Good afternoon all:
Wanted to write and quickly disseminate some good news that I received yesterday. On day 14 of my protocol, they take a bone marrow sample (yes, that's three holes in my pelvic bone in the span of 17 days) to review the effectiveness of the treatment that I received.
While the results are not official, under the microscope it appeared that there were no cancerous cells found and, get ready for this, perhaps the beginnings of healthy white blood cells being formed! Let me tell you what this means, and what it doesn't mean:
What it means:
1. The chemo did what it was supposed to do, take me out of immediate danger by halting the production of cancerous cells.
2. That there is a chance that my body will be producing healthy white blood cells in the near future.
3. Perhaps there is something to this whole visualization bit, and that perhaps I/we, do have the capacity to heal ourselves or alter the body's processes with a modicum of concentration and effort--I guess I can't rule it out anyway.
What it doesn't mean:
1. I am cured. This treatment is to buy time for the Bone Marrow Transplant. History with this disease indicates that a second remission is not likely to be a lasting one. But as the attending physician told me when he laid out the plans for all this: "if the chemo doesn't work then we're in trouble." Glad I'm beyond that hurdle.
2. I'm going home soon. Even if they were white blood cells being formed, I will need to achieve the necessary levels in order to go home. I need to start somewhere of course, but the pace that I recover the white blood cells is anyone's guess.
3. I am free and clear of all the negative effects of chemo. The Research Nurse that is leading my protocol lingered after rounds today and I asked her about my full head of hair. She said that she was surprised that it hadn't fallen out since she last saw me and indicated that no one, to date, had kept it and that I should expect it to fall out in the coming week. Perhaps a nice reminder that I've achieved one milestone in a process that will require many such achievements and that there is still quite a bit to be endured as well. But I guess one could hope, right?
So, good news: I can say that the immediate threat has been removed and I am now a little more firmly on the path toward a long term cure. Breathe a sigh of relief for me. My red blood cells are dropping and so I'm not carrying that much oxygen these days . . .
As always, thanks for reading.
--Russ.
Tuesday, March 30, 2010
Sunday, March 28, 2010
Apparently Boredom Cuts Both Ways
Good Morning All:
From my first treatment regimen you may remember the post where I wrote about learning it was a good thing to be 'unremarkable'. I am pleased to write that I continue to be unremarkable and that perhaps I have even now lapsed into being 'boring'. The slight difference in connotation is this: Unremarkable means that despite a flurry of things to do, there is little comment or concern warranted from a medical standpoint. Boring, on the other hand, removes the flurry of things to do from the equation.
So where my earlier hospitalizations were for chemotherapy threatments, there was always changing out of medicines as it was a pretty complicated regimen. Those hospital stays lasted for just the duration of the treatment itself and I was released. But in so much as these stays didn't come with complications I was unremarkable.
Since I am being kept until my body recovers this time around, there is now little for anyone to do as it relates to my care. Nurses are here for 12 hour shifts and I'd say I see them three times, on average, during their shift. And these visits are for routine check ups etc.--nothing that particularly tests them as nurses. Since the risk of infection is so great right now, and treating that circumstance would NOT be boring, I receive many laudatory comments on just how boring I've become.
So while I'm bored with my hospitalization it is also comforting to know that the "Hospital" (or at least the medical staff, not necessarily the accounting department) is bored with me.
Finally, there has been a very nice undercurrent of interest and encouragement in my Magellan-like efforts to explore and solve the body's mystery of white blood cell production. I regret to inform you all that just after Friday's post I learned that, in fact, the production of white blood cells at this point would be an ominous signal that the chemotherapy was ineffective. I was told that it is more typical for white blood cells to start returning around day 21 (Friday was day 10). For that reason I have temporarily stopped my efforts at making my own white blood cells--sort of an avoidance of the be-careful-what-you-wish-for phenomenon. In the meantime, I am continuing to spend time daily envisioning/encouraging the cleansing of my bone marrow. I'll resume the quest for white blood cell production when it is time.
In the meantime we can all cheer the fact that my white blood cells are still "<50", and I continue to need regular transfusions of red blood cells and platelets about every third day (a tiny bit of exctitement for the night nurse as those usually happen over night). Seems like an odd thing to take comfort in, but here we are . . .
As always, thanks for reading.
--Russ.
From my first treatment regimen you may remember the post where I wrote about learning it was a good thing to be 'unremarkable'. I am pleased to write that I continue to be unremarkable and that perhaps I have even now lapsed into being 'boring'. The slight difference in connotation is this: Unremarkable means that despite a flurry of things to do, there is little comment or concern warranted from a medical standpoint. Boring, on the other hand, removes the flurry of things to do from the equation.
