Good Morning All:
Finally. Something to post and its good news! Yesterday I went to Hopkins for the first time since last Monday when I tested postive for the flu virus for a second time. This time they wanted to admit me on the spot since I did not have any of the flu symptoms! I wasn't prepared to be admitted on the spot so we compromised and settled on today. I've already received the call that a bed is open and I will be high-tailing it to Baltimore this AM to claim my spot for the 8th and final round of chemotherapy.
I had to scramble a bit since my logic led me to believe that the earliest I would be admitted was Wednesday. As a result I had several things scheduled for today. But, it seems like it will all work out and more importantly I'm finally back on track to finish up my chemotherapy regimen.
I should be in the hospital through Thursday receiving chemotherapy and released on Friday!
--Russ.
Tuesday, March 31, 2009
Wednesday, March 25, 2009
Delays continue - I'm moving on . . .
Good Afternoon All:
It seems that this influenza thing has really derailed the progress I was making. Monday's culture again tested positive for influenza and so the final chemotherapy treatment is again on hold. While this is disappointing because I want to be done with chemotherapy and back into the normal routines, the delays had already made things uncomfortable with appointments that I had originally thought to be safe all of the sudden being made 'up in the air' pending test results. So just about every delay has a silver lining as I am told I'll be able to make some appointment that I had already committed to.
The current plan has me reporting to Hopkins on Monday, March 30 for another test to see if I have finally gotten rid of the flu bug. Perhaps that points to an April 1 (how fitting) admit date but at this point I'm done guessing. Instead, I'm doing the things I had planned to be doing at this point. I'm engaging more at work (even though I'm not going in yet) and getting into full swing with Nolan's baseball team. I'll continue to make plans and to hedge my bets as I make them. Eventually this last round will be underway, then completed. Until then I'll be my antsy self when I'm stuck in the house but at least I'll have several more things to throw my thoughts and energies into.
--Russ.
It seems that this influenza thing has really derailed the progress I was making. Monday's culture again tested positive for influenza and so the final chemotherapy treatment is again on hold. While this is disappointing because I want to be done with chemotherapy and back into the normal routines, the delays had already made things uncomfortable with appointments that I had originally thought to be safe all of the sudden being made 'up in the air' pending test results. So just about every delay has a silver lining as I am told I'll be able to make some appointment that I had already committed to.
The current plan has me reporting to Hopkins on Monday, March 30 for another test to see if I have finally gotten rid of the flu bug. Perhaps that points to an April 1 (how fitting) admit date but at this point I'm done guessing. Instead, I'm doing the things I had planned to be doing at this point. I'm engaging more at work (even though I'm not going in yet) and getting into full swing with Nolan's baseball team. I'll continue to make plans and to hedge my bets as I make them. Eventually this last round will be underway, then completed. Until then I'll be my antsy self when I'm stuck in the house but at least I'll have several more things to throw my thoughts and energies into.
--Russ.
Sunday, March 22, 2009
The Flu + Suppression of the Immune System = Delay
Good Afternoon All:
Sorry for not posting sooner the results of Thursday's appointment. As expected the team at Hopkins opted to give me the weekend to kick the flu out of the system before re-testing me. I am scheduled to travel back to Hopkins on Monday for an afternoon appointment. By Tuesday they should have an idea as to whether the influenza culture grows or not.
If nothing happens I should be cleared to get admitted on Wednesday. One single complication exists as I see it: Thursday's blood test also showed that my platelets dipped below the threshold again. They weren't far below the threshold and I would expect that as I started to feel better the platelet production started back up again, but . . .
Anyway, I feel pretty good that Wednesday is going to happen and I am looking forward to it. I'll keep you posted!
--Russ.
Sorry for not posting sooner the results of Thursday's appointment. As expected the team at Hopkins opted to give me the weekend to kick the flu out of the system before re-testing me. I am scheduled to travel back to Hopkins on Monday for an afternoon appointment. By Tuesday they should have an idea as to whether the influenza culture grows or not.
If nothing happens I should be cleared to get admitted on Wednesday. One single complication exists as I see it: Thursday's blood test also showed that my platelets dipped below the threshold again. They weren't far below the threshold and I would expect that as I started to feel better the platelet production started back up again, but . . .
Anyway, I feel pretty good that Wednesday is going to happen and I am looking forward to it. I'll keep you posted!
--Russ.
Thursday, March 19, 2009
Cold? . . . Let's kick it up a notch, or two.
Good Morning All:
I'm on the precipice of a very rare Thursday Afternoon appointment. You might recall that I had a pretty bad cold over the weekend. That cold included a fever--a major concern for patients with suppressed immune systems. When I went into Hopkins on Monday they ran a number of cultures to try and isolate what was causing the fever. I also got another CT Scan of my chest and sinuses to locate sources of infection. Here is what I have learned so far from that battery of tests.
1. I tested positive for influenza. So I had the flu, not just a wimpy little cold.
2. I have pneumonia.
3. I have a brewing sinus infection.
4. My platelet levels finally got high enough for me to otherwise be admitted for the last round of chemo!
Needless to say they were not so certain that I should be getting that last round of chemotherapy on Monday and I was not admitted. They put me on an antibiotic and told me to come in on Thursday so that I could get a few doses under my belt before they re-evaluate me. When they learned that the influenza culture came back positive they pushed my appointment time from 11:00 to 2:00 so that I would encounter fewer patients and thereby lessen the possibility that I give the flu to someone with a severely suppressed immune system.
I've been down this road several times now and I know that when I walk in at 2:00 they will likely whisk me out of the waiting room and away from other patients ASAP and get me behind closed doors to contain my airborne virus(es). I can't help but appreciate the steps they take to keep bacteria and viruses from putting fellow cancer patients at risk and I am sure that I have benefitted as well (despite the 4 or 5 incidents I have had thus far). I will be interested in watching them 'do the math' on my physical condition today. Once I get the chemo my white blood cells will start dissappearing and my body's ability to fight illness will go with them. Even though my fever is long gone, my nose is running less and my cough less frequent and severe, I would not be surprised if they take a more cautious route and wait a little while longer before hitting me with chemo. This would give my body just a little more time to clear out any/all infections.
