It’s my cancer-versary

One year ago today the bottom fell out of my carefully-ordered life when I was diagnosed with breast cancer.

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. 

Mastectomy day, I was up bright & early and ready to get the show on the road. Here I am at the hospital waiting to get de-cancer-fied.

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.

Macy had just posted this on her chalkboard, and for all we knew, the worst was behind us and it could only improve from there. Hahahahahahahahahahahaha.

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.

Remember Sucky, the wound vac? This photo is harder for me to look at than the one of the wound. Oh, how I hated Sucky. Necessary, yes, but hateful. And that’s all I’m going to say about that.

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.

Before the summer was over, we had the chance to puppy-sit this little beauty a couple of times. If puppy kisses can’t cure me, I don’t know what can! 

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.

This is what I looked like before The Big Dig:

and this is what I looked like 3 days later, leaving the hospital:

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.

One year ago, life took a decidedly unpleasant turn. Cancer entered my life like an afternoon storm along the Gulf Coast. 

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.

Like the pillow on my bed says, I am a survivor.


Extra! Extra!

The front page of the Houston Chronicle today has an article entitled “Infections Top Safety Issues for Hospitals.”

For hospitals?? What about for patients??

I admit, before I became a statistic and contracted a nosocomial infection, I didn’t think much about it, and I would have to say that infections were not the top safety issue for me. Now, of course, I am a statistic, and I’m not very happy about it. Well, I learned a new word (nosocomial,) which usually makes me happy, but this time, not so much. In fact, not at all. I could have happily lived the rest of my life never hearing that word, much less learning about it so intimately.

The article in today’s paper got my attention, for sure, and I half expected to read a story similar to my own, but instead it’s about systemic vascular infections among Medicare patients. The article itself didn’t enlighten me much, and it never said specifically what kind of infections we’re talking about. Not a single mention of staph or mycobacterium to be found.

Sadly, I’m quite well-versed in those two topics.

The article did say that out of 46 hospitals in a 50-mile radius of Houston, half of them reported that Medicare patients under their care contracted infections. Some 472 “hospital-acquired conditions” were reported among 234,000 Medicare patients from October 2008 to June 2010.

I love how the infections are downgraded to “conditions” in print. I can tell you with 100 percent clarity that my hospital-acquired infection was not a condition. It was hell, and it became all-out war.

the-leaky-cauldron.org

Even though I eventually emerged the victor, like most warriors, I will live in the shadow of that victory forever. I don’t know that I will ever feel completely at ease about the infection. I suspect the fear of infection will always be in the back of my mind. Like Harry Potter looking over his shoulder for “He Who Shall Not Be Named,” I will carry this monkey on my back for all of time.

It’s been a while since I have had the recurring dream in which my chest splits open and fluid is pouring out. Maybe that means I’m healing, mentally. In January I wrote about Post-Traumatic Stress Disorder, and how it’s not just for people in the military.

At that time, I was 5 months out from my last hospitalization for the post-mastectomy infection, and it was still alarmingly fresh in my mind. Today, I’m even farther out from that last hospital stay, and hope to continue putting distance between myself and that date. 8 months and counting….

I don’t freak out on a daily basis anymore, and having a reconstructed chest instead of a battle-scarred sunken stretch of mangled skin helps. A lot. To the untrained eye, I look like a normal suburbanite going about her daily business. I’m pretty much recovered from The Big Dig, other than some lingering soreness in my belly incision and the annoying fatigue that I can’t seem to shake. The reconstruction, like the cancer, was a piece of cake compared to fighting the hospital-acquired “condition.”

That “condition” and I go round and round, and even though I was the winner in our balls-out battle this past summer, it will always have a hold on me. The 256 days of oral antibiotics are case in point.

256 days.

Twice a day.

Every day.

256 days. With no end in sight.

The other day, I did something I haven’t done in all that time: I missed a dose.

This is huge for me. I’m a bit OCD when it comes to taking my meds, and I’ve been ridiculoulsy proud of the fact that after all this time, I’ve stayed on course and haven’t had to take a break, to nurse an upset stomach or to quell a GI disturbance. I’ve only barfed a couple of times, and it was because I didn’t eat enough to lay down a good base for those antibiotics.

But lately it hasn’t mattered what I eat, I always feel barfy. Once the simple carbs like crackers & pretzels failed to rid me of the ever-present nausea, I gave in and took the Zofran. The nausea was gone, but I couldn’t keep my eyes open. Clearly this would not be a daytime solution. Once I’d exhausted the simple carbs and Zofran plan, I resorted to alcohol. And lots of it. I figured, if I was gonna feel that bad, I might as well have a good buzz.

Not such a good plan.

