Good Morning All:
I'll do better than an update today. My apologies in advance to the smokers who read my blog--this one isn't intended to sway your decision to smoke but perhaps I might be happy if it did . . .
The parking garage for the cancer center at Hopkins is located under the building itself. Its exit empties into an alleyway of sorts and leads to a traffic circle and the city streets of Baltimore. As you drive up the hill to this alley and stop to look for car or pedestrian traffic it is very hard, as a cancer patient, not to take notice of the activity across the street: more on that in a bit.
In the passenger seat in the car leaving the garage I am always wearing a mask. I have been instructed to wear that same mask in the hospital because people with viral and bacterial infections roam the hospital--a danger for me. Leaving the hospital, whether in a car or on foot, I must wear the same mask. There is construction all around the hospital and this stirs up dust, dirt and ostensibly microbes of some sort that I am to be wary of. As we drive through and out of the city I keep the mask on because city buses belch out plenty of potentially harmful fumes and the construction exposure continues until I'm about a mile or so out of the city.
. . . And so there I am in the passenger seat of the car emerging from the parking garage located under Johns Hopkins cancer center wearing my mask to prevent just about anything harmful from entering my depressed system. Across the street is always a handful of people smoking. Typically there's a person or two wearing hospital scrubs or even a doctor's white coat, others are wearing the street clothes of hospital visitors. There's a bench there and an awning for them to stand under and one of those tall tubular receptacles for cigarette butts. Its become a common quip for me to make as we wait to turn left: "Smoking outside the cancer center."
Its really only half a joke. I can't help but feel a bit down as I ponder the unfortunate irony of the same people who routinely see the worst of the worst cases of cancer being dragged by the scruff of their neck by an addiction to inflict the same damage on themselves that they struggle to treat day in and day out. I often catch the eye of someone as we drive by and I can only imagine what they think as they watch the cancer patient wearing the tell-tale mask drive by following an outpatient treatment. Is it learned indifference that keeps them lighting up? Do they doubt the research that links smoking to cancer? I just can't help but wonder.
After probably 50-100 visits to Hopkins now I decided to write this as we came home last night because I saw something there at the smokers bench that I had never seen before. There is at least one patient that I cross paths with frequently in the outpatient clinic who smokes. I've heard nurses talking about his smoking habits and how all have tried to counsel him to give up the habit. Sometimes they'll be looking for him and he'll have disappeared and they naturally wonder/worry that he's outside smoking. I believe that I've seen him there among the smokers on at least one occasion dressed in his street clothes.
Last night, however, as we turned left into the alley there he was crossing the street in front of us. He was an inpatient this time--betrayed by his hospital gown, wheeled IV Pole with tubes leading from bag to body, slippers, and the ever present mask. He had a coat on over his gown and a stocking cap on his bald head but he still looked cold. This time as I watched him lift the IV Pole over the curb I had to wonder what the other smokers were thinking. If I envisioned myself with my mask as a stark reminder of what was possible. What was this guy's presence going to be for the rest of the smokers? How could it be possible to ignore such a sight?
And for the patient, other questions arose. Why wear the mask at all? It can't be because he wants to follow doctor's instructions in an effort to keep matters from getting worse. How must he feel as he makes that trek? I have to assume that it feels much like he's being led to the gallows as he wanders through the hospital to do more of the same damage that probably led to his hospital admission in the first place. Does he ever question just how much effort his care team is willing to give his case if he seems unable to change this habit and simply undoes the work done by his doctors and nurses? I know I questioned that very thing last night.
In the past I have viewed the smoking habits of others as largely none of my business unless they were blowing smoke in my face. Even then I was probably more tolerant than most. While I still am not a likely person to launch a crusade against smoking or to counsel smokers at length about the damage they are doing to themselves something has changed for me. I now know what the treatment of cancer entails. I've seen patients in very rough shape, skin-and-bones terminal cases, and very young adults and children who don't have the strength to walk out of the hospital. I know what it feels like, first hand, to put just about everything in life on hold to receive treatment and to have the constant worry about whether the treatment is working. These are sights and experiences that I would not wish on anyone and would be likely to crusade against.
The sight of the cancer patient crossing the street last night brought into stark reality for me the intersection of smoking and cancer and the confounding, ironic grip that addiction has on those who smoke outside the cancer center.
Friday, January 30, 2009
Thursday, January 29, 2009
Update
Good Afternoon All:
I'm writing from Hopkins today. I'm here as an outpatient and today is one of the few times where I am happy to be here instead of at home. My last appointment was Tuesday as the snow was starting to fall and the weather reports were sounding pretty grim. My blood counts then showed I was closing in on the need for a blood transfusion but hadn't crossed the threshold yet. So, they sent me home without a transfusion on Tuesday and we beat the weather.
However, by this AM I was pretty wiped out. When I need a transfusion I get winded just having a phone conversation or going up/down stairs. This morning I needed to sit down a while after taking a shower!
I came into the outpatient clinic pretty much announcing that they would be giving me blood and on my say so started the process of ordering a pint of A-positive for me. I'm receiving that pint now and will get another and probably a bag of platelets too. It'll be a long day but I suspect that I'll feel quite a bit different when I go to bed tonight than I did when I woke up--and that's a good thing.
These counts dropping are normal not any cause for alarm. I suspect that my white blood cells should be plummeting soon as well. Once this happens and I recover we'll be on the way to round 7!
--Russ.
I'm writing from Hopkins today. I'm here as an outpatient and today is one of the few times where I am happy to be here instead of at home. My last appointment was Tuesday as the snow was starting to fall and the weather reports were sounding pretty grim. My blood counts then showed I was closing in on the need for a blood transfusion but hadn't crossed the threshold yet. So, they sent me home without a transfusion on Tuesday and we beat the weather.
However, by this AM I was pretty wiped out. When I need a transfusion I get winded just having a phone conversation or going up/down stairs. This morning I needed to sit down a while after taking a shower!
I came into the outpatient clinic pretty much announcing that they would be giving me blood and on my say so started the process of ordering a pint of A-positive for me. I'm receiving that pint now and will get another and probably a bag of platelets too. It'll be a long day but I suspect that I'll feel quite a bit different when I go to bed tonight than I did when I woke up--and that's a good thing.
