The Year of Living Cancerously

Some time last December, I went to bed wondering what calamity 2014 would hold for us.  The answer came back quickly:  cancer.  I put that out of my mind and went to sleep.  Little would I know how uncanny that speculation would be.

Early in 2014, a neighbor harassed me while I was rolling Kid O out to her bus. I  restrained myself from acting impulse to tell her not to yell at me because I had cancer. I was beginning to wonder about it, but I hadn't even been to a doctor.

A few weeks later she yelled at me again, and I sat there thinking what could she possibly say to me that could be worse than what I'm worried about.  I never responded to her.  I may never know why she is angry with me.  I was about to experience far worse.

The trials I had been through prior to cancer prepared me for it, or so I thought.  As I wrote in my poem, Cancer Is An Unpretty Picture, "I have rolled in larger dung heaps than you."  But I wrote that before my third round of chemo.  Little did I know then how chemo would throw me for a loop.   The moral I suppose is not to taunt an enemy until you've experienced its full strength. 

While I was undergoing chemo,  Mrs. T. finally confirmed the rumor that Kid O's beloved teacher, Ms. AK. had died of cancer. I had suspected as much. Weeks later another one of the Special Ed teachers told me that Ms. AK had refused treatment.  I suppose that, given her overall health, chemo and surgery would have been too much for her body to endure.  

Now that I know I know how difficult an ordeal cancer treatment can be, I am much more able to accept an individual's choices.  I am glad that Ms. AK died in peace, and not in pain and discomfort one gets from undergoing chemo and all the rest of cancer treatment.  Do I wish that she had had a different outcome?  Of course.  Just as I wish it had been different for Sweet Sue. As I underwent my cancer treatment I thought of everyone who died of cancer, but I especially missed these two woman.  Many a time I wished Sue were here to reassure me.

I hesitate to contemplate what else may be in store for me.  I vacillate between fear and triumph.  I have developed more patience with other people, but an increasing impatience with myself.  I need to remind myself daily that I have been through a tremendous ordeal.  From early June through September, my body was pounded with chemicals which was rapidly followed by two surgeries and twenty-eight days of radiation.  All of this has unspoken side effects that will take many months if not years to overcome.  

I've been called brave.  I've been called courageous.  I continue to be perplexed by that. I never felt brave. What is courageous about doing what needs to be done?  To me, real courage comes when faced with reality that nothing more can be done.  Surrendering with grace.  Or perhaps not going gently into that dark night, as Dylan Thomas so eloquently put it. Stage Four people will always be my heroes, whether or not they survive.  And so are people who face equally difficult and possibly life threatening illnesses.  

I have endured the unholy trinity of chemotherapy, surgery and radiation. Now I cling fiercely to life, and I hope that I will meet whatever challenges 2015 sends my way with good grace and good humor.  

My birthday is coming up soon.  I have a slogan as I look back on what I've been through.  "Fifty-seven and not in heaven."  I want it to remain that way for many more years to come.  

And with that, I bid you all a Happy New Year.  

A Farewell To Breasts

I no longer have breasts.  When I had breasts, I used to imagine doing a stand up routine about them.  Being the anti Phyllis Diller.  I even imagined laughing like she did. "A ha. A ha.  A ha ha ha ha."  Jokes about how my breasts were so large that they entered  a room five minutes before the rest of me did.  How they used to hit me in the face if I wasn't careful when I rolled over in bed.  (That really happened a few times.)

I've had breasts since I was ten. Or so it seems.  I remember being with my mom at Montgomery Ward's to buy a training bra.  I remember thinking how ugly it was.  I have a distinct memory of being three or four and seeing my mom's naked breasts, and her saying, "I hope you never get as big as me." My paternal grandma was also large breasted.  It was inevitable.

I don't remember being flat chested.  I went from nothing to 34D.  I never really could  wear a blouse.  They always gapped somewhere.  Things only got worse when I got married and gained weight.  Two pregnancies later, I weighed slightly over two hundred pounds.  Part of that weight was that I had gone from 34D to 38D to 44I.  When I tell nurses and others post mastectomy that I was once 44I, they are amazed.  I am only 5'2" and small boned.  When I saw my oncologist after the surgery, she pointed out to me that I was still slouching.

When the oncologist starting laying out my treatment plan at the end of May, she did not mince words.  Chemo. Double mastectomy.  End of story.  She has since added radiation.  She also changed it from a double mastectomy to a single mastectomy and reconstructive surgery.

I chose a double mastectomy for the simple reason I didn't want to deal with the awkwardness of prosthetic breasts, especially when it became clear that there would be months between radiation and a second surgery.

