Retail therapy

The addition of a third antibiotic is taking its toll. I feel icky, really icky. Just 3 more days of Cubicin via IV, and I am seriously counting the days. Swallowing my old friends bactrim & minocycline twice a day every day for the foreseeable future is easy compared to the Cubicin. It’s not as bad as the Biaxin was; holy Toledo that stuff was wicked bad. Not only did my tummy suffer its wrath, it messed with my mind, too, and I’m halfway submerged in the crazy pond as it is.  Pretty sad when I rank antibiotics the way most people rank the Sweet 16 teams. Wonder what an abx bracket would look like. I don’t even want to know.

I’m finding solace in things like homemade chicken & dumplings, sans chicken (thank you, Staci!) and a gigantic foil pan of homemade macaroni & cheese (thank you, Leanne!). Between the abdominal swelling from the Big Dig and the constant influx of simple carbs, I don’t have a thing to wear. But given the choice between barfing and shopping, I went shopping.

Urban dictionary defines “retail therapy” as the act of shopping as an outlet (pun intended?) for frustration and a reliever of stress. It’s also crucial when you have nothing that fits, despite your own mistaken impression that the ridiculously complicated surgery would actually improve your shape. Retail therapy is scientifically proven to cure what ails you. Imelda Marcos said it best: “Win or lose, we go shopping after the election.” Marcos’s kryptonite was new shoes. It’s estimated that she left behind 2,700 pairs of shoes when she fled Malacanang Palace in the mid-80s and felt the combined judgement of the world coming down on her. That’s a lotta shoes.

Well, I like shoes too, and while I certainly don’t have 2,700 pairs, I did need one more pair of cute but comfy shoes for strolling the wineries in Napa this weekend. Enter TOMS Shoes, and their awesome “One for One” campaign. You’ve heard about it: for every pair of TOMS shoes sold, TOMS donates a pair of shoes to a needy child. It all started 5 years ago when a big-hearted and entrepreneurial guy named Blake Mycoskie noticed that kids in Argentina didn’t have shoes. Blake started the TOMS company, and quickly returned to Argentina with 10,000 pairs of shoes. As of last September, the company has donated more than 1 million pairs to kids all over the world. As you can see from the pics on TOMS website, there are now lots of happy kids looking quite stylish in their TOMS shoes. A million pairs of shoes. That makes Mrs. Marcos look like a bit of an amateur.

My question, of course, was why did a guy named Blake name his company TOMS? Who is Tom?

Here’s your trivia lesson for the day: there is no Tom. Blake is Tom. But not in an alias way; TOMS stands for the Shoes for Tomorrow Project. No, it’s not an acronym, that would be the STP, which I think is a motor oil. And sounds way too close to STD. Not a good marketing idea.

So Blake came up with the Shoes for Tomorrow Project, but discovered that the name was too long to fit on the label and the shoeboxes. He shortened it to Shoes for Tomorrow, but still had too many letters, so he went with the derivative TOMS. The end.

Disclaimer: this is not a paid endorsement for TOMS. I wish. But then that would negate the feel-good effect of getting a pair of shoes I love while also helping out a child who has no shoes. I bought my TOMS fair & square, and while I have no intention of turning this blog into the Home Shopping Network, it’s nice to have something to talk about besides cancer for a change.  

30-day shred

There are lots of subjects packaged under the guise of “change your life in 30 days.” Think about it: you can train your dog in 30 days, tighten your tush in 30 days, reclaim your financial well-being in 30 days, clean up your unhealthy diet in 30 days. You can even lay off drinking alcohol for 30 days, although I don’t recommend it. Some days, that’s all I have to look forward to (the drinking, not the laying off of it).

It’s been 30 days since my reconstruction surgery, aka the Big Dig. I’ve had some inquiries regarding my health, happiness, and healing at this stage, and here’s the deal: I’m certainly a lot better than I was at say, 2 weeks post-op, but sadly, am not completely healed yet.

I know, I know, what kind of eejit would expect to be healed from such a major excavation after a mere 30 days? Uh, that would be me.

