Just heard spoken on The Ed Show: “Be wary of private interest masquerading as public virtue.”
So Many Questions …
A few years before my own breast cancer diagnosis in July 2009, I received the opportunity to meet another woman fighting for her life against the disease. Carol and I were in the same local YMCA yoga class, and I had been encouraged to introduce myself to her. But I had also been told that Carol’s most recent news was not hopeful, and that her oncologist had suggested yoga as a way to relieve some of her stress.
First opportunity I introduced myself to Carol. But I deliberately did not make an effort to call her later, or become friends with her at all. I remember distinctly that I was afraid. Not of Carol, a 30-something African-American married woman without children, but of her journey. Her husband was a truck driver, and so her co-workers had stepped up to help her in her battle. Carol was also an orphan who had found her mother only after her diagnosis prompted her to locate her maternal family. The same family, she would learn, that had passed along genetic breast cancer.
Her newly discovered sickly mother came to live with Carol after they met, which was of course, also after Carol’s diagnosis. When my opportunity came along to meet her, she was fighting off breast cancer, and caring for the ailing mother that had abandoned her as a child.
I thought long and hard about it, and decided not to attempt to make friends. My own mother died suddenly when I was 15 years old, and so I could empathize with her wish to bring her lost mother in to live with her. But I thought her mother selfish because she was not there to help her daughter survive, but to lean on her daughter for her own survival. The two of them alone in the house most of the time, I imagined a complicated, emotionally charged environment that I didn’t want to expose to my own sensitive emotions about mother/daughter relationships.
I also did not want to make friends with someone whose doctor had told her she would not make it, that the cancer would kill her. I didn’t even know Carol, except for what I had heard about her second-hand, and I decided that I didn’t want to get to know her. After all, I reasoned, she had plenty of help. Her co-workers were actively taking care of her – feeding her, staying over with her, and escorting her to medical appointments. I didn’t want to expose myself to the pain of losing another loved one. I might have come to a different conclusion had I thought she was help-less.
When I received my own diagnosis, and began my own survival journey, like Carol, I looked to my family, friends, and even my co-workers for help. If no more than to listen to my sad tales about surgery, chemotherapy, etc., etc., I needed everyone who was willing to hold my hand, and to hold me up during what continues to be a hard journey.
I was surprised by the responses my cries for help received. People I didn’t expect to do much more than pat my shoulder and wish me the best were amazingly helpful and caring. Friends that donated furniture so that I would be more comfortable, visited with personal gifts in hand, loaned and gave us money that kept us afloat while I missed work, mailed gifts long distance, listened patiently over the phone while I sobbed and felt justifyably sorry for myself – prayed for me. Family that took time out of their busy schedules, and funds out of already tight budgets to come and see about me in person.
Relationships are very much like row boats, two people to a boat. During good times, the boat you share with a friend moves smoothly down the river with no one necessarily paying attention to who is, or is not, rowing the boat. But if – after one of the two people becomes unable to do her or his share of the rowing – the boat stops mid-stream, than we know who was doing most of the work in that relationship.
I was also surprised by the many ”extended family” that were stunningly silent. No calls. No cards. No emails. No voice mails. No nothing. It felt as if these silent people had already abandoned the row boat and me having written me off as dead. Over all but the memorial service.
I considered the row boat analogy extremely profound, and it served as the theory upon which I analyzed many of my “family relationships” post-breast cancer. Breast cancer taught me as well that we are each destined to at least three families per our short lifetimes: The one we were born into, and the one we were raised by – oftentimes, but not always, the same two families. Sometimes not. And third, the family, or families we ourselves create as adults. The family I was born into, and raised by had pretty much served its purpose in my life, as it sometimes does for so many people these days. Because in so-called family relationship after another, the boat stopped during my cancer treatment, indicating to me that I had been the one doing most of the rowing, the realization determining, in my mind, the end of the relationship.
