zen.org Communal Weblog

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. 🙂

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.

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.

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.”

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.

After blood samples taken today, all looked good enough to not need any transfusions, and now we’re just waiting for next week’s meeting on Tuesday.  A set of bone marrow samples—aspirate & biopsy—are likely sometime next week, with those results being part of deciding what follows.  (e.g., third round of chemo.)  We’ve not yet heard from the transplant team at St James’s Hospital, but figure we will in the next week or two.

Numbers still improving:

• White cell count: 0.8 -> 1.6 -> 2.3 -> 7.3
• Haemoglobin (I’d been incorrectly calling this the red cell count): 8.3 -> 10.4 -> 10.4 -> 10.7
• Platelets: 28 -> 50 -> 67 -> 58
• Neutrophils: 0.5 -> 1.2 -> 3.1 ( good range is 2 to 8 )

My energy levels are also getting better, a bit at a time.  I’ve been able to walk Eoin to his pre-school for the last three mornings, which was really wonderful.

Achy Breaky Nerve

A couple of days after my last biopsy, I started waking up with a decent ache in my right upper thigh, just before the knee.  It’d been going on for a while and impacting my sleep, making me sometimes wake up at 3 or 4 in the morning.  I asked one of the haemotologists about it last week.  He said he believes they pinched a nerve when they went did the biopsy via my pelvic bone.  It’ll be a few weeks before that pain goes away.  Argh!  It’s usually there in the morning when I wake up, but they gave me some pain killers (tramadol) to help alleviate the pain.  Taking one before I go to sleep the night before has made a big difference.

My numbers are still heading up in the right direction.  The blood samples taken today were to see if my neutrophils were making progress, and setting me up with growth stimulating hormone shots if they weren’t.  Good news is that since last Tuesday they went up from 0.5 to 1.2, where being over 1.0 is their criteria for not being at “significant risk” of infection.  Nevertheless, it also doesn’t imply I can sit in a movie theater or be in a room full of people.  The other stats, comparing last week’s results to the two sets of this week:

• White cell count: 0.8 -> 1.6 -> 2.3
• Red cell count: 8.3 -> 10.4 -> 10.4 (still)
• Platelets: 28 -> 50 -> 67
• Neutrophils: 0.5 -> [not done Tuesday] -> 1.2

I’ve got another week at home, then back in to the Day Ward for more samples.   The following Tuesday we’ll meet with the doctors to learn about their plan for when my next bone marrow biopsy will be (perhaps sometime that same week).  A week or so after that, give or take, we’ll meet again to talk about when my next cycle of chemo will take place.

Sometime in the next couple of weeks we may hear from St James’s Hospital about having at least an initial meeting just to lay the groundwork for a bone marrow transplant should they find it is necessary.

For the moment, as long as I’m careful and stay healthy, I’m getting to enjoy being at home and spending lots of time with Elana and the boys. 🙂  And at least today, Ireland is giving us a decent early summer day, which is a nice plus.