I just wanted to take a moment to update all of you on the results of my 9 month post-transplant scans. These three month check-ups have become part of the nerve-wrecking pattern that my life has now assumed, at least the next few year. Not fun, but important and unavoidible. This Decembers scan was especially taxing because it was this time last year that my scans showed what would become a relapse. I have been feeling pretty good for the most part, with my energy and clarity of mind returning almost to pre-treatment levels. My lungs and sense of touch are still not back and although they are not expected to ever fully recover, I am finding ways around the limits they impose.
With that said, there was a small spot that "lit" up of my PET/CT scan that is a possible cause for concern. A PET scan, in simple terms, measures metabolic "heat" and some things, like cancer, infections etc. give off more heat then "normal" tissue. This hot spot could be a number things. It could be a simple infection, that will resolve itself, it could be the natural regrowth of nodes after their being destroyed by therapies, and, of course, it could be cancer. This spot is very very small, less then 2 cm, and in a people with not Lymphoma history would be a matter of no concern, but for someone as "special" as I am (haha) it causes at very least a raised eye-brow- the first thought being cancer.
The only way to know for sure what is going on is to remove the node and have it biopsied. This would require a full blown surgery and as much as I want a sweet new scar the idea of yet another surgery is not all that appealing. All of my doctors seem to agree that this single small node, while cause for concern, it not worth the risk of surgery at this time. The plan is to wait about 6 weeks, repeat the scans and see if the node has grown or disappeared. Needless to say this is less then an ideal answer, spending the next month and a half in a (another) cancer limbo is not really a productive, happy, even state of mind, but this seems to be the best solution at the present time. Thank you so much for all of you that have been there for me through out all this and I'll sure to keep all of you up to speed as soon as I know more.
Take care and GOOD LUCK!
All the best,
Darrel
"For last year's words belong to last year's language. And next year's
words await another voice. (...) And to make an end is to make a
beginning."
-- T.S. Eliot
Friday, January 4, 2008
Tuesday, September 4, 2007
Zarathustra
"Then, when it was about midnight, Zarathustra went his way over the ridge of the isle, that he might arrive early in the morning at the other coast; because there he meant to embark. For there was a good roadstead there, in which foreign ships also liked to anchor: those ships took many people with them, who wished to cross over from the Happy Isles. So when Zarathustra thus ascended the mountain, he thought on the way of his many solitary wanderings from youth onwards, and how many mountains and ridges and summits he had already climbed.
I am a wanderer and mountain-climber, said he to his heart. I love not the plains, and it seemeth I cannot long sit still.
And whatever may still overtake me as fate and experience—a wandering will be therein, and a mountain-climbing: in the end one experienceth only oneself.
The time is now past when accidents could befall me; and what could now fall to my lot which would not already be mine own!
It returneth only, it cometh home to me at last—mine own Self, and such of it as hath been long abroad, and scattered among things and accidents.
And one thing more do I know: I stand now before my last summit, and before that which hath been longest reserved for me. Ah, my hardest path must I ascend! Ah, I have begun my lonesomest wandering!
He, however, who is of my nature doth not avoid such an hour: the hour that saith unto him: Now only dost thou go the way to thy greatness! Summit and abyss—these are now comprised together!
Thou goest the way to thy greatness: now hath it become thy last refuge, what was hitherto thy last danger!
Thou goest the way to thy greatness: it must now be thy best courage that there is no longer any path behind thee!
Thou goest the way to thy greatness: here shall no one steal after thee! Thy foot itself hath effaced the path behind thee, and over it standeth written: Impossibility.
And if all ladders henceforth fail thee, then must thou learn to mount upon thine own head: how couldst thou mount upward otherwise?
Upon thine own head, and beyond thine own heart! Now must the gentlest in thee become the hardest.
He who hath always much-indulged himself, sickeneth at last by his much-indulgence. Praises on what maketh hardy! I do not praise the land where butter and honey—flow!
To learn to look away from oneself, is necessary in order to see many things.—this hardiness is needed by every mountain-climber.
He, however, who is obtrusive with his eyes as a discerner, how can he ever see more of anything than its foreground!
But thou, O Zarathustra, wouldst view the ground of everything, and its background: thus must thou mount even above thyself—up, upwards, until thou hast even thy stars under thee!
Yea! To look down upon myself, and even upon my stars: that only would I call my summit, that hath remained for me as my last summit!—
Thus spake Zarathustra to himself while ascending, comforting his heart with harsh maxims: for he was sore at heart as he had never been before. And when he had reached the top of the mountain-ridge, behold, there lay the other sea spread out before him; and he stood still and was long silent. The night, however, was cold at this height, and clear and starry.
I recognise my destiny, said he at last, sadly. Well! I am ready. Now hath my last lonesomeness begun.
Ah, this sombre, sad sea, below me! Ah, this sombre nocturnal vexation! Ah, fate and sea! To you must I now go down!
Before my highest mountain do I stand, and before my longest wandering: therefore must I first go deeper down than I ever ascended:
—Deeper down into pain than I ever ascended, even into its darkest flood! So willeth my fate. Well! I am ready.
Whence come the highest mountains? so did I once ask. Then did I learn that they come out of the sea.
That testimony is inscribed on their stones, and on the walls of their summits. Out of the deepest must the highest come to its height.—"
I am a wanderer and mountain-climber, said he to his heart. I love not the plains, and it seemeth I cannot long sit still.
And whatever may still overtake me as fate and experience—a wandering will be therein, and a mountain-climbing: in the end one experienceth only oneself.
The time is now past when accidents could befall me; and what could now fall to my lot which would not already be mine own!
It returneth only, it cometh home to me at last—mine own Self, and such of it as hath been long abroad, and scattered among things and accidents.
And one thing more do I know: I stand now before my last summit, and before that which hath been longest reserved for me. Ah, my hardest path must I ascend! Ah, I have begun my lonesomest wandering!
He, however, who is of my nature doth not avoid such an hour: the hour that saith unto him: Now only dost thou go the way to thy greatness! Summit and abyss—these are now comprised together!
Thou goest the way to thy greatness: now hath it become thy last refuge, what was hitherto thy last danger!
Thou goest the way to thy greatness: it must now be thy best courage that there is no longer any path behind thee!
Thou goest the way to thy greatness: here shall no one steal after thee! Thy foot itself hath effaced the path behind thee, and over it standeth written: Impossibility.
And if all ladders henceforth fail thee, then must thou learn to mount upon thine own head: how couldst thou mount upward otherwise?
Upon thine own head, and beyond thine own heart! Now must the gentlest in thee become the hardest.
He who hath always much-indulged himself, sickeneth at last by his much-indulgence. Praises on what maketh hardy! I do not praise the land where butter and honey—flow!
To learn to look away from oneself, is necessary in order to see many things.—this hardiness is needed by every mountain-climber.
He, however, who is obtrusive with his eyes as a discerner, how can he ever see more of anything than its foreground!
But thou, O Zarathustra, wouldst view the ground of everything, and its background: thus must thou mount even above thyself—up, upwards, until thou hast even thy stars under thee!
Yea! To look down upon myself, and even upon my stars: that only would I call my summit, that hath remained for me as my last summit!—
Thus spake Zarathustra to himself while ascending, comforting his heart with harsh maxims: for he was sore at heart as he had never been before. And when he had reached the top of the mountain-ridge, behold, there lay the other sea spread out before him; and he stood still and was long silent. The night, however, was cold at this height, and clear and starry.
I recognise my destiny, said he at last, sadly. Well! I am ready. Now hath my last lonesomeness begun.
Ah, this sombre, sad sea, below me! Ah, this sombre nocturnal vexation! Ah, fate and sea! To you must I now go down!
Before my highest mountain do I stand, and before my longest wandering: therefore must I first go deeper down than I ever ascended:
—Deeper down into pain than I ever ascended, even into its darkest flood! So willeth my fate. Well! I am ready.
Whence come the highest mountains? so did I once ask. Then did I learn that they come out of the sea.
That testimony is inscribed on their stones, and on the walls of their summits. Out of the deepest must the highest come to its height.—"
Tuesday, August 21, 2007
Revival/Drug list
Hey everyone- I am back. I took a little break from posting here mainly because I got to a point where I was trying to rein some of my emotions about my treatment and I felt that many of philosophical musings need more time cure before they would be fit for the printed word. I am back because my life is becoming so hectic that don't have enough to reflect, something I enjoyed about treatment. I am hoping that posting here will force me to work more things out. Also, I've come to some conclusions about how much people will actually be able to relate to my experience and since I've found that most will largely miss the mark it is easier to rely on the un-judgemental face of the void then on the human face of indifference. Depressing I know, but a man's knowledge is no bigger then his experiences, so if you can't relate, I am to some degree happy for you...
