Coming up on belief

Way back around infusion #3 (we're coming up on #8), Dr. Puzanov told us not to believe anything the CT scans showed us until week 18. This was in context of the tumor showing rapid growth during the early stages of treatment. That kind of expansion is normal, and even a good sign, since if the drug is working, the immune system attacks the tumor, and the tumor becomes inflamed. It's still pretty darned alarming to see a tumor that had been chugging along at about 3% a month for growth expand by 26% in three weeks.

So at the last CT scan (at infusion #6, the 15 week mark), the tumor showed no growth at all over the six week period. This is definitely a good sign, and we were excited about it - but still in the back of my mind is that little comment "Don't believe anything you see until week 18."

Well, week 18 was two weeks ago, but didn't come with a CT. A week from Thursday is our next infusion with a CT, marking week 21. I've got all my fingers and toes crossed - please let this be real, please let us have an actual tumor freeze. There's more to hope for from there - shrinkage is always to be desired - but a freeze is the first and most important thing.

Also hoping that Rob hasn't developed an allergy to the CT contrast dye. He had an interesting rash about 24 hours after his last CT, and no contrast dye will make tumor tracking definitely harder.

Life otherwise cranks on. After missing an awful lot of school to nausea the first few weeks, we got Aaron under enough control to remove the threat of the truancy people coming after us. And I, in a not so stellar mother moment, let things lie there from then until this last week. Aaron was still feeling crappy most mornings, and spending time lying down in the nurses office at least a couple mornings a week, but he wasn't missing school.

Then on Wednesday, he was feeling his usual moderately crappy getting ready for school, and threw up once before we headed out the door - so we brought a bowl along. And sitting in line to drop him off, he threw up again just as I was pulling forward to the drop-off zone, and I couldn't do it. I told him "This is ridiculous.", and pulled out of line, and we went to the pediatrician instead. I feel awful that it took that direct a reminder that we hadn't fixed the problem, just the legal consequences of the problem, to get me back in gear.

So, we still have no real answers, but Aaron has a battery of blood tests being run, a visit to an ENT scheduled this week (his dentist is seeing signs of too much open mouth breathing, and suspects issues there may lead to mucous, and a hyper gag reflex), and a visit to a counselor scheduled for the week following, since stress and school are definitely a major factor in this. During vacations, the rate of morning nausea drops precipitously - it doesn't go away altogether, but it becomes unusual, rather than 2-3 times a week.

I suspect, based on the last 14 years, that Aaron has a series of things going on, rather than a singular cause. He's always had a sensitive stomach and a hyper gag reflex, right from birth. Add to that, Dad is pretty sure (and I concur) that he started having abdominal migraines about three years ago, a case of reflux, a large double-dose of stress (Rob's situation of course, and 8th grade is proving socially miserable, due to 8th grade boys being at their maximum level of asshole), and chronic insomnia (when lack of sleep will make all of the above worse), and you have an absolute recipe for misery. I'm hoping that if we chase several of these things, we may be able to crank down the physical response several notches.

Even if it means missing a little more school. After all, our last appointment with the family court for truancy issues turned out to be hilarious in retrospect. It was 3 years ago, when Aaron first started having morning nausea issues. They gave us an 8am court time, and Aaron helpfully demonstrated to the court why he was missing so much school by throwing up all over the courthouse. They really couldn't say too much after that. So we kind of got a mumbled "School is important. Try to get him there more often." and they sent us on our way, with no further action. It probably helps that his grades are consistently excellent, despite the missed classroom time. He just took his reading evaluation last month and topped the grade. Not just best for his class, best score they've ever had for an 8th grader.

Robbie is chugging along through 11th grade without much commentary from anyone. He's a great kid, and very smart, but we do wish he'd show a little something. Drive? Ambition? He seems very willing to meander gently along through life, enjoying his drawing without pushing to improve it particularly hard, and also without showing any real interest in anything else. It's a bit frustrating.

