Ok, please don't feel neglected. I did forget about updating you, but I did NOT stop loving you!
So It's been six weeks, and here we are. Not a whole lot of new stuff to say.
Oh wait... yes there is... I STARTED WORKING!
Yup! I just finished my first week of work at Morgan Stanley. They found a Pre-Trainee position for me, and I'll stay in this position until August when I start the training program.
I'm really excited. I get a good vibe from my colleagues and it will also give me a lot of exposure and insight into the Morgan Stanley Infrastructure.
The days are long... My commute is 2 hours door-to-door, but I'm surviving. I was able to tether my cell to my laptop, so at least I have full internet on my laptop for the absurdly long train ride. It not only makes the ride go quicker, but also allows me to be productive in that off time.
Other then that, still working on the Christmas Show! We put up the lights today, and now we just have to wire them up.
Well that's it for now. Try not to hate me and I'll try to write more often then once a month.
Sunday, November 09, 2008
Tuesday, September 23, 2008
AMAZING NEWS!!!!!
So when today began, I thought it would just be a usual Tuesday...
Go to Sloan, get my bloodwork, joke with the nurses, see the doctor, and then finally head on home. However, I had no idea what was in store for me!
So we all know that last week I got my T-Cell count back. Well there is also another test they do. They look at your PHA level. This tells them how well your immune system in functioning. You could have 500 T-Cells, but if you have a low PHA level, then their not really doing anything.
That level didn't come back until today...
Well, my PHA level is 233,395!
THAT'S A NORMAL PHA LEVEL
What that means is I've been given the green light to start living my normal life! However, until I get a few more T-Cells the doctor wants me to steer clear of sushi. But in the meantime, that means I can go back to work, and do all those other wonderful things!!
So I gave Morgan Stanley a call, and pretty much let them know I'm ready when they are!
Hopefully with the turmoil of the market, they can still find a place for me! :-)
Until next time sports fans!
Go to Sloan, get my bloodwork, joke with the nurses, see the doctor, and then finally head on home. However, I had no idea what was in store for me!
So we all know that last week I got my T-Cell count back. Well there is also another test they do. They look at your PHA level. This tells them how well your immune system in functioning. You could have 500 T-Cells, but if you have a low PHA level, then their not really doing anything.
That level didn't come back until today...
Well, my PHA level is 233,395!
THAT'S A NORMAL PHA LEVEL
What that means is I've been given the green light to start living my normal life! However, until I get a few more T-Cells the doctor wants me to steer clear of sushi. But in the meantime, that means I can go back to work, and do all those other wonderful things!!
So I gave Morgan Stanley a call, and pretty much let them know I'm ready when they are!
Hopefully with the turmoil of the market, they can still find a place for me! :-)
Until next time sports fans!
Monday, September 22, 2008
My Weekend Out...
So I should be in bed... but I can't sleep. That's what I get for taking a nap at around 3 o'clock today. In the mean time, I'll write about my awesome weekend!
So yesterday, two of my WONDERFUL friends got married!
That's Mr. & Mrs. Dan Spadora right there!
So now you may be thinking, "Gee Nick... you don't have your 200 T-Cells, how did you attend a wedding?"
Well, I asked the doctors and they gave me the OK! They understand that they can't keep me in a bubble forever and that it wouldn't be fair to keep me away from an occasion such as this.
It was a beautiful ceremony, and one rockin' reception with great food and great friends! We had quite the Marist contingency and we partied well into the night.
On a more personal note, it felt so good to just be "normal" again. To re-enter the real world... even if it was just a quick furlough. Now originally, I thought the experience would feel like a tease. Only giving me a small glimpse of what life will be like once I'm back to 100%.
However, it had quite the opposite effect. It really gave me renewed strength. It produced the same thought with a totally different meaning. This IS what awaits me... I'm so close and nothing can stop me now!
Look out world, here I come!!
So yesterday, two of my WONDERFUL friends got married!
That's Mr. & Mrs. Dan Spadora right there!So now you may be thinking, "Gee Nick... you don't have your 200 T-Cells, how did you attend a wedding?"
Well, I asked the doctors and they gave me the OK! They understand that they can't keep me in a bubble forever and that it wouldn't be fair to keep me away from an occasion such as this.
It was a beautiful ceremony, and one rockin' reception with great food and great friends! We had quite the Marist contingency and we partied well into the night.
On a more personal note, it felt so good to just be "normal" again. To re-enter the real world... even if it was just a quick furlough. Now originally, I thought the experience would feel like a tease. Only giving me a small glimpse of what life will be like once I'm back to 100%.
However, it had quite the opposite effect. It really gave me renewed strength. It produced the same thought with a totally different meaning. This IS what awaits me... I'm so close and nothing can stop me now!
Look out world, here I come!!
Tuesday, September 16, 2008
Results...
The Results Are In!!
I've made it to
160
Not too shabby, considering last month they only went up 9.
Hopefully this means by next month I will surpass the 200 mark!
I've made it to
160
Not too shabby, considering last month they only went up 9.
Hopefully this means by next month I will surpass the 200 mark!
Friday, September 12, 2008
Still Nothing...
As of 5pm... still nothing!
I guess I'll be waiting over the weekend for an answer.
BOO!!!
I guess I'll be waiting over the weekend for an answer.
BOO!!!
Waiting...
As of 10 AM no T-Cell results.
Each time they do this test, I swear it takes longer.
Hopefully something by the end of the day!
Each time they do this test, I swear it takes longer.
Hopefully something by the end of the day!
Friday, September 05, 2008
The Look On His Face...
Yesterday was quite the long day for me!
I was up bright and early to get to Sloan for 8 AM.
The day started with a PET Scan, continued with some IVIG (passive immune system), and ended with a CT scan. I left just in time for rush hour... 5pm!
It only took me 2hr 15mins to get home... oh How I love the LIE!
My route home takes me up the FDR Drive and across the Triborough Bridge... which is where today's story begins!
Somehow, my EZ-Pass fell off the dashboard and landed under the seat. Unfortunately, I don't realize this until I'm sitting at the toll booth and wondering why the gate isn't lifting! As I frantically look for the EZ-Pass a TBTA Cop (Tri-Borough Transit Authority) makes his way over to my car. This is not an unusual occurance. EZ-Passes with a weak battery usually need to be scanned manually in order for them to work.
Now the TBTA cop looked like a young guy... maybe 23ish... and seemed new on the job. As he's waiting for me to hand him my EZ-Pass, this little thing attached his belt starts Beeping in a high-low type fashion. (An Alarm) He removes this device from his belt and his face drops. His expression was confusion with a little bit of fear mixed in.
What was that beeping on his belt? It was a Radiation Detector! That's right folks... I'm radioactive!!! As you recall, I had a PET scan earlier that day. For a PET Scan they inject you with a radioactive sugar, which the machine is able to read. It's a great way for the doctors to observe metabolic activity in your body. The downside is... YOU'RE RADIOACTIVE!! In a post 9/11 world, especially near the bridges and tunnels, law enforcement is pretty keen on trying to make sure nobody sneaks a dirty bomb into the city.
I could tell from the officers face he was thinking the following: "They told us when this thing beeps, it's detecing radiation... but it's never done that before... holy **** what did I just find? Is this guy a terrorist?"... So on and so forth. The TBTBA officer nervously asks if I have anything in my trunk. I think for a second and realize what he's holding in his hand must be the radiation detector. I ask him, and he confirms it. I chuckle and respond "Oh Don't worry... It's just me!"
This doesn't ease his fears. I then show him my hospital card, bracelet, and the medical wrap on my arm from where the IV was. At that point, he wasn't sure what to do. I could see him looking around for any colleagues near by that he could flag over... unfortuntaely no one was close enough. He reluctantly allowed me to continue and I laughed the entire way home.
Anyways... thats my funny story for the day.
My Day At Sloan...
These scans were the routine PET/CT scans that make sure I'm still cancer free. For those of you who have never had a CT scan, you're usually required to drink oral contrast... ONE LITER of oral contrast! After almost two years of dealing with these scans every 2 months, I guess you could say I used to chugging back the stuff. They try to make it palatable by mixing it with Crystal Light. Needless to say, I shudder whenever I just see a crystal light package.
Now you also need to drink the contrast for a PET scan. Usually, we're able to schedule the scans back to back so I only need to drink the nasty stuff once! Unfortuantely, yesterday I wasn't that lucky. The PET Scan was in the morning at 9AM, and the CT Scan was in the afternoon at 4pm. So yesterday I was force fed 2 Liters of Raspberry Crystal Light. I still cringe just thinking about it.
Other then that, everything went off without a hitch, and I'm doing fine!
Next week we have another T-Cell Count! Look for results on Friday!
I was up bright and early to get to Sloan for 8 AM.
The day started with a PET Scan, continued with some IVIG (passive immune system), and ended with a CT scan. I left just in time for rush hour... 5pm!
It only took me 2hr 15mins to get home... oh How I love the LIE!