Part of me was relieved about it, because I had been so top heavy for so many years.  Part of me was sad. Sad that my left breast had cancer.  Sad that my right breast had to be unfairly taken.  Angry after the fact when the oncologist told me that the tumor had shrunk to 5 mm.   Why did my breasts have to be removed at all?  Of course they had no way to know that until after the fact.

Even though I knew the double mastectomy had to happen, I never said a proper farewell.  Perhaps it should have been some ritual.  Perhaps alone.  Perhaps involving my husband.

I used to imagine conversations between my breasts and me, the right one complaining that it wasn't fair.  I was trying to explain as best as I could why it had to happen.  Not really believing my own explanations.

Perhaps I should have kept my appointment with the plastic surgeon, but ended up in the ER with an anxiety attack instead.  Perhaps she would have discussed the benefit of a single mastectomy versus a double.  Perhaps now I'd be discussing reconstructive surgery and not scar revision instead, but, then again, maybe it would not have made a difference.

I went into the hospital for same day surgery.  I woke up shortly after surgery with four drains dangling down, two on each side.  I hadn't expected that. Was a small detail the surgeon forgot to mention to me.

I knew the purpose of  the double mastectomy was to remove both my breasts and any lymph nodes that were necessary. I had even seen pictures of a woman after a double mastectomy.   I just hadn't seen ME after a double mastectomy.

The following day when my dressing was changed, I was astonished by what my chest looked like.  All those staples.  Skin protruding from below my armpits, where I hadn't expected it.  And no breasts.  Only an indication of where they had once been.  I kept my shock to myself.

Before I left the hospital, the really wonderful male nurse made a binder that fit around my dressing and which allowed us to pin up the drains.  Made it much easier for me to go to the bathroom, as it kept the drains from dangling between my legs.  Made it easier to sleep, too.

I was pleased with myself.  Several trips to the bathroom in the middle of the night.  I was walking fine.  Then a bit before 7 AM, a shift occurred.  I felt pain above the dressing.  I laid back down in bed.  I needed my husband to hold my hand as I walked to the bathroom.

I dreamt that I was asleep in my bed.  I awakened to my husband speaking to me.  Much to my surprise I was lying on the living room floor.  He helped me up and led me to the side of my bed.  I called the surgeon's office.  I  was told that the surgeon wasn't there, but that his colleague was.  We were given a choice.  Come to the office or go to the ER.

I wanted to call an ambulance.  My husband wanted to drive me all the way to either the professional building or the ER.  I saw his point, but I was apprehensive.  He got our housemate.  She helped me get into a chair on the porchlift, while he drove the car onto the sidewalk.  I got safely into the car, and we were on our way to the surgeon's office.

I spent the better part of the day lying on a gurney in an ER examination room.  I either was being wheeled to and from tests or lying there alone.  At least the tests showed that I hadn't had a pulmonary embolism as the ER doctor suspected.  Based upon what the nurse would tell me, the ER doctor and the surgeons were discussing me.  As I suspected,.I  needed a second surgery.  But first I had to be given the first of three transfusions I'd receive over three days, as my hemoglobin was low.

The anesthesiologist, who had been present for the double mastectomy, was yet again standing over me as I lied on a gurney.  He sang "5'2", eyes of blue, has anybody seen my gal?"  I told him that my eyes were brown.  Then I sang along with him.  He knew more of the song than me, so I gave up and listened.  I told the nurses that since he was the one putting me out that I needed to be nice to him.

"I don't want to see you again," the anesthesiologist said, as I woke up in recovery.  I told him the feeling was mutual, except perhaps when I returned for reconstructive surgery.  I think he was amenable to that.

Months from now, after my chest wall has healed from radiation, I will have scar revision surgery.  Given what the plastic surgeon told me about reconstructive surgery, I have decided that it is better to have no breasts than to go through all of that rigmarole.

Even though this is my choice, I wonder if I will ever get used to having no breasts.  Although  my  breasts didn't define me as a woman, they still were a, pardon the pun, large part of me.  My breasts connected me to women who came before me.   And now my daughter have breasts.

I still feel complete, and yet I still feel bereft of what cancer has robbed from me.  I would have preferred breast reduction.  Instead I am left with breast redaction.  Perhaps some day I will be at peace with all of this, but right now I have to adapt to a life without breasts.