I don’t regret those decisions either. For a woman like me can arise on any given morning, and receive news before she again lays her head down that completely radicalizes her life. Such a “normal,” so-so life can rage out of her control on the spin of a dime, the flip of a Joker, or the slip of the tongue. I have decided that if my relationship with you, whoever you happen to be, costs me too much in emotional hardship, it’s just not worth trying to maintain. Life is too short to spend it obsessed about one-sided row boats.
However, the Bible teaches that “There, but for the grace of God, go I,” and I have learned much about crises of all sorts, and the individual manner in which all of us respond to them. I am more understanding and forgiving of the people who could not, for whatever reason, allow themselves to come too close to me and my suffering. I have forgiven myself. As I had my reasons for not wanting to involve myself too intimately with Carol, likewise there were those in my life who may have felt something similar.
“There. but for the grace of God, go I.”
Breast cancer – a diagnosis of cancer of any sort – is a damn well scary proposition. Fighting back cancer is a war of countless battles, smeared with blood and bodily fluids, punctuated by normally secretive bodily functions, throbbing with seemingly ceaseless pain, paranoia lurking in the nighttime shadows. The Sprit of Death chasing you in your day and night dreams. Fighting cancer back takes an willingness to rise again after every setback. It takes remembering all that is good and of sound mind in your world, and in the world, while the horror of cancer treatment competes for your attention.
During active treatment, I often dreamed of cancer as collossal in size and red in color. I still dream of it, and other things and people, chasing me as I look desparately back and across shoulders seared by Death’s hot breath. Fighting back takes an endless, if not unwavering, faith in the Spirit that wakes us in the morning, and protects us, even in our nightmares.
I am still stumbling emotionally. While I have forgiven myself and them, I have not forgotten my response to Carol, or theirs to me. I have not forgotten how frightened Carol’s situation made me feel, or how uninvolved with her I wanted to remain. I was not strong enough to fight shoulder to shoulder, to lock arms with Carol who by all accounts fought brave, courageous battles in a war that she eventually lost.
Nor have I forgotten how the very people I thought would make themselves available to me after my diagnosis, where unavailable. I was not a friend to Carol. Nor was I a spiritual warrior in her defense. I was unable to set aside my own wonderings so that I could help another face her own very real, and tangible reasons to be afraid. My fear at the time was based on “what ifs,” while Carol’s fear was rooted in ”what now?”
Now it’s my turn to ask “what now?” Why did cancer happen to me? Where do I go from here? How wlll I manage a peaceful, if not pain-free, life? When, if ever, will I feel normal again? What is normal? Will I remain cancer-free? If so, what will I do with the life that remains? If I don’t, what then?
So many questions. So few answers.
When the Last Shall Be Dead! – Part 1
I won’t give away too much of Tyler Perry’s movie, Madea’s Big Happy Family, if I tell you that Shirley, portrayed convincingly by NAACP Image Award winner Loretta Devine, is sick. As I watched Ms. Devine’s portrayal of a woman stricken by a life-threatening illness, I was reminded again of the number of Black women dying daily as a result of breast cancer.
Two years ago in July 2009 at age 50, I was diagnosed with Stage 1 breast cancer after an annual mammogram revealed a tumor in my left breast. According to the National Cancer Institute, a woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful BRCA1 or BRCA2 mutation. Men with these mutations also have an increased risk of breast cancer. Both men and women who have harmful BRCA1 or BRCA2 mutations are considered at increased risk of other cancers as well.
After discovering I carried the BRCA1 mutation, in September ‘09 I underwent a bilateral mastectomy. Weeks after breast surgery, I underwent seven rounds of one type of chemo , a year’s worth of another, breast reconstruction surgery, followed by surgery to remove my ovaries.
Of course, I was not alone in my experience. Although Black women aged 45-65 have a reduced overall lifetime risk of developing breast cancer compared to white women of the same age, the likelihood that they will die from the disease is higher. In 2010, the CDC reported that breast cancer was the leading cause of cancer death for Black women aged 45-65 years old. Black women also have a lower 5-year survival rate compared to white women, and unlike their older counterparts, younger Black women up to age 44 aremore likely to develop the disease compared to white women the same age. The type of breast cancer they develop is also at increased risk of being more deadly.
