Sandi's Survivor Story - Conquering the Enemy: IBC

Let the little things go, and tell them that you love them!

Sandi Johnson went for a mammogram and came out with a diagnosis of Inflammatory Breast Cancer. She endured a range of treatments: chemotherapy, surgery, radiation. She owns a gym and is fit, and she has served as the president of her school board. Sandi and her network of support made it through the crisis, and she is now holding steady. Here is Sandi Johnson's breast cancer survivor story.

Surviving Inflammatory Breast Cancer

Sandi Johnson
Sandi Johnson. Photo © Harlem School District, Machesney Park, IL

Sandi Johnson has faced the sledge-hammer diagnosis of Inflammatory Breast Cancer. With the support of her family and friends, school board members, and healthcare team, she has survived grueling treatments, as well as an episode of metastasis. Through it all, she kept a journal, and stayed persistent and positive. Her story starts with a compassionate and concerned mammogram technician, who advocated for Sandi and started the ball rolling.

Sandi is married to her husband Gary with two sons, Jake and Jordan. Sandi and Gary own and operate the The Asylum Gym in Machesney Park, Illinois, and Sandi has been President of her local School Board for the last 10 years. Her journey is chronicled online at her Caring Bridge web site.

Sandi's Breast Cancer Diagnosis

Sandi Johnson and Zometa
Sandi Johnson and Zometa. Zometa Infusion, Photo © Dr. Hoskins
Age at diagnosis: 50
Type of breast cancer: Inflammatory Breast Cancer (3” by 5” nest/sheet) and Infiltrating Ductal Carcinoma (3 tumors=2 0– largest approximately 3 cm)
Lymph node status: 5 out of 12 positive nodes
Tumor Description: Stage IV, Grade 3
Surgery: Bilateral radical mastectomy and sentinel lymph node biopsy
Treatments: Chemotherapy with ACT (Adriamycin, Cytoxan, Taxotere), Neulasta injections – 5 months. Radiation of surgery site – 7 weeks.
Follow-up Hormone therapy: Femara.
Treatment for Later Metastasis: Radiation – 5 additional weeks, monthly dose of Zometa given intravenously (see photo).
Diagnosed on: August 13, 2007
Family History of Breast Cancer: None

Something is Broken and Something is Wrong

I knew something was wrong. I had a broken (saline filled) breast implant that I intended to, eventually when I had time, have replaced. In the meantime, I could tell progressively, that something was not quite right besides the break. Unfortunately, once doctors had diagnosed a broken implant, they just did not have any interest in investigating further. My request for an MRI was denied by my insurance company, I believe, because they felt I might be attempting to scam them by getting my broken implant replaced at their expense. I was unable to get help at every turn and it was upsetting.

The Shocking Mammogram

Finally, by the time my yearly mammogram came due, the technician could tell merely by looking that I was critically ill. Within 16 hours, I was on a biopsy table with a room full of people who were, quite obviously, seeing something that none of them had seen previously. It was an ominous moment for me. From there, I was swept up in the whirlwind of diagnostics, doctors, diagnoses, and desperation. It was determined that I had Inflammatory Breast Cancer as well as your garden variety Infiltrating Ductal Carcinoma with lymph node involvement. My cancer had already spread to my 5th and 6th rib on my left side, my right hip and pelvis, my thoracic, cervical and lumbar spine. This was Stage IV cancer.

Swept Away

Sandi Johnson's First Chemo
Sandi Johnson's First Chemo. First Chemo, Photo © Clinic Staff

The approach to my treatment was done with a sense of great urgency and speed. I began 5 months of radical chemotherapy treatment, and then bilateral mastectomies, followed by 7 weeks of radiation therapy. The surgery to remove my breasts and the cancers kept me hospitalized for 11 days. But I nearly lost my life on two other occasions during a 2-month period. I was hospitalized for 6 days with a condition called neutropenia in which my white blood count had fallen dangerously low making me susceptible to every illness imaginable. I was quarantined in an area in the hospital where I could not see anyone other than nurses and doctors who were suited up in what amounted to space suit-looking outfits.

The Blood Clot

The other time I nearly died was when I developed a blood clot in my jugular vein. I was hospitalized December 23, 24, 25, 26 and 27. The Christmas that wasn't. This was terrifying ... an indescribable hell. Many times I felt death would have been the easier option. I spent 6 months in an, much of the time, incoherent drugged stupor attempting to combat cancer as well as its treatment effects.

Given A Short Sentence

I understand that the survival rate for IBC at this stage is 25% making it for 5 years. I had begun to build friendships with 3 other women having IBC who have already died since the time I was diagnosed. I, myself, was told I could expect to live anther 6 months. Six months! This just couldn't be! I'm vibrant, I'm healthy, I'm fit ... how can I be so sick? How can I look in the mirror and see a woman who looks healthy ... sometimes rather sexy ... that same woman who doctors say may no longer walk among the living in a mere 180 days. It just cannot be possible. I refuse to believe it ...

Off to Visit The Wizard

I gather my family and we travel up to the University of Wisconsin at the Breast Cancer Clinic in Madison, Wisconsin. The experts...or rather in my hopeful, humble opinion, the Wizard of Oz. They are going to tell me this business of only having 6 months left on my life is ridiculous. They're going to fix me. After 2 hours with a team of experts at UW/Madison, I am sent home with an apology...they could do nothing for me. The 45-minute drive home was as profoundly devastating as the drive in had been promisingly hopeful.

