Yesterday

Posted: March 31, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , | 10 Comments

Yesterday was busy, and I was so occupied with celebrating the removal of the last surgical drains (HOORAY!), I didn’t fully process all that happened in the 3 doctors’ visits. Also, in the interest of full disclosure, I learned that two of the three docs read or monitor this blog, and that fact inhibits me. It takes a lot to achieve that, as I’m not easily inhibited or shut-up-able. Yikes.

So if the docs are reading today, hellooooooooo! Hope you’re having a great day filled with smiling patients, easy procedures, and ever-flowing compliments. Y’all deserve it. As I gaze down at my newly created cleavage, I’m indebted to you once again. Thank you, thank you, thank you!

Back to the long day yesterday — it began bright & early at Dr Grimes’s office, and the adventure was kick-started as soon as we walked in the door–Amy and I wondered if someone had spilled a bottle of Febreeze, as there was a serious overdose of artificial freshness in the small waiting area. An older woman who was waiting to see Dr Grimes said she couldn’t smell a thing, darned allergies, and she really hoped it wasn’t her perfume. Amy & I giggled behind our hands at the idea of someone with no sense of smell piling on the perfume, hee hee. Guess what? It was her perfume! As she left the waiting area for an exam room, the smell went with her. Egads.

Dr Grimes was full of wisdom–even more so than usual. I told him that Amy & I took the “Do I Have a Problem with Alcohol?” quiz on one of his HIV pamphlets in the exam room. According to the pamphlet, “people with HIV are prone to abuse alcohol.” They don’t have an exclusive on that propensity, believe me.

So the quiz goes like this: Amy read the questions, and I answered.

  1. Do you lose time from school/work due to drinking? No, but seeing the “due to” construction misused makes me need a drink. It’s “because of” drinking! Sheesh.
  2. Is drinking making your life unhappy? No, just the opposite. It makes my life very, very happy.
  3. Is drinking causing a change or harming your reputation? Nope, it enhances my reputation. It’s all good. But would it kill ya to say “causing a change in or harming your reputation?” Seriously, who writes these things??
  4. Do you feel guilty or have remorse after drinking? No way, I don’t even remember having had the drinks. And another beautiful thing about drinking is that it kills those kinds of feelings (which is why we do it, duh).
  5. Has your performance at school or work declined because of your drinking? On the contrary, my drinking universally enhances my performances.
  6. Do you often drink alone? Define “often.”
  7. Do you ever black out or forget what you have done while you were drinking? What was the question?
  8. Does drinking make you feel strong or overly confident? Why, yes, it does. I couldn’t write this blog without being under the influence, every single time I write. People don’t do this sober, do they?
  9. Has your drinking negatively impacted your relationship with family, friends, and/or loved ones? No, and if they really loved me, they’d get me a refill.
  10. Do you drink and are under the age of 21? Yes, and no. But I like looking at people who are under the age of 21, especially cute guys. No harm in that. And again, can we get a proofreader here? “Do you drink and are you under the age of 21″ flows so much nicer and sounds so much better. It’s not that difficult.

With the quiz completed, Dr Grimes swept into the room and gave us a passing grade on it. We told him that the only problem we have with alcohol is that we weren’t drinking bloody marys as we took the quiz and waited for the doctor. He shared a quote with us from one of his college professors, a man whose first name is Chivas: “My definition of an alcoholic is someone who drinks more than me, and who I don’t like.” Well said, Professor Scotch.

Another funny thing: Dr Grimes was in the middle of the Chivas story when I started stripping down for the physical exam. I don’t think twice about doing this because I’m so used to it at this point, but he clearly doesn’t have a lot of patients do this. I bet he doesn’t have any who were slated for 3 physical exams in the same day. He was working hard to avert his eyes while he finished his story!

The other good quote we got from Dr Grimes came in the course of our discussion of how long it takes to treat and cure infection, and how much more patient I’m being than I have been in the past (he really said that, and I didn’t prompt him — it’s true!). I used to ask him as often as possible when I’d get off the oral antibiotics. I’d even have my friend Laura, who works with him, ask him for me. But now that I’ve had a flare-up and am back on IV antibiotics, in addition to the oral abx, I’ve stopped asking. I will stay on the oral abx as long as I need to. 231 days and counting, but not impatiently.