I’m really glad I never read the 2001 study on vascular infections authored by Dr CA Mestress of Barcelona. In it he says that vascular infections are “dreadful surgical entities that are usually accompanied by a high morbidity and mortality.” Yikes. I’m really glad I didn’t know that until now. Dr Mestress goes on to say that these infections “require immediate diagnosis and aggressive treatment.”

The recent study on Medicare patients found in the Chronicle today quotes Donald McLeod, spokesperson for the US Department of Health & Human Services as saying, “We wanted to bring transparency to the fact that patients are exposed to potentially unsafe occurrences at America’s hospitals.” He goes on to say he hopes that the recent study will “spur hospitals to work with care providers to reduce or eliminate these hospital-acquired conditions from happening again to even a single patient.”

There’s that word again: condition.  That’s gonna bug me.

It seems the recent study focused on vascular infections contracted via catheters, so who knows how many other hospital-acquired “conditions” are unclassified. Instead of giving me the details I want, the article devoted itself to discussing other hospital-acquired “conditions” such as bed sores, falls, mismatched blood types, and surgical objects accidentally left in the body after surgery.

Ok, so none of those things happened to me, and for that, I am grateful. Wonder if Harry Potter can whip me up a cure for the all-day nausea?


Preach it, GB Shaw

Editor’s Note: There’s a glitch on WordPress that is hiding my hard returns, so this is one long post without the usual breaks in text to give the eye a rest. Apologies.

“The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.”—  George Bernard Shaw

Love this quote. Love GB Shaw, too. Apparently he didn’t like the “George” and refused to use it, personally or professionally. That’s why I call him GB Shaw.

googleimages.com

He’d be a dapper looking fellow if he’d have done something about that mess of facial hair. I’ve never been a fan of the facial hair, on men or women. Just not my thing.
He certainly was accomplished, though. Born into a lower-middle-class family in Dublin in 1856, he certainly could have fallen by the wayside or become a failed corn merchant but successful drunk, like his daddy. It’s said that his daddy had a raging drinking problem and a serious squint (although not related, perhaps). Here’s a useless but interesting bit of trivia: Oscar Wilde’s father, a famous surgeon, tried to fix Mr Shaw’s squint, but failed. Either he wasn’t that great of a surgeon, or it was a truly serious squint. If only my Drs S could have gotten their hands on him. No telling how fine-looking he would have become after they worked their magic.
GB Shaw is noted as a playwright, and an accomplished one at that. He also dabbled in politics and reform for the masses. His Fabian Society tried to bring socialism to Great Britain but failed. The Society did eventually become the famed London School of Economics and led to the birth of the Labour Party. Neat, huh?
More importantly, he’s also a font of inspirational quotes, like the one above. After having several comments on my recent post about how ya just gotta “keep on keeping on” when going about this “cancer journey,” it got me thinking about how easy it would be to lie in a heap and say poor me. And I guess a lot of people do that. GB Shaw would be very disappointed.
Look, nobody wants a cancer diagnosis, whether it’s in the breast or the lung, the colon or the skin. I could write for days on the myriad ways having cancer wrecks your life, whether physically, emotionally, financially, or more likely all of the above. But once that pathologist confirms the malignancy and the doctor delivers the diagnosis, rolling over isn’t an option. Giving up and giving in doesn’t get the job done.
I haven’t been tempted to give up this week, but the thought did cross my mind as I found myself mired in nausea all week long. Sometimes this happens — I’m going along just fine, taking my antibiotics twice a day every day (for 254 days, but who’s counting) like a good girl, and wham! out of nowhere is the all-day morning sickness. I’m not doing anything differently, haven’t added any weird vegetables or roots to my meat-avoiding diet. Don’t lecture me about the beets; those are a mainstay and I like it that way. Don’t care if it grosses you out to see them on my plate–look away (Macy).
By no fault of my own, I’m suddenly hit with the kind of stomach upset that makes me think long and hard about the wisdom of carrying a barf bag in my purse. My sweet infectious disease doc is immune to my perennial question of how long will this drug therapy go on, and I don’t even ask him any more. Love ya, Dr Grimes. His nurse, Rhonda, gave me a glimmer of hope on the phone when she said he might knock the abx down to once a day, but alas no deal. Instead, he gave me a prescription for Zofran and said take that and eat some crackers.
So what’s a traveler on the “cancer journey” to do? Slog away, day after day. Put one foot in front of the other. Just keep swimming (Dory). Keep on keepin’ on. Just Do It. And any other clichéd truism you can think of. You do what you gotta do to get through the day, then get up and do it again. Some people also meditate. Some people pray. Some people fret. Some probably do a combination of the three. But you gotta do something. Inertia has no place along the “cancer journey.”

