Good evening all:
The kids are enjoying a late night of movie watching and I figured now was about as good of a time as any to send out a quick update. The past week went much more smoothly than last--thank goodness. I still need transfusions about every other day, but I was able to have 'off' on Tuesday and Thursday. To celebrate I worked 8 hours from home both days!
I've started to get a little more brazen when it comes to my son's baseball team. The parents are having fun watching me have difficulty staying away during the games. I gave in and actuallly participated in practice on Thursday evening. This is happening with the blessing from the care team at Hopkins (or at least they haven't openly condemned it). Being able to participate in some way makes all the difference.
Of course there is peril in all this--I have no white blood cells and, if Monday's bone marrow biopsy is any indication, I actually don't have much in the way of marrow still. No one on the care team seems terribly concerned and so I suppose they are simply looking at my body's willingness to be a blank canvas as a positive sign for the success of the bone marrow transplant (or at least that is how I like to look at it). You should see me approach one my 9-year old players to give them a high five for an inspired pitching performance and make them stop about 10 feet away and answer whether or not they have a cold.
I'm sure that everyone is getting a little bored of the update posts. I promise that I have something a little more 'substantial' brewing in my head. For those who are paying attention, you'll be happy to hear that I am not talking about the minor sinus infection that had the doctors a little worried a bit ago. I'm talking about an observation that I have made over time that I've been wanting to describe. Perhaps tomorrow there will be time to type it out.
As always, thanks for reading.
--Russ.
Friday, April 30, 2010
Friday, April 23, 2010
Type and (double) Cross
Good afternoon all:
Just writing while getting the last of what has seemed to be an endless stream of transfusions. The platelets and red blood cells continue to dip and I alternately make and lose white blood cells. I still have no immune system to speak of, so the risk of infection continues for me.
I have been able to get to Nolan's baseball games which has been fun. I even found a way to position myself at one of the fields so as to be away from everyone and still in a prime spot to 'coach'. That was quite enjoyable.
The appointments at Hopkins this week were both longer and more frequent than is typical. My appointments are routinely scheduled for 10:30 and I had appointments this week on Monday, Wednesday, Thursday, and now Friday. They have been trying to get me on an every-other-day schedule but this week it proved difficult. And if I have anyone or anything to blame it is the "Type and Cross".
The "Type and Cross" is a blood test that they perform every so often. It serves as a double check on your blood type so that if/when you need blood products (platelets, red blood cells in my case) they have done what they can to verify that they are giving you the correct blood type--very important. Two things have always struck me as odd regarding the 'Type and Cross'. First, the results take significantly longer to process than any of the rest of the tests that get routinely run. I can't figure out why this is. I can remember testing my blood type in a science lab in High School (or maybe it was college). This was accomplished during normal class time and without fancy gadgetry. How is it that what I could accomplish (accurately, I might add) within a one hour period as a half-interested student, takes an organization like Johns Hopkins with all the technology, the best people, 3 or more hours to complete.
The second conundrum with the 'Type and Cross' is that its results are only good for a few days. After so many days have elapsed the blood bank will act as if they do not know what my blood type is and refuse to issue me blood products until a "Type and Cross" is performed. During my first go-around with chemotherapy I learned that the reason behind this is that individuals who get a bone marrow transplant (as I am) may well come away with a different blood type--that of their donor to be precise. Of course I was wondering what that information wasn't in a database somewhere.
The time cost of having your "Type and Cross" elapse is easily two hours and is more likley to be three or more hours under certain circumstances This is a lesson one learns quickly and during my first stint with the clinic I soon learned to keep track of when my last "Type and Cross" was and to press for one if I thought it was set to expire.
But, time has elapsed and it does not seem that all the tricks came back to me.
I was transfused Monday with platelets and red blood cells and was told that I could skip coming in on Tuesday The process took forever because the blood products could not be issued until a 'Type and Cross" had been completed. When I came in on Wednesday it turned out that I hadn't dropped enough to warrant transfusions and was sent home once the blood test results were known--a pleasant surprise. Before I left, the nurse astutely grabbed a late "Type and Cross" blood sample so that it would be analyzed and my records updated for when I came in next--the original plan was for Friday. But two things happened.
First, the logic of sending me home without a transfusion was fine, but my counts would not be at acceptable levels for 48 hours. As a result I received a call on the way home on Monday telling me that I'd have an appointment on Thursday with the goal of giving me the neceessary transfustions to allow me to skip coming in on Friday. Second, as I learned when I returned to the clinic on Thursday, an error was made on the ordering instructions contained on the label on the vial of blood for the "Type and Cross". As a result the test was halted and my "Type and Cross" data was now out of date.
So, the "Type and Cross" had to be ordered when I came in Thursday morning. Another delay followed by significant transfusions. It is hard to imagine that one can get tired sitting in a hospital bed all day but I will tell you that I feel exhausted after spending 6, or 7, or 8 hours sitting around at Hopkins sandwiched between a reasonable amount of car travel just to get there. And then to learn that the platelet transfusion (they take a post-transfusion blood test to guage the results) hadn't been terribly effective and that I would need to return on Friday for more platelets and red blood cells anyway . . .sigh. I have now re-learned my earlier lesson: never let the "Type and Cross" elapse--I'll add that to my mental checklist of things to monitor while I am in the clinic.
