What a great Beatle song! AND IT DOES.....we hope for a long time. Sorry for the long blog pause. Had nothing to report until Doc visit. Doc says you "should" be cured.....am I skeptical or is he? Now that's another story....for later.
Its been over a month since we last talked. Actually feeling good....most of the time I have energy and "walk like an Egyptian" ...however the mid- south allergens and the hot weather (the amazing ozone layer) sometimes take their toll. Numbers (see other posts) look good.....Platelets are responding slowly-...who would have thought that you would need more than 100000 of these babies.....And, I am getting rid of the chemo fog and actually starting to seek rationality-....although some would think otherwise. Summer is good for my psyche....I'm dreaming of the endless summer, surf city here we come, gotta take just one more ride, endless waves, and Hawaiian shores.....and just plain hanging at any beach I can find.....I'm even getting to think that lakes really have shores....ah! maybe.....and this is a good thing.....till later smile and stay happy and healthy.
Saturday, June 4, 2011
Saturday, April 23, 2011
Round em up; move em out - Engraftment
If you all remember when we started all of this, we were aiming at an outcome of something called "Engraftment". This means at Zero +9-11 days, after a shot of Neupogen (to stimulate white cell movement), there is an expectation that you white cell count will recover from zero to at least a respectable 500 or more neutrophils in a cubic millimeter of blood. For the more technical in the audience...
Neutrophil — A type of white blood cell
ANC — Absolute neutrophil count
Neutrophil engraftment — ANC count of 500 or more for 3 days in a row
Platelet engraftment — Platelet count of 20,000 - 50,000 (without platelet transfusion)
On Wed evening my system went into grafting mode...a little ahead of schedule....but this time I decided to be an A+ student. My whites were 0.5, my Neutrophils were 0.35, and everything was on the way up.....so we really couldn't call it grafting until we got the response the next day and exponentially for a few days....and if we could stay away from infection.....
Believe it or not by Thursday afternoon, I was released from the hospital and sent "cautiously" home-with a "boost" of platelets. I am on the way to recovery. Technically I have engraftment of the whites, but technically not the platelets yet.....but I'm sure Monday will bring this measurement.
Did the stem cells have a GPS.......yes and God has allowed me a new life.
There is no moral to this story. My body and mind will recover at a pace over the next 6 months to a year...and yes I'm going to push it because thats me and thats what I do.
Thanks for following my story, for all your prayers,chants, and motivating comments. Thanks for being there for me.....I will write as often as I can to keep you posted of my progress....I'm hoping to tell you most of it face to face.....
Love Y'all.....
Robert M. Cosenza
Neutrophil — A type of white blood cell
ANC — Absolute neutrophil count
Neutrophil engraftment — ANC count of 500 or more for 3 days in a row
Platelet engraftment — Platelet count of 20,000 - 50,000 (without platelet transfusion)
On Wed evening my system went into grafting mode...a little ahead of schedule....but this time I decided to be an A+ student. My whites were 0.5, my Neutrophils were 0.35, and everything was on the way up.....so we really couldn't call it grafting until we got the response the next day and exponentially for a few days....and if we could stay away from infection.....
Believe it or not by Thursday afternoon, I was released from the hospital and sent "cautiously" home-with a "boost" of platelets. I am on the way to recovery. Technically I have engraftment of the whites, but technically not the platelets yet.....but I'm sure Monday will bring this measurement.
Did the stem cells have a GPS.......yes and God has allowed me a new life.
There is no moral to this story. My body and mind will recover at a pace over the next 6 months to a year...and yes I'm going to push it because thats me and thats what I do.
Thanks for following my story, for all your prayers,chants, and motivating comments. Thanks for being there for me.....I will write as often as I can to keep you posted of my progress....I'm hoping to tell you most of it face to face.....
Love Y'all.....
Robert M. Cosenza
Tuesday, April 19, 2011
"The Deck"
One of my favorite words for life is "deck" (some "terra firma") a solid place that is mostly situational.
I remind you about the greatness of the word by showing you that by adding verbs, prepositions, etc., you can create whole new visual environments. For example, on deck, off deck, or get off the deck, or hit the deck, or I'll deck you!!!
John Wayne hit the deck a lot, so did Rocky B, and most recently as Vince Papale, and Irish Mickey Ward, Marky Mark hit the deck continuously.
OK, so do you really wanna be on the deck or would you rather be -Lets say-getting up from the deck. All of these proverbial and thought provoking conundrums of the mind could go on forever...so lets cut to the chase.
