To have to write a book, hahaha, about that... however, I digress. Yeah, another maintenance infusion in November, and managed to get to "Grandmother's House" for Thanksgiving with no firm idea of how I would get back except I was sure I could get on the train when the time came... I really just knew it had been too long since I had seen my younger brother (one of these days I'll get down to see my youngEST brother) so I figured I would go there for a brief stay... found myself back in Gondor near the Mountain Dam where one week became two, and saw my 59th Birthday celebrated there. Well, if I couldn't stay for Christmas.... a delightful time was had, spent with young and old and middle, passing on the lore and the legend and the hopes of the future. Gathered gifts of connection and left behind...
Memories of good time spent being around for: the game, breakfast, church, rehab clinic party, old stories (a few new ones), a book, a movie, taking the time to put up ALL the decorations. Dad loves to play the Christmas Elf so we look like Tinsel Town, North Pole! Haha, and mom's Antique Village and Angel Collection and the Nativities (yes plural) on the mantle... glad I got pictures. Really takes it out if ya to put that all up. For the kids after all, sure, you know.
No regrets.
I had lunches with old friends, and made some new. I got to bond with my parents in a way that I know is not common amongst the general population. Does it mean that every thing got resolved? In a way, yes. Once the main thing is overcome all else is swept away in the cleansing flow. I don't mean that all family mysteries are solved, but the personal wounds are healed, and ones personal mysteries are unsealed. A close friend once told me he understood more when he could hear all his mothers words translate as "I love you." That's an ideal of course, but I know everything my mother did for me was in her love for me. Even her mistakes, more in her apologies, mostly her forgiveness.
I know more about me now and why some of those small things meant SO much. Still, trading quality time for physical necessities is a tough choice, I do remember those hours of play: the "airplane" rides, the toy helicopter... flying kites, "well, I gotta run, making a living to keep a roof over..." He did too, and managed to be an outstanding dad for all that. So thanks, Dad, for making those tough choices, even when we bitched, and doing the best you could with what you had. All in a days work ma'am, just doing my duty sir, that's my dad.
Time to slow down and take each moment as the nugget of gold that it is. Quality of life, yep doc, I did say it was the chief thing.
Wednesday, December 25, 2013
Tuesday, September 3, 2013
Realizing it's been a while... kinda like waking up
on the ground with no recollection how it came to be. No wait that was me the other saturday night. No, it weren't like that exactly. I was at home relaxing in the garden...
Day 70 since last blog entry; during that time many tests and consults (a few insults:I got my shots in too) ultimately learned plenty and chose to forego the stem cell harvest. I realized at this stage (pun alert) of the game there was no way I would choose a transplant. Nothing at all against anyone who is, has, or may be soon. Best of luck and prayer and whatever else you've got, like the doc told me, you're gonna need it. I'm about 45 days out from my first maintenance infusion of rituximab which had been combined with the bendamustine originally. I get those every 60 days for a year. Some uncomfortable side effects but not like "chemo."
Now there might have been some mention of the calcification that sometimes occurs with the rituximab, but you certainly don't notice that when the chemo is so obliterating of everything else.
Note that I did not publish this immediately and I have no idea how much time has elapsed since I began this entry. I could do the math but... I am 2 days away from my next infusion.
I notice that life has changed for me, there really is no going back. Even with surviving my recovery is slower than I thought myself capable. I need to give myself more time to do anything. For a 5 minute task I better schedule an hour, time to think it over and time to rest when done. Will I tackle anything else afterward? No way to know for sure, everything is different. "Different," I try to define that and it is amorphous defying definition. It is uncharted territory. How do I feel? How IS IT that I feel? So much has changed, more inwardly than outwardly, and I feel it ain't done yet.
Day 70 since last blog entry; during that time many tests and consults (a few insults:I got my shots in too) ultimately learned plenty and chose to forego the stem cell harvest. I realized at this stage (pun alert) of the game there was no way I would choose a transplant. Nothing at all against anyone who is, has, or may be soon. Best of luck and prayer and whatever else you've got, like the doc told me, you're gonna need it. I'm about 45 days out from my first maintenance infusion of rituximab which had been combined with the bendamustine originally. I get those every 60 days for a year. Some uncomfortable side effects but not like "chemo."
Now there might have been some mention of the calcification that sometimes occurs with the rituximab, but you certainly don't notice that when the chemo is so obliterating of everything else.
Note that I did not publish this immediately and I have no idea how much time has elapsed since I began this entry. I could do the math but... I am 2 days away from my next infusion.
