First of all, I want to wish you all a Happy and Blessed Easter tomorrow. It is certainly not a day to be missed at church but I'll have to. Isn't it a well known Jewish saying, "Next year - do it all"? And that's what it's all about(sounds like the Hokey Pokey)! The gift of Easter is what has helped to sustain me throughout this entire journey. I have been prepared for any eventuality!
But, I do have the added advantage that my wife is Greek and we celebrate Greek Easter as well with her side of the family. This year Greek Easter is next Sunday. So even though my wife will go to my sister-in-law's tomorrow, we'll have Greek Easter here. So, I will get a chance to see the family on that day and enjoy a traditional lamb Easter dinner. It's a treat that is not to be missed!
As for today, I did do 2 more windows. Only stopping because it was a little chilly outside and I have plenty of time to do the others. They are forecasting 70 degrees for next Saturday so Spring weather may actually be on the horizon and it certainly would be ideal to do windows!
Once again, there is no change in my condition. I know that it's boring, but I am so blessed that it remains that way.
I would also be remiss if I did not thank all of you who continue to send cards. The messages are touching and greatly appreciated and always provide an uplift. It is very humbling to know that so many people are still thinking about me even though I have been out of touch with the real world for over 5 months now.
Again, thank you all for your thoughts and prayers...
Bob
April 10, 2009 11:15 PM 48 days to go
It was certainly a lovely Spring day today and I took advantage of it by washing some windows! You don't realize how "out of shape" you are until you start to do a little honest to goodness work! After only a few windows, I was getting somewhat tired. So I called it quits, leaving myself with the remainder of the job to do in the days to come. There, obviously, is no hurry - I've got plenty of time. So it looks it it's going to take awhile to build up me strength once I get the OK to resume my normal lifestyle. I'll just have to go easy on the marathons, the bike racing, and the iron man competitions. It'll be tough, but I think that I am up to it.
There was no walk today, but there will be plenty of opportunities in the days to come.
It's Good Friday and Holy Week comes to it's dramatic conclusion in 2 days. About the only thing that I could do in observance of the day was to not eat meat. I won't miss tomorrow night's Easter Eve service because it focuses on the fact that Jesus is risen. The justification for this is that the service takes place after sundown so that, technically, the day is done and it is now OK to do this as it is the "third day" after the crucifiction. To me, that third day is actually Easter Sunday. But there are others who consider the service the most beautiful one of the year. So, to each his own, I guess. That's what makes the world go 'round.
As you might assume, I am doing very well as usual.
Just waiting for the count to complete...
Bob
There was no walk today, but there will be plenty of opportunities in the days to come.
It's Good Friday and Holy Week comes to it's dramatic conclusion in 2 days. About the only thing that I could do in observance of the day was to not eat meat. I won't miss tomorrow night's Easter Eve service because it focuses on the fact that Jesus is risen. The justification for this is that the service takes place after sundown so that, technically, the day is done and it is now OK to do this as it is the "third day" after the crucifiction. To me, that third day is actually Easter Sunday. But there are others who consider the service the most beautiful one of the year. So, to each his own, I guess. That's what makes the world go 'round.
As you might assume, I am doing very well as usual.
Just waiting for the count to complete...
Bob
April 9, 2009 10:55 PM 49 days to go
Another day with no problems.
The weather was very Springlike temperaturewise but a little windy. It did not deter us from going for a walk. Now that the sun is getting stronger and stronger, I have to be careful about getting too much sun and a sunburn. Unfortunately, my medication makes me more susceptable to the sun's rays. Usually, I don't have to worry about that. But, this year I'll have to be much more conscious of my outdoor activities.
Tonight is Maundy Thursday and I really missed going to church. This whole weekend is going to be tough in that regard because it is the essence as to why I am a Christian. Because of Easter Day, when I got the news that I was diagnosed with leukemia, I was not concerned about my mortal life. I know that that may be hard for some of you to believe, but it is the truth. This is why we are Christians. Our faith in God and the will of God sustains us each day no matter what we have to undertake or undergo. If we cannot commit ourselves to that, then we should not call ourselves Christians.
