I am in the hospital at Stanford with Ground-Glass Opacity of the Lung Parenchyma and some kind of secondary infection to go with it. Never heard of it? Me neither. http://en.wikipedia.org/wiki/Ground_glass_opacity Apparently it's a rare, late stage response to the Taxol I've been taking for the last 12 weeks, and it basically means that with any exertion at all - like walking 20 yards slowly around the doctors office, my blood oxygen drops below 80%, and also my pulse has been a steady 120 all day. Good times. Doc says they should have me fixed up with prednisone and antibiotics in about a week, but it's probably going to get worse before it gets better.
So, to rewind a bit....I've had this cough for about a month now. Non-productive, annoying. Slowly getting worse and worse. Pleurisy, they thought. And still could have been. I've been getting more and more fatigued, as expected, from the chemo. It's cumulative and they say I can expect to be feeling it for about three months after the end of treatment.
Friday morning I woke up and felt really weird. I got winded walking from the bed to the bathroom. I had to pause and catch my breath at least twice when I tried to climb stairs. There are a lot of stairs in our house. I take them slow, but never have to stop and pant like that.
We left for our road trip. I went into what I'm now calling "standby mode" almost immediately and stayed that way for the entire drive. Eyes closed, aware of my surroundings, not really asleep, not really awake. We checked into our hotel. I had to stop five times to catch my breath just walking down the long corridor to our room. We went to Jen and Bryan's for dinner and wedding cake tasting, and I was still exhausted - to the point that I crawled into their son's bed (he wasn't home) and slept for a couple of hours. We went back to the hotel and I slept until 11:30 and I had to get up and shower and check out. I slept in the car for an hour while we drove to the hotel to meet my family. I slept for another two hours before feeling OK enough to go to the family reunion. We were there for about three hours and then went to dinner with my parents and my sister. I was in bed by 8:30. We got up and had breakfast with them and then hit the road. Standby mode for all but about an hour of it. Went right to bed when I walked in the door. Standby mode until 7pm when I got up to try to eat something (I've also had zero appetite for days) and cancel the trip to Vegas I was supposed to take tomorrow. Back to bed at 9:30.
Up at 6 to drive down to Stanford to do that final mammogram/ultrasound/core biopsy. Bob came down to meet me so he'd be here when we talked to the oncologist. Bob was expecting her to prescribe an albuterol inhaler or something and call it a day.
I told her what had been going on over the weekend so she hooked me up to an oxygen monitor and had me do a lap around the exam rooms in the clinic. My blood oxygen dropped to 82% after I had covered about 20 yards. Also my heart rate has been about 120 all day, still is. And then she said "I think we're going to need to admit you to the hospital tonight."
Oh shit.
Her theory was that I either had a blood clot (that sprained ankle from a few weeks back could have been a cause), or inflammation, or infection in my lungs. She hooked me up to an oxygen tank, put my ass in a wheelchair, and then I had a CT scan. And then we did the core biopsy to close out the cancer study which was the whole point of today anyway. And then we sat around for a few hours while they tried to find a room for me. And then that room didn't have the right heart monitors so they switched rooms.
So now I'm in a really nice corner room - private bath, farthest from the nurses station. It's relatively quiet back here. I've got an oxygen monitor on my ring finger, a bunch of those contact pads and heart monitor stuck to my chest, and oxygen up my nose. Still coughing but it seems to have died back a little bit. The prednisone is trying to keep me up (and succeeding). I'm also having an epic hot flash from it. I'm waiting for an ativan to kick in so I can get some sleep.
None of the docs we talked to tonight were optimistic about me getting out of here tomorrow, and one guy said it could be a full week, depending on how fast I respond to the meds. If they don't see good response (more oxygen, lower pulse) in the next couple of days they'll go into my lungs and have a look around. I really really really hope I don't have to go through that.
In other news, I'll have those biopsy results on Thursday and we'll make the surgery/chemo decision then.
I know y'all think I'm crazy for doing as much as I've been doing, but I feel weirdly vindicated that this didn't happen as a result of me pushing myself "too hard", it's still just the taxol. And that makes me even more worried about the AC, which is supposed to be a lot harder on your body.
Either way, I'm starting the disability paperwork as soon as I have access to my work laptop and expect to take about 6 months off. I've got a few things I need to wrap up still, but I can do those piecemeal over the next couple of weeks, and then I'm done.
So, to rewind a bit....I've had this cough for about a month now. Non-productive, annoying. Slowly getting worse and worse. Pleurisy, they thought. And still could have been. I've been getting more and more fatigued, as expected, from the chemo. It's cumulative and they say I can expect to be feeling it for about three months after the end of treatment.
Friday morning I woke up and felt really weird. I got winded walking from the bed to the bathroom. I had to pause and catch my breath at least twice when I tried to climb stairs. There are a lot of stairs in our house. I take them slow, but never have to stop and pant like that.