I notice that life has changed for me, there really is no going back. Even with surviving my recovery is slower than I thought myself capable. I need to give myself more time to do anything. For a 5 minute task I better schedule an hour, time to think it over and time to rest when done. Will I tackle anything else afterward? No way to know for sure, everything is different. "Different," I try to define that and it is amorphous defying definition. It is uncharted territory. How do I feel? How IS IT that I feel? So much has changed, more inwardly than outwardly, and I feel it ain't done yet.
Tuesday, June 4, 2013
It's been quite a ride; is my 8 seconds up yet?
Apparently not quite. That is, I've been hanging on riding the bull, now I need to maintain my victory. It ain't even over when it's "over." The last 2 months have seen miracle after miracle, and though my recovery from the treatment has been plodding slow at times it is at least measurable. At least in my own mental assessment of measurement, that is: how far did I walk today, how fast and how was my breath rate and recovery for the walk home. Oh yes, you go there, rest, and go home. Two blocks both ways was about it for range. Shuffling along for speed, and don't make yourself pant, just mosey along and enjoy the journey.
Sometimes I forget and before I know I catch myself laboring and slow it way down. I used to be a pretty fast walker in my youth. It was the only means of getting anywhere, so you got a pace set and you went 5 miles or whatever to So&So's house. You hoped the person was home when you got there because we had no cell phones and very limited ways of communicating. Having a phone at home meant you had to be home to use the phone, and the length of the cord was the limit to your mobility while on the phone. Now we can walk while on the phone, or catch a bus while making a call, or shopping... These days a goodly number of my friends live more than 5 miles away. Walking 2 blocks to the market is a good time for me. Once a day and see how that goes. Baby steps, easy victories. Build your confidence, set your goals higher. Extend your reach without setting yourself up to fail.
I have said before that my primary occupation was feeding myself, that is, persuading myself to consume nutrients of some kind. My routine was structured around my morning sturgeon wrestling. Usually a workout consisting of 3-4 rounds over a roughly 4 hour period preceded by intestinal bloating and pains sometimes in the form of a sharp burn in the top of the stomach. (I referred once to these bouts on the toilet as "wrestling a sturgeon," and the phrase stuck). At times there was that reminder feeling, of that emotional edge of the empty pit feeling in your stomach, the words don't really convey the feeling of being trash clear to the core of your gut. Yeah, the ondanstron was great against the generally intense nausea, but nothing could really disguise the aftermath of the death in your inner being. A plague has struck that has wiped out the pestilence. The grim reaper sent as a healer. Indeed. Now the cleansing can be done, the fields tilled, the crops planted and the harvests brought in.
http://www.youtube.com/watch?v=iMQdXTzFxLM&feature=share&list=UUtne_KnvT-1sC9QgwH5xAwA
I realize that this link refers to CLL and not MCL still the 2 are in somewhat the same ballpark and I believe that he mentions mantle cell in there.
OK, now post this thing...
Sometimes I forget and before I know I catch myself laboring and slow it way down. I used to be a pretty fast walker in my youth. It was the only means of getting anywhere, so you got a pace set and you went 5 miles or whatever to So&So's house. You hoped the person was home when you got there because we had no cell phones and very limited ways of communicating. Having a phone at home meant you had to be home to use the phone, and the length of the cord was the limit to your mobility while on the phone. Now we can walk while on the phone, or catch a bus while making a call, or shopping... These days a goodly number of my friends live more than 5 miles away. Walking 2 blocks to the market is a good time for me. Once a day and see how that goes. Baby steps, easy victories. Build your confidence, set your goals higher. Extend your reach without setting yourself up to fail.
I have said before that my primary occupation was feeding myself, that is, persuading myself to consume nutrients of some kind. My routine was structured around my morning sturgeon wrestling. Usually a workout consisting of 3-4 rounds over a roughly 4 hour period preceded by intestinal bloating and pains sometimes in the form of a sharp burn in the top of the stomach. (I referred once to these bouts on the toilet as "wrestling a sturgeon," and the phrase stuck). At times there was that reminder feeling, of that emotional edge of the empty pit feeling in your stomach, the words don't really convey the feeling of being trash clear to the core of your gut. Yeah, the ondanstron was great against the generally intense nausea, but nothing could really disguise the aftermath of the death in your inner being. A plague has struck that has wiped out the pestilence. The grim reaper sent as a healer. Indeed. Now the cleansing can be done, the fields tilled, the crops planted and the harvests brought in.
http://www.youtube.com/watch?v=iMQdXTzFxLM&feature=share&list=UUtne_KnvT-1sC9QgwH5xAwA
I realize that this link refers to CLL and not MCL still the 2 are in somewhat the same ballpark and I believe that he mentions mantle cell in there.
OK, now post this thing...
