Day -6 was pretty much the same as day -7. The only difference was the main drug they gave me. Instead of the Rituxan, I was taking the rabbit ATG. So now instead of having my B cells ablated I now have my T cell ablated too. Two letters down, only twenty four left. Well, not quite. Tomorrow I will start the chemo regime for real and that is there to destroy all the white blood cells.
So today was very similar to yesterday. Apart for the main difference that I mentioned above, I had only two smaller difference. First, instead of just having 250mgs of solumedrol, I had 1000mgs. That is an insane amount of steroids to have floating around your system. Oh well I guess I will have to give up my dream of a call up to open the batting for the Australian cricket team as I'm sure that will raise a red flag with any international doping agency around the world. Just so you know, the human body naturally produces 7-10mgs of steroids per day, So I'm only 100 times above normal right now.
The second change is that the Rituxan was run over two hours, the ATG has been run over ten hours so currently, as I started at 2pm I am still having it infused. For any doctors that read this I'm having a hard time figuring out how the drug is derived and its actual mechanism of action. Maybe I'm stupid, maybe (and I hope) it's complicated, so if someone could explain it to me in layman's terms, I'd appreciate it. My cousin is an anaesthesiologist and I have a friend who is a chemist (you know who you are) so I'm sure someone can explain it to me.
Well day -5 should be interesting. I'll let you all know how it goes. Until then, stay well:)
Thursday, April 5, 2012
Sleep is over rated
The drugs you are given whilst going through the SCT aren't ever fun, but they are necessary. It seems that they give you a drug to do something and they they give you a drug to counter the side effects of that drug and then they give you a drug to contract the side effects of that drug etc.
What I found was that yesterday they gave me the Rituxan which was the active drug as part of my chemo arrangement. But just in case they gave me a large dose of Solumedrol, a steroid, some tylenol (paracetamol) and benedryl.
What I find is the benedryl makes me really sleepy so just after they have administered that I normally sleep anywhere from two to four hours. After then the sleepy effect of the benedryl has worn off the effects of the steroids kick in and from that point on I can't sleep. Yesterday I was not tired and I tried to sleep at about 10.00pm but to no avail.
Luckily Amy had written me up a sleeping pill so at about midnight I took that and then about 1.00am I finally got to sleep and I woke up around 7.00am with a brief interruption around 5.00am when the nurse came in to check my vitals (and yes I did have a heart beat) and to my surprise I did sleep afterwards.
The thing I find is that hospitals are boring at the best of times. They are even more boring when you're stuck in a cycle of sleeplessness at 2 o'clock in the morning. If I can't get to sleep in about 15 minutes, I will busy myself with a DVD or book or something for an hour or two. If I still can't sleep I'll ask the nurse if I can have something and if I still can't sleep I'll continue to occupy myself with a DVD or something.
The night before my brain surgery I couldn't sleep, probably because of the anxiety after not one but two sleep pills I still couldn't sleep until about 4.00am! They then woke me at 6.00am to prep me for surgery. Sometimes it doesn't matter what you do, yo just can't sleep. Until next time, stay well:)
What I found was that yesterday they gave me the Rituxan which was the active drug as part of my chemo arrangement. But just in case they gave me a large dose of Solumedrol, a steroid, some tylenol (paracetamol) and benedryl.
What I find is the benedryl makes me really sleepy so just after they have administered that I normally sleep anywhere from two to four hours. After then the sleepy effect of the benedryl has worn off the effects of the steroids kick in and from that point on I can't sleep. Yesterday I was not tired and I tried to sleep at about 10.00pm but to no avail.
Luckily Amy had written me up a sleeping pill so at about midnight I took that and then about 1.00am I finally got to sleep and I woke up around 7.00am with a brief interruption around 5.00am when the nurse came in to check my vitals (and yes I did have a heart beat) and to my surprise I did sleep afterwards.
The thing I find is that hospitals are boring at the best of times. They are even more boring when you're stuck in a cycle of sleeplessness at 2 o'clock in the morning. If I can't get to sleep in about 15 minutes, I will busy myself with a DVD or book or something for an hour or two. If I still can't sleep I'll ask the nurse if I can have something and if I still can't sleep I'll continue to occupy myself with a DVD or something.
The night before my brain surgery I couldn't sleep, probably because of the anxiety after not one but two sleep pills I still couldn't sleep until about 4.00am! They then woke me at 6.00am to prep me for surgery. Sometimes it doesn't matter what you do, yo just can't sleep. Until next time, stay well:)
Chemo Bald
I don't mind being bald. I am in good company:)
So now, don't make fun of me or Vin Diesel will kick your ass! Stay well:)
Wednesday, April 4, 2012
Day -7
You know, when I come to hospital I like to hope for the best but expect the worst. So for the last 24 hours I have been trying to stay positive but at the same time I have been trying to steel my mind for any nasty surprises. Fortunately, so far it has been a breeze but it is only my first day and I'm sure that things will get harder as time goes by.
