It’s Halloween, and what could be more terrifying (for me) than to find myself eyeball-to-eyeball with the dreaded oral antibiotics? Not much scares me after dealing with cancer and its many-tentacled aftereffects, but these drugs certainly do make me want to run screaming from the building.
Bactrim & Minocycline, the drugs I dutifully swallowed twice a day every day for 267 days, are back. Just a quick 10-day course this time around, as a preventative measure following Thursday’s revision surgery. No big whoop, right?
Uh, not so much.
I gladly received two giant bags of IV antibiotics in the OR Thursday. Levaquin and Vancomycin are the old standbys, and they coursed through my veins Thursday morning like a herd of mighty stallions clearing the path of any wily mycobacterium that might be hanging around after last year’s post-mastectomy infection. IV abx don’t bother me one bit, but the oral ones give me the heebie-jeebies.
After puking my brains out all the livelong day after surgery, I was not ready to swallow those pills. I put it off as long as I could, and had to have a “come to Jesus” meeting with Trevor to make me get back onboard the abx train.
You would think that after taking these drugs for 267 days, a mere 10 days would be a piece of cake.
You would be wrong.
Something inside me seized up and said “Uh-uh, no way, not gonna do it.”
I couldn’t convince myself to start taking these drugs.
Trevor astutely pointed out that instead of seeing this short course as easy, my brain sees it as the equivalent of swimming the English Channel because I’ve used up my lifetime supply of mental and physical tolerance.
He’s clever that way.
I knew I had to take them, of course. I knew the risk of re-infection vastly outweighed the inconvenience of taking the drugs. But I also knew just how awful I was going to feel, and while my rational brain said take the drugs, my irrational self whined like a tired toddler way past naptime.
One dose in, on Saturday, my tastebuds were already shot. I tried to savor one last glass of champagne, to toast surviving yet another surgery and to say salud to my improved shape. But the damage had been done, and my lifetime supply of physical tolerance was exhausted. Cue the nausea, the roiling tummy, the overall puniness, the malaise, and the distinct feeling that something died in my mouth. Nothing, and I mean nothing sounds good to me. Not even Halloween candy. And I really like candy. Especially Twizzlers.
I spent the weekend feeling sorry for myself and wondering how long it will take this time to get back to “normal.”
So far no sign of the elusive “normal.”
Macy sent me off to surgery with her best buds, Froggy and Baby Snoopy. They kept me company Thursday in the triage area while I awaited the arrival of my favorite surgeon and his pack of Sharpies. The nurses who took my vitals and started my IV thought it was so cute that my little girl sent her posse to look after me. I explained that she’s only 9 but she’s wise beyond her years.
Pedey the Weasel Dog kept me company all weekend and happily obliged my sedentary schedule. He’s really, really good at being lazy and laying low, and I’m trying to take a page out of his book.
Today is a very good day, for 3 reasons, maybe more. #1: Macy started two weeks of Fine Arts camp, which she loves (and I’m rather fond of having a few hours to myself while she’s off doing fun projects that someone else cleans up, and by “someone else” I mean anyone but me). While she hasn’t gotten quite this messy in a while, she’s definitely still got it in ‘er.
#2: I did push-ups at the gym this morning. It’s been a long time since I’ve been able to do them, and there’s a bit of pride on the line since I was working out with my 12-year-old son. I wasn’t about to let him see me doing “girlie” push-ups with bent knees, so I tried the real thing, and while it didn’t feel great, I did it. Pre-cancer, pre-mastectomy, and pre-infection, I used to be able to do 50 push-ups like it was nothing, and while I’m not there yet, I’m getting closer.
#3: The article for which Payton and I were interviewed was published in our community newspaper. Corey the reporter was nice, and I think he’s a good writer. He has covered the district All Star games for all the ages, and he’s made the games come alive in his stories. P really enjoyed being interviewed; I like the drama of the article, especially the part in which I’m portrayed as “fighting for my life” (cue the dramatic music here).
It’s a good reminder to be careful what you say, too, because I joked with Corey about P having gotten his mad baseball skills from my side of the family. While it’s true–my dad’s baseball career started with PeeWee ball in 1948 and ended with him playing for the University of Tulsa–I was being smart-aleky, and Corey not only took it seriously but also included that in the article! I certainly don’t want to sound like one of “those” baseball moms. I think my kid is a good player who happens to have some natural athletic ability and a body built for taking some hard knocks. However, I’m under no illusion that he’s going to play ball for a living when he grows up, and his *$#& most definitely stinks.
While I can take or leave the publicity, reading the latest article did make me realize that a whole lot has changed since this time last year. And most of that change has been good. Really good.
This time last year, Payton’s All Star team was preparing for the sectional tournament, which they totally dominated, BTW. But I was fighting another battle against that damned nosocomial infection and was back in the hospital. Again. So after P’s team swept the sectional tourney, they were preparing to go to the State Championship in the lovely Tyler, TX. I remember thinking on that Monday, the day I was admitted to the hospital–again–that we’d get the infection under control, pump in some more vancomycin and I’d be on my way to Tyler.
Yes, I was that delusional.
Instead of the scenario playing out the way I’d envisioned, it went something like this: I was admitted on a Monday and didn’t get out until Thursday. An area that started as a red, streaky site on the mastectomied right chest wall had to be opened up, drained, excised, and packed with gauze. Repeatedly. The packing part was particularly brutal. See, there was a bunch of fluid inside my chest wall from the infection. Dr S cut a track–sans anesthesia, I recall–to open and elongate the drain hole, to let the fluid out. Once the track was there, though, it had to be packed with gauze to soak up all the nasty fluid. It wasn’t a quick process, because the hole and the track were small but had to be completely filled with gauze, for maximum soaking. Thus, a lot of shoving in an already sore, infected, and aggravated area was required. As was a lot of xanax. At one point, after Dr S shoved the gauze into the open wound, my blood pressure was 212/65. That’s a little high for me.
