zen.org Communal Weblog

June 23, 2011

Happy Hat-Maker

Filed under: — brendan @ 18:32 IST

Today was a decent day of visits and progress. Elana was able to be in this morning, and Doug came by in the afternoon. And, after lunch, I finished knitting the “Turn A Square” hat! We’ll have a picture tomorrow probably; it went home with Elana to do the last sewing up of the top, since the right needle size wasn’t here.

But there’s no big news on the medical front—in itself good news, I think. I’ve got a bit of an itchy rash on the upper thighs of my legs which they had a dermatologist come check out. I remember having something similar during the chemo in April, but this time I actually mentioned it instead of trying to just ignore it. ūüėÄ It’s 50/50 whether it’s related to the chemo, the doctor said, but I’m pretty convinced given it appearing last time. They’ve given me some cream (Eumovate) which should clear up the inflammation over the next few days.

Cruel and Un-Just

Have I mentioned how cruel the Internet connection is here? It went down again this afternoon, and probably won’t be back until tomorrow. (This is going out through my mobile phone’s data connection, one trickle at a time.) Aside from the fact that it’s a wifi which wants you to give it a fresh username and password once every hour (found a way around that), it’s got real stability problems. The issue is bigger than just keeping patients placated with online fluff, though, since the nurses were apparently unable to access lab results off and on all day.

Makes you wonder if we’re any better off with all these electronics and fancy gear, huh?

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June 22, 2011

More Simple Day

Filed under: — brendan @ 21:00 IST

Great part of today: Elana was able to come in, with our visiting friend Doug! ¬†She had to suffer The Mask, but she was here. ūüôā

Aside from that, something of a simple day with little to report or write—probably a good thing every once in a while.

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June 21, 2011

So Far So Good

Filed under: — brendan @ 20:55 IST

The consultant doctor came by this afternoon with most of her team of haematologists, et al., to report things are progressing along fine so far. The blood draws show no leukemia cells, but also no neutrophil cells either, so both the bad guys and the good guys are out for the moment.

Last night I didn’t have any headaches, but I did tell the nurse that I felt a little pressure inside my head, which is enough for the doctors to decide to go ahead with the CT scan this morning. The other thing the consultant reported was that the scan came through clear and fine, so I don’t need to worry that the headaches I was having are anything more than just plain headaches. (Great relief.)

Neutropenic Paranoia

The CT scan itself took maybe 3 or 4 minutes. You lay down on a (padded, comfortable) slab and they roll you through what looks kind of like a spinning ring. For the chest CT I had before, the machine tells you to inhale and hold your breath. For a head CT, they used a strap across my forehead to hold my head still. (Didn’t hurt, and wasn’t holding it down, just holding it in place.) The person doing the CT told me to just try to look toward a single spot and keep my eyes from moving too much. Back in March I had one of these; that time, I chose to stare at a consistent spot where you can see the device spinning around. This time, I just closed my eyes. Much easier.

But it took more than an hour for the whole thing. Why? I had to wait, and wait, and wait. A porter (nice older men who push people in wheelchairs, beds, etc all over the hospital) brought me from St Annes Ward where my bed is to the CT & MRI department. There’s a public waiting area with a bunch of chairs, and down the hall there’s an open area where in-patients are deposited. A good 20-30 minutes went by; another patient was sitting about 8 feet from me, also in a wheelchair, looking impatient.

There were lots of women, all 60 and over I’m guessing, sitting over in the separate public waiting area. Each wore a blue hospital gown, holding on their lap what looked like a plastic shopping basket containing their upper-torso clothing and their purses. They were being processed in CT Scanning Room 1, a nondescript looking pair of grey double doors.

I have to wear a duck mask when I leave the ward, since I’m now neutropenic and open to completely random infection by everything. It mashes your nose really tightly, making me really only able to breathe out of my mouth inside the mask. This whole appearance, by the way, is still weird for people who see it—which appears to include hospital staff.

