Our Boat

Caloosa Spirit

Catalina 42 mkII

Log #95 While We Were Making Other Plans

When last I wrote anything here, we were heading north to Indianapolis for Christmas and family time. We did indeed have a delightful Christmas, especially since we were all together.

Family Christmas
Mike, Jim Lauri, Alice, Alex, and Mom

I had also expressed some apprehension about further tests regarding my lung condition, although I had been feeling quite fine with no coughing or fevers. Upon reporting on 12/17 to my pulmonologist how I was feeling, he was mystified, since the same-day CT scan indicated that the condition was really much worse. After another bronchoscopy (the biopsy from which blessedly showed no lung cancer), I was referred to an infectious disease doctor. It seems there’s a rare form of bacteria that may be causing the problem. Well, so much for a short stay in Indy.

So today, on my 60th birthday, I got to visit yet another doctor who wants me to start on an aggressive IV antibiotic treatment for this bacterial infection. Yay. This afternoon I got to spend some quality time at the hospital with a nurse/tech who installed a PICC line (I have no idea what the letters stand for) in my upper left arm. It’s something of a temporarily permanent IV port so that I don’t have to be stuck every day. Word is that I can do these daily treatments at home—well, let’s just say that Jim will be giving me these IVs. There are some very good reasons why I never went into the health field. This phase of treatment will last for two weeks; then I go on oral meds for several months.

Lauri and Alex joined us this evening for a celebratory dinner—perhaps my last for a while, since one of the antibiotics is likely to make me nauseous. I can hardly wait.

I forgot to mention that, rare as this bacterial infection is, it does have a name—Lady Windermere’s Syndrome. Presumably named for some lady-in-waiting in the long, long ago, the bacterium seems to hit slender, non-smoking women around the age of 60. Okay, so I hit the bull’s eye on this one. And I thought watching my weight and not smoking were supposed to be healthy. Well, maybe only until I hit 60.

Did I mention I would be nauseous? Yeah. Well, that’s the main reason I’ve written nothing here for over a week. It’s not like I’ve had nothing to say.

It turned out that when I got my first IV treatment a week ago I was told that, no, I wouldn’t be able to do the treatments at home—something about insurance not covering the cost of one of the drugs in that case. Lord knows we certainly don’t want that! So each day (including weekends) Jim and I have gotten up between 6:30 and 7:30 AM so that he can drive me to the infusion center about 30 minutes away. We sit for two+ hours (me in a comfortable recliner, him in an uncomfortable waiting room chair) while I get two different IVs dripped into my PICC line. Then we return to my mom’s apartment where we’ve been staying, and I quickly eat some lunch while I can—usually chicken noodle soup or some other comfort food. Then I sleep for a couple of hours, since the anti-nausea drug they’re giving me makes me sleepy. Then I eat something bland for dinner (hopefully I feel like eating something), then to bed by 8:30 so I can get up and do it all again the next day. Jim has been a saint in chauffeuring me, fetching for me, and doing most of the food preparation and clean-up.

The other day the infectious disease doc told me he wants us to stay for another couple of weeks after the IV treatments are done to get another CT scan to check on the progress of the treatment. So we won’t make it back to Caloosa Spirit in Marathon until sometime next month. Fortunately, good friends Dawn and Bruce on Ladyhawk are keeping an eye on the boat for us, but they’ll soon be leaving for the Bahamas. Boot Key Harbor is a very safe place, though, so we’re not worried. Mostly, we miss the weather and feeling at home. This morning the thermometer read -20 degrees. Upon getting into the cold car and shivering our way to the infusion center, I can’t help inwardly screaming, “We retired and went south to avoid all this!” This is the worst possible season to be stuck here! I know, I know, we can expect no sympathy from our northern friends, but maybe our southern fellow cruisers can sympathize. Our son Mike, who lives in Sarasota, totally gets it.

Change has come.
We’re now on a new path.

So according to the doc this morning I have just two days left of the IV treatments. Let me just say that this has been two of the longest weeks of my life. A couple of days ago, though, I got cut back to just one IV, since I’ve now developed a ringing in my right ear. I was warned that one possible side effect of one of the drugs was permanent hearing damage, but that was virtually unheard of in treatment of two weeks or less. Well, I got the virtually-unheard-of bacteria, so why not the virtually-unheard-of side effect? The doc thinks, though, that the ringing will probably go away. We’ll see. I don’t think my hearing has been significantly damaged, and I could probably get used to the ringing if necessary.

In a few days I’ll start on two more oral antibiotics—making a total of three—for several months. I think I forgot to mention that this bacterium is a distant relative of tuberculosis, and the treatment is somewhat similar. I’m desperately hoping I’ll feel better on the oral meds. This almost constant state of malaise and enervation is really getting old. On 2/5 I’ll have another CT scan to check the status of the infection, after which we hope to be released to head south.

By the way, I’ve learned that Lady Windermere wasn’t a real lady at court. (And that PICC stands for “peripherally inserted central catheter”. Ain’t Google great?) Lady Windermere was a Victorian character in an Oscar Wilde play who supposedly demonstrated a high degree of “fastidiousness” (read: she didn’t spit), and somehow this bacterial infection got associated with her. Go figure. Well, I make no apologies for my “fastidious” behavior in refusing to spit, and I think it’s a stretch to name this affliction after the Oscar Wilde heroine. Whatever, I’m just eager to be rid of it.

Fair winds and a faithful wake until next time,
Alice & Jim Rutherford
s/v Caloosa Spirit

Posted Wednesday January 21, 2009

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  1. Alice,
    Eeegads this sounds awful. We are so glad you seem to be slowly coming out of the woods. Get back down here to FL, although you aren’t missing any warm weather. We’ve had hard freeze warnings and a high in the mid 40s yesterday. Of course, Marathon would be a little warmer than St. Pete. Best to you both,
    Kitty and Bob
    Kitty Bennett    01/22/2009 05:30 AM    #
  2. So sorry to hear of all your health problems. Hopefully the worst is over. We had a hard freeze here last night and the last week has been quite chilly so you’re not missing great weather.My best wishes for a full recovery. Would love to see you both again. Keep in touch. Love, Fran
    — Fran    01/22/2009 12:27 PM    #
  3. Hello Alice, I can sympathize with you. I had 10 rounds of chemo and it was crueling toward the end of treatment. Hang in there….it will get better. We live for Key West and the Exumas the middle of February. Hope to run into you guys this spring. Judy and Steve
    — Judy and Steve Tedford    01/26/2009 12:33 PM    #
  4. Glad you’re recovering and sorry you had such a horrific time. The good news is that you’ve both done your blue-hair health penance and should have fair skies and smooth sailing from now on! Happy 60th and we’ll pray for a speedy recovery and no side effects. We have friends in Marathon who could possibly keep an eye on your boat. Let us know.
    — Jay and Nancy    01/27/2009 08:23 AM    #
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