The one I haven't felt like adding but...
It appears things are declining, and fairly rapidly, dammit. We had hoped to perhaps be able to drain the bile ducts out but that appears to be out, so any treatment seems to be at an end. Kinda of a bummer. My oncologist told me that I could be I could be looking at 3-4 months, give or take; it is inexact science; it could be considerably less as well. More later (hopefullly!) as I feel up it. But one thing I did want to add now is my uptmost areciation and support that I have received from sooooooooooo many people, from sooooooooooooo many different sources; totallly unepected yet totoally appreciated. Thank you.
Sunday, May 4, 2014
Wednesday, April 2, 2014
4.02.14
Sometimes I don't know if this is more like the journal Don Draper kept in season 4 of Mad Men or like the diary Travis Bickle kept in Taxi Driver but...
I received an email last month from a very good, long-time friend. A lot of times when I write these entries I often receive a lot of complimentary, um, compliments. But sometimes I wonder if these are for real or if they are from good people trying to make Poor Sick Vito feel better. A cathartic exercise for me certainly but, to my mind, of dubious worth to anyone else. But this note came from someone who has no reason to, and wouldn't, bullshit me.
He mentioned what he's gotten out of reading my thoughts, experiences, and such, about how various experiences and the emotions and actions that they cause weave their way through our lives, and how some of my thoughts and experiences resonate with things he'd gone through, and goes through, in his life, in all our lives, looking at and trying to grow from where we each/all may have been to- hopefully- become better people today. Triumphs and trials, successes and setbacks, they all shape us, often in ways we don't truly realize and have to make continuous effort to control.
I was stunned when I finished reading. I tend to think that I'm a fairly low-key, unassuming person. Many people- family, friends, strangers- have made an impact upon me and my life- most of them for the good!- many times without their even realizing it. But truly, it blew my mind to think that my thoughts, my words, my experiences- myself- actually have any real, tangible impact upon anyone else. It's not false modesty, nor it is low self-esteem; I'm just not wired to think of myself in that way. It was a very humbling and, at the same time, very powerful, message to receive. Thanks.
Or you could have just been bullshitting me...
I received an email last month from a very good, long-time friend. A lot of times when I write these entries I often receive a lot of complimentary, um, compliments. But sometimes I wonder if these are for real or if they are from good people trying to make Poor Sick Vito feel better. A cathartic exercise for me certainly but, to my mind, of dubious worth to anyone else. But this note came from someone who has no reason to, and wouldn't, bullshit me.
He mentioned what he's gotten out of reading my thoughts, experiences, and such, about how various experiences and the emotions and actions that they cause weave their way through our lives, and how some of my thoughts and experiences resonate with things he'd gone through, and goes through, in his life, in all our lives, looking at and trying to grow from where we each/all may have been to- hopefully- become better people today. Triumphs and trials, successes and setbacks, they all shape us, often in ways we don't truly realize and have to make continuous effort to control.
I was stunned when I finished reading. I tend to think that I'm a fairly low-key, unassuming person. Many people- family, friends, strangers- have made an impact upon me and my life- most of them for the good!- many times without their even realizing it. But truly, it blew my mind to think that my thoughts, my words, my experiences- myself- actually have any real, tangible impact upon anyone else. It's not false modesty, nor it is low self-esteem; I'm just not wired to think of myself in that way. It was a very humbling and, at the same time, very powerful, message to receive. Thanks.
Or you could have just been bullshitting me...
Thursday, March 13, 2014
3.13.14
U2 once sang "Sometimes You Can't Make it On Your Own." I've been determined to prove that false re. my cancer. I've endeavored to assert my will over my cancer, not vice versa.
Control. Perhaps the most difficult thing re. all of this has been the possibility of having to give up control. I've mentioned over and over the frustration of not being able to control what is going on within my own body, and that is something I likely will never adequately accept. I do have the utmost faith and confidence in the care and choices that my oncologist has presented me with; I trust in her judgment implicitly. But as much as I cannot control the cancer itself I can control what I wish to do about it, how I wish to have it treated. Those are ultimately my decisions, my choices, ultimately it is up to me to control what I wish to do in terms of treatment.
Similarly I have not wanted to give up control over myself, become dependent upon others. I have had so many good- no, great- people offer me all sorts of assistance and support, be it driving me to treatment and other doc appointments (or giving me public ridicule- always welcomed!) offering to visit me while I've been undergoing treatment, etc... offering to allow me to vent. I appreciate these, much more than you folks know. The offers are truly touching, and humbling. But from the get-go with this one thing I've been determined more than anything else not to do is to be a burden upon nor a bother to anyone. Besides the fact that many people have significant issues in their own lives to deal with and overcome- ideally I'd like to be the one who is there for them, I'm far more comfortable in that role- I also do not feel comfortable giving up that sense of control over myself that comes from letting others do too much for me. Again, I do not- can not?- want to be a burden or a bother to anyone, nor dependent upon anyone. I'm more comfortable being there for others, in whatever way/s I can.