These counts dropping are normal not any cause for alarm. I suspect that my white blood cells should be plummeting soon as well. Once this happens and I recover we'll be on the way to round 7!
--Russ.
Monday, January 26, 2009
Something a little more light-hearted
Good Morning All:
As I watch a little bit of unexpected snow drift down this morning I thought I'd share a little bit of news that is less weighty than blood counts, hospital delays, chemotherapy . . .
We're talking hair. I have to admit that I've gotten a little used to not having any hair on my head though the feeling of the warmth escaping from my scalp continues to be uncomfortable and is the primary reason that I don't tend to simply walk around bald. I also have started to joke about it with my primary foil being Audrey. Last night, for example, she was trying to put Marla's hair in a pony tail and I invited her to do my hair next. She thought that was very, very funny and so did I.
While I've been assured that it means nothing by the doctors I'd like to announce that my nice clean shave has come to an end however. One of the actual benefits of having chemo was that for a time I had no facial hair and none growing. I had a nice smooth shave without any of the daily activities to make it so. About 3 weeks ago that ended. I looked in the mirror one morning and there was a blonde(I'm claiming blonde) beard growing around my nose and mouth. I actually had to shave! My facial hair is back, oddly enough, though it grows more slowly than it did prior to the chemotherapy and it is no longer blonde but the dark brown it had always been.
Marla also pointed out last night that my eyelashes are growing back. This actually strikes me as a little odd as they haven't really been gone that long. I think I noticed them falling out in earnest just a bit before the beard reappeared.
In any event, I'm assured that there is little to be read in the comings and goings of hair for the chemotherapy patient. I choose, however, to see these as a minor sign of the change in my focus from treatment to maintenance. After all, just because we can't explain how or why these things occur does not mean that they are unimportant or without cause.
Finally, since I've been diagnosed my co-worker Marie has been asking for a limerick. It is a lesser-known factoid that I've got a penchant for writing limericks when something strikes me as funny. There hasn't been much to write limericks about thus far but I think we'll give it a go on this topic:
The Returning Facial Hair Limerick
With no beard or eyelashes flowing
and the hair on his head not growing
Russ looks at his stubble
and begins to mumble--
I can't tell if its coming or going!
--Russ.
As I watch a little bit of unexpected snow drift down this morning I thought I'd share a little bit of news that is less weighty than blood counts, hospital delays, chemotherapy . . .
We're talking hair. I have to admit that I've gotten a little used to not having any hair on my head though the feeling of the warmth escaping from my scalp continues to be uncomfortable and is the primary reason that I don't tend to simply walk around bald. I also have started to joke about it with my primary foil being Audrey. Last night, for example, she was trying to put Marla's hair in a pony tail and I invited her to do my hair next. She thought that was very, very funny and so did I.
While I've been assured that it means nothing by the doctors I'd like to announce that my nice clean shave has come to an end however. One of the actual benefits of having chemo was that for a time I had no facial hair and none growing. I had a nice smooth shave without any of the daily activities to make it so. About 3 weeks ago that ended. I looked in the mirror one morning and there was a blonde(I'm claiming blonde) beard growing around my nose and mouth. I actually had to shave! My facial hair is back, oddly enough, though it grows more slowly than it did prior to the chemotherapy and it is no longer blonde but the dark brown it had always been.
Marla also pointed out last night that my eyelashes are growing back. This actually strikes me as a little odd as they haven't really been gone that long. I think I noticed them falling out in earnest just a bit before the beard reappeared.
In any event, I'm assured that there is little to be read in the comings and goings of hair for the chemotherapy patient. I choose, however, to see these as a minor sign of the change in my focus from treatment to maintenance. After all, just because we can't explain how or why these things occur does not mean that they are unimportant or without cause.
Finally, since I've been diagnosed my co-worker Marie has been asking for a limerick. It is a lesser-known factoid that I've got a penchant for writing limericks when something strikes me as funny. There hasn't been much to write limericks about thus far but I think we'll give it a go on this topic:
The Returning Facial Hair Limerick
With no beard or eyelashes flowing
and the hair on his head not growing
Russ looks at his stubble
and begins to mumble--
I can't tell if its coming or going!
--Russ.
Sunday, January 25, 2009
Update
Good Morning All:
I'm finally going home from round 6 today. This one seemed particularly long because, well, it was. For a B-cycle treatment this one spanned about as much time as it could and so I am now very eager to return home to the wife and kids.
We knew when I came in on Wednesday for an out-patient blood check that if all were in order they would try to admit me. As it turns out this became possible and so I stayed.
But there were delays in getting started and resulting timing issues throughout this stay that resulted in a normally three day cycle keeping me here beyond 5 days--sigh. Just glad to have it behind me and to be on the verge of going home.
Positive notes: Round 6's hospital stay can be crossed off the list as can spinal tap number 10. I still feel good and strong and upbeat (when I'm not grousing about hospital food)--and to the best of anyone's knowledge still cancer-free.
--Russ.
I'm finally going home from round 6 today. This one seemed particularly long because, well, it was. For a B-cycle treatment this one spanned about as much time as it could and so I am now very eager to return home to the wife and kids.
We knew when I came in on Wednesday for an out-patient blood check that if all were in order they would try to admit me. As it turns out this became possible and so I stayed.
But there were delays in getting started and resulting timing issues throughout this stay that resulted in a normally three day cycle keeping me here beyond 5 days--sigh. Just glad to have it behind me and to be on the verge of going home.
Positive notes: Round 6's hospital stay can be crossed off the list as can spinal tap number 10. I still feel good and strong and upbeat (when I'm not grousing about hospital food)--and to the best of anyone's knowledge still cancer-free.
--Russ.
Thursday, January 22, 2009
Running through the bag
Good Morning All:
So, I woke up this AM at Hopkins. My platelet counts crept above the minimum threshold yesterday and they scrambled to put me in a room. So here we go--good to keep this moving into round 6 of 8!
Since I received the positive news on the bone marrow and CT scans I've noticed a very real shift in my perception of these hospital visits. In the early rounds I was carried to outpatient appointments and inpatient stays by a very clear sense of purpose that was fueled by the immediate threat of the spread of cancer. While it is eerie to use words with positive connotations to describe it, the uniqueness or adventure of undergoing treatment kept me moving.
