Carol's second infusion of the Remicade went well; they did a very slow infusion, that is, over 5 hours with IV, to try and minimize any headaches that might occur. I must say it got off to an inauspicious start as the night before Carol woke up to go to the washroom and got one of the severe headaches. As I ran downstairs to get cold compresses from the freezer all I could think was "Oh man, it is not going to be a good day tomorrow."
How nice to be wrong.
Naturally she was very tired, and mostly I tried to keep the kids out of the house. But it seems to be working on the colitis, which is awesome, and the headaches have mostly been low level ones, no head-splitting numbers. She's slowly getting more active, eating real food again, and is even up five pounds from her low of 106!
One funny aside (well, it could turn out to be unfunny but for now it's amusing) is that because the okay hadn't come through from my benefits plan to cover these infusions, we had to basically go to the hospital pharmacy and buy the drug like you would penicillin or an antibiotic, then wait for reimbursement. The little pharma receipt read like this:
Remicade (infliximab): $3174.50
Dispensing: $11:99
What, we drop three grand and you can''t throw in the dispensing fee!?
As I say, it's kind of amusing now, but if Blue Cross gets difficult it'll be less so. There are other options (and thanks to our friend Denise for some good advice on this) so it's not like we'd be totally on the hook for it, but it's just more negotiations and all that, and that's never fun.
As another aside (are you allowed to have two in one entry?), Carol finally read this blog over the weekend, and told me she found it "depressing." It's true it's no laugh riot, and from her point of view maybe it's depressing to look back over. But I will say of all the emotions I've felt during this, feeling depressed isn't one. Distressed, yes. Stressed, definitely. Pressed, well, just about always. I guess I haven't had time to feel depressed. And hopefully now there will be no need.
Well it turns out they don't administer Remicade on Fridays (not clear if it's a religious thing, like only eating fish) so Carol's appointment for the second infusion of Remicade has been rescheduled a day earlier to tomorrow. This is a bit stressful for a few reasons:
1) The second infusion is the "fork in the road" for this drug: either it takes and you're back in pretty good shape from then on in, or; your body says "No, once was enough!" and rejects it. So our fingers are crossed for her body taking the right turn here.
2) The headaches have softened, although they continue to some degree. Not clear if a new infusion, even if successful from the fork of the road perspective, will bring back the severe headaches again. If so, well, that's a whole other issue.
3) Because this is an extraordinary expensive drug (funny how that happens when there's no generic version available) it's not entirely clear to what degree my prescription plan is going to cover it. Typically, my work Blue Cross plan covers 90% of prescriptions, but this one requires special authorization. They are still requesting more info from the hospital, which has a (terrific) rep whose sole job is to broker this stuff, and if it isn't approved by the time the infusion starts, then we put $4000 on our credit card and hope for the best.
Gulp.
Apparently it's not an unusual procedure, and will likely be approved but still. That's a lot of dough to be thinking about as you sit for 4 hours with a needle in your arm.
It's been a slow week for Carol, and the weekend wasn't much quicker. She's been making progress on the bowel part, although the headaches are still there. On Saturday we went out to her sister's place for a great BBQ dinner, which went well and she seemed in good form. (As an aside, the initial reason for going out there was to return their carpet steamer they'd lent us. It was in the back of the car, and as we chatted and ate salmon and enjoyed ourselves, there it stayed forgotten, until we pulled into our garage at home and realized we still had it. D'oh.)
But that evening after a bowel movement, the headache came back with a vengeance. She piled in some Tylenol, and I put ice-packs on her forehead and neck while she curled up in bed to try and ride it out. Sigh. She gets her second infusion of Remicade this week, so I guess that will mean a few things will have to be decided: is her body going to continue to respond to the drug? and; is the cure worse than the disease?
Hooray! Carol was discharged last night, and after picking up the kids from all over we jumped in the car and went to the hospital to get our Mom back.
She is still very frail, and incredibly thin (ie down to 109 lbs on our scale last night). After I got the kids to bed I saw her walking to the kitchen and it struck that she moves like a spectre, slowly and fluidly, weaving her way between objects. Hopefully being home in her own bed, better access to good food and fresh air (not to mention mandatory stair climbing in our house), will mean a steady path back to full recovery and strength.
And now that I know the readership of this blog is more than just me and a couple of friends from Trapeze Media, let me offer a more heartfelt thanks to everyone for their concern, help and support over the last month. The beauty of friends and family is that you don't alway have to DO something to be helpful. Just the knowledge that you're there and thinking of us makes all the difference.
Onward and (hopefully) upward!
Not a good night for Carol. Another crushing headache after a bowel movement last night, and then a pounding skull throughout the night. The neurologist was there, as was the doctor, although they seemed to have different views as to what was bringing it on. Neurologist thinks it's the Remicade, doctor thinks it was the lumbar puncture (aka spinal tap) done on the weekend. Given that the spinal tap was after the first headache -- indeed, because of the first headache -- I'm going with the neurologist on this one.
Anyway, she was supposed to be discharged today, but now it seems unclear whether that's going to happen. Sigh.
Ah Mondays. Such a difficult day, and you know, it's like every freaking week you're dealing with another one. They would be easier if they didn't come right after the weekend when you're all relaxed.
Well, somewhat. I was given a respite on Saturday and Sunday due to the generosity of Carols' sister, who took the kids for a sleepover. So how did I use the time? Well, some errands on Saturday afternoon (a long walk around Canadian Tire, which is always fun), then some cleaning up at home and then out for the evening for some 'Trashing at Cherry Beach with my friend Mark. We didn't play very well, but I just didn't care. It was nice to be out.
