"It must be absolutely terrifying sometimes" my mom said yesterday as we were leaving my outpatient appointment at Hopkins.
I responded with the truth. It is terrifying--sometimes. There are short bursts of terror when I allow myself to dwell on what I'm up against and what falling short of recovery means. I suppose there are other sorts of terror that lurk within the process of being treated for cancer that many wouldn't use "terror" to describe: admitting publicly that you are very seriously ill when you have been healthy all your life, checking into a hospital and becoming a cancer patient for the first time, trying to figure out how to learn to accept charitable offers with both grace and dignity when you've never asked for, or needed it, in the past.
Even as I read back over the previous paragraph those last three don't seem to measure up to being made very, very aware of your mortality and yet I will say that I have spent much more time dealing with them than I have the severity of my illness. I myself wonder at times if I am simply avoiding the topic of mortality. How can it be that there are times where I am able to practically forget about Acute Lymphoblastic Lymphoma?
I have thought about this lack of doom-dwelling long before my mom and I had our conversation yesterday. I believe that the explanation lies in the fact that I have thrown myself into the effort of being cured of cancer. Each day is a new little battle where I have to do things differently--I'm not going to work, I'm eating different foods, I'm taking lots of medicine, and I'm making sacrifices like not going to the kids' halloween parades tomorrow (in favor of a spinal tap, I might add). These are all battles aimed at winning the war. Many of the comments I have received regarding my posts mention my positive outlook. Aside from my optimistic tendencies, my outlook is positive out of the necessity to sustain my daily efforts and because I have yet to receive any reason why it should be otherwise.
I cannot think of any way that I could endure the daily battles or the larger war if I spent my days focused on the potential negative outcomes. I'm not sure I understand how anyone could.
--Russ.
P.S. Thank you all for continuing to read my blog (over 800 visits so far on Caring Bridge alone), voicing your support, and cheering me on. It makes a big difference and it is why I make visiting my blogs part of my morning routine as I head off to battle.
Thursday, October 30, 2008
Tuesday, October 28, 2008
Update
Good Morning!
Well, it took all day yesterday to come to the determination that I was able to come home. My body needed to get rid of the primary chemo drug that I was given on this round. By the time the test was taken, analyzed, and a decision made it was almost 4:00. But the doctors decided to release me and so I got home around 7:45 last night!
Did I ever sleep. I pretty much went to bed at 8:30 and slept for 10 hours--something I never do. It amazes me just how hard it is to sleep in a hospital.
Just an upate on my prior post about my case being boring. Yesterday they skipped me altogether on rounds--I'll take it.
Finally, I'll be curious to see what side effects I get on this round of treatment. The chemo drugs and steroids they are using on this regimen are different. The mouth sores are a bit more common on this one from what I understand. Fortunately I'm not seeing any of those yet.
I already have gotten 'puffy' from the steroid they've given me--I put on 10 pounds of water weight in one day. The doctors didn't believe me until they reviewed the charts! Let's hope that is about as exciting as the side effects get since my primary doctor indicates that my reactions to these first times through the two regimen will pretty much dictate what I can expect for the remaining treatments.
Well, it took all day yesterday to come to the determination that I was able to come home. My body needed to get rid of the primary chemo drug that I was given on this round. By the time the test was taken, analyzed, and a decision made it was almost 4:00. But the doctors decided to release me and so I got home around 7:45 last night!
Did I ever sleep. I pretty much went to bed at 8:30 and slept for 10 hours--something I never do. It amazes me just how hard it is to sleep in a hospital.
Just an upate on my prior post about my case being boring. Yesterday they skipped me altogether on rounds--I'll take it.
Finally, I'll be curious to see what side effects I get on this round of treatment. The chemo drugs and steroids they are using on this regimen are different. The mouth sores are a bit more common on this one from what I understand. Fortunately I'm not seeing any of those yet.
