It’s that time of year again

Summer in Texas means a few things: happy kids, hot & humid days, and baseball All Stars.

Texas is a baseball powerhouse in general, and our neck of the woods is no different. We’re right down the highway from Pearland, whose Boys of Summer blazed a trail from Texas to Williamsport, Pennsylvania, last summer to go nearly all the way in the prestigious Little League World Series.

houston.culturemap.com

This truckload of Pearland boys could be from any Little League in Texas; hopefully in a couple of years it will be my kid’s First Colony team. We watched every game last summer, cheering for those boys in blue and hoping they would prevail. We laughed at the way the media zeroed in on the Pearland moms and their blinged-out team shirts. I guess not everyone “does” baseball that way, but around here, it’s de rigueur for baseball moms to have glitzy shirts, often with their kid’s number emblazoned in rhinestones. Writer Ken Hoffman said the Pearland team “tore through Texas tournaments and blew into Williamsport with tape-measure home runs, speeding- ticket-worthy fastballs and bedazzling mothers that the Little League World Series won’t forget.”

chron.com

All Stars is an exciting time. Grueling, too, with practice 7 days a week until the games start. We plan our vacations around the All Stars schedule, and schedule our daily activities around practice. The first tournament begins Tuesday, and I sure hope the Big Red Machine blows through District and Sectionals the way they did last summer, blazing a trail straight for the State Championship in Tyler, TX.

Since I missed pretty much all of it last summer, I didn’t realize that our district, Texas East Little League, “stretches from the Sabine River in the East to I-20 in the North to I-35 on the West to San Antonio and from there to the Gulf of Mexico and back to the Sabine River,” according to the Texas East website. 

We’re that little strip of green in the middle, District 16. Texas is a big state, the second-biggest in the country in both population and area, and baseball is serious business around here. I don’t know how many Little Leagues there are in Texas, but considering that this great state is 773 miles wide and 790 miles long and populated by some 25 million people (thank you, Wikipedia), I’d say there are a bunch.

I’ve written a lot about having missed so many of Payton’s games last summer. Don’t worry, I’m not going to re-hash it today. Suffice to say that if it had just been the bilateral mastectomy in mid-May, I would have been in fine shape for the All Star summer schedule. But no, the post-mastectomy infection had to surface, and the resulting hospital stays and surgeries meant there would be no trip to Tyler for me. From the moment that infection reared its ugly head, my life became one complication after another, and I began to live the famous Winston Churchill quote of “If you’re going through hell, keep going.” Just do it without being able to watch your kid play the best baseball of his life. From mastectomy to infection, to nearly 30 days in the hospital, to multiple tissue excisions, to saying good-bye to the tissue expanders, to a shaky recovery involving all manner of antibiotics and home health, to slowly very slowly getting a semblance of a normal life back to finally getting around to reconstruction, to the long recovery process after The Big Dig. Quite a circuitous route I took, with very little baseball.

So this summer, I’m going to soak it all up. Every scorching minute of it. Since Texas is in a major, seemingly unending drought, we probably won’t have to worry about getting rained out, like we did a few times last summer. I’ll be in my blinged-out shirt, cheering hard for the boys in red, and reflecting back on how much I missed last summer at the ballpark.


Homework

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.


In the trenches, together

You’d think that having a friend going through the worst thing you’ve ever faced would be a comfort. And it is, kind of. It’s also really hard and really sucky, because as great as it is to know that she truly gets what I’m feeling, it means that she’s probably feeling it too, because she’s in the trenches herself.

Does that even make sense?

It does to me, but if you’re having trouble following along, bear with me. My friend in the trenches is staring this vicious beast in the eye, going toe-to-toe with the roughest part of the “cancer journey.” (I really hate how that phrase conjures up a nature walk or space travel or anything other than what it is, which is hell. For lack of a better phrase, I’ll continue to use “cancer journey,” but I insist on taking away some of its power by using quotation marks.)

She and I had a great day together yesterday. I took her to her appointment with Dr S., which is always fun for me because I’m not the one sitting on his exam table. She was getting her tissue expanders filled, and I’m going to risk embarrassing her a little here by saying that girl is starting to become stacked (yes, I’m envious, but so so so happy for her at the same time). I also had gotten my tissue expanders filled a few times this past summer, before the *&$% hit the fan and “mycobacterium” became part of my lexicon, so I knew what to expect from the procedure.

What I didn’t expect was to get to be Dr S’s assistant.  Nurse Nancy in the house! Dr S’s lovely nurse Brenda was on vacation, so Dr S told me to glove up and earn my keep. I couldn’t resist asking him if the gloves were latex-free, even though I don’t have a latex allergy. It’s not much, but it’s all part of how I drive him batty.

I’ve witnessed him bossing Brenda around plenty, and it was funny to be on the receiving end of that. We were in the midst of a heated discussion about something or other, and he started ordering me around right away.  I reminded him that it’s nice to be important, but it’s important to be nice. He loved that one. Really. My poor sweet friend asked us to stop fighting and please talk about something sweet, like puppies or Easter bunnies, since Dr S was waving a giant needle around as she lay helpless in his wake.

