Always around
Posted: August 29, 2013 Filed under: cancer fatigue | Tags: being done with cancer, breast cancer in young women, cancer fatigue, pink ribbons, psychological effects of cancer, PTSD and cancer 11 CommentsIt’s been way, way too long since I’ve spent any time on this little blog. It’s been a rather busy time around here, with the start of school. Two new schools and a long drive to and fro (the schools to which my kids are zoned correspond with our new house’s location and not the location of the temporary house we’re crashed in while the building proceeds at a snail’s pace) makes for a rather truncated day. Couple that with the fact that high school and middle school start and end on rather opposite schedules (he starts early, she starts late), and I’m in the car a lot. A whole lot.
To those sweet souls who have inquired about whether I’m done blogging, here’s the answer. I’d speculate that I’ll be done blogging as soon as I’m “done” with cancer. Which will be never.
While it’s true I don’t have the “everyday” cancer to deal with anymore, it’s still around. Always around. I’ve moved past the “everyday” cancer — surgery, recovery, wound care, infection fallout, constant doctors’ appointments, sorting through mountains of medical bills, battling insurance, researching treatment pros & cons, yadda yadda — but it’s still around.
Case in point: minding my own business at a red light yesterday making yet another run to or from one of my kids’ schools and I glanced at the car next to me. On the back windshield is a HUGE pink ribbon sticker. I mean HUGE. It took up enough space to make me wonder how the driver sees out that window. And bam! cancer is in my face. I wasn’t thinking about anything cancer-related, yet there it is, always ready to insert itself into daily life. While I recognize the intent behind those who put pink ribbon stickers and magnetic decals on their cars, I don’t know that I will ever get used to the insidious power the dreaded disease has to permeate every aspect of life, even years down the road.
Another example: I overheard a conversation between two ladies at the gym about a mutual friend of theirs undergoing her third lumpectomy. Third. On the same breast. Again, I was minding my own business, sweating like a pro wrestler and sucking wind while I finished up my cardio. As I plucked my earbuds out of my ears, what do I hear over the sound of my own heavy breathing as my heart is pumping and my lungs are expanding and my muscles are burning and my brow is dripping? Cancer. More cancer.
I resisted the urge to insert myself into the conversation and tell those ladies to advise their friend to skip that THIRD lumpectomy on the SAME BREAST and instead strap on her battle gear because this beast is determined to take up residence in her. Cancer is very rude that way. Uninvited, unwanted. Always around.
Race for the Cure, Houston style
Posted: October 1, 2011 Filed under: Uncategorized | Tags: Houston, Houston Komen, pink ribbons, postaday2011, Race for the Cure, surviving breast cancer 12 CommentsMy fair city hosts the largest Race for the Cure in the country. Yep, that’s right — everything’s bigger in Texas!! Today’s race was pretty great. They say a picture is worth 1,000 words, so I will simply let the photos speak for themselves.
Pink porta-potties, of course. (My germophobe self did not use them!)
The best hat award goes to this guy….
The Houston Fire Department was out in full force, walking with these cute shirts.
These 4 young boys had boobies on their minds! Their shirts were in loving memory of a woman named Kathy. I’m sure she’s very proud of these guys.
There were lots of signs in celebration of or in memory of someone. Very powerful.
Christy & me at the start of the race. Ready to pound the pavement!
There were several groups sporting mohawks, but this girl won for best hair.
One of the many groups at the race. This one was in honor of Moni, who I’m assuming is a grandma.
One of several little boys in a pink cape. So sweet!
This gal had the best photos for her “In memory of” and “In celebration of” signs. The photo of her mama made me a bit misty-eyed. And the idea of her gene pool made me fear for her.
I’m guessing this group raised a lot of money for the cause.
This t-shirt was so sweet and so heart-felt, and a great example of simplicity at its best: no neon colors, no bling, just a powerful message that brought me up short.
This guy was not walking next to a women, which made me wonder if she was too sick to race. Hopefully she was off in a group of survivor sisters, laughing and celebrating.
One of the many bald girls rocking the race.
Of course this one made me want to bawl.
Best tattoo award goes to this chick. Love the font and the message.
There were lots of long lists — too many, really. I loved this one that mentioned the best 4th grade teacher. How cute is that?
One of the many fancy carriages we saw. By the end of the race, I wanted to ride in one!
There were lots of guys in pink, but this one in a tutu was one of my favorites.
The “We miss you so much” part of her sign got me, big time.
The balloon archway at the starting line was awesome! Not so great for the environment, but cool.
“Walking to defeat breast cancer” shirts had a beautiful look. Love the font and the flowers.
Lucy E. Payton, I hope you knew how much you are loved! I’m sure your family misses that sweet smile every single day.
Another long list. Love the “me!” at the end.
These shirts in memory of Tina Cullum were sweet. I really like the butterfly, and these shirts prove that you don’t have to have pink to get your point across.
1955-2009 is not nearly long enough of a lifespan.
Some of the nearly 40,000 people on the race course.
Guess who was pushing this stroller? Nana! In her survivor shirt. Go Nana!
I’m assuming this guy’s mom was racing. He was trying to take my picture as I tried to take his — I won!
Cheerleaders had special cheers for us racers today.
I absolutely LOVE this shirt. Can you imagine a world of stage none???
This darling little girl was riding on her dad’s shoulders. I did not envy him.
The rules said no dogs allowed, but this guy must have slipped through.
She didn’t have any hair, but she did have tissue expanders in preparation for implants!
Race route sign. The logistics and details of pulling this huge race off are staggering.