I know most would agree that my 'job' right now is to get better. I think I'm off to a good start, actually. I just wish that this job didn't come with days like these. It's been a long week and I'm hoping that I'll be able to get some 'time off' this weekend.
As always, thanks for reading.
--Russ.
Just writing while getting the last of what has seemed to be an endless stream of transfusions. The platelets and red blood cells continue to dip and I alternately make and lose white blood cells. I still have no immune system to speak of, so the risk of infection continues for me.
I have been able to get to Nolan's baseball games which has been fun. I even found a way to position myself at one of the fields so as to be away from everyone and still in a prime spot to 'coach'. That was quite enjoyable.
The appointments at Hopkins this week were both longer and more frequent than is typical. My appointments are routinely scheduled for 10:30 and I had appointments this week on Monday, Wednesday, Thursday, and now Friday. They have been trying to get me on an every-other-day schedule but this week it proved difficult. And if I have anyone or anything to blame it is the "Type and Cross".
The "Type and Cross" is a blood test that they perform every so often. It serves as a double check on your blood type so that if/when you need blood products (platelets, red blood cells in my case) they have done what they can to verify that they are giving you the correct blood type--very important. Two things have always struck me as odd regarding the 'Type and Cross'. First, the results take significantly longer to process than any of the rest of the tests that get routinely run. I can't figure out why this is. I can remember testing my blood type in a science lab in High School (or maybe it was college). This was accomplished during normal class time and without fancy gadgetry. How is it that what I could accomplish (accurately, I might add) within a one hour period as a half-interested student, takes an organization like Johns Hopkins with all the technology, the best people, 3 or more hours to complete.
The second conundrum with the 'Type and Cross' is that its results are only good for a few days. After so many days have elapsed the blood bank will act as if they do not know what my blood type is and refuse to issue me blood products until a "Type and Cross" is performed. During my first go-around with chemotherapy I learned that the reason behind this is that individuals who get a bone marrow transplant (as I am) may well come away with a different blood type--that of their donor to be precise. Of course I was wondering what that information wasn't in a database somewhere.
The time cost of having your "Type and Cross" elapse is easily two hours and is more likley to be three or more hours under certain circumstances This is a lesson one learns quickly and during my first stint with the clinic I soon learned to keep track of when my last "Type and Cross" was and to press for one if I thought it was set to expire.
But, time has elapsed and it does not seem that all the tricks came back to me.
I was transfused Monday with platelets and red blood cells and was told that I could skip coming in on Tuesday The process took forever because the blood products could not be issued until a 'Type and Cross" had been completed. When I came in on Wednesday it turned out that I hadn't dropped enough to warrant transfusions and was sent home once the blood test results were known--a pleasant surprise. Before I left, the nurse astutely grabbed a late "Type and Cross" blood sample so that it would be analyzed and my records updated for when I came in next--the original plan was for Friday. But two things happened.
First, the logic of sending me home without a transfusion was fine, but my counts would not be at acceptable levels for 48 hours. As a result I received a call on the way home on Monday telling me that I'd have an appointment on Thursday with the goal of giving me the neceessary transfustions to allow me to skip coming in on Friday. Second, as I learned when I returned to the clinic on Thursday, an error was made on the ordering instructions contained on the label on the vial of blood for the "Type and Cross". As a result the test was halted and my "Type and Cross" data was now out of date.
So, the "Type and Cross" had to be ordered when I came in Thursday morning. Another delay followed by significant transfusions. It is hard to imagine that one can get tired sitting in a hospital bed all day but I will tell you that I feel exhausted after spending 6, or 7, or 8 hours sitting around at Hopkins sandwiched between a reasonable amount of car travel just to get there. And then to learn that the platelet transfusion (they take a post-transfusion blood test to guage the results) hadn't been terribly effective and that I would need to return on Friday for more platelets and red blood cells anyway . . .sigh. I have now re-learned my earlier lesson: never let the "Type and Cross" elapse--I'll add that to my mental checklist of things to monitor while I am in the clinic.
I know most would agree that my 'job' right now is to get better. I think I'm off to a good start, actually. I just wish that this job didn't come with days like these. It's been a long week and I'm hoping that I'll be able to get some 'time off' this weekend.
As always, thanks for reading.
--Russ.
Saturday, April 17, 2010
Overdue Update
Good Evening All:
Just writing a quick update while waiting for the Overtime session of the Caps game to begin.
Sorry that it has taken me a while to get an update out to everyone. I went into this past week expecting that I would be going to Hopkins daily as an outpatient. That pretty well held true once I was released on Monday. Tuesday, Wednesday, Thursday I had appointments at Hopkins but a funny think happened on the way to the outpatient clinic:
A part of the treatment process that I always thought was running on autopilot surprised me. The transfusions, particularly the platelet transfusions, had become so old hat, so routine, that I was completely caught off guard to learn that there were still tricks to be employed. Specifically, the crafty Dr. Platelet (the name given to a team of doctors that manage the platelet transfusion process) seems to have effectiveely addressed what had become a fairly disconcerting problem where my platelets were dropping precipitously each day and the transfusions that I was receiving to get me out of bleeding danger were becoming less, and less effective. Apparently all along the donors of the platelets and the results of those transfusions were being tracked. On Tuesday a donor that had been identified as a good platelet match for me was brought in to donate platelets. I received those platelets on Wednesday and got the nice news that the blood draw following that transfusion showed an increase in my platelet levels that I had not seen in quite some time.
