Guaranteed to change
15. ?
14. The Who
13. James Taylor
12. Shawn Colvin
11. U2
10. Pete Seeger
09. Bright Eyes
08. Bonnie Raitt
07. Oasis/ Noel Gallagher
06. Radiohead/ Thom Yorke
05. Pink Floyd
04. Blur/Gorillaz/Damon Albarn
03. Bob Dylan
02.
01. Bruce Springsteen/-Paul McCartney/ John Lennon
Friday, December 01, 2006
Monday, November 27, 2006
Thanksgiving
I was finally out of the hospital for thanksgiving and feeling good enough to enjoy it. Sara and I and Tara went to Sara's folk's place for the holiday of thanks. Sara and I have a lot to be thankful for and much to be saddened over. We are thankful that Sara was and is able to attend school and start on her path towards becoming a nurse. We are thankful for the U of M for that and for kicking my cancer's ass. They are also working on my Cat's tumor; I hope it works.
So, Thank you to the University of Minnesota!!
And now Sara is flocking around me, so she must be trying to kick me off, so she can do homework. More later,
JJ
So, Thank you to the University of Minnesota!!
And now Sara is flocking around me, so she must be trying to kick me off, so she can do homework. More later,
JJ
Friday, November 17, 2006
Disappointing week
This week has been rather hard for us on several fronts. First, we had several appointments, including one with a new pain Doc and another with a new Spine surgeon. After my battle with chronic pain over the last few years, we were hoping that an implanted morphine pump was a final solution, but for several reasons, the doctor will not do it. He believes that I will be too open to a meningitis infection, also he does not believe that the pain I have will be helped by the pump.
The spine doc does not believe that he can do anything for me because I am basically too young for concrete injections and not acute enough for anything else.
Beyond this, are new good friends and are partners on the BMT path have left for home. This is so wonderful for them and we are overjoyed that they get to go home. But, we will miss their presence, their company and especially their understanding. My hope is that our friendship continues for a very long time.
Well, I am gonna go and read. Good night.
The spine doc does not believe that he can do anything for me because I am basically too young for concrete injections and not acute enough for anything else.
Beyond this, are new good friends and are partners on the BMT path have left for home. This is so wonderful for them and we are overjoyed that they get to go home. But, we will miss their presence, their company and especially their understanding. My hope is that our friendship continues for a very long time.
Well, I am gonna go and read. Good night.
Wednesday, November 01, 2006
The Inevitability of Love
Some heart-breaking news has hit our happy and beautiful home. It seems that Sara and I have already been going through a Jobian experienece, with my Cancer, treatment, recovery, and all else. But, now something else...something much more devastating . Our heart, our love, our wonderful cat Tara is dying of what else, cancer. She has a tumor on her tongue that makes it hard to impossible to eat. The eventual outcome of this cancer is starvation. We already have to spoon feed her or fill a syringe with food and shoot it into her mouth. Unfortunately, it only takes from a week to several months for this cancer to kill. Since Tara is already very small... We have also already noticed a decrease in her eating habits.
Tara has been with us through everything, through all of my pain and all of my joy...she has been my rock and my refuge, she has kept me sane when nothing else would. Anywords that I say about her are too little, not enough, not beautiful enough to describe her heart and her ability to love me and now to love Sara. To say she will be miss is to say the ocean is just water.
My Tara...
Wednesday, October 18, 2006
Off the Record
Our computer is being dumb and consequently I have been cut off from the internet for quite some time. Sara had to come to the library to study tonight, so I cam with and thus I am back on my blog. I hope all of you are doing well. I wager you are doing better than I. I am currently sitting in my wheelchair because my three long leg bones have started dying (at least in the right leg). This is a result of being on prednisone for so long. My knee is in alot of pain. In addition, my back still has compression fractures, in fact I have more fractures. My back is also in a lot of pain. So much pain that my doctors are thinking about putting in a device that releases morphine directly into my spine. This uses less medicine, has fewer side effects, and could cut my pain by more than half. There would be a surgery to implant the sucker, but I think my BMT docs might go for it.
I have also been experiencing some kidney troubles, but it look like they are starting to get better. I hope.
Hopefully I will be able to get back on soon. Please leave comments if you want, I would love to hear from you.
Love,
JJ
I have also been experiencing some kidney troubles, but it look like they are starting to get better. I hope.