I survived 4 days of intense wound-packing and hard-core IV antibiotics. But just barely. I missed the entire State Championship experience, then put my kids on a plane for summer vacation, that I didn’t get to attend. I did manage to stay out of the hospital for 2 and a half weeks, but had IV antibiotics at home and a home health care nurse packing that wound. I was hoping to have turned a corner after all that (and more than once wondered what it would take to finally kick that infection) but was back in the hospital again the week before school started.
It was not a good summer, to say the least. This one has been much, much better. While the bar wasn’t exactly set very high after last summer, this one is pretty sweet.
To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.
Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.
Then came cancer.
That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.
Until April 27, 2010.
My guardian angels were asleep at the wheel.
I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.
When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids?
They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.
One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.
The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did.
Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.
A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.
Good thing I did, because my healing and happiness were short-lived.
Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.
Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.
She also gave me Baby Snoopy, another coveted member of the “crew,” and my heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.
Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep. That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.
Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.
This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror.
The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.
I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party.
The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.
The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.
I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection.
Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.
The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size.
I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.
Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids.
Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!
My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.
One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.
Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.
School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great. What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show.
August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause.
October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.
We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won.
This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.
As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.
Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.
Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.
The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.
It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key.
One thing I would not miss from the hospital was this chair.
This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.
Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.
But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.
I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.
And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.
If you’re like me, once you read the title of this post, you’d end up with “Don’t Stop Believing” running through your head.
“Hold on to that feeeeeeeeling….”
Yes, we are simple creatures at times, and prone to even simpler suggestion.
As I wrap up the Napa series of blog posts, I reflect back on a fantastic trip, an outstanding weekend, and the kind of memories that would keep me warm on a cold winter’s night if I didn’t live along the Gulf Coast of the great state of Texas. Not that the memories aren’t that good, but that there’s little need for warming around here. Especially with my hot flashes. Thanks, early-induced menopause, because pre-summer in Houston isn’t steamy enough.
Thinking about the trip and preparing to say good-bye to our visitors from Boston today makes me a teensy bit sad. I don’t like transitions. I’m in for the long haul and can work long and hard at a steady pace, but I don’t care for the ups & downs, the twists & turns, the stops & starts. This sentiment applies, for me, whether we’re talking about vacation or illness. Going from my “normal” life to vacation mode takes me a little bit of time. Getting into the vacation frame of mind is a conscious shift for me, even when it’s a vacation I’m looking forward to. Having our friends from Boston here is most definitely something I look forward to, but it still requires me to make that shift in my head.
Now that our vacation with them is ending, I find myself again shifting, from the luxuryof sleeping in on a school day and spending the day by the pool, drinking early and often and into the evening; to hauling my carcass out of bed to pack the kids’ lunches, sign their folders, forge notes about their absences, and getting back to my normal life. I like my normal life, so this isn’t inherently a bad thing; it just required me to shift gears and change my mind frame.
I’ve never been good at handling change, and that may be why I’m not a great traveler. I don’t like the idea of having to decide in advance what I’ll be wearing, and then pack it, taking care to not forget anything. It seems that once I get used to the new location, it’s about time to go home, and then there’s another adjustment to handle. I do it, and without the need for intervention, but it’s an effort.
That’s why this phrase spoke to me:
It was on the wall of the Cost Plus World Market in San Francisco near our hotel, where we popped into for supplies (and by supplies, yes, I do indeed mean champagne) our first night in California. We were at the checkout, clanking bottles and deciding whether to add chocolates to the purchase, when I saw this saying on the store wall. The other shoppers might have thought me a bit mad to be snapping a photo in the middle of a store, but I stopped caring about things like that a long time ago.
The saying spoke to me because I know that Lao Tzu is right. He was a mythical figure in ancient China and is said to be the father of Taoism, so you know he’s smart. His ancient quote about the good traveler retains relevance today because people like me continue to buck the journey in favor of the destination. I know that it’s not about the destination, yet I can’t wait to get there. I will jump through all the requisite hoops along the journey in order to get to the destination, but for me, the destination is the goal. Wrong, I know, but still I persist.
Some say that dealing with cancer gives you greater clarity on “the things that really matter.” Or that having survived cancer, you become more aware of and grateful for the things around you. Then there are the idiot-balls who say that cancer is a gift. To them, I say choke off. This is no gift. Yes, it does afford the opportunity to re-evaluate priorities and habits, but it’s no gift.
I spend a lot of time in my personal “cancer journey” marking off time and accumulating milestones. Maybe that’s a coping mechanism, I don’t know. I do know that I can tell you to the day how long I’ve been on oral antibiotics (251 days), and how long it’s been since The Big Dig (49 days). More likely, it’s because I’m focused on the destination and not the journey. I can’t wait to “be done” with this cancer business: the disease itself, the surgeries, the recoveries, the uncertainty, and the drug therapies. I don’t aspire to ever be free of the worry that the cancer business drops on my doorstep like an unexpected and oversized parcel. It will always be there, in the back of my mind. I liken it to the childhood sensation of rolling your tongue through the newly-created hole of a lost tooth. Your brain knows the tooth is gone, but your tongue can’t resist checking for sure, by sliding through that narrow, slippery, and slightly nauseating space. My brain knows my cancer is gone, yet it can’t resist double-checking.
I refuse to live in fear, however. I don’t want to have any regrets: about life in general, and certainly not in this “cancer journey.” Each decision I’ve made along this “journey” has been nitpicked and examined half to death, with risk and reward calculated to within an inch of their lives. Some decisions have been difficult, and some have been easy, but none have come without a lot of thought.