Lastly, and not to be morbid as- hopefully!- this choice is still quite a ways off but when that time inevitably comes when things take that last turn for the worse, I will control, it will be my choice, how to handle the end game. I'll make that choice, I will not let cancer make it for me.
The ultimate control.
Control. Perhaps the most difficult thing re. all of this has been the possibility of having to give up control. I've mentioned over and over the frustration of not being able to control what is going on within my own body, and that is something I likely will never adequately accept. I do have the utmost faith and confidence in the care and choices that my oncologist has presented me with; I trust in her judgment implicitly. But as much as I cannot control the cancer itself I can control what I wish to do about it, how I wish to have it treated. Those are ultimately my decisions, my choices, ultimately it is up to me to control what I wish to do in terms of treatment.
Similarly I have not wanted to give up control over myself, become dependent upon others. I have had so many good- no, great- people offer me all sorts of assistance and support, be it driving me to treatment and other doc appointments (or giving me public ridicule- always welcomed!) offering to visit me while I've been undergoing treatment, etc... offering to allow me to vent. I appreciate these, much more than you folks know. The offers are truly touching, and humbling. But from the get-go with this one thing I've been determined more than anything else not to do is to be a burden upon nor a bother to anyone. Besides the fact that many people have significant issues in their own lives to deal with and overcome- ideally I'd like to be the one who is there for them, I'm far more comfortable in that role- I also do not feel comfortable giving up that sense of control over myself that comes from letting others do too much for me. Again, I do not- can not?- want to be a burden or a bother to anyone, nor dependent upon anyone. I'm more comfortable being there for others, in whatever way/s I can.
Lastly, and not to be morbid as- hopefully!- this choice is still quite a ways off but when that time inevitably comes when things take that last turn for the worse, I will control, it will be my choice, how to handle the end game. I'll make that choice, I will not let cancer make it for me.
The ultimate control.
Friday, March 7, 2014
3.07.14
I believe I had mentioned that my oncologist and I had decided to embark upon participation in a phase 1 clinical trial for my cancer (the particulars can be found at this link for those interested: A First in Man Trial for Patients With Cancer.) In preparation for/to determine if I was physically eligible to participate I had a series of tests done this past Wednesday (lab work, ECG, chest x-ray, CT scan, PT scan- a lot of radiation!) I received the results earlier today. The lab work showed some increase in liver function #'s as well as CEA but not significantly changed from the previous sets of labs done about a month ago, and the increases were consistent with having been off of treatment for a month+ (to participate in a trial they also have to let previous meds completely exit the body, hence my month of non-treatment.) My oncologist didn't seems especially concerned with the #'s, again, given my time off from treatment as well as trending we had seen, and the fact that this has been going on for almost three years now. Somewhat more troubling were the results of the x-ray and scans; the x-ray indicated some- small- nodules within my lungs, which was/is something new. The CT scan showed that the existing tumors on my liver had increased somewhat in size (in and of itself not especially worrisome, again, due to time off from treatment, trending, and how far along I am into all of this) but also showed a tumor on my spleen, which is something else new and previously undetected. The PT scan confirmed that the areas on both my liver and spleen where the tumors were seen are more metabolically active than other areas (it didn't detect that re. the lungs, which could indicate that they may not be cancerous, or are simply so small as to not show up.) None of these findings affect my eligibility for the trial; I begin that this coming Wednesday. What they do indicate is that things do appear to be progressing, which obviously isn't great news. While concerned my oncologist believes that, given where I am so far (organ function hasn't been adversely impacted yet) and how I'm feeling overall (still damn good!) we ought to be able to manage things for awhile yet- several months at least- but likely not years (plural.) She didn't give me the equivalent of the two-minute warning!
Honestly, I was anticipating worse news than I received. I've had some aches (nagging more than limiting) recently and was concerned that there might be massive spread, organ failure, who knows what. And as I was telling a good friend just this morning, for me the worst part is the not knowing, the waiting, the uncertainty; good or not-so-good I can manage and deal, I can handle that, but being left hanging, uncertainty, those things drive me batshit crazy, so I was appreciative that my onc gave me the results in a timely manner.