My route home takes me up the FDR Drive and across the Triborough Bridge... which is where today's story begins!
Somehow, my EZ-Pass fell off the dashboard and landed under the seat. Unfortunately, I don't realize this until I'm sitting at the toll booth and wondering why the gate isn't lifting! As I frantically look for the EZ-Pass a TBTA Cop (Tri-Borough Transit Authority) makes his way over to my car. This is not an unusual occurance. EZ-Passes with a weak battery usually need to be scanned manually in order for them to work.
Now the TBTA cop looked like a young guy... maybe 23ish... and seemed new on the job. As he's waiting for me to hand him my EZ-Pass, this little thing attached his belt starts Beeping in a high-low type fashion. (An Alarm) He removes this device from his belt and his face drops. His expression was confusion with a little bit of fear mixed in.
What was that beeping on his belt? It was a Radiation Detector! That's right folks... I'm radioactive!!! As you recall, I had a PET scan earlier that day. For a PET Scan they inject you with a radioactive sugar, which the machine is able to read. It's a great way for the doctors to observe metabolic activity in your body. The downside is... YOU'RE RADIOACTIVE!! In a post 9/11 world, especially near the bridges and tunnels, law enforcement is pretty keen on trying to make sure nobody sneaks a dirty bomb into the city.
I could tell from the officers face he was thinking the following: "They told us when this thing beeps, it's detecing radiation... but it's never done that before... holy **** what did I just find? Is this guy a terrorist?"... So on and so forth. The TBTBA officer nervously asks if I have anything in my trunk. I think for a second and realize what he's holding in his hand must be the radiation detector. I ask him, and he confirms it. I chuckle and respond "Oh Don't worry... It's just me!"
This doesn't ease his fears. I then show him my hospital card, bracelet, and the medical wrap on my arm from where the IV was. At that point, he wasn't sure what to do. I could see him looking around for any colleagues near by that he could flag over... unfortuntaely no one was close enough. He reluctantly allowed me to continue and I laughed the entire way home.
Anyways... thats my funny story for the day.
My Day At Sloan...
These scans were the routine PET/CT scans that make sure I'm still cancer free. For those of you who have never had a CT scan, you're usually required to drink oral contrast... ONE LITER of oral contrast! After almost two years of dealing with these scans every 2 months, I guess you could say I used to chugging back the stuff. They try to make it palatable by mixing it with Crystal Light. Needless to say, I shudder whenever I just see a crystal light package.
Now you also need to drink the contrast for a PET scan. Usually, we're able to schedule the scans back to back so I only need to drink the nasty stuff once! Unfortuantely, yesterday I wasn't that lucky. The PET Scan was in the morning at 9AM, and the CT Scan was in the afternoon at 4pm. So yesterday I was force fed 2 Liters of Raspberry Crystal Light. I still cringe just thinking about it.
Other then that, everything went off without a hitch, and I'm doing fine!
Next week we have another T-Cell Count! Look for results on Friday!
Tuesday, September 02, 2008
Wednesday, August 27, 2008
It's been a slow month...
Well... It's been a slow month. The usual routine...
Tuesday - Sloan Check-up @NYC
Thursday - Sloan Lab Work @Commack
I've been trying to get myself into a better schedule. Earlier in the summer I was waking up between 10 & 11 every day. I've finally gotten myself alive by 8 on a daily basis.
I'll keep this 8 o'clock schedule for about a week... then try and push it back to 7. Eventually get it to 6 in preparation for me having to enter the "real world."
On a side note, I've decide to start something productive...
Next Sunday (Sept 7th) I start an EMT Course! It's every Sunday until March. This is something I've wanted to do for a while. Even if I don't have the time to join a volunteer corps afterward... it should be some pretty useful skills to have!
Tuesday - Sloan Check-up @NYC
Thursday - Sloan Lab Work @Commack
I've been trying to get myself into a better schedule. Earlier in the summer I was waking up between 10 & 11 every day. I've finally gotten myself alive by 8 on a daily basis.
I'll keep this 8 o'clock schedule for about a week... then try and push it back to 7. Eventually get it to 6 in preparation for me having to enter the "real world."
On a side note, I've decide to start something productive...
Next Sunday (Sept 7th) I start an EMT Course! It's every Sunday until March. This is something I've wanted to do for a while. Even if I don't have the time to join a volunteer corps afterward... it should be some pretty useful skills to have!
Friday, August 08, 2008
New Picture!
As you can see from the top of the page... there is a new picture!
We have a T-Cell Count Meter!
The Middle of the chart shows 200, which would be what I need for the doctor to start lessening restrictions. The end of the chart would be 400, which is considered the low end of normal.
We have a T-Cell Count Meter!
The Middle of the chart shows 200, which would be what I need for the doctor to start lessening restrictions. The end of the chart would be 400, which is considered the low end of normal.
Results...
Well my T-Cell went up... just not as much as I had hoped.
They are at 107.
So In one month they went from 98 to 107.
But in the two months prior they went from 0 to 98.
I don't know why they've slowed, but the doctor's say that it's normal because of my age.
::Sigh::
Keep on truckin...
They are at 107.
So In one month they went from 98 to 107.
But in the two months prior they went from 0 to 98.
I don't know why they've slowed, but the doctor's say that it's normal because of my age.
::Sigh::
Keep on truckin...
Thursday, August 07, 2008
Thursday, July 31, 2008
Oops... Small Mistake...
Hello Hello!
So does everyone remember the "growing clot" I had in my chest?
Because of that little stinker, I've been taking blood thinners for the past three weeks.
Well, last week my doctor wanted to do an echocardiogram (Ultrasound of the heart) so we could get a clearer picture on the clot and make it easier to track it as time goes on. Well, when they did the echo, they didn't see anything! Nothing at all!!
Hmm...
So now they took my original CT scan (where they thought they saw the growing clot) and brought it to another radiologist. He looks at and determines that there was never a clot to begin with!
So in one corner we have a radiologist saying there is a clot and in the other corner, a radiologist saying there isn't a clot!
Now what?
The tiebreaker is now a TEE. A Transesophageal Echocardiogram. When you get an echo, they place the probe on your chest and move it around. However because the ultrasound has to travel through your chest wall and muscles and all that, you can only get a certain level of clarity... which is usually enough.
In a TEE, they actually place the probe down your throat and look at your heart from the opposite direction. This provides them a clearer picture of certain areas of the heart.
A cardiologist performed the TEE yesterday. I was put under anesthesia, so I didn't feel a thing.
The procedure took about 30 minutes and when we were all done...
drum roll please...
NO CLOT!
There was nothing there! Everything looked normal and I am able to stop taking the blood thinners! Thank God!!!
So I guess an "Oops" is in order for that original radiologist. But really, it's better to be safe then sorry. What if the second guy was wrong? So now we can be sure I am clot free and continue the road to recovery...
Sneak Preview...
T-Cell Count next week, I should have results by the 7th!
So does everyone remember the "growing clot" I had in my chest?
Because of that little stinker, I've been taking blood thinners for the past three weeks.
Well, last week my doctor wanted to do an echocardiogram (Ultrasound of the heart) so we could get a clearer picture on the clot and make it easier to track it as time goes on. Well, when they did the echo, they didn't see anything! Nothing at all!!
Hmm...
So now they took my original CT scan (where they thought they saw the growing clot) and brought it to another radiologist. He looks at and determines that there was never a clot to begin with!
So in one corner we have a radiologist saying there is a clot and in the other corner, a radiologist saying there isn't a clot!
Now what?
The tiebreaker is now a TEE. A Transesophageal Echocardiogram. When you get an echo, they place the probe on your chest and move it around. However because the ultrasound has to travel through your chest wall and muscles and all that, you can only get a certain level of clarity... which is usually enough.
In a TEE, they actually place the probe down your throat and look at your heart from the opposite direction. This provides them a clearer picture of certain areas of the heart.
A cardiologist performed the TEE yesterday. I was put under anesthesia, so I didn't feel a thing.
The procedure took about 30 minutes and when we were all done...
drum roll please...
NO CLOT!
There was nothing there! Everything looked normal and I am able to stop taking the blood thinners! Thank God!!!
So I guess an "Oops" is in order for that original radiologist. But really, it's better to be safe then sorry. What if the second guy was wrong? So now we can be sure I am clot free and continue the road to recovery...
Sneak Preview...
T-Cell Count next week, I should have results by the 7th!
Wednesday, July 23, 2008
Quick Hello
Nothing new to report... just saying hello!
I'm doing great and keeping busy.
We won't check my T-Cells again until the beginning of August... so until then I just keep truckin' along.
I setup a page dedicated to my past and future Christmas light displays.
Have a look!
http://christmas.romanelliupdate.com
I'm doing great and keeping busy.
We won't check my T-Cells again until the beginning of August... so until then I just keep truckin' along.
I setup a page dedicated to my past and future Christmas light displays.
Have a look!
http://christmas.romanelliupdate.com
Monday, July 14, 2008
Fruits of my labor...
So as I mentioned in a previous post, I've been toiling away at a personal project of mine.