Thursday I returned to the clinic and learned that overnight my body had not launched an assault on the platelets as it had in the past. As a result, I practically retained the level of platelets I went home with! And even better, I was told I could skip coming in on Friday.
I returned today and the platelets are still holding steady. My red blood cells are above the threshold for receiving a transfusion (but falling very slowly), and my white blood cells are still almost non-existent (and there is not a sign of the neutrophils that we saw about a week ago). So, I get to skip the trip to Hopkins tomorrow as well!
What does all this mean? Well, most of all it means that I get to take in Nolan's second baseball game of the season. I managed to get to his game Wednesday evening. If I can't coach, at least seeing the kids play is the next best thing. Otherwise, it seems to signal a bit more stability--a very welcome development.
In addition, I have an update on the bone marrow transplant front. First, I'd like to apologize. While the process of receiving chemotherapy and transfusions are well known to me by this time, I am navigating this BMT process for the first time and there are many questions that I have been asked for which I simply don't have a certain answer. Probably the most common question I have received recently relates to the process of finding a donor. We received news on that front during the week and I have spent a bit of time this week trying to put it into context a bit.
During the week I was told that 15 ten-out-of-ten matches had been found. This means that of the 10 alleles that have been found to impact the success of a transplant, 15 registered donors have been found to match me on all 10. Knowing that there is another level of genetic testing to refine the level of match and the process of actually arranging for any one of these strangers to agree to donate their marrow to me, it was not clear whether 15 was a good starting point or woefully inadequate or somewhere in between. Based on a conversation I had with a source I trust implicitly on this and other cancer-related topics, 5 ten-out-of-ten matches would be a good start. As a result I have to feel very good about having match that my doctors, and by extension, I have confidence in.
Well, the Caps have won, and I think I might work on catching up on some sleep.
As always, thanks for reading.
---Russ.
Just writing a quick update while waiting for the Overtime session of the Caps game to begin.
Sorry that it has taken me a while to get an update out to everyone. I went into this past week expecting that I would be going to Hopkins daily as an outpatient. That pretty well held true once I was released on Monday. Tuesday, Wednesday, Thursday I had appointments at Hopkins but a funny think happened on the way to the outpatient clinic:
A part of the treatment process that I always thought was running on autopilot surprised me. The transfusions, particularly the platelet transfusions, had become so old hat, so routine, that I was completely caught off guard to learn that there were still tricks to be employed. Specifically, the crafty Dr. Platelet (the name given to a team of doctors that manage the platelet transfusion process) seems to have effectiveely addressed what had become a fairly disconcerting problem where my platelets were dropping precipitously each day and the transfusions that I was receiving to get me out of bleeding danger were becoming less, and less effective. Apparently all along the donors of the platelets and the results of those transfusions were being tracked. On Tuesday a donor that had been identified as a good platelet match for me was brought in to donate platelets. I received those platelets on Wednesday and got the nice news that the blood draw following that transfusion showed an increase in my platelet levels that I had not seen in quite some time.
Thursday I returned to the clinic and learned that overnight my body had not launched an assault on the platelets as it had in the past. As a result, I practically retained the level of platelets I went home with! And even better, I was told I could skip coming in on Friday.
I returned today and the platelets are still holding steady. My red blood cells are above the threshold for receiving a transfusion (but falling very slowly), and my white blood cells are still almost non-existent (and there is not a sign of the neutrophils that we saw about a week ago). So, I get to skip the trip to Hopkins tomorrow as well!
What does all this mean? Well, most of all it means that I get to take in Nolan's second baseball game of the season. I managed to get to his game Wednesday evening. If I can't coach, at least seeing the kids play is the next best thing. Otherwise, it seems to signal a bit more stability--a very welcome development.
In addition, I have an update on the bone marrow transplant front. First, I'd like to apologize. While the process of receiving chemotherapy and transfusions are well known to me by this time, I am navigating this BMT process for the first time and there are many questions that I have been asked for which I simply don't have a certain answer. Probably the most common question I have received recently relates to the process of finding a donor. We received news on that front during the week and I have spent a bit of time this week trying to put it into context a bit.
During the week I was told that 15 ten-out-of-ten matches had been found. This means that of the 10 alleles that have been found to impact the success of a transplant, 15 registered donors have been found to match me on all 10. Knowing that there is another level of genetic testing to refine the level of match and the process of actually arranging for any one of these strangers to agree to donate their marrow to me, it was not clear whether 15 was a good starting point or woefully inadequate or somewhere in between. Based on a conversation I had with a source I trust implicitly on this and other cancer-related topics, 5 ten-out-of-ten matches would be a good start. As a result I have to feel very good about having match that my doctors, and by extension, I have confidence in.
