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.