“We don’t like your image. Come back tomorrow.” The words that I heard just before I hung up my phone. This wasn’t about public persona either. No, the image referred to was the mammogram that I had just had. Number 13 in a series of annual boob squishings.
I was 42 years old, a wife and the mother of a 4 year old daughter. We were getting ready to build our dream home and move to suburbia in Bixby, Oklahoma to raise Abby, plant flowers, walk dogs, go to basketball games and be happy.
My mother had breast cancer when I was 30. She was 67, lost a boob, took tamoxifen for five years and she was good. Hell, the day she got home from the hospital after over a week of festivities, she was out sunbathing on her deck while I passed out on her couch.
When I showed up the next day for this follow up appointment, I wanted to throw up. I lay on the table, surrounded by techs and in walked the doctor. Not just any doctor either. This guy was the head of radiology for Hillcrest Hospital in Tulsa, Oklahoma.
I tried to crack jokes as I lay there outnumbered by people who had their clothes on and one ominous looking shadow about the size of a grape with a big red circle around it on the x ray screen.
I am quite sure I was funny, but this was a tough room. Not a peep. Until the doctor took over the stage. “You have a stage 1 breast tumor, 8 out of 9 for aggressive growth…blah blah blah, blah blah blah blah” was what I heard. In an instant, I had joined the ranks of a group I wanted nothing to do with. My mother was a member, her mother had a breast removed, (unclear if that was cancer), my Aunt Rosemary had succumbed to metastasis and we had just buried a member of our church who fought long and hard for 16 years from a stage three breast cancer. And I was about to get schooled in the science of cancer, whether I liked it or not. And I did not. In fact, a lot of the information bounced right off as I was in complete shock.
My case was more complicated than my mother’s. The start to finish of it all. My journey, while not as bad as some, I mean, I lived, but what I did experience in the process was from hell. There is no other way to put it. Not only was the cancer actually a 9 out of 9 for aggressive growth, meaning whatever was in me was growing at the highest speed, my ensuing treatment and recovery spanned two long, hard years.
Cancer Treatment Center is in Tulsa and was open at that time, offering a holistic approach, using conventional medicine, spiritual guidance as well as counseling and nutrition.
I chose just plain conventional medicine. I didn’t give much credence to spiritual anything or nutrition for that matter at that time because frankly, while I was sober and spirituality is the cure for me there today, at that time, I worshipped a God in the form of my intellect and the fact that I had it all, things outside of me- the kid and the van and plans to build the house, so I saw no merit in the added expense of that other God stuff. What’s funny is that it was The Cancer Treatment Center that ultimately made me whole again at the end of what was a two year walk down a hallway that had a few burned out light bulbs along the way.
The day I found out it was cancer, I was exhausted. It was an afternoon sometime in June and I was sprawled across my bed. My daughter Abby, age four, walked in and stuck something on me and left. When I looked down, what I saw was a red heart shaped sticker about an inch in size that she had gotten out of a February issue of a kid’s magazine. And when I looked at the spot where she had (not so) randomly placed it, it was right where the tumor was located. This was one in a series of many moments that drove home the undeniable fact that God was present in the midst of a very rough patch in my life.
In order of appearance, the treatment players were these:
July 18, 2002-Lumpectomy in Sunny California, where we were led by a long set of circumstances. These made Dr. John Phillips, a brilliant surgeon in Tulsa, Oklahoma who had taken care of my mom, and removed many breasts once belonging to old Tulsa oil money bless the trip.
Dr. Phillips is part of the reason I am still here because right after my mom’s surgery, he sat me down when I was just 30 (like the father I did not have after age 7) and said, “You, young lady, will have an annual mammogram from now on.” I did not do the recommended self exams because I had fiber cystic tissue, a.k.a. lumpy boobs and the “normal” bumps to the touch made me gag, so thanks Dr. Phillips. Those mammograms paid off.
Lumpectomy is where they just cut out the lump and the tumor, along with a prudent amount of lymph nodes from under the arm so that they could check them for cancerous cells. The good news for me was that it came back a negative, meaning that avenue for spreading was likely to be a dead end.
