The hits keep coming…

I just got back from the infectious disease doctor’s office and wow, what a visit. What a day. There’s not enough champagne in the world to soothe this jangled mess of nerves. I don’t know where to start, so buckle up and bear with me.

It started with a phone call this morning from Rhonda from the infectious disease team’s office. She said hang tight, they weren’t going to start any new antibiotics until Wednesday when I have an office visit scheduled. I registered my discomfort with waiting 5 days, and hung up wondering what to do next about a 2nd opinion, when Dr Grimes called me back himself to explain.

It was a bit of a misunderstanding: he didn’t realize I was having symptoms in the newly created breast, which is the site of the original infection (the dreaded mycobacterium, which has waaaaaaaay overstayed its welcome). Once he realized we weren’t talking about a problem with the drain site from the belly incision, he got busy and ordered IV antibiotics and said come in today and start the first infusion in my office.

But first, I saw my plastic surgeon for my weekly post-op visit. He was in an effusively good mood, and entered the room smiling from ear to ear. He was at least 30 minutes late, and came in fully loaded: the first thing he said was, “I’m making up for the fact that last week you were late.”

Uh, yeah, I was 5 minutes late. I said as much, and he started to say something along the lines of it’s ok for him to be 6 times as late because he’s the doctor and I’m the lowly patient, but I cut him off and said, You are NOT that much more important than me, so zip it.

He did. I filled him in on the infection scenario and he had some things to say. He’s persnickety, and I love it. From his standpoint, things look good physically and he’s not super concerned about the new infection but was in agreement with Dr Spiegel that a visit to the ID docs was necessary. He said he wanted to talk to both Dr Spiegel and Dr Grimes today to make sure they’re all on the same page.

So off I went to the med center, again. The one time I don’t have any of my handlers present was, natch, the one time I needed them. More on that shortly.

Dr Grimes, who I adore for his problem-solving skills, rejiggered his schedule to see me so he could get the full story and examine me. Since they worked me in, I was in the secondary infusion room, which is little more than a broom closet. There are 2 recliners and 2 IV poles, a desk & computer and mini-fridge (which had nothing of interest in it, and yes I checked). There were 2 nurses in this tiny space and they and Dr G were stepping all over each other while I was comfy in my recliner. But without a beverage equal to the stress of my day. This room is so crowded that if both recliners were reclined, the people sitting in them (across from each other) would be tangled up. Oh, how I hate small spaces and crowded rooms.

Dr G needed to take a look at the original infection site, now home of the newly created right breast. The older of the 2 nurses, who is mid-50s and easily 100 lbs overweight, said, Oh aren’t you lucky to have gotten new boobs.

Screeeeeeeeeeeeeeeeeeeech.

That would be my patience coming to a grinding halt.

I said, yeah, that’s what everyone says, which sounds great, but they look like this: and I took off my shirt.

What I see as scar-ridden and jam-packed with misfortune and hardship and pain, medical professionals tend to see as pretty amazing. And  yes, going from a completely flat, sunken, and concaved on the right side to two round and realistic breasts is pretty amazing. But I don’t want to hear the “yea, new boobs” line ever again.

The older nurse actually said, in front of Dr G, “Well, at least they’re perky. Mine haven’t been perky in a long time.”

Again, that sound you heard was my fuse erupting and the final straw shattering into a million pieces. I’d trade perky boobs for my old life in a heartbeat. One thing I’ve learned in all this mess: boobs are overrated. Especially the ones that try to kill ya.

I  kept my composure, and so did Dr G, because I suppose she was trying to be positive, and Lord knows that’s a tall order in my situation. So, long story short, Dr G ordered yet another culture and said to get started with the infusion.

I’ve had vancomycin a lot. As in, in each of my hospitalizations, and at home. I’m tight with the vanco. Because I still have my port, it’s easy to administer the IV antibiotics, which is good because via IV is the only way to get vanco. It’s a wonder drug that in the past has worked for me, and worked fast.

Can you guess where this is going?

Because my body can’t do anything the easy way, or without complications, or absent drama these days, I had a reaction to the vanco. My old friend coursed through my bloodstream faster than it ever had in the past, and my body said, whoa, slow down this is creepy and we need to take things down a notch.

And by take things down a notch, I mean I started itching like crazy, felt like I had bugs crawling, in my hair, felt my skin burning, and my hands swelled up.