So where my earlier hospitalizations were for chemotherapy threatments, there was always changing out of medicines as it was a pretty complicated regimen. Those hospital stays lasted for just the duration of the treatment itself and I was released. But in so much as these stays didn't come with complications I was unremarkable.
Since I am being kept until my body recovers this time around, there is now little for anyone to do as it relates to my care. Nurses are here for 12 hour shifts and I'd say I see them three times, on average, during their shift. And these visits are for routine check ups etc.--nothing that particularly tests them as nurses. Since the risk of infection is so great right now, and treating that circumstance would NOT be boring, I receive many laudatory comments on just how boring I've become.
So while I'm bored with my hospitalization it is also comforting to know that the "Hospital" (or at least the medical staff, not necessarily the accounting department) is bored with me.
Finally, there has been a very nice undercurrent of interest and encouragement in my Magellan-like efforts to explore and solve the body's mystery of white blood cell production. I regret to inform you all that just after Friday's post I learned that, in fact, the production of white blood cells at this point would be an ominous signal that the chemotherapy was ineffective. I was told that it is more typical for white blood cells to start returning around day 21 (Friday was day 10). For that reason I have temporarily stopped my efforts at making my own white blood cells--sort of an avoidance of the be-careful-what-you-wish-for phenomenon. In the meantime, I am continuing to spend time daily envisioning/encouraging the cleansing of my bone marrow. I'll resume the quest for white blood cell production when it is time.
In the meantime we can all cheer the fact that my white blood cells are still "<50", and I continue to need regular transfusions of red blood cells and platelets about every third day (a tiny bit of exctitement for the night nurse as those usually happen over night). Seems like an odd thing to take comfort in, but here we are . . .
As always, thanks for reading.
--Russ.
Friday, March 26, 2010
Update - 3/26/2010
Good Morning All:
Figured I was overdue for a post. All really continues as it ever was. The chemo is long over (finished 1 week ago now) and the waiting for the return of my immune system continues. I haven't seen the results of my blood tests from last night so I can't know for certain what is happening with the white blood cells. Certainly no one came bursting into my room last night proclaiming that I had set the medical community on its ear with my magical white blood cell-making ability. I would love to learn today that the white blood cell count reads something other than "<50", which translates to "too small to measure or mention". The critical count of neutrophils (a subset of white blood cells) continues to be pegged at zero.
I do continue to try to visualize my body making white blood cells, and while I'm at it, ousting cancer. I still believe that it is possible for someone who is practiced to influence even this part of their body's functioning--I simply don't have the practice. Yet.
This dismal news isn't exactly dismal, however. As the doctors point out to me each day on rounds, my body is responding as they would expect. And better, while I am at a severe risk for infection of any kind, I have not had any tell-tale fevers and continue to look strong. So, while I simply long to escape from the hospital and return home, I do have to be thankful that I have not had to experience complications from the chemotherapy or the resulting lack of an immune system, and that there is every indication that the chemotherapy has done what it was intended to do.
A few words of thanks are in order: I've gotten many phone calls, visits and promises of visits. When I was here on 3-5 day stints it seemed almost a burden to have visitors. But with this lengthy stay visitors do break up the monotony. Thank you to all those who have contacted me or visited. The contact with the outside world is much, much appreciated.
Many ask what they can send or bring to ease some of the boredom. I'll say that I have with me most of what folks tend to think of as remedies. While I still get bored from time-to-time, these are pretty much enough. The thing that I have found that I appreciate most are meals. That isn't meant to say that you should cook for me and send loads of food to Russ French, C/O . . . No (I don't have any real refrigeration or freezing options that aren't communal). But if you are visiting and feel that you would like to bring me something: think food. And, if you think food, call or e-mail me before you buy. Without an immune system I have some pretty strict controls on diet to avoid foodborne illness.
And one final thought/note/anectdote. My mother stopped by for a visit when returning from visiting her parents in York, PA. She told me that my blog has accomplished what many years of effort from her had not: get my grandmother on the internet. During my first stint, my mom would print out the blog posts and bring them up for my grandparents to read. During her recent visit, my grandmother asked my mom to take her to the library in her retirement community and show her how to get to the blog. After a few lessons on how to use the mouse (and perhaps some modified technique to accomplish double-clicking) my grandmother was able to see and read the blog herself--glad I posted that day. She now has detailed instructions on how to log in to the computer and how to navigate her way to the point where she can read the blog. I hope she continues to try. If you are reading this (on a computer screen), Mammaw, congrats! I'm honored to count you among my readers!
As always, thanks for reading . . .
--Russ.
Figured I was overdue for a post. All really continues as it ever was. The chemo is long over (finished 1 week ago now) and the waiting for the return of my immune system continues. I haven't seen the results of my blood tests from last night so I can't know for certain what is happening with the white blood cells. Certainly no one came bursting into my room last night proclaiming that I had set the medical community on its ear with my magical white blood cell-making ability. I would love to learn today that the white blood cell count reads something other than "<50", which translates to "too small to measure or mention". The critical count of neutrophils (a subset of white blood cells) continues to be pegged at zero.