Heading to Napa

The party into the night was pretty tame last night. If you ask Trevor, the tameness (not lameness, but restraint) was because of the utter lack of tequila. I’d say it’s also because of the fact that we are pacing ourselves in this long, luxurious bath in all things grape. We’ve got a lotta wine to drink, and the day is young.

We said adios to San Fran after a scrumptious breakfast at Pat’s Place, a short walk from our hotel in the brisk, sunny California morning. A crepe filled with mushrooms, avocado and cheese alongside a perfectly foam-sculpted cappuccino laid the right base for the wine-consumption that is to come.

Now, lest you think it’s all about catching a buzz and staying sloppy all weekend, let me remind you that this trip isn’t just about the cheap high. It’s a celebration. Of Yvonne’s 40 years of good living. Of good friends reconnecting, new and old. Of time away from work and home (and darling children). Of carefully-laid and at-long-last executed plans.

And of me finally getting out from under the overreaching arch of cancer and infection, to remember for more than a moment that before the #%*¥ hit the fan, I used to have a life that was full of sunshine, laugher, love, and friends.

It’s so good to be back.


Tomorrow is a big day

I’ve learned the hard way from all this stupid cancer business that every day truly is a gift, as hokey as it sounds, and that life is short, as cliched as that sounds, and that you gotta grab each day and milk it for all it’s worth (I think I just made that one up).

It’s pretty easy to get bogged down in these crazy-busy lives of ours, which by the way, are supposed to be made easier and more relaxing with all the time- and labour-saving devices we have, yet it seems that everyone is still rushed off their feet every single day. Which kinda makes it hard to unwrap the gift that is each day and to savor the little things that form a meaningful amalgamation of life as we know it. I know my to-do list is always a mile long, and some days I have to rewrite chores on the new list, since they didn’t get done on their appointed day.

My to-do list is again long today as I prepare to go out of town for the weekend.

Yes, you read that right: I’m leaving town.

Finally.

After an unfortunate series of non-starters all summer, in which no less than 3 much-anticipated trips erupted in a giant puff of post-mastectomy-infection-tinged smoke, I’m finally going on a trip. First it was the Duke girls’ trip to Tahoe. Gone. Then it was the All Star state baseball championship. Adios. And finally, the annual trek to Boston and Salisbury Beach. See ya. Missing one trip was a hard pill to swallow; missing 3 was just plain cruel. No way around the choking down of that horse pill.

But now, there’s Napa.

napavalley.com

My beacon of hope in a long, barren season of maladies. Could it be that the end to that dreadful season truly is in sight? I’m starting to believe that it is so. There is a part of me, a teensy part, that still fears a blow-up. But just a teensy part. Or a woonty part, as our friends at Salisbury Beach say. The rest of me is full-steam ahead, preparing for one fabulous weekend full of bottled poetry.

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Last time I was in Napa, I was pregnant with Payton, who will be 12 (gulp!) next month. Talk about needing a do-over. And what better reason for a do-over than a BFF’s birthday bash and a celebration of her “40 years of good living,” as the invitation states. I’m in. For celebrating my BFF, for getting a change of scenery, and for relishing this life of mine. 

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This “cancer journey” has turned out to be a bit more complicated than I thought. I’m still a destination girl rather than a journey girl, and I don’t think that’s going to change.

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But starting tomorrow, if only for the celebratory weekend, I’m going to savor every bit of the destination.

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Even if my titanium port-a-cath sets off the security alarms and I ended up getting frisked.

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Even if traffic is heavy and the plane is late.

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Even if I’m stuck sitting next to a mouth-breather on the plane (no, I’m not talking about Trevor).

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Even if the weather turns yucky.

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Even if the ever-present antibiotics have killed off some of my wine-savoring tastebuds.

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I’m going to suck up every ounce of enjoyment from a trip that has been much anticipated, meticulously planned, and a very long time in coming.

 

Our first stop in Napa is Domaine Carneros, maker of one of my favorite champagnes.

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I may just skip all the other wineries and stay right there.

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Yesterday

Yesterday was busy, and I was so occupied with celebrating the removal of the last surgical drains (HOORAY!), I didn’t fully process all that happened in the 3 doctors’ visits. Also, in the interest of full disclosure, I learned that two of the three docs read or monitor this blog, and that fact inhibits me. It takes a lot to achieve that, as I’m not easily inhibited or shut-up-able. Yikes.

So if the docs are reading today, hellooooooooo! Hope you’re having a great day filled with smiling patients, easy procedures, and ever-flowing compliments. Y’all deserve it. As I gaze down at my newly created cleavage, I’m indebted to you once again. Thank you, thank you, thank you!

