2 small heart attacks
Posted: April 14, 2011 Filed under: breast cancer, kids | Tags: AA Milne, baseball, breast cancer, cancer battle, ee cummings, grief, i carry your heart, kids and cancer, missing mom, parenting, poetry, stress, survivor, Winnie the Pooh 3 CommentsThe viewer mail is pouring in about this post and this one, in which I inadvertently gave y’all some reason to think you might be suffering a small heart attack. Many apologies. I didn’t mean to scare anyone or cause anyone to stroke out. I promise to be much more boring and much less dramatic in future.
Yeah, right.
I will get to coverage of Day 2 in Napa, really I will. It’s in the works. The trip was so fantastic, I want to do it justice, and sometimes that means ruminating, and you know I have very little patience.
As Winnie the Pooh referred to himself as “a bear of very little brain,” I am the blogger of very little patience. Working on it, people, working on it.
Thinking about Winnie the Pooh reminded me of how much I loved that bear as a little girl, and I’m sure somewhere in the deep recesses of my parents’ attic, there are photos of me surrounded by Winnie; my sweet mama never threw anything away. I had the Pooh treehouse with all the little figures: Pooh, Piglet, Rabbit, Christopher Robin, Kanga, and Roo. Oh, and Tigger. Don’t forget him. He’s c-razy! I had some Pooh pajamas that I wore nonstop, although not out in public like my little girl does in her jammies. I had a stuffed pooh, the original AA Milne version before Disney got its hands on him, and that bear went everywhere with me. I loved him so much I even gave him open heart surgery with my mom’s seam ripper from her sewing kit. I must have left the closing to my surgical assistant, because Pooh had a hole in his chest for the rest of time.
Now that I’m all grown up, I appreciate Winnie the Pooh on a whole ‘nother level, and find the depth and meaning contained in his quotes so moving.
We’ve all seen this one, on a greeting card perhaps or a t-shirt: ““If you live to be 100, I hope I live to be 100 minus 1 day, so I never have to live without you.” So endearing when said by a cartoon bear, but if a human said that I’d want to barf. Those of you who know what a non-romantic I am will be shaking your heads right now. Go ahead, it’s all right.
This quote from Pooh’s endless wisdom does not make me want to barf, however:
This one is all right with me. Don’t know why, but I suspect it’s because it reminds me of my sweet mama, and how very much I miss her. It also reminds me of my favorite ee cummings poem “i carry your heart with me,” which I had planned to read at my mom’s funeral but I just couldn’t get the words out. The words are always in my head, though, and I especially like this part:
“i carry your heart with me (i carry it in my heart) i am never without it… you are whatever a moon has always meant and whatever a sun will always sing is you here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide)and this is the wonder that’s keeping the stars apart i carry your heart (i carry it in my heart)”
Having cancer sucks, but having cancer while you still have young kids at home really sucks. There’s the day-to-day junk that still needs to be dealt with, despite the gravity of disease, treatment, hospital stays, and ongoing drug therapy. I guess it’s not surprising that I find myself not really caring about whether I sign Macy’s daily folder, or wanting to punch the teachers who think another parent-driven school project is in order. Simmer down, teachers; I won’t really punch you but when you assign projects that my child cannot reasonably complete on her own, I do think about it, briefly, because it’s hard to muster the emotional energy needed to guide my child in her education, and I sure don’t want to have to make a trip to Hobby Lobby for supplies.
There’s a never-ending juggling act that comes with the cancer territory when young kids are involved. Like the fact that most of my doctor’s appointments are with surgeons, who tend to do surgery in the mornings and see patients in the afternoon. Sometimes that means I’m cutting it close when seeing the doctor and taking care of business while still making it in time to pick up the kids from school.
Like the fact that I never know when this beast will rear its ugly head again and interfere with our daily life, plans, and schedules. Payton’s Little League season is halfway over, maybe more, and I’ve yet to make it to a single game. For the first time in his Little League “career,” he’s played games for which neither of his parents was in the stands. Not the end of the world, by any stretch, and he’s a pretty resilient kid, but it still bugs me.
Like the fact that sometimes when my kids are venting to me about whatever problem is foremost in their minds, and all I can think is, “It’s not so bad…at least you aren’t dealing with the aftermath of cancer.”
