I'd hate to jinx things by prematurely declaring victory, but so far I have managed to not get sick. And while I don't think any of Dylan, Lorien, or our nanny have yet completely recovered back to full normalcy, none of them are really what I'd consider outwardly sick any more.
Monday, January 28, 2013
Wednesday, January 23, 2013
Trying to avoid the plague
Dylan got sick early Monday morning. Our nanny got sick sometime today after she was here this morning. Lorien got sick last night.
I've been feeling something vaguely getting closer to normal for the first time in more than 3 months. I went to yoga earlier this week. I've been riding my bike around town when running errands. I even started working again, half-time from home. I really, really, really don't want to get sick. I'm taking as many precautions as I reasonably can (e.g. I'm doing a load of laundry right now so that I can sleep alone in the basement), but I worry that it might just be inevitable.
Wish me luck.
I've been feeling something vaguely getting closer to normal for the first time in more than 3 months. I went to yoga earlier this week. I've been riding my bike around town when running errands. I even started working again, half-time from home. I really, really, really don't want to get sick. I'm taking as many precautions as I reasonably can (e.g. I'm doing a load of laundry right now so that I can sleep alone in the basement), but I worry that it might just be inevitable.
Wish me luck.
Sunday, January 20, 2013
Rolling right along
I continue to slowly feel better. I still feel a little bit like a have a cold, but it's gotten to the point where it's fairly minimal. If things were just ordinary, I probably wouldn't think too much about it. Except for the fact that it's been going on for more than 3 months now. Lorien still has a bit of a cold as well -- in fact, I think at this point she might be a little worse off than I am. Although hers has been going on for only 3 weeks, but that's still long enough to be pretty annoying.
I've been continuing to go on walks most days around the neighborhood. It's helped that, unlike my last posting, it's actually gotten quite warm and pleasant lately. Yesterday I felt good enough to try getting on my bike, for the first time in quite some time. A month, perhaps? It was a pretty short and easy ride, just to South Berkeley, relatively flat. The last time I did a similar ride, which had also been the first attempt in a while, the return trip was kind of grueling, and the overall experience convinced me that maybe I wasn't quite in good enough shape yet to be riding my bike. Thankfully, this time, the results were much better, and I hope to continue gradually increasing my activity level.
I'm also continuing to go in weekly for blood work and meeting with my oncologist, and my counts are looking pretty good. Good enough that I got the go-ahead to get a flu shot when I went in this past Thursday.
So I'm cautiously optimistic. Of course, the last time I got cautiously optimistic following a gradual improvement following a hospital stay, I ended up back in the hospital again. But I've already gone longer since hospital visit #2 compared to the time between #1 and #2, so that's a little something to celebrate.
The bottom line is that I've decided that I'm well enough to start working again. Tomorrow. It'll have been a 5 week hiatus since my last attempt at working, which itself lasted for 5 weeks (before hospital stay #1). Hopefully this return will be for good. Or at least until I feel well enough that we finally take a much delayed vacation (tentatively to France, sans Dylan).
For the time being it's going to be just half time. I'm not making any particular plans yet about when that will be ramped up to full time. It will depend on how I feel. I'd also like for now to leave enough free time so that I can continue to get some exercise on most days, as I think it's somewhat important for my overall recovery.
But even though my counts look good, I'm still concerned that my immune system is weakened. An office may not be quite as bad as a preschool or daycare, but it still can be a fairly unforgiving breeding ground for spreading germs. Especially during a flu season as bad as this one. So for the time being, I'm going to be working 100% from home. We need to do a little work down in the basement to make our office setup hospitable for 2 people to be working simultaneously. Which will be one of my first tasks tomorrow morning.