On Thursday late afternoon and evening , Zero Plus 3, I hit the deck three times...remembering mostly the sounds of battle (and one time ---but I'm not sure--so don't quote me on this....someone saying..don't hit him in the head...)
T made some remarkable slash and dashes to protect me (some that would have made Eli's Expensive but worthless RL Tackles envious). Dr. Pallera's look of horror (as we explained that ---no doc we didn't hit any walls, or solid objects, just the deck!) convinced me that outpatient stem cell care might be in its infancy or just not for me. So we checked me into to BMHE while the immune-suppression docs, nurses, and staff and all of my caretakers wait with me for stem cell grafting day. Believe me it's not easy here, but you don't need to focus on my stay. After all, I've been on deck 2 (NO NOT A PLEA FOR VISITORS...I HAVE NO IMMUNE SYSTEM)for almost a week, haven't hit any decks, nor have I decked anyone.......
I remind you about the greatness of the word by showing you that by adding verbs, prepositions, etc., you can create whole new visual environments. For example, on deck, off deck, or get off the deck, or hit the deck, or I'll deck you!!!
John Wayne hit the deck a lot, so did Rocky B, and most recently as Vince Papale, and Irish Mickey Ward, Marky Mark hit the deck continuously.
OK, so do you really wanna be on the deck or would you rather be -Lets say-getting up from the deck. All of these proverbial and thought provoking conundrums of the mind could go on forever...so lets cut to the chase.
On Thursday late afternoon and evening , Zero Plus 3, I hit the deck three times...remembering mostly the sounds of battle (and one time ---but I'm not sure--so don't quote me on this....someone saying..don't hit him in the head...)
T made some remarkable slash and dashes to protect me (some that would have made Eli's Expensive but worthless RL Tackles envious). Dr. Pallera's look of horror (as we explained that ---no doc we didn't hit any walls, or solid objects, just the deck!) convinced me that outpatient stem cell care might be in its infancy or just not for me. So we checked me into to BMHE while the immune-suppression docs, nurses, and staff and all of my caretakers wait with me for stem cell grafting day. Believe me it's not easy here, but you don't need to focus on my stay. After all, I've been on deck 2 (NO NOT A PLEA FOR VISITORS...I HAVE NO IMMUNE SYSTEM)for almost a week, haven't hit any decks, nor have I decked anyone.......
Thursday, April 14, 2011
Overheard in the Cracker Barrel: NO MEAT!
Zero +3.
I'm thinkin God put bacon on earth to help us understand what it means to be moderate and healthy and happy in our food choices...or to test us. And he is testing me right now through my impeccably fine tuned body.....(he said with a smirk)
And its the time in the Opus that I need to spin some words while the plot twists and turns are looming in the future episodes till grafting (a point where the three cells of life meet the new Cosenza bone marrow near Three Rivers Stadium (oh no that's not right...that's my baseball theme).
So where am I ....4 whites left, very few platelets (they are counting them by microscope), and very few reds. No its not the Billy Joel lyrics, A bottle of red, a bottle of white, it all depends upon your appetite, because the appetite...hence the food theme...is crazy. Everything I thought was part of my gourmet palette (including pizza) tastes horrible.
So as the caretakers spend hours and hours in the test kitchens trying to cook for my ornery self...I leave T with these words, I'll meet you any time you want
In our Italian Restaurant.
I'm thinkin God put bacon on earth to help us understand what it means to be moderate and healthy and happy in our food choices...or to test us. And he is testing me right now through my impeccably fine tuned body.....(he said with a smirk)
And its the time in the Opus that I need to spin some words while the plot twists and turns are looming in the future episodes till grafting (a point where the three cells of life meet the new Cosenza bone marrow near Three Rivers Stadium (oh no that's not right...that's my baseball theme).
So where am I ....4 whites left, very few platelets (they are counting them by microscope), and very few reds. No its not the Billy Joel lyrics, A bottle of red, a bottle of white, it all depends upon your appetite, because the appetite...hence the food theme...is crazy. Everything I thought was part of my gourmet palette (including pizza) tastes horrible.
So as the caretakers spend hours and hours in the test kitchens trying to cook for my ornery self...I leave T with these words, I'll meet you any time you want
In our Italian Restaurant.
Wednesday, April 13, 2011
ZERO +2: And then there were none. Ok it's not that bad!!!
Today I am at a 100 white cell count. Now what this means is ONLY FIVE of count are set for battle for a while against infection.