Back to the long day yesterday — it began bright & early at Dr Grimes’s office, and the adventure was kick-started as soon as we walked in the door–Amy and I wondered if someone had spilled a bottle of Febreeze, as there was a serious overdose of artificial freshness in the small waiting area. An older woman who was waiting to see Dr Grimes said she couldn’t smell a thing, darned allergies, and she really hoped it wasn’t her perfume. Amy & I giggled behind our hands at the idea of someone with no sense of smell piling on the perfume, hee hee. Guess what? It was her perfume! As she left the waiting area for an exam room, the smell went with her. Egads.

Dr Grimes was full of wisdom–even more so than usual. I told him that Amy & I took the “Do I Have a Problem with Alcohol?” quiz on one of his HIV pamphlets in the exam room. According to the pamphlet, “people with HIV are prone to abuse alcohol.” They don’t have an exclusive on that propensity, believe me.

So the quiz goes like this: Amy read the questions, and I answered.

  1. Do you lose time from school/work due to drinking? No, but seeing the “due to” construction misused makes me need a drink. It’s “because of” drinking! Sheesh.
  2. Is drinking making your life unhappy? No, just the opposite. It makes my life very, very happy.
  3. Is drinking causing a change or harming your reputation? Nope, it enhances my reputation. It’s all good. But would it kill ya to say “causing a change in or harming your reputation?” Seriously, who writes these things??
  4. Do you feel guilty or have remorse after drinking? No way, I don’t even remember having had the drinks. And another beautiful thing about drinking is that it kills those kinds of feelings (which is why we do it, duh).
  5. Has your performance at school or work declined because of your drinking? On the contrary, my drinking universally enhances my performances.
  6. Do you often drink alone? Define “often.”
  7. Do you ever black out or forget what you have done while you were drinking? What was the question?
  8. Does drinking make you feel strong or overly confident? Why, yes, it does. I couldn’t write this blog without being under the influence, every single time I write. People don’t do this sober, do they?
  9. Has your drinking negatively impacted your relationship with family, friends, and/or loved ones? No, and if they really loved me, they’d get me a refill.
  10. Do you drink and are under the age of 21? Yes, and no. But I like looking at people who are under the age of 21, especially cute guys. No harm in that. And again, can we get a proofreader here? “Do you drink and are you under the age of 21″ flows so much nicer and sounds so much better. It’s not that difficult.

With the quiz completed, Dr Grimes swept into the room and gave us a passing grade on it. We told him that the only problem we have with alcohol is that we weren’t drinking bloody marys as we took the quiz and waited for the doctor. He shared a quote with us from one of his college professors, a man whose first name is Chivas: “My definition of an alcoholic is someone who drinks more than me, and who I don’t like.” Well said, Professor Scotch.

Another funny thing: Dr Grimes was in the middle of the Chivas story when I started stripping down for the physical exam. I don’t think twice about doing this because I’m so used to it at this point, but he clearly doesn’t have a lot of patients do this. I bet he doesn’t have any who were slated for 3 physical exams in the same day. He was working hard to avert his eyes while he finished his story!

The other good quote we got from Dr Grimes came in the course of our discussion of how long it takes to treat and cure infection, and how much more patient I’m being than I have been in the past (he really said that, and I didn’t prompt him — it’s true!). I used to ask him as often as possible when I’d get off the oral antibiotics. I’d even have my friend Laura, who works with him, ask him for me. But now that I’ve had a flare-up and am back on IV antibiotics, in addition to the oral abx, I’ve stopped asking. I will stay on the oral abx as long as I need to. 231 days and counting, but not impatiently.

Ok, the quote: it comes from Dr Grimes’s grandpa, who said “Anything looks fast running past trees.” That’s pretty deep. I’m going to leave the interpretation up to each individual, like a Rorschach test in which everyone comes up with a different answer. 

Let me know what your answer is.

Speaking of open interpretation, Dr Grimes gave me a copy of my pathology consultation report from the Big Dig. Fascinating stuff. I think it warrants a separate post. Don’t want anyone to get behind in their real jobs because this post stretches on too long. Plus, I need to look up a few more words and educate myself a little more. Either that, or have a drink so I can better ignore the multiple references of adipose tissue in the path report.

Thank goodness Amy was with me for the long day yesterday, both because I have proved to need adult supervision, and because I tend to miss half of what the good docs tell me. Not sure when I became such a birdbrain, but once I get in those exam rooms, I can’t seem to retain everything.