Hopefully I will be able to get back on soon. Please leave comments if you want, I would love to hear from you.
Love,
JJ
Sunday, September 24, 2006
First day of School
Here is my beautiful gal Sara on her first day of Nursing school. Isn't she cute? I am so proud of her. Many know this already, but Sara was 5 days into a Nursing program down in Denver, CO when I got cancer the first time. She and I decided that she would drop out and become my full time caregiver as well as girlfriend (believe me the latter job is more than enough). So, finally after this long and painful journey, Sara is now back in Nursing school and doing wonderfully. She is trully an amazing woman. I know from personal experience that she gives her entire spirit to those she is caring for. She as an innate ability to heal. I know because she has brought me back from the brink of death several times.She is my hero, my lover, my bestfriend, and one of my greatest teachers.
JJ
Friday, September 22, 2006
The Twilight Zone
I sit alone.
Stuck to the cushion.
"Act Now!"
"Act Now!"
Thoughts let them flow.
But should I get up?
She needs me.
Call her, she came to see you many times in the hospital.
Get up!
I sit alone on the couch.
Images from space enter my room.
Are they my friends?
Or is it one giant distraction.
The Idiot box keeps me captive.
I free myself through you my teacher,
I heal myself through your prayers.
I am done?
Can I go? No, the twilight zone.
Bill says the zone between illness and wellness.
Must progress?!?
Or Must I accept?
Can I do both?
Thoughts, get up...
Call her, she needs you.
Call her.
No debate, no thoughts,
Call her.
I love you, Reesa.
I sit alone.
I call out to you, will you answer.
I have been there, more deeply than you know.
I sit alone.
The cushion pulls me.
Tomorrow, I promise...
Stuck to the cushion.
"Act Now!"
"Act Now!"
Thoughts let them flow.
But should I get up?
She needs me.
Call her, she came to see you many times in the hospital.
Get up!
I sit alone on the couch.
Images from space enter my room.
Are they my friends?
Or is it one giant distraction.
The Idiot box keeps me captive.
I free myself through you my teacher,
I heal myself through your prayers.
I am done?
Can I go? No, the twilight zone.
Bill says the zone between illness and wellness.
Must progress?!?
Or Must I accept?
Can I do both?
Thoughts, get up...
Call her, she needs you.
Call her.
No debate, no thoughts,
Call her.
I love you, Reesa.
I sit alone.
I call out to you, will you answer.
I have been there, more deeply than you know.
I sit alone.
The cushion pulls me.
Tomorrow, I promise...
Sunday, September 17, 2006
Seeing through the white coat, good hair and nice shoes.
Last week and friend of mine and I were having a discussion in the infusion room of a certain clinic in a nameless hospital in the beautiful city of Minneapolis. To protect his privacy I shall call him Pat. You see Pat and I had both gone through umbilical cord transplants and are now navigating our way through the worst part, the most difficult part...the healing process. Once in a while, more for him, we need to go to the clinic and get a tune-up of sorts. The big scare after a transplant, besides getting cancer again, is our graft attacking us the host, graft versus host disease, gvh, for short. Gvh can rear its ugly head in a multitude of ways...Its favorite ways are by attacking the skin or the gut (any and all places in the gut). Pat and I were laughing about the fact that they put us through these horrendous tests (tubes going up and down places they shouldn't; lips severed and glands removed; skin one-hole punched out, etc...) that are almost always ambiguous and they end up putting us on the drugs to combat Gvh anyways.
That night, I ended up reading several relevant passages from a book I was reading and have now finished (anyone following the reading list??). These are from White Noise by Don Delillo. I highly recommend this book. Very well written and takes many cool and irreverent turns. Nevertheless, here are the passages. To set up the main character believes that he has been exposed to what was termed an "airborne toxic event".
I decided to take another physical. When the results were in, I went to see Dr. Chakravarty in his little office in the medical building. He sat there reading the printout, a man with a puffy face and shadowy eyes, his long hands set flat on the desk, his head wagging slightly.
"Here you are again, Mr Gladney. We see you so often these days. How nice it is to find a patient who regards his status seriously."
"What Status?"
"His status as a patient. People tend to forget they are patients. Once they leave the doctor's office or the hospital, they simply put it out of their minds. But you are all permanent patients, like it or not. I am the doctor, you the patient. Doctor doesn't cease being doctor at close of day. Neither should patient. People expect doctor to go about things with utmost seriousness, skill and experience. But what about the patient? How professional is he?"
