zen.org Communal Weblog

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. 😉

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. 🙂

A slightly different post here….

The amazingly wonderful Nurse B had his last day of work today.  In a few weeks, he and his partner are traveling SE Asia on their way to settle in Australia.

While B and I remember the fun and excitement of moving here (I think we were about Nurse B’s age as well), it’s slightly sad for us.  Nurse B was the first nurse on St Anne’s Ward who I met, as they wheeled B into the room.  He was lovely, kind, and spoke very gently to both of us, recognizing the shock we were going through.

After the other two times of finding out the chemo didn’t work, Nurse B was there to talk to B, and just sit and listen.  He’s always there with a smile and a laugh, and has always been informative and overall, believe it or not, fun.

Nurse B, you have been amazing for us through all this, and we wish you and your lovely gf a happy, healthy, and always exciting new life.  Now go explore!

The consultant doctor came by today, and because of the strength of my third round of chemo it’ll be at least 2 weeks before we see any movement in the numbers.  The focus is on staying healthy and not getting infected by anything, so I’m able to stay reasonably comfortable.  She’s going on vacation on Friday, and another doctor will cover for her while she’s away.

Sense of accomplishment

I got lots of hacking done today, and also began the practice knitting (swatching) of the Pink Lace Scarf.  I’m using the pink yarn to make sure I’m comfortable with the pattern, and then I’ll switch to doing both the pink yarn and pink lace together at the same time, making it become the pretty froo-froo it’s supposed to be.

Elana was able to visit for a nice length of time today, and there was even plenty of Wimbledon tennis.  One of my neighbors is great and uses headphones while watching TV.  The other one, not so much.  Loud TV.  Gah.

Things are progressing according to plan.  Hair’s starting to fall out, so I trimmed my beard and head down so less accumulates on my bed.  Rash is reducing itself with the help of the cream, and according to one of the doctors my lower lip now being dry and chapped is a good sign of improvement.  I received a bag of platelets this afternoon, and tomorrow will be getting blood transfusions of two bags of blood.

Improvement Cream

One of the haemotologists said they want me to use something else on my lips, separate from just the petroleum jelly for moistening them.  (Actually, a nurse and I both misunderstood and thought he was replacing the jelly with the cream, so I’m actually still trying to get the jelly back.)  He gave me a prescription for Acic 5% Cream, used as an anti-viral medication for cold sores.  I’m supposed to be applying it five times a day; maybe tomorrow I’ll have managed to come up with the routine which lets me remember properly. 😉

My daily routine now includes: 1) Acic cream for my lip five times a day; 2) Eumovate cream for the rash on my legs twice a day; 3) regular mouthwash with sodium chloride (saline) at least four times a day; 4) after the mouthwash a regular application of Mycostatin anti-fungal medicine for my mouth at least four times a day; and, 5) drinking a goal of 2 liters of water a day (and keeping track of my liquid intake, including soup).

This is separate from things like weekly events including busy Tuesdays with swabs, a full cleaning of where beds 4/5/6 are which involves moving all of our stuff out of the way and, usually, knitting in the hallway, and re-dressing my Hickman line (which also happens on Fridays).

Somewhere, a party’s goin’ on…

Jealous, much?

It was interesting, getting to move beds the other day.  I found myself actually jealous of the other patient who was lucky enough to get discharged to go home.  Today, I overheard another patient’s doctor talking about good news in his platelet count.  I’m genuinely happy about their good fortune, but to be honest it just makes me impatient for my turn to have things go the same way.  And all I can do is wait and hope.

To answer one question before it’s asked by others: no, we don’t know when I’ll be able to leave.  It’s all dependent upon the relationship between my body and the chemo, and how they deal with each other.  We’ll be repeating our exercise of watching the cell count numbers, looking for increases.  But nobody can accelerate it.

Doesn’t mean we don’t want to… 😉

My lower lip started on Thursday to be very sensitive, and then small sores/ulcers started to form on it. The doctors said this could be the start of mucositis, a common side-effect of high-dose chemotherapy. It can occur anywhere along your entire G.I. tract (from your mouth to your anus), and make it so you’re not able to eat comfortably.  So far I’ve been lucky and only had it manifest itself on my lip. There’s nothing to make it go away—you just have to wait about 7 days for it to run its course, and combat its effects with things like pain-killers and lip balm.  This started between Wednesday and Thursday, so sometime late next week hopefully I’ll be able to report it’s cleared up.

The Eumovate skin cream seems to be doing its job with the itchy rashes, even though as I type this I feel a little bit on the bottom of my legs; I apply it after I shower in the morning and again before I go to sleep.  The rash itself has already cut down by more than half its original state, which is encouraging.  At the current rate, it’ll hopefully be gone—or at least improved dramatically—by early next week.

Visitation Rights

Our friend Doug spent time visiting this afternoon, and yesterday a mixture of he, Terri, and Elana were able to visit at different times. It was great to see them, and Doug and I got to enjoy the geek-fest language exchange we usually have at least once a year. He showed me some awesome pictures he’d taken with his camera of Patrick, Eoin, and their older 13 year-old daughter playing on the trampoline in the back yard. He got two shots of Patrick suspended in mid-air with great expressions on his face. They were a real treat.

Maybe Moving?

There are three beds in this center part of the ward, across from the nurses station. Bed 4, where I spent so many weeks, is on one side on its own, offering the most space and a window view. Across from it is bed 5, also with a window view and decent space, if not as much. Then there’s the famed Bed 6, used often for close observation of patients; this is where I’ve been since I was admitted more than a week ago. It’s the least desirable, because not only is it the smallest in terms of space, and no view of the outside, but it’s also closest to the hallway. This means any and all passing noise is most audible in Bed 6. Sleeping with earplugs helps, a lot, but they don’t block everything. If the curtains are drawn closed around Bed 6, heat builds up enough to make it uncomfortable, so I tend to keep them open. The price of doing this is accepting the glance (or avoided eye contact) of everybody walking by.

My neighbor in Bed 5 was told today, before he got to leave to stay at home tonight, that if his numbers come back still good from a blood test tomorrow, he’ll be getting discharged. I’ve already put in my bid with the nurses to get to move to Bed 5 if he’s that lucky. I’ve been encouraged to repeat the request shortly after he leaves.

Bummer I can’t just get Bed 4 back. 🙂

Untapped Resources

There’s a definite market for technical support in long-term care hospital wards like this one. This afternoon, I confirmed for one patient that the wifi was in fact dead again, meaning we’re collectively screwed and it won’t be properly online until Monday.  (I’m only able to send this because a great knitting friend of ours has loaned me a Vodafone 3G mobile Wifi, or MiFi, device.)    This evening, I loaned another patient my iPhone charger which I used to charge the iPhone 3G for listening to podcasts. One of the nurses is interested in help using Excel spreadsheets more effectively.  And these are just the ones which happened really recently.

Curious, no?