Lymph nodes are small, round or bean-shaped clusters of cells. Inside lymph nodes are a combination of different types of immune system cells. These specialized cells filter your lymphatic fluid as it travels through your body and protect you by destroying invaders.
They took 14 of these good guys away from me and I was left with the lifelong threat of a thing called lymph edema. That is when there is a swelling in the arm which can come on anytime post cancer and can be very painful. I attended a support group once with cancer survivors who had a long period of recovery and had been get hit with this painful condition out of nowhere. I take precautions with massage therapy, exercise and I wear a compression sleeve to travel.
We made the best of California. My ex -husband, who I refer to as my wusband, daughter and I sleeping together in a “Heavenly” California bed like Charlie Bucket in Willy Wonka’s time. We lived at the Westin Hotel in Costa Mesa, near the breast care center at Fountain Valley. We were there for a couple of weeks and while there, we enjoyed the beaches of Malibu, Laguna and Huntington.
The day after my lumpectomy, I left my wusband and Abby asleep, slipped off to La Provence, the fancy hotel coffee shop for a scrumptious celebratory bowl of oatmeal that had creme brulee on top. As I made my exit, I stopped at a round table of people who appeared to be having a business breakfast, uninvited. “Yesterday, I had cancer. Today, that tumor is in a ziplock in a dumpster somewhere in Orange County.” This was my boasting. It wasn’t much weight loss to be rid of that tumor, but the weight lifted was immense. The response was enthusiastic as they gave me a unanimous round of applause.
A day or so later, we got a doctor’s note for the short lines at Disneyland and went to the Magic Kingdom. I had never been and since my daughter was four, well, we just HAD to go. We had a great time, I bought out the gift shop and then it was time to return home to our “new normal” life living after cancer in Oklahoma.
Summer/fall 2002-Next up, chemotherapy. I could paste the definition of the word and the process, but my version will make the point. It’s liquid poison. Used to kill lots of things. Like cancer cells, healthy cells, happy cells, appetites, spirits and energy reserves, and any hair that you might be fond of and even some that you aren’t.
Abby was also quite cognitive of the fact that I was going to lose my hair because I was sick. “Mom, I wanna shave my head.” She sounded like a teenager, standing next to me in the bathroom at Lowe’s, until she followed that up immediately with a perky “Will it grow back in two weeks?” We compromised and she settled for a mohawk with blue glitter.
When I was pregnant just four years before this, I spent my first trimester in bed and in the hospital for nausea, but let me tell you, that was NOTHING like the nausea I had with the “A/C Cocktail,” as the kids in the clinic like to call it. That stands for Adriamycin/Cytoxin. Two toxic liquids that get shaken, not stirred, then placed in an IV and slowly, but surely, over a period of hours, with six trips over a couple of months to just drive that shit home, sent into the body through an IV and a port. Just to give you a clue, Cytoxin has a pet name of “Red Devil” as it is one of the most toxic of all. If it gets ON the skin, it can cause severe burns. And from my experience, (I won’t get into much detail,) it felt like gasoline coming up my throat when it left me through a different pathway from the nice little port it came in on under my chest skin.
The day before chemo was to start was a field day at the hospital. I was wheeled and rolled from place to place to get checked out for treatment. Bloodwork and installation of a chemo port, all part of the day. A port goes in the chest area so that there are less needle sticks in the skin so that when they plug in the IV, the access is already there.
Somewhere along the course of my day, I decided to have a party. That night. I called it my “Comfort Shower On Chemo Eve.” The idea was to have a party to distract from the fact that I was having chemo the next day. And it grew to include a cost for admission which was a tube of pink lipstick.
My anxious brain had a wild idea to start a foundation called The Great Pink Hope. I had worked in low income housing and when I found out I had cancer, I learned that the demographic of low income and minority women had a higher incidence of breast cancer. I thought that maybe these women, who typically did not have access to any reliable transportation if they did go for a mammogram, could be coaxed out of their apartments to be tested with some kind of mobile mammography service by giving them a free tube of pink lipstick for their trouble.
It was a slow news day in Tulsa, so all three local TV stations showed up to cover the happy event. One ran their story in a special that October during Breast Cancer Awareness Month. I confess, I invited them. I still knew the number to the KJRH newsroom, Tulsa’s NBC affiliate where my brother had been a reporter in the 1970’s and I felt like this was good news.