I’m not allergic to anything, and I’ve never been stung by a bee. Before breast cancer and infections entered my life, I had a pretty strong constitution and a cast-iron stomach. Now, however, I’m reduced to an itchy, burning, swollen, bug-infested mess.

I was about 40 minutes into the hour-long infusion at this point, so the nurses paged Dr G from his hospital rounds and he said finish the dose but administer some Benadryl and then start a second, replacement antibiotic, Cubicin. It’s new, similar to my old-friend-but-now-enemy vanco, and supposedly less likely to cause a reaction.

I need a lot more things like Cubicin in my life. The only drawback to it is that it takes about half an hour for the in-house pharmacist to mix up because it’s a giant molecule that takes a while to dissolve. So I had to wait. In the tiny little room. With both nurses, plus another patient who had joined us. He got hooked up to whatever drugs he needs (I tried to read the bag hanging from his IV pole but couldn’t), and promptly went to sleep. And snored through everything. Man, he looked peaceful.

The Benadryl made me kinda sleepy, but I only took half of what they offered because well, I knew it would make me sleepy, and I had driven myself there and had to get myself home. With my hands so swollen I literally couldn’t make a fist.

Luckily, the reaction didn’t progress beyond the itching, burning, swelling and buggyness, and the Cubicin infused without incident. Finally, something goes right today! And of course, now I know why they wanted the first infusion to take place in the office. Being the impatient old pro with home-health issues, I had lobbied to just run over to my oncologist’s office around the corner to have my port accessed, then have the antibiotic delivered to my house and get cracking. Luckily, Dr G is a lot smarter than I am.

So with the second drug infused safely, I was free to go but first had to go drop off the sample of the drain fluid at the lab. Now, “at the lab” at Methodist in the med center means in a different building and a long walk. Half outta my head on Benadryl and still swollen to the point of really wondering if I could get my credit card out of my sling bag to pay the valet, I left Dr G’s office.

With a good-sized box of drugs and supplies to haul with me.

Yep, they sent me home with a party favor: a box full of Cubicin, saline syringes and heparin flushes. I got to carry the box, and my lab specimen, across the Methodist campus.

Did I mention that this is the one appointment I attended unaccompanied? Rotten luck, that. Not only did I have to operate the giant sausages that were my fingers, I had to find my way with my Benadryl-addled brain limping along.

I went to the place I thought I was supposed to go, and tried to leave my lab specimen with a receptionist. She smiled broadly and did a fantastic job of disguising her disgust as I handed her a pee cup full of drain fluid. Kind soul that she is, she redirected me and sent me on my way to the lab, not the registration desk.

Trekked my way to the lab and found it with no wrong turns (hallelujah! this piece of junk day is turning around!) only to find that I was expected to fill out a form and list all the particulars of my insurance card. Which I did not have.

I explained as nicely as I could (which I admit, wasn’t very nice), that I’ve spent more than two weeks hospitalized in the Methodist system, both at the med center and in Sugar Land, and see no less than 4 doctors who are affiliated with said system, and if she can’t find me in the system then she could take the lab specimen and shove it.

Not really, at least not the “shove it” part but I was tempted. I told her I didn’t have my insurance card because I was still attached to my surgical drains and can’t carry my normal purse, blah blah blah. She said whatever, crazy lady; just fill out as much as you can and be gone.

And that’s exactly what I did.

And I managed to find my way back to the other building, to the valet. But on the way, as I was calculating the best way to make these giant fingers work to open my sling bag, I realized I didn’t have a valet ticket. The little blue slip that the valet always hands me in exchange for my wheels. Never got one.

Or did I? Just because I don’t have it doesn’t mean I never got it, and my mind was clicking along frantically trying to remember if I got the blue slip. I really didn’t think so, but clearly after the day I’ve had, I can’t be trusted and need adult supervision.

I remembered something odd about dropping my car with the valet: he asked how long I would be and if I wanted him to park it close. I said, probably 3 hours and I don’t care where you park it, whatever is easiest for you. That’s an odd thing because the valet usually doesn’t say much but hands over the blue slip. So I hauled myself and my box o’ goodies to the cashier to confess that I don’t have a ticket and was about to launch into a rousing speech of, I don’t care how much it costs to get my car out of hock, I just wanna go home and I wanna go now. I was a little worked up. Thankfully, the speech wasn’t necessary, and when I told the cashier my tale of woe, i.e., that I never got a ticket, she simply said, go on outside.

