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 gorey 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 backahes, 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 dispite 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!
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 palpatations/pains.
I’ve spent a lot of effort writing about the negative aspects of breast cancer, of discovering that an alien endavador 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.
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.
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?”
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.
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!
October is Breast Cancer Awareness Month … please schedule your own mammogram, and/or encourage a loved one to schedule one for herself.
Any physician will tell you that the only biological purpose for a woman’s breasts is to feed her babies. But breasts appear long before a girl is ready to become a mother, and whether or not she eventually gives birth, her breasts and how she presents them make all sorts of statements about her femininity, her self-esteem, her sexiness, and how society judges her attractiveness. Potential partners are very likely to include a woman’s breasts when judging her physical charm – perky and petite, full and voluptuous, or somewhere in the middle.
My relationship is not much different. I’ve always known that my husband, visually oriented gentleman that he is, was quite attracted to my breasts. Within days of my diagnosis one of my many concerns was whether he would still find me attractive without them. The night before surgery, at my urging, he took more pictures of them now marked with incision lines made earlier in the day by the plastic surgeon. Before falling asleep we gently bid them good-bye, caressing and kissing them as we tried to remember how they felt … how they would never feel again. And in those intimate moments he once again assured me that he loved and had married me, not my breasts.
Still, that night I dreamed I was at the hospital’s front door and he and my daughter were trying to coax and pull me in. Up until the last minute a part of me wanted to back out, to call a time-out, to ask for more time to re-consider my decision to surgically remove both of my breasts.
We arrived at the hospital at 7 a.m. on Tuesday, September 15, 2009. One of our friends who had promised she would wait and pray with my family was already there. My daughter arrived soon after. Once I had changed clothes and was lying on the gurney, days passed before I was able to stand and walk on my own. After a couple of hours of preparation, they wheeled me into the operating room, and that is literally the last thing I remember until I was fully awake again around 7 p.m. that evening.
Upon waking, my natural instinct was to put my hands to my chest for a chance to feel what the people standing around my bedside could see. Even without touching them, the pain was excruciating. I felt as if I had my 7-year-old granddaughter’s training bra on – OMG the stitches and ACE bandages were so tight. And besides that, I had four plastic drain tubes attached to my rib cage – one end of each tube surgically buried into my side, while the outside end had a plastic bulb hanging from it. Every move, but particularly those made on my left side where the cancer was found, was very difficult to make. I woke up in my hospital room to everyone’s smiling faces, but inside I felt weak, vulnerable, and totally out of control.
My mother, Florida, died suddenly 35 years ago when I was 15 years old. Beginning with Mother’s death, and living with the knowledge of my father’s obvious disregard, I’ve felt forced to accept the belief that in order to survive, I had to learn to live a strong, very independent, self-controlled adult life. Many other women have stepped into that void; loving, nurturing women whose presence makes the heart emptiness left by Mother’s absence less difficult to bear. I’ve gone through all sorts of life experiences with these women holding my hand – teenage wife and mother, graduation from college, divorce, became a grandmother, married again, finished grad school, suffered a heart attack, diagnosed with cancer – all without the benefit of Mother’s presence, encouragement, and comfort.
As a consequence of so much “courageous” living, for a very long time my life’s theme has been that I have only myself to depend upon. I’ve believed that I have to present myself to friends and family as some sort of Super Woman who can and does stand on my own two feet; a woman who doesn’t need other people to pay her bills, fix her meals, or take care of her. My reasoning: if I’m not always pleasant to be around, always smiling and optimistic, and always brave, those close to me will reject and leave me as Mother left in death, and my father left by choice.
So, here recently when I’ve felt incredibly sorry for myself, I’ve wept silently in the night trying not to wake my husband. When cancer makes me feel like a caged, damaged animal, I’ve hesitated to write in my blog because who wants to hear all about someone else’s pain and suffering?
Cancer, however, is teaching me that a certain maturity runs parallel to accepting benevolence gracefully. Growing up, I was taught that to ask for help was a sign of vulnerability, and to lose control was just plain foolishness. From numerous pulpits I was taught that to admit fear was a sign of faithlessness that real Christians aren’t fearful because real Christians are faithful enough to believe God will take care of whatever is troubling them.
Cancer is teaching me – again – that just as flowers require rain and darkness in order to bloom brightly in the blazing sunlight, we too in order to grow and become the women and men we were meant to become, also require seasons during which the nights are long and the days are gloomy. Cancer is teaching me that everything that happens to each of us is ultimately for some divine reason about which we may or may not ever realize in this life.