Well, the Caps have won, and I think I might work on catching up on some sleep.
As always, thanks for reading.
---Russ.
Monday, April 12, 2010
The tools of ignorance, indeed.
Good Afternoon All:
Sorry for the delay in writing the next post. It has been an eventful few days with my triumphant return home and a disappointing return to Hopkins after my body temperature crept just beyond the magic 100.4 (38 degrees celsius). I actually started writing this post from Hopkins but went home before I could finish. Warning: its a long one.
The vast majority of people who read my blogs know of my love for baseball and that I have continued to play the sport into adulthood though many may not know my position of choice. Ever since I figured out that my best chance to make the baseball team in High School was to learn to play catcher, I have declared to anyone who would listen that there is no better position on the field. When people learn of this they ask some pretty routine questions: "don't you get tired? and "isn't it bad for your knees?" are the most common.
Even baseball writers, pundits, and observers have differing takes on catching. As quickly as one announcer will call catcher one of the two 'thinking' positions on the field, another will label his gear (the helmet and mask, chest protector, shin guards and padded glove) 'the tools of ignorance'. One may call the catcher the captain of the defense and another will mockingly point out that he's the only player that is facing the wrong direction and the only player that doesn't even stand in fair territory.
Make no mistake, catching in baseball is not like beer league softball. It requires exertion and stamina with a measure of quickness of reflexes and thought. There is a reason why many players do not want to play catcher--it is toughand grimy. But decades of catching has left me with quite a bit. I have had a chance to reflect upon much of this while watching the early season baseball games.
Baseball, as a sport, requires that a player be able to manage his/her emotions. A player that remains excited for a previous good play or hit will often be humbled at their next opportunity. Similarly, a player that does not have faculty for 'forgetting' the bad plays or at bats are doomed to further failures. It is so true that it has become a sporting cliche--'you can't get too high or too low'.
When catching, your next opportunity comes with the next pitch--simply not enough time to stew over things or plot revenge. The catcher needs to get the pitcher settled, watch the batter, call the pitch that he believes will fool the batter, catch the ball and get it back to the pitcher. Lather, rinse, repeat--100+ times a game.
This has application in my current situation. I have learned to enjoy the good news when it comes my way but not to lose vigilance for the hand-washing that keeps the germs at bay. As a catcher I may enjoy the strikeout that my pitcher and I managed to orchestrate, but I cannot forget that there is still an out to get and runners on 1st and 3rd.
I also don't get too down when things don't seem to be going smoothly. Sulking, wallowing in self-pity, and yes guilt, all beget more misery. The ball in the dirt got by me and the runner on third scored. My fault. But the next pitch is coming in. If I don't catch this one the runner that advanced to second will be standing on third. A ball player's memory has to be short. How short is determined by when that next opportunity to perform comes--if I'm standing in the outfield it might be a while. Behind the plate, it is probably less than a minute.
I also believe that catching has tought me physical toughness. People talk about 'tough' individuals as if they inherited the 'toughness' gene. And maybe such a thing exists. I don't believe that it existed for me--I think I learned it when I started catching. The physicality of the position simply won't allow for someone to play it who cannot be tough. Squatting through long innings, allowing pitches that are thrown in the dirt to carrom off of your body in the name of making sure they don't get back to the backstop, inhaling dust for hours on a sweltering June afternoon are all parts of playing catcher that one needs to learn to enjoy. No one counts the number of throws a catcher makes as they count pitches for pitchers, yet for just about every pitch that comes in a throw goes back out to the pitcher. Foul balls tick off of a bat and hit you who-knows-where--I've had my throwing arm go limp for a couple of innings after a foul ball hit me just-so in the shoulder. Home plate is the only place where the fielder can block the runner from touching the base, as a result it is also the only place where a runner can charge through the fielder to knock him off his feet and the ball from his glove. All the while you are expected to think about what how your pitcher is throwing, what the current batter has done in previous at bats, and where the other players on defense are positioned. And there still has to be enough energy to swing the bat and run the bases when it is your turn . . . there is no better way to spend a spring afternoon! But the team counts on the catcher and so the bumps, bruises, turned ankles, sore knees/shoulders/back, are part of what you deal with and keep playing.
Enter cancer and some of the more difficult parts: spinal taps, bone marrow biopsies, and month-long hospital stays (oh my). I don't think that I could grunt and bear them for as long as I have had I never taken up catching. More than once now I have been asked during a 'procedure' if I am ok and more than once it has reminded me that the exact same question is asked of a catcher after a foul ball has hit him squarely in the face mask. As a patient I will say that I am OK--Yes it hurt, we all knew it would hurt but it is what I must endure to get better. As a catcher I will nod to indicate that I'm OK--often taking a shot off the mask truly does not hurt but can leave you feeling a bit dazed. The point is, whether it hurt or not is not the important question. What is important is whether you can continue on. Toughness allows you to continue on. I don't know how many of these cancer-related hardships I would have been equipped to tolerate had I not learned to tolerate quite a bit already. I can only imagine what quittingat this point would cost me.
Unfortunately I won't get to wear the catcher's gear this spring or the coming fall. But, in some respects I guess I always have it on.
As always, thanks for reading.
--Russ.