I heard from a fellow breast cancer blogger who is dealing with an infection, possibly of her tissue expander, just as I did. She’s on IV Vancomycin, like I have been many times. I commented on her blog to tell her that the Vanc works and it will cure her, hoping to offer some support. She replied that she can’t imagine how I endured that process multiple times because it’s so stressful. Yes, it is. No doubt there. And if someone were to ask me how I endured it, I don’t know that I would have an answer. I don’t know how I got through it, other than I just did it. Just gritted my teeth, tucked my head and did it. Because I didn’t see any other choice. Saying “I can’t” wasn’t going to make it go away.
I do like to make myself focus on good things, or to “walk on the sunny side of the street” (thanks, Mom!). Yesterday I wasn’t feeling well, for the 3rd day in a row, and was a little put-out that my “cancer journey” was once again interfering in my fun. I wanted to visit and eat & drink with my friends who were in town, but instead I had to lay down and take a nap. Take a nap. In the middle of the day, and in the middle of my friends’ visit. That made me grumpy, and I was just starting to think about getting out the pity-party supplies.
Then I told myself to shut the hell up, get in the shower and get on with the day. There was dinner to prepare for our last night together and 3 bottles of bubbly in the fridge, so there was no time for a pity party.
While in the shower, I was wondering why the hell my belly incision is still so tight and sore after 48 days, and when in the sam hell it’s ever going to heal all the way so I can take a shower like a normal person, without wincing as I lather, rinse & repeat, and just be done with it.
Then I realized: I AM taking a shower like a normal person. There were no JP drains to deal with. There were no holes in the side of my body to keep dry. There was no dressing over the accessed port-a-cath that had to be kept dry.
When my port is accessed, i.e., has a butterfly needle piercing my skin and the port to deliver medicine, it has to be covered to keep it sterile. The port itself is smaller than a quarter, and the butterfly needle (while really thick) doesn’t extend the area. Yet the whole thing has to be covered with this giant dressing. That’s it above, stuck to my clavicle, shoulder, and neck area. My skin hates these dressing with a passion. The sticky tape irritates my skin as much as Sarah Palin irritates me. After I peel the dressing off, there remains a red, raised outline in the exact size & shape of the dressing.
And yet, I’m sans dressing. That’s a bright side, a good thing to be tallied and counted. I’m also sans sling bag. Not having the JP drains means I don’t have to wear the sling bag, cute as it may be, 24/7. That’s another bright side, and a very good thing.
Yep, it’s cute, and it served a wonderful purpose, and I love my runnin’ buddy for getting it for me. Being able to camouflage the drains by stuffing them in the sling bag, then hide the protruding rubber tubing by the cross-body bag, gave me freedom and kept me from being house-bound.
There’s nothing in there — look, Ma, no drains!! — and that is a reason to celebrate. I’m no longer tethered to plastic bomb-shaped udders collecting all manner of gross stuff, fluid and solid, that my battered body is shedding after yet another major trauma. I don’t have to plan my very limited wardrobe around the bright orange pattern anymore, but now I can do that just because I want to.
I will always be grateful to the sling bag for carrying my drains, and my drugs, in such style. The clear plastic compartment in the inside front is not likely designed for slipping in the essential few pills, but it sure worked well for me. I’ve heard that some people keep their driver’s license there instead. How weird is that?! Instead of my TX ID, featured here are my constant companions Bactrim & Minocycline, the antibiotics for the post-mastectomy infection; a muscle relaxer for the super-tight 17-inch belly incision; and a Xanax for any and all calamities, just in case.
So while this “cancer journey” is far from a gift and certainly does suck, I can still “walk on the sunny side of the street,” look on the bright side, and find moments of goodness contained within as I move forward, always searching for the finish line.
This signpost, sent to me by Jill in the Oakland airport en route from Napa back home, is a good mile marker in my journey. I love that my friends see bubbly-related things and think of me, and I love that no matter where this journey takes me, I’ll have great friends, a sassy sling bag, and plenty of bubbly for the ride.
I was just looking at some info online about Cubicin, my poorly named but hopefully awesome new antibiotic. The heading of the website caught my eye: When you suspect MRSA cSSSI or bactermia—use CUBICIN first!
Well, in my usual headstrong style, I did not use Cubicin first. I like to rebel that way. It’s not much, but it’s all I’ve got these days.
But now I am on Cubicin, because we not only suspect MRSA, we know it, and I’m back to playing by the rules and toeing the line. For now, anyway.
I’ve learned some things. That’s one thing I will say about this “cancer journey” — the education never stops. Just when I think I’ve got it all figured out and have “been there, done that” something new pops up and presents a whole new learning curve.
If someone had asked me last year if I could see myself administering IV drugs to myself at home, I’d have said nope, you’re whacked, there’s no way that’s happening.
And yet, here I am, administering IV drugs to myself at home.
If someone had asked me last year if I could envision a breast cancer diagnosis, a bilateral mastectomy, nearly a month in the hospital, and not one but two teams of infectious disease doctors working to keep a wily infection and its friend MRSA at bay, I would have asked what they’ve been smoking.
Yet here I am, looking at that very scenario.
Life is funny that way. And by funny I mean peculiar, because let’s be honest: there’s nothing funny about any of the things I just listed.
AstraZeneca markets this drug in the US. I’m not sure if Cubicin is the US name for the drug, but whoever named it must have been having an off day. It’s in the daptomycin family, which means precious little except that it adds another notch to my belt. If I were to list all the different antibiotics I’ve been on since May of last year, this post would stretch on and on. Suffice to say I’ve had just about all of them, from Azithromycin to Zyvox, in this long and winding road.
One thing on Cubicin’s website made me laugh: “CUBICIN (daptomycin) is indicated for complicated skin and skin structure infections (CCSI).” Yep, this is complicated all right. I don’t seem to know how to do this any other way. My friend Laura, the transplant nurse, laughs and says, “Nothing about your case has been textbook, my friend.” True, so true.