I do continue to try to visualize my body making white blood cells, and while I'm at it, ousting cancer. I still believe that it is possible for someone who is practiced to influence even this part of their body's functioning--I simply don't have the practice. Yet.
This dismal news isn't exactly dismal, however. As the doctors point out to me each day on rounds, my body is responding as they would expect. And better, while I am at a severe risk for infection of any kind, I have not had any tell-tale fevers and continue to look strong. So, while I simply long to escape from the hospital and return home, I do have to be thankful that I have not had to experience complications from the chemotherapy or the resulting lack of an immune system, and that there is every indication that the chemotherapy has done what it was intended to do.
A few words of thanks are in order: I've gotten many phone calls, visits and promises of visits. When I was here on 3-5 day stints it seemed almost a burden to have visitors. But with this lengthy stay visitors do break up the monotony. Thank you to all those who have contacted me or visited. The contact with the outside world is much, much appreciated.
Many ask what they can send or bring to ease some of the boredom. I'll say that I have with me most of what folks tend to think of as remedies. While I still get bored from time-to-time, these are pretty much enough. The thing that I have found that I appreciate most are meals. That isn't meant to say that you should cook for me and send loads of food to Russ French, C/O . . . No (I don't have any real refrigeration or freezing options that aren't communal). But if you are visiting and feel that you would like to bring me something: think food. And, if you think food, call or e-mail me before you buy. Without an immune system I have some pretty strict controls on diet to avoid foodborne illness.
And one final thought/note/anectdote. My mother stopped by for a visit when returning from visiting her parents in York, PA. She told me that my blog has accomplished what many years of effort from her had not: get my grandmother on the internet. During my first stint, my mom would print out the blog posts and bring them up for my grandparents to read. During her recent visit, my grandmother asked my mom to take her to the library in her retirement community and show her how to get to the blog. After a few lessons on how to use the mouse (and perhaps some modified technique to accomplish double-clicking) my grandmother was able to see and read the blog herself--glad I posted that day. She now has detailed instructions on how to log in to the computer and how to navigate her way to the point where she can read the blog. I hope she continues to try. If you are reading this (on a computer screen), Mammaw, congrats! I'm honored to count you among my readers!
As always, thanks for reading . . .
--Russ.
Tuesday, March 23, 2010
Touch of Humor, perhaps
Good Morning All:
I figured I would lighten the mood a bit this AM before I get hauled away for my 2:30 spinal tap. This little anectdote actually occurred a few hours ago as I received platelets to bolster my sinking bloodcounts.
At several points throughout the day, and also as part of monitoring when receiving blood products, a nurse or CA (don't ask me what CA stands for) will come in and 'take my vitals'. It isn't as harrowing as it sounds, of course, and what they actually are doing is taking simple measurements of blood pressure, temperature, and heart rate. The goal of this is to ensure that early indicators of larger problems might be seen and perhaps acted upon. These checks are done specifically 15 minutes after the start of receiving blood products because an allergic reaction is possible and so they look for a spike in body temperature as a sign.
Anyway, vitals are collected using a little machine, a little blue box on a wheeled pedestal. The blood pressure cuff, thermometer, and a little cuff that fits over an index figure all hang from the sides of the machine. In rapid succession these are attached to the patient, a button pressed and the numbers start coming back.
Over time I've learned that my blood pressure tends to cause alarm in the middle of the night if I allow them to take it while I'm laying down--its always on the low side 110/60 would be pretty common, but when I've been laying down for a while it might look more like 92/54. As a result, I've taken to sitting up when they come in which allows for a brief moment of conversation--something I think the night nurses actually appreciate since they seem to indulge in it pretty freely.
This morning when my nurse came in to take my vitals around 4:30, I sat up. Typically, they protest that it isn't necessary so I will often explain why I choose to sit up as I do so. This nurse was no different but she understood my logic and proceeded to attach the blood pressure cuff. I went on to tell her that I would also lower my heart rate too. This is actually something I learned I could do my first go-around here at Hopkins--something of a parlor trick for the patient to amuse the nursing staff (and himself). True to form, the nurse raised a doubtful eyebrow.
When the cuff on the index figure started reading out my heart rate it was at 101 beats per minute (seems fast to me, which is why I started thinking I ought to lower it to avoid alarm from the doctors). In very short order the number dropped to 93, 88, 84--actually faster than I had ever accomplished this little trick of mine in the past. The nurse was shocked but I got a little excited and the heart rate started rising as a result. At any rate the effect of the little parlor trick had been achieved. The nurse told me I made her night and that it was like a magic trick that my heart rate slowed on command like that!