Behold Unity Messaging:
http://www.unity-messaging.com
My fully hosted, complete messaging service!
I offer the ability for any type of organization large or small, (business, non-profit, church, school etc) to send E-Mail, Text Messages, and Phone Calls to all their users.
It's the perfect way to get out a message for whatever the case may be. Important Homeowners Association meeting coming up? Perhaps the time to the little league baseball game has been changed! Use Unity to let everyone know! E-Mail, Text Messages, and Phone... it has it all covered!
I'm really proud of it and was great way to not only keep me busy, but also keep all my skills sharp, as I still won't be starting work for a few months.
Anybody you know might be interested? Feel free to let them know!
Take care,
Nick
Behold Unity Messaging:
http://www.unity-messaging.com
My fully hosted, complete messaging service!
I offer the ability for any type of organization large or small, (business, non-profit, church, school etc) to send E-Mail, Text Messages, and Phone Calls to all their users.
It's the perfect way to get out a message for whatever the case may be. Important Homeowners Association meeting coming up? Perhaps the time to the little league baseball game has been changed! Use Unity to let everyone know! E-Mail, Text Messages, and Phone... it has it all covered!
I'm really proud of it and was great way to not only keep me busy, but also keep all my skills sharp, as I still won't be starting work for a few months.
Anybody you know might be interested? Feel free to let them know!
Take care,
Nick
Wednesday, July 09, 2008
If It's Not One Thing...
...It's another!
Tuesday was quite the long day for me. I was at Sloan by 7 AM. I had my CT scans and my PET Scan. After those were all finished i had to get my IVIG (Passive Immune System.) It was a very busy day. I finally left the city at round 5 o'clock and it only took me a glorious 2 HOURS to get home!! Ohhh how much I love the LIE.
Luckily I was at Sloan long enough for them to give me all my test results the same day! Still no more cancer! Everything is great!!
Except we have a new little problem...
If you remember, since I started treatment I had a mediport put in my chest. Essentially, it's a central line. When they took it out to put in a temporary triple line for my bone marrow transplant, they noticed that the vein it was in was all clotted up... this happens from having a line in for an extended period of time... no big deal.
However, on this latest round of scans they noticed that the clotting grew.
Medical term: Thrombosis
There could be two reasons for this: 1. Once the clot forms, it's easy for the clot to grow, and may just be a one time thing, or 2. I have a genetic defect which causes clotting.
They took some blood to run the genetic tests, but those won't be back for two weeks. In either case, I've been put on blood thinners and that will do the trick. However, if it is one of those genetic defects, I might have to be on the blood thinners for quite a while. It's one shot twice a day... no big deal.
But all in all, no cancer is the most important thing!
Tuesday was quite the long day for me. I was at Sloan by 7 AM. I had my CT scans and my PET Scan. After those were all finished i had to get my IVIG (Passive Immune System.) It was a very busy day. I finally left the city at round 5 o'clock and it only took me a glorious 2 HOURS to get home!! Ohhh how much I love the LIE.
Luckily I was at Sloan long enough for them to give me all my test results the same day! Still no more cancer! Everything is great!!
Except we have a new little problem...
If you remember, since I started treatment I had a mediport put in my chest. Essentially, it's a central line. When they took it out to put in a temporary triple line for my bone marrow transplant, they noticed that the vein it was in was all clotted up... this happens from having a line in for an extended period of time... no big deal.
However, on this latest round of scans they noticed that the clotting grew.
Medical term: Thrombosis
There could be two reasons for this: 1. Once the clot forms, it's easy for the clot to grow, and may just be a one time thing, or 2. I have a genetic defect which causes clotting.
They took some blood to run the genetic tests, but those won't be back for two weeks. In either case, I've been put on blood thinners and that will do the trick. However, if it is one of those genetic defects, I might have to be on the blood thinners for quite a while. It's one shot twice a day... no big deal.
But all in all, no cancer is the most important thing!
Thursday, July 03, 2008
I Should Play Lotto!
So It's 98 days post transplant and I get a call from the doctor.
They took my T Cell count on Tuesday, and the results are back.
So how many do you think we got? 60 days ago, it was at 0. How many could we possibly get.
Well guess what... we got 98!!!! WOOT!!! Not Too Shabby!
I need at least 200 for the doctors to start lifting the quarantine, and those could come as early as the end of this month, but even if it's the end of August... we're in great shape!
So 98 T-Cells at 98 days post transplant... Today's July 3rd...
7 3 9 8 - Win 4
I'm playing lotto tomorrow... Hey! Ya never know :-)
They took my T Cell count on Tuesday, and the results are back.
So how many do you think we got? 60 days ago, it was at 0. How many could we possibly get.
Well guess what... we got 98!!!! WOOT!!! Not Too Shabby!
I need at least 200 for the doctors to start lifting the quarantine, and those could come as early as the end of this month, but even if it's the end of August... we're in great shape!
So 98 T-Cells at 98 days post transplant... Today's July 3rd...
7 3 9 8 - Win 4
I'm playing lotto tomorrow... Hey! Ya never know :-)
Friday, June 20, 2008
Oops...
Sorry Sorry Sorry...
I know I have this thing called a blog and I'm supposed to update it... but I tend to forget.
Which is maybe a good thing. I forget because there's not much to write about.
The doctor's are still happy with me, I feel good... and I'm even getting some hair back!
Next week we'll be taking our second T Cell count. It's only been three months, so I don't expect anything. (Hopefully we get something better then zero!) I don't expect to see any significant numbers until the end of August (6 months)
Other then that, I've been spending time working on a programming project for my little consulting business. It's about 75% of the way there and hopefully can make me a little money this summer.
I've also started planning for this year's Christmas display! I hope to improve on the techniques I used up at Marist last year and create an unforgettable display for the neighborhood!
Until we meet again!
I know I have this thing called a blog and I'm supposed to update it... but I tend to forget.
Which is maybe a good thing. I forget because there's not much to write about.
The doctor's are still happy with me, I feel good... and I'm even getting some hair back!
Next week we'll be taking our second T Cell count. It's only been three months, so I don't expect anything. (Hopefully we get something better then zero!) I don't expect to see any significant numbers until the end of August (6 months)
Other then that, I've been spending time working on a programming project for my little consulting business. It's about 75% of the way there and hopefully can make me a little money this summer.
I've also started planning for this year's Christmas display! I hope to improve on the techniques I used up at Marist last year and create an unforgettable display for the neighborhood!
Until we meet again!
Friday, May 30, 2008
Hello Hello..
Just a quick note to say hi! It's been two weeks, and even though there's nothing to report I can't leave everyone hanging!
I'm feeling good and the doctor's are happy. I'm still on house arrest (more or less) and we'll probably take the next T Cell count in a few weeks. Not too hopeful for anything amazing since the last count was 0. I need at least 200 before they start taking away restrictions.
But I must be off... it's the girlfriend's birthday weekend and I have many things to tend to :-)
Till next time!
-Nick
P.S
Tuesday I'll be at sloan all day for my monthly IVIG (Passive Immune System) expect a longer post then!
I'm feeling good and the doctor's are happy. I'm still on house arrest (more or less) and we'll probably take the next T Cell count in a few weeks. Not too hopeful for anything amazing since the last count was 0. I need at least 200 before they start taking away restrictions.
But I must be off... it's the girlfriend's birthday weekend and I have many things to tend to :-)
Till next time!
-Nick
P.S
Tuesday I'll be at sloan all day for my monthly IVIG (Passive Immune System) expect a longer post then!
Friday, May 16, 2008
Day 50!!
I know you've all been wondering where I've been, but I just wanted to wait until day 50 to make a post. I don't know why, it doesn't have any real significance, but it is a nice big round number!
Everything is going well, I'm still feeling great and the doctors are happy. I started coming down with a sinus "thing" earlier in the week, but since starting antibiotics it has resolved.
This entire week has been "Senior Week" at Marist. Essentially one week long party. I felt bad that my friends wouldn't be able to celebrate it with me, so I made a life-sized cardboard stand-up and sent it to them! Needless to say, completely inappropriate pictures will soon follow. :-)
Tomorrow will also be Marist's Commencement Ceremony. This year they'll be broadcasting it over the web, so my parents and I will be able to watch.
This morning I also got an unexpected surprise. At around 11 AM the phone rings. The caller ID says "Marist College." I'm wondering who it could be. Is it someone from the Music Department, someone from the school of computer science... no... It was President of Marist College, Dennis Murray.
I was totally taken back. He wished me well on my recovery and expressed his condollences since I won't be able to attend graduation. He also said that he'll be giving me a shout out in his speech! What a nice guy!!
That really made my morning!
Everything is going well, I'm still feeling great and the doctors are happy. I started coming down with a sinus "thing" earlier in the week, but since starting antibiotics it has resolved.