By the end of the night, a good time had been had by all 50 or 60 people who attended, some I knew, some I had only met that day in my travels through the hospital halls, and whose cars at one pointed wrapped the street next to my house down one side and filled the cul de sac on the other. It looked like that scene from Field of Dreams where all of the cars showed up at the baseball field. “If you invite, they will come.” And they did. Leaving me with a huge bowl of pink lipsticks ready for a good night’s sleep.
My posse and I arrived for day one. Me, my wusband and daughter, our pastor, my mom and my neighbor all crammed into the waiting area. Then they took me back first, and in a few minutes, my wusband followed. On his way, he was met by a woman wearing a white coat with her name embroidered on the pocket who claimed she had been to med school and who, violating HIPAA, spoke to him before speaking to me about her plans for my (mis) treatment.
“Your cancer is back. It’s in your breast, your liver, your uterus and your ovaries. While it is incurable, it is treatable. We can make you comfortable for two years, using the drug Taxotere.” I could only wish that this shock came from a toaster dropping into my tub, but no. Not only was I just pronounced soon to be dead, but the drug she named to “make me comfortable” was a word I had heard once before.
In the midst of all the jargon and staging and planning in California, the one thing that got through was the result of my assay, which is the process they use when they cut up the tumor and test various toxic cocktails to see who the best ones are for the job. And the one drug that my tumor essentially said “F*** no, I won’t go” to was called Taxotere.
I had California on speed dial and while I stood in line for stand by boarding, I prayed to God, “Please get me on this flight.” when my name was called and I boarded to seat 1 A.
Across the top of my chart, this oncologist in California, who actually went to class looked at me calmly, then looked down at my chart, and then popped his head up when he realized it was me. “What are you doing here? You are supposed to be starting chemo in Oklahoma.”? Incredulous in his affect and tone, while trying to remain professional. “The doctor over read her chart.” His words to the diagnostic center (I think it’s code for “some doctor f**ked up here”) where I would spend the next four days, drinking barium smoothies, getting injected with contrast fluids, having my ears plugged to drown out the hammering of the MRI. Four days where my 9 out of 9 for aggressive cancer, if there were any crumbs left, was throwing a party at my expense.
On day five, I was cleared of all counts. And the death penalty was off the table. Now I had been given a prognosis with better odds, a first round of chemo and a plane ride back to Oklahoma to get back to my “new normal” life as a cancer patient.
And that woman in the white coat in Tulsa? That was in the (mal)practice of prescribing toxic drugs? I could not find her. And believe me, I looked. She was off the grid. I intended to file a complaint, with the hope that she wouldn’t (mal)practice on anyone else. And I said a prayer that whoever she did serve in her illustrious career might be someone across the counter at the food court, as she sported a tall, stupid hat, selling hot dogs on a stick.
During the early part of my treatment, Bob Losure was there for me. Former anchor at CNN, Bob had worked with my sister in television in Tulsa back in the 70’s. Bob was also a cancer survivor, so he knew what it was like. All throughout my treatment, Bob either called, emailed or visited me, inspiring me with his words of hope and encouragement. It didn’t hurt to hear them in that beautiful satiny broadcast voice. He interviewed me for a story he was doing about cancer and survivors.
Next was radiation. Another burning process. This time, burning tissue, leaving it hard in the aftermath. The recommendation for my flavor of tumor was 35 rounds, 5 days a week, over 7 weeks time.
By this time, it was winter, and I was bald, tired and very depressed, so after 6 rounds of laying on a sterile steel table, wearing nothing from the waist up but a creepy screen mold that was shaped like a torso set over me so that they could aim the xray guns at the small tattoes I now had dotting my upper body for precision of their sharpshooting.
It was a Friday afternoon and I had just come home from round number 6, when I sat on the floor of my brand new dining room, (we built the house against the advice of my primary care doc and friend Marilyn Culp because I thought I needed the distraction) and the phone rang. “Lucinda, it’s Jane.” My surgeon from California who had saved my life once already by cutting out that tumor and a second time when she told me on the phone that she did not “have confidence” in that cancer of an oncologist.
