When you suspect MRSA…

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.

Moving on.

While poorly named and with a glaring grammatical error on its website, Cubicin does have a lot going for it. Namely, the list of side effects is miraculously short. I’ve become well-versed in side effects of multiple drugs (again, part of the education I never knew I’d be getting and really would be just fine not ever receiving).

The worst side effects seem to be anaphylaxis and pneumonia, but other than that, we’re looking at muscle weakness (great, since I can’t exercise anyway why not speed up the atrophy?), peripheral neuropathy, and diarrhea. So if I don’t have an allergic reaction and get pneumonia from this drug, I’ll have weak muscles, some numbness, and be in the bathroom a lot.

That’s a very short list.

There are two things about this drug that are fantastic. Well, three things if you count the very short list of potential side effects.

It is administered once a day, not twice, and it doesn’t require an IV pole from which to hang. This means I’m tethered (literally) to it half as often and while tethered, have complete mobility. Last time I had IV drugs at home, they hung from a pole and I was forever getting tangled up as I tried to move from room to room with them.

I can forgive the less-than-exciting name for Cubicin.

Some of you have asked how this all works, so I’ll tell you. I’ve always wanted to answer viewer mail like David Letterman used to do (maybe he still does, but I don’t stay up late enough to watch him.). Here’s the deal: I have a needle in my port-a-cath that stays in for the duration of the IV therapy. If IV therapy lasts longer than 7 days, the nurses have to change the needle, so they yank it out and re-puncture me with a fresh one.

Not that I’m complaining, but the needle is rather fat, as it has to pierce not just my skin but also the plastic membrane of the top of the port. They call it a butterfly needle, but let me tell you, there’s nothing gentle or fleeting about it. I’ve had my port poked many, many times during this “cancer journey” and in fact, when it’s not in use, it must be flushed every 6 weeks, so off I go to the oncologist’s office to have the infusion nurses prep me like a HAZ-MAT victim, jab the butterfly through my skin, flush everything then yank the needle and patch me up with gauze and tape.

While I don’t mind going to Dr Darcourt’s office for port maintenance (it’s close, parking’s free, and he’s cute), I now understand why Dr Grimes wanted me to come to his office to get started on this round of IV drugs. That said, I will continue to assert that Dr Darcourt’s infusion nurses are better with the stick. Dr Grimes’s infusion nurse, she of the “oh, at least you get new boobs” comment, has a bit of the palsy and visibly shakes. So Shakey comes at me with the butterfly needle, and all I can think is please please please let her get it on the first try, and where is that cocktail waitress, anyway??

Ok, back to business. The port looks like this, but of course it’s under my skin. The thick white tube on the right is sewn into my jugular vein, and the purple part on the left lies just under my skin on the left side under my collarbone. And yes, you did read that right: the port’s tubing is sewn into the jugular vein. That’s how it can empty all the various drugs and dyes into the big gun for distribution throughout my body. When you’ve got an important distribution job to do, the jugular is your guy. Creepy, yes, but very effective and efficient.

So the port is under the skin tied into the jugular, the needle pierces both skin and port membrane, and a thin tubing is attached to the needle with a clamp and a connector cap that attaches to the bag of medicine. It’s maybe 8 inches long, and when I’m not using it, I tuck it in my shirt and go on about my day.

My supplies look like this:

Flashback to this past summer, when I had the first round of IV antibiotics at home. The supplies looked like this:

Much more complicated. I prefer the current version; downsizing is good.

The round balls in the new supplies photo are the “bags” of Cubicin, and I have saline syringes and heparin flushes. Gotta flush the port with saline before and after the drug infuses, to keep everything flowing, then shoot in the heparin after the infusion, to prevent any blood clots in the port’s nooks & crannies or in the tubing or God forbid in my body. The heparin is considered a lock, to keep the clots out.

Here’s the “bag” of Cubicin as it starts infusing. It’s chubby and round with a rod down the middle that helps indicate when the drug is all gone.

I can hold it in the palm of my hand while it’s attached to my tubing and while it flows into my veins. I can set it in my lap and read my book, or take it with me to drive carpool. If I didn’t still have the dreaded JP drains and were carrying my normal purse instead of the sling bag, I could stick it in my purse and tuck the thin tubing aside and go shopping. Sigh. That’s another life. Never mind.

This drug infuses in half an hour. Once a day. I think I’m in love. Last time I did vancomycin and cefapim via IV, it took nearly 4 hours to infuse twice a day, and I was stuck with the IV pole. This is way better, despite the utter lack of shopping. 

As it infuses, the bag starts to collapse and the rod on the inside becomes more prominent. One of the infectious disease nurses said that while the drug is plentiful, the rod looks pregnant, and as the drug depletes, the rod gets its figure back. Too bad the figure-reclaiming doesn’t work that fast in real life.

If you’re wondering how this little bag of wonders works without gravity (i.e., hanging from a pole), I can tell you: it’s pressure-driven. Ingenious. It also has a filter on the tubing that prevents any air bubbles from traveling through the tubing and entering my bloodstream. Last time around, we were warned against air bubbles as if they were the devil incarnate, and I stared at the drugs coursing through the tubing, waiting for my heart to explode, and not from happiness.

One day, when this “cancer journey” is finally over (it will end one day, right? right??), I can envision my heart being so filled with happiness that it might explode. One day.


Another day, another antibiotic

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.

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…

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.