That was the week that was

It was the last week before school starts again. It was also pretty much a dead loss. Rob caught a virus, and his hyped-up immune system decided to go full nuclear option. Fever, shakes, sweats, sore throat, swollen lymph nodes, inflamed spleen, throwing up - you name the symptom, he had it. This culminated in a nine hour day spent in the ER, because we couldn't keep the hydration up with the fluid loss. They put in 2 1/2 litres of fluid, which is probably the biggest reason for why he felt better, but while he was there they also ran him through a massive series of tests, because they really didn't want to think that this was just some random virus. So there was blood and urine analysis, a mono test, strep test, chest X-ray (in case of pneumonia), CT scan (in case his adrenal gland had ruptured), and then when they discovered his bilirubin was elevated (which made his urine an amazing shade of neon orange), a set of liver function tests.

The upshot of all this? He had a virus, his immune system freaked out, and then the dehydration spiral got him. They sent him home rehydrated with an anti-nausea pill and some pain-killers (after much back and forth with Vanderbilt about which drugs won't interfere with the trial protocol).

We did find out two interesting things though.

#1 - Rob has a benign condition called Gilbert's Syndrome. It apparently causes his liver to produce excess amounts of bilirubin when stressed (E.g. - when he has an infection and is dehydrated). It's otherwise harmless, but does make him a little yellow when he's sick, and occasionally scare ER workers.

#2 - The CT scan showed that in the three weeks since his last CT, the adrenal tumor has increased from 2.8cm to 3.3cm. The doctor at the ER was very unhappy about this, but when he called in Dr. Rez, our local oncologist, Dr. Rez was very nearly giddy with excitement (for his own personal levels of giddy - he's a really lovely person, but not exactly highly excitable). According to Dr. Rez, it is basically impossible that the tumor could have started growing that fast, which means the tumor is inflamed - which means that Rob's immune system has found it and started attacking it. He's quite adamant that it's the best possible sign, and that we should start seeing shrinkage within the next couple of months. (Please, please, please let him be right!)

Anyway at this point, Rob is feeling better, if still easily exhausted. The first day of school is Thursday, and Rob's next infusion is Wednesday, which gives us Monday and Tuesday to get all the school supplies, hair cuts, and generally get things ready to go for school. Gonna be a close one!

Various and Sundry

No karate tomorrow, as the Jazzercise people are taping for TV - something they do every couple of months. The weather is pretty, so I'm going to try to break out the weaponry and do some kata practice in the front yard. Also, a morning run would be good. Actually keeping busy in general would be good as I need to go back in the afternoon and have them redo the mammogram on one side with the radiologist present, and I'd rather not think about it until after I have something more concrete to worry about (or not) than I currently do.

Rob made it home safely, if with somewhat more excitement than necessary. He opines (and I thoroughly agree) that he could have lived very happily without finding out what a jumbo jet sounds like when being flown without engines. Fortunately after having an engine overheat and die, the pilots attempt to shut everything down and restart worked as intended and the plane landed safely back in Edinburgh under power. He got home about 18 hours later than intended, but all in one piece, which is how I like him. He brought birthday presents with him - a tartan shawl with brooch, a pair of gorgeous dragon-wing earrings, a butterfly pin from the Royal Botanical Gardens, a Hunting Ross tartan sash, and an assortment of lovely cheeses. The boys got Nessy stuff, which they're all excited about. Two books have also arrived from Bill (Thank you, Bill!), a book on designing knitwear, and a biography of Madeleine L'Engle. I'm already making inroads on both.

The other things I'm reading are a pair of books I found while down with my parents. They're quite similar in concept - study books on karate from an older well-regarded Japanese instructor. One is based in Shotokan, and one in Gojo-ryu, so neither is completely applicable to Isshinryu, but I'm finding a lot of useful exercises and technique tips. After all, just because we punch differently doesn't mean that I can't learn more about a roundhouse kick from a Shotokan instructor. Part of the difficulty of being in such a small and isolated dojo is that comparative to Isshinryu students in areas with several dojos, we end up with a much less broad range of experience. Sensei TJ tries to travel to outside seminars and broaden his experience as much as possible, but most of the time I can't do that, so I'm aiming for the written word. (Shocking, I know)

Boys and dogs are all doing well, as is Aoi (the lizard), but I managed to kill off most of the population of Rob's smaller salt-water tank, by not figuring out that there was a short in the filter on the tank next door that kept throwing the breaker. There are half-a dozen survivors, but one of the puffers and the beautiful giant batfish both died, along with a bunch of other fish. Fortunately I did manage to keep the freshwater tank oxygenated enough for all the fish to survive until the electrics got sorted out, even if they weren't exactly happy.

