Notes for New Readers: Since I handed out about 35 business cards with my blog address stamped on the back at the TNOYS Statewide Conference this week, I anticipate a number of first-timers visiting here. For you all, here is a map of this blog.
Along the black RIGHT SIDEBAR you will notice there are various informational LINKS to websites about kidney-related topics.
Below the informational links are the PREVIOUS POSTS links for the latest month. Generally I write one post each time I go for dialysis and it starts with my experience in the dialysis center and then, many times expands in whatever way my mind is going at the time. Since I go for dialysis three times a week on TTS there are usually three posts per week. I aim for ironic, humorous, thought-provoking, or at least interesting anecdotes related to my experiences.
Below the Previous Posts are the ARCHIVES. These are previous posts by month. I started this blog in April 2006, when I started dialysis. If you want to read about my introduction to dialysis and the experiences of my first session, you need to click on April and page to the bottom, since posts on blogs are always listed with the most recent date first. A basic review of posts by month is as follows:
April ~ In which Jack experiences dialysis for the first times; learns about how they measure the dialysis (urea reduction); has infiltration bruising, introduces my Doctor Moritz, the Kidney Guru; and explains my general theory of life.
May ~ In which Jack experiences more dialysis; learns about watching and lowering phosphorous; writes various personality studies of my dialysis colleagues and the staff; reports my brief history of dealing with the medical establishment; writes about AV fistulas, morphic fields, and systems thoughts; explains parathyroid glands; and notes about going to the early shift.
June ~ In which Jack Integrates dialysis with the Kerrville Folk Festival; discusses transplant possibilities; is the victim of a critical incident at the center (and the aftermath); reports more about kidney donations in the news; and posts some thoughts on driving north from Laredo.
July ~ In which Jack (and good friend Hans) write about the Ethics of Transplants; writes more about phosphorous; takes a vacation to Dallas; describes being a bionic man; stops eating enchiladas; discusses “Hallucinations” and muscle cramping during dialysis; and compares Dr. Moritz to Captain Picard when he was assimilated by the Borg.
August ~ In which Jack reads summer novels; talks to his kidney cysts in a TNOYS training; gets bored with the whole dialysis scene; reports on his dad’s new book; reports on gas mileage and pickup truck tailgates; and worries about his phosphorous getting really high.
For new readers; a Glossary of terms:
El Milagro (the miracle) is the center where I receive my dialysis sessions.
Cannulate or canoodle is the process of getting stuck with a needle the size of a toothpick so the blood can be filtered by the dialysis machine. (Also called poked or stuck or jabbed)
Staff at El Milagro are usually identified by name and function, i.e. Jennifer the Dietician.
Notes includes my beginning weight in kilograms and my ending weight, since they measure the dialysis in body weight loss during treatment. My “dry weight” (perfect weight they aim for) is 71.5 Kg, or 157 lbs.
Moritz is my nephrologist, Dr. Charles Moritz, who is part owner of El Milagro and a partner in Austin Kidney Associates.
Comments are made by you, the reader, by clicking "comment" at the bottom of the post. To be published, your comments must be approved by me. Basically, I do not publish "get well" or acknowledgement comments, although you can write them to me for their curative purposes. I do publish comments with reflections about your personal experiences, your thoughtful responses to my ramblings, contributions or critiques about my writings, significant or thought-provoking ideas, or various haiku that my friend, Cecilia, writes. If you don't want your comment published, let me know and I will respect your wishes.
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El Milagro: Got in today at 11:30 am. Phyllis the Nurse is back from 9 days of vacation, seeming very up-beat and happy. Diane cannulated me and is still doing much better at sticking me. The woman who says "help" (see #11 in May) is right in front of me today. Her name is Sandra and she curls up in a little fetal-like ball in her chair, with her feet sticking out over the chair¹s arm. She usually puts her quilt over her head when she is saying "help". According to staff, she used to be just like all the regulars, but over the years she has sunken into this state. When the EMS folks come to pick her up today, one of them asks her how she is doing, and she says, as normal as can be, "Okay". Then, a few seconds later, it's another "help".
Today I am watching Tiger Woods getting 4 bogies in a row! That is very unusual and yet, by the end of the day, Tiger has come back and is in second place. Tiger¹s confidence and commitment to excellence is a model for the rest of us! When you screw up or something bad happens, you simply (I admit it's not so simple sometimes) shake off any negativity, walk to the next doorway, step through it, and again focus on doing your best. You can¹t live in the past and you can¹t predict the future. So, all you can really do is be in the present, live fully, do your best, and laugh a lot.
Yesterday, as a closing for our conference, John Irvin reminded us that Groucho Marx said, "A clown is like aspirin, only he works twice as fast." See more about John at www.johnirvin.com .
Notes: In at 72.7 Kg. and out at 70.9 Kg.
If you want to read a new article on the Good Samaritan beharior of giving kidneys to strangers, read:
CNN.com (June 5, 2006) Would you give your kidney to a stranger? The ethics and hazards surrounding living donors. Retrieved online August 25th from http://www.cnn.com/2006/HEALTH/06/01/living.donors/index.html
8/26/06
8/25/06
46) Sleep Session
August 24, 2006
Thursday
El Milagro: When I got here today I immediately noticed that Kim the Tech was back from having her baby (Kim was the first person to cannulated me when I started dialysis). Marilyn the Social Worker said they got my complete physical from the Transplant Clinic and I am all set to travel wherever I want. Carol cannulated me today and I almost immediately fell asleep. I must be very tired from being at a conference since Tuesday. I woke up at about 6:30 and as Diane was prepping me for de-cannulation, she reported that Dr. Moritz came by to see me but the staff wouldn’t let him wake me up. I replied, “Thanks, I guess”.
