Breaking news
Posted: April 12, 2011 Filed under: breast cancer, pets, Surgery, tennis | Tags: cancer battle, exercise and breast cancer, family, golden retriever, kids, leopard gecko, post-mastectomy, reconstruction, recovery, riding bikes with kids, survivor, tennis, workout after surgery 6 Comments
We interrupt the “All Napa, All the Time” marathon with breaking news. Imagine the tornado sirens going off right now (or maybe that’s just in my head). If you’re looking for news of Day 2 of our recent Napa adventure, you’re gonna have to wait.
Yesterday I did something I haven’t been able to do since The Big Dig. I’m very excited about it. It’s been 5 weeks since the excavation that gutted me like a fish in an effort to restore my post-mastectomy sunken chest. 5 long weeks. There are lots of things I’ve been unable to do, and y’all know I’m a very impatient patient. I tend to rush things and push the envelope, and sometimes that results in a set-back, or at the very least, a lot of frustration for my handlers. I’ve been trying, really trying, to be patient, to not rush things, and to avoid any potential set-backs. I’m not much of a people-pleaser by nature, but I do try to keep my handlers happy. They make a lot of noise when they’re unhappy with me.
I rode my bike.
Yes, that’s the breaking news.
Hope you were sitting down, because it’s really big news.
See, I’m one of those weirdos who loves to exercise. I’m restless and have a strong “productivity” drive. Like how some dogs have a high food drive, or our crazy dog Harry has a high “must have something to carry in my mouth” drive, I have a high
“productivity” drive. I also like to eat. And drink. But don’t like when my clothes don’t fit, a wonky equation to say the least. Some people don’t care much about food, and I don’t understand them. I’m usually planning my next meal as I’m eating the current one. Different strokes, people.
I’ve mentioned before in this space that I’m not good at lying around, being lazy, and doing that thing called relaxing. What is this practice of which people speak? Apparently I missed the memo, because I’m no good at it.
All this to say that being grounded for the last 5 weeks has been hard for me. I’ve really missed my daily exercise. Whether it’s tennis, the gym, or riding my bike, I miss it. And yesterday, I rode my bike.
Glory be!
Macy and I have a routine of riding to the pet store every day after school to buy crickets for Cincko, her leopard gecko. He’s got a big appetite, and I’m always afraid he’ll start banging on the sides of his tank if he doesn’t get fed. He eyeballs Pedey, our little dog, and puffs himself up as if he’s going to attack that dog the way he pummels the crickets who are dropped into his tank. Thus, the need to procure crickets is a big one, and I haven’t been able to ride with her since my surgery.
Yesterday after dinner, she wanted to go for a ride. Not to the pet store, but just around the neighborhood. After proving to myself and my handlers that I could keep up in Napa last weekend, I felt good about giving it a try. I told Macy I’d do a lap down the driveway and see how it felt. A test run, of sorts. If it didn’t feel good, I’d concede. She reminded me not to push it, that we could wait until I was more healed. That child knows her mama well.
The test run down the driveway felt fine. Felt better than fine: it felt awesome. Other than a little tightness across my abdominal incision, it felt like old times. It’s true that you never forget how to ride a bike, and my muscles remembered how to fire their pistons to propel me forward. I wanted to get down on my knees right there in the driveway to thank the great gods of healing for bestowing their kindness upon my beleagured and battered body. But that would have caused Macy to roll her eyes at me and say that I’m embarrassing her, again, so I refrained.
Instead, we made a 2-mile circle around our neighborhood, dodging pedestrians, watching for bumps in the road, and intentionally riding through sprinklers. We enjoyed the drier-than-normal Houston air and rejoiced in the birdsong. We admired the neighbors’ yard work and noticed how lush and green everything is in our part of the world.
It was a very good ride.
Ok, this is the part that my handlers should skip over. Y’all don’t want to read this; I worry about your blood pressure.
As I reflected this morning on yesterday’s ride and conducted my mental inventory of how much my various hotspots hurt, I realized that they didn’t really hurt. Not any more than usual. Maybe I really am healing after all. Finally!
Satisfied, I ran through my workout options for today: I could ride my bike again, I could take Harry for a long walk, I could go to the gym for cardio or for strength training. Then I realized that it’s Tuesday. It’s tennis drill day. I haven’t drilled with my team in 5 weeks. I could go to drill! Yes, I could go to drill. I may have to dust off my racquet, but I could go to drill.
Ok, handlers, you can start reading again.
Then I realized that I’d better settle down. I’d better take it easy. I’d better ease into it and not go head-long, full-speed into resuming my normal life.
Maybe next Tuesday.
Tomorrow is a big day
Posted: April 6, 2011 Filed under: breast cancer | Tags: birthday celebration, breast cancer, cancer battle, champagne, Domaine Carneros, get-away, infectious disease, IV antibiotics, mastectomy, Napa, Pesu, post-mastectomy, recovery, vacation, wine, wine country, wineries 7 CommentsI’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.
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.
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. 
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.
But starting tomorrow, if only for the celebratory weekend, I’m going to savor every bit of the destination.
Even if my titanium port-a-cath sets off the security alarms and I ended up getting frisked.
Even if traffic is heavy and the plane is late.
Even if I’m stuck sitting next to a mouth-breather on the plane (no, I’m not talking about Trevor).
Even if the weather turns yucky.
Even if the ever-present antibiotics have killed off some of my wine-savoring tastebuds.
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.
I may just skip all the other wineries and stay right there.
When you suspect MRSA…
Posted: March 27, 2011 Filed under: breast cancer, drugs, infection | Tags: AstraZeneca, breast cancer, butterfly needle, cancer battle, CCSI, cefapim, Cubicin, infection, infectious disease, IV drugs at home, jugular vein, life before cancer diagnosis, MRSA, post-mastectomy, Power Port, shopping, Vancomycin 6 CommentsI 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.
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.
Stop the ride: I want off!
Posted: March 25, 2011 Filed under: breast cancer, infection | Tags: blog, breast cancer, cancer battle, cancer diagnosis, DIEP, fortune teller, hospital, infection, karma wheel, mastectomy, microsurgery, MRSA, mycobacterium, needle aspiration, new boobs, plastic surgery, post-mastectomy, Rand McNally, reconstruction, recovery, Vancomycin, Zyvox 17 CommentsWas it really just yesterday that I blogged about how I rarely have trouble coming up with a topic about which to blog because my medical life is such an extreme cluster? Yes, I believe it was. Is it weird to quote yourself? Hope not, ’cause here goes: “…the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.”
