Counts, counts, what are my counts?
WBC: 2.1
RBC 3.15
Hemoglobin: 12.3
Platelet: 65
Does that help you?
It doesn't help me, I feel great. Address the patient, not the numbers, yeah?
Well, I feel fantastic. Almost back to normal, but then, who defines 'normal'? Was I ever normal? And aren't the levels in my blood only relevant for those in my same situation; How many of us are to compare?
It doesn't matter, that's what I'm saying here. What matter's most of all is my mental health and overall happiness. I can claim to have both, but some of you may disagree with the former. To me, that just means your opinion of me has not changed at all, and I wouldn't have it any other way.
What I've got ahead of me is my new birthday - April 28. The day before I am to go into the DCAM and get another bone marrow biopsy, where we wish for what? That's right, NED is what we wish for. No Evidence of Disease. And I've got a pulmonary test, the one where I'm in a box and get yelled at to "BLOW" and try to exert off my lung power while sitting on an ice cold ledge made of metal. I am going to have to find some way to make that fun. the fun right now is surviving, isn't it?
This spring has opened up new opportunities and I'm making no small plans. I'm actually making moves to get out of the albatross of a house and try to move on with other aspects of living, some thing you all overlook ,some I have overlooked for too long. I'm still trying to improve on a daily basis, and look forward to more warm days in which I can get a little exercise and increase my lung power, so I can increase the amount of blood flowing, if my blood refuses to hold any more oxygen. I'll just move more blood!
And while this summer may not hold Chickenfest, it surely will have a lineupoflosers and I will do my damnedest to try and win some free tickets or something! I'd like to get back to full-time rocking out. I've noticed that beer doesn't affect e quite the way it used to, so I can get away on the cheap this year. I still love beer, oh hell, yeah, it is just that I have the tolerance of a high school girl, and cheap beer just plain tastes bad to me these days. I've learned to refine my ordering and enjoy the one or two cocktails of fine spirits when I go out and just leave it at that. It's a damn, shame, I know, but I can at least enjoy the tastes of things better and there's many positives in that.
If any of you want to take a bike ride over to Wrigley this spring, we can hang out and wait for home run balls on the street; bring your mitt! I'm waiting for a day over 60 myself. I found myself in front of the park this week, and while very tempted to go in, I had to pass due to the chilly weather. Cheap tickets or not, hell free, even, I cannot risk the chance of catching cold while sitting in 45 degree temps with a 20mph wind in my face. That's not fun unless you can brace against the wind with a pint in the pocket and well, I think I just discussed that! Now, if any of you have a seat in your suite that you would like to offer me, well, I can do that. I could even bring some extra tasty snacks.
I'm deliberately not talking about going back to work because of a current jam I'm in and soon hope to find a solution. I will elaborate when I've hurdled this obstacle.
Get outside and have fun, play frisbee, get half-naked on your lawn, just revel in the weather and ability of the humanity of the smile. Especially a child's! I miss those snot-nosed little buggers when I not allowed to be around them. Good thing my kid is a dog. And really, she's old enough to hang out, I think.
Them is your orders! Make a child smile today!
Peace to you all,
Mark
Thursday, April 21, 2011
Saturday, April 2, 2011
Guest Post! - Tim Elliot
Ladies and Gentlemens, I give to you today a guest blog post; Please meet Tim:
Timothy Elliot
creative4lyfe@gmail.com
The Immediate Danger Of Aggressive Cancers
Cancer can manifest in a multitude of ways, not only in terms of where it is located and what type of tissue it spreads to and attacks, but also in terms of the way that it can unfold as a disease. Certain cancers will proceed remarkably slowly, while others can aggressively spread through-out the body almost immediately. Although scientists are unsure exactly why certain cancers can react aggressively while others are far more passive, but a genetic mutation of a protein called MAD2 might be a key part of the explanation. Because when the protein MAD2 is missing entire chromosomes can become unstable scientists’ believe the strong correlation between its absence and the chromosomal instability found in aggressive cancer cells. The MAD2 protein may be a key component in understanding how to stop some of the deadliest, most aggressive cancers, including breast cancer, colon cancer, T- cell prolymphocytic leukemia, and mesothelioma.
Breast cancer, which is diagnosed in over 207,000 new patients every year, is estimated to be responsible for a staggering 39,840 deaths a year. Because breast cancer is such an aggressive cancer, only about one-fourth of the diagnoses each year are able to be operated on while the tumor is in its earlier stage, which is particularly shocking given the widespread awareness of breast cancer. Fortunately, although breast cancer is an extremely aggressive cancer, there are often still several treatments available for patients- usually including surgery.
Colon cancer is likewise one of the leading causes of cancer-related death in the United States. However because almost all colon cancers begin as benign, noncancerous polyps, colon cancer, if caught early enough, can be treated completely. Unfortunately, colon cancer spreads quickly through-out the body and in many cases can have no symptoms. The most common symptoms of colon cancer, however, are abdominal pain, intestinal obstruction, unexplained weight loss, and blood in the stool.
Unlike breast cancer and colon cancer, T-cell prolymphocytic leukemia is a very rare form of cancer that occurs in only about two percent of all lymphocytic leukemia patients. However, because T-PLL is both extremely aggressive and resistant to chemotherapy it is among the deadliest of all cancers. T-PLL’s aggressive metastasis through-out the body causes the average T-PLL lifespan to be about seven and a half months. However, new treatments with monoclonal antibodies and the research into MAD2 are expected to be far more effective in treating it.
Like T-PLL, mesothelioma is far rarer than breast cancer and colon cancer, however mesothelioma is unique among the extremely aggressive cancers in that it has a latency of period of 20-50 years before it begins to aggressively expand through-out the body. However because tumor often goes undetected until the cancer has metastasized, the mesothelioma life expectancy is only about a year after diagnosis.
Patients diagnosed with these four deadly , aggressive cancers figure to be among the first to benefit from the new research that is being done on the role of the MAD2 protein in cancer. As we understand more and more about cancer, hopefully we will continue to find better ways to fight it as well.
Timothy Elliot
creative4lyfe@gmail.com
The Immediate Danger Of Aggressive Cancers
Cancer can manifest in a multitude of ways, not only in terms of where it is located and what type of tissue it spreads to and attacks, but also in terms of the way that it can unfold as a disease. Certain cancers will proceed remarkably slowly, while others can aggressively spread through-out the body almost immediately. Although scientists are unsure exactly why certain cancers can react aggressively while others are far more passive, but a genetic mutation of a protein called MAD2 might be a key part of the explanation. Because when the protein MAD2 is missing entire chromosomes can become unstable scientists’ believe the strong correlation between its absence and the chromosomal instability found in aggressive cancer cells. The MAD2 protein may be a key component in understanding how to stop some of the deadliest, most aggressive cancers, including breast cancer, colon cancer, T- cell prolymphocytic leukemia, and mesothelioma.
Breast cancer, which is diagnosed in over 207,000 new patients every year, is estimated to be responsible for a staggering 39,840 deaths a year. Because breast cancer is such an aggressive cancer, only about one-fourth of the diagnoses each year are able to be operated on while the tumor is in its earlier stage, which is particularly shocking given the widespread awareness of breast cancer. Fortunately, although breast cancer is an extremely aggressive cancer, there are often still several treatments available for patients- usually including surgery.
Colon cancer is likewise one of the leading causes of cancer-related death in the United States. However because almost all colon cancers begin as benign, noncancerous polyps, colon cancer, if caught early enough, can be treated completely. Unfortunately, colon cancer spreads quickly through-out the body and in many cases can have no symptoms. The most common symptoms of colon cancer, however, are abdominal pain, intestinal obstruction, unexplained weight loss, and blood in the stool.
Unlike breast cancer and colon cancer, T-cell prolymphocytic leukemia is a very rare form of cancer that occurs in only about two percent of all lymphocytic leukemia patients. However, because T-PLL is both extremely aggressive and resistant to chemotherapy it is among the deadliest of all cancers. T-PLL’s aggressive metastasis through-out the body causes the average T-PLL lifespan to be about seven and a half months. However, new treatments with monoclonal antibodies and the research into MAD2 are expected to be far more effective in treating it.
