It's hard to describe not finding the time to write when you are trapped, effectively, in a hospital room with a laptop. Not really "not finding the time" as just not wanting to, I guess.
Feeling OK, although getting more fatigue and some slight nausea tonight. Mostly getting a tad stir crazy, missing my daughter more every hour. Struggling with what I'm doing here, what's happening to me, the looks of sadness and incredulity I seem to get from everyone for a variety of reasons.
Family has started coming into town to visit, which is of course appreciated. I think they expect me to look more like something out of Schindler's List than I am, though. Hair's still connected and they have me on so many drugs that make you retain water I feel like the Titanic. People don't know what to say, and I get that. Been dealing with that reaction since this all began.
Trying to keep my spirits up -- the first few days it wasn't too bad but there's just no way to sit here, day after day, hour after hour, through the tests and rounds and being woken up and the drugs and the IV and not start really figuring out where you are in life. And where I'm at tonight is not home with my wife, and trying desperately to remember what it's like to feel my daughter's breath on my neck when she gives me a hug.
I want to go home. I don't want to have cancer anymore.
Friday, February 28, 2014
Wednesday, February 26, 2014
Day Zero.
Not going to write too much tonight -- tired and it's been a long, but relatively pleasant, day. The transplant went fine. Had a bunch of fatigue afterwards most likely brought on by the cocktail of drugs they were giving me while doing the transplant (benadryl, etc.) but had a nice dinner, Skyped with Ariana and Amy, talked to my folks and have been just taking it easy and trying not to worry about what's coming next. I guess the chemo starts to kick in pretty soon so it's a waiting game now.
I'll try to post some pics tomorrow and go into more details, just sort of tired and been inside my own head about all of this too much today to want to go over it all here. Very surreal experience.
I'll try to post some pics tomorrow and go into more details, just sort of tired and been inside my own head about all of this too much today to want to go over it all here. Very surreal experience.
Tuesday, February 25, 2014
A Day of Rest.
Had nothing scheduled today as we're at -1 and counting. They use that scale here if I hadn't mentioned it ... -2 for chemo day, day 0 for the transplant, etc. Amy said she'd get me a few Gigi's cupcakes to celebrate my "new" birthday tomorrow.
A nothing day here still consists of tests, vitals every 4 hours, and several drugs taken prophylactically (sp?) for nausea, viruses and bacteria. I'm also hooked up to a constant IV so I have to pee constantly -- I'm sure there's some value to that but with all of the other information I've had to absorb it's simply slipped my mind.
Had a phone session with the therapist back home today. She emails me to check in quite a bit, which is nice. Our session went fine and was only half the alloted time -- quite frankly I'm not really that upset or torn up about any of this. I'd attribute most of that to the LexaPro, a bit of whitewashing from the staff here (not in a malicious or misleading way, they just tend to focus on the best possible outcomes for obvious reasons) and the fact that this is all so fucking surreal.
A nothing day here still consists of tests, vitals every 4 hours, and several drugs taken prophylactically (sp?) for nausea, viruses and bacteria. I'm also hooked up to a constant IV so I have to pee constantly -- I'm sure there's some value to that but with all of the other information I've had to absorb it's simply slipped my mind.
Had a phone session with the therapist back home today. She emails me to check in quite a bit, which is nice. Our session went fine and was only half the alloted time -- quite frankly I'm not really that upset or torn up about any of this. I'd attribute most of that to the LexaPro, a bit of whitewashing from the staff here (not in a malicious or misleading way, they just tend to focus on the best possible outcomes for obvious reasons) and the fact that this is all so fucking surreal.
Monday, February 24, 2014
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Let's Get Ready to Ruuuuuuumble ...
Typing this from my hospital room; checked in around lunchtime today ahead of doing my chemotherapy tonight. The drug of choice this evening will be Melphelan, which is categorized as a high-dose chemotherapy. They do cryotherapy along with it as well, which is a fancy way of saying I chew on ice for 30 minutes before the infusion, during the hour-long infusion, and for 30 minutes after. Apparently this significantly reduces the risk of developing the mouth sores common with this chemo regimen.
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Said goodbye to Ariana today. I think that will be the hardest part of this in most ways. I can handle the pain, the illness (at least I believe strongly that I can) but missing her ... man, that's hard. I was breaking up last night doing her bath and reading her a bedtime story as I realized it's the last time I get to do that in person until almost mid-March. Seeing as how two nights is the longest I've ever been away from her this will be the true test of fortitude.