He told me to hold the bag of saline a certain way, so he could jam the giant needle into it and fill up the king-size syringe to then insert into her tissue expanders and fill them up, and I couldn’t resist doing it the wrong way, just to tweak him. Then I realized he was pointing the giant needle at me, coming toward the saline bag, so I decided to shape up. It’s all good fun.

Before we made it into the exam room, she and I waited quite a while in the waiting area (I sure hope this isn’t becoming a trend with Dr S, because I hate to be kept waiting). We were chatting and laughing, and an older lady was watching us. She finally interrupted our conversation to tell me she liked my boots, and to ask if she’d seen me in Dr Darcourt’s office earlier that week. She and I apparently have the same oncologist and plastic surgeon. Small world! She asked my friend and I where we both are in the reconstruction phase, and we compared notes as girls in our situation tend to do.

This sweet lady shared that Dr S had done the TRAM-flap procedure on her 5 weeks ago. I said, hmmm, that’s the procedure he thinks he wants to do on me and I’d love to talk to you about that. Good grief, did that open the gates to a gush-fest on how wonderful Dr S is. This lady and her husband both couldn’t say enough nice things about him. If they said it once, they said it 100 times: “He’s not a surgeon, he’s an artist.”

That’s sure nice to hear. I’ve heard it before, actually, from lots of different people. But it’s still nice to hear. Especially just before my friend and I got called back into the exam room for her turn. It made me give him a little bit of extra grief, just because I know he’s so full of himself. And because I know it makes him nervous to know that I’m talking to his other patients. He’s asked me not to mention the whole infection thing, just in case that unfortunate event is associated with him. Easy enough, as I’d like to forget it ever happened. And easy enough because never in a million lifetimes would I ever believe that it was his fault. I’ve said before and will say again, repeatedly, that man drives me crazy but he took good care of me. The problem is that when someone asks why I haven’t started moving forward on reconstruction, as this sweet lady did, it’s kinda hard to answer honestly. I can always lie and say I’m a big chicken who can’t face another surgery, or I’m indecisive and can’t figure out which option to choose. But neither of those are nearly as compelling a story.

After we concluded our business with Dr S, we ran a couple of errands before meeting some other friends for lunch. And by “ran a couple of errands” of course I mean shopping. We were on a mission to find her a new pair of black boots and I’m proud to say that we found not only the boots but also two other pairs of shoes. I’ve written before about the healing power of new shoes. It’s a force unto itself. She and I both really believe in the power of great shoes. The rest of our worlds may be a crumbly mess, but we’re gonna face it in great shoes.

We spent a lot of time laughing so hard we hurt, and more than one person stopped to look at us and probably wonder what in the world could be so funny. She’s not the sort of person who snorts when she laughs real hard, but I am, and I did it a few times. That’s how you know you’re really laughing. I’ll bet that to the outside world, we look like two normal women: hanging out, enjoying each other’s company and relentlessly pursuing the perfect pair of black riding boots. Probably no one notices that we both have a port bulging out from under our skin, or that we have a much different profile than we used to. I know that no one can see the scars under our shirts, and the newly-etched worry lines on our faces could be from any number of stresses. No one knows that the landscape of our daily lives has a completely different topography now. Instead of just being filled with carpool and tennis and such, it now revolves around doctor appointments, procedures, and research. When we’re out in public, running our errands and getting stuff done, we look like normal people. We get through our days, cross things off our “to do” lists, and take care of our families, just like everyone else. But we do it with a heavy burden. That’s why it was so great to spend the day together, and to ease each other’s burden, if only for an afternoon.


Oh no, not again!

So I have this little spot on the area formerly known as my right breast, which is now known as the right chest wall and was, over the summer, the site of a whole lot of activity. Things have been really calm lately, so I guess it was time for something to happen. This little spot popped up a week or so ago, about the time I started playing tennis again. Because I so enjoyed being back out on the court, and because I really needed to believe that I was finally out of the woods, I tried to ignore it. It wasn’t very big, it wasn’t all that red, and it only stuck out a little.

Well, if I’ve learned one thing from this whole mess, it’s that ignoring a spot in the hot zone doesn’t work. Never. No matter how hard you try. So once this little spot got a little bigger, a little redder, and stuck out a little more, I knew it was time to make the call.

I’ve gotten to know Dr S’s office manager, Marcie, and his nurse, Brenda, really well. Maybe too well. So when Marcie answered and I told her what was going on and I asked her if she wanted to ask him if he needed to see me, she said she wasn’t going to ask because we both know the answer. And yes, she does just lay it out there like that. Personally, I find it refreshing.

My  next check-up with the good doctor isn’t for another 3 weeks, and Marcie said there’s no way he’s going to wait that long to see you, so get yourself on in here. I tend to do what Marcie says. Dr S, not so much, but Marcie for sure.