So why was today easier than expected? Well to start with the PICC line catheter was 100 times more comfortable than the central line catheter that I had for the harvest. This will hopefully be a benefit that will remain for the whole two and a half weeks, and I must admit that I can't see any reason why this wouldn't be the case.
The second reason is that I didn't actually start the chemo today. The protocol changes slightly for every patient, but I am not actually going to do any chemo until Thursday or day -5. Today all I had was a dose of rituxan. Rituxan is used to target B cells which are one of the five types of white blood cells or lymphocytes in the blood. They didn't expect any side effects, and none were realised. Well no side effects anyway, but I do think I am out of the woods now. Tomorrow, there is no chemo again and no Rituxan either. Instead I will have rabbit ATG, which is used to target the T cells, another lymphocyte, in a similar way to how Rituxan attacks the B cells.
Another plus is I have a much better room than I had for mobilisation. The best rooms with nicest view are east facing over the lake. My room is north facing, but is probably the second best view and I have two big windows as opposed to one small window. However, the room is slightly smaller, but this doesn't bother me at all. I will get some video for you tomorrow. Until then, stay well:)
So why was today easier than expected? Well to start with the PICC line catheter was 100 times more comfortable than the central line catheter that I had for the harvest. This will hopefully be a benefit that will remain for the whole two and a half weeks, and I must admit that I can't see any reason why this wouldn't be the case.
The second reason is that I didn't actually start the chemo today. The protocol changes slightly for every patient, but I am not actually going to do any chemo until Thursday or day -5. Today all I had was a dose of rituxan. Rituxan is used to target B cells which are one of the five types of white blood cells or lymphocytes in the blood. They didn't expect any side effects, and none were realised. Well no side effects anyway, but I do think I am out of the woods now. Tomorrow, there is no chemo again and no Rituxan either. Instead I will have rabbit ATG, which is used to target the T cells, another lymphocyte, in a similar way to how Rituxan attacks the B cells.
Another plus is I have a much better room than I had for mobilisation. The best rooms with nicest view are east facing over the lake. My room is north facing, but is probably the second best view and I have two big windows as opposed to one small window. However, the room is slightly smaller, but this doesn't bother me at all. I will get some video for you tomorrow. Until then, stay well:)
Tuesday, April 3, 2012
Udvar-Hazy
Arguably you could say that this is the other half of the Air and Space Museum. It has a bucket load of all things aeronautic and astronautic so I was in heaven. THe main difference between this campus and the one in DC is that this one was mainly just showing off the aircraft. The DC campus had more interactive displays and was concerned with more than just aircraft. For example, they had an exhibit dedicated to astronomy.
I had to say that in the morning I wasn't planning on going. Even though I wanted to go my friend did not share my passion so I thought it fair that we go somewhere we would both enjoy. However, her husband also really wanted to go so I put my less selfish side aside and decided to head off to Dulles Airport which was a great decision as Mr Ronald "Reagan" Sigworth was a former senior engineer for Pratt and Whitney so I had my own resident expert of aeroplane engines. You can all share in his wisdom as he gave a little speech on the SR71. Here is the video, please enjoy. Stay well:)
I had to say that in the morning I wasn't planning on going. Even though I wanted to go my friend did not share my passion so I thought it fair that we go somewhere we would both enjoy. However, her husband also really wanted to go so I put my less selfish side aside and decided to head off to Dulles Airport which was a great decision as Mr Ronald "Reagan" Sigworth was a former senior engineer for Pratt and Whitney so I had my own resident expert of aeroplane engines. You can all share in his wisdom as he gave a little speech on the SR71. Here is the video, please enjoy. Stay well:)
DC
As I told you this morning, and as you probably figured from the video I took at the air and space museum, I have been in Washington DC for the last three days. I went there and stayed with a dear friend and her family and we had a great time. It was great to get away. Being away from Chicago and in the company of friends was extremely refreshing. I was able to forget about the stresses of the medical trial and take some time to see some really cool stuff while I was there.
The first day I awoke late in the English basement because the bed was so comfortable and the lack of windows kept the room super dark, the two vital ingredients for waking up late. I won't bore you with chronicling my trip to the Air and Space museum so I will just move on to day two.