That, and I need a witness to some things like the fact that all three docs yesterday approved of my trip to Napa next week. Well, Dr Grimes’s approval was less than wholehearted; he basically said, I’m not going to tell you what to do because I know you will just go ahead and do what you want to do. I’ve learned that about you.” I think he coughed and muttered “tennis” a few times, as if we needed to dredge up the past in which there were rumors of me playing tennis before I was officially cleared to do so.

He said yes to Napa but wants to keep me on the IV abx right up until we leave, just to be sure. He thinks that whatever potential infection was stopped in its tracks before it had a chance to get ugly, hence the lack of progression. He was treating my symptoms but not seeing evidence of anything getting worse, so at this point the extra week of IV drugs is insurance. Anything that ensures me getting on that plane and heading to Wine Country is all right with me. He did tell me to try not to drink too much. Huh, yeah, right. I’ll give that a try. While in Napa. Uh huh. Gonna try real hard. Sure.

He let me go and said to come back in a month, but I had to make a return visit to the infusion room after I saw Dr Spiegel to get my next week’s supply of IV abx, and to have Nurse Shakey change the needle in my port and insert a new one. See why I need to drink, people???

On to Dr Spiegel’s office. Amy and I spent some time in the waiting area reading the pathology report,  giggling, and admiring this week’s delivery of fresh flowers. Once back in the exam room, I stripped down again, the second of three times in one day. I guess that would be weird for some people, but it’s all in a day’s work for me.

Dr Spiegel was as stunning as always, and I wish I’d asked her who cuts her hair because it’s a great cut. She continues to be pleased with the healing going on in the multitude of scars on me, and gave me the ok to ditch the flimsy post-surgical bra and buy a real bra. A real bra! Wow. Haven’t had one of those in almost a year. That’s strangely exciting. What’s not so exciting was learning that my belly may stay a bit swollen for 6 months. There was a lot of excavation done there, so it makes sense, but I’m ready for everything to be back to normal now! I need some compression on my belly to help reduce the swelling. How ironic is it that when I had a bit of a belly, I never wore a “compression garment” but now that my belly has been relocated north, I need a girdle. Fine, whatever, I’d wear a suit of armor at this point if it meant getting rid of the drains. Hooray and hallelujah that the drains are gone. What’s really amazing is that the holes that held the drain tubing are already closed. Not healed completely, and still really bruised, but not open and not seeping any fluid. Yes, it’s another gross photo but this one actually represents something to be celebrated. As in, I’m celebrating the absence of any rubber tubing. And instead of cringing, you should be celebrating that you don’t have any either. And while you’re at it, cross your fingers for continued healing and no drama. And be glad you’re not wearing a “compression garment.” Not that I’m complaining. Just saying be glad it’s not you.

My visit with Dr Spiegel concluded with her blessing to go to Napa, have a great time, just don’t go swimming since the incisions and drain holes aren’t completely healed. Trust me, the last thing I’m going to do is anything to jeopardize the fragile peace that I’ve made with this complicated wreck of a body.

From there, we zipped back to Dr Grimes’s office to take care of the port maintenance and pick up the latest box of goodies, then headed out of the med center and down University, past the beautiful Rice University campus, to Second Silhouette, the nearest medical supply company to get my new bra. Yea, how exciting — getting a bra at a supply store. No boutique or Victoria’s Secret for me. No sir, I got to shop at a store that also sells prosthetics and diabetic socks. Yea.

That’s all right, I was shopping without any drains, so it was all good. We were in and out of there quickly, since we were starving, needed to raise a glass to the drain-free status, and still get to Dr S for the third and final appointment of the day.

After some libation and a quick but yummy lunch, it was onward for the highlight of our week: seeing Dr S. His new office is configured so that he has a little desk visible from the check-in window, which has no glass (love that). He was sitting at the little desk, waiting impatiently for his favorite patient and her trusty escort, who he likes the most! I think he glanced at the clock to remind us that we were late, and I’m sure he didn’t want to hear that the reason we were late involved adult beverages. We said howdy, checked in, then fled to the hallway. He wanted to know where we were going, so I told him: to go smoke a butt. No, really, just needed a pit stop.

After that, we got right into an exam room and I once again eschewed the paper gown.

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Save that for a “normal” patient who isn’t used to stripping down multiple times a day. I’ve saved a lot of trees from my frequent doctor visits. Always looking on the bright side. And I’d much rather hug a tree than a person. Can’t help it, I’m just not very touchy-feely. I just hope that this new habit of mine isn’t permanent; don’t think I need to strip down for the allergist or the podiatrist.