Cubicin’s website lists the requisite claims of awesomeness along with limitations and warnings. It’s not indicated to treat pneumonia, if you were wondering, nor is it effective for the treatment of left-sided infective endocarditis due to S. aureus. I’m not exactly sure what that ailment is, but I’m sure glad I don’t have it. I do, however, have a problem with the website’s use of “due to” in that construction. Any monkey knows it should be “because of” as “due to” is a temporal phrase to denote time or expectation, not causation. Man, it bugs me when they get that one wrong.
While poorly named and with a glaring grammatical error on its website, Cubicin does have a lot going for it. Namely, the list of side effects is miraculously short. I’ve become well-versed in side effects of multiple drugs (again, part of the education I never knew I’d be getting and really would be just fine not ever receiving).
The worst side effects seem to be anaphylaxis and pneumonia, but other than that, we’re looking at muscle weakness (great, since I can’t exercise anyway why not speed up the atrophy?), peripheral neuropathy, and diarrhea. So if I don’t have an allergic reaction and get pneumonia from this drug, I’ll have weak muscles, some numbness, and be in the bathroom a lot.
That’s a very short list.
There are two things about this drug that are fantastic. Well, three things if you count the very short list of potential side effects.
It is administered once a day, not twice, and it doesn’t require an IV pole from which to hang. This means I’m tethered (literally) to it half as often and while tethered, have complete mobility. Last time I had IV drugs at home, they hung from a pole and I was forever getting tangled up as I tried to move from room to room with them.
I can forgive the less-than-exciting name for Cubicin.
Some of you have asked how this all works, so I’ll tell you. I’ve always wanted to answer viewer mail like David Letterman used to do (maybe he still does, but I don’t stay up late enough to watch him.). Here’s the deal: I have a needle in my port-a-cath that stays in for the duration of the IV therapy. If IV therapy lasts longer than 7 days, the nurses have to change the needle, so they yank it out and re-puncture me with a fresh one.
Not that I’m complaining, but the needle is rather fat, as it has to pierce not just my skin but also the plastic membrane of the top of the port. They call it a butterfly needle, but let me tell you, there’s nothing gentle or fleeting about it. I’ve had my port poked many, many times during this “cancer journey” and in fact, when it’s not in use, it must be flushed every 6 weeks, so off I go to the oncologist’s office to have the infusion nurses prep me like a HAZ-MAT victim, jab the butterfly through my skin, flush everything then yank the needle and patch me up with gauze and tape.
While I don’t mind going to Dr Darcourt’s office for port maintenance (it’s close, parking’s free, and he’s cute), I now understand why Dr Grimes wanted me to come to his office to get started on this round of IV drugs. That said, I will continue to assert that Dr Darcourt’s infusion nurses are better with the stick. Dr Grimes’s infusion nurse, she of the “oh, at least you get new boobs” comment, has a bit of the palsy and visibly shakes. So Shakey comes at me with the butterfly needle, and all I can think is please please please let her get it on the first try, and where is that cocktail waitress, anyway??
Ok, back to business. The port looks like this, but of course it’s under my skin. The thick white tube on the right is sewn into my jugular vein, and the purple part on the left lies just under my skin on the left side under my collarbone. And yes, you did read that right: the port’s tubing is sewn into the jugular vein. That’s how it can empty all the various drugs and dyes into the big gun for distribution throughout my body. When you’ve got an important distribution job to do, the jugular is your guy. Creepy, yes, but very effective and efficient.
So the port is under the skin tied into the jugular, the needle pierces both skin and port membrane, and a thin tubing is attached to the needle with a clamp and a connector cap that attaches to the bag of medicine. It’s maybe 8 inches long, and when I’m not using it, I tuck it in my shirt and go on about my day.
Much more complicated. I prefer the current version; downsizing is good.
The round balls in the new supplies photo are the “bags” of Cubicin, and I have saline syringes and heparin flushes. Gotta flush the port with saline before and after the drug infuses, to keep everything flowing, then shoot in the heparin after the infusion, to prevent any blood clots in the port’s nooks & crannies or in the tubing or God forbid in my body. The heparin is considered a lock, to keep the clots out.
I can hold it in the palm of my hand while it’s attached to my tubing and while it flows into my veins. I can set it in my lap and read my book, or take it with me to drive carpool. If I didn’t still have the dreaded JP drains and were carrying my normal purse instead of the sling bag, I could stick it in my purse and tuck the thin tubing aside and go shopping. Sigh. That’s another life. Never mind.
This drug infuses in half an hour. Once a day. I think I’m in love. Last time I did vancomycin and cefapim via IV, it took nearly 4 hours to infuse twice a day, and I was stuck with the IV pole. This is way better, despite the utter lack of shopping.
As it infuses, the bag starts to collapse and the rod on the inside becomes more prominent. One of the infectious disease nurses said that while the drug is plentiful, the rod looks pregnant, and as the drug depletes, the rod gets its figure back. Too bad the figure-reclaiming doesn’t work that fast in real life.
If you’re wondering how this little bag of wonders works without gravity (i.e., hanging from a pole), I can tell you: it’s pressure-driven. Ingenious. It also has a filter on the tubing that prevents any air bubbles from traveling through the tubing and entering my bloodstream. Last time around, we were warned against air bubbles as if they were the devil incarnate, and I stared at the drugs coursing through the tubing, waiting for my heart to explode, and not from happiness.
One day, when this “cancer journey” is finally over (it will end one day, right? right??), I can envision my heart being so filled with happiness that it might explode. One day.
I just got back from the infectious disease doctor’s office and wow, what a visit. What a day. There’s not enough champagne in the world to soothe this jangled mess of nerves. I don’t know where to start, so buckle up and bear with me.
It started with a phone call this morning from Rhonda from the infectious disease team’s office. She said hang tight, they weren’t going to start any new antibiotics until Wednesday when I have an office visit scheduled. I registered my discomfort with waiting 5 days, and hung up wondering what to do next about a 2nd opinion, when Dr Grimes called me back himself to explain.