Ok, the quote: it comes from Dr Grimes’s grandpa, who said “Anything looks fast running past trees.” That’s pretty deep. I’m going to leave the interpretation up to each individual, like a Rorschach test in which everyone comes up with a different answer. 

Let me know what your answer is.

Speaking of open interpretation, Dr Grimes gave me a copy of my pathology consultation report from the Big Dig. Fascinating stuff. I think it warrants a separate post. Don’t want anyone to get behind in their real jobs because this post stretches on too long. Plus, I need to look up a few more words and educate myself a little more. Either that, or have a drink so I can better ignore the multiple references of adipose tissue in the path report.

Thank goodness Amy was with me for the long day yesterday, both because I have proved to need adult supervision, and because I tend to miss half of what the good docs tell me. Not sure when I became such a birdbrain, but once I get in those exam rooms, I can’t seem to retain everything.

That, and I need a witness to some things like the fact that all three docs yesterday approved of my trip to Napa next week. Well, Dr Grimes’s approval was less than wholehearted; he basically said, I’m not going to tell you what to do because I know you will just go ahead and do what you want to do. I’ve learned that about you.” I think he coughed and muttered “tennis” a few times, as if we needed to dredge up the past in which there were rumors of me playing tennis before I was officially cleared to do so.

He said yes to Napa but wants to keep me on the IV abx right up until we leave, just to be sure. He thinks that whatever potential infection was stopped in its tracks before it had a chance to get ugly, hence the lack of progression. He was treating my symptoms but not seeing evidence of anything getting worse, so at this point the extra week of IV drugs is insurance. Anything that ensures me getting on that plane and heading to Wine Country is all right with me. He did tell me to try not to drink too much. Huh, yeah, right. I’ll give that a try. While in Napa. Uh huh. Gonna try real hard. Sure.

He let me go and said to come back in a month, but I had to make a return visit to the infusion room after I saw Dr Spiegel to get my next week’s supply of IV abx, and to have Nurse Shakey change the needle in my port and insert a new one. See why I need to drink, people???

On to Dr Spiegel’s office. Amy and I spent some time in the waiting area reading the pathology report,  giggling, and admiring this week’s delivery of fresh flowers. Once back in the exam room, I stripped down again, the second of three times in one day. I guess that would be weird for some people, but it’s all in a day’s work for me.

Dr Spiegel was as stunning as always, and I wish I’d asked her who cuts her hair because it’s a great cut. She continues to be pleased with the healing going on in the multitude of scars on me, and gave me the ok to ditch the flimsy post-surgical bra and buy a real bra. A real bra! Wow. Haven’t had one of those in almost a year. That’s strangely exciting. What’s not so exciting was learning that my belly may stay a bit swollen for 6 months. There was a lot of excavation done there, so it makes sense, but I’m ready for everything to be back to normal now! I need some compression on my belly to help reduce the swelling. How ironic is it that when I had a bit of a belly, I never wore a “compression garment” but now that my belly has been relocated north, I need a girdle. Fine, whatever, I’d wear a suit of armor at this point if it meant getting rid of the drains. Hooray and hallelujah that the drains are gone. What’s really amazing is that the holes that held the drain tubing are already closed. Not healed completely, and still really bruised, but not open and not seeping any fluid. Yes, it’s another gross photo but this one actually represents something to be celebrated. As in, I’m celebrating the absence of any rubber tubing. And instead of cringing, you should be celebrating that you don’t have any either. And while you’re at it, cross your fingers for continued healing and no drama. And be glad you’re not wearing a “compression garment.” Not that I’m complaining. Just saying be glad it’s not you.

My visit with Dr Spiegel concluded with her blessing to go to Napa, have a great time, just don’t go swimming since the incisions and drain holes aren’t completely healed. Trust me, the last thing I’m going to do is anything to jeopardize the fragile peace that I’ve made with this complicated wreck of a body.

From there, we zipped back to Dr Grimes’s office to take care of the port maintenance and pick up the latest box of goodies, then headed out of the med center and down University, past the beautiful Rice University campus, to Second Silhouette, the nearest medical supply company to get my new bra. Yea, how exciting — getting a bra at a supply store. No boutique or Victoria’s Secret for me. No sir, I got to shop at a store that also sells prosthetics and diabetic socks. Yea.

