We have been blessed in Leadertalk.org to share our experiences and perceptions about our educational practices. Sometimes our personal lives have a huge impact on our professional practice. Today, because I have recommitted to Scott--- and you-- to post on my appointed day, the 7th, I wanted to share a personal experience that affects all of us through our experiences or those we love. I could have titled this-- How Cancer Enriched My Professional Practice; instead, it's how I stood up to cancer (and is cross posted at my blog, Drjansblog.com).
The Breast Cancer Wars
I wish to acknowledge my beautiful, dear friend, Paige Blackman Fitzpatrick who perished from breast cancer over 12 years ago after a valiant fight with a vicious, aggressive cancer. Paige’s belief in her cure, her steadfast refusal to submit to anything but positive thoughts and her truly dignified and classy response to this tragedy in her life were a demonstration of a woman of uncommon strength and courage. There is not a day that goes by, not an opportunity that I may participate in breast cancer awareness, that I don’t think of her and what she has taught me about all the things in life that matter. And so it is the spirit of love and reflection that I dedicate this blog entry to Paige and only wish that I could spend just a few moments more with her now to tell her the life altering things she taught me and how much I miss and love her.
One Sunday night in late November of 2002, I woke up in the middle of the night with a strong premonition that I had forgotten to do something very important. I was a bit terrified… it seemed to be something VERY important. My mind raced as I thought and thought and thought. As I thought, I began a breast self-examination; it was a procedure I rarely, if ever, did. And that's when I found it-- a lump in my left breast. It felt like the size of a marble. The next morning I somehow got in to see my primary care physician. Anyone who has an HMO knows that such an event is not easily scheduled, but maybe it was the terror in my voice that convinced Julie to get me in somehow; and shaken I made it to the appointment. My doctor examined my breast and felt I needed to go to a surgeon. I felt better because she would handle the details of getting me in and taking care of business. By Friday, I still didn’t have an appointment; and I was just not going to wait around to get things going on (after all, I had a nagging sister, Gale, who kept pushing me through every step on getting this thing going on).
So, my doctor sent me to get a mammogram with ultrasound. Shakily, I stood for the mammogram and explained to the technician exactly where the lump was. She put markers and indicators to help the radiologist find the lump on the mammogram and then proceeded to do films on both breasts. I waited in my paper gown shirt for the initial mammograms to come back when the technician advised me that the doctor needed a more detailed mammogram and proceeded to take more mammogram shots of the wrong breast. Then the technician took me in for a sonogram of the lump. Afterwards, the radiologist took me into his office and pointed to the films on the light boards around his office. There was a suspicious mass in my right breast (wait a minute… we didn’t come for the right breast...it was the left breast….); but he assured me that the left breast was just fine… it was nothing, just a cyst. Interestingly, over the next few weeks, the cyst went away, absorbed into my body; but it probably saved my life or at the very least got me in to see the doctor at a very early stage. The radiologist felt like it might be nothing; after all, some huge percentage like 95% of these things are nothing, but just to be on the safe side…
During the middle of all this in December I had an abdominoplasty. I had had the tummy tuck planned for months. I was finally going to get to lay down the 10 pounds of sagging skin that I had accumulated from my waist to thighs from losing over 150 pounds. I kept asking the doctors if I should put the abdominoplasty off; they didn’t feel like it was necessary. I mean, after all, it was probably nothing.
So I had the tummy tuck and a week later, drains from the incisions still swinging from my body and the pain of hardly being able to stand up straight, found me in the surgeon’s office. He, too, felt that the microcalcifications that they saw on the mammogram were probably nothing, and I better go in and have a stereotactic biopsy. I would have to lay on my stomach for up to an hour, so the whole procedure was put off until the first of January. I had pretty well convinced myself that it was nothing. How could it be anything? After years of morbid obesity, I was finally healthy and looking and feeling good. It was just a blip on the screen of life. And if you ever get a biopsy, you will find that a lot of your friends will emerge with stories of their own biopsies and how it turned out to be nothing. My own sister had had to have a biopsy shortly after the arrival of her child, and my sister-in-law had had one just months before. It would surely be nothing… just like theirs had been nothing.