We left for our road trip. I went into what I'm now calling "standby mode" almost immediately and stayed that way for the entire drive. Eyes closed, aware of my surroundings, not really asleep, not really awake. We checked into our hotel. I had to stop five times to catch my breath just walking down the long corridor to our room. We went to Jen and Bryan's for dinner and wedding cake tasting, and I was still exhausted - to the point that I crawled into their son's bed (he wasn't home) and slept for a couple of hours. We went back to the hotel and I slept until 11:30 and I had to get up and shower and check out. I slept in the car for an hour while we drove to the hotel to meet my family. I slept for another two hours before feeling OK enough to go to the family reunion. We were there for about three hours and then went to dinner with my parents and my sister. I was in bed by 8:30. We got up and had breakfast with them and then hit the road. Standby mode for all but about an hour of it. Went right to bed when I walked in the door. Standby mode until 7pm when I got up to try to eat something (I've also had zero appetite for days) and cancel the trip to Vegas I was supposed to take tomorrow. Back to bed at 9:30.
Up at 6 to drive down to Stanford to do that final mammogram/ultrasound/core biopsy. Bob came down to meet me so he'd be here when we talked to the oncologist. Bob was expecting her to prescribe an albuterol inhaler or something and call it a day.
I told her what had been going on over the weekend so she hooked me up to an oxygen monitor and had me do a lap around the exam rooms in the clinic. My blood oxygen dropped to 82% after I had covered about 20 yards. Also my heart rate has been about 120 all day, still is. And then she said "I think we're going to need to admit you to the hospital tonight."
Oh shit.
Her theory was that I either had a blood clot (that sprained ankle from a few weeks back could have been a cause), or inflammation, or infection in my lungs. She hooked me up to an oxygen tank, put my ass in a wheelchair, and then I had a CT scan. And then we did the core biopsy to close out the cancer study which was the whole point of today anyway. And then we sat around for a few hours while they tried to find a room for me. And then that room didn't have the right heart monitors so they switched rooms.
So now I'm in a really nice corner room - private bath, farthest from the nurses station. It's relatively quiet back here. I've got an oxygen monitor on my ring finger, a bunch of those contact pads and heart monitor stuck to my chest, and oxygen up my nose. Still coughing but it seems to have died back a little bit. The prednisone is trying to keep me up (and succeeding). I'm also having an epic hot flash from it. I'm waiting for an ativan to kick in so I can get some sleep.
None of the docs we talked to tonight were optimistic about me getting out of here tomorrow, and one guy said it could be a full week, depending on how fast I respond to the meds. If they don't see good response (more oxygen, lower pulse) in the next couple of days they'll go into my lungs and have a look around. I really really really hope I don't have to go through that.
In other news, I'll have those biopsy results on Thursday and we'll make the surgery/chemo decision then.
I know y'all think I'm crazy for doing as much as I've been doing, but I feel weirdly vindicated that this didn't happen as a result of me pushing myself "too hard", it's still just the taxol. And that makes me even more worried about the AC, which is supposed to be a lot harder on your body.
Either way, I'm starting the disability paperwork as soon as I have access to my work laptop and expect to take about 6 months off. I've got a few things I need to wrap up still, but I can do those piecemeal over the next couple of weeks, and then I'm done.
Well that's not a terribly useful diagnosis. What a bummer. Glad you're filing for disability. But I don't think you're crazy for doing all you did - I think you would have *gone* crazy if you'd sat around with nothing. If you want something fun and totally random to read on the kindle in hospital, I just finished _Prairie Bitch_ by the gal that played Nellie on Little House on the Prairie. (She talks a quite a bit about her molestation as a child, but it still manages to be a really fun - if rather bizarre - read.)
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Yeah, I definitely would have been a lot more depressed if nothing else, and to be perfectly honest, I'll probably still be working a smidge in the background to help M and T out when they need it and I am bored. More of a consulting for an hour or two a week kind of thing.
DeleteAt least I'll have the internets to keep me amused. I'm really worried about falling down the passive TV hole - it'll be totally appropriate when I'm recovering from surgeries and on pain meds, but when I'm not, that's sure ticket to depression-land for me, and I've got enough neuropathy in my hands now that I don't think I'll be able to do any sewing.
I'll check the book out. Thanks for the recommendation.
Wow, that sucks that you're stuck in the hospital but I got really scared when you mentioned you might have a pulmonary embolism, glad it's not that! And, hey, at least you still got the study closed out, heh. Hang in there, get some rest, suck up that O2. :)
ReplyDeleteI am glad as well. That was some scary stuff as they were running through the possibilities. I was telling Tonya yesterday that I feel like a 90 year old man. Bald, wheel chair, hospital gown open in the back, oxygen tank with the thing up my nose. Not a look I want to stick with long term.
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