Really??? Ya think? I especially like the “flare-up, break-down, or blow-out” part. I really appreciate a good turn of phrase, even when it’s describing my own hot mess.
Although I would love to parlay this instance into a new career as Madame Z, the all-knowing and all-seeing teller of fortunes, I know I’m not prescient. Oh how I wish I were, and I could see how this complicated tale would end.
I got some news yesterday that well, for lack of a better word, sucks. Just sucks. This week has not been good. I could blab on about all the reasons it’s not been good, first and foremost my own deranged impression that by this point, 3 weeks post-reconstruction, that I’d be on the mend and getting back to my normal life. Hahahahahahahahahahahahahaha. So funny. So deranged. So sad.
I won’t keep you in suspense, although the childish side of me thinks if I wait a little longer to spill this bad news, it won’t be entirely real. There is a moment of suspending the two worlds, the wished-upon-a-star-for-best-case-scenario and the hard-core, cold reality of bad news crashing through some already pitifully low reserves of cheer and optimism. That moment before speaking or publishing the reality of the latest bad news is precious, as it allows me to believe for just a moment that in this 50-50 shot, the odds may finally turn out to be in my favor. I’ve had some statistically unlikely things happen (cancer diagnosis at age 40, no family history, post-mastectomy infection), and I’d like to think that the great karma wheel is spinning my way.
But alas, it is not.
The news of my latest pathology report tells me that the giant karma wheel is not only refusing to spin my way, it’s come unhinged and is crashing toward me.
Smoosh me now, great wheel. Just get it over with.
The week began with a needle aspiration and the culturing of fluid to confirm or deny my suspicion that the infection was presenting itself. Dr Spiegel held out hope that these symptoms were just part of the normal healing process after a long, complicated reconstruction surgery. She wasn’t around this past summer for the infection saga.
The pathology confirms that I have a MRSA staph infection. In addition to the mycobacterium that is my ongoing nemesis. If you feel so inclined to learn a bit more about these bugs that make me want to cuss nonstop and invent new ways in which to curse and rant, just click on one of the handy links. If the text is a color other than black in this workspace, you can click it and get all the info you can hold on whatever fascinating topic is at hand. Today the topic is bacteria, followed closely by cussing and sticking one’s head in the oven.
A staph infection is sucky enough, but an MRSA is worse. It’s drug-resistant and hard to treat. The mycobacterium is very drug-positive (like me) and not hard to treat, but hard to kill. It moves slowly and reproduces slowly, so it doesn’t often avail itself to the stream of antibiotics entering its domain every 12 hours. The drugs keep coming, but don’t break through very often. Hence the need for the long-term antibiotic regime. 225 days long and counting. It’s also hard to tell if it’s cured. The best way to tell seems to be stopping the antibiotics and waiting to see if the symptoms appear.
I’m still waiting to hear what my infectious disease team plans to do about this latest development, but suspect it will involve adding either vancomycin or zyvox to my minocycline & bactrim habit.
No, we don’t know where this staph infection came from, if it was contracted during surgery or was already there. I think it was already there. Way back in July, when the post-mastectomy infection hit the fan, before the mycobacterium was diagnosed, many cultures were run. Myco is very hard to diagnose because it’s so slow-growing; it can take 6 weeks to present in a culture. By the time it’s diagnosed, you can be all better or really sick. I was really sick. I did have a staph infection at some point this summer, so it’s possible that this is the same one and it’s been lurking around waiting for a good opportunity to become more of a nuisance. Statistically speaking, it would be crazy rare for one person to have contracted not one but two infections during surgeries, but stranger things have happened. I don’t know enough about infections to know what the relationship is between the staph and the mycobacterium: do they travel together or is one opportunistic, presenting itself when its predecessor has already set up shop?
What I do know is that the new infection is a coagulase-negative piece of junk that not only makes me feel bad physically but also worries me. A lot. I try hard not to borrow trouble and to keep the “what ifs” at bay, but adding a new infection to an already crowded field makes me worry. And the fact that the new infection is creating physical symptoms in my newly created breast is very worrisome. Dr Spiegel spoke on Monday of worst-case scenario being the need for a simple outpatient procedure to excise infected tissue, clean and debride, and stitch it up neatly. She said the biggest downfall there is that it creates another scar.
Uh huh. Yeah. As if I’m worried about another scar.
Rand McNally would love a chance to copy the lines and tracks and planes that the scars have created on my chest. Any my belly. And even my poor little belly button. Sweet little belly button was just minding its own business when it was callously sliced off and stitched back on in a new location. Poor baby.
So suffice to say, another scar is the least of my worries. And having been down this road before, I know that there’s nothing simple about excising and debriding infected tissue. Especially when that tissue has already been sliced & diced, carved and stretched and pulled practically into nonexistence.
I really hope I don’t have to do that again.
Last summer, in the heart of the infection mess, I’d had it. I was done. I didn’t think I could take any more. A cancer diagnosis and a bilateral mastectomy 3 weeks later followed by a nosocomial infection was too much. 23 days in the hospital, 3 additional excision surgeries, and more missed opportunities of summer fun and precious memories that I care to recount here.
This latest surgery, the reconstruction, was supposed to be the end of all that. It was supposed to be a symbol, a port in the storm, a beacon of hope. I’m not a big believer in panaceas, but this was supposed to be it for me. One last excision and debridement of the infected tissue, exactly 6.2 liters of antibacterial wash, healthy tissue transplanted from my belly, AND a brand new blood supply, a la microsurgically transplanted blood vessels was supposed to fix all my troubles and get me from victim to survivor.
What a load of hooey.
I’m gonna have to invent some new cuss words.
House arrest
Posted: March 24, 2011 Filed under: breast cancer | Tags: blog, breast cancer, cancer battle, City Island, genetic marker testing, JP drains, Kathleen Sebelius, online gambling, online gaming, plastic surgery, post-mastectomy, reconstruction, recovery 9 Comments
Haven’t been feeling very bloggy today, which is unusual for me as I’m rarely at a loss for words. The norm is for me to wake up with a blog topic in mind, and I generally have several other topics infiltrate my brain every day as I go about my daily business. Some are interesting, and if the planets are aligned properly, I jot down a note or enter the info in my phone for later, but sometimes I don’t slow down enough and think I’ll remember it all on my own. Ha! That seldom works out for me. Who knows what brilliant blog posts are lost in my grey matter because I was cocky enough to think I could hold that thought in my head while my brain is on overdrive, processing all the medical hoo-ha since surgery.