Needfull Things

It's been a week. I could really have lived without this one.

The first and more minor news is that both boys and I have bronchitis. Dad, when he heard me coughing on the phone this afternoon, asked me if I was sure it wasn't pneumonia, so now I'm thinking I should probably haul the lot of us down to the doctor on Monday just to be on the safe side. Even if it's not, it's miserable. No other symptoms, just this hacking cough that produces gobs of phlegm and won't go away for anything. Yesterday I was coughing so much and so hard I was starting to get streaks of blood from my lovely raw throat. Neither Robbie or Aaron has gotten that bad yet, but they're certainly not happy campers.

In more major news, Dad W. apparently has liver cancer. Whether it's primary liver cancer or metastasized from elsewhere is unknown yet. Neither is exactly a good option. To make things even better, he's down at his old house by himself right now because his insurance doesn't switch up to this state until Jan. 1 - until then, everything but ER care has to be down there. After Jan. 1, of course, everything except ER care has to be up here. Which is going to be interesting to manage in the middle of cancer treatment. Right now we're trying to figure out how to get him back up here, since he drove down, but post-biopsy isn't in good shape for driving back up. We were going to go get him this weekend, but he hasn't been released yet, and Monday Rob leaves for Brazil. At this point we're thinking we'll have him fly up, and we can retrieve his truck at a later point. My Brother-in-law may fly down to escort him, which would be welcome. I think Dad W. can probably use all the support and family contact he can get right now. Once he's here, I can provide attention and care, but with no extended family here, there's simply no way I can drive down and collect him by myself.

I hope to God Rob doesn't catch this bronchitis just as he's traveling, or Dad W. once he's back up here. That would be all either one of them would need.

Push-up Postponement

Like Becky and several others, I was planning on following the 100 Pushups plan and seeing if I could boost my pushup performance from its current barely acceptable level. I had done the pretest and the first week twice (I'm going slowly due to the easily aggravated nature of my left elbow.).

This morning however, I got down to do my pushups for the day, and the heel of my hand landed on a largish glass sliver. I then reflexively jerked the hand sideways (with my weight still on it), and successfully drove the sliver way down in. It took Rob most of an hour with an Exacto knife and tweezers to get that sucker out. I now have an inch-and-a-half long cut, shallow on one end, quite deep on the other, exactly where I put my weight when doing pushups.

So I think I'll be dropping out for a week or so and then restarting. Right now the very idea of pushups is making me feel a little queasy. Yoga on Tuesday is going to take some modification too, I suspect. Primarily I'm crossing my fingers that extensive washing and liberal applications of Bacitracin are sufficient to keep it from getting infected.

State of the Brain

I spent the last few days getting my pituitary MRI again, plus blood tests various and sundry. This morning I went trotting off to the endocrinologist for the review.

The good news is that the adenoma hasn't changed at all in the eighteen months they've been watching it. Both my endo and the neuroendocrinologist agree that I can safely drop down to having an MRI every other year. Yay for fewer MRI's and resultant less money spent taking pictures of my brain!

Also in good news, my weight is stable despite a summer of much less activity than my norm, due to the combination of travelling and trouble getting to the gym while the kids are home from school.

The less good news is that except for thyroid, which is stable, all my other numbers are showing the effects of the more sedentary life. Everything is still in a decent range, but cholesterol is up, HDL is down, insulin sensitivity is down, LDL is up.