Her shirt reminded us to never, ever give up hope.
A new survivor celebrates her good fortune. Hooray!
Cutest bra, and it’s on a dude!
One of many shirts about boobs. Not sure what her business is, but she’s in it.
This wagon was all decked out, but no rider in sight.
How utterly sweet is this?
Another young boy in a pink cape — fantastic!
Getting close to the finish line, which was crowded with supporters, whooping & hollering!
I cut off the edge of the image, but like the sentiment of his sign nonetheless.
The downside of having the biggest race in the country.
She raised more than $2,000 and got a special bib.
Taxi!
The best part of the race — finishing in the SURVIVORS lane!
Our post-race feast…well deserved.
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 CommentsTwo 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.
Portrait of a survivor
Posted: November 23, 2010 Filed under: breast cancer | Tags: bloodwork, breast cancer, cancer diagnosis, champagne, coffee, CT scan, infection, IV, lymphedema, mastectomy, pink ribbons, port flush, Race for the Cure, reconstruction, recovery, recurrence, survivor, tennis 4 CommentsWhen you think of a breast cancer survivor, what comes to mind? A granny all decked out in pink? A joyful gal in a ball cap crossing the finish line at the Race for the Cure? How about a sad sack sitting in yet another hospital waiting for yet another test? You might think that surviving the diagnosis, the surgery, the treatment(s) and any subsequent complications means you’re done, right? Wrong. You’re wrong. It doesn’t end there, and there’s no prize for getting through it.
Welcome to the next phase of survivorship: the constant vigilance required to ensure the cancer isn’t making a repeat appearance. Although I’m just getting started, I’ll quit my bitching just long enough to say I am grateful that my doctors are vigilant, that I have good insurance, and that I can get the majority of my tests done 10 minutes from home. That said, it’s still a giant suck-fest.
Today’s test is a CT scan to check 2 little spots–1 on my liver & another on one of my lungs. These little gems were uncovered during a CT scan the last time I was hospitalized, in mid-August. No one seems too worried about them because they are so small, but once you’ve had cancer, you learn the hard way that there is no sure thing. There is no guarantee. A spot is a spot, no matter how small, and a spot is never a good thing once you’ve had The Big “C.”
Hence today’s CT scan. I’ve never had an abdominal scan before, so I didn’t know that in addition to the fasting and IV contrast (where they inject dye into my veins), I also get to drink the dye. So instead of my daily cup of coffee (which, by the way is the #1 reason I get out of bed each morning), I had to gulp down two big cups of Sprite mixed with contrast dye. No ice. No vodka. That’s just mean. I don’t like Sprite on a good day, and by good day I mean one in which the Sprite is mixed with vodka. Lots and lots of vodka. The only good thing about drinking these 2 vile cups is that I could have burped loud enough to seriously impress a room full of middle-school boys. Too bad the waiting room was full of old people, who either wouldn’t hear it or would think it was rude to launch into a Buddy-the-Elf style burp.
After the Sprite-fest was the IV contrast. Ugh. I really don’t like needles, but have had enough of them in the last 6 months, whether IVs or blood draws or shots or port flushes, to kinda get used to them, but I still don’t like them. My veins on the left side have been used so much that they rebel. They act nice at first, so right after the big stick, to pierce the skin and enter the vein, it seems as if it’s going to work, but just as the nurse is threading the needle higher into the vein, that vein says, nope, no farther. The nurse typically digs around a while before giving up and moving to the other arm.
Cue the complication: because my infection was on the right side, and because I’m working hard to avoid lymphedema (swelling from surgery or trauma that can be permanent and that is seriously contraindicated with tennis), I’m supposed to avoid getting my blood pressure taken or blood drawn from my right side. But that’s my good side! That vein hasn’t been used & abused so much that it pouts and throws a tantrum like a toddler who’s way past nap time.
Sigh.
Luckily, the nurse was very nice. She listened to my long, drawn-out story about my bad luck on the right side and bad veins on the left, and rolled up her sleeves to try and make it work. Work, it did, with just a little big of digging on her part. After the IV it was time to lay down on the CT machine. No big whoop. No trick there, just suck it up because it’s hard plastic instead of Tempurpedic. And then the fun part: injecting the contrast. If you’ve never experienced this, let me be the first to tell you that if you have to go through this, remember: as the dye enters your vein and travels throughout your body, you will feel a warm, wet sensation. Don’t panic and think you’ve wet your pants. Don’t worry too much about it because before you know it, the “did I wet my pants?” sensation is replaced by a crushing headache and the feeling of wanting to simultaneously vomit and pass out. It’s also ok to want to cry for yo mama. The good thing (!) about all this is, it doesn’t last very long. So before you know it, the “wet pants, gonna puke, but wait I might pass out” feeling is over, the scan is done, the nurse yanks the needle out from your vein, and you are free to go. Come back in three months, though, to do it all over again.
So the survivor vigilance is a lot of work. It’s hard enough to live with a monkey on one’s back, wondering if/when the cancer is going to recur. It’s hard enough to wonder, am I doing enough? Asking the right questions? Worrying about the right issues? Researching the right stuff? It’s hard enough to put complete trust, and thereby one’s life, in the doctors’ hands. They are human, ya know. As schooled and trained and rich in experience and purpose as they are, they’re still human. So as much as I do trust them, there’s always that little voice in the back of my head wondering, what if they’re wrong? What if they made a mistake?
Nobody said it would be easy, but I really didn’t think it would be this hard. That’s why I have this cute little pillow on my bed, to remind me that yes it’s hard, but dadgummit, I am indeed a survivor. Period.