Dr S joined the chorus of “yeses” saying go to Napa, girl, you’ve earned it. ‘Bout time you got out of town. I remembered to get a letter from him to present to TSA saying I have metal in my body (the port) so I may set off the metal detectors. If they are suspicious, I can always strip down and prove it. Amy showed our shared gratitude by washing his glasses, which we could tell were smudged when he gestured and pointed with them. That’s full service. Always happy to help make Dr S’s life better, easier, more joyful. When he mentioned my little blog, he suggested I say some nice things about him instead of always busting his chops. I may have to start a whole ‘nother blog just for him, and to contain all the words of praise and appreciation I have for him. I forgot to tell him that guest blogger Kayte VanScoy described him as “fit and attractive” and likened him to a combination of Justin Timberlake, Arnold Schwarzenegger, and Karl Lagerfeld. What a mash-up!

We had some serious talk about Little League baseball and his 6-year-old’s stellar season so far. He knows I’m a big baseball fan, and we bonded over baseball about this time last year. He helps out with his son’s team and Amy and I both think that’s awesome. He has a seriously busy schedule and a very important job (well, the work he does for cancer patients, anyway; the more cosmetic stuff not as much), yet he’s proven time and again that his family is his priority. I’m sure the coach appreciates the frequent input that Dr S gives him, and he’s been known to make suggestions on the line-up.

After we solved the problems of the Little League team, our business was done. At least for that visit.


Some days…

Some days I want to open up my skull, scoop out my brain, cradle it lovingly & pat it reassuringly and tell it there, there, one day this bad stuff will be behind us and everything will get back to normal. Those who’ve walked this “cancer journey” before tell me that this will happen. Other days, I want to open up my skull, scoop out my brain, and kick it across the room, saying, is this the best you can do? Can you at least try and keep up here? 

Today is a kick-it-across-the-room kind of day, and it’s early. It’s still dark outside, for cryin’ out loud. My brain should still be sleeping and recharging so it’s ready to face the day. Instead, it woke up–and woke me up, too–several times last night, disrupting my Ambien-induced slumber. Stupid brain. Doesn’t it know that sleep is the one guaranteed relief from the cancer-laden thoughts that course through my head? Unless I’m dreaming about cancer-related stuff, that is, and that too I blame on my idiot brain. How come those dreams are never good? Where are the unicorns and fields of four-leaf clovers? Where are the feel-good scenes that bathe my brain in serotonin, ensuring that when we wake up, we do so with a big smile and feel like we’ve had a nice hug. Where’s Charles Schultz when I need him? 

Now I can’t remember what this post was about. Stupid brain.

Today will be a long day. In addition to the choppy slumber and frustrating half-thoughts, I have 3, count ’em, 3 doctor’s appointments today. That’s about 3 too many for me.

First up is Dr Grimes, infectious disease guru, to hopefully shed some light on the MRSA part of the infection puzzle. I’m expecting to get culture results from my visit to him last week, and he will order blood work as well today, to seek more answers to the great infection questions that seem unending.

Then it’s off to Dr Spiegel to get down on my knees and beg her to please please please pull these damn drains. Today is 4 weeks, people. Four long weeks of being tethered. She’s not easily swayed, so my visit to her may end in tears. Or shouting. Or both.

But, wait — I have my appointment with Dr S to round out the day! That ought to be good. He always has something interesting to say about my pitiful situation. Half the time I don’t have the foggiest idea what he’s talking about, but it’s always interesting.

Stay tuned.


Instead of bitchin’ & moanin’

My first instinct when I sat down at the computer today was to bitch & moan about the fact that I’m rapidly approaching one month post-reconstruction and I still have the 2 JP drains, one on each hip.

Have I mentioned how much I detest and despise these drains? While I understand their importance, and I’m a big supporter of fluid being outside instead of inside my battered body, I detest and despise the drains.

Because of the latest flare-up, i.e., the MRSA infection, the drains will stay for the foreseeable future. It’s a vicious cycle: I probably got the infection from the drains, but the drains have to stay until the infection clears. As long as I’m on IV antibiotics, I need the drains, and as long as I have the drains, I need the IV abx. Twisted, huh?

I’m starting week 2 of House Arrest, and this week isn’t any easier than last. The idea is that if I lay low and do next to nothing, the fluid levels will decrease and I can get the drains removed. But now with the MRSA, the drains need to stay, because if there is infected fluid, it’s gotta come out. Nothing makes me more nervous than infected fluid sitting around making mischief on my insides. I had a crazy idea this weekend: since the drains are staying anyway, why not get some things done around the house? Well, because increased activity means increased fluid levels, and then I’ll be stuck with the drains even longer, that’s why.

Instead of bitching &  moaning ad nauseum about drains and House Arrest, I need to find another topic. My quick run-down of all the positive things about this situation left me uninspired. The usual suspects in my list of “bright sides” seems stale and failed to provide me with the literary verve I need.

