zen.org Communal Weblog

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?

Great part of today: Elana was able to come in, with our visiting friend Doug!  She had to suffer The Mask, but she was here. 🙂

Aside from that, something of a simple day with little to report or write—probably a good thing every once in a while.

The consultant doctor came by this afternoon with most of her team of haematologists, et al., to report things are progressing along fine so far. The blood draws show no leukemia cells, but also no neutrophil cells either, so both the bad guys and the good guys are out for the moment.

Last night I didn’t have any headaches, but I did tell the nurse that I felt a little pressure inside my head, which is enough for the doctors to decide to go ahead with the CT scan this morning. The other thing the consultant reported was that the scan came through clear and fine, so I don’t need to worry that the headaches I was having are anything more than just plain headaches. (Great relief.)

Neutropenic Paranoia

The CT scan itself took maybe 3 or 4 minutes. You lay down on a (padded, comfortable) slab and they roll you through what looks kind of like a spinning ring. For the chest CT I had before, the machine tells you to inhale and hold your breath. For a head CT, they used a strap across my forehead to hold my head still. (Didn’t hurt, and wasn’t holding it down, just holding it in place.) The person doing the CT told me to just try to look toward a single spot and keep my eyes from moving too much. Back in March I had one of these; that time, I chose to stare at a consistent spot where you can see the device spinning around. This time, I just closed my eyes. Much easier.

But it took more than an hour for the whole thing. Why? I had to wait, and wait, and wait. A porter (nice older men who push people in wheelchairs, beds, etc all over the hospital) brought me from St Annes Ward where my bed is to the CT & MRI department. There’s a public waiting area with a bunch of chairs, and down the hall there’s an open area where in-patients are deposited. A good 20-30 minutes went by; another patient was sitting about 8 feet from me, also in a wheelchair, looking impatient.

There were lots of women, all 60 and over I’m guessing, sitting over in the separate public waiting area. Each wore a blue hospital gown, holding on their lap what looked like a plastic shopping basket containing their upper-torso clothing and their purses. They were being processed in CT Scanning Room 1, a nondescript looking pair of grey double doors.

I have to wear a duck mask when I leave the ward, since I’m now neutropenic and open to completely random infection by everything. It mashes your nose really tightly, making me really only able to breathe out of my mouth inside the mask. This whole appearance, by the way, is still weird for people who see it—which appears to include hospital staff.

For that half-hour I watched people go by, back and forth. Many didn’t look around when walking, but there were some who you knew were staring straight ahead, straining to not turn their heads. I’ve seen women do this when they know a guy is leering at them, but this was an even split between men and women, young and old.

(Told later, the nurses on my ward were surprised I’d been made to wait. I don’t know if they mean cancer patients in general jump the queue, or if specifically neutropenic patients do.)

Finally the double doors opened, and out came one of the women in a blue gown. A CT scan operator came out and brought my neighbor into the scanning room. A moment later, a porter appeared down the hall with a man lying on his back on a gurney, saying he was going to be bringing him over to the x-ray department in just a minute. He parked the gurney about a foot from where I was sitting.

Then the guy lying on his back started to cough, a little. Right next to me. I was sure the mask was helping, but still. Please go away. Please go away. Still coughing. It seemed like forever. The porter reappeared after what was probably only a few minutes, and the guy carrying the threat of some random thing I could catch went away.

To the right of CT Scanning Room 1 was a big double-door storage closet of some kind, a single door to a public bathroom, the entryway to the CT Operator room, and, near the end of the hall, CT Scanning Room 2. I was puzzled why I’d been waiting so long if they have two of them.

The answer presented itself almost immediately—the double grey doors opened, and out walked a couple of construction workers, covered in concrete dust. I could see through the doors a dark area with clear plastic hanging around, tools on the floor, and a grey powdery dust all over everything. The same dust those guys were carrying around on them as they walked by.

When you’re neutropenic, they’re hesitant to let you go outside right now because there’s a bunch of building work going on over next to the parking garage. Because of all of the concrete, there’s a risk of airborne mildew which could give said patients a fungal infection. They’re nasty when you have no immune system, and can make you get pneumonia.

So these guys were potentially wearing big invisible piles of infection. And I had my mask. I’m sure it was fine, and none of them walked within even six feet of me, so it’s not like any invisible fungi were leaping across with shouts of glee. But, still. After the guy coughing, I get this.

The scanning room doors opened, out came The Other Patient, and the CT scan operator took me in, did the scan, and brought me back out. This is where the next half-hour went, waiting for a porter to appear.  And more guys coated in powder, coming and going, among the many people not looking you in the eye.

Again, I’m sure I’ll not lead to anything. But if you’re sitting there that long, with nothing to do, your imagination really will have a field day.

Next time I have a CT scan, which I’m sure I probably will at some point, I’m bringing a damn book. 🙂

Man, last night didn’t go well, sleep-wise. After a pretty smooth day, I was expecting a decent night. At 2am I was woken up for obs, like normal, but my tummy felt queasy. Nothing ever got any worse from that, thankfully, but at the same time I also had a headache. To top it off, both sides of my jaw were aching. Joint pain is a possible side-effect of the chemo I’m getting, so it sorta made sense. But the problem was all of this combined really made it difficult to sleep. I was basically awake until some time after 5 o’clock. The nurse on duty gave me some tramadol, a pain-killer, which helped reduce enough so I was able to sleep a bit.

I got two paracetamol (like Tylenol) at around 9 this morning to get rid of the headache, which came back after I was awake. They usually don’t use that specific drug because it will also bring down a high fever—which they avoid if at all possible, since it’d hide a fever, too. But it did the trick, and got rid of the headache. Which is a relief: when one of the doctors visited this morning, he said if I still have the headache tomorrow they’ll probably want to “scan [my] brain” (do a CT, the nurse told me later) just to make sure there’s nothing bleeding or happening in there. Just a little scary.

My tummy was still upset this morning, so I didn’t eat any breakfast. The best I could pull off was a couple of pieces of toast. The second piece needed a bit of raspberry jam on it—I couldn’t force myself to endure eating the plain toast. The word “bland” may as well have been sketched into it (more-tasteful wheat toast, no less). Also didn’t have a big appetite for lunch, though not because of anything not feeling right. During the mid-day chemo I watched Wimbledon, then spent time hacking on the computer some more.

Now it’s just after “tea” (dinner) time, which gets served around 4:30-5:00pm, and I managed to eat a decent portion of my meal so I won’t be starving later. Also have a scone, just in case.

Dot dot dot

Another side-effect was little red dots on the back of my hands, called “petechiae”, which are where caused by broken capillary blood vessels. The blood collects under the tissue and appears as tiny dots (usually the size of a pinpoint). The two doctors didn’t seem to react or seem troubled by them when I pointed them out, and a nurse told me they’re just there until platelets are up (later), so I’ll just put them under the “Side-Effects” banner.

Load ’em up

On the play-list for tonight, aside from knitting more of the hat, I’m getting one bag of platelets, which takes about 20 minutes, and also get a bag of blood which is either 2 or 3 hours. In an effort to have the blood transfusion help me both in terms of energy and my ability to sleep, around the middle of the day they gave me the LAST BAG of cyclophosphamide chemo med. The remainder of my week will be spent being monitoring for side-effects.

Medicine everywhere

Unfortunately Elana’s come down with a head cold, which means she won’t be able to visit for at least today and tomorrow. (Our friends arrive tomorrow to stay through to the weekend, which will be great!) Nurse J, one of our liaison nurses, said hopefully it’ll only take a day or so for the contagious part of her cold to go away so the doors will open for her again. 😉