I already have gotten 'puffy' from the steroid they've given me--I put on 10 pounds of water weight in one day. The doctors didn't believe me until they reviewed the charts! Let's hope that is about as exciting as the side effects get since my primary doctor indicates that my reactions to these first times through the two regimen will pretty much dictate what I can expect for the remaining treatments.
Sunday, October 26, 2008
Staying under the radar
One of the daily occurrences in a teaching hospital is the ritual review of each patient's case. The Attending Physician leads a team of Residents, Med Students and Nurses around to review each patient's case on the ward. Typically this means that you have a conversation with the Attending Physician each day but often it is in the presence of about 10 people!
Yesterday, my visit by the Attending Physician and her entourage wasn't quite the same. Instead of the normal crew of faces, many of whom I don't see except on rounds, it was the Attending Physician, the Resident that was on floor at that time, the Charge Nurse, and my Nurse. That's it. Four. Now, it was Saturday so the people that might expected to join rounds could be smaller as a result but when I greeted the Resident with "hail, hail the gang's all here" she replied, "there aren't many of us". When I saw how small the group was I asked, "Not a very interesting case?" The attending's reply confirmed for me what I've been coming to recognize in this process: "You don't want to be an interesting case."
And she's right. If being interesting means having complications, delays, or worse lack of success in removing the cancer then I'm glad to be particularly boring. So far so good on that front. There are no complications and my side-effects from chemo have been so minimal as to be considered non-existent. The progress or effectiveness of my treatment has yet to be measured--that will not occur for a couple more rounds.
For now, I'll take hearing that my case is not interesting and that I continue to appear strong and healthy for a cancer patient. Perhaps I'll be the most unremarkable cure yet.
Yesterday, my visit by the Attending Physician and her entourage wasn't quite the same. Instead of the normal crew of faces, many of whom I don't see except on rounds, it was the Attending Physician, the Resident that was on floor at that time, the Charge Nurse, and my Nurse. That's it. Four. Now, it was Saturday so the people that might expected to join rounds could be smaller as a result but when I greeted the Resident with "hail, hail the gang's all here" she replied, "there aren't many of us". When I saw how small the group was I asked, "Not a very interesting case?" The attending's reply confirmed for me what I've been coming to recognize in this process: "You don't want to be an interesting case."
And she's right. If being interesting means having complications, delays, or worse lack of success in removing the cancer then I'm glad to be particularly boring. So far so good on that front. There are no complications and my side-effects from chemo have been so minimal as to be considered non-existent. The progress or effectiveness of my treatment has yet to be measured--that will not occur for a couple more rounds.
For now, I'll take hearing that my case is not interesting and that I continue to appear strong and healthy for a cancer patient. Perhaps I'll be the most unremarkable cure yet.
Saturday, October 25, 2008
Greetings from Hopkins
So, I'm here. Saline, Chemo, and some anti-nausea medicine are flowing--round 2 is underway. As usual, sleep is a little hard to come by in the hospital so I'm awake early and a bit tired. Otherwise, I know what to expect this time around and all is proceeding according to plan. When this is done I'll be one quarter of my way through the process with at least some hints that if my recovery from chemo goes as it did in round 1 it could actually speed up some!
I must say that I am routinely impressed by my care team here at Hopkins. My Doctors are quite good and clearly have reputations and abilities that rank them among the tops in the country. But more frequently I interact with the team of nurses that have been assigned to me. They are knowledgeable, attentive, and always armed with the "I don't know but I'll find out for you" answer and the energy to follow up with me.
On a side note, I must have received a cancer-patient promotion or something. My room is bigger than last time and I've got a water view! I'll try to take a picture when the sun comes up with my phone and post on the blogger site.
I must say that I am routinely impressed by my care team here at Hopkins. My Doctors are quite good and clearly have reputations and abilities that rank them among the tops in the country. But more frequently I interact with the team of nurses that have been assigned to me. They are knowledgeable, attentive, and always armed with the "I don't know but I'll find out for you" answer and the energy to follow up with me.
On a side note, I must have received a cancer-patient promotion or something. My room is bigger than last time and I've got a water view! I'll try to take a picture when the sun comes up with my phone and post on the blogger site.
