Well, I guess that's all relative but for me, I can finally relax a bit, thank God. I still don't have a fully functioning bathroom but can see the light at the end of the tunnel. I've been in one place for more than a few weeks, nice not to have to deal with the hassle of flying. Most importantly, I saw Dr. Ram this Wednesday and the results of my blood draw were (for me) a remarkable, 67K! We were both in shock and he was asking me if I quit taking the drug or had I taken a couple days off and of course told him no. So, I think my body has finally adjusted to the RAD001 and at least clinically, I'm still noticing a big improvement in my back where I am almost virtually pain free now!
I can't tell you how blessed I feel...
Hopefully this will at least get me through the summer and beyond.
Time to go attempt to go play golf for the first time in a long time.
This is awesome!
Friday, June 3, 2011
Tuesday, May 24, 2011
Quick Update
So, went to get my blood checked again yesterday and my platelets inched up to 45K (from 37K). If I was still on the SAHA trial, I'd be booted off by now. However, I guess they just changed the rules for this RAD001 trial and apparently I can go all the way down to 25K. Of course, I don't want this to happen. I already deal with chronic nose bleeds and have bruises all over my body. That said, with the alternative being no treatment and my back pain returning, I'll just roll with this the best I can. So, I started the therapy back up again last night and due to go in for another poke on Monday. I'm going to start looking like a junkie if I have to keep this up, my arms are getting pretty bruised, kinda embarrassing...
Anyway, beyond all of that, life is pretty good at the moment. I think spring is finally here and my place is slowly coming together.
That's all I have for now, thanks for the positive thoughts :)
Chris
Anyway, beyond all of that, life is pretty good at the moment. I think spring is finally here and my place is slowly coming together.
That's all I have for now, thanks for the positive thoughts :)
Chris
Friday, May 20, 2011
Not quite RAD...
I just remembered when I lived in Socal how people used to say Rad all the time. "That's pretty Rad dude"... I think it's the only place I've ever lived where people say Rad, funny.
Anyway, I wish this was a rosy post but unfortunately, I had to stop the Everolimus or RAD001 on Wednesday temporarily (hopefully). Turns out, my platelets went all the way down to 37K. While I've been lower (of course, I had a stem cell transplant and all my counts were once zero), I don't remember it being this low for a while. This considering that only a couple weeks ago my platelets were at 104K. So, while I definitely think the drug is doing something to the disease, it's also wreaking havoc on my counts like we feared. So, the plan is to take 5 days off, go in Monday, have my blood checked again and see how fast they (counts) go back up on their own.
I just hope to God my body somehow can adjust to this and my counts will stabilize. If not, there's always a chance maybe they can reduce my dose but Dr. Ram didn't seem too enthusiastic about this. I guess we'll see what happens Monday.
Anybody care to join me on the roller coaster?!
Chris
Anyway, I wish this was a rosy post but unfortunately, I had to stop the Everolimus or RAD001 on Wednesday temporarily (hopefully). Turns out, my platelets went all the way down to 37K. While I've been lower (of course, I had a stem cell transplant and all my counts were once zero), I don't remember it being this low for a while. This considering that only a couple weeks ago my platelets were at 104K. So, while I definitely think the drug is doing something to the disease, it's also wreaking havoc on my counts like we feared. So, the plan is to take 5 days off, go in Monday, have my blood checked again and see how fast they (counts) go back up on their own.
I just hope to God my body somehow can adjust to this and my counts will stabilize. If not, there's always a chance maybe they can reduce my dose but Dr. Ram didn't seem too enthusiastic about this. I guess we'll see what happens Monday.
Anybody care to join me on the roller coaster?!
Chris
Tuesday, May 17, 2011
Through the fire
Whew, made it out of that alive, thank God. That was a pretty nasty whatever it was and glad it's gone. All I have to deal with now is the mouth/throat sores and an ever increasing itchy rash that seems to move around my body. It's been especially bad on the backs of my legs and calves. I don't think it's the Hodgkins itch though, more of a surface itch.
So, I'm back here in gloomy Michigan! This spring apparently has sucked so far just like the winter. Even though I was sick, glad I had a chance to get a few days of sun down in Delray :) I'm hopeful that by this weekend the weather will get nicer, seems to help everything up here... One nice thing is I've had some bare patches in my lawn that I've put grass seed down and it seems to be taking because of the rainy damp weather! My neighbor was joking that we're going to have "yard wars" now that there are four of us who are either unemployed or work from the house. I really dig gardening (no pun intended, haha) for the aesthetic aspect of it plus it's very relaxing to boot. I have years to catch up on these guys tho as this house had been a rental for years and nothing had been done as far as raking leaves (thus the bald spots) or weed control. I went over with a layer of weed and feed and the dandelions just laughed at me! In fact, I think it caused them to grow even more. Had to go buy some heavier duty stuff and we'll see who's laughing after they get a dose of ACE hardware's finest, ha!
