After several lengthy posts and a major holiday I figured I'd just take it easy and get everyone up to speed this AM. I had an appointment at Hopkins yesterday to check blood counts and to determine if I could start round 4 on Monday.
As it turns out my WBCs are again up to Super-Human levels thanks to some nifty pharmaceuticals but my platelets actually dropped a little. My doctor indicated that this tradeoff is fairly common and should right itself over the weekend. This means that they need to check counts again on Monday with the goal of a Tuesday start.
I am anxious to get the in-patient portion of the round over with so that I can move into the part where I begin to get feedback information on the progress of my treatment. I'll be getting some further CT Scans and a bone marrow biopsy all in an effort to gauge just how badly I'm beating cancer. Stay tuned to the blog sites because my efforts to get ESPN to cover the test results have proven unsuccessful.
Since it is new information to me I'll pass this along and sign off: The earlier CT Scan (from my fever-based trip to the hospital) that showed improvement in the lymph nodes in my chest apparently showed was the topic of discussion during my visit yesterday. My Nurse Practitioner shared with me the scan results and interpretations that indicated that nodes that had been measuring over 5 cm were at 8 mm. The most encouraging part is that these changes were seen after just two rounds of treatment! Here's to the hope that the bone marrow cancer cells are just as much in retreat as the lymph nodes!
Saturday, November 29, 2008
Thursday, November 27, 2008
Giving Thanks
It is a little trite, perhaps, to put out a list of things I'm thankful for today. I've been thinking about this all week and feel bolstered in the opinion that it is worthwhile item to share after reading the comments of my co-workers left on the Caringbridge site yesterday.
In year's past, if you asked me what I was thankful for on Thanksgiving I can pretty much assure you that the list would be short: family, friends, the chance to relax midweek, and the opportunity to eat comfort food in one large meal to the point of discomfort. But as I wrote yesterday, priorities have shifted and so here's a different list trying to be both inclusive and specific of the things that I am thankful for today:
1. My family: Marla, Nolan, and Audrey for being both pillars of strength for me and an inspiration to endure all that I must.
2. My parents and parents-in-law: For stepping back into those care-giver roles for me and my family that perhaps you thought you had absolved yourselves of some time ago. The amount of time and energy you have spent is not lost on me.
3. Friends who have stepped in to fill the day-to-day voids: Particularly the Baileys, Conways, Reeves who have done little, and not-so-little, things to help Marla and I achieve our goal of 'normalcy' for our daily family life.
4. The gifts we have received: We've received a bounty of meals, thinking-of-you gifts, baskets, cards, bags, and boxes. These range from very practical to whimsical. Each that arrives have been valued for what they do to sustain us in the intended way. Thank you to all that have sent gifts and cards.
5. The support network: If you are reading this post consider yourself thanked. It may have been the singular most helpful and important decision I made in the early days of my treatment to start these regular postings. While I receive numerous thanks for maintaining these blogs, I will continue to point out that these are therapeutic for me. I enjoy the opportunity to share my thoughts with those who care to know them and have come to cherish the journal entries and comments.
6. The above-and-beyond support from Westat: For the past five years I went to work with very talented, caring, and fun people. I had no expectation for the amount of support I would receive from an employer under such circumstances. I have been routinely 'blown away' by the magnitude of Westat's outpouring of concern both Corporately and from the individuals that I have been fortunate enough to work with. Several groups bear mentioning for admitting to, or orchestrating what seems to be, efforts of outreach--SPS, HRS, OMRG--Thank you.
7. The serendipity of my diagnosis: I had occasion as recently as yesterday to revisit why I went to the doctor on September 22nd. I still cannot pinpoint what drove me to the decision to seek medical treatment for a seemingly benign set of symptoms.
8. The medical care I have received throughout: Starting with the doctors at the clinic who first hit me with the "lymphoma" diagnosis, my primary care physician who orchestrated the following week to get me to a diagnosis, the specialists who pointpointed Acute Lymphoblastic Lymphoma and devised my treatment routine--thank you for my quick start toward a cure. I would like to thank, specifically, my dedicated care team at Hopkins: Dr. Roisin Connolly, Dr. Richard Ambinder and Nurse Practitioner Audra (sorry, Audra, I don't think I ever learned your last name) who direct my care and who have allowed me to have a role in the decisions made. You are all very impressive and skilled clinicians who have astounded me routinely with your willingness and ability to answer my questions with patience, tact, and a straight-forwardness that I had thought missing from the world of medicine. Finally, the legion of Hopkins nurses who have tended to me as either an out- or in-patient. I'm beginning to know many of the names and have come to value highly the knowledge you bring to my daily care. Thank you for your efforts on my behalf.
9. The medical advice from friends: My support network includes several individuals who have medical backgrounds or extensive family histories with cancer and other illnesses. At times issues in my treatment (my first blood transfusion, the spinal taps come to mind) have been discussed in these blogs. Your input on what I have written sets me at ease and calms me for those parts of the process that have been unsettling. Thank you for your willingness to consider what I write and for your thoughtful advice, input, and encouragement.
10. For my strength, energy, and attitude: It may be redundant a bit to touch on these as much of the first 9 items create or sustain them. However, it is a daily occurrence for me to wake up feeling that I am still the same person I was before my diagnosis. When I look in the mirror I do not see a weakened cancer patient ravaged by severe medicines that carry their own damaging side-effects. Instead (after I cover my bald head), I see a seemingly healthy vision of myself--same weight, good spirits and with the ability to get up and do things.
11. Positive 'vibes' in a tough situation: This actually has its genesis outside of my cancer and is intended to stop short of a political discussion. The U.S. is facing major challenges. I have had extra time to pay attention and hold no illusions that any administration can or will have all the answers. I am thankful, instead, for the degree of optimism and hope that the incoming administration seems to be maintaining. I see parallels between the struggles being faced by the U.S. and my personal health situation. In both areas hope and optimism can carry us beyond the tough early going.
I believe I have set down much of what has occurred to me in my Thanksgiving-thinking this week. If you read this on Thanksgiving, I hope you have a great holiday and that what I've written has given you the inspiration to look beyond what's set on the table or on the television for what you are thankful for. If you read this after the holiday, know that I thank you all for the opportunity that you have provided for me to reflect upon and appreciate something truly significant on Thanksgiving.
In year's past, if you asked me what I was thankful for on Thanksgiving I can pretty much assure you that the list would be short: family, friends, the chance to relax midweek, and the opportunity to eat comfort food in one large meal to the point of discomfort. But as I wrote yesterday, priorities have shifted and so here's a different list trying to be both inclusive and specific of the things that I am thankful for today:
1. My family: Marla, Nolan, and Audrey for being both pillars of strength for me and an inspiration to endure all that I must.
2. My parents and parents-in-law: For stepping back into those care-giver roles for me and my family that perhaps you thought you had absolved yourselves of some time ago. The amount of time and energy you have spent is not lost on me.
3. Friends who have stepped in to fill the day-to-day voids: Particularly the Baileys, Conways, Reeves who have done little, and not-so-little, things to help Marla and I achieve our goal of 'normalcy' for our daily family life.
4. The gifts we have received: We've received a bounty of meals, thinking-of-you gifts, baskets, cards, bags, and boxes. These range from very practical to whimsical. Each that arrives have been valued for what they do to sustain us in the intended way. Thank you to all that have sent gifts and cards.
5. The support network: If you are reading this post consider yourself thanked. It may have been the singular most helpful and important decision I made in the early days of my treatment to start these regular postings. While I receive numerous thanks for maintaining these blogs, I will continue to point out that these are therapeutic for me. I enjoy the opportunity to share my thoughts with those who care to know them and have come to cherish the journal entries and comments.
6. The above-and-beyond support from Westat: For the past five years I went to work with very talented, caring, and fun people. I had no expectation for the amount of support I would receive from an employer under such circumstances. I have been routinely 'blown away' by the magnitude of Westat's outpouring of concern both Corporately and from the individuals that I have been fortunate enough to work with. Several groups bear mentioning for admitting to, or orchestrating what seems to be, efforts of outreach--SPS, HRS, OMRG--Thank you.
7. The serendipity of my diagnosis: I had occasion as recently as yesterday to revisit why I went to the doctor on September 22nd. I still cannot pinpoint what drove me to the decision to seek medical treatment for a seemingly benign set of symptoms.
