Good Afternoon All:
Sorry for the long delay in posts. I am thoroughly enjoying life without the every-other-day trips to Hopkins. I have returned to work pretty much full time and am coaching baseball with reckless abandon. Everyone is asking me if I'm tired. I can pretty much keep a busy schedule during the day. I do fade in the evenings and am compelled to go to bed a little earlier than I had been. But that is a mere incovenience, a small price to pay for leading an active and productive life again.
I happen to be writing this from Hopkins. Today I came up here for an early morning appointment to get a PET Scan done and also a bone marrow biopsy. These are the tests that I have been waiting for--the final 'did it work' sort of tests. In true Russ at Hopkins fashion I did get a little bit of a surprise. They did routine blood work and found that I need some red blood cells--so I'll be here a while. Guess this isn't a switch that gets thrown and all of the sudden I'm healthy and without effects from the chemotherapy.
In any event, several new milestones are on the horizon. The test results should be back this week. Assuming those go well the next major step is to get the catheter taken out of my chest. This is a HUGE deal as I'll go back to living life without the physical restrictions that I've had for over half a year: no getting wet, no swimming, no physical activity that involves intense use of the chest muscles or repetitive motion.
Finally, in a couple of weeks I'll meet with my physician here at Hopkins and presumably will transition from active treatment to maintenance therapy. That will mark the major change from frequent monitoring to quarterly appointments.
Thanks for reading and keeping up with me. I would assume that my busier life-style will cause my posts to be fewer and further between but I do hope to keep the blogs going for a while longer. I have yet to figure out when and how they should stop.
--Russ.
Monday, April 27, 2009
Wednesday, April 15, 2009
An Update
Good Afternoon All:
Well, I've gotten a run of good news following my brief hospitalization. First of all, I was only an inpatient about 24 hours and I came home around dinner time yesterday evening.
Today, I had a scheduled out-patient visit that was to serve as a follow up to the suspected infection that caused the fever that led to my hospitalization. I learned today that not only do my doctors and nurses feel that I probably don't have any infection, but my counts are up above critical levels to where my risk of infection is much lower. This should be the last time that I need to deal with the challenges of being neutropenic.
As a result I am able to make good on my plans to make my first appearance back at work tomorrow and to coach my son's baseball team during their first game this weekend!
Well, I've gotten a run of good news following my brief hospitalization. First of all, I was only an inpatient about 24 hours and I came home around dinner time yesterday evening.
Today, I had a scheduled out-patient visit that was to serve as a follow up to the suspected infection that caused the fever that led to my hospitalization. I learned today that not only do my doctors and nurses feel that I probably don't have any infection, but my counts are up above critical levels to where my risk of infection is much lower. This should be the last time that I need to deal with the challenges of being neutropenic.
As a result I am able to make good on my plans to make my first appearance back at work tomorrow and to coach my son's baseball team during their first game this weekend!
Tuesday, April 14, 2009
Bumps ahead
Good Morning All:
Believe it or not I'm posting from Hopkins. During what should still be one of my final 3-times-per-week outpatient visits I developed a fever. They tried to keep me from being admitted but my fever grew worse and they decided it was best to admit me so they can monitor my fever and give me some strong antibiotics since I currently have no natural illness fighting capabilities. Just like my other hospital admission for a fever, I have not had a fever over the magic 100.4 since I was admitted--a good sign. I asked the doctors about the odds of me going home after just one day and was told that they normally like to see 48 hours of being fever free. No matter how I do the math I can't seem to get to 48 hours of being monitored at any point today.
When it became pretty clear that I was going to get admitted yesterday I thought of a sign I had seen in my neighborhood recently. I had started taking walks almost daily to try and get my stamina up for work and the activities of daily life. During one of these walks I noticed a sign that said "Bumps" alerting the driver that there were speed bumps ahead. I hadn't seen the sign before--was it an omen? Hard to know for sure though if it was I don't like the plurality of the omen.
In the end, this shouldn't really delay things aside from the physiological effects of having some sort of infection (white blood cells are being sent into the breach as soon as they are made, and platelets are fragile). I am still at the mercy of my white blood cell counts returning to an acceptable level and then I plan on returning to my normal activities.
--Russ.
Believe it or not I'm posting from Hopkins. During what should still be one of my final 3-times-per-week outpatient visits I developed a fever. They tried to keep me from being admitted but my fever grew worse and they decided it was best to admit me so they can monitor my fever and give me some strong antibiotics since I currently have no natural illness fighting capabilities. Just like my other hospital admission for a fever, I have not had a fever over the magic 100.4 since I was admitted--a good sign. I asked the doctors about the odds of me going home after just one day and was told that they normally like to see 48 hours of being fever free. No matter how I do the math I can't seem to get to 48 hours of being monitored at any point today.