Saturday, April 6, 2013
Or so they say in the CT report.
I think I was the 'gator, oh nevermind.
...can't remember what I may have been
writing about, I've had so many thoughts arrive and depart like a
time lapse movie of a busy airport. Yet, try as I might it became
impossible to display them in text.
Trying to take stock at times, a breath
and I search my self for a clue as to why I sometimes feel as though
I went into the room to look for something and forgot what it was.
Only... the thing is my 'life' we are talking about here. Yeah, I
remember what I was doing last year and all that, it ain't like
amnesia ALL the time. There are still the obstacles and the mountains
I have always been climbing, so to speak, yet my perspective is
changed. There are many things I want to finish and many things I
want to start, hmmmm a thing or 2 I have started that I want to
continue.... so that's life really anyway when you get down to it,
all the doing or taking the time off from doing that we dream of
spending our earthly time and life-force on doing. We are so wanton,
so arrogant as to be flagrant and abusive of our time here and then
it is gone, game over, “too soon.” Sometimes life seems like a
fight....
Why am I so tired, I say again, don't I
get enough rest? “How's the fatigue this time,” they said. It
goes to 11, don't that mean it's louder? I quip. Some of them got
it...
The kind Drs. have said that I am
winning. Or in their lingo, I am in “CR” remission. It is too
small to be detectable by scan. True, everything was shrinking or
returning to normal after the 4th infusion. Speaking now a
month out from #6, I think we have it under control at least. Now for
the bi-monthly Retuximab hormone infusions called maintenance, and
sometime in the next 80 days a stem cell harvest. I have stated that
I will submit to having my healthy bone-marrow stem cells harvested
and frozen against the day that it might become necessary or prudent
to use them.
Meanwhile....
Wednesday, February 13, 2013
Wow.
...and I am not known as a man of few words, except when only a few will do. I apologize for being so long in posting, it seems easy enough to do, however it is the thought to fingers part that gets in the way. This last was not an "easy" infusion. Oh, did I give the impression somehow that the whole thing was a Sunday afternoon ice cream? Most people know that is not true, I have been tolerating it well. My Drs. are pleased at the results so far, that does not mean it's been fun, even if I make jokes at my own expense I consider it well spent to lube the rails. I have had my bouts of emotional roller-coaster tornado upheaval, but you can't live there, and this is about living. So yeah, I have had my ass kicked, I beat the onset of a cold that tried to become pneumonia, and I couldn't place bets on my immune system right now. On the other hand I am not sure anything else could live in my body, it is feeling a bit toxic.
Wow is the only way I could describe this week since last Wednesday. I could feel it coming on even late that night, the shell shock apprehension was still emanating from the rush earlier that day. Thursday's bag of juice was more routine (and confident), but the damage that would be had been done (though compounding was now minimized). It is my theory (and I claim no medical qualifications), that the ratio of chemo to blood volume helps determine how it impacts your body. This is why they often (usually) infuse with diluting agents like glucose or saline water depending on the compatible chemistry of the drug. It does come out of your pores, and your tears, and everything else. Well, I found I was very thirsty the next day and I was drinking coconut water, and herb tea, and yes, even water... I am so tired now; yesterday I had 3 little sausages and instant oatmeal, and a chocolate chip cookie (homemade from scratch thanks Ani), today I have sauage and egg Aunt Jemima breakfast, yeah I know but I can run the micro wave without too much but sometimes cooking is just too exhausting. "You mean then I have to eat it too?" Sorry, fatigue sets in, going to bed. Maybe I'll reheat it later. If I'm interested.
Yeah, it feels like my guts hate me. "What the hell have you done? they scream. Breathe, and sigh that, let it out, like just running around the block and getting socked in the plexus... only you haven't moved. The daily fight where you need not lift your arms or punch the bag, or jump the rope or run on the beach and you're tired as hell but you really can't sleep right now, not now, not again...
I did write a song a couple of weeks ago called "Seattle Air" and I hope I can get it recorded sometime...
Wow is the only way I could describe this week since last Wednesday. I could feel it coming on even late that night, the shell shock apprehension was still emanating from the rush earlier that day. Thursday's bag of juice was more routine (and confident), but the damage that would be had been done (though compounding was now minimized). It is my theory (and I claim no medical qualifications), that the ratio of chemo to blood volume helps determine how it impacts your body. This is why they often (usually) infuse with diluting agents like glucose or saline water depending on the compatible chemistry of the drug. It does come out of your pores, and your tears, and everything else. Well, I found I was very thirsty the next day and I was drinking coconut water, and herb tea, and yes, even water... I am so tired now; yesterday I had 3 little sausages and instant oatmeal, and a chocolate chip cookie (homemade from scratch thanks Ani), today I have sauage and egg Aunt Jemima breakfast, yeah I know but I can run the micro wave without too much but sometimes cooking is just too exhausting. "You mean then I have to eat it too?" Sorry, fatigue sets in, going to bed. Maybe I'll reheat it later. If I'm interested.
