Another day, another antibiotic
Posted: March 26, 2011 Filed under: breast cancer | Tags: Antibiotics, breast cancer, cancer battle, Cubicin, Houston, hyacinths, infection, IV therapy, Lady Bird, recovery, satsuma, Siggis yogurt, tulip tree, wildflowers 9 CommentsAfter the outrageously bad day I had yesterday, I’m happy to report that things are better. Way better. I didn’t suffer from alcohol poisoning, nor did I eat my weight in ice cream, and I didn’t impair anyone’s hearing or make any ears bleed with cuss-word-filled rants, so we’re doing well on the moderation front.
All I needed was a tall flute of my favorite elixir, Piper Sonoma, and the presence of good friends. Once again, Jill & Keith provided both, and the time spent inhaling the heady fragrance of their about-to-explode-in-blooms satsuma tree was wonderfully restorative. 
Each one of these highly fragrant flowers will become an orange, and Keith may well have to stand under that tree full-time to support the weight of all that fruit. I fully expect to see you on my doorstep with bags full of fruit, mister. I’ll eat ’em raw, juice ’em, and mix ’em with any manner of alcohol. Last year I didn’t get to witness the tree in its pre-fruit state, and now that I have, I plan to make this an annual event.
It’s springtime in Houston, which means horrific allergies from the myriad things blooming, but that’s one thing (maybe the only thing) I haven’t suffered from of late, so I can enjoy the flora & fauna without the sneezing & coughing. Perfect. As I speak (or type), I’m peering out my front window to the lake across the street where Payton spied an alligator this morning, noticing the wildflowers in bloom along the bank and the hyacinths blooming in the neighbor’s yard. I love them both. Wildflowers because they just exist (thanks, Lady Bird Johnson), and hyacinths because they bring the smell of spring into sharp focus.
All the local Bradford pear trees are blooming, and they are as showy and beautiful as always. When they’re not showing off their blooms, they stay full and green year-round, and those leaves even turn colors in the fall, which we don’t see much of in the land of eternal summer.
Not that I’m complaining. It’s currently 77 degrees, sunny, with puffy clouds in the sky. The usual hint of humidity lingers in the air, but it is Houston, after all.
My tulip tree has flung itself into bloom in the backyard, which is always a lovely site. It’s not nearly as showy as the Bradford pears, but more colorful and exotic, for sure. Love the deep pink and the huge petals of each flower. Considering how precious little attention anything in my yard has gotten from me, it’s a wonder there’s any color at all, but thanks to the gardening fairy, otherwise known as Ed, there is, and I’m enormously grateful, especially during my house arrest. And no, I’m not saying that Ed is a fairy. Just that he shows up and takes care of my plants when I can’t. That’s how rumors get started, and that’s just not nice.
I’m getting acquainted with Cubicin, my new antibiotic. It replaced the old standby, vancomycin, yesterday when I had an unexpected reaction to the IV vanco. So far Cubicin has done an admirable job of trying to assert its dominance over my weary body, but I’m reserving judgement on how successful it will be in that pursuit. For now, it’s bobbing and weaving with the most elemental of antibiotic side-effects, which is frequent trips to the bathroom. Big whoop. At the risk of poking the caged cat, I wonder if that’s all it’s got. I certainly hope so. What I really don’t need is a return to the inception of all this antibiotic therapy this summer, when the drugs waged a holy war on my gut and gained quite a stronghold. Siggi’s yogurt at $2.50 a cup was my best weapon; yes, I know that Dannon and Yoplait are a fraction of the price, but they are neither Islandic nor delicious enough to elicit haikus from satisfied customers like this:
Tangy sweet mouthful
Clean as snow and good and whole
Pudding of my heart.
so yes I will spend crazy money on Siggi’s again if I have to. Take that, Cubicin. 
I bet no one has ever written a haiku about Cubicin. It’s such a strange drug name that even though I’ve typed it here and via text at least 100 times in the last 12 hours, I still can’t wrap my head around it and have to double-check it again and again. Who names these drugs anyway?
Sounds like a future blog topic waiting to happen, right?
The hits keep coming…
Posted: March 25, 2011 Filed under: breast cancer, cancer fatigue, infection | Tags: Benadryl, breast cancer, cancer battle, champagne, Cubicin, frustrated patient, infection, infectious disease, IV antibiotics, medical center, plastic surgeon, reconstruction, recovery, Vancomycin 18 Comments
I just got back from the infectious disease doctor’s office and wow, what a visit. What a day. There’s not enough champagne in the world to soothe this jangled mess of nerves. I don’t know where to start, so buckle up and bear with me.