8. The medical care I have received throughout: Starting with the doctors at the clinic who first hit me with the "lymphoma" diagnosis, my primary care physician who orchestrated the following week to get me to a diagnosis, the specialists who pointpointed Acute Lymphoblastic Lymphoma and devised my treatment routine--thank you for my quick start toward a cure. I would like to thank, specifically, my dedicated care team at Hopkins: Dr. Roisin Connolly, Dr. Richard Ambinder and Nurse Practitioner Audra (sorry, Audra, I don't think I ever learned your last name) who direct my care and who have allowed me to have a role in the decisions made. You are all very impressive and skilled clinicians who have astounded me routinely with your willingness and ability to answer my questions with patience, tact, and a straight-forwardness that I had thought missing from the world of medicine. Finally, the legion of Hopkins nurses who have tended to me as either an out- or in-patient. I'm beginning to know many of the names and have come to value highly the knowledge you bring to my daily care. Thank you for your efforts on my behalf.
9. The medical advice from friends: My support network includes several individuals who have medical backgrounds or extensive family histories with cancer and other illnesses. At times issues in my treatment (my first blood transfusion, the spinal taps come to mind) have been discussed in these blogs. Your input on what I have written sets me at ease and calms me for those parts of the process that have been unsettling. Thank you for your willingness to consider what I write and for your thoughtful advice, input, and encouragement.
10. For my strength, energy, and attitude: It may be redundant a bit to touch on these as much of the first 9 items create or sustain them. However, it is a daily occurrence for me to wake up feeling that I am still the same person I was before my diagnosis. When I look in the mirror I do not see a weakened cancer patient ravaged by severe medicines that carry their own damaging side-effects. Instead (after I cover my bald head), I see a seemingly healthy vision of myself--same weight, good spirits and with the ability to get up and do things.
11. Positive 'vibes' in a tough situation: This actually has its genesis outside of my cancer and is intended to stop short of a political discussion. The U.S. is facing major challenges. I have had extra time to pay attention and hold no illusions that any administration can or will have all the answers. I am thankful, instead, for the degree of optimism and hope that the incoming administration seems to be maintaining. I see parallels between the struggles being faced by the U.S. and my personal health situation. In both areas hope and optimism can carry us beyond the tough early going.
I believe I have set down much of what has occurred to me in my Thanksgiving-thinking this week. If you read this on Thanksgiving, I hope you have a great holiday and that what I've written has given you the inspiration to look beyond what's set on the table or on the television for what you are thankful for. If you read this after the holiday, know that I thank you all for the opportunity that you have provided for me to reflect upon and appreciate something truly significant on Thanksgiving.
Wednesday, November 26, 2008
How Do I Answer Poll Results
A little over a week ago I put up a poll on the Blogger site asking folks to vote on alternative ways for me to answer the casual "How ya' doin'? that so often serves as a greeting and becomes significantly more difficult to answer when faced with a cancer diagnosis.
During that post I admitted to using what had become my standard response for quite some time: "Oh, I'm hanging in there." The impetus for the posting and the poll was to explore if there was some way to better reflect my current status (inflicted with a serious illness but handling it well and in good spirits) without burdening the peapod delivery guy or afternoon telephone solicitor with a dissertation on lumbar punctures and the timelines for resulting headaches (maybe that would work with the solicitors, come to think of it).
To be honest, I kind of rushed through the choices I included in the poll and perhaps they were a little uninspired. For those who did not see the poll, the options for me to use for answering the "How are you" question were: "I'm Unremarkable", "You wouldn't believe me if I told you", "Good . . . considering", and just sticking with "I'm hanging in there.
I received 21 votes. My three new options each received 4 votes. That leaves 9 votes and a clear mandate from my support network (assuming you believe that 21 votes from what has become a small army of a support network constitutes a mandate) that I should keep my old response.
I have to say I was a bit surprised at first. But, I've got time to think and digest and I suppose Marie's sentiment posted on the blogger site sums it up--the old response just sounds like me. Much has changed for me over the past couple of months. Priorities have shifted and habits and daily activities have come and gone. What hasn't really changed is what most people seem to associate with me: my attitude, my "voice", my outlook.
I've written several times that I have been given no reason to change my attitude or my outlook. With this in mind, it seems that perhaps the wisdom of the masses overrules the patient. Maybe, it isn't the words that I choose in order to respond to a casual question that never really sought an in-depth answer that is important. Perhaps, instead, the critical evaluation is the amount of thought going into the "How are you?" If the question comes as I'm being handed 8 bags of groceries at the front door I can see how this would be quite different from receving a call from family or friends who are calling to check on me--the detail of the response should reflect the thoughtfulness with which the question is being asked. My only concern is my ability to read the intent of the question. Please consider this an open invitation to press me further if I stop with "I'm hanging in there."
Thank you, support network, for your insight. I've said all along that these blogs help me as much as they serve you.
During that post I admitted to using what had become my standard response for quite some time: "Oh, I'm hanging in there." The impetus for the posting and the poll was to explore if there was some way to better reflect my current status (inflicted with a serious illness but handling it well and in good spirits) without burdening the peapod delivery guy or afternoon telephone solicitor with a dissertation on lumbar punctures and the timelines for resulting headaches (maybe that would work with the solicitors, come to think of it).
To be honest, I kind of rushed through the choices I included in the poll and perhaps they were a little uninspired. For those who did not see the poll, the options for me to use for answering the "How are you" question were: "I'm Unremarkable", "You wouldn't believe me if I told you", "Good . . . considering", and just sticking with "I'm hanging in there.
I received 21 votes. My three new options each received 4 votes. That leaves 9 votes and a clear mandate from my support network (assuming you believe that 21 votes from what has become a small army of a support network constitutes a mandate) that I should keep my old response.
I have to say I was a bit surprised at first. But, I've got time to think and digest and I suppose Marie's sentiment posted on the blogger site sums it up--the old response just sounds like me. Much has changed for me over the past couple of months. Priorities have shifted and habits and daily activities have come and gone. What hasn't really changed is what most people seem to associate with me: my attitude, my "voice", my outlook.
I've written several times that I have been given no reason to change my attitude or my outlook. With this in mind, it seems that perhaps the wisdom of the masses overrules the patient. Maybe, it isn't the words that I choose in order to respond to a casual question that never really sought an in-depth answer that is important. Perhaps, instead, the critical evaluation is the amount of thought going into the "How are you?" If the question comes as I'm being handed 8 bags of groceries at the front door I can see how this would be quite different from receving a call from family or friends who are calling to check on me--the detail of the response should reflect the thoughtfulness with which the question is being asked. My only concern is my ability to read the intent of the question. Please consider this an open invitation to press me further if I stop with "I'm hanging in there."
Thank you, support network, for your insight. I've said all along that these blogs help me as much as they serve you.
Tuesday, November 25, 2008
A Check-in with Remission Control
In the first few days after my diagnosis I relayed my news to a college friend who I knew to have several personal experiences with cancer in his family. One bit of advice that he had came from his mother's long battle--Some time has passed so I'll paraphrase a bit: "Doctor's are human too, do your own research and don't be afraid to make suggestions based on what you learn".
For those who have followed the blog from early on, or who have read back enough to have caught my "Remission Control" post on October 22 may recall my struggle with what little I control in the recovery process. At that time I concluded there was little within my control than to make myself available for treatment and another category of behaviors that I had labeled 'attitude' into which I was able to find a bit more to do that is helpful.
My friend's advice, which springs from watching his mother's long struggle with cancer, has served as a foundation for my actions as patient that I have put into the category of 'attitude'. It is actually better described as staying informed and it has recently borne fruit in several comforting and helpful ways that I thought I might share. My angle in using this advice has been to do what I can to help my busy care team keep on top of my complex treatment protocol and to better understand what they need to know from me so that I am prepared to give a full status report when asked.
Early on I had spent a fair amount of time learning about the Hyper CVAD treatment protocol and I have included a link to a very, very helpful article on both versions of my blog for anyone who would like to learn more about what I'm going through at any time. This research has enabled me to ask pertinent questions like: "I see this list of medications does not include the Steroids that were a very important part of round A1. Shouldn't I be getting them here in A2?" Whether I am right or not isn't as important as my becoming a consultative part of the treatment team.