This entire week has been "Senior Week" at Marist. Essentially one week long party. I felt bad that my friends wouldn't be able to celebrate it with me, so I made a life-sized cardboard stand-up and sent it to them! Needless to say, completely inappropriate pictures will soon follow. :-)
Tomorrow will also be Marist's Commencement Ceremony. This year they'll be broadcasting it over the web, so my parents and I will be able to watch.
This morning I also got an unexpected surprise. At around 11 AM the phone rings. The caller ID says "Marist College." I'm wondering who it could be. Is it someone from the Music Department, someone from the school of computer science... no... It was President of Marist College, Dennis Murray.
I was totally taken back. He wished me well on my recovery and expressed his condollences since I won't be able to attend graduation. He also said that he'll be giving me a shout out in his speech! What a nice guy!!
That really made my morning!
Tuesday, May 06, 2008
All is well...
As the title states... all is well!
I'm looking good (when do I not?) and feeling good!
Yesterday I even went to the driving range! This time I didn't go crazy and I feel fine today.
All the scans came back and they look great, nothing there! The doctor is happy!
We got my first T Cell count back and the number is... zero.
No worries, it's what we expected. The count was only taken at 30 days out, and because of my age it will take a while for that number to come in.
Other then that I'm 2 take home finals and one 20 page paper away from graduation!
YIPPE! Time to get back to all that.
I'm looking good (when do I not?) and feeling good!
Yesterday I even went to the driving range! This time I didn't go crazy and I feel fine today.
All the scans came back and they look great, nothing there! The doctor is happy!
We got my first T Cell count back and the number is... zero.
No worries, it's what we expected. The count was only taken at 30 days out, and because of my age it will take a while for that number to come in.
Other then that I'm 2 take home finals and one 20 page paper away from graduation!
YIPPE! Time to get back to all that.
Sunday, April 27, 2008
Preventitve Maintenance...
I certainly have a busy week ahead of me.
Besides the remaining papers that need to be written, I have a few long days at Sloan.
Tuesday, I'll be at Sloan getting a medicine called Rituximab. It's a monoclonal antibody which is used to treat B-cell non-Hodgkin's lymphoma.
But Nick, I thought all the pre-transplant chemo and radiation got rid of your cancer?
That's a very good question! While we have no reason to think the cancer is back, this is being done as a preventative measure. This medicine specifically targets B-Cells (a type of white blood cell) and triggers the cell to die.
Why do we want to do that?
Because my cancer was a B-Cell cancer, the thought process is to suppress the B-Cells in my body for a little longer and allow the donor marrow to get stronger. The hope is that any of my body's own B-Cells that were left will be eliminated allowing only new donor B-Cells to grow.
We'll do this once ever other month... not sure for how long
On Tuesday, my doctor will also do our first T-Cell count!
It will only be 34 days out, but what the heck.
Thursday...
On Thursday we have my first set of scans since transplant. Hooray Hooray!
Busy week ahead, so in preparation it's time to get some sleep!
Besides the remaining papers that need to be written, I have a few long days at Sloan.
Tuesday, I'll be at Sloan getting a medicine called Rituximab. It's a monoclonal antibody which is used to treat B-cell non-Hodgkin's lymphoma.
But Nick, I thought all the pre-transplant chemo and radiation got rid of your cancer?
That's a very good question! While we have no reason to think the cancer is back, this is being done as a preventative measure. This medicine specifically targets B-Cells (a type of white blood cell) and triggers the cell to die.
Why do we want to do that?
Because my cancer was a B-Cell cancer, the thought process is to suppress the B-Cells in my body for a little longer and allow the donor marrow to get stronger. The hope is that any of my body's own B-Cells that were left will be eliminated allowing only new donor B-Cells to grow.
We'll do this once ever other month... not sure for how long
On Tuesday, my doctor will also do our first T-Cell count!
It will only be 34 days out, but what the heck.
Thursday...
On Thursday we have my first set of scans since transplant. Hooray Hooray!
Busy week ahead, so in preparation it's time to get some sleep!
Wednesday, April 23, 2008
I Love The Marist Music Department
So this past Sunday was the Spring Music Concert up at Marist.
I was floored when I heard they dedicated the concert to me!!
Here's a page from the program...
I was floored when I heard they dedicated the concert to me!!
Here's a page from the program...
(Click the image for a larger version)
Sunday, April 20, 2008
One week...
So I've been home for an entire week...
Things are getting better every day. A full night's rest every night for the past 6 nights has certainly helped. My appetite is certainly improving, however my taste is still lacking. Little by little!
Because of the beautiful weather I've been trying to go for walks, and Friday morning I hit the driving range. Being a bit too ambitious, I got myself a large bucket of balls... which ends up being 135 golf balls. Ya know, you don't realize how many 135 golf balls is until they're staring you in the face. I certainly bit off more then I could chew. Not realizing how much energy I didn't have, I had to take a break about every 10 balls. None the less, it was good to get out into the fresh air.
Yesterday morning when I woke up was a different story. Those golf balls did a number on me. My legs, back, side, shoulders, neck, and arms were KILLING me. Soooo sore. haha, serves me right. Next time perhaps a small bucket of balls. :-)
I'm also making a pretty good dent in my coursework and writing a paper as we speak. So before I get too distracted, let me get back to that.
Hasta la pasta!
Things are getting better every day. A full night's rest every night for the past 6 nights has certainly helped. My appetite is certainly improving, however my taste is still lacking. Little by little!
Because of the beautiful weather I've been trying to go for walks, and Friday morning I hit the driving range. Being a bit too ambitious, I got myself a large bucket of balls... which ends up being 135 golf balls. Ya know, you don't realize how many 135 golf balls is until they're staring you in the face. I certainly bit off more then I could chew. Not realizing how much energy I didn't have, I had to take a break about every 10 balls. None the less, it was good to get out into the fresh air.
Yesterday morning when I woke up was a different story. Those golf balls did a number on me. My legs, back, side, shoulders, neck, and arms were KILLING me. Soooo sore. haha, serves me right. Next time perhaps a small bucket of balls. :-)
I'm also making a pretty good dent in my coursework and writing a paper as we speak. So before I get too distracted, let me get back to that.
Hasta la pasta!
Monday, April 14, 2008
Home Sweet Home!!!
I'm writing this post to you from the comfort of my own home!!
That's right! at 18 days they let me out for good behavior!
It feels so good to here. My couch, my bed... my everything!
So what lies ahead?
I'll be returning to Sloan twice a week for checkups and such and trying to get back my energy. (This includes my appetite.) I also have a huge buttload of coursework I have to get done, after all I still plan to graduate!
My immune system is still weak, so now I'm only in a semi-quartine state. I can go for walks outside, but crowded public places are off limits. People can come visit, but only a few at a time and they gotta be super healthy. Things will remain this way for a while, at least until June when they recheck my immune system. Unfortunately, after puberty the immune system isn't able to reconstitute itself as quickly. These restrictions may very well last in september, perhaps later! But as my numbers improve (they check every 2 months) they'll lift restrictions.
Other then that I just want to thank everyone again for all their thoughts, prayers, support, and encourgament through this whole time. It's been such a blessing!!!
Till next time!
That's right! at 18 days they let me out for good behavior!
It feels so good to here. My couch, my bed... my everything!
So what lies ahead?
I'll be returning to Sloan twice a week for checkups and such and trying to get back my energy. (This includes my appetite.) I also have a huge buttload of coursework I have to get done, after all I still plan to graduate!
My immune system is still weak, so now I'm only in a semi-quartine state. I can go for walks outside, but crowded public places are off limits. People can come visit, but only a few at a time and they gotta be super healthy. Things will remain this way for a while, at least until June when they recheck my immune system. Unfortunately, after puberty the immune system isn't able to reconstitute itself as quickly. These restrictions may very well last in september, perhaps later! But as my numbers improve (they check every 2 months) they'll lift restrictions.
Other then that I just want to thank everyone again for all their thoughts, prayers, support, and encourgament through this whole time. It's been such a blessing!!!
Till next time!
Sunday, April 13, 2008
Tick Tock!!
Hey sports fans!
Everything here has been going great.
THEIR SENDING ME HOME TOMORROW!!
(knock on wood)
Today they've disconnected me from everything so I'm a free man!
I still don't have much of an appetite, and so I've been dropping weight. Doctor wants me to drink 3 liters of anything with substance (read: electrolytes) to try to offset the not eating.
Mom is bring me a few chicken cutlets from home today, maybe that will peek my interest!
Other then that, I've been feeling good! just generally tired. That's a combination of everything going on plus the not eating, but with time everything will return! Energy and Appetite.
It's funny, I've been here since March 27th. Looking back, that time has flew by! But knowing I'm going home tomorrow is making this weekend take forever! I'm so close!!!!
Everything here has been going great.
THEIR SENDING ME HOME TOMORROW!!
(knock on wood)
Today they've disconnected me from everything so I'm a free man!
I still don't have much of an appetite, and so I've been dropping weight. Doctor wants me to drink 3 liters of anything with substance (read: electrolytes) to try to offset the not eating.
Mom is bring me a few chicken cutlets from home today, maybe that will peek my interest!