It started with a phone call this morning from Rhonda from the infectious disease team’s office. She said hang tight, they weren’t going to start any new antibiotics until Wednesday when I have an office visit scheduled. I registered my discomfort with waiting 5 days, and hung up wondering what to do next about a 2nd opinion, when Dr Grimes called me back himself to explain.
It was a bit of a misunderstanding: he didn’t realize I was having symptoms in the newly created breast, which is the site of the original infection (the dreaded mycobacterium, which has waaaaaaaay overstayed its welcome). Once he realized we weren’t talking about a problem with the drain site from the belly incision, he got busy and ordered IV antibiotics and said come in today and start the first infusion in my office.
But first, I saw my plastic surgeon for my weekly post-op visit. He was in an effusively good mood, and entered the room smiling from ear to ear. He was at least 30 minutes late, and came in fully loaded: the first thing he said was, “I’m making up for the fact that last week you were late.”
Uh, yeah, I was 5 minutes late. I said as much, and he started to say something along the lines of it’s ok for him to be 6 times as late because he’s the doctor and I’m the lowly patient, but I cut him off and said, You are NOT that much more important than me, so zip it.
He did. I filled him in on the infection scenario and he had some things to say. He’s persnickety, and I love it. From his standpoint, things look good physically and he’s not super concerned about the new infection but was in agreement with Dr Spiegel that a visit to the ID docs was necessary. He said he wanted to talk to both Dr Spiegel and Dr Grimes today to make sure they’re all on the same page.
So off I went to the med center, again. The one time I don’t have any of my handlers present was, natch, the one time I needed them. More on that shortly.
Dr Grimes, who I adore for his problem-solving skills, rejiggered his schedule to see me so he could get the full story and examine me. Since they worked me in, I was in the secondary infusion room, which is little more than a broom closet. There are 2 recliners and 2 IV poles, a desk & computer and mini-fridge (which had nothing of interest in it, and yes I checked). There were 2 nurses in this tiny space and they and Dr G were stepping all over each other while I was comfy in my recliner. But without a beverage equal to the stress of my day. This room is so crowded that if both recliners were reclined, the people sitting in them (across from each other) would be tangled up. Oh, how I hate small spaces and crowded rooms.
Dr G needed to take a look at the original infection site, now home of the newly created right breast. The older of the 2 nurses, who is mid-50s and easily 100 lbs overweight, said, Oh aren’t you lucky to have gotten new boobs.
Screeeeeeeeeeeeeeeeeeeech.
That would be my patience coming to a grinding halt.
I said, yeah, that’s what everyone says, which sounds great, but they look like this: and I took off my shirt.
What I see as scar-ridden and jam-packed with misfortune and hardship and pain, medical professionals tend to see as pretty amazing. And yes, going from a completely flat, sunken, and concaved on the right side to two round and realistic breasts is pretty amazing. But I don’t want to hear the “yea, new boobs” line ever again.
The older nurse actually said, in front of Dr G, “Well, at least they’re perky. Mine haven’t been perky in a long time.”
Again, that sound you heard was my fuse erupting and the final straw shattering into a million pieces. I’d trade perky boobs for my old life in a heartbeat. One thing I’ve learned in all this mess: boobs are overrated. Especially the ones that try to kill ya.
I kept my composure, and so did Dr G, because I suppose she was trying to be positive, and Lord knows that’s a tall order in my situation. So, long story short, Dr G ordered yet another culture and said to get started with the infusion.
I’ve had vancomycin a lot. As in, in each of my hospitalizations, and at home. I’m tight with the vanco. Because I still have my port, it’s easy to administer the IV antibiotics, which is good because via IV is the only way to get vanco. It’s a wonder drug that in the past has worked for me, and worked fast.
Can you guess where this is going?
Because my body can’t do anything the easy way, or without complications, or absent drama these days, I had a reaction to the vanco. My old friend coursed through my bloodstream faster than it ever had in the past, and my body said, whoa, slow down this is creepy and we need to take things down a notch.
And by take things down a notch, I mean I started itching like crazy, felt like I had bugs crawling, in my hair, felt my skin burning, and my hands swelled up.
I’m not allergic to anything, and I’ve never been stung by a bee. Before breast cancer and infections entered my life, I had a pretty strong constitution and a cast-iron stomach. Now, however, I’m reduced to an itchy, burning, swollen, bug-infested mess.