Again I woke late, and by the time we had all got ourselves ready and my friend had got her two kids ready, our breakfast outing had turned from brunch and finally into lunch. Since through genuine procrastination and laziness on my part it was time to go see some stuff. And wow, is there some stuff to see! DC has the best museums in the world, and also the best monuments too.
That day I decided it was time to see the monuments. When I was in DC 10 years ago with my wife we saw the Vietnam and Korean memorials, Roosevelt and Lincoln memorials, the Washington monument and Arlington cemetery. So we started at the WWII memorial. Amazingly enough, they only built it two years ago and was constructed due to the dedication of Bob Dole and Tom Hanks who were ashamed that Washington did not have a memorial for the fallen of WWII.
Personally, even as a half Australian half Brit, I was genuinely moved by the memorial. My grandfather fought in the war in the Pacific and for much of that he was fighting alongside Americans. He was the first Australian to win the Distinguished Flying Cross so I have to say I was genuinely moved by the memorial. Here are some pictures I took:-
After the WWII memorial we went to the Jefferson memorial, which was huge. I have to say, I'm not American so maybe I don't understand, but the Jefferson memorial is bigger than the WWI, WWII, Vietnam and Korean memorials put together. I understand that Jefferson was instrumental in building the foundations of the USA, but is his life worth more than the thousands that died for their country? Honestly, I cannot answer that question as I'm not American, but it is merely a discussion point.
I will, talk about the Udvar Hazy Air and Space Museum tomorrow. Until next time, stay well:)
The first day I awoke late in the English basement because the bed was so comfortable and the lack of windows kept the room super dark, the two vital ingredients for waking up late. I won't bore you with chronicling my trip to the Air and Space museum so I will just move on to day two.
Again I woke late, and by the time we had all got ourselves ready and my friend had got her two kids ready, our breakfast outing had turned from brunch and finally into lunch. Since through genuine procrastination and laziness on my part it was time to go see some stuff. And wow, is there some stuff to see! DC has the best museums in the world, and also the best monuments too.
That day I decided it was time to see the monuments. When I was in DC 10 years ago with my wife we saw the Vietnam and Korean memorials, Roosevelt and Lincoln memorials, the Washington monument and Arlington cemetery. So we started at the WWII memorial. Amazingly enough, they only built it two years ago and was constructed due to the dedication of Bob Dole and Tom Hanks who were ashamed that Washington did not have a memorial for the fallen of WWII.
Personally, even as a half Australian half Brit, I was genuinely moved by the memorial. My grandfather fought in the war in the Pacific and for much of that he was fighting alongside Americans. He was the first Australian to win the Distinguished Flying Cross so I have to say I was genuinely moved by the memorial. Here are some pictures I took:-
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| The Front |
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| The fountain |
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| All 50 states are represented by pillars like this. I took a picture of Illinois as this is where I have spent most of my time. |
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| Something for the overseas allies |
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| I took a picture of Kansas as the friend I was staying with was originally from there. |
I will, talk about the Udvar Hazy Air and Space Museum tomorrow. Until next time, stay well:)
Countdown
In just over three hours I'll be headed off to the hospital to for my PICC line placement. It is funny how quickly it comes around. It only seems like the other day I was sitting in the blood centre, watching Ferris Beuler and having my stem cells harvested. It has been over two weeks since then and now I am on the eve of my first day chemotherapy and only eight days away from my transplant.
I am excited about it because this is the first time I have really been in a position where I can reverse the progression of this ugly disease. I am also dreading it because four days of chemotherapy and a huge cocktail of other drugs I am sure that I will feel awful. Lastly, I am worried. Not so much worried that something will go wrong. I actually feel very strong and very well prepared so I don't think anything will go wrong. I am worried it will not work and I have put myself through this whole ordeal, removing myself from my family for two months and risking my life for nothing.
Hopefully the PICC line placement will be more comfortable than the central line catheter placement, but it will be what it will be. Right now I need to get an hours sleep as I just flew back from DC after spending a wonderful weekend in the capital with an old friend and her family. But I will tell you about that later. Until then, stay well:)
I am excited about it because this is the first time I have really been in a position where I can reverse the progression of this ugly disease. I am also dreading it because four days of chemotherapy and a huge cocktail of other drugs I am sure that I will feel awful. Lastly, I am worried. Not so much worried that something will go wrong. I actually feel very strong and very well prepared so I don't think anything will go wrong. I am worried it will not work and I have put myself through this whole ordeal, removing myself from my family for two months and risking my life for nothing.
Hopefully the PICC line placement will be more comfortable than the central line catheter placement, but it will be what it will be. Right now I need to get an hours sleep as I just flew back from DC after spending a wonderful weekend in the capital with an old friend and her family. But I will tell you about that later. Until then, stay well:)
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