Recalling this amuses me on two fronts. First, the nurses here have seen quite a bit and are very, very professional. To hit them with something that they've never seen before can be pretty humorous (assuming it isn't an alarming health condition)--and to interject a little 'fun' into what is otherwise a somewhat dull exchange seems to lift everyone's spirits a bit.
Second, it never ceases to amaze me that this trick amazes them. I've written before that it seems the medical community often loses sight of any notion that there is benefit or cure that can be derived from something that is not chemically-based. So dependent they've become on the prescription and the standards of care that the very fact that the brain controls the beating of your heart is lost. The notion that simple meditation can lower one's heart rate should be well known and encouraged in a hospital setting, instead when displayed by a novice like me its 'almost like a magic trick'. It also makes me wonder what else I am able to control.
Reflecting on this idea this morning I actually spent 10-15 minutes trying to create white blood cells. Since I can't really explain what I'm doing to lower my heart rate perhaps I know instinctively how to make white blood cells. I just know that I won't bother asking the doctors if it is possible. If, instead, I set the medical community on its ear because of my remarkable recuperative powers perhaps they'll start taking notice of what is possible. Or perhaps I'll simply pass into nursing lore as that bizarre patient who could control his heart rate and recovered his white blood cell counts in half the time of other patients.
Thanks for reading . . .
--Russ.
I figured I would lighten the mood a bit this AM before I get hauled away for my 2:30 spinal tap. This little anectdote actually occurred a few hours ago as I received platelets to bolster my sinking bloodcounts.
At several points throughout the day, and also as part of monitoring when receiving blood products, a nurse or CA (don't ask me what CA stands for) will come in and 'take my vitals'. It isn't as harrowing as it sounds, of course, and what they actually are doing is taking simple measurements of blood pressure, temperature, and heart rate. The goal of this is to ensure that early indicators of larger problems might be seen and perhaps acted upon. These checks are done specifically 15 minutes after the start of receiving blood products because an allergic reaction is possible and so they look for a spike in body temperature as a sign.
Anyway, vitals are collected using a little machine, a little blue box on a wheeled pedestal. The blood pressure cuff, thermometer, and a little cuff that fits over an index figure all hang from the sides of the machine. In rapid succession these are attached to the patient, a button pressed and the numbers start coming back.
Over time I've learned that my blood pressure tends to cause alarm in the middle of the night if I allow them to take it while I'm laying down--its always on the low side 110/60 would be pretty common, but when I've been laying down for a while it might look more like 92/54. As a result, I've taken to sitting up when they come in which allows for a brief moment of conversation--something I think the night nurses actually appreciate since they seem to indulge in it pretty freely.
This morning when my nurse came in to take my vitals around 4:30, I sat up. Typically, they protest that it isn't necessary so I will often explain why I choose to sit up as I do so. This nurse was no different but she understood my logic and proceeded to attach the blood pressure cuff. I went on to tell her that I would also lower my heart rate too. This is actually something I learned I could do my first go-around here at Hopkins--something of a parlor trick for the patient to amuse the nursing staff (and himself). True to form, the nurse raised a doubtful eyebrow.
When the cuff on the index figure started reading out my heart rate it was at 101 beats per minute (seems fast to me, which is why I started thinking I ought to lower it to avoid alarm from the doctors). In very short order the number dropped to 93, 88, 84--actually faster than I had ever accomplished this little trick of mine in the past. The nurse was shocked but I got a little excited and the heart rate started rising as a result. At any rate the effect of the little parlor trick had been achieved. The nurse told me I made her night and that it was like a magic trick that my heart rate slowed on command like that!
Recalling this amuses me on two fronts. First, the nurses here have seen quite a bit and are very, very professional. To hit them with something that they've never seen before can be pretty humorous (assuming it isn't an alarming health condition)--and to interject a little 'fun' into what is otherwise a somewhat dull exchange seems to lift everyone's spirits a bit.
Second, it never ceases to amaze me that this trick amazes them. I've written before that it seems the medical community often loses sight of any notion that there is benefit or cure that can be derived from something that is not chemically-based. So dependent they've become on the prescription and the standards of care that the very fact that the brain controls the beating of your heart is lost. The notion that simple meditation can lower one's heart rate should be well known and encouraged in a hospital setting, instead when displayed by a novice like me its 'almost like a magic trick'. It also makes me wonder what else I am able to control.
Reflecting on this idea this morning I actually spent 10-15 minutes trying to create white blood cells. Since I can't really explain what I'm doing to lower my heart rate perhaps I know instinctively how to make white blood cells. I just know that I won't bother asking the doctors if it is possible. If, instead, I set the medical community on its ear because of my remarkable recuperative powers perhaps they'll start taking notice of what is possible. Or perhaps I'll simply pass into nursing lore as that bizarre patient who could control his heart rate and recovered his white blood cell counts in half the time of other patients.