Friday, October 24, 2008
Update
. . . and as soon as I post that I get a call from Hopkins saying they're ready for me. Zoom!
--Russ.
--Russ.
Definitely Maybe
I got a call from Hopkins last night saying that I am definitely going in today. However, it seems like each time I am scheduled for the in-patient stuff I'll need to 'wait' for a bed to open up. This means that the Doctors complete their rounds by about 10:00 and begin the discharge process for those who are getting kicked out. Once they figure out how many beds are opening up then they begin the triage process for inviting folks in. So, for those keeping score, I'll be home for most of today and will likely head up to Baltimore sometime in the afternoon/early evening.
Next post from Hopkins!
--Russ.
Next post from Hopkins!
--Russ.
Thursday, October 23, 2008
Brief Update
Perhaps a little less time for the type of introspection I've done the past couple of mornings. I am still proceding under the assumption that I'll return to the hospital tomorrow. As such, I need to pull items together to take with me (where's that laptop?), and set a few things in order around the house to make temporary single parenthood manageable for Marla.
I'll be back on line from the Hospital and will be certain to update "Where's Russ" when I know definitively where I'll be tomorrow.
--Russ.
I'll be back on line from the Hospital and will be certain to update "Where's Russ" when I know definitively where I'll be tomorrow.
--Russ.
Wednesday, October 22, 2008
Remission Control
My last day of work was October 1st. On that day I scrambled to compile all of my open items and to have some sembalance of an organized hand-off to my employer. As I was winding down and getting set to leave for 24 weeks of chemo treatments a co-worker hit me with a flurry of phone calls. "This will be hard for you. You are a control person." she said during one of them. Initially I took this from her to mean I was controlling or somehow unable to delegate. As we talked I realized, however, that she had made an observation of me that I was only starting to make of myself.
Days before, as I went through CT Scans, PET Scans, Blood Tests, Marrow Checks and one physician handed me off to the next one in line I became very aware of how little control I had in this process. I had no expertise or knowledge to bring to bear on the situation, no actions that I could undertake to speed or improve the process, and it was pretty clear that this was not the time to think 'out-of-the-box'. As I sat in one doctor's office I wracked my brain for just what it was that I COULD control. I came up with two: I can control my attitude and I can make my body available for treatment.
When I checked into Hopkins and had my first conversation regarding my treatment with team of doctors I presented these two sparse spheres of control and practically pleaded with them to contrive more for me. I prompted with 'Nutrition, perhaps' and was greeted with a solemn shake of the head. Instead they concurred that the two I had come up with seemed like a pretty full and complete list.
Now that I'm several weeks into this and have had more opportunity for introspection I suppose that I have not yet come up with other areas where I control the outcome of my treatment. I do think that there is more to controlling my attitude than what I had originally meant.
At the time of my initial brainstorming 'controlling my attitude' meant more about keeping a positive outlook and being helpful as a patient or maybe even more succinctly: don't get grumpy. Many responses to what I have written thus far have remarked on my outlook, attitude, upbeat nature and, in truth, it simply is not in my nature to be grumpy.
Controlling my attitude has taken on much more meaning in the intervening days. It now includes making smart use of my energies (now, while I have plenty and obviously later when I won't), and keeping myself from becoming a hermit by blogging, e-mailing, and checking in at work. It also means looking for ways to be part of the solution by being an educated patient, a savvy consumer of health insurance, and an active participant in the broader effort to find better treatments and cures for my illness through charities like the Leukemia and Lymphoma Society.
As I've started shovelling concepts and related activities under the broader heading of 'controlling my attitude' I have found that the unsettling feeling of being out of control has abated and in its place is a sense of confidence that I will get better and that I will successfully weather all that this illness, the medicinces, and the doctors can throw at me.