That’s all right, I was shopping without any drains, so it was all good. We were in and out of there quickly, since we were starving, needed to raise a glass to the drain-free status, and still get to Dr S for the third and final appointment of the day.

After some libation and a quick but yummy lunch, it was onward for the highlight of our week: seeing Dr S. His new office is configured so that he has a little desk visible from the check-in window, which has no glass (love that). He was sitting at the little desk, waiting impatiently for his favorite patient and her trusty escort, who he likes the most! I think he glanced at the clock to remind us that we were late, and I’m sure he didn’t want to hear that the reason we were late involved adult beverages. We said howdy, checked in, then fled to the hallway. He wanted to know where we were going, so I told him: to go smoke a butt. No, really, just needed a pit stop.

After that, we got right into an exam room and I once again eschewed the paper gown.

Greenisites.com

Save that for a “normal” patient who isn’t used to stripping down multiple times a day. I’ve saved a lot of trees from my frequent doctor visits. Always looking on the bright side. And I’d much rather hug a tree than a person. Can’t help it, I’m just not very touchy-feely. I just hope that this new habit of mine isn’t permanent; don’t think I need to strip down for the allergist or the podiatrist.

Dr S joined the chorus of “yeses” saying go to Napa, girl, you’ve earned it. ‘Bout time you got out of town. I remembered to get a letter from him to present to TSA saying I have metal in my body (the port) so I may set off the metal detectors. If they are suspicious, I can always strip down and prove it. Amy showed our shared gratitude by washing his glasses, which we could tell were smudged when he gestured and pointed with them. That’s full service. Always happy to help make Dr S’s life better, easier, more joyful. When he mentioned my little blog, he suggested I say some nice things about him instead of always busting his chops. I may have to start a whole ‘nother blog just for him, and to contain all the words of praise and appreciation I have for him. I forgot to tell him that guest blogger Kayte VanScoy described him as “fit and attractive” and likened him to a combination of Justin Timberlake, Arnold Schwarzenegger, and Karl Lagerfeld. What a mash-up!

We had some serious talk about Little League baseball and his 6-year-old’s stellar season so far. He knows I’m a big baseball fan, and we bonded over baseball about this time last year. He helps out with his son’s team and Amy and I both think that’s awesome. He has a seriously busy schedule and a very important job (well, the work he does for cancer patients, anyway; the more cosmetic stuff not as much), yet he’s proven time and again that his family is his priority. I’m sure the coach appreciates the frequent input that Dr S gives him, and he’s been known to make suggestions on the line-up.

After we solved the problems of the Little League team, our business was done. At least for that visit.

Finally, some good news

Posted: March 30, 2011 | Author: | Filed under: Uncategorized | 7 Comments

THE DRAINS ARE GONE!!!

Whew.

I can’t even begin to express how happy I am about that. I didn’t have to beg or plead, which is even sweeter. Being drain-free for the first time in 4 weeks is so fantastic that I barely noticed how “slooshy” the right one felt coming out. I was forewarned: Dr Spiegel told me that it was in deep, and when she snipped the stitches away and pulled to free it from the depths of my belly, I felt it slurping around like a sea monster quite a distance from its entry point.

No matter, it’s out now, and that was exactly what I had hoped for. Isn’t it nice when things work out that way? Amy had prepped me before we went into the exam room, telling me in her infinite wisdom not to expect to get them removed, so that if it happens it’s a bonus, but if it doesn’t I’m prepared. As usual, she was right.

No more drains is definitely cause for celebration!

Cheers!

Nothing like a glass of cava in the middle of the day. Except maybe a gigantic celebration, which is what we were having. No more drains makes me a very happy girl. To quote Adam Levine, one of my all-time favorite musicians.”If I never see your face again, I won’t mind.” My sentiments exactly.

For all my foodie friends, here’s something almost as delish as the glass of cava: 

Houston’s house-made smoked salmon with toast points and herbed mayo. Only the restaurant isn’t called Houston’s anymore, it’s Hilltop of Hillmont or Hill-something, but the food is still out-of-this world, and I liked the glass the cava came in so much that I had to have it. It has 3 little bees on it, and I like them. In many cultures, bees are symbolic of hope, tireless pursuit, and the sweetness in life.  My new glass and its 3 little bees stand for all of those things, and which certainly have been plentiful this last month. Gonna go fill it up right now with some Piper.

