I had my second treatment last week and it was not fun at all. I was in the hospital from Monday to Saturday and it was a very difficult week…between the tiredness, nausea, confusion and all the other crap you experience when on this stuff, it wasn't a lot of fun. By the end of the five days, just brushing my teeth was something I would lay in bed and think about…it's hard to describe what it's like when such a trivial task becomes so difficult, but for some reason it was. One minute I'd be fine, and I would lay down for a quick nap, then wake up six hours later and have no idea what day it was or anything. It's funny though, because within one day of getting out of the hospital I started to feel better and literally got stronger and felt better every hour. By now I am starting to feel normal again and I should be recovered just in time for my next treatment! I've lost my hair, finally and I think I look funny bald. Good thing for hats!!
The worst part is just being in the hospital (it feels like I've spent half of August in the hospital…close to it). The staff at Crouse are awesome, and make it a lot better than it could be, but just laying there in that 8x10 room for so long really takes it's toll on you. You start to feel like you don't want to do anything but stare at the clock and count down the hours until you go home. Because of the chemo I don't eat most of the time I am there (I eat more towards the end of the week), so you get weak and by the last day I am literally sitting there starting at the clock.
The next steps are going back to Houston (this week) to make sure the treatment is working. I am pretty sure it is, but they want to be sure before continuing me on this therapy. I will have the regular tests done and then we will meet with Dr. Ravi to see whether the tumor has shrunk since treatment started, as well as to see if the other spots are still active. It will also be important to make sure there aren't any new tumors. After that, I go back to the hospital on Tuesday to start my third treatment (I go in Tuesday because of the holiday). We are going to talk to Dr. Ravi about the potential of getting the therapy as an outpatient, but I am not going to get my hopes up on that.
Even though these have been the worst weeks of my life, I've still got a great attitude about this. I tell myself all the time that this treatment is what I need to survive this cancer and I am willing to endure it for as long as I need to if it will put me in remission. My support system is amazing - Shana, my parents and family are always there when I need them, and I am so grateful for them. Thanks you guys.
Sunday, August 30, 2009
Wednesday, August 5, 2009
Finally home...
After 9 days in the hospital I finally got home this afternoon. These past few days have been hell for me (I guess I'm difficult!) and I'm still in a tremendous amount of pain from where the chest tube was pulled out today. I am currently neutropenic (extremley low white blood cell count) and my doctors basically ordered me out of the hospital because of this (it's much more risky to be there than to be at home). I guess this is the only time I will be happy to be neutropenic (of course I can't leave the house without a mask or have visitors until my counts come back up which should be a couple of days).
So, I don't even remember the chemo at this point. The surgery, and the issues we had after far overshadow the chemo and I am hoping that the next round (scheduled for August 17th-August 21st) will be an "in and out" in five days sort of thing. We'll see, but as far as I am concerned, after what I went through these past few days, the chemo felt like a walk in the park (that I didn't remember). I have to thank the staff at Crouse Hospital - they were all so wonderful and sympathetic to us. They really make a horrible time better for us.
The surgery I had was called a "pericardial window" and I have to thank Dr. Gorman for his work in getting me into the OR as fast as they did. Because of the chemo cycle this surgery had to be done the day it was, or we would have waited until the next cycle, which could have been very bad for me. Basically Dr. Lutz (the surgeron, who was awesome) went in under my ribs and removed a pretty good sized piece of my pericardium. This allowed for fluid to drain (which hadn't been happening) and amazingly, I'm told that over 1.2 litres of fluid came out. I kept imagining a litre sized gatoraide bottle just sitting in my chest cavity putting pressure on my heart. It's hard to say right now if theres a difference because I am in EXTREME pain from the surgery, but I can say that my airways and breathing do feel great.
When I came awake from surgery I was confused and fighting and had to be restrained. In my life I've never felt more pain and I remember begging for relief as they wheeled me to the recovery room. We would spend the entire night like this. I will say that the staff at Upstate (I was transferred there from Crouse for surgery) were great and they tried their hardest, even though it got very tense. I can't even describe how my family must have felt watching me, screaming in pain with nobody really knowing what to do about it. I know it was pretty rough for me...and today was really the first day the pain dropped below a "six out of ten".
I knew this would happen eventually. I've been living with this cancer for near 10 months now and it's been fairly easy on me, with a few bumps here and there. Now that I will be going through this new chemo things are going to get rough (as they have) but I keep telling myself that I know why I am doing this and this is the means to an end.
