Tuesday, July 28, 2009

Stacked Crooked, But Now I'm On My Way

It’s clear now that I made the right decision to go with immediate reconstruction. (BTW, this WHOLE post will be about boobs, so look away if you hate boobs) I can still wear most of my shirts and see some shape and know that others see that too, even if my friends know how I got it. Is that the way it should be? Should we give so much importantce to breast size? Future generations will probably find us quite ridiculous, but our urge to define and judge others is bred deep within and goes far back into our past. It’s a hard habit to break. And I guess I just wasn't ready to be declassified.

Would it have been easier to wrap up the mastectomy and be done with it? Short term, oh yes. Those first few weeks were rough. It felt SO wrong to have a foreign object stuffed under my muscle. And yet the worst pain already seems distant. Yeah, I still have discomfort and things I can't accomplish. Days I push too hard because I forget there’s a healing process still going on in there. But for the most part, this new set-up rocks. These abbreviated breasts feel pretty real. Okay, better than real—firm and without lumps.

Had another follow-up with my plastic surgeon yesterday and asked why my left side was smaller. After blanching a little at the slight to his surgical prowess, he said the mastectomy surgeon took more from the tumor side to be safe. Also, my chest overall has shrunk a bit since surgery because the swelling has reduced. My left side now has this indentation between my sternum and the implant. There’s just no fat there. And because they took so much, it’s different from the right (well, to someone who keeps looking at her chest in the mirror every two seconds). It really shouldn't bother me, because I was lopsided before surgery. Why do I need perfect symmetry?

Anyway, I showed him how I can now move my breasts independently by tensing my pecs like a sailor (all I need is a hula girl tattoo, low cut top, a cup for donations and Carbon has another wage earner). He seemed nonplussed by this skill. Would that exercise help, I asked. Not really, no. Anyway, he did give me some options.

First, more massage. Sigh. Oh, so now I need to massage them up and over and NOT down. Got it. Then he said he could put a larger implant in. Um, NO! Then—THEN—he said he could lipo some fat from OTHER AREAS and lay it in over the indentation. It was all I could do not to hop in his lap right then and there and lay a gentle kiss on his forehead.

I do recognize this entire ordeal has failed to stifle my vanity. But how convenient is it that I have just such a fat donation site located in my upper thighs?

Hmm?

Monday, July 27, 2009

On Hormone Therapy

After chemo, I will need to go on Tamoxifen for five years to shut down the baby maker. However, the drug brings its own set of side effects and risks that aren’t too swell. The most immediate being that Tamoxifen increases uterine lining, making the fibroid I have now grow another head or arms or possibly uterine cancer. So I might be looking at a hysterectomy somewhere after chemo and before Tamoxifen. My mom had one at my age because of a grapefruit-sized fibroid, and I have history on the other side of my family for uterine cancer, so it wouldn’t be a surprise.

I’ve also got those other two ner’ do wells, my ovaries, to consider. I need to see a geneticist to determine if my breast cancer is pals with ovarian cancer and if so I may need to have my ovaries removed. I’m not hot on that, because losing your ovaries can effect your heart. So I'd like to stop short of the full Ladiectomy.

I also asked my Oncologist about clinical trials because there is always some new therapy being tested. But it’s a crapshoot. You get entered into this pool. For example: 33% women get the new therapy, 33% get the traditional, 33% get a placebo. And well, it would suck to get the less effective treatment ’cause it’s your life we’re talking about. But there you go.

Meanwhile, we had a great weekend. Party in Uptown, camping up north. The kids had a blast. We played Ghost in the Graveyard at twilight in a big open field. Running felt great. We were all screaming and laughing in terror. The next day it was naps for the adults and over-tired tears from the kids.

Good times.

Thursday, July 23, 2009

Hurricane Downgraded to Category I

Six months ago, if you had told me I had Stage I breast cancer there would have been a gnashing of teeth, a rending of garments. But today, when my oncologist confirmed my prognosis as a Stage I out of IV (4 means spread to other organs), I was actually pleased.

