From Health magazine
It was a long night, and Susan Niebur was feeling low. Normally, this working mom in Silver Spring, Md., can keep a shocking number of balls in the air and still smile. She’s a physicist who works part-time as a consultant to NASA; an at-home mom to Matt, 1, and Andrew, 3; an animal-rescue volunteer; and a daily blogger. But Niebur, 35, is also a full-time cancer patient, and one night last fall her characteristic attitude of resolve and optimism failed her. After nearly six months of chemotherapy, the treatment’s side effects—which are cumulative—were brutal.
She was in constant pain, couldn’t sleep or eat, and had just developed a case of temporary nerve damage that rendered her unable to walk or even get out of bed without help. So while her husband, Curt, 35, and their little boys slept, Niebur did the only thing she could do to feel more in control of a terrible situation: She booted up her laptop, logged on to her blog, and wrote about what had happened earlier that night.
Because the meds weren’t taking away the pain, my husband lifted me into a hot, steaming bath (my legs still aren’t working) to relax the muscles. The pain dissipated a bit, and I began to feel better. Then, after the water cooled off, we added bubbles and a baby. I began to gently wash his back with soapy hands, and he looked up at me and giggled. I giggled back, briefly, and then, as he turned away to splash a bit, it struck me again. This is the baby we waited for. This is the last baby I’ll ever have. This is the baby I’m living for. And I began to cry. Great big gobs of tears, actually, and I turned on the water again so no one else in the house would hear it. I’m not good at talking about these feelings, you see, and I really still don’t want to talk about it, but, in truth, I am sad.
Six months earlier Niebur had been diagnosed with inflammatory breast cancer, or IBC, the deadliest form of the disease. The best hope for survival is early diagnosis combined with aggressive treatment: chemotherapy, followed by mastectomy, followed by radiation. It’s a devastating regimen that lasts for nearly a year, and one of the ways Niebur copes is by writing it all down—her research, her experiences, her fears, her hopes—and sharing it through her blog, Toddler Planet.
Next page: The first hint of trouble
Comments (17)
A special thank you to Margaret Renkl for writing such a excellent and thorough article about everyone’s friend …Toddler Planet a/k/a Susan. Susan has been an inspiration to everyone she comes in contact with. We love you Susan!
Marilyn ‘Mare’ Kirschenbaum
Vice President
Inflammatory Breast Cancer Foundation
http://www.ERASEIBC.com
Thank you for such a beautifully written article about another amazing woman forced to fight this dreadful disease. Articles like this bring to light the struggles that so many that are stricken by Inflammatory breast cancer endure day after day, yet somehow after the months of darkness come out even more amazing. While at the same time informing the readers about the importance of early detection of Inflammatory Breast cancer. THANK YOU! From another IBC survivor.
Ms. Renki, There are stories, and then there are stories.
Your detail and journalistic touch to Susan’s journey, and her brilliant mind and spirit, (although tearful), is the best I have read in a long time.
To our wonderful friend Susan we all thank you for ‘telling it like it is’,
and educating the masses. Thank you.
Patti Bradfield
President
The Inflammatory Breast Cancer Foundation
http://www.eraseibc.com
As a fellow IBC’er – THANK YOU!! to Susan and to Ms. Renki – the word is getting out, woo-hoo :)
Ms. Renki,
Thank you so much for your article about IBC. I am a survivor of IBC. I just completed five years since my last chemotherapy treatment. I cannot imagine having to raise two small children and go through the IBC ordeal! My heart goes out to you, Susan. You are a real trooper!! I, too, have felt compelled to let others know about this lethal form of breast cancer. In an effort to spread the word about IBC, I have written a book which chronicles my eleven months of treatment. The book is entitled “The Bumble Bee Miracle – A Story of Survival from Inflammatory Breast Cancer” You can review it at the website at http://www.thebumblebeemiracle.com. It is also available online at amazon.com, barnes&noble.com, borders.com and xlibris.com.
Nina H. Anderson
Beautiful story, beautifully written.
Susan, and they say it doesn’t take a rocket scientist. :-) Thank you for sharing your story & your blog.
Your IBC sister,
Jenny
Minneapolis
I am so glad that Susan is now doing so well. This article was beatifully written and I hope that more people will now be aware of this deadly disease. From an IBC surviror.
My own thanks to Susan and Margaret for creating a wonderful article about a disease many of us never knew about until we were diagnosed with it. Please continue to educate your readers about critical life issues that few people know about ! I am a 2.5yr Survivor Sister to Susan, with IBC stage IV (metastatic disease) but hope to give other women HOPE that they can survive and THRIVE even after such a tough diagnosis… Thanks AGAIN & AGAIN.
I am so thankful for this inspiring story of strength and love. Yesterday, I had my first breast ultrasound. I am only 31 and my doctor felt that the ultrasound was the least intrusive exam for my age. The ultrasound reveald nothing. I am still in a lot of pain. Although my physician prescribed antibiotics to fight, what she thinks is mastitis, I will ask to be tested for IBC. Your article was extremely informative. Thanks for sharing your story, Susan. My prayers are with you and your family.
