My story

I always wanted to be a scientist.  From the time I was very young, I loved learning how things work together.  I loved the garden, the sky, and the sea.  When I was 2 and saw my first (non-palm) tree, my first response was to run up and hug it.  At 3, my parents took me to Johnson Space Center and I was fascinated with the spacesuits and the wall of astronauts, studying the faces of these lucky people who could go to space (and asking why there were no women astronauts).  At 7, I learned the constellations with my father….

Oh, wait.  This isn’t the essay about how I became a scientist.  This is the one about how I found out that I had cancer.  You’ll have to pardon my mistake.  For my first 34 years, I loved studying nature, math, and science, learning everything I could to fulfill my toddler dream of working for NASA.  For the last year, I’ve been fighting cancer.  It wasn’t really what I had planned.  In fact, a year ago, cancer was the last thing on my mind.

Then my mother-in-law called and said that she had a lump in her breast.  A week later, our little family traveled out to be with her while she had her biopsy.  Two weeks after that, while she was having her lumpectomy, removing the cancerous lump, I was sitting in another oncologist’s office, shivering in the paper gown, listening to the physican’s associate say, “it could be cancer.”  How did this happen?  We’ll never know how I got the cancer (and it’s not productive to think of it), but the way that I found out was through a combination of coincidence and dumb luck.  Oh, and research.  See, when we found out that my mother-in-law’s lump was termed “invasive ductal carcinoma,” my husband and I had no idea what that really meant.  So we went online (now called “asking Dr. Google”) and read the description of the different kinds of breast cancer at the American Cancer Society’s website.  Now, who even knew there were different kinds of breast cancer?  I sure didn’t, so I read on, fascinated, past the most common types: in situ ductal carcinoma, invasive ductal carcinoma, in situ lobular carcinoma, invasive lobular carcioma, and then there was one more: inflammatory breast cancer.  Curious, I scanned the symptoms.  The description sure didn’t sound like any breast cancer I’d ever heard about before: swelling, redness, thickness of the skin, itching, bruising, and an orange peel texture to the skin.  Huh, I thought to myself.  That doesn’t sound so bad.  Heck, I have that.  And then I realized what that might mean. 

For the past 5 months, I’d had trouble nursing my baby boy.  A hearty kid, he had some difficulty breastfeeding; he just never seemed to latch on well on one side.  Finally, he had good success with the left breast, but never the right.  We were in the lactation consultant’s office often, and the pediatrician’s, trying to find out what was wrong that he wouldn’t nurse when lying or held on that side.  After that day on the internet, though, I began to wonder if perhaps something instead was wrong with me.

My OB/GYN had never seen IBC, but he had never seen the orange peel texture to a breast like mine either.  In his words, and the words of several other physicians I’d see over the course of the next two weeks, “I don’t know what it is, but I don’t like the looks of it.”  Within 2 weeks, I was in that oncologist’s office, shivering, and waiting for the nurse to schedule all my tests.  The next week, I had a mammogram (negative), ultrasound (negative), breast MRI (positive), bone scan (negative), CT (I don’t even remember the results), a skin biopsy, a punch biopsy, and seven core biopsies.  The results were supposed to take a week while they waited for the culture to grow to show any cancer removed with the biopsy.  Instead, the office called me the next morning and said, “Can you come in at 11?”

It was cancer, all right, and a most particularly nasty version at that.  I would have to go into chemotherapy immediately, 16 doses over the next 6 months, follow up with a modified radical mastectomy (breast and lymph nodes), 7 weeks of daily radiation, and even then there was no guarantee of a cure.  Far from it, actually.  For this cancer was particularly deadly.  Only 40% of patients with IBC are alive 5 years later.  90% suffer a recurrence.  The odds weren’t good.

But this story isn’t a sad one, despite the last gloomy paragraph.  Instead, it’s a story of hope.  For thanks to a terrible coincidence, we caught my cancer early enough that the chemo worked.  The surgery was a success.  The radiation is preventing the cancer’s return, for now at least.  My boys (Widget, age 3, Little Bear, age 1, and of course their Daddy) are happy and healthy and mostly unscathed by the Year that Mommy Spent in Bed.  They are sweet and sensitive little boys, who are sure to ask “this arm hurts?” before they jump all over me and smother me with kisses. They are my loves and my delight, and I treasure each day with them.

This is what I want to remember: to love fully and completely, to appreciate friendship and to tell my friends how much they mean to me, and to always take advantage of each day, for the next one may be not nearly so nice.


9 Responses to My story

  1. Kacy says:

    Your story really touched my heart. You are so strong and just having the love of those around you (little bear) will help you be even stronger.

  2. Beth_C says:

    Beautiful post as usual!

    And thanks for the reminder to take advantage of each day…so hard to remember when little ones are whining. climbing all over me, asking for bottoms to wiped, asking for lunch…you know the drill. I need to read this post every day…particularly around 5:30 when the whining reaches it’s peak!

  3. bcjenster says:

    I’m so glad you caught it when you did. I hate you had to have cancer, but the way you’ve educated so many people – medical professionals included – about IBC is amazing!

  4. Geoff says:

    You have an amazing site, with powerful stories that you tell… I would like to feature you on the Welsphere site — please email me! Geoff
    Geoffrey W. Rutledge MD, PhD
    Wellsphere, Inc

  5. sprucehillfarm says:

    I always love you posts. It is incredible how everything lined up at the same time and you found it early! A blessing.

  6. Dear Susan, a wonderful post indeed. You have managed to handle your horrid diagnosis with grace and strength and I am so inspired by you. Lately as you know, I have been struggling with depression. I have been fighting this cancer head on now for almost 5 years. I am exhausted. My doctors all say I should not still be here, I should have died almost 18 months ago! I am certainly not giving in but am very tired at the moment. I have my next chemo and avastin session next Tuesday, I am a week late due to a very nasty infection and some ridiculously strong antibiotics. They are helping but I hate to put of my chemo, I have had to put it off twice before already and I’m not even half way through.

    Anyway I am delighted to be asked to join this wonderful site, to give support and also gain support. To share our trials and joys, our weaknesses and our strengths. There are still many, many moments of happiness and love but the other side of the coin is fear, depression and a heavy heart at times, I think it would be wonderful if we could all share the load and be there for each other. Thank you for starting such a wonderful and inspirational site, I am proud to be a part of it and look forward to sharing my story in more detail with anyone who would care to hear it. Take care to all, love and healing wishes. Jen B.

  7. linseykrolik says:

    Your message is completely true – the most important job we have is to treasure each moment with those we love. Thanks for sharing your story with so many, for opening yourself up, for brining about change and for starting something else that is great. I look forward to reading more and being a part of this group.

  8. sarah says:

    Susan, I have read some of your blog and I adore your sense of humor. I see that you are from the DC area and was wondering if you could email me. I am south of DC and am having an awful time with dr.’s and getting diagnosis of what I am pretty certain is IBC. A breast surgeon even told me, “IBC doesn’t show up as a rash, go see a dermatologist” (If a breast surgeon doesn’t even know…. yikes) The dermatologist said, “Sometimes you change as you get older and there can be discoloration because of the heat in that area….” Your story about having difficulty nursing the baby hits home with me. I’ve been on antibiotics, fungal creams, corticosteroids, etc. etc. My email address is Thanks so much.

  9. JessicaAPISS says:

    Thank you for this post, this site and for bringing these inspiring mothers together.

%d bloggers like this: