The “C” Word

In October 2011 I reached the 5 year mark.  Cancer-free for five fabulous years!  They certainly weren’t five worry-free years, by a long shot!  Early last year my blood work started showing some changes.  My Alkaline phosphatase levels were fluctuating.  They would go higher than normal, at my next appointment would drop back to nearly normal again, only to raise fairly drastically the next go round.  Very much like a roller coaster – a very not-fun roller coaster where I worried about liver or bone metastasis.  Of course, I got my very permanent, very meaningful 5-year tattoo in October anyway because I’m very, very stubborn like that.

So, this morning I had my 3 month follow-up appointment with my wonderful Oncologist, Dr. Villa.  She’s wonderful!  Incredible!  Awesome!  I fully and completely credit her (and God, of course) with saving my life.  I’ve even forgiven her for scaring the bejeebus out of me when I asked her what my recurrence risk was way back when in May of 2006.  She didn’t even blink an eye when she said, “90%”.  Jeez!  You could sugar coat it a little, Lady! 

Anyway, back to the appointment.  I’ve been very glad to have one coming up since I’d developed some sensitivity in some of my lymph node areas.  I’ve been losing sleep over it.  At least I think that’s what has been disrupting my night-time routine.  Maybe I’ve been worried.  Maybe a little bit.  Maybe.  So, imagine my surprise when she walked in to the exam room and told me that she was going to consider me cured. 

Wha?  Huh?  Did I miss something? 

Yeah, you heard me right!  The other “C” word. 

Cured! 

CURED! 

Cured, as in, gone.  No more cancer.  Not ever. 

OK.  Am I the only one that thinks this might be a bit of calling up the devil?  Scary stuff…

So she explained herself.  First off, my rogue Alk Phos levels have returned to normal.  In fact, my labs are “perfect”.  <Insert pride and preening here>  Then there’s those odds… the 90%…  Turns out most of those turn out to recur in the first 18 months.  Particularly the Triple Negative Inflammatory Breast Cancer patients, like me.  However, turns out that a small percentage of Triple Negatives have cancers that are particularly susceptible to chemo.  Women with this small percentage of Triple Negative cancer who manage to make it to the three, four and five-year marks also tend to never recur.  Never. 

Joyous of all words, that “never”. 

So here I sit with 5 years and 3 months of cancer-freedom under my belt and a new “C” word behind my name. 

Stella, cancer patient.

Stella, cancer survivor.

Stella, cured.

Cross-posted to Mothers With Cancer

Please insert this where appropriate in "Once upon a time…"

As I talked to my mom this morning I realized I left out one of my favorite parts of my cancer story. So I’m inserting it here for your reading enjoyment.

And now, this important public service announcement…

Many of you have allowed yourselves to imagine the hair loss associated with chemo and have jealously realized that it probably also extends to one’s legs and (dare we dream) under arms. Oh, how right you are! It is one of the few perks for the breast cancer patient. Mommy often complained that she couldn’t be lucky enough to get a cancer that made her lose weight. Noooo! She had to get one that made her gain weight. So no longer needing to shave her legs and under arms not only seemed like a boon… it really seemed only fair.

Where your imagination may not have taken you, however, is somewhere in between a breast cancer patients legs and her under arms. Have you guessed yet? Yes. Mommy began losing all her pubic hair too. Daddy-O was not altogether unhappy with this development and Mommy was not altogether happy with the reaction from Daddy-O. She wasn’t sure she like the thought of the father of her children enjoying her looking like a twelve year old. Hmmm. All in all, tho, it was very nice to be so neat and tidy with absolutely no effort on her part.

So Mommy would be going about her busy bald little home life, adjusting to her side effects as best she could. There was intermittent nausea, variations of constipation or diarrhea, rushing to the bathroom then peeing on her pants… Oh, wait. Not everyone does that? Well, Mommy did it constantly. She felt like a little boy learning to pee on the potty for the first time. She’d sit down to go… and the next thing she knew, her waistband was all wet or there was a large waterfall going over the bowl to the floor. She used to joke that she changed clothes and spent more time on her hands and knees cleaning the floors in the bathrooms than she ever had during potty training B.

Finally Mommy realized what the problem was. Apparently a little known fact about nether hair is that it is a great urine-flow director. Without those little curly gals down there to keep things in line Mommy had a stream gone wild! Well, at least once she figured it out she could adjust for damage control. Still, it was a long, damp, laundry-filled three weeks.

You can all stop giggling now. And if you’re experiencing this yourself at least you now know you’re not alone.

And she lived happily ever after

Whew! What a weekend! I am too pooped to pop! Plus I am a bit on the beat up side. Hint: campsite at tip-top of hill + bathroom NOT at tip-top of hill & ridiculously far away + bottle of wine + slippery grass + sandals = two skinned knees, one bruised hip and profuse apologies to the ears of campers between Lobo 11/12 and the bathrooms. Otherwise, a great time was had by all. As soon as I can find the blasted cable to download the pictures from Daddy-O’s camera I will provide a proper post as befitting a 7th birthday party.