Thank you, Health, for this amazing article. Since the article came out, I’ve met so many more moms with cancer that I decided to set up a support site, just for mothers with cancer, that anyone is welcome to access to learn more about how moms with cancer cope and to offer support to those going through it. We have 16 women, mothers of babies through college students, who have or have had Stage 1 – Stage IV cancers. All are strong, amazing women. All are fighting cancer with grace and strength, and I invite you to stop by anytime and meet us. We’ll be happy to see you.
The new site is http://MothersWithCancer.com.
A grand and thankful article spreading the word about the rare and dreaded disease IBC. Our angel Nancy passed away 6 years ago at age 44 after a 3 long year battle with numerous treatments but never giving up, especially about letting others know about the importance of early detection and treatment. As was her wish, I’ve had a community TV
production made with more than 300 copies distributed to many states and at least 6 foreign countriess and I will continue distributing DVD’s just as long as requests are received, no charge, just your mailing name and address required for a copy.
THE RESEARCH AND DRUG DEVELOPMENT OF ‘cancer’ IS NOT GOING IN THE RIGHT DIRECTION, ANY WAY.
CANCER IS NOT A DISEASE AT ALL, BUT ..
Would like to have Emmett Gruici address to request a copy of the DVD.
Thank you for this wonderful story about IBC. I am an IBC survivor as well. It amazes me that when I was diagnosed in March 2006 there were few articles, now only a few years later there are many. This is wonderful news for other women who may not know what is happening to them. You think you are alone and then discover you are not. The most difficult for me was hearing my neice say “My Aunt doesn’t have hair because she is sick, but it will grow back”. Today when I complain about my hair I have to laugh and say – ah, I could have no hair.
IBC Survivor
I have already survived 25 years after lumpectomy and radiation treatment for Invasive Ductal Carcinoma. The lump was found in my own shower, and after a biopsy I resorted to running away for about 6 weeks to try natural therapies, and then read about the success rate of lumpectomy & raidation also my lymph nodes were removed but were unaffected. After 25 years, I am a survivor. About six months ago I noticed a pimple on the nipple, I thought it was a strange place to have a pimple accepted it must have been a spider bite in the middle of the night, I picked at it and applied salve. A month later I was feeling a fever and thought I had flu went to my bed and after a few days I noted that my left breast ( same side as before) was swollen, red and very itchy, in fact it was all mottled like an orange and the nipple which has always been inverted had some white flaky stuff which when I picked or tried to clean it actually bled a bit as the nipple seemed to split from the pressure. It was so itchy and I was about to go to a doctor thinking I had an infection of some sorts, when it was advised I apply Watkins Medicated Ointment to sooth the itch and by golly it worked and the itching stopped and the swelling went down and the size returned to normal but still had some white milky residue from and around the nipple. So I went to a GP and asked him if it could be Pagets he did a manual check of the breast and said he did not think so but advised I should go for a mamogram. I should have told you earler that I had been in a serious vehicle accident and was xrayed all over my body about 13 years ago and only about 11 years ago I decided enough radiation and stopped having mamograms done, I went to doctor annually and he did a manual check but I declined the mamogram. Now I still have some discharge from the inverted nipple and went to doctor for some other skin outbreak on my face, and thought it might be the same cause as my earlier breast swelliing, he thinks I might have contracted Streptacocus A and he gave me 2 rounds of antibiotics and then I had ear infection and onther round of antibiotics and all this I believe has impeded my immune system so I am still concerned after all this about the leaky breast. So I have recently learned from TV about IBC and went to my regular gp who said he has never seen a case and doubted very much I have it but he was openminded enough to ask me to forward to him the tv reporter for his info. When I did this, he called me to say he appreciated the info and the visual of a case, he again did another manual check on my breasts and advised me that I really should have a mamogram on the new Digital Resonance Equipment at the local hospital. I went to the hospital for this and the technician was verbal about me not having a mamogram for past 11 years and that did I not know that in that time I could have died. I told her I am 66 yrs. of age and to die was not such a tragedy. But since I live in a place where many people come to retire, they have the attitude that I could potentially live for another 20-30 years and that I should indeed be more not less thoughtful for my life and not commit suicide so to speak. So I did have the mamogram, the asked about the bleeding and I had to correct their notes that my breast is not bleeding unless I pick the scaly mucous off the inverted nipple and then it bleeds resulting from the nipple separating from the aveola. Well it has been a week since the test, and usually my doc is very consiciencious if he has some tests done to call me when he gets the results, but so far no call, and I am becoming concerned that maybe I have actually got IBC. Has any one had the redness and swelling disappear leaving a bit of a dimpled appearance, which my doctor says is just fatty tissue though it looks less like the dimpled one in your picture, it does still concern me. Yes now after six months and three doctors, and many infectious concerns I am thinking I would hate to have cancer and not be told. So now I am scared! Help me anyone if you know if the red swollen and orange dimpled skin on an IBC can go away to return another day?
Hi. It has been 10 days since the real possibility of
breast cancer has invaded my thoughts. I had a mammo., then an ultra sound and compression test. My BI-RADS is a #4. My left breast has been constantly warm and feels like when I was full of milk, breastfeeding. I’m trying to stay positive. I refuse to get “down” until my biopsy results. I’m sched. for surgical consultation 11/25/08. I’m glad to have found your site.
I think it is great that Susan could have a blog and share with other woman. I am an eight year survior sister to Susan of IBC.
Thank you and Susan
Donna