I was about 40 minutes into the hour-long infusion at this point, so the nurses paged Dr G from his hospital rounds and he said finish the dose but administer some Benadryl and then start a second, replacement antibiotic, Cubicin. It’s new, similar to my old-friend-but-now-enemy vanco, and supposedly less likely to cause a reaction.
I need a lot more things like Cubicin in my life. The only drawback to it is that it takes about half an hour for the in-house pharmacist to mix up because it’s a giant molecule that takes a while to dissolve. So I had to wait. In the tiny little room. With both nurses, plus another patient who had joined us. He got hooked up to whatever drugs he needs (I tried to read the bag hanging from his IV pole but couldn’t), and promptly went to sleep. And snored through everything. Man, he looked peaceful.
The Benadryl made me kinda sleepy, but I only took half of what they offered because well, I knew it would make me sleepy, and I had driven myself there and had to get myself home. With my hands so swollen I literally couldn’t make a fist.
Luckily, the reaction didn’t progress beyond the itching, burning, swelling and buggyness, and the Cubicin infused without incident. Finally, something goes right today! And of course, now I know why they wanted the first infusion to take place in the office. Being the impatient old pro with home-health issues, I had lobbied to just run over to my oncologist’s office around the corner to have my port accessed, then have the antibiotic delivered to my house and get cracking. Luckily, Dr G is a lot smarter than I am.
So with the second drug infused safely, I was free to go but first had to go drop off the sample of the drain fluid at the lab. Now, “at the lab” at Methodist in the med center means in a different building and a long walk. Half outta my head on Benadryl and still swollen to the point of really wondering if I could get my credit card out of my sling bag to pay the valet, I left Dr G’s office.
With a good-sized box of drugs and supplies to haul with me.
Yep, they sent me home with a party favor: a box full of Cubicin, saline syringes and heparin flushes. I got to carry the box, and my lab specimen, across the Methodist campus.
Did I mention that this is the one appointment I attended unaccompanied? Rotten luck, that. Not only did I have to operate the giant sausages that were my fingers, I had to find my way with my Benadryl-addled brain limping along.
I went to the place I thought I was supposed to go, and tried to leave my lab specimen with a receptionist. She smiled broadly and did a fantastic job of disguising her disgust as I handed her a pee cup full of drain fluid. Kind soul that she is, she redirected me and sent me on my way to the lab, not the registration desk.
Trekked my way to the lab and found it with no wrong turns (hallelujah! this piece of junk day is turning around!) only to find that I was expected to fill out a form and list all the particulars of my insurance card. Which I did not have.
I explained as nicely as I could (which I admit, wasn’t very nice), that I’ve spent more than two weeks hospitalized in the Methodist system, both at the med center and in Sugar Land, and see no less than 4 doctors who are affiliated with said system, and if she can’t find me in the system then she could take the lab specimen and shove it.
Not really, at least not the “shove it” part but I was tempted. I told her I didn’t have my insurance card because I was still attached to my surgical drains and can’t carry my normal purse, blah blah blah. She said whatever, crazy lady; just fill out as much as you can and be gone.
And that’s exactly what I did.
And I managed to find my way back to the other building, to the valet. But on the way, as I was calculating the best way to make these giant fingers work to open my sling bag, I realized I didn’t have a valet ticket. The little blue slip that the valet always hands me in exchange for my wheels. Never got one.
Or did I? Just because I don’t have it doesn’t mean I never got it, and my mind was clicking along frantically trying to remember if I got the blue slip. I really didn’t think so, but clearly after the day I’ve had, I can’t be trusted and need adult supervision.
I remembered something odd about dropping my car with the valet: he asked how long I would be and if I wanted him to park it close. I said, probably 3 hours and I don’t care where you park it, whatever is easiest for you. That’s an odd thing because the valet usually doesn’t say much but hands over the blue slip. So I hauled myself and my box o’ goodies to the cashier to confess that I don’t have a ticket and was about to launch into a rousing speech of, I don’t care how much it costs to get my car out of hock, I just wanna go home and I wanna go now. I was a little worked up. Thankfully, the speech wasn’t necessary, and when I told the cashier my tale of woe, i.e., that I never got a ticket, she simply said, go on outside.