He did not look up from the printout as he said these things in his meticulous singsong.
"I don't think I like your potassium very much at all," he went on. "Look here. A bracketed number with computerized stars."
"What does that mean?
"There's no point your knowing at this stage."
"How was my potassium last time?"
"Quite average in fact. But perhaps this is a false elevation. We are dealing with whole blood. There is a question of a gel barrier. Do you know what that means?"
"No."
"There isn't time to explain. We have true elevation and false elevations. This is all you have to know."
"Exactly how elevated is my potassium?"
"It has gone through the roof, evidently"
"What might that be a sign of?
"It could mean nothing, it could mean a great deal indeed."
"How great?"
"Now we are getting into semantics," he said.
"What I'm trying to get at is could this potassium be an indication of some condition just beginning to manifest itself, some condition caused perhaps by an ingestion, an exposure, an involuntary spillage-intake, some substance in the air of the rain?"
"Have you in fact come into contact with such a substance?"
"No," I Said.
"Are you sure?"
"Positive. Why, do the numbers show some sign of possible exposure?
"If you haven't been exposed, then they couldn't very well show a sign, could they?"
"Then we agree," I said.
"Tell me this, Mr. Gladney, in all honesty. How do you feel?"
"To the best of my knowledge, I feel very well. First-rate. I feel better than I have in years, relatively speaking."
"What do you mean, relatively speaking?"
"Given the fact that I am older now."
He looked at me carefully. He seemed to be trying to stare me down. Then he made a note in my record. I might have been a child facing the school principal over a series of unexcused absences.
I said, "How can we tell whether the elevation is true or false?"
"I will send you to Glassboro for further tests. Would you like that? There is a brand-new facility called Autumn Harvest Farms. They have gleaming new equipment. You won't be disappointed, wait and see. It gleams, absolutely."
"All right. But is potassium the only thing we have to watch?"
"The less you know, the better. Go to Glassboro. Tell them to delve thoroughly. No stone unturned. Tell them to send you back to me with sealed results. I will analyze them down to the smallest detail. I will absolutely pick them apart. They have the know-how at Harvest Farms, the most delicate of instruments, I promise you. The best of third-world technicians, the latest procedures."
His bright smile hung there like a peach on a tree.
"Together, as doctor and patient, we can do things that neither of us could do separately. There is not enough emphasis on prevention. An ounce of prevention, goes the saying. Is this a proverb or a maxim? Surely professor can tell us."
"I'll need time to think about it."
"In any case, prevention is the thing, isn't it? I've just seen the latest issue of American Mortician. Quite a shocking picture. The industry is barely adequate to accommodating the vast numbers of dead."
I thought this passage was poignant at the time? What do you think?
Master J^2
That night, I ended up reading several relevant passages from a book I was reading and have now finished (anyone following the reading list??). These are from White Noise by Don Delillo. I highly recommend this book. Very well written and takes many cool and irreverent turns. Nevertheless, here are the passages. To set up the main character believes that he has been exposed to what was termed an "airborne toxic event".
I decided to take another physical. When the results were in, I went to see Dr. Chakravarty in his little office in the medical building. He sat there reading the printout, a man with a puffy face and shadowy eyes, his long hands set flat on the desk, his head wagging slightly.
"Here you are again, Mr Gladney. We see you so often these days. How nice it is to find a patient who regards his status seriously."
"What Status?"
"His status as a patient. People tend to forget they are patients. Once they leave the doctor's office or the hospital, they simply put it out of their minds. But you are all permanent patients, like it or not. I am the doctor, you the patient. Doctor doesn't cease being doctor at close of day. Neither should patient. People expect doctor to go about things with utmost seriousness, skill and experience. But what about the patient? How professional is he?"
He did not look up from the printout as he said these things in his meticulous singsong.
"I don't think I like your potassium very much at all," he went on. "Look here. A bracketed number with computerized stars."
"What does that mean?
"There's no point your knowing at this stage."
"How was my potassium last time?"
"Quite average in fact. But perhaps this is a false elevation. We are dealing with whole blood. There is a question of a gel barrier. Do you know what that means?"
"No."
"There isn't time to explain. We have true elevation and false elevations. This is all you have to know."