Like T-PLL, mesothelioma is far rarer than breast cancer and colon cancer, however mesothelioma is unique among the extremely aggressive cancers in that it has a latency of period of 20-50 years before it begins to aggressively expand through-out the body. However because tumor often goes undetected until the cancer has metastasized, the mesothelioma life expectancy is only about a year after diagnosis.
Patients diagnosed with these four deadly , aggressive cancers figure to be among the first to benefit from the new research that is being done on the role of the MAD2 protein in cancer. As we understand more and more about cancer, hopefully we will continue to find better ways to fight it as well.
Thursday, March 31, 2011
Oh, how I love April Fool's Day!
And how I love opening day!
Hi, all of you all. I hope that spring has found you with a lightness to your steps, some planning for your yard projects and the hope that your baseball team has a chance this year to win it all! Here in Chicago, we've got two real good chances, the way I see the season unfolding, but like all the other prognosticators out there, I don't know beans about what will happen over the season. So we can take this moment and wish each other the best wishes for a great turnout this year.
Remember last year as I made it to opening day on the Southside? What a great surpirse that was. What an exhilarating feeling just to take a part in the season opener and see the "play of the year" on the first day, live and in person. Magical moment, that was. 75 degree day for an opener was magic as well.
This year, while I have the energy and time to go to the Cubs opener, I just don't have the funds. Or the foolhardiness to bear the cold weather temps and rain to risk grabbing a cold and turning it into another run at pnuemonia.
Opening day has a lot of meaning. The promise of spring, the return of my second love, baseball, for another season of fun and excitement, the joy of summer peeking from around the corner! All of these thing are represented by opening day. Oh boy, and just to share that same day with April Fool's day, well, that is the "OLD" New year's day, yes? The day all of those with the "NEW" Christian calendar calling the pagans fools for celebrating the upcoming planting season and new life on a non-christian day. Oh, how foolish we love to be though!
Have you ever played a really good April Fool's prank? Oh how I've longed to play a super good prank on some one, but I give them away too freely. I've always wanted to put the saran wrap on a few toilets, and Wrigley would be a perfect place to play such a trick, except I would probably never get to see the outcome. If any of you are going to the ballpark tomorrow, I implore you to try such a prank. And take pictures of the unhappy clowns exiting the bathroom! Perhaps that prank is a little too mean, yes? More than likely my own pranks will involve much lower mean levels, and more just plain tomfoolery. Like mixing salt and sugar, or putting a banana in a tailpipe.
What ever you do on the true first day of spring, just have fun, give yourself up to new hope, fall in love with baseball again, or just fall in love.
The world really is a lovely place. Sometimes we need a day like tomorrow to remind us of that fact.
P.S. - just so as not to confuse everyone with April Fool's ideas and what not, There will be a guest blog posted (for real guest blog, not an April Fool's joke)
after this one. Maybe it will make you forget all of the bad ideas I've given you!
Hi, all of you all. I hope that spring has found you with a lightness to your steps, some planning for your yard projects and the hope that your baseball team has a chance this year to win it all! Here in Chicago, we've got two real good chances, the way I see the season unfolding, but like all the other prognosticators out there, I don't know beans about what will happen over the season. So we can take this moment and wish each other the best wishes for a great turnout this year.
Remember last year as I made it to opening day on the Southside? What a great surpirse that was. What an exhilarating feeling just to take a part in the season opener and see the "play of the year" on the first day, live and in person. Magical moment, that was. 75 degree day for an opener was magic as well.
This year, while I have the energy and time to go to the Cubs opener, I just don't have the funds. Or the foolhardiness to bear the cold weather temps and rain to risk grabbing a cold and turning it into another run at pnuemonia.
Opening day has a lot of meaning. The promise of spring, the return of my second love, baseball, for another season of fun and excitement, the joy of summer peeking from around the corner! All of these thing are represented by opening day. Oh boy, and just to share that same day with April Fool's day, well, that is the "OLD" New year's day, yes? The day all of those with the "NEW" Christian calendar calling the pagans fools for celebrating the upcoming planting season and new life on a non-christian day. Oh, how foolish we love to be though!
Have you ever played a really good April Fool's prank? Oh how I've longed to play a super good prank on some one, but I give them away too freely. I've always wanted to put the saran wrap on a few toilets, and Wrigley would be a perfect place to play such a trick, except I would probably never get to see the outcome. If any of you are going to the ballpark tomorrow, I implore you to try such a prank. And take pictures of the unhappy clowns exiting the bathroom! Perhaps that prank is a little too mean, yes? More than likely my own pranks will involve much lower mean levels, and more just plain tomfoolery. Like mixing salt and sugar, or putting a banana in a tailpipe.
What ever you do on the true first day of spring, just have fun, give yourself up to new hope, fall in love with baseball again, or just fall in love.
The world really is a lovely place. Sometimes we need a day like tomorrow to remind us of that fact.
P.S. - just so as not to confuse everyone with April Fool's ideas and what not, There will be a guest blog posted (for real guest blog, not an April Fool's joke)
after this one. Maybe it will make you forget all of the bad ideas I've given you!
Monday, March 21, 2011
Saturday, March 19, 2011
culver city
I've tried several times to update and post from my vacation spot here in L.A. Sometimes it does work as expected. I've attempts to send photos many times but keep getting errors. What I meant to send was a picture from my lunch view on Venice Beach, a cloudless sky behind palm trees and Culver City signage and a picture of some of the wonderful food I have been ingesting.
Today, during an all-out rainstorm, we ventured to Quality Seafood where we polished off three dozen oysters and had many laughs as the Californians scattered for cover. It seems as though they treat rain as we Chicagoans would treat snow and ice, only we drive better.
Today, during an all-out rainstorm, we ventured to Quality Seafood where we polished off three dozen oysters and had many laughs as the Californians scattered for cover. It seems as though they treat rain as we Chicagoans would treat snow and ice, only we drive better.
Thursday, March 17, 2011
travel was fine.
The trip went fine. I thought I might have had an extra seat but, no, I was left near the window and able to read most of the way out.
I arrived with no issue and soon enough was at Talon's house and grabbed a cocktail with nighttime laughter and story-telling. It took a long time to wind down after all the anticipation of arrival.
The weather today, is quite nice, much like anwarm spring day would feel I suppose. I still felt the need to wears jacket to lunch where I had two kinds of fries and the ubiquitous to calfornia turkey burger. Here's to living a healthy fat full life!!
More later, muchachoes!
I arrived with no issue and soon enough was at Talon's house and grabbed a cocktail with nighttime laughter and story-telling. It took a long time to wind down after all the anticipation of arrival.
The weather today, is quite nice, much like anwarm spring day would feel I suppose. I still felt the need to wears jacket to lunch where I had two kinds of fries and the ubiquitous to calfornia turkey burger. Here's to living a healthy fat full life!!
More later, muchachoes!
Wednesday, March 16, 2011
Getting prepped for the LA
So here I am trying on the short pants. I may not need them.
I dont want to blind any astronauts with these pasty sticks.
Tuesday, March 15, 2011
Friday, March 4, 2011
Just an update. Nothing new to report!
The only to report at this time is a wonderful time on staycation.
I've been hanging around, drawing and strumming the guitar. I've taken the dog for long walks and enjoyed sleeping late. Slowly I've been doing projects around the house that have been in the cobwebs of my mind and preparing myself to work harder to get this beast on the market and sold, thereby freeing me up even more than I am now. Certainly, my future is wide open from here, as I feel like a brand new man, with great energy and fresh ideas. to quote Ministry: "I found myself in love with the world", a feeling I hope never dies. I'd like to start doing even more things for myself, and become an better individual every day. I feel that I am well on my way to shiny things, and everybody loves shiny things, don't we?