Today, in an over heard conversation I found out that each patient’s personal dialysizer is used about 50 times with careful cleaning and sanitizing between each use.
Notes: In at 74.2 Kg. and out at 71.7 Kg.
Thursday
El Milagro: When I got here today I immediately noticed that Kim the Tech was back from having her baby (Kim was the first person to cannulated me when I started dialysis). Marilyn the Social Worker said they got my complete physical from the Transplant Clinic and I am all set to travel wherever I want. Carol cannulated me today and I almost immediately fell asleep. I must be very tired from being at a conference since Tuesday. I woke up at about 6:30 and as Diane was prepping me for de-cannulation, she reported that Dr. Moritz came by to see me but the staff wouldn’t let him wake me up. I replied, “Thanks, I guess”.
Today, in an over heard conversation I found out that each patient’s personal dialysizer is used about 50 times with careful cleaning and sanitizing between each use.
Notes: In at 74.2 Kg. and out at 71.7 Kg.
45) Adding Machines
August 22, 2006
Tuesday
El Milagro: Long conversation with Herman today about the new computers that I see between each Dialysis Machine. Herman reports that they are moving towards a paper-less system. Right now, each dialysis station has an associated clipboard with a piece of paper which is used to gather the patient’s data throughout their session. Staff write the beginning weight, BP, calculated weight loss for the session and then add info whenever they come by to check on the person. By the end of the session there is full piece of paper with lots of numbers and info on it. Then, staff have to type it all into their computer. With the new system, stage 1, the staff will data enter all the patient’s info directly into a computer by the station. By stage 2, the dialysis machine will talk directly to the computer and the staff writing or typing will be out of the equation.
Note: In at 72.7 Kg. and out at 71.1 Kg.
Today, before coming here, I gave a number of people at my conference this address, so we can expect more readers.
Tuesday
El Milagro: Long conversation with Herman today about the new computers that I see between each Dialysis Machine. Herman reports that they are moving towards a paper-less system. Right now, each dialysis station has an associated clipboard with a piece of paper which is used to gather the patient’s data throughout their session. Staff write the beginning weight, BP, calculated weight loss for the session and then add info whenever they come by to check on the person. By the end of the session there is full piece of paper with lots of numbers and info on it. Then, staff have to type it all into their computer. With the new system, stage 1, the staff will data enter all the patient’s info directly into a computer by the station. By stage 2, the dialysis machine will talk directly to the computer and the staff writing or typing will be out of the equation.
Note: In at 72.7 Kg. and out at 71.1 Kg.
Today, before coming here, I gave a number of people at my conference this address, so we can expect more readers.
8/20/06
44) Of Urine and Tailgates
August 19, 2006
Saturday
Morning: Call to Herman; they are completely full today, so I have to come in at my regular time. I tell him I’ve got a party to go to and if there is any way to get me in early, it would be great. He says, “Everyone will be here. God forgive, if anyone has to go to the hospital is the only way you might get in early.” Well, we don’t want that. So I call back at 11:30 or so from the Bat Mitzvah services at the “J”, and Ron says I can come in at 2:30, half an hour early.
El Milagro: Debbie canoodled me today and we discussed if she had ever done it to me before. Debbie and Rosie are the techs who were so excited that I was going to come to the early shift, cause I was an easy patient. I think I’ve posted before that Debbie and Rosie are the ‘Fun Girls’; always laughing, joking, and generally making all the patients smile. Today, Debbie says she has been working since 3:30 am this morning, and then she said, “I don’t know if I can do a good job sticking you”, to which I reply, “Believe me; I’ll let you know if you aren’t doing a good job.” So, we are just yaking away about something and somehow get to a point where she says, “Good thing it’s not the old days. You know how doctors used to assess for diabetes? The patient would urinate in a cup and the doctor would smell or sometimes even taste the pee. If it smelled or tasted sweet, they would know the person had diabetes.” So I say, “Yuck! Where did you learn that?”. “In physiology class. Really.” By now I’m cannulated and I’m stuck visualizing Moritz sipping urine from a shot glass and saying, “Yup. You got a tiger by the tail, boy!” . (That’s the same thing he said to me when he first talked to me and Liz about my PKD.)
I read the new Time and watch Mythbusters* experiment with the old cartoon image of the gun exploding like a peeled banana when someone sticks their finger in the barrel. It’s a myth. Herman stops by to give me my second Hep B vacine in a series of three.
Even more important to most of us Texans, these guys showed that we can get better gas mileage in our pick-ups with the tailgate UP. That’s right guys: those of you who drive around with your tailgate down, thinking it gets you better mileage are WRONG and stupid! Adam and Jamie filled up two Ford F-100s and drove them at the same speed and the one with the tail gate UP went 30 miles further. They later showed with a model truck in a water tank that with the tailgate up, air cycles tightly in the bed and causes the major air stream to flow right over it. The airflow in a truck with the tailgate down catches and pushes down on the tailgate. To see this episode #43, entitled “Seasickness – Kill or Cure” watch Discovery Channel on September 20th.
MythBusters is described in Wikopedia as "Jackass meets Mr. Wizard."** As I’m watching, I wonder what kinds of myths there could be related to kidney disease or kidney transplants that Adam and Jamie might want to explore. Do polycsystic kidneys really get as big as basketballs? Does a woman with a transplanted kidney from a man drink more beer? Do people who get kidney transplants form 3rd world countries get sympathy pains? These are myths I just dreamed up, but maybe there are some real myths out there. What would they be?
