zen.org Communal Weblog

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…

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.

No fever today, got two bags of blood, and the regular antibiotics.  All good!  No inspiration from my muse, so I’ll keep it clinical. 😉

Day before yesterday I tried to upgrade the Akismet plugin used by our website; it’s what stops spam from appearing all over the place on the blog.

They’d changed their system a bit, to try to encourage more people to pay for their service (no blaming them).  This meant the existing plugin no longer worked, unfortunately.  But maybe it was a sign—I decided to try going without it, to see if we could just use the blog as-is.

Not a chance.  The spam comments started appearing so quickly, I couldn’t believe it.  We’re now giving Akismet $24 for a year’s subscription (they’re open to personal users picking $0, still, but we want them to stay in business, too, or we lose).  But it’s already paid off—since I activated it, their plugin has blocked more than 12,000 spam comments.  Had I not gotten it going, I’d be manually processing every, single, one, of them.

Screw that.

Nothing interesting today, so I’ll be brief … no fever, 35.x all day; around 7:30 I was at 37.5/37.6, but they’ve not come back to remeasure so apparently they didn’t think it was going up.

Spent most of the day doing too much hacking on the computer.

They’ll find a therapist for that, too, I’m sure. 🙂

Last night I was too tired to try to write, so this post will be a mix of yesterday and today.

Most of both days progressed with no fever, which was encouraging. They’ve had similar delivery of the antibiotics, which are hopefully doing their job. By late afternoon yesterday, though, it decided to spike back up above 38, so they went with paracetamol and blood cultures. I was retaining water, so they gave me a “water pill” to help urge the fluids out. The fever let up some time during the night, but settled down enough so it wasn’t there this morning. I was told I managed to fill 3 1-liter jugs in the course of about 2 hours after that magical water pill, though.  I’m retaining water again today, “positive” by about 1.4 liters, so they’re giving me more of the same.  Haven’t produced the same yet, but sometimes it can come out of nowhere.  (Well…nevermind. 😀 )

This morning I woke up a bit early, but felt rested. I’ve had no fever so far, though I feel a bit of a headache coming on; one of the nurses is going to give me some of the Tramadol pain killer for it. I was hesitant, since I thought it would conflict with the paracetamol which they’d use to bring down the fever if it jumped over 38. Apparently they can do both, though. (And I learned Sherlock Holmes would’ve been addicted to Tramadol.)

Aside from the headache, I’ve felt fine today otherwise. One of the haemotologists came by around mid-day with the good news that the chest x-ray they did as part of the normal work-up for possible infection came back clear, and there was nothing in my lungs connected to the fever.

Instead, she’s pretty sure it’s one of the symptoms of mucusitis, backed up by a few new small white spots appearing on the back of my mouth where there had only been one for a few days. The lucky part so far is that I’m still able to chew and swallow food without any discomfort. (Fingers crossed.)

Much like the second chemo treatment, this is dragging on for a while. Normal chemo have most side-effects between days 7 and 14. We’re on day 18 and the mucusitis is only now showing any real interest. Hopefully it’s just a splinter group, and will get disbanded by the strong antibiotic rebel forces.

Twiddle, twiddle.

P.S. When you’re in the hospital you’re supposed to have an appetite (I do), and try to eat as much as you can (I do this too).  But…the kitchen should try harder (they don’t).

This morning, while I was finishing my breakfast, a nurse appeared with a wheelchair to bring me down for my chest x-ray. Apparently they were going to do it last night, but I was asleep and they didn’t want to wake me. What’s funny about this whole thing is the fact that the nurse was going to be bringing me down herself. She’d sent a request for a porter to come, but after 15 minutes with no response, she didn’t want to wait any longer. She was even more fun when, in both directions to and from the x-ray, we passed at least 3 or 4 porters each way who were hanging out in the halls talking to each other. With no wheelchairs or patients around them. Tsk, tsk.

It’s been a busy day for my central line. Later in the morning my fever (over 38 C aka about 100 F) came back, so they gave me some paracetamol and at least two different antibiotics. Apparently my hemoglobin count went from 9.x yesterday to 7.x today, so they decided to do 2 blood transfusions; the first started in the early afternoon. By the time that one was done, though, my fever was back up to 38. More paracetamol, and then later a very cold bottle of water, both to try to bring the fever back down so they could do the second bag of blood. I was also encouraged to turn off the light which is above my bed, since it emits heat and could be “heating [my] head”. Really. And despite all this fever-ishness, I feel pretty okay.

I asked one of the haemotologists what could make a hemoglobin count drop like that. She said they’d gone through the various possibilities, including me having been bleeding anywhere internally or externally (including “the back passage”). Since none of those match, they believe it’s related to my fever and the infection involved in it.

There were two different sets of blood cultures done today, one in the morning and one late in the afternoon. Part of it is drawn from the line, while one remaining glass container gets blood from a fresh vein in my hand or arm; I thought I wasn’t going to have to do those anymore. I get the impression they do these blood cultures each time your blood pressure “spikes”.

One nurse mentioned we may not know until Monday or Tuesday. I didn’t understand why, actually. Well, until the second blood culture was taken. Ironically, the ones taken this afternoon won’t actually be looked at until Monday. The nurse said the important thing is getting them while my fever is up, “so they can get the things that you’re growing.” Insert here an image of those little green bugs they show in the commercials which bathroom cleaners are killing. Instead, this is a lab with medical geeks trying to identify my infection.

Just plain weird, sometimes, even for those who like science…

My smooth sailing hit a bit of a bump today, when my temperature finally rose above 38 C (100 F), which the nurses and doctors use as a sign of infection.  I woke up at 4:30am with an ache in my right hip (the one where all but one of the biopsies have taken place), got some Tramadol pain-killer, but then haven’t been able to go back to sleep since then.  I developed a headache in the afternoon, which actually matches what usually happens when I’ve not slept enough, even when I’m perfectly healthy.

So they’ve taken blood samples (to match the right antibiotic), a urine sample, given me an IV drip of paracetamol (temp now down to 36.5), and also gave me an initial antibiotic.  I already got one bag of platelets earlier today, but because of the fever they want to give me another tonight.  I’ll be taken down for a chest x-ray at some point as well; one of the haemotologist doctors told the nurses to do a “work-up” if my temperature “spikes“.  New words, reminding me of House and Grey’s Anatomy.  Heh.

For a couple of days the nurses have noticed one of my tonsils is a bit swollen, with a small white spot on the back of my mouth.  They’ve not developed further, and I can still swallow fine, but as my consultant doctor told me yesterday, the risk of mucusitis is still very much in play.

Help Us By Renting Our Island House

We’re really lucky and  were able to get and fix up an old house on an island off the coast of Maine.  Since we can’t be there this year, we’re trying to rent it out so we can make enough to pay the annual state property tax.  It’s available for $800/week, is really spacey with four bedrooms, a jacuzzi, and a wrap-around porch for wonderful evenings sitting outside during the sunset.  The fenced-in back patio has a grill, and there’s a children’s play structure in the back yard as well.

You can see it at the URL

http://www.islesboro.com/rentVac.htm

Were #52, the “Rambling Four-Bedroom Farm House”.  It’s available at a weekly rate (or longer) during the summer, the autumn, and early winter.

Please spread the word. 🙂