Tuesday, February 10, 2015

The Good Dad

"Here comes Uncle Mistletoe, " my dad  would cheerfully announce.  Although that was before my time, it was part of a repertoire of voices he did for me.  Talking Tree.  Elmer Fudd.  Bugs Bunny.  Daffy Duck.  He would also read me the Sunday funnies.  As I got older that shifted to naming 100 knights and their 100 horses, and with that, my dad introduced me to word play and puns.  He also gave me a love of shaggy dog stories.

When I was very little, my mom went back to work.  My dad would drop me off at my grandparents for the morning.  He would return around noon to drop me off at nursery school.  Sometimes he would bring tiny cupcakes with various plastic sticks in them, depending on the holiday. Shamrocks. Halloween decorations.   I remember my eyes growing wide as I stood in front of the coffee table, looking at those beautiful cupcakes. He would always tell me they were all for me.

"Give me some skin," he'd say to me,  as we crawled along in traffic on the way to one of his accounting clients.  Since I took things literally,  I would open up my palm, pretend to pinch a piece of skin and hand it to him.  Years later I realized he really was asking me to give him five.  I suppose that he never had the heart to tell me how badly I had misunderstood him.  

Sometimes he'd take me along with him to the eye care clinic where he was the part-time accountant.  I'd get to talk to the eye doctors, my dad's boss and  the bookkeeper.  Joining them for lunch always made me feel so grown up.

Somewhere between Iowa City and the Chicago suburbs, we sat in a restaurant off of I-80.  My dad apologized to me for not being around much while I was growing up. It was not his fault. He was working during the day and going to school at night, so he could change careers.  Even so it was gracious of him to tell me that.  He must have given some thought to how lonely I was. 

My dad and I had a kind of quiet companionship.  He would unwind from teaching by watching late night TV.  Since my bed was right above where he watched TV, I would adopt an "if you can't beat him, join him" attitude.  We would watch Johnny Carson.  Tom Snyder.  Dick Cavett.  Whatever talk show was on. 

Over the years my dad and I shared jokes.  We would give our best deadpan delivery, and wait for my mother to get the joke.  After a few minutes she would finally say with mock annoyance, "you two pixies." 

Two days after my dad died, we had a blizzard.  As soon as the memorial service was over, the California grandchildren went off to play in the snow. I can't help but think my fellow pixie just couldn't help himself.   

I wonder if my dear ol' Daddio is floating around somewhere.  I'd like to think that whenever we get hit by a  blizzard that he roars with laughter. I'd like to think that he saved me when the brake lines went out on our '89 Crown Vic.  I'd like to think he was riding shotgun with me, as I went through cancer treatment.  

One of my favorite memories was watching The Carol Burnett Show with my dad.  This sketch of commercials left us rolling on the floor particularly the part where Harvey Korman asks her, "How about calling my Aunt Bertha in Chicago?"  (starting at about 2:11)  Although I never had the pleasure of meeting him, Harvey and my dad were second cousins.  His Aunt Bertha was my grandma's first cousin.  By the time that sketch aired, she had been dead for at least five years. That would have been some long distance call.  We were undoubtedly the only two viewers who enjoyed the unintentional irony.  

As long as I still have memories of moments like these, my fellow pixie will always remain in my heart.  

Tuesday, January 27, 2015

The Good Husband

He is handsome in his Army uniform.  The two of them together look as if they had just stepped out of a movie set.  My mother doesn't think she is beautiful, but she is.  Her hair is perfectly coiffed and her cream colored suit is impeccable. They are posed with heads next to each other.  So much in love on their wedding day, 4 November 1945.

My father was madly in love with my mother.  He wrote her many love letters while he was overseas.  They are starting to crumble now, but they are still in a box.

"I have a pearl handled revolver," my mom used to tease.  My dad had a female boss at his part-time accounting job, and he had a female employee, too.  They would sometimes go to Chinatown, Greektown or Little Italy for lunch.  My mom knew she didn't have to worry.  He was very frank about the friendship he had with his boss.  She knew she could confide in him about what was going on in her family. My dad was, as my mother would describe him, "a quiet man."  He would listen and not comment.

My father always listened to my mother.  One of his brothers  insinuated that he was henpecked, but that was never my mother's intent.   At the urging of my mother, my dad went back to college.  Got his accounting degree.  Later on he went on for a Master's.  He got a degree in Data Processing, and changed careers from being the assistant general manager of a grocery store to  professor of Data Processing and Accounting at one of the Chicago City Colleges..  

Despite financial struggles at the beginning of their marriage, my mom says my dad was always generous.  Never once asked her to justify how much something cost.  She, of course, never was that extravagant. They had both gone through The Depression, and it made a lasting impression on them.

My dad tried to go into business more than once.  One business was alarm systems.  We had one installed in our home.  Once when it accidentally got set off, we had a scene that could have been part of a sitcom.  The unit was quietly removed.  Unlike the sitcoms, however, my mom made him feel like an idiot for his failures.  

In his later years, my dad would always say about my mom, "we're lucky to have her."  Even as he retreated into dementia, he appreciated my mother.  Even as he expressed his resentment towards her, he knew deep down that she was doing her best to take care of him. More than that, she kept her promise to him to keep him out of a nursing home.  