I've been continuing to go on walks most days around the neighborhood. It's helped that, unlike my last posting, it's actually gotten quite warm and pleasant lately. Yesterday I felt good enough to try getting on my bike, for the first time in quite some time. A month, perhaps? It was a pretty short and easy ride, just to South Berkeley, relatively flat. The last time I did a similar ride, which had also been the first attempt in a while, the return trip was kind of grueling, and the overall experience convinced me that maybe I wasn't quite in good enough shape yet to be riding my bike. Thankfully, this time, the results were much better, and I hope to continue gradually increasing my activity level.
I'm also continuing to go in weekly for blood work and meeting with my oncologist, and my counts are looking pretty good. Good enough that I got the go-ahead to get a flu shot when I went in this past Thursday.
So I'm cautiously optimistic. Of course, the last time I got cautiously optimistic following a gradual improvement following a hospital stay, I ended up back in the hospital again. But I've already gone longer since hospital visit #2 compared to the time between #1 and #2, so that's a little something to celebrate.
The bottom line is that I've decided that I'm well enough to start working again. Tomorrow. It'll have been a 5 week hiatus since my last attempt at working, which itself lasted for 5 weeks (before hospital stay #1). Hopefully this return will be for good. Or at least until I feel well enough that we finally take a much delayed vacation (tentatively to France, sans Dylan).
For the time being it's going to be just half time. I'm not making any particular plans yet about when that will be ramped up to full time. It will depend on how I feel. I'd also like for now to leave enough free time so that I can continue to get some exercise on most days, as I think it's somewhat important for my overall recovery.
But even though my counts look good, I'm still concerned that my immune system is weakened. An office may not be quite as bad as a preschool or daycare, but it still can be a fairly unforgiving breeding ground for spreading germs. Especially during a flu season as bad as this one. So for the time being, I'm going to be working 100% from home. We need to do a little work down in the basement to make our office setup hospitable for 2 people to be working simultaneously. Which will be one of my first tasks tomorrow morning.
Sunday, January 13, 2013
One day at a time
It was cold today. Well, cold by Bay Area standards at least. Meaning it got down to freezing last night, and was in the 40s during the day. (I know, live here long enough and you become a cold weather wimp.) We had been thinking about going to a hike in Redwood Park, but decided that today might not be the best day to spend in the shade of a redwood forest. So instead we took a walk around the neighborhood.
Our destination was John Hinkel Park, up in the hills just a little bit past Indian Rock. The former is a park none of us had ever been to, the latter is a park we've been to many times. We stopped at Indian Rock first. Dylan was significantly more comfortable climbing up the rock this time, compared to his last time there over the summer. It was a very clear day, and he pointed out the boats on the water in the Bay below and in the distance. We then continued on to the second park -- I had never even heard of this park until somewhat recently; somehow I ended up on a web page that was talking about it and mentioned an amphitheatre built into a hill there. That was indeed there, but the find that we were really excited about was the old playground. Swings on a huge structure with very long chains that swing up way high compared to the small ones at most playgrounds. And best of all: an actual, old-fashioned see-saw. I've been searching for one of these for a while, and was pretty disappointed when I realized that just about all of the playgrounds now only have these really lame springy things and not real see-saws. Not something I had ever really noticed until I became a parent, how safe and boring most playgrounds are today. There was one other kid in the playground, a little bit older than Dylan (around 4), and the two of them really enjoyed riding the see-saw, even if their weight was a little mismatched and I needed to give Dylan a bit of an assistance on every round.
Any way, the whole reason I'm writing this is that the total walk we did was about 3 miles. Plus a fair amount of elevation gain. Not something I probably would have thought that much about before, but it was quite a bit given my recent relative level of inactivity. Perhaps the most strenuous bit of anything I've done since our visit back east a few months back. I was pretty tired and worn out afterwards, but I did okay.
So even though I still feel like I have a cold a bit, and it's still somewhat annoying, I'm doing okay. And trying to slowly push my activity level. It was a nice walk. And Dylan had a lot of fun. (He rode in the Chariot for the majority of the walk -- I can't imagine how long it all would have taken at the pace of toddler.)