So, I get done with my dialysis at about 6:30 and shoot out to The Salt Lick*** in Driftwood for Alena’s Bat Mitzvah party. Welcome to the adult world, Alena! And, that’s the way it is today.
Notes: In at 73.9 Kg. and out at 71.2 Kg.
* MythBusters Fan Site (2006) Retrieved online August 20th from http://dsc.discovery.com/fansites/mythbusters/mythbusters.html
** MythBusters (2006) Wikopedia: The free encyclopedia. Retrieved online August 20th from http://en.wikipedia.org/wiki/MythBusters
*** The Salt Lick (2006) Retrieved online August 20th from http://www.saltlickbbq.com/
Saturday
Morning: Call to Herman; they are completely full today, so I have to come in at my regular time. I tell him I’ve got a party to go to and if there is any way to get me in early, it would be great. He says, “Everyone will be here. God forgive, if anyone has to go to the hospital is the only way you might get in early.” Well, we don’t want that. So I call back at 11:30 or so from the Bat Mitzvah services at the “J”, and Ron says I can come in at 2:30, half an hour early.
El Milagro: Debbie canoodled me today and we discussed if she had ever done it to me before. Debbie and Rosie are the techs who were so excited that I was going to come to the early shift, cause I was an easy patient. I think I’ve posted before that Debbie and Rosie are the ‘Fun Girls’; always laughing, joking, and generally making all the patients smile. Today, Debbie says she has been working since 3:30 am this morning, and then she said, “I don’t know if I can do a good job sticking you”, to which I reply, “Believe me; I’ll let you know if you aren’t doing a good job.” So, we are just yaking away about something and somehow get to a point where she says, “Good thing it’s not the old days. You know how doctors used to assess for diabetes? The patient would urinate in a cup and the doctor would smell or sometimes even taste the pee. If it smelled or tasted sweet, they would know the person had diabetes.” So I say, “Yuck! Where did you learn that?”. “In physiology class. Really.” By now I’m cannulated and I’m stuck visualizing Moritz sipping urine from a shot glass and saying, “Yup. You got a tiger by the tail, boy!” . (That’s the same thing he said to me when he first talked to me and Liz about my PKD.)
I read the new Time and watch Mythbusters* experiment with the old cartoon image of the gun exploding like a peeled banana when someone sticks their finger in the barrel. It’s a myth. Herman stops by to give me my second Hep B vacine in a series of three.
Even more important to most of us Texans, these guys showed that we can get better gas mileage in our pick-ups with the tailgate UP. That’s right guys: those of you who drive around with your tailgate down, thinking it gets you better mileage are WRONG and stupid! Adam and Jamie filled up two Ford F-100s and drove them at the same speed and the one with the tail gate UP went 30 miles further. They later showed with a model truck in a water tank that with the tailgate up, air cycles tightly in the bed and causes the major air stream to flow right over it. The airflow in a truck with the tailgate down catches and pushes down on the tailgate. To see this episode #43, entitled “Seasickness – Kill or Cure” watch Discovery Channel on September 20th.
MythBusters is described in Wikopedia as "Jackass meets Mr. Wizard."** As I’m watching, I wonder what kinds of myths there could be related to kidney disease or kidney transplants that Adam and Jamie might want to explore. Do polycsystic kidneys really get as big as basketballs? Does a woman with a transplanted kidney from a man drink more beer? Do people who get kidney transplants form 3rd world countries get sympathy pains? These are myths I just dreamed up, but maybe there are some real myths out there. What would they be?
So, I get done with my dialysis at about 6:30 and shoot out to The Salt Lick*** in Driftwood for Alena’s Bat Mitzvah party. Welcome to the adult world, Alena! And, that’s the way it is today.
Notes: In at 73.9 Kg. and out at 71.2 Kg.
* MythBusters Fan Site (2006) Retrieved online August 20th from http://dsc.discovery.com/fansites/mythbusters/mythbusters.html
** MythBusters (2006) Wikopedia: The free encyclopedia. Retrieved online August 20th from http://en.wikipedia.org/wiki/MythBusters
*** The Salt Lick (2006) Retrieved online August 20th from http://www.saltlickbbq.com/
43) Phosphorous High
August 17, 2006
Thursday
El Milagro: Carol cannulated me again today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I finished my dad’s new book and am really happy he wrote it. I am reminded of a time, some years before my mom died, when, for her birthday or some other gift day, I (or my brother and I) gave her one of those chart-your-life books where one fills in the blanks about their life; their early memories, favorites, etc. My mom was less than thrilled about the gift (my hallucination) and made some sort of verbal response like, “I am way too young to be thinking about what to write for my legacy”. I never saw or heard anything about that gift afterwards. So, a special thanks goes out to my dad for going way beyond the confines of that little book we gave my mom.
And as I finish his book, and I am now getting used to my practice writing on an almost daily basic, I am becoming more and more committed to the idea of adding my own edition to the two Nowicki books that already exist. I picture the day when there are three volumes sitting on the shelf: Kay: Letters & Memories, Kay and John, and something like, Jack, bound in the same library green hard back and basically the same size, typeface, etc. I am sure it would take me at least 6 years to get mine done too. There would be less pictures but there would be way more text to filter through to set up a chronological + relational story. Just dreaming now… we’ll see if I can materialize it.