I'm hoping Colonel Travis gives the order this time an everyone stays and mans all sides of the Alamo. Four is definitely too few!
And their rations include powerful antibiotics, antivirals, with exotic names.....
I'm hoping Colonel Travis gives the order this time an everyone stays and mans all sides of the Alamo. Four is definitely too few!
And their rations include powerful antibiotics, antivirals, with exotic names.....
Tuesday, April 12, 2011
Zero Day +1: Or Honey I'm Almost Home!
We have heard so many cliches, songs, wit, etc., about home...Home on the range (Roy and Gene), Home is where you hang your hat, I'm already there (some country) Honey I'm home (Desi and Luci), Home away from home. wait till I get home, or like I would always told my mother...I'll be home in a minute (sure).... and there is even Home fries.....(where did that come from).
Well my Stem cell babies made the journey yesterday at about 9:30 am. It was supposed to be a magnificently orchestrated moment thanks to Dustin my IPOD musical Coordinator- with Blue Danube waltzing the babies in. Bottom line, the bubba cooler arrived, the babies were thawed and hung....and I fell asleep..... to awake complete with my 2.5 mil plus SCBs.
Yes they are in a home, me but not really in the home they need to be YET! my bone marrow. This will occur, if all goes well.....and why not! beginning on days 10-14 from zero day implant.
Right now I'm trying to stay healthy to help them along. To the chagrin of my Doctor for sure...I even had a sub sandwich this afternoon....Gotta do what you have to do.....to get along.
For those interested in Pics....here are some of the events...except the one of me sleeping and snoring big time.....
They Arrive
They are Defrosted
They are on their way!!!!!!!!
Oh by the way, to add another experience to the delivery.....let's give it an odoriferous same day next day...experience. What do stem cells smell like "after the fact" at least for a while as they ooooze into your system.
My Grandfather Erminio (gee I loved this Man) would eat a bowl or two of linguine vongolle (Clams) lots of onion, oil, garlic, butter, broth, and other amazing seasonings), some bruchetta -more roasted garlic,(actually five day old Italian bread) with the sharpest provolone cheese - you could cure in your cellar in wheels (like so good), drink one or two glasses of home-made Ginny red....go to sleep and then meet you at the breakfast table in the morning to pursue some conversational wisdom. Get the picture.
Well my Stem cell babies made the journey yesterday at about 9:30 am. It was supposed to be a magnificently orchestrated moment thanks to Dustin my IPOD musical Coordinator- with Blue Danube waltzing the babies in. Bottom line, the bubba cooler arrived, the babies were thawed and hung....and I fell asleep..... to awake complete with my 2.5 mil plus SCBs.
Yes they are in a home, me but not really in the home they need to be YET! my bone marrow. This will occur, if all goes well.....and why not! beginning on days 10-14 from zero day implant.
Right now I'm trying to stay healthy to help them along. To the chagrin of my Doctor for sure...I even had a sub sandwich this afternoon....Gotta do what you have to do.....to get along.
For those interested in Pics....here are some of the events...except the one of me sleeping and snoring big time.....
They Arrive
They are Defrosted
They are on their way!!!!!!!!
Oh by the way, to add another experience to the delivery.....let's give it an odoriferous same day next day...experience. What do stem cells smell like "after the fact" at least for a while as they ooooze into your system.
My Grandfather Erminio (gee I loved this Man) would eat a bowl or two of linguine vongolle (Clams) lots of onion, oil, garlic, butter, broth, and other amazing seasonings), some bruchetta -more roasted garlic,(actually five day old Italian bread) with the sharpest provolone cheese - you could cure in your cellar in wheels (like so good), drink one or two glasses of home-made Ginny red....go to sleep and then meet you at the breakfast table in the morning to pursue some conversational wisdom. Get the picture.
Sunday, April 10, 2011
Floating on the Blue Danube!
Last night in an ativan (prescribed) state of semi consciousness, I decided that my stem cell babies needed some stimulation on the ~9:30am journey into my system. Since my usual tour de force, AC/DC was unacceptable until they were a lot more mature, I decided on the beautiful Blue Danube Waltz......
Johann Strauss II -
Friday, April 8, 2011
Stem Cell Floatillas: Or do my patiently waiting Stem cells really have a home? A GPS?
Hello all: This is most likely the last post till Monday but it will get you in tune to my Monday infusion expectations.
