THE DRAINS ARE GONE!!!
I can’t even begin to express how happy I am about that. I didn’t have to beg or plead, which is even sweeter. Being drain-free for the first time in 4 weeks is so fantastic that I barely noticed how “slooshy” the right one felt coming out. I was forewarned: Dr Spiegel told me that it was in deep, and when she snipped the stitches away and pulled to free it from the depths of my belly, I felt it slurping around like a sea monster quite a distance from its entry point.
No matter, it’s out now, and that was exactly what I had hoped for. Isn’t it nice when things work out that way? Amy had prepped me before we went into the exam room, telling me in her infinite wisdom not to expect to get them removed, so that if it happens it’s a bonus, but if it doesn’t I’m prepared. As usual, she was right.
Nothing like a glass of cava in the middle of the day. Except maybe a gigantic celebration, which is what we were having. No more drains makes me a very happy girl. To quote Adam Levine, one of my all-time favorite musicians.”If I never see your face again, I won’t mind.” My sentiments exactly.
Houston’s house-made smoked salmon with toast points and herbed mayo. Only the restaurant isn’t called Houston’s anymore, it’s Hilltop of Hillmont or Hill-something, but the food is still out-of-this world, and I liked the glass the cava came in so much that I had to have it. It has 3 little bees on it, and I like them. In many cultures, bees are symbolic of hope, tireless pursuit, and the sweetness in life. My new glass and its 3 little bees stand for all of those things, and which certainly have been plentiful this last month. Gonna go fill it up right now with some Piper.
Some days I want to open up my skull, scoop out my brain, cradle it lovingly & pat it reassuringly and tell it there, there, one day this bad stuff will be behind us and everything will get back to normal. Those who’ve walked this “cancer journey” before tell me that this will happen. Other days, I want to open up my skull, scoop out my brain, and kick it across the room, saying, is this the best you can do? Can you at least try and keep up here?
Today is a kick-it-across-the-room kind of day, and it’s early. It’s still dark outside, for cryin’ out loud. My brain should still be sleeping and recharging so it’s ready to face the day. Instead, it woke up–and woke me up, too–several times last night, disrupting my Ambien-induced slumber. Stupid brain. Doesn’t it know that sleep is the one guaranteed relief from the cancer-laden thoughts that course through my head? Unless I’m dreaming about cancer-related stuff, that is, and that too I blame on my idiot brain. How come those dreams are never good? Where are the unicorns and fields of four-leaf clovers? Where are the feel-good scenes that bathe my brain in serotonin, ensuring that when we wake up, we do so with a big smile and feel like we’ve had a nice hug. Where’s Charles Schultz when I need him?
Now I can’t remember what this post was about. Stupid brain.
Today will be a long day. In addition to the choppy slumber and frustrating half-thoughts, I have 3, count ’em, 3 doctor’s appointments today. That’s about 3 too many for me.
First up is Dr Grimes, infectious disease guru, to hopefully shed some light on the MRSA part of the infection puzzle. I’m expecting to get culture results from my visit to him last week, and he will order blood work as well today, to seek more answers to the great infection questions that seem unending.
Then it’s off to Dr Spiegel to get down on my knees and beg her to please please please pull these damn drains. Today is 4 weeks, people. Four long weeks of being tethered. She’s not easily swayed, so my visit to her may end in tears. Or shouting. Or both.
But, wait — I have my appointment with Dr S to round out the day! That ought to be good. He always has something interesting to say about my pitiful situation. Half the time I don’t have the foggiest idea what he’s talking about, but it’s always interesting.
I saw this t-shirt and wondered why in the world I don’t own it. This may well be the single best piece of advice. Ever. “Don’t Annoy the Crazy Person.” Brilliant. Talk about a public service ad. This is a message to humanity. Wonder if I can get community service hours for providing this message.
I should have purchased this shirt a long time ago, but now that cancer has came to town and invited along not one but two unseemly infections, I could really use it. I might just wear it every day.