That is all for now.
Thank you all for your support while times were hard, and for all the smiles and warm receptions as I healed and got better. I am humbled through all of your showers of love. I'm trying to live up to the love I have received. It's quite a lot!
I've been hanging around, drawing and strumming the guitar. I've taken the dog for long walks and enjoyed sleeping late. Slowly I've been doing projects around the house that have been in the cobwebs of my mind and preparing myself to work harder to get this beast on the market and sold, thereby freeing me up even more than I am now. Certainly, my future is wide open from here, as I feel like a brand new man, with great energy and fresh ideas. to quote Ministry: "I found myself in love with the world", a feeling I hope never dies. I'd like to start doing even more things for myself, and become an better individual every day. I feel that I am well on my way to shiny things, and everybody loves shiny things, don't we?
That is all for now.
Thank you all for your support while times were hard, and for all the smiles and warm receptions as I healed and got better. I am humbled through all of your showers of love. I'm trying to live up to the love I have received. It's quite a lot!
Wednesday, February 9, 2011
I can't sit still!
I am so giddy at this moment that I'm having a hard time sitting still long enough to type. I know, it has been a while since I've posted. The delay was caused by a deep Chicago winter. Nothing more, nothing less. A week after my last post I had a bone marrow biopsy in it's routine place, the next one will be in three months or so. I was to get back results from this biopsy last Wednesday, the 2nd. Except the clinic was closed due to some 20+ inches of snow. Which forced the doctors to delay my appointment one week until today.
Are you putting this together yet?
My blood counts are still "pudgy". (Doc's word, not mine)
WBC: 1.8
Hemogolobin: 10.4
Platelets: 77
For me that's not pudgy, that's damn near normal! Save the WBC, that is. Either way, my counts continue their slow climb from the forced zeros of last April. As for how I feel, well, I feel great. I even managed to get some cross-country skiing in, an exercise I was concerned about because of it's great aerobic activity. I was gassed pretty good a couple of times for sure, but I still had a good time, and wasn't completely wiped out. I'm not saying I didn't "wipe out", because I did do that three times. All part of skiing. No yard sales, though.
The blood counts are not the source of my giddiness however.
The overjoy stems from the doctor informing me that I may travel, return to work and do just about everything I wish to. WHoo Hoo!!!!! I still have to avoid sick folk and children, but I can get back into a normal life instead of this weird lifestyle of hermitage and sun avoidance. A little bit of travel, then it's back to work!! I'm very excited and revved up like real-life Hot Wheels® car. My skin may just split from trying to contain this energy! How about another exclamation mark?!?!
Plus, Plus, Plus!
I don't have to return to the clinic for two months. Two Months!!! That's a summer vacation to me. After every week for as far back as I can think right now, two months seems an eternity. An eternity of hoots and hollers!!!
I would be remiss if I didn't take a moment here to thank all of you for your support and friendship, especially Jaymce and the baker. Without your assistance, I still wouldn't be talking, typing or even breathing. I thank you all with my whole heart and being.
Oh my goodness, where do I go and what do I do next?
The world is my oyster and I plan on slurping it up with great gusto.
Somebody get this man a Schlitz!
Are you putting this together yet?
My blood counts are still "pudgy". (Doc's word, not mine)
WBC: 1.8
Hemogolobin: 10.4
Platelets: 77
For me that's not pudgy, that's damn near normal! Save the WBC, that is. Either way, my counts continue their slow climb from the forced zeros of last April. As for how I feel, well, I feel great. I even managed to get some cross-country skiing in, an exercise I was concerned about because of it's great aerobic activity. I was gassed pretty good a couple of times for sure, but I still had a good time, and wasn't completely wiped out. I'm not saying I didn't "wipe out", because I did do that three times. All part of skiing. No yard sales, though.
The blood counts are not the source of my giddiness however.
The overjoy stems from the doctor informing me that I may travel, return to work and do just about everything I wish to. WHoo Hoo!!!!! I still have to avoid sick folk and children, but I can get back into a normal life instead of this weird lifestyle of hermitage and sun avoidance. A little bit of travel, then it's back to work!! I'm very excited and revved up like real-life Hot Wheels® car. My skin may just split from trying to contain this energy! How about another exclamation mark?!?!
Plus, Plus, Plus!
I don't have to return to the clinic for two months. Two Months!!! That's a summer vacation to me. After every week for as far back as I can think right now, two months seems an eternity. An eternity of hoots and hollers!!!
I would be remiss if I didn't take a moment here to thank all of you for your support and friendship, especially Jaymce and the baker. Without your assistance, I still wouldn't be talking, typing or even breathing. I thank you all with my whole heart and being.
Oh my goodness, where do I go and what do I do next?
The world is my oyster and I plan on slurping it up with great gusto.
Somebody get this man a Schlitz!
Friday, January 14, 2011
A Milestone of sorts.
Today marks the end of one year.
One year after I took one too many steps towards the edge of life, one too many away from the oxygen I was being given and one too short to reach a nurse.
I am going to use today to reaffirm my own strength, the benefit of great doctors and nurses and the value of being loved and loving right back.
It seems strange going through this reminiscence without Leslie nearby, as she was the voice for me when I couldn't communicate and the pipeline through whom I received all of your messages of support, love and concern. Although I am currently cancer free now, I can see that my life will always be affected by the nasty disease that took me into a brief death last year, early in the morning on January 15th. This disease has changed the pattern of life that I knew, changed my direction, changed my outlook, and changed nearly everything I thought I knew.
I thought I knew what death was and I was, perhaps, frightened a bit. My experience showed me that there's nothing to worry about, and, as I experienced (or just plain old dreamed up some scenario) that it wasn't my time to go, nor was I anywhere close to my time. So I came back for my things, my friends, my family and for my love.
Take a moment to think about what you thought you knew and throw it out. Just realize that all we have is our connection to each other, our shared experiences and nothing else. The rest of the things that occupy our lives, the TV, the sports, the food, the cars, computers, all the STUFF, don't matter at all. The only thing that matters is our feelings for one another and the time we can spend while we have it. together. When it is gone, this time thing, it's gone. Repairs cannot be made at the rest stop down the road, for all of our roads don't neccesarily follow the same route. Take care in those that matter to you and leave those that don't outside of your mind and hearts.
My heart is currently working pretty well and my blood levels are cooperating with keeping me out of the hospital and away from new blood transfusions. I'm trying to get an approval from the good doctor to return me to work. Think of that; I might just return to work soon! Of course, last fall I kept hearing, "Maybe next month" from my doctor's mouth, so I'm leery of feeling too good about what might happen and I'm trying to concentrate on what is happening. And what is happening is I'm feeling really good. I'm getting sustained good moods, high levels of activity and I can think fairly well without the dreaded 'cancer-brain' swiss cheese effect. Which makes me as good as the average employee. Of course, I fear for an illness setting in and sending me back to the hospital. I have fear about chemicals and fears about hanging out near people that may or may not be sick, I can't tell. Is that a runny nose from the cold weather or a runny nose from a cold? Did they wash their hands? Before or after they shook my hand? Purell never looked so good to me. While I wait for the doctor to give me the 'okay' and while I debate over the next step in my upside-down life, I'm concentrating on making my home neater, brighter and better. This big house is going back on the market in March, as I believe I will be able to handle the weekly showings and the general upkeep that will be needed to keep the curb appeal high. I can also watch the football playoffs with interest because our beloved Bears are involved. And that means there will be group parties with the food, laughter and fun that come along with spending Sunday afternoon with your best peeps...
Now let me tell you, this is not an anniversary to be celebrated, this year after death, no, no, not at all. I could have easily have failed in my attempts to stay alive and not be here writing to you as I am. The true anniversary to be celebrated is the one on which I received my sister Jeanne's stem cells and started life with an entirely new blood system, one that is still in 'baby' mode. (Heck, I've not even gotten a measles or polio shot yet!) That is the day the medical team calls "Day Zero", and my new birthday! Whoo-Hoo, another birthday for me! I don't deserve two, but then, Guy Fiero doesn't deserve to filmed while wielding a knife. So I get two now! This April 27th will mark my new birthday, Year One. I'm thinking a baseball game might be in order. (Big surprise, yeah?) Who knows, maybe I'll have to work that day. Werd.