Jennifer the Dietician rolls up to talk to me about my most recent blood work: my phosphorous is higher than ever before! In the last month and a half it has gone from 6.8 to 7.0 to 8.2! A good level of phosphorous for me would be 3.5 to 5.5. Clearly, the enchilada boycott is NOT working! Jennifer thinks that maybe my parathyroid gland is getting the wrong message and is causing “too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy”* So, she is having Ron order another binder to add: Phoslo. I will take 3 of these with the 5 Renagel at each meal. In ending, she encourages me to give myself an affirmation about my bones: something like saying to myself, "My bones are healthy". I would rather say, "My kidneys are disolving their cysts.", but she has a good point.
Amanda (see Post #4) is here today and I said “hi” and gave her my blog address. She said she was going to write one but somehow never did, so I hope she enjoys mine. She is still on MWF, but came in today because she had to work all day yesterday and missed her Wednesday session.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Phosphorous and chronic kidney disease (2005) Davita.com. Retrieved June 28th from http://www.davita.com/articles/diet_nutrition/?id=478
Thursday
El Milagro: Carol cannulated me again today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I finished my dad’s new book and am really happy he wrote it. I am reminded of a time, some years before my mom died, when, for her birthday or some other gift day, I (or my brother and I) gave her one of those chart-your-life books where one fills in the blanks about their life; their early memories, favorites, etc. My mom was less than thrilled about the gift (my hallucination) and made some sort of verbal response like, “I am way too young to be thinking about what to write for my legacy”. I never saw or heard anything about that gift afterwards. So, a special thanks goes out to my dad for going way beyond the confines of that little book we gave my mom.
And as I finish his book, and I am now getting used to my practice writing on an almost daily basic, I am becoming more and more committed to the idea of adding my own edition to the two Nowicki books that already exist. I picture the day when there are three volumes sitting on the shelf: Kay: Letters & Memories, Kay and John, and something like, Jack, bound in the same library green hard back and basically the same size, typeface, etc. I am sure it would take me at least 6 years to get mine done too. There would be less pictures but there would be way more text to filter through to set up a chronological + relational story. Just dreaming now… we’ll see if I can materialize it.
Jennifer the Dietician rolls up to talk to me about my most recent blood work: my phosphorous is higher than ever before! In the last month and a half it has gone from 6.8 to 7.0 to 8.2! A good level of phosphorous for me would be 3.5 to 5.5. Clearly, the enchilada boycott is NOT working! Jennifer thinks that maybe my parathyroid gland is getting the wrong message and is causing “too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy”* So, she is having Ron order another binder to add: Phoslo. I will take 3 of these with the 5 Renagel at each meal. In ending, she encourages me to give myself an affirmation about my bones: something like saying to myself, "My bones are healthy". I would rather say, "My kidneys are disolving their cysts.", but she has a good point.
Amanda (see Post #4) is here today and I said “hi” and gave her my blog address. She said she was going to write one but somehow never did, so I hope she enjoys mine. She is still on MWF, but came in today because she had to work all day yesterday and missed her Wednesday session.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Phosphorous and chronic kidney disease (2005) Davita.com. Retrieved June 28th from http://www.davita.com/articles/diet_nutrition/?id=478
8/16/06
42) Another Day Another Dialysis
August 15, 2006
Tuesday
El Milagro: Carol cannulated me today: another smooth, professional stick. I am reviewing an article for the Children in Schools Journal: a study of protective factors for Hispanic youth in schools. It is well written and shows some important variables to consider in increasing youth’s resiliency so I am suggesting they accept it for publication.
Also am continuing to read my dad’s book and marveling at the job he did in producing it. Jennifer the Dietician comes up to get me to sign off on our plan and I report that I am still enchilada-free for the time being. She says, “I hope that’s the ticket to your decrease in phosphorus and we will see the results this Thursday.”
I’m thinking that right now that Johnny is in Oakland waiting to board his flight to Honolulu. I imagine him walking around the airport looking for the right gate and thinking about what he can eat that is cheap. He arrives in Hawaii at 8 pm their time; 1 am our time.
Notes: In at 74.3 Kg. and out at 72.1 Kg.
Tuesday
El Milagro: Carol cannulated me today: another smooth, professional stick. I am reviewing an article for the Children in Schools Journal: a study of protective factors for Hispanic youth in schools. It is well written and shows some important variables to consider in increasing youth’s resiliency so I am suggesting they accept it for publication.
Also am continuing to read my dad’s book and marveling at the job he did in producing it. Jennifer the Dietician comes up to get me to sign off on our plan and I report that I am still enchilada-free for the time being. She says, “I hope that’s the ticket to your decrease in phosphorus and we will see the results this Thursday.”
I’m thinking that right now that Johnny is in Oakland waiting to board his flight to Honolulu. I imagine him walking around the airport looking for the right gate and thinking about what he can eat that is cheap. He arrives in Hawaii at 8 pm their time; 1 am our time.
Notes: In at 74.3 Kg. and out at 72.1 Kg.
8/14/06
41) The Book Report
August 12, 2006
Saturday
On Friday afternoon my friend Carol at Work asked about Thursday’s dialysis; saying, “Were you canoodled?” and I am thinking ‘canoodled’ is an appropriate alternative word for cannulate.
Morning: I finished Fluke yesterday evening. There was some serendipity in the finishing. The main character is taken into a living organism 650 feet deep in the southern ocean off the coast of Chile and describes the interior similarly to my description of the inside of my right kidney in Post # 38 (August). His description is more writerly: “…a vibrant red chamber that was pulsing with light and glistening with moisture as the walls appeared to breathe. Now this looked like a living thing -- the inside of a living thing.” Of course, as I was reading along, I was thinking of the comparison with my interior kidney views, adding some of the visuals to my own visual characterizations.
