SPECIAL OFFER: - Limited Time Only!
(The ad below will not display on your printed page)
It started with swelling and tenderness in my left breast. My mom and my sweet firefighter husband, Stephan, reassured me it was probably nothing. But I was thinking, "I've got inflammatory breast cancer and I'm going to die." IBC was the first thing that entered my mind -- I made an instant connection.
This was May 2010, and in March I'd read Kristin Hannah's novel Firefly Lane, in which a character gets this rare but aggressive cancer. I'd never heard of IBC. But I must have taken the author's postscript to heart. She urged women to add IBC warning signs to the list of symptoms to watch for and not be afraid to ask questions if something felt wrong. Now something did.
I'm generally not someone who follows her gut. I was a certified public accountant before becoming a sixth-grade teacher, and I'm the analytical type. If the two people I trust most think I'm overreacting, I normally figure they must be right. But deep down, the book and my online research convinced me I had reasons to be concerned. IBC dimples the skin of the breast like an orange, and that's what mine looked like in spots. It tends to strike younger women; I was 34. It discolors the breast with patches of red, pink, or purple, and I had a barely there red tinge that my mom and Stephan couldn't see. I knew my body and nothing anybody said could calm my fears.
Because I was 16 weeks pregnant, I went to my ob-gyn, who ordered a let's-take-a-look ultrasound rather than risk exposing the baby to mammogram X-rays. I heard one of the staff members say there was a swollen lymph node near the collarbone and I panicked.
Because of the book I knew that a swollen lymph node in this spot was a signature symptom. And what I was reading online was horrible: Everything made it sound like IBC can't be treated and you're a goner if you have it. I don't like questioning professionals but I couldn't help it. I said, "I read this book, and I really think this is what I have."
The ultrasound doctor seemed interested at least. But the breast surgeon had "hormonal pregnant lady alert" written all over his face. They both thought the swollen nodes meant an infection -- especially when the redness, swelling, and tenderness seemed to improve with antibiotics. But I was freaking out. The worst part of this ordeal was being absolutely convinced I had a fatal disease while my family, friends, coworkers, and doctors -- anybody who could help me -- thought I was crazy.
Stephan did what he could to put my mind at ease. He called the surgeon's office several times to tell the doctors I was so upset I couldn't eat, sleep, or function. On one call, I got on with a doctor myself. "I know I'm right and no one is listening to me," I said. "I need something tangible." I pushed so hard that they eventually suggested a biopsy of the area that was most dimpled, just to convince me I didn't have IBC. When the doctor called with the results, his first words were, "We're sorry."
Things changed completely when I met my amazing oncologist. He saw the dimpling in my skin and knew in one second I had IBC. "I know what this is, I know how to treat it, and we'll start right away," he said. For the first time I felt there was hope. He said that chemo actually works well against this cancer, and its molecules are too big to cross the placenta, so it wouldn't harm the baby. I was almost happy to start chemo because it meant something could be done. While sitting in the infusion center with a muffin and my favorite magazines, I tried to think of my treatments as a relaxing break. The oncologist paced the doses so they were completed just in time for my healthy baby boy, Charlie, to be born at full term.
After the birth I had a different kind of chemo and a double mastectomy -- I just wanted the cancer out of me. Tests showed the cancer hadn't spread; the oncologist was amazed and said it was the best possible outcome. But I wasn't surprised: The part of me that intuitively knew I had IBC also knew it was gone.The Facts: Inflammatory Breast Cancer
What it is: An aggressive form of breast cancer in which cancer cells block lymph vessels in the skin of the breast. It accounts for 1 to 5 percent of all breast cancers.
Symptoms: Tenderness, swelling, and swatches of red, pink, or purple on the skin. Fluid buildup under the skin can cause pits and ridges.
Treatment: In most cases, chemotherapy to shrink the tumor followed by a mastectomy to remove it and radiation to prevent it from returning.
Info: IBC Foundation, eraseibc.com
Life was looking up in October 2010. I had lost more than 40 pounds in the past year and was going to the gym three or four times a week. At age 30 I felt in better shape than ever before. I'd just been promoted at the Detroit-area public library where I worked and had applied to grad school for library science.
When I got a nagging cold and started to feel tired, I thought maybe my 90-minute gym sessions were too much. But easing up on workouts didn't help. In fact, over the next several weeks I felt so fatigued it was hard to do the simplest things. Walking felt like slogging through waist-deep water. Just climbing the stairs to my parents' house (where I lived to help care for them) left me drained.
At first I didn't want to believe anything could be wrong. But arriving exhausted at my desk one day, I faced reality: That morning I'd needed my mom's help to get my shirt over my head and was forced to lift my weak legs into the car with my hands. I called my doctor and made an appointment.
But first I wanted information. Like any aspiring librarian, I tried to research thoroughly, making a complete list of my symptoms and plugging them into reputable sites. A lot of possibilities came up: lupus, rheumatoid arthritis, Lou Gehrig's disease. Then I came across information on myositis, a rare autoimmune disease that progressively weakens muscles. Some forms of it clearly didn't fit me -- like the ones that strike older people or children. But one form did: polymyositis. It tends to affect young women and progresses with symptoms that sounded like mine.
When I saw an internist a week later, she asked me about any family history of autoimmune disease and ordered tests. Maybe I should have spoken up about my suspicion of polymyositis, but I didn't want to tell her how to do her job. But when the tests came back, my self-diagnosis seemed on target.
Blood work found levels of a muscle enzyme six times higher than normal -- a sign of polymyositis. My primary care doctor said such critically high levels could shut down my kidneys, so he sent me to the ER for an emergency IV to flush the enzyme from my blood. I wound up in the hospital for 12 days. More tests confirmed what I feared: I had polymyositis.
For three months I was treated with high-dose steroids, two drugs to suppress the immune system, and IV infusions. Nothing helped and my arms, legs, and shoulders got even weaker. Doctors had told me to expect this, but I became angry and depressed that I'd gone from being this poster child for good health to a person who couldn't get around without a walker or wheelchair.
Thinking about my mother, a 10-year cancer survivor, and my nieces and nephews helped give me strength. I also found some help on Facebook. I know -- not exactly a source you'd recommend for a kid's term paper let alone researching your own potentially life-altering disease. Yet online support groups for polymyositis gave me insight into everything from test results to medication. And when I was at my lowest point, thinking of my Facebook community helped bring me back from the edge. "If those brave people can wake up every morning and face their disease head-on, so can I," I thought.
My diagnosis was just the start of a long, tough journey. My online community has become a support system and a real source of essential information. For example, I learned from some of my nearly 50 myositis friends on Facebook that my test results may indicate a higher risk of having other autoimmune diseases.
Today I feel I've rebuilt about 90 percent of the strength and fitness I had two years ago. I can lift laundry and walk up stairs, and I'm back at work and studying for my master's. Some days I'm achy and sore, but that comes with the disease, and it's what I'm used to now. I've learned I have to believe things are getting better -- and they are.The Facts: Polymyositis
What it is: A disease in which the immune system attacks healthy muscles, making them progressively weaker. Though most common in women in their 30s, 40s, and 50s, the disease is rare, affecting only two to 10 people per million.
Symptoms: Weak muscles, especially in the hips, thighs, and shoulders, along with fatigue, tender joints, and difficulty swallowing. Symptoms vary and can come on slowly, so polymyositis can be hard to diagnose.
Treatment: Corticosteroids or other drugs to suppress the immune system. Doctors may also use therapies such as intravenous immunoglobulin to supply the body with healthy antibodies.
Info: The Myositis Association, myositis.org
I stepped out of the shower that January day in 2010 and grabbed the home pregnancy test I'd taken minutes earlier. It was positive -- and I was thrilled. I was nearly 30 and ready to take on the role of pregnant lady even though my boyfriend, Jesse, and I had our problems.