One year after I took one too many steps towards the edge of life, one too many away from the oxygen I was being given and one too short to reach a nurse.
I am going to use today to reaffirm my own strength, the benefit of great doctors and nurses and the value of being loved and loving right back.
It seems strange going through this reminiscence without Leslie nearby, as she was the voice for me when I couldn't communicate and the pipeline through whom I received all of your messages of support, love and concern. Although I am currently cancer free now, I can see that my life will always be affected by the nasty disease that took me into a brief death last year, early in the morning on January 15th. This disease has changed the pattern of life that I knew, changed my direction, changed my outlook, and changed nearly everything I thought I knew.
I thought I knew what death was and I was, perhaps, frightened a bit. My experience showed me that there's nothing to worry about, and, as I experienced (or just plain old dreamed up some scenario) that it wasn't my time to go, nor was I anywhere close to my time. So I came back for my things, my friends, my family and for my love.
Take a moment to think about what you thought you knew and throw it out. Just realize that all we have is our connection to each other, our shared experiences and nothing else. The rest of the things that occupy our lives, the TV, the sports, the food, the cars, computers, all the STUFF, don't matter at all. The only thing that matters is our feelings for one another and the time we can spend while we have it. together. When it is gone, this time thing, it's gone. Repairs cannot be made at the rest stop down the road, for all of our roads don't neccesarily follow the same route. Take care in those that matter to you and leave those that don't outside of your mind and hearts.
My heart is currently working pretty well and my blood levels are cooperating with keeping me out of the hospital and away from new blood transfusions. I'm trying to get an approval from the good doctor to return me to work. Think of that; I might just return to work soon! Of course, last fall I kept hearing, "Maybe next month" from my doctor's mouth, so I'm leery of feeling too good about what might happen and I'm trying to concentrate on what is happening. And what is happening is I'm feeling really good. I'm getting sustained good moods, high levels of activity and I can think fairly well without the dreaded 'cancer-brain' swiss cheese effect. Which makes me as good as the average employee. Of course, I fear for an illness setting in and sending me back to the hospital. I have fear about chemicals and fears about hanging out near people that may or may not be sick, I can't tell. Is that a runny nose from the cold weather or a runny nose from a cold? Did they wash their hands? Before or after they shook my hand? Purell never looked so good to me. While I wait for the doctor to give me the 'okay' and while I debate over the next step in my upside-down life, I'm concentrating on making my home neater, brighter and better. This big house is going back on the market in March, as I believe I will be able to handle the weekly showings and the general upkeep that will be needed to keep the curb appeal high. I can also watch the football playoffs with interest because our beloved Bears are involved. And that means there will be group parties with the food, laughter and fun that come along with spending Sunday afternoon with your best peeps...
Now let me tell you, this is not an anniversary to be celebrated, this year after death, no, no, not at all. I could have easily have failed in my attempts to stay alive and not be here writing to you as I am. The true anniversary to be celebrated is the one on which I received my sister Jeanne's stem cells and started life with an entirely new blood system, one that is still in 'baby' mode. (Heck, I've not even gotten a measles or polio shot yet!) That is the day the medical team calls "Day Zero", and my new birthday! Whoo-Hoo, another birthday for me! I don't deserve two, but then, Guy Fiero doesn't deserve to filmed while wielding a knife. So I get two now! This April 27th will mark my new birthday, Year One. I'm thinking a baseball game might be in order. (Big surprise, yeah?) Who knows, maybe I'll have to work that day. Werd.
Monday, January 3, 2011
Happy New Year!!!
Was that a tough year or what?
A year ago today I went to the hospital to check out a severe pain in my back, thinking that at the very worst I had a broken rib. It never occurred to me that the lump under my ribs was my spleen. It never occurred to me that the pain I felt while breathing was more serious than a bone poking into my lung. Now that would be pretty serious, yes? And who among you thinks that I would go about injuring myself in such a simple way. No, I was having serious issues with organs and blood, all secretive and microscopic. In my defense, the ER doctor was going to let me go home with a handful of Vicodin. I still have my initial diagnosis and prescribed action of Physical Therapy and painkillers, ironic because two weeks later I ceased movement altogether. I would have had a tougher year if I took the first diagnosis given to me. I was saved by the insistence of Leslie, who was my angel and my love. I can never thank her enough for that persistence, but sadly we have gone our own ways now. Cancer, which I was finally diagnosed with a few days later, takes its toll on a lot of things.
Basically, I've spent the whole year fighting cancer. Sometimes more directly than others, but it has been cancer I've been fighting, even when the current diagnosis is pneumonia, the gangster behind the scenes is cancer. My current health situation is "barely healthy", but "holding serve". What this means is my blood levels (WBC, Hemoglobin, Platelets, etc.) are just above the levels to send me back into the hospital to have IVs and hourly testing and observation. It appears that my counts are not getting into normal ranges yet, but they are slowly moving there. Slower than that. Slower still. Almost at a standstill. Little bit faster now.
This year has taught me that stubborness, willpower and patience can get you through some real tough situations. Most of the physical is willpower, which surprised the hell out of me. This year, I've had to do things physically I never even thought about. I never think twice about walking, yet I had to learn to do it all over. Many more things just like that. This year had brought me more tears than I thought I could cry, more pain than I thought I could endure and more love into my heart and life than I certainly deserve and never thought existed in such quantities. This year I've made many new connections and reconnected some old ones. I've gotten so much love this year and it has buoyed me through the extremely difficult times, when darkness seemed destined to take over, always someone stood up and lifted me up.
I thank you all for your support and kindness. I will attempt to repay you with unusually good spirits and appreciation for the life we all share.
This year has given me challenges I didn't foresee and so many, many drugs I never wanted to take. There were some days that I literally told the time according to the pills I was swallowing. At least now, I use a timer to indicate my next dosage. Without work to guide my workweek, all the days seem to run together. I use the weekly pill holder to tell me the days, otherwise I couldn't keep straight if I had taken my dosage for three O'clock when I was in the middle of my 7 O'clock dosage. Very confusing. I think I've got it down now, I hope there's nothing added to my schedule now that is taken more than once a day.
Also this year, I developed a sweet tooth. I cannot recall having one before, even as a child, but now, I go through serious cravings for sweet things. Cookies, candies and chocolate. And have I figured out some of my chocolate problems from a couple of years ago! I'm trying hard to stay out of making of small chocolates, because I don't think I need the pounds added to me. I'm rather liking my weight while it remains under 200#s. I play golf better and my clothes fit better, except for my tux. Oh yeah and that blue blazer. Okay I like how t-shirts and dress shirts fit me.
I learned this year that the patient is in charge of their care. I learned how to talk to doctors, how not to talk to doctors and how to ask for better care. I also learned that nurses are truly underrated and wonderful.
This past year I'd like to place in a lucite box. I'd like to look at it from time to time, but I would rather not live through most of it again. In a lucite box, I could see which parts are loose and fall about, which parts are solid and strong, and all of it never let out again.
Let's make this new year a fantastic one, with smaller challenges and higher rewards.
Let's make this new year one that we want to live over and over again.
Let's make it a year to remember fondly and lovingly.
Let's make it a year of prosperity.
Let's make it everything we want.
Let's beat the challenges.
Who's with me?