Last night as those same steroids interfered with sleep a bit I drummed up an analogy where I'm part of a team of Tree Surgeons in charge of the health of a forest full of trees. While the real experts are trained to treat all manner of tree-issues across a wide variety of trees I might be likened to a Jr. Tree Surgeon assigned to know a single tree (me) with a single issue. While I might not have the breadth of training or the clinical insight of the oncology doctors and nurses, I do have a whole lot of experience with this single tree's health and well being. That experience coupled with a burgeoning knowledge of my single issue certainly has value that should be brought to bear on my overall treatment.
It probably doesn't surprise many of you who have worked or studied with me to know that I've become very data-driven in this process. I have been keeping track of my blood counts as I move through treatment phases. I can't recall if this was suggested to me from somewhere or if I just started doing it on my own. In any event it came in handy this week as I attempted to figure out what my plan might be for Thanksgiving. Could I see the extended family coming down from Pennsylvania or will I still be bottomed-out on white blood cells and at severe risk of infection?
Yesterday's test on day 13 of treatment revealed that my counts were still dipping a bit and seemed to point to my having to remain home from Thanksgiving festivities. However, my treatment team seemed to think that the counts should return by the day after Thanksgiving and changed the plan for my outpatient treatments to skip today and tomorrow's visit in favor of a visit on Friday where my counts should be up and planning for round four (or B2) can begin. Yesterday, I discussed my handling of Thanksgiving with my treatment team and mentioned that I would like to factor in any trends I might have noticed on blood counts thus far. I was met with enthusiasm and encouragement.
I went back to the numbers that I've faithfully been keeping and was able to identify a trend. Using the hospital admission date as day #1 of a new treatment round I was able to determine that the white blood cells hit bottom by day #12 and in the first two rounds returned to normal ranges by day #15. I'm happy to announce that day #15 is tomorrow and that I feel that there is good reason to believe that I should be in the normal range of WBC's in time for Thanksgiving!
So, while I'm not curing my own cancer or revising my treatment plan I do feel that my efforts to become an informed and good patient are helping if only to assist my treatment team and to bolster the positive feelings that have buoyed me through the process thus far.
For those who have followed the blog from early on, or who have read back enough to have caught my "Remission Control" post on October 22 may recall my struggle with what little I control in the recovery process. At that time I concluded there was little within my control than to make myself available for treatment and another category of behaviors that I had labeled 'attitude' into which I was able to find a bit more to do that is helpful.
My friend's advice, which springs from watching his mother's long struggle with cancer, has served as a foundation for my actions as patient that I have put into the category of 'attitude'. It is actually better described as staying informed and it has recently borne fruit in several comforting and helpful ways that I thought I might share. My angle in using this advice has been to do what I can to help my busy care team keep on top of my complex treatment protocol and to better understand what they need to know from me so that I am prepared to give a full status report when asked.
Early on I had spent a fair amount of time learning about the Hyper CVAD treatment protocol and I have included a link to a very, very helpful article on both versions of my blog for anyone who would like to learn more about what I'm going through at any time. This research has enabled me to ask pertinent questions like: "I see this list of medications does not include the Steroids that were a very important part of round A1. Shouldn't I be getting them here in A2?" Whether I am right or not isn't as important as my becoming a consultative part of the treatment team.
Last night as those same steroids interfered with sleep a bit I drummed up an analogy where I'm part of a team of Tree Surgeons in charge of the health of a forest full of trees. While the real experts are trained to treat all manner of tree-issues across a wide variety of trees I might be likened to a Jr. Tree Surgeon assigned to know a single tree (me) with a single issue. While I might not have the breadth of training or the clinical insight of the oncology doctors and nurses, I do have a whole lot of experience with this single tree's health and well being. That experience coupled with a burgeoning knowledge of my single issue certainly has value that should be brought to bear on my overall treatment.
It probably doesn't surprise many of you who have worked or studied with me to know that I've become very data-driven in this process. I have been keeping track of my blood counts as I move through treatment phases. I can't recall if this was suggested to me from somewhere or if I just started doing it on my own. In any event it came in handy this week as I attempted to figure out what my plan might be for Thanksgiving. Could I see the extended family coming down from Pennsylvania or will I still be bottomed-out on white blood cells and at severe risk of infection?
Yesterday's test on day 13 of treatment revealed that my counts were still dipping a bit and seemed to point to my having to remain home from Thanksgiving festivities. However, my treatment team seemed to think that the counts should return by the day after Thanksgiving and changed the plan for my outpatient treatments to skip today and tomorrow's visit in favor of a visit on Friday where my counts should be up and planning for round four (or B2) can begin. Yesterday, I discussed my handling of Thanksgiving with my treatment team and mentioned that I would like to factor in any trends I might have noticed on blood counts thus far. I was met with enthusiasm and encouragement.
I went back to the numbers that I've faithfully been keeping and was able to identify a trend. Using the hospital admission date as day #1 of a new treatment round I was able to determine that the white blood cells hit bottom by day #12 and in the first two rounds returned to normal ranges by day #15. I'm happy to announce that day #15 is tomorrow and that I feel that there is good reason to believe that I should be in the normal range of WBC's in time for Thanksgiving!
So, while I'm not curing my own cancer or revising my treatment plan I do feel that my efforts to become an informed and good patient are helping if only to assist my treatment team and to bolster the positive feelings that have buoyed me through the process thus far.
Monday, November 24, 2008
Update
Good Morning All:
Heading out to Hopkins this AM. They are really moving quickly on the A-cycle part of my regimen. Since I tolerate it well I get the sense that they are interested in monitoring me closely and moving into the B-cycle when possible. This, of course, will shorten my overall treatment which I am astounded about and makes some of the goals I set for myself (e.g., coaching my son's little leage team this spring) more probable.
I was at Hopkins yesterday, my first Sunday outpatient visit, to receive a scheduled chemo treatment--the last of round 3, sort of a straggler on day 11. I am also scheduled for daily outpatient visits Monday through Wednesday this week. Unfortunately this means that I and some of those who have taken on the duty of driving me to Hopkins will be bearing a load--much thanks to those who shoulder this for me.
I learned yesterday that I am once again devoid (or virtually so) of white blood cells. They indicated that they wanted to monitor me daily as a result. The team was different on a Sunday and this marks a slight change from the every-other-day protocol that I had been on. We'll see if anything changes when we get there today. I suspect that the inclusion of Thanksgiving in this week is at least part of the rationale. I can get behind this because if my blood counts don't recover by Thursday I might have to miss out on seeing many extended family members that I have not seen since I was diagnosed.
Many thanks to those who expressed condolences over Bungo last week. It was an ill-timed shock but I think we've recovered as we head into this new week.
--Russ.
Heading out to Hopkins this AM. They are really moving quickly on the A-cycle part of my regimen. Since I tolerate it well I get the sense that they are interested in monitoring me closely and moving into the B-cycle when possible. This, of course, will shorten my overall treatment which I am astounded about and makes some of the goals I set for myself (e.g., coaching my son's little leage team this spring) more probable.
I was at Hopkins yesterday, my first Sunday outpatient visit, to receive a scheduled chemo treatment--the last of round 3, sort of a straggler on day 11. I am also scheduled for daily outpatient visits Monday through Wednesday this week. Unfortunately this means that I and some of those who have taken on the duty of driving me to Hopkins will be bearing a load--much thanks to those who shoulder this for me.
I learned yesterday that I am once again devoid (or virtually so) of white blood cells. They indicated that they wanted to monitor me daily as a result. The team was different on a Sunday and this marks a slight change from the every-other-day protocol that I had been on. We'll see if anything changes when we get there today. I suspect that the inclusion of Thanksgiving in this week is at least part of the rationale. I can get behind this because if my blood counts don't recover by Thursday I might have to miss out on seeing many extended family members that I have not seen since I was diagnosed.
Many thanks to those who expressed condolences over Bungo last week. It was an ill-timed shock but I think we've recovered as we head into this new week.
--Russ.
Friday, November 21, 2008
Update
Good Morning all:
A little late in getting to my post. We're in a little bit of dissarray as Marla has come down with some sort of cold/illness which means I'm required to run screaming in the opposite direction leaving behind a cloud of Lysol in my wake when she comes into view. This, of course, makes getting the kids ready for school a particular challenge.
To top it off I'm getting the LP (lumbar puncture, the kinder-gentler name for spinal tap) headaches again--this is day 2 and I'm not sure how much longer I'll be upright. The caffeine is brewed--we'll see how it all plays out.