So I move on. I'll see what, if any, benefits accrue from the investigational drug I'll be starting next week. There are still one or two things beyond that to go to as well. The damnedest thing is, minor aches aside, how well I still feel physically- hit the treadmill for a run this am, got back from the gym a little while ago, have good energy, appetite, etc... And I'm fully aware that there are a LOT of people who have health issues- hell, issues of all sorts- to deal with in their lives, many of them far more challenging than anything on my plate. I have admiration for and gain strength from them, seeing how they deal, and it fills me with gratitude that my issues are manageable.
And damn... will this winter ever end?! It has been way too cold for way too long- I want a cold drink (or several!) on a hot beach!
Honestly, I was anticipating worse news than I received. I've had some aches (nagging more than limiting) recently and was concerned that there might be massive spread, organ failure, who knows what. And as I was telling a good friend just this morning, for me the worst part is the not knowing, the waiting, the uncertainty; good or not-so-good I can manage and deal, I can handle that, but being left hanging, uncertainty, those things drive me batshit crazy, so I was appreciative that my onc gave me the results in a timely manner.
So I move on. I'll see what, if any, benefits accrue from the investigational drug I'll be starting next week. There are still one or two things beyond that to go to as well. The damnedest thing is, minor aches aside, how well I still feel physically- hit the treadmill for a run this am, got back from the gym a little while ago, have good energy, appetite, etc... And I'm fully aware that there are a LOT of people who have health issues- hell, issues of all sorts- to deal with in their lives, many of them far more challenging than anything on my plate. I have admiration for and gain strength from them, seeing how they deal, and it fills me with gratitude that my issues are manageable.
And damn... will this winter ever end?! It has been way too cold for way too long- I want a cold drink (or several!) on a hot beach!
Friday, February 21, 2014
2.21.14
A little self-indulgent, or self-centered, or self something this afternoon, but...
One thing that has been challenging for me since all of this began was/is figuring out how, or even if, to, how to put it, get closer to or allow people to get closer to me. It probably sounds contradictory given the nature of this blog but, as anyone who knows me reasonably well knows, I've never been the most out-going of people. I'm comfortable with people that I've known well for a long time but befriending, meeting, getting to know people I maybe didn't/don't know as well, or making new acquaintances, well, that's always been a bit difficult for me (especially sober!) Distant, reserved probably best describe. While in some ways the last few years, given what I know re. my health, has made me somewhat more outgoing- friendlier even?!- than I probably was pre-diagnosis, that knowledge can also prove limiting. How much, how many people, do I want to get close to, or more importantly, allow to get close to me, given that my long-term is far more short-term than I ever anticipated just a few years ago? So many people have been so good, so supportive, so kind... I don't want to hurt or disappoint them by my not- likely- being around all that long; that's not fair to them. Perhaps it sounds arrogant but I'd like people to think reasonably well of me after I'm gone and much of that, to my mindset, is not hurting or disappointing people, nor being a burden or bother to anyone. It's less about me than it is about others; I do endeavor to do my best on that score. I guess it's destined to be a balancing act, one I probably won't adequately resolve but will try to err on the side of putting others first. Just thinking out loud I guess... (or maybe it's the weather!)
None of this is to mean my demise is imminent. I still feel great, we still have a few tricks left in the hat to try and continue to keep this manageable- no need to start that pool yet! But part of what Jim Floyd suggested way back when I first started this blog was:
Use some of your time to write down what you’re going through...the reactions you’re getting from others...the plans you must make/change...the way you see/perceive things through this particular looking glass.
One thing that has been challenging for me since all of this began was/is figuring out how, or even if, to, how to put it, get closer to or allow people to get closer to me. It probably sounds contradictory given the nature of this blog but, as anyone who knows me reasonably well knows, I've never been the most out-going of people. I'm comfortable with people that I've known well for a long time but befriending, meeting, getting to know people I maybe didn't/don't know as well, or making new acquaintances, well, that's always been a bit difficult for me (especially sober!) Distant, reserved probably best describe. While in some ways the last few years, given what I know re. my health, has made me somewhat more outgoing- friendlier even?!- than I probably was pre-diagnosis, that knowledge can also prove limiting. How much, how many people, do I want to get close to, or more importantly, allow to get close to me, given that my long-term is far more short-term than I ever anticipated just a few years ago? So many people have been so good, so supportive, so kind... I don't want to hurt or disappoint them by my not- likely- being around all that long; that's not fair to them. Perhaps it sounds arrogant but I'd like people to think reasonably well of me after I'm gone and much of that, to my mindset, is not hurting or disappointing people, nor being a burden or bother to anyone. It's less about me than it is about others; I do endeavor to do my best on that score. I guess it's destined to be a balancing act, one I probably won't adequately resolve but will try to err on the side of putting others first. Just thinking out loud I guess... (or maybe it's the weather!)