Sorry for the delay in writing the next post. It has been an eventful few days with my triumphant return home and a disappointing return to Hopkins after my body temperature crept just beyond the magic 100.4 (38 degrees celsius). I actually started writing this post from Hopkins but went home before I could finish. Warning: its a long one.
The vast majority of people who read my blogs know of my love for baseball and that I have continued to play the sport into adulthood though many may not know my position of choice. Ever since I figured out that my best chance to make the baseball team in High School was to learn to play catcher, I have declared to anyone who would listen that there is no better position on the field. When people learn of this they ask some pretty routine questions: "don't you get tired? and "isn't it bad for your knees?" are the most common.
Even baseball writers, pundits, and observers have differing takes on catching. As quickly as one announcer will call catcher one of the two 'thinking' positions on the field, another will label his gear (the helmet and mask, chest protector, shin guards and padded glove) 'the tools of ignorance'. One may call the catcher the captain of the defense and another will mockingly point out that he's the only player that is facing the wrong direction and the only player that doesn't even stand in fair territory.
Make no mistake, catching in baseball is not like beer league softball. It requires exertion and stamina with a measure of quickness of reflexes and thought. There is a reason why many players do not want to play catcher--it is toughand grimy. But decades of catching has left me with quite a bit. I have had a chance to reflect upon much of this while watching the early season baseball games.
Baseball, as a sport, requires that a player be able to manage his/her emotions. A player that remains excited for a previous good play or hit will often be humbled at their next opportunity. Similarly, a player that does not have faculty for 'forgetting' the bad plays or at bats are doomed to further failures. It is so true that it has become a sporting cliche--'you can't get too high or too low'.
When catching, your next opportunity comes with the next pitch--simply not enough time to stew over things or plot revenge. The catcher needs to get the pitcher settled, watch the batter, call the pitch that he believes will fool the batter, catch the ball and get it back to the pitcher. Lather, rinse, repeat--100+ times a game.
This has application in my current situation. I have learned to enjoy the good news when it comes my way but not to lose vigilance for the hand-washing that keeps the germs at bay. As a catcher I may enjoy the strikeout that my pitcher and I managed to orchestrate, but I cannot forget that there is still an out to get and runners on 1st and 3rd.
I also don't get too down when things don't seem to be going smoothly. Sulking, wallowing in self-pity, and yes guilt, all beget more misery. The ball in the dirt got by me and the runner on third scored. My fault. But the next pitch is coming in. If I don't catch this one the runner that advanced to second will be standing on third. A ball player's memory has to be short. How short is determined by when that next opportunity to perform comes--if I'm standing in the outfield it might be a while. Behind the plate, it is probably less than a minute.
I also believe that catching has tought me physical toughness. People talk about 'tough' individuals as if they inherited the 'toughness' gene. And maybe such a thing exists. I don't believe that it existed for me--I think I learned it when I started catching. The physicality of the position simply won't allow for someone to play it who cannot be tough. Squatting through long innings, allowing pitches that are thrown in the dirt to carrom off of your body in the name of making sure they don't get back to the backstop, inhaling dust for hours on a sweltering June afternoon are all parts of playing catcher that one needs to learn to enjoy. No one counts the number of throws a catcher makes as they count pitches for pitchers, yet for just about every pitch that comes in a throw goes back out to the pitcher. Foul balls tick off of a bat and hit you who-knows-where--I've had my throwing arm go limp for a couple of innings after a foul ball hit me just-so in the shoulder. Home plate is the only place where the fielder can block the runner from touching the base, as a result it is also the only place where a runner can charge through the fielder to knock him off his feet and the ball from his glove. All the while you are expected to think about what how your pitcher is throwing, what the current batter has done in previous at bats, and where the other players on defense are positioned. And there still has to be enough energy to swing the bat and run the bases when it is your turn . . . there is no better way to spend a spring afternoon! But the team counts on the catcher and so the bumps, bruises, turned ankles, sore knees/shoulders/back, are part of what you deal with and keep playing.
Enter cancer and some of the more difficult parts: spinal taps, bone marrow biopsies, and month-long hospital stays (oh my). I don't think that I could grunt and bear them for as long as I have had I never taken up catching. More than once now I have been asked during a 'procedure' if I am ok and more than once it has reminded me that the exact same question is asked of a catcher after a foul ball has hit him squarely in the face mask. As a patient I will say that I am OK--Yes it hurt, we all knew it would hurt but it is what I must endure to get better. As a catcher I will nod to indicate that I'm OK--often taking a shot off the mask truly does not hurt but can leave you feeling a bit dazed. The point is, whether it hurt or not is not the important question. What is important is whether you can continue on. Toughness allows you to continue on. I don't know how many of these cancer-related hardships I would have been equipped to tolerate had I not learned to tolerate quite a bit already. I can only imagine what quittingat this point would cost me.
Unfortunately I won't get to wear the catcher's gear this spring or the coming fall. But, in some respects I guess I always have it on.
As always, thanks for reading.
--Russ.
Thursday, April 8, 2010
I'm safe
Good evening all:
I just figured with my earlier announcement that I was returning home many of you might worry about my previous post where I declared that I would clip my nails. I am happy to report that I clipped my nails and, as far as I can tell, I have managed to survive the ordeal.