Thanks for reading . . .
--Russ.
Sunday, March 21, 2010
Update - 3/21/2010
Morning All:
For those who read and commented or otherwise contacted me about yesterday's post. Thank you. I think it was pretty obvious that yesterday's post was for me to hash out some feelings. The perspectives and counterpoints (and support) offered by others were exactly what the doctor ordered so that I can get my 'head right' going into this long process.
For those who like to indulge in the mundane, allow me to get you up to speed on what is happening in my care.
First, the chemotherapy regimen that started on Monday is over--it ended Friday night. So far I still have hair, eyebrows, eyelashes. I will not get another chemo regimen for perhaps another month or two.
So why am I still an inpatient? Well, it hasn't been exactly spelled out to me except that as with all chemotherapies targeting leukemia, my counts will crash. And they have been. I am now neutropenic--this means that my infection-fighting white blood cells (neutrophils) are at critically low levels. This means that I am at high risk of infection, colds, cuts, foodborne illness, are all risks that bear monitoring. So, I am here at least until the counts drop and recover to an acceptable level.
I continue to get blood and platelet transfusions as these become absolutely necessary as my bone marrow shuts down. I somehow staved off the need for platelets last night, but the attending physician assures me that I can bank on needing a transfusion, then, tonight.
Probably the best news, however, is that my nurse triumphantly reduced my fluid intake from 120 ccs per hour to 10 ccs per hour. Why is this important? Well, if YOU were the one getting up every hour or so to go to the bathroom, you'd be happy for the decrease in fluids too! I'm hoping that I'll get a reasonable night's sleep for the first time in over a week tonight.
--Russ.
For those who read and commented or otherwise contacted me about yesterday's post. Thank you. I think it was pretty obvious that yesterday's post was for me to hash out some feelings. The perspectives and counterpoints (and support) offered by others were exactly what the doctor ordered so that I can get my 'head right' going into this long process.
For those who like to indulge in the mundane, allow me to get you up to speed on what is happening in my care.
First, the chemotherapy regimen that started on Monday is over--it ended Friday night. So far I still have hair, eyebrows, eyelashes. I will not get another chemo regimen for perhaps another month or two.
So why am I still an inpatient? Well, it hasn't been exactly spelled out to me except that as with all chemotherapies targeting leukemia, my counts will crash. And they have been. I am now neutropenic--this means that my infection-fighting white blood cells (neutrophils) are at critically low levels. This means that I am at high risk of infection, colds, cuts, foodborne illness, are all risks that bear monitoring. So, I am here at least until the counts drop and recover to an acceptable level.
I continue to get blood and platelet transfusions as these become absolutely necessary as my bone marrow shuts down. I somehow staved off the need for platelets last night, but the attending physician assures me that I can bank on needing a transfusion, then, tonight.
Probably the best news, however, is that my nurse triumphantly reduced my fluid intake from 120 ccs per hour to 10 ccs per hour. Why is this important? Well, if YOU were the one getting up every hour or so to go to the bathroom, you'd be happy for the decrease in fluids too! I'm hoping that I'll get a reasonable night's sleep for the first time in over a week tonight.
--Russ.
Saturday, March 20, 2010
Good Morning All:
This is the post that kept me awake last night. I hope it reads as good as it sounded as I tried to ignore it and fall back asleep . . .
We've all seen plenty of 'very special episodes of ___________' where we see the drama play out on our televisions. The patient moves through phases of emotion ranging from profound sadness to anger. It is presented as predictable and, having seen more than one of these dramas, we all nod our head and say 'ah, yes, the anger . . . here it comes.'
I've been asked several times directly, or indirectly, about my emotions or feelings surrounding this newest detour. It has been slightly over a week now and I think they would be fairly easy to catalogue and, for those who really like those 'very special episodes', perhaps a little surprising.
I have never felt angry, or at least I don't recall it. Not the first time around. Not now. I don't get angry easily and perhaps that is a part of it, but frankly I don't see the point. Anger as I've ever experienced it has a target. Try as I might, I can't figure out the cause of my cancer and therefore I have no logical target. I suppose if that changed somehow, and I came to know the likely source of my cancer maybe I could find my way to anger.
So what are the emotions? Two come to mind as the predominant ones. I feel frustration every day. It comes in the form of the wheeled pole (affectionately named Twiggy) that holds chemo, fluids, anything I 'need'. It is attached to me by tubes that currently run into a line that has been inserted into my neck. I have a leash, and sometimes that leash feels very, very short. But far beyond that is the frustration that I feel for the things I am not able to do--my professional life and personal life are both effected and these are the frustrations that take the greatest toll. Fortunately, it seems I'll be able to stay in touch with work during the short term leading up to the transplant. But I had to give up coaching Nolan's baseball team this year. I will miss that--it had become a big part of who I was each spring.