Today is the end of the 2-5 Etoposide, Cytarabine cocktail. Things have been dicey. Tomorrow I begin a fast acting Chemo called Melphalan..Need to get it in and out so I can begin the stem cell infusion on Monday. This one comes with a half hour of ice chips in my mouth to keep my mucous membranes cool and not blistery.......
Chemo is done!!!!!!!
Enough Gore...let's have some fun.
The answer to the math question was easy...it is two bags defrosted.
How are they defrosted ?: Hold your breath. On Monday they are brought down from the cryo lab in an Igloo Cooler (They promised it wasn't Bubba's fishing or beer chest from the weekend). OK!..they are thawed out in a sink like device at 38-40 degrees Celsius until they are "Technically" and "Medically" (my words) SLUSHY. Then they are hung to drip into me and the journey for these little suckers begins......into my system to replicate and find their way into my bone marrow....
And NOW? Do they really have a GPS? Will they find their way. The evidence is intriguing!!!!
The intriguing news.....
An unknown function that regulates how stem cells produce different types of cells in different parts of the nervous system has been discovered by Stefan Thor, professor of Developmental Biology, and graduate students Daniel Karlsson and Magnus Baumgardt, at Linköping University in Sweden. The results improve our understanding of how stem cells work, which is crucial for our ability to use stem cells to treat and repair organs. The findings are published in the online, open-access journal PLoS Biology.
Stem cells are responsible for the creation of all cells in an organism during development. Previous research has shown that stem cells give rise to different types of cells in different parts of the nervous system. This process is partly regulated by the so-called Hox genes, which are active in various parts of the body and work to give each piece its unique regional identity - a kind of GPS system of the body. But how does a stem cell know that it is in a certain region? How does it read the body's "GPS" signals? And how is this information used to control the creation of specific nerve cells?
In order to address these issues, the LiU researchers studied a specific stem cell in the nervous system of the fruit fly. It is present in all segments of the nervous system, but it is only in the thorax, or chest region, that it produces a certain type of nerve cell. To investigate why this cell type is not created in the stomach or head region they manipulated the Hox genes' activity in the fly embryo.
It turned out that the Hox genes in the stomach region stop stem cells from splitting before the specific cells are produced. In contrast, the specific nerve cells are actually produced in the head region, but the Hox genes turn them into another, unknown, type of cell. Hox genes can thus exert their influence both on the genes that control stem cell division behaviour and on the genes that control the type of nerve cells that are created.
Well "Infuse Day" Monday is Day ZERO and in about 9-11 days later these big beautiful Stem Cell babies should hit pay-dirt...a long uphill journey then these babies are gonna pop to their senses and bring my white cell counts to glory!!!! Yay.!!!!!!
And like last week, the journey begins every day at O Dark 5am.......
See you all soon, smile, play, pray, and give someone a big hello......Love you bzers....
Today is the end of the 2-5 Etoposide, Cytarabine cocktail. Things have been dicey. Tomorrow I begin a fast acting Chemo called Melphalan..Need to get it in and out so I can begin the stem cell infusion on Monday. This one comes with a half hour of ice chips in my mouth to keep my mucous membranes cool and not blistery.......
Chemo is done!!!!!!!
Enough Gore...let's have some fun.
The answer to the math question was easy...it is two bags defrosted.
How are they defrosted ?: Hold your breath. On Monday they are brought down from the cryo lab in an Igloo Cooler (They promised it wasn't Bubba's fishing or beer chest from the weekend). OK!..they are thawed out in a sink like device at 38-40 degrees Celsius until they are "Technically" and "Medically" (my words) SLUSHY. Then they are hung to drip into me and the journey for these little suckers begins......into my system to replicate and find their way into my bone marrow....
And NOW? Do they really have a GPS? Will they find their way. The evidence is intriguing!!!!
The intriguing news.....
An unknown function that regulates how stem cells produce different types of cells in different parts of the nervous system has been discovered by Stefan Thor, professor of Developmental Biology, and graduate students Daniel Karlsson and Magnus Baumgardt, at Linköping University in Sweden. The results improve our understanding of how stem cells work, which is crucial for our ability to use stem cells to treat and repair organs. The findings are published in the online, open-access journal PLoS Biology.
Stem cells are responsible for the creation of all cells in an organism during development. Previous research has shown that stem cells give rise to different types of cells in different parts of the nervous system. This process is partly regulated by the so-called Hox genes, which are active in various parts of the body and work to give each piece its unique regional identity - a kind of GPS system of the body. But how does a stem cell know that it is in a certain region? How does it read the body's "GPS" signals? And how is this information used to control the creation of specific nerve cells?
