One more thing to worry us

Posted: January 28, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , | 2 Comments

Because breast cancer survivors don’t have enough to worry about, now there’s this: the FDA reported that women with breast implants have a small but slightly increased risk of developing anaplastic large cell lymphoma (ALCL), a rare disease typically affecting 3 out of 100 million women.

While ALCL is rare, it seems that women with implants may have a “very small but increased risk of developing the disease in the scar capsule adjacent to the implant.” ALCL is a cancer involving cells of the immune system, which scars the fool out of me.  Scarier still is that this immune system cancer can appear anywhere in the body. ALCL is not breast cancer, but it can show up there, or anywhere else. Thankfully it is very rare: 1 in 500,000 women a year in the United States, and it’s even more rare to develop ALCL in the breast (3 in 100 million). Whew!

And while all women with implants could be at risk, whether their implants are for reconstruction or recreation, for the purpose of this post, I’m going to focus on breast cancer survivors who have implants.

WTH???

Really?? After surviving breast cancer, enduring reconstruction and getting on with life, we also have to worry about this? You’d like to think (at least I would) that as a cancer survivor, you’ve suffered enough (I know I have). But apparently there’s no end to the the amount of suffering spewed by the dreaded cancer.

I’m so sick of cancer.

One of my bookclub buddies, herself an 11-year breast cancer survivor, just had to make a quick run to Alabama to visit her “surrogate mom” at the lake who appears to be losing her cancer battle.

My beloved aunt is recovering from surgery last week to remove part of a stage IV glioblastoma. I don’t even need to tell y’all how bad a stage IV glio is. Get well soon, Thea Sophia.

I saw a story on the Today Show about a 3-year-old girl who had a mastectomy (yes, you read that right, she was t-h-r-e-e years old) for a rare but early-striking form of breast cancer.

My tennis teammate and dear friend who endured diagnosis and a double mastectomy and has completed 5 of her 6 chemo treatments is battling hard, and she is an admirable warrior. This stupid disease has changed her body and robbed her of tennis for all these months. It’s forced her to live way outside of her comfort zone and to learn lessons she’d rather remain ignorant of, all the while still driving carpool, making dinner, overseeing homework, and keeping the household running. The battle has taken a lot out of her, but she still has a lot of fight left in her. And she looks amazingly beautiful in her sassy headscarf. Chemo may have taken her hair and has tried to commandeer her brain, but it can’t take away her smile and her fortitude.

I miss my mom every single day, and every single day I curse the wretched disease that took her life, too young and too soon. I could write all day and all night and not run out of things I miss about her. Stupid cancer.

Then there’s my own cancer battle.

I’m not a candidate for implants myself, since the post-mastectomy infection that snaked through my chest wall took its pound of flesh from the right side. I thought I was getting the short end of the stick by having to endure a much more complicated surgery and recovery than that required for implants. Perhaps I was wrong. Although who knows what the FDA will find as risky for breast cancer survivors who opt for different reconstruction methods. We can’t win for trying.

The good news is that I do indeed have a surgery date (gulp). My impatience, which I blogged about on Monday, paid off, so all those naysayers out there who were going to tell me that good things come to those who wait can shut it. Thank you.

Sonia, Dr Spiegel’s nurse, called me Tuesday morning to tell me that Dr Spiegel and Dr S had a meeting of the minds and found a date that works for both of them. Gulp.

It’s March 2nd.

Texas Independence Day. My cousin Ross’s birthday (hey, cuz). Also celebrating birthdays on that day: Dr Seuss, Sam Houston, and Reggie Bush. Oh, and my new boobs.

Introducing the New Dr S

Posted: January 20, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , | 8 Comments

There’s a new Dr S in my life. I’m happy to introduce Dr Aldona Spiegel. 

She’s purty.

And smart.

She’s younger than me and has 3 kids, ages 6, 2 and an infant. She’s tall, slender and blonde. And she’s a renowned surgeon. If I didn’t like her so much, I might hate her a little.

But she’s gonna build my new boobs, so I love her.

We had a fantastic consultation today. Every aspect of her office, from the atmosphere to the staff, is first-rate. Beautiful waiting area, pleasant receptionist, warm & friendly nurses, a big Mac (computer, not burger) in the exam rooms, a fantastic physician’s assistant, a comprehensive bound photo book of before & after pictures of her patients, and of course the lovely doctor herself.

According to her website, “Her goal is to provide not only the most advanced breast restoration procedures, but also a caring and supportive environment—allowing each woman to complete a successful rehabilitation from her breast cancer battle.”