--Russ.
A little late in getting to my post. We're in a little bit of dissarray as Marla has come down with some sort of cold/illness which means I'm required to run screaming in the opposite direction leaving behind a cloud of Lysol in my wake when she comes into view. This, of course, makes getting the kids ready for school a particular challenge.
To top it off I'm getting the LP (lumbar puncture, the kinder-gentler name for spinal tap) headaches again--this is day 2 and I'm not sure how much longer I'll be upright. The caffeine is brewed--we'll see how it all plays out.
--Russ.
Thursday, November 20, 2008
Saying goodbye to a critical care team member
My support team lost a critical member overnight. He wasn't a cheerleader, wasn't terribly energetic and couldn't do much in the way of helping me through treatments and the like but he was there probably more than most anyone and he'll be missed terribly. Our dog, Bungo, died last night after being (of all things) gored by a deer in our backyard.
We were cleaning up after dinner when two very, sharp and pained yelps came from the backyard. Marla went outside to look as a large, young-looking and antlered buck paraded across our backyard. Bungo had taken refuge under our porch. Marla called to Bungo and he came out limping and not moving very well. The light from her flashlight revealed a gouge on his shoulder and we thought that maybe he had received that cut and perhaps a kick to explain the limp, in a confrontation with the animal.
We put Bungo into his doggie bed and I drove him to the Animal Hospital where I learned that the gouge on his shoulder was not the most serious of his wounds. He had also been gored in the abdomen. The vets said Bungo was in shock and worked to stablize him so that they could perform exploratory surgery to see the true extent of the damage. Around 11:00 we learned that Bungo's vital organs had not been hit, it seemed he would recover, and we went to bed perhaps a little worried about the recovery process for a dog his age with this sort of trauma. We got another call around 3:00 informing us that Bungo never came out of the shock and anesthesia from the surgery and that he had passed away. Bungo was 13 and was starting took look and act his age. When I learned of the wound to his abdomen I wondered if or how his little beagle-body could take such punishment. I suppose it couldn't.
Bungo was a master of lying around the house, in tune most with the comings and goings of sunbeams through windows and where to find crumbs of food on the floor. But he brought so much to my recovery by simply being my daily companion as I recuperated at home. Most of the time his reward was a pat on the head or a scratch under the chin and I have to assume that was enough for him. No matter where I went in the house he was there too. Following my trips to Hopkins he was always there at the front door (albeit laying in his doggy bed, not prancing around like he was 3 again) waiting for me to return. He was simply determined to be there for me--and he was, in a way and to a degree that is not possible for people with lives and families to achieve. It sounds somewhat melodramatic to write and read but there it is.
Clearly, our family is sad as a result. Bungo was my wedding present to Marla and he's been there for everything. This includes our recent battle with cancer. While I have stressed that my family continue to do the things that normal wives, sons, daughters do in order to maintain some sembalance of normalcy, Bungo did just the same. His job was to keep me company and he did just that while overcoming stiff legs and failing eyesight to navigate our split-level house--all in a simple effort to be where I was. How can anyone replace such a loyal and devoted companion?
We were cleaning up after dinner when two very, sharp and pained yelps came from the backyard. Marla went outside to look as a large, young-looking and antlered buck paraded across our backyard. Bungo had taken refuge under our porch. Marla called to Bungo and he came out limping and not moving very well. The light from her flashlight revealed a gouge on his shoulder and we thought that maybe he had received that cut and perhaps a kick to explain the limp, in a confrontation with the animal.
We put Bungo into his doggie bed and I drove him to the Animal Hospital where I learned that the gouge on his shoulder was not the most serious of his wounds. He had also been gored in the abdomen. The vets said Bungo was in shock and worked to stablize him so that they could perform exploratory surgery to see the true extent of the damage. Around 11:00 we learned that Bungo's vital organs had not been hit, it seemed he would recover, and we went to bed perhaps a little worried about the recovery process for a dog his age with this sort of trauma. We got another call around 3:00 informing us that Bungo never came out of the shock and anesthesia from the surgery and that he had passed away. Bungo was 13 and was starting took look and act his age. When I learned of the wound to his abdomen I wondered if or how his little beagle-body could take such punishment. I suppose it couldn't.
Bungo was a master of lying around the house, in tune most with the comings and goings of sunbeams through windows and where to find crumbs of food on the floor. But he brought so much to my recovery by simply being my daily companion as I recuperated at home. Most of the time his reward was a pat on the head or a scratch under the chin and I have to assume that was enough for him. No matter where I went in the house he was there too. Following my trips to Hopkins he was always there at the front door (albeit laying in his doggy bed, not prancing around like he was 3 again) waiting for me to return. He was simply determined to be there for me--and he was, in a way and to a degree that is not possible for people with lives and families to achieve. It sounds somewhat melodramatic to write and read but there it is.
Clearly, our family is sad as a result. Bungo was my wedding present to Marla and he's been there for everything. This includes our recent battle with cancer. While I have stressed that my family continue to do the things that normal wives, sons, daughters do in order to maintain some sembalance of normalcy, Bungo did just the same. His job was to keep me company and he did just that while overcoming stiff legs and failing eyesight to navigate our split-level house--all in a simple effort to be where I was. How can anyone replace such a loyal and devoted companion?
Wednesday, November 19, 2008
Milestone Update!
Good afternoon All!
Just wanted to share a bit of cheer with everyone who is checking in on me. As you all know, one of the most daunting parts of my treatment plan has proven to be the 12 spinal taps that I was slated to endure. My plan calls for 2 taps each of the 8 rounds of treatment with the exception of rounds 7 and 8. So far the fluid claimed during these taps indicate that cancer has NOT invaded my Central Nervous System and so the chemo treatments I receive at these times are preventative in nature.
This morning I received spinal tap number 6 (#7 if you count the earlier failed one). It was a peice of cake and I am now smiling at the downslope of the "spinal-taps-to-go" tally. I'm not yet half way through with anything else but as this was a source of pain and frustration in the early going it is nice to know that I've made it halfway through--PARTY!
--Russ.
Just wanted to share a bit of cheer with everyone who is checking in on me. As you all know, one of the most daunting parts of my treatment plan has proven to be the 12 spinal taps that I was slated to endure. My plan calls for 2 taps each of the 8 rounds of treatment with the exception of rounds 7 and 8. So far the fluid claimed during these taps indicate that cancer has NOT invaded my Central Nervous System and so the chemo treatments I receive at these times are preventative in nature.
This morning I received spinal tap number 6 (#7 if you count the earlier failed one). It was a peice of cake and I am now smiling at the downslope of the "spinal-taps-to-go" tally. I'm not yet half way through with anything else but as this was a source of pain and frustration in the early going it is nice to know that I've made it halfway through--PARTY!
--Russ.
Monday, November 17, 2008
How am I doing? How do I answer?
When I was first diagnosed with cancer (and before many folks knew anything about it) I encountered a very difficult dilemma. Co-workers, family, friends would ask "How are you?" as a casual greeting. How could I answer? The person asking typically had no clue of my diagnosis so I could not see assailing them with all the negativity of the situation. But was putting on a happy face misleading or unfair?
My initial, and current strategy, is to use my standard answer: "I'm hanging in there". That had been my eeyore-esque attempt at humor prior to my diagnosis and it seemed appropo to offer it up immediately after my diagnosis and before many knew--almost my own inside joke. This all seems to be a very unfortunate bit of analysis to heap on a reflex answer to a question asked out of no real regard for my well being, but the question being asked of me carries much more weight and bears more scrutiny than it ever has before.
At this point, however, my old reflex answer doesn't serve me well. Whether I'm being asked as an informal greeting or someone who knows of my situation is interested in how I'm doing I think I need to do better than "I'm hanging in there." I need a response that can reflect the positive outcomes thus far but still carry the weight of the circumstance. It might be nice, too, if it would fly well over the head of the unsuspecting grocery clerk or waitress who just happens to ask "How you doin'?"
I've got some ideas. Maybe I'll post a poll on the blogger site (another reason to visit that site if you haven't already). In any event please continue to ask how I'm doing. If you are in the know you might get a dissertation on blood counts and treatment regimen that only Russ can provide. It might be, instead, that I try out one of my new 'pat' responses to see how it fits.