Shortly after he died, my mom told me he sang to her again just like he had  when they were courting.  I imagine one of the songs was Twenty-Four Hours A Day

Sometimes love can conquer dementia and aphasia for a final expression of devotion.  Even at the very end, he was the good husband.  

Sunday, January 4, 2015

The Good Son

When my dad's identical twin brothers were born eleven days short of his first birthday, his mother almost forgot about him.  My dad used to tell a story about how he was rocking the cradle when one of a number of immigrant cousins came in and said in Yiddish, "such troubles for one so young."  There is a painting that is a reproduction of an old photo of my dad in short pants and Buster Browns standing between two chubby boys.  My dad is casting a furtive glance.  He grew up being outnumbered and outmaneuvered  by his younger brothers, who were favored by their mother.

My dad grew up to be The Good Son.  After his brothers moved away, he stayed and took care of his mom and dad.  When his dad was in the nursing home, he visited him every weekend. And when his mother would call up every Friday afternoon and say, in her thick Yiddishe accent, "I'm lonely," he never once refused her request to spend weekends with us.

Our weekends revolved around getting in the car on Friday afternoons and driving from our Southeast side home, up Jeffrey Boulevard to Lake Shore Drive and taking that all the way to where it ended on the far north side, and then making the return trip on Sunday afternoons.  That went on four, five years, weekend after weekend after weekend, culminating in sitting on furniture covered in plastic and watching Bonanza, the Lawrence Welk Show and Mr Ed before finally returning home.

When we moved to the south suburbs, my dad decided it was time for my grandma to move closer to his younger brother in Southern California.  We flew with her out to LA  December 1969.  My uncle came to the my mother's brother's house, and that was the last time I saw my grandma.  I don't think I even said goodbye.

"Uncle George called," I said to my dad as he and my mom walked in the kitchen door.  "Is he in town," my dad asked.  "No," I responded. "Grandma died."

"What is she doing here," he asked angrily, referring to my best friend, Sherry O'Connor, who had just come off the bus with me just a few minutes earlier. "You'd better go home," I said to her.

A year later I was walking through O'Hare with three men, two of whom were trading "You're so fat," insults.  "Who makes your clothes, Omar the Tentmaker?"  When my Uncle Harold, who was wearing Bermuda shorts and a t shirt, ended up on one side of a pillar and the rest of us on the other, my Uncle George leaned in close to my dad and said,  "He embarrasses me."   Both of my uncles, whom I rarely saw, had flown in for my grandma's stone dedication, which traditionally  occurs around the first yahrzeit of a person's death.

Summer of '72, my dad purchased an olive green Dodge Polara.  He chose olive green because my grandfather has been a lifelong employee of Illinois Bell, and that had been the color of their service trucks.  As he started to place plastic covers on the car seats, he stopped and asked himself what he was doing. The Dodge was the first of his cars not to have plastic seat covers.  

Shortly after my grandpa died in October '68, the Tribune published a nursing home expose.  My dad was consumed with self-doubt.  He asked me if he had done the right thing.  Given how stubborn his mother had been about not leaving their second floor walk up apartment, I don't know what could have done differently.  I don't recall much about the nursing home except that while it wasn't a cheery place, it didn't depress me, either. Depressed me more to see my grandpa catheterized and urine flowing from a translucent tube into a bag and barely able to speak.

I don't remember what he sounded like or was like as a person, except that, based upon the arguments my dad used to have with his mother, I gather that "Pa" was a quiet man who was easily intimidated by his wife. My grandma would neither consent to  live in an elevator building, nor would she consent to move to California where Pa could enjoy his last days in warm sunshine.  Right before Saturday visits, my dad would stop at the same small stand and buy my grandpa a corned beef on rye with mustard, so at least my grandpa had these small pleasures.  

My mother told me that "Pa" was very talented with fixing things, probably an asset to him as an Illinois Bell lineman.  My mother also told me that he had hoped that my dad would become an engineer like my Uncle George, but my dad didn't have the aptitude for it.  I imagine that my dad's occupation of professor of data processing was probably beyond his father's comprehension  

A year after my father retired as a professor at one of the Chicago City Colleges, my dad, who all ready has his father's disability, Parkinson's, had a mild stroke.  He rapidly spiraled into dementia after that.  Life had played a cruel cosmic joke on him by giving him his father's illness, and his mother's base personality that, in later years, made him almost as unpleasant to be around as she had been.  

What I choose to remember is the man with a great, sometimes earthy, sense of humor, tremendous sense of duty, generosity and a great deal of compassion. What I choose to remember is a man who took care of his parents, despite the fact that he lived in the opposite end of the city.  What I choose to remember is a man who loved his mother despite the fact that she didn't much care for his wife. I choose to remember a man who grieved his mother's passing when no one else would.  

Some might think that my grandma didn't deserve her son's love.  I believe my dad had enough compassion to love her because he knew she had had a difficult life.  I think she knew, on some level, that he was a good son.  

Wednesday, December 31, 2014

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.  

Wednesday, November 5, 2014

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.

Tuesday, October 21, 2014

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.

Sunday, October 19, 2014

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.