Saturday, April 30, 2005

Medical Mysteries of the World

(228 Days of Leukemia Treatment Left)

Thanks to all of you who responded so kindly about the wonderful journal entry penned for Kendrie’s site by Julianna Banana. It appears that I somehow missed the announcement that Julianna’s dad Terry’s birthday was this week, so if you have a second, hop back over to Julianna’s site and wish him a Happy Birthday. I’m not sure, but I think he’s 29 with 7 years practice.

So, getting back to the medical conundrum that IS my husband, let me catch you up to speed on his latest:

As you know, he went to the hospital for a routine follow-up ten days ago, and wound up admitted for surgery to remove the Blob-O-Crap that had developed in his post-surgical wound site in his lower leg. When I last left you, we were awaiting culture results to make sure he wasn’t growing any tropical diseases in there, and planned for him to be home in a day or two.

While he wasn’t harboring flesh-eating bacteria, it turns out that he DID, actually, have a staph infection in the site. And not just any staph infection, but a MRSA infection that is resistant to all front-line antibiotics such as penicillin. (Way to go, Blaine! Never settle for ordinary!)

Treatment for this type of infection is SIX WEEKS of twice-daily, heavy-duty IV antibiotic infusions. So he wound up having another surgery, to clean out the wound site again and have the surgeon nick off another portion of the tip of his leg bone …. just in case the staph infection had already spread to the bone -- which would be terribly difficult to treat -- they figured better safe than sorry and just sliced off another sliver of the bone. If he ever had considered donating his body to science, I’m afraid at this rate there won’t be enough of him left!!

They also inserted what is known as a PICC-line in his arm, a catheter of sorts that threads up the inside of his arm to the general area around his heart so he can administer the medication at home. The home health nurses are coming every few days to change the dressings, but it’s really a pretty easy set-up, just time consuming.

And that’s where he stands now; although the six weeks of IV therapy is, according to him, seriously cutting into his therapeutic post-op fishing time, his leg is feeling much better. I think with the Blob-O-Crap gone, the recovery will move along much more smoothly. But Blaine has already told me that he won’t be going to his follow-up appointment next week without an overnight bag packed!

So the entire process of events has left me with a few medical mysteries that I am unable to solve ………… maybe some of you have answers you can share:

**The fact that he not only has a staph infection, but has one that is resistant to 99.9 percent of all antibiotics ever manufactured --- does that make him an over-achiever or an under-achiever?

**Did the nursing staff really think they were helping him, when he asked for a razor, by giving him a surgical razor that ripped most of the hair out of one side of his cheek?

**Does the fact that I didn’t think to take him a clean pair of underwear when I went to pick him up mean I am a bad person, or just slovenly and thoughtless? Or how about the fact I thought to bring him a clean t-shirt, but then forgot and left it in the car?

**How can a fifteen minute exam lead to seven days and nights in the hospital, two spinal taps and a PICC-line insertion?

**When the doctor tells you, “We’re no longer worried about him losing his leg” ….. um, does that mean I *should* have been worried about that at some point? Because nobody told me to be!

**Why on earth, when I’m standing in the main lobby of the hospital with Blaine’s fresh cup of coffee from the cafeteria in hand, and he’s on the 9th floor, eagerly awaiting said cup of coffee, would there be a fire alarm at that very moment, rendering the elevators inoperable and requiring me to climb nine flights of stairs? Is that some kind of cruel trick of the Exercise Gods?

**Who decided Blaine must have his home-IV at 9 am and 9 pm every day, when the medication has to be removed from the fridge four to six hours beforehand to warm up to room temperature? Is anyone aware of what time that is???? And the infusions themselves each take about an hour and a half, so now he’s REALLY griping about the loss of fishing time.

**And one final medical mystery: Can someone tell me why, a reasonably bright person such as myself, who has a relative grasp on most of the daily functions necessary to lead a normal life, is apparently completely unable to tell time? Because see … here’s the deal. When I talked to Blaine’s doctor Tuesday night I asked him what time Blaine would be released from the hospital the next day. First of all, I think the medical staff at that hospital must assume we have some “in-name-only” sort of marriage, since I left him there by himself for the entire week he was in the hospital, having bones sliced and blobs cultured, undergoing spinal taps, and without bringing the man a clean pair of underwear. Never mind that the hospital is three hours from home and I have three children here, who on a daily basis, make constant, completely unreasonable demands for food and parental care and what-not.