Together with my oncologist, Cheryl and I visited adjuvantonline.com and entered my information. Tumor size, receptor types, age, health, etc. And it spat out charts showing likelihood of me kicking the bucket. Appears I’m 90% likely to survive the next ten years. 9% for cancer getting me and 1% for me walking into a manhole or something. Sounds pretty good to me. Then we looked at the long-term charts for recurrence if I took no further treatment, chemo alone, hormone therapy alone, chemo plus hormone therapy (my eyes crossed while Cheryl actually absorbed the information). As you might imagine, chemo plus hormone therapy has the most gains. I have a 25% recurrence potential if I do nothing and 8% chance if I do chemo with hormone therapy.

Then my oncologist admitted there is still a slim chance I won't need chemo. The problem is my staging falls in a shaggy gray area. Both tumors were below a key size limit, earning me a stage I, but the larger was moderately aggressive. I may already have been cured with surgery or some gnarly buggers just might have escaped. They would probably be slow growing but if they land in my brain, lungs, bone marrow, liver, etc. then they are incurable and, while treatable nowadays, are considered chronic and life-threatening. Geh.

So I gave the go ahead today for a test called Oncotype DX. They send my tumor(s) off to a lab and test the DNA for two things: the chance of recurrence and whether my cancer will respond to chemo. If I fall in the low recurrence, low response to chemo, I will likely just be facing hormone therapy (which I’ll explain in another post). But I may end up in Oncotype's gray area too and in that case my doctor votes for chemo.

It seems there’s a little misinformation on their part, a little misunderstanding on ours. The breast center said I would be facing chemo a month out of surgery but the cancer center now says two months. And why couldn’t they have sent my tumor off to the lab right after surgery? Why are we looking at a rinky-dink computer screen now, couldn’t they have reviewed all this sooner?

Anyhoo, the good news is I have another reprieve. And, even when that’s over, I might not have to have chemo. But then again, I probably will. Or not.

So, cheers!

(edited because I had all my numbers messed up)

Wednesday, July 22, 2009

On Your Left

Vicodin withdrawal has left me itchy and restless. And actually that’s a good thing. I don’t need near as much sleep and I’m actually getting work done.

I took off on my ’89 chrome Robinson BMX this afternoon and headed down the Greenway trail to see if my pecs could handle it. No problemo! Rode up this beautiful bridge.

I had on an old, baggy T and, boy, was the wind through it sublime. Wept like a little baby, some kinda desperate joy I guess. Have no idea why I think I look dorkier on a 3-wheel recumbent than a bike that was made for a kid. But it sure felt good.

My legs just want to spin. My heart wants to rev. My lungs want to rake in big gulps of air. And my brain? It wants me to sail down hills and struggle up climbs, to balance along the white line that divides the pedestrian path from the bikes. This is how I have healed in the past. Perhaps this is how I’ll survive. I hope biking isn’t taken from me. I’d go nuts.

My friend, Rebecca, sent me an interesting article about Post Traumatic Growth in cancer patients, and how positive thinking/action can affect the outcome, extending life for longer than those who simply give up. I also read a book by a woman who was from the other camp, a sort of anti-pink-ribbon-cancer-is-a-gift mentality.

Guess I’m somewhere in the middle. It’s generally easier to be positive, because my cancer appears controllable. But I’m not kidding myself. There are just some things beyond our grasp and ability. And frankly, this gift is kinda lame, albeit non-refundable. Sometimes I can’t help but get down when I try to lift or reach for something that was so doable before. This leads to the problematic: “Must be positive, growing new cancers with negative thinking—Aughhhhhh!” Which is of course ridiculous.

Tomorrow we’re off to the cancer center to see what’s in my chemo sweepstakes package. Will post as soon as I can.

Monday, July 20, 2009

Blogging for Dollars

Yes, it's true. I have officially allowed ads on my blog. I'm not sure what the ethical ramifications are of exploiting ones breast cancer for profit. Guess we'll have to see what sorts of ads pop up. The proper thing would be to donate all funds to defeating cancer. But first I need to defeat my own and contribute to Carbon manor's coffers.

Please commenters, let me know if the ads become annoying and I will take them down.