But then I remembered my port-a-cath. Yes, the port! That’s a bright spot on this barren landscape of bad news topped by rotten luck. And what a story, too: I thought I needed it for chemo, then I didn’t need it for chemo, and had some trouble with it once I got it, but then ended up needing it for so much more! And voila, the topic du jour.

I used to hate my port. I hated that I had to have it in my life at all. I hated that getting it meant yet another surgery and all the hospital stuff that I detest. At first, it was red and angry and painful, and looked just plain awful. At the risk of sounding like a xenophobe, my body clearly doesn’t like foreign things. First the tissue expander got infected, then the skin around the port got hot and red and big-time uncomfortable. The port made it clear from Day One, on June 25th, that this was not going to be an easy co-existence. The port caused me to spend a Saturday in the ER (Good golly, have I not spent enough time in the hospital already?). Thank goodness there was a “Deadliest Catch” marathon on TV that day, or I would have been fit to be tied.

Questions keep coming in about the port, and after I mentioned it in yesterday’s post, I guess I incited the curiosity again. Here’s Wikipedia’s definition of a port: a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.

I agree with all of that, except for the period being outside of the quotation marks around needle stick at the end of the sentence. The period should be inside the quote marks. Other than that, it’s all good.

While there are lots of different ports, I got the Power Port. I didn’t express a choice, didn’t think about it, but trusted Dr Dempsey to choose the right one for me. I was still healing from that damned infection that showed up after the mastectomy, and wasn’t thinking about which port was best for me. I got the port because the most respected oncologist in my area said I needed chemo, then a another highly-recommended oncologist seconded that opinion, so I was going to do chemo. Long story short, my lymph nodes were clear and my margins were good, but I had micrometasteses, which essentially are cancer cells that are floating freely and not organizing into tumors. Some oncologists consider micromets to be node positive, meaning the lymph nodes are affected, and some oncologists consider them node negative, meaning they have not traveled to the lymph nodes. Some crazy patients, especially those who watched their sweet, irreplaceable mama die from cancer, think the micromets may not be organized, but need to be blasted with chemo anyway.

Yes, that was me.

Statistically, my case was contraindicated with chemo, but I’ve never been a numbers person, and I admit that my initial pro-chemo decision was based on emotion, not statistics or science. I was still reeling from losing my mom, and sure didn’t want my kids to have to suffer that terrible fate. Who am I kidding saying “I was still reeling” — I      AM still reeling and probably will be for the rest of my life. Stupid cancer.

So I reacted emotionally and, driven by fear, decided to do chemo. I had done my due diligence by consulting two vastly different oncologists (one old and established who is super conservative; the other younger than me and quite current on the latest & greatest research, and also highly recommended by a friend in health care. Both doctors based their pro-chemo recommendation on the fact that I was 40 years old and healthy, and able to handle the chemo. Or so we thought.). I wasn’t thrilled with starting chemo — who is? — but was prepared.

Then the mycobacterium entered my life, and 11 months later, is still a huge part of it. The only good thing I can say about the myco is that being sick, sick, sick in the hospital with a post-surgical infection disqualified me for chemo. I was too sick to start it, and my body certainly wouldn’t have withstood it well. In the meantime, we crunched the numbers again, consulted a third oncologist, and I came down off my emotional decision-making high horse and saw that the numbers really didn’t bear it out. Chemo for me would result in a very marginal increase in survival rate.  If the fortunes had not granted me that one small favor, and I had needed chemo but was too sick from the mycobacterium to start it, I would have been a basket case. Much more of a basket case than I already was, that is.

Talk about a blessing in disguise. While I was reeling from and healing from the infection, Dr Dempsey suggested I consult a third oncologist, because maybe chemo wasn’t what I needed. She never thought so, neither did Trevor, and neither did oncologist #3. My cancer happened to be slow & lazy, which is the best kind of cancer to have. Except for the nonexistent kind, that is. So no chemo, just Tamoxifen for 5 years. But I’d already gotten the port.

Nobody ever accused me of sitting on my hands.

The Power Port comes with a handy, dandy patient pack. When I got home from the procedure to insert the port under my skin and into the vein, I laughed at the handy, dandy patient pack. It seemed so stupid, and to me typified the excess and waste that’s prevalent in the pharmaceutic and medical-device business.

There was a pamphlet full of meaningless prose written to allay any fears I might have about the port (like the fact that it’s sewn into the jugular vein. Hello???) and make me feel warm & fuzzy about the little device. It also included a jelly-type bracelet that I guess they expect port people to wear, along with an ID badge with the serial number of my particular device. Why I would ever need this I couldn’t fathom, so I pitched it all. If you were hoping I’d give you the snazzy jelly bracelet, too bad. You missed out.

