zen.org Communal Weblog

No change in eyes, but wanted to try this… am curious what it’d take for a few sentences.

Woke at 6 after decent enough to sleep. Had a chat with nice Nurse S about carbonated vs still water. I told her I really can’t drink the carbonated any more cuz it leaves mouth dry and doesn’t come close to quenching my thirst. I’m to ask the doctors if the Nash’s Still is an ok replacement for the Nash’s Sparkling.

Enjoyed watching Rugby last night. I could identity some of the players by just looling, which was encouraging. Even saw the ball—a couple of times. Heh. But a little distraction is nice —or more to the point, something to do Pruett eyes, a bit, was cool.

Morning blood draws are done, as well as Joe Random antibiotic….there are so many it’s hard to keep track. Tho I bet there’s a list in the blog somewhere.

Taking breaks between pieces of writing. (I also expect some odd word substitution by android typing software which I won’t catch.)

As a new parent with the birth of our youngest, I got into the habit of cutting my own food up into small portions. This way I could eat my food with one hand while feeding him his own. To this day, I still cut mine up before eating —breeder or not. So cutting up my porridge into even hunks cracked me. Up this morning. So little point, yet the habit persists.

The St Anne’s Ward is divided into two parts which make up the third floor. The center area where the elevators are also has a big open rectangular room off of it. Crammed along the solid walls are nearly 20 chairs of different kinds. The third wall is mad up of institution-store windows showing you a panoramic view of… well, other hospital buildings. Not a holiday spot. 🙂

In front of the windows are two big TVs. When I first saw this, I figured it may be how they all watch a Rugby match togwther. Bzzt. The TVs are reportedly dead. If my eyes get better early enough, I still like my original idea of folks being able to watch something in here.

Typing this with my phone kinda worked, but maybe I’ll try my laptop next time.

That chemo really did a number on his brain.  It’s resolving some, since the chemo stopped last night, but once he starts acting “normal” (well, for him) I’ve realized how off he was.  Yesterday, I was getting nervous cause he was reminding me, when all grogged up, of my brother who had a traumatic brain injury from a car accident.  For those who knew Mark, he was talking like him a bit, really slowly, and moving so slow.  I had to translate what he was saying to the nurses.

Today he was a different man.  Not 100%, by any stretch.  But if we say yesterday was his “worst” day and say that he was about 20% on the Brendan scale, today he was around 75%.  He got another shower with a lot of help, he trimmed his beard (OMG, so needed it, even if his hair does fall out at some point), and before I got there he did one or two laps of the ward.  While I was there, we walked to the day room, walked back to the bed, he showered, then back to the day room again.  This is a lot of energy for someone who couldn’t really stand up on his own yesterday.  He did have a 3 minute catnap after our two hands of gin rummy, and from that he was energized enough to get through me chattering on about whatever. 😀

He’s still having the fevers, last night was up to 39.8C.  But there were only maybe 3 spikes, where last week we were looking at at least double that per day.

His numbers today are:

WBC 0.3

Hg 8.9

Platelets 51!!!!

Hopefully platelets will stay high, tho they’ll probably be a lot less.  Bloods are taken in the morning, and he had a lot yesterday for his scope.  Since then no platelets or transfusions, so we’re expecting his numbers to start to go down a little, until his bone marrow starts to make new baby blood cells.  The key is which blood cells he makes, and that will tell us if he’s in remission.  Until then, it’s a waiting game.  I forsee a lot of gin rummy, but am hoping that I can dress me and the boys in masks and bring them in for a visit.

For now, I’m checking out.  Starting to get a tickle in my throat, which means I’m coming down with something, so gonna go slurp on hot lemon and honey and deny a cold!

Today’s shoutouts: Liz, for listening; Anne for the laughs; Kamilla and Greg for the lifts for P; Aunt Mary for being with the boys; and B….for being B.

B was so out of it today.  By the time I got in this morning, I missed him by about 1 minute…he was heading down for his bronchoscopy, to get a bit of the infection in his lungs so they can find out exactly what the infection is and treat it thoroughly with the right antibiotic.  We won’t get results back til like, Tuesday, but still, it’s done.  So I was sitting waiting for him for about an hour and a bit, and when he came back up, ohemgee, he was *stoned* from the general anesthetic.  We had the same conversation at least 3 times today, each time it was new to him.  When I mentioned this to him, he started reenacting a video we have of him from when he came out of the aphasia, when his attention span was about 3 minutes.

He was weak and out of it for most of the day today.  One time he fell asleep in the middle of a sentence. Overall the procedure went well, and I don’t think he even had a sore throat.  He did say that he had one place that felt rubbed a bit hard, and that the infection, instead of being in one big lump, seems to have broken up a bit.  They pumped a bit of water down into the lung, and then suctioned out some to get the sample.  Maybe that broke it up a bit?

So I’m sitting there, cause I’m thinking that the last chemo he’s gonna get in this round is a big deal.  I made sure to be there for it, and it was kinda momentous for me.  Him?  He woke up for 3 minutes, and didn’t remember it an hour later.  S’ok, having him sleep through a day of being in the hosp is totally worth it.

Was a quiet day on the ward as well.  I think because it’s that weird day between a weekday holiday and a weekend, when things are supposed to be open, but most people won’t open cause they’re going away or they just don’t wanna.

So, anyway, he was out of it most of the day. Was grand.  Will be going back in tomorrow, as soon as I figure out who goes where…B’s aunts have the boys for the day, but there’s two birthday parties in there too (one for each of them to go to!) and we haven’t bought pressies yet! Must get more organized!!!

B’s numbers for today (you did read the previous post about what the numbers mean, right?)

WBC: 0.3

Hg 8.5

Platelets: 39

They gave him 2 pools of platelets today, before the ‘scope.  Nurse S said that they would give him 2 bags of blood tomorrow as well, to keep the Hg up.  He did have fevers overnight, including one that soaked his shirt this morning.  I’ll be happy when those are done with!

Today’s shoutouts: Viv, for the gorgeous dinner and the cuppa this morn; Student Nurse L, for the bit of laughs we had on a quiet day; Kamilla for being with the boys so much; and Magda, who we couldn’t live without!

Since B isn’t here right now (I just missed him, he headed down for his ‘scope as I was walking in), and we’ve had a few questions, it’s class time!  Sharpen your pencils now.

There’s been a few questions about the numbers that I’m posting, the WBC, hemoglobin, and platelets.

Let’s start from the beginning: leukemia.  Broken down, the origins of the word are leuk (white) and emia (substance in the blood).  White blood, aka large amounts of white blood cells in the blood.

WBC, the acronym I’ve used for white blood cells, are the main marker that B had leukemia.  Normal levels would be 4,500-10,000 white blood cells per microliter (mcL), which we have been shortening to 4.5-10.  When B was diagnosed, his white cell count was 100, or 100,000 white blood cells per mcL.  That with the headaches, the bruising, the exhaustion and the *low* red blood cell count (exhaustion and low red blood cell counts go hand in hand, as that means anemia) are all symptoms of leukemia.

Right now, B’s white blood cell count is 0.3.  This is good, because the chemo is doing what it is supposed to do, kill off the cancer cells.  But since chemo isn’t selective, it kills off the fast-growing cells in your body: the cancer, blood, and hair cells.  Hence why people end up losing their hair, and being super sensitive to fabrics, the labels and seams of their clothes.  So the chemo is also killing off the white blood cells.  Why is this good?  Because the cancer cells “don’t do the work of normal white blood cells, they grow faster than normal cells, and they don’t stop growing when they should.”

Again, since chemo isn’t selective, it’s also killing off the red blood cells.  Inside the red blood cells are hemoglobin protein, which carries the oxygen from our lungs all around our bodies and is iron rich. It’s part of the reason we have pink cheeks!  All that lovely red blood keeps us going.  If you are lacking in red blood cells, you become anemic, which isn’t good.  So they are infusing B with “clean” blood from donors, to get his red blood cells back up and keep him healthy that way.  Men should have a normal red blood cell count of 4.7 to 6.1 million/uL.  So when I say 8.8, I mean 8.8 million.

Platelets, I’ve learned, are kewl.  They are one of the keys to your blood clotting.  The reason they’re called platelets are they look a bit like a plate, where they are roundish, more jelly doughnut like, but more squooshed in the middle.  When they bump into each other, and their outer “skin” is ruptured, they turn more into an octopus looking cell, and clump together.  There’s how your cuts stop bleeding!  Platelets are effected by the chemo too, so to make sure he has enough and to make sure his blood clots where and when it needs to (see, his eyes thing is because he was low on platelets and there was minor hemmorhaging).  So today he got extra platelets because he was having the ‘scope, and they wanted to minimize the chance of any bleeding. Normal platelet counts are 150,000-450,000 per μl (microlitre) of blood, which we’ve been saying as 15-45 for the count. The bags of platelets are neat looking, btw.  It reminds me of cold honey…you know when it’s crystallized slightly?  And sorta thick?  That’s what it looks like in the bag to me.

One interesting thing about platelets: once a woman has been pregnant, she cannot donate platelets.  There are antibodies that are created when pregnant that stay in your body, and once you have ’em, no more donating.  The largest group of donors are, obviously, men.  And you can specifically donate platelets…so please do.

Those are the important numbers, really.  And, again, I know there’s a few oncology nurses reading this now, so please correct me if I’m wrong!

I first want to reiterate something: Brendan does not want visitors.  At all.  No, not you, or you, or even you.  No one but me.  Trust me, I ask him every couple days, but he doesn’t want to see anyone.  Due to an incident last night, he has told the nurses that no one is to be admitted in to see him unless they have my prior written consent. This is HIS choice, not mine, and it must be respected.  The most important thing is his health, and this effects both his mental and physical health.  Please don’t turn up at the hospital, you will be turned away without seeing him.  At the same time, food/flowers aren’t permitted either.  Flowers aren’t allowed on the ward at all, and as he is on a special diet because of being neutropenic, so most foods he won’t be able to eat.  And to be honest, he doesn’t have a huge appetite, so please save it for the celebrations once he comes home.

That said, today was a quiet day.  Part of it is because it’s a national holiday, so there most of the Monday to Friday staff of the hospital were home.  Also because B didn’t have that much going on today.  Chemo, some antibiotics, and a couple bags of platelets.  That’s sorta it.  He was much more relaxed today, being off the oxygen for a while again, and just chatting. We tried to make the radio work on his phone (still, no.  Stupid EDGE in the hospital.) We went for a tiny walk, cause he wasn’t hooked up to the IV, and played a hand of gin rummy.  That sorta exhausted him, but he really really wanted to do all of it.  I don’t know if he’s feeling better per se, but he was able to get out of the bed and move around, which is big and made him happy.  His numbers today were:

WBC: 0.3

Hemoglobin: 8.9

Platelets: 36

The nurses said that he’ll get two bags of platelets tonight, to keep his platelet count up, and one early tomorrow morn.  Don’t forget, he’s getting a bronchoscopy in the morning, so they want his clotting factor (which platelets help with, if I’m getting this right) to be up high in case of…anything, I guess.  We won’t think about that. The bronch is to check his lung infection, possibly to get a sample of it, so that they can really target the infection and wipe it out.  Any infection right now is dangerous for him, having almost no immune system (another reason to keep Eoin away…4 year olds are germ factories.  But he’s a cute germ factory.)

By the time I head in tomorrow and get to him, he should have just started his last bag of the first round of chemo.  It seemed so far away before, and now it’s here.  After this, it’s two weeks of sitting and waiting and seeing what his counts are, plus the platelets and blood and antibiotics.  We’ll know sometime in a week how things are looking, I think.  His lovely bro has already had his tests done to see if he’s a bone marrow match, waiting for those results still I think.  Probably get those faxed to the doc here tomorrow.  We hope it doesn’t get to that point, but also we have to be realistic and know that everything is on the table until we get more numbers.  Once again, we’re just looking one, maybe two, days ahead of now.  If we get beyond that, well, things can always change, so there’s almost no point.  We shall keep doing what we’re doing, as it seems to be working so far!

Today’s shoutouts: All three aunts (H, M, S) who came to be with the boys so I could head in for a couple hours today, even with a tummy bugged Eoin; Anne, for the lovely fish pie; Derry, for being Derry; and Declan, for coming down and checking in every night.

Brendan is a little slow, we just realized.  Yea, verily.  Guess it’s, ya know, the chemo.  Good excuse for everything.  But it finishes in two days, so what will be his excuse then?

