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.
According to the latest hospital bill, that’s how much my reconstruction cost. Well, at least phase 1 of reconstruction. More phases to come, but let’s not even think about that now; I would hate to stroke out this close to happy hour on the last Friday of spring break.
Here’s the breakdown, in case you’re curious; please note the absence of any fees for the surgeons. I can’t even begin to imagine how massive those costs are, so let’s say for now that the Drs S did an amazing job and I couldn’t put a price on their services if I tried.
ICU Surgical: $9,312.00
Radiology (don’t recall any of that; must have been asleep): $359.00
Medical Surgical Supplies (nice & vague, huh?): $18,117.00
OR Services: $22,550.50
Intermediate Care: $2,586.00
Respiratory Services: $147.50
Pathology Lab: $3,607.00
And finally, the most puzzling charge of all:
Patient Convenience: $5.50
WTH?? If anyone knows what “patient convenience” is, and why it costs $5.50, please do tell. I can assure you there were precious few things about that procedure that were actually convenient.
I would have expected my pharmacy fee to be much higher. Maybe as a repeat customer, I get a discount on morphine.
I was out cold in the OR, having unspeakably nasty things done to my body to restore the damage wreaked by the post-mastectomy infection. Whew!
The first couple of days of week 1 are pretty hazy, thanks to my BFF morphine. Love that stuff. But my BFF knows its proper place, and we have short but infrequent get-togethers. This time around, my BFF gave me a terrible headache, which was quite rude, so I bid adieu to the pain pump as fast as I could.
Let’s start from the beginning. Or as much of it as I can remember. Readers, feel free to chime in when you notice I’ve left something out. We got to the Medical Center on time (6 a.m.) and I got right into my pre-surgery room. My beautiful gown and compression stockings were waiting for me, but I waited until the very last minute to don them. After some precursory steps, like accessing my port for the administration of the really gooood drugs, a gaggle of white coats entered the room.
Dr Spiegel led the way, with her PA Jenn next, followed by their resident, Dr McNight, then my favorite plastic surgeon. He was the only guy in the room. Yahoo, girl power! He had a cool wooden box in his hand and when I asked if it was a present for me he gave me one of his looks. Someday he’ll appreciate my humor. Inside the box was not a present, but his loupes, which sadly he didn’t offer to model. I’d love to see him in a pair of goofy glasses.
Dr Spiegel and Jenn started marking my belly and I’m so mad I didn’t think to take a photo because it was cool. They used a blue sharpie for arteries, a red sharpie for blood vessels, and a black sharpie for incision lines. Lots of arrows and lines later, there was a roadmap of sorts. Very cool. At one point, Dr Spiegel wasn’t happy with an incision mark so she had Dr McNight scrub it off my belly with alcohol and re-do it with the black marker.
After that it was time to head to the OR, and they must have given me a cocktail in the pre-surgery room, because I don’t recall anything after the sharpie party. When I woke up, some 8 hours later, I felt pretty good…but it was because I was wrapped in the loving embrace of some big-time anesthesia. Dr Ashmore, my hand-picked anesthesiologist, did a fantastic job of putting me to sleep, and more importantly, waking me back up. It was good and restful.
I’m not too sure about whether I was in a recovery room or went straight to the ICU, but once I got to ICU I recall that it was HOT. And I’m a Texas girl, so I know about some heat. The docs had warned me that the room would be warm, to help my newly transplanted blood vessels learn to regulate themselves in their new northern home. But wow, was it hot. Between the high temp, the two heaters, and the squeezing of the compression hose, I was roasting. I tried to be nice about it, and I think I only lost it once, when I begged one of the ICU nurses, probably Carol, to please please please just crack the door and let some AC in. Just for a second. She declined my request.