And I had had enough of any form of surgery… this tummy tuck turned out to be more painful and annoying than I had planned; and though I had hoped to get a breast reduction and get that Ally McBeal look, I decided enough surgery had been had by me. I was done. And let this be a lesson to you, never say never because the next thing you know, it will be coming your way again. I went in for my stereotactic biopsy. As I drove to the hospital, I began to tick off friends and family members who hadn't gotten a cancer diagnosis; and I knew that one in eight women get breast cancer, and I thought that maybe I was the one in eight. Then I arrived and completely put these thoughts out of my head. When I saw the room, I felt like I was going to faint.
I was compliantly going through this experience when the rebel hippy that lies buried in this bureaucratic woman of the 21st century just wanted to scream… Hell no, I won’t go. I had to lie down on a table with a big hole in the middle of the table for my breasts to fall down. I laid down on that table and adjusted my breasts to hang down through the table. I had to turn my face to lie on my right ear so that I was facing the wall. Then, the technicians came in and began the manual squeezing and tugging that is part and parcel of the mammogram experience. I stoically faced the wall and Donna the nurse hopped up on that side of the table, gave me a distant embrace assuring me, and advised me to think of the future when all this would be over. I had a hard time concentrating on what Donna was saying because I was frozen in the present remembering the details of this stereotactic procedure that I had unfortunately informed myself about through the internet.
I began to hyperventilate but tried to do it quietly. I thought the idea of passing out was a very good idea. The technician was busy squeezing and putting my right breast in what appeared to be the usual mammography vice hold and then the pictures began. There was, “hold your breath” and then “breath” going on every few seconds. Unfortunately, sometimes the orderer of the breath holding forgot to tell me to breath and I would sit there holding my breath and praying to pass out from lack of oxygen soon so that I could be spared any more memories or experiences in conjunction with this current experience. I knew (from my studies) that a stick and a stinging burn were about to come next. In whisked my doctor, a really swell gal who appeared to be in my age range and had that friendly, “I am here and in charge and everything’s going to be okay” demeanor that I liked to adopt myself as a high school principal. She said, “Now, first, Jan I am gonna give you a stick and then there will be a sting; but this is going to make the whole procedure a piece of cake for you because you won’t feel a thing; and if you feel a thing, let me know and I will deaden it more and it will be very painless.”
I immediately liked her, though I couldn’t see her. I liked her authoritative voice, and I knew I was in good hands. I braced myself for the stick. I didn’t even feel a stick, and I was kind of angry at myself for even worrying about that. Then, there was a little sting. However, the electrolysis I have endured on my eyebrows made this whole procedure look like a night out with the gals. Then, the needle seemed to go in deeper, more anesthetic; and Dr. O’Dell was saying something about being half-way finished. She was constantly giving loud updates about what she was doing because my head was turned away from her, and I couldn’t see or hear her unless she spoke very loudly. I particularly liked this bulletin of where we were in the procedure because I was adopting Donna’s perspective on visualizing the future. Throughout the procedure, there were all kinds of mammogram pictures going on with me holding my breath and breathing.
Finally, Dr. O’Dell made sure she had gotten all the nasty microcalcifications out and left behind a “tag” so that if they ever needed to go back in, they would know where they had been. She said I was now a bionic woman, and I sort of liked that image. The doctor was finished. Everyone seemed to leave except I could hear some rustling in the background; and my breast was still tightly squished in the mammogram vice thing. It seemed like I stayed in that position for a long time not knowing what was going on. Later, I learned they kept me all clamped down to reduce the bleeding.
After a while, someone came back in and unclamped me. Donna the nurse took me in for a standing up, traditional mammogram and then gave me an ice bag for my breast. I was over. The results from the test would be back in a few days, the doctor felt, “It’s probably just nothing.”
Now, the high school principalship is one of those busy kinds of jobs. You go in each day with about 1 or 2 things on your calendar and then you can have one of those days where you have one parent after another showing up with one crisis after another or maybe several teachers get sick and classes have to get covered…or a million scenarios that keep you moving so quickly that 9 hours later, it is time to go home; and you realize you didn’t even fit lunch into all those activities. No day is like the day before, and it’s a great job if you like that kind of fast paced, never knowing what is coming next kind of experience.