Cancelled on Account of Drool

As days and weeks go by, I discover that this becomes a humbling experience for me.  Chemo is arduous, but at times a meditative experience. I may have it easier than some, but certainly harder than others.  At first I am thinking, if you have Stage One or Stage Two, don't even talk to me about it.  I feel an odd sense of self righteousness about it.   I yell at Cancer Center of America commercials. Stage Two breast cancer?  Don't whine about it, damn it.  But then as I email and tweet and post on Facebook about cancer and chemo, I have people come up to me.  Either they tweet at me or they direct message me.  Husbands confess to me that their wives have breast cancer.  A long distance friend who I don't email often tells me his wife has a cancer blog and is going through all of this a second time.  She is writing a blog which I have only visited once.  I need to email him again, I keep telling myself.  I feel like a lousy bum.  I get mad at people who do not keep up with me as I would like.  I really ought to practice what I kvetch about. Kvetch being the more legitimate term because I grouse in private more often than not as opposed to being a better friend.  I like to think I am a good listener and a good friend but having cancer has made me realize how often I have gone through life as a self centered jerk.  I am no different from many others who make things all about themselves.

Shortly after my fourth round of chemo, I am on Twitter reading and reacting to the unsettling news of Robin Williams' suicide. I end up throwing up four times.  Just the day before I had been in such a state that I am still ashamed.  I also have a tiny bit of understanding of how he must have felt. Emphasis on tiny bit since I would not presume any greater understanding than that.  Just a general sense, really, as I have had suicidal ideation since I was eleven and three quarters.  And, as I grow older the feelings translate to shame and a sense of uselessness.  I feel as if now as for years now I have let down friends and family.  I am admittedly my worst critic. I hate feeling as if I have to rely on other people especially my husband.  When I feel well enough to go grocery shopping, I am just about thrilled to pieces.

I place a brave face on what I am going through.  When I say that Stage Four people are my new heroes, I am not exaggerating.  I am also not exaggerating when I say how this is far more arduous than it is scary.  It's not the cancer that has brought me to my knees. It's the chemotherapy.  It's the constant fear, "please don''t let me throw up again." It's the fear that this will happen to someone I love or otherwise care about and there's not going to be a damned thing I can do about it.  All I can ask of any of you is please take care of yourself.  If, worse case scenario, you are diagnosed with cancer, please catch it soon enough.  I beg of you, be the biggest hypochondriac if you have to be.  Don't make the same mistake I did and assume this will happen to someone else.  Don't do like my BFF Sue did and ignore all symptoms until it is much too late.  Now, granted, in my defense, my form of breast cancer is very aggressive.  I take a small consolation that I only had Stage Three.  I consider it a small miracle that I did not end up with Stage Four.  I marvel at that daily.  I will always feel grateful that it wasn't worse.

As I engage with people in the waiting room, I start to realize how, yes, lucky I really am.  I am not 78 and struggling with cancer of lung fluid.  I am not undergoing treatment for breast cancer for the second time in twenty-five years.  If I am lucky I will not have to endure this ever again.  I email back a terse but I hope humorous reply to a friend of ours who tells me how courageous I am being.  I worry now that my two word response was a little too terse.  "Beats dying," I tell him.  That is truly my attitude, yet I do wish now I had been tactful about it.  Perhaps I will find a way to email him.

Cancer, I am convinced, has brought out the best and the worst in me.  One moment I am profoundly grateful and the next moment I am profoundly angry and resentful.  I am relieved to find out that the steroids I have to take to prevent side effects, surprise, surprise, produces side effects.  I am by nature an anxious person, and this drug heightens that.  Gives me an excuse for behaving badly, I suppose, but only to a certain extent.  Also explains why this I described this as PMS on steroids.  I don't think I ever felt so out of control in my entire life.  Now, granted, I had times when I felt homicidal during menopause, but this makes menopause feel like a picnic.  Or perhaps I am simply more aware.

Round five causes me to enter a kind of altered state.  I am aware of how strange I am being, yet I cannot stop it.  I find out later this is the result of an anti-nausea drug, compazine.  I am experiencing nausea, vomiting, diarrhea and tremendous anxiety.  I am walking funny.  I have my hands in front of me, as if I could catch myself.  My right foot raises as if I am going to squash a bug.  Makes me think of John Cleese's silly walks, except I am not trying to be funny.

Both chemo nurses look alarmed.  "You don't look right," the one nurse said.  It was clear that there  was something wrong.  I couldn't stop drooling. They were afraid I was going to fall.  I couldn't blame them.  The chemo nurse told me all my blood work was good, but because of what else was going on with me they had to cancel round six of chemo.  I was instructed to return the following week.  Round six of chemo never happens.  The oncologist decides it's better to just move on to herceptin, the drug I will now be on for a year.

