Renal Cell Live!

Tuesday, January 30, 2007

Stable Once More

Once again, a drive to Cleveland Clinic for yesterday's appointments and scans. Once again, the verdict is "stable disease." Sure, I'd like to see more reduction, but I know the side effects could be unbearable if we increase the dose, and stable disease on a half-dose is pretty encouraging. So we'll accept these results and hope they continue for the nonce.

Usually, Cleveland Clinic's scheduling department makes my appointments. The appointment notification comes complete with two bottles of the chalky delight known asReadicat, a barium sulfate contrast medium used with C/T scans. This last time, however, no Readicat - was I to be spared? Not likely; all these years of scans have made me unwillingly knowledgeable about the procedure. So, I called and was told to come into the scan center an hour or so in advance to pick up a substitute.

I don't know what the substitute is - probably also barium sulfate in a different medium, appallingly mixed with a diet drink flavoring that does nothing to disguise the taste. It's water soluble so it gets to work quickly. Unfortunately it made me quite sick to my stomach - the term "gut-wrenching" has taken on a whole new meaning - but 18 hours later I think I'm finally done with the stomach cramps. Much as I don't enjoy Readicat, I much prefer its chalky texture to the dilute horror I worked with this time.

We lost our wee Maggie on Saturday. Those of you who have children (furry or otherwise) understand how I feel right now. I know that the ache won't go away, ever.

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Monday, January 22, 2007

"When I'm Done"

At my last Zometa infusion, in the next cubicle a young woman's father visited with her during her chemo treatment. They were busy discussing plans for an upcoming family vacation in July, and suggesting possible future trips. Father mentioned an Alaskan cruise taken recently by a family friend; the young woman responded enthusiastically, "I really want to do that when I'm done!"

If a cancer is caught early, and there's an appropriate treatment available, and the patient is willing and able to pursue that treatment, is it possible to be "done" with cancer? My friend and sister C3 (not to be confused with my friend and sister C2) caught her breast cancer early, underwent a radical mastectomy and aggressive chemo, and has been free of breast cancer for nearly 12 years. She's had a couple of surgeries since, one removing a gland in her neck (negative on all counts) and one removing a growth on her cheek (positive for squamous cell). She's vigilant about checking on possible problems and works with her doctors to make certain that she, and they, are on top of things.

Cancer may go into remission, or be controllable through medication and treatments, but I don't think we can any of us ever relax that vigilance. I can think of renal cell as a chronic condition, something like diabetes or high blood pressure, that is just part of my life. So I'll probably never be "done" with it. That being said, I hope I'm "done" with being controlled by fear.

It's snowing here, at last; we got a couple of inches yesterday. Up to this point we'd gotten under an inch for the entire season - though if we'd gotten the equivalent in snow of the rain that we received in December, we'd still be digging out! It's great soup weather, hooray. Nothing quite like the perfume of soup magic, permeating the house and sealing it against winter's chills.


Tuesday, January 16, 2007

Eavesdropping - My Fellow Patients

I go to the JamesCare facility on Kenny Road for Zometa infusions, Aranesp injections, and routine bloodwork twice a month. JamesCare is a wonderful place, beautifully decorated and full of great, attentive staff. In the 11th floor infusion center, friends and loved ones are welcome to sit with the patient during treatment. The cubicles, each outfitted with a cushy recliner and with its own window overlooking OSU west campus, are separated by curtains or frosted glass doors.

It's a very comforting environment for those receiving treatment. It's also nearly impossible to avoid overhearing conversations from one cubicle to the next, unless one has succumbed to the comfy recliner and fallen asleep.

  • An elderly man arrives alone for his first round of chemo. He has no family, he tells the nurse, and he came by taxi. She persuades him to call his pastor for the ride home. She offers to telephone his pharmacy to make certain they'll be open long enough for him to pick up his anti-nausea meds; it's Friday, and if he doesn't get them today he'll face a long, uncomfortable night. He sounds bewildered and frightened, and I weep for his solitude.
  • A man tells the nurse, in a tired, gravelly voice, of his constant pain and fatigue. A woman, who I take to be his wife, assents quietly and offers more detail. I sense that he's uncomfortable, almost embarrassed, to admit how much pain he's in.
  • A woman shares pictures of her grandchildren with the nurse and jokes constantly with the man accompanying her. He's either her husband or a long-time companion; I can hear the echoes of long, happy years together in their voices.

  • I don't have much pain and my fatigue has lessened dramatically with the ferrous gluconate supplements. As I'm only doing medications and not chemo, I'm usually there for between two and four hours, depending on how quickly lab results come back; most others are there for the full day. And I'm never alone, even though I may drive myself there without company. When I overhear their conversations, I know how lucky I am. It's certainly the cure for self-pity.

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    Thursday, January 11, 2007

    Much of Nothing

    There has been little to write about. We returned from my sister's retirement (I cried, of course) Thursday last week and I've had little time to recuperate from traveling. Friday I had an Aranesp injection scheduled and, to my dismay, my hemoglobin levels were low enough to need it. I wish I knew exactly what triggers the ups-and-downs. Saturday I gathered with friends for a belated Christmas celebration. Monday I accompanied Saint H to an appointment for the beginnings of extensive dental work; he probably could have driven himself home but would rather not have found out otherwise.

    So, three trips to Columbus in 4 days on top of travel. I feel wrung out; Tuesday and today have been stay-abeds. I have caught up on some emails and read friends' blogs. I will have to get motivated soon; it's too easy to feel small and sad right now, and I don't think that's good for me. And having written this I think I've shamed myself into action - not sure what I'll pursue but I can't just sit here.

    Monday, January 01, 2007

    Happy New Year!

    Yet another new year - where does the time go? From my view, 2006 was a pretty good year, so let's see what this one has in store.

    We're preparing to fly off to St. Louis tomorrow, to attend my sister's retirement from Air Force civilian service at Scott AFB. She's worked in Air Force public affairs for 30 years. She started working for the Air Force right out of college and, except for a short time working for the Army Corps of Engineers, spent her entire working career with them. How many people stay with an employer that long now? I'm sure that information is somewhere on the Department of Labor's Bureau of Labor Statistics site ...

    Of course Saint H and I have both got slight colds, and are taking Airborne tablets - we can hope it makes a difference as this is the worst time of the year to be exposed to something unsavory in the air. Airborne reminds me of nothing so much as Fizzies drink tablets from my childhood - if only there were a root beer flavor, then the comparison would be complete!

    I've started getting tax information together (ugh). Yesterday I added up all my "medical mileage" for the year. Wish I had known prior to 2006 that mileage for doctor's appointments, hospitalizations, and prescription pickups is deductible - in 2005, I was in Cleveland every other week for 6 months, but it's too hard to go back and reconstruct that now. At 258 miles per roundtrip, that would have been considerable. On the whole, though, I'd rather not have to be racking up those miles, but if that's what it takes to keep going, then I'll do it.