When it became pretty clear that I was going to get admitted yesterday I thought of a sign I had seen in my neighborhood recently. I had started taking walks almost daily to try and get my stamina up for work and the activities of daily life. During one of these walks I noticed a sign that said "Bumps" alerting the driver that there were speed bumps ahead. I hadn't seen the sign before--was it an omen? Hard to know for sure though if it was I don't like the plurality of the omen.
In the end, this shouldn't really delay things aside from the physiological effects of having some sort of infection (white blood cells are being sent into the breach as soon as they are made, and platelets are fragile). I am still at the mercy of my white blood cell counts returning to an acceptable level and then I plan on returning to my normal activities.
--Russ.
Wednesday, April 8, 2009
The fear . . .
Good Morning All:
As this blog is an outlet for me, I feel it is time to share the darker, haunting side of dealing with a cancer diagnosis. This post has been brewing for quite some time but until now I have not been 'in the right place' to write the words and deal with the topic.
In my less-upbeat moments, when perhaps I quietly wonder about what caused the cancerous cells to start growing and what might cause them to start back up in the future, there is a typical unease that will begin to take hold. I've thought of many analogies for it and will share a few before I'm done writing, but suffice to say that this unease can and has been a consuming worry for me at times. It has already darkened my mood for several days once already and I don't believe that it will ever completely leave me alone.
I have received what I consider to be outstanding care at Johns Hopkins. I have placed a tremendous amount of trust in their abilities and continue to be confident that they will deliver the best possible results in my case. For over six months now, the staff at Hopkins have been carefully monitoring me and my body. Seemingly benign symptoms were scrutinized and worried over. C/T Scans were ordered for insignificant viruses that elevated my body temperature to a measly 100.4 degrees. Red blood cells and/or platelets were transfused when the levels dropped too low. My catheter was replaced at the first sign that it might be moving. The breadth and depth of their experience and knowledge has required me to submit to their judgment on many occasions.
In the very near future my interactions with Hopkins will drop from several times per week to several times per year. If tests to be run within the next couple of weeks show that both my bone marrow and lymph nodes appear to be cancer-free, then I will be sent home with lower dose oral chemotherapy, some steroids and an appointment to come back in three months. But the possibility that cancer could return won't dissipate like the nurses had performed an exorcision. I'll carry that concern home with me along with the prescriptions.
While I intend to learn as much as I can from the doctors and nurses on how to spot early symptoms that cancer may have returned, I cannot learn in a short time what they have learned as an institution over decades. Just like it was before I was diagnosed, I will be responsible for monitoring myself. Only this time I will have to do that with the full knowledge of what could be. I'll be like the child that is riding the bike without training wheels and has already fallen once. I like the freedom of riding the bike, but I'm still a little unsteady and my knees have been bloodied and bandaged.
Before my diagnosis there was still quite a bit of the bullet-proof teen left in me. That self-confidence that my body couldn't/wouldn't fail me has been replaced with the knowledge that it could again. The uncertainty of what would make that happen in the future can move the needle on the gauge from concern to fear, when I allow it.
Some time ago I was having pains in my chest that felt very, very similar to the ones that drove me to the doctor back in September and led to my lymphoma diagnosis. One night, after the kids had gone to bed, I told my wife that I was worried about the pains and that she should prepare to hear that I had relapsed. In a very necessary reversal of roles, Marla quietly 're-diagnosed' my symptoms (correctly, I might add) and more importantly bolstered me in a way that allowed me to recover the 'attitude' that has carried me for the past 6 months. I don't doubt that I will need her services in this role in the future--again, I'll say I'm lucky to have her around.
I feel I've changed quite a bit over the past six months. It will be interesting to see what will happen when the new Russ re-enters the world of the old Russ. I'm sure there will be times where my actions/reactions will seem foreign or unexpected by co-workers, friends, colleagues. Perhaps there will be times where the things that I do or say seem out of place, even to me, as I apply a new set of life experiences to a common problem or task at work.
Only recently have I been able to hold onto the 'attitude' when I look this transition to the Maintenance regimen in the eye. I am an optimist by nature and perhaps some of the good things that I've been able to re-assume are carrying me: coaching Nolan's team, returning to work (I've set a tentative plan for that), not worrying about the timing of the next hospitalization are all examples. But even the less-momentous, more mundane tasks (like doing the grocery shopping again) look oh-so-different to me these days and serves as a counter to the concern that would otherwise nibble away at me.
