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 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.
Was 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.