None of this is to mean my demise is imminent. I still feel great, we still have a few tricks left in the hat to try and continue to keep this manageable- no need to start that pool yet! But part of what Jim Floyd suggested way back when I first started this blog was:
Use some of your time to write down what you’re going through...the reactions you’re getting from others...the plans you must make/change...the way you see/perceive things through this particular looking glass.
If nothing else, it will prove an exercise that gives you focus and perspective.
If anyone gets anything out of this blog beyond a far-too revealing into my warped mindset, it will have been meaningful.
Wednesday, February 12, 2014
2.12.14
Well, it looks like I get to be a human guinea pig! This morning I received the results from a CT scan I had last week. The good news: still no new growths nor spread to any other organs beyond the liver. The not-as-good news: the existing tumors have grown in size, not quite as much as I had anticipated but enough that, coupled with some blood lab #s over the past month+, indicate that the treatment regimen I had been on since last summer has reached the end of it's efficacy. My oncologist and I discussed a few options this morning; one was proceeding to regorafenib, which is pretty much the last-line standard treatment for colon cancer, the other was participation in a phase 1 clinical research trial for a drug under development, the purposes of which are, obviously, to determine if it has much/any efficacy in keeping the cancer at bay, as well as to determine how people react (side effects, etc...) to it, what possible effects it may have, positive or adverse, upon patients. In short, they are seeking to discover more about the effect of the trial drug upon the disease well as the patient, how it is metabolized throughout the body, those sorts of things. Phase 1 trials are the starting point in developing potentially beneficial treatments, the first phase in which they are tested upon human subjects. My oncologist believes that this is the best possible option right now, as we can still keep regorafenib in the bullpen down the road. I have some things to review re. the trial before giving my consent, and then they conduct a preliminary health screening to make sure there is nothing to disqualify me as a participant, but I'm inclined to do it. If nothing else, it helps advance research, data, and knowledge in the field, it provides me with some small way in which to try and give back and perhaps do something beneficial for others who may be afflicted with colon cancer in the future, plus there is the possibility that it could have benefits in keeping my cancer at bay for awhile longer yet.
Even after all of this time it is still difficult for me to truly comprehend that I have as serious a condition as I do. Obviously I see and am aware of the scan results, the lab #s, certainly going to receive treatment every other week was/is a reminder, but... I still feel so damn well! I have no pain, no nausea or anything, no fatigue to speak of, I workout twice a day (run in the early morning, lift/cardio later in the day) I'm able to do all of the day-to-day things that I've always done. My weight is down a bit (I'm the lightest I've been since 8th grade!) but food still appeals, and some of that weight loss may be due to my activity level. And it still frustrates the living hell out of me that there is nothing I can do- me, pro-actively, of/through my own effort- to beat this thing back and recover from it, defeat it. I've made the comparison before; if it were an injury, yeah, a surgeon could repair the initial damage but then I could work to rehab, strengthen, and heal it as well. If it were like heart disease or diabetes, yeah, a surgeon could perform a procedure if necessary, a doctor might prescribe meds to help with it, but I could also take pro-active steps- change of diet, exercise, relaxation techniques, whatever- to also positively impact and aid in recovery. But this... I can't exercise my liver to reduce or eliminate the tumors, diet has no effect upon it (I eat pretty damn cleanly as is, even drink very moderately!) I can try to keep the rest of my body as healthy and fit as possible but that doesn't defeat the cancer. Again, even after all of this time now, it is still very difficult for me to accept that I cannot control what happens with/within my own body.
I probably never will.
Even after all of this time it is still difficult for me to truly comprehend that I have as serious a condition as I do. Obviously I see and am aware of the scan results, the lab #s, certainly going to receive treatment every other week was/is a reminder, but... I still feel so damn well! I have no pain, no nausea or anything, no fatigue to speak of, I workout twice a day (run in the early morning, lift/cardio later in the day) I'm able to do all of the day-to-day things that I've always done. My weight is down a bit (I'm the lightest I've been since 8th grade!) but food still appeals, and some of that weight loss may be due to my activity level. And it still frustrates the living hell out of me that there is nothing I can do- me, pro-actively, of/through my own effort- to beat this thing back and recover from it, defeat it. I've made the comparison before; if it were an injury, yeah, a surgeon could repair the initial damage but then I could work to rehab, strengthen, and heal it as well. If it were like heart disease or diabetes, yeah, a surgeon could perform a procedure if necessary, a doctor might prescribe meds to help with it, but I could also take pro-active steps- change of diet, exercise, relaxation techniques, whatever- to also positively impact and aid in recovery. But this... I can't exercise my liver to reduce or eliminate the tumors, diet has no effect upon it (I eat pretty damn cleanly as is, even drink very moderately!) I can try to keep the rest of my body as healthy and fit as possible but that doesn't defeat the cancer. Again, even after all of this time now, it is still very difficult for me to accept that I cannot control what happens with/within my own body.
