A Moment Above The Fog
This is the first time since the beginning of April that I have had any desire to contribute to my blog...
I awoke at 4:30am yesterday and felt as though I had more alertness than I have experienced in many weeks.
A lesson I've learned is that - difficult days are not the end of all good times, and good days are not the end of difficult times... If I can hold onto this moment of clarity long enough, I hope to be able to update my records... The most challenging task that I want to advance is to keep ideas and information flowing, regarding the affects of my whole experience. Although the number of readers of this blog is dwindling (down to about 5 a week, from nearly 100), I need to document the story... for anyone who might benefit. I still have a desire to help someone with this knowledge / ideas.
First - What is the state of my recovery?
Oi... is seems so daunting a task to try to summarize the last 3 months.
1) According to my latest Pulmonary Function Test (PFT), aka "breathing test", my lungs are performing nearly exactly the same as they were in December 2006. That means that for nearly 7 months they have maintained at the same level - which is the longest period of stability I have had since my diagnosis.
---"Is this the result of the stem cell transplant (SCT)?"---
It is too soon to say that. Most likely, this stabilization is related to the high dosage chemotherapy that was part of the total treatment process. Jane Erickson, my mentor, has told me that her lungs are improving. Her SCT was performed in August 2005. The medical studies, that track results of our procedure, tend to report only results that are at least 1 year beyond transplant date.
2) The condition of my skin has remained the same. Most people who have SCT report a great reduction in "skin involvement". I haven't. It hasn't gotten any worse either. The contracture of my fingers has increased, perhaps, very little - left hand is contracted about 35-40 degrees, and the right hand is at about 50-55 degrees. My mouth is restricted about the same. Compared to many people who have sever skin involvement, I'm not bad at all... I can eat, and type... life is good. My range of motion is decreased. Most days I have trouble washing my left arm pit. That is a new development... or should I say un-development?
3) General physical condition is slightly degraded, since last December. Although my breathing is generally the same, my weight is down to about 165. My appetite has fluctuated and generally is OK. I eat 2+ meals a day and snack several times. My GERD (gastric system involvement) has been managed fairly well with Nexum and other meds. My muscles have atrophied. It is kind of the 'chicken vs. the egg' / cause and effect issue - am I weak because I don't move as much, or I don't move as much because I'm weak and achy??? Everyone in my family has an opinion... My brother-in-law (whom I love dearly) thinks exercise is the cure to all ills... and most people tend to agree with him. Interestingly - none of them is experiencing a chronic condition, first hand. Robbi, on the other hand, lives by the "air out your ass" method. This method keeps me aware of myself in the "now"... not focused on the pain, but with an intention on doing "something". Sometimes that means walking to the mailbox, driving around to do errands, or simply going for a ride with Robbi to get an ice cream cone.The most important thing I do every day is to focus on being productive. Sure there are days when I feel like a mush-brain (who doesn't?). The key is to do "something"!
4) Each day, when I get up, I have to assess the latest circumstances. Yesterday I awoke very early, and very alert. I took my meds and started to do things around the house (more about that stuff later). Later, I ran some errands and after an hour I began to feel like I should be home rather than driving around. By mid-afternoon I was on the couch, reading. I spent time on the phone with Dr. Ann's next SCT patient (more about her, later). By 7pm I was mentally tired and just watched the Red Sox and talked with Robbi, Emily, and her boy friend. Asleep before 10pm...
5) Since coming home, I've been through various stages, or events. Although some of them were serious issues, and had the doctors running around and guessing, Robbi has continued to be the best manager of the overall situation. Many of my medications have been added to, increased/decreased, discontinued and restarted. For the most part, I take more meds now than before I went to Maine.