I am out of control.  I cannot stop moving.  At bedtime I move from chair to bed and back again.  I sleep in my chair, as I am unable to figure out how to actually get into bed.  I start to, but the positioning doesn't seem right.  This goes on for days until I fall once or twice in the middle of the night.  A friend of my sister in-law's has moved in with us.  She catches me.  I find out later that she was so worried about me that she is also bereft of sleep.

We move my bed to a corner of the living room.  I wake up realizing I have defecated myself.   Housemate, understandably irritable, helps me clean myself.  She explains that this happened because I really hadn't slept in three nights.  That had been the deepest sleep I had had in quite some time.

I am sitting in a wheelchair in the surgeon's  waiting room.  I feel compelled to move from wheelchair to chair and back again.  My husband keeps asking me where  I am going.  I repeat the pattern in the surgeon's exam room, too.  The surgeon and my husband are talking to one another as if it's Old Home Week. The  surgeon is South Side Irish and my husband might have some southsiders in his extended family.  Somewhere in there we discuss my double mastectomy.

The following day I am supposed to meet with the plastic surgeon.  Instead I insist on going to the ER.  Housemate comes with us.  I have a wheelchair again, but I insist on pushing it around.

When I finally ushered into the  ER, I, much to my housemate's chagrin, decide to lie on the floor.  She says I slept for about twenty minutes.  That's probably the longest I was still in days.  I am placed in a gurney.  I am begging to be hospitalized.  I am given benadryl and  then an anti-anxiety drug.  When it's clear that the drugs have the hoped for effect, they talk about sending me home.  The nurse spends extra time with me to convince me that this will really be OK.  She holds one hand.  My husband holds the other.   I feel loved and secure.  I go home.

As days go by, I am starting to be convinced I will be OK.   The anti-anxiety drug helps me sleep.  I am still not particularly useful, but at least I know I am ready for the double mastectomy.

Chemo Sabe

The surgeon said to me, "see you in eighteen weeks," as he finished up checking his handiwork.  He had placed inside me a portacath through which I was to receive all four of my chemo drugs every three weeks and rehydration as needed.

At first it hurt to have this device just under my skin roughly below my right shoulder. I have gotten used to it.  It's like having a quarter sized lump.  What still amazes me about that surgery is that one moment I was hearing  the anesthesiologist nurse say, "I am going to give you something," and the next moment I was waking up.  I wondered afterwards, "who was that masked man," as I had no awareness that anything had even happened.   I told him as much during the office visit.  I am amazed at not only his skill but that of the entire team that was part of that surgical team.  I had undergone two c sections, and this was by far the easiest operation I had undergone.

The first time I had chemo, I had to watch an outdated video produced by Sloan-Kettering featuring cancer patients asking questions about chemotherapy. It was a half hour of a combination of eye rolling and notetaking for me. The video is so badly produced,  I half expect to watch someone stand in front of the camera stating, "Hi.  I am Troy McClure.  You may remember me from  such videos as, 'So You Think You Have Cancer.' "

There  were things I had forgotten, in my initial shock, to ask the oncologist.  I felt myself wincing throughout the viewing.  Frankly I felt that this type of video is needed, but I also felt that the presentation needed to be fresher.  I also hope that someone donates to the cancer center so that they can present this on more up to date equipment as well.  Either that or they need to hire some high school kid, so that I can at least feel nostalgic.  Take the edge off of having to receive chemo in the first place.

The first round of chemo is an excruciatingly long seven hour day.  For reasons still beyond my comprehension it takes longer for the drug delivery.  After that it is roughly half the time.  At least that is how it is for me.  The drugs used for chemo is just about as unique as there is for types of cancer as someone's fingerprints.

"What are you in for," I asked the man in the baseball cap who ended up in the chair beside me.  "Stage 3B lung cancer," he explains.  Suddenly my cancer didn't seem as difficult.  I saw how he had his oxygen tank, too.  At least I didn't have to roll around something like that, I thought to myself.  I am learning to be increasingly grateful for small favors.

While waiting to be called to a chemo chair  for round two, I picked up "Lilly Oncology On Canvas:  Expressions of a Cancer Journey."  It's artwork done by cancer patients, family, friends and healthcare professionals.  Commentary often accompany the painting and drawings.  Some of the artwork is depressing because the stories are not always happy endings.

As I leafed through the book, I thought about my mother in-law, Margaret,  who passed away July 2013.  She was an artist, and I cannot help but feel I was drawn to this book because of her.  I smile. I cry.  I feel triumph.  I feel fear and uncertainty.  How will things turn out for me, I wonder.  I cannot think about it.