I guess sometimes the valets give ya a freebie. But then I’m left with the quandry of not exactly remembering which valet took my car without giving me a ticket, and not knowing for sure if he was giving me a freebie or if he forgot or I lost it or what. And the bigger question was: how do I let them know that I have no ticket, haven’t paid, but still need my car?
Again, I needed my handlers. In the worst way.
After a few minutes, the valet that I suspected was the one but I wasn’t 100 percent sure motioned to me and asked if I was ready for my car. Um, sure, yeah, that would be why I’m standing in the valet pick-up/loading zone area. He said navy Tahoe, right? I said yep, and he fetched my car, which sure enough he had parked close, as in right around the bend–not on the roof, or across the street, or wherever they usually park. He is officially my new favorite, and I’m very glad that when confronted with the choice between a single $1 bill and a $5 bill, I gave him the 5 for a tip. Still made out like a bandit since I didn’t have to pay for the parking at all. And it’s a small miracle that my over-inflated fingers were able to work at all, but thank goodness they did so that nice man could get his tip.
The ending to the whole saga came once I was in my car and on the road home, finally. Still a little itchy, really sleepy, way exhausted, fingers at least 5 times their normal size, but on the road home. The phone rang, and it was my plastic surgeon’s nurse, calling to tell me that he talked to Dr Spiegel and they both agreed that it was ok for me to go ahead and get the IV infusion from Dr Grimes.
Uh-oh. Were they expecting me to wait and get their permission or blessing on that? I had no idea. Good thing they were all on the same page.
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.
Update on the jerk
Posted: March 21, 2011 Filed under: breast cancer | Tags: Antibiotics, culture, Gram stain, infection, needle aspiration, pseudomona, Vancomycin 5 CommentsAmy says I need to post an update, and she’s always right, so here I am. Saw Dr Spiegel this a.m. and she’s not overly concerned with the fever, the firmness, the divot or the discomfort down my right side from the faulty drain. The right drain does indeed seem to be faulty, and she supports the unpopular (with me, anyway) opinion that the left drain is compensating for the right. Both drains are staying at least another week. Boo hiss. I wanted to start crying right then & there, but I’m way too proud for that.
She did culture the drain fluid and is looking for answers to my conundrum. She suspects a pseudomona and we hope to know for sure soon. She dug around on my new right breast A LOT (and I do mean dug, as in with a sharp object in hand), looking for fluid to collect and culture. No fluid to be found, even after she opened up the suture line AND tried to aspirate with a very long needle.
No fluid is good news but the very long needle was bad. I told the doc it would be a good day for a Xanax but I didn’t have one on me, not even in my “bag of tricks” as Amy calls it. No, since I’m still carting around these dumb drains, I have my little bitty sling bag for a purse instead of my real purse, which happens to be fully stocked. Grr.
Dr Spiegel suggested I pop into the office of Dr Grimes, my infectious disease guru, since he’s in the same building. He was at another hospital but we talked to his nurse Rhonda. She took a lot of notes and said she’ll get in touch with him and they will get back to me today sometime. Absent the pathology report, we’re in a holding pattern. Dr Spiegel and I talked about Vanocmycin, the wonder antibiotic that has worked so well on me in the past. Problem is, it needs to be administered via IV, either in the hospital or through home health, and Dr Spiegel doesn’t think that’s necessary just yet. She did suggest adding a vanco-like oral drug to my current antibiotics, but Dr Grimes’s nurse Rhonda didn’t think that was a good idea. She said it wouldn’t add more protection and would make me feel sick. Guess we need to wait and see what we’re dealing with.
So the good news is this: I didn’t get admitted to the hospital. The lack of fluid means the infection, if it’s there, hasn’t set up shop to the extent that it had last time. It’s possible that the pseudomona is preying on my already-fragile but on-the-mend body and causing some havoc with the drain sites but not revving up the original mycobacterium. Those are all good.
I’m also healed up really well, considering what a heinous surgery it was. So healed, in fact, that Dr Spiegel couldn’t pry the suture line apart (hence the big needle). She and Nurse Sonia both seemed unusually pleased at how well I’m healing. So why do I feel so crappy?