Yesterday I received a card from a family member on Marla's side who is also a cancer survivor. In her note, she took the opportunity to congratulate me on having finished my last hospitalization but she also wished for me to "retain the sense of how wonderful your life really is, which comes when you have a major health crisis and get past it." I think this sentiment captures what I am beginning to feel as I emerge from my chemotherapy regimen and I'm thankful for her well-timed blessing.
In the end there will always be a lingering fear of cancer's return. I've read enough 'survivorship tales' to recognize that this is the case. But with all that I'll be returning to, and the new vantage point on life that I've acquired, I'm pretty confident that my moments of dwelling on that fear will be limited. Thanks to all who have led me to this point.
--Russ.
As this blog is an outlet for me, I feel it is time to share the darker, haunting side of dealing with a cancer diagnosis. This post has been brewing for quite some time but until now I have not been 'in the right place' to write the words and deal with the topic.
In my less-upbeat moments, when perhaps I quietly wonder about what caused the cancerous cells to start growing and what might cause them to start back up in the future, there is a typical unease that will begin to take hold. I've thought of many analogies for it and will share a few before I'm done writing, but suffice to say that this unease can and has been a consuming worry for me at times. It has already darkened my mood for several days once already and I don't believe that it will ever completely leave me alone.
I have received what I consider to be outstanding care at Johns Hopkins. I have placed a tremendous amount of trust in their abilities and continue to be confident that they will deliver the best possible results in my case. For over six months now, the staff at Hopkins have been carefully monitoring me and my body. Seemingly benign symptoms were scrutinized and worried over. C/T Scans were ordered for insignificant viruses that elevated my body temperature to a measly 100.4 degrees. Red blood cells and/or platelets were transfused when the levels dropped too low. My catheter was replaced at the first sign that it might be moving. The breadth and depth of their experience and knowledge has required me to submit to their judgment on many occasions.
In the very near future my interactions with Hopkins will drop from several times per week to several times per year. If tests to be run within the next couple of weeks show that both my bone marrow and lymph nodes appear to be cancer-free, then I will be sent home with lower dose oral chemotherapy, some steroids and an appointment to come back in three months. But the possibility that cancer could return won't dissipate like the nurses had performed an exorcision. I'll carry that concern home with me along with the prescriptions.
While I intend to learn as much as I can from the doctors and nurses on how to spot early symptoms that cancer may have returned, I cannot learn in a short time what they have learned as an institution over decades. Just like it was before I was diagnosed, I will be responsible for monitoring myself. Only this time I will have to do that with the full knowledge of what could be. I'll be like the child that is riding the bike without training wheels and has already fallen once. I like the freedom of riding the bike, but I'm still a little unsteady and my knees have been bloodied and bandaged.
Before my diagnosis there was still quite a bit of the bullet-proof teen left in me. That self-confidence that my body couldn't/wouldn't fail me has been replaced with the knowledge that it could again. The uncertainty of what would make that happen in the future can move the needle on the gauge from concern to fear, when I allow it.
Some time ago I was having pains in my chest that felt very, very similar to the ones that drove me to the doctor back in September and led to my lymphoma diagnosis. One night, after the kids had gone to bed, I told my wife that I was worried about the pains and that she should prepare to hear that I had relapsed. In a very necessary reversal of roles, Marla quietly 're-diagnosed' my symptoms (correctly, I might add) and more importantly bolstered me in a way that allowed me to recover the 'attitude' that has carried me for the past 6 months. I don't doubt that I will need her services in this role in the future--again, I'll say I'm lucky to have her around.
I feel I've changed quite a bit over the past six months. It will be interesting to see what will happen when the new Russ re-enters the world of the old Russ. I'm sure there will be times where my actions/reactions will seem foreign or unexpected by co-workers, friends, colleagues. Perhaps there will be times where the things that I do or say seem out of place, even to me, as I apply a new set of life experiences to a common problem or task at work.
Only recently have I been able to hold onto the 'attitude' when I look this transition to the Maintenance regimen in the eye. I am an optimist by nature and perhaps some of the good things that I've been able to re-assume are carrying me: coaching Nolan's team, returning to work (I've set a tentative plan for that), not worrying about the timing of the next hospitalization are all examples. But even the less-momentous, more mundane tasks (like doing the grocery shopping again) look oh-so-different to me these days and serves as a counter to the concern that would otherwise nibble away at me.
Yesterday I received a card from a family member on Marla's side who is also a cancer survivor. In her note, she took the opportunity to congratulate me on having finished my last hospitalization but she also wished for me to "retain the sense of how wonderful your life really is, which comes when you have a major health crisis and get past it." I think this sentiment captures what I am beginning to feel as I emerge from my chemotherapy regimen and I'm thankful for her well-timed blessing.