Salud!

Some days…

Posted: March 30, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , , | 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 | Author: | Filed under: breast cancer, pets | Tags: , , , , , , , , , , , , , , , , , , , | 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:

or this one:

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?

Instead of bitchin’ & moanin’

Posted: March 28, 2011 | Author: | Filed under: breast cancer, drugs, infection | Tags: , , , , , , , , , , , | 17 Comments

My first instinct when I sat down at the computer today was to bitch & moan about the fact that I’m rapidly approaching one month post-reconstruction and I still have the 2 JP drains, one on each hip.

Have I mentioned how much I detest and despise these drains? While I understand their importance, and I’m a big supporter of fluid being outside instead of inside my battered body, I detest and despise the drains.

Because of the latest flare-up, i.e., the MRSA infection, the drains will stay for the foreseeable future. It’s a vicious cycle: I probably got the infection from the drains, but the drains have to stay until the infection clears. As long as I’m on IV antibiotics, I need the drains, and as long as I have the drains, I need the IV abx. Twisted, huh?

I’m starting week 2 of House Arrest, and this week isn’t any easier than last. The idea is that if I lay low and do next to nothing, the fluid levels will decrease and I can get the drains removed. But now with the MRSA, the drains need to stay, because if there is infected fluid, it’s gotta come out. Nothing makes me more nervous than infected fluid sitting around making mischief on my insides. I had a crazy idea this weekend: since the drains are staying anyway, why not get some things done around the house? Well, because increased activity means increased fluid levels, and then I’ll be stuck with the drains even longer, that’s why.

Instead of bitching &  moaning ad nauseum about drains and House Arrest, I need to find another topic. My quick run-down of all the positive things about this situation left me uninspired. The usual suspects in my list of “bright sides” seems stale and failed to provide me with the literary verve I need.

But then I remembered my port-a-cath. Yes, the port! That’s a bright spot on this barren landscape of bad news topped by rotten luck. And what a story, too: I thought I needed it for chemo, then I didn’t need it for chemo, and had some trouble with it once I got it, but then ended up needing it for so much more! And voila, the topic du jour.

I used to hate my port. I hated that I had to have it in my life at all. I hated that getting it meant yet another surgery and all the hospital stuff that I detest. At first, it was red and angry and painful, and looked just plain awful. At the risk of sounding like a xenophobe, my body clearly doesn’t like foreign things. First the tissue expander got infected, then the skin around the port got hot and red and big-time uncomfortable. The port made it clear from Day One, on June 25th, that this was not going to be an easy co-existence. The port caused me to spend a Saturday in the ER (Good golly, have I not spent enough time in the hospital already?). Thank goodness there was a “Deadliest Catch” marathon on TV that day, or I would have been fit to be tied.

Questions keep coming in about the port, and after I mentioned it in yesterday’s post, I guess I incited the curiosity again. Here’s Wikipedia’s definition of a port: a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.

I agree with all of that, except for the period being outside of the quotation marks around needle stick at the end of the sentence. The period should be inside the quote marks. Other than that, it’s all good.

While there are lots of different ports, I got the Power Port. I didn’t express a choice, didn’t think about it, but trusted Dr Dempsey to choose the right one for me. I was still healing from that damned infection that showed up after the mastectomy, and wasn’t thinking about which port was best for me. I got the port because the most respected oncologist in my area said I needed chemo, then a another highly-recommended oncologist seconded that opinion, so I was going to do chemo. Long story short, my lymph nodes were clear and my margins were good, but I had micrometasteses, which essentially are cancer cells that are floating freely and not organizing into tumors. Some oncologists consider micromets to be node positive, meaning the lymph nodes are affected, and some oncologists consider them node negative, meaning they have not traveled to the lymph nodes. Some crazy patients, especially those who watched their sweet, irreplaceable mama die from cancer, think the micromets may not be organized, but need to be blasted with chemo anyway.

Yes, that was me.