"Exactly how elevated is my potassium?"
"It has gone through the roof, evidently"
"What might that be a sign of?
"It could mean nothing, it could mean a great deal indeed."
"How great?"
"Now we are getting into semantics," he said.
"What I'm trying to get at is could this potassium be an indication of some condition just beginning to manifest itself, some condition caused perhaps by an ingestion, an exposure, an involuntary spillage-intake, some substance in the air of the rain?"
"Have you in fact come into contact with such a substance?"
"No," I Said.
"Are you sure?"
"Positive. Why, do the numbers show some sign of possible exposure?
"If you haven't been exposed, then they couldn't very well show a sign, could they?"
"Then we agree," I said.
"Tell me this, Mr. Gladney, in all honesty. How do you feel?"
"To the best of my knowledge, I feel very well. First-rate. I feel better than I have in years, relatively speaking."
"What do you mean, relatively speaking?"
"Given the fact that I am older now."
He looked at me carefully. He seemed to be trying to stare me down. Then he made a note in my record. I might have been a child facing the school principal over a series of unexcused absences.
I said, "How can we tell whether the elevation is true or false?"
"I will send you to Glassboro for further tests. Would you like that? There is a brand-new facility called Autumn Harvest Farms. They have gleaming new equipment. You won't be disappointed, wait and see. It gleams, absolutely."
"All right. But is potassium the only thing we have to watch?"
"The less you know, the better. Go to Glassboro. Tell them to delve thoroughly. No stone unturned. Tell them to send you back to me with sealed results. I will analyze them down to the smallest detail. I will absolutely pick them apart. They have the know-how at Harvest Farms, the most delicate of instruments, I promise you. The best of third-world technicians, the latest procedures."
His bright smile hung there like a peach on a tree.
"Together, as doctor and patient, we can do things that neither of us could do separately. There is not enough emphasis on prevention. An ounce of prevention, goes the saying. Is this a proverb or a maxim? Surely professor can tell us."
"I'll need time to think about it."
"In any case, prevention is the thing, isn't it? I've just seen the latest issue of American Mortician. Quite a shocking picture. The industry is barely adequate to accommodating the vast numbers of dead."
I thought this passage was poignant at the time? What do you think?
Master J^2
Tuesday, August 22, 2006
For Vitalia
Hey Buddy,
If you are still Coming we would love to see you.
My Number is 612-345-5419...
Stalkers beware I will find you..and tickle you until you stop calling me.
JJ
If you are still Coming we would love to see you.
My Number is 612-345-5419...
Stalkers beware I will find you..and tickle you until you stop calling me.
JJ
Thursday, August 17, 2006
Insomnia is a b***h
I have insomnia for about the tenth night in a row. it is starting to get to me...I am sleeping until about noon or later and the rest of the day until about 11pm I am a zombie. and though I love zombies I have never wanted to be one. zombies kill in numbers, i am just one. how can I get anything done without access to my fellow zombies.
I went to the doc today and was stuck there for 6 hours because of several infusions, one of which took four hours. that one was antibodies, yummy!
well instead of continuing to watch bad tv and try to get some sleep...more to come.
Love,
JJ starfighting zombie
I went to the doc today and was stuck there for 6 hours because of several infusions, one of which took four hours. that one was antibodies, yummy!
well instead of continuing to watch bad tv and try to get some sleep...more to come.
Love,
JJ starfighting zombie
Wednesday, July 26, 2006
Alone on the path, or am I trapped in my head; or perhaps I a m beggin for attention or just jealous of all the attention Matt is receiving...
But this is my blog and I don't often whine or bitch...however, here we go. I am not sure what the reason, but I have been feeling massivly alone lately...It feels like I barely see my family or what firends I have left, and when I do I am just so tired, or I don;t have anything to say...no plans, no future, no mind for the present, no exciting stories or opportunities to scorn the man.
I am going up north to be with my family as we do once a year. Last in my mind is a blur and kinda sucked because Cam got sick, I was relaspeing, and my love was missing. I know I am afraid of relapsing especially because of the time and the occassion. I am just having a hard time finding what I can offer the world anymore.
