Wednesday, December 14, 2005
Tuesday, December 13, 2005
Month Four was another turning point in David's health; chronically low blood counts weren't a problem before. David had his first blood transfusion in the hospital after the wedding, but in the past two weeks he's had multiple transfusions of blood and platelets. It's because the cancer has worked its way into his bones and has been affecting his ability to produce healthy blood.
We have a better idea of what the doctors were trying to spare David from when they backed off on the treatment. They did warn us that efforts toward extending his quantity of life would reduce his quality of life, and right now that quality is at an all-time low.
Chemotherapy and radiation, respectively, is essentially toxicity and rays to destroy cancer cells, but it does damage surrounding cells, too. David suffered from fatigue back in September when he was getting radiation twice a day, but nothing like what he's experiencing now.
I want to spare David his dignity so I won't go into great detail about the side effects, but it's comparable to going 30 rounds in a boxing ring and letting the opponent have a go at you with no resistance whatsoever on your part. Fatigue sets in when the body enters a restorative state, and all his body has the energy to do is repair itself, and nothing more.
I've been trying to maintain David's caloric and nutrient intake with cases of Boost, Ensure, and whatever food he can manage to eat. He's drinking a lot of milk, water, juice, and his kidneys seem to be working properly. (The chemotherapy/growth factor info sheets recommend lots of fluids.)
All David's body wants to do now is sleep. He has no energy to work on his railway project or read or sit in his computer chair. (Auntie Cris, I'm taking your advice about a bell, but I haven't been able to find one! I'll try again tomorrow.)
There's no radiation scheduled this week, only chemotherapy. Last Friday when David had his bloodwork done at the clinic, they said he was low on platelets, so we went to Mercy Hospital that morning. We thought he'd have radiation that day, too, but the technicians said the dose on Thursday was enough for more than a week. No wonder David feels this badly. But in his weakened state, parcelling out the radiation would probably add to his overall fatigue.
Month Four has been the hardest, I hope there's some reprieve in the coming days.
Monday, December 12, 2005
But I'm working on a new website, too, which will be revealed once I get all my Christmas stuff to the post office. That's been my priority, after David, Hugh, and the house. I'm still sticking to my guns about writing everything out by hand, which is grossly inefficient but I'm not taking any shortcuts on this one. The cards haven't been as elaborate as some, but they are all handmade.
David had a massive dose of radiation last Thursday, the largest dose to date. In fact, they had to take him off the table to give him a break, in part because there were multiple fields (his hip/back and leg/knee) and it was painful for him to lie on the table.
Thursday's radiation has turned David into a semi-zombie. I managed to get a photo of him here, on Friday night, while he was feeling up to working on his trains. But much of the time he slumps over in delirium after a few minutes and even mid-sentence. It's bordering on narcolepsy, and I try and be near him to make sure he doesn't endanger himself while he's physically unstable.
Both of his ankles are still swollen and we try to elevate them to give him some relief. David's hands shake, but he's doggedly determined to work on his trains when he's not too lethargic. We went to Lowe's (home hardware store) last week to buy wood for his train platform, so it's coming together. For both of us, working with our hands gives us something to concentrate on.
Friday, December 09, 2005
Thursday, December 08, 2005
It's been a long, tiring day. Both of us had a hard time getting through the prolonged time at the clinic, where the radiation machine needed maintenance and consequently delayed all the appointments. We were late getting over to the hematology and oncology clinic next door by nearly two hours!
We made good use of the wheelchairs at the clinics, too. There was a lot of back and forth between radiation, blood work, and the injection clinic today, and the cane was wholly inadequate. We requested a scrip for a wheelchair, but we didn't have time to pick one up today.
There was also the rigamarole with the increased painkiller dosage that the insurance company is not allowing the pharmacy to fulfill. Here's the beef: the insurance company puts a limit on QUANTITY of pills per month, regardless of STRENGTH -- what a load of bollocks! So, that means a patient can't modulate their dosages with multiples of smaller pills to match their pain levels because it'll exceed monthly limits. Pills don't come in all strengths, sometimes it's 20mg, sometimes 100mgs, etc. Sometimes there's a big gap between strengths and cutting the pills just crushes them. Most are too small to be precise, and they're potent. Overmedication can have major effects, which David has discovered firsthand.
