I hope she doesn't mind if I brag a bit

My sister, Susie, just ran a marathon today. She ran the Marine Corps Marathon in Washington DC. It is a 26.2 mile run (that's 26-point-2....don't forget the point-2, Susie says).

She ran it in 5 hours, 47 minutes, and 18 seconds. I am so impressed! I can't even run for 5 minutes without getting a stitch in my side. I've just never been a runner....a walker, yes, but not a runner.

Susie has been training for the race for awhile now, and I was afraid we had spoiled it for her back in September. She came to visit just before my surgery, and on the flight home (she lives in Boston) she caught something and suffered through a sinus infection for weeks. It set her back in her training a bit, but obviously she recovered because she finished the race and did so well!

I am proud of my little sister, and really pleased that when she was given a free phone call at the end of the race, she chose to call ME! Well OK, she really wanted to talk to the kids, plus our parents and brother were already there, cheering her on so there wasn't anyone else to call but me. But still, I got to hear her voice!

She sounded great, not even winded. She said her quads hurt and she was a little chilly, but fine. I told her to find Mom and Dad, because they had a snack for her. We sent her some GORP from the Girl Scouts, a favorite.

26.2 miles. What an accomplishment! It was a personal goal Susie set for herself and she worked hard to make it happen. I am in awe. Makes me want to take a nice long walk, to get some exercise too. And maybe I'll start training for next year's Race for the Cure. I plan to walk it next year, not work the water station. Maybe I can get some tips from Susie, and work on my running. I wouldn't be able to keep up with her, of course, but it would be a personal goal worth setting.

Congratulations to Susie, my awesome runner of a sister!

I swear I felt them bounce!

I really felt it, I swear! Last Wednesday, I was walking across the parking lot at the elementary school, on my way to read to Leah's kindergarten class for Read-Aloud Week. The sun was shining, and there was a slight breeze, which was so welcome as it's been unusually hot and I've been sweating in tank tops with long-sleeve zip-up sweatshirts.

So I'm walking across the parking lot, or more like bounding (I've been told I walk like a guy), and I had the strangest feeling: my boobs were bouncing with each step I took! Whoa! It was pretty cool! Not to mention pretty funny, since there's really nothing to bounce with.

They weren't that big before my surgery, though they did have some bounce. But when I was pregnant or nursing (which was pretty much-nonstop from 1998 to 2006) they were spectacular, and they'd just about give me a black eye when I ran.

So it was a pretty neat feeling, a little blast from the past.

I've heard that you can experience phantom pains after mastectomy, but I don't recall anything about a phantom bounce. Or phantom letdown, either. (My apologies if this is too much information) Letdown is that feeling in your boobs when you're nursing, just before the milk is released. I've had that feeling post-mastectomy too.

All these phantom pains are actually quite cool, not upsetting in the least. Maybe it's God's way of easing me into my new breastless life, I don't know? Maybe He's treated me to some nostalgic sensations, so I don't miss the boobs. (And at the risk of seeming like the lady doth protest too much, I really don't miss them.)

But the goosebumps? Those are the pits! Ick! When I get cold, and I actually do get chilly easily, I get goosebumps. Now, that hurts. But I'll weather the goosebumps, no problem. And I'll enjoy my phantoms while they last.

Sleepy but otherwise fine

I have been so sleepy these days. I don't understand why (I really don't). I'm more than 3 weeks past surgery, and while both the bilateral mastectomy and the oopharectomy may be considered major surgeries, they didn't knock me off my feet for very long. In fact, the nurses had me up and walking almost as soon as I woke up from the anesthesia. (Well, maybe they made me wait an hour or two. Once I could prove to them that I could walk to the bathroom and wheel my IV drip machine along without tripping over it, they pretty much let me get up as I needed.)

But I digress. I was talking about being sleepy. I felt pretty energetic for a while. I surprised my neighbors when I showed up at the busstop one afternoon, not long after I came home from the hospital. I even went to my jazz class that week (but didn't dance, don't worry. I waited until the next week. Don't tell my surgeon.)

About 10 days ago, the sudden drowsiness began. With no warning at all that it was coming, my eyelids would feel heavy and I'd be out. I could fall asleep in a chair, doing a crossword puzzle, just like my dad. Kind of like that 1st-trimester drowsiness. (No, I'm not! Are you crazy? With 4 kids and no ovaries? Impossible!)

