Apropos
Posted: February 28, 2011 Filed under: breast cancer, drugs, infection | Tags: 200 Days of Dread, Afrika Korps, breast cancer, cancer battle, hospital, Jim Adler, lawsuit, Mariah Carey, mastectomy, Nancy Brinker, new boobs, pink ribbons, plastic surgeon, plastic surgery, post-mastectomy, Promise Me, reconstruction, Rommell, Super Bowl ads, Super Bowl XLV, Susan G. Komen Foundation, Women's Health and Cancer Rights Act of 1998 6 Comments
Two pieces of news today, all contained in one handy-dandy post. First, this comic made me laugh, even though it’s not applicable to me since I need both sides. Luckily, I don’t have to save up for one or both sides. Thanks to the Women’s Health and Cancer Rights Act of 1998, it’s covered.
So for those litigious souls out there who’ve pestered me to “make sure the doctor/hospital/insurance company/orderly/mammogram technician/parking booth attendant/janitor pays to clean up the mess that infection caused,” you can rest assured that I’m getting what’s owed me, so to speak.
Yes, people have actually said that to me. That I need to make sure somebody else pays for what happened to me.
Cha-ching.
If only it were that easy. Or if only I were that shallow, or had the energy to try and create a lawsuit, then all my troubles would be over.
As if.
I don’t hold anyone responsible for the post-surgery infection any more than I hold the sun responsible for rising each day. Some things just happen. Yes, I know there’s a scientific reason for the sun rising, something to do with the pull of the tides or the rotation of the Earth or some such phenomenon. But that’s not nearly as interesting or titillating as ambulance-chasing lawyers drumming up skeevy lawsuits.
If not for the Women’s Health and Cancer Rights Act, I’d be calling Jim Adler, the “Texas Hammer” real soon. The “tough, smart lawyer.” I bet he could get me top-dollar for my medical misfortune. But I’ll leave him alone for now and let him focus on the important cases, like the nasty 18-wheeler wrecks in the middle of the night.
Thanks to the WHCRA, a federal law says my insurance company has to pay for my reconstruction. The law refers to “mastectomy-related services,” which sounds a lot more exciting than it really is. Wonder if I can campaign to make mani-pedis part of the “mastectomy-related services.”
I first heard about the WHCRA while reading Promise Me, by Nancy Brinker. She’s Susan G. Komen’s little sister, who made the promise to her dying sister in 1981 that launched the global breast cancer awareness movement.
Thankfully, “breast cancer” is now a household term instead of a shameful secret, as it was in the past, and health insurance companies can’t deny the coverage required to fix the problems that breast cancer surgeries and treatment create. I could fill this entire screen with facts & figures, befores and afters, thens and nows, of breast cancer. But instead I’m thinking about the WHCRA.
Because of the WHCRA, I don’t have to worry about whether I can afford to clean up the mess that breast cancer (and its bad-news friend, the post-surgical infection) created. I don’t have to make a t-shirt that says “Will Work for Boobs” or wash dishes at Dr S’s house in exchange for my surgery. As if being diagnosed, going through surgery and dealing with the infection weren’t enough. I’m so glad I don’t have to sing for my supper as well.
The second piece of news is pretty important. Maybe not as important as the WHCRA, but only because that affects a whole lot of women, and this bit of news affects me and me only.
Today, Monday, February 28, 2011 is my 200th day of oral antibiotics.
Yes, you read that right: I have been on oral antibiotics, twice a day every day, for the last 200 days. Bactrim and Minocycline, also known as “these damn drugs,” have been my constant companions for 200 straight days.
I’m not great at math and am too old to waste time trying to get better at things that are useless, and for me, trying to get better at math is useless. It’s just not going to happen. I know I should believe I can fly, touch the sky, be whatever I want to be or some other such drivel as churned out by Mariah Carey and the like, but I don’t believe I can get better at math, and frankly, I really don’t want to get better at it. I’d much rather spend my limited time and energy on other stuff, like playing as much tennis as humanly possible.
But if I were better at math, I would be able to say what percentage of an entire year I’ve already spent on oral antibiotics. Oh, never mind; who cares. Let’s just suffice to say that 200 days is a really, really long time, and if you think otherwise, I don’t want to talk to you. Ever. Or at least until I get off these damn drugs.
If you want to know why I’ve been suffering this cruel & unusual punishment for so long, read this. I just can’t explain it again; I’m too exhausted from trying to do that math and figure the ratio of time spend on these damn drugs verses time not spent on them. Well, here’s the Cliffs Notes version of the story: I got an infection from the tissue expander on the right side after my bilateral mastectomy on May 13, 2010. The infection was (is?) tricky and was hard to diagnose, but we finally learned, in mid-August that it was a mycobacterium fortuitum, which is a wily little bugger that is insidious and hard to kill. The most powerful weapon against this bug is two different antibiotics taken twice a day for a very long time. Like forever.