I am in the process of getting my life restarted. Much of early recovery was focused on getting physically back into some kind of shape. It's hard to get much done when you can't walk up the stairs without being tired. I also felt that post-transplant side effects were best avoided by putting myself in the best possible place physically. I think that to this aim I have largely succeeded. I am not in amazing shape but by comparison, I've come an amazing distance in the 130 some days since transplant. I've done alot of biking; almost 700 miles since I was released from the hospital. I've also done some hike and once the school year start I hope to add a light weight work to the cardio of my biking regimen. I guess that is the other big development. My graduate program, the Cincinnati-College Conservatory of Music, finally got there act together and decided my fate for next year. I'll be starting my master's this fall and am glad to be really getting a chance to move on. I think that moving across the country will force me to come to terms with the past 16 months much quicker then if I were to be staying here in Denver. I pretty much don't know a soul in Cincinnati, so it will be a clean start, to see if all this has actually taught me anything.
I have been doing a little bit of traveling of sorts. I took a little vacation to Breck/Aspen/Grand Junction which was not so much relaxing but very fun. I got to see some people that are very dear to me that have too long been absent from the scene. It was good to dip my toe into the stream of life and see that all this goes on, within and without me. I also made two stressful trips down to The Methodist Hospital in Houston to take part in a clinical trial to create a vaccine against Epstein-Barr positive Hodgkin's disease. Epstein-Barr Virus is a very common virus that cause mono, among other thing. In some people, like myself, it seems to cause lymphoma. This vaccine will hopefully teach my immune system to fight off the virus and thus help me ward off further recurrence.
As I was giving my medical history on this trip, I realized the long list of chemotherapy agents I've been given and I thought I'd recap it here...for your enjoyment?
My first regimen
ABVE-PC
Adriamycin (Aid-re-a-y-sin)
Bleomycin (blee-0-my-cin)
Vincristine (vin-chist-teen)
Etoposide (E-top-o-side)
Prednisone (pred-ne-zone)
Cyclophosphamide (sigh-clo-fos-fa-mide also call cytoxan)
Salvage Chemo
ICE
Ifosfamide (i-fos-fa-mide)
Carboplatin (car-bo-pla-tin)
Etoposide (e-top-o-side)
High Dose
BEAM
BCUN (also known as carmustine car-mus-teen)
Etopocide (e-top-o-side)
Ara-C (also called Cytarabine sigh-tare-a-been)
Melphalan (mel-fa-lan)
11 different agents in all
I think this qualifies me as a toxic waste site...
I am in the process of getting my life restarted. Much of early recovery was focused on getting physically back into some kind of shape. It's hard to get much done when you can't walk up the stairs without being tired. I also felt that post-transplant side effects were best avoided by putting myself in the best possible place physically. I think that to this aim I have largely succeeded. I am not in amazing shape but by comparison, I've come an amazing distance in the 130 some days since transplant. I've done alot of biking; almost 700 miles since I was released from the hospital. I've also done some hike and once the school year start I hope to add a light weight work to the cardio of my biking regimen. I guess that is the other big development. My graduate program, the Cincinnati-College Conservatory of Music, finally got there act together and decided my fate for next year. I'll be starting my master's this fall and am glad to be really getting a chance to move on. I think that moving across the country will force me to come to terms with the past 16 months much quicker then if I were to be staying here in Denver. I pretty much don't know a soul in Cincinnati, so it will be a clean start, to see if all this has actually taught me anything.
I have been doing a little bit of traveling of sorts. I took a little vacation to Breck/Aspen/Grand Junction which was not so much relaxing but very fun. I got to see some people that are very dear to me that have too long been absent from the scene. It was good to dip my toe into the stream of life and see that all this goes on, within and without me. I also made two stressful trips down to The Methodist Hospital in Houston to take part in a clinical trial to create a vaccine against Epstein-Barr positive Hodgkin's disease. Epstein-Barr Virus is a very common virus that cause mono, among other thing. In some people, like myself, it seems to cause lymphoma. This vaccine will hopefully teach my immune system to fight off the virus and thus help me ward off further recurrence.
As I was giving my medical history on this trip, I realized the long list of chemotherapy agents I've been given and I thought I'd recap it here...for your enjoyment?
My first regimen
ABVE-PC
Adriamycin (Aid-re-a-y-sin)
Bleomycin (blee-0-my-cin)
Vincristine (vin-chist-teen)
Etoposide (E-top-o-side)
Prednisone (pred-ne-zone)
Cyclophosphamide (sigh-clo-fos-fa-mide also call cytoxan)
Salvage Chemo
ICE
Ifosfamide (i-fos-fa-mide)
Carboplatin (car-bo-pla-tin)
Etoposide (e-top-o-side)
High Dose
BEAM
BCUN (also known as carmustine car-mus-teen)
Etopocide (e-top-o-side)
Ara-C (also called Cytarabine sigh-tare-a-been)
Melphalan (mel-fa-lan)
11 different agents in all
I think this qualifies me as a toxic waste site...
Sunday, July 8, 2007
Wednesday, July 4, 2007
No Evidence of Disease
And just like that the war was over...