But then I smarten up and realize that yes, they are dealing with the aftermath of cancer. It’s there for them, too, even though they don’t talk about it much or worry about it like I do. It comes out sideways, sometimes, like in Macy’s “getting to know you” questionnaire from the first day of school this year, and her answer to the question “What scares you the most?” Her answer: That my mom will get another infection. Geez, what happened to monsters under the bed? We’ve eclipsed that childhood fear and have sped headlong into unchartered territory here. Like Payton asking us about the annual summer trip to Boston and Salisbury Beach, and wondering if all of us will be going this year. Since I missed it last year, I want to be there even more this year, but part of me hesitates in promising him that, because with this damn disease and this damn infection, I just don’t know. I’m operating under the assumption that the answer is yes, we’re all going this year. But I shy away from promising it.
Oncology report
Posted: April 13, 2011 Filed under: breast cancer | Tags: 20 gauge needle, Arimidex, breast cancer, cancer battle, femara, Jorge Darcourt, Lupron, menopause, oncologist, oncology consultants houston, tamoxifen 8 CommentsMy latest visit to Dr Darcourt was uneventful, which is my favorite kind of doctor visit. Despite the fact that I have to get stuck for blood work and step on the scale every time I go see him, I still like going. As much as you can like going to an oncology visit.
In the beginning of this “cancer journey,” it freaked me out to say “my” and “oncologist” in the same sentence. Not something one usually wishes for, to say the least. But if I have to have an oncologist, my guy is pretty great. Not just because he’s young and Peruvian, either. Although that doesn’t hurt.
Since you’re probably going to google him now, I’ll make it easy on you: 
There ya go.
Just a disclaimer: he was the third oncologist I consulted, and didn’t choose him based on the fact that he’s young and Peruvian. Not just.
Ok, so the appointment was uneventful, and he said the words I love to hear: “I have no reason to think your cancer will come back.” Music to my ears. We talked about Tamoxifen, the chemo pill I take every day and will stay on for 5 years, and the artificially-induced menopause brought on by it and the Lupron shot I get every three months for hormone suppression. In a nutshell, since my cancer was fed by estrogen, it’s easy to control it by depriving it of estrogen. It means I go through menopause a bit early, but that’s a small trade-off for ensuring the cancer doesn’t come back.
The trick is to determine if I’m really in menopause or if once we stop the Lupron shots, we also stop the ‘pause. This is important because it affects the chemo pill I take. Tamoxifen is for pre-menopausal women, i.e., if you weren’t in menopause at the time of diagnosis, you take it. If you’re post-menopausal, you take a different drug, mainly Femara or Arimidex. Either way, I will be on one of these drugs for 5 years. I’m ok with that, because I’m pretty reliable at remembering to take it every day, and it’s another weapon in my arsenal against my cancer.
And taking a pill every day is much easier than getting that Lupron shot. Even though Ionly get it once every 3 months, it’s dreadful. The needle is really big: 20 gauge.
The 20 gauge needle is what is used for port access. It has to be big enough in diameter to not only pierce the skin and the membrane of the port, but also allow for blood to be drawn back out through it.
That’s a big needle.
If you don’t like needles, like me, you may get a little squirmy right about now. That’s ok. Don’t worry if your palms start to sweat, if your heart races, and you feel a little nauseated. All normal reactions to seeing a wonking big needle. But if I have to see it, so do you. I’m good at sharing.
The drug itself is very thick, and has to be warmed before being injected. You know it’s going to hurt. Because it’s thick, it takes several seconds to push the drug through the needle into the body. So the pain lasts. Then once the drug is in, it burns. On the skin and inside. I literally can feel the drug trailing into my body. And yet, I do it willingly. Because I want to starve any cancer cells that may be entertaining thoughts of reforming. I don’t want any uprisings on my watch.
I may take that shot willingly, but I still complain about it. I get it in my left arm, and the bruise from the previous shot, 3 months ago, is always still visible. For several weeks, I will have a hard little knot at the injection site. My arm will be sore for the rest of the day after I get the shot, but then life goes on and it’s business as usual, for the next 3 months.
But yesterday, I made a BIG mistake when getting the shot. I glanced over my shoulder as the nurse was getting ready to inject it. I saw that big-ass needle, glinting in the florescent lights, looking as menacing as an inaninate object can.
Oh, I wish I hadn’t seen that. Somehow the visual reality makes it so much worse. I had to grit my teeth and concentrate on not yelling.