Jeff, my wife's step-father, got into town Saturday night. He's so good with Ariana it's almost laughable and she loves him, so I know not only is she in good hands but that it will take a huge load off of Amy's shoulders. We went to Fogo de Chao last night as a treat and a "last supper" sort of meal, which was awesome, and followed it up with a good breakfast this morning at Over Easy North.
Today I do a ton of testing so they can make sure I'm not infected with anything, and then off to chemo. Wish me luck.
Said goodbye to Ariana today. I think that will be the hardest part of this in most ways. I can handle the pain, the illness (at least I believe strongly that I can) but missing her ... man, that's hard. I was breaking up last night doing her bath and reading her a bedtime story as I realized it's the last time I get to do that in person until almost mid-March. Seeing as how two nights is the longest I've ever been away from her this will be the true test of fortitude.
Jeff, my wife's step-father, got into town Saturday night. He's so good with Ariana it's almost laughable and she loves him, so I know not only is she in good hands but that it will take a huge load off of Amy's shoulders. We went to Fogo de Chao last night as a treat and a "last supper" sort of meal, which was awesome, and followed it up with a good breakfast this morning at Over Easy North.
Today I do a ton of testing so they can make sure I'm not infected with anything, and then off to chemo. Wish me luck.
Thursday, February 20, 2014
Stolen Naps.
Ariana has skipped her naps for the past two days. I, on the other hand, have taken one for the past two afternoons. I think it's partially due to the Neupogen leaving my system and partially due to increased activity -- we're doing a lot more lately to maximize my fun time with Ari, so the last several days have been a whirlwind of eating out, going to the zoo, going to one of those bounce houses with wall-to-wall trampolines, etc.
Nothing much new on the doctor front. We met with Dr. M. for a final pre-admission office visit on Tuesday. He reiterated that everything looks good, called me an overachiever for collecting enough cells for three transplants, and walked us through the tour de suck (my phrase) of how I'll be feeling in the hospital and when. Apparently 8-11 days post transplant are when it's going to feel the worst. I'd have to check my schedule but given my luck in the last year that's probably when I told most people to visit.
On the bright side he lightened up on the "how it will be post-transplant" speech and said I should be fine, just avoid sick people and buffets.
I'm scheduled to get a PICC line in my arm (maybe they always go there, no idea) on Friday, and then I'm admitted to the hospital Monday. Crazy, and kind of scary.
Missing Mischief and Trouble a lot lately. It feels so odd, not having cats, and hits me at weird times. I must be dreaming about them or something because I tend to feel the worst about it when I first wake up. I've lost a few cats over my life but have never felt like this before; I mean I've always been crushed, but this sense of loss is truly overwhelming and it's been a while now. I have a digital picture frame that I loaded with photos of Amy and Ariana and one of me and Mischief at the hospital before he was euthanized, and it breaks me down every time it flicks across the screen. I think I see him curled up on the bed for a moment one afternoon, but it's just my black fleece. I keep expecting to find him in my laundry basket, or to come running when I open something that crinkles or has a noisy lid.
I had hoped that being in a new surrounding like this, instead of being at home, would alleviate this to some degree but it isn't. On the bright side Dr. M. prescribed me some Xanax to help me sleep through the night again (stopped doing that in the last week) so at least I have another pill to combat it.
Nothing much new on the doctor front. We met with Dr. M. for a final pre-admission office visit on Tuesday. He reiterated that everything looks good, called me an overachiever for collecting enough cells for three transplants, and walked us through the tour de suck (my phrase) of how I'll be feeling in the hospital and when. Apparently 8-11 days post transplant are when it's going to feel the worst. I'd have to check my schedule but given my luck in the last year that's probably when I told most people to visit.On the bright side he lightened up on the "how it will be post-transplant" speech and said I should be fine, just avoid sick people and buffets.
I'm scheduled to get a PICC line in my arm (maybe they always go there, no idea) on Friday, and then I'm admitted to the hospital Monday. Crazy, and kind of scary.