Days before, as I went through CT Scans, PET Scans, Blood Tests, Marrow Checks and one physician handed me off to the next one in line I became very aware of how little control I had in this process. I had no expertise or knowledge to bring to bear on the situation, no actions that I could undertake to speed or improve the process, and it was pretty clear that this was not the time to think 'out-of-the-box'. As I sat in one doctor's office I wracked my brain for just what it was that I COULD control. I came up with two: I can control my attitude and I can make my body available for treatment.
When I checked into Hopkins and had my first conversation regarding my treatment with team of doctors I presented these two sparse spheres of control and practically pleaded with them to contrive more for me. I prompted with 'Nutrition, perhaps' and was greeted with a solemn shake of the head. Instead they concurred that the two I had come up with seemed like a pretty full and complete list.
Now that I'm several weeks into this and have had more opportunity for introspection I suppose that I have not yet come up with other areas where I control the outcome of my treatment. I do think that there is more to controlling my attitude than what I had originally meant.
At the time of my initial brainstorming 'controlling my attitude' meant more about keeping a positive outlook and being helpful as a patient or maybe even more succinctly: don't get grumpy. Many responses to what I have written thus far have remarked on my outlook, attitude, upbeat nature and, in truth, it simply is not in my nature to be grumpy.
Controlling my attitude has taken on much more meaning in the intervening days. It now includes making smart use of my energies (now, while I have plenty and obviously later when I won't), and keeping myself from becoming a hermit by blogging, e-mailing, and checking in at work. It also means looking for ways to be part of the solution by being an educated patient, a savvy consumer of health insurance, and an active participant in the broader effort to find better treatments and cures for my illness through charities like the Leukemia and Lymphoma Society.
As I've started shovelling concepts and related activities under the broader heading of 'controlling my attitude' I have found that the unsettling feeling of being out of control has abated and in its place is a sense of confidence that I will get better and that I will successfully weather all that this illness, the medicinces, and the doctors can throw at me.
Tuesday, October 21, 2008
The hard job belongs to the family
Those who spoke to me early on following my diagnosis probably recall that one of the over-riding concerns I had included little to do with me but instead focused on what effects all these lifestyle changes would have on my family.
Initially I struggled with how to tell my children (ages 4 and 7) that daddy was as sick as he is, without being unfairly vague or even dismissive of their need to know and understand what was happening. I worried extensively about Nolan's ability to make soccer practices and games and to do all the things that 7-year olds with healthy fathers are supposed to do. I worried about the fear that my eventual hair-loss and other physical signs of my illness would cause my children. I even planned responses for the conflicting and possibly scary messages my kids might receive from well-meaning adults.
I stressed over the disruption in the routines. How could my exhaustive treatment regimen possibly be incorporated into our daily lives with acceptable outcomes (arriving to school on time, completing homework, eating meals)? Would Nolan's academics suffer? Would Audrey regress a bit, behaviorally?
The 'what-ifs' and the 'oh dears' in being treated for cancer seem to stem from those items that we spend our regular daily lives trying to control and that are just a quick nudge away from chaos. I maintain that Marla has the difficult job of the two of us since, as a patient, my path has been well laid-out for me and the consequences for not staying on that treatment path would be unmistakable and unerring.
But having written all of this, it is evident to me now that my family is handling it pretty well. Marla is getting to work, the kids to school. Clothes are washed, dinners--healthy ones--are cooked, and homework is completed. Families are resilient and routines are what we make of them. We've simplified and changed some things around. We've all made sacrifices in the early going. In the end I suppose there is another lesson learned: stop worrying about 'how its gonna be' and instead set the priorities as a family, make your choices, lean on each other for support, and make it happen.
I would like to thank everyone who continues to support Marla with words, meals, actions, offers of actions, thoughts and/or prayers. I am fortunate to have her as a wife (and nurse). She is shouldering quite a bit and doing an admirable job. I am a lucky, lucky man.
Initially I struggled with how to tell my children (ages 4 and 7) that daddy was as sick as he is, without being unfairly vague or even dismissive of their need to know and understand what was happening. I worried extensively about Nolan's ability to make soccer practices and games and to do all the things that 7-year olds with healthy fathers are supposed to do. I worried about the fear that my eventual hair-loss and other physical signs of my illness would cause my children. I even planned responses for the conflicting and possibly scary messages my kids might receive from well-meaning adults.