I guess sometimes the valets give ya a freebie. But then I’m left with the quandry of not exactly remembering which valet took my car without giving me a ticket, and not knowing for sure if he was giving me a freebie or if he forgot or I lost it or what. And the bigger question was: how do I let them know that I have no ticket, haven’t paid, but still need my car?

Again, I needed my handlers. In the worst way.

After a few minutes, the valet that I suspected was the one but I wasn’t 100 percent sure motioned to me and asked if I was ready for my car. Um, sure, yeah, that would be why I’m standing in the valet pick-up/loading zone area. He said navy Tahoe, right? I said yep, and he fetched my car, which sure enough he had parked close, as in right around the bend–not on the roof, or across the street, or wherever they usually park. He is officially my  new favorite, and I’m very glad that when confronted with the choice between a single $1 bill and a $5 bill, I gave him the 5 for a tip. Still made out like a bandit since I didn’t have to pay for the parking at all. And it’s a small miracle that my over-inflated fingers were able to work at all, but thank goodness they did so that nice man could get his tip.

The ending to the whole saga came once I was in my car and on the road home, finally. Still a little itchy, really sleepy, way exhausted, fingers at least 5 times their normal size, but on the road home. The phone rang, and it was my plastic surgeon’s nurse, calling to tell me that he talked to Dr Spiegel and they both agreed that it was ok for me to go ahead and get the IV infusion from Dr Grimes.

Uh-oh. Were they expecting me to wait and get their permission or blessing on that? I had no idea. Good thing they were all on the same page.


Stop the ride: I want off!

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

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.


Ithaka

How appropriate after yesterday’s post that the first thing I read today is an excerpt from the poem “Ithaka” by Constatin Cavafy. Remember that yesterday’s post contained a photo depicting my personal vision of paradise? Guess what Ithaka looks like?

Also appropriate is that Amy Hoover showed up on my doorstep last night with a real-life superhero cape, which I clearly need to continue this “journey.” She doesn’t need a cape, because she really is a superhero, but her youngest son, Carter, has one and was sweet enough to loan it to me. We’re changing the C for Carter to C for Cancer-killer. I love the cape.

I’ve been struggling with the “journey” part of my recovery from major reconstruction surgery. I’m not a journey kind of girl; I’m all about the destination. Don’t care how we get there, it’s the getting there that matters to me.

Well, guess what? On a “cancer journey” you’re never “there” and the idea of being “done” is laughable because there really is no end point. There are transitions and transformations, and at some point one does graduate from cancer patient to cancer survivor, but there aren’t any signposts or mile markers along the way, so hell if I know where I am in this whole journey. I can say that so far, to quote the Grateful Dead, “What a long, strange trip it’s been.”

Enter Constantin Cavafy. Fellow Greek, also a wordsmith (although he was way, way better at the craft than I). He was born and died on the same day, April 29 (1863-1933). I must say, that’s a terrible way to celebrate a birthday; I hope he got a piece of cake before he croaked. I also think it’s terrible, although understandable, that his family chose to Americanize their surname, Kavafis. My dad’s dad came over from “the Old Country,” as the Greeks refer to the homeland, speaking no English with very little money, like millions of other immigrants. Once he settled and raised his family, he wanted them to be Americanized, to shake off the immigrant stink that was considered unsavory, even though the USA is purported to be a melting pot. Thankfully, my Papou did not Americanize our surname, although my dad did change the spelling slightly in 8th grade, from Katopodis to Katapodis, to make it easier for the sports announcers to pronounce it properly; Kat-uh-po-dus instead of Ka-top-uh-dus. True story.

So Kavafis becomes Cavafy, and Constantin writes some poetry. He published more than 150 poems, the most well-known, “Ithaka,” after he turned 40. Some might say he’s a late bloomer, but those of us in the over-40 crowd say, Giddyup.

“Ithaka” was written in 1894, revised in 1910, published in 1911 then published in English in 1924. Talk about a journey: 16 years to complete, then another 13 years to reach a wide audience. I hope Constantin was more patient than I am. I’m sure glad he had a few good years between the poem’s success and his death, and I hope he savored it.

Some believe that the subject of “Ithaka” is Odysseus, from Homer’s epic poem The Odyssey. I think, however, it applies to anyone who is on a journey, and although Ithaka was the finish line or end point for Odysseus, the location is superceded by the ideal.