Now that the cancer has been beaten back I'm left to finish out the treatment and start a 2 year maintenance program to keep it away. This is no longer a sprint to get me out of danger but an endurance race to long-term health and I need to shift my attitude accordingly. What is required of me now conjures up a lesson I learned in little league baseball and struggled to teach my team last year. . .
Many who have not played baseball may not be aware that after a runner hits the ball they are able to run beyond first base after touching it--we call this 'running through the bag'. The benefit of doing this is that the runner does not need to slow down in order to come to a stop on the base itself. Instead they can use their full speed to get to the base and beyond in the hopes of being safe at first and to have the ability to continue around the bases to ultimately score a run for their team.
My 7 and 8 year olds last year practiced running through the bag at each practice. They loved to run and it was a good fundamental lesson for them to learn. But they never really translated that practice to the game. Once they put on their baggy uniforms and big batting helmets they would forget to run through the bag and come to a slow stop on first base after successfully hitting the ball. I guess I know one drill we'll continue into this season!
Running through the bag has long been a personal analogy of mine for seeing thing through to the end in the proper way. Doing this is not easy to learn, seems counterintuitive at times, and requires establishing a new habit for one's self. In short, there are many who never learn it and plenty of times where those who have learned to run through the bag simply neglect to do it.
Of course, now is not the time for me to short change myself or my family by giving any less to the recovery/health effort. So, with the great start up the first base line that I've gotten I only need to keep running hard, touch the base and continue on.
--Russ.
So, I woke up this AM at Hopkins. My platelet counts crept above the minimum threshold yesterday and they scrambled to put me in a room. So here we go--good to keep this moving into round 6 of 8!
Since I received the positive news on the bone marrow and CT scans I've noticed a very real shift in my perception of these hospital visits. In the early rounds I was carried to outpatient appointments and inpatient stays by a very clear sense of purpose that was fueled by the immediate threat of the spread of cancer. While it is eerie to use words with positive connotations to describe it, the uniqueness or adventure of undergoing treatment kept me moving.
Now that the cancer has been beaten back I'm left to finish out the treatment and start a 2 year maintenance program to keep it away. This is no longer a sprint to get me out of danger but an endurance race to long-term health and I need to shift my attitude accordingly. What is required of me now conjures up a lesson I learned in little league baseball and struggled to teach my team last year. . .
Many who have not played baseball may not be aware that after a runner hits the ball they are able to run beyond first base after touching it--we call this 'running through the bag'. The benefit of doing this is that the runner does not need to slow down in order to come to a stop on the base itself. Instead they can use their full speed to get to the base and beyond in the hopes of being safe at first and to have the ability to continue around the bases to ultimately score a run for their team.
My 7 and 8 year olds last year practiced running through the bag at each practice. They loved to run and it was a good fundamental lesson for them to learn. But they never really translated that practice to the game. Once they put on their baggy uniforms and big batting helmets they would forget to run through the bag and come to a slow stop on first base after successfully hitting the ball. I guess I know one drill we'll continue into this season!
Running through the bag has long been a personal analogy of mine for seeing thing through to the end in the proper way. Doing this is not easy to learn, seems counterintuitive at times, and requires establishing a new habit for one's self. In short, there are many who never learn it and plenty of times where those who have learned to run through the bag simply neglect to do it.
Of course, now is not the time for me to short change myself or my family by giving any less to the recovery/health effort. So, with the great start up the first base line that I've gotten I only need to keep running hard, touch the base and continue on.
--Russ.
Tuesday, January 20, 2009
Platelets are dragging
Good Inauguration Morning All:
First of all, congratulations are in order to Brian Reeve and his wife Stephanie on the birth of their third child last night. Brian is training to run in the Leukemia Lymphoma Societies half marathon. A link to his fund raising site appears on both the Blogger and Caringbridge blogs. Can you imagine getting up at the crack of dawn feeding and changing the baby THEN getting up to run 7 miles?! Brian deserves your support (on the fund raising--he's on his own with the diapers).
An update from yesterday . . . my platelets are on the same slow boat that they had been on in prior rounds. I needed to recover to the 60,000 or 100,000 level in order to receive treatment. I was at 45,000 on Friday last week. My counts yesterday showed only a modest improvement to 49,000. The current plan is to have me recover for a couple more days and return on Wednesday with an overnight bag packed. If I'm able to hit the magic number then I may be admitted on the spot. Otherwise, I'll return home to make more platelets--however one accomplishes that.
I'm still ahead of schedule despite this delay so I'm generally upbeat and looking forward to today's festivities which I'll be sharing with Audrey and Nolan.
--Russ.
First of all, congratulations are in order to Brian Reeve and his wife Stephanie on the birth of their third child last night. Brian is training to run in the Leukemia Lymphoma Societies half marathon. A link to his fund raising site appears on both the Blogger and Caringbridge blogs. Can you imagine getting up at the crack of dawn feeding and changing the baby THEN getting up to run 7 miles?! Brian deserves your support (on the fund raising--he's on his own with the diapers).
An update from yesterday . . . my platelets are on the same slow boat that they had been on in prior rounds. I needed to recover to the 60,000 or 100,000 level in order to receive treatment. I was at 45,000 on Friday last week. My counts yesterday showed only a modest improvement to 49,000. The current plan is to have me recover for a couple more days and return on Wednesday with an overnight bag packed. If I'm able to hit the magic number then I may be admitted on the spot. Otherwise, I'll return home to make more platelets--however one accomplishes that.
I'm still ahead of schedule despite this delay so I'm generally upbeat and looking forward to today's festivities which I'll be sharing with Audrey and Nolan.
--Russ.
Sunday, January 18, 2009
Update
Good Morning All:
Probably the biggest news that I've got to share is that I've got no real news to share. The good news of the past week-or-so continues to dominate our thoughts and actions. During the week my blood counts crashed and recovered so that I have a weekend with the kids where I can follow them where they go. That meant I got to run to gymnastics yesterday and we had a nice gathering last night at a friend's house.
My platelets were casualties in the crash/recovery process so those will need to come up naturally before round 6 begins. We are hoping that this is happening now and that my check of blood counts on Monday will reveal that I am in position to be admitted on Wednesday--several days early by my count!
--Russ.