David takes so many different forms of medication that he's reached the insurance limits on quantity partway through the month several times. I'm sure there are other patients who run into this problem. I don't know if it's just our insurance company or if they're all like that, but even so -- you can't just switch insurance companies midstream. Plus, who sets out to even find an insurance company with higher pill limits??? it's just not something you'd anticipate, unlike common things like optical or dental coverage.
We've gone through this before, and finally acquired a letter from the insurance company to allow the pharmacy to dispense more than their normal limit. However, I found out today that the letter doesn't have a code or an official means to override the pharmacy database! I mean, what good is THAT?!?
Today's blood test results:
- Hemoglobin up
- White blood cells up
- Platelets still low
December 1997 - Volendam, the Netherlands.
It sounds like the beginning of a joke:
"A German, a Canadian, a Dutchie, and an Englishwoman walk into a bar..."
Ansgar drove down from Germany to meet Lucy and me in Amsterdam, where we flew in from Manchester shortly before Christmas. Fedor met up with us later and took us sightseeing in Volendam, where somebody had the bright idea for us to get dressed up!! (That person wasn't me.)
Yet, this photo has been cracking me up for nearly 8 years. We had seizures of giggles choosing our outfits ("Do you want to be the fisherman or the accordion player?"), which made it difficult for the costumers to put the multitudinous layers over our clothing and for the photographer to get us to stay still. Note the shoes.
The photo seems like a lifetime ago, but that trip was so memorable.
I've added Flash notes to the photo in Flickr -- click to enlarge and view notes.
Dave's Logbook: Status Report
It occurred to me that my radio silence suggested I'd Nyquil-ed myself into a four-day stupor, but it came as a surprise -- even to myself -- that I only needed two doses of it to get me through the weekend. The sickness didn't last nearly as long as I thought it would. (Thank heavens for that.) And it snowed on Saturday -- a real snow, not that quasi-snow that arrived on Thanksgiving Day while I was in New York and promptly melted -- so being stuck inside to recover from the cold was no big hardship. Driving in snow is not my idea of a good time.
I tried my best not to infect David with whatever I had, and thankfully that was the case. It was a very brief bout of symptoms, and aside from a sore throat, none were passed onto him. David had a second blood transfusion for the week on Friday, and we had our fingers crossed that Monday's blood tests showed an increase in his blood counts.
In the meantime, over the weekend all David could do was try and medicate his pain away. His left ankle swelled up like a balloon, and he phoned the on-call doctor to see if this was something to worry about. The doctor said under the circumstances this was not abnormal, and for some reason it's typically the left ankle. Hobbling about with a cane, a sore hip, knee, and a swollen ankle in our two-storey house isn't easy, so David was mostly confined to the second floor. Then his right ankle followed suit -- swelling up about the same amount as the left. We found out later from the oncologist that the swelling can be attributed to the high dosage of growth factors recently.
On Monday we went to the clinic for the blood tests, this time:
- Hemoglobin up
- White blood cells up
- Platelets low
Since Monday, David's pain has become worse. The doctors have upped his medications again, but for the umpteenth time there's a red tape delay because the pharmacy says the insurance company won't honour the prescription, they're faxing the doctor, blah blah blah... I swear, I've said this time and again but the insurance companies have patients by the proverbial testicles here. 'It's enough to make an elephant crazy,' my Israeli friend used to say. (I'd like to hear how that sounds in Hebrew, it's probably more descriptive pre-translation.)
So, with David's increasing pain (he says it's the worst ever since the diagnosis, 11 on the typical 1-10 pain scale), my tasks have changed. I've been trying to modifying the house to accommodate David's current physical state. We bought a few things to try and make things easier for him:
- padded seat for the commode ("for my bony ass")
- in-shower seat (it's still difficult for him to get in and out of the tub, though)
- bed tray, etc.