It was a bit of a misunderstanding: he didn’t realize I was having symptoms in the newly created breast, which is the site of the original infection (the dreaded mycobacterium, which has waaaaaaaay overstayed its welcome). Once he realized we weren’t talking about a problem with the drain site from the belly incision, he got busy and ordered IV antibiotics and said come in today and start the first infusion in my office.
But first, I saw my plastic surgeon for my weekly post-op visit. He was in an effusively good mood, and entered the room smiling from ear to ear. He was at least 30 minutes late, and came in fully loaded: the first thing he said was, “I’m making up for the fact that last week you were late.”
Uh, yeah, I was 5 minutes late. I said as much, and he started to say something along the lines of it’s ok for him to be 6 times as late because he’s the doctor and I’m the lowly patient, but I cut him off and said, You are NOT that much more important than me, so zip it.
He did. I filled him in on the infection scenario and he had some things to say. He’s persnickety, and I love it. From his standpoint, things look good physically and he’s not super concerned about the new infection but was in agreement with Dr Spiegel that a visit to the ID docs was necessary. He said he wanted to talk to both Dr Spiegel and Dr Grimes today to make sure they’re all on the same page.
So off I went to the med center, again. The one time I don’t have any of my handlers present was, natch, the one time I needed them. More on that shortly.
Dr Grimes, who I adore for his problem-solving skills, rejiggered his schedule to see me so he could get the full story and examine me. Since they worked me in, I was in the secondary infusion room, which is little more than a broom closet. There are 2 recliners and 2 IV poles, a desk & computer and mini-fridge (which had nothing of interest in it, and yes I checked). There were 2 nurses in this tiny space and they and Dr G were stepping all over each other while I was comfy in my recliner. But without a beverage equal to the stress of my day. This room is so crowded that if both recliners were reclined, the people sitting in them (across from each other) would be tangled up. Oh, how I hate small spaces and crowded rooms.
Dr G needed to take a look at the original infection site, now home of the newly created right breast. The older of the 2 nurses, who is mid-50s and easily 100 lbs overweight, said, Oh aren’t you lucky to have gotten new boobs.
That would be my patience coming to a grinding halt.
I said, yeah, that’s what everyone says, which sounds great, but they look like this: and I took off my shirt.
What I see as scar-ridden and jam-packed with misfortune and hardship and pain, medical professionals tend to see as pretty amazing. And yes, going from a completely flat, sunken, and concaved on the right side to two round and realistic breasts is pretty amazing. But I don’t want to hear the “yea, new boobs” line ever again.
The older nurse actually said, in front of Dr G, “Well, at least they’re perky. Mine haven’t been perky in a long time.”
Again, that sound you heard was my fuse erupting and the final straw shattering into a million pieces. I’d trade perky boobs for my old life in a heartbeat. One thing I’ve learned in all this mess: boobs are overrated. Especially the ones that try to kill ya.
I kept my composure, and so did Dr G, because I suppose she was trying to be positive, and Lord knows that’s a tall order in my situation. So, long story short, Dr G ordered yet another culture and said to get started with the infusion.
I’ve had vancomycin a lot. As in, in each of my hospitalizations, and at home. I’m tight with the vanco. Because I still have my port, it’s easy to administer the IV antibiotics, which is good because via IV is the only way to get vanco. It’s a wonder drug that in the past has worked for me, and worked fast.
Can you guess where this is going?
Because my body can’t do anything the easy way, or without complications, or absent drama these days, I had a reaction to the vanco. My old friend coursed through my bloodstream faster than it ever had in the past, and my body said, whoa, slow down this is creepy and we need to take things down a notch.
And by take things down a notch, I mean I started itching like crazy, felt like I had bugs crawling, in my hair, felt my skin burning, and my hands swelled up.
I’m not allergic to anything, and I’ve never been stung by a bee. Before breast cancer and infections entered my life, I had a pretty strong constitution and a cast-iron stomach. Now, however, I’m reduced to an itchy, burning, swollen, bug-infested mess.
I was about 40 minutes into the hour-long infusion at this point, so the nurses paged Dr G from his hospital rounds and he said finish the dose but administer some Benadryl and then start a second, replacement antibiotic, Cubicin. It’s new, similar to my old-friend-but-now-enemy vanco, and supposedly less likely to cause a reaction.
I need a lot more things like Cubicin in my life. The only drawback to it is that it takes about half an hour for the in-house pharmacist to mix up because it’s a giant molecule that takes a while to dissolve. So I had to wait. In the tiny little room. With both nurses, plus another patient who had joined us. He got hooked up to whatever drugs he needs (I tried to read the bag hanging from his IV pole but couldn’t), and promptly went to sleep. And snored through everything. Man, he looked peaceful.
The Benadryl made me kinda sleepy, but I only took half of what they offered because well, I knew it would make me sleepy, and I had driven myself there and had to get myself home. With my hands so swollen I literally couldn’t make a fist.
Luckily, the reaction didn’t progress beyond the itching, burning, swelling and buggyness, and the Cubicin infused without incident. Finally, something goes right today! And of course, now I know why they wanted the first infusion to take place in the office. Being the impatient old pro with home-health issues, I had lobbied to just run over to my oncologist’s office around the corner to have my port accessed, then have the antibiotic delivered to my house and get cracking. Luckily, Dr G is a lot smarter than I am.
So with the second drug infused safely, I was free to go but first had to go drop off the sample of the drain fluid at the lab. Now, “at the lab” at Methodist in the med center means in a different building and a long walk. Half outta my head on Benadryl and still swollen to the point of really wondering if I could get my credit card out of my sling bag to pay the valet, I left Dr G’s office.
With a good-sized box of drugs and supplies to haul with me.
Yep, they sent me home with a party favor: a box full of Cubicin, saline syringes and heparin flushes. I got to carry the box, and my lab specimen, across the Methodist campus.