Milestones
Posted: March 15, 2011 Filed under: breast cancer | Tags: breast cancer, cancer battle, cancer diagnosis, Duke, girls' trip, hospital, infection, Lake Tahoe, Little League, mastectomy, milestones, recovery, Salisbury Beach, state baseball championship, stress, survivor, Tyler, wound vacuum 8 Comments
I just realized that Sunday was 10 months exactly since my mastectomy. And tomorrow will be 2 weeks exactly since reconstruction. I’m trying hard not to think about the fact that exactly 3 weeks after the mastectomy came the infection, which landed me back in the hospital just as I was getting my life back, and ended up costing me 23 days of incarceration (hospitalization); 3 vacations (Duke girls’ trip to Lake Tahoe, to Tyler for Payton’s All Star team’s state championship, and our annual visit to Boston and Salisbury Beach); 3 more surgeries; 10 days of twice-daily IV antibiotic infusions at home; and introduction to and hatred of Sucky, the wound vacuum. All in one summer. I’m sure that nasty infection cost me more that what’s listed, but those are the highlights.
I’m trying, really trying, not to think that a catastrophe is coming. I’m trying not to wait for the other shoe to drop, for the bottom to fall out, and the walls to cave in on this recovery. It’s a fragile peace. Very fragile.
Two mantras run through my head: It’s Temporary, and Don’t Borrow Trouble.
The first comes from Jenny, my survivor-sister mentor who has walked this walk, and then some. Her kids were 7, 5, and 1 year old when she was diagnosed, and like me, her case was anything but textbook. Hers was way worse than mine, and we veterans do like to compare and contrast. But she not only survived, she thrived, and she’s a shining example for me every single day. Now that I’m getting closer to being “done” with this “cancer journey” I appreciate her example even more, because she’s my tour guide for L.A.C.: Life After Cancer.
The second mantra comes from guest blogger and night nurse Amy Hoover, and along with her charging me $10 for being difficult, she reminds me to avoid looking for the bogeyman. Ignore him, assume he’s moved on. I suspect all survivors have a little bit of pessimism in them, no matter how chipper they seem. Yes, I’m glad to have been one of the lucky ones, who found it early and can bask in the security of single-digit recurrence rates. And yes, I do try to look on the bright side, count my blessings, and walk on the sunny side of the street (as my mama used to say). In general, my side is blindingly bright, my blessings are innumerable, and I need SPF 70 for the powerful rays on my side of the street. But the thoughts are still there. Sometimes.
Sometimes thoughts of “what if?” fight their way to the surface and take giant gulps of pessimistic-filled air. Those gulps sustain those thoughts as they traverse my grey matter and circumvent the rational side of my brain that tells them to hush up, quiet down, and go away. The rational side of my brain fusses at those thoughts to beat it, get outta town, and quit plaguing me with doubt, worry, and fear. And usually, it works.
But sometimes, instead of celebrating the milestones and thinking about how far I’ve come, those thoughts prevail. Instead of holding my head high even though my back still isn’t completely straight from the giant incision on my belly, I cower a little. Just a little, because I absolutely despise cowering. But sometimes my irrational brain takes over and reminds me that there are no guarantees in life, and there certainly is no travel insurance on this “cancer journey.” I’m the poster child, after all, for doing everything right lifestyle-wise yet still being crapped upon by the giant cancer bird in the sky.
You know me, though, and I’m not about to let some giant bird or some niggling thoughts stop me from living my life. And living it out loud. Today I will celebrate being a 10-month survivor.
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.
1 week ago today…
Posted: March 9, 2011 Filed under: breast cancer, drugs, food, infection, Surgery | Tags: breast cancer, cancer battle, DIEP, hospital, Houston, ICU, infection, margaritas, mastectomy, Methodist Hospital, microsurgery, morphine, new boobs, plastic surgery, reconstruction, recovery, surgery, Texas, Texas Medical Center, Vera Bradley 11 CommentsI 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:
She loved the polka dots and said she’d like to have that car, then she saw the back and said forget it. Fickle.
Yesterday on the way home from the med center, I saw this:
and had to snap a picture. Yes, it is a zebra car, complete with a long tail. Gotta love the big city.
Pedey, aka Weasel Dog
Posted: February 24, 2011 Filed under: breast cancer, kids, pets | Tags: adoption, breast cancer, cancer battle, cancer diagnosis, Dana Jennings, dogs, family, hospital, infection, kids, mastectomy, New York Times, Petsmart, puppies 15 Comments
It’s been brought to my attention that I have written about Harry and Cinco the leopard gecko, but not Pedey, the other canine member of our household. Well, excuuuuuuse me.
Pedey, oh Pedey. I don’t even know where to start.
He’s a cutie, for sure. We weren’t planning on getting a puppy, not really. Not that day, anyway. IMHO, any day is a good day to bring home a new puppy, but not everyone subscribes to that point of view, so you gotta tread lightly.