Of the blog topics that do survive to see the light of day, however, some make the cut, some don’t, and lately the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.
But today the blog muses weren’t speaking to me. I chalked it up to the cabin fever, ennui, and general restlessness that accompany my current house arrest. I’ve been laying low all week (and it has been a long week) for a very specific purpose: to decrease the amount of fluid exiting my body and entering the JP drains so that I can get those damned drains removed.
I’ve had a bit of a history with the drains, going back to the mastectomy, and because I’m a busy-body, my drains’ output tends to be high and they have to stay in longer. I think I had 2 drains for 5 weeks post-mastectomy; can’t remember exactly but it felt like forever, and once they were finally removed, skin was growing around one of them and had actually adhered. Yes, the removal was ugly and painful.
But that’s not why I hate the drains. I can handle the ugliness and the pain. I can handle the discomfort of a rubber tube stitched into my side. I can handle the hole in my body with said rubber tube coming out. I can handle the creepiness of not knowing exactly how far that sucker is threaded through my body. I can handle feeling like a medical freak show when I go in public with said tubes sticking out and snaking from my sides into my sling bag. I can handle the wardrobe challenges presented by needing to cover up yet accommodate and not smoosh, all at the same time. I can handle the draining of them everyday, even though what comes out is nasty and not always liquid (and that’s all I’m going to say about that).
I understand the value and purpose of JP drains. I know that if the drains weren’t sucking the fluid out, it wouldn’t magically go away but would instead pool inside my body and create a seroma. I need a seroma, or any other complication, about as much as I need a hole in the head, as my sweet mama used to say. So I make peace with the drains, even though I curse them under my breath and despise them and rue the day they entered my life. Seriously rueing the day here.
I’m not loving my house arrest. I’m not so good at the “doing nothing” phenomenon that many people seem to embrace. I don’t enjoy this “down time” and I stink at being lazy. I especially don’t enjoy forced laziness. It’s just not for me. I understand and accept it but not happily and I would kick & scream to protest but that’s not very restful.
Day One of House Arrest was easy because by the time I got home from my appointment with Dr Spiegel at the med center, it was almost time for school to be out, and the day was half over. Day Two passed uneventfully; I watched a movie but don’t even remember now what it was. By evening, I was starting to get cabin fever but managed not to bitch about it too much. Day Three of House Arrest seemed longer than Day Two, but I watched another movie that was worth mentioning, and I may even have to write a review of; if you can’t wait for that, the movie is City Island with Andy Garcia and Juliana Margulies. It’s good. Really good.
The highlight of Day Four of House Arrest was the arrival of Melanie and little Luke of the million-watt smile. Melanie is kind enough to bring me a big cup of Green Drink and to blowdry and flat-iron my hair, since I’m still not supposed to lift my arms that much. We had a great visit and there’s a lot to be said for having clean hair, but there’s something kinda sad about the highlight of the day being over by 10 a.m. Sigh.
I’ve discovered that sitting in front of the computer can be a gigantic time-suck. Who knew? I usually sit at the computer (and “sit” may be stretching it, since I tend to perch on one corner of the desk chair, all the better to jump out of it fast and move on to the next task) briefly. I’ve never been one to spend all day in front of the computer. I don’t really enjoy reading from the screen (yet I love my kindle, so way to go, kindle creators). I’m not a gamer, either, so I don’t lose myself in the online gaming world. I thought about taking up online gambling, but I like to shop too much to throw my money away, so that’s not going to happen.
I do get a lot of info from various breast cancer organizations, and I usually skim the bevy of emails in my inbox on the topic, deleting more often than fully perusing. This one caught my eye, though, both because I have time on my hands to notice it, and because it seems so insistent and urgent. This one email contains multiple links, each one clamoring for more attention than the next:
Don’t Restrict Access To Mammograms!
Help Women With Breast Cancer by Covering Their Medical Bills!
Support Breast Cancer Genetic Marker Testing!
On Sale: Pink Ribbon Water Bottle!
Stop Canceling Women’s Policies!
Fund Women’s Exams in Remote Guyana!
Also a lot of urging me to tell Secretary of Health & Human Services Kathleen Sebelius what I think and which programs she should and should not endorse.
I’m not making this up. Even in the midst of my wealth of free time, I couldn’t make this up. The email is from a group called Greater Good Network! No idea who they are or how they got ahold of me, but I do know this: they use a lot of exclamation marks. Yes! They do! A lot!
That makes me tired. The forced excitement! And the wide range of serious health issues! And the political ramifications! I’m going to have to unsubscribe from their distribution list. Reading one email made me tired. Wonder if I have time for a nap.
Ithaka
Posted: March 23, 2011 Filed under: breast cancer, literature | Tags: breast cancer, cancer battle, Cavafy, DIEP, Grateful Dead, Greece, Greeks, Homer, immigrants, Ithaka, Odyssey, plastic surgery, poetry, post-mastectomy, reconstruction, recovery, superhero, survivor, Versed 4 CommentsHow appropriate after yesterday’s post that the first thing I read today is an excerpt from the poem “Ithaka” by Constatin Cavafy. Remember that yesterday’s post contained a photo depicting my personal vision of paradise? Guess what Ithaka looks like?
Also appropriate is that Amy Hoover showed up on my doorstep last night with a real-life superhero cape, which I clearly need to continue this “journey.” She doesn’t need a cape, because she really is a superhero, but her youngest son, Carter, has one and was sweet enough to loan it to me. We’re changing the C for Carter to C for Cancer-killer. I love the cape.
I’ve been struggling with the “journey” part of my recovery from major reconstruction surgery. I’m not a journey kind of girl; I’m all about the destination. Don’t care how we get there, it’s the getting there that matters to me.
Well, guess what? On a “cancer journey” you’re never “there” and the idea of being “done” is laughable because there really is no end point. There are transitions and transformations, and at some point one does graduate from cancer patient to cancer survivor, but there aren’t any signposts or mile markers along the way, so hell if I know where I am in this whole journey. I can say that so far, to quote the Grateful Dead, “What a long, strange trip it’s been.”
Enter Constantin Cavafy.