I spent the night in ICU, but thankfully the flaps, aka former belly skin & fat that were magically transformed into breasts, behaved and there was no drama (other than me begging Carol to crack the door, turn down one heater, turn up the thermostat or bring me a gallon-sized frozen margarita). The flaps had to be checked every hour, yes every hour, with a hand-held doppler. There were (until yesterday) some wires stitched on top of my chest that somehow transmitted audible sound of the blood rushing through my newly transplanted blood vessels through the doppler. It sounded a lot like a fetal heart monitor. And we heard it a lot. My flaps were cooperative, and the nurses were able to hear the blood rushing almost instantly after putting the doppler onto my chest. One nurse told me that sometimes it took 20 minutes to find the sound. I started to panic after a few seconds of not hearing it, so can’t imagine the size margarita I would need if it took 20 minutes to register.
The ICU room had a wall of windows with mini blinds, and the nurse was right outside the door at a desk looking into my room if not attending to her one other patient. Some people might think that would make you feel very safe and catered to, but it made it hard to sneak anything by her because she was always watching. If she wasn’t watching, somebody else was walking by. It was a constant parade of doctors, residents, nurses, PCAs and other people peeping into my room.
I got released from ICU after some really delicious jello and a contraband peanut butter & jelly sandwich (liquid diet…pffft) into a regular room on the 8th floor of Dunn Tower. Lovely view out the window of the heart of the Texas Medical Center, and more importantly, no heaters. It wasn’t exactly chilly in the new room, but so much better than the ICU room. Nevertheless, I did beg to have the tight, scratchy, hot compression stockings removed. Those nurses were not swayed by my shameless begging.
Apparently the docs were pretty pleased with their handiwork, and if you missed Trevor’s and Amy’s guest blogs while I was too loopy to post, go back and take a peek. Long story short, the flaps were cooperating, the morphine headache abated, some regular food arrived, and life rolled on. At some point they moved the flap checks to every two hours instead of hourly, which was mighty nice. It’s amazing how your perspective changes in a situation like that. After umpteen hours with no food, a simple PB&J was a delicacy. After being awake most of the night, a short cat-nap seemed a decadent luxury.
I’m sure I said some goofy stuff and probably offended someone at some point with my off-color humor. Apparently I channeled my mom, too, telling my friend Laura who works at Methodist and who visited me several times a day, “Thanks for dropping by.” Every time she came by. I was just being mannerly and didn’t realize I’d seen her a few hours previous.
There are conflicting reports on how the turf war between the Drs S played out. All parties are being quite cagey on the details of who did what part of the surgery, and like a good murder mystery, we may never know who real killer was. I have my suspicion, but even asking point-blank hasn’t garnered an answer, so we may have to label that information “permanently classified.”
I did get to skate out of the hospital a few days ahead of schedule, and even though I received impeccable care, I couldn’t wait to get out of there. Coming home is always sweet, but never as sweet as when I’m leaving a hospital room.
I have more mobility than I did after the mastectomy, but not as much as I’d like. The first few times I had to get up without using my arms but relying on my legs and abs, the hip-to-hip incision on my tummy protested mightily. But it got better every time, and now I do it almost without thinking about it. Almost. I still can’t walk completely upright because the incision is still very tight, but I’m not quite the Quasimodo I was in the hospital. I get a bit straighter every day.
I came home with 6 JP drains this time, and had to upgrade my VB sling bag to a bigger VB bag that could accommodate the drain party. I knew from last time around that 4 drains fit nicely, with a little extra room for my Blistex, some folding money, and a teeny ziplock bag of pills, should they be necessary. Six drains would have burst my handy little bag right open. Wonder how many drains this lady is toting in her VB bags?
I had my first real shower today, not counting the seated variety the hospital offers. Again, it’s the little things we take for granted. I’m down to just 2 drains and back to my sling bag, thanks to Jenn removing the 4 drains up top yesterday. She gave me a good report; everything looks good and is healing nicely.
While I feel a whole lot better and am ready to get back to normal, my handlers think one week post-op is a bit premature to jump right back into the day-in, day-out routine. I am trying to take it easy. I’m resigned to the fact that I’m back to one outing a day for a while, and sadly, a doctor’s appointment counts as an outing. Yesterday I had a small entourage escort me to see Jenn, and we had a bite of lunch (sans margaritas) beforehand. The handlers insisted on snapping a photo of this maiden voyage, and there was some talk of me earning a margarita for every device I had removed at the subsequent appointment. Between the two doppler wires and the 4 JP drains, somebody owes me 6 margaritas. No salt.
