zen.org Communal Weblog

Just got the new numbers from the team, things are looking good…his white blood cells are now at 18.6. This is getting closer to “normal”, tho we’re gonna go past normal and wipe ’em all out. His red blood cells are at 5.5, which is quite low and effecting him some. He’s really tired and they don’t want him to get out of bed anymore for any reason, and they have him on the nose oxygen thingie to get his blood oxygen up. Both of which are normal, from what I can tell. He’s to get a transfusion later today of some red blood cells, once his fever goes down some more. He didn’t manage much lunch, but tried valiantly. I was here for his next dose of Daunorubicin, in two giant syringes that go into the central line. He’s now fallen back asleep for a bit, they are about to give him more antibiotics for his fever, as they can’t give him the transfusion until the fever is down some.

He also mentioned that his vision is a bit funny (don’t worry, he told the docs). His skin is very pale, slightly yellowy. I’m glad he’s sleeping, cause the more he sleeps, the faster it will all go for him.

Yesterday he was pleased to find out Ruairi Quinn is minister for education, he’s looking forward to Labour keeping their promise of recognizing Educate Together as a second level patron.

Remember, if you have questions, please ask in the comments of the posts, cause others will have the same ones and we’d love to get everyone informed at the same time.  We also have more than a few medical friends who might be able to answer some on here, or correct if info is wrong.

My dad asked: “This was all caught so so early, like in a beginning stage – how does that play into the medical conversation?”

Part of the name of his type of leukemia is “acute”, which means sudden onset in this case.  When B went into the hosp back in December for the campylobacter (food poisoning), they drew blood then to try to figure out what was going on.  When Dr Kamal came to give us the news on Monday (it might have been Dr Kuan, actually, but no matter) I asked if there was evidence of this in his bloods then.  He said that they went back and looked and there was NO evidence of it.  B was released from hospital then on December 16.  So on that day there was no sign of it.

B did have some unexplained bruising last month, but we just put it off as part of his short term memory fun. That apparently is another symptom of AML, which of course we didn’t know at the time.

As for the medical conversation, I don’t think anyone medical has actually said that we caught this early.  They’ve more said that it’s been caught, and now they’re going to treat it. I will try to ask today, if I am there when the doc is around.  Can anyone add more in the comments?

Before I forget, these are the pics the boys drew, and were we put them on the wall next to B.

Patrick's drawing

Eoin's drawing

Everything on the wall

On my third trip into see B today (first was with P, then back to talk to the social worker and hang out, then back again after the boys were in bed), we got good new: his white blood cell numbers are dropping already.

He was admitted with a WBC level of 101.5. Today it is 79.2. We want them to drop, in order for new cells to grow and see how they regenerate (there are enough docs reading this to tell me if I’m incorrect). As a side effect, his red blood cell count is also dropping; he’s technically anemic. They will give him a RBC transfusion once the WBC reach a certain level (no, I didn’t ask, it was a lot to be scribbling down).

There was a lot of fever today, and he’s looking more uncomfortable and really not that happy. This is normal, the fevers, and he’s on paracetamol (Tylenol) and 2 antibiotics to combat the fever some. Fever is normal, the lovely night nurse told us, so we are taking it as B is totally normal. For once in his life. 😀

We got other good news from family too (/waves to D&D) and we will take any and all good news that appears.

Also, shout out to Walter (thanks for the lift), his daughter Third In Command for staying with the boys tonight, and Declan, for putting out my green bin while I was away.

And now, as the night nurse said “You look knackered!” Very little food for the day (sorry, no, I really am trying to eat but everything makes me think I’ll be sick) and very long day equals Elana coming down with a cold. So off to bed for me and hopefully for you all too. B took a sleeping pill tonight while I was there, so I’m pretty sure he’s deep in dreamland.

Today has been pretty easy-going, compared to the days before it. I woke up at 6am having to pee a few gallons, and by the time I got back to bed I found I was having trouble breathing. It felt just like an asthma attack when I was little.