Fellow Greek, also a wordsmith (although he was way, way better at the craft than I). He was born and died on the same day, April 29 (1863-1933). I must say, that’s a terrible way to celebrate a birthday; I hope he got a piece of cake before he croaked. I also think it’s terrible, although understandable, that his family chose to Americanize their surname, Kavafis. My dad’s dad came over from “the Old Country,” as the Greeks refer to the homeland, speaking no English with very little money, like millions of other immigrants. Once he settled and raised his family, he wanted them to be Americanized, to shake off the immigrant stink that was considered unsavory, even though the USA is purported to be a melting pot. Thankfully, my Papou did not Americanize our surname, although my dad did change the spelling slightly in 8th grade, from Katopodis to Katapodis, to make it easier for the sports announcers to pronounce it properly; Kat-uh-po-dus instead of Ka-top-uh-dus. True story.
So Kavafis becomes Cavafy, and Constantin writes some poetry. He published more than 150 poems, the most well-known, “Ithaka,” after he turned 40. Some might say he’s a late bloomer, but those of us in the over-40 crowd say, Giddyup.
“Ithaka” was written in 1894, revised in 1910, published in 1911 then published in English in 1924. Talk about a journey: 16 years to complete, then another 13 years to reach a wide audience. I hope Constantin was more patient than I am. I’m sure glad he had a few good years between the poem’s success and his death, and I hope he savored it.
Some believe that the subject of “Ithaka” is Odysseus, from Homer’s epic poem The Odyssey. I think, however, it applies to anyone who is on a journey, and although Ithaka was the finish line or end point for Odysseus, the location is superceded by the ideal.
“Ithaka” begins with some advice for the traveler, which I think applies to lots of journeys (although on my particular journey I don’t have to “hope the voyage is a long one” because it is, boy howdy it is).
As you set out for Ithaka
hope the voyage is a long one,
full of adventure, full of discovery.
Laistrygonians and Cyclops,
angry Poseidon—don’t be afraid of them:
you’ll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Well, I certainly have encountered my share of Laistrygonians, Cyclops and angry Poseidons in this “cancer journey.” While Cavafy referenced these giants (cannibals, one-eyed monsters, and the God of the Sea, respectively), I believe such bad-boys take numerous forms and can also be representative of disease, infection, and hardship.
Ok, so far my voyage has indeed been long, with what some would consider adventure and discovery, and full of bad guys, and I honestly haven’t been afraid of them. Frustrated by and utterly sick of them, yes, but not afraid. So far so good.
I’ve tried to keep my thoughts raised high, and thanks to my mom’s “walk on the sunny side of the street” schooling, I think I’ve done that. Sure there have been some bad days, but I’m not going to sit around asking, Why me? when it really doesn’t matter, and it certainly doesn’t change anything.
I can’t say that I have a “rare excitement” stirring my spirit and body, although maybe I did while on morphine. More likely it was while on Versed. That’s one of my favorites; such a happy place.
“Ithaka” goes on to extol the pleasure of steaming into unseen harbors on a summer morning to “buy fine things” and “gather knowledge from their scholars.” Hmmm, exploring, shopping, and learning: now that sounds like my kind of trip. Cavafy implores us to keep Ithaka always in our mind and to remember that “arriving there is what you are destined for.”
Now here’s the part that really speaks to me today, as I continue to struggle with the down-time of recovery, as I want to be “back to normal” and wait impatiently for the passage of time and the reaching of milestones that will prove that it is so.
But do not hurry the journey at all.
Better if it lasts for years,
so you are old by the time you reach the island,
wealthy with all you have gained on the way.
I have a problem with the idea of the journey lasting for years, even though I know that it’s reality. I can accept it, but I don’t have to like it. I do hope that I am indeed old by the time I reach the island, and I already feel wealthy with all I have gained on the way.
This is Kayte, not Trevor
Posted: March 19, 2011 Filed under: breast cancer | Tags: Arnold Schwartzenegger, Austin, breast cancer, broken heart, cancer battle, cancer diagnosis, cancer journey, champagne, dr appointments, hot tub, Houston, Justin Timberlake, Karl Lagerfeld, plastic surgeon, post-mastectomy, reconstruction, recovery, survivor, true friends 4 CommentsHi Pink Underbellyers,
This is Kayte VanScoy posting under Trevor’s PU log in. I wonder if Nancy’s ever given a thought to the fact that her blog is peee-yewwwwwww. For sure, the “Cancer Journey” (cue the violins) has been, so why not.
I’m in town imposing on the unending hospitality of the Hickses. I’ve known Trevor, Nancy, and Ed, because, let’s face it, Ed is part of this constellation too, since 1997 or so when we were all friends through the Austin Chronicle–Holt, Rinehart axis in Austin’s writing and editorial community. Eventually, Ed moved in and became my roommate, and that’s how I get so lucky to be able to pretend that I’m family around here. The truth is, we lost touch when I moved to New York to become rich and famous (I’m still waiting). But enough about me. Seriously. Enough about me already this week. (At first I wrote “weekend,” but then I realized that other people are working as I type this; it just always seems like the weekend around here.)
Hanging out with Nancy and Trevor and their kids and Ed and the dogs and Amy Hoover, too, who is a force of nature, makes it seem like life, no matter what comes, is just one pool party away from working out for the best. Look, PU-ers, I’m not going to lie. This has been a really rough couple of days for me. I didn’t exactly plan it that way, but I brought some heartbreak to Houston with me. Because, you know, it’s always all about me. Right? Does someone have a surgery to recover from around here? Is someone dealing with their wife and mother being not at 100%, when she’s usually at 150%? Apparently, I don’t care. Me me me. Sob sob sob.
Nancy makes it seem like my troubles are as big as anyone’s, including hers. And then…. I go to her appointment with Dr. S today.
Now, I’ll just stop here and say that when Nancy and Trevor and I reconnected on Facebook, we had been out of touch for many years. They had moved to NC and back, had another baby, and moved away and back to the Houston area. We had only been blissfully (for me, anyway) back in touch for a few weeks when Nancy got her diagnosis.
You never know how you’re going to react to something, but for me Nancy’s illness has made me realize how much I value my friends, how life is short, how old we really all are now… really, lots of really profound stuff. Maybe it’s been like that for you, too. It makes you think and try to see if you can pull something better up out of the middle of yourself. Those are always good challenges to have… right? I guess so. Whatever. Life.
Anyway, I offered to “help” Nancy and basically invited myself to town. So far, my “help” has looked like me staying out till 5am with other people, waking the whole house up, napping, hungover, through the day, then drinking champagne in her hot tub. You’re welcome! No, really, it’s nothing. I’ll try to do the dishes tonight… ? I guess I’m just not one of those “helping” people.