Statistically, my case was contraindicated with chemo, but I’ve never been a numbers person, and I admit that my initial pro-chemo decision was based on emotion, not statistics or science. I was still reeling from losing my mom, and sure didn’t want my kids to have to suffer that terrible fate. Who am I kidding saying “I was still reeling” — I      AM still reeling and probably will be for the rest of my life. Stupid cancer.

So I reacted emotionally and, driven by fear, decided to do chemo. I had done my due diligence by consulting two vastly different oncologists (one old and established who is super conservative; the other younger than me and quite current on the latest & greatest research, and also highly recommended by a friend in health care. Both doctors based their pro-chemo recommendation on the fact that I was 40 years old and healthy, and able to handle the chemo. Or so we thought.). I wasn’t thrilled with starting chemo — who is? — but was prepared.

Then the mycobacterium entered my life, and 11 months later, is still a huge part of it. The only good thing I can say about the myco is that being sick, sick, sick in the hospital with a post-surgical infection disqualified me for chemo. I was too sick to start it, and my body certainly wouldn’t have withstood it well. In the meantime, we crunched the numbers again, consulted a third oncologist, and I came down off my emotional decision-making high horse and saw that the numbers really didn’t bear it out. Chemo for me would result in a very marginal increase in survival rate.  If the fortunes had not granted me that one small favor, and I had needed chemo but was too sick from the mycobacterium to start it, I would have been a basket case. Much more of a basket case than I already was, that is.

Talk about a blessing in disguise. While I was reeling from and healing from the infection, Dr Dempsey suggested I consult a third oncologist, because maybe chemo wasn’t what I needed. She never thought so, neither did Trevor, and neither did oncologist #3. My cancer happened to be slow & lazy, which is the best kind of cancer to have. Except for the nonexistent kind, that is. So no chemo, just Tamoxifen for 5 years. But I’d already gotten the port.

Nobody ever accused me of sitting on my hands.

The Power Port comes with a handy, dandy patient pack. When I got home from the procedure to insert the port under my skin and into the vein, I laughed at the handy, dandy patient pack. It seemed so stupid, and to me typified the excess and waste that’s prevalent in the pharmaceutic and medical-device business.

There was a pamphlet full of meaningless prose written to allay any fears I might have about the port (like the fact that it’s sewn into the jugular vein. Hello???) and make me feel warm & fuzzy about the little device. It also included a jelly-type bracelet that I guess they expect port people to wear, along with an ID badge with the serial number of my particular device. Why I would ever need this I couldn’t fathom, so I pitched it all. If you were hoping I’d give you the snazzy jelly bracelet, too bad. You missed out.

My favorite part was the list of bragging points:

“Lightweight for patient comfort.” “Reduced artifact.” “Easily identifiable.” “Power injectable.” “Titanium port body.”

Oooooh, fancy.

Despite the goofy marketing, I have to admit that having a port is highly advantageous if you have wimpy veins. And I do have wimpy veins. At first blush, they seem perfectly competent and cooperative, but once the needle pierces the skin, they flop around like fish out of water, making it hard to pin them down (no pun intended).

After multiple hospitalizations for the blasted infection, though, that port came in handy. And it was crucial during the courses of IV antibiotics I have had at home. And it was supposed to be quite handy in my reconstruction, because the anesthesia, antibiotics, and pain killers (lots and lots of pain killers) can flow through the port instead of an IV in the crook of my arm. However, the port was in the way during the Big Dig, and so the Drs S decided not to use it during surgery, even though it had been accessed, and they put an IV in anyway. At least I was asleep for that.

I don’t hate the port anymore.

It still kinda creeps me out, but I don’t hate it. I shiver a little when I think about the fact that it’s sewn into a vein, and not just any vein but the jugular vein. That’s super creepy. I don’t like that the 3 little nubs on the port’s septum are visible through my skin, and if I turn a certain way, the nubs really protrude. I guess that makes it easy for the nurses who access the port, but it looks weird and reminds me that it’s sewn into the jugular. Sometimes it gets crunched when I’m sleeping on my left side, but I’m still not allowed to sleep on my side since the reconstruction, so never mind.

Several people have asked me why I still have the port and when I’m going to get it out. The answer is not until the infection is gone for good. And no, I don’t know how long it will take. Almost a year into it, I still don’t know. I stopped asking, and you should too.