--Russ.
I just figured with my earlier announcement that I was returning home many of you might worry about my previous post where I declared that I would clip my nails. I am happy to report that I clipped my nails and, as far as I can tell, I have managed to survive the ordeal.
--Russ.
My 100th Post!
Good Afternoon all:
As I logged in to type this out I noticed that I have made 99 posts in the past. If I'm doing my math correctly that makes this the 100th post. Certainly, I would have rather stopped at whatever number it was when I signed off. But, since I needed to crank them back up again I guess it is a milestone worth celebrating.
That celebration, however, pales to the one that I'm having when I write that I am going home today! I still don't have an immune system to speak of. My platelet counts are crashing almost daily so I have an almost daily need for transfusions. I'll be returning to Hopkins on a daily basis for monitoring and any further transfusions. And while all of that might fill me with trepidation, I can't help but feel relieved that I will be able to eat dinner with Marla, Nolan and Audrey each night, help the kids with their homework, tuck them into bed . . .a month of just missing that has been extremely difficult.
You know my propensity for writing more. I'd love to write more but that will have to wait for the next post--I need to pack.
As always, thanks for reading.
--Russ.
As I logged in to type this out I noticed that I have made 99 posts in the past. If I'm doing my math correctly that makes this the 100th post. Certainly, I would have rather stopped at whatever number it was when I signed off. But, since I needed to crank them back up again I guess it is a milestone worth celebrating.
That celebration, however, pales to the one that I'm having when I write that I am going home today! I still don't have an immune system to speak of. My platelet counts are crashing almost daily so I have an almost daily need for transfusions. I'll be returning to Hopkins on a daily basis for monitoring and any further transfusions. And while all of that might fill me with trepidation, I can't help but feel relieved that I will be able to eat dinner with Marla, Nolan and Audrey each night, help the kids with their homework, tuck them into bed . . .a month of just missing that has been extremely difficult.
You know my propensity for writing more. I'd love to write more but that will have to wait for the next post--I need to pack.
As always, thanks for reading.
--Russ.
Tuesday, April 6, 2010
Update
Good Afternoon All:
I realize that if I had been following my normal pattern I would have posted this update yesterday. You'll have to pardon me. I found the third benefit of being a cancer patient (The first is that it gets your priorities straight, the second is that you can eat whatever you want and everyone thinks its wonderful) and so yesterday afternoon/evening and I was busy indulging. If you know me you know of my love for baseball-yesterday I was in bliss as the baseball season kicked off, I watched all or parts (in some cases, very small parts) of 6 games yesterday! The only thing that would have made it better was if I were at home in front of the big screen.
Anyway, I've let it slip in that first paragraph that I am still at Hopkins. My white blood cells are on the rise--slowly. The doctors seem happy with the blood counts with the lone exception that I haven't produced a stinkin' neutrophil. Since neutrophils are the lynchpin of the immune system they will not release me until they see that those are being produced and are on the rise. The doctors have not expressed any concern on that front, just that it will take some time. My only concern, then, is for my sanity as I pass days here in the hospital and miss the wife and kids.
For those who haven't had the chance to visit, I still look and sound just like me. I haven't lost any weight from when I was admitted and I'm generally in good spirits. The big change is the hair loss. I had my head shaved down to stubble when it started coming out. Now that stubble is quickly evaporating as well. I can live with that, especially since I still have my eyebrows and eyelashes. If the hair on my head was going to fall out I would hope that the facial hair would follow suit so I can claim a silver lining on that front as well--the smoothest shave ever!
As always, thanks for reading.
--Russ.
I realize that if I had been following my normal pattern I would have posted this update yesterday. You'll have to pardon me. I found the third benefit of being a cancer patient (The first is that it gets your priorities straight, the second is that you can eat whatever you want and everyone thinks its wonderful) and so yesterday afternoon/evening and I was busy indulging. If you know me you know of my love for baseball-yesterday I was in bliss as the baseball season kicked off, I watched all or parts (in some cases, very small parts) of 6 games yesterday! The only thing that would have made it better was if I were at home in front of the big screen.
Anyway, I've let it slip in that first paragraph that I am still at Hopkins. My white blood cells are on the rise--slowly. The doctors seem happy with the blood counts with the lone exception that I haven't produced a stinkin' neutrophil. Since neutrophils are the lynchpin of the immune system they will not release me until they see that those are being produced and are on the rise. The doctors have not expressed any concern on that front, just that it will take some time. My only concern, then, is for my sanity as I pass days here in the hospital and miss the wife and kids.
For those who haven't had the chance to visit, I still look and sound just like me. I haven't lost any weight from when I was admitted and I'm generally in good spirits. The big change is the hair loss. I had my head shaved down to stubble when it started coming out. Now that stubble is quickly evaporating as well. I can live with that, especially since I still have my eyebrows and eyelashes. If the hair on my head was going to fall out I would hope that the facial hair would follow suit so I can claim a silver lining on that front as well--the smoothest shave ever!
As always, thanks for reading.
--Russ.
