Renal Cell Live!

Sunday, November 18, 2007

Out of the Mouths of Babes

Harry's tatendix
I've mentioned before that Saint H works in a child care center at OSU. Friday he got a packet from the office containing get-well cards and drawings from the kids.

The teacher added Jamie's explanations to her drawing: "The doctor cutting out Harry's tatendix", on the left, is wearing a "mask". Saint H is smiling on the table: "These are the straps. They strap his legs down so he can't move them when the doctors cut him." The nurse, at the right, wears a "stethoscope" and carries an "otoscope". She says, "Don't touch his intestines, they have stuff on them." She has 2 boxes of stickers. To the nurse's left, "Jamie visiting Harry" says "OK". To the nurse's right, another one of the kids, Enrique, is also visiting.

I laugh every time I see it, especially for the wisdom of the intestines "stuff." Saint H laughs too, albeit rather gingerly.

Many of the kids' parents are on the OSU medical staff, so I wouldn't doubt but what "stethoscope" and "otoscope" fall into Jamie's vocabulary.

The doctor must have been pretty good - I didn't see any strap marks.

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Saturday, November 17, 2007

Comedy of Errors

Yesterday I went to Cleveland, accompanied by my friend and sister Mary (standing in for Saint H, still recovering at home). We entered into an unexpected farce almost as soon as we arrived at Taussig.

First: As we walked back to the lab for bloodwork, my nurse said, "Your labwork is already done. Are we doing something else for you?" "What?" "Your blood was drawn at 8:00 this morning." "No, I was still at home at 8:00 this morning. I just got here." "But we've got results in your record; I just checked."

When I sat down it was clear that my Mediport hadn't been accessed. Then she couldn't find the prepared label set for the specimens. It was clear that someone had grabbed my labels by mistake early in the morning. So one of the other nurses got on the phone to a problem resolution group, wiping out the first set of results so I wouldn't get charged for 2 sets of labs, and trying to find out whose blood had been mislabeled.

Second: I checked in for my C/T scan. The nurse said, "There's been a mixup in your labwork." "I know, but I think we got it straightened out." "Unfortunately when they submitted your samples just now, the paperwork wasn't marked for rush processing. We can't do your scan without knowing what your creatinine level is, so we're going to take a small sample and run it over for instant processing." As the lab is quite a distance away from Taussig, "run" is the literal truth: blood in a syringe rather than a prepped tube has to be processed within 3 minutes of a blood draw, or it will clot and be useless. The run was accomplished, my creatinine level was acceptable, and the scan was completed. Had the C/T nurse not been heads-up, I'd have had to wait as long as 4 hours for the lab results before I could have my scan.

Third: I checked in for my appointment with Dr G. The registrar said, "Your insurance is [XXX]." "No, my insurance is [ZZZ]; has been for years." I pulled out my card to show him. "Have you heard of company [XXX]?" "Yes, it's my husband's insurance, but I have my own." The registrar tried to correct my record and called in a supervisor; I suddenly remembered our trip to the Cole Eye Institute in October. My vision coverage is on Saint H's policy, so I told the registrar (at least it was starting to make sense). Upshot: whoever registered me at the Cole put an end date on my own insurance coverage and replaced it with Saint H's insurance. That was fixed, and I went on to my appointment.

Fourth: Dr G was booked to attend a conference all day on the CCF campus, but his clinic calendar wasn't blocked out and he ended up with 14 patients scheduled. Most were rescheduled, but he kept my appointment anyway.

Fifth: I needed a refill for Nexavar. My delightful nurse Shari somehow managed to call in a refill for Sutent instead, but the pharmacist caught it. Thank goodness! Their records now note that I'm allergic to Sutent to keep this from happening again. (I'm not sure that "allergic" is the right term, but "severe internal bleeding" probably takes up too much room).

The results of all this comedy: stable disease; hemoglobin levels 11.4, creatinine down to 1.0, white cell count good, all systems go. Considering that I might have driven all the way up there to have someone else's lab results, no insurance and possibly no appointment, leaving with the wrong medication, things turned out very well!