But perhaps they'll conclude that since I'm generally getting better, and I have the platelets to withstand the chemo, and will be under 24 hour care for 3 days (which wouldn't be a bad thing either) that they should proceed with my chemotherapy. In that case, I am likely to be admitted tomorrow.
In the end, I am very thankful for the expertise among the nurses and doctors at Johns Hopkins. They can weigh these variables using their long history with patients in my position and make a decision on my behalf that I know I will feel comfortable with. I will appreciate and accept the scenario where there is further delay, but I cannot help but continuing to hope that the delays are over and round 8 begins tomorrow (finally).
I'm on the precipice of a very rare Thursday Afternoon appointment. You might recall that I had a pretty bad cold over the weekend. That cold included a fever--a major concern for patients with suppressed immune systems. When I went into Hopkins on Monday they ran a number of cultures to try and isolate what was causing the fever. I also got another CT Scan of my chest and sinuses to locate sources of infection. Here is what I have learned so far from that battery of tests.
1. I tested positive for influenza. So I had the flu, not just a wimpy little cold.
2. I have pneumonia.
3. I have a brewing sinus infection.
4. My platelet levels finally got high enough for me to otherwise be admitted for the last round of chemo!
Needless to say they were not so certain that I should be getting that last round of chemotherapy on Monday and I was not admitted. They put me on an antibiotic and told me to come in on Thursday so that I could get a few doses under my belt before they re-evaluate me. When they learned that the influenza culture came back positive they pushed my appointment time from 11:00 to 2:00 so that I would encounter fewer patients and thereby lessen the possibility that I give the flu to someone with a severely suppressed immune system.
I've been down this road several times now and I know that when I walk in at 2:00 they will likely whisk me out of the waiting room and away from other patients ASAP and get me behind closed doors to contain my airborne virus(es). I can't help but appreciate the steps they take to keep bacteria and viruses from putting fellow cancer patients at risk and I am sure that I have benefitted as well (despite the 4 or 5 incidents I have had thus far). I will be interested in watching them 'do the math' on my physical condition today. Once I get the chemo my white blood cells will start dissappearing and my body's ability to fight illness will go with them. Even though my fever is long gone, my nose is running less and my cough less frequent and severe, I would not be surprised if they take a more cautious route and wait a little while longer before hitting me with chemo. This would give my body just a little more time to clear out any/all infections.
But perhaps they'll conclude that since I'm generally getting better, and I have the platelets to withstand the chemo, and will be under 24 hour care for 3 days (which wouldn't be a bad thing either) that they should proceed with my chemotherapy. In that case, I am likely to be admitted tomorrow.
In the end, I am very thankful for the expertise among the nurses and doctors at Johns Hopkins. They can weigh these variables using their long history with patients in my position and make a decision on my behalf that I know I will feel comfortable with. I will appreciate and accept the scenario where there is further delay, but I cannot help but continuing to hope that the delays are over and round 8 begins tomorrow (finally).
Monday, March 16, 2009
Update - The delays continue
Good Morning All:
Well, Friday came and went and still no hospital admission. My platelets hadn't gotten to the mandatory 60,000 level and the effects of a virus call into question whether I would have been admitted anyway as certain measures of liver functioning were thrown out of whack. I generally felt ok with the exception of a minor stomach ache--until this weekend. I now have a full-blown cold of some sort (I hope it isn't pneumonia again, something I'm sure they'll take measures to confirm or rule out today). I'm coughing so much that my ribs hurt.
I'll continue to go back to the clinic every Monday, Wednesday and Friday until they deem my body ready to receive this last dose of chemo. I suspect that it won't be today given how I feel, perhaps Wednesday.
On a more positive note, the baseball season for my son's team begins tomorrow! We're getting the kids out for a short practice--exciting!
--Russ.
Well, Friday came and went and still no hospital admission. My platelets hadn't gotten to the mandatory 60,000 level and the effects of a virus call into question whether I would have been admitted anyway as certain measures of liver functioning were thrown out of whack. I generally felt ok with the exception of a minor stomach ache--until this weekend. I now have a full-blown cold of some sort (I hope it isn't pneumonia again, something I'm sure they'll take measures to confirm or rule out today). I'm coughing so much that my ribs hurt.
I'll continue to go back to the clinic every Monday, Wednesday and Friday until they deem my body ready to receive this last dose of chemo. I suspect that it won't be today given how I feel, perhaps Wednesday.
On a more positive note, the baseball season for my son's team begins tomorrow! We're getting the kids out for a short practice--exciting!
--Russ.
Tuesday, March 10, 2009
Update
Good Morning All:
I woke up this AM realizing it has been a while since I posted. There really isn't much that has happened since my posting on Thursday so please try to stifle the yawns . . .
I went to Hopkins yesterday and learned that my platelets hadn't budged from the count taken on Friday. I'm tenatively scheduled to begin round 8 on Friday the 13th (!) but all that depends on my body continuing to make platelets to get me up to the minimum threshold established by my doctors. Since there really isn't anything more to do than wait I've been given off until Friday. It could be worse, though. I have energy and white blood cells so that means that I can get out to run errands, etc. which makes me feel useful and keeps me a bit busier--a very welcome circumstance.
I woke up this AM realizing it has been a while since I posted. There really isn't much that has happened since my posting on Thursday so please try to stifle the yawns . . .