---"So what does all this mean, for me, now?"---
The overall process has been an experience that has changed my life in ways that I hadn't anticipated. --- How much of a cliché is THAT??? --- What I mean is this... I think I am a pragmatic person. I learned as much as I could about SCTs and have maintained the lead role (with Robbi) in managing my health care. Together, we have accomplished things that people told us we were crazy to even attempt. We continue to baffle the majority of people we deal with, in all aspects of our lives. With all of the information, all of the support from caring family, friends, and talented professionals, and our own chutzpah and intuitiveness - we are confronted -daily- with new situations that require new or upgraded skills to be addressed. "It's always something."
Barely 2 months after I arrived home, I made several attempts to get back to work - to be Desktop David. Protected with mask and gloves, I ventured into clients homes to troubleshoot and resolve issues. I had limited my commitments to just a handful of high-priority clients and situations. I was slow moving and very careful to limit my physical exertion. Then I was unable to keep up the work load. It knocked the shit out of me. There were days, after some assignments, when I would go to bed after supper, and I wasn't able to wake up before 11am the next morning. My doctors suggested that perhaps I was pushing my self too soon and too fast - YOU THINK????????
I shouldn't be too sarcastic. After all, I'm the one who thought I could defy medical science and recover from all that I went through in 1/4 the expected time.
---Sometimes you eat bear, and sometimes the bear beats the crap out of you!---
Here it is, mid-July, and I am rarely able to assist clients. Mostly, I've been able to provide telephone support and even then, in a limited capacity. For several months I relied on Robbi to handle a majority of household tasks. Of late, I am able to take care of many of them... or at least to assist her in doing them. The main focus of my efforts has been to take as much of the burden off of her as I can. The one burden that I am not able to assist with - and the one that is the source of greatest stress - is the financial burden.
WHERE TO GO FROM HERE?
When I have days like today, with some mental clarity, I think often about what I may do with all this information and experience. Jane Erickson has developed a web site and spends a lot of her time mentoring others (like she has done for me), to guide them onto the path of treatments. She is focused on informing people about the benefits of the protocol we both were treated with - vs. the SCOT Trial, and it's use of full-body irradiation.
Throughout the process, Robbi and I have faced many issues for which the best resolution was either (a) not yet standardized and easily available, or more disturbingly, (b) hidden from our sight.
It's expected that when you choose a new or experimental procedure that there will be many untested choices to make along the way. So you gather information and ask for assistance from professionals and others who have traveled that road before. What you need to be aware of is that (as always) everyone of those people has their own ideas / prejudgments / agendas - and will be motivated to recommend solutions to you based on those matters. Sometimes, upon reexamination of those recommendations, you may find that your best interests were in conflict with those you wanted to trust.
I am not trying to be cryptic... actually I can be quite specific: Medical advice is provided by professionals, who are themselves beholden to multiple masters - including insurance providers, pharmaceutical companies, hospitals, and professional associations. Anyone of these groups may (and will) influence the advice that you will receive.
Why have I rambled on with this dark view of the medical profession? Because there are ways to minimize the negative affects. Robbi and I were able to - but not without some difficulties. The lessons we learned may benefit others.
++++++NOTE++++++
This commentary on "medical professionals" is not to be taken as a criticism of any specific persons. If I have had any specific concern with any specific person, they already know of it. So if you are reading this passage and wondering, "Is he referring to me?" The answer is "No." I am referring to specific situations that Robbi and I faced and unless we brought a particular concern directly to you, then you may be assured that you are not indicted by my commentary.
On that note - and because I'm mentally tired from all this thinking today, I will end this posting.
At this time I expect to pick it up again within a day or so. As long as I can keep the cognitive processes flowing, I will continue to update. There are a lot of things that I began to discuss back in April that I may address again...
I awoke at 4:30am yesterday and felt as though I had more alertness than I have experienced in many weeks.
A lesson I've learned is that - difficult days are not the end of all good times, and good days are not the end of difficult times... If I can hold onto this moment of clarity long enough, I hope to be able to update my records... The most challenging task that I want to advance is to keep ideas and information flowing, regarding the affects of my whole experience. Although the number of readers of this blog is dwindling (down to about 5 a week, from nearly 100), I need to document the story... for anyone who might benefit. I still have a desire to help someone with this knowledge / ideas.
First - What is the state of my recovery?
Oi... is seems so daunting a task to try to summarize the last 3 months.
1) According to my latest Pulmonary Function Test (PFT), aka "breathing test", my lungs are performing nearly exactly the same as they were in December 2006. That means that for nearly 7 months they have maintained at the same level - which is the longest period of stability I have had since my diagnosis.
---"Is this the result of the stem cell transplant (SCT)?"---
It is too soon to say that. Most likely, this stabilization is related to the high dosage chemotherapy that was part of the total treatment process. Jane Erickson, my mentor, has told me that her lungs are improving. Her SCT was performed in August 2005. The medical studies, that track results of our procedure, tend to report only results that are at least 1 year beyond transplant date.
2) The condition of my skin has remained the same. Most people who have SCT report a great reduction in "skin involvement". I haven't. It hasn't gotten any worse either. The contracture of my fingers has increased, perhaps, very little - left hand is contracted about 35-40 degrees, and the right hand is at about 50-55 degrees. My mouth is restricted about the same. Compared to many people who have sever skin involvement, I'm not bad at all... I can eat, and type... life is good. My range of motion is decreased. Most days I have trouble washing my left arm pit. That is a new development... or should I say un-development?
3) General physical condition is slightly degraded, since last December. Although my breathing is generally the same, my weight is down to about 165. My appetite has fluctuated and generally is OK. I eat 2+ meals a day and snack several times. My GERD (gastric system involvement) has been managed fairly well with Nexum and other meds. My muscles have atrophied. It is kind of the 'chicken vs. the egg' / cause and effect issue - am I weak because I don't move as much, or I don't move as much because I'm weak and achy??? Everyone in my family has an opinion... My brother-in-law (whom I love dearly) thinks exercise is the cure to all ills... and most people tend to agree with him. Interestingly - none of them is experiencing a chronic condition, first hand. Robbi, on the other hand, lives by the "air out your ass" method. This method keeps me aware of myself in the "now"... not focused on the pain, but with an intention on doing "something". Sometimes that means walking to the mailbox, driving around to do errands, or simply going for a ride with Robbi to get an ice cream cone.The most important thing I do every day is to focus on being productive. Sure there are days when I feel like a mush-brain (who doesn't?). The key is to do "something"!
4) Each day, when I get up, I have to assess the latest circumstances. Yesterday I awoke very early, and very alert. I took my meds and started to do things around the house (more about that stuff later). Later, I ran some errands and after an hour I began to feel like I should be home rather than driving around. By mid-afternoon I was on the couch, reading. I spent time on the phone with Dr. Ann's next SCT patient (more about her, later). By 7pm I was mentally tired and just watched the Red Sox and talked with Robbi, Emily, and her boy friend. Asleep before 10pm...
5) Since coming home, I've been through various stages, or events. Although some of them were serious issues, and had the doctors running around and guessing, Robbi has continued to be the best manager of the overall situation. Many of my medications have been added to, increased/decreased, discontinued and restarted. For the most part, I take more meds now than before I went to Maine.
---"So what does all this mean, for me, now?"---
The overall process has been an experience that has changed my life in ways that I hadn't anticipated. --- How much of a cliché is THAT??? --- What I mean is this... I think I am a pragmatic person. I learned as much as I could about SCTs and have maintained the lead role (with Robbi) in managing my health care. Together, we have accomplished things that people told us we were crazy to even attempt. We continue to baffle the majority of people we deal with, in all aspects of our lives. With all of the information, all of the support from caring family, friends, and talented professionals, and our own chutzpah and intuitiveness - we are confronted -daily- with new situations that require new or upgraded skills to be addressed. "It's always something."