On this Friday, I was meeting with my athletic director about choosing the next year’s head football coach. We had quite a few hurdles to get all the details worked out. Suddenly, my cell phone rang, it was the doctor, her voice was ominous as she asked me if I could talk. I shooed Phil out and asked him to close the door to my office. All I remember next was the doctor telling me how surprised she was that I had breast cancer. I don’t remember much else except sitting at my desk crying.
Now, I am one loud girl, and crying is a loud event for me. I don’t know but I can tell you that having your high school principal carrying on like that sends a shiver through an entire school. No one was quite sure what had gone on but it wasn’t good. I either could not or would not control myself. I think that falling apart on hearing that you have cancer is a perfectly normal reaction; I just wish I had been at home to hear the news. Now, in retrospect, let me say that I really do prefer to get that kind of news over the phone. I don’t want to go into a doctor’s office and fall completely apart. I want to have a modicum of a positive outlook. But getting the news at work… well, it’s one of those embarrassing events that I am just never going to remember again and can hereby release it by writing about it here.
Soon, my husband arrived (he’s a high school assistant principal), and he carried me away to the hospital where I began the procedures of getting blood tests and x-rays, etc. My husband, Pat, who is used to my screaming, yelling, laughing, demanding, and all the outgoing aspects of my personality, was not really used to this crying, pitiful creature with him. It sort of felt like the more grief, shock and consternation that I could pass off to him; the less I had to experience myself. I suppose I am going to have to make amends to him forever; but that will also include amends for a lot of other dastardly things I have done as well. But then again, he plays golf a couple of times a week with very little impunity, so maybe it was just his lot in life. I will reconsider these options in coming years.
I would be having a lumpectomy and sentinel node biopsy in a week. I called my primary care physician. I wanted something to calm me down (xanax) and something to help me sleep (ambien); and I proceeded to just make it through the next week in a sort of half alert/aware mode… which really seemed to work for me. I knew a bit about researching and began to dramatically research everything about breast cancer.
Now, if that’s not one boring grouping of information, I don’t know what is. But, when you have a diagnosis of your type of breast cancer, then that specific branch of the research is a little interesting. It’s kind of like home movies, there’s little interest in everyone else's home movies, but your own seem to be truly engaging. I have always detested the way I do life. I never quite do it right. I mean if I get a cavity, it’s a side angled back riding never been seen kind of cavity. If I get a headache, it’s so bad that it turns out to be spinal meningitis. If I get a divorce (first marriage-- now long gone), it’s because my husband didn’t want to be married to me anymore and ended up marrying a secretary in his office. I mean… I have never seemed to have a graceful anything in my life. And… my cancer was no different. I didn’t have your typical lump. I had a kind of indiscriminate area where there was an invasive fast moving cancer. My cancer at this point was termed an infiltrating lobular carcinoma. ILC is not your usual kind of cancer; only 10% or so of breast cancers are this kind of cancer. Naturally, I chose a different kind of cancer than the run of the mill cancer. It was par for the course. In fact, I was to learn later that I had a variant form of ILC called pleomorphic lobular carcinoma which is even more aggressive and rarer than your run of the mill ILC.
I went to my surgeon’s office; and I met with him. He was just amazed, as everyone had been, that my suspicious area had turned out to be cancer. He began talking to me about the options for the care and treatment of my cancer. Now, I am sure that all the women of the world out there are all excited about choosing their treatment options; but for God’s sake, why did I not only have to specialize in my own professional endeavors but now I had to specialize in my cancer? I remember him talking about a WLE and how they would just go back to my bionic tag and remove all that tissue and the sentinel node. I asked about a mastectomy and reconstruction. I sort of thought that this was the ticket because I had breasts that needed reconstruction anyway, so why not get my breasts reconstructed and turn this nightmare into a twofer… two for one… get rid of the cancer and get everything fixed. But, he sort of disparaged the idea of this, he used words like “this is cancer after all.” I have to admit to being a little overcome by the steep learning curve of this; and I just sort of caved in to whatever he thought. In retrospect, this was a mistake.