In any event, keep asking. I am not uncomfortable sharing how things are going and am gratified every day with the numbers of people who check in and express concern. I have said often that it is one of the highlights of my day to check the blog sites and to post to them.
My initial, and current strategy, is to use my standard answer: "I'm hanging in there". That had been my eeyore-esque attempt at humor prior to my diagnosis and it seemed appropo to offer it up immediately after my diagnosis and before many knew--almost my own inside joke. This all seems to be a very unfortunate bit of analysis to heap on a reflex answer to a question asked out of no real regard for my well being, but the question being asked of me carries much more weight and bears more scrutiny than it ever has before.
At this point, however, my old reflex answer doesn't serve me well. Whether I'm being asked as an informal greeting or someone who knows of my situation is interested in how I'm doing I think I need to do better than "I'm hanging in there." I need a response that can reflect the positive outcomes thus far but still carry the weight of the circumstance. It might be nice, too, if it would fly well over the head of the unsuspecting grocery clerk or waitress who just happens to ask "How you doin'?"
I've got some ideas. Maybe I'll post a poll on the blogger site (another reason to visit that site if you haven't already). In any event please continue to ask how I'm doing. If you are in the know you might get a dissertation on blood counts and treatment regimen that only Russ can provide. It might be, instead, that I try out one of my new 'pat' responses to see how it fits.
In any event, keep asking. I am not uncomfortable sharing how things are going and am gratified every day with the numbers of people who check in and express concern. I have said often that it is one of the highlights of my day to check the blog sites and to post to them.
Sunday, November 16, 2008
Update
Good Morning All:
Not much to report today but I am happy to announce that I'll be going home tomorrow. After getting a couple of doses of chemo today I'll travel home and finish the last bit of the therapy for this round as an outpatient. Very welcome news.
--Russ.
Not much to report today but I am happy to announce that I'll be going home tomorrow. After getting a couple of doses of chemo today I'll travel home and finish the last bit of the therapy for this round as an outpatient. Very welcome news.
--Russ.
Saturday, November 15, 2008
When questions come to mind . . .
Good morning!
Slept pretty well last night. I'm on a different floor this time around and the 'rules' are a little different. On the 5th floor it was pretty much routine to be woken up every other hour or so to take blood pressure, temperature, and heart rate. On THIS floor they take vital signs at 11:00 pm (called the midnight check, mind you) and 6:00 am leaving a luxiourious 7 hours to sleep as I am able! I started dosing off at 9:30 last night so I'm feeling pretty refreshed this morning.
I did have spinal tap number five yesterday. Again, this one was under an x-ray machine (flouroscopy) to aid the precise placement of the needle. If they can all go the way yesterday's went then the remaining 7 spinal taps will be a peice-o-cake. They took a fresh sample of my spinal fluid to be certain that the cancer is still not in my central nervous system (another, continuing good sign). They also injected a chemo therapy drug, Methotrexate I believe, into my spine as a preventative measure.
I got a surprise visit from the physician at Hopkins who is taking the lead on my case. I thought she was still on vacation--she's from Ireland and was visiting family. Instead, yesterday was her first day back and she stopped by when she learned I was in. Dr. Connolly is a refreshing change to my prior experiences with doctors. She will sit and talk, she answers all questions in a direct fashion and without relying on jargon to do so. She doesn't back away from questions that ask for her opinion or to 'make a prognosis'.
Yesterday, I told her about the CT Scan showing shrinking lymph nodes from my fever-based admission while she was in Ireland. She had heard of the results but hadn't actually seen the scans yet. That's when a question occurred to me: "Of course this is encouraging, but the scary part is what is happening in my bone marrow. Is there something to infer or a prediction to be made on what is happening in the marrow based on these early results?" I asked.
Dr. Connolly replied that while it would certainly take another bone marrow biopsy (joy!) to be certain of anything, the shrinking lymph nodes would, in most cases, point toward either status quo or even probably some early success in the bone marrow. She added that it would be extremely unlikely that the treatments would have an effect on the lymph nodes and that somehow cancer in the bone marrow would flourish.
I continue to be encouraged and it looks like I'll be returning home Monday or Tuesday next week to await the RBC count plunge!
Slept pretty well last night. I'm on a different floor this time around and the 'rules' are a little different. On the 5th floor it was pretty much routine to be woken up every other hour or so to take blood pressure, temperature, and heart rate. On THIS floor they take vital signs at 11:00 pm (called the midnight check, mind you) and 6:00 am leaving a luxiourious 7 hours to sleep as I am able! I started dosing off at 9:30 last night so I'm feeling pretty refreshed this morning.
I did have spinal tap number five yesterday. Again, this one was under an x-ray machine (flouroscopy) to aid the precise placement of the needle. If they can all go the way yesterday's went then the remaining 7 spinal taps will be a peice-o-cake. They took a fresh sample of my spinal fluid to be certain that the cancer is still not in my central nervous system (another, continuing good sign). They also injected a chemo therapy drug, Methotrexate I believe, into my spine as a preventative measure.
I got a surprise visit from the physician at Hopkins who is taking the lead on my case. I thought she was still on vacation--she's from Ireland and was visiting family. Instead, yesterday was her first day back and she stopped by when she learned I was in. Dr. Connolly is a refreshing change to my prior experiences with doctors. She will sit and talk, she answers all questions in a direct fashion and without relying on jargon to do so. She doesn't back away from questions that ask for her opinion or to 'make a prognosis'.
Yesterday, I told her about the CT Scan showing shrinking lymph nodes from my fever-based admission while she was in Ireland. She had heard of the results but hadn't actually seen the scans yet. That's when a question occurred to me: "Of course this is encouraging, but the scary part is what is happening in my bone marrow. Is there something to infer or a prediction to be made on what is happening in the marrow based on these early results?" I asked.
Dr. Connolly replied that while it would certainly take another bone marrow biopsy (joy!) to be certain of anything, the shrinking lymph nodes would, in most cases, point toward either status quo or even probably some early success in the bone marrow. She added that it would be extremely unlikely that the treatments would have an effect on the lymph nodes and that somehow cancer in the bone marrow would flourish.
I continue to be encouraged and it looks like I'll be returning home Monday or Tuesday next week to await the RBC count plunge!
Friday, November 14, 2008
Update
Good Morning All:
I got a bed yesterday and round three has begun. This round typically lasts longer than the last one but I tolerated it very, very well the first time around so I'm hoping for the same.
I'm slated for another spinal tap today so I'm loading up on caffeine with the hopes that between the stimulant and forcing myself to lie flat for a couple of hours following the procedure I might escape the headaches that I'm still dealing with from the last 'lumbar puncture'.
So, for those keeping score I believe I am now two days ahead of schedule!
--Russ.
I got a bed yesterday and round three has begun. This round typically lasts longer than the last one but I tolerated it very, very well the first time around so I'm hoping for the same.
I'm slated for another spinal tap today so I'm loading up on caffeine with the hopes that between the stimulant and forcing myself to lie flat for a couple of hours following the procedure I might escape the headaches that I'm still dealing with from the last 'lumbar puncture'.
So, for those keeping score I believe I am now two days ahead of schedule!
--Russ.
Thursday, November 13, 2008
Cancer Treatment's a lifestyle change, don'cha think?
Those who have worked with me and taken a call from me before 9:00 am have certainly heard me say it: "I do my best thinking in the shower."
Under normal circumstances I would stumble into the shower each morning to get ready for work and the warm water would get the wheels turning. I'd think about whatever was on my mind the day before. After a night "to sleep on it" it was amazing the ideas (some of them a bit out in left field) that would come to me in the shower. My showers didn't take 2 hours or anything like that, but there were times where I realized that I had gotten so completely caught up in my thinking that I simply let the water run over me for several minutes. I'd stand there with no real accompanying effort to actually get clean, all while I fleshed out the details of a tweak to a compensation system or thought through how I might present a new idea to a team.
Now I have to be careful when I shower. I didn't mourn it publicly, but Marla has already heard me lament that my showers are simply not the same anymore. The catheter that springs from my chest and the dressing that covers it cannot get soaked. I took the advice of a nurse when I first got the Hickman and use plastic wrap to keep it covered with little fuss-or-muss. But this quick solution won't allow me to stand in the stream of warm water and simply let the water wash over me. Instead I have to make judicious and precise use of the hand-held nozzle in order to carefully soap up and rinse off. My new showering ritual has no room for the mind-wandering, problem-solving excursions of several months ago and has shortened to really just a few minutes. In fact, it probably takes me longer to get the temperature right and apply the plastic wrap than it does to actually get clean.