Throughout my own journey in the chemo room, or waiting to see the doctor, or sitting in a support group, I have begun to wonder: Where are the other Black women? Why am I so often either the only, or one of the few Black women present? Is it because I am blessed to have health insurance, and so I have more liberty to choose how and by whom I will be treated? Or is there some other reason for the scarcity?
In the movie, Mother Shirley knew she was sick and dying, but apparently she hadn’t said a word about it to her adult children. Sadly, Perry’s characterization was on point. If the working woman of the house is sick, who will earn her paycheck? If she’s a single mother, who will cook, clean, and care for the children? If she is in a relationship, she may worry whether it’s strong enough to endure the experience.
A women’s female identity is often strongly tied to her feminine characteristics. Will he still think she’s attractive minus a breast? Will she? When you’ve been accustomed to living independently, coming and going as you please, caring for others, some women are more willing to take the risk that cancer won’t stop at their house, rather than jump into the fight against this awful disease by going for regular mammograms and doctor’s visits.
The Bible tells us that “the last shall be first, and the first shall be last,” but this sort of self-sacrifice is not only deadly, it is ultimately unfair to the people that love and depend on you. Just yesterday I learned about yet another middle-aged Black woman succumbing to breast cancer. She leaves behind her husband and the two grandchildren they were raising. From what I understand, she either knew she had cancer, or suspected something was wrong. It was too late when her condition forced her to take action.
Was her death worth the wait?
The Most Beautiful Flower Author Unknown
The park bench was deserted as I sat down to read
Beneath the long, straggly branches of an old willow tree.
Disillusioned by life with good reason to frown,
For the world was intent on dragging me down.
And if that weren’t enough to ruin my day,
A young boy out of breath approached me, all tired from play.
He stood right before me with his head tilted down
And said with great excitement, “Look what I found!”
In his hand was a flower, and what a pitiful sight,
With its petals all worn – not enough rain, or too little light.
Wanting him to take his dead flower and go off to play,
I faked a small smile and then shifted away.
But instead of retreating he sat next to my side
And placed the flower to his nose and declared with overacted surprise,
“It sure smells pretty and it’s beautiful, too.
That’s why I picked it; here, it’s for you.”
The weed before me was dying or dead.
Not vibrant of colors: orange, yellow or red.
But I knew I must take it, or he might never leave.
So I reached for the flower, and replied, “Just what I need.”
But instead of him placing the flower in my hand,
He held it mid-air without reason or plan.
It was then that I noticed for the very first time
That weed-toting boy could not see: he was blind.
I heard my voice quiver; tears shone in the sun
As I thanked him for picking the very best one.
“You’re welcome,” he smiled, and then ran off to play.
Unaware of the impact he’d had on my day.
I sat there and wondered how he managed to see
A self-pitying woman beneath an old willow tree.
How did he know of my self-indulged plight?
Perhaps from his heart, he’d been blessed with true sight.
Through the eyes of a blind child, at last I could see.
The problem was not with the world; the problem was me.
And for all of those times I myself had been blind,
I vowed to see the beauty in life,
And appreciate every second that’s mine.
And then I held that wilted flower up to my nose
And breathed in the fragrance of a beautiful rose
And smiled as I watched that young boy,
Another weed in his hand,
About to change the life of an unsuspecting old man.
First Lady Michelle Obama – National Day of Service and Remembrance
Be Grateful (Originally posted on December 20, 2009)
Cancer teaches quite a few lessons … some more dramatic than others. One of the big ones is the necessity of being grateful. Grateful for an appetite, for the desire to eat. Grateful for functioning taste buds on the days when you have an appetite.
Grateful for family … especially the family you live with every day. However configured, the family living closest to a cancer patient gets to see all the process in all its gory details.