So, back to the summer of 2006 and the ever popular medication, Xeloda. Not every cancer patient gets to take additional chemo, ya know. IBC patients are special. IBC is one tough customer so they like to make absolutely certain that nothing can survive in your body. Perhaps not even you.

We need to go back a bit in our story here. Right after Mommy went to meet her BFF, Mama C, in Las Vegas she came home and had Right Booby cut off. That’s right, a modified mastectomy on the right hand side. They removed 12 lymph nodes. After 8 rounds of chemotherapy Mommy’s tumor was still greater than 11 cm and she had several positive lymph nodes, although, remarkably, she cannot remember exactly how many now.

Mommy spent 3 days in the hospital and was glad for that. Can you believe that many hospitals do mastectomies as OUTPATIENT SURGERY??? Even though she was glad to get the bad-news boob gone for good, Mommy still felt a bit less than whole. She just did not feel right being so out of balance, with one tube-socky booby and one man-chest side. Mommy was profoundly sad inside. Daddy-O must have known Mommy would feel like she’d lost a part of her body because he bought her a new toy- a laptop which she loved almost as much even if it didn’t fit into her bra.

Mommy started on Xeloda in June 2006. It is an oral chemotherapy drug. Mommy was relieved not to have to go anywhere or feel like an invalid with needles, etc to get her treatment. She could just pop a pill in the comfort of her own home. Easy, right? Right. Well, Xeloda’s big side effect is neuropathy. For the record: neuropathy bites. It’s all it’s cracked up to be and then some. Just in case you don’t know what it is here’s the Reader’s Digest Condensed Version. It does nerve damage. Semi-permanent nerve damage. Mommy’s has mostly gone away. Nana (Mommy’s Mommy) still has most of hers.

Mommy started getting a tingling line from the top of her head, straight down thru her right eye ending in the hollow of her cheek. The tingly numb line was about 2.5 inches wide. It would come and go for an hour or a so at a time. Her fingers and toes would go numb and she would get clumsy. Daddy-O would tell you that Mommy isn’t exactly the most graceful of women on a good day. On Xeloda Mommy would do things like miss the step while carrying a laundry basket because she couldn’t feel it with her foot. The she would fall and feel very stupid – and sore.

Every day Mommy tried to get up and moving so she wouldn’t become too sedentary. It became harder and harder as the summer progressed, however. Soon she developed hand and foot syndrome. This is when your hands and feet (or in Mommy’s case just her feet) become really red and sore and maybe blister and peel. Every time Mommy got up from her chair she felt as if she was walking barefoot across scorching hot asphalt – just like when she was a little girl. It was excruciating.

At the beginning of July, Mommy began radiation treatment also. This was quite the coop on Mommy’s part because it meant cutting down her treatment time by 6 whole weeks! Mommy has always been a big advocate of multi-tasking. So she went in to see the radiation oncologist and got very fancy black dot tattoos to mark her for the radiation treatments. With IBC there is skin involvement so they purposely bring the radiation all the way out to the skin level in order to kill off any remaining cells that may be hiding there. This means lots of skin burns.

About three weeks into Mommy’s radiation, the little family, minus D, went to Disneyland for B’s 6th birthday. Mommy used a motorized cart to get around and still from the combination of the radiation and Xeloda she didn’t fare too well. When Daddy-O, Mommy and B went back to the room for dinner Mommy noticed a large raw spot under her right arm. When she dabbed at it a bit all the skin just rolled away. She put band aids on and sucked it up for the cause. She had to change her shoes because her sandals had caused blisters between her toes too. By the end of the weekend, Mommy had no skin under her right arm, and the entire ball of both of her feet were blistered all the way across and up between her toes.

Ultimately, Mommy’s radiation had to be postponed for 3 weeks to let her underarm heal. It was a green, nasty, oozy mess. Mommy’s feet were so bad during this time that she could hardly walk. This was the very worst time in Mommy’s treatment. But her hair had already started growing back when she was at Disneyland so she didn’t have to wear hats anymore at least. Well, as long as she didn’t mind people assuming she was a little butch.

Daddy-O and Mommy took a wonderful vacation to Puerto Vallarta with good friends of theirs in October 2006. They had a wonderful time. They slid thru the jungle on zip lines and spent lots of quality time in the lounge chairs. When they got home Mommy did one more week of Xeloda then thru away her prescription bottle for good. She was officially no longer a chemo patient.

At the beginning of November Mommy had her ovaries removed because she (and Nana) was BRCA 2 positive. In January 2007 she had free flap reconstructive surgery with a left modified mastectomy and immediate implant reconstruction (and bonus tummy tuck). She went back to work in March. The first Monday in November Mommy finally gets her nipples back.

Today Mommy is perfectly healthy. She feels great and is full of energy. She works full time and chases both her boys. Her check ups are down to every 3 months. So far her blood work looks great. But Mommy has a 90% recurrence risk. Whatever. Who’s got time to worry about numbers?

That pretty much brings us up to date. I left a bunch out. I forgot a bunch. Mostly that’s from chemo brain. Do your self exams. Be aware of your breasts. Have a mammogram. Insist on swift medical attention. Don’t be put off by doctors who may have never seen IBC. Know your family history but don’t depend on it. Most women diagnosed with breast cancer have no prior family history.

