-By Patti B
As I drove up the gravel drive to my little girls home, my stomach, and mind were churning, both with anxiety and fear of what lay ahead. I turned the car towards the big cattle gate and saw her standing there, and could tell immediately she was in intense pain. Her five Labrador sat quietly by her side as she motioned for me to get out of the car. Normally, she would have opened the gate, but not today. She couldn’t. My own heart was pounding so hard I could hear it in my ears....I wanted to bawl, to run to her, to cry, but knew I couldn’t. I had to be strong. Oh Lord, I will never forget that moment as long as I live.
Standing in the hot sun in the dust of the farm swirling around us, Tina said, "Do you want to see it? Not waiting for an answer she opened her blouse and showed me her doubly swollen right breast with blood still oozing through the bandages where just hours before three separate biopsies had been taken. "I can’t lift my arm or take a deep breath it hurts so bad". I wrapped my arms around her, and there we stood. Two human beings, five dogs, and a sea of emotion that only I feel today the dogs could feel at that moment. They were still. Standing quietly. You don’t ever see that.
Thus began ‘our’ journey through the maze of Inflammatory Breast Cancer. Tina had laid out all the documents she had received from her oncologist. Places for her to sign, places for me to sign so the doctor ‘could’ talk to me (the wonderful HIPPA law you know). The ‘trial’ documents explaining that the drugs she would be taking were a "trial", were Carboplatin, Taxol, and Herceptin. The side effects sounded brutal, but my little girl made a statement that day that carried her forward, and she never looked back.
"Mom, these drugs are either going to cure me or kill me. It’s already in my liver so....."
The very next day she was sitting in a recliner in a private room starring wide eyed at me. She didn’t take her eyes off of mine, because in my heart I knew she was waiting to see my reaction to what was going to begin. "I have kept my body away from drugs all my life and look at this. Look at all the poison." Bending down, I kissed her forehead and told her I loved her, and she was strong. As the first of the drugs began to trickle from the overhead bag, one shiny tear slid down her face...."I hope I can be, but more, I hope you can be strong." My inner voice was screaming "Why not me God, why my little girl? Please! I know I am being selfish, but Please don’t take her from me".
Tina had begged me the day she was diagnosed, "Mom, if you never write another word, you have to write about Inflammatory Breast Cancer. Nobody has heard of it, and that is just stupid. So, I began to write. But, even though my lifelong reporter connections were strong, no one wanted to print anything about IBC. "We don’t want to scare people...." was the constant reply. Anger took over at that point. My years as a reporter told me that maybe it was time to step up to another medium. Television. Totally out of my comfort zone, I marched into studio after studio in the Seattle area, only to be met with the same...." we don’t want to scare people".....until I found KOMO TV and the staff that have since made history with there continuous stories on IBC. The biggest one, which went viral on the internet, was picked up by CNN, MSNBC and Good Morning America, was "The Silent Killer". The national reaction to that piece took down KOMO’s servers and 20 million hits later they had to bring in more servers to pick up the overload.
We were off and running. That was May, 2006. Yes....it took a year and a half of constant badgering (between staying with Tina while she fought the effects of the chemo) before the nation started waking up. Women started waking up I should say, but not the medical community sadly.
In June of 2006 I received a call from Dr. Massimo Cristofanilli, a Houston doctor who said, "we need to talk. Your story has opened the flood gates, and I think we have an epidemic of IBC". I quickly replied, "no kind sir, it isn’t an epidemic; it’s just that women from all over the ‘world’ have found there is "A" doctor who they can turn to. All the women he began seeing had been either mis-diagnosed or diagnosed correctly but then not treated correctly and were in a very bad way by the time they got to him.
"I am going to start an IBC clinic," he said that day. And he did. In October of 2006 he and, Dr. Tom Buchholz began a journey which was the first Inflammatory Breast Cancer Clinic in the world.
My beautiful daughter was fighting for her life. Eight months of chemo and then the news the cancer couldn’t be found on a PET scan in April of 2004. We were ecstatic to say the least. During those eight months we had taken a dream cruise, just the two of us to the Mexican Riviera. "One bald chick and an old broad" she said laughing on night one of our sea extravaganza....."and next stop we swim with the dolphins".