In order to address these issues, the LiU researchers studied a specific stem cell in the nervous system of the fruit fly. It is present in all segments of the nervous system, but it is only in the thorax, or chest region, that it produces a certain type of nerve cell. To investigate why this cell type is not created in the stomach or head region they manipulated the Hox genes' activity in the fly embryo.
It turned out that the Hox genes in the stomach region stop stem cells from splitting before the specific cells are produced. In contrast, the specific nerve cells are actually produced in the head region, but the Hox genes turn them into another, unknown, type of cell. Hox genes can thus exert their influence both on the genes that control stem cell division behaviour and on the genes that control the type of nerve cells that are created.
Well "Infuse Day" Monday is Day ZERO and in about 9-11 days later these big beautiful Stem Cell babies should hit pay-dirt...a long uphill journey then these babies are gonna pop to their senses and bring my white cell counts to glory!!!! Yay.!!!!!!
And like last week, the journey begins every day at O Dark 5am.......
See you all soon, smile, play, pray, and give someone a big hello......Love you bzers....
Thursday, April 7, 2011
Keep your friends close but your enemies closer.
I am a fan of Sun Tzu and the art of war...
Often quoted from, Sun Tzu (Quotations from translations of the book The Art of War (6th century BC)) "It is said that if you know your enemies and know yourself, you will not be imperiled in a hundred battles; if you do not know your enemies but do know yourself, you will win one and lose one; if you do not know your enemies nor yourself, you will be imperiled in every single battle."
I have learned in this battle with NHL Mantle Cell that knowing what I was up against and knowing what I was capable of dealing with were sometimes not in sync....this is why my close friend chain (Bob, Bill, Diane, Jerry, Greg, Jim W., Pascal, CM, Cathy Dustin, and Juan, Donna and Erik, and Stephen C, allowed me to get to know myself better through their encouragement, knowledge and good old conversation. Health battles are often won simply with the will to win...it's that easy.
Sun Tzu is often mis-attributed the words of the writers of the Godfather (2).
Keep your friends close, and your enemies closer.This has often been attributed to Sun Tzu and sometimes to Niccolò Machiavelli or Petrarch, but there are no published sources yet found which predate its use by "Michael Corleone" in The Godfather Part II (1974), written by Mario Puzo & Francis Ford Coppola: My father taught me many things here — he taught me in this room. He taught me — keep your friends close but your enemies closer.
I like this quote much better because it emphasizes friends as the key to winning and to never underestimate your enemy because they are constantly changing direction. This is why I am going through what you all think is a horrible scenario. It isn't! Why? Because I have a close group of medical professionals (medical friends) that have kept me close to me my enemy for many years now. They include Dr. Arnel Pallera, his team at West Clinic, and currently Lori Lee, Lori Draughon, and Brigitt Green , my stem cell team at Baptist East.
Enough.......
As we get closer to Monday, the question of the day....asked over and over by my caretaker this week and friend Bob Richards...."how long do you thaw out the stem cells before you insert them in Robert's body? My concern is more simple....when do they wake up and turn on the GPS....
The answer is forthcoming.......
Often quoted from, Sun Tzu (Quotations from translations of the book The Art of War (6th century BC)) "It is said that if you know your enemies and know yourself, you will not be imperiled in a hundred battles; if you do not know your enemies but do know yourself, you will win one and lose one; if you do not know your enemies nor yourself, you will be imperiled in every single battle."
I have learned in this battle with NHL Mantle Cell that knowing what I was up against and knowing what I was capable of dealing with were sometimes not in sync....this is why my close friend chain (Bob, Bill, Diane, Jerry, Greg, Jim W., Pascal, CM, Cathy Dustin, and Juan, Donna and Erik, and Stephen C, allowed me to get to know myself better through their encouragement, knowledge and good old conversation. Health battles are often won simply with the will to win...it's that easy.
Sun Tzu is often mis-attributed the words of the writers of the Godfather (2).
Keep your friends close, and your enemies closer.This has often been attributed to Sun Tzu and sometimes to Niccolò Machiavelli or Petrarch, but there are no published sources yet found which predate its use by "Michael Corleone" in The Godfather Part II (1974), written by Mario Puzo & Francis Ford Coppola: My father taught me many things here — he taught me in this room. He taught me — keep your friends close but your enemies closer.