I like that. I’m especially intrigued by the idea of rehab from my battle. Sounds good.

How about this: “Dr. Spiegel is committed to providing superior, patient-focused care and preparing the next generation of surgeons to meet the highest standards of excellence. This vision combines a dedication to advanced research, exceptional education, and the development of new, less invasive treatments and procedures.”

Great!

She trained in general surgery at Johns Hopkins Hospital and did her fellowship in reconstructive microsurgery and specialization in plastic surgery at Baylor College of Medicine where she was served as Assistant Professor of Plastic Surgery. Dr. Spiegel has trained with leading reconstructive surgeons around the world, developing and improving upon techniques to help minimize the aftereffects of breast cancer on a woman’s body.

This just keeps getting better and better!

Here’s where we get into the medical mumbo-jumbo: “Dr. Spiegel’s clinical expertise is in advanced breast reconstruction techniques and microsurgery, particularly in the area of surgical reconstruction with reinnervated autologous muscle-preserving perforator flaps, including the DIEP Flap, SIEA Flap, SGAP Flap, TUG Flap, and the TAP flap. Dr. Spiegel also specializes in Lymphedema Procedures, advanced Implant and Latissmus reconstruction, and has pioneered Sensory Innervation procedures which have the ability to reestablish sensation to the breast resulting in the most complete form of breast restoration. In addition, she is interested in all aspects of aesthetic surgery and is committed to women’s health issues in plastic surgery.”

Sweet. She is the total package.

The only complaint I have is with the panties. 

They were made of paper. And small. Really small. I spent a few seconds staring at them before thinking, one size does not fit all.

Egads. Cue the humiliation. Again.

Luckily, I’ve been humiliated in a doctor’s office before, so I’m ready for it and ok with it. I slipped on my pretty blue paper panties and the matching blue paper gown and prepared to meet my new savior, Dr Spiegel. I’m so glad I’m past caring about meeting a beautiful and successful doctor while wearing the most unflattering paper garments ever.

She answered all my questions, most importantly the one about weight gain. I’m good, I’m fat enough and don’t need to gain any more.

Whew, that’s a relief. I was getting pretty tired of drinking beer & eating chips. Now that I’ve bulked up, I am free to return to my normal, healthy eating. She said she would prefer to have a bit more building material, but she can work with what I’ve got, so I don’t have to worry about applying for a new zip code for all the junk in my trunk.

Now that’s a relief.

She’s planning my reconstruction, and it’s going to be pretty great. I’m actually starting to envision an end to this long, bumpy road. As much as I detest the idea of another hospital stay and recovery, I’m looking forward to closing the book on this chapter of my life. It’s such a cliche, but it’s true. Reconstruction is a big, scary step. I totally understand why some women never do it. And if not for the infection and the mess it left behind, I wouldn’t be in any hurry to do it myself.

But the infection did leave a nasty mess, and it continues to wreak havoc, and the best way to end that madness is to excise the tissue (again), and replace it with new tissue and a new blood supply.

It means a long surgery, a night in the ICU, and several additional nights in a regular room. Ugh, yuck, and ick. But, it will all be worth it when it’s done and I can say I’m truly on the other side of this wretched business.

Stay tuned.

A weighty issue

Posted: January 9, 2011 | Author: | Filed under: breast cancer, food | Tags: , , , , , , , , , , , , , , | 10 Comments

I received a serious assignment from my doc. Now don’t laugh when I tell you this, because it’s not funny, and don’t say “lucky you” because I’m not so lucky. It’s serious.

He wants me to gain weight. A lot of it. So he can build my new boobs. 

We’ve had this conversation a couple of times and I’ve stuck my fingers in my ears and said “la la la, I can’t hear you” because I didn’t want to do this. I’ve spent most of my life beyond the age of about 15 trying not to gain weight. When you’re five-foot-nothing, there aren’t a lot of places to hide the extra pounds, and I personally don’t like the way my body feels with a lot of extra weight on my frame. I’ve never been a skinny chick and don’t aspire to be, but don’t want to be mistaken for a contestant on The Biggest Loser, either.

I worked hard to prep my body before and after my mastectomy, to gain as much muscle strength and cardio conditioning while fueling myself with a good diet. I also played as much tennis as humanly possible in the weeks leading up to surgery. It all paid off, too, with a shorter surgery, no need for Alloderm (cadaver tissue used to connect and close mastectomied chests), and a pretty easy recovery. Because I was in good shape, I was up and out of the hospital bed the day after surgery, trolling the halls. When I got home, I had a decent amount of independence because I didn’t need much physical assistance. That was, and is, important to me. So the idea of turning into a big blobby girl, even temporarily, scares me.