The wild eyed look that flashes across your face when you realize you’re about to barf. The barf all over the floor when getting sick becomes inevitable. The endless backaches, the lost hair, trips to the emergency room, the many other ugly side affects associated with cancer treatment that one tries to keep to herself.
As for me, I’m most grateful for Richard. Since the day I was diagnosed my husband has been to most, if not all of my many doctor appointments. His was one of the last faces I saw before being wheeled into surgery. It is his name I call out in the middle of the night. His is the face I search out while laying on the emergency room gurney.
Richard and I have been together nearly 16 years and like most couples, we have our good and bad times. Periods when we couldn’t keep our hands and minds off of each other. And other times when one or both of us simply didn’t like the other. But through it all and through these years, we’ve always loved each other.
Although I admit that he is a better nurturer than I … it seems to come natural to him. Whereas I tend to have to remind myself about being nurturing, we’ve still tried to be there for one another in any way we could.
A lot of Richard’s nurturing occurs in the kitchen … he’s a really good cook and he enjoys it. So I can only imagine what he must have thought 16 years ago when he entered my apartment for a week long visit only to find no stove, no frig, and only one place setting in my kitchen. By the time we got to together my cooking candle had burned out and I’m afraid it has yet to make so much as a flicker these days. I never led him to believe I either enjoyed or was very good at cooking. Instead, I collect cookbooks with glossy photographs.
I don’t know what I would have done without Richard’s caregiving these last few months. When no one else is there, he’s been by my side in full support. This despite his own healthcare issues. And as helpful and encouraging as every one has been towards me, no one – including my children and his children – have been there for me like he.
Another thing about being grateful – it loses its power when you keep it to yourself …
Thank you, Richard … I love you!
I’ve Asked God for 30 More Years … (Originally posted on December 8, 2009)
Since I last wrote, I’ve made another trip to the emergency room and I’ve received a blood transfusion because my iron levels were too low. Given the heart attack I experienced in April, my oncologist is being extra careful about my heart, and so am I. She decided to order the transfusion after I began experiencing chest palpitations/pains.
I’ve spent a lot of effort writing about the negative aspects of breast cancer, of discovering that an alien endeavor had taken up residence in my left breast.
I’m happy to announce that as far as my doctors and I are concerned I am now “cancer free” — an official “survivor.” God blessed me to find the lump early and when my physicians went in during surgery, the cancer had not moved beyond its original point of discovery. It had not moved to my lymph nodes (Great!) and it appears I made the right decision to remove both breasts since undeveloped cancer cell were discovered during the pathology exam of my right breast.
I cannot express often enough the necessity of early detection for both breast and prostate cancer … access is the key word here my people!!
I’ve asked God for 30 more years … I’ll take more if it’s given. But I understand in a way I never did before that I am living a finite life, and while no one wants to sit around thinking about their ultimate demise, I understand much more intimately that we are each provided with a set number of years, determined while we were still in our mother’s wombs.
What I will do with those years is yet to be determined, but with God’s help and grace, it will all work out just fine.
God is Good (Originally posted on November 12, 2009)
Prayers were answered yesterday morning when members of my physician/nurse practitioner team decided to re-adjust the amount of one of my chemo drugs. They felt the level of pain I described occurring after the first infusion, especially as it originated in my back, indicated that my kidneys were under distress. They also increased the intensity of the pain meds so I will not have to take as many pills to experience the same level of comfort, thus decreasing the added stress on my kidneys with the over-digestion of acetaminophen (Tylenol) …
I grew up believing that my doctor’s opinion were always correct, and that it was disrespectful to comment or question his advice. As an adult I’ve learned, sometimes the hard way, that I must serve as the most important member of my personal healthcare team. I’ve learned that it’s okay to disagree with my doctor’s advice, and to seek another opinion, or physician, if I deem it necessary for my own continued good health. Now I come to appointments questions written down, poised to write down the answers I receive, understanding my right to know what’s happening within my own body.
