It’s our newly-adopted Indian name. Here’s the latest. Yesterday marked a sad day for us as we said goodbye to Maggie’s law office. August 4, 2008, the first day in her new digs, until yesterday. Actually, October 15th was the day we shut it down per doctor’s orders. It has been sitting empty, a sad memorial to a brief, but much celebrated, career as a lawyer. Yesterday Flo and Sami sealed the deal by delivering Maggie’s office computer to our house. The new guy, the squatter, came to her office today to sit in the chair we bought behind the desk we picked. We wish him luck. But the saga is over… or, for at least now, is on hold.
Her pain has grown considerably worse lately. Yesterday, Maggie was forced into shallow breathing to avoid sharp stabs of ouch. She walked around in a crouch, if she walked at all. She stays in good spirits but is clearly wearing her tough face. She’s been going through the bags of feel-better juice much faster, too, but it doesn’t seem to be fixing the problems. Suffice to say, Sunday night was a loooong night.
Late yesterday she took a steroid pill in hopes that it would help. Thankfully, it worked; the pain ratcheted down a few notches. We followed with another four hours later and another this morning. Today she’s walking mostly upright and can breath normal again, well, normal as it’s been for the last number of months (no deep breaths and definitely no yawns.) While steroids bring some immediate and much needed relief, they are merely a stop-gap. The real beat down will hopefully come this Friday.
Steroids have provided miraculous relief for us, which is in stark contrast to the perception of those of us who grew up in the 70s and 80s when anti-steroid media brainwashing was probably at its peak. We’ve seen them to be invaluable as an anti-inflammatory and they have definitely alleviated tremendous pain. Unfortunately, steroids, like standard chemo treatments, are essentially bullets with a decaying effect.
Steroids cause the body to create more cortisone which reduces swelling which, in our case, reduces the pain from Maggie’s diaphragm rubbing against her lungs. However, the body is frustratingly adaptive. The adrenal gland, the maker of the cortisone, detects the excess in the system and halts natural production. Whoops. The resultant lack of cortisone creates an even worse problem which presents as elevated pain and discomfort. According to Dr. Loukas, a person with too little cortisone “just feels bad.” The answer seems obvious – take a steroid pill. Then the cycle continues and, unfortunately, spirals rapidly downward.
The next step, we’re told, is to add a steady but minimal dose of steroids to our already omnipresent pain fluids. It seems simple enough, really. But one more artificial fluid screwing with the already delicate balance of the systems in the body does nothing but damage. With the steroids come other side effects that must be managed including a swollen face, acne, difficulty sleeping, and who knows what else. I feel we are watching another domino slowly fall.
We seem to have settled into a pretty dependable rhythm of vomiting. We see about 50% of her meals twice, give or take a sandwich. Oddly enough, she rarely has any associated nausea. It’s very sudden, like a rifle shot, sometimes almost too sudden to react. We’ve been extremely fortunate thus far that we’ve been able to catch everything, so to speak. My Boy Scout training is paying off; persistent prior preparation is a life saver, or more appropriate, a cleanup saver. Word to the wise -a berry smoothie and mac-n-cheese, if you gotta do it, are the things to eat. Falafel, not so much.
We’ve been fighting a lot* lately, too, which sucks. We’ve never been fighters, ever. Verbal sparring for entertainment, oh yeah, but not fighters. Of course, the fights are usually about critically important things like…uhm…. Well, I can’t think of any of them right now but let me tell you all of them have been over VERY important and critical, critical things. And I’m always right, too.
* While I feel uncomfortable airing difficult personal issues we’re facing I’m much less inclined to paint some campy Ward and June Cleaver version of Chris and Maggie’s Great Cancer Adventure. This shit sucks and it’s taking its toll on us physically, emotionally, and every other -ally you can think of. We’re extremely lucky that we are the absolute best of friends through all this. It’s difficult to imagine what this all might be like were we to be not so close or so lovey. No matter what ridiculous nonsense we fight over we can always navigate back to our happy place of love, trust and friendship. We are truly lucky.
Maggie has also developed a more regular cycle of fever. Nearly every night and some evenings she runs about 101 fever. There’s really no reason anyone has come up with other than the label “tumor fever.” No harm seems to come of it other than dragging her down and making her feel rotten. Ibuprophin or Aleve breaks the fever. As a side-note, we specifically avoid Tylenol because we’ve been told that it is very hard on the liver. Maggie’s liver is under enough stress dealing with the tumors. No need to kick it while it’s down.
Thursday she’ll fly to Houston via Angel Flights. She has a doctors appointment late Thursday (we still don’t know when) and then treatment starting early Friday morning. The treatment will last a full eight hours and, from what we’ve seen from past experience, will knock her on her ass. I’ll be in Houston Friday to care for her and drive her home, assuming she’s stable enough for the trip. I expect this weekend will be a wash, with baths and sleeping and TV. We do, however, intend to attend a chili cook-off Saturday, if there’s any way possible. I’ve been talking smack for too long and to too many people about my chili and, for the last five years have been unable to put up. Hopefully this year I’ll be able to represent. If not, there’s always next year.
Today we had yet another CT scan. It was scheduled at noon. We left the house at 11:30AM to get there early. We left the clinic at 2:30PM, hungry and a little ticked off it took so long. It’s really amazing how much time this stuff just eats away at our days.
We had a nice evening tonight. We had a quick supper with our friend Kyle and afterwards we watched some mindless TV. Maggie seems to be feeling ok although we’ve got a little anxiety about her pain pump. It has spontaneously turned off a number of times over the last few hours. Yes, checked the batteries. Yes, checked the fluid lines. No, we haven’t changed any thing. No, I haven’t taken it apart to see how it works (despite the urge.) I’m sure it will be fine but it just all adds up. And that pain pump has a really, really important task. Simple, but important.
Since she’s been in more pain lately we’ve been going through the bags of fluid more often. I’m guessing we change the bags about every 16 -18 hours. The time depends substantially on the number of boluses she self-delivers. Her current rate is 50 micrograms per hour with a 25 microgram bolus. Sometimes (like probably tonight) those bag can changes happen at pretty inconvenient times but, hey, gotta roll with the punches. After all, that IS our newly-adopted Indian name – Rolls With Punches.