In some ways I am very jealous of Matt , as sick as that may seem. I miss the constant attention, where someone cared if my temp fluctuated .1 degree...I miss complaining about the drugs, but most of all I miss feeling the love, though he seems to have monsters more support than I ever did. Tonight I go to bed, unprepared for our journey up North, confused with the world, having my love mad at me and sleeping the opposite way than me and just sad.
jj
PS I am sorry if I pissed anyone off...maybe
I am going up north to be with my family as we do once a year. Last in my mind is a blur and kinda sucked because Cam got sick, I was relaspeing, and my love was missing. I know I am afraid of relapsing especially because of the time and the occassion. I am just having a hard time finding what I can offer the world anymore.
In some ways I am very jealous of Matt , as sick as that may seem. I miss the constant attention, where someone cared if my temp fluctuated .1 degree...I miss complaining about the drugs, but most of all I miss feeling the love, though he seems to have monsters more support than I ever did. Tonight I go to bed, unprepared for our journey up North, confused with the world, having my love mad at me and sleeping the opposite way than me and just sad.
jj
PS I am sorry if I pissed anyone off...maybe
Sunday, July 16, 2006
Brother on the path
HI,
Some of you may have noticed a sub-adventure going on on the blog. A friend of a friend had been following our story closely and was inspired by our battles. He was so inspired that he decided to get AML and come the U for a Umblical cordblood transplant. (Just kidding about choosing, but he is here). Before he went in, Sara and I got together with him (Matt) and his girlfriend Ellen. On this past wednesday he went into the hospital to start his transplant. He is doing a course of several chemo drugs and several rounds of total body irradiation. On his first radiation, which was saturday morning at 8am, I went with him, along with ellen and his parents. Matt, i hope this is ok to say, but he was a little fearful of the radiation--I think most would be. He took it like a champion and he seems to be doing well so far. My hope is that he will sail through this with minimal side effects.
Though we just met I feel extremely close to Matt and Ellen and I hope we remain friends for many years (decades). Please all of you who have support me and prayed for me, direct your love to Matt too. He is a great guy.
Love,
JJ
PS He has a blog too, but I can't find the address, but as soon as I do I will let you know.
Here is the address http://pimpettforever.blogspot.com/
Some of you may have noticed a sub-adventure going on on the blog. A friend of a friend had been following our story closely and was inspired by our battles. He was so inspired that he decided to get AML and come the U for a Umblical cordblood transplant. (Just kidding about choosing, but he is here). Before he went in, Sara and I got together with him (Matt) and his girlfriend Ellen. On this past wednesday he went into the hospital to start his transplant. He is doing a course of several chemo drugs and several rounds of total body irradiation. On his first radiation, which was saturday morning at 8am, I went with him, along with ellen and his parents. Matt, i hope this is ok to say, but he was a little fearful of the radiation--I think most would be. He took it like a champion and he seems to be doing well so far. My hope is that he will sail through this with minimal side effects.
Though we just met I feel extremely close to Matt and Ellen and I hope we remain friends for many years (decades). Please all of you who have support me and prayed for me, direct your love to Matt too. He is a great guy.
Love,
JJ
PS He has a blog too, but I can't find the address, but as soon as I do I will let you know.
Here is the address http://pimpettforever.blogspot.com/
Sunday, July 02, 2006
Children's Museum
Here is Sara, Camy, and I at the Minnesota Children's Museum. I think we are on some Crazy enlarged bug thingy. You can see my shiny, cuboid face caused by prednisone, other than that I love this picture. Sara looks very excited about the whole thing and Camy wants to go explore more.
Saturday, July 01, 2006
This Sara and I before Bruce's soundcheck. We were all alone with him during the soundcheck pretty awesome. He played Tunnel of Love for us, but did not play it during the show. The Set list is:Wreck On The Highway
Idiot's Delight
Into The Fire
Devils And Dust
Lonesome Day
Long Time Comin'
Back In Your Arms
For You
Johnny 99
All I'm Thinkin' About
Ain't Got You
One Step Up
Reno
Nothing Man
Thunder Road
The Rising
Darkness On The Edge Of Town
Jesus Was An Only Son
Two Hearts
The New Timer
Matamoros Banks
(encore)
I Wanna Marry You
The Ties That Bind
My Best Was Never Good Enough
The Promised Land
Dream Baby Dream
ahhh, just sit there, is that so hard?