I went to Hopkins yesterday and learned that my platelets hadn't budged from the count taken on Friday. I'm tenatively scheduled to begin round 8 on Friday the 13th (!) but all that depends on my body continuing to make platelets to get me up to the minimum threshold established by my doctors. Since there really isn't anything more to do than wait I've been given off until Friday. It could be worse, though. I have energy and white blood cells so that means that I can get out to run errands, etc. which makes me feel useful and keeps me a bit busier--a very welcome circumstance.
Thursday, March 5, 2009
Update
Good Morning All:
Just a quick update of a slightly minor but nice development from yesterday's trip to Hopkins. As you are all aware I have my eyes set on my final hospital admission to begin the 8th and final round of my treatment regimen.
The analysis of my bloodwork yesterday showed that my white blood cells are coming out of neutrapenia (I should be 'out of the woods' today)--the first step in me getting out of round 7 and into round 8.
Avid readers of my blog(s) should recognize that the platelets have been the slowers of progress recently and they may still be a bit of a bugaboo as they are still slowly dropping as a result of the round 7 chemo treatments. The question is whether they will drop low enough to warrant a transfusion that would provide a nice boost toward the threshold levels needed to start the next round or if I will start making platelets on my own in the next few days to where I will likely take a much slower road to getting round 8 started.
In any event, round 8 is before me!
--Russ.
Just a quick update of a slightly minor but nice development from yesterday's trip to Hopkins. As you are all aware I have my eyes set on my final hospital admission to begin the 8th and final round of my treatment regimen.
The analysis of my bloodwork yesterday showed that my white blood cells are coming out of neutrapenia (I should be 'out of the woods' today)--the first step in me getting out of round 7 and into round 8.
Avid readers of my blog(s) should recognize that the platelets have been the slowers of progress recently and they may still be a bit of a bugaboo as they are still slowly dropping as a result of the round 7 chemo treatments. The question is whether they will drop low enough to warrant a transfusion that would provide a nice boost toward the threshold levels needed to start the next round or if I will start making platelets on my own in the next few days to where I will likely take a much slower road to getting round 8 started.
In any event, round 8 is before me!
--Russ.
Tuesday, March 3, 2009
Lasts
Good Morning All:
My neutropenic bones are back on the steroids as of yesterday and so the energy levels are spiking!
I wanted to give a quick update that all continues to go well. My counts are pretty low across the board (white blood cells, red blood cells, platelets, neutrophils--makes you wonder what I do have in my veins) and tomorrow is shaping up to be a long transfusion day--somewhere on the order of 7 or 8 hours to get red blood cells and platelets.
I wanted to share with you one of the recent joys as I finish my last A-cycle of treatment and move into the final B-cycle and cycle number 8 of 8. It is realizing that I have finished or will be finishing some of the more unpleasant parts of the process. For example, yesterday I had my last dose of Vincristine, a particularly nasty chemotherapy drug whose more sinister side effects is to cause feeling loss in my finger tips. For a time this feeling loss had extended to the first knuckles of each each finger. I still have baseline numbness in the tips themselves. There was always a chance that the nerve damage caused by this drug could be permanent but the fact that mine seems to ebb-and-flow based on the proximity to the treatment of the drugs seems to point that I should recover the feeling. Good thing, Audrey gets frustrated with how long it takes me to button the backs of her dresses.
Despite the energy boosts I get from these steroids, it also naturally causes sleeplessness. I get up in the morning with lots of ideas and the energy to act on them but you should see me crash around 9:00. This is my last 4-day dosing cycle of these steroids--I will take great joy in throwing away my empty pill bottle on Thursday afternoon.
These are the most recent 'lasts' that I can point to. I'll be making mention of them as they occur so you can all share in the satisfaction of these successes even if it might not mean quite as much to you as the larger milestones achieved so far.
--Russ.
My neutropenic bones are back on the steroids as of yesterday and so the energy levels are spiking!
I wanted to give a quick update that all continues to go well. My counts are pretty low across the board (white blood cells, red blood cells, platelets, neutrophils--makes you wonder what I do have in my veins) and tomorrow is shaping up to be a long transfusion day--somewhere on the order of 7 or 8 hours to get red blood cells and platelets.
I wanted to share with you one of the recent joys as I finish my last A-cycle of treatment and move into the final B-cycle and cycle number 8 of 8. It is realizing that I have finished or will be finishing some of the more unpleasant parts of the process. For example, yesterday I had my last dose of Vincristine, a particularly nasty chemotherapy drug whose more sinister side effects is to cause feeling loss in my finger tips. For a time this feeling loss had extended to the first knuckles of each each finger. I still have baseline numbness in the tips themselves. There was always a chance that the nerve damage caused by this drug could be permanent but the fact that mine seems to ebb-and-flow based on the proximity to the treatment of the drugs seems to point that I should recover the feeling. Good thing, Audrey gets frustrated with how long it takes me to button the backs of her dresses.
Despite the energy boosts I get from these steroids, it also naturally causes sleeplessness. I get up in the morning with lots of ideas and the energy to act on them but you should see me crash around 9:00. This is my last 4-day dosing cycle of these steroids--I will take great joy in throwing away my empty pill bottle on Thursday afternoon.
These are the most recent 'lasts' that I can point to. I'll be making mention of them as they occur so you can all share in the satisfaction of these successes even if it might not mean quite as much to you as the larger milestones achieved so far.
--Russ.
Saturday, February 28, 2009
Two divergent paths
Good Afternoon All:
Again, I must apologize for the time between posts. I dissassembled most computers in the house to make room for some electrical work to be done and just got them put back together again last night. Appointments and schedules since Tuesday this past week have been pretty whirlwind and so finding a few moments to write a worthy post has been difficult. There is a topic of substance that I want to address with this post and I didn't want to short change it while balancing a laptop in the outpatient clinic and dodging nurses and bags of red blood cells.