El Milagro: Matt canoodled me today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I am reading my dad’s new book, John & Kay. My dad is an 83 year old somewhat cantankerous retired military officer who has published two books for our family. The new book, written over the last three** years, is about his recollections of his “chronological” life story from his childhood years through his retirement. Much of it tracks his military career during the occupation of Germany after WW II, his post-war military assignments related to guided missile and RADAR development, and the connected, noteworthy events in our family history. As I read his recollections, I am amazed at my dad’s memory for dates, places, and events. I wonder, did he make notes throughout his life, or does he just have an amazingly organized file cabinet?
Also, as I read the book, it jogs my memory of various scenes, conversations and stories told by my mom, and I am even learning a few things about my parents’ lives that I didn’t formerly know. And, as I read along, there are times I wonder about the story behind the story. The details are there but I want to know what they were thinking and feeling about the events in their lives? What was the experience like? What music was playing when they were driving from Detroit to Lawrence? I want the scene developed to include the mood and the hyperbole. It seems that in my father’s generation (The Greatest Generation) the 'story' was about “just the facts Ma’am”; we went here and then there and then there. This happened and then that happened. It was a historic generation and chronological dates and places were the important milestones. In my generation, the 'story' became all about the experience. Rock and roll, the civil rights movement, the anti-war movement, and Woodstock were experiences. The dates became less important. When was 'Kent State'? We don't know the exact date but we all know the words to the CSN&Y song "Ohio". The Beatles’ songs are timeless (actually many of the R&R songs from the late 50’s through the 70’s have become timeless; only the music historians know when they were recorded, but every generation since knows the songs… like “summertime blues”). In the Experience Generation (also known as the psychedelic generation) how events were connected, or how people changed in response to their experience was the measure of time. So, as I read my dad’s book, from within my generation, I am trying to read between the lines to find out what the experience of occupying a foreign country was, and what was the experience of his early marriage, and what did they think (their beliefs) about parenting? And then, in the middle of it all, there are places where he does discuss a bit more about his experience, mostly saying the event was "important", "sad", or "happy". Liz points out to me that perhaps my dad purposefully wrote this history without including events or story lines that were disagreeable.
We’ve gone through a few more generations and now my father’s oldest grandkids are in what they call Generation Y.* Gen Y is the wired generation and it functions on information bits (multiple modern media choices). Both Gen X and Gen Y live in the present and generally have little interest in slowly developing stories or histories. In my experience, having three of them as children, they have no interest in old movies that have slowly developing story lines. They get bored and leave to play computer games or communicate with their peers online or via cell phone. They want action and fast moving drama and they want it NOW. They are used to multi-tasking, so they may skip over uninteresting data to find exactly what they are looking for. I believe that the Greatest Generation looks aghast at the Experience Generation as we look aghast at Generation Why. I am proud that my dad published a book about our family and maybe it is now up to me to write one for the family from my generations world view. That’s the way I see it.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Wikepedia (2006) “Generation Y” retrieved online August 11th from http://en.wikipedia.org/wiki/Generation_Y
**"It was three years, not six years." Corrected 9/5/06, based on a phone call from my Dad; who asked where I got the figure of 6 years. I replied that I just figured he started this book after he finished the first one. Now the post is correct.
Saturday
On Friday afternoon my friend Carol at Work asked about Thursday’s dialysis; saying, “Were you canoodled?” and I am thinking ‘canoodled’ is an appropriate alternative word for cannulate.
Morning: I finished Fluke yesterday evening. There was some serendipity in the finishing. The main character is taken into a living organism 650 feet deep in the southern ocean off the coast of Chile and describes the interior similarly to my description of the inside of my right kidney in Post # 38 (August). His description is more writerly: “…a vibrant red chamber that was pulsing with light and glistening with moisture as the walls appeared to breathe. Now this looked like a living thing -- the inside of a living thing.” Of course, as I was reading along, I was thinking of the comparison with my interior kidney views, adding some of the visuals to my own visual characterizations.
El Milagro: Matt canoodled me today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I am reading my dad’s new book, John & Kay. My dad is an 83 year old somewhat cantankerous retired military officer who has published two books for our family. The new book, written over the last three** years, is about his recollections of his “chronological” life story from his childhood years through his retirement. Much of it tracks his military career during the occupation of Germany after WW II, his post-war military assignments related to guided missile and RADAR development, and the connected, noteworthy events in our family history. As I read his recollections, I am amazed at my dad’s memory for dates, places, and events. I wonder, did he make notes throughout his life, or does he just have an amazingly organized file cabinet?
Also, as I read the book, it jogs my memory of various scenes, conversations and stories told by my mom, and I am even learning a few things about my parents’ lives that I didn’t formerly know. And, as I read along, there are times I wonder about the story behind the story. The details are there but I want to know what they were thinking and feeling about the events in their lives? What was the experience like? What music was playing when they were driving from Detroit to Lawrence? I want the scene developed to include the mood and the hyperbole. It seems that in my father’s generation (The Greatest Generation) the 'story' was about “just the facts Ma’am”; we went here and then there and then there. This happened and then that happened. It was a historic generation and chronological dates and places were the important milestones. In my generation, the 'story' became all about the experience. Rock and roll, the civil rights movement, the anti-war movement, and Woodstock were experiences. The dates became less important. When was 'Kent State'? We don't know the exact date but we all know the words to the CSN&Y song "Ohio". The Beatles’ songs are timeless (actually many of the R&R songs from the late 50’s through the 70’s have become timeless; only the music historians know when they were recorded, but every generation since knows the songs… like “summertime blues”). In the Experience Generation (also known as the psychedelic generation) how events were connected, or how people changed in response to their experience was the measure of time. So, as I read my dad’s book, from within my generation, I am trying to read between the lines to find out what the experience of occupying a foreign country was, and what was the experience of his early marriage, and what did they think (their beliefs) about parenting? And then, in the middle of it all, there are places where he does discuss a bit more about his experience, mostly saying the event was "important", "sad", or "happy". Liz points out to me that perhaps my dad purposefully wrote this history without including events or story lines that were disagreeable.