Saturday, April 3, 2010
Don't bring long fingernails to a nail clipper fight
Good morning all:
Time for a little observation/humor . . .
Many, many decisions are made here in the cancer wards that are meant to stave off the dangers of our existence. Here in the wards dedicated to the treatment of blood cancers that means that infection risks and bleeding risks are identified with the same wonton-ness that witches were identified in Salem.
A prime example is the decision made by the hospital to restrict those veritable fountains of germs, kids, from the hospital wards at all times. It used to be that it was just during the highly contagious flu season. However, every season is flu season now that H1N1 came on the scene, and now my visits with the kids are left to the waiting area outside the elevators. That is where I do my visiting when they come. But that is one that makes sense.
Others, I simply never thought of. When I wrote in an earlier post that if people feel they need to do or bring something they should think food, I was in the habit of taking prepared/cooked food and reheating it in the microwave. I did this thinking I was doing a good thing. The nurses advise me to avoid foodborne illness, and prepared food that sits out is just gathering microbes, etc. Well, as it turns out I was doing the wrong thing. I innocently discussed this practice with a nurse at one point and she told me of a rule that I didn't know I was violating! No reheating food in the microwave--and that applies to the hospital food (I never bothered reheating that, I just shovel it in and get it over with). The reason behind this is that unless you are heating the food to the point of cooking it a second time (yuck), all you are managing to do is to get the food back to the temperature where bacteria thrives. The thinking follows that you are actually better off to let the food cool as it will and eat it that way. Who knew?! Funny thing, I went to go pop some microwave popcorn last night and the microwave had been taken out of the common pantry. Maybe I ruined the microwaving party that had been raging for who knows how long in unit 5C.
Finally, some decisions are quite perplexing. Given the short notice that I received before being admitted one thing I overlooked was the length of my fingernails. They were getting a little long as of March 12 and now, by April 3 they are longer than I can ever remember them being. I don't know how you women type with these things. Anyway, I asked my nurse if there were any nail clippers on the ward so I could trim them down to a more appropriate length.
Admittedly, my reasons were mostly out of convenience. I spend a lot of time on the computer between continuing work responsibilities, blogging, and entertainment and these fingernails of mine just get in the way. But my request for nail clippers was rejected and safety was given as the reason. "We don't want you to accidently cut yourself and bleed", they said. Funny, they don't have any problem poking holes in me to extract bone marrow or spinal fluid and for a brief period of time I had 5 lumens on 2 separate lines in 2 separate incisions leading directly into the jugular vein in my neck--and they're worried about me bleeding out in some horrible nail clipper accident.
Seeing that I was up against the juggernaut of all hospital arguments, I argued that I'd been clipping my nails for quite some time and thought I was pretty handy with them, but that I never had nails this long. I continued that if I had an itch in the middle of the night I may well claw myself to ribbons. I could bleed out in a self inflicted scratch before anyone knew what ws happening! In that way I hoped to convince the nurse that the nail clippers were the lesser evil in this case. No dice.
So, when I do get home I will, of course, hug and kiss Marla and the kids and give the dog a scratch (carefully) behind the hears. But when all has settled down my thoughts will turn to the nail clippers. Perhaps then I will cheat death and trim them to a safe and proper length.
As always, thanks for reading.
--Russ.
Time for a little observation/humor . . .
Many, many decisions are made here in the cancer wards that are meant to stave off the dangers of our existence. Here in the wards dedicated to the treatment of blood cancers that means that infection risks and bleeding risks are identified with the same wonton-ness that witches were identified in Salem.
A prime example is the decision made by the hospital to restrict those veritable fountains of germs, kids, from the hospital wards at all times. It used to be that it was just during the highly contagious flu season. However, every season is flu season now that H1N1 came on the scene, and now my visits with the kids are left to the waiting area outside the elevators. That is where I do my visiting when they come. But that is one that makes sense.
Others, I simply never thought of. When I wrote in an earlier post that if people feel they need to do or bring something they should think food, I was in the habit of taking prepared/cooked food and reheating it in the microwave. I did this thinking I was doing a good thing. The nurses advise me to avoid foodborne illness, and prepared food that sits out is just gathering microbes, etc. Well, as it turns out I was doing the wrong thing. I innocently discussed this practice with a nurse at one point and she told me of a rule that I didn't know I was violating! No reheating food in the microwave--and that applies to the hospital food (I never bothered reheating that, I just shovel it in and get it over with). The reason behind this is that unless you are heating the food to the point of cooking it a second time (yuck), all you are managing to do is to get the food back to the temperature where bacteria thrives. The thinking follows that you are actually better off to let the food cool as it will and eat it that way. Who knew?! Funny thing, I went to go pop some microwave popcorn last night and the microwave had been taken out of the common pantry. Maybe I ruined the microwaving party that had been raging for who knows how long in unit 5C.
Finally, some decisions are quite perplexing. Given the short notice that I received before being admitted one thing I overlooked was the length of my fingernails. They were getting a little long as of March 12 and now, by April 3 they are longer than I can ever remember them being. I don't know how you women type with these things. Anyway, I asked my nurse if there were any nail clippers on the ward so I could trim them down to a more appropriate length.