Although I complain about going to the med center, there’s always something interesting to see along the way. Getting out of the suburbs is a good thing, and there’s a whole ‘nother way of life in this big city of ours. Last time I was at the med center for some testing, I saw this car and had to take a picture, to show Macy. I knew this car would appeal to her:
and had to snap a picture. Yes, it is a zebra car, complete with a long tail. Gotta love the big city.
“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.
Nancy had a restful night–as restful as being woken every hour can be. A shout-out to her nurse, Amira, who was extremely capable and attentive. Nancy did snooze very soundly when she was able. The combination of Norco and more Norco seemed to diminish her headache, although it’s not completely gone. The pain is still there and is being managed by the Norco also. This morning a bit of muscle tightness and tenderness in the stomach area reared its ugly head and has taken the forefront in the battle for attention. While Nancy hasn’t actually called it pain, I think that may be the best word for it, and she did say it was a new sensation that came up today. I bet the other stuff has diminished enough that this now gets to grab her attention. She has bruising around the hip to hip “free tummy tuck” incision and Jennifer, Dr. Spiegel’s PA, says that they did have to work hard with her muscle layer there as well as on her chest wall so this is to be expected. She has been given Flexeril (a muscle relaxer) to help with this and the added benefit is that it makes you VEEEERRRYYY sleepy. So, even though at 5:15 AM, Nancy was confident that she was up for the day and we did the teeth brushing and face washing that comes with a new day, she was within minutes back to sawing logs. Good Girl! She has been dreaming out loud and woke asking me, “Is that due tomorrow?” You can take the Mom out of the home but you can’t take the Home out of the Mom!
The fever is no longer an issue. Nancy did a great job with her breathing exercises and coughing so those nurses must have been right about the phlegm.
Today is a going to be a busy day. It started with a flurry of people in and out at shift change. Dr. Spiegel specifically trains the nursing staff that takes care of her patients so there is only a handful of nurses who are qualified to be Nancy’s caregivers. Her new nurse is Karina. There are promises of getting rid of her IV and a few other constant companions since she’s had the surgery. Once that is done, she will get a shower and be expected to walk the halls at least 3 times today. Nancy is looking forward to that since the compression stockings can be taken off during this time.
Mr. Morphine Pump has become just an extra appendage. Nancy last summoned his prowess on yesterday’s second and final “sitting trial.” She’s planning to shed him when she sheds the other hangers on.
It’s going to be a good day. The staff is quite certain that the shower and ambulation will bring strong feelings of rejuvenation. It has been mentioned twice already that she may be ready to be discharged tomorrow. We’ll see how she feels later today and as Laura mentioned when she popped in for a quick Hi this morning, “Knowing Nancy, it might be better for her to stay until Sunday, just to keep her from doing too much.” Yep, Laura, you are probably right about that!
We’ll keep you posted.
Hi, It’s Amy again….
Nancy is utterly exhausted. The nurse for the start of our night, Le, said that is the worst part of this particular surgery for Dr. Speigel’s patients. The arterial blood flow HAS to be checked every hour….EVERY hour. Nancy is tired….tired.
Now there is a tiny bit of a fever coming on…..the nurses aren’t too concerned but listened to her chest and said she has some phlegm in her lungs….not that big of a deal but after such a major surgery and after so much inactivity, it could progress to more of a concern. Nancy has been tasked (see Daily Goal #3) with doing cough and deep breath exercises 10x per hour. Now this is important because it keeps her lungs expanded and allows better air flow. So now, instead of resting through the night and just having arterial checks to the new girls, she is also going to have to continue the breathing exercises every hour and not just when she’s awake. She’s a trooper, though, and we worked through the first session after having the “you need to pay attention to this” talk and she was able to meet and then exceed the milliliters of airflow per deep inhalation….probably the last 6 of the ten times, and do her coughs, too. She is working on this and knows it has to be done and is not complaining.