I would like to say here, now, I don’t have to tell you a mothers feeling that her daughter might die from a condition you have never heard of, is an emotion no one should have to live through. But, the readers of this piece need to know how deeply that emotion is, even if you, the doctors cannot see it. It lies beneath a plastic exterior that most see past. Mothers and Fathers ‘feel’ they have to be strong, showing little emotion to bolster the child that watches for any little crack in the only armor they have, which is their parents, their support system, whoever they are. In this case, it was me. Thank God for my Icelandic heritage of stoic outward composure. Be very afraid when you see that, for if it crumbles, it may come out in a fury that you would not want compromised.
My outward calmness was shattered in February of 2005 when Tina started saying, "my shoulder blade hurts so bad...can you rub it for me." The liver mets had returned with a vengeance and back on full chemo she went. Only now I knew more. I had researched, read until my eyes blurred, and knew Tina needed the best doctors who had treated many cases of IBC. I found them. But, Tina rejected my plea of getting a second opinion. Her oncologist was trying *off the wall* treatments that not one specialist had ever heard of. My Icelandic armor got stronger. I stepped in where I felt I had to. But was not met by indulgence from her doctor. I was met by confrontation, by indignation, by pure unadulterated pride. Who was I to question her opinion? I immediately became an outsider and my hands were tied. The doctor wouldn’t talk to me, and Tina felt I had overstepped my bounds. At a loss ... I turned my anger and frustration to other women who might benefit from what I was learning. Which at that time is when Dr. Cristofanilli came into the picture. Inwardly I prayed if I told Tina about what I was learning, she would lean on me and listen. But, it wasn’t to be, although I shared everything I learned.
I told her about the doctors across the country that were misdiagnosing women for months and months, then sadly the women died because they waited too long...they didn’t wait too long, their doctors did. One woman was told, "You had a double mastectomy 4 years ago, you can’t possibly have IBC, you have no breasts"....another young nursing mother was told, "you are too young and this will clear up after you quit nursing"....(she died before she quit nursing). An eighty-year old woman called me crying one day and said, "I can’t possibly have mastitis, I haven’t nursed for 50 years"....she only lasted six more months from her first phone call to me.
What motivates me today many ask? Why do I stay and what pushes me forward?
The misdiagnosis of over half the women that I talk to is still happening. Trying one antibiotic then another, then another to stop the swelling, the blisters, and the bleeding in some cases, still continues. The biopsies (if they are even done) are not read correctly, and come back "unknown etiology," thus wasting precious time, and sadly lives in too many cases.
With the advent of so much availability on the internet, women are learning what the signs and symptoms of IBC are and they take there findings to their doctors. Some, but not all doctors, blow away these concerns, and tell them, "get off the computer, you will only scare yourself"....(sound familiar?)
I am not exaggerating when I say constantly I hear from women, and sometimes their loved ones who say, "how do I get the doctor to listen to me? Three rounds of antibiotics and I /she is still so swollen she can’t move". If the women and their loved ones can find the information on the computer....HELLO...why are the doctors digging their heels in and shutting their minds to what they are seeing up close and personal. This has to stop. Please hear us, all of you in the medical community. Women are dying at an alarming rate, and not because (as the medical journals say) they wait too long to get medical advice, but because the very people they put their hope and life into the hands of...the doctors, are not listening to them.
This reminds me of earlier days, which I do remember because I have lived long enough to be a part of the "early days"; if women had an ailment, any kind of ailment, the doctors would say, "calm down, take a pill, relax, it’s all in your head." I can personally attest to my first time in this arena with a blood clot in my groin (iliac) and was told by the physiatrist they brought in, "There isn’t anything wrong with you. The pain you are experiencing is probably stress related."
Physicians, listen to your patients. With Inflammatory Breast Cancer, even if you don’t believe its possible, RULE IT OUT FIRST. Take a biopsy, have it read by a pathologist that knows he might see IBC. Pretend its your car and you are going on a long journey. Don’t you check the brakes before you leave? RULE OUT THE WORST FIRST.....not last. Then you never have to look in the rear view mirror and wonder if you made a bad choice.
I lost my beloved daughter Tina on August 29, 2007. She worked right up until three weeks before she passed away. She left us the same way she had dealt with everything she had been through, with her chin in the air and always saying, "I hope what has happened to me, and the drugs I have taken, will help science."
And one last thing she asked, I will continue and keep my promise. "Science and research are great Mom, but do something to help the women, if you can." I promised.
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