I'm really liking my projects although at the same time can be a major source of stress. I realize it's a process but sometimes it gets difficult living in chaos (as if my life isn't chaotic enough). Yesterday, I was hanging greenboard in my new to be remodeled bathroom and the most dubious luck you could have, drilled a drywall screw dead center right through my hot water feed pipe. I knew something was wrong after the screw was halfway in and I heard a sound that best resembles the first turn of the cap on a bottle of pop/soda. I wasn't exactly sure what it was and decided to back the screw out and the next thing I know, there's hot water shooting across my bathroom all the way into my bedroom! I tried for a second to put something over it but then quickly realized I needed to get to the basement to shut of the water supply. By then, the damage had been done and because it's an upstairs bedroom, the water came through the ceiling into the kitchen, yikes. I forgot how fun this stuff is ;)
So I'm off to the hardware store to look for a coupler to fix the hole in the pipe then will get back to putting the bathroom together.
Hopefully everything else will start falling into place after that.
Speaking of falling into place, one nice thing is I think this RAD001 is doing something good! My back is so much better, can't even tell you... There are still moments when I get a twinge if I twist the wrong way but I'm so much stronger back there. It was to the point before that it even hurt to inhale or sneeze/cough. This is such a blessing and I couldn't be more thankful. Now, if only I can keep my platelets up high enough to continue... Dr. Ram was pretty concerned last time I was there regarding this and even mentioned I may have to skip a dose if they dip below 75K. Turns out last time, I was 75K right on the button. I told him that I'd been taking 500 mg of Naproxen/Aleve (this is known to lower platelets) so I haven't taken any all week hoping it makes a difference.
Guess I'll find out tomorrow...
Hope everyone has a great week!
So, I'm back here in gloomy Michigan! This spring apparently has sucked so far just like the winter. Even though I was sick, glad I had a chance to get a few days of sun down in Delray :) I'm hopeful that by this weekend the weather will get nicer, seems to help everything up here... One nice thing is I've had some bare patches in my lawn that I've put grass seed down and it seems to be taking because of the rainy damp weather! My neighbor was joking that we're going to have "yard wars" now that there are four of us who are either unemployed or work from the house. I really dig gardening (no pun intended, haha) for the aesthetic aspect of it plus it's very relaxing to boot. I have years to catch up on these guys tho as this house had been a rental for years and nothing had been done as far as raking leaves (thus the bald spots) or weed control. I went over with a layer of weed and feed and the dandelions just laughed at me! In fact, I think it caused them to grow even more. Had to go buy some heavier duty stuff and we'll see who's laughing after they get a dose of ACE hardware's finest, ha!
I'm really liking my projects although at the same time can be a major source of stress. I realize it's a process but sometimes it gets difficult living in chaos (as if my life isn't chaotic enough). Yesterday, I was hanging greenboard in my new to be remodeled bathroom and the most dubious luck you could have, drilled a drywall screw dead center right through my hot water feed pipe. I knew something was wrong after the screw was halfway in and I heard a sound that best resembles the first turn of the cap on a bottle of pop/soda. I wasn't exactly sure what it was and decided to back the screw out and the next thing I know, there's hot water shooting across my bathroom all the way into my bedroom! I tried for a second to put something over it but then quickly realized I needed to get to the basement to shut of the water supply. By then, the damage had been done and because it's an upstairs bedroom, the water came through the ceiling into the kitchen, yikes. I forgot how fun this stuff is ;)
So I'm off to the hardware store to look for a coupler to fix the hole in the pipe then will get back to putting the bathroom together.
Hopefully everything else will start falling into place after that.
Speaking of falling into place, one nice thing is I think this RAD001 is doing something good! My back is so much better, can't even tell you... There are still moments when I get a twinge if I twist the wrong way but I'm so much stronger back there. It was to the point before that it even hurt to inhale or sneeze/cough. This is such a blessing and I couldn't be more thankful. Now, if only I can keep my platelets up high enough to continue... Dr. Ram was pretty concerned last time I was there regarding this and even mentioned I may have to skip a dose if they dip below 75K. Turns out last time, I was 75K right on the button. I told him that I'd been taking 500 mg of Naproxen/Aleve (this is known to lower platelets) so I haven't taken any all week hoping it makes a difference.
Guess I'll find out tomorrow...
Hope everyone has a great week!
Wednesday, May 11, 2011
Spoke too soon...