Turning Point – Decision Time

On that trip home, I decided to go back home to Rockford, to the one most positive thinking oncologist I had met to date. There would be no more seeking out second or third spirit would surely break if I received another apologetic prognosis. It's frightening! I write, since the beginning of this ordeal, in a diary format on my Caring Bridge website most every day which provides people who care for me an insider’s view to my life as a cancer patient. I have been heralded for what has been called my “raw, in your face, truthfulness” in my writing. I am proud of this fact. My Caring Bridge website has received almost 190,000 hits in 16 months.

Support Network

Jake, Sandi, and Jordan Johnson
Jake, Sandi, and Jordan Johnson. Photo © Gary Johnson
The support I’ve had from family and friends (and an entire community) has been so moving and something I could not have survived to this point without. I have a husband, Gary, and two sons (Jake, 21 and Jordan, 17) who have been incredible; they’ve done their share of suffering as well. Gary and I own a gym, although I run it while he has works in administration for Blue Cross Blue Shield, also my healthcare insurance provider. (Yikes!) It’s been difficult. I have been school board president of our local school district for the past 10 years and have made many friends who have come out in support of me.

Be Your Own Best Advocate

I cannot stress enough the importance of early diagnosis. More importantly, be your own best advocate. If you sense something is wrong, you need to PUSH your way to answers. If I could go back, I would not have settled for doctors’ reassurance that 'everything was fine' just because they are smarter than me … they have more education -- they must know what they are talking about … they must know better than I do. If you are not happy, keep going, keep pushing. You have the right to a mammogram, even if it is not time for your yearly. If you still feel uneasy, ask for an ultrasound. If you still feel uneasy, ask for an MRI. If asking doesn't work, DEMAND. You have the right to be satisfied with the answers you get from your doctors.

A Metastatic Revelation

Four months after my first round of treatments were over, it was discovered that my cancer had spread to my hip and pelvis on the right side. My feeling was that I was truly doomed. Spreading? Already? I walked around in a daze for a number of days before I realized, finally, I am in for the fight of my life. I want to live. I want to see my 11th grader graduate from high school. I am not ready to sever the relationships I have with my two children because of cancer. All of my thoughts, all of my energy...all of my everything would now go toward whatever effort was needed, however selfishly, to live. It was a true revelation.

Holding Steady

Sandi Johnson in Radiation
Sandi Johnson in Radiation. Photo © Clinic Staff
Five months ago, I finished the rounds of radiation necessary to address these new cancer sites. Since then, diagnostic tests have revealed while I still have active cancer in my 5th and 6th ribs of my left side, my thoracic, lumbar and cervical spine, right and left hips and pelvis, it's not moving for the time being. I think of this as a battle of wills...what is that bastard cancer thinking now?...what is it planning next? I must stay a step ahead...a lifetime ahead.

New Implants

I spent the next four months receiving saline injections every three weeks into the valves of tissue expanders that were implanted during my mastectomy surgery. These valves are attached to "skin stretchers" that would, quite obviously, stretch my excruciatingly taut skin on my chest so that hopefully, enough space could be created to accommodate breast implants.

New Challenge: Lymphedema

During this time, I also developed an incurable condition known as lymphedema. With the disruption of my lymphatic system, my left arm lost its ability to process fluids. No one could have prepared me for the seriousness of this disease and the deformity associated with it. At times, my left arm is 7 to 8 inches larger than my right arm. I often feel like a physical freak and in moments of self-pity, refer to myself as a cross between Popeye and Frankenstein.

More Surgery, More Therapy

Last week, I had surgery that included 1) removing the stretching equipment that had been implanted in the earlier surgery, 2) removing interior scar tissue, 3) excising interior breast/muscle tissue, 4) inserting gel implants and 5) removing a 2" by 8" flap of skin on my back that had healed improperly from the earlier surgery involving skin grafting. I am also waiting for my insurance to approve paying $8,000 for a lymphedema therapy machine that will help keep the swelling down in my arm.

Advice About Health Insurance

Cancer. It has forever affected me physically and psychologically, not to mention, financially. Life is considerably more difficult financially than I could have ever expected ... especially having good insurance. I think it's unfair that cancer patients should have to suffer in that aspect as well. BUT ... I will take living in any financial condition, rather than not living at all. In fact, let me be destitute, just let me live. The advice I would give to all who are shopping for health insurance is to ask yourself one simple question: Is this the insurance I'd want to have, if I had cancer?

Still Here, Surviving

Sandi Johnson with son Jake
Sandi Johnson with son Jake. Photo © Jordan Johnson
I have followed the journey of 15 IBC patients since I began my journey. As of last week, sadly yet miraculously, I am the only one of those still living. I thank God every day for I know that each is truly a gift. I ask myself 'why?" Why do I continue to survive while so many, many others do not. Then I am reminded: "Ours is not to wonder why ..."

Thankfully, Looking Forward

Sandi and Gary Johnson
Sandi and Gary Johnson. Photo © Jake Johnson
Finally, 2008 is behind us and 2009 has just begun with the freshness of a brand new day … a time for looking forward to the good things life has to offer. I’m glad to be alive. Life was forever changed with my cancer diagnosis but I’m thankful just the same. Thankful for God, and my family and friends … especially all those that have given me so much support during this long, hard road I’ve been traveling…making it so much easier to bear.

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