We’ve gone through a few more generations and now my father’s oldest grandkids are in what they call Generation Y.* Gen Y is the wired generation and it functions on information bits (multiple modern media choices). Both Gen X and Gen Y live in the present and generally have little interest in slowly developing stories or histories. In my experience, having three of them as children, they have no interest in old movies that have slowly developing story lines. They get bored and leave to play computer games or communicate with their peers online or via cell phone. They want action and fast moving drama and they want it NOW. They are used to multi-tasking, so they may skip over uninteresting data to find exactly what they are looking for. I believe that the Greatest Generation looks aghast at the Experience Generation as we look aghast at Generation Why. I am proud that my dad published a book about our family and maybe it is now up to me to write one for the family from my generations world view. That’s the way I see it.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Wikepedia (2006) “Generation Y” retrieved online August 11th from http://en.wikipedia.org/wiki/Generation_Y
**"It was three years, not six years." Corrected 9/5/06, based on a phone call from my Dad; who asked where I got the figure of 6 years. I replied that I just figured he started this book after he finished the first one. Now the post is correct.
8/11/06
40) Ho-hum in da Dol-drum
August 10, 2006
Thursday
El Milagro: Diane cannulated me today – okay job. She has mentioned several times that my fistula is getting easier to work with as it 'matures'. I wonder again if it is me or her that is maturing. Today is basically a b--o--r--i--n--g session. Read my book, watched the news, and slept. I am still committed to writing a post every time, to fully document the experience of being here. If it is boring for me, I hope it is boring for you, dear reader.
I observe the sunglasses Hollywood (important) lady visit with her sister; a younger version with the same glasses. There is dedication and loyalty in those who sit with their relatives here. Even if they wear smart scarves and shades.
My book, Fluke, is really getting exciting... and I will finish it before John leaves next Wednesday! So it goes.
Notes: In at 73.3 Kg. and out at 71.6 Kg.
Thursday
El Milagro: Diane cannulated me today – okay job. She has mentioned several times that my fistula is getting easier to work with as it 'matures'. I wonder again if it is me or her that is maturing. Today is basically a b--o--r--i--n--g session. Read my book, watched the news, and slept. I am still committed to writing a post every time, to fully document the experience of being here. If it is boring for me, I hope it is boring for you, dear reader.
I observe the sunglasses Hollywood (important) lady visit with her sister; a younger version with the same glasses. There is dedication and loyalty in those who sit with their relatives here. Even if they wear smart scarves and shades.
My book, Fluke, is really getting exciting... and I will finish it before John leaves next Wednesday! So it goes.
Notes: In at 73.3 Kg. and out at 71.6 Kg.
8/9/06
39) In Which Jack Doesn't Meet Jill
August 8, 2006
Tuesday
El Milagro: Carol cannulated me today. She is an all-business tech with her hair pulled back into a pony tail and she rushes around doing her job as if the faster she works the quicker the time will pass. Not too much small talk but friendly enough and seemingly very experienced and professional.
After I am cannulated and ten pages into my reading, the new, bookish, talky-phone woman arrives and is seated right beside me to the right. I am hearing little tidbits about her as Phyllis does her introduction talk and asks if she has any questions. I learn her name is Jill. She has a 14 year old daughter. Jill has lots of friends, extrapolating from the number of phone calls she gets and makes. Maybe it’s just her daughter calling her every few minutes. I am waiting to introduce myself to her but every time I get ready to, she gets on the phone.
So, today I just read on my book, watch the news, and take a snooze.
Notes: In at 74.4 Kg. and out at 71.6 Kg.
Tuesday
El Milagro: Carol cannulated me today. She is an all-business tech with her hair pulled back into a pony tail and she rushes around doing her job as if the faster she works the quicker the time will pass. Not too much small talk but friendly enough and seemingly very experienced and professional.
After I am cannulated and ten pages into my reading, the new, bookish, talky-phone woman arrives and is seated right beside me to the right. I am hearing little tidbits about her as Phyllis does her introduction talk and asks if she has any questions. I learn her name is Jill. She has a 14 year old daughter. Jill has lots of friends, extrapolating from the number of phone calls she gets and makes. Maybe it’s just her daughter calling her every few minutes. I am waiting to introduce myself to her but every time I get ready to, she gets on the phone.
So, today I just read on my book, watch the news, and take a snooze.
Notes: In at 74.4 Kg. and out at 71.6 Kg.
8/7/06
38) Three Day Report
August 3, 2006
Thursday
El Milagro: Diane cannulated me today; again good. Liz met with Jennifer the Dietician today about our eating habits and how we can better rid ourselves of the demon phosphorous. Then Liz came and reported to me while I was on the machine… the upshot being that Jennifer the Dietician thinks our food behaviors at home are good and that maybe they just need to give me another kind of binder or something. She told Liz that whenever a person gets their phosphorous under control, they don’t usually have further problems with it, so that is a motivation to keep up my attempts to get it out of my diet.