The 78 year old man is so hard  of hearing that I can hear  his TV from clear across the room.  While waiting for my chemo chair, I talked to him and his wife.  He has cancer of the fluid of the lungs.  I cannot even imagine what it's like to be dealing with that kind of cancer and at his age.

The chemo nurse explains I am not yet hooked up because they fixing the CBC machine.  This delay is like being told the train is going slowly because they are working on the track.  I know this means it'll be a long day.

The old man's TV continues to be very loud. Sounds like he is now watching a war movie. My chemo neighbor, a cheerful elderly woman who is battling the same cancer she had twenty-five years ago also has her TV on loud.  She is pleasant enough.  I just  wish she didn't like shows  like The Talk.  I am really beginning to hate Sharon Osborne.

I end up taking my mind off of the loud TVs surrounding me by using my old fashioned technology of notebook and pen.  I start to write a poem about cancer.  Cancer Is An Unpretty Picture

Above the cancer center are doctors' offices.  I hear a baby crying.  Poor kid was probably given a shot.  Then down the hall I hear them sing Happy Birthday. Very chaotic.

I am waiting for a chair so I can be rehydrated.  The woman sitting across from me is both inspiring and annoying.  She is speaking to me about God in a way that makes me uncomfortable.  I don't have the heart to tell her I am an atheist. Nor do I wish to challenge her.  This is her second go round with cancer.  The first time was years earlier when she was a first grade teacher.  I am amazed when she told me she never missed a day of school.  How did she do chemo and not miss a day of work, and, how did she manage not to feel lousy?  Her explanation is that God took care of her, and continues to take care of her.

What about those who don't make it, I want to ask her.  What about people who lose their lives other ways?  I hold my tongue.  I learn later about those who have faith from those who approach me,  but right then I am inclined to interpret this woman all entirely wrong.  Why would God take care of her and not other people, I wonder angrily to myself.  That is what made me an atheist to begin with.

The weekend before round three, a friend insisted on visiting.  I  wasn't sure how  that was going to work.  He is an old fashioned traveling salesman. Drove in all the way from the Cleveland.  He took me to the Chicago Botanic Garden where there are a lot of benches.  Was a beautiful day.  Not too hot for a July day.

We are sitting over by the pond.  I joke with him that I ought to pretend to be struggling not to fall in.  He takes a picture of me pretending to flail.  That is still my current avatar.  Little did I know that was going to be the highlight of my summer.

While sitting through the third round of chemo, I write, "objects in mirror look larger than they appear."  What I mean is that the set up for chemo always takes longer than anticipated.  Longer for blood tests to come back.  Even when it seems there aren't that many people, the chemo nurses have a lot to do.  They mean to do things in a timely manner, but they have calls to make.  Paperwork to process.  IVs beep for various reasons.

The chemo nurses do the best they can to make people comfortable.  The furniture is old.  They don't have headphones for those who prefer watching TV. The best they offer are heated blankets and pillows.  Sometimes it seems I actually nap.  Before I know it, I am halfway  through a chemo round.

The chemo nurses have over fifty years of experience between them.  They sometimes need to hear back from the oncologist about various things.  Sometimes they have conversations with the patients.  Can be very enjoyable to overhear.  About food.  Old neighborhoods.  Old restaurants.  Cookies.

Shortly after round  three I had to return for rehydration.  Between diarrhea and vomiting, it was necessary.  As I wait for the chemo nurses to be ready for me, I speak to a woman who was/is Stage One.  She is waiting to be called into the lab for blood work.  I tell her I am here for rehydration.  I tell her that I  was Stage 3 and grateful that I am ONLY Stage 3 given the aggressive nature of my breast cancer.

When her name is called, she gets up, and much to my surprise, she kisses my hand and says, "God bless you." Is it out of  an acknowledgement that my journey is harder or out of gratitude or what?  Doesn't matter.  I am grateful to this woman for her gesture.   It's moments like that that not only make chemo and rehydration bearable, but remind me of the support I have received from total strangers.  Not just cancer survivors acknowledging each other's journeys, but people on Facebook and Twitter who I will never meet in real life.

So many people have offered thoughts and prayers.  Even as I struggle with fear and anxiety and anger, these moments of pure spirituality remind me of what really matters and that is love for one another.  To be clear, I am uncertain of the efficacy of prayer, but I greatly appreciate the intent.  And that is why I have tweeted repeatedly all prayers accepted.  All prayers.  All hugs. All thoughts.  Who am I to say what is effective and what is not?  I am grateful for all of this because I had no idea I would receive such an outpouring.