A year ago today I went to the hospital to check out a severe pain in my back, thinking that at the very worst I had a broken rib. It never occurred to me that the lump under my ribs was my spleen. It never occurred to me that the pain I felt while breathing was more serious than a bone poking into my lung. Now that would be pretty serious, yes? And who among you thinks that I would go about injuring myself in such a simple way. No, I was having serious issues with organs and blood, all secretive and microscopic. In my defense, the ER doctor was going to let me go home with a handful of Vicodin. I still have my initial diagnosis and prescribed action of Physical Therapy and painkillers, ironic because two weeks later I ceased movement altogether. I would have had a tougher year if I took the first diagnosis given to me. I was saved by the insistence of Leslie, who was my angel and my love. I can never thank her enough for that persistence, but sadly we have gone our own ways now. Cancer, which I was finally diagnosed with a few days later, takes its toll on a lot of things.
Basically, I've spent the whole year fighting cancer. Sometimes more directly than others, but it has been cancer I've been fighting, even when the current diagnosis is pneumonia, the gangster behind the scenes is cancer. My current health situation is "barely healthy", but "holding serve". What this means is my blood levels (WBC, Hemoglobin, Platelets, etc.) are just above the levels to send me back into the hospital to have IVs and hourly testing and observation. It appears that my counts are not getting into normal ranges yet, but they are slowly moving there. Slower than that. Slower still. Almost at a standstill. Little bit faster now.
This year has taught me that stubborness, willpower and patience can get you through some real tough situations. Most of the physical is willpower, which surprised the hell out of me. This year, I've had to do things physically I never even thought about. I never think twice about walking, yet I had to learn to do it all over. Many more things just like that. This year had brought me more tears than I thought I could cry, more pain than I thought I could endure and more love into my heart and life than I certainly deserve and never thought existed in such quantities. This year I've made many new connections and reconnected some old ones. I've gotten so much love this year and it has buoyed me through the extremely difficult times, when darkness seemed destined to take over, always someone stood up and lifted me up.
I thank you all for your support and kindness. I will attempt to repay you with unusually good spirits and appreciation for the life we all share.
This year has given me challenges I didn't foresee and so many, many drugs I never wanted to take. There were some days that I literally told the time according to the pills I was swallowing. At least now, I use a timer to indicate my next dosage. Without work to guide my workweek, all the days seem to run together. I use the weekly pill holder to tell me the days, otherwise I couldn't keep straight if I had taken my dosage for three O'clock when I was in the middle of my 7 O'clock dosage. Very confusing. I think I've got it down now, I hope there's nothing added to my schedule now that is taken more than once a day.
Also this year, I developed a sweet tooth. I cannot recall having one before, even as a child, but now, I go through serious cravings for sweet things. Cookies, candies and chocolate. And have I figured out some of my chocolate problems from a couple of years ago! I'm trying hard to stay out of making of small chocolates, because I don't think I need the pounds added to me. I'm rather liking my weight while it remains under 200#s. I play golf better and my clothes fit better, except for my tux. Oh yeah and that blue blazer. Okay I like how t-shirts and dress shirts fit me.
I learned this year that the patient is in charge of their care. I learned how to talk to doctors, how not to talk to doctors and how to ask for better care. I also learned that nurses are truly underrated and wonderful.
This past year I'd like to place in a lucite box. I'd like to look at it from time to time, but I would rather not live through most of it again. In a lucite box, I could see which parts are loose and fall about, which parts are solid and strong, and all of it never let out again.
Let's make this new year a fantastic one, with smaller challenges and higher rewards.
Let's make this new year one that we want to live over and over again.
Let's make it a year to remember fondly and lovingly.
Let's make it a year of prosperity.
Let's make it everything we want.
Let's beat the challenges.
Who's with me?
Thursday, December 23, 2010
Merry Christmas!
Merry Christmas, everybody!
I hope that this holiday brings you everything you could want. May the weather treat you right and the food be bountiful.
I'm having a hard time getting into the Christmas spirit. I make cookies for people and that helps a lot, especially if I play something 'holidayish' in the background as I bake. So far i've made Meringue cookies, Oatmeal Raisin cookies and Sugar cookies. Tomorrow I plan on making a bunch more meringues and try to master them. Plus I to make some coffee flavored ones.
I think the reason I'm having a hard time going all Christmas is all of my longing for the end of the year; As you all know, this year has not been very kind to me. Each month has brought a new challenge, some more frightening than others. All I can do is countdown until the new year begins and things can really crank out new. Still, I fear for the return of cancer, not that there's been ANY sign of that, but little things that I think were markers as I look back on the year before I was diagnosed make me paranoid and a little bit worried. Then I have lowering hemoglobin counts and have to hope that the full-on white blood cells aren't in full-on attack mode and wiping out my oxygen-carrying cells. This trait could be a bad sign, one leading to "transfusion dependency" or something like that. Whatever it's called I don't want any part of it, as the transfusion process is not what you would call a useful way to spend time.
Speaking of transfusion, while I was in the hospital last month, my condition had gotten so bad the call was sent out to my sister Jeanne for another round of stem cells for a transfusion to help me out of my bad blood battle. She complied and the stem cells are now sitting at UCMC waiting for my next health failure. Optimistic thought process, isn't it? Well, as you know by now, my body did battle and kicked pneumonia's ass and the doctors have no idea what happened or why. So all I'm asking for Christmas is to remain healthy and stay out of Señor Transfusion's way. A transfusion sticks me in the hospital for 21 days at a minimum and I'd rather not think about that option, as last month was nearly completed in a room where everyone who came in had to wear a mask. If I can avoid that mess and cruise though a couple of months with not too many challenges, I will be a very happy man. A few of you may know, I'm a lot easier to deal with when I'm happy. Right now, just waking up makes me happy. Hell, I got happy when I cleaned the snow off of my car the other day. Of course, I didn't clean any snow off of my car all of last winter, so I was due.
Worried, I may be, but my spirits remain high, as evidenced by this photo:
Now, does anybody want a meringue cookie? I'll be starting them in the morning.
Right after breakfast.
I hope that this holiday brings you everything you could want. May the weather treat you right and the food be bountiful.
I'm having a hard time getting into the Christmas spirit. I make cookies for people and that helps a lot, especially if I play something 'holidayish' in the background as I bake. So far i've made Meringue cookies, Oatmeal Raisin cookies and Sugar cookies. Tomorrow I plan on making a bunch more meringues and try to master them. Plus I to make some coffee flavored ones.
I think the reason I'm having a hard time going all Christmas is all of my longing for the end of the year; As you all know, this year has not been very kind to me. Each month has brought a new challenge, some more frightening than others. All I can do is countdown until the new year begins and things can really crank out new. Still, I fear for the return of cancer, not that there's been ANY sign of that, but little things that I think were markers as I look back on the year before I was diagnosed make me paranoid and a little bit worried. Then I have lowering hemoglobin counts and have to hope that the full-on white blood cells aren't in full-on attack mode and wiping out my oxygen-carrying cells. This trait could be a bad sign, one leading to "transfusion dependency" or something like that. Whatever it's called I don't want any part of it, as the transfusion process is not what you would call a useful way to spend time.
Speaking of transfusion, while I was in the hospital last month, my condition had gotten so bad the call was sent out to my sister Jeanne for another round of stem cells for a transfusion to help me out of my bad blood battle. She complied and the stem cells are now sitting at UCMC waiting for my next health failure. Optimistic thought process, isn't it? Well, as you know by now, my body did battle and kicked pneumonia's ass and the doctors have no idea what happened or why. So all I'm asking for Christmas is to remain healthy and stay out of Señor Transfusion's way. A transfusion sticks me in the hospital for 21 days at a minimum and I'd rather not think about that option, as last month was nearly completed in a room where everyone who came in had to wear a mask. If I can avoid that mess and cruise though a couple of months with not too many challenges, I will be a very happy man. A few of you may know, I'm a lot easier to deal with when I'm happy. Right now, just waking up makes me happy. Hell, I got happy when I cleaned the snow off of my car the other day. Of course, I didn't clean any snow off of my car all of last winter, so I was due.
Worried, I may be, but my spirits remain high, as evidenced by this photo:
Now, does anybody want a meringue cookie? I'll be starting them in the morning.
Right after breakfast.