Her call was divinely timed, although I was a little mad at her, because when we first made the pilgrimage to Fountain Valley, California to the Women’s Breast Health Center that had been recommended, I had BIG plans to come home with BIGGER boobs than the ones I left home with. She was too good at her job, coming to tell me after surgery, “Good news! You are cured with breast conserving lumpectomy!” I was both relieved and disappointed. I think my first wusband’s message to me at the age of 23 that he thought I needed larger breasts had stuck with me all those years. I even had a Hooter’s T shirt that was autographed by the wait staff wishing me well on my trip and treatment.
“How are you?” Jane said. She let me call her Jane because California doctors like her, whose esteemed medical family have streets named after them in Long Beach can do whatever the hell they want.
I explained that my mood was not good. An underlying concern throughout as I showed up on her table with a significant history of major depressive illness. I also let on that laying there for that radiation was playing games with my head as I felt vulnerable being naked from the waist up and not free to move. “I don’t want to finish the radiation.” I told her, knowing in my heart of hearts that I could not take any more of that. “What do you want to do?” She asked, to which I did not miss a beat in my speedy reply. “I want to have a double mastectomy with reconstruction.”
I could have stopped there. At lumpectomy and chemo. On paper, I was “cancer free” the day I left a tumor in a ziplock bag somewhere in a dumpster in Orange County. And the chemo most certainly did a number on SOMETHING. But the prudent measure was not to stop there.
I had done much reading and the consensus among women who, in some cases, were in the medical field, was to go ahead and have both breasts removed to reduce the chance of recurrence because statistics were higher for metastasis when the breasts were left behind. I later learned of two cases of women who, like me, were deemed “cured” with lumpectomy and chemo, but in both cases, the cancer returned and the women did not survive.
The reconstructive procedure that I chose, after the breasts were removed, is called a pedicle TRAM FLAP reconstruction. In a pedicle TRAM flap procedure, the surgeon cuts a section of skin, muscle, fat and blood vessels from your abdomen, tunnels the tissue underneath your skin to its new location, and uses it to form a new breast mound.
In my words, what happened to me was this. Over a period of six hours, four doctors would have a part in this. The general surgeon came in first, removed the breasts, leaving the surface skin. Then, enter the plastics guy. He is the artist. You don’t need a bedside manner with this one. You need someone who thinks they are God and performs to the best of their ability. And I got that in spades. What he did was make a big cut across my abdomen in the shape of an elipse, then take the tissue and muscle there, divide it up and going under my own skin with it, he moves it up from my abdomen and into place under the top skin that remains where the original breasts once were. And if you are cringing here, sorry. But this is my story. And it is quite amazing.
While the procedure was a technical success, the recovery was from hell. At six weeks post op at home, where I was sleeping in the recliner because I could not lay down yet, the pain was severe. And because of my mental health history being part of my record with the plastic doc’s office, he was all but too eager to say hasta manana to me when I hit their magic six week mark. “Our patients don’t have pain at six weeks.” The dismissive words on the phone from his office as I was left on my own to find a solution to some very real pain that resided in my back.
It took two years from that point to find my solution. Went down the pain management hallway, treating the symptom but never the problem with fentanyl patches for a large part of that time.
Nothing was working. And the reason I was hurting there was that I was literally stuck. To myself. Yes, you can laugh if you know me. I was stuck on myself. The pathway that my abdominal tissue and muscle had travelled along my mid section from my well earned tummy tuck to my abdo boobs, as I like to call them, was full of scar adhesion. And this made standing up straight and upright completely impossible. So my 5’10” frame was working against gravity for all of that time, until finally, somehow, because there is a God and I am not him, I was directed to the Cancer Treatment Center of America for what is called myofacial release. A most gentle and gradual process of a massage therapist gently coaxing my innards to let go of each other, where they were holding me down so that I could join my fellow upright apes.
I survived. And today, I thrive. 18 years. July 18. Cancer free.