Our destination was John Hinkel Park, up in the hills just a little bit past Indian Rock. The former is a park none of us had ever been to, the latter is a park we've been to many times. We stopped at Indian Rock first. Dylan was significantly more comfortable climbing up the rock this time, compared to his last time there over the summer. It was a very clear day, and he pointed out the boats on the water in the Bay below and in the distance. We then continued on to the second park -- I had never even heard of this park until somewhat recently; somehow I ended up on a web page that was talking about it and mentioned an amphitheatre built into a hill there. That was indeed there, but the find that we were really excited about was the old playground. Swings on a huge structure with very long chains that swing up way high compared to the small ones at most playgrounds. And best of all: an actual, old-fashioned see-saw. I've been searching for one of these for a while, and was pretty disappointed when I realized that just about all of the playgrounds now only have these really lame springy things and not real see-saws. Not something I had ever really noticed until I became a parent, how safe and boring most playgrounds are today. There was one other kid in the playground, a little bit older than Dylan (around 4), and the two of them really enjoyed riding the see-saw, even if their weight was a little mismatched and I needed to give Dylan a bit of an assistance on every round.
Any way, the whole reason I'm writing this is that the total walk we did was about 3 miles. Plus a fair amount of elevation gain. Not something I probably would have thought that much about before, but it was quite a bit given my recent relative level of inactivity. Perhaps the most strenuous bit of anything I've done since our visit back east a few months back. I was pretty tired and worn out afterwards, but I did okay.
So even though I still feel like I have a cold a bit, and it's still somewhat annoying, I'm doing okay. And trying to slowly push my activity level. It was a nice walk. And Dylan had a lot of fun. (He rode in the Chariot for the majority of the walk -- I can't imagine how long it all would have taken at the pace of toddler.)
Thursday, January 10, 2013
I don't want a goldfish
I don't think I'd mentioned this before -- I think I had been planning on it, but never got around to it. A little over a year ago, sometime between Christmas and New Year's 2011, Dirk's health suddenly nosedived, he was very lethargic, and barely eating and drinking. We took him to the vet, and found out that he had chronic kidney failure. He was near death at the time, and they thought that even if he recovered, he had perhaps 6 months left to live. Thankfully, he managed to pull through that episode much better than expected. For the past year he'd been doing pretty good, and having what appeared to be a satisfying life. We had to give him special food (trying to keep both Dirk and Selena's different special foods separate and each going only to the appropriate cat was somewhat of a challenge), and we had to regularly give him injections of subcutaneous fluid (originally every day, later we backed off to every other day). But things were going well, and Dirk was starting to tolerate Dylan's company much better. In fact, sometime in December, Dirk started sleeping in Dylan's crib, which made Dylan quite happy. Although sometimes Dylan was a little annoying and unrealisitc in his demands. Like when he was supposed to be sleeping and was instead complaining and I came in to check on him and he was sitting up in his crib pointing to his lap and demanding, "Dirk! Lap!" Anyway, perhaps I was a bit delusional thinking that this could all go on indefinitely.
Almost exactly a year after the 2011 episode, Dirk's health took another sudden downturn, and he was again barely eating and drinking, and had noticeably lost weight. We took him to the vet on the 31st of December. He was once again having serious kidney issues, but it was worse than that. Besides wanting to hospitalize him and treat him for that, they were talking about a blood transfusion, and he had developed ulcers in his mouth, and even if we were to bring him back from the brink again, it was only a matter of time before this happened again, and this time it was less likely to be 12 months in the future. I very much wanted to do something to help him -- but Lorien was the voice of reason, cautioning me about us going too far down the path of what turns out to be a hopefuless situation. I didn't want to do that, and we've seen other people do it with their pets, but it can be hard to decide when is the right time to let go -- I don't think it's usually obvious except in retrospect. And I was feeling kind of karmically guilty about the whole situation. After all, I'm also battling a life threatening illness, and I don't think I'd appreciate someone giving up on me just quite yet. But it's not the same; as Lorien pointed out that I have much better odds, and I'm obviously capable of communicating about my illness that Dirk isn't. If we weren't going to do anything to save him, I really wanted to be able to just bring him home and give him palliative care and let him live out the rest of his life in peace. But the hard truth is that were really just weren't equipped to be able to do that.
