zen.org Communal Weblog

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.

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. 🙂

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. 🙂

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.

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.

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.

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. 🙂 🙂

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. 🙂