The main downside to keeping the port is that when it’s not being used, there’s some maintenance required. No big deal, just a trip to see the oncology nurses every 6 weeks. Every visit reminds me how fortunate I am, and that my cancer business could have been even more serious. The infection is plenty serious, but at least the cancer side of things was pretty straightforward.

So the port maintenance goes something like this: the nurse puts a sterile drape around the port site and tells me not to look down or breathe on it. She scrubs the top of the skin on top of the port real well with iodine. It’s cold, and the sensation of the iodine-dipped wand passing repeatedly over the port is disconcerting. The smell of the iodine is gross and reminds me of post-infection wound care, without a single happy memory to be found.

After rigorous cleaning, the nurse jabs a short but very thick butterfly needle through the port’s septum, using the three raised nubs to guide her. Every time I’ve had it done, which had been lots, the nurse has essentially told me to brace myself for a really big stick. They do not exaggerate. The Power Port website says, “For most patients, there is only a  mild pricking sensation felt during needle insertion. Frequently, the sensation of the needle insertion decreases over time.”

Lies. All lies.

Sorry if the photo sicks you out, but if I have to endure the “mild pricking sensation,” surely you can manage to peep at the picture.

Once the super-thick needle is in, the nurse attaches it to a thin tube that she can then attach a syringe to and inject whatever needs to be injected: chemo drugs, antibiotic, pain killers (yes, bring on the pain killers!) some contrast dye for certain scans, or in the case of port maintenance, saline and heparin.

After I’d had this process done several times, one of the chemo nurses asked me if I had used the numbing cream before that day’s appointment. Numbing cream?? What numbing cream? No one had ever mentioned that before.

Well guess what–there’s a numbing cream. Lidocaine and Lanocaine and some other caine all whipped up in a prescription cream that will make the port maintenance so much more pleasant. Yes, please. It does help (when I remember to apply it before my maintenance appointments), and Macy and her friend Ella both used it on their earlobes when they got their ears pierced.

So every 6 weeks I get the port flushed–sometimes with and sometimes without the numbing cream. No big whoop, although one day it bled quite a bit after the needle came out, and made a bloody spot on my most favorite white hoody that remains even after multiple bleachings. Perhaps it’s a symbol of what I’ve been through, and of how much I can endure. It’s a reminder not to whitewash the bad stuff, to leave a hint of the gore around to bear witness to the hard times and rough road that one must travel, sometimes precariously, sometimes fast and sometimes slowly, to get to the other side.

When you suspect MRSA…

Posted: March 27, 2011 | Author: | Filed under: breast cancer, drugs, infection | Tags: , , , , , , , , , , , , , , , , | 6 Comments

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

Posted: March 26, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , | 9 Comments

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…

Posted: March 25, 2011 | Author: | Filed under: breast cancer, cancer fatigue, infection | Tags: , , , , , , , , , , , , , | 18 Comments

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.

Stop the ride: I want off!

Posted: March 25, 2011 | Author: | Filed under: breast cancer, infection | Tags: , , , , , , , , , , , , , , , , , , , , , | 17 Comments

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.

House arrest

Posted: March 24, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , | 9 Comments

Haven’t been feeling very bloggy today, which is unusual for me as I’m rarely at a loss for words. The norm is for me to wake up with a blog topic in mind, and I generally have several other topics infiltrate my brain every day as I go about my daily business. Some are interesting, and if the planets are aligned properly, I jot down a note or enter the info in my phone for later, but sometimes I don’t slow down enough and think I’ll remember it all on my own. Ha! That seldom works out for me. Who knows what brilliant blog posts are lost in my grey matter because I was cocky enough to think I could hold that thought in my head while my brain is on overdrive, processing all the medical hoo-ha since surgery.

Of the blog topics that do survive to see the light of day, however, some make the cut, some don’t, and lately 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.

But today the blog muses weren’t speaking to me. I chalked it up to the cabin fever, ennui, and general restlessness that accompany my current house arrest. I’ve been laying low all week (and it has been a long week) for a very specific purpose: to decrease the amount of fluid exiting my body and entering the JP drains so that I can get those damned drains removed.