That instantaneous love for my unborn baby was about the last normal thing that happened in my pregnancy. Within a week I knew something was terribly wrong. First I had such bad nausea and cramping that my mother took me to the ER in Rochester, New York, near the small town where I live. The ER doctor said I just needed to sleep, drink lots of water, and wait for the morning sickness to pass. Mom hugged me tight. "It's going to be fine," she said, but I wasn't convinced. My body felt strangely heavy. "Mom," I said, "something's not right."
After ordering blood tests several days later, my family doctor said everything looked great. She told me I needed to stay calm, yet I got more and more anxious. Just five weeks into my pregnancy, my belly already bulged. My bones and joints hurt, my blood pressure was climbing and the fatigue and heaviness were escalating. This wasn't like me. I'm fit and active: A year earlier I'd run a marathon.
Then one morning in March, at six weeks pregnant, I noticed something weird: I had wide purple marks all over my body and I could see my veins through the tissue-thin skin. Stretch marks shouldn't appear that early, but my family doctor and ob-gyn couldn't come up with any other explanation. They were more concerned about my rising blood pressure, high blood sugar, and excessive weight gain.
At every step I pointed out my unusual symptoms to anyone who would listen. But even when other oddities cropped up, like the slight hump that developed between my shoulder blades, nobody believed there was a problem. Every expert was sure this was just an extreme, but normal, pregnancy. So I began to doubt myself. Who was I to argue?
Then I googled "abnormal stretch marks." And there it was: a picture of a woman whose body looked just like mine. She had a rare hormonal condition called Cushing's syndrome. Symptom after symptom matched. But when I brought it up, my doctors and nurses thought extreme pregnancy was still more likely than a seldom-seen disease. One nurse even scolded me for doing research online, saying, "That will scare any young mother."
My symptoms only got worse and I was hospitalized twice for complications, including high blood pressure and dehydration. I sought a second and third opinion, but nobody saw Cushing's. Finally, one night early in my eighth month, I felt so weak I could hardly walk. Somehow I managed to get into the car and drive to the ER. My blood pressure was so high that doctors were worried my baby wouldn't make it. This time they brought in an endocrinologist. Maybe it helped that this doctor was also eight months pregnant: The difference in our appearance was stark, and she confirmed that Cushing's was a possibility. That's when every doctor jumped into action. They induced labor mainly because of concern about my blood pressure. My beautiful baby, Sylvia, was born three and a half weeks premature.
With my baby safely out, I got a CAT scan. It showed that a tumor on my left adrenal gland had been causing all my problems. It was Cushing's. Doctors aren't sure why the benign tumor grew, but it's possible pregnancy triggered it. An endocrine surgeon took the diseased gland out two days after I gave birth. My other adrenal gland had shut down, so I began steroid-replacement therapy to keep my hormone levels from crashing. About two years later the remaining adrenal gland started functioning normally again, but my body is still disfigured and I haven't been able to lose much weight. Jesse and I didn't survive the strain of dealing with the disease and split up after Sylvia was born. I still don't feel comfortable in my own skin. But I'm so glad my daughter is here and she's healthy. I'd go through it all again for her.The Facts: Cushing's Syndrome
What it is: Overproduction of the stress hormone cortisol, usually from a tumor on the pituitary gland (at the base of the brain) or the adrenal glands (above the kidneys). Adrenal tumors are rarer, affecting only two to four people out of a million, but they're much more common in women than men.
Symptoms: Weight gain, fatigue, high blood pressure, high blood sugar, loss of emotional control, a round face, a fatty hump between the shoulders, stretch marks, and thin skin.
Treatment: Surgically removing tumors and sometimes glands. Replacement hormones may be needed if glands are taken out.
Info: National Endocrine and Metabolic Diseases Information Service, endocrine.niddk.nih.gov