Can somebody please shut off my brain?

Posted: February 17, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , , , | 8 Comments

For the last several nights I’ve been waking up in the middle of the night with questions to ask Dr Spiegel today about my upcoming reconstruction. I like how “upcoming reconstruction” sounds so formal and important, and perhaps a teeny bit ostentatious. As opposed to the reality of a terrifying, bloody mess. But I didn’t have it together enough to put a pad & pen by the bed to actually write the questions down, and now I can’t think of them (anyone have any suggestions? Lemme know. I know there’s stuff I’m supposed to be asking her about but can’t for the life of me find that stuff).

My brain must be working overtime, especially at night, when it should be resting and refueling so it’s ready to assist me with my two most basic tasks: impressing Payton with my trivia knowledge while we watch “Cash Cab,” and helping me answer questions from Macy like, “If a banana is a fruit, where are its seeds?”

I hate those kinds of questions. I really should know the answer. It’s there somewhere, deep in the recesses of my brain, but it’s buried by all this cancer ca-ca. If my brain were being depicted by a pie chart, there would be normal-sized pieces of pie for the kids, the home front, our schedules, tennis, world peace, and such. Then there would be a gigantic piece for cancer ca-ca. 

I hate that the cancer ca-ca takes up such a big piece of the pie. I like pie. But I don’t like this pie.  If only the pie chart were about pie, instead of all that other stuff. That would be a really good pie chart.

My Uncle Wilford (my mom’s older brother) used to say he liked two kinds of pie: hot and cold. Me too. And I hope Uncle Wilford is having a piece of both right now, at a beautifully set table on a puffy white cloud with his two sisters, my mom and Aunt Margie, sitting beside him. All the pie they can eat. And no pizza. Uncle Wilford said he didn’t like pizza because he was older than it. Funny guy. Miss him.

But back to the cancer ca-ca. It fills my brain stealthily, easily, and constantly. I’m usually pretty organized, but it infiltrates. I tend to keep a good handle on the various comings & goings of the members of this family, and rarely do I drop any of the balls I juggle on any given day. Not bragging, just saying. I’m usually up to whatever this life of mine throws at me.  But I’ve been dropping balls lately, and I don’t like it.

Macy was invited to a birthday party recently, and I forgot to add it to the calendar, and she missed the party. Oops. Then I looked right at the calendar to assess the day’s tasks but still forgot to take Payton to his weekly hitting lesson. Drat. Then there was the test I forgot to make sure Macy studied for, and she got a bad grade. She typically doesn’t get bad grades, so it was upsetting for her. Her teacher sent home the study sheet for the re-take, which Macy dutifully put on the fridge with a magnet. I saw it there but it never even registered in my brain, so we didn’t work on it. At all. And then, the re-take was upon us. Macy remembered as we were walking out the door to go to school. Damn, damn, damn. I dropped another ball. I was tempted to advise her to just tell her teacher it’s my fault, and that I’m too busy with all this cancer ca-ca. But I didn’t. I hung my head for a minute, cursed myself out under my breath, kicked a stray tennis ball on the garage floor, then reminded myself that it’s one test in the 3rd grade. Well, technically two tests, since she failed the first one and had to re-take it, but again, let’s stay on point here and recognize that it’s no big deal. I wrote her teacher and note and fessed up, told her it was my fault and that she & I both know that if it were solely up to Macy, she would have aced that test. Her teacher wrote back and said pfffft, don’t even worry about it; as you can tell from the attached progress report, one test isn’t going to bog her down. She will survive, and so will I.

Thank you, Mrs. Motal.

From the time I wrapped my head around this wretched diagnosis, I’ve been determined to do all that I can to ensure that cancer doesn’t become me, doesn’t define me, doesn’t defeat me. Cancer may win a skirmish here and there and may make me feel really crummy; it may open the door for a nasty infection that brought on another epic battle; it may deposit more grey hairs and new wrinkles; and it may cause me to miss a thing or two on the master schedule. Cancer will most certainly cause me some sleepless nights. But cancer will not defeat me. 

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.

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.