Notes: (Forgot to check weights).
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August 4, 2006
Friday:
Kerrville: Kim and I are taking Anita Jung* to do a workshop on youth who self-mutilate. Anita mixes data and ideas with participatory exercises in her workshops. So, at some point Anita leads this guided imagery exercise that I participate in… one of those “going to a place that’s relaxing” trance-like thingies. Well, I decide that it is more important for me to have a conversation with my cystic kidneys than to go to a grassy riverbank on the shore of the south fork Guadalupe River, so I transport myself right into my kidney to have a heart-to-heart with my cysts. I pop myself into the middle of my right kidney, imagining it like a large cavern having a glistening bloppy red roof with cysts poking out of the ceiling and walls, and laying about on the floor where I’m sitting (in an easy chair upholstered blue grey with 2 inch silver embroidered fleur-de-lis. I picture the cysts like those fuzzy purplish burrs we
see around Central Texas…. like eryngo without the spiny leaves. I’m sitting there comfortably in the over-stuffed easy chair saying:
“Hello cysties. In the last few years I’ve been very angry and frustrated about your existence in my kidneys. You’re making me fat around the middle; although I’ve promised myself I’ll never buy a pair of Levi 501’s larger than a 34” waist. So, you’ll just have to get squeezed when you multiply. I wonder how it is you decided to grow here and what the Hell you have against me! Is it all about my having a ‘sense of shame, failure, disappointment, and being over-critical’ as Louise Hay** would suggest? Now I’m sitting here in my easy chair, ready to have a heart-to-heart with you. I really want to know what the deal is. I am willing to accept your presence and willing to assume there is a positive intention in your behavior, if you will only describe to me what it could possibly be. I’m on a list to have your house replaced, but I want you to know it’s nothing personal. It’s just that I want to go on living and do it without the constraint of being on dialysis forever. I want to look forward to another sailing trip to the Caribbean with my family and I really can’t see doing that without a new kidney. So, I’d like you to think it over and see if there is a way for you to be part of the solution instead of being the problem. If there is something I can do to ‘heal’ you, please give me some sort of comprehensible sign and I’ll get right on to doing whatever I have to do. Thanks for listening to my diatribes and I hope you don’t take them too personally.”
So, that is basically the conversation I had with the cysts. Anita calls us out of our 'relaxing' trance places and I open my eyes to the bright room. I don’t recall any answers coming forth from the cysts; but logically, why would they answer? They’ve been cursed and diss’d by me for years now so it is really no wonder they are incommunicado. In my mind, I am just starting to build some sort of relationship with them so it may be several sessions before they open up. That’s the way it seems to me.
Notes: *See Anita Jung’s Home of Therapeutic Change (nd) retrieved online June 15, 2006 at http://www.angelfire.com/psy/anita_jung/
**Hay, Louise L. (1987) You can heal your life. London: Hay House UK, Ltd. (LH & Kidneys online at: https://howhealthworks.com/nacho_newsletters/nacho_4.htm )
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August 5, 2006
Saturday
El Milagro: Herman cannulated me today and I recalled his slickness at sticking people, since he hasn’t stuck me in weeks. He indicated keeping track of my blog and we laughed about certain entries. Today again, the woman who says “help” was in the room, quietly saying her 'helps' throughout most of my time on the machine. The Sunglassed Important Lady (see Post #34) is here and some younger preppy relatives visit her, staying a few minutes to 'do their time'. And, the new Bookish Talky-Phone Woman (see Post #35) is adjusting to being here I hallucinate: she is now watching TV more than reading. I read my new book, Fluke* for most of the session; trying to finish it before I give it to my son John to take to Hawaii on August 15th.
I also spend some time visualizing how I want to plant the cactus we bought this morning... they'll go on the south side of the garage that I’ve cleared for our cactus garden.
Notes: In at 74.3 Kg. and out at 71.7 Kg.
*Moore, Christopher (2004) Fluke: Or, I know why the winged whale sings. New York: Harper Collins Publishers, Inc. (See the author’s website online: http://www.chrismoore.com/bookpage.asp?PB_ISBN=006056668X )
Thursday
El Milagro: Diane cannulated me today; again good. Liz met with Jennifer the Dietician today about our eating habits and how we can better rid ourselves of the demon phosphorous. Then Liz came and reported to me while I was on the machine… the upshot being that Jennifer the Dietician thinks our food behaviors at home are good and that maybe they just need to give me another kind of binder or something. She told Liz that whenever a person gets their phosphorous under control, they don’t usually have further problems with it, so that is a motivation to keep up my attempts to get it out of my diet.
Notes: (Forgot to check weights).