For that half-hour I watched people go by, back and forth. Many didn’t look around when walking, but there were some who you knew were staring straight ahead, straining to not turn their heads. I’ve seen women do this when they know a guy is leering at them, but this was an even split between men and women, young and old.

(Told later, the nurses on my ward were surprised I’d been made to wait. I don’t know if they mean cancer patients in general jump the queue, or if specifically neutropenic patients do.)

Finally the double doors opened, and out came one of the women in a blue gown. A CT scan operator came out and brought my neighbor into the scanning room. A moment later, a porter appeared down the hall with a man lying on his back on a gurney, saying he was going to be bringing him over to the x-ray department in just a minute. He parked the gurney about a foot from where I was sitting.

Then the guy lying on his back started to cough, a little. Right next to me. I was sure the mask was helping, but still. Please go away. Please go away. Still coughing. It seemed like forever. The porter reappeared after what was probably only a few minutes, and the guy carrying the threat of some random thing I could catch went away.

To the right of CT Scanning Room 1 was a big double-door storage closet of some kind, a single door to a public bathroom, the entryway to the CT Operator room, and, near the end of the hall, CT Scanning Room 2. I was puzzled why I’d been waiting so long if they have¬†two¬†of them.

The answer presented itself almost immediately—the double grey doors opened, and out walked a couple of construction workers, covered in concrete dust. I could see through the doors a dark area with clear plastic hanging around, tools on the floor, and a grey powdery dust all over everything. The same dust those guys were carrying around on them as they walked by.

When you’re neutropenic, they’re hesitant to let you go outside right now because there’s a bunch of building work going on over next to the parking garage. Because of all of the concrete, there’s a risk of airborne mildew which could give said patients a fungal infection. They’re nasty when you have no immune system, and can make you get pneumonia.

So these guys were potentially wearing big invisible piles of infection. And I had my mask. I’m sure it was fine, and none of them walked within even six feet of me, so it’s not like any invisible fungi were leaping across with shouts of glee. But, still. After the guy coughing, I get this.

The scanning room doors opened, out came The Other Patient, and the CT scan operator took me in, did the scan, and brought me back out. This is where the next half-hour went, waiting for a porter to appear.  And more guys coated in powder, coming and going, among the many people not looking you in the eye.

Again, I’m sure I’ll not lead to anything. But if you’re sitting there that long, with nothing to do, your imagination really will have a field day.

Next time I have a CT scan, which I’m sure I probably will at some point, I’m bringing a damn book. ūüôā

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June 20, 2011

Wham Bam

Filed under: — brendan @ 18:48 IST

Man, last night didn’t go well, sleep-wise. After a pretty smooth day, I was expecting a decent night. At 2am I was woken up for obs, like normal, but my tummy felt queasy. Nothing ever got any worse from that, thankfully, but at the same time I also had a headache. To top it off, both sides of my jaw were aching. Joint pain is a possible side-effect of the chemo I’m getting, so it sorta made sense. But the problem was all of this combined really made it difficult to sleep. I was basically awake until some time after 5 o’clock. The nurse on duty gave me some tramadol, a pain-killer, which helped reduce enough so I was able to sleep a bit.

I got two paracetamol (like Tylenol) at around 9 this morning to get rid of the headache, which came back after I was awake. They usually don’t use that specific drug because it will also bring down a high fever—which they avoid if at all possible, since it’d hide a fever, too. But it did the trick, and got rid of the headache. Which is a relief: when one of the doctors visited this morning, he said if I still have the headache tomorrow they’ll probably want to “scan [my] brain” (do a CT, the nurse told me later) just to make sure there’s nothing bleeding or happening in there. Just a little scary.

My tummy was still upset this morning, so I didn’t eat any breakfast. The best I could pull off was a couple of pieces of toast. The second piece needed a bit of raspberry jam on it—I couldn’t force myself to endure eating the plain toast. The word “bland” may as well have been sketched into it (more-tasteful wheat toast, no less). Also didn’t have a big appetite for lunch, though not because of anything not feeling right. During the mid-day chemo I watched Wimbledon, then spent time hacking on the computer some more.