When Brenda saw the little spot, she made that face. That “I skipped the poker face” lesson in nursing school. That face that makes me want to run screaming out of that building and never come back. So not only did she make the face, but she said he’s probably going to want to biopsy that. Commence running and screaming.

He wasn’t in that exam room five seconds before he hollered at Brenda to get him a syringe and a needle. I said, Wait — a syringe and a needle? Why both? What are you going to do? He looked me right in the eye and said, I don’t know, but I need a needle! A this point, it was too late to run screaming from the building, but I wanted to.

He poked the spot with the needle– more than once — and then used the syringe to try and collect something but nothing came out. The spot appears to be nice and harmless. Perfectly innocent. It’s probably scar tissue, so we’re just going to watch it. Keep an eye on it. See what happens.

Works for me. I’m thinking I’ll be out of there in time to get the cheap rate on the parking. Just wanted to ask him one question though, real quick as he’s out the door.

All I wanted to know was the name of the doctor in Miami who pioneered the technique that he’s thinking of using for my reconstruction. I’ve done a little research, but not much, and wanted to make sure I was headed in the right direction.

I have a lot of questions about this procedure, and it’s a big decision to make now that it’s not as simple as tissue expanders to implants. But I wasn’t going to ask the questions right then, because that’s a conversation for another time. I just wanted to know if I was on the right track in my fact-finding.

If you missed my post on Caring Bridge a while back about the “examine the fat” game I played with Dr S not once but twice, for two times the humiliation, you’re in luck because I’ll be dadgummed if he didn’t want to play it again. And as we all know, whatever Dr S wants, Dr S gets.

(If you want to read the original post, go to http://www.caringbridge.org/visit/nancyhicks/journal/2. I haven’t figured out how to add a link to this blog so if that doesn’t work, go to the old Caring Bridge blog and look at the journal entry for October 6th).

Why that man insists of tormenting me, I will never know. But I think he really enjoys it. Just as I’m wrapping my head around yet another change in the game plan, from TRAM-flap reconstruction to this new Brava technique of building new boobs out of fat that’s been relocated, he throws me another curve ball. Now he’s thinking that maybe the Brava technique isn’t the right option for me after all. Maybe we need to re-visit the TRAM-flap, which means he needs to pinch an inch and see how much building material I have.

I said uh-uh, no way, not again. We have done this twice and I’m still recovering from the humiliation. I’m not doing it again. He didn’t go so far as to say he doesn’t remember, but that’s my suspicion. I guess I should be flattered that my fat is so unremarkable as to render him striken with amnesia not once but twice, but I’m too wrapped up in being humiliated, again.

That man doesn’t take “no” for an answer. I said it repeatedly, and y’all know I’m no weenie when it comes to making myself heard. I told him politely then with some choice words that I wasn’t going to show him again. His response: Come on, it’s not like I’m a stranger.

THAT’S THE PROBLEM! Once you lose the “stranger” status with your doctor,  you move from clinical to personal, in a hurry. I know this man too well and have quite frankly been through enough already and really shouldn’t have to suffer yet another indignity.

However, knowing him as well as I do and having been through as much as I have with him, I know the fastest way to get through the unpleasantness is to just, well, get through the unpleasantness. And that’s how I found myself once again playing the “examine the fat” with Dr S.

And guess what? The result was exactly the same: He scrutinized my belly and said there’s probably enough to make a B-cup. But only on one side. I said, I know you think I’m really demanding, but I insist on having a matched set. We had previously discussed the idea of doing the TRAM-flap for one side, and using an implant on the other side, but I said then and said again that I don’t want to do that. Just seems like asking to be lopsided at some point down the road. He actually agreed with me, which scared me just a little.

So he seems to be leaning toward the TRAM-flap again, and away from the Brava technique. He gave me the website to research, I said, ok fine, we’ll talk about it later. And I thought I was out of there.

As I was checking out with Marcie, though, he called me into his office. It’s not quite like it was being called to the principal’s office as a kid, but a little disconcerting still. He’d pulled up the website and wanted to go over it right then & there. I didn’t even want to think about how many patients were waiting for him.

So we looked at a bunch of photos and I was quite underwhelmed with the results. Maybe it’s because I was perfectly satisfied with the set-up I had, pre-mastectomy. I’ve explained that to Dr S before: that while he does amazing work, and the majority of reconstruction patients whose photos I’ve seen look way better after than they did before, I was just fine where I was. So the “new boobs” as a prize for going through breast cancer, mastectomy and reconstruction isn’t a big draw for me. Excuse me for being underwhelmed.

As if I’m not confused enough at this point, he introduces yet another option: taking the muscle from my back, under the shoulder blades, and using that to build the new pair of goods. We looked at some photos of that, too, but I had one question: how would that affect my serve? Seems to me that slicing the muscle away from an area that is used to torque the body and generate force while serving the ball means bad things for one’s game.  I’m not going through life with a permanently wimpy serve. I’ve suffered enough.