In the end, we made the difficult decision to put Dirk to sleep that day, while he was at the vet. We tried to get Dylan to say goodbye, but he wasn't really able to grasp the reality of the situation. A few times since he's made reference to Dirk's blanket (in his bed), or said other things about Dirk, and we've simply explained to him that Dirk was sick and Dirk isn't coming back, and he seems to be willing to accept that.
I had been originally thinking about blogging about this later that day, but I felt I needed a little time to just chill and decompress. Then by the next day I was sick, and by the day after that I was in the hospital. Which put this a little bit on the back burner. On the positive side, having a 102F fever does wonders to take your mind off of the guilt you're feeling about putting your cat to sleep.
Dirk will be missed. I believe that he enjoyed himself in life, and he was certainly a bit of a fixture in the neighborhood, greeting all sorts of passers by from the sidewalk. He would have been 13 in February.
Dirk is survived by Selena, who is almost 17. Maybe Dylan will some day be gentle enough to her that she trusts him enough to sit on his lap.
[Probably only 1 or maybe 2 of my readers will get the title reference. Hint, it's from a song.]
No news
The bone marrow biopsy was negative. As were all of the cultures.
So there's no sign of any cancer returning. And there's also no discernible reason that I should be getting sick. But I have been sick.
The only reasonable explanation I've been offered is that my immune system is still weakened from treatment (even though my counts now look fine), and that it ought to all get better.
I've been trying to make a point of most days (when it's not too cold and/or wet) getting out at least a little bit and walk somewhat around the neighborhood to get some exercise. I don't want to just spend all my time at home turning into a sloth.
So there's no sign of any cancer returning. And there's also no discernible reason that I should be getting sick. But I have been sick.
The only reasonable explanation I've been offered is that my immune system is still weakened from treatment (even though my counts now look fine), and that it ought to all get better.
I've been trying to make a point of most days (when it's not too cold and/or wet) getting out at least a little bit and walk somewhat around the neighborhood to get some exercise. I don't want to just spend all my time at home turning into a sloth.
Wednesday, January 09, 2013
Back home, round 2
It's been about a half week that I've been home. While I continue to feel somewhat better, I still wouldn't say that I feel "better" for real. In another day or two it will be 3 months since I've felt basically normal. It's getting to be a bit of a drag.
Sometimes I'm feeling optimistic, that this is the beginning of a turnaround, getting better for real, and that I just need to be patient. But then I remember that's that what I was hoping the last time I was released, and 2 weeks later I was back in the hospital. Maybe I'll feel a tiny bit safer once I pass the 2 week mark. I've been pondering starting a "X days since a hospitalization" sign, but that just seems like kind of a bad idea. I'm no longer quite as worried about the prospect of Dylan growing up without a father (although it still is a possibility), but I am more worried about Dylan growing up with a father who's constantly battling various sicknesses, and doesn't have the energy to be very active or do very much that's physical with him. That would really suck.
And while Lorien continues to assume a far greater parenting role than me in the short term, the physical and emotional challenges of caring for a 2 year old are also taking a bit of a toll on me. Dylan is overall reasonably well behaved, but he's still a 2 year old, and he seems to have an endless amount of energy. I guess it was a bit of a shock returning to that from the hospital, as I spent far too much of my first day home snapping at him. I'm trying to do a better job of not taking out my troubles on him.
I'm sorry if this is all coming out sounding overly depressing. It's not really that bad; I am doing okay. Really.