This morning it occurred to me that this is yet another temporary casualty of my cancer treatments. And it isn't the luxuriousness of lingering in a nice warm shower that I'm writing about--though I certainly miss that. It's the chance to quietly solve all the world's problems (or at least the one that bugs me most) and to emerge with some new idea to act upon or an angle to try when I report to work. That nice burst of inspiration brought excitement and energy to start the day--something that would color and shape my early morning activities.
It appears that I may be in line to be admitted today. Here's to the start of round 3 of my treatment and the speeding of my schedule by a day or two. And here's to identifying yet another reason to endure the treatments and be excited for my progress--now if I only had hair to wash . . .
Under normal circumstances I would stumble into the shower each morning to get ready for work and the warm water would get the wheels turning. I'd think about whatever was on my mind the day before. After a night "to sleep on it" it was amazing the ideas (some of them a bit out in left field) that would come to me in the shower. My showers didn't take 2 hours or anything like that, but there were times where I realized that I had gotten so completely caught up in my thinking that I simply let the water run over me for several minutes. I'd stand there with no real accompanying effort to actually get clean, all while I fleshed out the details of a tweak to a compensation system or thought through how I might present a new idea to a team.
Now I have to be careful when I shower. I didn't mourn it publicly, but Marla has already heard me lament that my showers are simply not the same anymore. The catheter that springs from my chest and the dressing that covers it cannot get soaked. I took the advice of a nurse when I first got the Hickman and use plastic wrap to keep it covered with little fuss-or-muss. But this quick solution won't allow me to stand in the stream of warm water and simply let the water wash over me. Instead I have to make judicious and precise use of the hand-held nozzle in order to carefully soap up and rinse off. My new showering ritual has no room for the mind-wandering, problem-solving excursions of several months ago and has shortened to really just a few minutes. In fact, it probably takes me longer to get the temperature right and apply the plastic wrap than it does to actually get clean.
This morning it occurred to me that this is yet another temporary casualty of my cancer treatments. And it isn't the luxuriousness of lingering in a nice warm shower that I'm writing about--though I certainly miss that. It's the chance to quietly solve all the world's problems (or at least the one that bugs me most) and to emerge with some new idea to act upon or an angle to try when I report to work. That nice burst of inspiration brought excitement and energy to start the day--something that would color and shape my early morning activities.
It appears that I may be in line to be admitted today. Here's to the start of round 3 of my treatment and the speeding of my schedule by a day or two. And here's to identifying yet another reason to endure the treatments and be excited for my progress--now if I only had hair to wash . . .
Wednesday, November 12, 2008
Update
Looks like I'm in a holding pattern. I'm on the list to be admitted but I learned yesterday that there is a bit of a backlog for beds at Hopkins right now. As of last night they were still working on what were supposed to be Monday admissions. So, even though my body and the doctors were willing to move ahead into round three a few days early there isn't a bed to make this possible.
My understanding is that I will get update calls each morning and evening until a bed opens up. My bags are pretty well packed and when I get the call I'll certainly post the news!
--Russ.
My understanding is that I will get update calls each morning and evening until a bed opens up. My bags are pretty well packed and when I get the call I'll certainly post the news!
--Russ.
Monday, November 10, 2008
The storm before the calm
Its Monday and its a couple of days before I get admitted to Hopkins again to begin round 3 of chemotherapy. There is so much to do and seemingly so little time to in which to do it.
Before I go too far down the path of sharing the nitty-gritty of what I feel I need to do and open myself up to the howls of "You shouldn't be worrying about those things!" and "Ask for help!" I think I might shift gears just a bit and explain why there is a storm before the mind-numbing hospital stays and why it isn't as easy as just letting someone else do it.
This all hearkens back to many of the same sentiments I've expressed before. My goal in all of this is to get better. If I had to pick the path that I take to reaching that goal it would be the one that causes the fewest 'problems'--problems for me, problems for family, friends, coworkers. And I define problems pretty liberally. Marla having to figure out how to be a single parent for a short time AND have to pay the bills is a problem since I can (and will) pay the bills before I go. Similarly, there are things that I simply cannot do at work since I'm not there every day but there are burdens that don't HAVE to be shifted to those who are already picking up my slack.
I have the energy and the ability to alleviate or mitigate these 'problems' today and tomorrow. Doing so allows me to feel useful and to enter the hospital with only my treatment and recovery on my mind. If I can believe what I hear about my treatment regimen, there will be a time where these activities shift from a workable set of activities to a matter of over-extending myself. At such a point I may well agree that 'I shouldn't be worrying about these things' and will turn around and ask for help. My only concern is that I won't be able or willing to recognize when that time comes. I'm pretty certain, however, that it isn't now . . .
Before I go too far down the path of sharing the nitty-gritty of what I feel I need to do and open myself up to the howls of "You shouldn't be worrying about those things!" and "Ask for help!" I think I might shift gears just a bit and explain why there is a storm before the mind-numbing hospital stays and why it isn't as easy as just letting someone else do it.
This all hearkens back to many of the same sentiments I've expressed before. My goal in all of this is to get better. If I had to pick the path that I take to reaching that goal it would be the one that causes the fewest 'problems'--problems for me, problems for family, friends, coworkers. And I define problems pretty liberally. Marla having to figure out how to be a single parent for a short time AND have to pay the bills is a problem since I can (and will) pay the bills before I go. Similarly, there are things that I simply cannot do at work since I'm not there every day but there are burdens that don't HAVE to be shifted to those who are already picking up my slack.
I have the energy and the ability to alleviate or mitigate these 'problems' today and tomorrow. Doing so allows me to feel useful and to enter the hospital with only my treatment and recovery on my mind. If I can believe what I hear about my treatment regimen, there will be a time where these activities shift from a workable set of activities to a matter of over-extending myself. At such a point I may well agree that 'I shouldn't be worrying about these things' and will turn around and ask for help. My only concern is that I won't be able or willing to recognize when that time comes. I'm pretty certain, however, that it isn't now . . .
Friday, November 7, 2008
Update from Hopkins
Just an outpatient follow up today. The counts continue to climb and it looks like I'll be able to start my next round of chemo a day or two early. I pretty much had a headache from about Wednesday evening until this morning. They are currently pumping me full of caffeine (did you know that there is actually an IV drip of caffeine all you coffee drinkers?!) and it seems to be doing the trick. For a time we were unsure of the cause, but it seems to be residual effects from Monday's spinal tap. So now I know that I need to load up on caffeine before and after future spinal taps to avoid this . . .
Thanks to all who continue to check in.
--Russ.
Thanks to all who continue to check in.
--Russ.
Thursday, November 6, 2008
Worth the price of admission
I apologize if this post is devoid of humor or good cheer. I am blogging through a terrific headache. There is quite a bit of good news to share and so I want to fight through it to get all this out there.
First, I just learned that I'm going home today--very good news. They were unable to grow a culture from any samples that they took. This leads them to conclude that I had no infection of any sort and that my fever must have had more innocent roots.
But the big news I actually received after I typed yesterday's post. One of the medical tests they performed on my first evening in the hospital was a CT Scan of my sinuses and chest. I asked the doctor when he informed me of the need for thistest if I could get any updates regarding the mass in my chest from this CT Scan. He said that he would be able to see those lymph nodes but said that given how early I am in my treatment regimen that any noticeable difference would not be likely.
Yesterday at rounds I was told that, indeed, there is a noticeable decreasing of the mass in the lymph nodes in my chest well before doctors would routinely see such an effect with this treatment. This, of course, does not account at all for another mass not viewable in the scan or the cancerous cells in my bone marrow but it is a first indication of the efficacy of the treatments I'm receiving. Excellent and encouraging news.
First, I just learned that I'm going home today--very good news. They were unable to grow a culture from any samples that they took. This leads them to conclude that I had no infection of any sort and that my fever must have had more innocent roots.
But the big news I actually received after I typed yesterday's post. One of the medical tests they performed on my first evening in the hospital was a CT Scan of my sinuses and chest. I asked the doctor when he informed me of the need for thistest if I could get any updates regarding the mass in my chest from this CT Scan. He said that he would be able to see those lymph nodes but said that given how early I am in my treatment regimen that any noticeable difference would not be likely.