Extensive reading, research and interviews have helped me unveil some of the mystery behind healing. While my own life experiences have taught me that members of the healthcare profession are humans just like the rest of us. Which means they have families, their own illnesses, financial uncertainties, experiences and crises as do we. As patients we have the right to communicate our true worries, triumphs and concerns – to sometimes make ourselves loud and obnoxious so that we are heard and our needs met …
Much of diagnostic medicine is based upon hypotheses, educated guesses about what should or should not happen to you, based on what did or did not happen to the last patient. So it’s critical that patients communicate honestly with their medical teams. In turn, a knowledgeable patient is a wise patient, and wise patients follow their knowledgeable physicians’ directions …
I am someone who looks for God in ordinary, every day experiences and crises, believing as I do that the sum total of our every day experiences and crises constitute the totality and legacy of our individual and communal lives. Each day is built upon the strength of the last; likewise, each week, month, year, and decade acts as a foundation for the next and the whole becomes the legacy we leave behind.
Bishop T.D. Jakes regularly counsels his parishioners at The Potter’s House in Dallas that “God is good all the time, and all the time, God is good.”
I feel good right now … I’ll keep you posted.
Surviving my Nadir (Originally posted on November 10, 2009)
It’s been several weeks, a couple of days before my first chemotherapy infusion (Friday, October 23, 2009), since I last posted on Tuesday, October 20. I began feeling the side effects of the drugs within 36 hours … mostly muscle pains, spasms, and cramps which got increasing worse as the days progressed. That Wednesday my sister, baby niece, elderly aunt, and brother-in-law arrived in town for a surprise visit. Recovering from surgery on September 15, I was more active during their 3-day visit than I had been for weeks. Initially, I thought my back was aching because I had been bending over with and carrying the baby.
However, throughout the week I began to feel increasingly worse even though I was taking the meds as prescribed, they weren’t breaking through the pain. I’ve since found out that my chemo nurses have standing orders to hydrate me with saline and administer anti-nausea meds whenever I show up at the cancer center asking for them. I know better now, but by the Thursday evening following the first infusion I was getting sick to my stomach and experiencing severe diarrhea. After I had no more to give, my stomach continued to spasm, and I couldn’t make it stop as everything came back up and then nothing came up.
I began to panic. I could feel myself screeching towards a pain crash; the level was increasing with the passing hours. All I could do was moan and cry out, while my dear husband nursed and cleaned up after me. I was physically and mentally exhausted. My head was ringing. Nothing was staying down. I felt dehydrated. I was sick everywhere, but mostly in my stomach and back and the entire middle of my body.
I remembered that the nurses at the cancer center had warned me not to allow myself to remain sick without telling them, and if it got bad after hours, to take myself to the emergency room. I had already called and talked to my doctor, and had done what she’d told me to do without getting much relief. I just couldn’t break through the pain, even as I felt myself falling off the cliff. In March I turned 50; in April I experienced a mild heart attack, and I have high blood pressure. The pain was so bad, I was afraid I might have another heart attack. Around 1 a.m. I dialed 911 and shoved my cell phone into my husband’s hand, demanding that we call for an ambulance.
The ambulance ride was cold and sterile, the attendants mechanical and flippant. Once inside, my complaints of being cold (they took me out in the night air in my flannel gown) were met with the tossing of a sterile airplane type blanket across my legs. As he began taking my vitals, which were thankfully stable, it became more apparent to me that with me was not where he wanted to be. When he climbed up front, leaving me alone to shiver and slide around on the narrow bed, I focused on my breathing and prayed to God to ease the pain.
It’s been my observation that vocal patients tend to make healthcare workers nervous and jittery. I, however, am not one of those patients that suffer pain in silence. I am very vocal, and once inside the emergency room, I was moaning, crying, and praying out loud.
“ On a scale of 1 to 10 with 10 being the most, how much pain are you in?”
“A 12!”
I had insisted on passing up a closer hospital in order to be taken to the hospital I’d just recently been admitted into as a surgical patient. It took several attempts on our part to explain to the emergency room nurses, without being so matter-of-fact, that no, I was not a junky off the street. I was one of their cancer patients in need of emergency assistance.
Finally something clicked – probably my records popping up on their computers – and their bedside manner became warmer and more comforting. (Which brings to mind an entirely different train of thought about how substance abusers are ostracized, but I’ll leave that for another essay.) They gave me anti-nausea and morphine for the pain and around 4 on Friday morning sent me home with instructions to keep my cancer center appointment scheduled for later in the day.
Back at home I managed to get a couple of hours sleep before my stomach woke me up. I needed to eat and re-hydrate myself, but I was afraid I would get sick again. I judged that I was at that point at level 8 on the nurses’ pain scale. While I waited for my husband to wake up so we could keep my appointment, I decided that chemotherapy was not for me, that I would just have to roll the dice as to my odds of a recurrence. I began practicing my speech, how and what I would say to my medical oncologist when I announced to her that I wanted no more of chemo.
Finally at the center, after a liter of saline, more anti-nausea and pain meds, I was out of pain, hungry, and feeling more normal. The chemotherapy nurses, whom I’ve begun to refer to as my Nightingales, explained that the first cycle is always experimental as no one knows until side affects occur, or don’t, how a patient will respond to chemo. I was to remain hydrated and as full as possible. Now that I know how my body is likely to respond, I am to stay ahead of the pain by remaining heavily medicated. This was not the time to be stoic and heroic about pain endurance. In response to my un-asked question about possible addiction, I was told that as long as the medicine was responding to pain, I would be okay. Patients run into trouble when they continue taking the meds after the reason for them has passed.
My husband and I have added another word to our lexicon: “nadir,” a noun defined as the lowest possible point. During the first week after infusion, I felt like shit as I slid closer and closer toward my nadir, my lowest point, which I crashed into on that following Thursday night. The second week I spent recovering, while the last week before starting all over was my best of the three.
So, here I am again at the Tuesday before my second cycle. Tomorrow I’ll write on my wall and post photos of myself in the chemo chair. Pray with me for a better outcome this time around.
Lifetime Member of the Breast Cancer Survivor’s Club (Originally posted on October 20, 2009)
While my faith assures me that I am now fighting cancer, and that I am winning, I currently feel like whining, because I simply do not want to go through this!!
I whined this morning to my husband “I was a good girl. Why did I get cancer?” He replied with something that sounded like “bad things happen to good people.”
I know it could be worst, I know there are many, many others suffering around the world much more intensely than I — but the question remains unanswered.
I believe I have it in me to fight when I must, just as I have in the past when it’s been necessary – and I believe I will emerge on the other side of this war victorious – even though I don’t like to fight! Always been more of a lover than a fighter more likely to smile and hug you than I am to hit you.
But fighting I am and quite frankly, it’s wearing me out already and I’m not even halfway through the war.
Chemotherapy begins for me on Friday, October 23rd. This morning I showed up at a doctor’s office to have a chemo port surgically placed in my chest, right under my collar bone. He, the doctor, didn’t make it into his office after being called to a trauma incident at the county hospital. The appointment was rescheduled for Thursday morning at the local hospital where my breast surgery was performed.
I was in tears this morning because now that I am recovering from surgery, I am not at all looking forward to the rest of my cancer treatment … port placement, chemo, implant expansions, port removal, ovaries removed, final implant surgery, daily meds for the next 5 years, worry over the possibility of a recurrence the remainder of my life.
I’m tired of feeling the aftermath of cancer, waking up in the mornings, the tightness of my chest reminding me I know longer am in possession of my own breasts. I’m weary of talking about cancer every time someone asks me how I’m doing. But I don’t want to brush the question off because some days I am not “Fine. Thank you.” I am sick of thinking about cancer as I would much, much rather be creating middle-school lesson plans. And yet, I cannot lay down my sword in the middle of battle — I’ll get slaughtered!
I just had this urgent need to tell someone that from day-to-day, even from moment-to-moment, fighting cancer is one bitch-of-a-tough-war, and I just ain’t lookin’ forward to the battles folks!