In the end there will always be a lingering fear of cancer's return. I've read enough 'survivorship tales' to recognize that this is the case. But with all that I'll be returning to, and the new vantage point on life that I've acquired, I'm pretty confident that my moments of dwelling on that fear will be limited. Thanks to all who have led me to this point.
--Russ.
Friday, April 3, 2009
At last . . .
The spinal taps and hospital stays are over. I'm relieved to be home without any similar burdens on the horizon. There is little more to say today that is more important than that.
--Russ.
--Russ.
Wednesday, April 1, 2009
The delay in the rearview mirror
Good Morning All:
Thanks for all the well wishes I've been receiving as I start my final round of chemo. The chemo was hung last night and it continues to flow. I'll be receiving my 12th and final spinal tap in about an hour--man, I'll be happy to cross that one off the list!
I wanted to get back to a more introspective post now that this 3-week delay is behind me . . .
As my mom drove me to Hopkins yesterday she surmised that the timing of this delay, right as I reached the end of the process, must have made it particularly tough to deal with. I will concur that it was difficult to stomach just as I was beginning to anticipate life following the chemo regimen.
I will add, however, that I was infinitely better prepared to deal with such a delay now than I would have been in round 2 or 3, for example. I have been through this process now for 8 cycles over 6 months and I have seen quite a bit and learned much about the process and what variables are at play at any given time. While this last delay was frustrating, I at least understood what was happening and could put it in perspective. At the very least I was able to keep my sights set on life following round 8.
On the other hand, had this delay occurred at the outset, while I was still formulating my goals of coaching Nolan's team, getting back to work, etc. frustration may have given way to despair. I can't be certain how I would have responded to early setbacks but I would have to assume that the confidence and upbeat outlook that carried me through this process would have been harder to find and maintain. Without the 'attitude' that I've come to rely on I am not certain that the treatments would have been as smooth or, scary to think, as successful as they have been.
As I sit in my hospital room and contemplate the 8th and final in-patient treatment I also can find reason to be thankful that the majority of the delay was caused by an illness that I might have been just as likely to get had cancer never been in the picture. Sure, part of the delay was the typical waiting for platelets and the recovery from pneumonia and flu might have been slowed by the lack of white blood cells. But those are temporary suppressions of the same blood-producing system. That should return to normal as the chemicals leave my body. In the end, I can look back at the last few weeks and still say that I am physically strong as I prepare to finish my chemotherapy regimen. That was probably the first goal I set for myself: that I can finish this process with one of the same mantras I had when I began it . . . "I am not frail."
Thanks for all the well wishes I've been receiving as I start my final round of chemo. The chemo was hung last night and it continues to flow. I'll be receiving my 12th and final spinal tap in about an hour--man, I'll be happy to cross that one off the list!
I wanted to get back to a more introspective post now that this 3-week delay is behind me . . .
As my mom drove me to Hopkins yesterday she surmised that the timing of this delay, right as I reached the end of the process, must have made it particularly tough to deal with. I will concur that it was difficult to stomach just as I was beginning to anticipate life following the chemo regimen.
I will add, however, that I was infinitely better prepared to deal with such a delay now than I would have been in round 2 or 3, for example. I have been through this process now for 8 cycles over 6 months and I have seen quite a bit and learned much about the process and what variables are at play at any given time. While this last delay was frustrating, I at least understood what was happening and could put it in perspective. At the very least I was able to keep my sights set on life following round 8.
On the other hand, had this delay occurred at the outset, while I was still formulating my goals of coaching Nolan's team, getting back to work, etc. frustration may have given way to despair. I can't be certain how I would have responded to early setbacks but I would have to assume that the confidence and upbeat outlook that carried me through this process would have been harder to find and maintain. Without the 'attitude' that I've come to rely on I am not certain that the treatments would have been as smooth or, scary to think, as successful as they have been.
As I sit in my hospital room and contemplate the 8th and final in-patient treatment I also can find reason to be thankful that the majority of the delay was caused by an illness that I might have been just as likely to get had cancer never been in the picture. Sure, part of the delay was the typical waiting for platelets and the recovery from pneumonia and flu might have been slowed by the lack of white blood cells. But those are temporary suppressions of the same blood-producing system. That should return to normal as the chemicals leave my body. In the end, I can look back at the last few weeks and still say that I am physically strong as I prepare to finish my chemotherapy regimen. That was probably the first goal I set for myself: that I can finish this process with one of the same mantras I had when I began it . . . "I am not frail."
Tuesday, March 31, 2009
I've gotten the call!
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.
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.
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.
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