So, anyway, the doctor told me Blaine would be able to come home by noon. “Noon, you say?” I double-checked, “as in 12 o’clock?? ….. because I have one girlfriend who is riding up with me, who has agreed to have someone watch her own children so she can follow us home in Blaine’s truck so we don’t have to leave it in Augusta, and another girlfriend who is not only picking my kids up from school, but offered to bring us dinner that night when we get back home. So, you said NOON, right?” Yes, Mrs.-You-Must-Really-Hate-Your-Husband-To-Not-Even-Show-Up-At-The-Hospital-For-His-Surgery-Escoe, he’ll be ready to go home by noon.

So the next evening, when we were walking out of the hospital at 6:15 pm, I’m wondering just where MY definition of noon and the MEDICAL definition of noon have swerved paths. My girlfriend Renee and I were there by noon …… Blaine was ready to go (more than ready, practically pacing the halls) yet it took over six hours to line up his home health care and get him checked out. Given as I had over six hours to think about it, this is the best explanation I can come up with:

(ahem::clearing throat::) When the doctors said NOON, what they really meant was HIGH NOON, as in, the sun at its zenith. Which, if you lived in Australia, would actually be midnight our time. And as everyone knows, midnight in Greek is referred to as “Illuminos”, which means “to brighten” and as is perfectly obvious, most people brighten up at the end of their workday, which for the average American worker, is 5 pm in the evening, so if you add the hour for the recent daylight savings time, THAT explains why Blaine wasn’t released until after 6pm. I mean really, how could I have been so stupid? It was SO blatantly obvious!

So anyway, my poor girlfriend Renee, who had told her babysitter (thank goodness for Grandmas!) that she would be home by 4pm, didn’t get home until almost 10pm. My poor girlfriend Kelly, who thought she was going to have my kids for an hour or two after school, not only got stuck watching them for seven hours, she had to feed them and do their homework with them to boot. The home health nurse came to our house to show Blaine how to start the infusions and didn’t leave until after 11pm. Then, the next morning, I had to get up at 5am to take Kendrie to Atlanta for her monthly chemo appointment …….. oh yeah, that’s right, we’ve got a kid with cancer here, too!

Funny, but that’s almost how it felt last week. Her nightly chemo was practically an afterthought each evening, after talking to Blaine and his doctors on the phone to find out what was going on there …. Fortunately, her visit went very well. This was one of the Every-12-Weeks appointments, meaning she also had a spinal tap (something else she and Blaine have in common now) in addition to her IV-medication (hey, yet another thing!)

Once again, her ANC was high (1900’s) but despite what I *thought* would happen, her oncologist did NOT up her dosages of chemo. Well, let me rephrase that. ALL of her chemo dosages were upped, but due to the weight/height gain that she has had in the past three months, and not due to her consistently high counts. The chemo medication amounts are formulated based on the size of the patient, so every three months they review her chart and recheck her growth, to see if she needs more drugs. Lucky us, this time she does!!! (The sarcasm comes into play because that means she’s on a higher dose of steroids this month -- woo hoo!)

I swear, the night-time medication ritual is often complicated, based on what day of the week it is, and is it a steroid week, or a week day or a week end, or a spinal week, or an oral methotrexate week ….. and just about the time we get it all figured out in our heads and are no longer obsessively double-checking the medication chart on the fridge ….. they go and increase the dosages!!! (OK, I’m kidding; we will obsessively double-check the medication chart until she is finished.)

And that rounded out our week in a nutshell. Blaine is suffering the common side effects of these high-dose antibiotics (night sweats and nausea ……. now he knows what it’s like to be peri-menopausal) and Kendrie is not yet launched into her Steroid Personality From Hell Behavior …. We’re battening down the hatches and hoping for the best. As for me, my only problem is the back strain I have from carrying around this debt of gratitude to Renee and Kelly --- you girls rock! Thank you! What would we have done without you both????

Thanks so much for checking in on us. I really enjoyed all the messages in the guestbook last week and hope you are all doing well, also!

Take care,

Well, I was feeling a little hungry (steroids will do that to a kid!) and I knew Mom was cooking dinner and probably wouldn’t let me eat anything. So I told Dad that Mom said it was ok for me to have a snack, and then told Mom that Dad said it was ok, and then I ate me some Pringles before dinner! Alas, I heard Mom make a smarmy comment to Dad about “Why do I even bother cooking when you let them have snacks before dinner?” and I knew the jig was up. Sure enough, they caught on to my treachery. Damn! Parents united are never a good thing! Divide and conquer, I'm telling you, divide and conquer!

BEST THING ABOUT HAVING CANCER TODAY: It was raining here all afternoon and I was still feeling a little punky from my clinic visit, so I curled up on my bed and took the best nap ever! And because of the rain, I didn’t even miss any good outdoor playtime!

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