Probably the biggest news that I've got to share is that I've got no real news to share. The good news of the past week-or-so continues to dominate our thoughts and actions. During the week my blood counts crashed and recovered so that I have a weekend with the kids where I can follow them where they go. That meant I got to run to gymnastics yesterday and we had a nice gathering last night at a friend's house.
My platelets were casualties in the crash/recovery process so those will need to come up naturally before round 6 begins. We are hoping that this is happening now and that my check of blood counts on Monday will reveal that I am in position to be admitted on Wednesday--several days early by my count!
--Russ.
Thursday, January 15, 2009
Update from yesterday's meeting
Goodmorning All:
Figured I would provide a brief update (and not the answers to all 30 questions I managed to get answered!) from yesterday's meeting with my primary doctor at Hopkins.
I didn't anticipate that I would come away with much new information about my diagnosis/prognosis etc. I've pretty well researched that as much as I care to at this moment. I did learn a bit more about the difference between Acute Lymphoblastic Lymphoma versus the more common diagnosis with the same initials--Acute Lymphoblastic Leukemia or ALL. I had thought the difference was the advancement of the disease into the bone marrow. Where my marrow was marginally affected (less than 25%) at the time I began treatment I believe I had read somewhere that had it gone above the 25% mark I would have been diagnosed with ALL. As Dr. Connolly explained yesterday, however, it is more of a chicken-and-the-egg sort of thing. The current thinking on the difference is the genesis of the disease. Did it start in the lymph nodes (where the primary infection was in me)? Then its Lymphoma. If it is in the marrow and blood (with little or no infection in the lymph nodes, normally) then it is Leukemia. Hardly matters much as the treatment regimen for both is the same.
The best news is that my 8 treatments are pretty much it for hard core treatment. There is talk of possibly using a new practice of a radiation treatment regimen on the lymph nodes in my chest just to make sure we're pushing the cancer cells over the edge--but that all needs to be weighed and discussed. Otherwise, my dresser-top full of pills will be replaced by three pill bottles with only one pill being needed every day. My inpatient trips to Hopkins will end after round 8. My outpatient trips to Hopkins will be limited to some intermittent follow ups to be certain that I'm not having lingering proneness to infection following the chemo regimen and then will dwindle to one outpatient visit every 3 months. I'm still on track then to return to work in some form by mid-March once the blood counts recover from round 8!
My Hickman catheter which limits my physical activity, my showering habits, requires Marla's new found nursing skilss most evenings, and is an annoying daily reminder of all that I am enduring will be able to come out soon after round 8 (once we determine that I'm beyond risk of needing intense infection treatment or something that could still use the catheter instead of a traditional IV).
I've been cleared to my satisfaction that I will meet my goal of coaching Nolan's baseball team and I've already made that commitment to the team in an e-mail last night. Additionally, it seems that with my Hickman likely able to come out in late March or early April, my ability to actually PLAY baseball seems that much more probable.
The risk of infection ends following round 8 so I'll be able to eat any food I like, be around people, go to sporting events, movies, the mall, when I choose. We'll also be able to start thinking about a puppy to replace our dearly departed Bungo.
I think Marla put it best on the way home yesterday when she said that, by comparison, what awaits us after round 8 seems almost like Club Med.
I do still need to point out the stark reality that while cancer seems to have left my body the yeoman's work will continue for YEARS after round 8 to ensure that it does not come back. The odds of relapse (at least looking at some somewhat dated reports) are not insignificant and so I will remain in some form of treatment for another 2 years.
In all, it is nice to shift the focus of my eyes from where I stand today to somewhere further on the horizon. Right now we're looking squarely at the next several months while taking peeks at the next 2 years. Marla has instructed me that, at 36, I'm committed to another 49 years--putting me at 85. I guess I'd better get my head up a little further . . .
Figured I would provide a brief update (and not the answers to all 30 questions I managed to get answered!) from yesterday's meeting with my primary doctor at Hopkins.
I didn't anticipate that I would come away with much new information about my diagnosis/prognosis etc. I've pretty well researched that as much as I care to at this moment. I did learn a bit more about the difference between Acute Lymphoblastic Lymphoma versus the more common diagnosis with the same initials--Acute Lymphoblastic Leukemia or ALL. I had thought the difference was the advancement of the disease into the bone marrow. Where my marrow was marginally affected (less than 25%) at the time I began treatment I believe I had read somewhere that had it gone above the 25% mark I would have been diagnosed with ALL. As Dr. Connolly explained yesterday, however, it is more of a chicken-and-the-egg sort of thing. The current thinking on the difference is the genesis of the disease. Did it start in the lymph nodes (where the primary infection was in me)? Then its Lymphoma. If it is in the marrow and blood (with little or no infection in the lymph nodes, normally) then it is Leukemia. Hardly matters much as the treatment regimen for both is the same.
The best news is that my 8 treatments are pretty much it for hard core treatment. There is talk of possibly using a new practice of a radiation treatment regimen on the lymph nodes in my chest just to make sure we're pushing the cancer cells over the edge--but that all needs to be weighed and discussed. Otherwise, my dresser-top full of pills will be replaced by three pill bottles with only one pill being needed every day. My inpatient trips to Hopkins will end after round 8. My outpatient trips to Hopkins will be limited to some intermittent follow ups to be certain that I'm not having lingering proneness to infection following the chemo regimen and then will dwindle to one outpatient visit every 3 months. I'm still on track then to return to work in some form by mid-March once the blood counts recover from round 8!
My Hickman catheter which limits my physical activity, my showering habits, requires Marla's new found nursing skilss most evenings, and is an annoying daily reminder of all that I am enduring will be able to come out soon after round 8 (once we determine that I'm beyond risk of needing intense infection treatment or something that could still use the catheter instead of a traditional IV).
I've been cleared to my satisfaction that I will meet my goal of coaching Nolan's baseball team and I've already made that commitment to the team in an e-mail last night. Additionally, it seems that with my Hickman likely able to come out in late March or early April, my ability to actually PLAY baseball seems that much more probable.
The risk of infection ends following round 8 so I'll be able to eat any food I like, be around people, go to sporting events, movies, the mall, when I choose. We'll also be able to start thinking about a puppy to replace our dearly departed Bungo.
I think Marla put it best on the way home yesterday when she said that, by comparison, what awaits us after round 8 seems almost like Club Med.