“Ithaka” begins with some advice for the traveler, which I think applies to lots of journeys (although on my particular journey I don’t have to “hope the voyage is a long one” because it is, boy howdy it is).

As you set out for Ithaka
hope the voyage is a long one,
full of adventure, full of discovery.
Laistrygonians and Cyclops,
angry Poseidon—don’t be afraid of them:
you’ll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.

Well, I certainly have encountered my share of Laistrygonians, Cyclops and angry Poseidons in this “cancer journey.” While Cavafy referenced these giants (cannibals, one-eyed monsters, and the God of the Sea, respectively), I believe such bad-boys take numerous forms and can also be representative of disease, infection, and hardship.

Ok, so far my voyage has indeed been long, with what some would consider adventure and discovery, and full of bad guys, and I honestly haven’t been afraid of them. Frustrated by and utterly sick of them, yes, but not afraid. So far so good.

I’ve tried to keep my thoughts raised high, and thanks to my mom’s “walk on the sunny side of the street” schooling, I think I’ve done that. Sure there have been some bad days, but I’m not going to sit around asking, Why me? when it really doesn’t matter, and it certainly doesn’t change anything.

I can’t say that I have a “rare excitement” stirring my spirit and body, although maybe I did while on morphine. More likely it was while on Versed. That’s one of my favorites; such a happy place.

“Ithaka” goes on to extol the pleasure of steaming into unseen harbors on a summer morning to “buy fine things” and “gather knowledge from their scholars.” Hmmm, exploring, shopping, and learning: now that sounds like my kind of trip. Cavafy implores us to keep Ithaka always in our mind and to remember that “arriving there is what you are destined for.”

Now here’s the part that really speaks to me today, as I continue to struggle with the down-time of recovery, as I want to be “back to normal” and wait impatiently for the passage of time and the reaching of milestones that will prove that it is so.

But do not hurry the journey at all.
Better if it lasts for years,
so you are old by the time you reach the island,
wealthy with all you have gained on the way.

I have a problem with the idea of the journey lasting for years, even though I know that it’s reality. I can accept it, but I don’t have to like it. I do hope that I am indeed old by the time I reach the island, and I already feel wealthy with all I have gained on the way.



Just another day in paradise

To me, paradise looks something like this: 

Insert a comfy chaise lounge and a pitcher of perfectly mixed margaritas or a bottle of Vueve Cliquot, and I’m good. Add a compelling novel I’m really good.

I can’t conjure up a photo that shows the opposite of my version of paradise, but whatever it is, I’m smack-dab in the middle. Instead of sitting beachside on the chaise, staring out at a peaceful blue sea and feeling the warm rays of the sun on my skin, I’m still in my jammies, back in bed, feeling rotten with no end in sight. Not complaining, just explaining.

This is the portion of the program in which I make a quick mental run-down of all the things that are going right these days. The list is shorter than I’d like, but my expectations are high, and it’s good to have a little perspective.

Sadly, once my blessings have been counted and perspective delivered, the realization of my situation sinks in. Sure, it’s one more week of convalescence out of my entire life. One week isn’t much, right? But the days are long, and the frustrations grow with all the things I still can’t do. Add to that the fact that I still have the drains, when I really, really, really thought I’d get at least one of them pulled yesterday, and I’m blue. Knowing that I will have the drains for yet another week makes me bluer still.

It’s my own damn fault for setting the bar so high, for having the audacity to expect to be nearly well by the 3rd week. I was fully prepared to dedicate two full weeks to feeling crummy, walking hunched-over, aching all over, and feeling like a full-blown invalid. I could give up my independence and my car keys for two weeks, no problem. Those expectations were reasonable. The DIEP surgery was intense, but I was ok with that.

But then I snuck my Super Girl cape on over my hospital gown. After the agony of getting in and out of bed the first few times passed, I spread that cape across my shoulders and pulled it tight around the 17-inch-long scar on my belly (yes, I measured it and no I’m not exaggerating it. Those of you who have seen it know. And I apologize if your retinas were burned by the reality of my gutting).

My cape and I powered through the requisite hospital stay, and I got home a few days early. Once home, the progress rolled on and I was on the mend. This was do-able. This wasn’t so bad. Recovery was within my grasp. Every day got a little bit better, and I began to think the worst of it was behind me.