We're also spending more of David's waking time together. He sleeps in the spare bedroom because the single bed is softer and lower, making it easier for him to get in and out. It's too small for the both of us. Pain wakes him up, and it paralyses him for the first hour or so until his medication kicks in. Unfortunately waking up happens several times a day and is unavoidable. Only after the painkillers take hold does he feel more like a human being. Until then, I try and come up with some way to distract him, a story or a conversation, but usually he just lays there quietly in a dark haze of pain until the drugs make their way into his system.
For David, waking up is awful and dreaded. He calls out and I rush over from the bedroom to give him his pills and a drink to wash them down. He can't move his legs. Yesterday I had to wheel him to the bathroom with an office chair. This is how it goes. Not always, but when it's bad... it's off the scale.
That's why it was such a relief for David to hear the magical words "We'll radiate you on Thursday".
I did, in fact, join a photography club earlier this evening:
Northeast Photography Club
There was a mixup on the website, so I actually showed up an hour early along with two others, so we three had a good natter while waiting for the rest to arrive. The club formed in 1989, so it's a well-established organisation with a board, critiques, competitions, themes, published catalogues, and regular exhibitions in venues such as Penn State and Everhart Museum. In other words, nothing like my summer o' love with Vandigicam, but culturally speaking, in line with what I would expect for an East Coast formation of photography enthusiasts.
My goals are to discover the best of both worlds, meet people, and be more in touch with the community. This is the best place to start, I think. Also, there should be at least one Canadian in every mix! At the very least to spread the little-known fact that not all of Canada is held hostage in winter by subzero (Celsius) temperatures!
Now that my shutterbugging is shifting to film, it's probably the optimal time to join such a group. There was a slideshow presentation and I'm ashamed to say I don't possess a single slide. I haven't shot slide film since high school. Photography books were passed around, and when I filled out the membership form I had a conspicuous blank space at 'workshops taken' and 'published works'. One of the members was recently published in Photography magazine for an architecture shot. Yes, I have much to learn from this group. I'll be reading my 'photography fundamentals' books over the holidays and have a lot of cramming to do before the next meeting (in January). There is a juried Club show in March, and I'd like to submit at least one photograph that'll pass muster.
Wednesday, December 07, 2005
... but let's start with the good stuff, shall we?
Yesterday the five Ms (Maribeth, Megan, Madeleine, Michael, and Melissa) received Christmas package 1 of 2. Which was a complete surprise since I only mailed it last FRIDAY. For a box, four days between Pennsylvania and BC is remarkable, especially over a weekend!
When I took the package to the post office, it was with more than a twinge of sadness. This will be my very first Christmas without the Ms since the first one (Melissa) came into this world in 1999. I'm not a huge fan of Christmas, but watching small children opening presents is something I've come to cherish very much since they were old enough for parent-sanctioned paper shredding.
Yesterday I found two voicemail messages from Melissa, at home and on my mobile phone, asking if they could open their box. It did not escape Melissa, very astute child of six that she is, that the box was devoid of any markings such as "DO NOT OPEN UNTIL CHRISTMAS!" Although, when I phoned her last Thursday, she asked me if I received their Christmas calendar.
Me: "Oh, you mean the envelope marked 'DO NOT OPEN UNTIL CHRISTMAS!'?"
Me: "OK, let's just pretend I didn't hear that."
I put the kids in suspense for a while, humming and hawing over whether they could vulture-pounce the package. I asked their mother about the other Christmas packages -- there must be something left to squeal over on Christmas Day, right? -- and she informed me that the parcels from Maine must remain unopened until The Big Day.
"Well," I said, "there is another package due to arrive because the other two batches (special deliveries from some friends abroad) have not been shipped to me yet. So..."
"... I think it's alright for them to go ahead and open it. Release the hounds!"