As you all know, I am not out of the woods here, but I am still unconcerned about my future regarding this disease. I know that it's now easier to have that feeling when things are going so well for me. But, that was most certainly not the case in the beginning when I was given about a 30% chance. Even less of a chance, depending on what website you looked at.
It's really quite funny, when I sat down here to craft today's entry, I had no idea what I was going to say because it was one of the most uneventful days that I have undergone. And yet, all of a sudden, the entry morphed into a discussion about my most inner feelings as to why I harbor the attitude that I do about the battle that I am now undergoing. God most certainly works in strange ways.
For sure, I'll have much to celebrate at next year's Easter...
Bob
The weather was very Springlike temperaturewise but a little windy. It did not deter us from going for a walk. Now that the sun is getting stronger and stronger, I have to be careful about getting too much sun and a sunburn. Unfortunately, my medication makes me more susceptable to the sun's rays. Usually, I don't have to worry about that. But, this year I'll have to be much more conscious of my outdoor activities.
Tonight is Maundy Thursday and I really missed going to church. This whole weekend is going to be tough in that regard because it is the essence as to why I am a Christian. Because of Easter Day, when I got the news that I was diagnosed with leukemia, I was not concerned about my mortal life. I know that that may be hard for some of you to believe, but it is the truth. This is why we are Christians. Our faith in God and the will of God sustains us each day no matter what we have to undertake or undergo. If we cannot commit ourselves to that, then we should not call ourselves Christians.
As you all know, I am not out of the woods here, but I am still unconcerned about my future regarding this disease. I know that it's now easier to have that feeling when things are going so well for me. But, that was most certainly not the case in the beginning when I was given about a 30% chance. Even less of a chance, depending on what website you looked at.
It's really quite funny, when I sat down here to craft today's entry, I had no idea what I was going to say because it was one of the most uneventful days that I have undergone. And yet, all of a sudden, the entry morphed into a discussion about my most inner feelings as to why I harbor the attitude that I do about the battle that I am now undergoing. God most certainly works in strange ways.
For sure, I'll have much to celebrate at next year's Easter...
Bob
April 8, 2009 10:10 PM 50 days to go
How about that! As the song goes, I'm "halfway to paradise". However, paradise doesn't measure up to what most of us would consider it to be. I asked the doctor what the changes would be after the 100 days are over and he said that they were dietary only. So, ordering out, fresh fruits and vegetables, etc. will once again be on the menu. But, no restaraunts, shopping malls, church, Red Sox games, etc. will be allowed. Crowds will still be verboten. As the doctor said, it is "only" 10 more months.
The other change after the 100 days is that my trips to Dana-Farber will cease to be weekly and will then become monthly. At that point, I plan to have my Hickman catheter removed so that I will then have to be stabbed each time that I go to the clinic and have my blood drawn.
As expected, my counts were once again "on the money". Everything is going great! I even lost about 2 pounds of totally unneeded fat. This puts me down about about 15 pounds from I started this whole process. Not bad, when I am eating and drinking everything that I want - minus the food restrictions and alcohol.
About a month from now they will be doing another chimera test to see how things have changed from the first one that was taken 3 weeks ago. After that, they plan to start weaning me off the immunosuppressants looking for a little bit of graft to host disease.
The best part of the day was the fact that we got to the clinic just before 7:00 this morning and everything went like clockwork so that we finished seeing the doctor about 7:45. We got back home at 9:00. Never have we been able to pull this one off before. Hopefully it augurs well for the remaining early appointments that we have.
So, it has been a good day on many fronts.
But that 10 months looms as quite a challenge...
Bob
The other change after the 100 days is that my trips to Dana-Farber will cease to be weekly and will then become monthly. At that point, I plan to have my Hickman catheter removed so that I will then have to be stabbed each time that I go to the clinic and have my blood drawn.