To me, the impatient patient, 30 days is a long time. I really thought that at this point, I’d be back to normal and if not scaling the heights I am used to, getting close. Instead, I’m still creeping along, more clunker than speed racer. 

Can you tell I have yet to master the art of enjoying the journey and not the destination? I’m working on it.

After a month of convalescing, I can stand up straight most of the time, instead of walking hunched over. The incision on my belly is still pretty tight, which is normal since the Drs S gutted me.

The skin glue used to close the incisions is mostly off the belly but still stubbornly hanging on the newly formed breasts. That glue really works. I give it a 10 out of 10 for stickiness. I’m at the stage now where I can start gently removing it with baby oil but have to resist the urge to peel it off like a bad sunburn; don’t want to peel off the healthy skin cells in the process, as tempting as it may be.

The beauty of the skin glue, in addition to holding everything together and helping negate the need for external stitches, is that while it’s on, it’s thick and crusted with blood.

snowowl.etsy.com

How is this a positive thing, you may ask? Because at first glance, it looks awful and gives the impression that the scars will be thick as railroad tracks, raised and purple. But once it sloughs off, the scar underneath is actually thin and pink, with the potential for fading away into near non-existence at some distant date, instead of looking like Frankenstein’s forehead for all eternity. There’s hope after all.

I’m still pretty sore, especially around my sternum. If I didn’t know better, I’d think Dr S stood on my sternum to get the best angle for reconstructing. I still get insanely tired from minimal effort. About 3:00 every afternoon, I’m ready for a little rest, much like an overstimulated toddler. But instead of having played in the sandbox and thrown Goldfish crackers on the floor all day, I’ve been concentrating on healing.

My tummy is still quite swollen, and it’s numb, too, but not the good kind of numb as in can’t feel anything unpleasant (hello, novocaine!) but more the strangely unpleasant phantom numbness, in which I can feel stuff but it doesn’t feel normal. I imagine it’s similar to the feeling after having had a c-section. Since my babies came out the other way (or, I “barfed them out,” according to Macy), I don’t know but am guessing. It distresses me to no end to know that this won’t go away for months. Here I am, finally ready to reclaim my body, yet my clothes still don’t fit because I’m swollen and puffy. Not complaining, just sayin’.

Bathing is still a bit of a hassle since my port-a-cath is accessed. That means the needle stays in, through my skin and into the port, so I can administer the IV antibiotics for a few more days (4 more days, but who’s counting?).  The needle needs to exist in a sterile field, and getting it wet is a no-no. The needle is covered with a dressing that is not watertight. I’ve gotten pretty good at the spit bath, and can see a day in the near future in which getting in the shower means just that: getting in, without worrying about anything other than getting clean. It’s the little things, people.

I don’t have full range of motion back, so reaching for a coffee mug on the 2nd shelf or a shirt from the top rod in the closet still smarts a little. Getting better all the time, but respecting the need to not push it. I have no trouble moving my glass from table to mouth, though, so I’m good. I plan to be moving my glass like that a lot next week in Napa. A lot.

"Lots of Wine Bottles" by Leslie Saeta

Finally, some good news

THE DRAINS ARE GONE!!!

Whew.

I can’t even begin to express how happy I am about that. I didn’t have to beg or plead, which is even sweeter. Being drain-free for the first time in 4 weeks is so fantastic that I barely noticed how “slooshy” the right one felt coming out. I was forewarned: Dr Spiegel told me that it was in deep, and when she snipped the stitches away and pulled to free it from the depths of my belly, I felt it slurping around like a sea monster quite a distance from its entry point.

No matter, it’s out now, and that was exactly what I had hoped for. Isn’t it nice when things work out that way? Amy had prepped me before we went into the exam room, telling me in her infinite wisdom not to expect to get them removed, so that if it happens it’s a bonus, but if it doesn’t I’m prepared. As usual, she was right.

No more drains is definitely cause for celebration!

Cheers!

Nothing like a glass of cava in the middle of the day. Except maybe a gigantic celebration, which is what we were having. No more drains makes me a very happy girl. To quote Adam Levine, one of my all-time favorite musicians.”If I never see your face again, I won’t mind.” My sentiments exactly.