I’ve had a bit of a history with the drains, going back to the mastectomy, and because I’m a busy-body, my drains’ output tends to be high and they have to stay in longer. I think I had 2 drains for 5 weeks post-mastectomy; can’t remember exactly but it felt like forever, and once they were finally removed, skin was growing around one of them and had actually adhered. Yes, the removal was ugly and painful.

But that’s not why I hate the drains. I can handle the ugliness and the pain. I can handle the discomfort of a rubber tube stitched into my side. I can handle the hole in my body with said rubber tube coming out. I can handle the creepiness of not knowing exactly how far that sucker is threaded through my body. I can handle feeling like a medical freak show when I go in public with said tubes sticking out and snaking from my sides into my sling bag. I can handle the wardrobe challenges presented by needing to cover up yet accommodate and not smoosh, all at the same time. I can handle the draining of them everyday, even though what comes out is nasty and not always liquid (and that’s all I’m going to say about that).

I understand the value and purpose of JP drains. I know that if the drains weren’t sucking the fluid out, it wouldn’t magically go away but would instead pool inside my body and create a seroma. I need a seroma, or any other complication, about as much as I need a hole in the head, as my sweet mama used to say. So I make peace with the drains, even though I curse them under my breath and despise them and rue the day they entered my life. Seriously rueing the day here.

I’m not loving my house arrest. I’m not so good at the “doing nothing” phenomenon that many people seem to embrace. I don’t enjoy this “down time” and I stink at being lazy. I especially don’t enjoy forced laziness. It’s just not for me. I understand and accept it but not happily and I would kick & scream to protest but that’s not very restful.

Day One of House Arrest was easy because by the time I got home from my appointment with Dr Spiegel at the med center, it was almost time for school to be out, and the day was half over. Day Two passed uneventfully; I watched a movie but don’t even remember now what it was. By evening, I was starting to get cabin fever but managed not to bitch about it too much. Day Three of House Arrest seemed longer than Day Two, but I watched another movie that was worth  mentioning, and I may even have to write a review of; if you can’t wait for that, the movie is City Island with Andy Garcia and Juliana Margulies. It’s good. Really good.

The highlight of Day Four of House Arrest was the arrival of Melanie and little Luke of the million-watt smile. Melanie is kind enough to bring me a big cup of Green Drink and to blowdry and flat-iron my hair, since I’m still not supposed to lift my arms that much. We had a great visit and there’s a lot to be said for having clean hair, but there’s something kinda sad about the highlight of the day being over by 10 a.m. Sigh.

I’ve discovered that sitting in front of the computer can be a gigantic time-suck. Who knew? I usually sit at the computer (and “sit” may be stretching it, since I tend to perch on one corner of the desk chair, all the better to jump out of it fast and move on to the next task) briefly. I’ve never been one to spend all day in front of the computer. I don’t really enjoy reading from the screen (yet I  love my kindle, so way to go, kindle creators). I’m not a gamer, either, so I don’t lose myself in the online gaming world. I thought about taking up online gambling, but I like to shop too much to throw my money away, so that’s not going to happen.

I do get a lot of info from various breast cancer organizations, and I usually skim the bevy of emails in my inbox on the topic, deleting more often than fully perusing. This one caught my eye, though, both because I have time on my hands to notice it, and because it seems so insistent and urgent. This one email contains multiple links, each one clamoring for more attention than the next:

Don’t Restrict Access To Mammograms!

Help Women With Breast Cancer by Covering Their Medical Bills!

Support Breast Cancer Genetic Marker Testing!

On Sale: Pink Ribbon Water Bottle!

Stop Canceling Women’s Policies!

Fund Women’s Exams in Remote Guyana!

Also a lot of urging me to tell Secretary of Health & Human Services Kathleen Sebelius what I think and which programs she should and should not endorse.

I’m not making this up. Even in the midst of my wealth of free time, I couldn’t make this up. The email is from a group called Greater Good Network! No idea who they are or how they got ahold of me, but I do know this: they use a lot of exclamation marks. Yes! They do! A lot!

That makes me tired. The forced excitement! And the wide range of serious health issues! And the political ramifications! I’m going to have to unsubscribe from their distribution list. Reading one email made me tired. Wonder if I have time for a nap.

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