I certainly would wear it any time I ventured out in public, to deal with the hoi polloi. Seems you can’t swing a cat without bumping into someone who’s going to do or say something annoying. (No, I’m not really going around swinging cats, so settle down already.)
The latest annoyance is this: drugs that come individually wrapped in impossible to open blister packs. Yes, I’m well aware that overdosing on iron supplements can be fatal, but my kids are long past the stage of putting any- and everything in their mouths, and frankly, the sheer volume of prescription drugs perching on the countertops in my kitchen and bathroom render such toddler temptations trite, banal and just part of the landscape on which my kiddies exist. I have zero fear of them getting into any of my drugs. As for myself, if I were looking to overdose, it would not be on iron supplements. Just sayin’.
Notice the peeling and scraping and pressing of the layers of paper in an effort to get the pills out of the packaging?
I was doing pretty well with it for the first 3 or 4 pills. I started out by following the directions, bend at the perforation, then grasp the corner that is ever so slightly raised and pull to unpeel the first layer.
But that was taking a long time and was not nearly as satisfying as the application of brute force to pierce and punch the layers apart. I used some tools, which always feels good. Started out with a nail file but graduated to this:
I didn’t even break into the toolbox in the garage; that’s just what I had on my desk in the mug that says “I’d rather be drinking tequila,” which has been on my desk for more than a decade. When I used to work for a living in an office, I had this mug on my desk, and now it’s in my “home office” where I don’t do any real work.
And yes, I keep a small knife and hammer in my tequila mug on my desk. You never know when you may need such tools.
But I am also ready in an instant to dump the tools from the mug to fill it with tequila. I’m pretty flexible that way.
Back to the iron supplements. My oncologist prescribed them because my red blood count was low after the post-mastectomy infection and subsequent tissue excision this summer. At least, that’s the reason I think the hemoglobin is low. Mr Smarty-Pants onco thinks it’s because I don’t eat meat. He’s a big carnivore himself and doesn’t understand why someone would willingly forego the wonders of the meat world. Whatev. Point is, he says I need it so I take it. That is, when I can get it out of the *&%$ blister packs.
So I started thinking about the “Don’t Annoy the Crazy Person” t-shirt, and had a quick look-see on the web to see where to get it. This is what passes for online shopping while I’m under house arrest and have loads of time to fill. Yes, I could be checking out the hot new looks for spring at nordstrom.com or any number of websites, but instead, I’m looking for t-shirts for crazy people.
That makes perfect sense.
If you’re a crazy person.
I’m not quite sure what it is, but the cracked glass implies that something bad either happened or is about to happen. Things can unravel at a moment’s notice when dealing with the crazies.
There’s a bumper sticker, in case you need to warn people while on the road. That sounds like a good plan. I like to know which cars contain the seriously crazy people. In a town like Houston, which always ranks in the top 10 nationwide for bad traffic, it’s a really good plan. An article in the Chicago Tribune ranked Houston #5 in the worst cities for traffic, saying that 22 hours a week are spend in congestion; the average speed while congested is 13.2 mph; and the heaviest traffic is Thursdays at 5 pm. Interesting. I’m really glad I don’t have to face a rush-hour commute every day. Although I don’t do it while I have kids in the car, I like to drive as fast as I can everywhere I go, so 13.2 mph would seriously hinder that. I’d also be a good candidate for road rage. I have a lot of angst these days. If you see a navy Tahoe hauling A down the road, gimme a wide berth, ok? I don’t have the bumper sticker announcing myself as a member of the crazy tribe (yet), so look for the Red Sox license plate frame and tow hitch as I fly by.
If you’re not ready to commit to a bumper sticker maybe you’d prefer to have your dog do your talking for you. If so, get this:
It’s made in the USA, after all. I can see Pedey wearing his proudly. Except no one would ever see it, since he spends 99 percent of his life sitting in my lap. Lord knows that Lazybones doesn’t venture outside to see & be seen; too tiring.
