Yesterday

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.

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Finally, some good news

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…

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

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’

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…

I was just looking at some info online about Cubicin, my poorly named but hopefully awesome new antibiotic. The heading of the website caught my eye: When you suspect MRSA cSSSI or bactermia—use CUBICIN first!

Well, in my usual headstrong style, I did not use Cubicin first. I like to rebel that way. It’s not much, but it’s all I’ve got these days.

But now I am on Cubicin, because we not only suspect MRSA, we know it, and I’m back to playing by the rules and toeing the line. For now, anyway.

I’ve learned some things. That’s one thing I will say about this “cancer journey” — the education never stops. Just when I think I’ve got it all figured out and have “been there, done that” something new pops up and presents a whole new learning curve.

If someone had asked me last year if I could see myself administering IV drugs to myself at home, I’d have said nope, you’re whacked,  there’s no way that’s happening.

And yet, here I am, administering IV drugs to myself at home.

If someone had asked me last year if I could envision a breast cancer diagnosis, a bilateral mastectomy, nearly a month in the hospital, and not one but two teams of infectious disease doctors working to keep a wily infection and its friend MRSA at bay, I would have asked what they’ve been smoking.

Yet here I am, looking at that very scenario.

Life is funny that way. And by funny I  mean peculiar, because let’s be honest: there’s nothing funny about any of the things I just listed.

AstraZeneca markets this drug in the US. I’m not sure if Cubicin is the US name for the drug, but whoever named it must have been having an off day. It’s in the daptomycin family, which means precious little except that it adds another notch to my belt. If I were to list all the different antibiotics I’ve been on since May of last year, this post would stretch on and on. Suffice to say I’ve had just about all of them, from Azithromycin to Zyvox, in this long and winding road.

One thing on Cubicin’s website made me laugh: “CUBICIN (daptomycin) is indicated for complicated skin and skin structure infections (CCSI).” Yep, this is complicated all right. I don’t seem to know how to do this any other way. My friend Laura, the transplant nurse, laughs and says, “Nothing about your case has been textbook, my friend.” True, so true.

Cubicin’s website lists the requisite claims of awesomeness along with limitations and warnings. It’s not indicated to treat pneumonia, if you were wondering, nor is it effective for the treatment of left-sided infective endocarditis due to S. aureus. I’m not exactly sure what that ailment is, but I’m sure glad I don’t have it. I do, however, have a problem with the website’s use of  “due to” in that construction. Any monkey knows it should be “because of” as “due to” is a temporal phrase to denote time or expectation, not causation. Man, it bugs me when they get that one wrong.

Moving on.

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

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

That’s a very short list.

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

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

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

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

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

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

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

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

My supplies look like this:

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

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

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

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

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

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

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

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

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


Another day, another antibiotic

After the outrageously bad day I had yesterday, I’m happy to report that things are better. Way better. I didn’t suffer from alcohol poisoning, nor did I eat my weight in ice cream, and I didn’t impair anyone’s hearing or make any ears bleed with cuss-word-filled rants, so we’re doing well on the moderation front.

All I needed was a tall flute of my favorite elixir, Piper Sonoma, and the presence of good friends. Once again, Jill & Keith provided both, and the time spent inhaling the heady fragrance of their about-to-explode-in-blooms satsuma tree was wonderfully restorative. 

Each one of these highly fragrant flowers will become an orange, and Keith may well have to stand under that tree full-time to support the weight of all that fruit. I fully expect to see you on my doorstep with bags full of fruit, mister. I’ll eat ’em raw, juice ’em, and mix ’em with any manner of alcohol. Last year I didn’t get to witness the tree in its pre-fruit state, and now that I have, I plan to make this an annual event.

It’s springtime in Houston, which means horrific allergies from the myriad things blooming, but that’s one thing (maybe the only thing) I haven’t suffered from of late, so I can enjoy the flora & fauna without the sneezing & coughing. Perfect. As I speak (or type), I’m peering out my front window to the lake across the street where Payton spied an alligator this morning, noticing the wildflowers in bloom along the bank and the hyacinths blooming in the neighbor’s yard. I love them both. Wildflowers because they just exist (thanks, Lady Bird Johnson), and hyacinths because they bring the smell of spring into sharp focus.

All the local Bradford pear trees are blooming, and they are as showy and beautiful as always. When they’re not showing off their blooms, they stay full and green year-round, and those leaves even turn colors in the fall, which we don’t see much of in the land of eternal summer.

Not that I’m complaining. It’s currently 77 degrees, sunny, with puffy clouds in the sky. The usual hint of humidity lingers in the air, but it is Houston, after all.

My tulip tree has flung itself into bloom in the backyard, which is always a lovely site. It’s not nearly as showy as the Bradford pears, but more colorful and exotic, for sure. Love the deep pink and the huge petals of each flower. Considering how precious little attention anything in my yard has gotten from me, it’s a wonder there’s any color at all, but thanks to the gardening fairy, otherwise known as Ed, there is, and I’m enormously grateful, especially during my house arrest. And no, I’m not saying that Ed is a fairy. Just that he shows up and takes care of my plants when I can’t. That’s how rumors get started, and that’s just not nice.

I’m getting acquainted with Cubicin, my new antibiotic. It replaced the old standby, vancomycin, yesterday when I had an unexpected reaction to the IV vanco. So far Cubicin has done an admirable job of trying to assert its dominance over my weary body, but I’m reserving judgement on how successful it will be in that pursuit. For now, it’s bobbing and weaving with the most elemental of antibiotic side-effects, which is frequent trips to the bathroom. Big whoop. At the risk of poking the caged cat, I wonder if that’s all it’s got. I certainly hope so. What I really don’t need is a return to the inception of all this antibiotic therapy this summer, when the drugs waged a holy war on my gut and gained quite a stronghold. Siggi’s yogurt at $2.50 a cup was my best weapon; yes, I know that Dannon and Yoplait are a fraction of the price, but they are neither Islandic nor delicious enough to elicit haikus from satisfied customers like this:

Tangy sweet mouthful
Clean as snow and good and whole
Pudding of my heart.

so yes I will spend crazy money on Siggi’s again if I have to. Take that, Cubicin. 

I bet no one has ever written a haiku about Cubicin. It’s such a strange drug name that even though I’ve typed it here and via text at least 100 times in the last 12 hours, I still can’t wrap my head around it and have to double-check it again and again. Who names these drugs anyway?

Sounds like a future blog topic waiting to happen, right?