I like this quote much better because it emphasizes friends as the key to winning and to never underestimate your enemy because they are constantly changing direction. This is why I am going through what you all think is a horrible scenario. It isn't! Why? Because I have a close group of medical professionals (medical friends) that have kept me close to me my enemy for many years now. They include Dr. Arnel Pallera, his team at West Clinic, and currently Lori Lee, Lori Draughon, and Brigitt Green , my stem cell team at Baptist East.
Enough.......
As we get closer to Monday, the question of the day....asked over and over by my caretaker this week and friend Bob Richards...."how long do you thaw out the stem cells before you insert them in Robert's body? My concern is more simple....when do they wake up and turn on the GPS....
The answer is forthcoming.......
Wednesday, April 6, 2011
Life for me is a small math problem.
Hello again....
No I didn't miss a post on purpose. Day 2-5 (Tues-Friday) are basically the same.
Ara-C, Cytosar-U commonly called CYTARABINE, and a "wonderful"great drug called VP-a6, Etopophos, commonly called ETOPOSIDE. One's a push----given by pushing the chemical through the tubing into my veins and the other is a drip....
I was thinking that the names would be easier to remember if they named all chemos as Poison #1, #2, etc...but I'm in Marketing and I should appreciate the Branding effect on my reasoning that they are "good".
And since I can't use that comedy routine again, I can report everything is still going well, some fatigue and misery (my own) sleeping with overnight battery infusion pumps and tubing and trying not to mess them up or pull them out changing positions. Wish I could take this picture----this is funny!!!!
Ok so what about the math problem?
When they took my healthy baby stem cells from me we were shooting for collecting about 5 million. I was very lucky, some folks take up to a week to do this. I took one day to get to 5.5 million. Then they were divided into 4 parts, frozen in liquid nitrogen (if you are up on this - kinda like Ted Williams Head at death (read to the end). So on Monday, they have to defrost enough to cover the infusion of about 2.4 million and hold the rest in reserve. If this infusion fails I can't use the others for another infusion (I'm thinkin I'm not wanting another one so lets say this one is Definitely going to work K!)-I would need to get donor cells, so the reserve is for (For my computer technical audience) to get me back to RESTORE if both infusions fail.
So whats the answer for Monday. (hint: more is not better)_____________
See you soon -smile, and most of all stay healthy and enjoy life!!
Thanks to all my students (for understanding my plight), my colleagues for their help as always their concern, special kudos for Neil, Barry, Howard, and Duff. Thanks to my My Outreach and DL friends and staff everywhere-Locally Lynn and Wanda- and too many names to mention. Also my followers and comment folks....I enjoy reading them. And thanks to Jess and Sherri for making my "procedure"part of their life through their contributions of hard work to have folks recognize my disease and fight for its cure.
And to all my lovely children Brit, Ty, and Jess, and surrogate child KT -focus on your lives and goals, I'm not going anywhere soon----and Bob (who fills in graciously with just a call to arms) and soon my sister Chris (ready for pasta, eggplant, and meatballs....yay!), and to those that wish they could do more for me (I promise I will give you the opportunity)-My love goes out to you.
And Ruth and Wayne for their encouragement and "new drainage system" and hopefully for some great entertainment when it is installed. And Tomatoes and love are only a telephone call away! Tam, Don Andrea, Rich, Radical, the entire Cleary clan, and our wonderful caring family matriarch Patricia (you hold us together and we thank you....)
AND ESPECIALLY (DYWTMM).......TRACY- my forever wife, caregiver, com padre, baseball junkie, forgiver of my faults, follower of our dreams. Tracy :) Mexico is only a short flight away!
No I didn't miss a post on purpose. Day 2-5 (Tues-Friday) are basically the same.
Ara-C, Cytosar-U commonly called CYTARABINE, and a "wonderful"great drug called VP-a6, Etopophos, commonly called ETOPOSIDE. One's a push----given by pushing the chemical through the tubing into my veins and the other is a drip....
I was thinking that the names would be easier to remember if they named all chemos as Poison #1, #2, etc...but I'm in Marketing and I should appreciate the Branding effect on my reasoning that they are "good".
And since I can't use that comedy routine again, I can report everything is still going well, some fatigue and misery (my own) sleeping with overnight battery infusion pumps and tubing and trying not to mess them up or pull them out changing positions. Wish I could take this picture----this is funny!!!!
Ok so what about the math problem?