Other then that, I've been feeling good! just generally tired. That's a combination of everything going on plus the not eating, but with time everything will return! Energy and Appetite.
It's funny, I've been here since March 27th. Looking back, that time has flew by! But knowing I'm going home tomorrow is making this weekend take forever! I'm so close!!!!
Thursday, April 10, 2008
Rough Night...
Hey all
Had a bit of a rough night last night. Spiked a small fever with a headache and some vomiting. But my fever didn't go above 38.5 C so the doctors aren't really worried.
Besides, the nurses tell me you can't go through transplant without spiking a fever at least once!
Other then that I've been feeling pretty exhausted and spent most of the day in bed. However over the past hour I've been feeling increasingly better and more lively. Feeling more normal :-)
While this energy lasts I thought I better update my adoring fans.
Have a great night!
Had a bit of a rough night last night. Spiked a small fever with a headache and some vomiting. But my fever didn't go above 38.5 C so the doctors aren't really worried.
Besides, the nurses tell me you can't go through transplant without spiking a fever at least once!
Other then that I've been feeling pretty exhausted and spent most of the day in bed. However over the past hour I've been feeling increasingly better and more lively. Feeling more normal :-)
While this energy lasts I thought I better update my adoring fans.
Have a great night!
Tuesday, April 08, 2008
There's a Great Big Beautiful Tomorrow
...Shining at the end of every day!
There's a great big beautiful tomorrow.
And tomorrow is just a dream away!
(That was for all my Disney fans out there)
So today was another good day!
We got the full dose of the IVIG without any reaction. (score!)
My doctor also started stepping me down on some meds and moving others to pill.
We are on quite a roll.
On another note, I've started to eat and drink more and more. Unfortunately I really can't taste anything. The mucositis has messed up my taste buds big time. Ya know how you feel when you drink coffee that's too hot? I essentially feel that numbness 24/7. No worries, normal taste will return within a few weeks.
All in all we're doing well!
Thankfully, I only have one more dose of benadryl scheduled for 8 o'clock tonight. So I thought I would use these few precious moments of lucidity to update my blog!
I just wanna thank everyone for all their encouragement and support through everything.
Your cards, your blood, and especially your prayers have really helped to ease these rough waters for me and my family!
There's a great big beautiful tomorrow.
And tomorrow is just a dream away!
(That was for all my Disney fans out there)
So today was another good day!
We got the full dose of the IVIG without any reaction. (score!)
My doctor also started stepping me down on some meds and moving others to pill.
We are on quite a roll.
On another note, I've started to eat and drink more and more. Unfortunately I really can't taste anything. The mucositis has messed up my taste buds big time. Ya know how you feel when you drink coffee that's too hot? I essentially feel that numbness 24/7. No worries, normal taste will return within a few weeks.
All in all we're doing well!
Thankfully, I only have one more dose of benadryl scheduled for 8 o'clock tonight. So I thought I would use these few precious moments of lucidity to update my blog!
I just wanna thank everyone for all their encouragement and support through everything.
Your cards, your blood, and especially your prayers have really helped to ease these rough waters for me and my family!
Monday, April 07, 2008
The Record...
Just a quick note...
I just saw the doctor and pleaded with her to let me out for good behavior :-)
She said her "record" to send someone home is 19 days post transplant.
Let's make or break that record!
In order for me to go home I have to be off all my antibiotics and pain meds, sustain these blood counts without any help, and most importantly be eating and drinking. As long as my counts stay on the right path we'll begin to peel away the antibiotics tomorrow.
I just saw the doctor and pleaded with her to let me out for good behavior :-)
She said her "record" to send someone home is 19 days post transplant.
Let's make or break that record!
In order for me to go home I have to be off all my antibiotics and pain meds, sustain these blood counts without any help, and most importantly be eating and drinking. As long as my counts stay on the right path we'll begin to peel away the antibiotics tomorrow.
We Have Lift Off!!!
BAM!!!!
Ladies and gentlemen... Today's Counts...
::drum roll:
White Blood Count - 7.1!!
Now that's what I'm talking about!
The rest of my counts are ok too!
Back to sleep for me. I can't wait for the doctor to do rounds this morning. Let's get me home!! :-)
Ladies and gentlemen... Today's Counts...
::drum roll:
White Blood Count - 7.1!!
Now that's what I'm talking about!
The rest of my counts are ok too!
Back to sleep for me. I can't wait for the doctor to do rounds this morning. Let's get me home!! :-)
Sunday, April 06, 2008
Houston, We have counts!
Hey everyone!
My counts are on the move!
My White blood count has moved from .4 to 2.5 today.
It may be a fair assessment to say I'll have some full strong counts in by Wednesday.
When I see the doctor tomorrow I'm gonna ask her what I need to do to get outta dodge!
In the mean time my 10AM dose of benedryl is telling me it's time for a nap.
Adios!
My counts are on the move!
My White blood count has moved from .4 to 2.5 today.
It may be a fair assessment to say I'll have some full strong counts in by Wednesday.
When I see the doctor tomorrow I'm gonna ask her what I need to do to get outta dodge!
In the mean time my 10AM dose of benedryl is telling me it's time for a nap.
Adios!
Saturday, April 05, 2008
Chugging Along...
Hey Everyone!
Today starts dose #3 of the ATG. It should be an uneventful day as I met the second dose with no problems or issues.
Now more important issues...
White Blood Count:
Thursday - 0.1
Friday - 0
Saturday - 0.4
See it!!! It's starting!! The numbers don't lie people! I also feel the marrow working. I've been on the GCSF medication and I'm feeling some bone pain in my lower back and legs. All signs point to new growing marrow!!
Today starts dose #3 of the ATG. It should be an uneventful day as I met the second dose with no problems or issues.
Now more important issues...
White Blood Count:
Thursday - 0.1
Friday - 0
Saturday - 0.4
See it!!! It's starting!! The numbers don't lie people! I also feel the marrow working. I've been on the GCSF medication and I'm feeling some bone pain in my lower back and legs. All signs point to new growing marrow!!
Thursday, April 03, 2008
Keep on Truckin...
Here we are, Thursday! So far so good.
Today I'm getting the second dose of ATG (Anti-thymocyte globulin.) This medication is used to prevent transplant rejection. Just like the IVIG from the other day, there is the possibility of having a reaction to this drug. So with this drug I'm not just premedicated with benedryl and tylneoyl, but also with celebrex and steroids. All those drugs do wonders... on Tuesday when i got the first dose, I only ran a small (100.4) fever, so they were able to finish giving me the dose without any problems.
For the second dose, their infusing the medicine a little slower which should prevent having any reaction at all. All in all I'll receive this medication four times. Every other day since Tuesday (Tuesday, Thursday, Saturday, Monday) Now, remember all those premeds I've been given to prevent against any reaction for this medication? Well, I actually receive the benedryl around the clock! Every 6 hours! They even continue the benedryl for 24 hours after the actual medicine finishes. So in other words, I have been and will be in a consistant benedryl comma until Tuesday.
It's amazing... 5 minutes after giving me the benedryl I can barely keep my eyes open. I'm finding this as a blessing in disguise. I've been having trouble sleeping and this pretty much keeps me napping for 18 hours a day.
Speaking of which, a new dose has just kicked in. So before I pass out onto my keyboard I must be off!
BUT BEFORE I GO...
We're starting to see some growth! Today I had a .1 white count. The doctor's say it will probably drop back down to zero tomorrow, but that means the process is starting. To further encourage my new marrow the doctors will start me on GCSF (Remember the medication to help encourage white cell growth) and continue that for next week.
Things are looking good people!
And now... Good night!
Today I'm getting the second dose of ATG (Anti-thymocyte globulin.) This medication is used to prevent transplant rejection. Just like the IVIG from the other day, there is the possibility of having a reaction to this drug. So with this drug I'm not just premedicated with benedryl and tylneoyl, but also with celebrex and steroids. All those drugs do wonders... on Tuesday when i got the first dose, I only ran a small (100.4) fever, so they were able to finish giving me the dose without any problems.
For the second dose, their infusing the medicine a little slower which should prevent having any reaction at all. All in all I'll receive this medication four times. Every other day since Tuesday (Tuesday, Thursday, Saturday, Monday) Now, remember all those premeds I've been given to prevent against any reaction for this medication? Well, I actually receive the benedryl around the clock! Every 6 hours! They even continue the benedryl for 24 hours after the actual medicine finishes. So in other words, I have been and will be in a consistant benedryl comma until Tuesday.
It's amazing... 5 minutes after giving me the benedryl I can barely keep my eyes open. I'm finding this as a blessing in disguise. I've been having trouble sleeping and this pretty much keeps me napping for 18 hours a day.
Speaking of which, a new dose has just kicked in. So before I pass out onto my keyboard I must be off!
BUT BEFORE I GO...
We're starting to see some growth! Today I had a .1 white count. The doctor's say it will probably drop back down to zero tomorrow, but that means the process is starting. To further encourage my new marrow the doctors will start me on GCSF (Remember the medication to help encourage white cell growth) and continue that for next week.