Why can't I sit (meditate)? I have considered my self Buddhist for years and yet I don't sit, I want to...I tell myself everyday that I am going to. I have a beautiful little corner set out for my meditation and prayers. A beautiful altar put together over many years. What is my block? Certainly I had excuses, while I was sick, but ironically, I practiced m,ore in the hospital than I have outside. What are my distractions here...external Sara, Tara (cat), TV (World Cup, Wimbledon, Movies), food, books on and on and on...Internal too many to go into here to private, perhaps, to share with the world. Why not now...b/c I took my sleeping pill and will soon be out. Need Discipline...how do you all do it? No lies. how often do you sit?what makes you get there? how can you help me get there?
I went to a Twins baseball game with my brothers tonight. It was awesome. They won of course 8-2, two homeruns back to back was the highlight. Another was see the Brewers manager get booted out of the game and get up in the face of the umpire. It was like a movie. I have never seen that before.
World Cup predictions: England pulls it together and defeats Portugal 2-1; Brasil handily defeats France 4-2. That's all from the Pitch.
Sara went to go see her Sister Elsa for a few days, so I am alone for the first time in a very long time. It hasn't quite hit me yet, but I am sure once I try to sleep I will just start bawling and end up crying myself to sleep. Just kidding I will miss her though...a little.
That's all for now,
JJ
PS Ellen and Matt I would love to meet with you. I have a clinic appt. on thursday at 11. Is Matt in the Hospital yet? Is he sick, contagious with anything? I am clean. and I could arrange to come earlier if you want. Anything I can do to help, just ask. my email is followthebreath@hotmail.com
I went to a Twins baseball game with my brothers tonight. It was awesome. They won of course 8-2, two homeruns back to back was the highlight. Another was see the Brewers manager get booted out of the game and get up in the face of the umpire. It was like a movie. I have never seen that before.
World Cup predictions: England pulls it together and defeats Portugal 2-1; Brasil handily defeats France 4-2. That's all from the Pitch.
Sara went to go see her Sister Elsa for a few days, so I am alone for the first time in a very long time. It hasn't quite hit me yet, but I am sure once I try to sleep I will just start bawling and end up crying myself to sleep. Just kidding I will miss her though...a little.
That's all for now,
JJ
PS Ellen and Matt I would love to meet with you. I have a clinic appt. on thursday at 11. Is Matt in the Hospital yet? Is he sick, contagious with anything? I am clean. and I could arrange to come earlier if you want. Anything I can do to help, just ask. my email is followthebreath@hotmail.com
Thursday, June 22, 2006
Soccer, Books and the summer of Chill
Hello all or maybe just Tyler,
I received the results of my six month biopsy and I and completely cancer free. This is obviously tremendous news, but is all the more better considering that I relapsed about this time after my first transplant. I got another compression fracture in my spine so I have to wear my brace for a few more weeks? months? ... oh well. Most days I feel pretty good, but some are very hard and I sleep through most of those days. Sara and I spend most days going to appointments or trying to keep our house clean, which mostly falls on Sara because of my back, we also watch a lot of movies and are really into the Sopranos. Mostly we have just been loving spending good time together, like cuddling on the couch watching the World Cup or reading together. This is something that we have not had for literally years. It is so wonderful to just be and know that you can try to relax.
I am currently reading three books (hey I have to catch up). I am reading The Poisonwood Bible by Kingsolver, How Soccer Explains the World: an {unlikely} theory of globalization by Franklin Foer, and Atlas: From the Streets to the Ring: A Son's Struggle to Become a Man by Teddy Atlas. I was only reading the first two because I thought I had lost the third, which I was 2/3 done with anyway, but a magical girl at Kowalski's found it for me.
I have also gotten into baking bread, I try to make all kinds but I am mostly intrigued by sourdoughs. So, I have two sourdough starters and have made a number of breads from the first one, but I am getting ready to try the second starter which I made myself.
I am not sure what this blog is transforming into. I assume I have lost most of my audience, but maybe a few will check it now and then and I just might have something to say left hanging in cyberspace.
Love all,
JJ
I received the results of my six month biopsy and I and completely cancer free. This is obviously tremendous news, but is all the more better considering that I relapsed about this time after my first transplant. I got another compression fracture in my spine so I have to wear my brace for a few more weeks? months? ... oh well. Most days I feel pretty good, but some are very hard and I sleep through most of those days. Sara and I spend most days going to appointments or trying to keep our house clean, which mostly falls on Sara because of my back, we also watch a lot of movies and are really into the Sopranos. Mostly we have just been loving spending good time together, like cuddling on the couch watching the World Cup or reading together. This is something that we have not had for literally years. It is so wonderful to just be and know that you can try to relax.