Yeah, it feels like my guts hate me. "What the hell have you done? they scream. Breathe, and sigh that, let it out, like just running around the block and getting socked in the plexus... only you haven't moved. The daily fight where you need not lift your arms or punch the bag, or jump the rope or run on the beach and you're tired as hell but you really can't sleep right now, not now, not again...
I did write a song a couple of weeks ago called "Seattle Air" and I hope I can get it recorded sometime...
Monday, January 28, 2013
... visualize world peace... visualize whirled peas... visualize Ballard...
Visualize food making me feel better.
I have always loved food, no doubt there... getting it into me seems to be the daily task at hand. It is as though I have to be very intentional about what I eat. That means I can "treat" my self to a comfort food, like mac n' cheese, or ice cream if I can justify it with having coupled that with some nutritional quotient. Protein, veggies, fruit juices; pancakes, sour dough bread and english muffins get in there too, mainly as an appetizer (to get the stomach ready to feel like eating), and to hold other things together. I have over the years reduced my gluten intake considerably and have not to my knowledge been intolerant. However, even though the docs say "eat anything, just don't lose weight (paraphrased)" I take that to mean good weight, I don't aim to pack around empty pounds just too satisfy a scale. Last year at this time I had a workout partner and we were going to the gym for 2 hours a day 4 times a week and enjoying the sauna/steam room which is good for your lungs and really helps in the winter months with cold and flu prevention. I really did not want to continue going over 213 as I had always had a somewhat slight frame and trying to hold a guitar with a beer belly ain't my cuppa tea. I had my self getting to a strapping 185, and starting to shape myself the way I never could before. I was feeling good despite anything else and getting stronger. Then they asked me if I had been losing weight lately.... well yeah, but I was TRYING to. Good thing you are strong they said and were working out they said "you're gonna need that."
Now some have had the idea perhaps that this is about fighting the cancer. Not exactly... in fact the chemo is doing that because my body was losing the war. Very likely the mutation had been held at bay to some extent (while it spread all over), until my immune system had to fight too many virus's while aging, amid the stress of other survival factors which many people are facing or in the middle of currently. The body often does not recognize an antibody in the lymphatic system as being a threat, usually it is not. Hence the body does not "go after" them when they just lay around doing nothing. The mutation is that they do not develop to full function, so they do not know what to do (eliminate disease), but they are equipped to reproduce. This is what makes the tumor: healthy but dysfunctional cells that do nothing while consuming and reproducing. Someone quipped that, "oh, you have teenagers."
I have always loved food, no doubt there... getting it into me seems to be the daily task at hand. It is as though I have to be very intentional about what I eat. That means I can "treat" my self to a comfort food, like mac n' cheese, or ice cream if I can justify it with having coupled that with some nutritional quotient. Protein, veggies, fruit juices; pancakes, sour dough bread and english muffins get in there too, mainly as an appetizer (to get the stomach ready to feel like eating), and to hold other things together. I have over the years reduced my gluten intake considerably and have not to my knowledge been intolerant. However, even though the docs say "eat anything, just don't lose weight (paraphrased)" I take that to mean good weight, I don't aim to pack around empty pounds just too satisfy a scale. Last year at this time I had a workout partner and we were going to the gym for 2 hours a day 4 times a week and enjoying the sauna/steam room which is good for your lungs and really helps in the winter months with cold and flu prevention. I really did not want to continue going over 213 as I had always had a somewhat slight frame and trying to hold a guitar with a beer belly ain't my cuppa tea. I had my self getting to a strapping 185, and starting to shape myself the way I never could before. I was feeling good despite anything else and getting stronger. Then they asked me if I had been losing weight lately.... well yeah, but I was TRYING to. Good thing you are strong they said and were working out they said "you're gonna need that."
Now some have had the idea perhaps that this is about fighting the cancer. Not exactly... in fact the chemo is doing that because my body was losing the war. Very likely the mutation had been held at bay to some extent (while it spread all over), until my immune system had to fight too many virus's while aging, amid the stress of other survival factors which many people are facing or in the middle of currently. The body often does not recognize an antibody in the lymphatic system as being a threat, usually it is not. Hence the body does not "go after" them when they just lay around doing nothing. The mutation is that they do not develop to full function, so they do not know what to do (eliminate disease), but they are equipped to reproduce. This is what makes the tumor: healthy but dysfunctional cells that do nothing while consuming and reproducing. Someone quipped that, "oh, you have teenagers."