On the eve of my last post my support team lost another member. Tuesday night my paternal grandmother, Martha Flickinger (she'd been divorced and remarried, hence the name difference), died of cancer. Like most cancer patients and survivors I have a fair amount of family history of cancer. This is my second grandparent to die of the disease and 3 of 4 have had more than one form/occurrence of the disease.
Grandma Flickinger had had breast cancer some time ago and some time after I was diagnosed cancer was found in her bladder. We spoke on the phone somewhere between my diagnosis and the time while her diagnosis was still pending. She conveyed at that time the conviction that she again had cancer based on what evidence existed--true to the outlook I've tried to maintain during treatment I took the optimistic route and suggested other possibilities. Needless to say, my grandmother and her medical team knew more than I did.
I've done a little bit of reading during my treatment about the mental state of patients. In one book the author speculated that many medical professionals simply do not wish to live to a ripe old age. They have spent a good portion of their lives witnessing the broad spectrum of human health and spent an inordinate amount of time treating those that were in the worst shape. The author continued to propose that for this reason health professionals when faced with a diagnosis like cancer would be more apt to resign themselves to the disease. It is an interesting hypothesis and one that I suppose could apply to my grandmother as she spent some time as a nurse. Perhaps it was from this sort of vantage point that she made her decision to forgo treatment for the cancer in her bladder or perhaps she simply didn't have the energy for the fight. In any event, she made her decision and the point of no return for receiving treatment came and went. She was cared for by Hospice and visiting nurses and she passed away in reported comfort in her own apartment Tuesday evening.
Since learning of her diagnosis and her decision to not receive treatment I have been wrestling with my grandmother's circumstance. The mere fact that our diagnoses were so close chronologically has created a link in my own mind between her experience with cancer and my own. While we may have started from similar starting points, our paths were divergent from the outset. I chose to be treated and resolved to beat the disease, she opted to forgo treatment. I have continued to keep my head up and to look to the future while she prepared for the end of life. It should come as no surprise, then, that our paths lead to very different places: while I begin to prepare for post-treatment life my grandmother's came to an end.
And yet, from the time I learned of her decision to not seek treatment the link I felt to her cancer diagnosis was a bit singed. There was always a nagging thought that her decision could have some weight or bearing on my outcome in some cosmic or karma-based way. The inevitablity of her death just seemed hard to accept, reconcile and to witness while I fought so hard to move in the other direction. The understanding and support I felt for her decision could not have jived with the attention that I was paying daily to getting better. For that reason we did not interact much during her final months. Prior to this we didn't call or write each other regularly though under other circumstances I feel certain that I would have reached out to her a bit more. Instead we kept tabs on each other through reports from my father.
These details come across as cold as I read them but I think both of us were rightly introspective with regard to the other's situation. My recovery from cancer and my grandmother's death from it are journeys that require stamina, courage, and rely on periodic displays of grim determination to get through the trying times. The strength for each of us to move to our desired outcomes simply would have been hard to come by if we kept running back to the point where our paths diverged to check on each other.
My grandmother was rooting for me to get better in the same way that I supported her decision not to. Along with the sadness that comes from her dying there is also a sense that part of my attention that had been wrested away out of concern for her has been released to return to the business of completing treatment and being cured of cancer. So perhaps the link between us is there still--out of her decision to die from her cancer perhaps I have been given the final burst of strength and determination I will need to complete my course of treatment and to achieve a cure for mine. It seems to me that I can honor and remember her best in this way and so I have resolved to do just that.
Again, I must apologize for the time between posts. I dissassembled most computers in the house to make room for some electrical work to be done and just got them put back together again last night. Appointments and schedules since Tuesday this past week have been pretty whirlwind and so finding a few moments to write a worthy post has been difficult. There is a topic of substance that I want to address with this post and I didn't want to short change it while balancing a laptop in the outpatient clinic and dodging nurses and bags of red blood cells.
On the eve of my last post my support team lost another member. Tuesday night my paternal grandmother, Martha Flickinger (she'd been divorced and remarried, hence the name difference), died of cancer. Like most cancer patients and survivors I have a fair amount of family history of cancer. This is my second grandparent to die of the disease and 3 of 4 have had more than one form/occurrence of the disease.
Grandma Flickinger had had breast cancer some time ago and some time after I was diagnosed cancer was found in her bladder. We spoke on the phone somewhere between my diagnosis and the time while her diagnosis was still pending. She conveyed at that time the conviction that she again had cancer based on what evidence existed--true to the outlook I've tried to maintain during treatment I took the optimistic route and suggested other possibilities. Needless to say, my grandmother and her medical team knew more than I did.
I've done a little bit of reading during my treatment about the mental state of patients. In one book the author speculated that many medical professionals simply do not wish to live to a ripe old age. They have spent a good portion of their lives witnessing the broad spectrum of human health and spent an inordinate amount of time treating those that were in the worst shape. The author continued to propose that for this reason health professionals when faced with a diagnosis like cancer would be more apt to resign themselves to the disease. It is an interesting hypothesis and one that I suppose could apply to my grandmother as she spent some time as a nurse. Perhaps it was from this sort of vantage point that she made her decision to forgo treatment for the cancer in her bladder or perhaps she simply didn't have the energy for the fight. In any event, she made her decision and the point of no return for receiving treatment came and went. She was cared for by Hospice and visiting nurses and she passed away in reported comfort in her own apartment Tuesday evening.
Since learning of her diagnosis and her decision to not receive treatment I have been wrestling with my grandmother's circumstance. The mere fact that our diagnoses were so close chronologically has created a link in my own mind between her experience with cancer and my own. While we may have started from similar starting points, our paths were divergent from the outset. I chose to be treated and resolved to beat the disease, she opted to forgo treatment. I have continued to keep my head up and to look to the future while she prepared for the end of life. It should come as no surprise, then, that our paths lead to very different places: while I begin to prepare for post-treatment life my grandmother's came to an end.