Barely 2 months after I arrived home, I made several attempts to get back to work - to be Desktop David. Protected with mask and gloves, I ventured into clients homes to troubleshoot and resolve issues. I had limited my commitments to just a handful of high-priority clients and situations. I was slow moving and very careful to limit my physical exertion. Then I was unable to keep up the work load. It knocked the shit out of me. There were days, after some assignments, when I would go to bed after supper, and I wasn't able to wake up before 11am the next morning. My doctors suggested that perhaps I was pushing my self too soon and too fast - YOU THINK????????
I shouldn't be too sarcastic. After all, I'm the one who thought I could defy medical science and recover from all that I went through in 1/4 the expected time.
---Sometimes you eat bear, and sometimes the bear beats the crap out of you!---
Here it is, mid-July, and I am rarely able to assist clients. Mostly, I've been able to provide telephone support and even then, in a limited capacity. For several months I relied on Robbi to handle a majority of household tasks. Of late, I am able to take care of many of them... or at least to assist her in doing them. The main focus of my efforts has been to take as much of the burden off of her as I can. The one burden that I am not able to assist with - and the one that is the source of greatest stress - is the financial burden.
WHERE TO GO FROM HERE?
When I have days like today, with some mental clarity, I think often about what I may do with all this information and experience. Jane Erickson has developed a web site and spends a lot of her time mentoring others (like she has done for me), to guide them onto the path of treatments. She is focused on informing people about the benefits of the protocol we both were treated with - vs. the SCOT Trial, and it's use of full-body irradiation.
Throughout the process, Robbi and I have faced many issues for which the best resolution was either (a) not yet standardized and easily available, or more disturbingly, (b) hidden from our sight.
It's expected that when you choose a new or experimental procedure that there will be many untested choices to make along the way. So you gather information and ask for assistance from professionals and others who have traveled that road before. What you need to be aware of is that (as always) everyone of those people has their own ideas / prejudgments / agendas - and will be motivated to recommend solutions to you based on those matters. Sometimes, upon reexamination of those recommendations, you may find that your best interests were in conflict with those you wanted to trust.
I am not trying to be cryptic... actually I can be quite specific: Medical advice is provided by professionals, who are themselves beholden to multiple masters - including insurance providers, pharmaceutical companies, hospitals, and professional associations. Anyone of these groups may (and will) influence the advice that you will receive.
Why have I rambled on with this dark view of the medical profession? Because there are ways to minimize the negative affects. Robbi and I were able to - but not without some difficulties. The lessons we learned may benefit others.
++++++NOTE++++++
This commentary on "medical professionals" is not to be taken as a criticism of any specific persons. If I have had any specific concern with any specific person, they already know of it. So if you are reading this passage and wondering, "Is he referring to me?" The answer is "No." I am referring to specific situations that Robbi and I faced and unless we brought a particular concern directly to you, then you may be assured that you are not indicted by my commentary.
On that note - and because I'm mentally tired from all this thinking today, I will end this posting.
At this time I expect to pick it up again within a day or so. As long as I can keep the cognitive processes flowing, I will continue to update. There are a lot of things that I began to discuss back in April that I may address again...
posted by DesktopDavid at 4:06 PM
4 Comments:
Dave:
Good to hear from you! Everything takes time...some things take more time. From what you say, things are good and will get better.
Robbi- the limited amount that I know her is a terrific person and you both seem like you were meant for each other.
Hang in there. Don't push too hard...just a nudge at a time.
Take care.
Stu
We are fighting this together and I know things will get better for us. I too have good and bad days and I think of all the others who are a lot worse than I am. I think of you both daily and pray for you every night. We are strong damnit and we WILL beat this one way or another. I am here for you if you need ANYTHING!!!
Love,
Devona
Dave--
Sounds like you are doing exactly what you can do & need to do.
We've got a tough little community we are thinking of you.
Amy Daniels
Mr. Rubenstein
Hang in there. You are my ongoing hero and inspiration. I wish you nothing but the best. Thank God for your strength and your wonderful family who stands by you. You are blessed in love my friend.
Love Sheri Kaplan - Cindy's neice
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