I usually console myself with a beer or a glass of wine on shot days. But yesterday, I was trying to dry out from our Napa trip, so I tried to refrain. I didn’t get very far, and ended up with a Pinot Noir in my glass. But now I’m back to drying out, because I was reading one of my favorite blogs today, and misread one of the lines. It describes waking up and “waiting for the new day to open like a spring margarita.” Oh, wait–it’s
“spring magnolia.” Oops. Guess I’d better get on the wagon, sore arm and all.
Heading to Napa
Posted: April 8, 2011 Filed under: breast cancer | Tags: breast cancer, cancer battle, good friends, infectious disease, napa valley, San Francisco, sunny California 1 CommentThe party into the night was pretty tame last night. If you ask Trevor, the tameness (not lameness, but restraint) was because of the utter lack of tequila. I’d say it’s also because of the fact that we are pacing ourselves in this long, luxurious bath in all things grape. We’ve got a lotta wine to drink, and the day is young.
We said adios to San Fran after a scrumptious breakfast at Pat’s Place, a short walk from our hotel in the brisk, sunny California morning. A crepe filled with mushrooms, avocado and cheese alongside a perfectly foam-sculpted cappuccino laid the right base for the wine-consumption that is to come.
Now, lest you think it’s all about catching a buzz and staying sloppy all weekend, let me remind you that this trip isn’t just about the cheap high. It’s a celebration. Of Yvonne’s 40 years of good living. Of good friends reconnecting, new and old. Of time away from work and home (and darling children). Of carefully-laid and at-long-last executed plans.
And of me finally getting out from under the overreaching arch of cancer and infection, to remember for more than a moment that before the #%*¥ hit the fan, I used to have a life that was full of sunshine, laugher, love, and friends.
It’s so good to be back.
Tomorrow is a big day
Posted: April 6, 2011 Filed under: breast cancer | Tags: birthday celebration, breast cancer, cancer battle, champagne, Domaine Carneros, get-away, infectious disease, IV antibiotics, mastectomy, Napa, Pesu, post-mastectomy, recovery, vacation, wine, wine country, wineries 7 CommentsI’ve learned the hard way from all this stupid cancer business that every day truly is a gift, as hokey as it sounds, and that life is short, as cliched as that sounds, and that you gotta grab each day and milk it for all it’s worth (I think I just made that one up).
It’s pretty easy to get bogged down in these crazy-busy lives of ours, which by the way, are supposed to be made easier and more relaxing with all the time- and labour-saving devices we have, yet it seems that everyone is still rushed off their feet every single day. Which kinda makes it hard to unwrap the gift that is each day and to savor the little things that form a meaningful amalgamation of life as we know it. I know my to-do list is always a mile long, and some days I have to rewrite chores on the new list, since they didn’t get done on their appointed day.
My to-do list is again long today as I prepare to go out of town for the weekend.
Yes, you read that right: I’m leaving town.
Finally.
After an unfortunate series of non-starters all summer, in which no less than 3 much-anticipated trips erupted in a giant puff of post-mastectomy-infection-tinged smoke, I’m finally going on a trip. First it was the Duke girls’ trip to Tahoe. Gone. Then it was the All Star state baseball championship. Adios. And finally, the annual trek to Boston and Salisbury Beach. See ya. Missing one trip was a hard pill to swallow; missing 3 was just plain cruel. No way around the choking down of that horse pill.
But now, there’s Napa.
My beacon of hope in a long, barren season of maladies. Could it be that the end to that dreadful season truly is in sight? I’m starting to believe that it is so. There is a part of me, a teensy part, that still fears a blow-up. But just a teensy part. Or a woonty part, as our friends at Salisbury Beach say. The rest of me is full-steam ahead, preparing for one fabulous weekend full of bottled poetry.
Last time I was in Napa, I was pregnant with Payton, who will be 12 (gulp!) next month. Talk about needing a do-over. And what better reason for a do-over than a BFF’s birthday bash and a celebration of her “40 years of good living,” as the invitation states. I’m in. For celebrating my BFF, for getting a change of scenery, and for relishing this life of mine. 
This “cancer journey” has turned out to be a bit more complicated than I thought. I’m still a destination girl rather than a journey girl, and I don’t think that’s going to change.
But starting tomorrow, if only for the celebratory weekend, I’m going to savor every bit of the destination.