Thanks SO MUCH to everyone who texted, emailed, called and visited while I was in the hospital. Though I didn't have many opportunities to respond back, those things mean so much to me. Thanks for all the visitors as well, it was really great to see the family, friends and co-workers who stopped in to support me. And finally, thanks again to my family (and Shana's family) who just never stopped being there for us...my parents, in-laws, siblings and other family members were great. I love you all! (and Shana...you're the best!!).
So, I don't even remember the chemo at this point. The surgery, and the issues we had after far overshadow the chemo and I am hoping that the next round (scheduled for August 17th-August 21st) will be an "in and out" in five days sort of thing. We'll see, but as far as I am concerned, after what I went through these past few days, the chemo felt like a walk in the park (that I didn't remember). I have to thank the staff at Crouse Hospital - they were all so wonderful and sympathetic to us. They really make a horrible time better for us.
The surgery I had was called a "pericardial window" and I have to thank Dr. Gorman for his work in getting me into the OR as fast as they did. Because of the chemo cycle this surgery had to be done the day it was, or we would have waited until the next cycle, which could have been very bad for me. Basically Dr. Lutz (the surgeron, who was awesome) went in under my ribs and removed a pretty good sized piece of my pericardium. This allowed for fluid to drain (which hadn't been happening) and amazingly, I'm told that over 1.2 litres of fluid came out. I kept imagining a litre sized gatoraide bottle just sitting in my chest cavity putting pressure on my heart. It's hard to say right now if theres a difference because I am in EXTREME pain from the surgery, but I can say that my airways and breathing do feel great.
When I came awake from surgery I was confused and fighting and had to be restrained. In my life I've never felt more pain and I remember begging for relief as they wheeled me to the recovery room. We would spend the entire night like this. I will say that the staff at Upstate (I was transferred there from Crouse for surgery) were great and they tried their hardest, even though it got very tense. I can't even describe how my family must have felt watching me, screaming in pain with nobody really knowing what to do about it. I know it was pretty rough for me...and today was really the first day the pain dropped below a "six out of ten".
I knew this would happen eventually. I've been living with this cancer for near 10 months now and it's been fairly easy on me, with a few bumps here and there. Now that I will be going through this new chemo things are going to get rough (as they have) but I keep telling myself that I know why I am doing this and this is the means to an end.
Thanks SO MUCH to everyone who texted, emailed, called and visited while I was in the hospital. Though I didn't have many opportunities to respond back, those things mean so much to me. Thanks for all the visitors as well, it was really great to see the family, friends and co-workers who stopped in to support me. And finally, thanks again to my family (and Shana's family) who just never stopped being there for us...my parents, in-laws, siblings and other family members were great. I love you all! (and Shana...you're the best!!).
Saturday, August 1, 2009
Update...From the Hospital
Hello, thanks SO much for all of the texts, emails and phone calls over the last week. Sorry I haven't been able to get back to people one-on-one like usual, but it's been difficult. It's safe to say that this has been the worst week of my life and I am stuck here (in the hospital) until at least Tuesday as they plan to do the small procedure on Monday (called a pericardial window). They think the fluid around my heart needs to be dealt with so that's why I am still here and why I will be here through the weekend.
The chemo was rough...luckily I slept through the first three days of it (this concerned my doctors a little as they weren't sure why) so it was easier for me than it was for my family. The hope is the next round won't do that to me. I don't really know what happened, one day it was Monday and I don't remember anything from then until about yesterday. I guess that's good...
I will be keeping this blog updated the next few days. The plan right now is to deal with this effusion early in the week and then take a couple of weeks off before I start the second round of this chemo. Thanks everyone for all of your well-wishes, texts and emails - I've got them all and though I haven't responded I've been reading them and I appreciate them.
The chemo was rough...luckily I slept through the first three days of it (this concerned my doctors a little as they weren't sure why) so it was easier for me than it was for my family. The hope is the next round won't do that to me. I don't really know what happened, one day it was Monday and I don't remember anything from then until about yesterday. I guess that's good...
I will be keeping this blog updated the next few days. The plan right now is to deal with this effusion early in the week and then take a couple of weeks off before I start the second round of this chemo. Thanks everyone for all of your well-wishes, texts and emails - I've got them all and though I haven't responded I've been reading them and I appreciate them.
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