I packed up my cape, thinking I no longer needed superpowers and that I could return to “normal.”

Super Girl is not known for her brains.

That fast-tracked recovery came to a screeching halt with the appearance of the divot in the newly created right breast. This was troublesome because it was in the same spot as the post-mastectomy infection, aka my arch nemesis, mycobacterium fortuitum. Oh how I despise that bacteria. The only good thing about it has been the education it has forced me to undergo, and the addition of words like nosocomial and gram-positive will surely help my Scrabble game. The divot was followed by a fever, then hardening in the previously soft newly created right breast, and rounded out by some intense pain in the area around the remaining right drain.

In other words, paradise lost.

It has been widely reported that I’m a very impatient patient. These reports are true. I’m no good at convalescing and have no patience for the slow pace and endless days of non-productivity. The list of things I’m not getting done is long, very long. I try not to think about the process of digging out from under this period of doing nothing; that’s way too depressing. I don’t even look at the calendar anymore because there’s nothing on it but doctor’s appointments, and I don’t need the reminder of all the things I’m missing. My tennis team and Payton’s Little League team both forge on through their seasons without me. I haven’t seen a baseball game yet, and even though my poor boy is wearing the dreaded Yankees uniform this season, I’d still like to see him take the field, step up to the plate, and grace my favorite spectator sport with his presence. I would really like to be just another parent at just another game, bum aching from the metal bleachers. I miss the sights and sounds of the ballpark, and in my current state, there’s no telling when I’ll make it there. Opening Day ceremonies are Saturday, and my little boy gets to march with his All Star team from this past summer, with their Sectional and District champion banners. I missed the entire summer of baseball because of the post-mastectomy infection, and here we are in the midst of another season, and I’m still on the DL.

One step forward, two steps back.

Maybe I’d better unpack that cape. I think I’m going to need it. 


Update on the jerk

Amy says I need to post an update, and she’s always right, so here I am. Saw Dr Spiegel this a.m. and she’s not overly concerned with the fever, the firmness, the divot or the discomfort down my right side from the faulty drain. The right drain does indeed seem to be faulty, and she supports the unpopular (with me, anyway) opinion that the left drain is compensating for the right. Both drains are staying at least another week. Boo hiss. I wanted to start crying right then & there, but I’m way too proud for that.

She did culture the drain fluid and is looking for answers to my conundrum. She suspects a pseudomona and we hope to know for sure soon. She dug around on my new right breast A LOT (and I do mean dug, as in with a sharp object in hand), looking for fluid to collect and culture. No fluid to be found, even after she opened up the suture line AND tried to aspirate with a very long needle.

No fluid is good news but the very long needle was bad. I told the doc it would be a good day for a Xanax but I didn’t have one on me, not even in my “bag of tricks” as Amy calls it. No, since I’m still carting around these dumb drains, I have my little bitty sling bag for a purse instead of my real purse, which happens to be fully stocked. Grr.

Dr Spiegel suggested I pop into the office of Dr Grimes, my infectious disease guru, since he’s in the same building. He was at another hospital but we talked to his nurse Rhonda. She took a lot of notes and said she’ll get in touch with him and they will get back to me today sometime. Absent the pathology report, we’re in a holding pattern. Dr Spiegel and I talked about Vanocmycin, the wonder antibiotic that has worked so well on me in the past. Problem is, it needs to be administered via IV, either in the hospital or through home health, and Dr Spiegel doesn’t think that’s necessary just yet. She did suggest adding a vanco-like oral drug to my current antibiotics, but Dr Grimes’s nurse Rhonda didn’t think that was a good idea. She said it wouldn’t add more protection and would make me feel sick. Guess we need to wait and see what we’re dealing with.

So the good news is this: I didn’t get admitted to the hospital. The lack of fluid means the infection, if it’s there, hasn’t set up shop to the extent that it had last time. It’s possible that the pseudomona is preying on my already-fragile but on-the-mend body and causing some havoc with the drain sites but not revving up the original mycobacterium. Those are all good.

I’m also healed up really well, considering what a heinous surgery it was. So healed, in fact, that Dr Spiegel couldn’t pry the suture line apart (hence the big needle). She and Nurse Sonia both seemed unusually pleased at how well I’m healing. So why do I feel so crappy?