Sunday morning I slept a bit late (ie 8:30), then Carol called because she'd had a horrible night of headaches and wanted company. So I spent some time there, then came home for a shower before going back to get her again as she had a day-pass. So nice to sit in the house together just on our own. Doesn't happen much. That said, she is so weak that she mostly just sat and did a bit of Kid Brother work on the computer. At one point she needed to go up to the 3rd floor to input some VISA slips, but her legs are so atrophied that I literally had to piggy-back her up the stairs. Given that at her current weight she's only slightly heavier than Campbell and Leighton combined, it wasn't that hard. She doesn't squirm as much as they do either.
Then, if you can believe it (and I almost can't), I started steam-cleaning our filthy carpets.
Carol actually wanted to get back to the hospital before the kids got back, as she wasn't feeling up to the chaos. So I took her back around 5:30, then went home and made myself a little dinner to eat on the front porch. Nice and quiet again.
Carol needn't have worried too much about the chaos, as the kids all came home exhausted and subdued at around a quarter to seven. In fact, Adele was fast asleep in the car, and I just put her to bed when it was clear she wasn't interested in waking up. I was just thinking at a certain point that I should broach the subject of homework when I turned around and there was Leighton reading one of his books for school. God love him, I hope his love of learning never stops. I so admire it; it took me years to get there.
Anyway, once they were all in bed and fast asleep, I steam cleaned the last of the carpets downstairs, read the paper with a beer and listened to music... Then went to bed too late again.
Is it Monday already!?
I spoke with Carol on Friday around 4pm after her first dose of the Remicade, and she'd had no adverse reactions, which obviously is great news. I left work shortly afterwards, with the intention of picking up the kids and taking them in for a short visit before dinner. Just before 5pm, Carol's sister Susan called to say that she had tried calling Carol but that the nurse had answered and said Carol "wasn't well". Oy. So I jumped on my bike and headed over while Carol's mom Claire got some dinner going for the kids.
I knew something was up when I walked past the nurse's station as they normally just vaguely acknowledge me but this time it was a "Okay, the husband is here" kind of reaction. Apparently as Carol had a bowel moment she was suddenly stricken with a severe headache that was so intense she couldn't stand up. As I arrived they were prepping her to go down for a CT scan to make sure there were no broken blood vessels or anything. Very intense.
Anyway, to cut to the chase, the CT scan found nothing, and neither have the follow up exams. So that's good news. Apparently it's not uncommon to get headaches from Remicade at first, but the severity and suddenness of it continues to be a mystery and a concern to all. Since then, although the headaches have been less severe, they continue. This morning (Sunday) Carol called to ask if I'd come down early as she was in a lot of discomfort. Each headache seems to last about 2 hours, then fade away over time.
That said, they're going to let her come home for a couple of hours this afternoon, so she can rest. Sister Rochelle has generously take the kids so it should be nice and quiet. Then tonight she moves over to the oral steroids again as part of the process of weaning her off those as she goes on the Remicade. Last time this was a disaster, so this will be the test of the new treatment.
Fingers crossed!
Another tough week for Carol as she continues to struggle with her ulcerative colitis. The doctor was initially hoping to send her home last Thursday as she was making progress, but in the end it was decided she hadn't made enough progress, so no go. However, she did get a day pass for a few hours on Saturday and Sunday afternoons, which we were looking forward to.
I must say, it was shocking to see how frail and tired she looks. She's lost so much weight, which oddly I didn't notice as much in the hospital, but was really obvious once she was in the familiar surroundings of home. The activity of the house with kids and Krazy Kola was really too much I think. She spent a lot of the time sleeping on the couch. On Sunday our wonderful friends Catherine and Pierre came over with their kids and made us a great dinner. I think it was great for Carol to get a little "normal" into her life, but again, I think the level of noise and activity was just too much. She seemed almost relieved to get back into the hospital.
The good news is that we know now about the complete and utter incompetence of the kitchen at Toronto Western -- really, it is absolutely shocking what a poor system they have, they seem incapable of following even the most basic directions from nursing or doctors. For example, when the nutritionist spec'd "no red meat" it either resulted in a) a stew with red meat or b) a vegetarian meal. So, Carol returned on Sunday evening well stocked with no-lactose yogurt, chicken broth and white broiled fish, which she tolerates well.
The really bad news is that they tried moving
her off the steroid drip and onto orals yesterday, and last night was
an absolute disaster: a lot bleeding and eventually throwing
up. So now we seem to be back to square one and a clear fluids diet.
Poor Carol is so distraught, and I must say, this is discouraging. I've asked
her to pin down her doctor to a visit time so I can come in and fully
understand the options, as my impression (and I get that it might not
be accurate) is that there's just not a lot of proactive care going on unless it's requested.
Anyway, we continue to take it day by day. The kids are being awesome,
and mercifully work has been very civilized so I've been able to spend
lots of time with them and keep the "fun" quotient up at home. I even
went on a École Pierre Elliott Trudeau field trip with Leighton this
morning to the Bata Shoe Museum. The best part of these trips, aside
from just getting out and sharing some of Leighton's school day, is
that you get to watch the behaviour of many other 6 year olds. And it
makes you all the more appreciative of how well-behaved and thoughtful
one's own is. :-)
The worst is that I planned to take the kids by this evening after dinner, and Carol said she just didn't want them to see her "like this." Heartbreaking.