Thursday, December 16, 2010
Not quite back to September standing, but...
I saw my attending physician yesterday, apparently I've taken a whole new step in my health care: I completely ignored the "take One a day" and moved it on down to zero, in regards to this steroid I was on. This steroid was to help my blood from fighting amongst itself, in the classic Lewis Carroll version of Red versus White. Well, after reading the written instructions day after day while the dose decreased, I got to one a day, took one one day and then just stopped. After testing me, the doc said, okay, don't take anymore. Perhaps I can be in the guessing game, too.
Most of you are probably wondering how I'm feeling. To tell you the truth, this week and most of last, I don't feel sick at all. I've no longer got the pneumonia, my strength is coming back, some through workout, some through increased red cell (and hemogloblin) counts, I'm free to eat anything I choose, and do. I've got mobility in the form of car, I've got time to shop in odd hours so I miss the sick people, and I even managed to get myself two pairs of glasses after wearing a busted up pair for a year.
And what a year it was! I do believe this has been the longest year I ever lived. It started so well, I was in love, fat and happy from New Year's Eve, just floating along, then, "wham"! I'm in the hospital and I've got issues and as listed on my hospital chart "problems". What a list of problems that is! If you'd like to talk about permanent records, the hospital's got mine listed and ready for viewing. It's an impressive list that I hope none of you achieve.
Perhaps next year I will be afforded the opportunity to return to work. Maybe a travel to L.A, or even Hawaii. I do know that next year will cost me more than this past year, due to some insurance changes, darnit. Just as long as I stay out of "Lifetime Limits" and "Out-of-Network, Out-of-Pocket" areas, I ought to manage. Still, there are ghosts of plans for fund-raisers to help me with the ever mounting bills and for those planning, I thank you. I'd like to plan a golf fund-raiser, but I'm afraid we'd drink the profits right out of that one. We shall see what 2011 brings us, I'm hoping for health most of all and a hospital-free year. The odds are stacked against me, for I've still got the immune system of a baby, as I just received my second pneumonia shot yesterday, next immunization shot in two months. The odds are stacked because I live in a city where a sniffle is ever present and public transportation is a crowded and dirty affair. The odds are stacked because my lungs are susceptible to infection and I've got the golden ticket for pneumonia. I don't want this ticket, but somehow I won it and it is non-transferable. Plus, no one seems to wish to buy it off of me. Another darnit.
If anybody has any free time over Christmas break, I would welcome your company for a puzzle, a card game (cribbage, anyone?) or playing of video games. Or anything else! I'm free to travel to lightly populated places and hope that my attitude might lighten up enough to have some fun with ya. Of course, now, the museum or other places of high children content would be out of the picture.
Looking forward to next year, aren't you?
Most of you are probably wondering how I'm feeling. To tell you the truth, this week and most of last, I don't feel sick at all. I've no longer got the pneumonia, my strength is coming back, some through workout, some through increased red cell (and hemogloblin) counts, I'm free to eat anything I choose, and do. I've got mobility in the form of car, I've got time to shop in odd hours so I miss the sick people, and I even managed to get myself two pairs of glasses after wearing a busted up pair for a year.
And what a year it was! I do believe this has been the longest year I ever lived. It started so well, I was in love, fat and happy from New Year's Eve, just floating along, then, "wham"! I'm in the hospital and I've got issues and as listed on my hospital chart "problems". What a list of problems that is! If you'd like to talk about permanent records, the hospital's got mine listed and ready for viewing. It's an impressive list that I hope none of you achieve.
Perhaps next year I will be afforded the opportunity to return to work. Maybe a travel to L.A, or even Hawaii. I do know that next year will cost me more than this past year, due to some insurance changes, darnit. Just as long as I stay out of "Lifetime Limits" and "Out-of-Network, Out-of-Pocket" areas, I ought to manage. Still, there are ghosts of plans for fund-raisers to help me with the ever mounting bills and for those planning, I thank you. I'd like to plan a golf fund-raiser, but I'm afraid we'd drink the profits right out of that one. We shall see what 2011 brings us, I'm hoping for health most of all and a hospital-free year. The odds are stacked against me, for I've still got the immune system of a baby, as I just received my second pneumonia shot yesterday, next immunization shot in two months. The odds are stacked because I live in a city where a sniffle is ever present and public transportation is a crowded and dirty affair. The odds are stacked because my lungs are susceptible to infection and I've got the golden ticket for pneumonia. I don't want this ticket, but somehow I won it and it is non-transferable. Plus, no one seems to wish to buy it off of me. Another darnit.
If anybody has any free time over Christmas break, I would welcome your company for a puzzle, a card game (cribbage, anyone?) or playing of video games. Or anything else! I'm free to travel to lightly populated places and hope that my attitude might lighten up enough to have some fun with ya. Of course, now, the museum or other places of high children content would be out of the picture.
Looking forward to next year, aren't you?
Wednesday, December 1, 2010
I'm not imagining things. Yet.
So I have been home for a little more than a week. Last Wednesday found me spending all day in the hospital, back in 5NE, only this time I was waiting for blood to be given to me. If you have been keeping track, these were pints 9 and 10 for the month. Which is all the blood a body can store, 8 to 10 pints. Since I've received so much blood, there was an extra step the technicians had to take (and from now on) which is to match anti-bodies in the blood and not just type. Total time waster. And on Wednesday, I was 1.) unprepared for the blood transfusion, 2.) Unaware of the extra typing that had to be done for me to receive blood and 3.) mad as hell that it took more than 9 hours to get me my blood. Add to that the four hours it takes to transfuse the blood, and I get home at midnight. Mind you, I'm still tired from my release less than 48 hours earlier after spending 19 days in a very small room. My mood on Thanksgiving was less than stellar. The food that my good friend had cooked up was uplifting, as was the testosterone filled movie. So there was that.
All this blood reception business was to insure that I remained healthy over the long weekend, so I could remain out of the emergency room and another stay at UCMC. Today I roll in for check up (on the 1st of December, hello snow!) and find that my white cells have been attacking all the red blood cells, not recognizing them as their own, rather, seeing the red blood cells as invaders and removing them. Only this is bad internally, but treatable, I'm told. This news makes me feel better because I was starting to stress about how much stairs affected me and stole my wind. Medium to long walks were wiping me out, too, but I was attributing this symptom to the pneumonia, which I am still kicking ass on. The good doctor also explained that my heart and lungs are working in fine form because I am able to get around even through this lack of red blood cells.
I just thought I was looking really pale because I haven't been outside in a couple of months, first from the cold, then from the stay in isolation, multiplied by my white heritage of Irish and Polish and whatever. No, Turns out I'm pale as paper due to lack of red blood cells. Which, HEY! Surprise!, I am receiving more of tomorrow. Hopefully without to much of a wait. I will be getting someone else to give me ride, because the treatment I've been put on starting today, is a little pill that will make me go crazy. (crazier?) A steroid called Prednisone, if you want to look it up. Combine that with the rest of my meds, and I will be seeing things and getting goofy with my moods. I've already got tripped out dreams from one of my meds, this will only amplify and release the weirdness into the daytime hours. A good thing though, is this drug will increase my appetite, which has been horrifically on the negative side. Maybe I will imagine something tasty wandering through my living room. Look out, dog!
All this blood reception business was to insure that I remained healthy over the long weekend, so I could remain out of the emergency room and another stay at UCMC. Today I roll in for check up (on the 1st of December, hello snow!) and find that my white cells have been attacking all the red blood cells, not recognizing them as their own, rather, seeing the red blood cells as invaders and removing them. Only this is bad internally, but treatable, I'm told. This news makes me feel better because I was starting to stress about how much stairs affected me and stole my wind. Medium to long walks were wiping me out, too, but I was attributing this symptom to the pneumonia, which I am still kicking ass on. The good doctor also explained that my heart and lungs are working in fine form because I am able to get around even through this lack of red blood cells.