When they took my healthy baby stem cells from me we were shooting for collecting about 5 million. I was very lucky, some folks take up to a week to do this. I took one day to get to 5.5 million. Then they were divided into 4 parts, frozen in liquid nitrogen (if you are up on this - kinda like Ted Williams Head at death (read to the end). So on Monday, they have to defrost enough to cover the infusion of about 2.4 million and hold the rest in reserve. If this infusion fails I can't use the others for another infusion (I'm thinkin I'm not wanting another one so lets say this one is Definitely going to work K!)-I would need to get donor cells, so the reserve is for (For my computer technical audience) to get me back to RESTORE if both infusions fail.
So whats the answer for Monday. (hint: more is not better)_____________
See you soon -smile, and most of all stay healthy and enjoy life!!
Thanks to all my students (for understanding my plight), my colleagues for their help as always their concern, special kudos for Neil, Barry, Howard, and Duff. Thanks to my My Outreach and DL friends and staff everywhere-Locally Lynn and Wanda- and too many names to mention. Also my followers and comment folks....I enjoy reading them. And thanks to Jess and Sherri for making my "procedure"part of their life through their contributions of hard work to have folks recognize my disease and fight for its cure.
And to all my lovely children Brit, Ty, and Jess, and surrogate child KT -focus on your lives and goals, I'm not going anywhere soon----and Bob (who fills in graciously with just a call to arms) and soon my sister Chris (ready for pasta, eggplant, and meatballs....yay!), and to those that wish they could do more for me (I promise I will give you the opportunity)-My love goes out to you.
And Ruth and Wayne for their encouragement and "new drainage system" and hopefully for some great entertainment when it is installed. And Tomatoes and love are only a telephone call away! Tam, Don Andrea, Rich, Radical, the entire Cleary clan, and our wonderful caring family matriarch Patricia (you hold us together and we thank you....)
AND ESPECIALLY (DYWTMM).......TRACY- my forever wife, caregiver, com padre, baseball junkie, forgiver of my faults, follower of our dreams. Tracy :) Mexico is only a short flight away!
Monday, April 4, 2011
Day 1: Autologous Stem Cell Transplant or It's not a margarita? or Why do the chemicals have to sound like enemies of Godzilla?
OK...so what exactly is my fragmented psyche trying to say?
Catch these names.... Day 1: Bis-chloro-nitro-sour-ea, Chemical day one....didn't get nervous until I saw the nitro part....maybe there a job in for me as NITRO MAN----Naw I'm too tired.
The sour part was cool---maybe it really is a cocktail..after all it did come wrapped in a brown bag...Naw...too metallic. Actually gave me a taste in my mouth like its Brand name, CAR-MUST-INE...I had a Chevy that smelled like this......Oh wait a minute, its base liquid is alcohol...what?
OK hows this ---the Brand Name is BCNU. I believe they name Bmers and Mercedes cars with letters or maybe its a transformer. Naw!!!
Wait.....I think I've solved it, its Godzilla's old nemesis Mothra's cousin-Chloro-sour-e-a, for sure......
Back to earth now.
Day one started at 9:00am at Baptist Memorial Stem cell Unit, Memphis Tn. It began with a taste in drip form of some units of IV solution to hydrate, an anti-allergic reaction drip, and a smattering of anti-nausea medicine, then 2/1/2 hours of Nitro Man.
Verdict: OK, time out-2:15 pm. Left with two battery infusion pumps connected to IV, and anti-nausea medication, residing in a carry bag (actually I put it in my backpack) ...connected to my portacath.....and heavy. YOU carry this around and sleep with it...OUCH!!!!!! I had some headache, and some fatigue and some chemo brain from the steroids (I forgot to mention this). Oh no and now one of the pumps is beeping, trying to tell me that I will be aggravated and up all night....oh no!!!! and I can't turn it off........pull the batteries. Goodnight!
Tune in tomorrow for CYTARABINE, and ETOPOSIDE.
Till then...smiles.
Catch these names.... Day 1: Bis-chloro-nitro-sour-ea, Chemical day one....didn't get nervous until I saw the nitro part....maybe there a job in for me as NITRO MAN----Naw I'm too tired.
The sour part was cool---maybe it really is a cocktail..after all it did come wrapped in a brown bag...Naw...too metallic. Actually gave me a taste in my mouth like its Brand name, CAR-MUST-INE...I had a Chevy that smelled like this......Oh wait a minute, its base liquid is alcohol...what?
OK hows this ---the Brand Name is BCNU. I believe they name Bmers and Mercedes cars with letters or maybe its a transformer. Naw!!!
