zen.org Communal Weblog

B built us a MythTV box, and did a lot of the documenting here. Today P turned on the tv and found that the recording files were there, but were empty.  Now, I’ve only had one cup of tea, so I’m not firing on all cylinders, but something at the back of my mind said “I bet the HD is full.”  And it was. Phew. /deletedeletedelete

I have  a lot of things I have to learn.  I know that B added some channels to the Myth setup a couple weeks ago, and it took him something like 2 hours.  There is going to be a day when I shut down the shuttlecraft (our Myth box), but I want to prolong that as long as possible. We’ve used the Myth interface for so long, it would be strange to move to something else.

Maybe I can teach P Unix, and he can play with MythBuntu?

My dear friends Michael and Christian plus Walter and Mary helped put together the booklet for B’s service.  You can look at it here.  I hope you can see the joy that his life brought us.

Planning on getting the speeches once they are done, typing them up, and uploading so everyone can share in the celebration of…so so much.  You all have said it in the comments over the past week, using better words than I ever could.

From rip.ie:

Removal on Saturday from Quinn’s of Glasthule to Mount Jerome Crematorium for service at 2pm. No flowers, please. Donations, if desired, to Educate Together.

I can’t thank everyone enough for all the kind words, thoughts, prayers, and practical stuff over the past few days.  I’m having problems with words, but thank you all.

My beautiful, smart, funny, geeky, blue-eyed, bearded, amazing husband died last night with me and two of his aunts holding him.

last night, B was complaining of a headache. He got sick a few times, and when I went back into our room to check on him, something had changed. I don’t know if it was his eyes, or his mouth, but something was wrong. He tried to sit up, but couldn’t use his left arm. I asked him to squeeze my hand, and he couldn’t. I grabbed the phone and dialed 999, and, for the first time in my life, ordered an ambulance.

It was the right thing to have done. The insanely high WBC have invaded his body. They helped burst a blood vessel in his brain, abd he ended up having a massive bleed, also because his platelets weren’t very high.

He was responsive at the beginning, like while we were in the ambulance and in A&E being assessed. But now, 24 hours later, he hasn’t opened his eyes in a while. He can’t talk, abd his left side has been compromised from the bleed. He’s obviously been readmitted, and while our lovely care team on Anne’s ward tried to get him in, they just couldn’t get a bed available. So we’re on a different ward, and have family and close friends around. His brother and mother are flying in, and my parents as well. We were lucky that my Dad happened to be visiting right now, since he stayed with the boys while I was in the ambulance and hosp.

The doc, who we both respect, told me this morning at 3am that its a question of hours, not days.

Since yesterday I’ve had a bruise on my left arm by my elbow, not caused by any bump in particular. To make the day more interesting, I got a higher fever (39.4), which we were able to reduce withcold presses, drinking cold water, and finally taking some paracetamol (acetminophen). I was really tired in the early evening, took a bit of a nap, but at 11 was sleepy again, which was different from normal.

This morning my temp was back down to 36.5. But we found some new bruises, a few on my legs and a couple on my arms. The doctor had warned us last week that a primary side-effect of the Hydrea oral chemo would be a risk of platelets going down, so this seemed to fit. (Low platelets can prompt inexplicable bruises appearing.) When we were talking about it then, the doctor said they’d just do regular blood samples in the Day Ward and top up the hemoglobin or platelets as needed.

Why the concern today? One of my biggest fears is a repeat of the retinal hemorrhaging which happened at the beginning of my first treatment back in March—caused in part due to the really high WBC and low platelets. So E and I decided the best thing to do today is to go in to the A&E (Emergency) department and just get the bloods done now, and either they’d find I needed more platelets, or it would relieve the worry. The alternative would be waiting until tomorrow and bringing it up at St James Hospital while learning more about the clinical trial.

Luckily Elana’s father was able to make a stop in Dublin as part of his trip back from his ongoing research work in Greece. So he was more than willing to mind the boys while we went in to the hospital, and my three aunts were also coming by to see both her Dad and the boys in the afternoon. All of that helps a lot with accepting the time we have to spend here waiting.

The bloods came back decent: hemoglobin at 9.3 (they want it over 9), platelets at 17 (okay for minimum of 10, but over 20 is better), and white cells at 85. That’s still much higher than the 20-30 for normal counts, but it’s got a positive: a few days ago it was 115, prompting the increase in my dosage of the oral chemo. The increased dose is doing some of what was intended. The bogus cells generated by the leukemia are still happening, but the chemo is slowing some of it down, and helping to reduce the crowding of the bone marrow with those bad cells.

The haemotologist upstairs in St Annes Ward (where I’ve spent most of my time these past months) said they want to boost my platelets and red cells. So I got one bag of platelets, and about 2-1/2 hours left of red blood cells. Taking longer, all-told, than I hoped more than six hours ago, but glad we did this.

When in doubt, READ

I’ve finished new Dubliners, an awesome collection of short stories (modeled on Dubliners by James Joyce) which was compiled and edited by our friend Oona Frawley. I can’t recommend it enough, particularly as a gift for anyone curious about modern Dublin life. The authors include Maeve Binchey (Circle of Friends, among others), Joseph O’Connor (author of Star of the Sea, one of my favorite books), and Colum McCann (wrote the awesome Let the Great World Spin).  It has helped pass the time perfectly.