Now. Amy Hoover. That’s another story. Let me tell you… that’s a whoooole other story. Talk about Wonder Woman. I would give anything to have a heart big enough to contain other people’s needs. I’m happy to meet someone so competent, focused, giving, and living in love. Reminds me what is possible when we ask more of ourselves.
All right. I’ll get to it now. Here’s the story part of the blog: so, here we go… me, Nancy, and Amy, off to Dr. S’s for Nancy’s seeming daily appointment.
Okay… hi again. I saved this yesterday evening so that we could all sit by the pool and talk and eat and visit. This scene is pretty good, you guys. Pooltastic.
Now. Getting back to Nancy, her appointment(s), and Dr. S: Listen, if you have not been so privileged as to be invited into the presence of Dr. S, please endeavor to procure an audience with His High Holiness, the Plastic Surgeon’s Plastic Surgeon. And, you know, no joke, the man is more than skilled. He is more than artful. He is OBSESSED. He is the Picasso of the female form. Which is also another way of saying: Nancy looks amazing. She is in very good—and very specific—hands.
Now that’s just the intro. That’s the nice way of easing you into the jarring reality of Nancy’s daily life. When I was here last summer, Nancy was still battling her infection and still coping with an unreconstructed, post-surgical mastectomy site. I can’t really describe what it was like to see the Amazing and Beautiful Nancy in so much pain. It wasn’t comfortable to see. And then she invited me into her bedroom—with Amy Hoover—to observe the changing out of her wound dressing and, I don’t know what you call it but for lack of a better term, wound stuffing. The generosity of this invitation… I cannot overstate it. It was deeply moving, as much as it was unsettling. She even, and seemingly without thinking about it, invited in my friend Sarah, whom she had never even met, to watch the procedure. I don’t know why she did, but of course I was curious. I didn’t know that Sarah would want to but (and her dad is also a plastic surgeon, so perhaps it’s just a natural, genetic inclination) of course she was curious too. I realized, then, that Nancy was so much more than my old, smart, sweet, sassy, challenging, gorgeous friend from Austin. She is someone who does not see her body as only her own. She is so generous that she understands that to share her journey with me and with Sarah (and with all of you through this blog) is to expand and extend the boundaries of those who are ready to cope with their own cancers or the cancers of their friends, to grow the pool of people who will have a driving need to see research and fundraising get pushed to their limits as fast as possible. Although this journey, and her body, are certainly her own, Nancy is strong enough inside of herself to not feel stingy about her experience. I know that I could never offer as much to the world and she simply floors me. I am in awe of her and forever in her debt for inviting me in. My world is permanently changed.
Which brings us, finally, to the examination chamber of the ebullient Dr. S. His examination table more throne than bed, a leather club chair for me to lounge in, a rolling stool for Amy, and Nancy perched at the ready for what she calls, not unfittingly, The Dr. S Show. And in he comes, fanfare root-a-tooting, a fit and attractive man with dark skin, of some Middle Eastern or Asian descent. But who has time to ask after such trivialities as background? He blazes in and begins the performance, and Nancy—the Judy to his Punch, the Lucy to his Desi, the cream to his coffee—giving it back every step of the way.
First, down come the clothes and there is Nancy’s body in its glory, stripped to the hips. Now, I’m not a prudish sort, but from the unconcerned way in which she peeled off her kit you’d think her profession involved a pole or the transportation of chicken wings from kitchen to salivating male maws. I guess she’s used to it. She didn’t seem impressed. He, on the other hand, lit up. Not in a yucky way, but in the way of an artist unveiling his greatest work of art—behold, Nancy!
Like the cartoon painter, holding out his thumb to measure his progress, he stood back to take her in, stepped forward to touch, prod, palpate, and even just to elucidate. It was the longest, by far, that I’ve ever been in a room with a half-naked person and three dressed people having a conversation as if, you know, it just happened every single day of our lives like that. Of course, I was the only one there for whom it doesn’t. So, I mostly kept my big mouth shut and tried to take it all in.
First, there was the issue at hand. The Soup du Jour was the “divot,” as Nancy had come to call a thumbprint-sized indentation of her upper-right, newly reconstructed breast that had just drooped into existence in the past 24 hours, along with some new and concerning pain. This was the exact site of the infection that had so bedeviled her and she was worried it was all coming back.
Right off the bat, with the most self-assured manner imaginable (imagine Justin Timberlake meets Arnold Schwarzenegger with just a soupcon of Karl Lagerfeld), Dr S announces that this is nothing to worry about, there is no infection present, and that everything looks amazing. This indentation can be filled with injected fat, or they could go back in and fix it in another surgery.
Is he serious? Another surgery. He’s blasé. She is too. The explanation for it, he says, is simple. One of her ribs had to be carved out to allow a blood vessel to pass through, to supply her new tissue. I shudder at the carving motion he makes in his finger, showing how the rib was sliced into with a crescent moon. Again, this registers almost zero with Nancy & Amy and I keep my yapper zipped.
Now, in a regular doctor’s visit, Nancy would cover up as soon as possible, he would busy himself with scribbling something and mumble his way out of the room. You know how it goes. Right away, however, and Nancy seems to understand his need to do this, he begins to survey “the field,” as it were. Nancy has a hip-to-hip incision with two drains on either end. This is where The Dr. S’es harvested the fat she had so obligingly grown for them to build her new breasts.
He sways over to the paper towel roll on the wall, whips out a square of paper, takes out a Sharpie and begins to diagram the procedure. Nancy is rapt and I figure she knows what he’s talking about. Later, we both confirm that we were lost in all the medical jargon. I’m confident that Dr. S has no idea what’s going on with his audience and is even less interested. He continues on, diagramming, explaining, gesticulating. Finally he announces, “Now I do not even give this lecture to other surgeons!” Nancy, Amy, and I break out in a round of (bewildered) applause.
Unfortunately for Nancy and, one would think, the future of all mankind (given the intensity of his passion around it), two weeks post-surgery Nancy still hasn’t lost every single nubbin of extra fat globules from her hips beyond the incision. This cannot stand!
I can fix this! he quips, gesturing dismissively to the offending blobs. “We call these dog ears.” I put this in quotes so that you will understand that Yes, He Actually Said That. Nancy is NAKED, SCARRED, RECOVERING… but, dog ears. THIS is our priority. My mouth snapped open and didn’t close for several minutes. He wasn’t done. And this, he sweeps his hand up her side a bit–not touching her, but seemingly carving into her–“You have no waist.” Again, Yes. He Said That Too.