Things are looking good people!
And now... Good night!
Sunday, March 30, 2008
Bad Shrooms....
Nobody likes a bad trip! hehe
Today was a little more exciting then I would have liked.
On the road map to recovery, I receive different medications to help my body in this time of a compromised immune system. One of this is known as IVIG (intravenous immunoglobulin). Essentially its antibodies collected from over a thousand blood donors and given to me to help create a temporary passive immune system. Just like when i get blood transfusions, they give me tylenoyl and benadryl to help prevent against any reaction.
Unfortuantely today, that wasn't enough. The ivig is infused over 6 hours. At about 2 hours into it I started getting the chills and shaking VIOLENTLY! Some seriously crazy shaking. All the muscle spazisms also induced a little spout of vommiting as well. They gave me some adavin to stop the vommiting and steroids to reverse the reaction.
After the meds and another little nap, I'm back to normal! They'll try to give the medication again in about a week. But this time they'll premed me with more stuff and infuse the medication at a slower rate. Those combined should lower the chance of having that reaction!
So for now it's back to normal, and back to bed!
Today was a little more exciting then I would have liked.
On the road map to recovery, I receive different medications to help my body in this time of a compromised immune system. One of this is known as IVIG (intravenous immunoglobulin). Essentially its antibodies collected from over a thousand blood donors and given to me to help create a temporary passive immune system. Just like when i get blood transfusions, they give me tylenoyl and benadryl to help prevent against any reaction.
Unfortuantely today, that wasn't enough. The ivig is infused over 6 hours. At about 2 hours into it I started getting the chills and shaking VIOLENTLY! Some seriously crazy shaking. All the muscle spazisms also induced a little spout of vommiting as well. They gave me some adavin to stop the vommiting and steroids to reverse the reaction.
After the meds and another little nap, I'm back to normal! They'll try to give the medication again in about a week. But this time they'll premed me with more stuff and infuse the medication at a slower rate. Those combined should lower the chance of having that reaction!
So for now it's back to normal, and back to bed!
Saturday, March 29, 2008
Day 2
So It's Day 2. I'm hanging in there.
Mouth sores seeming to be getting a little worse, but not worries I'll ask for some pain meds.
Also, I'm dealing with some constant diarrhea. Not a lot of fun.
But hey! It could be worse, so I'm not complaining!
Keep on keepin on! :-)
Mouth sores seeming to be getting a little worse, but not worries I'll ask for some pain meds.
Also, I'm dealing with some constant diarrhea. Not a lot of fun.
But hey! It could be worse, so I'm not complaining!
Keep on keepin on! :-)
Thursday, March 27, 2008
Transplant Time!!!
Hooray! We did it! Transplant is finished!
Just as I mentioned before, it was quite uneventful.
Now we play the waiting game as the graph begins to come in.
Until then it'll be blood and platelet donations for me!
Just as I mentioned before, it was quite uneventful.
Now we play the waiting game as the graph begins to come in.
Until then it'll be blood and platelet donations for me!
Almost There...
So we're almost there!
Yesterday was not the funnest of days. My stomach was killing me, It was this pain that can only be described as extreme indigestion. Combine that with some cramping that you feel thorough your back and that about sums up my day. A little for vomiting, but as usualy, one spout of it and it disappears.
However, it was also time to move my central line. So I had a central line in the right side of my chest, giving the doctors access to three separate IV lines. Unfortunately, 1 line wasn't working and they had already tried "rewiring" the line last Monday. This meant a change of venue.
The placement of a new central line put its very "comfortably" in my femoral vein. For those less familiar with human anatomy, this places it nicely in my groin. Annoyingly close to all my "male parts" No worries though, this will only be temporary (2-3 weeks)
Today I woke up feeling more like myself. My stomach pain is subsiding with only a few pokes here and there to remind me it still exists. Just trying to relax until...
Transplant Today 6PM
Then it's just sitting back and recovering. So far so goo!
Yesterday was not the funnest of days. My stomach was killing me, It was this pain that can only be described as extreme indigestion. Combine that with some cramping that you feel thorough your back and that about sums up my day. A little for vomiting, but as usualy, one spout of it and it disappears.
However, it was also time to move my central line. So I had a central line in the right side of my chest, giving the doctors access to three separate IV lines. Unfortunately, 1 line wasn't working and they had already tried "rewiring" the line last Monday. This meant a change of venue.
The placement of a new central line put its very "comfortably" in my femoral vein. For those less familiar with human anatomy, this places it nicely in my groin. Annoyingly close to all my "male parts" No worries though, this will only be temporary (2-3 weeks)
Today I woke up feeling more like myself. My stomach pain is subsiding with only a few pokes here and there to remind me it still exists. Just trying to relax until...
Transplant Today 6PM
Then it's just sitting back and recovering. So far so goo!
Monday, March 24, 2008
A Long Week...
It's been quite the week at Sloan Memorial Hospital.
Tuesday started my radiation therapy. 3 times a day for 4 days. The radiation therapist was impressed. He said he had four TBI (Total Body Irradiation) cases this week, and I was fairing the best! He had 2 guys pass out, and another vomit. It seems like I got the trophy! With the radiation came some nausea but mostly I was just exhausted.
Saturday started the chemo regiment. However before they hung the chemo I had some surprise visitors! Eddie, Matt, and Dan came by before heading to the auto show. The Wozencroft's also came by to wish me well and donate platelets! If that wasn't enough, my friends from home Eric and Liz also came by! It was quite an action packed day.
It was all perfect timing because after they left I went into lockdown! :-)
In other words, with my counts dropping it was time to put me into isolation. Which essentially means anytime anyone comes in the room they need to wear a mask, gown, and gloves. This will minimize the chance for contracting any virus or bacteria while my counts are at Zero.
Anyways...
The chemo on Saturday and Sunday is pretty interesting. Apparently, the drug (Thiotepa) in high dose is excreated through the skin and could cause burns. So after the chemo finishes i have to take a shower. 1 hour after and 6 hours after. A little annoying, but a small price to pay :-)
Sunday, I'm not gonna lie. I felt like poop. Nauseous and tired all day. I didn't want to get outta bed at all. But unfortunately those two pesky showers I needed to take toke preceident.
That brings us to today...
Well I was feeling pretty good actually! But then in the middle of writing this post, out of nowhere, my stomach went sour and felt the need to evacuate. First time during treatment EVER! It wasn't that bad though. Mainly because I haven't eaten anything in three days. I just have no apetite. I've tried to eat some cereal, but after a few bites I just can't take anymore. The doctor isn't worried and has said it's par for the course.
What lies ahead?
Well more chemo tomorrow, and then Wednesday will be a day of rest.
Thursday we'll get our Bone Marrow!!!! Yippe!! And from there it's just recovery. :-)
However, I really do need to get back on the horse in regards to coursework. I'll get to that. Soon... I promise
Tuesday started my radiation therapy. 3 times a day for 4 days. The radiation therapist was impressed. He said he had four TBI (Total Body Irradiation) cases this week, and I was fairing the best! He had 2 guys pass out, and another vomit. It seems like I got the trophy! With the radiation came some nausea but mostly I was just exhausted.
Saturday started the chemo regiment. However before they hung the chemo I had some surprise visitors! Eddie, Matt, and Dan came by before heading to the auto show. The Wozencroft's also came by to wish me well and donate platelets! If that wasn't enough, my friends from home Eric and Liz also came by! It was quite an action packed day.
It was all perfect timing because after they left I went into lockdown! :-)
In other words, with my counts dropping it was time to put me into isolation. Which essentially means anytime anyone comes in the room they need to wear a mask, gown, and gloves. This will minimize the chance for contracting any virus or bacteria while my counts are at Zero.
Anyways...
The chemo on Saturday and Sunday is pretty interesting. Apparently, the drug (Thiotepa) in high dose is excreated through the skin and could cause burns. So after the chemo finishes i have to take a shower. 1 hour after and 6 hours after. A little annoying, but a small price to pay :-)
Sunday, I'm not gonna lie. I felt like poop. Nauseous and tired all day. I didn't want to get outta bed at all. But unfortunately those two pesky showers I needed to take toke preceident.
That brings us to today...
Well I was feeling pretty good actually! But then in the middle of writing this post, out of nowhere, my stomach went sour and felt the need to evacuate. First time during treatment EVER! It wasn't that bad though. Mainly because I haven't eaten anything in three days. I just have no apetite. I've tried to eat some cereal, but after a few bites I just can't take anymore. The doctor isn't worried and has said it's par for the course.
What lies ahead?
Well more chemo tomorrow, and then Wednesday will be a day of rest.
Thursday we'll get our Bone Marrow!!!! Yippe!! And from there it's just recovery. :-)
However, I really do need to get back on the horse in regards to coursework. I'll get to that. Soon... I promise
Wednesday, March 19, 2008
Dr. Acula.... Get it? :-)
As some of you may know, throughout the transplant process I will be unable to produce the many different types of blood cells that are needed for my body to function. This includes red cells, white cells, and platelets.