I told the nurse, who got the on-call doctor to come and check me out. I could inhale, but exhaling was really hard. He listened to my chest, checked my temperature and blood pressure, did an EKG (with little sticky metal jobbies to do the reads, all of which yank out chest hair incredibly well), and in the end said everything else seemed okay. It’s traditionally one of the ways anxiety manifests itself when someone’s mind is trying to handle traumatic information. Another time in the day when I had to go to the bathroom, I found my heart absolutely racing when I got back to my bed. Same deal. All expected, and they said I shouldn’t try too hard to chill out—just let everything take its natural course.

I slept reasonably well through the night, even without the sleeping pill which was offered (“refused” was the nurse’s way of phrasing it, making it likely I’ll accept it tonight). However I had a bit of a fever, which made me overheat and sweat. After that breathing stuff, my energy was absolutely gone despite all the sleep I thought I’d saved up. I was able to fall back to sleep a little, but had to go slowly.

Patrick was able to come visit today! Elana had done an amazing job of talking to him yesterday about what was going on, and he showed that he’d been processing some of the information, and didn’t look upset. They were here for about 45 minutes, in which he and I got to talk about all sorts of things. I showed him the view out of the window I’m near in my room, which is a really pretty view of the Dublin Bay and Howth.

He asked me what the thing patched on my neck was. I lifted my shirt and explained why the central line was there. He didn’t look scared, which was a great relief. He then noticed the back of both of my hands were riddled with little red marks where they’d been trying to draw blood before the central line went in. I told him they had to do it to try to get blood from me. He thought for a second, then announced, “That’s just MEAN! Why can’t they be more careful?!”

The time flew by, but it felt wonderful to get to see him. Might be able to see Eoin, age 4, tomorrow. Both of the boys made be get-well cards on big sheets of paper, which are now taped up onto the wall by my bed next to a picture of them from when I was in Gorey last year for an Educate Together Board meeting and E brought the boys down to pick me up.

On Tuesday, I got the name of my competitor: Acute Myleoid Leukemia.

That day there were a bunch of things due to happen.  Aside from a bunch of blood tests, they needed to do a biopsy of my bone marrow to be able to properly identify which kind of leukemia I have.  They also said they had to put in a Hickman central line, instead of the normal cannula which was put in on Day 0.  This runs a catheter into a major vein with two dangling tubes hanging out of the chest so it’s simple for them to draw blood, add medicine, etc., instead of repeatedly pricking little spots all over the back of your hand.

Taking the blood samples was a real pain because my dehydration made it hard for the phlebotomist to actually get a usable vein.  She was also supposed to take a whole bunch of vials, but it wasn’t working out.  The nurses checked with the doctor, and they collectively decided to only do 2 or 3 of them in the morning, and wait until the central line was in since it’d be really simple to draw blood after that.

Doozy #1

The biopsy was by far my oddest experience, ever.  (Apparently most of the initial odd experiences will be centered on this particular day.)  They use the pelvic bone, and applied  a lot of local anaesthetic.  The doctor doing said it shouldn’t be a sharp pain, but I’d definitely feel something.  For an example, he said it’s similar to when a doctor pulls a tooth.

He kept loading anaesthetic until I confirmed that I didn’t feel anything.  To get at the bone marrow, they have to get through the skin layer and then use some monster of a needle (which thankfully I didn’t see) to penetrate the bone and get at the marrow.  I expected the marrow result to look something like breadcrumbs, for some reason.  But it was more like watered-down blood.

During the process, which took about 10-15 minutes, there were two instances where I could actually feel what must have been the flow of the marrow in the bone, or at least some impact on the nerves around the bone.  They weren’t expected, and quickly corrected, but wow did they happen.  Both of those times, as I told the doctor later, I felt what must have been the time you say “10” when asked, “on a scale of 0 to 10, with 0 being no pain and 10 being unbearable pain.”  Each was for less than a second, but it was like someone had put a blindfold over my eyes and could be aware of absolutely nothing, save what I was feeling in that instant.