If you are reading this and you are a woman, or if you have a mother or a sister or a daughter or someone you love who you don’t want to lose, ask them if they are taking proper care of their girls. Mammography has come a long way. I learned that some women know that they should go, but they fear the discomfort that might come along with that. My reply? DO IT ANYWAY. The pain of your absence in the lives of your loved ones if you are lost to this far too common form of cancer could be prevented.
There is much more to this story, which I am telling in my book. But for my purposes here, I want to list the gratitude that I take away from my experience of having had breast cancer.
I am grateful for the oncologist who taught me to trust my instinct over someone who is quite literally practicing at their craft. She did me a favor. I have no idea what went so terribly wrong with her interpretation of my medical records, but had that not happened, I would not have seen the need to be my own BEST advocate for health and medical care. Those who, even well intentioned, practice medicine, are just people. Who went to school and got training. Don’t get me wrong, I am not dismissing the expertise of some doctors, but not ALL doctors are worth their salt. And they are ALL human. The lesson here? Trust your gut. If it says, “What this doctor is saying to me doesn’t sound right.” Listen to that still small voice. And run like hell for a second opinion.
The plastic surgeon also did me a favor. When he dismissed me and my care with the insinuation that my pain was “in my head”, it drove home for me that when a person has a mental health diagnosis on their chart, some doctors don’t want a thing to do with that. I didn’t go to med school, but I have noticed that the human head, where the mental health or sickness resides, is a part of the physical body. But hey, nobody asked me.
This was not the first time I had found myself being dismissed by a doctor with the coincidence of my chart including a mental health diagnosis and the blessing in that was the education to the fact that some doctors don’t care. Stigma is a powerful thing.
The first doctor who dropped the ball on my care over mental health issues was the man who delivered my daughter. I suffered with tremendous postpartum depression which required hospitalization after she was born, which rendered me virtually unable to take care of her. For that entire pregnancy, my resounding concern out loud with the OB/GYN doc was that I was ripe for the picking to have some kind of major depression after childbirth, based on my history and the research I had done on postpartum depression and psychosis. I had a reasonable expectation that he would support me in my care after her birth. And I was wrong, as he too, dismissed me at that magic six week mark. I guess that is a time frame that specialists get to use to decide when they can dump people who are too much work for them.
I am even grateful for the cancer. And while, at times since, I sometimes forget that I got another shot at life having survived it, it is proof in my book that God wants me here fore something. I lived through it, and since it is far too common today for people to get breast cancer, I know I did not suffer in vain because I can share my story in the hopes that it will enlighten others to see what they might expect and also what they do and don’t have to tolerate from the doctors along the way.
I am grateful for the scars that I have. My scars have made me feel unfinished all these years. They have been difficult to live with as I don’t look the same. Over the years, the scars have faded quite a bit, but I still have a long one across my abdomen and scars on both breasts which I intend to have tattoo art done on at some point as I, an artist, am my most precious canvas.
And when it comes to intimacy, it has been quite a vulnerable thing to have to prepare someone for the scars that contributed to the ending of the intimacy in my marriage of 24 years. That left a mark of its own. But it has all forced me to find a self love that goes beyond skin deep. In that respect, these scars are a thing of beauty because without them, I may not even be here.
If you find yourself with a diagnosis for breast cancer, remember that you are paying the doctors to provide you a service. Coming to an end are the days when the doctor is the authority and final say. You have always got a choice in how your care will go. Do your homework. Learn all that you can. About your diagnosis and your treatment options. If you don’t trust your doctor, find a new one. Your life may depend on it.
Find people who have been through the kind of cancer treatment that you may be facing. The American Cancer Society is a great resource for pairing people up with those who have been through that same type of cancer and the resulting treatments. I had two people matched to me as mentors for when I faced chemo and my double mastectomy. They were great comforts to me for the fact that they had survived what I was facing at a very scary time.
One of my doctor’s (I have one for every orifice at this point) said, as I look to find a replacement in my new home out of state, that a doctor/patient relationship is not a dictatorship. It is a collaboration. And should be a relationship based in a mutual respect. Especially in matters of life and death.
I don’t have a problem changing doctors as I age if I feel I am not both respected and well cared for. You wouldn’t take a Maserati to Joe’s Garage, and aren’t you worth the best you can find? I think so. Life is a precious gift. And so are you.