And yet, from the time I learned of her decision to not seek treatment the link I felt to her cancer diagnosis was a bit singed. There was always a nagging thought that her decision could have some weight or bearing on my outcome in some cosmic or karma-based way. The inevitablity of her death just seemed hard to accept, reconcile and to witness while I fought so hard to move in the other direction. The understanding and support I felt for her decision could not have jived with the attention that I was paying daily to getting better. For that reason we did not interact much during her final months. Prior to this we didn't call or write each other regularly though under other circumstances I feel certain that I would have reached out to her a bit more. Instead we kept tabs on each other through reports from my father.
These details come across as cold as I read them but I think both of us were rightly introspective with regard to the other's situation. My recovery from cancer and my grandmother's death from it are journeys that require stamina, courage, and rely on periodic displays of grim determination to get through the trying times. The strength for each of us to move to our desired outcomes simply would have been hard to come by if we kept running back to the point where our paths diverged to check on each other.
My grandmother was rooting for me to get better in the same way that I supported her decision not to. Along with the sadness that comes from her dying there is also a sense that part of my attention that had been wrested away out of concern for her has been released to return to the business of completing treatment and being cured of cancer. So perhaps the link between us is there still--out of her decision to die from her cancer perhaps I have been given the final burst of strength and determination I will need to complete my course of treatment and to achieve a cure for mine. It seems to me that I can honor and remember her best in this way and so I have resolved to do just that.
Tuesday, February 24, 2009
Jitters and tribulations
Good Morning All:
Got a nice surprise yesterday when I learned that I was going to sleep in my own bed last night. I got to go home around dinner time yesterday instead of lunch time today--a very welcome turn of events considering out other recent admissions have gone!
I do need to apologize for the radio silence though rest assured it comes with good reason and not because anything untoward has happened to me. As it turns out either the mother board or the hard drive has ceased to operate on my new laptop and so I was without a way to post to the blogs or check e-mail from about Saturday on. Since I'm home and have some white blood cells with which to operate I will set about getting this rectified ASAP.
By way of update, with my release from the hospital yesterday I am now down to just one remaining hospital stay and one remaining spinal tap. My out-patient regimen will continue into March and I will be moving into the maintenance program that will last me a couple of years when the intense treatments conclude. I am very much looking forward to replacing the frequent trips to hopkins, tubes in my chest, and volume of medicine with just a few pills and sporadic visits to the folks in Baltimore.
Finally, just a bit of humor for those who live or work with me. One of the pills I get from Hopkins during the A-Cycles (of which I have no more!) is a steroid. One of the side-effects is that it can make one excitable or jittery. I took my last dose of those pills last night and man you should see me this morning. I can hardly type or sit still--runs very counter to my normal demeanor. I can only imagine what I look like in my own home: standing up-sitting down, upstairs-downstairs, blogging-getting coffee (like I need that right now!). At any rate, much better being jittery here with some room to roam than a small room in Hopkins wondering when I'll get released!
--Russ.
Got a nice surprise yesterday when I learned that I was going to sleep in my own bed last night. I got to go home around dinner time yesterday instead of lunch time today--a very welcome turn of events considering out other recent admissions have gone!
I do need to apologize for the radio silence though rest assured it comes with good reason and not because anything untoward has happened to me. As it turns out either the mother board or the hard drive has ceased to operate on my new laptop and so I was without a way to post to the blogs or check e-mail from about Saturday on. Since I'm home and have some white blood cells with which to operate I will set about getting this rectified ASAP.
By way of update, with my release from the hospital yesterday I am now down to just one remaining hospital stay and one remaining spinal tap. My out-patient regimen will continue into March and I will be moving into the maintenance program that will last me a couple of years when the intense treatments conclude. I am very much looking forward to replacing the frequent trips to hopkins, tubes in my chest, and volume of medicine with just a few pills and sporadic visits to the folks in Baltimore.
Finally, just a bit of humor for those who live or work with me. One of the pills I get from Hopkins during the A-Cycles (of which I have no more!) is a steroid. One of the side-effects is that it can make one excitable or jittery. I took my last dose of those pills last night and man you should see me this morning. I can hardly type or sit still--runs very counter to my normal demeanor. I can only imagine what I look like in my own home: standing up-sitting down, upstairs-downstairs, blogging-getting coffee (like I need that right now!). At any rate, much better being jittery here with some room to roam than a small room in Hopkins wondering when I'll get released!
--Russ.
Saturday, February 21, 2009
Let me check my calendar
Good Morning All:
Chemo is underway, already have two treatments under my belt and will get another 6 or so during my in patient stay. By the time I leave here early next week I will have crossed off all but one hospital stay and all but one spinal tap.
As I wrote in an earlier entry, it is time to get my head up and looking to the future. For now, that tends to be the next few months as we try to plan for my return to work, our summer plans (vacation, summer camp for the kids), and Audrey's first day of school. In this process I have been surprised by a very seemingly innocuous occurrence that has meant quite a bit each time it has happened over the past couple of weeks.
As time has gone by and we've drawn closer to the end of my intense chemotherapy treatment we've also drawn closer to events at work and at home that I SHOULD be available for. It has been quite a downer throughout all of this to routinely have to reply to invitations that I could not possibly predict until much closer to the date of an event whether or not I would be available. I tried making educated guesses and was burned about as often as I was right. I was left to simply make very late RSVPs or, if pressed for an early answer, to decline with an explanation unless I was sure I'd be available.
Now, we are starting to approach events that are to occur in mid to late March. My delays in getting started on round 7 throws that timeframe into a bit of a shadow but my availability is clearly shifting from 'unlikely' to possible and even probable. This is a very welcome change and a source of optimism for me as the days go by.