I do still need to point out the stark reality that while cancer seems to have left my body the yeoman's work will continue for YEARS after round 8 to ensure that it does not come back. The odds of relapse (at least looking at some somewhat dated reports) are not insignificant and so I will remain in some form of treatment for another 2 years.
In all, it is nice to shift the focus of my eyes from where I stand today to somewhere further on the horizon. Right now we're looking squarely at the next several months while taking peeks at the next 2 years. Marla has instructed me that, at 36, I'm committed to another 49 years--putting me at 85. I guess I'd better get my head up a little further . . .
Wednesday, January 14, 2009
A newfound aversion to data . . .
Good Morning All:
Before I get started I posted a picture that was taken from my Mom's camera while I was doing my last post. I get a big reaction to the pictures so I figured I'd post it. Aside from me looking bored it is a pretty good picture. I think you will all agree I am still not frail and looking pretty hale and healthy. For Blogger readers, I edited the prior post to include the picture. For Caringbridge reader I added the picture to the 'pictures' section next to the one with me and Santa.
This afternoon Marla and I travel back to Hopkins to meet with Dr. Connolly. This meeting is a follow up to the positive test results that I've been able to report recently and shifts, in my mind, the focus from the here-and-now to the what's-next.
As I've mentioned in prior posts this is a sort of anxiety-laden process as I am going from a patient who is being closely monitored to one that is being released back into the cruel, cruel world eventually to experience come-what-may. I suppose it is akin to that first big push while learning to ride a bike or landing your first plane.
As I lay awake at 3:30 this morning thinking about today's meeting and attending to the questions flooding my head I was drawn back to the information I read in a couple of articles dealt with my diagnosis and the treatment regimen that I am on. I thought, on one hand, that I might share some of that information in a blog post--perhaps even today's. But, I scrapped that idea and here's why:
We've all heard that we need to be educated consumers of information on the internet. While typically that refers to trusting fully the sorts of things we read on Wikipedia, for a patient facing a serious illness like cancer there is a commensurate amount of information to match the demand for information. With all there is to wade through, scientific, opinion, and the ever-present, well-disguised sales pitch for miracle drugs one can be mislead by misinformation or mired in irrelevant information.
The irrelevant information is harder to discern because it is often reported in those sources we might otherwise come to trust--the scientific. It took me some time to relearn (as it was part of graduate education) that just because it is reported in a scientific journal and it is data, what I read may not have any relevance to me. I believe this is broadly true when it comes to the data one might read on cancer statistics and know it to be true for my specific diagnosis. What gets reported in these articles are often the results of clinical trials or are meta analyses based on 'linkable' data. The more complete and more predictive these data are the better able they will be able to serve as a crystal ball for what may happen with me.
Clinical trials themselves struggle to rise to this level of long term predictive value because the sample sizes are based on the need to prove that a drug, or drug regimen, serves as improvement over existing treatment options. This includes some measure of sustained improvement but I'm looking for a crystal ball that looks out over the decades--not to 5-year survivability statistics. Additionally, while the teams that collect these data may continue to collect survival rates, they are also always seeking improved treatments and other trials to conduct. As such, the focus changes and the long-term collection of data may be either stunted, abandoned, or at the very least, lost amidst the discussion of the next best treatment option.
To provide an example of what I mean I can hearken to some of the lessons I learned when I exposed myself to these sorts of articles last time. I know that several of my 'experiences' point to an increased likelihood of a prolonged remission/cure. Apparently, the existence (and obviously, cure) of a mass in my chest is correlated with better survival rates. Additionally, so is my quick response to treatment. However, my age is just over the threshold for being a negative factor. I was 35 when diagnosed and turned 36 just after my first hospital admission. I didn't like to learn of any 'detractors' when it comes to long term survivability and I stewed over this information for quite some time (though it was more disturbing that everything ended with a 5-year horizon--"Hey we got you to 5 years, success!"). It wasn't until I put in perspective that the 34 year-olds were lumped in with the 22 year-olds (or something like that), and the 35 year-olds were lumped in with the 50 year-olds (or something like that), that I realized that there was at least room for question. Certainly, finer factor analysis is possible though in the sample sizes often reported in clinical trials we would quickly get into small sample sizes and the flakiness of data that comes along with them.
Since I felt strong, healthy, upbeat, and young coming into this process and continue to feel this way during the process I have decided to ignore that 'detractor'. Heck, my WII Fit age (sort of a fitness level measure equated to 'age') once dipped below 30--that's got to count for something?! So, this brings up the larger issue and the reason that I will not be revisiting those articles any time soon. While the information they provide is important for me to know, understand, digest, as part of being an active participant in my own treatment, it is also important to the patient to know and understand that the number of factors involved in long term survivability of ALL (the lymphoma version included, and I'm sure other cancers and illnesses as well) hinge on so many factors, many of which are unknown or only suspected at this time, that it is impossible to read an article and get a sense of where one stands. Despite what is possible via statistical analysis, it would be a tall order to expect the author of a scientific journal to adequately discuss his/her positive finding in an effective manner AND for them to try and tease apart and discuss effectively all possible permutations of these factors and what they might mean for long term survivability (assuming long term data exists at all).
As a result I have decided that I need to lean on the artistic side of the cancer treatment process. There is a reason one makes the trek to top medical institutions such as Hopkins or enrolls in a clinical trial (I have not enrolled in a clinical trial to date, by the way) and it is to avail oneself to the expertise of the physicians who have seen the permutations of factors and have the exposure to the number of cases necessary to have 'suspicions' about the as yet unconfirmed factors to long term survivability. Their data is experiential and when one is interested in something a bit more 'concrete' than a 5-year survivability rate, this is where he/she must turn.
This is the foundation of the long list of questions I have for my meeting with Dr. Connolly today. I'll be curious to know just how far she'll indulge me in my roundabout effort to unravel her 'artistic' interpretation of my case.
Before I get started I posted a picture that was taken from my Mom's camera while I was doing my last post. I get a big reaction to the pictures so I figured I'd post it. Aside from me looking bored it is a pretty good picture. I think you will all agree I am still not frail and looking pretty hale and healthy. For Blogger readers, I edited the prior post to include the picture. For Caringbridge reader I added the picture to the 'pictures' section next to the one with me and Santa.
This afternoon Marla and I travel back to Hopkins to meet with Dr. Connolly. This meeting is a follow up to the positive test results that I've been able to report recently and shifts, in my mind, the focus from the here-and-now to the what's-next.