NOW….what she IS complaining about are 2 things. And, mind you, she is not really complaining too much. I’ve only had to charge her the $10 for “having to put up with your complaints fee” twice today. As much as Nancy would like you to think she’s a troublesome patient, she is not, at all. In fact, the staff enjoy her very much. Her easy going nature was complimented today when she had to make the effort to get in the chair to sit for another hour. Le, her nurse commented about how Nancy’s attitude really made her job easier.
Complaint number 1: This particular complaint is what brought on the $10 charge twice today. The ICU room was hot, very hot. In fact there were heaters brought in just for this purpose…two of them. Seems that the stomach tissue that they harvested for her new breasticles doesn’t realize that it has to get it’s heat source from her body instead of the outside air now so for the next few weeks Nancy needs to have a warmer than normal outside air temperature. I think Dr. Spiegel even mentioned not running the AC at her house but Nancy and I decided to let that one go over our heads. The hot temp in the room coupled with Nancy’s hot flashes brought on by her medically induced but necessary menopause do not make a good combination. She actually assessed herself the charge after I mentioned that I charge $10 at my house for being “grouchy, irritable, or just plain mean.” Then she said, “And you can charge me another $10 for this one…..” as she launched into her next complaint about the heat. We got icepacks for her neck and her legs and put cold washcloths on her feet. Plus we got her the med that prevents hot flashes that had been overlooked on her orders…
Complaint number 2: Headache. A bad one. She’s been dealing with this all day. The nurses say she had a pretty major dose of morphine in the ICU so that is a side effect of morphine and it should work itself out as she uses less and less morphine. Because of this, Nancy has decided that Mr. Morphine Pump may not be summoned for his duties at every thought of her becking and calling for him. She’s thinking about it before she presses the button. On one side there’s the headaches. On the other side there’s the pain. It’s a delicate seesaw to manage but she seems to have hit on a solution. Norco. That’s Tylenol laced with Codeine (or is it Codeine laced with Tylenol?). She tried just plain Tylenol, but it didn’t help. But the Norco seems to have hit the spot. Instead of alternating Tylenol and Norco as was originally planned for this night, she will be alternating Norco and more Norco, every 4 hours. Yay Norco!
She is resting comfortably now for the 55 minute catnap between arterial checks and breathing exercises. I just put her sleeping mask on her to aid in not fully waking her for the checks/exercises. She hasn’t called for the Ambien yet but it’s a matter of time.
Besides finding the Norco solution, the next bit of good news is that she managed to move from her bed to the recliner, sat for an hour, then ambulated back to the bed with only 1 morphine pump at the beginning of the whole scenario. The nurses are impressed with how tough our girl is! She really is doing remarkably well. Another upside is that she doesn’t seem to be plagued by the nausea that chased her after her mastectomy and subsequent infection surgery.
Just so everyone knows, Nancy’s phone is with her but on silent and on the bedside table. When she wakes up, we give it to her and she sees your texts, emails and Facebook posts. Trevor & I have been reading the blog and Facebook comments to her and they just make her smile. She is so appreciative of everyone’s support. It means the world to her. She is so exhausted that she just hasn’t been able to focus on responding, plus the drugs and the headache have her where she can’t really focus but just know that you are important to her and she is thankful.
On one last note. Dr. S. called to check on her. He called the room and I answered. “Who is this?” he asked. “Amy” I replied. “Oh, Hi Amy, How’s Nancy?” Dr. S. was glad to know she’s doing so well. We talked about how good the results look and how healthy the skin looks and what great blood flow it all appears to have and how the doppler ultrasound (the hourly check) sounds so strong. I asked Nancy if she wanted to talk to him and she silently shrugged. He must have heard the shrug because he asked incredulously, “Oh, she doesn’t want to talk to me??” so she talked to him for a moment. She complimented him on the symmetry of her new rack and said she figured he must have done the shaping, and she reiterated how happy she is with the results.