Fortunately, lessons learned from the first time around mitigate this frustration somewhat. I now have a sense of how limited I am by this current process from having gone through it before, and I can game the system. I'm in touch with work and helping to ease transitions and continue projects that were in process when I got the news.
By far, the dominant emotion is guilt. And before you raise 'very special episode'-type protests I think its important that you keep reading.
I recognize that the big stone was thrown right in the middle of my pond. Big splash, lots of drama. But to continue the analogy there is little more for me to do than to deal with that stone--let it sink to the bottom, cover it up with algae, crush it into sand (hopefully). I have a very clear focus and a team far more experienced in this than I dedicated to helping me carry it out.
So while that is going on, the waves are washing up on everyone else's shore. The effects on my immediate family are easy to imagine. Marla is immediately thrust into single parenthood (just as crazy baseball season begins). The kids (ages 5 and 9) aren't equipped to deal with this. It isn't fair to them to have to cope with this yet again during these formative years. Regardless of the cause, that is because of me.
Carry it further. My parents are currently culling responsibilities that they happily took on in their retirement so that they can help my family and I out.
And further. Marla's parents are beside themselves looking for ways to help, friends are doing things outside of their normal routines in an effort to pick up the slack or to help in some way.
And further. My sharp, forced absence from work makes potential difficulties all over. Perhaps I was the bottleneck, in which case I'm all wet, but I like to think that things were pretty smooth at work. I can only assume that they are less so now. And that means that the people I work with and respect greatly are having to carry part of load I was carrying.
I know that while I focus on my family they focus on me. I know that those who help do so willingly, out of a desire to help me or my family, or both. I know that my co-workers probably think, 'wow, what do I have to complain about.' And I am thankful for that support every day (whaddaya know, a third emotion).
From where I stand absorbing the stone thrown into my pond, however, it looks like everyone else is on the shore getting repeatedly battered by the waves. And these waves are assuredly not of their own making. I cannot necessarily say the same thing--and that takes me to the last 'kernel' of my guilt exploration.
After going through Hyper CVAD and returning to my normal life, I made a fair number of very conscious choices about how certain priorities and behaviors would change with the specific aim of avoiding relapse. Some of you may have heard one or two, been present for the catharsis that yielded one, or can even guess at some by having witnessed changes in my demeanor or behavior. Perhaps Marla is the only one that might be able to list a good portion of them. I will not list them out here--some are very innocuous, but I view the list in its entirety as private and beyond the reach of my open book-ness. But I can tell you that I violated at least two of the items that would appear on that list in the months before my relapse and I worried about the ramifications as I violated them.
And here I am. Did I let myself down? Did I somehow cause my own relapse? Are you all being pounded by the waves from the stone that I threw into my own pond? I can't know. If I asked the doctors they would tell me that they can't know, but probably not. And so none of us will likely ever know for certain. But the guilt is there. It is a predominant emotion, when I allow emotion to be part of the equation.
So, if you ever feel like you are being pounded by the waves from the stone tossed into my pond, let me be the first to say that I'm sorry--whether its my fault or not. By reading this, and accepting that apology, you are helping me immeasurably by helping me cope with the guilt.
As always, thank you for reading. Comments, thoughts, heck, even protests, are welcome.
--Russ.
This is the post that kept me awake last night. I hope it reads as good as it sounded as I tried to ignore it and fall back asleep . . .
We've all seen plenty of 'very special episodes of ___________' where we see the drama play out on our televisions. The patient moves through phases of emotion ranging from profound sadness to anger. It is presented as predictable and, having seen more than one of these dramas, we all nod our head and say 'ah, yes, the anger . . . here it comes.'
I've been asked several times directly, or indirectly, about my emotions or feelings surrounding this newest detour. It has been slightly over a week now and I think they would be fairly easy to catalogue and, for those who really like those 'very special episodes', perhaps a little surprising.
I have never felt angry, or at least I don't recall it. Not the first time around. Not now. I don't get angry easily and perhaps that is a part of it, but frankly I don't see the point. Anger as I've ever experienced it has a target. Try as I might, I can't figure out the cause of my cancer and therefore I have no logical target. I suppose if that changed somehow, and I came to know the likely source of my cancer maybe I could find my way to anger.
So what are the emotions? Two come to mind as the predominant ones. I feel frustration every day. It comes in the form of the wheeled pole (affectionately named Twiggy) that holds chemo, fluids, anything I 'need'. It is attached to me by tubes that currently run into a line that has been inserted into my neck. I have a leash, and sometimes that leash feels very, very short. But far beyond that is the frustration that I feel for the things I am not able to do--my professional life and personal life are both effected and these are the frustrations that take the greatest toll. Fortunately, it seems I'll be able to stay in touch with work during the short term leading up to the transplant. But I had to give up coaching Nolan's baseball team this year. I will miss that--it had become a big part of who I was each spring.