Right now, he’s only allowed sparkling water because he’s on a clean diet.  He now hates sparkling water.  We asked yesterday if there’s anything else he can have, and apple juice was on the list.  I ran downstairs and got him a couple juice boxes from the coffee shop, and today brought in a liter of apple juice (has to be drunk in 24 hours tho, so start chugging, B!).  He’s worked out that sparkling water with a splash of apple juice is “refreshing and enjoyable”.  He says the key is flavour, since the water is really just blah.

I caught a glimpse of the scans from yesterday, just the brain one.  I asked where his front temporal lobe was, and they showed me the comparison of the right temporal and left temporal lobes.  I don’t know if it’s regrown or what, but there was a right-shaped shadow on the scan.  Wild. The chest scan shows that there is an unmistakable infection in his lungs.  But as he’s on super antibiotics and antifungals, they’re expecting to wipe it out pretty simply.  Even with the markers for infection down through the floor, there’s still one there.  The good part is that he doesn’t really feel any infection so it’s not bothering him, and he’s been off the oxygen for most of the time I’ve been here (his O2 sats were 100%!  Overachiever!)

On Friday he’s having a bronchoscopy, to try to get a better idea of what the infection is.  So he’s fasting from midnight on Fri morn til 6, when the scope will happen.  Better than today, when they tried to schedule one right after he ate lunch and took a nap…I had to empty all his drink cups while he was asleep and tell him he couldn’t have anything to drink when he woke up!  He was BUMMED, but then, they couldn’t do it tonight and he had some juice and life was good.  Dr O was really pushing to get the scope done tonight with the department, but I think everyone’s okay with it waiting a bit.

We now have to say hi to all the nurses who have been looking after B, as they’re starting to get competitive about who’s mentioned in here!! Nurse D is behind me right now, checking B’s levels (his O2 sat is now 95%, slacker). Nurse S was very kind and gave us each a bun (cupcake) from another nurse who brought them in today.  Nurse N gave him excellent care earlier in the week when she was looking after B.  Nurse L, who I think is in charge of the ward right now, is quiet but once in a while he laughs, which is nice.  Hope they start commenting and telling me if I’m getting my info right!

He’s gotten 2 pools of platelets today, which is great.  Chemo too, but overall it’s been a mellow day today. Fever isn’t as present (he had one spike, but looks like paracetamol brought it down).

Levels today are… /drumroll

White blood cells  0.2
Hemoglobin  9.2
Platelets  38

B got a card yesterday from all the teachers and SNAs and admin at the school.  You all are lovely, thank you!

Tonight’s shoutout is to the lovely L, who dropped off a chicken curry and rice at the house tonight. :-*  And to the nurses, all of ye. You’re the shizzle, I don’t know what we would do without you!

I wonder what B will say when he realizes that all his friends and family now know that he had a shower?

It made a huge huge huge difference to him.  It took a while, and was awkward keeping the damn central line dry (B held a towel over it), but I scrubbed that head with shampoo and rinsed it out and all I heard was a deep “Aaaaahhhhhh……”  Clean clothes, clean sheets, and dinner waiting for him when he got out.  What else could a guy want?

While he was eating his dinner, and I was packing up my stuff, one of us said something pithy, and he smiled.  He smiled that great crinkly-eyed Kehoe smile that I love, where he’s truly happy for a moment.  I haven’t seen that smile in almost a week now, and seeing it again gave me more hope than almost anything else.

He got even more platelets today.  Interesting fact: if you have been pregnant, you can’t donate platelets. It changes something in the physiology of the platelet and they can’t use it.  So most platelet donors are male. I looked on today’s bag and it had the donation date: March 10.  Amazing. Last week someone was selfless enough to donate, and today it is fortifying B.

Today’s shoutouts: Nurse A, who said she was going to start reading the blog /waves hi; Kamilla, for taking P after school and giving his bottomless stomach dinner; Anne, Viv and the DSP community, who I’ve been told have started a dinner rota for us; the talented Rachael, who strengthens me with her written word (yes, you.). You’re all superstars!

Oh, and no, no hair came out with the shampoo.  So he’s still fully bearded and haired…I think a bald B is something that would be interesting to see, but I’m not quite ready for it yet!