As I've mentioned in prior posts this is a sort of anxiety-laden process as I am going from a patient who is being closely monitored to one that is being released back into the cruel, cruel world eventually to experience come-what-may. I suppose it is akin to that first big push while learning to ride a bike or landing your first plane.
As I lay awake at 3:30 this morning thinking about today's meeting and attending to the questions flooding my head I was drawn back to the information I read in a couple of articles dealt with my diagnosis and the treatment regimen that I am on. I thought, on one hand, that I might share some of that information in a blog post--perhaps even today's. But, I scrapped that idea and here's why:
We've all heard that we need to be educated consumers of information on the internet. While typically that refers to trusting fully the sorts of things we read on Wikipedia, for a patient facing a serious illness like cancer there is a commensurate amount of information to match the demand for information. With all there is to wade through, scientific, opinion, and the ever-present, well-disguised sales pitch for miracle drugs one can be mislead by misinformation or mired in irrelevant information.
The irrelevant information is harder to discern because it is often reported in those sources we might otherwise come to trust--the scientific. It took me some time to relearn (as it was part of graduate education) that just because it is reported in a scientific journal and it is data, what I read may not have any relevance to me. I believe this is broadly true when it comes to the data one might read on cancer statistics and know it to be true for my specific diagnosis. What gets reported in these articles are often the results of clinical trials or are meta analyses based on 'linkable' data. The more complete and more predictive these data are the better able they will be able to serve as a crystal ball for what may happen with me.
Clinical trials themselves struggle to rise to this level of long term predictive value because the sample sizes are based on the need to prove that a drug, or drug regimen, serves as improvement over existing treatment options. This includes some measure of sustained improvement but I'm looking for a crystal ball that looks out over the decades--not to 5-year survivability statistics. Additionally, while the teams that collect these data may continue to collect survival rates, they are also always seeking improved treatments and other trials to conduct. As such, the focus changes and the long-term collection of data may be either stunted, abandoned, or at the very least, lost amidst the discussion of the next best treatment option.
To provide an example of what I mean I can hearken to some of the lessons I learned when I exposed myself to these sorts of articles last time. I know that several of my 'experiences' point to an increased likelihood of a prolonged remission/cure. Apparently, the existence (and obviously, cure) of a mass in my chest is correlated with better survival rates. Additionally, so is my quick response to treatment. However, my age is just over the threshold for being a negative factor. I was 35 when diagnosed and turned 36 just after my first hospital admission. I didn't like to learn of any 'detractors' when it comes to long term survivability and I stewed over this information for quite some time (though it was more disturbing that everything ended with a 5-year horizon--"Hey we got you to 5 years, success!"). It wasn't until I put in perspective that the 34 year-olds were lumped in with the 22 year-olds (or something like that), and the 35 year-olds were lumped in with the 50 year-olds (or something like that), that I realized that there was at least room for question. Certainly, finer factor analysis is possible though in the sample sizes often reported in clinical trials we would quickly get into small sample sizes and the flakiness of data that comes along with them.
Since I felt strong, healthy, upbeat, and young coming into this process and continue to feel this way during the process I have decided to ignore that 'detractor'. Heck, my WII Fit age (sort of a fitness level measure equated to 'age') once dipped below 30--that's got to count for something?! So, this brings up the larger issue and the reason that I will not be revisiting those articles any time soon. While the information they provide is important for me to know, understand, digest, as part of being an active participant in my own treatment, it is also important to the patient to know and understand that the number of factors involved in long term survivability of ALL (the lymphoma version included, and I'm sure other cancers and illnesses as well) hinge on so many factors, many of which are unknown or only suspected at this time, that it is impossible to read an article and get a sense of where one stands. Despite what is possible via statistical analysis, it would be a tall order to expect the author of a scientific journal to adequately discuss his/her positive finding in an effective manner AND for them to try and tease apart and discuss effectively all possible permutations of these factors and what they might mean for long term survivability (assuming long term data exists at all).
As a result I have decided that I need to lean on the artistic side of the cancer treatment process. There is a reason one makes the trek to top medical institutions such as Hopkins or enrolls in a clinical trial (I have not enrolled in a clinical trial to date, by the way) and it is to avail oneself to the expertise of the physicians who have seen the permutations of factors and have the exposure to the number of cases necessary to have 'suspicions' about the as yet unconfirmed factors to long term survivability. Their data is experiential and when one is interested in something a bit more 'concrete' than a 5-year survivability rate, this is where he/she must turn.
This is the foundation of the long list of questions I have for my meeting with Dr. Connolly today. I'll be curious to know just how far she'll indulge me in my roundabout effort to unravel her 'artistic' interpretation of my case.
Monday, January 12, 2009
The end of rock stardom
After Thursday's eventful news I've been wondering what to write next. For all the hoopla of last week's revelation, there is still the business of getting through the full 8 cycles of treatment. Today, I arrived unceremoniously at the outpatient center at Hopkins and went through the same rituals of blood tests, a pending blood transfusion (as I write this), and waiting, waiting, waiting.
I did receive word that my remaining 3 spinal taps will be spread over the remaining treatment cycles. I'm happy for the temporary reprieve in needing to endure another one in the coming days.
Otherwise, its another day at Hopkins and I'm not nearly the cancer patient/rock star today that I have been since late last week. "Keep marching soldier. The front is that way."
I did receive word that my remaining 3 spinal taps will be spread over the remaining treatment cycles. I'm happy for the temporary reprieve in needing to endure another one in the coming days.
Otherwise, its another day at Hopkins and I'm not nearly the cancer patient/rock star today that I have been since late last week. "Keep marching soldier. The front is that way."
Friday, January 9, 2009
On the beaches of Sicily
I've just finished making my through a book on what I suppose might be the Mediterranean theater of WWII. The book focused on the US efforts in North Africa and Italy all leading up to the allied invasion of Normandy.
What struck me as I read the accounts of the early battles was just how steep and important the learning curve was for the US forces, and even more notably, how complicated. Each time the US hopped from continent to continent to establish a new front against the Germans there was a need to 'come ashore'. Infantry and tanks were packed into boats and deposited on the beach. So much care and planning was taken to try and make certain that the troops could just overcome the odds enough to get to that point--establishing a beach head. It was very evident from the portrayal I was reading, that failure on this point rendered consideration of any other operations moot.
