asked if anyone was with me and I answered:  “No. I’m alone.  As always.”  That response was not hyperbole.  Since the day I was diagnosed I have faced this bloody disease alone.

I found out I had breast cancer alone, had biopsies alone, and learned the results alone.  I faced hours waiting for appointments and tests alone.  There was never anyone to hold my hand when I was scared.  No one to ask the questions I forgot or to advocate on my behalf when I was too tired or too high to do so myself.  There was no one to nose around for information while I was busy getting blood drawn or an x-ray done.  No one to make a decision because I kept insisting on making the stupid ones (more on that later).  No one to help me sort through the pile of unpaid bills and unopened letters because I’m so otherwise overwhelmed.

This is in no way a passive aggressive complaint about my friends.  I have the best friends in the world.  Indeed, you would be hard pressed to find better people.  Unlike a family member who can be blackmailed into spending hours of wait time with us, we have more respect for our friends!   I could probably have a long line of people wanting to hold my hand, but I don’t want to impose.  (And, no, this is not a passive aggressive request for anyone to do so.)  Colleagues, the greater #BCSM community, and the blogosphere have all been incredible.  My friends have made me meals, brought me dinner, and sat and watched movies with me.  They’ve always been there to listen and to support me.  And as wonderful as they are, I wouldn’t shoulder any of them with the responsibility to, say, be my emergency contact.

Indeed, I have no emergency contact.  Mine is the story of those women and men who don’t have one.  The people who go to the ER alone because essentially they have no other choice.

I was waited on very quickly in the ER, but a change of shifts complicated things just as the department got busier.  I didn’t know how long I would be laying there.  The methadone I took earlier in the day had begun to wear off and the bone pain was building.  The ER nurse checked on me once in two hours.  She never so much as offered me a blanket or a cup of water.  And I was increasingly unable to advocate for myself.  I had texted my friend Marie on and off; when I texted her again at 9:00 pm she was surprised to learn that I was still there (I had been there since about 5:15).  She asked me where the emergency room was located and she was with me in 30 minutes.  Once she arrived she advocated for me.  She found a blanket that helped keep me warm and gave me some dignity.  A small pile of gowns served as a perfect pillow.  She held my hand and joked with me.

After I took the Valium she sat with me and urged me to sleep, and she made sure the doctor didn’t forget me before it wore off.   She stayed close by during the indelicate procedure and was right there to rub my shoulder for comfort when it was over.  And once the back pain increased to the point where I began talking to myself as I lay on the gurney, she made sure I got my discharge orders and was able to leave.  When we left the ER, we crossed the street and she had to stop me from walking the two blocks home and hailed a cab. (See what I mean about stupid decisions?  You don’t think straight when you’re in pain like this.)

As Marie trekked to the pharmacy to get stuff, I took a shower and tried to regain my dignity.  And when she came back I told her that this had been the first time anyone had ever shared the burden with me.  It made such a difference.  I was free to be the patient, free to hurt, and frankly free of the responsibility of holding it together.  For the very first time.

I wrote not too long ago how hard it can be to face disease alone.  But it was the laundry, the cleaning–those practical every day hurdles.  The art of distraction when I decide to look at disease in a larger context.  But I hadn’t really considered what alone really meant until I lay there in the ER, pain coming from two locations, the one slowly and consistently taking me over to the point where I could no longer really advocate for myself.   To be able to lean on someone, instead of having to keep it together.  The love that comes through someone just holding your hand.

If you have it, never take it for granted.

If you don’t, I am there with you.  I know how you feel.  And, yes, it blows.

Posted in Advocacy, My Stage IV Life, Stage IV Musings | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 72 Comments

Seeing Stars

There’s a popular saying among knitters: “I knit so I don’t kill people.”  Over the past two months I’ve  been saying “I knit so I don’t kill myself.”

This paincation has been brutal–thus my prolonged absence from the blogosphere.  When that nerve block failed to work in the beginning of May and my back pain began to increase, I knew that something wasn’t right.  I found out, ultimately, that the tumor in L4 had progressed in size.  The MRI revealed it to look like fungus growing on a tree stump.  And a far cry from what it looked like in August of 2012 when I first learned that the cancer had metastasized.  And the pain from this cluster fuck of cancer mishegoss?  Sixty one days of hell.  And counting.

Capture
The Tamoxifen stopped working and this lytic lesion was the bell weather.  A PET/CT confirmed progression and I had to take a new approach.  But you know how it goes, you start a new regime and you have to wait to see if it’s actually working.  I got my Lupron shot and started Letrozole in May.  In the process of waiting to see if this is working, the tumor is going to continue to grow.  It’s eating me alive.

The nerve ablation that I had just under two weeks ago was successful in that I no longer feel like someone has hit my shins with a bat, but the pain is still in my lower back from the lesion itself.  So the story is far from over.  The next chapter will include targeted radiation to the tumor to finally kill the fucker.  I don’t have a choice as this thing has the potential to cause permanent nerve damage, if it hasn’t already.  In addition to killing the tumor it should also eliminate the pain.

