Monday, August 6, 2007

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.

5 comments:

canape said...

Thank you for sharing your story. It is really amazing.

I didn't know a lot of those chemo side effects. You are truly one heroically strong woman!

Sending you virtual wine and chocolate :)

Imstell said...

Aww... thanks, canape. I hope you don't mind if I save it for tonight. ;-)

Whymommy said...

Sending you chocolate and wine too ... as much as you can handle! And then maybe a little bit more. :-)

Thanks for sharing your story.

I'm thrilled that you had a great time camping this weekend!

San said...

Just found your site thru Whymommy. You can now say you have 1 more reader. Sending you wine and chocolate also. I mean, you can never have too much, right?

psquared said...

Oh Honey...I'm so worn out reading the story.

But strangely enough, as much as it pains me to my core to think back to the past 2+ years of your life and face my own fears and demons regarding your cancer...somehow reading your story and reliving it has also built me right back up and put a smile on my face.

You know...you have a knack for that. You truly are my bff, my meant-to-be soul friend whom I'm so very lucky to have. Keep on writing. Because while I may not always mention it, I do love to read all about you!