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. 🙂 🙂
I might get to go home for an overnight on Saturday.
This is how the numbers have looked over the last few days:
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. 🙂
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. 🙂
Yesterday, my neutrophils (the ones the doctors care about) were at 0.4; this morning’s blood samples showed them at 0.7. When they reach 1.0 (for two days in a row, I should mention), the growth stimulating hormone shots will stop. In interesting timing, yesterday I did the shot myself for the first time, with the guidance of a nurse. Tonight I applied the second one myself. They sure hurt a lot less when you’re doing it.
In parallel, my white cell count was 0.6 yesterday, and was 1.0 today.
Fingers crossed this team keeps growing.
Dermatology 101
For a long time now I’ve suffered from psoriasis, a skin condition which appears (usually on my scalp) as red patches of skin with what looks like dried skin on it. I use dandruff shampoo which isn’t made for psoriasis in particular, but does a decent enough job most of the time.
A couple of weeks after my first round of chemo, I lost most of the hair on my head. But my scalp was perfectly clear, not a patch of psoriasis to be seen. It turns out one possible side-effect of at least one of the meds used in my chemo treatment has a side-effect of making psoriasis go away, albeit briefly.
Recently we noticed patches were coming back. This could be related to the fact that my white cells were coming back into being. My doctors asked me about my history with psoriasis, and today a dermatology consult (and then she with her boss) came to give me a look-see. I’ve now got prescriptions for a tar-based ointment (for my scalp) and some hydrocortisyl skin ointment (for the few places elsewhere, like under my arms).
Apparently I’m still learning about the ways a chemo treatment can affect your body.
On Sunday my neutrophils reached 0.3, and this morning they were at 0.4. Slow, perhaps, but it’s apparently showing something’s happening. These are the specific white cells the doctors are watching most closely. Once they (finally?) go past the 1.0 mark for a couple of days in a row, they will stop the growth stimulating hormone shots.
Separately, one of the haemotology doctors this morning told me they’d gotten the results back from the blood test they sent off around April 28th. They showed I don’t have HLA antibodies combating the platelets. This is good news, in a way. There are apparently other reasons the platelets may not be staying high after I receive some. While there’s a small chance the test results aren’t correct (one of those statistics you just have to accept exists), it also suggests that they may not have to seek platelets specifically matched directly to me. We’ll see how things progress.
Knit This, Baby
I’m reaching the end of the second ball of yarn out of three total for my first-ever knitting project. Elana’s got a picture of how it looks so far, which we’ll try to get online soon.
Wonder what I should knit after the scarf is finished?
Today the patient who’s been directly across from me for a while was finally discharged. Separately, another patient who was diagonal from me, before going into bed 7 or 8, also left today. In an odd form of balance, a patient who’s been diagonally across from me came back after being out for a couple of weeks. Don’t know why he’s returned.
They’re all different people, with different conditions, none of which are my own. But it’s hard to not keep wondering when my own counts and such will make their target. Had a bag of platelets today to give them a boost.
Fingers staying crossed.
Snacky?
On my tray left from my lunch/dinner requests I’ve got a scone (muffin), a 2-pack of cream crackers, a single small square container of Philly cream cheese you’d usually see on an airplane, and an innocent brand pure fruit smoothie.
And I have weight I need to gain.
What an odd coincidence. It’s not pieces of fruit, but it’ll do for cravings, since I finished my dinner/tea at around 5 o’clock.
Today had a really nice treat: Patrick was able to come in for a solo visit, which we’ve not been able to do before. Visiting at my Aunt Mary’s house for a sleep-over last night, he wanted to stay up for the AS Roma v AC Milan football match. The image of him fast asleep on the couch before the match ended is really cute. During his visit here, he enjoyed talking about both the professionals and his own Saturday morning match. Combined with talking about Legos and other things, I got a great bit of time watching the enthusiastic smiles come up on his face.
Separately, Elana and I were able to spend time together talking and enjoying being together. This whole thing about spending time apart is still foreign to us, even having suffered through it for two months. That time makes it difficult to process all the rest of this sometimes.
The help from close friends and family really can make a difference, even in the face of the incredible strain and stress of life. You know words of thanks aren’t really going to express the gratitude you feel, but you try to say it anyway and hope they hear what you’re trying to say.
Guys talkin’ medicine
Today there were three male nurses and one female nurse working on the ward. Sure defeats any and all stereotypes I had of nurses being mostly done by women. Sure, it’s undoubtedly still a majority, but I also expect a hospital in Dublin, Ireland is an interesting place to look for trends. (Not #nurse trends, you Twitter addicts.)
Guys knittin’ to the spoken word
I think I need to make a lot more progress on my knitting before I try to actually do it while listening to the spoken word. It’s not disruptive—it’s more of a question of where my attention should be. If I’m paying attention to the knitting, I find it really hard to actually process the words I’m listening to with headphones. (This is true for me in general, though—I can’t listen to two people talk at once, either.) Which means when I knit and listen to a football match which is on the TV, I’m not really hearing it.
That is, until the commentators all make an audible increase in adrenaline. I pause my knitting and see what big impressive play is on the screen—which in European football/soccer usually means the play ends up not happening, but it’s always close. The low scores of football matches over here, and those of the professional soccer teams in the US, must drive a large portion of the US audience nuts.
So I’m going to use the book-on-CD of Neal Stephenson’s novel Anathem as a different source of relaxation, and try again later to mix it with knitting. Right now, each pleasure deserves its own time and its own focus.
Today was fairly uneventful: bag of platelets, numbers mostly unchanged, and my arms are happily tired from knitting and reading and hacking on code and using the Net. Something of a holding-pattern sort of day. Don’t mind that.
More tomorrow!
The bag hanging above me was about half-way through its drip, drip, drip efforts to complete my second blood transfusion of the day yesterday. My count headed down towards 8.3 or so, prompting a new reload. As I understand it from what the doctors said, my two successive treatments of chemo (with the second being significantly stronger than the first) are what can make things take a bit longer. So we’re still watching and waiting as we head through the weekend and into next week.
Knitting On Another Planet
I’m going to see how far I can get through my second ball of yarn this weekend. Our dear friend Victoria sent me a books-on-CD version of Neal Stephenson’s novel Anathem; this weekend I’m going to see if I can listen to it while knitting at the same time. I know I can do stitches successfully with music, and even with football narration from the TV. This challenge will be actually paying attention to the words I’m hearing while continuing my Knit-2-Purl-1 pattern. Hell, if Judas Priest didn’t disrupt it, a fun mind-stretch of a story would seem pretty weak in comparison, right? 🙂
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