And can you believe, my children think nothing of Mommy's sleepiness anymore! Yesterday I dozed off on the sofa, and little Frances just curled up on me and rested too. Sometimes she even takes a blanket and tucks me in!

I had read that Femara can make you drowsy, but this fatigue started before I took my first Femara.

My husband thinks that maybe it's all catching up with me. Maybe I'm too active, I don't know. I did drag my dad all over Lowe's last Friday, looking for the perfect rhododendren. We left with a carful of them. And perhaps I shouldn't have driven Leah to her t-ball game before I was ready to drive. I mean, I could drive....I would never put my child in danger....I just couldn't close the trunk (which I realized after I opened it) or shut the (non-automatic) door to the minivan. Not enough reach or strength. That was exhausting, not to mention embarrassing, tracking down someone to help me with my own vehicle.

Maybe I'm tired because I couldn't sleep on my back (I'm a tummy sleeper), and had way too many 3- or 4-hour nights before I finally found a comfortable position on my side (last week, yay!)

Since I wasn't sleeping anyway, I would get up and putter around. I'd unload the dishwasher so I could stretch my arms a bit. I reached up for lots of things, any excuse to stretch. I was so afraid if I didn't start using my arms right away, my shoulders would freeze.

So I guess I've done this to myself. I've made my own bed, so to speak. I can get through the fatigue, and my afternoon cup of tea is a great pick-me-up. So far, it's not disabling. And the bright side: if I do need to take a nap, at least now I can sleep comfortably on my side! Be grateful for the little things, right?

Me? A courageous blogger?

I am so excited, I could split my stitches! (I promise, I won’t.) My new blog friend, Jen from Jenster’s Musings, has nominated me for the “Courageous Blogger Award”.
Here it is:


Jen received it from another blogger, and she decided to pass it on to me, and to our blog friends Sherry from ABreast In the World, and Jill from Reconstruct This.

In case you can’t tell from their blog names, these women are breast cancer survivors like me. Jen, too. Somehow, we all found each other’s blogs and quickly discovered that we have had some similar experiences with our breast cancers. Some of us have had mastectomies, some reconstruction, some oopharectomies. Most important….and this is what drew me to their sites….we all share the same “I can do this” attitude that helped us get through treatment and recovery.

I am so pleased that my new friend thinks I am a courageous blogger! Jen is a very courageous person herself. You should visit her site to read her story. I’ve added links to my favorite breast cancer sites in the sidebar of my blog. Jen’s is there, plus Sherry’s and Jill’s. There is also Princess Hedgie’s blog, and a blog by a survivor named Jayne (who seems to be my cancer twin, at least from what I’ve read that she’s been through)!

These blogs are all great reads. These women are wonderful writers, very knowledgeable about the cancer world, and the best "bloggy friends" a breast cancer survivor could wish for!

Could I be any more special?

I forgot to mention in my last post, I may be even more special than I thought.

On Monday, my oncologist informed me that doctors are now saying that some women with a certain genetic variation (involving CYP2D6....pronounced "sip-two-dee-six"....it has to do with how the body metabolizes) do not receive the full benefits of Tamoxifen. Women with this altered gene may be at higher risk of relapse when they are treated with tamoxifen.

One hint that Tamoxifen is not working is the absence of hot flashes, or not very intense hot flashes. Interesting news, since I'd been on Tamoxifen since April and experienced essentially no side effects. The hot flashes I experienced during chemo were very mild, and after I started taking Tamoxifen they were rare and very very mild. I just figured I was one of the lucky ones who didn't have a bad experience with Tamoxifen.

Since I've had my ovaries removed and am officially post-menopausal, I've experienced some really hot hot flashes. I can see that what I thought were hot flashes before, that was nothing! Perhaps I am one of those special women who don't metabolize Tamoxifen correctly. That would certainly explain the recurrence.

Although this CYP2D6 knowledge has been out there at least since 2005, it is still considered new. Doctors don't routinely test for this before prescribing Tamoxifen. There is a genetic test I can take to see if I do have this altered gene, but it is so new and expensive that my oncologist doubted my insurance would cover it. No matter, I wouldn't waste my money on it. I'm not taking Tamoxifen anymore anyway, and so it would only serve to satisfy my curiosity. Maybe it could rule out the CYP2D6 factor, but then I'd probably obsess over it all and wonder what the real reason is for my recurrence. I don't need more worry! And, I'd still be in the same boat I'm in now, not having much in the way of treatment options except for my new drug.