OK, plug finished…

We realized that we hadn’t put an update up, so here you go!

It’s been a rough week, obviously.  At the same time, the amount of caring, love, support, kindness…it has been overwhelming.  Thank you all so much for *everything*.  We can truly feel your vibes coming from all corners of the Earth, and it means so much to us.

We have a meeting at St James’ Hospital on Monday morning, to see if B meets the criteria to join a clinical trial there.  As our (fill in) doc said on Thurs tho, “It’s not a cure, but it might give you more time.”  He is a kind man, but also very direct.  So we’ll see how that goes.

On Monday he started B on 2 oral caplets of chemo, and at our Thurs meeting he upped that to 8.  Yes, 8. I found out today that B’s WBC yesterday was 115. He was admitted in March with a WBC of 110.  However, his platelets and his Hg were both up, without needing transfusions.  This is good, cause it shows that the good cells can still be generated, and aren’t being fully crowded out by the immature WBC.

We’ll see what the blood test on Monday comes back like.

Beyond that, my father is arriving in a few hours to stay for a bit, on his way from Athens back to the US.  It will be great to see him, mainly cause he’s my Dad, and also because he had cancer when I was about P’s age. A bit of his insight will be helpful as well, but also we just like being around him.  Other members of the family are planning trips too, which means a lot to B.

So the weekend is one of quiet and calm and a bit of goofy (that would be my Dad). Which I think is what we need right now.

We also wanted to say many congrats to our lovely friends Jimmy and Michael, who were civilly partnered last week. They have been together as long as B and I have, and we are so proud and happy for them.  Love you guys!!!

It’s taken this long to be able to share this.

We learned last week that the doctors believe my leukemia is too aggressive for successful treatment. Any further chemos would do more damage to the good bone marrow cells, and still not stop the bad ones. My diagnosis grew by a couple of words: Primary Refractory Acute Myeloid Leukemia.

On Wednesday they saw my white cell count jump from 0.4 to 1.0 in a day, which is not the normal rate of growth—it should go up by tenths, over a few days. The haemotologist said he wasn’t going to make any judgements until they see the numbers from the next day’s blood sample. On Thursday morning, the liaison nurse came to tell me they saw them move from 1.0 to 1.9—in one day. The consultant doctor was going to look at the blood sample under a microscope to examine it more closely, and then he wanted to meet with Elana and me in a couple of hours.

That’s when we learned the third round of chemo, some sort of industrial-strength version, hadn’t wiped out the leukemia cells and that they were there in full force, despite the power of the treatment.

I’m not eligible for stem cell transplant unless they could have gotten my current leukemia into remission (less than 5 percent of blast cells in the bone marrow). But that hasn’t happened, and they believe they cannot get it there.

I was discharged from the hospital today, and prescribed hydroxyurea, a tablet form of chemo which is intended to slow down the generation of the immature white cells, and hopefully at least reduce them a little bit. I’m going in next on this coming Thursday, where they’ll take a blood sample and in particular make sure my platelets are okay, since that medicine’s major side-effect is reduction of platelets.

The doctor said if I’m able to stay healthy and avoid infection, we’ve got a window of up to six months—if we’re lucky. Right now, I feel fine, and will be trying to do what I enjoy and be with those I love as much as we can make possible.

I’m so sorry this is the way so many of you are learning about this, but it’s as close as I’ve been able to come to actually saying the words, particularly with any frequency or involving more than one or two people. Or even acknowledging what’s happening. Part of it is still very surreal, though I’m making progress on that.

Don’t stop your positive vibes, prayers, karma, lamb sacrifice, and ritualistic bonfires. I am still happy to accept any and all donations.

B

The last few nights I’ve been able to sleep at home, and just go back into the hospital to do the blood samples to look at my hemoglobin and platelets counts, get antibiotics, then come back.  So we’ve just been calm and quiet at home.

Holding steady, or as the haemtologist said, “Keep going!”  No fever for at least three days straight, and one of the markers or primary indicators they’ve been following in my blood is reducing, showing the antibiotics are doing their job and the infection is on its way out.  My white cell count reached 1.0, showing progress, though the neutrophils aren’t budging yet.  Some time in the next week or two, to be realistic.

In case anyone asks (which they have some of you), I’m still here because of my body, not because of any nurse or doctor.  All of my cell production basically stalled when they applied the chemo, which happens each time. So I have absolutely no immune system.  Because this was a heavier dose of treatment, and more because it was my third course of treatment inside a 3-month period, it’s taking a while for the bone marrow to regenerate and be productive. All we can do is wait, until the cell counts are high enough that it’s safe for me to be even out of this room.  I’d catch everything which most wouldn’t.  (Children and the elderly are always warned about risks in places for exactly the same reason—weaker immune systems.)

Best Book Ever Written

If you’re still trying to pick a summer read, can I humbly suggest Love in the Time of Cholera by Gabriel García Márquez, which I’ve just finished.  I’m done, but so wish I wasn’t.  It’s the most beautifully written book I’ve ever read, and I don’t want to accept the end of those incredibly crafted words.  It’s a perfectly sewn mixture of the past and imagery and love in all forms, perfectly rendered.

I didn’t want to skip a single solitary word because, had I done so, I’d have accomplished nothing more than steal from myself an important part of the whole experience.

Every word in that book matters.  Every word is there for a reason.