For all my foodie friends, here’s something almost as delish as the glass of cava: 

Houston’s house-made smoked salmon with toast points and herbed mayo. Only the restaurant isn’t called Houston’s anymore, it’s Hilltop of Hillmont or Hill-something, but the food is still out-of-this world, and I liked the glass the cava came in so much that I had to have it. It has 3 little bees on it, and I like them. In many cultures, bees are symbolic of hope, tireless pursuit, and the sweetness in life.  My new glass and its 3 little bees stand for all of those things, and which certainly have been plentiful this last month. Gonna go fill it up right now with some Piper.

Salud!

Drains, drains go away

My formerly favorite PA Jenn did not remove my last 2 drains today.

😦

I didn’t expect her to, because they’re still pumping out enough fluid to warrant a longer stay. But I still wanted her to. I kinda wish she’d have said, yeah the volume is high but let me wave my magic wand and fix that.

No wand today.

She also said I need one more week of taking it easy, of trying not to lift my arms, and I’m still banned from chores. While most people would love a doctor’s note to get out of doing chores, that’s not how I roll.

So I’m still grounded, and drain #3 and #6 remain, attached at the hip (literally), keeping me tethered and wardrobe-challenged, but free of complications like seromas. Guess I can’t complain too much.

Jenn did remove the stitches from my belly button, which is a relief. Not because they hurt, but they were long enough to poke through my shirt, which was kind of creepy. Everything else appears to be healing nicely, so the drains will keep draining, and I’ll keep exercising my patience. Like Dory from Finding Nemo says, Just keep swimming, just keep swimming.

On the way out

I passed by two middle aged women outside the surgical ICU holding each other and softly sobbing. Though we certainly would hold our own in a “who’s had a crappy year?” contest we are also well on our way to a new normal that won’t be that different from our old normal which was pretty good.

I can’t get them out of my mind. I’m torn between sympathy for some heart-wrenching loss and gratitude that it isn’t us.

Update 2

I just heard from the nurse and the surgery is going fine. Not much else to report, the coffee machine in the waiting area is pretty cool – some Flavia thing with a dozen choices. I’m getting no cell reception if you are trying to call or text forget it.

Check this out…

I’m honored to be featured as a guest blogger on a fantastic blog called Journeying Beyond Breast Cancer, put together by a survivor-turned advocate named Marie who amazes me with the depth and breadth of her breast cancer and wellness education.

The post Marie so kindly featured of mine is one I wrote a while back, when one of my closest friends was also diagnosed with breast cancer. If you’ve already read it, move on. If not, have at it.

And check out some of the other info on Marie’s blog as well.

Click here to head straight to the blog.

Power of the people (and by “people” I mean “women”)

Another new study about women undergoing care for their breasts shows we’re still not quite getting it right. A New York Times article by Denise Grady published 2/18/11 is so well-written I would love to just reprint it here and be done for the day. But then I wouldn’t be able to pick and choose the parts of the study, and the article, that interest me the most and blab about them here, and it is all about me, right? Or should be. But it’s not. It’s about the 1.6 women who undergo a breast biopsy every year in this country.

Let’s back up a minute. That’s 1.6 million mothers, wives, sisters, aunts, grandmas, cousins, friends, and neighbors. That’s probably someone you know and love. Or at least see at the grocery store or at a family reunion.

Of the 1.6 million women undergoing biopsies, 261,000 will receive the earth-shattering, life-altering news that they have breast cancer. Of those 261,000 cancers, 207,000 will be the invasive kind and another 54,000 have DCIS (ductal carcinoma in situ), which means the cancer is contained and has not traveled to other tissue. One thing the article didn’t tell me is how many of the 261,000 women have both invasive and DCIS, like me? Overachiever that I am, I had both kinds. I always did like two different flavors of ice cream on my cone as a kid, but really this is taking the “variety is the spice of life” idea too far.

What’s important about the new study, by Dr Stephen R Grobmeyer, director of the breast cancer program at the University of Florida? That far too many women are  undergoing surgical biopsies instead of needle biopsies (and yes, that is a gigantic needle Dr Grobmeyer is holding in the picture at left). He and his colleagues studied 172,342 breast biopsies and found that 30 percent of these biopsies are surgical when they should be needle. The going rate should be 10 percent surgical, according to the established medical guidelines.