I just thought I was looking really pale because I haven't been outside in a couple of months, first from the cold, then from the stay in isolation, multiplied by my white heritage of Irish and Polish and whatever. No, Turns out I'm pale as paper due to lack of red blood cells. Which, HEY! Surprise!, I am receiving more of tomorrow. Hopefully without to much of a wait. I will be getting someone else to give me ride, because the treatment I've been put on starting today, is a little pill that will make me go crazy. (crazier?) A steroid called Prednisone, if you want to look it up. Combine that with the rest of my meds, and I will be seeing things and getting goofy with my moods. I've already got tripped out dreams from one of my meds, this will only amplify and release the weirdness into the daytime hours. A good thing though, is this drug will increase my appetite, which has been horrifically on the negative side. Maybe I will imagine something tasty wandering through my living room. Look out, dog!
Tuesday, November 23, 2010
Home, but undiagnosed.
Last night I was shipped home from UCMC and my little isolation room. Twice in the past nineteen days I made journeys from that small room, once for a CT Scan of my chest (I keep asking how many I've had this year, but no seems to want to tell me) and once for a Echocardiogram that I foretold as a waste of time and energy, but the doctorbs seemed to want to through with anyway. I managed to 'escape' from the hospital without the doctorbs taking a chunk from my lung, inserting a chest tube and generally setting my health on an edge, just for 25% chance of identifying the pneumonia I have (had?) in my lungs. That was their plan, and I'll be damned if I'm SIGNING UP for a chest tube. And it's lovely companion, the Pleurovac A-6000. Having a chest tube inserted in your side is akin to having a vaccuum tube (it's that hard) inserted on one end of your lung, on your side. My scar from the last one is still three inches long, dark purple and nasty looking. It's that kind of fun.
Apparently the shots they started handing me of neupagen did the trick for me. They raised my WBC to levels where I could start fighting off the crappy diseases by myself. Raised them from my entering numbers of 0.2 to yesterday's number of 4.7
4.7 is a normal person's count. Now, I'm nowhere near normal, in any arena of my life, but that neupagen gave me strength to begin to stop coughing all day, stop being tired all day every day and get going with the process of getting better.
Upon seeing my WBCs climb, the doctorbs started to wean me off all the IV antibiotics I was on and start me on oral antibiotics, because, let's remember here, the docs still hadn't figured out what I had. All they saw was improvement in my health and they did not know why so they wished to keep me on all the meds they could so as to release me under my terms. In the previous week, the doctorbs had wished to release me home with an IV, an IV pole, and somehow magically get back and forth from the clinic three times weekly. That was one option, which I turned down. Another of their fine ideas was to send me to a nursing home, which I also turned down. Then I demanded they just figure out what the hell is wrong with me, or at least give me something so that I may fight it off. I kept reitterating that I kicked Cancer's ass, and right now I needed just little help and I would kick this pneumonia's ass too. I fought these docs hard, I gotta tell you.
They never figured out what is wrong with me, other than having the common cold, but at least now, I am home, I can sleep for more that three hours uninterrupted, I can shave this beard off, I can shower!, I can cook and I can begin to get back to where I was before October brought me a cold.
Happy Thanksgiving, Everybody.
I've got lots to be thankful for, and I hope you are all very happy on Turkey day and gorge yourself on love and happiness.
PS: The color of Leukemia Awareness's Ribbon is Orange. There's a week in February dedicated to it, and September is the month. Just FYI...
Apparently the shots they started handing me of neupagen did the trick for me. They raised my WBC to levels where I could start fighting off the crappy diseases by myself. Raised them from my entering numbers of 0.2 to yesterday's number of 4.7
4.7 is a normal person's count. Now, I'm nowhere near normal, in any arena of my life, but that neupagen gave me strength to begin to stop coughing all day, stop being tired all day every day and get going with the process of getting better.
Upon seeing my WBCs climb, the doctorbs started to wean me off all the IV antibiotics I was on and start me on oral antibiotics, because, let's remember here, the docs still hadn't figured out what I had. All they saw was improvement in my health and they did not know why so they wished to keep me on all the meds they could so as to release me under my terms. In the previous week, the doctorbs had wished to release me home with an IV, an IV pole, and somehow magically get back and forth from the clinic three times weekly. That was one option, which I turned down. Another of their fine ideas was to send me to a nursing home, which I also turned down. Then I demanded they just figure out what the hell is wrong with me, or at least give me something so that I may fight it off. I kept reitterating that I kicked Cancer's ass, and right now I needed just little help and I would kick this pneumonia's ass too. I fought these docs hard, I gotta tell you.
They never figured out what is wrong with me, other than having the common cold, but at least now, I am home, I can sleep for more that three hours uninterrupted, I can shave this beard off, I can shower!, I can cook and I can begin to get back to where I was before October brought me a cold.
Happy Thanksgiving, Everybody.
I've got lots to be thankful for, and I hope you are all very happy on Turkey day and gorge yourself on love and happiness.
PS: The color of Leukemia Awareness's Ribbon is Orange. There's a week in February dedicated to it, and September is the month. Just FYI...
Monday, November 15, 2010
I thought I'd be out of here by now...
I've been here now in "isolation" for 13 days, with nothing new to report. The doctors are unaware what type of Pneumonia I've got, they haven't yet stopped the fevers and I'm still very sick with what I and the doctors can tell is a cold. Okay, well, they did stop the fevers for like a week, but they decided to take me off a an antibiotic randomly and then my fevers came back. So much for Dr. guesswork. I'm also still battling a sore throat; it seems that the back of my throat is awfully sensitive and barks at me when I try to enjoy things that are acidic, like orange juice, tomato sauce, hot peppers, etc. Basicly, the spice I like to eat on a daily basis. So the blandness of the food isn't helping my already poor appetite. I'm going down white bread lane and I'm not happy about it at all.
It seems like when i get a fever in here, I get far less rest and sleep than one would expect a hospital to be allowing. First, there are blood cultures which must be taken while feverish. Then there is the X-ray dude who comes and gives me a chest x-ray, then there is, or sometimes not, the delivery of Tylenol to help me out. Mostly not, as that gets forgotten with all the tests on everybody's mind. Then there's the early morning blood draw, followed by vital sign taking (which also happens during fever), then in comes housecleaning, followed by a nurse changing my IV, and every single one of these people apologise for waking me up and tell me I should get some rest. Finally i order breakfast, and sleep until they bring it, then I go back to sleep for fifteen minutes, to be waken by a doctor or nurse coming to check on my lungs or whatever. Then i eat and go back to sleep.
Jeebus, I'm tired.
So I have been giving the doctors a ten ton of crap, demanding answers for their actions, asking the right questions and generally putting them on the spot and making them squirm. I ask them why they decided 'that' antibiotic was the one that was unimportant. i ask them when they will identify the disease in my lungs. I ask them when the fevers will stop. And i ask them to tell me honestly when I will be going home. So far, I've got no answers, just a lot of frustration. Poor little doctors don't realize how bad they are going to be reamed if they don't start producing results. I'm just not good with frustration.
It seems like when i get a fever in here, I get far less rest and sleep than one would expect a hospital to be allowing. First, there are blood cultures which must be taken while feverish. Then there is the X-ray dude who comes and gives me a chest x-ray, then there is, or sometimes not, the delivery of Tylenol to help me out. Mostly not, as that gets forgotten with all the tests on everybody's mind. Then there's the early morning blood draw, followed by vital sign taking (which also happens during fever), then in comes housecleaning, followed by a nurse changing my IV, and every single one of these people apologise for waking me up and tell me I should get some rest. Finally i order breakfast, and sleep until they bring it, then I go back to sleep for fifteen minutes, to be waken by a doctor or nurse coming to check on my lungs or whatever. Then i eat and go back to sleep.
Jeebus, I'm tired.