As expected, my counts were once again "on the money". Everything is going great! I even lost about 2 pounds of totally unneeded fat. This puts me down about about 15 pounds from I started this whole process. Not bad, when I am eating and drinking everything that I want - minus the food restrictions and alcohol.
About a month from now they will be doing another chimera test to see how things have changed from the first one that was taken 3 weeks ago. After that, they plan to start weaning me off the immunosuppressants looking for a little bit of graft to host disease.
The best part of the day was the fact that we got to the clinic just before 7:00 this morning and everything went like clockwork so that we finished seeing the doctor about 7:45. We got back home at 9:00. Never have we been able to pull this one off before. Hopefully it augurs well for the remaining early appointments that we have.
So, it has been a good day on many fronts.
But that 10 months looms as quite a challenge...
Bob
April 7, 2009 10:45 PM 51 days to go
You know, I admit that I do grouse about the "inefficiencies" of the various institutions that we have to deal with in order to keep all aspects of my recovery on track - insurance companies, medical companies, prescription companies, etc. But, when you put it all in perspective, if it were not for all the advances of modern medicine - I would not even be here! I suppose that contributes to some of my frustrations because each day is now a gift that has been given to me - though I don't know why at this point! And yet, I am a virtual prisoner in my own home - not being able to do much of anything with these new found days.
I suppose that I should "suck it up" so to speak and simply be patient until my recovery period is complete. It does require an awful lot of patience, however, when we are looking at an early 2010 timeframe.
Tomorrow is my weekly visit to Dana-Farber with an early(7 AM) appointment that is inconvenient in one way(because of the early time) but is more than offset by the fact that they have had no opportunity to start backlogging patients and the time at the clinic is greatly minimized. Since tomorrow will be the half way point to the 100 days, I'm going to ask the doctor to give me an early read on what current restrictions are relaxed at that point. At this point, other than the dietary items, I don't have much else to go on.
As you might expect, I am still feeling fine. No sign of graft vs host disease or any other side effects from any of my medications. I have been truly blessed all the way along - something that not very many people have been fortunate enough to experience.
So, tomorrow will be a "meat" day once again. I look forward to it...
Bob
I suppose that I should "suck it up" so to speak and simply be patient until my recovery period is complete. It does require an awful lot of patience, however, when we are looking at an early 2010 timeframe.
Tomorrow is my weekly visit to Dana-Farber with an early(7 AM) appointment that is inconvenient in one way(because of the early time) but is more than offset by the fact that they have had no opportunity to start backlogging patients and the time at the clinic is greatly minimized. Since tomorrow will be the half way point to the 100 days, I'm going to ask the doctor to give me an early read on what current restrictions are relaxed at that point. At this point, other than the dietary items, I don't have much else to go on.
As you might expect, I am still feeling fine. No sign of graft vs host disease or any other side effects from any of my medications. I have been truly blessed all the way along - something that not very many people have been fortunate enough to experience.
So, tomorrow will be a "meat" day once again. I look forward to it...
Bob
April 6, 2009 10:20 PM 52 days to go
Well, the battle was joined and these outfits never cease to amaze me! When I called my internet prescription provider and mentioned that my prescription that was requested on March 18th now had my doctor's authorization as they required, they stated that the authorization was obtained after the prescription was written so that it was now null and void! I would need to get another one! When I called them last Friday, no one mentioned that this was the case. They stated that they "would take care of it".
Likewise, they stated that I am only allowed to obtain a maximum of a 60 day supply from my local pharmacy. Thus, since I have already refilled my 30 day supply once, I no longer have the local pharmacy option available. So they nicely position you between a rock and a hard place! It's not a big deal to get the prescription rewritten, but you never get a straight story and they don't tell you the rules of the game at the beginning. The just tell you the rules that you have violated as the game plays out. And they say that they are recording their phone calls so as to provide "the highest quality service". What a joke!