The first few times Dr S brought it up, he warned me that I didn’t have enough belly fat to build the new girls. At that point, reconstruction seemed so far away that I didn’t pay much attention. But the last 2 times I’ve seen him, he’s been more stern about it. I hate it when he gets stern with me.

When I saw him a couple of weeks before Christmas, I told him I’d been drinking a few beers for the first time in 15 years, and I wasn’t playing much tennis because of a recurring foot injury. That was about as much as I was willing to commit to his “living large” plan. I did the usual indulging over the holidays, but I also went to the gym.

So when I saw him the other day, instead of shrinking from his “examine the fat” game as I have in the past, I told him I’d been working on a big project — a BIG project — and showed him my newly rounded belly. I was sitting on the exam table so my belly even hung over a little bit. I thought it was quite impressive, as it’s the biggest it’s ever been without a fetus inside of it.

He was not impressed. Not even a little bit.

He told me to pull my jeans down a little and gave me the pinch test, then had me bend over to see how far it hangs. So much fun. I live for that game.

Then he made a very stern face and said it’s not enough. It’s still not enough. It’s enough for one side, but not both. And maybe not even enough for one. Since I have impossibly high standards and insist on a matched set, that’s a problem.

Dr Sternface says I’m not really even a candidate for the DIEP flap procedure, but since I have no other options, we have to try and make it work. I was thinking about this later and wondered, if I’m not a candidate but don’t have any other choices (i.e., tissue expanders to implants), what’s a girl to do?

Eat, girl, eat. And then eat some more. Then have a beer. Followed by a milkshake.

People make fun of me for being a healthy eater. I genuinely like oatmeal with blueberries. I love salad. Not being a carnivore eliminates a lot of the unhealthier options for me, and I like it that way. I’m not super picky but I don’t like drive-through food in general, and I don’t get the “all you can eat” places at all. I’m not a big junk-food junkie, and usually whatever I cook is way better than that stuff anyway. Not being conceited, just stating a fact.

I’m not doing a very good job with my assignment. Yesterday I had half a bagel with a piece of melted provolone and a handful of blueberries. It felt pretty indulgent to me. Lunch was two pieces of leftover pizza, with an orange. Cheese & crackers for a snack before we played tennis, then dinner after with the tennis gang at a BBQ place. I had pinto beans with pickles, coleslaw, green beans, some mac & cheese and a few fries. Oh, and a roll. Wish I’d thought to put butter on it. Melanie told me that I wasn’t going to get the job done eating all those vegetables and suggested I get a milkshake. Every day.

Today we played 3 sets of tennis and I was hungry. We splurged on brunch at the club, which for me meant mixed fruit, cheese & crackers, salad with lots of blue cheese dressing, and some tuna. Mimosas, of course. Then some pasta with artichoke hearts, mushrooms & sundried tomatoes. Then a few bites of seafood ettouffee. And a sliver of key lime pie and a chocolate-dipped strawberry.

I feel kinda sick.

My doc keeps saying he just hates the idea of me going through this giant surgery and hard recovery and not being satisfied with the results. I keep telling him that any change over the status quo will be an improvement, and I’m ok being average. At least in this one category. He doesn’t seem to believe me, even though we’ve had the same conversation repeatedly.

He wants me to go see the other surgeon who will help him with my case. I’ll have to see what she thinks about the bulk-up plan. Meanwhile, I need to think of a new t-shirt slogan. Something like the “baby” with an arrow pointing at the pregnant belly t-shirt, only a different kind of “under construction.” Any ideas?

Homework

Posted: January 7, 2011 | Author: | Filed under: breast cancer, drugs, infection | Tags: , , , , , , , , , , , , , , , , , , , , | 5 Comments

I’ve been reading up on and researching reconstruction. Oh, to return to the days in which the only context I had for reconstruction involved the South rising again.

Alas, that’s not to be, and the horse is out of the barn, the worms are out of the can, and we can’t unring that bell. So now reconstruction means something entirely different.

It was supposed to be a pretty simple affair: tissue expanders put in at the time of my mastectomy, which would be filled with saline slowly and gradually, over a period of a few months, to allow my skin to stretch and accommodate a set of perky but modest implants (male readers, go ahead and groan at the mention of modest implants.) Why does one need her skin stretched for implants, when millions of women get the orbs jammed into their chests in a single step? Because those millions of women haven’t had their flesh scooped out down to the ribs. (Hope you weren’t planning on eating BBQ anytime soon.)