This isn't to say that there isn't still trepidation about leaving the safety net of having routine treatment from the top notch health professionals at Hopkins. I think at this point, however, there are so many positive changes that come from a return to 'normal' (I will still be taking chemo medicine orally and have periodic follow ups at Hopkins) that there could be more health benefits in the form of positive 'vibes' to be realized that go beyond the pumping of medicine into my body and I'm ready to realize those benefits. I guess I could say I'm ready to join my mates inland on the island of Sicily--are you all ready for me?
Chemo is underway, already have two treatments under my belt and will get another 6 or so during my in patient stay. By the time I leave here early next week I will have crossed off all but one hospital stay and all but one spinal tap.
As I wrote in an earlier entry, it is time to get my head up and looking to the future. For now, that tends to be the next few months as we try to plan for my return to work, our summer plans (vacation, summer camp for the kids), and Audrey's first day of school. In this process I have been surprised by a very seemingly innocuous occurrence that has meant quite a bit each time it has happened over the past couple of weeks.
As time has gone by and we've drawn closer to the end of my intense chemotherapy treatment we've also drawn closer to events at work and at home that I SHOULD be available for. It has been quite a downer throughout all of this to routinely have to reply to invitations that I could not possibly predict until much closer to the date of an event whether or not I would be available. I tried making educated guesses and was burned about as often as I was right. I was left to simply make very late RSVPs or, if pressed for an early answer, to decline with an explanation unless I was sure I'd be available.
Now, we are starting to approach events that are to occur in mid to late March. My delays in getting started on round 7 throws that timeframe into a bit of a shadow but my availability is clearly shifting from 'unlikely' to possible and even probable. This is a very welcome change and a source of optimism for me as the days go by.
This isn't to say that there isn't still trepidation about leaving the safety net of having routine treatment from the top notch health professionals at Hopkins. I think at this point, however, there are so many positive changes that come from a return to 'normal' (I will still be taking chemo medicine orally and have periodic follow ups at Hopkins) that there could be more health benefits in the form of positive 'vibes' to be realized that go beyond the pumping of medicine into my body and I'm ready to realize those benefits. I guess I could say I'm ready to join my mates inland on the island of Sicily--are you all ready for me?
Friday, February 20, 2009
Made It! Round 7 under way
Good Afternoon All:
The delay is over! My platelets crept over the 60,000 threshold and I was promptly whisked to a hospital room to begin round 7 of treatment.
This marks the beginning of a series of 'lasts'. This will be the last cycle A regimen that I will go through, my last hospital stay scheduled for 5 days, etc. I am definitely excited to be at this point finally.
I don't think that I actually posted an update regarding my little case of pneumonia. I had a CT Scan on Monday to re-assess how my lungs were doing and I learned that there was no further sign of pneumonia. I have a little bit of a lingering cough but certainly nothing to worry about.
--Russ.
The delay is over! My platelets crept over the 60,000 threshold and I was promptly whisked to a hospital room to begin round 7 of treatment.
This marks the beginning of a series of 'lasts'. This will be the last cycle A regimen that I will go through, my last hospital stay scheduled for 5 days, etc. I am definitely excited to be at this point finally.
I don't think that I actually posted an update regarding my little case of pneumonia. I had a CT Scan on Monday to re-assess how my lungs were doing and I learned that there was no further sign of pneumonia. I have a little bit of a lingering cough but certainly nothing to worry about.
--Russ.
Tuesday, February 17, 2009
Milestones
Good Morning All:
Despite being required to report to Hopkins every day during the past week it could not have worked out better. I saw a particular low point two weeks ago when I had to ask Nolan which he would rather have me at home for: his actual birthday (Monday, Feb. 9th) or his birthday party with friends, etc. on Saturday, Feb. 14th. Of course, I wanted to attend both but the way things were shaping up it appeared I would likely miss one of these and might have the opportunity to sway the start of the round 7 hospital admission to make certain that I could be around for the one that he chose.
As it turned out my counts dipped and the start of round 7 needed to be delayed and is still in delay. It appears that tomorrow could be it if my platelets come around. In the meantime I was able to be home for all of Nolan's birthday.
In years prior to this one, birthdays (mine and others) were seen as special dates during the course of the year that required reservations on the social calendar, perhaps some planning and work to make them special, and were often seen more for the chores they create than the milestones they are meant to celebrate. This is yet another 'thing' that has changed for me. It wounded me to have to ask Nolan to prioritize one facet of his birthday celebration over another because I might not be available for both. I was immensely relieved when I learned that I would attend both and would have the white blood cells to attend the kids' birthday party without sneaking my neutropenic body in.
This year I was able to enjoy the event of Nolan's 8th birthday in a way that I probably have not enjoyed his birthday since perhaps his first one. I spent less time worrying about how much the event cost, whether the kids were having fun, getting hurt, allergic to peanuts, going to get their goody bags, etc. In place of that worrying I watched Nolan in his element--Running around with his friends, smiling, laughing, and turning 8. I played host to the parents that came with the kids and visited with my parents and in-laws. I enjoyed myself immensely and was pretty tired afterwards.
This is the angle from which I want to watch all of the milestones. We celebrate them to celebrate them, not to create work for ourselves or to spend the money that we budget for such things. This is not to say that I won't do the chores involved in planning the events or spend the money to have them but the chores and bills will no longer BE the event as they have been in the past. Instead, the focus will shift to where it should have been all along--creating an opportunity for all attendees to celebrate in a memorable fashion. This would include the hosts who should be able to report that they celebrated a milestone rather than saying they 'hosted a party' when all is said and done.
I've got lots of celebrating to do and I plan to become quite accomplished at it.
--Russ.
Despite being required to report to Hopkins every day during the past week it could not have worked out better. I saw a particular low point two weeks ago when I had to ask Nolan which he would rather have me at home for: his actual birthday (Monday, Feb. 9th) or his birthday party with friends, etc. on Saturday, Feb. 14th. Of course, I wanted to attend both but the way things were shaping up it appeared I would likely miss one of these and might have the opportunity to sway the start of the round 7 hospital admission to make certain that I could be around for the one that he chose.