Fortunately, lessons learned from the first time around mitigate this frustration somewhat. I now have a sense of how limited I am by this current process from having gone through it before, and I can game the system. I'm in touch with work and helping to ease transitions and continue projects that were in process when I got the news.
By far, the dominant emotion is guilt. And before you raise 'very special episode'-type protests I think its important that you keep reading.
I recognize that the big stone was thrown right in the middle of my pond. Big splash, lots of drama. But to continue the analogy there is little more for me to do than to deal with that stone--let it sink to the bottom, cover it up with algae, crush it into sand (hopefully). I have a very clear focus and a team far more experienced in this than I dedicated to helping me carry it out.
So while that is going on, the waves are washing up on everyone else's shore. The effects on my immediate family are easy to imagine. Marla is immediately thrust into single parenthood (just as crazy baseball season begins). The kids (ages 5 and 9) aren't equipped to deal with this. It isn't fair to them to have to cope with this yet again during these formative years. Regardless of the cause, that is because of me.
Carry it further. My parents are currently culling responsibilities that they happily took on in their retirement so that they can help my family and I out.
And further. Marla's parents are beside themselves looking for ways to help, friends are doing things outside of their normal routines in an effort to pick up the slack or to help in some way.
And further. My sharp, forced absence from work makes potential difficulties all over. Perhaps I was the bottleneck, in which case I'm all wet, but I like to think that things were pretty smooth at work. I can only assume that they are less so now. And that means that the people I work with and respect greatly are having to carry part of load I was carrying.
I know that while I focus on my family they focus on me. I know that those who help do so willingly, out of a desire to help me or my family, or both. I know that my co-workers probably think, 'wow, what do I have to complain about.' And I am thankful for that support every day (whaddaya know, a third emotion).
From where I stand absorbing the stone thrown into my pond, however, it looks like everyone else is on the shore getting repeatedly battered by the waves. And these waves are assuredly not of their own making. I cannot necessarily say the same thing--and that takes me to the last 'kernel' of my guilt exploration.
After going through Hyper CVAD and returning to my normal life, I made a fair number of very conscious choices about how certain priorities and behaviors would change with the specific aim of avoiding relapse. Some of you may have heard one or two, been present for the catharsis that yielded one, or can even guess at some by having witnessed changes in my demeanor or behavior. Perhaps Marla is the only one that might be able to list a good portion of them. I will not list them out here--some are very innocuous, but I view the list in its entirety as private and beyond the reach of my open book-ness. But I can tell you that I violated at least two of the items that would appear on that list in the months before my relapse and I worried about the ramifications as I violated them.
And here I am. Did I let myself down? Did I somehow cause my own relapse? Are you all being pounded by the waves from the stone that I threw into my own pond? I can't know. If I asked the doctors they would tell me that they can't know, but probably not. And so none of us will likely ever know for certain. But the guilt is there. It is a predominant emotion, when I allow emotion to be part of the equation.
So, if you ever feel like you are being pounded by the waves from the stone tossed into my pond, let me be the first to say that I'm sorry--whether its my fault or not. By reading this, and accepting that apology, you are helping me immeasurably by helping me cope with the guilt.
As always, thank you for reading. Comments, thoughts, heck, even protests, are welcome.
--Russ.
Thursday, March 18, 2010
. . . ready, set, go.
It is my hope, by this time, that my news isn't news to those who had subscribed to this blog earlier. I have held off on restarting the blog to allow word of my relapse to spread in a more natural, less-shocking manner. If your old 'subscription' to this blog becomes your method for learning that I am again receiving treatment at Hopkins, I apologize.
So what happened? Well, I had been attempting to ignore or otherwise explain a fair amount of back pain. 2 MRIs at least called into question whether cancer might be to blame though my doctors at Hopkins were not convinced. It wasn't until my platelet levels spontaneously started dropping that Hopkins became nervous. And when Hopkins is nervous, I'm nervous.Two weeks of fairly dramatic drops in platelet levels prompted an expedited set of blood tests on Friday, March 12th followed by a bone marrow biopsy. A six hour ordeal ended in my learning that my clinically cancer-free ride had come to an end. I was given several hours to return home, talk to the kids, gather my stuff, and return to Hopkins to be admitted the same evening. I have since learned that none of the tests showed that my original Lymphoma returned--my cancer is purely Leukemia now and my marrow was roughly 90% effected. I was shocked by this number but was comforted to learn that a 90% level does not change the difficulty in treatment from a 75% or 50% level.
My path now leads toward a Bone Marrow Transplant. That was always the plan, if I relapsed. So here we go.