Many of you know from my last blog, I went in on Monday to have my three month scans. This is the first in a series of many scans I will have to ensure that my Stem Cell transplant has secured me a remission. The PET showed four very bright spots which the tech that read my scans was confused about. "Too bright to be tumors, but too big to ignore." My doctor looked at the scans and laughed, the tech had forgotten that I have four metal stents in my chest from clot surgeries and these stents show up in the form of a metallic flash under CT scans. Other than my stents, my scans were totally clean, free from any "hot spots" or suspicious swelling. So at this point, I am said to be in remission from my Hodgkin's disease.
NED- No Evidence of disease
While remission is a HUGE step in the right direction.,it is important to note that remission is not the same as cured. In many ways one is never cured of cancer, remission means, simply, that at the present the disease is not detectable in the body. There is generally window of time in which a relapse into disease is more likely. For me, it is the next 36 months. The longer you are in remission the less likely you are to relapse so it is best to think of each remission inside this window as a stepping stone to the next. You can't get to a place were you are "cured" unless you pass across each stepping stone of the remission crucible. I am not trying to down play the results of this scan-they are a BIG DEAL, but I am simply aiming to put this big deal in the correct context. Without remission here, there can be no though of being disease free at my next scan in three month. The journey of many miles is undertaken a step at a time.
Remission is a license to dream about having normalcy again. It is the freedom to start looking for answers to the destruction of your former life. After 13 months of cancer there is not much left of my former edifice. I am 23, no job, no career, no wife, no children- it's like being liberated into a desert. There are no resources here, a journey must be made to find them, and right now I trying to decide which direction to start walking...
The war is over, let the reconstruction begin.
Many of you know from my last blog, I went in on Monday to have my three month scans. This is the first in a series of many scans I will have to ensure that my Stem Cell transplant has secured me a remission. The PET showed four very bright spots which the tech that read my scans was confused about. "Too bright to be tumors, but too big to ignore." My doctor looked at the scans and laughed, the tech had forgotten that I have four metal stents in my chest from clot surgeries and these stents show up in the form of a metallic flash under CT scans. Other than my stents, my scans were totally clean, free from any "hot spots" or suspicious swelling. So at this point, I am said to be in remission from my Hodgkin's disease.
NED- No Evidence of disease
While remission is a HUGE step in the right direction.,it is important to note that remission is not the same as cured. In many ways one is never cured of cancer, remission means, simply, that at the present the disease is not detectable in the body. There is generally window of time in which a relapse into disease is more likely. For me, it is the next 36 months. The longer you are in remission the less likely you are to relapse so it is best to think of each remission inside this window as a stepping stone to the next. You can't get to a place were you are "cured" unless you pass across each stepping stone of the remission crucible. I am not trying to down play the results of this scan-they are a BIG DEAL, but I am simply aiming to put this big deal in the correct context. Without remission here, there can be no though of being disease free at my next scan in three month. The journey of many miles is undertaken a step at a time.
Remission is a license to dream about having normalcy again. It is the freedom to start looking for answers to the destruction of your former life. After 13 months of cancer there is not much left of my former edifice. I am 23, no job, no career, no wife, no children- it's like being liberated into a desert. There are no resources here, a journey must be made to find them, and right now I trying to decide which direction to start walking...
The war is over, let the reconstruction begin.
Thursday, June 28, 2007
Scans on Monday!
I got the call from Children's this afternoon to set up my first set of post-SCT scans for Monday, July 2. I'll start with a PET and CT on Monday and if those are clean I'll get the Cardiac Stress Echo and yet other round of test for my lungs. All and all things continue to go well...I have a few rants and thoughts saved up (if you have been rude to a man in a blue mask, your day of judgement is fast approaching!). I should get some serious time next week to set them all down here. Until then, keep your fingers crossed! I could be declared cancer free as early as Monday afternoon!!!!!!!!
Wednesday, June 20, 2007
Day +70
It's been awhile since I have posted here, and to be honest that's a reflection of how well things are going at the moment. I find that I have used this blog as a vent, a place to work things out. My family has worked on the "no news is good news" premise and this blog seems to mirror that. Most of my future life at the moment hinges on whether or not my masters programs is willing to let me return in the fall. If so, I'll have to work hard to get in shape to return to conservatory level playing, find a place to live in Cincinnati, etc. If not, a whole group of options open up, too many options really. The whole "what should I do with my life" thing gets blowin' wide open. Whatever it is, I am pretty much starting over, which I am okay with, but some direction has to be found and it is hard to see through the chemo fallout. Time will tell...
Subscribe to:
Posts (Atom)