I’m guessing the doggie t-shirt doesn’t come in Harry’s size. Although the crazy label does indeed apply to him. If we did find one big enough and get it on him, he’d throw his back out trying to wrestle it off his body, then knock out a tooth ripping the fabric to shreds. Sweet boy.
You can also get a button, to warn people off:
I especially like the woman chasing the man with the knife, and the Edward Gorey-type illustration. Classy.
There’s also a handy card available, presumably to hand out while swinging cats at the hoi polloi. That’s convenient. Wonder what the minimum order is on that?
I was just looking at some info online about Cubicin, my poorly named but hopefully awesome new antibiotic. The heading of the website caught my eye: When you suspect MRSA cSSSI or bactermia—use CUBICIN first!
Well, in my usual headstrong style, I did not use Cubicin first. I like to rebel that way. It’s not much, but it’s all I’ve got these days.
But now I am on Cubicin, because we not only suspect MRSA, we know it, and I’m back to playing by the rules and toeing the line. For now, anyway.
I’ve learned some things. That’s one thing I will say about this “cancer journey” — the education never stops. Just when I think I’ve got it all figured out and have “been there, done that” something new pops up and presents a whole new learning curve.
If someone had asked me last year if I could see myself administering IV drugs to myself at home, I’d have said nope, you’re whacked, there’s no way that’s happening.
And yet, here I am, administering IV drugs to myself at home.
If someone had asked me last year if I could envision a breast cancer diagnosis, a bilateral mastectomy, nearly a month in the hospital, and not one but two teams of infectious disease doctors working to keep a wily infection and its friend MRSA at bay, I would have asked what they’ve been smoking.
Yet here I am, looking at that very scenario.
Life is funny that way. And by funny I mean peculiar, because let’s be honest: there’s nothing funny about any of the things I just listed.
AstraZeneca markets this drug in the US. I’m not sure if Cubicin is the US name for the drug, but whoever named it must have been having an off day. It’s in the daptomycin family, which means precious little except that it adds another notch to my belt. If I were to list all the different antibiotics I’ve been on since May of last year, this post would stretch on and on. Suffice to say I’ve had just about all of them, from Azithromycin to Zyvox, in this long and winding road.
One thing on Cubicin’s website made me laugh: “CUBICIN (daptomycin) is indicated for complicated skin and skin structure infections (CCSI).” Yep, this is complicated all right. I don’t seem to know how to do this any other way. My friend Laura, the transplant nurse, laughs and says, “Nothing about your case has been textbook, my friend.” True, so true.
Cubicin’s website lists the requisite claims of awesomeness along with limitations and warnings. It’s not indicated to treat pneumonia, if you were wondering, nor is it effective for the treatment of left-sided infective endocarditis due to S. aureus. I’m not exactly sure what that ailment is, but I’m sure glad I don’t have it. I do, however, have a problem with the website’s use of “due to” in that construction. Any monkey knows it should be “because of” as “due to” is a temporal phrase to denote time or expectation, not causation. Man, it bugs me when they get that one wrong.
While poorly named and with a glaring grammatical error on its website, Cubicin does have a lot going for it. Namely, the list of side effects is miraculously short. I’ve become well-versed in side effects of multiple drugs (again, part of the education I never knew I’d be getting and really would be just fine not ever receiving).
The worst side effects seem to be anaphylaxis and pneumonia, but other than that, we’re looking at muscle weakness (great, since I can’t exercise anyway why not speed up the atrophy?), peripheral neuropathy, and diarrhea. So if I don’t have an allergic reaction and get pneumonia from this drug, I’ll have weak muscles, some numbness, and be in the bathroom a lot.
That’s a very short list.
There are two things about this drug that are fantastic. Well, three things if you count the very short list of potential side effects.
It is administered once a day, not twice, and it doesn’t require an IV pole from which to hang. This means I’m tethered (literally) to it half as often and while tethered, have complete mobility. Last time I had IV drugs at home, they hung from a pole and I was forever getting tangled up as I tried to move from room to room with them.
I can forgive the less-than-exciting name for Cubicin.