Wait.....I think I've solved it, its Godzilla's old nemesis Mothra's cousin-Chloro-sour-e-a, for sure......
Back to earth now.
Day one started at 9:00am at Baptist Memorial Stem cell Unit, Memphis Tn. It began with a taste in drip form of some units of IV solution to hydrate, an anti-allergic reaction drip, and a smattering of anti-nausea medicine, then 2/1/2 hours of Nitro Man.
Verdict: OK, time out-2:15 pm. Left with two battery infusion pumps connected to IV, and anti-nausea medication, residing in a carry bag (actually I put it in my backpack) ...connected to my portacath.....and heavy. YOU carry this around and sleep with it...OUCH!!!!!! I had some headache, and some fatigue and some chemo brain from the steroids (I forgot to mention this). Oh no and now one of the pumps is beeping, trying to tell me that I will be aggravated and up all night....oh no!!!! and I can't turn it off........pull the batteries. Goodnight!
Tune in tomorrow for CYTARABINE, and ETOPOSIDE.
Till then...smiles.
Saturday, April 2, 2011
Do Baby Stem Cells have a GPS?
In a few days they will put my baby stem cells into my bloodstream and they need to find their way to my bone marrow....sounds Disneyish, science fiction...no its true!!!! Its called a bone marrow transplant or a stem cell transplant.
So now I want to tell you exciting news...somewhat terrifying and I have great trepidation about the event and have put it off for a while....however now I must deal with it.
I have been cancer free for a while after they removed the polyps in my colon (in Dec)and chemo'd me with great tenacity for four months. During this "free" time, they took my stem cells (5.5 million to be exact) -not without some interesting stories-like almost bleeding out in bed from a dislodged Vascat --but that's another story of many stories during this chemo period.
After much soul searching on my part, my physician (who is pushing the time frame) and I have decided to begin the transplant process this Monday-April 4th. I will get six days of very very intense chemo, then as my numbers go down (white cell count to 0), I will probably receive the stem cells sometime Monday, of the next week and hope they have a GPS to find their way into my bone marrow.
It will be an interesting recovery period where they tell me I can't teach from home----so, they tell told me this many times and I beat their odds and did it. This time may be different-I don't like the Ominous overtones...so I will see. If I cannot teach from home (yes this procedure is all outpatient-another story of trepidation) my classes will be covered by my colleagues when I cannot teach...Thanks for (to coin an often abused cliche) Cosenza Nation-love you guys. I'm glad its close to the end of the semester.
I should be functioning (Don't know what this means yet) well (my prognosis) -and I have been right before, by the end of April or Beginning of May - IF all goes well. I should be full functional in a few months (again my positive attitude).
I will try hard to keep anyone interested in the process or my recovery by writing daily in this blog...so come back often.
So please pray it does.
PS: Notice to all.....You might see some gibberish in the blog-because of chemo brain....so bear with me...look for the essence!!!
So now I want to tell you exciting news...somewhat terrifying and I have great trepidation about the event and have put it off for a while....however now I must deal with it.
I have been cancer free for a while after they removed the polyps in my colon (in Dec)and chemo'd me with great tenacity for four months. During this "free" time, they took my stem cells (5.5 million to be exact) -not without some interesting stories-like almost bleeding out in bed from a dislodged Vascat --but that's another story of many stories during this chemo period.
After much soul searching on my part, my physician (who is pushing the time frame) and I have decided to begin the transplant process this Monday-April 4th. I will get six days of very very intense chemo, then as my numbers go down (white cell count to 0), I will probably receive the stem cells sometime Monday, of the next week and hope they have a GPS to find their way into my bone marrow.
It will be an interesting recovery period where they tell me I can't teach from home----so, they tell told me this many times and I beat their odds and did it. This time may be different-I don't like the Ominous overtones...so I will see. If I cannot teach from home (yes this procedure is all outpatient-another story of trepidation) my classes will be covered by my colleagues when I cannot teach...Thanks for (to coin an often abused cliche) Cosenza Nation-love you guys. I'm glad its close to the end of the semester.
I should be functioning (Don't know what this means yet) well (my prognosis) -and I have been right before, by the end of April or Beginning of May - IF all goes well. I should be full functional in a few months (again my positive attitude).
I will try hard to keep anyone interested in the process or my recovery by writing daily in this blog...so come back often.
So please pray it does.
PS: Notice to all.....You might see some gibberish in the blog-because of chemo brain....so bear with me...look for the essence!!!
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