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Thursday, November 15, 2007

Blogger Stats Serendipity

When I make a posting I generally check my (unimpressive) stats. One of the things I look at is the "Referrers" listing. I have always expected that mostly family and friends read my blog (borne out by the high percentage of repeat visitors), but I always wonder how the uninitiated find me. If there's a search query listed, I can follow that link. Clicking on the search link gives me the same results. When the search results display I can see where my blog shows up, and what triggered its appearance in the results list.

The other day a search query was shown; I don't remember what it was exactly, but it was a fairly non-specific request including "pain" and "kidney". I know there were over 85 pages of Google responses to the query, because I skimmed through that many before I gave up, not having seen my blog's entry. I hope that the questor found something useful in all the search results retrieved ...

I just checked another search query from my referrals, this one for "how common is it to have eye cancer and renal cell". My posting "End Game" showed up, as well as this rather more useful abstract on PubMed.

The rather scary sentence in that abstract, "Newer systemic treatments available for renal tumors, such as interferon alfa, may lead to ocular side effects including retinopathy" gives one pause, doesn't it? These thoughts come to mind immediately:
1. I think I'd like to read the article in full
2. I'm glad Dr G keeps up with his research, because he certainly knows about it
3. I think I'd like to find a good way to keep up with research myself

I guess I was "righter" than I thought when posting earlier. The longer we take these new drugs, the more we learn.

Saint H is sleeping a lot and recovering nicely. What a relief!

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Tuesday, November 13, 2007

What Goes Around, Comes Around

Friday night Saint H went to bed early, saying he was tired. He drives 100 miles round trip every day to work, so by the end of the week he usually is worn out. I didn't think much of it.

Saturday he was up for a bit, then complained of a stomach ache and went back to bed. He stayed there all day, occasionally getting up to try to go to the bathroom, sometimes fevered, sometimes chilled. He eventually ended up pacing the living room in obvious discomfort. Couldn't I call the hospital? Oh, no, he just had a stomach ache. Was he sure that I shouldn't call the hospital? Upon reflection, he decided that I could. He hadn't eaten since noon, and the pain was centralized and steady.

Fortunately our doctor, Dr MC, was on call. After talking with me and with Saint H, his verdict was, "Get to the ER. This could be diverticulitis or worse." So, off we went. Saint H told the nurse that his pain was, oh, maybe a 2 on a scale of 10. I told her not to believe him; she said, "You are obviously in pain. I'd rate it between a 6 and an 8" and went off to get pain meds.

After a couple of hours and an x-ray, he was set for a C/T scan. We are, of course, familiar with the 2-hour ritual of taking the internal contrast; he tried to get me to go home. I told him I might as well stay to find out what was going on, right? (Gosh, he doesn't like Readi-Cat any more than I do! What a shock.) When the results came in, the ER doc came in and announced, "You have appendicitis. We're admitting you." Saint H responded, "You're kidding. Right?" "Nope. It's very inflamed. We'll be getting you in to surgery as soon as we can."

By this time it was about 3:00 Sunday morning. He tried to get me to go home again. I told him I was going to stay until he went to surgery and returned to his room. At noon, he was on his way to the operating room. He was back in his room by 2:30 or so, and I went home for a nap. I got to bring him home Monday afternoon, with his 3 little incisions from the laparoscopy (in face of my 14" scar and my 8" scar, I find that pretty annoying).

Funny, all these times that I've been in the hospital I've tried to get him to go home, and he's stayed in spite of me. I've told him how frustrating it is to know that he's uncomfortably perched in a chair watching me sleep, but I know he didn't understand until now.

God knows I now understand that compulsion to stay, to watch him sleep and heal. I could not live without him.

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Thursday, November 08, 2007

I've been picked!

I've never been asked to do a blog meme, but yarmando picked me to "open the book you’re currently reading to page 161 and read the fifth sentence on the page, then think of 5 bloggers to tag."

I'm reading several at the moment so I picked up the closest one that wasn't a cookbook: Owen Gingerich, The Book Nobody Read: Chasing the Revolutions of Nicolaus Copernicus.

"I explained to my hosts that in addition to trying to figure out what to do about the faulty facsimile, I hoped to explore the Wittenberg University archive."