Cancer is teaching me that while I have run into people whose offers of help are nothing more than disguised reasons to make me feel beholding and needy, there are many more people in my life who are genuinely concerned about my health, about how my husband and family are, and how we are managing this current life’s challenge.
So, when my friend stopped by the house yesterday to simply and sincerely ask: “How are you doing” my response was to lay my head on her shoulder and to weep long and deeply from a place in my spirit I have repressed for far too long.
What a relief.
I dreamed about them again last night. I dreamed about their beginnings. I dreamed about how they’ve existed parallel to my life, serving and exposing me, reflecting my rebellion, betraying my trust. When I awoke, my breasts were sore and achy, probably due to my monthly cycle. But it doesn’t take much creative muscle to imagine that my brain has let slip the fate that awaits them in just a couple of days.
I was an early bloomer, at least 8 years old when they made their debut on my flat chest. One of the first in my class to sprout, I was at first ashamed of them. The source of pointing and giggles from the other little girls, they were subject to be grabbed and pinched by pubescent boys. Mother noticed my frisky adolescent curves, too, and ceremoniously presented me with a girdle.
From the beginning, my breast seemed to exist parallel to my life. They grew peacefully upon my chest, and I did my best to ignore them. Then when I turned 10, they became more interesting as I noticed how interested middle school boys are in girls with perky bosoms. Suddenly, they had a purpose.
The period between 10 and 15 years old – 1969 to 1974 – my breasts became for me symbols of conjured up courage and imitated maturity. Teenage boys assumed I was much older than I actually was, while couldn’t-care-less men approached me boldly. I learned to embrace the power of my bouncy boobies, to appreciate the attention I got because they were on my chest.
I was particularly fond of strutting up and down my working-class Chicago neighborhood outfitted in playfully sexy halter tops and rump revealing hot pants. Naturals were popular then, and my own was always perfectly coiffed. Sleeveless triangular material that tied around the back and again at the back of the neck, my favorite halter tops loosely covered my braless breasts, while my shoulders, upper back, and midriff were bare and exposed. Breasts weren’t so bad after all. I was liberated by the attention.
On television, at the movies, on the covers of Ebony magazine, all around me liberation of one sort or another was being proclaimed and claimed – in an overall rise in youth culture, a national demand by Blacks for civil rights, and second-wave feminism. James Brown recorded and released in 1971 the hit single, “Hot Pants,” which played in heavy rotation on the city’s all-Black radio stations.
Thinkin’ of loosin’ that funky feelin’ don’t!
Cause you got to use just what you got
To get just what you want
Hot pants make ya sure of yourself -good Lord
You walk like you got the only lovin’ left
I was a young teenager, a virgin barely kissed, my own liberation dormant, untested. Yet, I attracted and reveled in the rootless affection the soft roundness of my breasts attracted, and instinctively I knew the Godfather of Soul was singing about me.
Then the babies arrived, a daughter when I was 17, and a son at 19. As my belly grew, so did my breasts until they were so big and full of milk I didn’t recognize them. I remember staring at myself, thinking I looked like someone had taken me by the mouth and blown me up to resemble a human cow. Whenever it was time to feed my babies, or when they simply cried, the fullness in my chest could bring tears to my eyes. The leakage through my clothes made me turn from mirrors in disgust.
So in spite of my mother-in-law’s pestering, I reclaimed my body. Stocked up on formula and glass baby bottles, and stubbornly refused to breastfeed. I was not yet 20 years old. The health benefits of breastfeeding were not as well known. Young and hot, I was not interested in latching babies to my breasts. More than 30 years later it seems my mother-in-law, bless her soul, was right all along as studies now show that breastfeeding appears to protect against breast cancer, probably by affecting levels of estrogen in a woman’s body.
Raising the children through their middle years, I went through an early period during the 1980s where I deliberately hid my breasts and any hint of femininity under layers of mannish styled clothing. From somewhere I got my hands on an old discarded army jacket that I wore everywhere accept to work. I was most often seen with a cap on my head. When hatless, I wore my chemically straightened hair brushed back flat against my head.
I remember now that I felt betrayed by my womanhood. At home I was wife and mother, and thus, primary manager of my young family. I look back at photographs of myself, and I am clearly depressed; although I was not yet 30, I look every bit of 40 years old. During those years there was nothing about being a woman that I wanted much to do with.