 

 


Jerk

There once was a post about gratitude. About feeling it and showing it to someone who had done something that changed my life. About how I struggled to say thank you for helping me, for making things better. About how I wished there was a Hallmark card that says, “Hey, thanks a lot for saving my life.” Absent such a card, I don’t think I effectively conveyed that sentiment, but I tried, and as we all know, it’s the thought that counts.

This post is not about gratitude. It’s not about feeling or showing thankfulness. It’s about a whole ‘nother set of feelings, and there most definitely is not a Hallmark card for them. It’s about feeling betrayed and scared and frustrated and hopeless. And helpless. Lots of helplessness in there. Sounds like a great basis for a Lifetime movie, right?

I’m feeling all of these nasty things, and more. In addition to the emotional stew, I’m also feeling sick to my stomach. For real. As in, any second I may barf. Now, that particular sensation is one I’m very familiar with, and no, not because of all the heavy drinking I’ve done in my lifetime (close, but not quite). It’s because of the dynamic duo of oral antibiotics I’ve been taking for 221 days. Two hundred and twenty-one days. CCXXI days. So let’s just say I’m used to the all-day morning sickness, the pukey-all-the-time drudge that is life on long-term, hard-core abx.

Add to the stew and the roiling stomach the sleepless night that now has me feeling like a zombie on a bad day after a monstrously long night of searching for solace but finding none. That feeling of bone-weariness coupled with worry so palpable you can smell it. And taste it. Which does not mix well with the roiling stomach.

If I weren’t so tired and puny and upset, I would be mad. Really mad. But I’m not. It would be very easy to be defeated, to give up and stop fighting. To roll over and concede. That is very tempting right now. And I’m not one with a lot of willpower. Brute force, yes, but willpower not so much.

I don’t do any of those things well: the giving up, the acquiescing, the rolling over or the conceding. I’m not super competitive, at least not against others, but I really stink at those things. I have no desire to keep up with the Joneses or be the leader of the pack. I don’t need the latest and greatest gadget, the biggest house, the newest car. I like nice things, but they don’t drive me. I have a lot of pride, and it’s hard for me to say things like “you win” and “I was wrong” and “I thought I could do this but I can’t.” I’m much better at writing those ideas than expressing them out loud. Hence this blog.

As I struggle to process all the feelings coming at me this morning, and fighting through the fog that fills my brain and slows down my body, and going through the motions of the early-morning routine, one thought sticks out and gathers my attention: everything was going so well; at the start of week 3, I should be able to do more, to reclaim more. And the fact that I can’t makes me heartsick and nauseated and wish I could curl up in a little ball until it passes. I want my mama, but she’s gone, and I can’t conjure her up right now. I’m stretching and reaching to remember her voice, but all I’m hearing is static.

I’ve probably mentioned before that I’m driven. I like results and achievements and progress. I make a to-do list every day and attack it. I believe wholeheartedly in the principle of do the work first then with whatever time is left, play. I don’t idle well and have a hard time doing nothing. I need goals and milestones.

I should be reaching a milestone as I enter week 3 of recovery from a major surgery. Some progress has indeed been made: improved range of motion, increased mobility, and less pain. What I shouldn’t be encountering is a set-back. At the risk of sounding a little whiney, haven’t I had enough set-backs?

Something is going on with the right side of my body, and I don’t like it. I’m mad at my body. It has betrayed me, and it’s frustrating me and worst of all, it’s scaring me. The drain on my right hip hasn’t been working well since I got home from the hospital. It has leaked and collected considerably less fluid than its counterpart on the left. A theory was floated that the disparity between the two drains’ fluid collection could be because righty isn’t pulling its weight so lefty is taking up the slack. I like the other theory better: that lefty is threaded deeper into my body, which allows it to pull more, and righty is doing exactly what it needs to be doing for its location.

Regardless of theory, the fact is something isn’t right, both with the drain and the newly created breast. The right one had a divot on Thursday, that was deemed by the authority figures to be no big deal, part of the process. But now the skin all around the divot in an ever-widening area is hard. And sore. To the point that taking a deep breath is uncomfortable.

This is the thing about recovery that is so treacherous. It’s unpredictable and anything can happen. Things can be going well by all accounts and suddenly, out of nowhere, there’s a problem. One minute you blow a tire, and the next you’re careening over the cliff.

I hate careening.

If I could send a Hallmark card to my body, to express my current mix of emotions, it would be simple. Not a lot of words are necessary to say, you betrayed me. It would look like this: