zen.org Communal Weblog

May 31, 2011

Keep Waiting and the Word Transplant

Filed under: — brendan @ 16:51 GMT

I’m still at home.

We went in for blood samples and to meet with the lead doctor this afternoon. They’re seeing slow recovery of the bone marrow from the chemo treatment, and some reduction in the leukemia cell count. They want to give it another week or two to see how things progress. They also want to line things up should they reach a final decision that a bone marrow transplant is necessary to really combat the disease.

Details

From the bone marrow samples taken last week, the apirate (liquid) showed a reduction to 4% of leukemia cells, meaning it’s technically in remission. However, the bone marrow biopsy (solid) had some instances which they want to test further, since apparently the growth hormone shots (Neupogen) I’d been doing can skew those parts of the results.

Platelets were up to 50 (yay!), white cells around 1.2, and neutrophils were at 0.8. On Friday, we go for another blood draw so they can see how my numbers are behaving (and hope for further improvement). They also want to see if they need to give me Neupogen to boost neutrophils through the weekend to Tuesday next week.

Another biopsy will come either next week or the week after, depending in part on the numbers that they get on Friday and on the following Tuesday. They want to see if the biopsy results change after giving it more time. We meet with the lead doctor again on that Tuesday to learn more.

A further round of chemo will come some time in the next few weeks (less than 6 weeks), but we don’t yet know when.

The word “transplant

Since my body didn’t respond quickly to the first round of chemo, and even after this one it’s showing itself to be a slow pace of recovery, they are beginning the process of considering a bone marrow transplant later down the line. (Some time after the next round of chemo.) If they decide this is necessary, they want to have already begun looking for a match. (Sadly, my brother isn’t, but apparently that’s generally low odds.)

Today they’re sending a formal letter to the doctor at St James’s Hospital here in Dublin, which is where transplants are actually done. They need to start the process now so things are set up if they find that chemo treatments aren’t doing the job. They also want to get a second opinion about their findings.

We’ve only just begun to process this in our heads.

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May 24, 2011

Home Til Next Tuesday

Filed under: — brendan @ 20:33 GMT

I’m okay to stay home for the next week.

We went into the day ward this morning for bone marrow samples (both the aspirate/liquid and the biopsy/solid ones).  Also got my central line dressing redone and had blood samples taken.  They said we were all done!  I waited inside the entryway downstairs while Elana went to get the car.

But then she came walking back from the parking garage.  The liaison nurse had called her, saying they already got my results and if we’re still there, they want to look at giving me some blood transfusions  My red cell count (hemoglobin) was around 8.3 or 8.4, just under the 9.0 they prefer.

So a nurse took the initial blood sample, and said she’d come to the waiting room and let us know how long it’d take for the blood bank to get the blood together for me.  It was already past noon, and it takes some time for them to get the blood bags together.  It usually takes just over 3 hours for each one to drip its way into me, so it’ll be about six hours of sitting, once they got them to us.

Coincidentally, I have to return tomorrow morning for a CT scan to check that the infection in my lungs, from the pneumonia I had in March, is now long gone.

The haematology doctor came to let us know it was going to take a while to get the blood bags from the blood bank, and since I’ve got the CT the next day anyway, we can just go home and do it tomorrow.  So I’ll be spending most of the day there.

Related to the bone marrow samples, we’re meeting with the doctors on Tuesday next week to talk about what happens next since it can take some time for the samples to get processed.  This gives the doctors the details they need to determine when I’ll be getting my next chemo treatment, and which one they should use.

Knit Lots, Knit Often

One way I’ll be making the time go by tomorrow is by working on my new knitting project—since the scarf is finished!

The next project is a hat using a pattern called Turn A Square.  The scarf had 20 stitches for each row; the hat is knit in the round, starting off with 96 stitches.  Yowza.  More learning. 🙂

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May 20, 2011

Home Til Tuesday

Filed under: — brendan @ 14:58 GMT

We went into the hospital today so they could take blood samples, which were usually being done each morning on the ward. Based on the results, they’d see if I needed a bag of platelets or a blood transfusion, and get a look at how I’m doing.

The real surprise: my platelets are up to 28, so they know they’re being made. My neutrophils were at 0.9, but they said 0.5 is the number which would have given them some concern. With the platelets increasing, they expect the neutrophils to follow suit.

So I don’t have to go back in for any other tests until Tuesday, when they’ll do the bone marrow tests and we’ll know what the next steps are going to be. I just have to be careful and not get sick, get a fever, etc.

But I’ve got the weekend. 🙂

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May 18, 2011

Discharged

Filed under: — brendan @ 19:30 GMT

I’m home, discharged from the hospital.  My neutrophils were 0.5 yesterday; they gave me a growth hormone shot.  The sample taken this morning had them at a whopping 5.1.  The doctors wanted them to go up by 0.1 or a bit more to go ahead with letting me come home.  I don’t know if they were already expecting that sort of a result.

On Friday I go into the Day Ward and have my blood drawn for testing, and they’ll give me a bag of platelets or a blood transfusion if I need either/both.   The results of that test will help guide what else happens next week.  Tentatively, on Tuesday I’ll go back to the Day Ward for the bone marrow test (aspirate and biopsy).  It may happen later in the week based on how my counts look, but I’m not sure what the criteria will be.

I’m due further chemo treatments regardless; exactly what the next one will be will get figured out next week.

Right now, I’m just trying to grasp the idea that I’m home.

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May 17, 2011

To Be or Not To Be?

Filed under: — brendan @ 20:27 GMT

There’s a chance I’ll still be in the hospital tomorrow—and some sort of chance I’ll be at home.

The doctors want to see how my body does with a growth stimulating hormone shot today, after my numbers did the predicted dip. (The blood samples taken this morning had white cells at 1.0 and neutrophils at 0.5.)

My consultant, the head doctor, said she thinks if my white-cell count (specifically the neutrophils I think) shows a move up with the shot, and if I’m still well, they may discharge me tomorrow. If my platelets have moved down from the 20 they were today (and were yesterday, which is itself kind of interesting), they’d give me a bag of platelets—what they called a “pool”—before being discharged.

I’d come back in on Friday to the “day ward” for blood tests and a review of how things are progressing; based on the results, they might give me platelets or a blood transfusion then. And again to the day ward early next week for the same set of tests.

Those will decide when in the next 7–10 days they decide to give me a bone marrow test to check the status inside. If the numbers don’t make the progress they want, they’ll do the bone marrow test earlier in the week; if they’re doing ok, they’d look to do it towards the end of the week.

Before all of that, if the count in the morning doesn’t go up even a bit, I’ll be here. Likewise, if the counts do it enough for me to be at home, developing a fever or starting to feeling sick will mean I have to come back.

So, don’t know what to expect yet. We’ll see. Really trying to restrain the hope since we’ve been burned before, expecting one thing and getting the opposite. Neither of us want to go through that again.

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May 16, 2011

Knitting and Hacking

Filed under: — brendan @ 18:31 GMT

On day 2 of not doing growth hormone shots, my counts for white cells and neutrophils did the predicted drop, down to WCC at 1.5 and neutrophils at 1.0. The doctors had warned not to react to this, since it’s a normal side-effect of the stop of the shots. Now we just wait and see how the platelets do; they were at 20, which is higher than recently but undoubtedly because of the three bags I got over the previous three days. We’ll be watching those over the next couple of days too.

Changing your surroundings

The context switch between being in the hospital and getting to be at home is really strange sometimes. It almost makes you feel like you’ve hallucinated something, but know you haven’t.

It’s the same subconscious shift as doing travel between to distant locations. You wake up in the morning in The Netherlands, and go to sleep in your own bed in Ireland. You’re walking down a sidewalk in Silicon Valley, and hours later you’re waking up on a plane landing in England, almost home.

So my head started to get used to being in my house again, and quickly had to adjust to being again in the hospital. But I’ve also now got lots of happy memories of very recent activities with the boys, and a nice longer length of time Elana and I got to spend together. It really helps to have these thoughts to steer my focus. Sure, part of it makes me miss them more, but that feeling is something of a constant. Instead of thinking so much about being apart, I’m also able to have clearer images of us being together.

Which really makes a difference.

Knitting…

Coming back into the hospital is made easier (a bit) by the passage of time. And for this, knitting really does work. I spent some time on the last third of my scarf project. E was able to visit for a bit after work today, so we started looking at what sort of project I might do next, after the scarf is done. Some sort of a hat, maybe? Still looking on Ravelry, with one candidate so far. (Pattern in my queue and PDF in my library—new Ravelry experiences abound.)

…and Hacking

I also spent a good hunk of the day hacking away on GNU development software (all free and high quality). Most people reading this will wonder if I’m nuts, but it’s actually a wonderful exercise of my mind.

Besides, I burned out doing Sudoku puzzles a bit ago.   I got to put the Sudoku book back in our cabinet at home myself, which was an interesting thing to find I enjoyed getting to do. Access to home has a whole variety of perks I’d never have predicted. Just being back around what’s most familiar to you has an incredible effect.

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May 15, 2011

Back at Hospital

Filed under: — brendan @ 19:01 GMT

It felt really great to be home with E and the boys.

Back in, bag of platelets done, and blood samples done.  No more hormone shots starting today, I believe; now we wait for platelets to get back into gear.

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May 14, 2011

Home for the Night

Filed under: — brendan @ 19:10 GMT

This morning my white cells were up to 3.1 from 2.3, and I’m loaded with platelets.

Back to the hospital tomorrow afternoon, but home with E and the boys for tonight. 🙂 🙂

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May 13, 2011

Numerical Progression

Filed under: — brendan @ 18:29 GMT

I might get to go home for an overnight on Saturday.

This is how the numbers have looked over the last few days:

  • White Cells: 1.0 -> 1.5 -> 2.3
  • Neutrophils: 0.7 -> 1.2 -> 1.7

Platelets are still sluggish, today at 8 (they want it to be higher than 10 minimum, with past 20 being better). We’ve been reassured by the doctors that this isn’t a side-effect of the leukemia itself. It’s also not because of HLA antibodies in my system. So instead this can happen because they’re a more picky cell about where it’s willing to go. It’s also been suggested that the growth stimulating hormone shots—which are helping boost the white cells and neutrophils—could be making the generation (or count) of platelets get slowed down a bit.

I’ve got one bag of platelets just finishing this afternoon, and another will come tomorrow morning (Saturday). As long as my bloods haven’t had any odd change, I’ll be able to visit home for a day! I’ll stay overnight and the come back Sunday afternoon after lunch—when I’ll get another bag of platelets.

I gave myself a growth hormone shot today, but they’re going to deliberately skip one tomorrow. Then they’ll look at how things are again on Sunday.

To be honest, I’d been hoping things were good enough for me to go home today for a couple of days. (I’m still eying actually being discharged, but hold that off at a distance.) It took a little while for my emotions to accept how I’d been looking forward to leaving today—more than I realized or was willing to admit, even to myself. It’s not always easy to focus on all of this just one day at a time. I understand why; it just asks for an awful lot of effort sometimes.

Uninterrupted sleep

With my cell counts mostly being polite enough to go up, this had an interesting positive side-effect: they didn’t need me to have my obs (pulse, blood pressure, etc) checked at 2am. I got to sleep through the night! I found I was yawning later in the morning—apparently uninterrupted sleep also qualifies as a break in a normal pattern if your body’s not used to such luxury. 🙂

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May 12, 2011

Counting Onwards

Filed under: — brendan @ 20:40 GMT

White cells were at 1.0 yesterday, and the blood sample taken this morning had them up to 1.5. The ever-interesting neutrophils went from 0.7 up to 1.2. Being over 1.0, I’m technically no longer neutropenic (I could eat salad!).  Even with these sorts of increases, I’ve been warned that they could go down a bit too, so we’ll see how things progress. They gave me a bag of platelets and two bags of red blood cells today to “give them a boost.”

I was told by the clinical liaison nurse that one of the haemotologists is considering a 2-day target of 2.0 for the neutrophils instead of the 1.0 I’ve mentioned before. Don’t have much more detail yet; we’ll learn more tomorrow.

With Veg

Tonight’s exercise is joining a significant part of the population of Europe in watching the second semi-finals of this year’s Eurovision song contest. And enjoying accompanying Twitter commentary.

Ciao. 🙂

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