Admittedly, my reasons were mostly out of convenience. I spend a lot of time on the computer between continuing work responsibilities, blogging, and entertainment and these fingernails of mine just get in the way. But my request for nail clippers was rejected and safety was given as the reason. "We don't want you to accidently cut yourself and bleed", they said. Funny, they don't have any problem poking holes in me to extract bone marrow or spinal fluid and for a brief period of time I had 5 lumens on 2 separate lines in 2 separate incisions leading directly into the jugular vein in my neck--and they're worried about me bleeding out in some horrible nail clipper accident.
Seeing that I was up against the juggernaut of all hospital arguments, I argued that I'd been clipping my nails for quite some time and thought I was pretty handy with them, but that I never had nails this long. I continued that if I had an itch in the middle of the night I may well claw myself to ribbons. I could bleed out in a self inflicted scratch before anyone knew what ws happening! In that way I hoped to convince the nurse that the nail clippers were the lesser evil in this case. No dice.
So, when I do get home I will, of course, hug and kiss Marla and the kids and give the dog a scratch (carefully) behind the hears. But when all has settled down my thoughts will turn to the nail clippers. Perhaps then I will cheat death and trim them to a safe and proper length.
As always, thanks for reading.
--Russ.
Thursday, April 1, 2010
Update two days later, the hits keep coming
Good Evening all:
When last I wrote I was able to share the good news I received on Monday--the absence of cancer from the most recent biopsy.
Tuesday was also a banner day. While it might not sound like much, heck, it was even the subject of a post that featured uncertainty and trepidation the first time around, I got a Hickman catheter installed in my chest. Its a fairly short, uneventful surgical procedure but what it did was replace the central line that had originally been placed in my neck so that the chemo could start on time. So, not only did one line get installed the other got removed. All-in-all I like the trade. First, I lived with the line in my chest for some time and so it isn't as weird as it felt before. Second, the central line was, well, a pain in the neck. It was placed in such an inconvenient spot for keeping the line dry while showering (assuming I wanted to wash my hair). It made sleeping uncomfortable and really hurt when the tubing got caught on something and my leash grew unexpectedly shorter.
In addition to the change in chemo/blood product delivery systems, I have started to hear rumblings about going home. During rounds on Tuesday the doctor mentioned that they might consider sending someone home, even though their counts hadn't recovered, around day 18 or 20. For me that would be Friday or Sunday this coming weekend. Today, the same doctor seemed to focus on Monday as a possibility. Regardless of the day, the fact that it is even part of the conversation is very liberating--the proverbial light at the end of the tunnel. This, of course, is the big news.
In an April Fool's worthy turn of events my hair started coming out today. There is a place here at Hopkins that will assist cancer patients in managing their appearance. Today they helped me manage to rid myself of a lot of hair with a very short shelf life. So, I'm back to my close-cropped look and can only guess how long before close-cropped gives way to bald.
I guess it can't all be good news but I feel very positive about how I'm doing. I haven't lost much weight, I've got plenty of strength and energy and an appetite that doesn't belong in a cancer ward. The chemo has worked and it hasn't taken much, if anything, away from me. Now to enjoy a little bit of time at home, with life a little more like normal, until I need to gear myself up for the running start toward the bone marrow transplant.
As always, thanks for reading.
--Russ.
When last I wrote I was able to share the good news I received on Monday--the absence of cancer from the most recent biopsy.
Tuesday was also a banner day. While it might not sound like much, heck, it was even the subject of a post that featured uncertainty and trepidation the first time around, I got a Hickman catheter installed in my chest. Its a fairly short, uneventful surgical procedure but what it did was replace the central line that had originally been placed in my neck so that the chemo could start on time. So, not only did one line get installed the other got removed. All-in-all I like the trade. First, I lived with the line in my chest for some time and so it isn't as weird as it felt before. Second, the central line was, well, a pain in the neck. It was placed in such an inconvenient spot for keeping the line dry while showering (assuming I wanted to wash my hair). It made sleeping uncomfortable and really hurt when the tubing got caught on something and my leash grew unexpectedly shorter.
In addition to the change in chemo/blood product delivery systems, I have started to hear rumblings about going home. During rounds on Tuesday the doctor mentioned that they might consider sending someone home, even though their counts hadn't recovered, around day 18 or 20. For me that would be Friday or Sunday this coming weekend. Today, the same doctor seemed to focus on Monday as a possibility. Regardless of the day, the fact that it is even part of the conversation is very liberating--the proverbial light at the end of the tunnel. This, of course, is the big news.
In an April Fool's worthy turn of events my hair started coming out today. There is a place here at Hopkins that will assist cancer patients in managing their appearance. Today they helped me manage to rid myself of a lot of hair with a very short shelf life. So, I'm back to my close-cropped look and can only guess how long before close-cropped gives way to bald.
I guess it can't all be good news but I feel very positive about how I'm doing. I haven't lost much weight, I've got plenty of strength and energy and an appetite that doesn't belong in a cancer ward. The chemo has worked and it hasn't taken much, if anything, away from me. Now to enjoy a little bit of time at home, with life a little more like normal, until I need to gear myself up for the running start toward the bone marrow transplant.
As always, thanks for reading.
--Russ.
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