Doozy #2: Central Line

I had a small break after the biopsy was done, then they rolled me (lying on my bed, making me feel like some spoiled celebrity who likes to stay in bed, always) to the Radiology department where they were to put in the Hickman central line.  It was a big operating room, and looked nice and clean and new—not the ceramic tile TV crap.  The central line gets put in through the neck right near your jugular, and comes out a little bit further down in your chest.

Wise-ass male me had to accept that the nurses had to shave away a bunch of chest hair in order to actually do it.  In retrospect, it was better—the number of times I’ve had sticky tape yanked off my arm/chest/tummy in the last few days makes me really happy that they’ve gotten rid of some of it.  (Yanking off those things always reminds me of just how much I’d never want to be a woman buying into the obsession of going for a waxing.  Jeeeeeezus that hurts.)

My head was tilted to the left so they could put it in the right side of my neck.  (Anne Rice moment.)  They draped a few sheets of some kind of paper over where I could see, letting me look out towards the side of the room but nowhere else.  Then came the anaesthetic, and a funny experience where the anaesthesiologist (?) began asking where I lived, how long I’ve lived in Ireland, etc etc.  I remember answering a couple of the questions—and then woke up out in their department’s open area back on my bed.  The skin around where they did this is still a bit sensitive, but that’ll go away after a couple more days.

All of this before lunch.
Q-Tips

Every Tuesday, they give people four sanitary Q-Tips with plastic tubes to hold the result.  The intent is to test every patient in the hospital so they can catch any cross-infections or new infections which might be contageous.  With one, you swab in both of your nostrils.  With another, you swab both sides of your groin.  (Warning: I’m not gonna go too far, but I’m also not going to omit, either.)  The last two are two external rectal samples.  Every Tuesday.  I’ll be doing this for weeks, and I don’t think it’ll get any more comfortable. 😉

Giving It A Name

In the early afternoon, my doctor and her impressive team of like six people all appeared: the biopsy identified my disease as “acute myeloid leukemia”.  This is the better of the two choices for what I could have, and there is a 70% success rate for people going into remission after their first treatment.  (Being a fan of Dollhouse http://www.pressthebuttons.com/2009/05/would-you-like-a-treatment-anticipating-a-dollhouse-video-game.html , hearing things about “treatments” is really entertaining.)

Chemotherapy would start that night.  It’s not the getting-zapped-with-radiation I expected it would be.  Instead, it’s two sets of liquids.  The first, Daunorubicin, is in a big tube of what looks like Kool-Aid and inject it slowly through the central line.  It turns your pee red—they told me not to think I’m peeing blood, it’s just like food coloring.  There’s a second, Ara-C (Cyterabine), which is a small liquid bag which is put in over about 30 minutes via the normal IV line (like the one they use for Potassium Chloride and Sodium Chloride).

I’ll be getting the chemo for 10 days, then they wait for 2-3 weeks to make sure my blood cell counts are back up to where they should be.

There’s a possibility of nausea at some point in the next week or so, and within the next two weeks I’ll start losing my hair.  How ironic: on New Years Eve in 1999, I said I’d try a resolution to shave off my beard and see what it’d be like to live without one.  That lasted at most 3 days–apparently I looked too much like my brother, which just weirded her out. 😀  So this time I can’t back out; having had a beard for more than 20 years, I’ll probably have trouble recognizing myself.

Brendan has actue myeloic leukemia. He has been admitted to St Vincent’s Hosptial in Dublin, on St Anne’s ward. He’ll be here for at least a month, as he started chemotherapy last night. While he’d love to see everyone, and say hello, right now it’s just not possible. Patrick was able to come in this morning for about a half hour, and tomorrow we’re hoping Eoin does too, if B is strong enough for it. Again, that’s what this blog is for, virtual visits to him (and questions) and he or I will answer as much as we can. We think the hospital has blocked Facebook, so posts there won’t get seen by B, but he does check Twitter a little.