Some of you have asked how this all works, so I’ll tell you. I’ve always wanted to answer viewer mail like David Letterman used to do (maybe he still does, but I don’t stay up late enough to watch him.). Here’s the deal: I have a needle in my port-a-cath that stays in for the duration of the IV therapy. If IV therapy lasts longer than 7 days, the nurses have to change the needle, so they yank it out and re-puncture me with a fresh one.
Not that I’m complaining, but the needle is rather fat, as it has to pierce not just my skin but also the plastic membrane of the top of the port. They call it a butterfly needle, but let me tell you, there’s nothing gentle or fleeting about it. I’ve had my port poked many, many times during this “cancer journey” and in fact, when it’s not in use, it must be flushed every 6 weeks, so off I go to the oncologist’s office to have the infusion nurses prep me like a HAZ-MAT victim, jab the butterfly through my skin, flush everything then yank the needle and patch me up with gauze and tape.
While I don’t mind going to Dr Darcourt’s office for port maintenance (it’s close, parking’s free, and he’s cute), I now understand why Dr Grimes wanted me to come to his office to get started on this round of IV drugs. That said, I will continue to assert that Dr Darcourt’s infusion nurses are better with the stick. Dr Grimes’s infusion nurse, she of the “oh, at least you get new boobs” comment, has a bit of the palsy and visibly shakes. So Shakey comes at me with the butterfly needle, and all I can think is please please please let her get it on the first try, and where is that cocktail waitress, anyway??
Ok, back to business. The port looks like this, but of course it’s under my skin. The thick white tube on the right is sewn into my jugular vein, and the purple part on the left lies just under my skin on the left side under my collarbone. And yes, you did read that right: the port’s tubing is sewn into the jugular vein. That’s how it can empty all the various drugs and dyes into the big gun for distribution throughout my body. When you’ve got an important distribution job to do, the jugular is your guy. Creepy, yes, but very effective and efficient.
So the port is under the skin tied into the jugular, the needle pierces both skin and port membrane, and a thin tubing is attached to the needle with a clamp and a connector cap that attaches to the bag of medicine. It’s maybe 8 inches long, and when I’m not using it, I tuck it in my shirt and go on about my day.
Much more complicated. I prefer the current version; downsizing is good.
The round balls in the new supplies photo are the “bags” of Cubicin, and I have saline syringes and heparin flushes. Gotta flush the port with saline before and after the drug infuses, to keep everything flowing, then shoot in the heparin after the infusion, to prevent any blood clots in the port’s nooks & crannies or in the tubing or God forbid in my body. The heparin is considered a lock, to keep the clots out.
I can hold it in the palm of my hand while it’s attached to my tubing and while it flows into my veins. I can set it in my lap and read my book, or take it with me to drive carpool. If I didn’t still have the dreaded JP drains and were carrying my normal purse instead of the sling bag, I could stick it in my purse and tuck the thin tubing aside and go shopping. Sigh. That’s another life. Never mind.
This drug infuses in half an hour. Once a day. I think I’m in love. Last time I did vancomycin and cefapim via IV, it took nearly 4 hours to infuse twice a day, and I was stuck with the IV pole. This is way better, despite the utter lack of shopping.
As it infuses, the bag starts to collapse and the rod on the inside becomes more prominent. One of the infectious disease nurses said that while the drug is plentiful, the rod looks pregnant, and as the drug depletes, the rod gets its figure back. Too bad the figure-reclaiming doesn’t work that fast in real life.
If you’re wondering how this little bag of wonders works without gravity (i.e., hanging from a pole), I can tell you: it’s pressure-driven. Ingenious. It also has a filter on the tubing that prevents any air bubbles from traveling through the tubing and entering my bloodstream. Last time around, we were warned against air bubbles as if they were the devil incarnate, and I stared at the drugs coursing through the tubing, waiting for my heart to explode, and not from happiness.
One day, when this “cancer journey” is finally over (it will end one day, right? right??), I can envision my heart being so filled with happiness that it might explode. One day.
After 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.
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?