<◊><◊><◊><◊> <◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
August 4, 2006
Friday:
Kerrville: Kim and I are taking Anita Jung* to do a workshop on youth who self-mutilate. Anita mixes data and ideas with participatory exercises in her workshops. So, at some point Anita leads this guided imagery exercise that I participate in… one of those “going to a place that’s relaxing” trance-like thingies. Well, I decide that it is more important for me to have a conversation with my cystic kidneys than to go to a grassy riverbank on the shore of the south fork Guadalupe River, so I transport myself right into my kidney to have a heart-to-heart with my cysts. I pop myself into the middle of my right kidney, imagining it like a large cavern having a glistening bloppy red roof with cysts poking out of the ceiling and walls, and laying about on the floor where I’m sitting (in an easy chair upholstered blue grey with 2 inch silver embroidered fleur-de-lis. I picture the cysts like those fuzzy purplish burrs we
see around Central Texas…. like eryngo without the spiny leaves. I’m sitting there comfortably in the over-stuffed easy chair saying:“Hello cysties. In the last few years I’ve been very angry and frustrated about your existence in my kidneys. You’re making me fat around the middle; although I’ve promised myself I’ll never buy a pair of Levi 501’s larger than a 34” waist. So, you’ll just have to get squeezed when you multiply. I wonder how it is you decided to grow here and what the Hell you have against me! Is it all about my having a ‘sense of shame, failure, disappointment, and being over-critical’ as Louise Hay** would suggest? Now I’m sitting here in my easy chair, ready to have a heart-to-heart with you. I really want to know what the deal is. I am willing to accept your presence and willing to assume there is a positive intention in your behavior, if you will only describe to me what it could possibly be. I’m on a list to have your house replaced, but I want you to know it’s nothing personal. It’s just that I want to go on living and do it without the constraint of being on dialysis forever. I want to look forward to another sailing trip to the Caribbean with my family and I really can’t see doing that without a new kidney. So, I’d like you to think it over and see if there is a way for you to be part of the solution instead of being the problem. If there is something I can do to ‘heal’ you, please give me some sort of comprehensible sign and I’ll get right on to doing whatever I have to do. Thanks for listening to my diatribes and I hope you don’t take them too personally.”
So, that is basically the conversation I had with the cysts. Anita calls us out of our 'relaxing' trance places and I open my eyes to the bright room. I don’t recall any answers coming forth from the cysts; but logically, why would they answer? They’ve been cursed and diss’d by me for years now so it is really no wonder they are incommunicado. In my mind, I am just starting to build some sort of relationship with them so it may be several sessions before they open up. That’s the way it seems to me.
Notes: *See Anita Jung’s Home of Therapeutic Change (nd) retrieved online June 15, 2006 at http://www.angelfire.com/psy/anita_jung/
**Hay, Louise L. (1987) You can heal your life. London: Hay House UK, Ltd. (LH & Kidneys online at: https://howhealthworks.com/nacho_newsletters/nacho_4.htm )
<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
August 5, 2006
Saturday
El Milagro: Herman cannulated me today and I recalled his slickness at sticking people, since he hasn’t stuck me in weeks. He indicated keeping track of my blog and we laughed about certain entries. Today again, the woman who says “help” was in the room, quietly saying her 'helps' throughout most of my time on the machine. The Sunglassed Important Lady (see Post #34) is here and some younger preppy relatives visit her, staying a few minutes to 'do their time'. And, the new Bookish Talky-Phone Woman (see Post #35) is adjusting to being here I hallucinate: she is now watching TV more than reading. I read my new book, Fluke* for most of the session; trying to finish it before I give it to my son John to take to Hawaii on August 15th.
I also spend some time visualizing how I want to plant the cactus we bought this morning... they'll go on the south side of the garage that I’ve cleared for our cactus garden.
Notes: In at 74.3 Kg. and out at 71.7 Kg.
*Moore, Christopher (2004) Fluke: Or, I know why the winged whale sings. New York: Harper Collins Publishers, Inc. (See the author’s website online: http://www.chrismoore.com/bookpage.asp?PB_ISBN=006056668X )
8/2/06
37) Trout Sleeping in America
August 1, 2006
Tuesday
El Milagro: Eloy cannulated me today. I’m still wrapped up in Paris Trout and read furiously until time for the news. Today I’m sitting next to the lady who says “Help!” from under a blanket (see Post # 11 in May). But now I have gotten used to her sporadic calls and they hardly interrupt my thoughts. However, they seem disturbing to the new woman across the way. She can’t see the 'lady who says “help”' (like the "knights who say "Ni"*) and so she is looking around to see who is getting attention. Since the lady who says “help” doesn’t get any attention, the new woman just keeps looking around.
At 5:30 I started watching the news and almost immediately fell asleep. Either the news put me to sleep or I was really tired today…. don’t know which cause I missed the news. Sleeping at the center is getting easier and I have taught myself to do it without moving my left arm, which is attached to my dialysis machine.
Notes: In at 73.6 Kg, and out at 72.8 Kg.
* Knights who say Ni (nd) Retrieved August 2 online from Wikopedia at http://en.wikipedia.org/wiki/Knights_who_say_Ni
The "new mean guy"s name is Matt.
Tuesday
El Milagro: Eloy cannulated me today. I’m still wrapped up in Paris Trout and read furiously until time for the news. Today I’m sitting next to the lady who says “Help!” from under a blanket (see Post # 11 in May). But now I have gotten used to her sporadic calls and they hardly interrupt my thoughts. However, they seem disturbing to the new woman across the way. She can’t see the 'lady who says “help”' (like the "knights who say "Ni"*) and so she is looking around to see who is getting attention. Since the lady who says “help” doesn’t get any attention, the new woman just keeps looking around.
At 5:30 I started watching the news and almost immediately fell asleep. Either the news put me to sleep or I was really tired today…. don’t know which cause I missed the news. Sleeping at the center is getting easier and I have taught myself to do it without moving my left arm, which is attached to my dialysis machine.
Notes: In at 73.6 Kg, and out at 72.8 Kg.
* Knights who say Ni (nd) Retrieved August 2 online from Wikopedia at http://en.wikipedia.org/wiki/Knights_who_say_Ni
The "new mean guy"s name is Matt.
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