Back to the implants: my simple affair turned in an epic fail when the right tissue expander exercised some really bad judgement in allowing a mycobacterium to share its space. Ah yes, the infection. That dadgum bug turned my world upside down, and fast-tracked me from post-surgery superstar to sick, sick, sick. My recovery was going so well. I was convinced I’d be back on the tennis court in a month. Sigh.

Moving along to option B: the TRAM flap. It’s a big surgery (8-12 hours average) with a week’s stay in the hospital and 3-to-6-month recovery. Youch. I didn’t really get how they accomplish this surgical feat, so in the course of my research I watched a youtube video of an actual TRAM flap procedure. “Ewww, gross” doesn’t even begin to cover it.

In laymen’s terms, the surgeon cuts a football-shaped piece from your tummy, with the incision going from hip to hip. He or she (for this purpose, we’ll say “he” since Dr S will be the surgeon, but y’all know I’m all about equal opportunity so I must digress) then cuts the rectus abdominal muscle, in its entirety or partially, and  uses that muscle as the blood supply (e.g., blood vessels and small arteries) in the newly created breasts. Then he tunnels his way from the tummy incision up to the breast area, shoving tummy fat upward to create the new breasts.

After recovering from the grossed-outed-ness of watching this, I marveled at the ingenuity of the technique. Pretty cool stuff. But I admit it unnerved me for a few days. You may recall from previous posts way back when this all started that I HATE hospitals. I detest the smell, the noise, the lack of privacy, the parade of people in & out of the room, the clanking of carts up & down the hall, the cafeteria-style food, the machines beeping, the cords snaking everywhere, and the omnipresence of needles and IVs. I do like the morphine, though.

In addition to my extreme and unconditional hatred of all things hospital, I now fear them greatly and mightily because of the infection. I’m really, really scared. Like “want yo mama scared.” The risk of infection in any surgical procedure is estimated to be 3 percent. That’s pretty low, right? When you think about all the different surgeries done in all the different hospitals in all the different cities every day, that’s pretty low. But leave it to me to be the one person who gets it. Sheesh.

And leave it to me to get a rare infection that is not only hard to classify but hard to kill. Hence the never-ending 12-hour cycle of oral antibiotics. A quick back-of-the-envelope calculation tells me I’ve been taking those two oral abx for about 140 days. And there’s no end in sight.

So you can see why I’m not exactly rushing back into the OR for my reconstruction.

However, the compelling reason to get in there and get ‘er done is the complications still arising from said infection. Dr Grimes, my infectious disease doc, thinks that undergoing the surgery sooner rather than later will help clear up some of those complications by way of cleaning out the unhealthy tissue and replacing it with fresh new tissue with a brand-new blood supply. Sort of like replacing your old, threadbare socks with a nice new pair.

That’s why I was doing my homework and scaring myself half to death, so that I can go into my appointment with Dr S armed with knowledge and ready to proceed. I took a lot of notes and tried to keep up with all the different kinds of flap procedures: pediculed vs non-pediculed vs perforated, etc. Then there are variations on the procedure called DIEP and SIEA flaps (Deep Inferior Epigastic Perforator and Superficial Inferior Epigastic Artery, respectively). Prior to my research, I had no idea what TRAM stood for but speculated, based on my limited knowledge, that it was “That’s Rough on your Abs, Ma’am.” Turns out it’s actually Transverse Rectus Abdominis Myocutaneius. Good to know.

I didn’t pay much attention to the DIEP and SIEA flaps, because the TRAM flap was the only procedure Dr S had ever mentioned. I assumed that’s what I’d be getting. We all know what happens when you assume…

Dr Dempsey pointed out, however, that the DIEP flap is the one for me because it spares the ab muscle, something I will want and need as I go forward in my long, active, tennis-filled life. The DIEP flap is a more complicated surgery (12-15 hours), though, and there’s not nearly as much info available on it as there is on the TRAM flap.

Here’s why: the DIEP involves a lot of microsurgery. Instead of transferring the ab muscle and its blood vessels to the breast area, Dr S will make that big incision on my tummy, but leave the muscle there, removing the blood vessels and arteries entirely and reconnecting them in the new breasts. Apparently he will have to cut a piece of a rib, too, to make this all come together. I choose to skip over that part and not even think about it. Yikes.

The DIEP is considered the gold standard of flaps. And the reason there’s not as much info available is that it is a more technically complicated surgery, and not many surgeons do it. But if you’ve read any of my posts about Dr S, you know that he is the gold standard of surgeons, so I’m in good hands.

Stay tuned.

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