Early on in this process, I was talking on Twitter to an educator and cancer survivor, William Chamberlain.  He came up with the phrase, "spiritual clown car."  So many people have ridden shotgun on my journey.  When people are just with you in spirit, everyone can ride shotgun.  You have given me strength that I don't know if otherwise would have had.  I keep on being amazed how resilient I have been.  For those of you who have cheered me on, offered prayers, thoughts and hugs, I thank you.  You've all been part of my journey.

Tortoise Haiku

Tortoise stands in her

Garden.  Unable to get

Out of her salad.  

Exit. Stage Three.

I kept staring at my left breast with disbelief.  No way could there be anything wrong with it.  I kept rationalizing what I was observing.  Telling myself, you are very top heavy.  Breasts are not going to look symmetrical.  No, it's not thicker than the other.  That's some optical illusion.  Besides, I reasoned,  your best friend and your mother died of cancer within six months of each other, as if that were some magical Get Out of Jail Free card.

When I went in for a mammogram, the technician wasn't even  certain my left breast would fit the machine.  She left the room to consult with her supervisor. She returned and she immediately apologized for having to hurt me. She didn't.

The ultrasound technician returned with the radiologist.  They were perplexed by what they saw.  Fluid.  Looked like a cyst.  I felt smug.  Not cancer.  A cyst.  Ha! I  was sure the aspirated cyst would show nothing but pus.  All the worrywarts including my primary care physician could go jump.  The nurse said 75% of these cysts turned up benign.  That meant 25%  weren't benign.  I began to wonder, what if this cyst were cancerous.  Nah.  I was going to be one of the 75%.

The doctor remarked to the ultrasound technician that the fluid did not look right.  I tried to ask her what she meant, but maybe she didn't hear me. Why didn't it look more like pus, I wondered.

"How am I supposed to feel," I shouted into my cellphone at my primary care physician as  I navigated traffic on the way to a second biopsy.  I had spent that weekend in a rage.  Atypical cells.  Happy Mother's Day to me.  Bitter did not begin to cover it.

The doctor spoke to me as she did the second biopsy. I asked  her where she was from.  We chatted amiably as she injected needles  into me to take more samples.  Could have been a conversation over sandwiches at a nearby restaurant.

The news or, rather, verdict, came back quickly.  Grade three invasive ductal carcinoma.  Still sounds like an old fashioned dance to me.  Something from the 40s.   Men and women dancing together on a ballroom floor while a woman singer backed by a seven piece orchestra cheerily  sings "Doing the carcinoma.  Dah, dah, dah, dah, dah, dah, dah, dah."

Took a while for me to realize that grade three was serious in and of itself, even after I started telling people about it.  Then I looked it up.  That's when I understood that, at the very least, the cancer had spread throughout my left breast.

"I won't hold it against you," I told the surgeon, when I saw he was wearing a White Sox pin. My mock disdain was as much about him being Southside Irish as it was about him being a Sox fan.  Afterall, I was married to Northside Irish.  I had to display some loyalty.

He good naturedly oversaw the  resident who did the skin punch biopsy and then sewed up the small hole she had left in my breast.  Made me feel good to know I was at a teaching hospital, and I liked the surgeon's easy manner with his student.  `As I drove away from the hospital, I thought, if I were to need surgery, then I would be in good hands.

"You have inflammatory breast cancer," the oncologist told me.  She went on to explain to me that this form of breast cancer was very aggressive. There is no Stage One.  There is no Stage Two.  My breast cancer starts at Stage Three. She told me that I'd either have six rounds of chemo once every three weeks or chemo once every two weeks depending on what the MRI, bone scan, and CT scan showed.

I left her office feeling numb.  I was almost certain scans would show that the cancer had metastasized.  Stage four, she had explained, was treatable like a chronic illness.  Stage three, however, was curable.  Made me wonder if this was something I'd have to live with for the rest of my life, or  if I'd be able to be declared cancer free after five years.   Five years was going to be long enough to wait and wonder.  I didn't want to think about worse.

"Your breasts won't fit," the MRI technician explained to me.  I didn't need her to tell me that.  I could see it for myself.  She went to call the oncologist to see what she wanted me to do.  I got dressed and sat in the waiting area.  I was 44I to begin with, and cancer breast, as I had dubbed it, had gotten that much larger. On one hand I was relieved because this was a closed machine, and I am claustrophobic.  On the other hand it felt like insult to injury.  After a while the technician told me to just go home.

I sat in my car and cried.  The purpose of the MRI was to see if the cancer had spread to my other breast.  The technician was a nice woman, but I felt humiliated all the same.  Then a pleasantly dark thought entered my mind.  I smiled.  "Break out the rusty saw."   Gonna have a mastectomy anyway so why not?  I laughed and drove home.