Even though there was still localized bone pain,  I was able to return to the office this Monday.  Wheeee!  I went home about two hours early, but I was still happy.  After all, it was my first day back in two months, I could cut myself a little slack.  And I loved being back in the office.

I got hugs from my wonderful and amazing staff and enjoyed making contact with colleagues.  Tuesday I was adequate, but as the day progressed I began to feel wonky.  I had a follow up with my pain specialist and told him about my increasing discomfort.  We both knew that this was from the lesion itself and it was time to nudge the radiation oncologist to get things moving.  My doc gave me a new prescription for Oxycodone and I hobbled around the corner to the office of the radiation oncologist.  The office receptionist was very kind and took my message and even followed my instructions to underline pain five times and end the sentence with five exclamation points.  He hand delivered it to the doc.

I hailed a taxi on 5th Avenue and couldn’t wait to get home and grab something for pain.   When I arrived home I added 5mg to the 10mg I was already taking (from a prescription last October–I had one pill left) and barely nothing.   I ultimately fell asleep, but woke often to find myself moaning audibly.  It was an awful night; all compounded by an urgent call to the pain service that was never returned.  Fuckers.  (My doc wasn’t on call.)

Among other things my doc told me to double my dose of Oxycodone to 20 mg until we meet again in two days.   So far it hasn’t worked very well at all, but I have learned two things as a result: 1) When it comes to Oxycodone, I can’t knit under the influence of anything over 10 mg  and 2) I don’t need fireworks this Independence Day because I’m already seeing stars.

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The SCAR Project: VICTORY!

Some weeks ago, I initiated a Change.org petition to address what I thought were problems with Facebook’s policy regarding images of mastectomy.  A handful of images had been removed from The SCAR Project‘s page and the project’s founder, David Jay, was banned from posting for 30 days for being in violation of Facebook’s terms of service.  In addition, some months ago Anne Marie Giannino-Otis faced a similar problem when she posted her own mastectomy images on Stupid Dumb Breast Cancer.

So many women have pages that help to educate women and men about the realities of breast cancer.  Each, in their own way, actively pushes against the pink tide that focuses solely on awareness and early detection and keeps the reality of what this disease does to so many.  But these images are vitally important in that each tells a story;  and as they do, they begin to heal those affected and they open a healthy dialogue in the public and the private sphere.  I did not want these stories silenced as the result of a vaguely written policy that left these images vulnerable to individuals who would report them because they were personally affronted.  These images are posted within a particular context; this isn’t about sexualized breasts or objectifying women.  This is, quite simply, about life and death.

As the number of signatures began to grow and media outlets picked up the story, Facebook reached out to discuss the issue.  To be clear, the Facebook representatives with whom we spoke that morning were neither hostile to the issue of breast cancer nor to images of mastectomy.  Far from it.  But the fact remained that the Facebook policy on posting images of mastectomy was so vague and ill-defined that it provided little guidance to both the individuals at Facebook responsible for reviewing reported content and to those who wanted to post their images.  [Please note: Facebook does not actively search for content to remove, but only reviews content after it has been reported.]

I am really pleased to tell you that conversations among Facebook representatives, David Jay, Change.org representative Stephanie Feldstein, and me have resulted in a much improved policy regarding the use of mastectomy images on Facebook.   Where the former policy vaguely allowed images of “the mastectomy process,” the images are now correctly placed within the context of breast cancer and their importance in raising awareness of the real scourge of this disease and supporting those affected by it.  This is critical as it will assist those whose responsibility it is to review reported content.   And it will also help those who wish to post images of mastectomy on their personal pages.  In a very real sense, this is a victory for both Facebook and its users.

As world events go, this is a relatively small thing.  But this just goes to show that when we collaborate with one another on something bigger than ourselves we can effect really positive change.

Yes, we really can.

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Lupron

So as I was baring the upper left quadrant of my left butt cheek for the Lupron injection that would force me into mentalpause, I took a look at the clam shell packaging for the syringe and medication.  And there he was:  Lupron Man!  Smiling, happy, not a worry in the world.  I mean, what the hell is this?

Lupron Man

No.  No!  I don’t want to see Lupron Man.  In my humble opinion, I put forth this suggestion.

Lupon Man.2
Lupron Lady!

Truth in advertising.

Posted in Advocacy, Just for Laughs, My Stage IV Life | Tagged , , , , , , , , , , , , , , , , | 30 Comments

Progression

When I ended the call I stared at the screen looking for an app that I could consult for answers.  But the reality?   There was no app.

I had just spoken with my oncologist and learned that Tamoxifen, the drug that had served me well for nine months, had stabbed me in the back.  Little fucker.  The cancer had progressed.  The PET/CT from the previous day showed that there was more uptake in the right breast tumor (though it had stayed the same size), something in the left breast looked suspicious, and there were some new spots in the sacrum.  The lesion in L4 had enlarged as well.  But I knew that part.  I could feel it in the debilitating back pain that has kept me home for the entire month of May.  The scan just confirmed what I had long suspected.