Apparently last night B had some weird dreams, like he said bad acid trip level dreams.  He woke up a few times with them, really freaked out.  He thought it was because of his medicine to bring down the fever, but talking to Nurse D and Nurse A, they said he just got paracetamol.  We realized all together that it was the fever itself (39.5C) that was causing the nightmares.  Which makes sense cause when he’s napping when I’m here, he moves like a freaking puppy, dreaming about chasing things I guess.

Today was a scan basically of him from the waist up.  Can’t wait to see those, if they let me.  They just want to make sure about if he has an infection: the bloods aren’t showing any infection at all, they think the fevers are a side effect of the chemo.  Which does make things interesting, but overall, if that’s one of the few side effects he has?  OKAY! We’re fine with that!  He hasn’t had any nausea or pain (other than blood draws and the bone marrow aspiration), which I’m really grateful for.

He’s resting again, now, because he had to stand up for the scans and hold his arms over his head.  Took a lot of out of him.

It was only a week ago.  It’s stunning, in the true sense of the word. One week ago we were happily ignorant of what was going to happen the next day. Wild.

Another nap

Longish day today, tho I’m not sure why.  Boys were back in school, so I got a lift in with the lovely M of the Minestrone Soup who was going to a meeting in town anyway.  Got to the hosp by 9:45! B had another rough night, lots of wakeups and fitful sleep.  40 deg (that’s around 104F) fever at one point, apparently.  I don’t like this fever thing, neither do his docs.  He’s getting constant paracetamol and we put wet cloths on his forehead to try to cool him down.  Part of the problem is that he can’t get blood if he has a fever, because they have to make sure that he’s not reacting for some reason to the blood itself.

So he didn’t look that happy when I came in, he was tired and a bit cranky.  I would be too, being woken up for blood tests, changing IVs, blood pressure, whatevers.  I just have the boys who wake me up at night :-).

He had a lot of blood tests today, to try to figure out where the infection that is causing the fever is coming from.  There are good and bad blood draws: good ones come from his central line, which means he just sits there and it happens and there’s no pain.  Bad ones come from his arms, the poor pincushions they are turning into.  It hurts him a lot to get the arm draws done, but he’s very good about it. Today, nurse N tried to get some and it just wasn’t coming out enough from his left arm, so she had to try again in his right arm, which hasn’t really been used for blood.  Which is good, I guess, cause maybe it’s less sensitive.  His hand is just covered in little pinpricks.  Part of it is that he’s losing some weight being in there and not moving around, so there’s not as much fat to cushion the needle, in a way.

He was to go for a few scans (brain, chest xray) to find the infection, but that got put by the wayside because of fever. So he was in the room the whole day, and we didn’t manage to wash his hair. /sigh

I think today was a day of ups and downs, but nothing major.  There was a lot of activity, but B didn’t really move.  Very odd day, actually.

I can’t find the paper that I wrote down his numbers on, but I think they were:

WBC: 0.3 (up slightly)

RBC: 9.5 (? might have been 7.5, but they are def up from yesterday)

Platelets: 22 (I think. Dr M said that normal is around 20, but she wants him up to 50)

Platelets

So while I was there, he had chemo, antibiotics, a bit of fluids, platelets, more antibiotics, plus the normal pill complement (antinausea, kidney protection, paracetamol) and his mouthwash and eyedrops.  One day I will write down everything that he gets completely.

Sorry this is so disjointed…I still need to make cupcakes for P for tomorrow (I’ve been putting it off for a week, this is the procrastinator kicking my butt right now), and my brain is all over the place.  And for all of you who have sent cards or dropped them in the letterbox, I’ve brought them all in to him (he loves the ones from the Burke-Kennedys!) and he’s been able to focus on each one.

Today’s Shoutouts: M of the Minestrone Soup for the lift, Jerry and Anna for having P for dinner, Magda cause she’s just amazing, and Grace with the suicidal dog for cracking me up a few minutes ago.

ETA: Just found the paper with the numbers on it:

WBC: 0.3

RBC: 8.8

Platelets: 31

Thanks for all the comments on yesterday’s post.  It’s nice to know you’re all reading!