As it turned out my counts dipped and the start of round 7 needed to be delayed and is still in delay. It appears that tomorrow could be it if my platelets come around. In the meantime I was able to be home for all of Nolan's birthday.
In years prior to this one, birthdays (mine and others) were seen as special dates during the course of the year that required reservations on the social calendar, perhaps some planning and work to make them special, and were often seen more for the chores they create than the milestones they are meant to celebrate. This is yet another 'thing' that has changed for me. It wounded me to have to ask Nolan to prioritize one facet of his birthday celebration over another because I might not be available for both. I was immensely relieved when I learned that I would attend both and would have the white blood cells to attend the kids' birthday party without sneaking my neutropenic body in.
This year I was able to enjoy the event of Nolan's 8th birthday in a way that I probably have not enjoyed his birthday since perhaps his first one. I spent less time worrying about how much the event cost, whether the kids were having fun, getting hurt, allergic to peanuts, going to get their goody bags, etc. In place of that worrying I watched Nolan in his element--Running around with his friends, smiling, laughing, and turning 8. I played host to the parents that came with the kids and visited with my parents and in-laws. I enjoyed myself immensely and was pretty tired afterwards.
This is the angle from which I want to watch all of the milestones. We celebrate them to celebrate them, not to create work for ourselves or to spend the money that we budget for such things. This is not to say that I won't do the chores involved in planning the events or spend the money to have them but the chores and bills will no longer BE the event as they have been in the past. Instead, the focus will shift to where it should have been all along--creating an opportunity for all attendees to celebrate in a memorable fashion. This would include the hosts who should be able to report that they celebrated a milestone rather than saying they 'hosted a party' when all is said and done.
I've got lots of celebrating to do and I plan to become quite accomplished at it.
--Russ.
Thursday, February 12, 2009
Complicated
Good Morning All:
Trying to get a quick update in before I head out to Hopkins this AM. As I wrote in my most recent posts, I am continuing to go to daily appointments at Hopkins to treat a couple of infections--one in my catheter and another that appears to be the beginnings of pneumonia. No one at Hopkins seems terribly alarmed by either so I will continue to take my cues from them.
As it turns out, just before leaving Hopkins on Tuesday my nurse noticed a change in my catheter site and called over the charge nurse. After a brief consult they decided that my catheter was starting to slide out of place and that it would need to be replaced. Yesterday I had a long day at Hopkins capped off by the minor surgical procedures to pull out the old catheter and replace it with a new one.
While it makes perfect sense to me, the nurses looked at me as if I had sprouted a third arm when I suggested that getting a new catheter makes short work of the infection that had grown in the old one. In fact, I'm going to Hopkins today and the only item on the agenda is for me to receive the antibiotic treatment for the catheter infection . . . strikes me as odd, but what do I know.
I still have the tell-tale cough from the pneumonia and I'll be getting a follow up CT Scan tomorrow to see if how treatment of that condition is going. We are still looking at a Sunday or Monday admission date if the platelets cooperated. Since I was undergoing some surgery yesterday I received an unexpected boost to my platelet count in the form of a transfusion (so I didn't bleed to death)--we'll see if my body welcomes the new platelets and builds on that count or if they begin to dwindle due to infection, lingering chemo, etc.
--Russ.
Trying to get a quick update in before I head out to Hopkins this AM. As I wrote in my most recent posts, I am continuing to go to daily appointments at Hopkins to treat a couple of infections--one in my catheter and another that appears to be the beginnings of pneumonia. No one at Hopkins seems terribly alarmed by either so I will continue to take my cues from them.
As it turns out, just before leaving Hopkins on Tuesday my nurse noticed a change in my catheter site and called over the charge nurse. After a brief consult they decided that my catheter was starting to slide out of place and that it would need to be replaced. Yesterday I had a long day at Hopkins capped off by the minor surgical procedures to pull out the old catheter and replace it with a new one.
While it makes perfect sense to me, the nurses looked at me as if I had sprouted a third arm when I suggested that getting a new catheter makes short work of the infection that had grown in the old one. In fact, I'm going to Hopkins today and the only item on the agenda is for me to receive the antibiotic treatment for the catheter infection . . . strikes me as odd, but what do I know.
I still have the tell-tale cough from the pneumonia and I'll be getting a follow up CT Scan tomorrow to see if how treatment of that condition is going. We are still looking at a Sunday or Monday admission date if the platelets cooperated. Since I was undergoing some surgery yesterday I received an unexpected boost to my platelet count in the form of a transfusion (so I didn't bleed to death)--we'll see if my body welcomes the new platelets and builds on that count or if they begin to dwindle due to infection, lingering chemo, etc.
--Russ.
Sunday, February 8, 2009
Update
Good Afternoon All:
Just banging out an update while sitting here at Hopkins . . . I'm continuing to receive daily treatment for the infections that have been discovered. Other than being tired from the decreased opportunities to sleep, I'm feeling better with less coughing and sneezing. My counts continue to slowly recover and I'm no longer neutrapenic. The only sticking point are those pesky platelets. They continue to fall so I suspect that I'm in for a fairly lengthy delay as I wait for those to reverse direction and then climb to a level that will support the next round of chemo.
To some degree I'm OK with a little bit of delay here. Nolan turns 8 tomorrow and his birthday party is Saturday. I'd hate to miss either day and will be conflicted if we approach Saturday and my counts are such that I might get admitted. It might be the one time that I ask them to delay my admission date . . .
--Russ.