I brought my PowerBook over to David and we had some belly laughs over the video clips of the kids with their loot. They have no clue what's coming next, but some of the things in the package should keep them occupied until then. I'm not saying any more! Melissa can read now!
In anticipation of a seasonal post office backlog, I've been keeping busy trying to get my Christmas parcels out the door asap. I decided that THIS IS THE YEAR when I'll be on top of things, and perhaps rather foolishly decided to make my own greeting cards. From scratch. No two alike. From mostly recycled materials I've found around the house.
I pulled an all-nighter the previous evening toiling in Santa's Workshop, snipping and folding and gluing and crafting and wrapping and writing and measuring and--
--oh yes, anyway, things have been rather handiwork-oriented lately. Low-tech rather than high-tech. I don't have a large workspace, so a modicum of cleanup is required every 90 seconds or so. Very slow process, this cardmaking business. It's winter and the windows are closed, the solvents must be getting to me.
Christmas cards are pretty cheap in bulk and I could get more written up and posted, but sometimes I just do things the hard way because I'm a sucker for handmade things. I figure, now that I'm not working (still waiting for my work permit) and looking after David at home, I should put my resourcefulness to the test and see what I can do about reusing things we already have in the way of paper and the sheer tonnage of packing materials accumulated from all the online purchases we do now.
If you'd like to receive a handmade Christmas/New Year card from me, just drop me an e-mail to gailontheweb [at] gmail.com with your postal address and keep an eye out for my distinctive handwriting that screams 'anal-retentiveness'!
Saturday, December 03, 2005
Me being mostly unconscious is a real role reversal in our household, since David is usually the one who gets KO'ed with pills. He said last night he was an insomniac, but this morning he brought me breakfast in bed. Lucky me!
Treatment is always discontinued on the weekends, so it does feel like a weekend for us. We don't have to go to any appointments. David's been catching up on his writing, and if I hold off on the Nyquil a little longer, I should be able to scare up some video clips, too.
David finally finished the last installment of his story about how he acquired our 1954 Piper Tri-Pacer. The links, forthwith:
The Story of 02P
Friday, December 02, 2005
1) Platelets up
2) White blood counts up
3) Hemoglobin barely moved
After the shot of the growth factor, Neupogen, an order was written up for another two units of blood at Mercy Hospital right away. We just had enough time to grab lunch (yes, Mercy Hospital's food is that bad), then run home and grab a book and David's hospital bracelet from Wednesday so they don't have to type and cross him for platelets again. From what he said, they do have to do that for hemoglobin every time, however.
The whole process will take all afternoon, so I'm home to rest and keep my germs to myself. And before I get too caught up reading about the history of blood transfusions on Wikipedia.
So far it started with a sore throat, now cold symptoms like sneezing and coughing. I hope it doesn't progress to the flu.
On Monday the bloodwork showed David's counts to be far below safe levels for treatment. Tuesday a meeting was called to reassess his overall situation and to develop new strategy, because the cancer is by all accounts spreading but his current condition makes radiation unsafe. David's pain levels are increasing, and the x-ray of his leg last week confirmed it to be a new area of concern. Chemo was scheduled right after the meeting. Yesterday David spent most of the day in the hospital getting a transfusion of two units of blood, a unit of platelets, followed by growth factor injections. Today it was back to the clinic for two more injections. In the morning we are due to return to the clinic for more bloodwork to see if it's safe for radiation to resume on Monday. I hope so, because our available options are narrowing (no, disappearing) with the dropping blood counts.
Low blood counts spell trouble:
- Chemotherapy is unsafe
- Radiation is unsafe
- Disqualification from clinical trials
This is a critical time for us. It's hard for me to post these updates... writing ones like this make me tear up at the keyboard, but I try and write while he's resting and be with him when he's awake. I feel it's the best way to spend as much quality time with David as I can while keeping people updated. Thanks for tuning in.
Thursday, December 01, 2005
This is Rustyrabbit's cat, Buddy, putting on his "cheese" face. The kitty's giving Hugh a run for his money in the photogenic department. See here and here to see what I mean. He's a real... er, poser.