• The boys and I

  • A Little ‘Bout Me

    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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Once upon a time

It seems that Inflammatory Breast Cancer is getting a lot of play these days, what with WhyMommy’s campaign over at Toddler Planet and all. I really wish I had been introduced to the whole blogging world before I was diagnosed for many reasons. First, it would have given me lots of reading material during those l-o-n-g days otherwise spent in front of the tv. Also, because it would have been, oh, so theraputic to write about the whole process. And also, mostly, because I wouldn’t have felt so alone. And since I have a whole slew of people, well, three – three people who swing by here every now and again to looky-loo at the IBC survivor freak show I thought I might tell my story. So here goes…

Once upon a time, in a sewerless small town on the left hand side of America there lived a mother, a father, and a son. Mommy and Daddy-O had been living happily with thier son B for 3 years but wanted another baby with whom to share their life. But sadly, it seemed babies were not as easy to come by as all that. Just when all the family was giving up hope the happy news of a new baby was discovered! Mommy and Daddy-O and B were thrilled!

D was born a bit on the early side as Mommy said he would be. Mommy is very smart about these things so people should learn to listen to her. Because he was still so young, only 35 weeks, but still pretty big, 7 lbs 3 oz, he had to stay in the NICU for a few weeks and learn to eat. It was a very frustrating time for B – being a big brother but not having a little brother to show off around and all that fun stuff he’d been looking forward to for so long. That part kind of sucked.

Then things got better. D got to come home when he was 3 weeks old. At his six week appointment Mommy asked the doctor when he would start focusing. She was told alot of stuff about adjusted age and such which all meant, “not yet”. Then things got worse. Four days after D’s six week appointment his right eye clouded over.

Fast-forward through an emergency trip to Children’s Hospital Los Angeles, several references to “masses” and “blastomas”, an eye ultrasound and an Exam Under Anesthesia (EUA) and we find Daddy-O dazedly listening to Dr. Tawansy tell him how D’s retina’s are detatched and are causing some sort of very bad glaucoma-like pressure build-up in his eyes so he had to remove his lenses… The rest is a blur and a distant murmur as Mommy wanders the room looking at cross-section eye diagrams through unquenchable tears wondering how D will ever appreciate the brightly colored dancing bears on his bedroom walls when he’ll never, ever see.

Slowly over the next several months the little family adjusted to it’s newest member. As with everything else, B, Daddy-O and Mommy were up for the challenge and opportunity D’s blindness provided. Mommy and Daddy-O were awed that God had placed so much faith in them and felt honor-bound to not let Him down.

In September of 2005, when D was 5 months old, Mommy went back to work. Also, around this time she began limiting D’s play time with his booby friends. This upset D so much that he decided he hated one of his booby friends. In fact, he hated Right Booby so much that he refused outright to associate with her at all. He would scream and arch his little back if Right Booby so much as pointed her little nipple in his general direction. Mommy chalked this up to a Blind-Boy Downfall, that is, positional aversion, which can be very common and unexplainable in vision impaired children. Also, Right Booby was feeling very sad, and lonely and engorged about now.

Soon September became October and D and the Booby girls quit playing together entirely. But poor Right Booby was never quite right again after her rejection. She always felt engorged and bloaty and generally cranky for the effort. Slowly it seemed that the little soft spot for D inside Right Booby just hardened up into a rock. It was a rock the size of Mommy’s fist. This kind of tripped Mommy out. Mommy started asking her other Mommy friends about it and many of them assured her that they too had felt rocks in their girls on one side or the other after weaning… but they had gone away after a few weeks. So, not being in any pain at all, Mommy decided to wait a few weeks.

Enter the Holidays: Thanksgiving with all it’s office closures and vacations. Also enter Mommy’s first cycle since having a baby. In all the frosty coldness of late fall the only thing growing is the rock in Right Booby. Mommy decides to see her doctor. After much debate with the nurse about how she was NOT comfortable waiting until December 23rd to be seen she was worked in the next week – December 12th, 2005. Soon there was a mamogram on the 14th (showing nothing followed by an ultrasound which showed nothing), a surgical consultation with a fine needle biopsy (VERY mean procedure) which was inconclusive, followed by a core needle biopsy (not too bad at all), followed by an unbearable 24 hour wait for results. On December 22, 2005, she was diagnosed with stage IIIb Inflamatory Breast Cancer. Her tumor was 9+ cm.

Whew! I’m pooped just writing about the journey to diagnosis. I guess the thing I want people to take away from this part of my story is this… I never had a lump. I had a thickness that solidified. Even though it’s IBC, my breast was never red and I never had any skin changes until the very, very last. And, folks, my tumor was HUGE!

I’ll finish the story tomorrow.


5 Responses

  1. […] symptoms.  I was.  In fact, Danny’s refusal to nurse on my right side was the very first sign that something was wrong with my breast.  Of course, I assumed his blindness was giving him positional aversion.  I wish […]

  2. I do not know whether it’s just me or if perhaps everybody else experiencing issues with your site. It appears like some of the written text within your posts are running off the screen. Can somebody else please provide feedback and let me know if this is happening to them as well? This may be a problem with my web browser because I’ve had this happen previously.


  3. Greetings! I know this is kinda off topic but I was wondering if
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    I’m using the same blog platform as yours and I’m having problems finding one?
    Thanks a lot!

  4. Hi just came upon your blog via Yahoo after I typed in,
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  5. This is a great blog, thank you for sharing.

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