Just banging out an update while sitting here at Hopkins . . . I'm continuing to receive daily treatment for the infections that have been discovered. Other than being tired from the decreased opportunities to sleep, I'm feeling better with less coughing and sneezing. My counts continue to slowly recover and I'm no longer neutrapenic. The only sticking point are those pesky platelets. They continue to fall so I suspect that I'm in for a fairly lengthy delay as I wait for those to reverse direction and then climb to a level that will support the next round of chemo.
To some degree I'm OK with a little bit of delay here. Nolan turns 8 tomorrow and his birthday party is Saturday. I'd hate to miss either day and will be conflicted if we approach Saturday and my counts are such that I might get admitted. It might be the one time that I ask them to delay my admission date . . .
--Russ.
Thursday, February 5, 2009
Well, now I've gone and done it. . .
Good Morning All:
I'm posting this AM from the outpatient clinic at Hopkins. On Tuesday I told you all that I had a cold. In the early evening hours of the prior day my temperature sneaked above the 38-degrees celsius threshold (100.4 degrees farenheit) for being considered a fever worth worrying about. I posted a 38.1. This happened in about the 8th hour of a 9 or 10 hour day as an outpatient. They halted my blood transfusion fearing that I was having a reaction and they drew blood so they could culture it and learn whether there was infection worth worrying about.
On Tuesday evening I received a call at 10:00 Pm from the attending physician who informed me that one of the cultures had started to grow and he was toying with the idea of having me come in that night! I was able to dissuade him since my temperature had not since crept above the 38-degree threshold (it hadn't crept above that threshold prior to that measurement either) and since I had an outpatient appointment scheduled just 11 hours from the time of his call.
Wednesday's appointment saw me in radiology for a CT scan of my chest and sinuses (looking for sources of infection) and receiving a blood transfusion since they ruled out my having a reaction as the source of the elevated temperature. Also while I was there more details began to surface about the infection I have. From the culture they are pretty certain that I have a bacterial infection in one, or both, of my Hickman lines. This involves one regimen of antibiotics. Additionally, the CT scan revealed that my lungs had a "pre-pneumonia" condition where fluid was beginnning to build--no doubt from the cold I had been suffering through. This involves a second regimen of antibiotics.
Both of these regimen require medication that is infused intravenously and a new set of procedures, skills, etc at home. Marla and I will be getting less sleep than normal over the next two weeks so if we look or sound tired and/or grumpy please cut us some slack.
For what it is worth I woke up this morning having no elevated temperature at all, less of a runny nose, and fewer coughs. Hopefully the cold is pretty well behind me and the treatment of these infections is as academic as the nurses make it sound . . .
--Russ.
I'm posting this AM from the outpatient clinic at Hopkins. On Tuesday I told you all that I had a cold. In the early evening hours of the prior day my temperature sneaked above the 38-degrees celsius threshold (100.4 degrees farenheit) for being considered a fever worth worrying about. I posted a 38.1. This happened in about the 8th hour of a 9 or 10 hour day as an outpatient. They halted my blood transfusion fearing that I was having a reaction and they drew blood so they could culture it and learn whether there was infection worth worrying about.
On Tuesday evening I received a call at 10:00 Pm from the attending physician who informed me that one of the cultures had started to grow and he was toying with the idea of having me come in that night! I was able to dissuade him since my temperature had not since crept above the 38-degree threshold (it hadn't crept above that threshold prior to that measurement either) and since I had an outpatient appointment scheduled just 11 hours from the time of his call.
Wednesday's appointment saw me in radiology for a CT scan of my chest and sinuses (looking for sources of infection) and receiving a blood transfusion since they ruled out my having a reaction as the source of the elevated temperature. Also while I was there more details began to surface about the infection I have. From the culture they are pretty certain that I have a bacterial infection in one, or both, of my Hickman lines. This involves one regimen of antibiotics. Additionally, the CT scan revealed that my lungs had a "pre-pneumonia" condition where fluid was beginnning to build--no doubt from the cold I had been suffering through. This involves a second regimen of antibiotics.
Both of these regimen require medication that is infused intravenously and a new set of procedures, skills, etc at home. Marla and I will be getting less sleep than normal over the next two weeks so if we look or sound tired and/or grumpy please cut us some slack.
For what it is worth I woke up this morning having no elevated temperature at all, less of a runny nose, and fewer coughs. Hopefully the cold is pretty well behind me and the treatment of these infections is as academic as the nurses make it sound . . .
--Russ.
Tuesday, February 3, 2009
Update
Good Morning all:
Just a quick update: The wait for my counts to return continues. I believe that I am on the verge of that recovery though I also suspect that I will have the normal delay in waiting for my platelets to return so that I might start the next round of chemotherapy.
I've been getting a fair number of transfusions (platelets and red blood cells) recently and I can see that my body is handling the B-cycle of treatment less well than it did the first or second time. My chief complaint at this time, however, is that I happened to wander into a cold virus while I don't have the white blood cells to combat it. I suspect that its a wimpy little cold that will quickly be vanquished once I've got WBCs but for now its running rampant and causing the nose to run, sneezes, coughs, headaches . . .
In any event, I'm trying to follow doctor's orders and to drink fluids and get plenty of rest.
--Russ.
Just a quick update: The wait for my counts to return continues. I believe that I am on the verge of that recovery though I also suspect that I will have the normal delay in waiting for my platelets to return so that I might start the next round of chemotherapy.
I've been getting a fair number of transfusions (platelets and red blood cells) recently and I can see that my body is handling the B-cycle of treatment less well than it did the first or second time. My chief complaint at this time, however, is that I happened to wander into a cold virus while I don't have the white blood cells to combat it. I suspect that its a wimpy little cold that will quickly be vanquished once I've got WBCs but for now its running rampant and causing the nose to run, sneezes, coughs, headaches . . .
In any event, I'm trying to follow doctor's orders and to drink fluids and get plenty of rest.
--Russ.
Friday, January 30, 2009
Surgeon General's Warning: Beware of the irony . . .
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.
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.
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.
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