Thursday, July 16, 2009

Did I Give Myself Cancer?

(Okay, I did say that I wasn’t going to post anything until next week. But I just drank a lot of coffee. So...)

Just about every patient tortures themselves with the above question. It’s very silly on one level, as the deed (if there was one) is done. And too, because many cancers defy the “why” question. But the diagnosis does shock introspection into you like one of those freaky movie close-ups where the camera pulls in on your stunned face and the background stretches out all wonky. Everyone, at some point in their life, wonders about what will kill them, when and how. And cancer, the ol’ joker, is happy to pop out from behind a tree and say, Hey! Might be me!

So here I am, tramping down the well-worn path of clichés all cancer peeps travel. And currently I’m researching causes as well as prevention. Here are some breast cancer risks; I’ve blundered into most of them:

• Did not bear children or had children later than twenties
• Did not breastfeed
• Took birth control pills (for endometriosis, for those of you confused)
• Ate a lot of beef, pork, cured meats, charbroiled meat
• Smoked and drank alcohol
• Wore tight bras
• Frequent periods
• Family history
• Exposure to pesticides

I still don’t think I would have given birth knowing that I would get cancer if I didn’t. But I probably would have stepped up to the plate if Cheryl could not have had the kids. When it comes to breastfeeding, I have to konk myself on the head for that one. We had twins after all! I could have done lactation, but did not opt to do it cause it kinda wigged me out. Grow. Up. Jeez. My periods are frequent too. Chemo will put an end to that.

Okay, I did smoke off and on in my twenties. But, it was cool, and everyone else was doing it, and—dumb-de-dumb-dumb-dumb. As for alcohol, studies show it is jet fuel for estrogen-based cancers. And I do loves me some cheap chardonnay. Oh, how I will miss my two-buck chuck. I stopped eating truckloads of fatty hoofed creatures a while ago, but apparently (like sun damage), junk you consumed in your youth adds up.

The bra thing is still being argued. 34D isn’t ginormous but it is a hassle when you’re not a big boned gal. I strapped those babies down in a sports bra every chance I got, even to bed, in hopes that it would somehow firm them up. But some doctors say that your boobs need to go all free-range so that your lymph glands can clear, plus the muscles will grow stronger that way. Who knows?

There is a smattering of cancers on both sides of my large extended family, but only a couple breast cancers later in life. Still, it does not mean that I don’t have the breast cancer gene. My mother had children at a young age but I’m still keeping an eye on her!

Pesticides? C’mon, we live in the Midwest! Still, it’s organic products as much as possible from here on out.

Don’t get me wrong. I’m not “blaming the victim” in some depressive state. I’m simply waking up to a few things. Probably what everyone has to do before they move on. Basically, risky behavior can trigger cell changes if your DNA is prone to it. Clearly, mine was. How many stories have we heard of smokestack alchoholics living into their nineties? Conversely, how many times have we seen athletes’ or vegetarians’ lives snuffed out inexplicably. Right now, I’m focused on awareness of what my family is putting in their bodies. This week has been a good week and I will be able to go into chemo in a very healthy state.

And finally, let me clear something up. The 1 in 7 women thing? I recently learned that is over the course of a 90 YEAR LIFESPAN. The younger you are, the less your risk.

• From birth to age 39, your risk is 1 in 229.
• From age 40 to 59, your risk is 1 in 24.
• From age 60 to 79, your risk is 1 in 13.

The 1 in 7 number is used to facilitate mammograms. For good reason. But there are other cancers that arguably need as much if not more attention than breast cancer does.

But that’s a whole nother post.

Defying Gravity (sans broomstick, black dress and green skin)

Item #1: No vicodin today!
Miraculously without a 12-step program. Yet.

Item #2: Entire dentist office now alerted to my boob drama
I am shameless in my quest for attention. Admittedly, I needed that cleaning to have bacteria removed before chemo, but since they were asking …

Item #3: Tri-cycle! Tri-cycle!
Cher chaperoned me on a bike ride today on Rita’s three-wheeler recumbent. Smirks from other riders abounded. Just wait until I’m bald, smirkers, then you’ll see.