As we prepare to bid adieu to 2010, I took a stroll down memory lane in the months since I joined the club of which no one wants to be a member. There were some great moments in the first few months of 2010, or BC (before cancer), and I made it my mission to ensure that the months that followed had the same. Two weeks before I was diagnosed, life was grand, as evidenced by the happy girls in this photo of Yvonne’s birthday dinner at Stella Soli. So fun! Who knew that something wicked this way comes?
The day before my surgery, Macy and I had the great good fortune to meet Jeffrey, a baby mockingbird rescued and rehabilitated by our friends the Hoovers. I’m sure I had a million things to do to get ready for the big day, but meeting Jeffrey was high on the list, and I wasn’t going to miss out on the chance to have this sweet little guy hang out with my favorite girl.
An awful lot of people did a whole lot of nice things for my family and me, following my surgery, including but certainly not limited to custom-made cupcakes,
One of my first post-surgery outings was around the corner to dinner at the Cremers’ for Keith’s famous crab towers: lump crabmeat topped with a most delectable avocado-mango salsa atop a bed of greens with a citrus-y vinaigrette.
Y’all know how much I love my bubbly.
Some may say I love it more than my kids, but that’s not fair.
We all know it would be a tie.
Two weeks after the surgery, but before the dreaded infection showed up, it was my birthday. Those who say it’s all downhill after 40 may not realize that to a cancer patient, each and every birthday is a gift, and I met birthday number 41 head-on with a welcome embrace: Mexican food, margaritas and the cutest cake ever with my girls. None better. Who cares that I still couldn’t wash my own hair at this point? Not me! I was happy to be upright and out of the house.
A week after my birthday, the bottom fell out of the extraordinary recovery I was experiencing post-surgery. We were at a joint birthday party for 3 June girls (but there were no joints at the party; that’s how rumors get started!), and I didn’t feel good. After two weeks of slowly but surely making progress and feeling better, this was weird. What was really weird was waking up the next day to a huge red rash and blisters at the surgery site on my right side. You don’t have to be a doctor to know that is not good.
and embarked on one of the most memorable summers ever, for baseball. Memorable because the team did so well (District champs, Sectional champs and on to the State championship in Tyler) and because the boys chose to show their support for me very publicly by wearing pink sweatbands all summer. These warriors in pink tore it up on the baseball field and made this mama so proud.
I only made it to a couple of games but got to follow along with all the action thanks to an iPhone app that allowed Trevor to “broadcast” the games to a website that I followed on my iPad from the hospital. I will never forget the look on the nurse’s face when she came into give me a shot of morphine and I told her I needed to wait (I never turn down the good drugs) because I wanted to keep my wits about me and follow the game. Also memorable was the wound-care specialist who had two sons go to State as All Stars who called me from home at 10:30 pm to see if Payton’s team won. They did.
In between hospitalizations, I spent a couple of hours one day in my backyard in the sunshine, watching Harry frolic in the pool. After being cooped up in a dreary hospital room and feeling lousy, the fresh air, sunshine and unbridled canine joy were just what I needed.
One of the best days of all was in early July, in between hospital visits. I had been to see Dr Darcourt, my third oncologist, and learned that he agreed with all the research Trevor had done: no chemo! Celebration was in order, and when Amy & I ordered champagne at lunch, our sweet waiter at PF Chang’s asked if there was something special to celebrate. He had no idea but we filled him in!
Another highlight was getting to spend the weekend in Galveston with Christy & Alexis, who were kind enough to teach Macy how to fish. And fish she did: that girl caught the biggest fish of the trip! Later that night, I caught a baby sting ray (not my intent, for sure). I still feel bad about that poor little guy happening by the tempting lure on my fishing pole. All’s well that ends well, though, and with some help from some more seasoned fishermen, the little guy was freed. More importantly, I had a fun weekend with great friends that approximated a return to what most people consider a normal life.
Despite the idyllic setting, that weekend was just an approximation, though, of normal life, and the infection would puzzle and vex not one but two set of infectious disease doctors. After two more hospitalizations and a new team of ID docs, we got a handle on it, and although the last thing I wanted was to go back to the hospital, and to the Medical Center at 10:30 on a Sunday night no less, I wasn’t alone in the joint.