I don’t even think I had time to be shocked. Or… you know it was just one of those situations, like walking into a market in Marrakesh, where you just have to let it all wash over you and vow to try to remember all the sights and sounds later.
Of course, Nancy is still Nancy, folks. If anything This Cancer Journey (insert Lifetime movie music here) has only hewn her into more of what she always was—a tough cookie, and sweet to boot. I can’t remember exactly what she said, but it was something along the lines of, “Hold up there, buddy!” Amy, Nancy’s constant, devoted, caring, and almost superhumanly nurturing medi-buddy, also reacted. They’re used to this type of onslaught of useful (no infection) and uncalled for (dog ears? really, dude?) information spilling forth at a clip.
“I have a waist! What are you talking about?”
“Because I gave you one, you see. You didn’t have one before.”
Now look. Women argue with men. Wives argue with husbands. Friends argue with friends. But until you’ve witnessed the debate of a beautiful and self-possessed naked woman and the plastic surgeon who feels more of a right to claim her beauty for himself than her husband, herself, and, as far as I could tell, even God Almighty could take credit for, then you have been spared the edges of a couple of very sharp dueling scalpels, let me assure you.
Give and get, back and forth, round and round they go. He asserting, she parrying, she wryly pointing out his clear social deficits, he roundly ignoring these helpful hints by turning, again and again, to the centrality of his craft. Indeed, isn’t that why we’re all here? Because Nancy is the canvas and he its master?
But. No. No, indeed. Because Nancy is no kind of plastic surgery bunny. She is a survivor. A WARRIOR, really. I’m not really a pink ribbon type. I’m one of those people who says things like, “Where’s my Fun Run?” and other such obnoxious, self-centered garbage. I enjoy provoking and being contrary and I do not enjoy, any more than Nancy does, coddling and cooing over every emotional need. But Nancy? She is something else. She has kicked cancer, infection, and reconstruction in its big fat fanny.
Before you know it (and not before I’ve snapped a series of pretty hilarious and totally covert photos of Dr. S on my iPhone), we’re wrapping up the burlesque portion of the program and transitioning into the grotesque. We troop into his office–he seems completely informal and unconcerned about this invasion of his personal space, basically totally unlike every other fancy pants specialist I’ve ever been around–to behold his treasure trove of photos of Nancy’s progress over time. At first I think there is some point to this, that it is part of a regular office visit and part of Nancy’s treatment. As he clicks through the photos and he points and she points and he asserts and she parries I realize, oh, no, I see. This is all just part of the performance art piece known as Nancy Visits Dr. S Again that they both, clearly, enjoy and thrive upon. They bring out the best in each other, and this is the best of the best, folks. Gladiator Wars.
Does she have a waist? There it is! she points. Uch, he scoffs. Me, mouth agape, hanging back. This goes on a really long time. Her breasts used to be “boxy” and now they are so much better. Eventually he will build her a nipple, its color to be added by tattoo. He goes out onto the Internet to show us how natural this result can look on other finished reconstructed patients of other doctors who, I guess, probably similarly after their Cancer Journeys, found themselves more interested in opening minds and hearts than covering up. Bless them and their candor. My heart peels open. My mind rewires.
The body is not the vessel; it is less, even, than that. It is just the sack of skin we carry around our hearts in, the perch for our big juicy brains, the tentacles we reach out to each other with. We can do with it what we will, as it will try to do back to us. It is a battle of the wills between the spirit and the cell, between love and pain, between courage and flesh.
Nancy is winning this battle and now that I have seen just how gracefully, and forcefully, and what the anatomy of her support system is like, I know how. I have limitations in life, I think. Somehow I would like to be part of this world that Nancy supports and that supports her back, but so far I’m not sure I’m equal to it. I’m a writer, a feeler, and kind of a weirdo. I don’t know how much I have to add. I don’t really do dishes or make beds—-I will, but you have to remind me every time. I don’t “take care of things,” so how can I “take care” of Nancy? Maybe you feel similarly confused about how to play a role in Nancy’s recovery process.
What I learned this weekend, though, is that Nancy takes care of her own dang self and thank you very much. But, she doesn’t mind a little company along the way.
Cranky, irritable, and just plain bitchy
Posted: March 13, 2011 Filed under: breast cancer, cancer fatigue | Tags: bad day, bitchy, blog, bloody mary, breast cancer, cancer battle, cancer diagnosis, champagne, crazy, hospital, infection, intense emotions, invitation-only blog, mastectomy, microsurgery, mood swings, plastic surgery, post-mastectomy, post-op, privacy, reconstruction, recovery, Shock Top, stress, vodka tonic 13 CommentsThat’s how I feel today. Don’t say I didn’t warn you.
If you’re not in the mood to read something scathing, if you’re feeling a little frail today, or simply don’t like bitchin’ & moanin’ then I suggest you move on, because I have a powerful need to get it out. Bleeeeeeeeeeeeeh.
Don’t know what set this off, and in my current state of utter bitchiness, I don’t really care. I’m just feeling pissy. Been fighting it since I woke up this morning, and am only 4 hours into it, so it’s gonna be a long day. I’m not too proud to call for help in the way of a bloody mary followed by a bottle of champagne followed by a Shock Top or two followed by an extra-tall vodka tonic with extra lime. Yeah, yeah, yeah, I know that alcohol isn’t the answer, and in many cases actually makes the problem worse, but today I don’t really care, and if you want to lecture me about the dangers of overindulging or how alcohol consumption is tied to increased rates of cancer recurrence, don’t bother. I already know that. But some days it just doesn’t matter.
Today is definitely one of those days.
The straw involved in this particular breaking of camels’ backs came when I decided to spend a little time mindlessly surfing the blog-o-sphere this a.m. in search of humor, inspiration, and distraction from my wickedly bad mood. There are a lot of good blogs out there, and if I ever get out of this funk, I plan to create a blogroll on my blog’s homepage, to share some of the greatness I’ve found. And I will do that. Y’all know me, once I set my mind to something, I do it. ‘Nuff said. But for now, I am waylayed, stymied, stopped in my tracks in my pursuit of a mood-elevating stint on the ‘Net.
Why? Because in the span of 10 minutes I came across 2 blogs that tell me I have to be invited to read before I can even click one single time to see if it’s a blog that appeals to me. WTH??? I have to be invited to access a blog I don’t even know if I’m going to like, much less return to or perhaps follow regularly? WTH???