I had a followup appointment with the pulmonologist yesterday. As expected, nothing really came of it. There's nothing conclusive to say from either the broncoscopy, or any of the resulting cultures. In other words, from his point of view [the lungs], he can't find anything explicit wrong with me. Nevertheless, he did reiterate something that I believe the radiation oncologist said a while back -- that even if I've reached the point where my observable white blood counts have come back, there can be more going on that's not easily quantifiable that's contributing to me having a weakened immune system. But that if the counts have come back, it's likely that the rest will follow, and in his opinion, I am likely to eventually get better.
Tomorrow I have a followup appointment with my oncologist, and I should get the results of the bone marrow biopsy. I'm not expecting it to show anything either. I'll let you all know.
Sometimes I'm feeling optimistic, that this is the beginning of a turnaround, getting better for real, and that I just need to be patient. But then I remember that's that what I was hoping the last time I was released, and 2 weeks later I was back in the hospital. Maybe I'll feel a tiny bit safer once I pass the 2 week mark. I've been pondering starting a "X days since a hospitalization" sign, but that just seems like kind of a bad idea. I'm no longer quite as worried about the prospect of Dylan growing up without a father (although it still is a possibility), but I am more worried about Dylan growing up with a father who's constantly battling various sicknesses, and doesn't have the energy to be very active or do very much that's physical with him. That would really suck.
And while Lorien continues to assume a far greater parenting role than me in the short term, the physical and emotional challenges of caring for a 2 year old are also taking a bit of a toll on me. Dylan is overall reasonably well behaved, but he's still a 2 year old, and he seems to have an endless amount of energy. I guess it was a bit of a shock returning to that from the hospital, as I spent far too much of my first day home snapping at him. I'm trying to do a better job of not taking out my troubles on him.
I'm sorry if this is all coming out sounding overly depressing. It's not really that bad; I am doing okay. Really.
I had a followup appointment with the pulmonologist yesterday. As expected, nothing really came of it. There's nothing conclusive to say from either the broncoscopy, or any of the resulting cultures. In other words, from his point of view [the lungs], he can't find anything explicit wrong with me. Nevertheless, he did reiterate something that I believe the radiation oncologist said a while back -- that even if I've reached the point where my observable white blood counts have come back, there can be more going on that's not easily quantifiable that's contributing to me having a weakened immune system. But that if the counts have come back, it's likely that the rest will follow, and in his opinion, I am likely to eventually get better.
Tomorrow I have a followup appointment with my oncologist, and I should get the results of the bone marrow biopsy. I'm not expecting it to show anything either. I'll let you all know.
Monday, January 07, 2013
Saturday, January 05, 2013
I guess sometimes wishes come true
I'm going home today. Yay.
Really not that much to report. Nothing positive from any of the cultures, but it's too early for final results on many of them. No news from the bone marrow biopsy yet. Fever is still gone. I'm feeling better, but still not great. Congestion, stuffiness in the head, sore throat -- but it's all in the manageable zone. I'll continue the diflucan (anti-fungal) once I get out of here, but oral instead of IV.
Anyway, I'm kinda hungry to eat some breakfast. I've discovered the minimal breakfast that they can't screw up too horribly, and it's the same thing I order every day -- 1 hard boiled egg, and 1 bagel and cream cheese. I'm starting to get a little sick of it, but not as sick of it as I am of the one lunch/dinner item that I keep ordering which is the same damn crappy tuna sandwich. That was the item that we discovered at the end of Lorien's extended stay when Dylan was born just sucked, and that was a complement, b/c everything else was inedible. I've probably ingested way too much mercury during this stay. Oh well, focus on the short term problems....
But I digress, and breakfast awaits. Hopefully my next post will be from home.
Really not that much to report. Nothing positive from any of the cultures, but it's too early for final results on many of them. No news from the bone marrow biopsy yet. Fever is still gone. I'm feeling better, but still not great. Congestion, stuffiness in the head, sore throat -- but it's all in the manageable zone. I'll continue the diflucan (anti-fungal) once I get out of here, but oral instead of IV.