Long ago at Indiana University, I was privileged to take Analytical Bibliography, taught by the fabulous Josiah Quincy Bennett at the Lilly Library. My first professional job was in a rare books and manuscripts repository. I decided to move on from that, but am still easily seduced by books about books. This one is a challenge to Arthur Koestler's claim (in The Sleepwalkers, 1959) that nobody read Cupernicus's De revolutionibus. The author tracked down 600 extant copies of first- and second-edition to see the annotations.

So who do I tag? I don't know many bloggers and I doubt many of the ones I know read my blog. Yarmando, I'm borrowing a couple of your friends, whose blogs I read, dammit. That'll get me a few.
1. Swanknitter
2. Micah
3. Matt


Big Brother

ColaAbout six months ago my friend Judy called to let me know that she had a crop of kittens in her yard. Two, she said, were long-haired torties. She knew, of course, that we'd lost Maggie in January. Given that I'd had a dream the night before about a long-haired tortie, I thought I detected a sense of inevitability about this.

Six weeks ago she managed to catch one of the torties. We picked her up and moved her temporarily into Saint H's bathroom; she spent 3 days curled up in the soft-sided carrier in the bathroom sink. Saint H suggested naming her after a bathroom fixtures company in honor of her chosen resting place; we compromised on "Cola."

Marmaduke ignored her quite successfully for about four weeks - after all, she wouldn't venture out of the bathroom, so she wasn't posing a real problem. Then she started coming into the kitchen; and she progressed to the living room; now she's been all over the house except for the yarn room. (For some strange reason I shut the door ...)

He continued to ignore her for a few days. She wanted to play with him. He didn't want to share his toys. She played with them anyway. He ate her food. She ate his food. They co-existed very well, but I could tell she wanted him to capitulate.

Last night, he marched up to her and started grooming her, so I guess he's decided he'll be a good big brother after all.

When do I tell him about Cola's sister, who's waiting in the wings in Judy's basement?


Tuesday, November 06, 2007

Funny, You Don't Look Sick

I'll admit that some 3 years ago, when I began this odyssey of metastasis, I looked as sick as I was. Weight loss, anemia, fatigue, and uncontrolled cancer added up to a shattered physical being. I had no energy, I couldn't eat, I slept much of the time, and simply couldn't be bothered with much beyond the basics. Saint H quietly took on all of the laundry, the cleaning, and some of the cooking; I sat in my big red chair and existed.

Since then, I've gained weight, conquered anemia, and my cancer is successfully controlled for the time being. My hair, moving from normal to white to gone and back again, looks much as it did 3 years ago. I now look much as I did 3 years ago, and feel better than I have for years. I'm able to maintain our house and run necessary, normal errands along with doing some volunteer work. But I am definitely not the same person physically. Stamina went by the board along with upper body strength. "Normal" days include fatigue, joint pain, and mild depression.

A couple of weeks ago I backed out of going on a geology field trip because it was cold, windy and raining. One of my fellow students (a very vigorous 75-year old) was pooh-poohing at me over not going - "Oh, come on, it's just a little rain." "If I get cold it's just too hard to warm up again" was what I felt I could say without delving into too much background, and she looked at me like I was from Mars.

Last summer I heard an older couple harrumphing at a young woman getting out of a car legally parked in a handicapped spot. "How on earth did she get that sticker? I'll bet she lied. That's disgraceful. Those parking spaces are there for people who NEED them." Well, my, aren't we judgemental? Appearances can be deceiving and most of us try to look our best, after all. That being said, it's not for someone else to judge another's fitness by appearance alone.

I try to do as much as I can without pushing beyond my known limits, and I try to be healthy enough that my companions won't worry about me when we're out. I would give so much to NOT know so damned much about my health. I would give so much to NOT worry about my fitness to perform. But at the same time, I don't feel I should have to wear a little sign "I HAVE CANCER" to make people think twice about making comments or judgements.

Maybe it's just the weather - cold and windy; I'm barely moving today and my "best effort" is going to be pathetically small. Overall it's been a bad day and I'm sorry to unload here. But this has bothered me since diagnosis and it's not likely to go away.