My favorite part was the list of bragging points:

“Lightweight for patient comfort.” “Reduced artifact.” “Easily identifiable.” “Power injectable.” “Titanium port body.”

Oooooh, fancy.

Despite the goofy marketing, I have to admit that having a port is highly advantageous if you have wimpy veins. And I do have wimpy veins. At first blush, they seem perfectly competent and cooperative, but once the needle pierces the skin, they flop around like fish out of water, making it hard to pin them down (no pun intended).

After multiple hospitalizations for the blasted infection, though, that port came in handy. And it was crucial during the courses of IV antibiotics I have had at home. And it was supposed to be quite handy in my reconstruction, because the anesthesia, antibiotics, and pain killers (lots and lots of pain killers) can flow through the port instead of an IV in the crook of my arm. However, the port was in the way during the Big Dig, and so the Drs S decided not to use it during surgery, even though it had been accessed, and they put an IV in anyway. At least I was asleep for that.

I don’t hate the port anymore.

It still kinda creeps me out, but I don’t hate it. I shiver a little when I think about the fact that it’s sewn into a vein, and not just any vein but the jugular vein. That’s super creepy. I don’t like that the 3 little nubs on the port’s septum are visible through my skin, and if I turn a certain way, the nubs really protrude. I guess that makes it easy for the nurses who access the port, but it looks weird and reminds me that it’s sewn into the jugular. Sometimes it gets crunched when I’m sleeping on my left side, but I’m still not allowed to sleep on my side since the reconstruction, so never mind.

Several people have asked me why I still have the port and when I’m going to get it out. The answer is not until the infection is gone for good. And no, I don’t know how long it will take. Almost a year into it, I still don’t know. I stopped asking, and you should too.

The main downside to keeping the port is that when it’s not being used, there’s some maintenance required. No big deal, just a trip to see the oncology nurses every 6 weeks. Every visit reminds me how fortunate I am, and that my cancer business could have been even more serious. The infection is plenty serious, but at least the cancer side of things was pretty straightforward.

So the port maintenance goes something like this: the nurse puts a sterile drape around the port site and tells me not to look down or breathe on it. She scrubs the top of the skin on top of the port real well with iodine. It’s cold, and the sensation of the iodine-dipped wand passing repeatedly over the port is disconcerting. The smell of the iodine is gross and reminds me of post-infection wound care, without a single happy memory to be found.

After rigorous cleaning, the nurse jabs a short but very thick butterfly needle through the port’s septum, using the three raised nubs to guide her. Every time I’ve had it done, which had been lots, the nurse has essentially told me to brace myself for a really big stick. They do not exaggerate. The Power Port website says, “For most patients, there is only a  mild pricking sensation felt during needle insertion. Frequently, the sensation of the needle insertion decreases over time.”

Lies. All lies.

Sorry if the photo sicks you out, but if I have to endure the “mild pricking sensation,” surely you can manage to peep at the picture.

Once the super-thick needle is in, the nurse attaches it to a thin tube that she can then attach a syringe to and inject whatever needs to be injected: chemo drugs, antibiotic, pain killers (yes, bring on the pain killers!) some contrast dye for certain scans, or in the case of port maintenance, saline and heparin.

After I’d had this process done several times, one of the chemo nurses asked me if I had used the numbing cream before that day’s appointment. Numbing cream?? What numbing cream? No one had ever mentioned that before.

Well guess what–there’s a numbing cream. Lidocaine and Lanocaine and some other caine all whipped up in a prescription cream that will make the port maintenance so much more pleasant. Yes, please. It does help (when I remember to apply it before my maintenance appointments), and Macy and her friend Ella both used it on their earlobes when they got their ears pierced.

So every 6 weeks I get the port flushed–sometimes with and sometimes without the numbing cream. No big whoop, although one day it bled quite a bit after the needle came out, and made a bloody spot on my most favorite white hoody that remains even after multiple bleachings. Perhaps it’s a symbol of what I’ve been through, and of how much I can endure. It’s a reminder not to whitewash the bad stuff, to leave a hint of the gore around to bear witness to the hard times and rough road that one must travel, sometimes precariously, sometimes fast and sometimes slowly, to get to the other side.


When you suspect MRSA…

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.

Moving on.

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.

My supplies look like this:

Flashback to this past summer, when I had the first round of IV antibiotics at home. The supplies looked like this:

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.

Here’s the “bag” of Cubicin as it starts infusing. It’s chubby and round with a rod down the middle that helps indicate when the drug is all gone.

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.


The hits keep coming…

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.

Screeeeeeeeeeeeeeeeeeeech.

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.