Yet another Update on F
A week ago last Friday F had his first infusion of the new study drug, mepolizumab... The infusion went smoothly and he did not feel sick or weak or nauseous. Due to paperwork and how long it takes to mix the drug up--it has to be prepared RIGHT before it's given--we were there for about 3 hours, oy. We went in at 2, had an appointment with the best doc in the world at 4, which we could not make. So the doc came to us! We talked for a while, and most of it was happy stuff, but then he told us something that scared the hell out of me: If the mepolizumab did not drop F's levels significantly in the first WEEK, it most likely would not work. He then said they would continue with the treatments regardless, hoping for the best. But as he said this, it was clear there would be no best.
So we went home and settled in to wait until the following Thursday, when the next blood work would be done, and we'd find out if it worked or not.
I did my best not to dwell on it. I'm good at "selective compartmentalization." But this was just too big, so much at stake. I mean, we've spent the last 2 1/2 years fighting like hell, and I think the family has suffered. We haven't been able to attend things like birthday parties, etc. We barely made it to Thanksgiving last year. But as much as this family--we have 6 sons now (2 recently acquired, long story) and a couple have families, so we're becoming "extended"--as much as this illness has hurt, it's nothing compared to what the loss of F would do. I guess that goes without speaking, but even in absentia he's the glue, you know?
Thursday was a crazy day, and we didn't get to the lab for the blood draw until almost 4, so that meant no results on Thursday. We went home and sort of stared at the walls, watched NCIS, tried not to think. At some point during that long week I texted my bff, and said simply, tell me it will be alright. Her answer came quickly: It was be alright. OK, simple, but knowing she was out there, holding her breath with me, and praying like crazy and sending out the best thoughts--knowing all of you who are in this with me are out there--it helped. It continues to help.
Friday morning at 8:30 the phone rang, and it was Andrea, the woman who coordinates the study. She said she wanted to set up the time for F's next infusion. We did that (July 7th). I was about to ask her if she had seen the blood test, I was damn near holding my breath, my whole body was stiff, when she said, oh so casually, "The test results are in, and we're seeing the kind of improvement that was hoped for." I said, "REALLY? What is his eosinophil count?" And she told me it had almost halved. Almost a 50% drop, and I mean almost. In a week! I stammered, I couldn't think of what to say. So I said thank you a bunch of times, and she laughed a bit. Then I hung up and turned over (we were still in bed) and asked F if he was awake, and he nodded, and I said, it's working. The drug is working. And I told him how much his count had dropped, and he smiled sleepily and said, oh good, and then went back to sleep! I let him sleep in as long as I could bear it--to about 11--and then woke him up and asked him if he remembered what I had said that morning. He nodded and said, "Looks like I might live."
We were so happy, and at the same time, so tired--we didn't sleep much last week. I posted on FB that I'd do a happy dance if I could, but was too tired. (I got up and did one anyway. Which makes me want to ask--am I the only one who actually does a happy dance? Are happy dances mostly hypothetical?)
One of the first things we did, later, after F had had his coffee, was have an argument. At the time I felt so bad--I thought, this is ruining our great day. Then we sort of made up, and were still a bit mad at each other, when I suddenly realized something: We have not argued in almost 2 and a half years. Why? When you are constantly in crisis mode, waiting for the next blood test, the next stroke, battling nasty side effects from medication (Interferon A worked but OY the side effects!)--when all this is going on, you cannot fight. Well, we couldn't. If I got angry I mostly held it in. We had a couple of minor dustups, but nothing BIG. I turned to F and said, ok, this has sucked, but you know why we're fighting? It's because we finally can! And he looked at me, puzzled, and I said what I said above, and then he relaxed and smiled a little. He said, yeah, I guess we can. (Though we certainly don't want to make it a habit!) You don't quarrel with a dying man. But one who is going to live--all bets are off!
So that's where we are now. Taking it easy. Enjoying the moment. This whole thing has taught us that--all we have is THIS moment. Everything else is gravy.
And oh! During the week he suddenly perked up. I mean, overnight. One day he could hardly walk and the next he was doing laps up and down the hallway, saying "if I don't exercise I'll never get stronger." He did about 15 minutes worth of walking. The week before he could hardly walk from the bedroom to the kitchen, and needed spotting. The same day he had PT, and Rebecca, the best PT in the world, put him through his paces big time. Afterward he rested for a bit, then, when I was going out to run a couple of errands, he said he wanted to come along, and could we go by Bed Bath and Beyond and get a toaster oven? I was floored. But we went, and he walked all around the store, and didn't need spotting. We even went to the VI (Village Inn) and had a very late lunch. The people there said, wow, haven't seen you two in a very long time...
So he's already better. We also finally got the right mask for his apnea treatment, and that is going well. Instead of almost falling over (and sometimes he did fall) in the morning he's damn near perky. Which is almost scary. Mostly it's wonderful. He's back at the computer, working on a new story. He had started a new collection about 3 years ago, then all hell broke loose. So he's back at that--cursing Word 2011 and yelling for me to come get rid of the damn complicated ruler because it's so damned overly complicated--I sigh and fix whatever has gone wrong. But I love it. He's starting to be his old wonderfully funny and cranky self. As I write this he's watching Formula One. He missed 2 seasons, even though he loves Formula One.
He's back. I'm trying to relax and let him do things for himself. It's hard to stop wanting to control everything, even though doing so has been exhausting, you know? This morning he made me coffee, and we sat in the kitchen and just hung out and talked--until F1 came on. Then he shooed me away so he could watch uninterrupted. Shades of the past. And the future, now. A future. Maybe, at some point, I'll stop asking myself if I'll be alone this time next year. I think it could happen. I hope, finally.