Whew. I don’t know about you guys… but I just relived the hardest couple years of my life. I think I need a nap and perhaps a bunch of chocolate and maybe wine.

Once upon a time continued…

Sorry, Folks. I took yesterday off to work. It’s a little thing I do every now and again to pay the bills. Now, where was I? Oh, yes. I had just been diagnosed with IBC 3 days before Christmas 2005. By this time my right breast was very large (my girls are/were no slouches to begin with), tho not red or discolored in the least. My nipple was beginning to retract a bit, however. At this point I still had not seen an oncologist, only a surgeon. I encourage any woman diagnosed with breast cancer – no matter how small the lump/mass/spot/dot/shadow – to see an oncologist. Even if a surgeon says a lumpectomy will do the trick it never, ever hurts to get a second opinion from an actual doctor who specializes in all that cancer stuff. Anyway… back to our story…

Mommy and Daddy-O decided to keep their new reality to themselves through the holidays. It’s not exactly tidings of comfort and joy, now is it? So no one knew but Mommy’s co-workers (because that’s where she got the call) until after New Year’s Day. On January 3rd, 2006, Mommy officially became a cancer patient – two weeks after diagnosis, 3 months after discovering a hardened area in her breast and 4 months after D rejected Right Booby for the first time. Right Booby was rock hard, half again as big as Left Booby and Mommy’s tumor was over 10 cm in width.

Something you should probably know about Mommy is that she is a “planner”. This is how all the people who love her refer to Mommy’s tendency to obsessively research and map out every minute detail of her life and sometimes those around her. People who don’t love Mommy probably call it something much less flattering. Keeping this in mind, when Mommy started chemo treatments, control was the hardest thing she had to give up. Mommy sometimes wondered if this was maybe why God might have given her that particular trial to overcome.

Mommy’s first chemo treatment was pretty scary for her but she hid it inside because that’s what she does. She buried it in humor and sparkling personality… because that is also what she does. A very sweet nurse tech came to administer Mommy’s IV meds, her name was Fia. This first time Mommy had to have her treatment through her vein and it made her c-o-l-d. She huddled under a blanket and made out thank you cards for Christmas presents. (She had a port-a-cath put in before her next chemo so she never had to use her veins again.) She peed red from the pretty wine-colored cocktail they pushed into her veins. But she felt good and she went home to see what would happen.

The next day Mommy went to work, then went in & had her neulasta shot. Mommy does not like neulasta. Neulasta may keep your white counts up so you don’t get sick… but it is NOT a nice shot. She wants everyone to know that growing bone marrow is painful work. Mommy took one day off work that 1st round of chemo (plus the time for treatments and drs visits) but felt pretty good all in all. The second round went much the same with an extra dose of bone pain compliments of neulasta and two days off post chemo for nausea and pure exhaustion. A note here… By round two Mommy’s hair had begun to come out. At first it wasn’t too bad. It came out if she pulled at it which is suprisingly hard not to do. But by the day after chemo Mommy felt like she was showering with spider webs. Her hair just kept coming out and coming out and coming out. The water didn’t wash the hairs off. It was like the water coming from the showerhead was really hair and the more Mommy rinsed the more hair there was. Mommy cried that day like she had never cried before – except the day she found out D would never see. Mommy realized that losing one’s hair is much easier in theory than it is in reality. So that night, when Daddy-O came home from work, Mommy had him shave her head. Daddy-O was a bit on the freaked out side but Mommy felt liberated and, most importantly, in control again.

The 3rd round of chemo was the turning point for Mommy. As soon as she got her neulasta shot she felt weak and nauseous. She spent 4 days in bed and didn’t go back to work for the next 13 months. There were alot of good days, and some bad. And alot of blessings that can’t even be ennumerated here.

By April 14, 2006 when Mommy finished her 8th round of chemo, her face was bloated up like a puffer fish from the steroids, she was bald and very tan. Did you know that chemo makes you photo sensative? Neither did Mommy. Also, Mommy had hot flashes that could power her whole neighborhood. Chemotherapy also does not like ovaries and kills their cells with wild abandon. Mommy’s bloated round head would burst into bloom with little beads of sweat if she even thought of moving. And poor Daddy-O had to get up in the middle of the night to change sheets that had been night-sweated upon more times than Mommy could count. He was a trooper and only complained a little. At the end of April, Mommy turned 40 and a week later she and Daddy-O went to Las Vegas on a very, very special trip.

Not only was Mommy celebrating her big 4-0 in Vegas… but she was meeting, for the very first time ever, her bff, Mama C. They had a wonderful time and forgot all about the other C in Mommy’s life.

Meanwhile, back in the sewerless small town on the left-hand side of the America, Mommy’s oncologist was planning more treatments for her. When Mommy came home she started taking Xeloda for six months. And also radiation for 6 weeks.

Sorry to stop short. I’m leaving to go camping with the family for B’s 7th birthday weekend. We are taking 5 of his friends to the waterslides and camping. Hurray! More later.

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.