I was in my 20s, and had by then experienced a few unfortunate experiences. Incidences when my attractiveness and inexperience nearly got me raped or assaulted. Instead of welcoming the attention of men, I began looking for invisibility, corners to hide in. I spent an entire winter hidden under clothes that silenced the hecklers, and made strangers ignore me. Without raising my voice above a whisper, I silently protested the unfairness of being female in America.
The end of the ‘80s brought with it a determination to nurture myself in a way I had never done before. The children were teenagers, the marriage was over all except the walking out, and I wanted something better for myself. Four months before my 30th birthday I enrolled in college where I earned my degree in magazine journalism.
Those three years in school were so liberating! In the company of encouraging professors my intelligence was fed, and my self-confidence bloomed. After graduation, I cut my hair and began wearing it naturally again. I revamped my wardrobe, and unearthed my sassiness. Pictures taken during this season of my life show a smiling, contented woman, her silky legs unfurled under short skirts, her plump breasts bursting out of her blouses like crocuses in springtime.
Since discovering cancer in my left breast, and deciding a double mastectomy is the right thing for me to do, I find myself unconsciously massaging them. Holding them I try to burn in my memory how they feel to my touch, how they feel when they are touched. Last week I stood in the bathroom mirror and took snapshots of them with my cell phone camera. Goodness, are they ever droopy, ravished by pregnancy, age and gravity, racing one another to my lap. I attempt to cheer myself by reminding myself that thanks to implants, I’ll be 80 with the bouncy bosom of a 20-year-old.
On Tuesday, September 15, 2009, I will lie down and when I raise up again my body will be absent the breasts that have reflected so much of my life back to me. We’ve been through a lot together, me and my breasts, and while I didn’t ask for them, we’ve grown attached. Never knew how much until I had to contemplate losing them. But if nothing else, my breasts have taught me a lot about how society defines me as a woman. And they’ve helped me to grow into my womanhood as they became a reflection of both my strength and my vulnerability.
It was a wild ride, but soon we will part company. And even though no one looking from the outside in will be able to tell the difference, I will know they’re gone, and I will miss them.
Many Christians are under the mistaken notion, to paraphrase Kirk Franklin, that storms are God’s way of punishing us. But I too submit that this is not true theology, that rather it is a form of Christian thinking that more reflects how we treat one another, rather than how God treats his/her beloved children.
Just as plants require sunlight and warm weather to grow, we too require rain and darkness over the course of a day, of a season in order to become the flowers we were meant to be.
So no, I don’t believe God did not give us the spirit of fear. She not only gave us the spirit of fear, but the spirit of love, and determination, and courage as well. Even Jesus, who we esteem above all, acknowledged the spirit of fear possessing him when he asked God to remove the challenge that was before him.
Often we are afraid to admit our fear, to embrace it and acknowledge it because we don’t want to appear weak, vulnerable. But sometimes that’s where we are, and fear is just what we feel.
While I’ve always known that just one serious illness can bankrupt a family’s finances, it was not until my own recent cancer diagnosis that the truth of that statement became a reality to me. One imagines that private insurance is a blessing, and in many ways it is, but paying $30 every time you visit the doctor, and you’ve got at least 3 doctors to visit several times in one month is stressful on even a middle-class family’s budget.
With private insurance, a co-pay of as much as $30 is due each time a cancer patient goes in for radiation treatments sometimes as often as five times a week for as long as six weeks. A co-pay of $30 is due each time that patient goes in for chemotherapy, and each time she visits any one of several doctors for follow-up appointments.
Then there are the co-pays ranging from $10 – $30 for monthly prescriptions, and funds needed for surgical dressings. Add to all of the above the high cost of eating nutritionally balanced meals. Feeding a family inexpensively is possible, but keeping a family fed on a steady diet of hot dogs, lunch meat, and other cheap foods is also nutritionally unsound.
President Barack Obama was overwhelmingly elected because this nation’s electorate … Democrats, Republicans, and Independents … wanted change. Those of us that voted for change must continue to push for change across the board, including comprehensive healthcare reform. We must pick up where the late Sen. Teddy Kennedy’s fight for access to universal health care for all Americans ended. We must continue to make the demand that healthcare is a right of citizenship in this the most powerful country on Earth, rather than a privilege of the rich and well-connected.