I also was consulting my daddy on all this. Poor ole Daddy was back in Chattanooga, TN… which is a heck of a long way from Oklahoma City, OK. Although he had done quite a bit of breast surgery in his day, he had been retired for a few years; and many of the latest procedures for breast cancer had advanced during his retirement. But many things remained the same, and he thought this WLE was the answer, too. And, I just hadn’t “come to” enough to be able to put my foot down and say that something inside me thought the mastectomy was the way to go. So, I found myself driving to the hospital with Pat one morning; and I proceeded to get the WLE on an outpatient basis. I returned to work shortly thereafter and began the process of recovering.
My incredible, gift-from-God oncologist, Dr. Aleda Toma, advised me early in the process that she thought I should have the chemotherapy. I didn’t really want it. The surgeon had removed all the "bad" breast tissue and 9 lymph nodes; the biopsies indicated that the cancer had not metastasized. I sort of thought chemotherapy was overkill; and I hadn’t had real good reports of how fun the procedure was. But my father had to get slides of the biopsies (and the biopsies themselves) to have his friends who were specialists in this area to study further back home in Tennessee. And in their study, they discovered that my cancer was one of the most lethal and fast growing cancers you can get. It was pleomorphic lobular carcinoma.
When I did a search on the internet with Pat to determine what it was, we got to a site that mentioned that most of the women of their study died within 18 months of such a diagnosis; however, current treatment was having good results. We both went cold and looked at each other with terror in our eyes. Pat began to gnaw on his finger nails over the next few days. Daddy called me and informed me that chemotherapy was not just an option… it was a requirement. And, we both struggled to keep our composure. He was all the way across the country; and I was his little girl. His health did not permit him to come to me; and I could not go there. It was tough.
I decided to have a double mastectomy; for if this cancer was this aggressive and I was lucky enough to live, I wasn't going to fear a breast again. I just wouldn't have them. Dr. Toma agreed with my assessment and even talked to Daddy about the need. So, I went in one day and had a double mastectomy. The next day I checked out. A hospital is not where I want to recover. I want to be home. Soon, I was well enough to endure chemotherapy; but I was in very weakened condition (all the previous surgeries to undo the ravages of extreme weight loss and the two breast cancer surgeries had taken their toll). My first chemo round was a hellish experience. I didn't know whether to believe that I just had a severe reaction to it or if I am, in fact, a super wuss. I had my first round of chemo. In my daring, "think I am going to be the best at everything" (even cancer); I went to work on the day of my chemo. I even went back to work the next day, but as the day wore on, I realized I must go home; I was sick.
And then the next few days are all a blur except to remember I was really sick; nothing stopped the unrelenting nausea. I got dehydrated and so weak that I had to go back and get ivs. I became so sick that my husband and two sons saw me take the fast track to looking like I was dying. And, I got a sample of what it must be like to die while your family watches. It was an ugly and hideous site; and it scared me badly. And I am still scared to this day almost three years later. Bad things happened to me at work. I was a workaholic before the diagnosis. I was compelled to work all the time. Even when I wasn't working, I was thinking about work and plotting work. And now, I needed work. And work wasn't there for me. I tried to go in as soon as I could get out of bed that first week.
What a fool I was. I fainted everywhere I went. I couldn't accept that I wasn't going to be able to work. Then my hair began falling out. I never thought I was the kind of person who would mind my hair falling out; but I did. I remember getting out of the shower one day and dancing over by my mirror (because I am a naturally happy kind of person) when I caught the sight of the skinny, bald headed sick woman; I covered up and didn’t do the happy dance again for a long, long time.
And, then it was time for payday and it didn't come; I got $38. I had run out of sick days. There was no disability. Essentially, I was laid off for the duration of my cancer treatment. I appealed to my superintendent; she said she would do something. My husband appealed to our superintendent; she said she would so something. I decided to quit going to work and fainting and still handling the stress of my job. If I wasn't going to get paid, the least I could do for myself was not die on the job. It was right about here that I decided I was not going to be a victim. I was not going to lie down and feel bad and let this damn thing and the inhumanity of those I dealt with at work get me down. Nope, I was going to somehow turn this whole thing around and make a winner of it.