Anyway, I'm kinda hungry to eat some breakfast. I've discovered the minimal breakfast that they can't screw up too horribly, and it's the same thing I order every day -- 1 hard boiled egg, and 1 bagel and cream cheese. I'm starting to get a little sick of it, but not as sick of it as I am of the one lunch/dinner item that I keep ordering which is the same damn crappy tuna sandwich. That was the item that we discovered at the end of Lorien's extended stay when Dylan was born just sucked, and that was a complement, b/c everything else was inedible. I've probably ingested way too much mercury during this stay. Oh well, focus on the short term problems....
But I digress, and breakfast awaits. Hopefully my next post will be from home.
Friday, January 04, 2013
I want to go home
The fever is gone, and it's now been almost 24 hours since I took any tylenol (today was an experiment to make sure it wasn't just being kept down b/c of the tylenol). I wouldn't say I'm exactly feeling great, but good enough to say that I really really really want to get the hell out of here and go home.
Not a lot of specific news to report. I very briefly saw my doctor right before I took a shower earlier this evening (OMG, a shower, what a wonderful invention), and at the time she hadn't had a chance to look at anything to see if there was any news to report wrt all of the various cultures, or the bone marrow biopsy. I assumed that I would get a chance to talk to her again tonite (and that part of that would be discussing when I could go home), but I should learn not to make any assumptions.
Anyway, I just wanted to give a bit of an update, even if it's kind of a non-update.
Not a lot of specific news to report. I very briefly saw my doctor right before I took a shower earlier this evening (OMG, a shower, what a wonderful invention), and at the time she hadn't had a chance to look at anything to see if there was any news to report wrt all of the various cultures, or the bone marrow biopsy. I assumed that I would get a chance to talk to her again tonite (and that part of that would be discussing when I could go home), but I should learn not to make any assumptions.
Anyway, I just wanted to give a bit of an update, even if it's kind of a non-update.
Thursday, January 03, 2013
Back in the hospital again
I had plans for various blog postings, but like so many things in my life, they're currently on hold.
I'm sadly typing this from a hospital bed, once again. I'm feeling a little better today, but yesterday was pretty miserable. Temperature spiked at 102.2F, and my throat was so sore that I was having trouble eating and drinking, leading to malnourishment and dehydration.
The current thoughts about what's up are both a fungal infection in the mouth and throat (looking at my tongue right now is nasty -- I'll spare you a picture), and acute sinusitis.
I'm also about to get a bone marrow biopsy again (last one I had was right before treatment), which may be able to tell us more than simple blood work. I can't say that I'm particularly looking forward to it. The initial few days of hospitalization (when I was blogging like crazy) went by in a bit of a blur, and I don't remember all of the details (maybe I should read my blog!), but I do recall the bone marrow biopsy being particularly unpleasant. Oh well, at least I'll get some morphine out of it. Perhaps that will lead to more entertaining blogging again.
I'm sadly typing this from a hospital bed, once again. I'm feeling a little better today, but yesterday was pretty miserable. Temperature spiked at 102.2F, and my throat was so sore that I was having trouble eating and drinking, leading to malnourishment and dehydration.
The current thoughts about what's up are both a fungal infection in the mouth and throat (looking at my tongue right now is nasty -- I'll spare you a picture), and acute sinusitis.
I'm also about to get a bone marrow biopsy again (last one I had was right before treatment), which may be able to tell us more than simple blood work. I can't say that I'm particularly looking forward to it. The initial few days of hospitalization (when I was blogging like crazy) went by in a bit of a blur, and I don't remember all of the details (maybe I should read my blog!), but I do recall the bone marrow biopsy being particularly unpleasant. Oh well, at least I'll get some morphine out of it. Perhaps that will lead to more entertaining blogging again.
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