While the 172,342 biopsies studied all took place in Florida, the expectation is that the rest of the country is similarly over-performing the surgical biopsies, which translates to unnecessary pain & suffering (and potential complications) for the women, as well as major expense. And we all know what a mess that creates.

Why are so many docs performing the more extensive, more expensive, more invasive procedure? We don’t know. The study doesn’t know. The docs who studied this issue have a theory, but they don’t like to talk about it.

Money.

They don’t want to rat out their fellow surgeons, but there is a suspicion (and also a possibility) that some docs perform surgical biopsies, even when a needle biopsy would do, because they make more money. I’m not trying to write an expose here; it’s a fact. The surgeons have a choice: refer their patient to a radiologist or do a surgical biopsy. If they choose the former, they lose the biopsy fee. Here are the numbers: hospitals charge $5-6K for a needle biopsy, but double that for a surgical biopsy. Doctors’ fees follow similar lines: $750-1,500 for a needle biopsy, and $1,500-2,500 for a surgical biopsy.

Dr Melvin Silverstein is a breast cancer surgeon in North Beach, CA, who spoke out in the Times article about the money. He said some of the surgical biopsies were performed by surgeons who didn’t want to lose the biopsy fees by referring their patients to a radiologist. “I hate to even say that, but I don’t know how else to explain these numbers,” says Dr Silverstein.

Dr Elisa Port of Mount Sinai Medical Center in Manhattan says “I see it all the time. People are causing harm and should be held accountable.” By “harm” I assume she means surgical vs needle and by “people” I assume she means surgeons. Dr Susan Boolbol published a 2009 study on this issue as well. As for the idea that money is behind the procedures, she says “A huge part of me doesn’t want to believe it’s true.” But what about the other part?

If it’s not money motivating them, what about ego? I’ve dealt with a couple of surgeons myself. Not from North Beach or Mount Sinai, but I think it’s safe to assume that most surgeons, regardless of who they are or where they live, have a healthy ego. You can’t do what they do without feeling mighty confident about your ability and your judgement. Think about it: when you have a condition that requires surgery, the person performing that surgery not only attempts to fix the problem, but also holds your life in their hands. Literally. Once they cut you open and handle the contents under your skin, they are holding your life. Knowing that you can do that, and then executing that successfully, feeds the ego.

So isn’t it possible that the surgeons who are performing surgical biopsies when needle biopsies would do aren’t money-grubbing, but egotistical? Is it possible that they truly believe they can tackle that problem, and do it better than anyone else? That certainly is the attitude I want my surgeons to have. I want them to believe so fervently that they’d come to blows in the OR over who is most qualified to perform my surgery. How’s that for an image? A gaggle of scrubbed-up, gowned & masked surgeons going at it over who gets to slice & dice. Times like this make me wish I could draw cartoons. That would be a good one.

Seems there is more than money involved in the biopsy issue. Whether surgeons order a surgical or a needle biopsy also depends on the type of surgeon, and I’m not talking orthopedic vs plastic. Among breast surgeons at Beth Israel in Manhattan, those employed by the hospital and involved in teaching fell under the 10 percent guideline. Those in private practice had a 35 percent rate of surgical biopsy. And the rate of surgical biopsies was even higher for general surgeons, not breast surgeons (37 percent). Because all the docs earn a biopsy fee, they all are chasing the same carrot.

A side note here is required, to address the patient’s role in all of this. I don’t want to dog the patient, because I am one, but I also would wonder about any woman who agrees to have a general surgeon do a breast biopsy. If a mammogram comes back funny and the OB-GYN recommends a biopsy, I sure hope the OB-GYN would refer to or the patient would demand a breast surgeon. And I also would hope that the OB-GYN and the breast surgeon would discuss the pros & cons of different biopsy types before rushing a woman into the OR. At the risk of sounding like Forest Gump’s friend Bubba discussing types of shrimp, there are several choices among needle biopsies: fine-needle aspiration, core-needle aspiration, stereotactic, and vacuum-assisted core needle. More than you wanted to know? Perhaps, but a useful point in the patient’s role.