Late yesterday afternoon I received a call from Doctor Connolly. I had almost forgotten that she owed me some news and before I could even register who was on the phone with me she had alerted me that my bone marrow biopsy had come back CLEAN! The sense of relief I felt at that realization was something so unique to me that I won't soon forget it. After confirming with her what I was hearing I hung up the phone I did an embarrassing jig or two, let out a yell and set about calling family. Needless to say we are all relieved and overjoyed to get this news--between the CT Scan results and the bone marrow biopsy I could not have asked for a better outcome for the results of just half of my treatment protocol.
Wiping out the cancer from my lymph nodes and my bone marrow is like hitting the beaches of Sicily (in WWII, not today, I assure you). So much energy, thought, planning, and effort has gone into making that happen that in hindsight it almost seems now like success was a foregone conclusion. But what if . . .
I'd like to thank everyone who has done anything to sustain my family and I throughout this. We have not had nearly the opportunities to say thank you as we'd like and so we are left to hope that all of you know how thankful we are. Even more importantly, I'd like to invite you all to keep up with me on my blogs. My clean scans are a start, not an end. For all who have remarked on my spirit or attitude, understand that I have drawn considerably from the influence of those around me.
And so now we've landed--the work isn't done and the battle, let alone the war, is not over. I've got three more rounds of chemo to pour into my system and between now and then the team at Hopkins, my family, and I will work on the remaining steps to make certain that cancer does not return.
So now that we're standing on the beaches of Sicily, who's going inland with me?
--Russ.
What struck me as I read the accounts of the early battles was just how steep and important the learning curve was for the US forces, and even more notably, how complicated. Each time the US hopped from continent to continent to establish a new front against the Germans there was a need to 'come ashore'. Infantry and tanks were packed into boats and deposited on the beach. So much care and planning was taken to try and make certain that the troops could just overcome the odds enough to get to that point--establishing a beach head. It was very evident from the portrayal I was reading, that failure on this point rendered consideration of any other operations moot.
Late yesterday afternoon I received a call from Doctor Connolly. I had almost forgotten that she owed me some news and before I could even register who was on the phone with me she had alerted me that my bone marrow biopsy had come back CLEAN! The sense of relief I felt at that realization was something so unique to me that I won't soon forget it. After confirming with her what I was hearing I hung up the phone I did an embarrassing jig or two, let out a yell and set about calling family. Needless to say we are all relieved and overjoyed to get this news--between the CT Scan results and the bone marrow biopsy I could not have asked for a better outcome for the results of just half of my treatment protocol.
Wiping out the cancer from my lymph nodes and my bone marrow is like hitting the beaches of Sicily (in WWII, not today, I assure you). So much energy, thought, planning, and effort has gone into making that happen that in hindsight it almost seems now like success was a foregone conclusion. But what if . . .
I'd like to thank everyone who has done anything to sustain my family and I throughout this. We have not had nearly the opportunities to say thank you as we'd like and so we are left to hope that all of you know how thankful we are. Even more importantly, I'd like to invite you all to keep up with me on my blogs. My clean scans are a start, not an end. For all who have remarked on my spirit or attitude, understand that I have drawn considerably from the influence of those around me.
And so now we've landed--the work isn't done and the battle, let alone the war, is not over. I've got three more rounds of chemo to pour into my system and between now and then the team at Hopkins, my family, and I will work on the remaining steps to make certain that cancer does not return.
So now that we're standing on the beaches of Sicily, who's going inland with me?
--Russ.
Tuesday, January 6, 2009
A hodge-podge of updates
Good Morning all:
Before I get into my boring updates I want to alert my readership to another fundraising activity for the Leukemia and Lyphoma Society (my newfound favorite charity). A friend of mine has entered himself into a half-marathon (as long as he doesn't expect me to pick up the slack on the other half!). Please feel free to visit Brian's donation site: http://pages.teamintraining.org/nca/shamrock09/breeve To borrow from his thinkning, if I can weather the chemo and he can get up to run a few miles perhaps the readers of my blogs can band together to make contributions that will make a difference in finding a cure. Thank you for your efforts, Brian and I'm touched that my situation serves in part as rationale for undertaking this effort.
Moving into the more mundane updates to treatment . . .Let me start by announcing that I'll be having spinal tap number 9 of 12 today--3/4 of the way through those!
Second, part of the littany of questions I get at each shift change and when a doctor visits focuses on the numbness in my fingertips. The question is actually phrased: "Any numbness or tingling in your fingertips or toes?" I respond in the affirmative relative to my fingers. I am often asked to distinguish between whether my fingertips are numb or tingling but had only been able to decipher that I didn't have the same sensitivity that I once did and that buttoning shirts or handling little pills were becoming difficult activities.
Well, during this round of chemo the nurses started pricking my finger to monitor for rises in blood glucose as a reaction to some of the steroids I'm taking. I can now report that my fingertips are not numb as I do feel those finger pricks. I understand that my tingliness will slowly dissipate once the chemotherapy is done--very welcome news.
Finally, I've received word that my bone marrow biopsy has been analyzed but perhaps has not yet been reviewed. I'm still holding out hope that I'll have a chance to review those tomorrow and to digest their meaning with Dr. Connolly and Marla in attendance.
The progress continues to be good . . . ever onward.
Before I get into my boring updates I want to alert my readership to another fundraising activity for the Leukemia and Lyphoma Society (my newfound favorite charity). A friend of mine has entered himself into a half-marathon (as long as he doesn't expect me to pick up the slack on the other half!). Please feel free to visit Brian's donation site: http://pages.teamintraining.org/nca/shamrock09/breeve To borrow from his thinkning, if I can weather the chemo and he can get up to run a few miles perhaps the readers of my blogs can band together to make contributions that will make a difference in finding a cure. Thank you for your efforts, Brian and I'm touched that my situation serves in part as rationale for undertaking this effort.
Moving into the more mundane updates to treatment . . .Let me start by announcing that I'll be having spinal tap number 9 of 12 today--3/4 of the way through those!