Yesterday at rounds I was told that, indeed, there is a noticeable decreasing of the mass in the lymph nodes in my chest well before doctors would routinely see such an effect with this treatment. This, of course, does not account at all for another mass not viewable in the scan or the cancerous cells in my bone marrow but it is a first indication of the efficacy of the treatments I'm receiving. Excellent and encouraging news.
Wednesday, November 5, 2008
Neutrapenic fever
Surprise everyone!
As I sat at my computer yesterday morning I was shivering away. There is a draft at that spot in my house so I didn't think much of it. But when I went upstairs to make lunch and was still shivering I thought I might need to take my temperature. It was up but not beyond the critical temperature of 100.4 degrees. I took a nap after a quick lunch and again took my temperature and it was around 101.
I called the number I've been given and was told to come in. Soon thereafter I learned that I would be admitted and, once here, I've learned that I will be here until the WBCs increase. I learned this morning that they are on the rise but that I'm not out of the danger zone. They took a lot of blood and other samples overnight and so far have not learned of any source of infection. They haven't even duplicated the temperature I took at home.
I've been told that infections are practically impossible to avoid while I have no ability to fight them off. That doesn't mean that I wasn't hoping to dodge this process. But, while I am here I am getting more information about my progress through the B1 phase of my treatment.
As I sat at my computer yesterday morning I was shivering away. There is a draft at that spot in my house so I didn't think much of it. But when I went upstairs to make lunch and was still shivering I thought I might need to take my temperature. It was up but not beyond the critical temperature of 100.4 degrees. I took a nap after a quick lunch and again took my temperature and it was around 101.
I called the number I've been given and was told to come in. Soon thereafter I learned that I would be admitted and, once here, I've learned that I will be here until the WBCs increase. I learned this morning that they are on the rise but that I'm not out of the danger zone. They took a lot of blood and other samples overnight and so far have not learned of any source of infection. They haven't even duplicated the temperature I took at home.
I've been told that infections are practically impossible to avoid while I have no ability to fight them off. That doesn't mean that I wasn't hoping to dodge this process. But, while I am here I am getting more information about my progress through the B1 phase of my treatment.
Tuesday, November 4, 2008
Update
First off: Get out and vote. I already cast my ballot as an absentee since it seemed like a pretty good possibility that I'd be either hospitalized or restricted from being around crowds. So I'm done!
Second, an update: Yesterday was a very long day at Hopkins. My appointment was for 9:00 and I was there until 6:30! The first order of business is to draw blood and test the blood counts. Very little can happen until they know that I won't bleed to death. They found that my white blood cells are pretty much nil and that I needed more blood transfusions--platelets AND red blood cells this time. I received two pints of platelets and was able to get the levels in my blood up to the absolute minimum needed to do the spinal tap. The spinal went well (at least judged against other spinal taps). It required only one stick and the pain felt was fleeting. My back is a little sore today but otherwise I'm glad to be 1/3 of the way through my scheduled spinal taps.
I'm scheduled for a quicker visit Wednesday. They are going to give me another pint of red blood cells (they wanted to give me a second pint yesterday but it was getting comically late) and of course test my blood counts. As soon as they get into the normal range again they'll start talking about when I can be readmitted for round 3, AKA A2 of my treatment plan.
Thank you all for easing my worries regarding the need for transfusions. I asked my head nurse about the further need for transfusions and she said that in her experience most patients need more of that sort of thing on the B-components of my treatment plan and that she'll let me know when I have something to worry about. Good to hear.
Finally, very early on I got asked about the possibility of donating blood and I directed the question to my primary physician. Her response was that with blood testing the way it is today they don't feel that such burdens (travel, time spent for donors and I'm also guessing administrative for the hospital) pay off. She said that Hopkins' blood supply is routinely strong and that if blood donation is a way that you'd like to support me you can do so by bolstering your local blood supply. So I guess the answer is no, you really don't need to donate blood directly to me but donating blood is a good idea and would support a regional system on which I am currently relying. If you decide to donate please let me know--I'd like the chance to say thanks.
Second, an update: Yesterday was a very long day at Hopkins. My appointment was for 9:00 and I was there until 6:30! The first order of business is to draw blood and test the blood counts. Very little can happen until they know that I won't bleed to death. They found that my white blood cells are pretty much nil and that I needed more blood transfusions--platelets AND red blood cells this time. I received two pints of platelets and was able to get the levels in my blood up to the absolute minimum needed to do the spinal tap. The spinal went well (at least judged against other spinal taps). It required only one stick and the pain felt was fleeting. My back is a little sore today but otherwise I'm glad to be 1/3 of the way through my scheduled spinal taps.
I'm scheduled for a quicker visit Wednesday. They are going to give me another pint of red blood cells (they wanted to give me a second pint yesterday but it was getting comically late) and of course test my blood counts. As soon as they get into the normal range again they'll start talking about when I can be readmitted for round 3, AKA A2 of my treatment plan.
Thank you all for easing my worries regarding the need for transfusions. I asked my head nurse about the further need for transfusions and she said that in her experience most patients need more of that sort of thing on the B-components of my treatment plan and that she'll let me know when I have something to worry about. Good to hear.
Finally, very early on I got asked about the possibility of donating blood and I directed the question to my primary physician. Her response was that with blood testing the way it is today they don't feel that such burdens (travel, time spent for donors and I'm also guessing administrative for the hospital) pay off. She said that Hopkins' blood supply is routinely strong and that if blood donation is a way that you'd like to support me you can do so by bolstering your local blood supply. So I guess the answer is no, you really don't need to donate blood directly to me but donating blood is a good idea and would support a regional system on which I am currently relying. If you decide to donate please let me know--I'd like the chance to say thanks.
Monday, November 3, 2008
Update/Funny story
Good Morning All:
I'm just giving a quick 'hello' and a reminder that I'm headed to Hopkins to try and get Friday's failed spinal tap out of the way. I'll be there most of the day.
Wanted to relay a funny exchange between my kids Audrey (age 4) and Nolan (age 7) yesterday. After a fairly quiet day at home we let the kids watch a movie last night. As always we let them negotiate with each other to try and arrive at the final selection. Audrey was interested in Aladdin while Nolan was thinking Peter Pan and they weren't really negotiating and instead were simply re-stating what they wanted to hear.
At one point Nolan wisely suggested, "Why don't we do Rock, Paper, Scissors, Shoot?" At this suggestion Audrey promptly replied, "Silly Nolan, we don't have that movie." As you can imagine Marla and I laughed heartily at this.
For those wondering what movie we ended up watching: Nolan won the Rock, Paper, Scissors best-two-out-of-three. I put Peter Pan in the DVD player and then the two of them decided that they would rather see the Rescue Heroes movie. Consensus reached we relaxed the last bit of a quiet Sunday away in our basement watching the Rescue Heroes save the world from certain doom.
I'm just giving a quick 'hello' and a reminder that I'm headed to Hopkins to try and get Friday's failed spinal tap out of the way. I'll be there most of the day.
Wanted to relay a funny exchange between my kids Audrey (age 4) and Nolan (age 7) yesterday. After a fairly quiet day at home we let the kids watch a movie last night. As always we let them negotiate with each other to try and arrive at the final selection. Audrey was interested in Aladdin while Nolan was thinking Peter Pan and they weren't really negotiating and instead were simply re-stating what they wanted to hear.
At one point Nolan wisely suggested, "Why don't we do Rock, Paper, Scissors, Shoot?" At this suggestion Audrey promptly replied, "Silly Nolan, we don't have that movie." As you can imagine Marla and I laughed heartily at this.
For those wondering what movie we ended up watching: Nolan won the Rock, Paper, Scissors best-two-out-of-three. I put Peter Pan in the DVD player and then the two of them decided that they would rather see the Rescue Heroes movie. Consensus reached we relaxed the last bit of a quiet Sunday away in our basement watching the Rescue Heroes save the world from certain doom.
Sunday, November 2, 2008
Pheeling good about the Phillies
On the blogger version of my blog (if you are reading Caring Bridge, please feel free to click the link to the blogger site--its pretty cool) I was asked by a co-worker to comment on the Philadelphia Phillies World Series win. Marie knows that I'm a baseball fan and that with my extra time probably took in a fair amount of the contest between the Phillies and the Tampa Bay Rays. I did watch the series and I do think there are lessons to be learned. Since my blog is devoted to my treatment I figured I'd slip in some of those lessons.