I can tell you the following about what is upcoming. Over the next several months things will be moving fairly slowly from my end. I will be in the hospital this time around for about a month even though my chemotherapy ends tomorrow. This is because I will not have my white blood cells kick-started for me like I did under the Hyper CVAD regimen. Instead, my blood counts will bottom out and when I recover suitably I will be allowed to return home. Home I will be (and maybe at work?) for perhaps a month until I am told to return to Hopkins for another round of chemo and final preparations for the Bone Marrow Transplant.
Marla and I have been asked frequently whether people can be tested for being a possible Bone Marrow Donor for me. The answer to this is as follows: The odds of any single person I know being an honest-to-goodness match for me is pretty slim. For that reason, the hospital does not want to spend the administrative time and costs to look individually among my friends for a match. Instead, those who might feel compelled to be a bone marrow donor should seek to get onto the bone marrow registry. Please be aware that if you do this as a means to help me, you will be putting your name on a general registry and may, one day, be a match for someone, and again, odds are that person would not be me.
My take: being a bone marrow donor would be a very noble step and I would be honored by anyone who felt compelled to take that step because of my situation. I also don't think there is any shame in fairly assessing your own willingness to go through what is currently a fairly invasive process, at an undetermined time in the future, to help a complete stranger who may be next door or on the other side of the world. My donor may come from this registry or it may be one of my parents. So clearly, without individuals who are compelled to be on the registry and then who do follow through on that 'commitment' I would have fewer options available to me.
The rest of this process commences with the transplant itself, and the follow up and recovery from that transplant will be a long, involved road.
I have heard many well-wishes, offers for help, and that my family and I are in many thoughts and prayers. It all matters and it all helps--so thank you. Please feel free to monitor the blog and comment at will. For my part, I will try to be open, honest, entertaining, and philosophical as I was before.
I got a lot out of maintaining the blogs the first time around and I believe this will help see me through this process as well . . .
As always, thanks for reading.
--Russ.
So what happened? Well, I had been attempting to ignore or otherwise explain a fair amount of back pain. 2 MRIs at least called into question whether cancer might be to blame though my doctors at Hopkins were not convinced. It wasn't until my platelet levels spontaneously started dropping that Hopkins became nervous. And when Hopkins is nervous, I'm nervous.Two weeks of fairly dramatic drops in platelet levels prompted an expedited set of blood tests on Friday, March 12th followed by a bone marrow biopsy. A six hour ordeal ended in my learning that my clinically cancer-free ride had come to an end. I was given several hours to return home, talk to the kids, gather my stuff, and return to Hopkins to be admitted the same evening. I have since learned that none of the tests showed that my original Lymphoma returned--my cancer is purely Leukemia now and my marrow was roughly 90% effected. I was shocked by this number but was comforted to learn that a 90% level does not change the difficulty in treatment from a 75% or 50% level.
My path now leads toward a Bone Marrow Transplant. That was always the plan, if I relapsed. So here we go.
I can tell you the following about what is upcoming. Over the next several months things will be moving fairly slowly from my end. I will be in the hospital this time around for about a month even though my chemotherapy ends tomorrow. This is because I will not have my white blood cells kick-started for me like I did under the Hyper CVAD regimen. Instead, my blood counts will bottom out and when I recover suitably I will be allowed to return home. Home I will be (and maybe at work?) for perhaps a month until I am told to return to Hopkins for another round of chemo and final preparations for the Bone Marrow Transplant.
Marla and I have been asked frequently whether people can be tested for being a possible Bone Marrow Donor for me. The answer to this is as follows: The odds of any single person I know being an honest-to-goodness match for me is pretty slim. For that reason, the hospital does not want to spend the administrative time and costs to look individually among my friends for a match. Instead, those who might feel compelled to be a bone marrow donor should seek to get onto the bone marrow registry. Please be aware that if you do this as a means to help me, you will be putting your name on a general registry and may, one day, be a match for someone, and again, odds are that person would not be me.
My take: being a bone marrow donor would be a very noble step and I would be honored by anyone who felt compelled to take that step because of my situation. I also don't think there is any shame in fairly assessing your own willingness to go through what is currently a fairly invasive process, at an undetermined time in the future, to help a complete stranger who may be next door or on the other side of the world. My donor may come from this registry or it may be one of my parents. So clearly, without individuals who are compelled to be on the registry and then who do follow through on that 'commitment' I would have fewer options available to me.
The rest of this process commences with the transplant itself, and the follow up and recovery from that transplant will be a long, involved road.
I have heard many well-wishes, offers for help, and that my family and I are in many thoughts and prayers. It all matters and it all helps--so thank you. Please feel free to monitor the blog and comment at will. For my part, I will try to be open, honest, entertaining, and philosophical as I was before.
I got a lot out of maintaining the blogs the first time around and I believe this will help see me through this process as well . . .
As always, thanks for reading.
--Russ.
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