I paced about on our front porch while trying to digest what the oncologist was telling me. She told me that aside from a tiny spot in the middle of my spine and a tiny spot on my right lung, she considered me still Stage Three.  I could hardly believe it.  I felt like I was going to collapse on the ground out of relief and gratitude.  Main thing I knew was that I was gonna live.

I went grocery shopping.  I ate free samples.  I felt like I was on top of the world. Who knew one would feel grateful having Stage Three cancer?  But I did.  Not just treatable but survivable.  I had an aggressive form of breast cancer that began at Stage Three and thankfully ended at Stage Three.  While I wished  I didn't have cancer in the first place, I was grateful all the same.    I knew it was only a matter of time before my cancer would make like Snagglepuss and exit. Neither to the right nor to the left but... Exit.  Stage Three.

Cancer Is An Unpretty Picture

Cancer is an unpretty picture
Painted by an indifferent artist
Placing me in an uneven frame
Badly wanting to see me upended
Haughtily mocking all decorum
Bony finger jabs me in the breastbone
A tirade through thin lips cuts me to the quick.

I square my shoulders and face my enemy.
Hey, punk, you want a piece of me? Do you?
I have fought more formidable foes than you.
I have repeatedly risen from ashes.
You think I will not rise yet again?
I have rolled in larger dung heaps than you.
I will arise and glow and you will perish.
Coward that it is, cancer scurries away.

Cancer Haiku, The Third

My body is a
foreign object forsaken
by my muddied mind

Cancer Haiku, The Second

Chemicals bombard
besiege and bamboozle my
poor body's beachheads 

Cancer Haiku

Note:  I composed this on Twitter earlier today.
I decided it needed a more permanent home.
Written as a reflection upon my first round of chemo.

Cancer comes along.
Indifferently thuggish
a relentless brute.

Dancing Backwards And In Heels: Parenting A Special Needs Child

"And then there's Adult Protective Services," the school nurse said.  "Crazy, huh?"

Crazy, huh. I restrained myself from asking her, "Do you realize what you are saying?"   I don't think that, unlike previous remarks, this was calculated.  I think she was acknowledging that she was just one overzealous mandated reporter in a system that rewards such behavior at the expense of parents like me.   She also mentioned that other school nurses would be worse than her.  If they are, then those of us with special needs kids are in deep trouble.

Parenting is never easy.  There's always things that come up that one would never expect in a million years.  You love your children, but sometimes you want to disavow any knowledge of them.  "That kid?  Never saw her before."  

Parenting a special needs kid, however, is, to borrow a pro feminist slogan, "dancing backwards and in heels.".  A parent with a special needs kid is being scrutinized in a way that a parent of a "normal" child can neither begin to imagine nor be willing to put up with.

From the moment Kid O entered the world, I've been subjected to the worst kind of scrutiny.  Because she was a preemie who weighed only 3 lbs, 10 oz, her birth was reported to the Department of Public Health.  I was terrified when a nurse showed  up.  She was nice about it, but I understood the implication. Underweight premature babies were assumed to be given birth to by mothers who were poor, ignorant, and who hadn't sought out prenatal care, and, in a word: neglectful. 

One day, as I was getting ready to take Kid O on the train to see my folks, two public health nurses, a man and a woman, practically barged through my door. The man would not take "no" for an answer.  I uttered utter a mild protest, stating that the regular public health nurse had told me that she would be the only one coming around.  He told me that that nurse was on vacation.  Even though I knew I had rights, I was afraid to say "no."    Much to my shame and horror, he insisted I hand  over Kid O for a surprise inspection. I watched, speechless, as he took her over to her bassinet and undid her diaper.  It was only after that that I had the wherewithal to call the Department of Public Health and canceled subsequent visits. 

My neighbor, who had had a near perfect homebirth and a nice, large, full term baby,  brought by literature on pre-eclampsia because she felt I needed to  take responsibility for Kid O's prematurity.  She was smug in her knowledge that her expensive birthing class had produced nothing but perfect births and perfect babies.  She was certain she was a far superior mother, so imagine her surprise when she couldn't console Kid O one morning  Months later she apologized to me because one couple in her birthing class had a child with CP, and were being forced out of their condo on account of the baby's screaming.  

Now, granted, it's damned uncomfortable listening to someone whose only means of communicating distress is to go all primal. Imagine how it impacts the parents of such a being. There are times when I still get so rattled that I feel like a shooting gallery duck.  

Babies can be fussy.  They are wet.  They cry.  They are tired. They cry.  They are hungry. They cry. Ordinarily if you put a baby in their carseat, they will fall asleep.  Same thing if you put them in their stroller.