I stressed over the disruption in the routines. How could my exhaustive treatment regimen possibly be incorporated into our daily lives with acceptable outcomes (arriving to school on time, completing homework, eating meals)? Would Nolan's academics suffer? Would Audrey regress a bit, behaviorally?
The 'what-ifs' and the 'oh dears' in being treated for cancer seem to stem from those items that we spend our regular daily lives trying to control and that are just a quick nudge away from chaos. I maintain that Marla has the difficult job of the two of us since, as a patient, my path has been well laid-out for me and the consequences for not staying on that treatment path would be unmistakable and unerring.
But having written all of this, it is evident to me now that my family is handling it pretty well. Marla is getting to work, the kids to school. Clothes are washed, dinners--healthy ones--are cooked, and homework is completed. Families are resilient and routines are what we make of them. We've simplified and changed some things around. We've all made sacrifices in the early going. In the end I suppose there is another lesson learned: stop worrying about 'how its gonna be' and instead set the priorities as a family, make your choices, lean on each other for support, and make it happen.
I would like to thank everyone who continues to support Marla with words, meals, actions, offers of actions, thoughts and/or prayers. I am fortunate to have her as a wife (and nurse). She is shouldering quite a bit and doing an admirable job. I am a lucky, lucky man.
Monday, October 20, 2008
Blogspot as new Visit Russ venue?
All:
If you are seeing this message it might be because you followed a link from my Caring Bridge site. This is my blogger version of my blog. The goal remains the same, to inform everyone what is going on, to provide me an outlet, and, in the case of blogger to allow for more 'projects' and interactions along the way. As promised on Caring Bridge, if you are looking here you should be able to find the clamored for Russ-with-a-mohawk pictures. Please feel free to wander around this version and let me know what you think and if you have ideas for enhancements.
--Russ.
If you are seeing this message it might be because you followed a link from my Caring Bridge site. This is my blogger version of my blog. The goal remains the same, to inform everyone what is going on, to provide me an outlet, and, in the case of blogger to allow for more 'projects' and interactions along the way. As promised on Caring Bridge, if you are looking here you should be able to find the clamored for Russ-with-a-mohawk pictures. Please feel free to wander around this version and let me know what you think and if you have ideas for enhancements.
--Russ.
Saturday, October 18, 2008
Good News!
I had a follow up visit at Hopkins yesterday. My bloodcounts rebounded quickly and I am well on my way to round 2 of chemotherapy. I even get a week off of follow up visits, can back off on about 7 medications I've been taking daily, and could show my face in public!
So far it seems that my body is handling the dosing well, not betraying me by giving in to the nasty side-effects (hair loss aside), and is staying strong. I am coming to realize that this, along with a smooth, unremarkable movement through the plan my doctors have for me is probably what I should be shooting for. 1/8 of the treatment is behind me and I'm encouraged for similar results in what remains to be experienced.
For those who are interested, I added a link in the links section to a web page that details the treatment plan that I am on. 8 rounds of chemo, 2 different cycles that alternate within those 8 rounds. Round 2 is likely to begin with a hospital stay beginning Friday, October 24th that would last that weekend and perhaps through Monday.
So far it seems that my body is handling the dosing well, not betraying me by giving in to the nasty side-effects (hair loss aside), and is staying strong. I am coming to realize that this, along with a smooth, unremarkable movement through the plan my doctors have for me is probably what I should be shooting for. 1/8 of the treatment is behind me and I'm encouraged for similar results in what remains to be experienced.
For those who are interested, I added a link in the links section to a web page that details the treatment plan that I am on. 8 rounds of chemo, 2 different cycles that alternate within those 8 rounds. Round 2 is likely to begin with a hospital stay beginning Friday, October 24th that would last that weekend and perhaps through Monday.
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