Ok, on a normal day (whatever the hell that is), I might come across an “invitation only” blog and think, hmmm, that’s interesting, I wonder why it’s configured that way? I’m pretty new to the blogging world, and there’s a lot I don’t know about the wide and wonderful world of blogs. On a normal day, I might wonder: Is this invitation-only blog’s readership so huge that they have to separate the wheat from the chaff? Does the blog’s author feel particularly strong about privacy, as opposed to airing her dirty laundry, the way I do in my little blog? Is she just snotty and isolating in general but in particular toward other BC survivors who are trying to muddle along in this wretched “cancer journey” and seeking solace or answers from those sister souls who’ve been there before?
Maybe that blog author is just a bitch.
This blog author certainly is bitch-y. But I don’t think I’m a bitch. Maybe I am, but today, who cares? I don’t really think that other blog author is, either, although I can’t say for sure since her stupid blog is by invitation only. Screw her, I don’t want to read her stupid blog anyway. I’m gonna pack up my flaming bad mood and leave her holier-than-thou protected blogsite. Bitch.
The post-op instructions that I brought home from the hospital mention something about mood swings and periods of intense emotions. Apparently it’s all part of the “cancer journey” and in particular, the recovery from the major surgery required to try and put the pieces back together after a firestorm of mutated cells banded together to create some bastard tumors that burst through my milk ducts and invaded my system. Rude.
Maybe this is the mood-swing-and-intense-emotion portion of my recovery. Maybe this is the culmination of the hormone frenzy that goes on in my tired, taxed, put-upon body every single day, and today the frenzy got the best of me. Maybe this is totally normal for those of us in the midst of a “cancer journey.” Maybe this is just an ordinary, run-of-the-mill bad day.
Maybe it’s all of the above. One thing I do know for sure is that I am sick, really sick, supremely sick of all of this. I’m not a good patient on a good day, and I’m a hellabad patient on a bad day. Oh how I am sick of all this. Sick of the pain, yet leery of the pain meds. Sick of the drains yet aware of their necessity. Sick of the right drain leaking yet too pissed off to attend to it. Sick of the pile of dirty clothes with patches of bloody spots from the damn drain leaking, yet not at all motivated to start the laundry. Sick of the fact that I need to start the laundry, yet still haven’t been cleared to do any chores. Sick of chores needing to be done while I’m not cleared to do them, yet unwilling to seek help. Sick of having to think so hard about what to wear because of incisions and drains, yet unwilling to stay in my jammies another day. Sick of how hard it currently is to do the basic everyday things (like washing my face), yet not satisfied with the “it’s temporary” mantra that usually calms me. Sick of wondering if raising my arm high enough to reach a glass is the motion that will tear the micro-stitches and disrupt the healing of the micro-surgery, yet thirsty enough to reach anyway. Sick of worrying if I’m doing too much or being too still, yet too lazy to find the answer. And I’m sick–really sick–of sleeping on my back. I’m a side-sleeper but I have to sleep on my back, yet again, because I can’t lay on my incisions. Dammit to hell, I can’t even get comfortable at bedtime.
I’m 11 days into this recovery, and while my rational self knows that 11 days isn’t long enough to heal, I’m impatient and fidgety and ready to move on. But then I realize that when it comes to moving on, I don’t really know what that means. Baby steps aren’t my style. I’m more apt to pitch headlong and headstrong into something and just get ‘er done. Only, in this case, I don’t know how to get ‘er done. Have no clue. I’ve been on this “cancer journey” so long that I don’t exactly remember how to get ‘er done. Don’t even know what it is I’m supposed to be getting done.
All I know is that I’m cranky, irritable, and just plain bitchy today.
Round and round
Posted: March 12, 2011 Filed under: breast cancer, tennis | Tags: breast cancer, DIEP, Gus Portokalos, infection, issues, JP drains, liposuction, margaritas, My Big Fat Greek Wedding, nap, new boobs, plastic surgery, post-mastectomy, reconstruction, recovery, Shia LaBeouf, twins, wardrobe, Windex 7 Comments
Sometimes I leave the doctor’s office in need of a drink, and sometimes I leave there in need of a nap. Sometimes, I leave there needing both.
Yesterday was one of those “both” kind of days. It was my first visit to his office since the big surgery, and when I walked in the door, his nurse gasped, I can’t believe how well you’re walking! I told her the same thing I told my tennis teammates when I went to watch their match Wednesday: it’s been more than a week since the surgery; I’m done.
If only.
I’m wardrobe-challenged again, like I was post-mastectomy. While it seems like an eternity ago that I was scrounging through my closet after the mastectomy to find something, anything, to wear, it’s all coming back to me now. How complacent, how cocky I have been in recent months, thinking I can just pull any old thing on and get out the door. Now it’s once again a carefully orchestrated project that involves lots of shuffling, digging, flipping, re-hanging, and cursing. This time, though, the challenge is because the remaining drains are at the super-long incision on my belly. One drain on each hip, like an unruly set of twins. I’m starting to despise those twins. I got a mild scolding from Jenn (Dr Spiegel’s PA) when I saw her Tuesday because I was wearing jeans, and they don’t want anything to rub on that gigantic tummy incision. I may just start wearing my pajamas everywhere until that bad boy heals. Or maybe I’ll wear whatever I want and send the same message that Shia LaBeouf sent. Seemed to work well for him.
The first thing the good doctor noticed when he graced my exam room was that I have several bruises on my leg. I got him good, though, by telling him they were from playing tennis. The look on his face was priceless. Oh how I wish I had a freeze frame of that look. That moment between what he thought (she’s been playing!) and reality (no way she could have played already, it’s only 10 days post-op) shines in my memory as one of my favorite moments.
Every visit to my doc’s office results in innumerable nuggets of wackiness. First runner-up for nugget of the day was when his nurse said she thought my new chest looked really good. I said, yeah, if you’re into that sort of thing. What I meant was, if you’re into a mostly cleaned-up mess, a partially cleared train wreck, and that the docs did a great job with the concaved, ET-looking chest I ended up with after the infection. Compared to that fresh hell, the new, improved version is pretty amazing. And as a testament to the skill and artistry of the surgeons, yes, it’s great.
The highlight of yesterday’s visit came when the good doctor examined my tummy incision and took a look at my lower half. Remember how he thought I needed to gain a bunch of weight to provide the building material for the new girls? And how even after I gained several pounds, he was still convinced it wasn’t enough? Well now that the dye has been cast and the pounds that weren’t reallocated have stuck, he’s not happy with the extra bit that settled on my hips, and says, and I quote, “We need to suck that right out. We need to get rid of that. I’m going to suck that right out so it is gone.” I swear, There is no pleasing that man.