Today was better.  I got into him early for an hour, while our friend D and her son hung out with the boys.  Weekends are going to be tricky, but we’ll work that out later.  So around 10:30, I go in and he’s talking to Dr M (not one of our normal docs, he’s the weekend hemo doc), chatting and talking about things.  B looked better rested, but still tired.  So we sat and talked for a bit, and he rested.  I talked to Dr M about things that family want to know (like what are the procedures for getting typed for a bone marrow transplant) and B just chilled.  His fever was on and off again, including chills that shook the bed.  He’d gotten more blood overnight (again, thank you Anonymous Donor) and some platelets.  Not a great sleep overall.  Nurse D and I worked out that B would get some paracetamol for the chills/mild fever just so he could rest, and Nurse D would keep the stuff done to him down to a minimum.  We also worked out that B thought that his bed had to stay at an angle for the oxygen delivery to happen, but D said no, it can be flat, we’re happy with your oxygen levels right now, it should be fine.  That’s when I realized how much the slight angle in the bed has really been effecting B…we put the bed flat and B sighed contentedly.

B put in his earplugs and curled up, and I left.

When I came back around 4:30 (the lovely Aunties Mary and Sheelah were with the boys at our house), B looked much more rested.  He was sitting with his back almost against the wall, propped up with pillows, and his feet flat on the bed, knees up. He hasn’t had the energy to sit like that (or the ability, with the angled bed) for a while. He looked nice and pink and relatively normal, except for the few times he’d look away from my face and I could see he was seeing something in his eyes I wasn’t.  It was almost like he was blind and couldn’t see past his eyes, if you know what I mean.  It’s scary, but he says it’s easier than focusing sometimes.

So he had napped for a good chunk of the time I was away.  We just sat and talked, he had his dinner, Nurse D came in to be a vampire and take some blood to check that there are no infections in his central line.  That’s the worst part, because D had to take it from B’s poor left hand, which has about 8 pinpricks on it where they’ve had to do that.  His veins there aren’t so hot, but D got it in and done relatively quickly, tho B did hurt a bit from it.

Tomorrow is hair washing day, which I’m slightly dreading in case we have hair-falling-out issues. But onward and upward, right?  Oh, his numbers from this morning are….WBC are at 0.2 (admission level: 101.5), reds are 6.8 (admission: 7.7, remember he was anemic when admitted, they like those to be closer to 8 or 9), platelets 22 (admission:117), and neutrophils (a type of wbc) are at 0 (they didn’t have an admission level in the chart I looked at).

So we’re getting closer.  Tonight was the beginning of day 6 of chemo, last chemo of first round will be the Friday morning dose.  Seems so far away, but as Aunt Sheelah said tonight, this week has totally changed over the week, and it has.  We’re in more of a routine now: I’ve worked out that I’ll go in on the Dart right after dropping Eoin at school, and Magda will get the boys from school and I’ll be home around 4:15 every day, maybe later.  Those are the best times for B, it’s when he has the most energy and it coincides so well with school.  Weekends will be a bit different, as will Paddy’s Day and the day after, but we’ll work that out later.  I want to be there early on Fri morn, as he gets the last dose of the first round.  Yes, I know it’s 7am then, but I feel like I should be there for the momentous occasion.

He’s in a better headspace right now, which is great.  He is looking for a good app for radio on his HTC, the one he has he doesn’t like, a big step when he said that he’s feeling overwhelmed by music a few days ago.  I’m going to get a few podcasts for him overnight (Wait Wait Don’t Tell Me, Stuff You Should Know, and I’m asking on Twitter for a good tech podcast) and we’ll see how that goes.  They’re not too long, and he can pause and rest any time he wants.

Had a funny moment with H, one of P’s classmates moms who I saw today.  She said “I don’t pray but all my good thoughts are headed his way.”  I realized that’s totally the Educate Together way…light on the praying, but all good vibes.  They’re working so so well, so if you could just keep ’em coming a little longer, it would be great.

Today’s shoutouts: the lovely Aunties, who are absolute stars; the Gibbons family for the hospitality and kindness today; the Delahunts for their hugs; Helen just for being able to say hi and park in our driveway; Dr M for being straight and filling me in on things; and the lovely Nurse D and L, for taking such great care of B.  Oh, and DOUBLE thanks to Mary, for the minestrone soup that was gorgeous (and is now gonegonegone.  I need that recipe!)