Monday, January 7, 2013
Oooooops, there goes another thought like a roman...
candle spinning out of control or one of those little wigglers that shoot off in clusters of tail-spins curling into the smoky night... which I said to my friend the other night in mid-sentence as I literally watched the thought disappear like disappearing ink or the picture of Marty in Back to the Future only there's no way to grab it as it flutters off the Eiffel Tower like a $100 bill suddenly and irretrievably leaves your grasp in a sigh like the impulse of a shadow of a feeling of a dream... when you regain consciousness and the dream state is an illusion about a desire to make a point about whatever it was you were discussing a moment ago as if it made any difference at all being of absolutely no consequence even if I could think of it.
Yeah, I had a tough time last week, and then I was offline for a few days over New Year... and the previous page did not turn out as I expected, and my attention is now here in the future where it belongs. I tried focusing on the present but I couldn't keep up, if I can't smell it coming the present is past before you knew it was here. Life goes by fast enough already, and sometimes it is just still as a pond in the summer, except for the constant buzzing of the June flies in the background.
Usually Dr. Eddie gets to see me when I am getting back up again, and of course that's the point- if I were not recovering or maintaining vitality it would indicate a problem. My nutripines (?) and other blood numbers are good I hear so it seems to be working, and the tumor that tried to kill me is receding, but another CT scan and they'll have another picture and then some more infusing... I get to have some laughs with him and that is a great thing to me, I dig it.
I had breakfast at 2pm today because I finally got myself over to the cafe and this time I had it in my head cos I know the menu, and they have a 222 which is 2 pancakes eggs, bacon... coffee, cream. So I start reading the menu and it all sounds good but I know I can't get a breakfast steak down, nahhh, better just get the 222, besides the clock on the microwave said 2:22 when I left. How Prophetic? I didn't get a picture, sorry, it was too dark, and it took me about a hour to get it down. The Seahawks were playing the Redskins on tv (why the bar was full and I was the only diner) and by the 3rd quarter the Seahawks were winning but it seemed like the people were cheering when I would take a bite. Quite an encouraging hallucination. The flavor is fine, and food is good, but there seems to be other obstacles to eating. Cooking is one; I have always loved to cook, however in some ways it is failing me now. Sometimes I lose interest by the time I have finished the process, am feeling fatigued, and have probably botched the simplest of recipes. Lucky if I don't burn my grilled cheese on both sides, or explode my instant whole grain oatmeal in the microwave (fun mess).
Still, we survived the Holidays and now that some semblance of stability has returned to Squeaky Hollow I can't help but notice that my world seems to have ...
Yeah, I had a tough time last week, and then I was offline for a few days over New Year... and the previous page did not turn out as I expected, and my attention is now here in the future where it belongs. I tried focusing on the present but I couldn't keep up, if I can't smell it coming the present is past before you knew it was here. Life goes by fast enough already, and sometimes it is just still as a pond in the summer, except for the constant buzzing of the June flies in the background.
Usually Dr. Eddie gets to see me when I am getting back up again, and of course that's the point- if I were not recovering or maintaining vitality it would indicate a problem. My nutripines (?) and other blood numbers are good I hear so it seems to be working, and the tumor that tried to kill me is receding, but another CT scan and they'll have another picture and then some more infusing... I get to have some laughs with him and that is a great thing to me, I dig it.
I had breakfast at 2pm today because I finally got myself over to the cafe and this time I had it in my head cos I know the menu, and they have a 222 which is 2 pancakes eggs, bacon... coffee, cream. So I start reading the menu and it all sounds good but I know I can't get a breakfast steak down, nahhh, better just get the 222, besides the clock on the microwave said 2:22 when I left. How Prophetic? I didn't get a picture, sorry, it was too dark, and it took me about a hour to get it down. The Seahawks were playing the Redskins on tv (why the bar was full and I was the only diner) and by the 3rd quarter the Seahawks were winning but it seemed like the people were cheering when I would take a bite. Quite an encouraging hallucination. The flavor is fine, and food is good, but there seems to be other obstacles to eating. Cooking is one; I have always loved to cook, however in some ways it is failing me now. Sometimes I lose interest by the time I have finished the process, am feeling fatigued, and have probably botched the simplest of recipes. Lucky if I don't burn my grilled cheese on both sides, or explode my instant whole grain oatmeal in the microwave (fun mess).
Still, we survived the Holidays and now that some semblance of stability has returned to Squeaky Hollow I can't help but notice that my world seems to have ...
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