Second, part of the littany of questions I get at each shift change and when a doctor visits focuses on the numbness in my fingertips. The question is actually phrased: "Any numbness or tingling in your fingertips or toes?" I respond in the affirmative relative to my fingers. I am often asked to distinguish between whether my fingertips are numb or tingling but had only been able to decipher that I didn't have the same sensitivity that I once did and that buttoning shirts or handling little pills were becoming difficult activities.
Well, during this round of chemo the nurses started pricking my finger to monitor for rises in blood glucose as a reaction to some of the steroids I'm taking. I can now report that my fingertips are not numb as I do feel those finger pricks. I understand that my tingliness will slowly dissipate once the chemotherapy is done--very welcome news.
Finally, I've received word that my bone marrow biopsy has been analyzed but perhaps has not yet been reviewed. I'm still holding out hope that I'll have a chance to review those tomorrow and to digest their meaning with Dr. Connolly and Marla in attendance.
The progress continues to be good . . . ever onward.
Monday, January 5, 2009
Update
Good Morning All:
Not a tremendous amount to report today. I continue the process for round A3. I'm on the fourth floor here and not the typical 5th floor--consider it the 4th floor annexation of some extra 4th floor space. The room is officially in the 'female cancers' wing but 5 rooms have been blocked off for expanded hematology care and hematology nurses are assigned to the patient care down here on a rotating basis.
This is the second time I've been assigned a room on the 4th floor and I'm beginning to notice a slight disconnect between the doctors/nurses on this wing and my primary care team on the 5th floor. It is more common for the nurses to deliver changes in protocol down here which prompts my inquisitive my to ask what the cause of the change is. Nothing major so far, just disconcerting at times.
So far I believe that I'm on track for a Wednesday release . . .I'll keep everyone posted!
--Russ.
Not a tremendous amount to report today. I continue the process for round A3. I'm on the fourth floor here and not the typical 5th floor--consider it the 4th floor annexation of some extra 4th floor space. The room is officially in the 'female cancers' wing but 5 rooms have been blocked off for expanded hematology care and hematology nurses are assigned to the patient care down here on a rotating basis.
This is the second time I've been assigned a room on the 4th floor and I'm beginning to notice a slight disconnect between the doctors/nurses on this wing and my primary care team on the 5th floor. It is more common for the nurses to deliver changes in protocol down here which prompts my inquisitive my to ask what the cause of the change is. Nothing major so far, just disconcerting at times.
So far I believe that I'm on track for a Wednesday release . . .I'll keep everyone posted!
--Russ.
Sunday, January 4, 2009
Update
Here I am at Hopkins.
I got here yesterday afternoon and in the evening they hung the first dose of chemo. My thinking is that they are looking for a Wednesday discharge and to be able to couple those events with my 'envelope' meeting with Dr. Connolly if my bone marrow biopsy results are available.
So, for now I'll content myself with being a good patient, keeping my informed eye on the treatment proceedings, watching the football games, etc. I'm on the floor where sleep comes a bit easier but meals come too early--4:00 for dinner?!
All-in-all, I feel great and continue to answer 'no' to the litany of questions that I get multiple times per day from Nurses at shift change and Doctors on rounds. These questions point out all the awful side effects from treatment that I might have but don't. There is no other way to feel about that than thankful. I'm also pleased that the treatment team feels that if I haven't experienced the worst of these yet that I won't be likely to going forward--I'd welcome that.
--Russ.
I got here yesterday afternoon and in the evening they hung the first dose of chemo. My thinking is that they are looking for a Wednesday discharge and to be able to couple those events with my 'envelope' meeting with Dr. Connolly if my bone marrow biopsy results are available.
So, for now I'll content myself with being a good patient, keeping my informed eye on the treatment proceedings, watching the football games, etc. I'm on the floor where sleep comes a bit easier but meals come too early--4:00 for dinner?!
All-in-all, I feel great and continue to answer 'no' to the litany of questions that I get multiple times per day from Nurses at shift change and Doctors on rounds. These questions point out all the awful side effects from treatment that I might have but don't. There is no other way to feel about that than thankful. I'm also pleased that the treatment team feels that if I haven't experienced the worst of these yet that I won't be likely to going forward--I'd welcome that.
--Russ.
Saturday, January 3, 2009
Today's the day
Good Morning All:
Looks like round 5 starts today. I'll update everyone when I'm actually admitted and wearing the ever-stylish hospital gown.
I had the bone marrow biopsy done yesterday--it was quick and uneventful though I'm a little sore today from it. While waiting for the supplies for the procedure, I had a chance to ask the Nurse Practitioner, Audra, her thoughts on me coaching Nolan's baseball team since I'm coming up on a critical point where I would need to let the parents of his teammates know whether I'm coaching or not. Audra believes that timing-wise it should work (something I'd worked out several times already) and that she wouldn't anticipate a major shift in my physical condition as a result of the future chemo treatments. Her input on one of the goals I set for myself meant a lot--seems like I might get there!
The results from yesterday's biopsy will be ready around the middle of next week. As those results are available I'll pass them along. Again, I've been told that everyone would reasonably anticipate that the marrow is following suit with the lymph nodes. I'd love to have that sort of good news with the marrow. The nice thing is that I'll be hit with a percentage of 'infection' with the biopsy results--an actual number that I can latch onto.
Thanks for continuing to check in, I'll write you from Hopkins next!
--Russ.
Looks like round 5 starts today. I'll update everyone when I'm actually admitted and wearing the ever-stylish hospital gown.
I had the bone marrow biopsy done yesterday--it was quick and uneventful though I'm a little sore today from it. While waiting for the supplies for the procedure, I had a chance to ask the Nurse Practitioner, Audra, her thoughts on me coaching Nolan's baseball team since I'm coming up on a critical point where I would need to let the parents of his teammates know whether I'm coaching or not. Audra believes that timing-wise it should work (something I'd worked out several times already) and that she wouldn't anticipate a major shift in my physical condition as a result of the future chemo treatments. Her input on one of the goals I set for myself meant a lot--seems like I might get there!
The results from yesterday's biopsy will be ready around the middle of next week. As those results are available I'll pass them along. Again, I've been told that everyone would reasonably anticipate that the marrow is following suit with the lymph nodes. I'd love to have that sort of good news with the marrow. The nice thing is that I'll be hit with a percentage of 'infection' with the biopsy results--an actual number that I can latch onto.
Thanks for continuing to check in, I'll write you from Hopkins next!
--Russ.
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