Missing Mischief and Trouble a lot lately. It feels so odd, not having cats, and hits me at weird times. I must be dreaming about them or something because I tend to feel the worst about it when I first wake up. I've lost a few cats over my life but have never felt like this before; I mean I've always been crushed, but this sense of loss is truly overwhelming and it's been a while now. I have a digital picture frame that I loaded with photos of Amy and Ariana and one of me and Mischief at the hospital before he was euthanized, and it breaks me down every time it flicks across the screen. I think I see him curled up on the bed for a moment one afternoon, but it's just my black fleece. I keep expecting to find him in my laundry basket, or to come running when I open something that crinkles or has a noisy lid.
I had hoped that being in a new surrounding like this, instead of being at home, would alleviate this to some degree but it isn't. On the bright side Dr. M. prescribed me some Xanax to help me sleep through the night again (stopped doing that in the last week) so at least I have another pill to combat it.
Sunday, February 16, 2014
Quiet Sunday.
Got another 4.6 million stem cells yesterday so they pronounced me finished and let me get my catheter line taken out today. Wasn't too painful although I probably should have skipped looking when the nurse asked me if I wanted to see it. Shnikes.
So 10 million cells harvested, well above the 6 I was shooting for.
Had to take it easy after I got home because with a borderline platelet count (borderline as in any lower and they would have given me some) this won't heal as fast and can be serious if it rips apart or gets infected. No lifting heavy stuff, no bending over, etc. No showering either until at the earliest tomorrow morning, which is getting old. Need a shave as well.
I only have two more appointments before I go into the hospital and start the chemotherapy at this point -- a pre-admission office visit with Dr. M. and to get my PICC line installed.
As it gets down to the wire I'm getting more and more nervous about everything coming up. As with previous milestones in this treatment, things are about to ratchet up the seriousness quotient again.
Woke up this morning having thoughts about Mischief as well and how much I miss him, which hasn't really helped either. Wish he was here.
My thoughts are disjointed, sort of like this entry. Trying to figure out what to do with Ariana this week since when I go into the hospital a week from tomorrow we won't see each other for almost 3 weeks (she can't visit me). Maybe we'll go to the zoo or something -- like to maximize my time with her, and I need to write her another letter this week too. Amy's step-father gets into town Saturday which will be great -- not just to get some help, but we've got a fun dinner out planned (Brazilian steakhouse) and I know Ari will love seeing her grandfather.
Sad today, for whatever reason/s, and just can't shake it. It's been creeping up slowly but surely lately as I get closer to going into the hospital. It's easy, even when laying there being harvested, to forget what you are there for and what you are doing. As I've written before, however, when the reality comes crashing back it can be pretty brutal. Not sure there's ever any escaping that, any normalcy to be found here if I look too hard.
Just another cancer patient looking out from inside.
So 10 million cells harvested, well above the 6 I was shooting for.
Had to take it easy after I got home because with a borderline platelet count (borderline as in any lower and they would have given me some) this won't heal as fast and can be serious if it rips apart or gets infected. No lifting heavy stuff, no bending over, etc. No showering either until at the earliest tomorrow morning, which is getting old. Need a shave as well.
I only have two more appointments before I go into the hospital and start the chemotherapy at this point -- a pre-admission office visit with Dr. M. and to get my PICC line installed.
As it gets down to the wire I'm getting more and more nervous about everything coming up. As with previous milestones in this treatment, things are about to ratchet up the seriousness quotient again.
Woke up this morning having thoughts about Mischief as well and how much I miss him, which hasn't really helped either. Wish he was here.
My thoughts are disjointed, sort of like this entry. Trying to figure out what to do with Ariana this week since when I go into the hospital a week from tomorrow we won't see each other for almost 3 weeks (she can't visit me). Maybe we'll go to the zoo or something -- like to maximize my time with her, and I need to write her another letter this week too. Amy's step-father gets into town Saturday which will be great -- not just to get some help, but we've got a fun dinner out planned (Brazilian steakhouse) and I know Ari will love seeing her grandfather.
Sad today, for whatever reason/s, and just can't shake it. It's been creeping up slowly but surely lately as I get closer to going into the hospital. It's easy, even when laying there being harvested, to forget what you are there for and what you are doing. As I've written before, however, when the reality comes crashing back it can be pretty brutal. Not sure there's ever any escaping that, any normalcy to be found here if I look too hard.
Just another cancer patient looking out from inside.
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