Item #4: Bras officially rendered moot
I ran for the first time since surgery today. Had to high tail it across the street from the dentist office, because I had crossed against the light (take that death!), and you know what? My new boobs DID—NOT—MOVE. I cannot express what a strange feeling that was. There must have been a jostle of some sort, because they’re not made of concrete, but I certainly didn’t detect it. Wow. Just wow. The possibilities ARE ENDLESS! Hrmph. So sure, I’ll wear your requisite decorative triangles to the beach, dear oppressive patriarchal society, but they are only there for show, so nananana boo boo.

Friday, July 10, 2009

Blue Skies in the Eye of Hurricane Claudia

Though my mind’s floating on pharmaceuticals and my chest is strung tighter than a Stradivarius, most of me is up and running just fine.

Our homelife seems to have righted itself. Not too many chores piling up or calls from friends left unanswered. Cheryl’s stress is lessening a bit. The dogs scamper and play throughout the house and yard, then come to nest on my lap. Sometimes I sit on the kitchen floor with the kids and make Playdough sculptures or read Spongebob comics. Recovery means I can leisurely enjoy my family with the heightened longview of Jimmy Stewart in It’s A Wonderful Life. If there is a gift in this stupid disease, this is surely the greatest portion.

So enough with the navel-gazing for just now. It’s really not very effective anyway. Got some extra fireworks to light, actual social engagements to make and work projects I need my pre-chemo brain for. Unless something earth-shaking occurs, Ladiectomy is powering down until I meet with the oncologist on the 23rd.

Peace out.

Wednesday, July 8, 2009

Overshare

So I dodged a needle aspiration at yesterday’s plastic surgeon appointment. During the exam, I kept my big trap shut, eyes wandering the room, while the doc assessed the amount of swelling. No sense volunteering, right? Cheryl was in on it too, knowing how freaked I was at getting a needle inserted into an already painful area. Still, I’d prepared for the appointment with a percoset and ativan and was pretty much in love with the world, so it probably wouldn’t have fazed me.

Dr. Deangelis thought it all looked normal. We discussed how I was feeling about my new chest rather than the specifics of pain. Because you can cancel most of the pain with a prescription. He said I need to be able to feel my new breasts, literally embracing them. And I have to admit, I just wanted them numb until they were miraculously healed. Like somehow, one day, I’d just wake up to normality and move on.

No, the doc said, what you really need to do is massage them.

Erm. Wha?

Yeah, apparently I need to get in touch with them. And the “ickiest” areas need to be touched first. No masseuse, or partner, or man-on-the-street can do it for me. He said women recover faster when they accept and embrace this new part of themselves.

Sounded a little hippy-dippy at first. But here I am, padding around the house, cupping these incredibly firm lumps on my chest. I’m already so conspicuous about it that someday you might see me in the mall or on the sidewalk, clasping my chest and mumbling affirmations.

I also asked the doc for a less powerful drug. Something better than OTC but less numbing than percoset. So he sent me home with some vicodin.

And then I got the mail today, opened up the latest New York magazine to this article.



http://nymag.com/news/intelligencer/topic/57770/

Jeez! I need to get this chest-palpation show on the road before I become some drug-addled, liver-shriveled nutter.

Monday, July 6, 2009

“It’s Always Somethin”

Gildna Radner really knew a thing or two, didn’t she?

Just when I thought this new chest was done making trouble I had to go and overexert myself. The nurse who removed my drains said not to go out and ride my bike. Fine, right? She said nothing about a little light yard work, fireworks administration and a trip to Chino Latino.

This morning I had to face the fact that my chest is swollen more than it should be, more painful than OTC meds can touch. The rubberband that is my pectoral muscle is not happy with me. So it’s back to percoset and back to bed. My body will absorb some of the lymph fluid but not enough, so I’m probably looking at another needle tomorrow during my post-op visit with the plastic surgeon.

Brings new meaning to the utterance, “Swell.”