I probably never will.
Sunday, December 29, 2013
12.29.13
A few thoughts as the year winds down... I have a lot to be grateful and thankful for; first and foremost, that I'm still here. The beginning of this year I wasn't certain if I'd still be around, let alone still feeling healthy and well; all a credit to the incredible knowledge and expertise my medical people have expended on my behalf. I cannot thank them enough.
While there are some areas in my life where I haven't experienced or achieved all that I would have liked to, one area in which I've always and truly been blessed- and I know I've written this before- is to be surrounded by so many great people, from all of my walks of life. I've never been an especially sentimental person but it bears repeating on my part because I truly appreciate, and am very humbled by, my associations and friendships with so many good, solid, caring people- honestly, more than I've often deserved. Particularly nice has been reconnecting with so many people from Easton; I've kept good contact with friends from college over the years but, apart from a few of The Boys, I hadn't had much contact with a lot of Easton folks for a long time, to the point that I'm surprised people remembered me. It's been heartening, and humbling, to reconnect with such good people. There are many important things in life, but I truly believe that they all start with people. Any material success, or happiness, or whatever else we achieve, if we don't have good people to share those things with, how successful, how fulfilled, are we?
One area I am frustrated with is/are my workouts. In my mind I often still feel like I'm 18 (or at least 30!) and I get frustrated that I cannot do what I did at 18, or even 40. My running mileage and times are both down, I can't lift nearly as much weight as I once did, cardio workouts are more difficult; I do what I can but damn, it is frustrating. I don't know if it's from the cancer, cumulative effects of the chemo, being in my later 40's, or simply that I need to push myself harder but it frustrates the living hell out of me that I'm not doing what I feel I should be capable of doing.
I don't know what 2014 holds. This May will mark three years since my cancer odyssey began. It doesn't dominate my thoughts 24/7 but in the back of my mind I am aware that I'm on the clock. I feel well now; how well I'm feeling 8-10 months from now, well, that remains to be seen. As I mentioned above I have some truly dedicated and talented people working on my behalf; they know their stuff. I still have things that I want and need to do. I'm not a New Years Resolution kind of person but I probably could stand to live my life with a little more passion, a little more urgency, take more- wholesome- risks, take on more challenges.
Hold me to that.
Best wishes for a happy, healthy, and prosperous 2014!
While there are some areas in my life where I haven't experienced or achieved all that I would have liked to, one area in which I've always and truly been blessed- and I know I've written this before- is to be surrounded by so many great people, from all of my walks of life. I've never been an especially sentimental person but it bears repeating on my part because I truly appreciate, and am very humbled by, my associations and friendships with so many good, solid, caring people- honestly, more than I've often deserved. Particularly nice has been reconnecting with so many people from Easton; I've kept good contact with friends from college over the years but, apart from a few of The Boys, I hadn't had much contact with a lot of Easton folks for a long time, to the point that I'm surprised people remembered me. It's been heartening, and humbling, to reconnect with such good people. There are many important things in life, but I truly believe that they all start with people. Any material success, or happiness, or whatever else we achieve, if we don't have good people to share those things with, how successful, how fulfilled, are we?
One area I am frustrated with is/are my workouts. In my mind I often still feel like I'm 18 (or at least 30!) and I get frustrated that I cannot do what I did at 18, or even 40. My running mileage and times are both down, I can't lift nearly as much weight as I once did, cardio workouts are more difficult; I do what I can but damn, it is frustrating. I don't know if it's from the cancer, cumulative effects of the chemo, being in my later 40's, or simply that I need to push myself harder but it frustrates the living hell out of me that I'm not doing what I feel I should be capable of doing.
I don't know what 2014 holds. This May will mark three years since my cancer odyssey began. It doesn't dominate my thoughts 24/7 but in the back of my mind I am aware that I'm on the clock. I feel well now; how well I'm feeling 8-10 months from now, well, that remains to be seen. As I mentioned above I have some truly dedicated and talented people working on my behalf; they know their stuff. I still have things that I want and need to do. I'm not a New Years Resolution kind of person but I probably could stand to live my life with a little more passion, a little more urgency, take more- wholesome- risks, take on more challenges.
Hold me to that.
Best wishes for a happy, healthy, and prosperous 2014!
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