Did I mention that this is the one appointment I attended unaccompanied? Rotten luck, that. Not only did I have to operate the giant sausages that were my fingers, I had to find my way with my Benadryl-addled brain limping along.
I went to the place I thought I was supposed to go, and tried to leave my lab specimen with a receptionist. She smiled broadly and did a fantastic job of disguising her disgust as I handed her a pee cup full of drain fluid. Kind soul that she is, she redirected me and sent me on my way to the lab, not the registration desk.
Trekked my way to the lab and found it with no wrong turns (hallelujah! this piece of junk day is turning around!) only to find that I was expected to fill out a form and list all the particulars of my insurance card. Which I did not have.
I explained as nicely as I could (which I admit, wasn’t very nice), that I’ve spent more than two weeks hospitalized in the Methodist system, both at the med center and in Sugar Land, and see no less than 4 doctors who are affiliated with said system, and if she can’t find me in the system then she could take the lab specimen and shove it.
Not really, at least not the “shove it” part but I was tempted. I told her I didn’t have my insurance card because I was still attached to my surgical drains and can’t carry my normal purse, blah blah blah. She said whatever, crazy lady; just fill out as much as you can and be gone.
And that’s exactly what I did.
And I managed to find my way back to the other building, to the valet. But on the way, as I was calculating the best way to make these giant fingers work to open my sling bag, I realized I didn’t have a valet ticket. The little blue slip that the valet always hands me in exchange for my wheels. Never got one.
Or did I? Just because I don’t have it doesn’t mean I never got it, and my mind was clicking along frantically trying to remember if I got the blue slip. I really didn’t think so, but clearly after the day I’ve had, I can’t be trusted and need adult supervision.
I remembered something odd about dropping my car with the valet: he asked how long I would be and if I wanted him to park it close. I said, probably 3 hours and I don’t care where you park it, whatever is easiest for you. That’s an odd thing because the valet usually doesn’t say much but hands over the blue slip. So I hauled myself and my box o’ goodies to the cashier to confess that I don’t have a ticket and was about to launch into a rousing speech of, I don’t care how much it costs to get my car out of hock, I just wanna go home and I wanna go now. I was a little worked up. Thankfully, the speech wasn’t necessary, and when I told the cashier my tale of woe, i.e., that I never got a ticket, she simply said, go on outside.
I guess sometimes the valets give ya a freebie. But then I’m left with the quandry of not exactly remembering which valet took my car without giving me a ticket, and not knowing for sure if he was giving me a freebie or if he forgot or I lost it or what. And the bigger question was: how do I let them know that I have no ticket, haven’t paid, but still need my car?
Again, I needed my handlers. In the worst way.
After a few minutes, the valet that I suspected was the one but I wasn’t 100 percent sure motioned to me and asked if I was ready for my car. Um, sure, yeah, that would be why I’m standing in the valet pick-up/loading zone area. He said navy Tahoe, right? I said yep, and he fetched my car, which sure enough he had parked close, as in right around the bend–not on the roof, or across the street, or wherever they usually park. He is officially my new favorite, and I’m very glad that when confronted with the choice between a single $1 bill and a $5 bill, I gave him the 5 for a tip. Still made out like a bandit since I didn’t have to pay for the parking at all. And it’s a small miracle that my over-inflated fingers were able to work at all, but thank goodness they did so that nice man could get his tip.
The ending to the whole saga came once I was in my car and on the road home, finally. Still a little itchy, really sleepy, way exhausted, fingers at least 5 times their normal size, but on the road home. The phone rang, and it was my plastic surgeon’s nurse, calling to tell me that he talked to Dr Spiegel and they both agreed that it was ok for me to go ahead and get the IV infusion from Dr Grimes.
Uh-oh. Were they expecting me to wait and get their permission or blessing on that? I had no idea. Good thing they were all on the same page.
Was it really just yesterday that I blogged about how I rarely have trouble coming up with a topic about which to blog because my medical life is such an extreme cluster? Yes, I believe it was. Is it weird to quote yourself? Hope not, ’cause here goes: “…the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.”
Really??? Ya think? I especially like the “flare-up, break-down, or blow-out” part. I really appreciate a good turn of phrase, even when it’s describing my own hot mess.
Although I would love to parlay this instance into a new career as Madame Z, the all-knowing and all-seeing teller of fortunes, I know I’m not prescient. Oh how I wish I were, and I could see how this complicated tale would end.
I got some news yesterday that well, for lack of a better word, sucks. Just sucks. This week has not been good. I could blab on about all the reasons it’s not been good, first and foremost my own deranged impression that by this point, 3 weeks post-reconstruction, that I’d be on the mend and getting back to my normal life. Hahahahahahahahahahahahahaha. So funny. So deranged. So sad.
I won’t keep you in suspense, although the childish side of me thinks if I wait a little longer to spill this bad news, it won’t be entirely real. There is a moment of suspending the two worlds, the wished-upon-a-star-for-best-case-scenario and the hard-core, cold reality of bad news crashing through some already pitifully low reserves of cheer and optimism. That moment before speaking or publishing the reality of the latest bad news is precious, as it allows me to believe for just a moment that in this 50-50 shot, the odds may finally turn out to be in my favor. I’ve had some statistically unlikely things happen (cancer diagnosis at age 40, no family history, post-mastectomy infection), and I’d like to think that the great karma wheel is spinning my way.
But alas, it is not.
The news of my latest pathology report tells me that the giant karma wheel is not only refusing to spin my way, it’s come unhinged and is crashing toward me.
Smoosh me now, great wheel. Just get it over with.
The week began with a needle aspiration and the culturing of fluid to confirm or deny my suspicion that the infection was presenting itself. Dr Spiegel held out hope that these symptoms were just part of the normal healing process after a long, complicated reconstruction surgery. She wasn’t around this past summer for the infection saga.