Now it’s just after “tea” (dinner) time, which gets served around 4:30-5:00pm, and I managed to eat a decent portion of my meal so I won’t be starving later. Also have a scone, just in case.

Dot dot dot

Another side-effect was little red dots on the back of my hands, called “petechiae”, which are where caused by broken capillary blood vessels. The blood collects under the tissue and appears as tiny dots (usually the size of a pinpoint). The two doctors didn’t seem to react or seem troubled by them when I pointed them out, and a nurse told me they’re just there until platelets are up (later), so I’ll just put them under the “Side-Effects” banner.

Load ’em up

On the play-list for tonight, aside from knitting more of the hat, I’m getting one bag of platelets, which takes about 20 minutes, and also get a bag of blood which is either 2 or 3 hours. In an effort to have the blood transfusion help me both in terms of energy and my ability to sleep, around the middle of the day they gave me the LAST BAG of cyclophosphamide chemo med. The remainder of my week will be spent being monitoring for side-effects.

Medicine everywhere

Unfortunately Elana’s come down with a head cold, which means she won’t be able to visit for at least today and tomorrow. (Our friends arrive tomorrow to stay through to the weekend, which will be great!) Nurse J, one of our liaison nurses, said hopefully it’ll only take a day or so for the contagious part of her cold to go away so the doors will open for her again. ūüėČ

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June 19, 2011

Two Out of Three Ain’t Bad

Filed under: — brendan @ 19:45 IST

The second 2-hour supply of cyclophosphamide went in this evening, after I had my 5pm dinner/tea. It was preceded by a blood transfusion and a transfusion of platelets—apparently my counts are doing their requisite drop to the floor, as expected. S’ok, pretend it’s the Spring with fresh crops getting ready to bloom.

Last night was enough sleep to make me reasonably energetic today. I spent a good length of time hacking on technical stuff again, which is refreshing (for some of us ūüôā ). With great thanks to my Aunts who came over to play with the boys, Elana and I got to spend some time together this afternoon.

Overall, a relatively smooth day. Fingers crossed the night goes by as successfully.

(Minor correction to yesterday’s blog post: Mesna before and after the cyclophosphamide is to protect the bladder. A different drug, rasburicase, is given ahead of the rest to protect the kidney.)

A different taste of Wimbledon

This week, I’ll be able to watch plenty of Wimbledon tennis, if I’m in the mood. This, at least initially, has a sad taste to it though, since for the last ten years we’ve been in Maine when it’s been on. So we’re used to seeing it on NBC, with John McEnroe and compatriots offering the commentary. Watching it here in Ireland, probably on a BBC station, will be a whole new experience. It’ll be new, and different, to match the rest of what’s going on lately—but at least the tennis itself will still be the same satisfying addiction.

Turn A Square

My hat knitting project is coming along pretty well so far. Maybe another week to go? I’ve already got the next project lined up: a pink Party Lace Scarf for Nurse S. She was the first nurse to ask me to make her a scarf shortly after I started learning back in March, and I figure I should follow through on the commitment. It will also be pretty challenging after a “plain” scarf and a hat; just take a look:

[ pink lace scarf image ]

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June 18, 2011

Half-Started or Half-Finished?

Filed under: — brendan @ 21:27 IST

We’re halfway through the cycle. ¬† At around 5am the first chemo med finally finished. Early this evening the second med, cyclophosphamide, was started for its 2-hour run. I’ll get this again on Sunday and Monday.

The second med is a big dose of it, so they’re doing preventive medicine around it. A big syringe with Zofran anti-sickness med goes in first, since cyclophosphamide can have hefty nausea side-effects. (The “big syringe” doesn’t have a big needle on it—the fluid just goes in through my central line, so loses all the drama suggested by the name.) ¬† I also got a single unit (bag) of blood beforehand.