The Tennis Partner
Posted: March 11, 2011 Filed under: breast cancer, literature | Tags: Abraham Verghese, amazon.com, Atlantic Monthly, Cutting for Stone, drug addiction, El Paso, Harvard, medical school, medical student, physicians, post-mastectomy, recovering addict, tennis, tennis partner, Texas, The New Yorker 9 Comments
After reading Cutting For Stone, I was hungry for more from author Abraham Verghese. Wow, was this a great book. Like some of my other all-time favorite reads, it took me a while to get into this one, but once I did, I was so well rewarded. I felt a little bereft when it ended, another sign of a great book. The characters were so richly drawn, they truly seemed like real people, and I was sad to think I wouldn’t know what happened to them for the rest of their “lives.”
I’m not crazy; this happens with good books, and I’ve heard other people say the same thing so I know I’m not crazy. At least not in this case.
I searched in vain for more books by Abraham Verghese and although he’s written prolifically for such esteemed magazines as The New Yorker and The Atlantic Monthly, he doesn’t have dozens of novels at the ready for voracious readers. He has written a book called The Tennis Partner, however, which I quickly scooped up on amazon.com. 
Verghese is an infectious disease doctor and has been a professor of medicine at Harvard and Stanford, in addition to being a bestselling author. The Tennis Partner tells the story of Verghese’s friendship in El Paso, TX, with David, a medical student who is a recovering drug addict. Their friendship grows amid a shared love for tennis, and they both find the game to be “an island of order in the midst of personal chaos;” in Verghese’s case, his crumbling marriage, and in David’s case, his drug addiction.
One of the things I love so much about Verghese’s writing is his innate ability to describe a scene in such a way that makes it familiar and easy to visualize. For instance, when writing about moving to El Paso, Verghese says “This is the great promise of moving: that if you fold your life into a U-Haul truck and put it on the road, you will be given a clean plate with which to approach the buffet.”
Beautiful prose. Simple and clean, yet so on-the-money descriptive.
It’s a great story, not just because of the tennis. Both men were struggling with different things in their lives, yet tennis became the equalizer. Verghese says, “In the way we controlled the movement of a yellow ball in space, we were imposing order on a world that was fickle and capricious. Each ball that we put into play, for as long as it went back and forth between us, felt like a charm to be added to a necklace full of spells, talismans, and fetishes, which one day add up to an Aaron’s rod, an Aladdin’s lamp, a magic carpet. Each time we played, this feeling of restoring order, of mastery, was awakened.”
I get that. Wow, do I get that. One of the reasons I wanted to get back to playing tennis as soon as I could post-mastectomy was to impose order on a disorderly life. And guess what? 9 days post-reconstruction, I already can’t wait to get out on the court and put this mess in order.
One line in the book has really stuck with me, and I carry it with me in my game. David and Abraham are battling it out on the court, David being the more experienced and younger (read: more spry, less creaky, and speedier) player. He always manages to best Abraham, and after yet another victory explained his winning strategy. It’s very simple. “Remember, the one with the fewest errors wins.”
True, so true, and not just in tennis.
I love tennis, and I’m fascinated by how the human body works. I’ve written about this before, and now that my latest surgery is in the rear-view window, I’m again impressed with and amazed by how our bodies react and heal.
I’m also fascinated by doctors. Surgeons, especially. Not in the “reverence for the white coat” aspect of previous generations, nor because of the fact that they perform a very difficult job. There are lots of hard jobs out there, and I’m sure there are plenty of things other professions require that docs wouldn’t handle well.
It’s more a fascination with what makes them tick and how their minds work. I always want to ask my specialists, why did you choose oncology? why did you choose plastic surgery? I’m overly curious (some would say nosey) about the minutia of their jobs: how many patients call them after-hours? how long does it take to repay med school loans? what do you do to unwind and feel like a regular person? I mean, after say, a 7-hour surgery in which they restore order to a hellacious mess of a chest wall, do they wash up, drive home in traffic, pop a beer and veg out? Or do they refrain from drinking, even after a long day, because they can be called into surgery at any moment?
Verghese writes quite eloquently about the physician as a regular person and of medical humanism. He’s an old-fashioned doctor in a modern world, and he teaches new-fangled doctors his ritualistic bedside observations. He believes medicine is a passionate and romantic pursuit, not just a science.
Kinda reminds me of my own infectious disease doc telling me that in my case, because of the post-surgery infection, he was practicing the art more than the science of medicine. A lovely thought after months of exams, tests, and hospitalizations that had left me feeling like a piece of meat. Not Grade A meat, either.
As I prepared for my most recent surgery, I remembered a lengthy but compelling passage from The Tennis Partner. Even though my pre-surgery to-do list was a mile long, I found myself flipping through the book to find this passage. I wanted to re-read it, as if absorbing these words into my brain would somehow transfer into the surgeons’ hands as they cut me open and tried to repair the damage that had been done. It took a few minutes, but I found it.
Verghese was treating a young woman in El Paso with mysterious symptoms and no clear diagnosis. He writes about how as he entered her hospital room, he was looking for more than just physical manifestations of an illness:
“I was attentive to the aura of the room, vigilant for her icons — a doll, rabbit-ear slippers, a prayer card, her own nightgown. I inhaled discreetly so that her scents, all the eructations and effluvia that were hers, the redolence that night spell the name of the disease lurking below, could land on the free nerve endings of my olfactory nerve. Smells registered in a primitive part of the brain, the ancient limbic system. I liked to think that from there they echoed and led me to think “typhoid” or “rheumatic fever” without ever being able to explain why. If the diagnosis eluded us in the first few days, her chart would thicken as pages of computer printouts bearing witness to the blood urea, the serum creatinine, the liver enzymes, and other soundings accumulated. But no computer could make the mind-pictures I could form if given the right clues: a liver hobnailed by cirrhosis; a spleen swollen like a giant and angry thumb from mononucleosis; a smooth-walled cavity in the lung apex within which a fungus ball clatters like a bead in a baby’s rattle.”
I love the “eructations and effluvia” especially. That’s some good alliteration.
I also really identify with the patient, and know that I too have a chart that has thickened with computer print-outs and such. Not that it’s a contest, but I bet my chart is thicker than hers.












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