So I came into the bedroom and wrote this post, and I can hear, from the kitchen, the sounds of vrooming cars.
Thank you, my friends.
So we went home and settled in to wait until the following Thursday, when the next blood work would be done, and we'd find out if it worked or not.
I did my best not to dwell on it. I'm good at "selective compartmentalization." But this was just too big, so much at stake. I mean, we've spent the last 2 1/2 years fighting like hell, and I think the family has suffered. We haven't been able to attend things like birthday parties, etc. We barely made it to Thanksgiving last year. But as much as this family--we have 6 sons now (2 recently acquired, long story) and a couple have families, so we're becoming "extended"--as much as this illness has hurt, it's nothing compared to what the loss of F would do. I guess that goes without speaking, but even in absentia he's the glue, you know?
Thursday was a crazy day, and we didn't get to the lab for the blood draw until almost 4, so that meant no results on Thursday. We went home and sort of stared at the walls, watched NCIS, tried not to think. At some point during that long week I texted my bff, and said simply, tell me it will be alright. Her answer came quickly: It was be alright. OK, simple, but knowing she was out there, holding her breath with me, and praying like crazy and sending out the best thoughts--knowing all of you who are in this with me are out there--it helped. It continues to help.
Friday morning at 8:30 the phone rang, and it was Andrea, the woman who coordinates the study. She said she wanted to set up the time for F's next infusion. We did that (July 7th). I was about to ask her if she had seen the blood test, I was damn near holding my breath, my whole body was stiff, when she said, oh so casually, "The test results are in, and we're seeing the kind of improvement that was hoped for." I said, "REALLY? What is his eosinophil count?" And she told me it had almost halved. Almost a 50% drop, and I mean almost. In a week! I stammered, I couldn't think of what to say. So I said thank you a bunch of times, and she laughed a bit. Then I hung up and turned over (we were still in bed) and asked F if he was awake, and he nodded, and I said, it's working. The drug is working. And I told him how much his count had dropped, and he smiled sleepily and said, oh good, and then went back to sleep! I let him sleep in as long as I could bear it--to about 11--and then woke him up and asked him if he remembered what I had said that morning. He nodded and said, "Looks like I might live."
We were so happy, and at the same time, so tired--we didn't sleep much last week. I posted on FB that I'd do a happy dance if I could, but was too tired. (I got up and did one anyway. Which makes me want to ask--am I the only one who actually does a happy dance? Are happy dances mostly hypothetical?)
One of the first things we did, later, after F had had his coffee, was have an argument. At the time I felt so bad--I thought, this is ruining our great day. Then we sort of made up, and were still a bit mad at each other, when I suddenly realized something: We have not argued in almost 2 and a half years. Why? When you are constantly in crisis mode, waiting for the next blood test, the next stroke, battling nasty side effects from medication (Interferon A worked but OY the side effects!)--when all this is going on, you cannot fight. Well, we couldn't. If I got angry I mostly held it in. We had a couple of minor dustups, but nothing BIG. I turned to F and said, ok, this has sucked, but you know why we're fighting? It's because we finally can! And he looked at me, puzzled, and I said what I said above, and then he relaxed and smiled a little. He said, yeah, I guess we can. (Though we certainly don't want to make it a habit!) You don't quarrel with a dying man. But one who is going to live--all bets are off!
So that's where we are now. Taking it easy. Enjoying the moment. This whole thing has taught us that--all we have is THIS moment. Everything else is gravy.
And oh! During the week he suddenly perked up. I mean, overnight. One day he could hardly walk and the next he was doing laps up and down the hallway, saying "if I don't exercise I'll never get stronger." He did about 15 minutes worth of walking. The week before he could hardly walk from the bedroom to the kitchen, and needed spotting. The same day he had PT, and Rebecca, the best PT in the world, put him through his paces big time. Afterward he rested for a bit, then, when I was going out to run a couple of errands, he said he wanted to come along, and could we go by Bed Bath and Beyond and get a toaster oven? I was floored. But we went, and he walked all around the store, and didn't need spotting. We even went to the VI (Village Inn) and had a very late lunch. The people there said, wow, haven't seen you two in a very long time...
So he's already better. We also finally got the right mask for his apnea treatment, and that is going well. Instead of almost falling over (and sometimes he did fall) in the morning he's damn near perky. Which is almost scary. Mostly it's wonderful. He's back at the computer, working on a new story. He had started a new collection about 3 years ago, then all hell broke loose. So he's back at that--cursing Word 2011 and yelling for me to come get rid of the damn complicated ruler because it's so damned overly complicated--I sigh and fix whatever has gone wrong. But I love it. He's starting to be his old wonderfully funny and cranky self. As I write this he's watching Formula One. He missed 2 seasons, even though he loves Formula One.
He's back. I'm trying to relax and let him do things for himself. It's hard to stop wanting to control everything, even though doing so has been exhausting, you know? This morning he made me coffee, and we sat in the kitchen and just hung out and talked--until F1 came on. Then he shooed me away so he could watch uninterrupted. Shades of the past. And the future, now. A future. Maybe, at some point, I'll stop asking myself if I'll be alone this time next year. I think it could happen. I hope, finally.
So I came into the bedroom and wrote this post, and I can hear, from the kitchen, the sounds of vrooming cars.
Thank you, my friends.