Just when I get all pumped up about feeling good, the RAD001 decides to sneak up on me and wreak havoc. My body must be adjusting to the medicine as I have the chills, bad headache, mouth and throat soreness, body aches and woozy head. Kinda feels like a really bad flu. Hopefully it won't last long and I can get to enjoying Soflo...
Just wanted to send out some prayers for someone who I've never met but have followed his story ever since I was diagnosed. His name is Andy Keeley and unfortunately, Andy is having a tough time right now. He's been fighting Hodgkins it seems like forever and it's spread to his lungs badly and him and Kimberly his wife have decided to call in Hospice. This is really sad and never easy to stomach. All my best to the Keeley's. I hope you find comfort.
Hoping for a better day tomorrow.
Life is such a roller coaster...
Just wanted to send out some prayers for someone who I've never met but have followed his story ever since I was diagnosed. His name is Andy Keeley and unfortunately, Andy is having a tough time right now. He's been fighting Hodgkins it seems like forever and it's spread to his lungs badly and him and Kimberly his wife have decided to call in Hospice. This is really sad and never easy to stomach. All my best to the Keeley's. I hope you find comfort.
Hoping for a better day tomorrow.
Life is such a roller coaster...
Monday, May 9, 2011
Feeling more at ease...
It's amazing how much more at ease and less stressed out I am in the period of less than a week...
I started the Everolimus last Wednesday and after some initial bumps (mainly GI and fatigue stuff which is nothing) I really don't even notice I'm taking a drug. In fact, dare I say that I'm already starting to feel positive effects from the RAD as my back pain has been easily cut in half, yeehaww! I also notice how much more relaxed I am. I have to say, that moment (and during) when I found out the SAHA was going bye bye was one of the more stressful anxiety ridden times of my life besides the initial diagnosis and major treatment era. That actually has to stand alone as nothing will ever compare to that.
Anyway, I have renewed peace of mind and an even better outlook on life now that I've gone through all my awful stuff. I'm feeling better, my place is coming together (I've got the following going in the last week, a stand up shower, my stove, washer and dryer and all the crap and debris in my yard cleaned up. It's starting to feel more like a home now rather than a bomb shelter.
It's more like a scene out of a Dexter episode but at least I can take a shower standing up! Another couple of weeks and I'll post the after picture, it should be sharp I hope...
So, it's off to Karmanos now for blood work. I'm leaving to go back down to Florida Wednesday to grab some stuff like my car, bike, tools, etc. and driving back up once again (this time solo, no Chili).
Speaking of Chili, she's all of the sudden decided she likes sleeping on the bed rather than under! She's been my rock, haha.
Hoping this upward trend continues. Actually, more than hoping, I expect this upward trend to continue! Part of my new attitude...
Hope all is well with everyone who reads this.
BTW, happy belated Mothers Day to all you Mom's out there and to my very special Mother Cindy. Mom, as I told you yesterday, thank you for being there for me and for all the unconditional love you give me every day. I don't know what I'd do without you. Love you very much...
Cheers!
Chris
I started the Everolimus last Wednesday and after some initial bumps (mainly GI and fatigue stuff which is nothing) I really don't even notice I'm taking a drug. In fact, dare I say that I'm already starting to feel positive effects from the RAD as my back pain has been easily cut in half, yeehaww! I also notice how much more relaxed I am. I have to say, that moment (and during) when I found out the SAHA was going bye bye was one of the more stressful anxiety ridden times of my life besides the initial diagnosis and major treatment era. That actually has to stand alone as nothing will ever compare to that.
Anyway, I have renewed peace of mind and an even better outlook on life now that I've gone through all my awful stuff. I'm feeling better, my place is coming together (I've got the following going in the last week, a stand up shower, my stove, washer and dryer and all the crap and debris in my yard cleaned up. It's starting to feel more like a home now rather than a bomb shelter.
It's more like a scene out of a Dexter episode but at least I can take a shower standing up! Another couple of weeks and I'll post the after picture, it should be sharp I hope...
So, it's off to Karmanos now for blood work. I'm leaving to go back down to Florida Wednesday to grab some stuff like my car, bike, tools, etc. and driving back up once again (this time solo, no Chili).
Speaking of Chili, she's all of the sudden decided she likes sleeping on the bed rather than under! She's been my rock, haha.
Hoping this upward trend continues. Actually, more than hoping, I expect this upward trend to continue! Part of my new attitude...
Hope all is well with everyone who reads this.
BTW, happy belated Mothers Day to all you Mom's out there and to my very special Mother Cindy. Mom, as I told you yesterday, thank you for being there for me and for all the unconditional love you give me every day. I don't know what I'd do without you. Love you very much...
Cheers!
Chris
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