Did I win the battle? Probably not - but I do live to fight another day.
Other than that, my day went fine and I feel the same way too. Wednesday is coming up and I'll get an update as to where I stand at that time - but I foresee nothing of any substance occurring other than to confirm that I am still proceeding apace.
So, there is not much else to say for the day...
Bob
Likewise, they stated that I am only allowed to obtain a maximum of a 60 day supply from my local pharmacy. Thus, since I have already refilled my 30 day supply once, I no longer have the local pharmacy option available. So they nicely position you between a rock and a hard place! It's not a big deal to get the prescription rewritten, but you never get a straight story and they don't tell you the rules of the game at the beginning. The just tell you the rules that you have violated as the game plays out. And they say that they are recording their phone calls so as to provide "the highest quality service". What a joke!
Did I win the battle? Probably not - but I do live to fight another day.
Other than that, my day went fine and I feel the same way too. Wednesday is coming up and I'll get an update as to where I stand at that time - but I foresee nothing of any substance occurring other than to confirm that I am still proceeding apace.
So, there is not much else to say for the day...
Bob
April 5, 2009 11:55 PM 53 days to go
Ahhh, my favorite day of the year - the opening of the baseball season! Watching Red Sox games will offer a pleasant change from the same old TV programming that seems to jam up most of the channels. As the song goes, "57 channels and nothing on!" Plus, I have the added bonus of being able to watch all the day games as well - I am so lucky! Unfortunately, the forecast is for heavy rain tomorrow and the game will most likely be postponed until Tuesday.
As you can probably surmise, with my mind on the opening of the baseball season, I am still doing fine and I really have nothing else to concern myself with other than this diversion.
We did go for a walk today - a little brisk and windy but the sun was out and getting the exercise is always good.
Once again my sister-in-law and brother-in-law came for a visit and we had a wonderful veal piccata dinner.
It was a good day in many respects. But, it was also the start of Holy Week and I missed the Palm Sunday church service for the first time in I don't know how many years. This is also the week that the choir puts in its most intensive effort of the year singing today, rehearsing tomorrow, then singing Thursday, Friday, Saturday, and Sunday. I am really going to miss all of that. Hopefully, they will miss me as well. By the time I get back on my feet I wonder how many people will still remember me!
Tomorrow, I get to do battle with the prescription service once again so that should occupy a chunk of my day and probably give me a sleepness night tonight! It's just so much fun dealing with them!
So, all in all, it was a bittersweet day. But another day closer to the 100 day goal. As we were talking today, as the goal nears, I'll have to seek clarification from the doctor as to what it really means as it relates to my everyday living.
That's about it for now. I'll let you know who wins tomorrow's battle...
Bob
As you can probably surmise, with my mind on the opening of the baseball season, I am still doing fine and I really have nothing else to concern myself with other than this diversion.
We did go for a walk today - a little brisk and windy but the sun was out and getting the exercise is always good.
Once again my sister-in-law and brother-in-law came for a visit and we had a wonderful veal piccata dinner.
It was a good day in many respects. But, it was also the start of Holy Week and I missed the Palm Sunday church service for the first time in I don't know how many years. This is also the week that the choir puts in its most intensive effort of the year singing today, rehearsing tomorrow, then singing Thursday, Friday, Saturday, and Sunday. I am really going to miss all of that. Hopefully, they will miss me as well. By the time I get back on my feet I wonder how many people will still remember me!
Tomorrow, I get to do battle with the prescription service once again so that should occupy a chunk of my day and probably give me a sleepness night tonight! It's just so much fun dealing with them!
So, all in all, it was a bittersweet day. But another day closer to the 100 day goal. As we were talking today, as the goal nears, I'll have to seek clarification from the doctor as to what it really means as it relates to my everyday living.
That's about it for now. I'll let you know who wins tomorrow's battle...
Bob
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