Because of the cyclophosphamide, it’s important to protect the kidneys from what’s going to be passing through them. (Elana’s description was great: imagine you’re drinking a bunch of olive oil before a lot of really strong booze.) A 15-minute drip of Mesna is given both before and after the chemo 2-hour run is finished, and yet again 3 hours later. This just means I’ll be woken up at midnight for the last one, but then I should get to sleep the rest of the night. (Well, except they come around at 2am to get the “obs”—blood pressure, temperature, etc—so maybe it’ll be a little bit less.)

I slept a bit longer this morning to make up for some of the sleep lost, but it’ll be a few days before I’m back in gear, I think. So I’ll stop myself from trying to think of things to write about now, and just go to sleep. ūüôā

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June 17, 2011

Take another little pic of my heart now, baby

Filed under: — brendan @ 19:54 IST

Last night was a doozy. ¬†I didn’t get an awful lot of sleep. ¬†One cause was the periodic bleep-bleeping of the pump seeing tiny air bubbles when it was pushing the chemo into my system. ¬†(Despite what we’ve been told in TV and film, apparently a huge amount of air can enter your blood stream before it really causes a problem. ¬†But this device wants to be careful.)

The bags of chemo fluids kept being loaded up every three hours, as well as ¬†other small bags between each to flush the remainder in the IV tube. ¬†If it wasn’t that, it was other things like pain in my legs, with each leg’s pain associated with the biopsy done previously on its respective side. ¬†Or it was constantly waking up to pee, since my body has to get rid of the massive amount of liquid being put into it.

Too many reasons to be woken up. ¬†A nap this afternoon helped recover some of it, but since I’ll be having these constant chemo fluids ongoing tonight until about 3 or 4 in the morning (each one holding a full liter of fluids with the dissolved Etoposide), sleep will probably be iffy tonight, too. ¬†Maybe I’ll crash out Saturday morning before the afternoon brings the other batch of chemo—thankfully only 2 hours each day for 3 days, instead of this non-stop flow.

It goes past “11”

We’re currently on Bag #10, with another four to go. ¬†Imagine you’ve got a 2-liter bottle of water; now take five of them, and pour them into your kitchen sink, one at a time. ¬†This is how much liquid has been going into my veins since yesterday, with pee being the only way for most of it to escape. ¬†They’re giving me protective medicines both for my bladder and my kidneys, since my whole body is in overdrive. ¬†In particular, my heart.

Heart Echo

This afternoon a girl showed up pushing a fancy-looking laptop on a cart to do a heart echo (aka echocardiogram).¬† It was just like having an ultrasound to see your baby developing and hear their heart beating. ¬†The live images on the “laptop” screen showed the valves of my heart working away. ¬†As it was explained to me by great male Nurse D, these measurements are being done on mine to check my ejection fraction—making sure my heart is keeping up with all of the blood it’s supposed to keep moving, given the dramatic increase in content—not to mention the fact the increase is being sustained for a good 40-hour stretch, non-stop.

Movies and real life

In a blog comment, our friend Michael mentioned the made-for-TV film Wit, starring Emma Thompson. ¬†It’s about a person undergoing treatment for cancer, and apparently she does an amazing job. ¬†While I think others would find it worthwhile, I’m not going to jump at seeing it. ¬†Roger Ebert puts into words a summary of my own reaction to the idea of watching it, and also states something Elana and I were discussing in a conversation recently:

I inserted the DVD in the machine, pressed “play,” and settled back to watch it. The first shot is a close-up of a man’s face, a doctor, who tells someone she has advanced ovarian cancer. The next shot is a close-up of the woman he is speaking to, saying “yes?” or “and?” I forget which. I turned off the TV. I realized I actually could not watch the movie.

I remembered it too clearly, perhaps, and dreaded re-living it. When I reviewed it, its situation was theoretical for me, and I responded to the honesty and emotion of the drama. Since then, I have had cancer, and had all too many hours, days and weeks of hospital routine robbing me of my dignity. Although people in my situation are always praised for their courage, actually courage has nothing to do with it. There is no choice.

Exactly. ¬†It’s just life, and figuring out how to deal with what you’ve been given. ¬†You push yourself through this experience by managing to get your mind around the idea: since you can’t change what’s happening, you may as well come to grips with the fact that it’s taking place and just ride the course.