The pathology confirms that I have a MRSA staph infection. In addition to the mycobacterium that is my ongoing nemesis. If you feel so inclined to learn a bit more about these bugs that make me want to cuss nonstop and invent new ways in which to curse and rant, just click on one of the handy links. If the text is a color other than black in this workspace, you can click it and get all the info you can hold on whatever fascinating topic is at hand. Today the topic is bacteria, followed closely by cussing and sticking one’s head in the oven.
A staph infection is sucky enough, but an MRSA is worse. It’s drug-resistant and hard to treat. The mycobacterium is very drug-positive (like me) and not hard to treat, but hard to kill. It moves slowly and reproduces slowly, so it doesn’t often avail itself to the stream of antibiotics entering its domain every 12 hours. The drugs keep coming, but don’t break through very often. Hence the need for the long-term antibiotic regime. 225 days long and counting. It’s also hard to tell if it’s cured. The best way to tell seems to be stopping the antibiotics and waiting to see if the symptoms appear.
I’m still waiting to hear what my infectious disease team plans to do about this latest development, but suspect it will involve adding either vancomycin or zyvox to my minocycline & bactrim habit.
No, we don’t know where this staph infection came from, if it was contracted during surgery or was already there. I think it was already there. Way back in July, when the post-mastectomy infection hit the fan, before the mycobacterium was diagnosed, many cultures were run. Myco is very hard to diagnose because it’s so slow-growing; it can take 6 weeks to present in a culture. By the time it’s diagnosed, you can be all better or really sick. I was really sick. I did have a staph infection at some point this summer, so it’s possible that this is the same one and it’s been lurking around waiting for a good opportunity to become more of a nuisance. Statistically speaking, it would be crazy rare for one person to have contracted not one but two infections during surgeries, but stranger things have happened. I don’t know enough about infections to know what the relationship is between the staph and the mycobacterium: do they travel together or is one opportunistic, presenting itself when its predecessor has already set up shop?
What I do know is that the new infection is a coagulase-negative piece of junk that not only makes me feel bad physically but also worries me. A lot. I try hard not to borrow trouble and to keep the “what ifs” at bay, but adding a new infection to an already crowded field makes me worry. And the fact that the new infection is creating physical symptoms in my newly created breast is very worrisome. Dr Spiegel spoke on Monday of worst-case scenario being the need for a simple outpatient procedure to excise infected tissue, clean and debride, and stitch it up neatly. She said the biggest downfall there is that it creates another scar.
Uh huh. Yeah. As if I’m worried about another scar. Rand McNally would love a chance to copy the lines and tracks and planes that the scars have created on my chest. Any my belly. And even my poor little belly button. Sweet little belly button was just minding its own business when it was callously sliced off and stitched back on in a new location. Poor baby.
So suffice to say, another scar is the least of my worries. And having been down this road before, I know that there’s nothing simple about excising and debriding infected tissue. Especially when that tissue has already been sliced & diced, carved and stretched and pulled practically into nonexistence.
I really hope I don’t have to do that again.
Last summer, in the heart of the infection mess, I’d had it. I was done. I didn’t think I could take any more. A cancer diagnosis and a bilateral mastectomy 3 weeks later followed by a nosocomial infection was too much. 23 days in the hospital, 3 additional excision surgeries, and more missed opportunities of summer fun and precious memories that I care to recount here.
This latest surgery, the reconstruction, was supposed to be the end of all that. It was supposed to be a symbol, a port in the storm, a beacon of hope. I’m not a big believer in panaceas, but this was supposed to be it for me. One last excision and debridement of the infected tissue, exactly 6.2 liters of antibacterial wash, healthy tissue transplanted from my belly, AND a brand new blood supply, a la microsurgically transplanted blood vessels was supposed to fix all my troubles and get me from victim to survivor.
What a load of hooey.
I’m gonna have to invent some new cuss words.
Amy says I need to post an update, and she’s always right, so here I am. Saw Dr Spiegel this a.m. and she’s not overly concerned with the fever, the firmness, the divot or the discomfort down my right side from the faulty drain. The right drain does indeed seem to be faulty, and she supports the unpopular (with me, anyway) opinion that the left drain is compensating for the right. Both drains are staying at least another week. Boo hiss. I wanted to start crying right then & there, but I’m way too proud for that.
She did culture the drain fluid and is looking for answers to my conundrum. She suspects a pseudomona and we hope to know for sure soon. She dug around on my new right breast A LOT (and I do mean dug, as in with a sharp object in hand), looking for fluid to collect and culture. No fluid to be found, even after she opened up the suture line AND tried to aspirate with a very long needle.
No fluid is good news but the very long needle was bad. I told the doc it would be a good day for a Xanax but I didn’t have one on me, not even in my “bag of tricks” as Amy calls it. No, since I’m still carting around these dumb drains, I have my little bitty sling bag for a purse instead of my real purse, which happens to be fully stocked. Grr.
Dr Spiegel suggested I pop into the office of Dr Grimes, my infectious disease guru, since he’s in the same building. He was at another hospital but we talked to his nurse Rhonda. She took a lot of notes and said she’ll get in touch with him and they will get back to me today sometime. Absent the pathology report, we’re in a holding pattern. Dr Spiegel and I talked about Vanocmycin, the wonder antibiotic that has worked so well on me in the past. Problem is, it needs to be administered via IV, either in the hospital or through home health, and Dr Spiegel doesn’t think that’s necessary just yet. She did suggest adding a vanco-like oral drug to my current antibiotics, but Dr Grimes’s nurse Rhonda didn’t think that was a good idea. She said it wouldn’t add more protection and would make me feel sick. Guess we need to wait and see what we’re dealing with.
So the good news is this: I didn’t get admitted to the hospital. The lack of fluid means the infection, if it’s there, hasn’t set up shop to the extent that it had last time. It’s possible that the pseudomona is preying on my already-fragile but on-the-mend body and causing some havoc with the drain sites but not revving up the original mycobacterium. Those are all good.