I’d like to think that education is another reason for the high rate of surgical biopsies. And I mean by the patient and the doctor.

A surgical biopsy requires at least a 1-inch incision, then stitches of course to close that incision. The incision and stitches lead to a scar, not to mention pain and downtime, and introduce the possibility of infection. Yes, it always comes back to the infection with me. It would for you, too, if you’d ever gotten within spitting distance of a mycobacterium. Blech. Plus, if that surgical biopsy comes back with malignant results, we’re now talking about two surgeries instead of one.

So we’ve got money, ego, and education as reasons this is happening. Regardless of reason, what is the answer? Dr Silverstein has an idea. He says one way to stop excessive surgical biopsies is to ban them. Unless they are truly necessary and a needle can’t do the job, make them against the rules. And his hospital has done just that. “We made a rule,” he said. “If it can be done with a needle, it has to be. We embarrass you if you do an open (surgical) biospy. We bring you before a tumor board to explain.”

Ooooh. I’d love to be a fly on the wall. Seeing a bunch of surgeons embarrassing each other? And there’s not a reality show for that?

Dr Silverstein went on to say that when he lectures other docs and asks for a show of hands as to how many audience members perform surgical biopsies, no one raises his/her hand. “Nobody will admit it,” he says. Personally, I imagine him smirking a bit when he said that. That’s why he takes his message to the streets, to educate the docs and in turn hopefully educate the patients. He’s discovered that it’s more effective to go straight to the patients, though. He and his colleagues say that any woman who’s told she needs a surgical biopsy should question the doc and consider getting a second opinion.

Dr Silverstein believes in the power of the people. In this case, the power of the women. I like that. A lot. He says, “Who just overthrew Mubarak? The people. This is exactly the same thing.”

A wild goose chase

Disclaimer: I’m not dogging Walgreens. I love Walgreens. I spend a lot of time there. I’m just reporting the facts.

My doc called me in a prescription of Tamiflu, and my Walgreens was all out of it. So the pharmacist, who I happen to know quite well by now, called a little before noon to tell me he was transferring it to the Walgreens at Highway 6 & Williams Trace, a few miles away, and that it would be ready in a couple of hours.

Meanwhile, I was dying a slow, painful, cough-ridden death, so I decided to take matters into my own hands. I dragged my sorry carcass to the garage, got in the car, and drove to my Walgreens, to get the prescription and take it to the other Walgreens myself. I couldn’t wait another couple of hours. Remember me, the impatient patient?

It took an enormous amount of effort to accomplish this, and I shudder to think at how frightful I looked. I did change out of my jammies, but hadn’t brushed my hair in two days. Couldn’t care less. Just wanted to get the drugs into my ailing system as fast as humanly possible.

My buddy the pharmacist says, Oh I must have just missed you. I left a message on your answering machine at home to tell you we transferred the Tamiflu to the Walgreens at Lexington and 1092, not Williams Trace.

Good thing I didn’t head straight to Williams Trace.

He advised me to go straight to the Lexington store and look as pitiful as I did in his store. He thinks he’s pretty funny.

So I dragged myself back into the car, drove to the other store, and hauled my sorry self to the pharmacy counter, holding my breath in hopes that they did indeed have my drugs and that they were ready.

Have them, yes. Ready, no. That’s ok, because it gave me time to do a little Valentine’s Day shopping. By the time I stocked up on candy for my Valentines and Propel for myself, my drugs were ready, and I kid you not, I ripped into them right there at the counter (after I paid) and sucked the first dose down then and there. Kinda reminded me of when I dry-swallowed a Xanax at the Taylor Swift concert a few weeks after I had my mastectomy. True story.

Desperate times, and all.

I came home and crashed out for nap #3 (all in the same day, egads), and am only now starting to feel marginally better. I still have a fever, and the nagging cough is still nagging me. The body aches are better but the headache is still plaguing me, no doubt a result of the nagging cough.

Tomorrow will be better.

Repeat 1,000 times.