Flashback to May 3, 2008. It was Payton’s 9th birthday. I went to Petsmart to pick up something for Harry and the Houston Humane Society was there with the mobile adoptions. I figured I’d scritch a few pups, get a dose of puppy breath, tickle a few fat bellies, and move on. Then I saw this: 
Oh. My. Gosh. I was smitten. That face! Those floppy ears! The speckled feet! The fat belly! The little white blaze down his nose! 
Did I mention that it was Payton’s actual birthday? 
And that I now really, really, really wanted a puppy?
And that I really, really, really wanted this puppy?
Long story short, Payton fell in love with Pedey (his mama taught him well), and we had to have him. Trevor, being the good sport that he always is, gave in, even though we already had one dog too many for him. Payton and I reasoned that Harry needed a dog, and since it was almost summer, the kids could help take care of this puppy.
Welcome to the family, little guy.
I think you’re going to like it here. We have a mentor for you named Harry. He’ll show you the ropes. He makes the mean face sometimes, especially when he has a chewie, but just ignore him.
We’ve got a best friend lined up already (Snoopy), a pool should you become a water dog, lots of toys & treats, and unlimited belly rubs.
It took us a while to come up with the right name for the new guy.
Since he was officially Payton’s dog, Payton got to have the final say. And he decided on Pedey, after his favorite Red Sox player, Dustin Pedroia. The dog is nothing like his namesake: he’s cowardly, lazy, and clumsy with a ball. But the name stuck.
He settled right into our life and weaseled his way into my heart. Let me state for the record that I’ve never had a small dog, and I’ll admit, I’ve never quite understood the appeal. Now before you carry-dog lovers out there go ballistic and send me death threats, let me be clear: I don’t dislike carry dogs or their owners. I’ve just never understood the benefits. 
Now I get it.
He was of course the cutest puppy ever. (I can say that because Maddy, the best dog in the universe, has gone on to her Great Reward, and because we adopted Harry at age 2 and never knew him as a puppy.)
He likes to snuggle more than rough-house. He would rather sleep than do just about anything else (preferably in my lap). 
We call him The King of Comfort, because he always manages to find the most comfy spot available. 



If he’s not fast asleep in a prime spot, he’s camped out under my desk chair. 
Sometimes his legs or tail peek out from underneath the chair, and sometimes he’s completely hidden and I forget he’s there until I scooch the chair back and accidentally scare him half to death.
Sometimes he gets in the chair, right behind me. When he was tiny, it worked out just fine. But now he’s a little too big for that, but he still tries it sometimes. 
He still manages to fit. Mostly.
He likes to make a nest when he finds a comfy spot for sleeping. He will either wedge himself tight in between pillows & cushions, or get himself wrapped up in blankets & comforters. He will also stay in bed until he’s good and ready to get up, instead of leaping up the instant my feet hit the floor, like Harry does.
We don’t know what kind of dog he is, besides lazy & shiftless. Beagle, maybe? He has short, coarse hair; very different from the labs’ hair I’m used to. He has a very wrinkly brow and often looks quite contemplative. It’s mostly for show, though, because he sure doesn’t seem very smart. 
He’s not all that well-trained, either, because he was so cute we were always holding him instead of schooling him to sit and stay. 
He never did learn to love to swim, like the other dogs do. He doesn’t really even like for his feet to get wet, hence the need to be in my lap as often as possible.
Dana Jennings, a wonderful writer for the New York Times said, “Good dogs – and most dogs are good dogs – are canine candles that briefly blaze and shine, illuminating our lives.” I’ve had 4 dogs in my adult life: Maddy, the best dog ever in the history of all dogs. So good, I still get teary when I think of her, several years after her death (and y’all know I’m not much of a crier). So good that the urn of her ashes is on a side table in my bedroom, her name engraved in a simple, beautiful script, the urn way too small to contain all the love and memories she provided. Then there was Lucy, who we got to keep Maddy company. Her canine candle was pretty dim, and there is no urn for her. Then came Harry, and now Pedey. A short but very full doggie history.
Pedey was so happy this past summer, when I was convalescing from surgery and multiple hospitalizations. I don’t usually lay around much, but I had to then. And he loved it. He was always right by my side or in my lap, sleeping away. We joked that we should have snuck him into the hospital, so he could have slept on my bed with me there.
Well, Pedey, rest up; in a few days, I’ll have some more down-time. Are you ready?