Kid O had such a disorganized nervous system that these tried and true methods did just the opposite.  Put her in her carseat and she would cry hysterically  to the point of throwing up all over herself.  That didn't stop until she was around four. 

People assume that if someone requires help with toileting or feeding or dressing that they are physically weak.  Kid O is not without her ways of resisting something she does not want.  Just because she doesn't have a lot of muscle mass, doesn't mean that being kicked by her wouldn't hurt.  The girl packs a mean mule kick.  

Some mornings it takes two of us to get her into her wheelchair.  One to bend her legs and keep her from extending her hips, and the other to strap her in. There have been times when I have had to deal with Kid O turning herself into a human board.  Eventually I would prevail, but not without an average of twenty minutes of cajoling and heavy lifting, which would leave me gasping for air.  

To a casual observer, it probably looks like Kid O is screaming because her mother is abusing her.  .Instead, I am being abused by people who, over the years, have jumped to painfully wrong conclusions including an allegation of sexual abuse

I don't begrudge women their perfect children.  I just always wanted the same thing.  And, barring that, at least not to be thought of as if I were some criminal. Unfortunately, my circumstances are not that unusual.  I have read of instances of special needs children removed from their parents simply because these people are flawed human beings.  For some reason people think they can raise Kid O better than my husband and I can.  I had one woman start a whisper campaign against us.  Why?  Because on the morning she came over, we were feeding our daughters *gasp* toast and jelly and not a full breakfast.  And so it goes.

People have no idea how difficult it can be to guide a special needs child to adulthood.  They have no idea how incredibly stressful it can be.  They contact DCFS without considering how unnecessary and how hurtful it can be.  

The last time DCFS was called out, we hired an attorney to join us at a meeting at Kid O's school.  My husband made a point of mentioning my high blood pressure. The teaching staff received his meta message loud and clear, "If anything happens to my wife..." I was grateful for his protectiveness.  I could  see Kid O's teaching team shift from being on the offense to realizing what harm they could cause.  Do people not consider how devastated Kid O would be if she were removed from the two people who love her and understand her better than anyone in the world?  

When I am not being considered a criminal, I am being placed on a pedestal. When I fall from that pedestal, people become incredibly disillusioned with me. Neither place is comfortable.  I have never asked for people to worship me. Respect and compassion would go a long way to acknowledging me and other parents of special needs children.    We are neither sinners nor saints.  We are just people who happen to face enormous challenges every day.  And, hopefully, with a tremendous amount of grace.  

My Music Conveyed You To Me

Note:  A dahabeeyah is a kind of barge like boat on the Nile

 I wrote this poem in early 1993 to my husband when we first fell in love.

My music conveyed you to me
a sympathetic symphony
murmuring my heart's rhythm:
Love you I, you love I, I love you.
You are the still water running deep
through me. Effortlessly I glide along
on my dahabeeyah content to lazily
uncover you:  my life source.

I Pledge Allegiance To You, Chicago

I pledge allegiance to you, Chicago.
I pledge allegiance to your four starred flag
To your slanted streets and movable bridges.
To your buildings scraping the sky by and by.
To your park granting a water fountain space.

I pledge allegiance to you, Chicago,

To your wind swept politicians, newsmen

Rooted in subterranean taverns, 

Colorful mayors preserving disorder 

City that works for those willing to work it.

I  pledge allegiance to you, Chicago,

To your screeching el trains that loop around

To your crazy lake and backwards river.

A constant stream of ethnicities.

A tangle of flags, churches and eateries.

I pledge allegiance to you, Chicago.

This broad shouldered woman loves you.

Many faceted rough cut diamond

You've got combustible character.

My fiery city, second to none.  

Momma Don't Take My Grit Away

My grit is my scarlet lettered badge of honor.
It is the cross I scrape across the pavement
It is a boulder sized shoulder chip.
My grit is what I rub in your face when
You ignore my loud suffering.
My grit is my oh so pretty brand..
She has become incidental.
My grit has become soul powered,
Sending out puny waves of rage.

Momma Don't Take My Grit Away.
Momma Don't Take My Grit Away.
Momma Don't Take My Grit Away
From Me---ee--ee.

My grit grows exponentially with each
Retelling of things that befell me.
Glorious feats of fraudulent motherhood.
My grit lays out a magnificent feast
of falsehoods,elaborate lies I slurp up.
If it weren't for this self betrayal,
I would collapse in anguish
My grit isolates and insulates.
My grit nails me to a wall..  
Allowing me to rejuvenate.
So I can survive to equivocate
yet another day.