Macy loaned me her beloved Froggy to keep me company, and he took his job seriously. He didn’t left my side until I was allowed to go home, and then he went straight from the suitcase into the washing machine lest he brought home any nasty germs from the hospital. We’d had quite enough of those in our life.
Early August was bittersweet: I was on the mend, literally, but still on IV antibiotics at home and not well enough to travel to Boston for our annual vacation. After already having missed my Duke girls’ trip to Lake Tahoe in early June and all of the State championship in Tyler, I was beyond sad to miss this trip, which is always the highlight of our summers. Leave it to Macy, though, to bring me a fantastic souvenir: Continental Airlines had unveiled a new drinks menu on her flight home from Boston, and she got me a pomegranate martini mix and, once home, brought two glassed full of ice, two lime wedges, and one shot of vodka. My favorite girl and I had a welcome-home drink together. Of all the bevvies I’ve consumed, that one may be my all-time favorite.
A few days after school started, and a week or so out of the hospital, Macy & I had tickets to see Jack Johnson play at the Woodlands pavillion. After a string of disappointments all summer, I was determined to make it to the show. It poured rain on us and traffic was horrendous, but we made it and had a great time. What would be an already-sweet occasion was all the better because I was there, upright and out of the house!
I got through the rest of August and September without incident, and was starting to think maybe, just maybe I would be able to actually make and keep some plans that didn’t involve a hospital.
October marked my first foray into Breast Cancer Awareness Month as a survivor. While always aware of the fact that every October is earmarked and punctuated with lots of pink ribbons, it’s a different experience on this side of a cancer diagnosis. I was tickled pink (sorry, couldn’t resist), when Payton’s baseball team played in this tournament.
Next up was an event that was huge for me: the Witches’ Open tennis tournament at our club. I went into my double mastectomy in the middle of our tennis season, not knowing how the surgery would affect my game. Of course it never crossed my mind that I wouldn’t get my game back, the question was how much and how soon. So playing in the Witches’ Open was a stellar event. Not only did I play with my longtime running buddy, Staci, but we won! I’m pretty proud of our little trophy.
That same night, still basking in the sweet glow of victory from the Witches’ Open, I made a return trip to the Woodlands pavillion for the Maroon 5 concert. Talk about a perfect day: tennis then a road trip & dinner with super fun girls, then the show. That great day slid into a great night, and again I was beyond happy to be upright and out of the house.
As if this month hadn’t been great enough, the last Friday night in October was the icing on the cake. I gathered by BFFs for the first annual Pink Party. Prepare to be seeing photos of this event every year for the rest of my life. It was that good. Many a nights laying in the hospital bed, I thought about what I was going to do once I finally got well enough to do something for my friends to show my appreciation for all the love and support they’d so freely given during the worst time of my life. The Pink Party was all I had envisioned it would be, and the fact that I was able to put on the dog for my girls was monumental for me.
Next on the calendar was Thanksgiving, and at the risk of sounding totally hokey, I had an awful lot to be thankful for this year. At first, as we approached the holiday, I tried not to think too much about it, for fear that reflecting back on all that had happened would overwhelm me. Then I realized that’s whacked, and instead of avoiding it, I should be relishing it–every bit of it. Another major triumph for me was making my mom’s famous crescent rolls. I’ve made them before with limited success, but this year, they rocked.
After Thanksgiving of course was Christmas, and the first ornament to go on our tree was this one: the cocktail shaker that says “Shake It Up.” I intend to do just that in the New Year.
And for the record, it was Macy who picked that ornament to go on first, in my honor. That girls knows me so well. Like most families, we have lots of cute and meaningful ornaments in our collection, but it makes me smile that she chose this one to kick off our Christmas season.
So as 2010 draws to a close, I can’t say that I’ll miss it. Unequivocally, it has been the hardest year ever. But amid the chaos and confusion and abject misery, there were a whole lot of bright spots. Those moments and memories outshine the yucky stuff.