However, it wasn’t all disappointing news.  After all, the lung lesions didn’t show up and there was nothing lighting up the lymph nodes.

So where do I go from here?  In some ways, I wonder if I’ve fully wrapped my head around my diagnosis.  Hey, Tamoxifen was offering consistently good news and it was very easy to be lulled into a safe little zone of denial.  I knew there would be a progression as menopause and Tamoxifen met on the battlefield.  I just hoped that I would get one full year out of it.  And it turns out that I’m nowhere near menopause, so Tamoxifen sold me out.  I wonder what it was for?  Cigarettes?  Some extra scratch for entertainment in the seedier sections of the city?  Or maybe it just wanted to skip town for new horizons.

I took that pill every day at 6:00 pm for 286 days.  It inspired the most consistently popular post “Ten Things to Do with a Bottle of Tamoxifen.”  However, perhaps I should modify the title a tad as I have the addition of one more idea.  “Ten Eleven Things to Do with A Bottle of Tamoxifen.”‘

Flush 'Em!  How saweeet it is.

Yes.  This is the very best thing to do with a bottle of Tamoxifen.  Amirite?

So what’s next?  Induced menopause with a shot of Lupron every three months and a Femara pill every day until whenever.  I’ll get my shot of Xgeva every month.  The tiny calcification of the breast will be monitored closely.   And, finally, a consultation with a radiation oncologist to discuss the possibilities of targeted radiation to L4 to both relieve pain and to end the life of persistent cancer cells that are making my life miserable.  Between the enlargement of the lesion in L4 and the pain caused by the spondylosis, it’s enough to make me eat glass.

I have been out of the office since May 1.  June isn’t looking any better.  I can’t begin to tell you how demoralizing this is.

As I began to digest this latest news I wondered if I’d make it to 55.  Would I be one of the many women and men to die in two to three years?  I was hoping for ten, frankly.  After all, technically speaking one of those years is almost behind me.  I was diagnosed in July 2012–that’s less than one full month away.  I don’t care who you are, you know you’ve thought of this.  And I think of this a lot.

But, as much as I ponder it from time to time, I don’t dwell on this stuff.  It results in nothing of merit.  Nothing.  You can wind yourself pretty tight thinking of every bad scenario out there.  But what good will it do?  No, you must live in the present, in the moment.  Enjoy it, press through the pain as much as is possible, and look forward to good things.  For me that is going back to the office, knitting, going to museums, and being with my friends, my felines, and my family.  You don’t have to go skydiving or the cruise of a lifetime to enjoy your life.  Hell, I can have fun and stir up trouble just sitting on my couch.

Still, it isn’t easy navigating this thing.  It’s like driving on the New Jersey Turnpike: one traffic jam after the other, an unofficial speed limit of 95, and construction.  Always effing construction!   You just have to get through the jam so you can enjoy the ride and not worry about when the next construction jam will loom ahead.  I’ll just stay in the right hand lane, take my time, and enjoy my ride.  I have no plans to exit just yet.

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The SCAR Project: UPDATE

Overall, my meeting with Facebook to discuss my Change.org petition was really positive. Facebook’s representatives said they’re fully supportive of The SCAR Project and that they do allow mastectomy photos – but there’s clearly both internal and external confusion that’s leading Facebook employees to remove these photos when they shouldn’t.

Facebook has promised to send me some clear next steps they’ll be taking to address this issue, and I’ll share them with my Change.org petition signers as soon as I get them.

I have Stage IV breast cancer. It’s going to kill me. I didn’t have a mastectomy, but I see pictures of these women and men who’ve had one, and they give me strength. They communicate the urgency that we need to find a cure, and soon. They validate that the experience of breast cancer is brutal and life-changing, and you’ll never be the same again. It’s essential that other people be able to witness the reality of breast cancer through these photos. Breast cancer is not a pink ribbon.  And I will keep fighting alongside my 7,000 Change.org petition signers to make sure Facebook lets them.

In the meantime, please keep sharing the petition and letting Facebook know how important this issue is to all of us.

 
fb petition
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The SCAR Project

I was benignly checking Twitter one day when I saw a tweet from Anne Marie Ginanni (Stupid Dumb Bread Cancer) that Facebook was taking down pictures from The Scar Project’s FB page.   A further tweet by David Jay, the photographer who undertook this project, informed us that Facebook had also banned him from posting for thirty days.

Why is this important?  Facebook, in its decision to censor these photographs, has placed the project’s images in the same category of images that objectify women and sexualize the female breast.  We all know that breast cancer is not a pink ribbon, but Facebook seems to think that images of amputation or reconstruction is erotic and therefore a violation of their terms of service.

To call attention to this misguided policy and with the desire to change it, I have started a petition to call Facebook’s attention to this egregious policy.   Please take a few moments, to view The SCAR Project and then click on the image below to sign this petition.

fb petition

Posted in Advocacy, Social Commentary | Tagged , , , , , , , , , , , , , , , | 31 Comments