Fortunately I get back into my normal schedule next week (The Y is shut down for annual cleaning this week), and there shouldn't be any difficulty with kicking my numbers back into place within the next few months. Next week I'll go back to yoga and pilates, once I've recovered from those sore muscles, the next week I'll put back the Turbokick, and then the weight work. I'm debating between going back to the weight class, which was what I was doing before, and going to the weight room to do my own workout. I tend to be more loyal to classes, so I'm more likely to actually get regular hard workouts if I take the class. On the other hand, the class does a lot of lunges and squats, which aren't always on when my knee is acting up, and is somewhat awkwardly placed time-wise, as it starts 15 minutes before the kids' swim lesson, and ends at exactly the same time.

All this is at an apropos time, since my major work of the week is revising my article on pituitaries for the Damn Interesting book. It's somewhat frustrating because Alan wants the article done in a significantly different way from the way it now is. Instead he wants it - exactly the way I initially wrote the dratted thing last year, before I was asked to do major revisions. Unfortunately, I'm pretty sure I didn't save my initial draft. Blarg.

Karate was all drill, all the time last night. We worked up a pretty good sweat, and Sensei was in an explaining mood, showing us bunkai from the early katas, and alternate ways the sequences of moves could go. Friday is kumite.

I Said "Ow" Too Soon

Because the next night, my knee went crunch.

Ironically, it didn't do this during karate practice, though I did do it at practice. We did mostly kata, which for me means Kusanku (plus review and minor teaching). All that popping up and down for Kusanku, and my knees were fine for all of it. Not even a twinge. Twinges are actually pretty common for me when kneeling all the way down, which happens no fewer than six times in Kusanku.

No. It was sitting down in the car. Opened the door, started to sit and crunch! It took me several tries to get my leg bent enough to get it inside, and driving home was no fun at all (stick shift).

I don't seem to have done anything really problematic to the knee. Today it's sore and swollen, but it functions fine and is perfectly stable. I've broken out the soft brace and ice packs, but don't see a need for the hard brace this time. But between the bruises from Tuesday (mostly forearms) and the limp, I seriously look like an abuse case. Based on past experience it should be fine in about four days. It rather puts the kibosh on Sensei's extra Sunday practice (at least for me), but I should be back in action by the next regularly scheduled class.

But I think I'm going to skip the full kneels for a few classes.

Body Talk

The Turbokick class at the Y has developed a small group of women who all hang together at the back left. It's my preferred spot, but I've never really made friends with anybody in the class until now. (Yoga and Core, being quieter classes, have more comraderie) However, about a month ago, a group of newbies clustered back by me, and when I took some time to walk them through the more complicated moves (Turbokick moves fast), they sort of adopted me in. They're a nice group of ladies.

Anyway, today after class we hung out for a little while in the sauna (which turned out to be a mistake, but more on that later), and after two of the group had left, the last two women started talking bodies. The smaller (a tiny woman) started complaining that she had gained some weight while the taller was reassuring her that she was still skinny. She then appealed to me for backup - we will note that both of these women are far thinner than I am (or would be even if I became anorexic), and when I said so, then both of them started telling me all the things that they envied about my body. Which is when I realized that among the three of us, none of us could see anything good about our own bodies, but had no trouble at all seeing the good points of the others. The tall drink of water feels like a rake, the little, petite one, hates her curvy hips and butt. I, of course, am not fond of my top-heavy figure. It was a rather new experience for me to have anyone envying any parts of my body, but these women who have lovely figures (that they can't see) do. It felt very strange.

In other news, I finally got tired of having my back hurt every night, which it has ever since December when I took a kick in the low ribs, so I wandered off to a chiropractor. The news is all good. Apparently I've got some residual (and now habitual) irritation and spasming around the site (I probably had a mild sprain). So a week or so of icing and some other therapy, and not staying long in the positions that irritate it (like sitting at the computer), and it should be good to go. However, I'm to avoid heat (even long, hot showers). Of course I found this out about 90 minutes after the stint in the sauna - oops!

School is winding down for the year - about three weeks left to go. I will try to do a little better about keeping things updated here. Ernie, I haven't forgotten your meme - I'll get to it, I promise!