Today we met with a social worker to discuss what is going on, and how they can help us with pretty much everything. It was wonderful to know that other safety net is there (beyond you all, I mean). The meeting wore out B quite a bit, he’s napping while I type this next to him. He has a chest xray scheduled for this afternoon, so he’s saving himself up for that.

I’ll be heading home to the boys soon, and hoping I can come back in tonight. His room is lovely (it has a view of the bay) and he has a roommate who seems nice, but sleeps a lot.

P has a playdate today, and tomorrow as well. Eoin does too, which is great for them. Yes, they know. Eoin is too young to get it, but P got it pretty well. Seeing B was helpful for him I think, esp since Eoin tomorrow might end up being his last visitor for a while other than me.

Cards, emails, videos, stupid cat jokes, all are welcome (flowers aren’t allowed on the ward). We do feel all the good vibes coming from all over the world, and it helps keep us afloat in this wild sea.

We’ve made it through Day 1.

Yesterday was Day 0, when the doctor said I didn’t have the flu—instead, because of an insanely high white blood cell count, I had some kind of cancer.  Pause for about 5 seconds, then he specified: he was fairly certain I have leukemia.

The world and any concept of reality kind of fell to a crawl for both of us; the world went yellow for Elana, and she couldn’t breathe.  I thought I was hallucinating—my face expected the doctor to quickly correct himself, after realizing he was talking to the wrong people.  Unfortunately, his diagnosis was for me.

Week – 1

On a 4-day work trip to Eindhoven in The Netherlands, I started feeling constant headaches, didn’t have much of an appetite, and a regular dry mounth no matter how much water I guzzled.  Despite not feeling nautious or having diarrhea, I figured it was some variant of the flu which would go away.  But the consistency of the headaches, and the fact that other symptoms, like coughing, only happened once in a while.   But the other catch was, I was constantly exhausted.  I had trouble sitting up for an hour, but I was also waking up at 3 or 4 in the morning, feeling dehydrated.

Day 0

At the encouragment of some friends, we made an appointment with our GP to let us at least get some meds to make the headaches stop.  The recurring headaches worried him, given my history of a traumatic brain injury back in 1993.  (Here’s some interesting timing for you: an interview I did a couple of weeks ago with Dick Gordon, a nationally syndicated radio show.  It aired online—today.)

I was getting dizzy when he tried to draw a blood sample, and even if he could take it, we’d wait until the late afternoon to get the results.  Instead, he suggested we go into the St Vincents hospital in Dublin where they could do those tests much faster, as well as any others.

We went up to the A&E (Emergency Room) at about 10 in the morning, and I spoke first with a triage nurse, and then with a triage doctor asking me for all sorts of details.  She ran me through a battery tests we realized were to make sure I wasn’t suffering from a stroke, and then asked a bunch of other questions.  She wanted to talk to the Registrar (sort of the on-call A&E docter), who came to ask lots of the same questions.  He decided they should get some blood tests done, and would come back to us with more information.  The all had the theory that it was some sort of flu variant.

A while later, he came back, introducing the doctor who’s in charge of Hematology.  He’s the one who tried to ease us into the information, but at one point he had to just spit it out.  He said because of the condition, we had to start working on it immediately.

They moved us to a bed in the hall (Irish hospitals are overcrowded), and after a wait they offered us tea and toast.  We could sip the tea, but neither of us could stomach the toast.

Finally an administrative secretary said they had a room for me, in their cancer ward.  Can’t really remember a lot of detail of exactly what happened between then and when Elana finally went home and I lay down to try to sleep.  I know I was set up with a saline drip, and had to not drink or eat anything starting at midnight for procedures the next day.

Trying to sleep last night was hard, waking up constantly.  Lots of it was to pee, but plenty was just my hyperactive brain hitting any and every piece of information you can imagine.

More about today (Day 1)  tomorrow.

We’ve passed through the 2 hardest days in this entire journey.  And we’re still here.