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.
Good Lord in Heaven, I think my dog Harry can read.
I think he read my post about his thieving ways (see “Thank goodness for tile” under recent posts; the link isn’t working so you’re gonna have to find it yourself). While I was busy carrying in my loot from Costco, he snatched a pound of sliced Swiss cheese and horked it down.
Damn that dog to hell.
It’s too cold to keep him outside, and I am a bit of a sucker for his big brown eyes imploring me through the window to let his sorry butt inside. But it’s that sorry butt I’m worried about after a pound of cheese passes through it.
If he makes another mess in the house, I’m shipping him off to the glue factory.
You’d think that having a friend going through the worst thing you’ve ever faced would be a comfort. And it is, kind of. It’s also really hard and really sucky, because as great as it is to know that she truly gets what I’m feeling, it means that she’s probably feeling it too, because she’s in the trenches herself.
Does that even make sense?
It does to me, but if you’re having trouble following along, bear with me. My friend in the trenches is staring this vicious beast in the eye, going toe-to-toe with the roughest part of the “cancer journey.” (I really hate how that phrase conjures up a nature walk or space travel or anything other than what it is, which is hell. For lack of a better phrase, I’ll continue to use “cancer journey,” but I insist on taking away some of its power by using quotation marks.)
She and I had a great day together yesterday. I took her to her appointment with Dr S., which is always fun for me because I’m not the one sitting on his exam table. She was getting her tissue expanders filled, and I’m going to risk embarrassing her a little here by saying that girl is starting to become stacked (yes, I’m envious, but so so so happy for her at the same time). I also had gotten my tissue expanders filled a few times this past summer, before the *&$% hit the fan and “mycobacterium” became part of my lexicon, so I knew what to expect from the procedure.
What I didn’t expect was to get to be Dr S’s assistant. Nurse Nancy in the house! Dr S’s lovely nurse Brenda was on vacation, so Dr S told me to glove up and earn my keep. I couldn’t resist asking him if the gloves were latex-free, even though I don’t have a latex allergy. It’s not much, but it’s all part of how I drive him batty.
I’ve witnessed him bossing Brenda around plenty, and it was funny to be on the receiving end of that. We were in the midst of a heated discussion about something or other, and he started ordering me around right away. I reminded him that it’s nice to be important, but it’s important to be nice. He loved that one. Really. My poor sweet friend asked us to stop fighting and please talk about something sweet, like puppies or Easter bunnies, since Dr S was waving a giant needle around as she lay helpless in his wake.
He told me to hold the bag of saline a certain way, so he could jam the giant needle into it and fill up the king-size syringe to then insert into her tissue expanders and fill them up, and I couldn’t resist doing it the wrong way, just to tweak him. Then I realized he was pointing the giant needle at me, coming toward the saline bag, so I decided to shape up. It’s all good fun.
Before we made it into the exam room, she and I waited quite a while in the waiting area (I sure hope this isn’t becoming a trend with Dr S, because I hate to be kept waiting). We were chatting and laughing, and an older lady was watching us. She finally interrupted our conversation to tell me she liked my boots, and to ask if she’d seen me in Dr Darcourt’s office earlier that week. She and I apparently have the same oncologist and plastic surgeon. Small world! She asked my friend and I where we both are in the reconstruction phase, and we compared notes as girls in our situation tend to do.
This sweet lady shared that Dr S had done the TRAM-flap procedure on her 5 weeks ago. I said, hmmm, that’s the procedure he thinks he wants to do on me and I’d love to talk to you about that. Good grief, did that open the gates to a gush-fest on how wonderful Dr S is. This lady and her husband both couldn’t say enough nice things about him. If they said it once, they said it 100 times: “He’s not a surgeon, he’s an artist.”
That’s sure nice to hear. I’ve heard it before, actually, from lots of different people. But it’s still nice to hear. Especially just before my friend and I got called back into the exam room for her turn. It made me give him a little bit of extra grief, just because I know he’s so full of himself. And because I know it makes him nervous to know that I’m talking to his other patients. He’s asked me not to mention the whole infection thing, just in case that unfortunate event is associated with him. Easy enough, as I’d like to forget it ever happened. And easy enough because never in a million lifetimes would I ever believe that it was his fault. I’ve said before and will say again, repeatedly, that man drives me crazy but he took good care of me. The problem is that when someone asks why I haven’t started moving forward on reconstruction, as this sweet lady did, it’s kinda hard to answer honestly. I can always lie and say I’m a big chicken who can’t face another surgery, or I’m indecisive and can’t figure out which option to choose. But neither of those are nearly as compelling a story.
After we concluded our business with Dr S, we ran a couple of errands before meeting some other friends for lunch. And by “ran a couple of errands” of course I mean shopping. We were on a mission to find her a new pair of black boots and I’m proud to say that we found not only the boots but also two other pairs of shoes. I’ve written before about the healing power of new shoes. It’s a force unto itself. She and I both really believe in the power of great shoes. The rest of our worlds may be a crumbly mess, but we’re gonna face it in great shoes.
We spent a lot of time laughing so hard we hurt, and more than one person stopped to look at us and probably wonder what in the world could be so funny. She’s not the sort of person who snorts when she laughs real hard, but I am, and I did it a few times. That’s how you know you’re really laughing. I’ll bet that to the outside world, we look like two normal women: hanging out, enjoying each other’s company and relentlessly pursuing the perfect pair of black riding boots. Probably no one notices that we both have a port bulging out from under our skin, or that we have a much different profile than we used to. I know that no one can see the scars under our shirts, and the newly-etched worry lines on our faces could be from any number of stresses. No one knows that the landscape of our daily lives has a completely different topography now. Instead of just being filled with carpool and tennis and such, it now revolves around doctor appointments, procedures, and research. When we’re out in public, running our errands and getting stuff done, we look like normal people. We get through our days, cross things off our “to do” lists, and take care of our families, just like everyone else. But we do it with a heavy burden. That’s why it was so great to spend the day together, and to ease each other’s burden, if only for an afternoon.