Now how was I going to be able to do this? First, I had to start looking at it as if it was the best thing that ever happened to me. I had to start looking for every positive thing I could in the experience; and to make that the point of the experience instead of the daily horror that I experienced. I would look for the good stuff, the stuff you could only get by traveling this road. It was on this day, that I got up from my sick bed and I limply began to struggle through my life instead of watch it from my bed. The first thing I noticed was how worried sick my family was. So, I took charge. Though hardly able to do it at first, I got up and began cleaning and organizing my house. At first it was only picking up this or that on the floor on the way to or from the bathroom. Soon, it was cleaning and organizing the bathroom I was in… and then the closet next to the bathroom on the way back to the bed to rest for a few. Then, it was the bedroom I was staying in. And, you begin to get the picture. Not only was I beautifying my surroundings, I was getting exercise and forcing myself to get up a little more and do a little more each day. I also took on doing all laundry and cooking and kitchen clean up. It somehow gave me a sense of achievement and order in my life that seemed so out of order and control. And so, I began to take on the whole house.
A family going through the crisis of cancer treatment is a very brittle thing. We were all having a melt down on a daily basis. The family was in crisis. I took charge of the situation. I did what I do. I got busy. I began organizing a cancer education series. I was not going to be a victim of this thing. The time that followed is a blur of activity of getting chemotherapy treatments (and being knocked down from the reaction to it) and trying to be in control of this out of control situation. With the help of some fellow principals and my friend Betsy, I managed to get enough pressure on the district that they reimbursed me for my lost salary; but it was always an extreme struggle in any dealings with them. I had not endeared myself to my supervisors (one who ended up losing her position after carrying a gun on school property and the other one who ended up succeeding me to the school I was assigned when I began the cancer wars).
But, I had Betsy who went to bat for me with the district; she ended up having more than a few words talking the district personnel into letting my husband donate sick leave to me. You can read about Betsy in many other posts; but this is a perfect example of the kind of friend she is. She goes to bat for you. She attends chemotherapy sessions with you. She’s your soul sister. Eventually, my cancer diagnosis, surgeries, and chemotherapy experiences were over. The surgeries began in January, and the chemotherapy sessions ended on June 2, 2003.
I returned to work as a high school principal that summer. But, I never really had it in me again to be the driven person I once was. I was weak and my brain seemed to be diminished. During the cancer wars I learned a critical lesson. Life is not about what you accomplish or who you are or what you have, it’s all about your relationships.
For years I had given so very little to my children. When I became sick, I became an involved mother. I learned about my darling children and became a genuine part of their lives. I found that it was the most fun and challenging thing I ever did. I learned I would never scrimp on the important things again. And, to this day, the happiest part of my life always begins and ends with my children, family, and friends. I returned to my high school principalship in August after the cancer wars; I finished out that school year and had a really tough last year there. Everyone wanted me to be me again; and I just didn't have the mental capacity for that first year back to give and do and be all that I had been. And I was no longer motivated to give 70 hours a week (and couldn't physically give it anyway).
I finally was given my dream assignment as an elementary principal of an at-risk school the following year after the director of personnel insisted that I must be given this request. I took a ten thousand dollar pay cut, but it was worth every penny. The challenges I have had as an elementary principal of a chronically at-risk school have never equaled the moments of true awe and inspiration and happiness that I have experienced. Being an elementary principal has allowed me to have a life to share with my husband and children. If all the things I went through were preparation for doing what I do now, it was totally worth it.
But the tough thing about surviving cancer is that you are never quite sure. Each appointment you keep with your oncologist for six month check ups unnerves you. But then you come back down to earth, and you realize that any moments you get to live life are simply gifts beyond your deserving; and you feel driven to make a difference so that you can show yourself and God that your survival was an important and worthwhile thing.
I tend to live life in an attitude of gratitude and have faith that any travesty I am experiencing is there for some greater good. When I forget this, then my friends and family remind me. And, it’s made all the difference. In the attached video if you choose to view it, you can see what I looked like 5 years ago. I made my poor husband videotape me because I was going to survive this cancer episode and look back on this tape remembering that I thought if I could capture the moment that I could reflect back on the experience in the years to come and not forget the great things I learned from the Cancer Wars. I had to take Marinol (the pill form of marijuana) because my chemo experience was just one big nauseated moment after another; and no medicinal cure for the ravages of cancer should ever be denied to a patient undergoing a treatment for a life threatening situation… but it made me a bit goofy.
Download JanChemoApril2003.WMV
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