So I have been giving the doctors a ten ton of crap, demanding answers for their actions, asking the right questions and generally putting them on the spot and making them squirm. I ask them why they decided 'that' antibiotic was the one that was unimportant. i ask them when they will identify the disease in my lungs. I ask them when the fevers will stop. And i ask them to tell me honestly when I will be going home. So far, I've got no answers, just a lot of frustration. Poor little doctors don't realize how bad they are going to be reamed if they don't start producing results. I'm just not good with frustration.
Thursday, November 4, 2010
You Let them do What?
Today finds me back in the comfort suites of the UCMC, as my battle against the fever that would not die, the hacking cough of hell and the sore throat of a giarraffe was going poorly. So Poorly, that i developed pneumonia. Which could flat out kill me. So I got admitted Wednesday, saw a battery of doctors, talked to too many nurses and had a fitfull first day.
So there are many questions:
Did i get pneumonia because my cold had just gotten that bad?
was the pneumonia able to infiltrate because the cold had pretty much knocked me down?
Either way, my heart is no longer racing, my head a bit clearer and I'm looking forward to seeing pictures of Stosh, so let's look at the bright side of things yeah?
There's the wonderment of the first snow, hockey is in full season, and they've got to put up that huge damn tree in Daley Plaza. And Thanksgiving should be fun for everyone. I am still on the "No Children" ban, so my family is going to get a Skype visit, perhaps from a decent viewing point.
Remember way back in January when I had a Bronchioscope and, they, like, poked a hole in my lung?
Well, it turns out I let them give me another Bronchioscope this morning. Maybe it was 104.4 fever. Maybe is was my delusional state after so many nights of not sleeping. Maybe I just knew that it was my best chance to identify this pneumonia so I can get back to being Mark and stop trying to fight a fever on a daily basis.
all right, I'm tired, I feel like i can sleep and I am going to take advantage of that.
So there are many questions:
Did i get pneumonia because my cold had just gotten that bad?
was the pneumonia able to infiltrate because the cold had pretty much knocked me down?
Either way, my heart is no longer racing, my head a bit clearer and I'm looking forward to seeing pictures of Stosh, so let's look at the bright side of things yeah?
There's the wonderment of the first snow, hockey is in full season, and they've got to put up that huge damn tree in Daley Plaza. And Thanksgiving should be fun for everyone. I am still on the "No Children" ban, so my family is going to get a Skype visit, perhaps from a decent viewing point.
Remember way back in January when I had a Bronchioscope and, they, like, poked a hole in my lung?
Well, it turns out I let them give me another Bronchioscope this morning. Maybe it was 104.4 fever. Maybe is was my delusional state after so many nights of not sleeping. Maybe I just knew that it was my best chance to identify this pneumonia so I can get back to being Mark and stop trying to fight a fever on a daily basis.
all right, I'm tired, I feel like i can sleep and I am going to take advantage of that.
Friday, October 29, 2010
I'm being dragged down by the common cold
Okay sportsfans, I'll give you the sugar first.
Back on Day 180, I had a bone morrow biopsy, which was the best one so far in terms of pain. Which, of course is like saying I had the best root canal ever. And the results, well, they remain the same! "There is no evidence of leukemia in the marrow sample" Hooray for that, because I was worried, what with this three week cold of flus and the sore throat.
My WBC dropped down to 0.3, so they gave me a shot yesterday of Neuplasta, a longer-lasting version of Neupagen. And there is concern for for my other counts, so I have to go in on Wednesday for a CBC and possible blood transfusion. I'm telling you, this cold thing is a Rhino!
I'm still hanging in there, I just don't have a whole lot of energy and get tired in a very short period of time. Stupid Blood. I just wish I could sleep for a long period of time. Waking up every 2 hours is very disruptive. Last night I did manage to get a solid six hour sleep with dreams included and it felt wonderful.
If I were back at work, I would have missed three weeks this month. With a cold.
Is that just nuts? Doctor knows best I suppose. I've just got to evade the pneumonia.
That'll be be the end of me I fear.
I'm trying to use all this "sick time" to just do little tiny things around the house. Things I've been meaning to do for a while, but I let slide while I was able to enjoy the outside. Moving lamps, putting away boxes that have been sitting on the floor for months, just real small stuff, remember I get tired real easy. But these small accomplishments make me feel productive and raise my spirits a bit.
Talk about raising spirits, have any of you been watching this AMAZING set of baseball playoffs? The Giants appear to raising the spirit of the whole of San Fransisco. The fans rendition of Journey's "The Lights" made me cry. seriously.
I will be back next week with updates from Weds.
Until then, it's loads of peppermint tea with loads of honey, so I can keep chugging water. If any of you would like to cure the cold, I'm ready.
Back on Day 180, I had a bone morrow biopsy, which was the best one so far in terms of pain. Which, of course is like saying I had the best root canal ever. And the results, well, they remain the same! "There is no evidence of leukemia in the marrow sample" Hooray for that, because I was worried, what with this three week cold of flus and the sore throat.
My WBC dropped down to 0.3, so they gave me a shot yesterday of Neuplasta, a longer-lasting version of Neupagen. And there is concern for for my other counts, so I have to go in on Wednesday for a CBC and possible blood transfusion. I'm telling you, this cold thing is a Rhino!
I'm still hanging in there, I just don't have a whole lot of energy and get tired in a very short period of time. Stupid Blood. I just wish I could sleep for a long period of time. Waking up every 2 hours is very disruptive. Last night I did manage to get a solid six hour sleep with dreams included and it felt wonderful.
If I were back at work, I would have missed three weeks this month. With a cold.
Is that just nuts? Doctor knows best I suppose. I've just got to evade the pneumonia.
That'll be be the end of me I fear.
I'm trying to use all this "sick time" to just do little tiny things around the house. Things I've been meaning to do for a while, but I let slide while I was able to enjoy the outside. Moving lamps, putting away boxes that have been sitting on the floor for months, just real small stuff, remember I get tired real easy. But these small accomplishments make me feel productive and raise my spirits a bit.
Talk about raising spirits, have any of you been watching this AMAZING set of baseball playoffs? The Giants appear to raising the spirit of the whole of San Fransisco. The fans rendition of Journey's "The Lights" made me cry. seriously.
I will be back next week with updates from Weds.
Until then, it's loads of peppermint tea with loads of honey, so I can keep chugging water. If any of you would like to cure the cold, I'm ready.
Monday, October 18, 2010
Sick for a week now, and a week more expected.
I started to feel ill last weekend, and truly felt bad Monday morning the 11th. Today is the 18th and I have been back to the U of C three times to try and garner some help for how awful I'm feeling. Everyday I fight off a low-grade fever, I have a wicked painful cough, and terrible sore throat. I've taken nearly every over-the-counter cold and flu remedy but nothing sticks and nothing seems to work two times in a row. Cough drops are my best friend right now, and I have been going to sleep with one in my mouth, usually waking up with it stuck to my arm.
What is this terrible ailment, you ask?
Lab test have confirmed it to be the almighty Rhinovirus. Yep, the common cold.
A cold used to, maybe, knock me down, at tops, for a half of a day. I have been bed-ridden for more than a week, and I'm getting tired of sleeping 19 hours a day, waking only for medicine, baseball, and soup.
My doctors have cleared my body of cancer - which we will test again this Friday - yet the common cold has kicked me down a flight of stairs and thrown grandma's piano after me.
I suppose I got over confident in my body's healing, and now I am paying the price.
Stupid cold.
Stupid me.
I'll let you know when I get on the good side again.
-Mark
What is this terrible ailment, you ask?
Lab test have confirmed it to be the almighty Rhinovirus. Yep, the common cold.
A cold used to, maybe, knock me down, at tops, for a half of a day. I have been bed-ridden for more than a week, and I'm getting tired of sleeping 19 hours a day, waking only for medicine, baseball, and soup.
My doctors have cleared my body of cancer - which we will test again this Friday - yet the common cold has kicked me down a flight of stairs and thrown grandma's piano after me.
I suppose I got over confident in my body's healing, and now I am paying the price.
Stupid cold.
Stupid me.
I'll let you know when I get on the good side again.
-Mark
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