Even if my titanium port-a-cath sets off the security alarms and I ended up getting frisked.
Even if traffic is heavy and the plane is late.
Even if I’m stuck sitting next to a mouth-breather on the plane (no, I’m not talking about Trevor).
Even if the weather turns yucky.
Even if the ever-present antibiotics have killed off some of my wine-savoring tastebuds.
I’m going to suck up every ounce of enjoyment from a trip that has been much anticipated, meticulously planned, and a very long time in coming.
Our first stop in Napa is Domaine Carneros, maker of one of my favorite champagnes.
I may just skip all the other wineries and stay right there.
Playin’ the cancer card
Posted: April 1, 2011 Filed under: breast cancer, drugs | Tags: allergist, breast cancer, cancer battle, cancer card, Flonase, infection, reconstruction, recovery, seasonal allergies 5 CommentsNot because I’m so virtuous, because the truth is, I’d sell my soul to get back to my normal life. Too bad nobody’s buying.
Today I played the cancer card. And I’m not sorry.
My allergists’ office called. The one doctor’s office I don’t hear from on a weekly basis, at the least. The nurse said they can’t call in a refill for my Flonase because I’m “way overdue for a follow-up visit.”
I haven’t had any respiratory problems–that may be the only thing I haven’t had problems with, and my sinuses seem to be the only body part not felled by infections, yes, plural infections. I didn’t think it necessary to go for a follow-up visit.
I’ve also been a little busy.
I told the nurse that I’ve been a little busy. I was nice about it, despite a childish but pressing desire to blister her ears with the entire, complicated, curse-word-filled story.
But I did not. That, people, is what is known as self-control. I don’t exert it all that often, so pardon my need to point it out when the planets are aligned and it does happen.
I simply told the nurse that I’ve been preoccupied with breast cancer, multiple surgeries, infection, and full-time, long-term healing. Long, drawn-out pause. Cue the crickets chirping.
She didn’t say anything, so I wrapped up the already-dead conversation by telling her to please pass along the message that if the doctor still needed to see me, in order to refill a benign prescription for a preventative steroid nasal spray, I would indeed drag my pathetic, battered, scarred, fused, and infused carcass to the office and wait ever-so-patiently for the all-mighty doctor to fill out a perfunctory slip of paper.
The nurse said she would call me back.
I said, thank you ever so much, and please, have a nice day.
Guess what? The prescription is approved, filled, and awaiting pick-up.
As Kenny Rogers so eloquently put it, “You gotta know when to hold ’em, know when to fold ’em.” You also gotta know when to play that cancer card.
Some days…
Posted: March 30, 2011 Filed under: breast cancer, cancer fatigue | Tags: breast cancer, cancer battle, doctor appointments, infectious disease, lab cultures, Methodist Hospital, MRSA, post-surgery infection, stress, Texas Medical Center 5 Comments
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.
Stay tuned.
Don’t annoy the crazy person
Posted: March 29, 2011 Filed under: breast cancer, pets | Tags: anemia, blister packs, breast cancer, cancer battle, crazy, crazy people, Edward Gorey, emotional impact of breast cancer, Ferrex, funny t-shirts, hoi polloi, house arrest, Houston, Nordstrom, oncologist, PSA, Red Sox, road rage, stress, traffic 4 Comments
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’.
This is my iron supplement, Ferrex, that my cutie-patootie oncologist prescribes for me.
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.
Looks like it’s a popular theme. You can also get this version:
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.
Here’s some high fashion for your baby. Need a onesie to announce the craziness? 
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.
If you feel the need to announce your craziness in the kitchen, get this apron. Splatter some tomato sauce on it to look like you’ve been in a dangerous confrontation.
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?
When you suspect MRSA…
Posted: March 27, 2011 Filed under: breast cancer, drugs, infection | Tags: AstraZeneca, breast cancer, butterfly needle, cancer battle, CCSI, cefapim, Cubicin, infection, infectious disease, IV drugs at home, jugular vein, life before cancer diagnosis, MRSA, post-mastectomy, Power Port, shopping, Vancomycin 6 CommentsI 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.
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.













![Winery_Dogs_Cover-231x221[1]](https://pinkunderbelly.com/wp-content/uploads/2011/04/winery_dogs_cover-231x2211.png?w=590)

