So I'll focus on the good news about being truly post-menopausal (and no, it's not the hot flashes part, although I am always chilly so it could be nice in the winter): I am now able to take Femara, which is in a higher class of drugs called "aromatase inhibitors", to help prevent recurrence. They don't give you these drugs unless you're through menopause, and they are supposed to be TONS better than Tamoxifen. And after my Tamoxifen experience, hypnotherapy and/or acupuncture would probably yield better results for me than that stupid drug! So I'll be happy with my Femara, and I look forward to a nice warm winter.....

I'm special (so special)

I was never a big fan of Chrissie Hynde, lead singer for The Pretenders, a band popular in "my youth" (late 70s-80s).

But for some reason, her song Brass in Pocket (which I didn't like back then either) has been going through my head....mainly this line: "I'm special (so special), I gotta have some of your attention give it to me"

It invaded my head on Monday, after John and I met with my oncologist. We mostly talked about whether or not there's any chemo that could help me. She told us that I've already been given the biggest guns they had (Adriamycin/Cytoxin and Taxol), that I can't have that stuff again, and that there is no "standard of care" (no standard treatment) for my situation.

So I AM special, you see. I'm an odd case, because I had a recurrence despite receiving the standard treatment for a pre-menopausal woman with estrogen-positive breast cancer (chemo, surgery, radiation, and Tamoxifen, a drug that supposedly prevents recurrence). What chemo didn't get, surgery should have. What surgery may have missed, radiation should have zapped. And if there was any speck of residual cancer left over from all this treatment, Tamoxifen should have kept it from growing.

I am now a very non-standard case. There are no studies with results that will help define my treatment from here on. My surgeon actually presented my case at a conference, the day before my surgery, and consulted other experts in the field about my situation. All agreed that a mastectomy was necessary (even I knew that!), but the oncologists did not know of any chemo that would help me, and the radiation oncologists said additional radiation wouldn't help me either. I am so special that I stumped the experts.

My oncologist mentioned a chemo pill called Zeloda that she has used for patients with metastatic disease (that means the breast cancer has spread elsewhere). I don't have metastatic disease. All the scans they did before surgery showed the cancer has not spread past the left breast. But could I take this new chemo as a preventative? My oncologist doesn't think it's a good idea. It's not the standard of care, she said. She also said, and I'm sure that when I meet with my surgeon on Monday he'll agree, I'm considered cancer-free. The pathology showed very deep margins (at least 2 cm around the cancerous tissue), and the scans showed no spread.

So I'll take my new drug, called Femara, which is tons better than Tamoxifen in preventing recurrence. You can only take it if you're post-menopausal, and since the ovaries are now gone I am eligible for this drug.

Yes, I'm special....SO special that no one knows what to do with me! But to tell you the truth, just this once, I'd really rather be normal!

what about the children? part 2

So, what about the children? Where have they been through all this mess?

Well, they've been at school and preschool and home. They've been taking ballet and piano lessons. They've been practicing with their softball and t-ball teams, and playing softball and t-ball games. They've been riding bikes with their neighborhood friends, doing homework, and helping Daddy and Mommy in the garden. Baby Jesse has been playing and chasing his sisters and running as fast as his little 18-month-old legs will carry him. He is one busy little fella!

It's really been business as usual here. I don't have any cute stories about the kids and how they're coping with this new cancer. When I told them I had to go in for surgery again, so the doctor could scoop out the cancer again, and Leah's biggest worry was that I'd forget my cell phone and she wouldn't be able to reach me. As I posted earlier this week, Emma and I have had some cancer conversations, but for the most part she is unaffected.

I hope the physical changes (and therefore the impact on the children) will go unnoticed by the children. The girls know Mommy had surgery on the left boobie, but they don't know Mommy asked the doctor to take the whole thing plus the other! That's way too much information for them at their age. I've been masking my flatness pretty well by layering with tanktops and zipup sweatjackets. The girls know that Mommy's boobies aren't that big anyway, so they haven't noticed a thing. I probably should be insulted, but in this case I'm relieved!

I don't think I'll need chemo this time, but the girls have been through the whole hair loss thing already and they love Mommy's wigs (Frances still talks about Delores), so we can handle that too. I'll find out for sure about the chemo on Monday, when I meet with my oncologist.

But I'm really truly hoping that this time around, breast cancer doesn't change much for us. I don't want to traumatize the children, and so we try to keep things normal (well, as normal as we ever were, whatever that was). So we'll go to the ball games and the practices and the ballet and piano. And we hope that when people wonder, "what about the children?", they'll see that our kids have learned that life goes on, no matter what.

