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.


17 Comments on “Stop the ride: I want off!”

  1. Barb Fernald says:

    I don’t even know what to say. Clearly it’s time to switch Gods, because the one you have is not playing by the rules.
    This is scary stuff. I just put the tennis ball back in my front pocket, so I will be thinking healing thoughts about you all day, and I’ll pray to whatever God will be listening (and playing by the rules), to give you a break and let you get on with healing from this mess.
    I know we can only live life in the moment we’re in, but I keep hearing the words of a friend who was dealing with Parkinson’s disease who said, “How do you stay in the moment when the moment really sucks?” I wish I knew the answer to that, then I could tell you. “Hang in there” just doesn’t seem to cover it today.

  2. Michele says:

    Shit.

  3. Susan Christopherson says:

    Nancy, this is just not fair. I don’t know the right words, but the right words might include some profanity. Serious profanity. Sorry just isn’t enough. I want to help…what can I do?

    • Leanne Kuntz says:

      Nancy,
      Speechless…….. My heart aches for you and what you are going through. I’m still praying hard for your full recovery. Don’t lose hope and keep writing!

      Hugs, Leanne and the rest of the Kuntz’s

      • Thanks, Leanne. Payton got Sammy’s note today and that is the sweetest thing I’ve seen in a long time. Tell him he made my day. When P asked if I wanted to read it, I said of course and am glad I’m so nosey! I’d have hated to miss that.

    • Keep praying and start cussing. Just knowing that you’re there, thinking of me and smiling that sweet smile help me a lot.

  4. Lisa Wheeler says:

    Hang in there girl!!! I had that two yrs. ago on my face it truly does suck but I got through it and your tougher than me and you will too!!! God knows you can too and he never gives us anything we can’t handle but he has given you enough it’s somebody else turn right? Love you take care your in my prayers daily have a good weekend!!!

  5. SusanP says:

    Well that is not the icing on your ‘cake of a week’ you had hoped for. I am so sad that you are having to deal with all of THIS mess!! But deal,you must. You have to just keep hanging in there and knowing that we are praying for you. Keep us posted. Love, Sus

  6. I have no words of wisdom but will help you come up with new curse words because this is 9^%)(^& and it really )&&^%%^ to #$^*()*^&$. That little freakin’ *(%^$^&!

    Love, Cyn

  7. Cyn, you are a good friend! I appreciate your efforts.

  8. […] Remember George Jetson? And his ill-fated stint on the treadmill? And him begging his too-cute-for-him wife to get him off the crazy thing? I know how George feels. I’ve never been a fan of the treadmill in general, much preferring to get my cardio fix outside or slog my miles on the elliptical, but this figurative treadmill I’m on now is the pits. Stop the ride, I want off. […]

  9. Hannah Parriott says:

    This staph infection is deadly and can and does kill humans and animals. In fact, this very thing happened to Jill Moss’ most beloved white Samoyed, Bella. Jill lost Bella to this staph infection less than a year ago. It prompted Jill to take serious action and bring the knowledge of this deadly strain of bacteria to the world so that other pet owners and people would not have to suffer the loss she has. Jill has instituted the Bella Moss Foundation. ‘

    My web-site
    <,http://www.healthmedicinelab.com/hip-flexor-pain/

  10. […] issues. All aspects except the mental game. I suck at that part. Give me the worst-case scenario (mycobacterium fortuitum, I’m talking to you) and I will slay it. Give me a long, difficult road on which to travel, […]


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