200 days is a blip in the universe of long-term drug therapy. Every time I feel sorry for myself for still having to take these damn drugs, I remember my infectious disease docs chuckling softly and shaking their heads at my pitiful temper tantrum and infantile whining about why I still need to be on these damn drugs. They tsk-tsk me and handle me with the kid gloves I require of them, then sweetly remind me that many of their patients are on antibiotics for 2 years. 2 years. I’m no math genius, but I’m pretty sure that’s longer than 200 days.
Ok, so a little perspective is good, but still, I feel the need to mark the 200th day of twice-daily drug therapy. Judge me if you must, but consider this: there’s more to taking these damn drugs all this time than meets the eye. Think of the numerous trips to Walgreens to pick up said drugs, along with the other prescriptions I have to take, and the fact that none of them start on the same day, so one of them always needs to be refilled. Thank heavens my sweet oncologist added me to his personal pharmacist’s home delivery service, and now the FedEx man brings these damn drugs right to my front door, all at once. I’m sure they miss me at Walgreens.
There’s the sheer volume of pills I’ve swallowed. Twice a day every day for 200 days is a lot of pills. Again, I’m no math genius, but wow that’s a lot of pills.
There’s also the stress of remembering to take these damn drugs twice a day every day. It’s such a habit for me now that it will seem strange to not be doing it, when that day comes. Strange, but wonderful, too. I can’t wait. Actually, I can’t even think about it because I don’t want to consider how many days I will have been on these damn drugs by that time. But you know I’m going to be counting, right?
And then there’s the issue of what foods don’t mix with these damn drugs. Can’t eat dairy products for an hour before or two hours after I take these damn drugs, because dairy can inhibit the drugs’ absorption. If I’m going to go to the trouble to take these damn drugs, I certainly want them to get into my system and fight that mycobacterium.
And last but not least, there is the scorched earth tendency of the antibiotics to kill the good bacterium in my tummy, along with the bad bacteria elsewhere. I’ve gotten used to the near-constant morning sickness that comes with 200 days of these damn drugs, but I still dislike it. A lot. When the extreme nausea comes to call, no matter what I eat or don’t eat, whether an hour before or two hours after, I feel rotten. And don’t tell me your hard-luck story of how you had morning sickness every single day of your pregnancy, because at the end of that pregnancy, you got the best prize ever: a baby. Well, depends on the baby, I guess; some of them aren’t such prizes in the early days. Maybe the best prize ever is a puppy. To some people.
So by golly, I’m gonna celebrate having made it through 200 days of these damn drugs.
We highlight a president’s first 100 days in office, with either a favorable or scathing review of the job he’s done thus far. If our country can create a tradition based on a mere 3 months, I am well within my rights to celebrate having survived 200 days of these damn drugs. And since we all know it’s 200 days and counting, with nary an end in sight, I certainly will celebrate this milestone. Right now. Today.
I don’t know if it’s a nationwide tradition, but at my kids’ elementary school, they celebrate the 50th and the 100th days of school. Kindergarten especially makes a big deal out of these milestones, as well they should. Macy invited me to come to one of these celebrations and even talked me into wearing matching poodle skirts for the ’50s theme.
And celebrate we did! A lot of those little kindergartners probably don’t know from one day to the next whether they’ll make it in the dog-eat-dog world of all-day school. No naps, no crying allowed, curriculum requirements that increase every year; it’s a jungle in there. That’s why they make a point to celebrate the milestones along the way, like the 50th and the 100th day. Why isn’t there a celebration for the 200th day of school, like there is for my 200th day of these damn drugs? Because the kids only go to school 180 days total each school year. So I’ve been on these damn drugs longer than the number of school days in an entire calendar year. Egads.
Ya know how we just watched the Super Bowl a few weeks ago? On February 6, to be exact. Well, on July 20th of last year, the media outlets that handle the infamous Super Bowl advertising spots were counting down 200 days until the big game. So in July, they’re thinking about selling ads during the Super Bowl, which won’t be played until February. End of July to first of February. 200 days. Curiously enough, on July 20th of last year, when the media hawkers began the countdown, I was in the hospital, for the second time post-mastectomy, with the infection.
Another significant stretch of 200 consecutive days of anything is the so-called 200 Days of Dread: a period from the spring of 1942 to November 3, 1942 in which Germany’s Afrika Korps under General Rommel marched toward the Suez Canal and Palestine, causing Jewish people there considerable and understandable stress. Not to minimize the significance of this event in World History, but yes, I’ve been on these damn drugs as long as the Afrika Korps threatened the Palestinian Jews.
And guess what? I haven’t missed a single dose of these damn drugs in all of the 200 days. Not one dose. Surely there’s a trophy for that.
Turf wars
Posted: February 26, 2011 Filed under: breast cancer | Tags: breast cancer, cancer battle, caring bridge, crazy, DIEP, hospital, mastectomy, new boobs, plastic surgery, Star Wars, surgery, turf wars, Vueve Cliquot 9 Comments
I wish I knew how to make this blog play music. I bet it can, since I’m pretty sure it’s smarter than I am, but I haven’t figured it out yet. I need a jazzy yet foreboding score to set the scene. Think Star Wars theme song combined with Indiana Jones theme Song with a little West Side Story mixed in.
I knew this was going to happen. I was partly dreading it, but a little curious too to see how it would play out. It played out, all right, and yesterday by 10:30 a.m. I was exhausted by it. Thanks to a beautiful bottle of Vueve Cliquot that Trevor presented at dinner last night, now I’m over it.
But it’s such a great story, I must share.
Those of you who’ve been along for the ride since this summer, when I was updating my trials & tribulations via Caring Bridge, know that I have an especially close relationship with my plastic surgeon. I’ve written a lot about the many ways I have tweaked him, and I hope to continue to do so here. In fact, I plan to. I will invent new ways to tweak him if they don’t present themselves organically, because I love him and really enjoy tweaking him. He likes it, too. Trevor and I used to joke while endlessly waiting for Dr S during my multiple hospitalizations last summer that I would write a screenplay when this was all over entitled “Waiting for Dr S.” The title will be “The Tweaking of Dr S.” He always showed up, and he always brought his A-game to my bedside. I love that man.
I had great and ambitious ideas about transferring all my Caring Bridge posts over to this new, improved blogsite but it hasn’t happened. Yet. So for now, if you’re interested in reading (or re-reading) about the tweaking of Dr S, I’ve copied & pasted one of my faves at the end of this post.
As I’ve said before, surgeons and bedside manner don’t always go together. No peas & carrots there.
Because I don’t have enough on my plate or on my mind in the last few days before the big surgery, I had to go see Dr. S one last time. Personally, I though we had covered everything, and whatever we missed I certainly had covered with Dr Spiegel. But Dr S insisted I come back, one last time, to be extra sure everything is covered. I asked a simple question. I just wanted to know how he and Dr Spiegel are dividing up the work involved in this long, complicated surgery. Seems simple, right?
A little background: once we decided on the type of reconstruction surgery, Dr S referred me to Dr Spiegel. (Correction: once the post-mastectomy infection ruled out the easier option of tissue expanders to implants as my reconstruction, the option with which I was left was DIEP. Nitpicky? Perhaps, but I like full disclosure.) I did not want to go see Dr Spiegel. Nothing personal, I had just had it up to here with doctor’s visits, and I didn’t want to add another doc into my personal rotation. I’m 100 percent satisfied with the care I get from Dr S, and don’t feel the need for another doc. I was still under the mistaken idea that I could pretend to be a normal person in the interregnum between healing from the infection and reconstruction. Wrong! There is no “normal” anymore, so no interregnum.
I didn’t want to do it, but I did, and I have to admit, I’m glad I did, and Dr S was right. Yes, I said it: Dr S was right.
When Dr Spiegel told me that she and her assistant usually do the DIEP procedure themselves, but that Dr S was welcome to be involved, I got nervous. He doesn’t like to “be involved,” he likes to be in control; that’s why he’s so incredibly good at what he does.
It sounded so simple coming out of her mouth: She and Jenn usually handle the procedure but if another plastic surgeon refers a patient and wants to “be involved,” he is welcome.
I guess I envisioned two teams working together toward a common goal. Teamwork! Division of labor! Cooperation!
No, instead it might be a little more animalistic than that. 
They are the dogs, and I am the soccer ball. Great.
Back to the simple question: Dr S didn’t quite answer me yesterday when I asked him exactly which part of the surgery he’ll be doing on Wednesday. See, Dr Spiegel may be a bit more experienced with microsurgery (the part of the DIEP procedure that involves harvesting blood vessels from my belly and reattaching them in my chest). This is presumably why he referred me to her. He is exceptionally good at the “artistic” side of plastic surgery, and I know beyond a shadow of a doubt that he will do a phenomenal job.
To me, finding out which surgeon is doing which part of the surgery is a perfectly normal thing. If I hired two laborers to do work in my home, I would ask which one would be doing which part of the job.
Dr S understandably didn’t want to disclose too much, but my guess is that Dr Spiegel do the blood vessel part, and he would do the transferring of skin and sculpting that skin into a nice rack. He also said that any revision surgery and all my follow-up visits would be with him. Ok by me.
Pedey, aka Weasel Dog
Posted: February 24, 2011 Filed under: breast cancer, kids, pets | Tags: adoption, breast cancer, cancer battle, cancer diagnosis, Dana Jennings, dogs, family, hospital, infection, kids, mastectomy, New York Times, Petsmart, puppies 15 Comments
It’s been brought to my attention that I have written about Harry and Cinco the leopard gecko, but not Pedey, the other canine member of our household. Well, excuuuuuuse me.
Pedey, oh Pedey. I don’t even know where to start.
He’s a cutie, for sure. We weren’t planning on getting a puppy, not really. Not that day, anyway. IMHO, any day is a good day to bring home a new puppy, but not everyone subscribes to that point of view, so you gotta tread lightly.
Flashback to May 3, 2008. It was Payton’s 9th birthday. I went to Petsmart to pick up something for Harry and the Houston Humane Society was there with the mobile adoptions. I figured I’d scritch a few pups, get a dose of puppy breath, tickle a few fat bellies, and move on. Then I saw this: 
Oh. My. Gosh. I was smitten. That face! Those floppy ears! The speckled feet! The fat belly! The little white blaze down his nose! 
Did I mention that it was Payton’s actual birthday? 
And that I now really, really, really wanted a puppy?
And that I really, really, really wanted this puppy?
Long story short, Payton fell in love with Pedey (his mama taught him well), and we had to have him. Trevor, being the good sport that he always is, gave in, even though we already had one dog too many for him. Payton and I reasoned that Harry needed a dog, and since it was almost summer, the kids could help take care of this puppy.
Welcome to the family, little guy.
I think you’re going to like it here. We have a mentor for you named Harry. He’ll show you the ropes. He makes the mean face sometimes, especially when he has a chewie, but just ignore him.
We’ve got a best friend lined up already (Snoopy), a pool should you become a water dog, lots of toys & treats, and unlimited belly rubs.
It took us a while to come up with the right name for the new guy.
Since he was officially Payton’s dog, Payton got to have the final say. And he decided on Pedey, after his favorite Red Sox player, Dustin Pedroia. The dog is nothing like his namesake: he’s cowardly, lazy, and clumsy with a ball. But the name stuck.
He settled right into our life and weaseled his way into my heart. Let me state for the record that I’ve never had a small dog, and I’ll admit, I’ve never quite understood the appeal. Now before you carry-dog lovers out there go ballistic and send me death threats, let me be clear: I don’t dislike carry dogs or their owners. I’ve just never understood the benefits. 
Now I get it.
He was of course the cutest puppy ever. (I can say that because Maddy, the best dog in the universe, has gone on to her Great Reward, and because we adopted Harry at age 2 and never knew him as a puppy.)
He likes to snuggle more than rough-house. He would rather sleep than do just about anything else (preferably in my lap). 
We call him The King of Comfort, because he always manages to find the most comfy spot available. 
If he’s not fast asleep in a prime spot, he’s camped out under my desk chair. 
Sometimes his legs or tail peek out from underneath the chair, and sometimes he’s completely hidden and I forget he’s there until I scooch the chair back and accidentally scare him half to death.
Sometimes he gets in the chair, right behind me. When he was tiny, it worked out just fine. But now he’s a little too big for that, but he still tries it sometimes. 
He still manages to fit. Mostly.
He likes to make a nest when he finds a comfy spot for sleeping. He will either wedge himself tight in between pillows & cushions, or get himself wrapped up in blankets & comforters. He will also stay in bed until he’s good and ready to get up, instead of leaping up the instant my feet hit the floor, like Harry does.
We don’t know what kind of dog he is, besides lazy & shiftless. Beagle, maybe? He has short, coarse hair; very different from the labs’ hair I’m used to. He has a very wrinkly brow and often looks quite contemplative. It’s mostly for show, though, because he sure doesn’t seem very smart. 
He’s not all that well-trained, either, because he was so cute we were always holding him instead of schooling him to sit and stay. 
He never did learn to love to swim, like the other dogs do. He doesn’t really even like for his feet to get wet, hence the need to be in my lap as often as possible.
Dana Jennings, a wonderful writer for the New York Times said, “Good dogs – and most dogs are good dogs – are canine candles that briefly blaze and shine, illuminating our lives.” I’ve had 4 dogs in my adult life: Maddy, the best dog ever in the history of all dogs. So good, I still get teary when I think of her, several years after her death (and y’all know I’m not much of a crier). So good that the urn of her ashes is on a side table in my bedroom, her name engraved in a simple, beautiful script, the urn way too small to contain all the love and memories she provided. Then there was Lucy, who we got to keep Maddy company. Her canine candle was pretty dim, and there is no urn for her. Then came Harry, and now Pedey. A short but very full doggie history.
Pedey was so happy this past summer, when I was convalescing from surgery and multiple hospitalizations. I don’t usually lay around much, but I had to then. And he loved it. He was always right by my side or in my lap, sleeping away. We joked that we should have snuck him into the hospital, so he could have slept on my bed with me there.
Well, Pedey, rest up; in a few days, I’ll have some more down-time. Are you ready?
The to-do lists
Posted: February 23, 2011 Filed under: breast cancer | Tags: breast cancer, cancer diagnosis, gold medal, hospital, mastectomy, microsurgery, nesting, new boobs, tennis, to-do list 4 Comments
The title says lists, plural, because I’m a realist and have never figured out how to willfully deceive myself. Other people I have no problem willfully deceiving, but myself, not so much. I have a list of what I want to get done, and another for what I will probably get done.
The countdown is on to my surgery. Yikes. One week from today, I will be at the hospital. Yikes. Reconstruction is a much-anticipated thing for most breast cancer patients. It means getting your body back (in a new, sometimes improved form). It is voluntary and scheduled whereas a mastectomy is required and imminent. It is symbolic of having made it, having endured, having gotten through the worst part. It is also scary, for sure. I don’t recall being scared before the mastectomy in May. Maybe I was, but have blocked it out. Now that I’ve seen photos of other mastectomies and have a better understanding of how the procedure is actually performed I certainly could be scared, but being scared after the fact isn’t very effective.
I’m guessing I don’t recall being scared about that surgery because things moved very fast (3 weeks from diagnosis to being wheeled into the OR); I was wrapping my head around the fact that I had been diagnosed with cancer at the tender age of 40 and with two young kids at home; and there were a ton of things to do to prepare. 
Not just the battery of tests, but the nesting. That nesting really should be an Olympic sport. I know I’d have to beat out some OCD pregnant women, but I think I could bring home the gold. 
I’m not nesting this time around. I’d maybe only get the bronze. And it would probably be a bit of a pity vote. I just haven’t been putting in enough time flitting around the house, cleaning out closets, organizing the pantry and re-folding every blanket in the linen closet.
Since becoming a repeat customer at the hospital, I know what’s in store form me next week: the scratchy sheets, the one-size-fits-someone-giant gowns, the smell, the noise, the yucky food, the parade of nurses in & out of the room, the abundance of tape stuck to my body, the JP drains, the pain, the nausea, the lack of peace & quiet.
Ok, maybe I’m not scared but annoyed. I’m not so good at sitting still and being dependent. And I have a lot of that coming up. So I distract myself by making to-do lists. It makes me feel better. There’s something very satisfying about setting goals and crossing things off the list.
Things I want to accomplish before surgery:
(insert long list here)
Things I will actually get done: play a lot of tennis.
Now that’s a good list.
Front-page news
Posted: February 9, 2011 Filed under: breast cancer, drugs, Uncategorized | Tags: breast cancer, breast surgery, cancer diagnosis, Houston Chronicle, infection, lymphedema, mastectomy, MD Anderson, New York Times, radiation, recovery 3 Comments
An article on the front page of the Houston Chronicle today says that big changes are in store for the breast surgery required for cancer treatment. A new study from our own local attraction, M.D. Anderson, found that women with early stage breast cancer don’t need to have their lymph nodes removed, even if the nodes are cancerous.
This is big news. Breast surgeons are calling it “practice-changing” and proof of the old adage that “less is more.” Dr Kelly Hunt, surgery professor at Anderson, says, “The study shows that we don’t have to take out huge swaths of tissue, that we can avoid aggressive surgery without any effect on outcome.” Personally, I’m a fan of anything that avoids removing huge swaths of tissue. Ick. Ugh. Yuck. Been there, done that. More than once.
This new study pokes holes in the century-old belief that a surgeon’s job was to cut out every bit of the cancer, and found that removing the lymph nodes didn’t give women any benefit over radiation and drug therapy alone. The prevailing science has been that removing lymph nodes helps prevent the cancer from spreading and/or recurring.
Removing the lymph nodes from the armpit area is a hot mess waiting to happen. You’ve got the cosmetic issue of ending up with a concaved surface. You’ve got the potential for infection (ahem). You’ve got the risk of lymphedema, which is painful swelling in the arm that cannot be cured. Anyone who has ever seen a photo of a limb swollen to multiple times its normal size because of lymphedema knows to fear this condition. I’ve met several breast cancer survivors on the tennis court since I returned to the game post-mastectomy and post-infection, and more than one of them played with a compression sleeve (a form-fitting garment that goes from wrist to shoulder) to stave off lymphedema. Tammy, my dear lymphedema specialist, made me take one of those bloody things home to keep in my drawer, “just in case,” because the really stinky thing about lymphedema — aside from the fact that there’s no cure — is that it can come on at any time. Women have gotten it years after a mastectomy, with no prior symptoms.
If you want all the nitty-gritty details of the study, you can read the New York Times article, which goes into a little more detail than the Chronicle’s story. The Chronicle does get credit for providing more info about Anderson’s role in the study. We like to root for the local team. Seems 100 of the 891 patients in this study were from Anderson, and the researchers originally planned to expand the study to include 1,900 women, but shut down the study before that happened because the results were so overwhelmingly conclusive.
I like overwhelmingly conclusive results. You don’t find a lot of them in medicine. I’ve learned that the hard way in my “cancer journey.” I’m a black & white, just-the-facts-ma’am kind of girl, and I found myself smacking my head against a wall more than once in pursuit of a concrete, yes-or-no type answer. In medicine, precious few of those exist. I suspect that’s why it’s referred to as “practicing” medicine.
In fact, Dr Grimes, my infectious disease doctor, has spoken of practicing the art of medicine as much as the science of medicine. I really like the way that sounds, as if it’s so very civilized and full of aesthetic value. In reality, it’s a balancing act of drug therapy vs side effects; of benefit vs cost; of how far can we push the body yet still maintain the integral strength necessary to fight the disease.
In other words, there is no overwhelmingly conclusive answer. And sometimes the doctors don’t know themselves what the right answer is. That’s why it’s so nice when a study comes along that says, yes, for sure this is the right thing to do.
I’m super happy about this big news. I hope it lives up to its potential to make life easier for the 200,000 women a year diagnosed with this breast cancer. And I really hope that it’s just a teaser of what big breakthroughs in breast cancer research are yet to come.
PTSD
Posted: January 21, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: breast cancer, Greece, infection, mastectomy, politicians, PTSD, recovery, soldiers, stress, tamoxifen, war 14 CommentsWhile brushing my teeth and inspecting the bevy of brown spots on my face (thanks, crazy hormones), I noticed something that made my heart pound, my stomach drop, and my blood run cold. 
Not to be overly dramatic here, but I was scared. Only for a second, but really and truly scared.
I saw a small dark spot on my jammies top, right near my personal “ground zero” or also known as my right chest wall, site and host of the Mycobacterium Olympics 2010.
My first, terrifying thought was that fluid had leaked from my skin at the site and soaked a spot on my shirt.
Not a good thought.
Turns out it was a small piece of fuzz from a red blanket, but it was in just the right location and was just enough darker than the pink jammie top to look like a wet spot.
It’s been 5 months since my last hospitalization for this wretched infection, yet it still has the power to scare the tar out of me and render me speechless, breathless & frantic for a moment at any given time. There has been (knock wood) absolutely no sign of said infection for those 5 glorious months, but it still freaks me out.
I’ve joked before about having PTSD — post-traumatic stress disorder. Now I’m thinking it’s no joke. Then I see this article, from the Telegraph online. Kismet? You betcha.
The article starts with a catchy lead (y’all know I’m a sucker for a good lead): “The debilitating disorder is often characterised by agitation, anxiety, depression, nightmares, flashbacks, and mood swings. It is more often associated with soldiers returning from battlefields who have been shell-shocked by their experiences.” 
Ok, I admit when I read it, I thought “flashbacks” meant “hot flashes” for some reason. Perhaps because I was suffering from one (hot flash, not flashback) at the moment I read that sentence, and my brain went a little wonky from it.
But here’s the important part: a new study (I also love new studies) has found that women diagnosed with breast cancer have an effect similar to PTSD. Researchers site the effect of diagnosis combined with all the unknowns (surgery? chemo? recurrence? etc) equaling a good chance of developing PTSD. They studied 331 women in a Greek hospital and found that 45 percent showed signs of PTSD. What they did not disclose, however, is how they came up with 331 as their sample size. Inquiring minds would like to know. That seems like an odd number to me, no pun intended. The findings were presented at the Impakt Breast Cancer Conference in Brussels. Now not only do I wonder about the 331 women, but also who in their right mind would spell the name of their conference incorrectly? Impakt? Really? Or is that how “Impact” is spelled in Brussels? Why doesn’t the article tell me these things???
Last year there was a similar study done on the possibility of PTSD in heart attack victims. Seems 1 in 6 heart attackers (16 percent of those studied) suffered from PTSD, while some 18 percent of them exhibited symptoms.
Those kinds of statistics confuse me. Does it mean that 16 percent of the total group studied had full-blown PTSD, while another 18 percent of the same group just had some symptoms? Regardless of the answer to that question, it’s interesting (to me, anyway) that the percentage of breast cancer patients suffering PTSD was so much higher than the percentage of heart attackers who suffered.
Anyhoo…
I’m not a researcher and am not involved in any groundbreaking studies, but I’d guess it’s not just breast cancer that renders its victims full of PTSD. What’s really scary is that women still show signs of PTSD even if their “cancer journey” is complete, with successful treatment and remission of the dreaded disease.
Uh oh. So it’s not enough to accept the diagnosis, endure the surgeries and/or treatments, decide on reconstruction, and monitor our health ad nauseum. We also have to slay the disease, but live with the resulting monkey on our back.
Suck.
They also found that women still suffered PTSD and had a poorer quality of life three years after diagnosis and treatment.
Double suck.
I’m imagining fast-forwarding to 2013, when let’s assume for the sake of this argument my infection is a thing of the past and I’m cruising through life with new girls. Euphemistically speaking; I’m not ditching all my friends and finding new ones. I like ’em all too much to ditch ’em.
Let’s imagine that my “cancer journey” is complete in 2013, except I still take my daily Tamoxifen and see my oncologist every 3 months and get body scans quarterly. I am, for the most part, done. But I’m still going to have PTSD? And a crappier quality of life?
The researchers, from the Panteion University of Athens, warn that doctors should watch out for the signs of the condition when they are treating patients with breast cancer. Those Greek people are smart, gorgeous, and all-around awesome, and everyone on Earth would be wise to listen to and emulate them.
They warn: “Knowing that breast cancer patients are susceptible to PTSD, it might be necessary for the field of medicine to create a plan in assisting cancer patients that takes into account the entire spectrum of a patient’s experience with the illness.”
Emma Pennery, from the British charity Breast Cancer Care, said: “The principle that women, and men, will have an ongoing risk of anxiety and depression following a diagnosis of breast cancer is well known, and there is a range of national guidance in the UK which covers the role of health care professionals in providing ongoing emotional support to patients. ”
I’m curious about that “range of national guidance” and wonder if it will make it across the pond. I certainly haven’t gotten any national guidance in all this. That said, if some form of it came my way, I’d probably scoff at the bloated, partisan jibber-jabber as something dressed up to look valuable but in reality is just an oily politician’s idea of pandering to me and those in my shoes.
But that’s probably just the PTSD talking.
Healer
Posted: January 7, 2011 Filed under: breast cancer, literature | Tags: blog, body, book review, books, bra, breast cancer, Carol Cassella, champagne, DCIS, healing, hospital, infection, invasive, mastectomy, miracle, post-mastectomy, reconstruction, recovery, survival, Texas 4 CommentsThe body is a miracle, the way it heals. A factory of survival and self-repair. As soon as flesh is cut, cells spontaneously begin to divide and knit themselves into a protective scar. A million new organic bonds bridge the broken space, with no judgment passed on the method of injury.
Wow. That’s pretty prose. I wish I had written it.
I’d love to claim it as my own, but that would be wrong, and Lord knows I need the great karma wheel to turn my way. I can’t afford to tempt the gods of fate, as they seem to like toying with me.
Carol Cassella wrote that prose. If you’re a fiction fan and don’t know her work, I encourage you to get her books sooner rather than later. Whether you run to the bookstore or download onto your e-reader, get on it. You won’t be sorry. She’s an anesthesiologist-turned-author whose first book, Oxygen, is one of my all-time favorites. Her second book, Healer, wasn’t quite as good but I gobbled it up in hopes that it would be. I liked her right off the bat, because she’s a Texas native and a Duke graduate. A girl after my own heart. She’s also the mother of two sets of twins (!) and how she got anything done, much less wrote 2 bestsellers, is a mystery to me.
I read Healer this summer, while I was trying to heal. I was struck by the passage above, and loved how dramatically it introduces the book. From the very first sentence, I was hooked. While I certainly didn’t set out to turn this blog into a space for book reviews, sometimes things happen that way, and I’m an equal-opportunity blogger, so there we are.
As a physician, Cassella understands the intricacies and magic of the human body. As an author, she’s able to capture that and express it so that someone like me, an impatient patient, can read it and say, yeah, that’s right–the body is a miracle!
I needed that reminder. I was so focused on wanting my healing to occur faster, I didn’t realize that the fact that it was happening at all was amazing.
Equally amazing is the education this experience (e.g., the “cancer journey”) has provided. I’ve learned a bunch of lessons I never wanted to learn, such as how utterly unfair life can be. I’ve acquired skills I never thought I could and hope to never have to use again. Anything involving packing a wound or administering IV drugs at home falls into that category.
I’ve certainly learned a new vocabulary. Not just the new definition of “normal,” either. Things like nosocomial (originating in a hospital, as in a nosocomial infection). Like debridement (removal of foreign material or dead tissue from a wound in order to promote healing). Like aromatase inhibitors (drugs like Tamoxifen that lower estrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into estrogen). Like oophorectomy (surgical removal of the ovaries).
I’ve learned how to get a good night’s sleep in a noisy hospital. I’ve learned the difference between DCIS (ductal carcinoma in situ) and invasive breast cancer, and that they’re both plenty scary. I’ve learned that an injection can leave a bruise for close to 3 months. I’ve learned that the practice of medicine is both a science and an art. And I’ve completely forgotten what it feels like to wear a bra.
Dear Santa,
Posted: December 22, 2010 Filed under: breast cancer, cancer fatigue, drugs, food, infection, kids | Tags: Bactrim, baseball, Biaxin, bloodwork, bone scan, BRAC, breast cancer, cancer diagnosis, Cefapime, champagne, Christmas, Christmas list, Cipro, collection agency, CT scan, dogs, ER positive, flat chest, genomic testing, good girl, health insurance, HER2 negative, home health, hospital, Houston, infection, infectious disease, injections, IV antibiotics, kids, L-Dex, lymph nodes, mastectomy, minocycline, MRI, PET scan, plastic surgery, post-mastectomy, PR positive, Santa, survivor, tamoxifen, Vancomycin, wound care, wound vac, x-ray, Zyvox 4 Comments
I’ve been a pretty good girl this year. I’ve smiled at fussy babies in checkout lines at HEB. I did my time at the grade-school class parties (not my scene, to say the least). I called the collection agency back — yes, I really did — when they left me a message saying I owed money on a past-due hospital bill that my insurance company says has been paid. I donated nearly-new clothes & home goods to charities multiple times. I helped out with the school fundraiser, even though I really, really, didn’t want to. I’ve said please and thank you and bring my own bags. I was a big girl and good sport about all the trips and baseball games I missed this past summer.
And while we’re on the topic of this past summer, dear Santa, do ya remember all the hell I went through? It all started on April 27, 2010, when I was diagnosed with breast cancer. Talk about an “aha” moment. The timeline quickly unfolded like this: the rest of April and first part of May were consumed with tests, tests, and more tests: BRAC analysis, CT scans, x-rays, PET scan, bone scans and MRI. In case that’s not enough acronyms for ya, there was also the L-Dex and then the genomic typing of ER/PR positive and HER2 negative. More injections and blood draws than my poor left arm’s veins could keep up with (literally; there’s a permanent knot in the big vein). Countless appointments with the breast surgeon (Dr Dempsey, who is on the “nice” list) and plastic surgeon (Dr S, who may be on the naughty list), and 3 different oncologists.
Meanwhile, there was research to be done and crushing decisions to be made as I prepared for surgery. The phrase “life and death” took on a whole new meaning, sweet Santa. There’s a strange juxtaposition between packing school lunches and signing field trip permission slips while also filling out my medical directive and living will. I learned pretty fast how to act normal when everything around me had been turned upside down. I think, dear Santa, I also did a pretty good job of adjusting and adapting to the new normal. I think, fat man, I’m still doing a damn fine job of that. One quick look at my profile tells you that there most definitely is a new normal around here.
Santa baby, I was a good girl after the double mastectomy and the lymph node removal that left me battle-scarred and weary. I was an especially good girl in the face of the plethora of prescription drugs I could have used & abused. I was a diligent girl when it came to choosing green drink over Diet Coke, all-natural hormone-free yogurt over Blue Bell.
Santa, I was a brave and good girl when the nasty infection set up shop in my still-raw chest wall. I endured the 103-degree fevers, 22 days in the hospital, multiple tissue excisions and untold poking & prodding without much complaint. I missed the comforts of home, my dogs & my kids more than words can say, but I only cried twice. And even then, it was when no one else was around to see.
We don’t even need to recount the 18 days during which I was attached to the wound vac 24-7. I would really like, dear Santa, to permanently erase that memory from my grey matter, por favor. But I would like to remind you that I was a trouper during the home health days, and all those hours that were consumed with wound care and the administration of IV antibiotics. And while I’m at it, can I get a little shout-out for not killing Dr S, even though he probably deserved it?
Oh Santa, I do crave some credit for all the antibiotics I’ve endured — and continue to endure. From the Vancomycin to Cefapim, from the Cipro to the Zyvox, from the Biaxin to the Bactrim and Minocycline. Those last two will be part of my daily routine for a few months yet, but I’m already looking forward to the day in which I don’t have them on my kitchen counter anymore.
So Santa, how about we make a deal? I’ll set out all the milk & cookies you want in exchange for one little thing. All I want for Christmas is to have it easy for awhile.
A Funny Thing Happened…
Posted: December 5, 2010 Filed under: breast cancer, drugs, infection | Tags: antibiotic, breast cancer, champagne, drugs, hot flash, iron, mastectomy, menopause, pharmacy, post-mastectomy, prescription, survivor, Walgreens 3 CommentsI was at Walgreens (again) to pick up (yet another) prescription, and had one of the best belly-laughs I’ve had in a while. Thank heavens Macy was with me, or I might have embarrassed myself, and the pharmacist, even more.
To set the scene: I go to Walgreens a lot. They know me there, kind of like how it was for Norm on Cheers, but without the drinks and witty repartee. I have lots of prescriptions, all of which are on a slightly different schedule, so that I can’t ever manage to go pick up a month’s worth of all my drugs but instead make multiple trips every month.
Usually, there’s either a grandfatherly pharmacist or a host of young female techs. This visit, though, I found a sweet young male tech behind the register, and another sweet young male pharmacist. While these two fellas were plenty easy on the eyes and seemed competent at their jobs, I do prefer the grandfatherly pharmacist because he always calls me “miss” instead of “ma’am.” I know, it’s a farce, and I know I’m way more “ma’am” than “miss” at this stage of the game, but I like it anyway.
The young whippersnappers both referred to me as ma’am, but I’m not going to hold that against them. The young tech went to get my order, and the young pharmacist butted in to ask if I had any questions about my meds. I thanked him but said no, I’m a frequent flyer here, quite the pro at taking these drugs. He couldn’t just leave it at that, he had to be extra thorough and read the warning labels on one of the drugs, either one of my antibiotics (yes, I’m STILL on them both) or my iron supplement, I’m not sure which.
So he looked at the label and asked me, in all seriousness, if I might be pregnant or am breastfeeding. I can’t decide which scenario is most amusing: pregnant me, in all my forced-menopause hot-flashing, hormonalness; or the idea of breastfeeding with no um, breasts. Those poor sweet young men behind the counter didn’t know and can’t be blamed. And I’m pretty sure both were quite horrified when I told them, in no uncertain terms, that both scenarios are quite impossible for me and that any baby relying on me for breastfeeding would be utterly starved to pieces.
We had a good hee-haw about it, and the tech said something about the fact that I look young for a cancer patient. Shows how much he knows: there’s no mean demographic for cancer. The pharmacist said, any age is too young to be a cancer patient. And how.
The Pink Underbelly 