That said, it’s not at all simple to hold on tight the whole time. ¬†Elana’s gotten really good at catching me, though.

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June 16, 2011

When In Doubt, Rewind

Filed under: — brendan @ 21:47 IST

New round of chemo started this afternoon.

They’re going to be doing 1-liter bags of fluid (containing 400mg of Etoposide in each) as a 3-hour drip, repeating them for approximately 36 hours. ¬†As I type this, the second bag is nearly finished.

Then there’ll be a 12-hour break. ¬†Sometime early Saturday afternoon, the other chemo med, Cyclophosphamide, will be done on a 2-hour drip for three days in a row.

These are heavy-duty meds, with a lot of risk of side-effects including nausea (particularly with the second one), problems in the GI-tract (the full route from your mouth to out your butt), and other things. ¬†They don’t know which, if any, I’ll end up having, but they have to tell me about them. ¬†(And I feel better knowing, really, even though it also takes some effort to convince myself that I shouldn’t expect everything to happen.)

They said this course of treatment will be different from my earlier ones, which had similar potential possible side-effects.  I was lucky and had very few.

Once they’re done, we wait for a few weeks with my numbers starting back down at the minimum/zero amounts.

Crazy timing

Needless to say, we didn’t expect things to go this way. ¬†We knew I’d have to come in for another round of treatment, but the level required, and the manifestation of the leukemia cells, were both a shock.

This means some things won’t be able to happen as much as I’d been hoping. ¬†We thought there was a chance I’d still be at home into next week. ¬†Some close friends of ours from California will be staying with us next week as part of a trip they’re doing. ¬†We knew when originally coordinating the visit that there’d be a decent chance I wouldn’t get to see them at home, but the hope was still there that I’d be able to hang out with them. ¬†Can’t do much about it, of course—I’ll get to see them a little bit assuming I’m in decent shape next week. ¬†Knowing Elana will get to have a lot of time to chat with them is a big plus. ¬†And I know our boys will have a lot of fun playing with their two daughters, who they’ve not seen for a couple of years.

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June 15, 2011

Not the greatest news

Filed under: — elana @ 12:27 IST

I’m going to do this, so B doesn’t have to.

He’s being readmitted this afternoon. ¬†In the 3 weeks since his last bone marrow biopsy was taken, the leukemia has come back with a vengeance. ¬†Physically, you can’t tell looking at him. ¬†But the biopsy tells the story: the last biopsy they were looking at 4% leuk cells. ¬†Yesterday’s had 70%. When he was admitted, he had 80+%. ¬†We’re almost back at square one, but with less in our arsenal. ¬†Since the first two rounds didn’t work, we have less choices for treatment. ¬†He can’t get a transplant until he’s in remission (which he definitely is not). ¬†So it’s a “severely toxic” dose of chemo this round, with Dr M almost guaranteeing the common side effects that B sidestepped last time.

We don’t know what the chemo meds are, or the duration yet: Dr M says that she won’t know til the meds are in her hands, either later today or tomorrow. ¬†But I do know that as soon as she gets them, she’s going to start up the chemo.

B is in the boys room right now, playing Lego with them. ¬†We pulled P from school early, since if this round is going to be so harsh, we don’t know how long it will be until he’s well enough (or strong enough) to be able to see the boys.

Thanks everyone for all your support and thoughts and whatevers. ¬†They help us get through this a lot more than you know. ¬†Things aren’t looking the rosiest right now, but as Michelle, one of our liaison nurses said today, “There is *always* hope.”

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June 14, 2011

Poss chemo this week

Filed under: — brendan @ 16:51 IST

We went in this morning for another set of bone marrow samples, as well as blood samples.¬† We meet with the lead doctor tomorrow morning; we’re expecting I’ll be admitted back into the hospital tomorrow or Thursday to start my third round of chemo.¬† We’ll be packing up clothes and things just in case.

More details tomorrow.

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