I think someone needs to put a straight jacket on me. It could serve multiple purposes. I just want to get out in the wonderful weather and be a part of life before they hit me with the A-bomb. This must be the part where they said cancer would be life-changing. My entire summer is being rewritten. Hell, a lot of summers are getting re-written because of me.

We watched Into The Wild last night. It’s the story a young man, estranged from his family, who runs off to Alaska to live a life away from the hypocrisy that we all know is too rampant in our modern society. He does fall in love with nature but eventually finds that nothing can be fully enjoyed alone.

I certainly did not need this movie to remind me of the naiveté of my twenties or that I should never go walking into the woods unequipped. But it did remind me that holding onto hurt, holding onto resentment is a cancer that can kill you slow like starvation. That letting go isn’t a one time thing. Letting go has to happen every day, like letting your clothes slip from your body, taking a shower or brushing your teeth before bed. And like so many other things I’m experiencing right now, even letting go requires assistance.

Inhale. Relax. Exhale.

Thursday, July 2, 2009

Marionette

One of the annoying aspects of a mastectomy are the drains. And long after you’re up and about and pretending to be fine, they simply hang around waiting to be emptied. A mixture of blood and serum must exit the surgery site, otherwise it would be catastrophic.

My first encounter with the drain was in the hospital, still high on anesthesia so much that the atmosphere was green and spotted. I stood all wobbly, greasy-haired, staring into the mirror, daring myself to look at the area above my bandages. At first, I thought the silicon implant was out of place or defective. A raised six-inch bump ran across my chest, just two inches below my clavicle. Cheryl had seen it too but neither of us mentioned it, not wanting to scare the other. Eventually the plastic surgeon told us that was a section of tubing for the drain.

It’s no fun to empty these things. And I applaud the women who’ve done it alone. I opted for my trusty assistant naturally. Twice a day, I lay prostrate while Cheryl held the tube and ran her pinched fingertips down along the line to remove any clots. The suction created a dull ache inside my chest and made me feel like aliens were coming to life. Then she emptied the clear bladders into measuring canisters and wrote down the progress.

We did have some luck in all this—because I’m relatively thin (and had lost 9 lbs since diagnosis)—I wasn’t draining the amount of fluids a larger woman would. Instead of the regular two weeks of drains, I had next to no output at the end of week one.

So today, after one endless week of pain and mind-numbing drugs and digestive agony (the likes of which I’ve never felt before and hope not to experience on chemo), a nurse quickly and decisively slipped the drains from my chest. I took a deep breath and on exhale she pulled one tube out. Then the next. It was temporarily painful but an immediate release.

For the first time, I faced my new chest in the mirror. I won’t lie to you. It made me sad for what my body has so far endured, but hopeful for a new way. As I sit here typing, I am free of tubes and straps and gauze and tape with a tight ache that cautions patience.

It is taking time to process all that we’ve been through this past week. But I think I’m back now and ready to write. And ready to catch up on what’s going on out there in the real world with my friends and family.

No strings attached.

Wednesday, July 1, 2009

Better Days

Michele had another rough night but she is feeling better this afternoon. Thanks for all of your kind words and laughs. We told the painter/mace story to her parents today. Michele laughed so hard that it hurt. Thanks a lot Todd!

She still doesn't feel up to blogging so I thought I would fill in a few details. Michele had a couple of drains attached after the surgery. She will provide more detail when she posts but they are very uncomfortable and at times painful. I have to clear the tubes and then empty them twice a day. I have been tempted to record the sound she makes during this process. It is really heart breaking. She sounds like an injured animal. She has an appointment with the surgeon tomorrow and we are hoping they will remove them. I'm imagining the process to remove them will not be pleasant (there appears to be more than a foot of tubing inside her on each side) but having them out will be a relief.

We still have a few weeks before we meet with the oncologist . They want her to heal before talking about what comes next. The waiting is a little difficult. I know I'd like to know what to expect and when to expect it. When they said the cancer was not in her lymph nodes I was hoping that she may not require chemo but Judy (her case manager/nurse) said with two different types of invasive cancer we shouldn't get our hopes up.

Michele will be back to blogging soon. Thanks for all of your thoughts and support!