I’m also healed up really well, considering what a heinous surgery it was. So healed, in fact, that Dr Spiegel couldn’t pry the suture line apart (hence the big needle). She and Nurse Sonia both seemed unusually pleased at how well I’m healing. So why do I feel so crappy?
Nancy is a changed woman! As I type this she is walking around the room brushing her teeth. Wow! What a difference a good night’s rest and a little bit of activity can do! We settled in for the night around 10 PM and she had the Norco to keep a handle on any pain. She had her “flap checks” every two hours and didn’t even need the Ambien, Ativan or the Flexeril! I think she had peace of mind just knowing they were there at the ready.
Around 6 AM, Nancy was ready to get moving, and get moving she did! She is able to get out of bed with little assistance (and that’s because the staff insists on that little bit!). She’s taken a long walk in the hospital corridors, had her breakfast and is preferring the chair over the bed. I would say she is in a chipper mood.
Dr. Spiegel showed up around 7:15 to talk to Nancy about discharge. Nancy had one main thing to keep her here and one main thing that made her want to go home. She definitely wanted to go home because that signaled the end of the compression hose wearing! On the other hand, she knows that she’s a busy body and it is much easier at the hospital to maintain a low profile, resting as needed and staying inactive. Dr. Spiegel asked what she was planning to do at home and we talked all that through. So now Nancy wants you to know, “I’m throwing these dumb hose in the trash!” Yep, homeward bound! There was even talk about these crazy contraptions that Dr. Spiegel says you wear around your chest called a “bra.” Nancy didn’t know what in the world she was talking about!
She has one more dose of IV Vancomycin (1.5 hour infusion) so that is what is keeping her from packing out just yet. She is extremely grateful for the great care that she has received at Methodist Med Center. We both agree that this is the quietest hospital room that she’s had so far–and she was even right across from the nurses’ station!
Speaking of home. Trevor and Nancy would like to respectfully request that today and tomorrow morning be a “hospital day” at home. One of her main concerns about not going home just yet was that she would be tempted to generally NOT get the rest that she would at the hospital, even with those blasted “flap checks” every two hours! That said, if you are thinking about stopping by for a visit, Nancy would like to post “visiting hours” for tomorrow afternoon, Sunday 3/6 from 2PM to 4PM. Please feel free to stop by during those times, and even if she tries to get you to stay past 4PM, please don’t listen to her! We all know she’s a social gal and would love to “take some tea on the veranda” for much longer than is good for her recovery process.
Her plan after discharge is to take it easy, rest often, and walk hunched over at least for 2 weeks. She will followup with Jennifer in Dr. Spiegel’s office next week and Dr. Spiegel feels that she will unload the majority, if not all, of her drains and wires.
Here’s to a speedy recovery for Nancy. Thanks to Nancy for allowing me to be her guest blogger and for the added privilege of being able to assist her at the hospital. It has been my great pleasure.
Her nurse is here with the Vancomycin now….
“It’s been a LOOOOONNNNNNGGGGGG day!” Those are Nancy’s words but this is Amy typing once again.
Nancy had a crazy morning….. Laura checked in; Dr. Spiegel’s resident, Dr McKnight checked in; Jennifer the PA checked in; then all three of the plastic surgery team (Dr. Spiegel, Jennifer and Dr. McKnight) popped in again. Trevor got here bearing gifts: peanut butter and toast–the only thing that has seemed appetizing and would you believe they don’t have that in the hospital cafeteria? Christie came by, too.
But wait, before she had her IV discontinued and got that “Take a Shower. Take a Hike” show on the road, she still had one last infusion of the IV antibiotic, Vancomycin. That took 2 hours so Nancy was able to sit in the chair and enjoy the smoothie that Christie brought. Mr. Morphine Pump and the rest of his crew are yet again dust in the wind. Nancy is free of anything that follows her on a pole. She does have 6 drains and 2 doppler wires, plus her central line access port, so she’s still got a little gear.
It was nearly 11 before there was serious movement to the shower. Well, all I have good to say about that shower is that Nancy is clean. One word I could use to describe how Nancy tolerated the event was that she was speechless. So, suffice it to say that the stomach pain reached out and grabbed hold of her with a lot of help from her shower assistant. It took a while but she was able to settle down from that episode (thank you, Ativan) and caught her breath. We then enticed her with a hummus sandwich from the cafeteria downstairs. She wolfed that sandwich down and then had a bit of a siesta. Thank Goodness! By that time she had recovered enough to find her voice and exclaim, “That’s not happening again! I’m clean enough!” Nancy had a little more to say about the shower, not so much the shower itself, but the way she felt manhandled by one of the helpers. Let’s just say it was rough going and it took a while for her to recover.
Nancy & I rested for some of the afternoon while Trevor took care of some work on his laptop.
Her infectious disease doctor also showed up and was happy to report that all her lab cultures have so far showed nothing…..but they will keep an eye on them for quite some time since it was such a slow growing bacterium.
So, Nancy has at this point taken 2 hikes and her one and ONLY shower and has had 2 sessions of chair time today. She is moving well, although a bit stiff and hunched over. The name Quasimodo does come to mind. She is sitting in the chair waiting on her dinner that Trevor is going downstairs to fetch. After she eats she will settle in for the night. She has commented that she can’t believe she’s napping so much, but GOOD NIGHT she hasn’t had a good night’s sleep in 3 days! She’ll end her evening with a dispensing of Norco, Ativan, Ambien and Flexeril. Not all at the same time, mind you–a staggered dispensing, but I think she’ll be able to sleep better tonight with this drug regimen and also since her “flap checks” (that’s what the hospital crew calls them) are now every 2 hours.
More updates in the morning.
Oh, the doctors will assess discharge in the morning with Nancy’s input and go from there. I think the thought is that she wants to see how she feels in the morning.