During this time I'll be receiving almost constant infusions of these blood products until my body is able to produce them on it's own. If you'd be interested in donating blood or platelets to help me out please check out the link below for more information.
Nick Romanelli Blood Donor Information
It's not just me that will benefit from your donation. Many (if not all) cancer patients will require blood during their treatment. If for whatever reason I am unable to use your donation, rest assured that you have helped someone else just like me!
During this time I'll be receiving almost constant infusions of these blood products until my body is able to produce them on it's own. If you'd be interested in donating blood or platelets to help me out please check out the link below for more information.
Nick Romanelli Blood Donor Information
It's not just me that will benefit from your donation. Many (if not all) cancer patients will require blood during their treatment. If for whatever reason I am unable to use your donation, rest assured that you have helped someone else just like me!
So far so good
Hello all!
As the title states, so far so good. We started radiation yesterday. Pretty much I stand 15 feet away from this giant machine as it roasts my insides. A recipe for a healthy nick includes roasting 5 minutes on each side 3 times a day for 4 days. So my last treatment will be Friday night.
The radiation is making me feel a little queezy, but more annoying then that is the intense dry mouth it gives me.
Stay tuned for more updates :-)
As the title states, so far so good. We started radiation yesterday. Pretty much I stand 15 feet away from this giant machine as it roasts my insides. A recipe for a healthy nick includes roasting 5 minutes on each side 3 times a day for 4 days. So my last treatment will be Friday night.
The radiation is making me feel a little queezy, but more annoying then that is the intense dry mouth it gives me.
Stay tuned for more updates :-)
Monday, March 17, 2008
And So It Begins...
Here we are... March 17th!
I'm currently hanging out at Sloan waiting to be admitted. The marathon begins now. Tomorrow starts 4 days of radiation, 4 days of chemo, 1 day of rest, and finally the marrow!
From there, it's more of an art then a science. We'll see how body responds and how quickly the marrow starts doing its thing!
As always, I'll keep everyone posted!
I also want to thank everyone for their support and encouragement as we start this new lengthy process. Hopefully our last one!!!
Take care
I'm currently hanging out at Sloan waiting to be admitted. The marathon begins now. Tomorrow starts 4 days of radiation, 4 days of chemo, 1 day of rest, and finally the marrow!
From there, it's more of an art then a science. We'll see how body responds and how quickly the marrow starts doing its thing!
As always, I'll keep everyone posted!
I also want to thank everyone for their support and encouragement as we start this new lengthy process. Hopefully our last one!!!
Take care
Wednesday, March 05, 2008
Down to the wire...
So It's March 5h and we're getting down to wire.
Next week will be filled with a myriad of tests and appointments to be sure I'm ready for the whole transplant process.
On March 17th I'll enter the hospital for the Bone Marrow Transplant!
The first four days will be filled with total body radiation, followed by more days of chemo, and then finally the bone marrow! From that point it will probably be about 3 weeks of recovery before I can continue recovering at home.
As for the bone marrow donor, I've been told their looking at one perfect 10 out of 10 match, and two 9 out of 10 matches. Couldn't ask for anything better
Keep ya posted!
Next week will be filled with a myriad of tests and appointments to be sure I'm ready for the whole transplant process.
On March 17th I'll enter the hospital for the Bone Marrow Transplant!
The first four days will be filled with total body radiation, followed by more days of chemo, and then finally the bone marrow! From that point it will probably be about 3 weeks of recovery before I can continue recovering at home.
As for the bone marrow donor, I've been told their looking at one perfect 10 out of 10 match, and two 9 out of 10 matches. Couldn't ask for anything better
Keep ya posted!
Wednesday, February 20, 2008
Good News!!
Good news everyone!
We had our first PET scan yesterday since we found out the cancer came back.
And praise God, everything in my liver, spleen, and spine are gone!
There is a little area of lymph nodes near my liver that are suspect, but my doctor thinks they may look the way they do from treatment. She's going to speak to the radiologist tomorrow to figure it all out.
All in all this is great news, and dependent upon what those lymph nodes are doing, we may be ready for transplant on March 10th!
Yippee!!!
We had our first PET scan yesterday since we found out the cancer came back.
And praise God, everything in my liver, spleen, and spine are gone!
There is a little area of lymph nodes near my liver that are suspect, but my doctor thinks they may look the way they do from treatment. She's going to speak to the radiologist tomorrow to figure it all out.
All in all this is great news, and dependent upon what those lymph nodes are doing, we may be ready for transplant on March 10th!
Yippee!!!
Saturday, February 09, 2008
Getting Closer...
Hello all, I hope this post finds everyone well!
Some nifty developments over the past 2 weeks.
Apparently, Marist has become a hot zone for the flu and other viral outbreaks over the past two weeks. Luckily, I was planning on traveling home anyways since I was scheduled to start chemo this past Tuesday.
Unfortunately I didn't travel home soon enough and caught whatever bug has been floating around campus. I came down with a nice low grade fever which awarded me the privilege to travel to Sloan on Saturday, Super bowl Sunday, and Monday to receive antibiotics.
I returned to Sloan to see my doctor on Tuesday and Wednesday only to learn that the virus had been playing with my immune system and causing my blood counts to drop. Which meant no chemo. Thankfully, they returned to decent enough levels by Thursday and I was able to start my 3 day cycle. However no good deed goes unpunished. While the clinic is only open on weekdays, I had to be admitted on Friday night so I could get my last day of chemo today. I was discharged around 2:30pm and I write this post from the comfort of my own home.
As for the virus, I came down with a low grade fever (sub 101) on Saturday which lasted until Monday morning. Since the fever broke I've been feeling great and the subsequent cough has been getting better each day.
Any news on transplant?
We're still not sure if we're going to do an auto (use my own marrow) or an alloe (an unrelated donor) for the transplant. While my marrow is clean, it may not be strong enough to support my immune system. Luckily we do have 10 potential donors to test if we decide to go that route.
Apparently there are teams of doctors having a meeting about me to decide the best course of action. This includes the type of transplant along with the type of chemotherapy and radiation I will receive right before the transplant. So I'll keep everyone posted as I learn more.
Whats the schedule look like?
As of right now here is what we're looking at...
Feb. 20th & 21st -- Full set of scans
Feb. 22nd -- Bone Marrow aspirations to double check that my marrow is free of cancer and to determine how strong it is to allow for me to be my own donor for transplant
If the scans are clean and we decide to use my own marrow then the schedule is as follows:
March 4th -- Harvest my own bone marrow. This is done the old fashioned way. I have to go under general anesthesia while they pull out all the bone marrow they need one teaspoon at a time.
March 10th -- Admitted to Sloan to start my 5 week transplant process.
If we decide to go with an unrelated donor, this schedule may get pushed back as we have to be able to test and then harvest from the best possible candidate. This could push my admittance date to the end of March.
So everything is on the up and up?
Not quite. This last little virus has got my doctor worried. As we get closer and closer to transplant it's important that I stay as healthy as possible. The slightest sickness could push back my transplant date. She wants me to transition out of school and remain home until we start the transplant. Needless to say I'm bummed. Granted it's only about 4 weeks sooner then I had initially planned, I'd much rather be at Marist with my friends (sorry Mom & Dad).
Luckily my professors for my on the ground classes are more then willing to work with me to help me complete my coursework on time.
Hopefully, depending on how I do in transplant I'll be able to walk at graduation this May. And if I can't... that just means I'll have to throw an extra kick ass graduation party when I can!
Some nifty developments over the past 2 weeks.
Apparently, Marist has become a hot zone for the flu and other viral outbreaks over the past two weeks. Luckily, I was planning on traveling home anyways since I was scheduled to start chemo this past Tuesday.
Unfortunately I didn't travel home soon enough and caught whatever bug has been floating around campus. I came down with a nice low grade fever which awarded me the privilege to travel to Sloan on Saturday, Super bowl Sunday, and Monday to receive antibiotics.
I returned to Sloan to see my doctor on Tuesday and Wednesday only to learn that the virus had been playing with my immune system and causing my blood counts to drop. Which meant no chemo. Thankfully, they returned to decent enough levels by Thursday and I was able to start my 3 day cycle. However no good deed goes unpunished. While the clinic is only open on weekdays, I had to be admitted on Friday night so I could get my last day of chemo today. I was discharged around 2:30pm and I write this post from the comfort of my own home.
As for the virus, I came down with a low grade fever (sub 101) on Saturday which lasted until Monday morning. Since the fever broke I've been feeling great and the subsequent cough has been getting better each day.
Any news on transplant?
We're still not sure if we're going to do an auto (use my own marrow) or an alloe (an unrelated donor) for the transplant. While my marrow is clean, it may not be strong enough to support my immune system. Luckily we do have 10 potential donors to test if we decide to go that route.
Apparently there are teams of doctors having a meeting about me to decide the best course of action. This includes the type of transplant along with the type of chemotherapy and radiation I will receive right before the transplant. So I'll keep everyone posted as I learn more.