I feel pretty, oh so pretty....

I am clean! Squeaky clean! Took my first post-surgery shower Wednesday and have showered every day since. What a wonderful feeling!

After my surgery last week, my surgeon told me to keep my stitches and drains dry. "No showers?", I whined. "Nope, just birdbaths," he said.

Birdbaths? While I chuckled at his choice of words, I was very disappointed. If you can't shower, why bother? You don't get clean in a bathtub, you just sit in dirty water. It's fun if you have candlelight and a glass of wine, but I didn't think that would go with my painkillers very well.

So I kind of wallowed in my filth for a few days. I did let the nurse help me wash up before I left the hospital, and I may have wiped down my pits once or twice after that. I don't sweat much these days, even with the hot flashes (I'm officially post-menopausal now, remember....the ovaries are gone) so I wasn't that bad. At least no one said anything.

You can imagine how pleased I was to get the go-ahead on the shower, once I got the drains and sutures out. I've showered every day since, just because I can!

what about the children?

At a church dinner a few weeks ago, one of the members approached me and began consoling me. She was devastated to hear my news of the second cancer, she said, and she was praying for me. Naturally I thanked her and we chatted a little. She asked lots of questions about the cancer and I answered them as best as I could. The only problem? This all happened in front of the children. It was a sit-down dinner and Emma was seated right next to me. I knew she was picking up on the seriousness of the situation.

At 8 years and the oldest of our 4 children, Emma is very observant, very sensitive. Even last year, before we told her about the first breast cancer, she knew something was going on.

Emma overheard the woman's questions, and I know her ears perked up. So when I say that I answered the questions "as best I could" I meant I tried to make the situation sound like a "no biggie"....we'll just go in and scoop out the cancer, and that's the end of it. That's pretty much how we explain it to the kids. (Eventually, I know, we'll have to explain to them why Mommy looks like a walking billboard, since her breasts....even the right one, which had no cancer....are completely gone. But they're not ready for that kind of detail, so "scooping out the cancer" suffices for now!)

Anyway, back at the church dinner, this very sweet woman left me with more kind words, and she choked up as she said, "Oh I just get so upset, thinking about your beautiful children. What will happen to them?"

What will happen to them?????

Please, please, please, if you ever take anything away from my blog, please remember to watch your conversations with your cancer friends! Don't act like they're going to keel over any minute! Don't corner them with their children within earshot! You don't know how much the kids know or don't know.

In our family, we're honest with our children and give them information according to what they can comprehend. For example, when I started chemo last year, rather than freak them out by saying Mommy's hair was going to fall out, we told them that the chemo would make my hair hurt so much that I'd have to cut it short. (It fell out later, but they were so used to my crewcut that it wasn't very shocking or exciting.) Also, we called chemo "strong medicine" and radiation "Suzy Sunshine" and tried to make cancer as fun as it could be by letting them put tattoos on my bald head or use my head for a bongo. We put our best spin on the situation, and they seemed to breeze through the year with no trauma.

Fortunately, Emma didn't hear the woman's "what about the children" comment. Or maybe she did. One Saturday later, as I drove her to her softball game, she said, very matter-of-factly, "Mommy, I don't want to grow up with just a daddy."

So I know she's thinking about this, and she grasps the concept very well.

I assured her that I didn't intend to die from cancer. (In fact, way on down the road when I die of something else like natural causes, a Mack truck encounter, or a vanilla-latte-and-Cinnabon-overdose, I want my obit to state very specifically "Cancer did NOT kill her." And don't get me started on "her battle with cancer", I can't stand that concept!)

But in the car that Saturday morning with my serious-minded first-born girl, I told her that while some people do die from cancer, I did not plan to be one of them. "That is why my doctors want to do surgery for me," I explained, "to get it all out. And maybe I'll do some chemo afterwards if the doctors think that's the best thing for me. I'll do whatever it takes, to make sure I am here for you. I don't want you to grow up with just a daddy either."

That seemed to satisfy her. Emma talked a little about the other options the doctors might consider, like more Suzy Sunshine.

And then the conversation moved on to other things, like Mommy, can I still do cheerleading this year? And when can I get a bra, all my friends wear one (she's been begging since the summer, although if she develops like I did she won't need one until she's about 15!)

So I knew things were good in her 8-year-old world, for a little longer at least. I will do whatever it takes. And I hope she remembers that.