First of all, congrats to the Phillies. They were clearly the better team though the Rays did provide a fair amount of excitement throughout the playoffs. The Phillies won the series and perhaps their most dangerous hitter was in a slump to enter the contest. From young, exciting players like Ryan Howard, Chase Utley, Cole Hamels, and Jimmy Rollins to the improbable, respectable pitching performance from 47-year old Jamie Moyer the team simply didn't get challenged throughout the playoffs. I suspect they'll be just as good for several years so get used to them.
Now for the lessons: Prior to the season, the Phillies shortstop, Jimmy Rollins, predicted that his team would "win at least 100 games". Of course at the time he meant that they would win at least 100 of the normal 162 game season. In the end they fell short of that mark and won 92 games. As his team entered the playoffs Rollins was reminded of his prediction by the press. He smiled and replied, "I never said it would be regular season games." He and his team won 11 more playoff games to become world champs and finished with 103 wins for the season.
Conversely, the Tampa Bay Rays followed a very common pattern. The Rays came into the playoffs the 'team of destiny'. They went from last place in the prior season to first place this season--leading the free-spending Red Sox and Yankees practically from beginning to end. As the playoffs began they looked like they would breeze to a world series win. Everything was coming together--pitching, hitting, base running, defense. Then, in a fateful turn of events in the American League pennant series against the Red Sox the Rays collapsed. In the span of 2 and 1/3 innings they blew a 7-run lead and a chance to win that series 4 games to 1. While the Rays eventually did win that series in 7 games their 'team of destiny' status was irretrievably damaged and they simply were not the same team against the Phillies.
So what is there to learn? The Phillies' approach was to remain calm and positive and to do all the things within their control to achieve their desired outcome. The Rays, it can be argued, failed to maintain control of their outcome. At some point the 'team of destiny' ceased to do all the things that they had done to win their division and to breeze through the first 1.5 series of the playoffs. Even for professional atheletes the state-of-mind needed to achieve one's goal is not a light switch to be turned on at whim. Instead it is a habit, something that must be maintained throughout and this can trump physical abilities in many circumstances.
While all seems to be going well for me in the early stages of my treatment I think it is important that I don't simply assume that things will turn out well because I'm me (the cancer patient of destiny?). Instead, I need to do all the things within my control to get better and to keep the same positive focus that Jimmy Rollins had if/when things aren't as I predicted.
First of all, congrats to the Phillies. They were clearly the better team though the Rays did provide a fair amount of excitement throughout the playoffs. The Phillies won the series and perhaps their most dangerous hitter was in a slump to enter the contest. From young, exciting players like Ryan Howard, Chase Utley, Cole Hamels, and Jimmy Rollins to the improbable, respectable pitching performance from 47-year old Jamie Moyer the team simply didn't get challenged throughout the playoffs. I suspect they'll be just as good for several years so get used to them.
Now for the lessons: Prior to the season, the Phillies shortstop, Jimmy Rollins, predicted that his team would "win at least 100 games". Of course at the time he meant that they would win at least 100 of the normal 162 game season. In the end they fell short of that mark and won 92 games. As his team entered the playoffs Rollins was reminded of his prediction by the press. He smiled and replied, "I never said it would be regular season games." He and his team won 11 more playoff games to become world champs and finished with 103 wins for the season.
Conversely, the Tampa Bay Rays followed a very common pattern. The Rays came into the playoffs the 'team of destiny'. They went from last place in the prior season to first place this season--leading the free-spending Red Sox and Yankees practically from beginning to end. As the playoffs began they looked like they would breeze to a world series win. Everything was coming together--pitching, hitting, base running, defense. Then, in a fateful turn of events in the American League pennant series against the Red Sox the Rays collapsed. In the span of 2 and 1/3 innings they blew a 7-run lead and a chance to win that series 4 games to 1. While the Rays eventually did win that series in 7 games their 'team of destiny' status was irretrievably damaged and they simply were not the same team against the Phillies.
So what is there to learn? The Phillies' approach was to remain calm and positive and to do all the things within their control to achieve their desired outcome. The Rays, it can be argued, failed to maintain control of their outcome. At some point the 'team of destiny' ceased to do all the things that they had done to win their division and to breeze through the first 1.5 series of the playoffs. Even for professional atheletes the state-of-mind needed to achieve one's goal is not a light switch to be turned on at whim. Instead it is a habit, something that must be maintained throughout and this can trump physical abilities in many circumstances.
While all seems to be going well for me in the early stages of my treatment I think it is important that I don't simply assume that things will turn out well because I'm me (the cancer patient of destiny?). Instead, I need to do all the things within my control to get better and to keep the same positive focus that Jimmy Rollins had if/when things aren't as I predicted.
Saturday, November 1, 2008
Update
I was asked by a Caring Bridge site reader for an update on round 2 and how my response has been. I'll say that its been pretty smooth--I've got some sores in my mouth and throat but they don't interfere in eating really. Yesterday I thought I was starting to get that nauseous sorta feeling in the morning but fought my way through breakfast and took some medicine for that purpose (ew, my modifier is dangling there but I'll leave it in for comedy's sake--I took the medicine for nauseousness, not eating breakfast). As it turns out when I went to Hopkins I learned that my blood counts had dropped. The White Blood Cells are very low--right on schedule--so now I'm at high risk for infection and pretty much stuck at home. Also, my Red Blood Cells were very low. For those that don't have medical training or a reason to otherwise know this, Red Blood Cells carry oxygen from the lungs to your body.
As I look back on the morning I realize now that I was getting very winded running up and down the stairs in our split-level home helping Marla to get the kids ready for school/halloween parties. At any rate, the fix for that is to receive a blood transfusion. I suspect now that my feeling poorly in the morning relates more to the Red Blood Cell counts and not nauseousness. To me the need for a transfusion sounds scary and severe but was assured that this is a common part of cancer treatment and, in my regimen, particularly common for the 'B' treatments (see the link to the Hyper CVAD treatment plan to understand more). So, until someone tells me that needing a transfusion is a cause for concern I will trust my treatment team and remain unconcerned by it.
The spinal tap did not go so well. In fact it was unsuccessful after two attempts. According to the nurses, the spaces between my vertebrae are pretty small and after 3 prior taps (two requiring two attempts) the possible spaces are pretty well riddled with scar tissue. This means that the methodology will be changing on the spinal taps and they will be done under flouroscopy which I understand to mean they will use x-ray technology to determine the correct path/placement of the needles. I'm all for anything that will improve the experience as they are getting progressively worse and I've still got 9 more to get!
I'm home and feeling fine. Eating candy like mad--I've been directed to get plenty of calories and protein (there's protein in the nuts in Snickers, right?--stop laughing). Still have the same amount of energy and feel good. Here's to hoping that I dodge a fever during my neutropenic period, the WBC counts come up in short order, I get a bed at Hopkins and I move this process ahead by a week or so--how cool would that be?!
As I look back on the morning I realize now that I was getting very winded running up and down the stairs in our split-level home helping Marla to get the kids ready for school/halloween parties. At any rate, the fix for that is to receive a blood transfusion. I suspect now that my feeling poorly in the morning relates more to the Red Blood Cell counts and not nauseousness. To me the need for a transfusion sounds scary and severe but was assured that this is a common part of cancer treatment and, in my regimen, particularly common for the 'B' treatments (see the link to the Hyper CVAD treatment plan to understand more). So, until someone tells me that needing a transfusion is a cause for concern I will trust my treatment team and remain unconcerned by it.
The spinal tap did not go so well. In fact it was unsuccessful after two attempts. According to the nurses, the spaces between my vertebrae are pretty small and after 3 prior taps (two requiring two attempts) the possible spaces are pretty well riddled with scar tissue. This means that the methodology will be changing on the spinal taps and they will be done under flouroscopy which I understand to mean they will use x-ray technology to determine the correct path/placement of the needles. I'm all for anything that will improve the experience as they are getting progressively worse and I've still got 9 more to get!
I'm home and feeling fine. Eating candy like mad--I've been directed to get plenty of calories and protein (there's protein in the nuts in Snickers, right?--stop laughing). Still have the same amount of energy and feel good. Here's to hoping that I dodge a fever during my neutropenic period, the WBC counts come up in short order, I get a bed at Hopkins and I move this process ahead by a week or so--how cool would that be?!
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