Whats the schedule look like?
As of right now here is what we're looking at...
Feb. 20th & 21st -- Full set of scans
Feb. 22nd -- Bone Marrow aspirations to double check that my marrow is free of cancer and to determine how strong it is to allow for me to be my own donor for transplant
If the scans are clean and we decide to use my own marrow then the schedule is as follows:
March 4th -- Harvest my own bone marrow. This is done the old fashioned way. I have to go under general anesthesia while they pull out all the bone marrow they need one teaspoon at a time.
March 10th -- Admitted to Sloan to start my 5 week transplant process.
If we decide to go with an unrelated donor, this schedule may get pushed back as we have to be able to test and then harvest from the best possible candidate. This could push my admittance date to the end of March.
So everything is on the up and up?
Not quite. This last little virus has got my doctor worried. As we get closer and closer to transplant it's important that I stay as healthy as possible. The slightest sickness could push back my transplant date. She wants me to transition out of school and remain home until we start the transplant. Needless to say I'm bummed. Granted it's only about 4 weeks sooner then I had initially planned, I'd much rather be at Marist with my friends (sorry Mom & Dad).
Luckily my professors for my on the ground classes are more then willing to work with me to help me complete my coursework on time.
Hopefully, depending on how I do in transplant I'll be able to walk at graduation this May. And if I can't... that just means I'll have to throw an extra kick ass graduation party when I can!
Wednesday, January 30, 2008
Quick update
We got the results of the HLA Typing for the bone marrow transplant.
Unfortunately my sister is not a match. BUT we found 10 matches.
These 10 people match me in the 6 different antigens that they check when tissue typing. That means there is a good chance these 10 people could be a perfect match.
These donors will be notified and screened further to check their compatibility with a higher level of accuracy!
Hasta la pasta!
Unfortunately my sister is not a match. BUT we found 10 matches.
These 10 people match me in the 6 different antigens that they check when tissue typing. That means there is a good chance these 10 people could be a perfect match.
These donors will be notified and screened further to check their compatibility with a higher level of accuracy!
Hasta la pasta!
Tuesday, January 22, 2008
And We're Off....
Hello Hello!
So we started chemo last week. This time it's a different schedule with a different combination of medications. Now we just have 3 days of chemo , 18 days of rest, wash, rinse, repeat. So overall the schedule isn't terrible.
My Doctor told me to expect more fatigue this time around and I should also expect hair loss. Sounds like I'll be back to my "Mr. Clean" look. That should probably occur by the end of this week.
So what's down the road?
Here's the game plan...
2 cycles of chemo, then a round of scans.
If the scans come back clean, then it's on to the bone marrow transplant. If not, then we do another cycle of chemo and check again.
Ok, so what's the deal with the bone marrow transplant?
When the time comes, I'll have to enter the hospital for 4-5 weeks for my transplant. For the first 7 days, my body is bombarded by some industrial strength chemo. This stuff kills everything it finds... including my body's own marrow. That is why I need the transplant. Without it my body would be unable to produce red cells, white cells, or platelets. 14 days after that the marrow should then begin producing cells and I should be on the road to recovery.
We're still unsure that this point if we're going to use my own marrow (harvest it, freeze it, then give it back) or donor marrow. After extensive testing, my marrow has come back clean (no signs of cancer) so it is a viable option. However with donor marrow there is something that occurs called graft-versus-lymphoma. That is where the donor marrow sees the lymphoma in the body as foreign and fights it just as it would any other infection. So that's definitely a plus!
How am I feeling?
As for me, I'm doing ok... no worse for the wear. At first when we saw there was a possibility of the cancer returning I was pretty upset. I had got to a point where I thought this was all behind me, only to then learn we still have a ways to go. Now I'm doing ok. The way I see it, I had a one month vacation and now have to go back to my normal "routine."
I am worried about this semester though. I have two classes on campus and missing 5 weeks means almost a third of the semester. Not only that, I'm not sure when those 5 weeks will be. They could occur anytime between March & May. So I need to sit down with my professors and hopefully we can figure something out.
Even my online courses have me a little worried. They seem to include a large amount of groupwork for the semester, and I hope I can keep up my end. While my doctor said it's good to be optimistic during the transplant process, I have to realize there might be some days when getting out of bed and walking over to a chair takes all the energy I have.
Well, back to the grind!
Until next time!
So we started chemo last week. This time it's a different schedule with a different combination of medications. Now we just have 3 days of chemo , 18 days of rest, wash, rinse, repeat. So overall the schedule isn't terrible.
My Doctor told me to expect more fatigue this time around and I should also expect hair loss. Sounds like I'll be back to my "Mr. Clean" look. That should probably occur by the end of this week.
So what's down the road?
Here's the game plan...
2 cycles of chemo, then a round of scans.
If the scans come back clean, then it's on to the bone marrow transplant. If not, then we do another cycle of chemo and check again.
Ok, so what's the deal with the bone marrow transplant?
When the time comes, I'll have to enter the hospital for 4-5 weeks for my transplant. For the first 7 days, my body is bombarded by some industrial strength chemo. This stuff kills everything it finds... including my body's own marrow. That is why I need the transplant. Without it my body would be unable to produce red cells, white cells, or platelets. 14 days after that the marrow should then begin producing cells and I should be on the road to recovery.
We're still unsure that this point if we're going to use my own marrow (harvest it, freeze it, then give it back) or donor marrow. After extensive testing, my marrow has come back clean (no signs of cancer) so it is a viable option. However with donor marrow there is something that occurs called graft-versus-lymphoma. That is where the donor marrow sees the lymphoma in the body as foreign and fights it just as it would any other infection. So that's definitely a plus!
How am I feeling?
As for me, I'm doing ok... no worse for the wear. At first when we saw there was a possibility of the cancer returning I was pretty upset. I had got to a point where I thought this was all behind me, only to then learn we still have a ways to go. Now I'm doing ok. The way I see it, I had a one month vacation and now have to go back to my normal "routine."
I am worried about this semester though. I have two classes on campus and missing 5 weeks means almost a third of the semester. Not only that, I'm not sure when those 5 weeks will be. They could occur anytime between March & May. So I need to sit down with my professors and hopefully we can figure something out.
Even my online courses have me a little worried. They seem to include a large amount of groupwork for the semester, and I hope I can keep up my end. While my doctor said it's good to be optimistic during the transplant process, I have to realize there might be some days when getting out of bed and walking over to a chair takes all the energy I have.
Well, back to the grind!
Until next time!
Saturday, January 12, 2008
Round 2
Hello There!
Surgery went off without a hitch yesterday. They were able to do the biopsy laparoscopicly which means only small holes AND I get to go home tomorrow.
Unfortunately though the tissue is cancerous.
So what does that mean?
At first glance it seems to be the same lymphoma I've had. Apparently there is a chance that the cancer could morph into a different variant which would require different treatment. We still need to wait on the final report from the pathologist, but my doctor doesn't think this is the case.
With the lymphoma present it means back to chemotherapy.
Just like before, all of my treatments will be done outpatient through the clinic. However this time I will be getting a different combination of medications. The Chemo will last from 2-4 months. After which I'll get a bone marrow transplant that will keep me in the hospital for another month.
After all is said and done, we're looking at a 75% chance that the cancer won't ever come back.
As always, I'll keep you posted! :-)
Surgery went off without a hitch yesterday. They were able to do the biopsy laparoscopicly which means only small holes AND I get to go home tomorrow.
Unfortunately though the tissue is cancerous.
So what does that mean?
At first glance it seems to be the same lymphoma I've had. Apparently there is a chance that the cancer could morph into a different variant which would require different treatment. We still need to wait on the final report from the pathologist, but my doctor doesn't think this is the case.
With the lymphoma present it means back to chemotherapy.
Just like before, all of my treatments will be done outpatient through the clinic. However this time I will be getting a different combination of medications. The Chemo will last from 2-4 months. After which I'll get a bone marrow transplant that will keep me in the hospital for another month.
After all is said and done, we're looking at a 75% chance that the cancer won't ever come back.
As always, I'll keep you posted! :-)
Monday, January 07, 2008
Update...
Just like the first time, the biopsy is going to be done laparoscopicly and is scheduled for Friday.
That means we should know what's going on by the following Tuesday.
That means we should know what's going on by the following Tuesday.
Saturday, January 05, 2008
Well... not quite
Ok, so perhaps I was a little premature in my last post...
On my latest PET Scan (This Past Tuesday) there were a few new areas of interest about the size of Bee Bee's in my Liver and spleen.
These could either be the cancer returning, or a fungal infection.
Doctor wants to do a biopsy early next week to figure this all out.
I'll keep ya posted!
On my latest PET Scan (This Past Tuesday) there were a few new areas of interest about the size of Bee Bee's in my Liver and spleen.
These could either be the cancer returning, or a fungal infection.
Doctor wants to do a biopsy early next week to figure this all out.
I'll keep ya posted!
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