I am currently reading three books (hey I have to catch up). I am reading The Poisonwood Bible by Kingsolver, How Soccer Explains the World: an {unlikely} theory of globalization by Franklin Foer, and Atlas: From the Streets to the Ring: A Son's Struggle to Become a Man by Teddy Atlas. I was only reading the first two because I thought I had lost the third, which I was 2/3 done with anyway, but a magical girl at Kowalski's found it for me.
I have also gotten into baking bread, I try to make all kinds but I am mostly intrigued by sourdoughs. So, I have two sourdough starters and have made a number of breads from the first one, but I am getting ready to try the second starter which I made myself.
I am not sure what this blog is transforming into. I assume I have lost most of my audience, but maybe a few will check it now and then and I just might have something to say left hanging in cyberspace.
Love all,
JJ
Thursday, May 04, 2006
Update
Hello Everyone, Just writing to give you a quick update on JJ since it is very difficult for him to keep up with his blog right now. These past few weeks have been very scary times for all of us and for JJ. His pneumonia-RSV lingers. His time in the hospital terrified us because he needed a lot of oxygen. He spent most of those days asleep, unreachable by us. There were many days when I would visit when I never got to see his eyes, only his eyelids. He is home now...but very medically fragile. He has a complex medical picture...this has been his journey. It forces his doctors sometimes to scratch their heads....Without going into too much detail he is having bladder, kidney, graft versus host disease, nausea/no appetite issues. The fractures in his back continue to wreak havoc. Extreme fatigue...still needs oxygen. Most days are spent going to the BMT clinic for hours, visiting the pain clinic, seeing various specialists, getting more medical tests, only to go home exhausted and to bed. Very few hours when he is awake and then it is difficult to engage with him for any length of time. His quality of life is indeed compromised. But each day he gets up and moves on...each day Sara remains a loving, compassionate presence. She continues to have a huge caregiving role even though she is presently taking 3 classes.
It breaks my heart to see him suffer so much, but he inspires me beyond words...Despite his life, he still bakes bread at times, reads cookbooks, read other books, watches the Sopranos (I got him hooked ono that) plans for his next grill-off with his brother Jason. We, who love him, feel impotent at times in the face of this dreadful disease and its aftermath. But we hold onto the hope of tomorrow and are thankful for another day with JJ.
Please keep them in your thoughts and prayers...keep the love flowing in their direction....they both feel it.
If you feel moved:
continue to support them financially
send Sara gas cards
offer to come and visit JJ to give Sara a break (she really needs it right now with finals coming up)
send him notes or emails to encourage him
buy Sara fresh flowers (she loves them)
offer her a massage
buy them gift certificates to Target or grocery stores
.... all of this helps immeasurably....Thank you for your ongoing support and love, Linda (JJ's Mom)
JJ's email address: followthebreath@hotmail.com
mailing address:
4528 Bryant Avenue South #2
Minneapolis MN 55419
It breaks my heart to see him suffer so much, but he inspires me beyond words...Despite his life, he still bakes bread at times, reads cookbooks, read other books, watches the Sopranos (I got him hooked ono that) plans for his next grill-off with his brother Jason. We, who love him, feel impotent at times in the face of this dreadful disease and its aftermath. But we hold onto the hope of tomorrow and are thankful for another day with JJ.
Please keep them in your thoughts and prayers...keep the love flowing in their direction....they both feel it.
If you feel moved:
continue to support them financially
send Sara gas cards
offer to come and visit JJ to give Sara a break (she really needs it right now with finals coming up)
send him notes or emails to encourage him
buy Sara fresh flowers (she loves them)
offer her a massage
buy them gift certificates to Target or grocery stores
.... all of this helps immeasurably....Thank you for your ongoing support and love, Linda (JJ's Mom)
JJ's email address: followthebreath@hotmail.com
mailing address:
4528 Bryant Avenue South #2
Minneapolis MN 55419
Thursday, April 13, 2006
RSV
Hello Everyone, Just a quick update on JJ. He has RSV in both lungs. RSV is a viral infection that is often present in a lot of us when we have a cold but is undectectable. However, it is particularly virulent on medically compromised patients (like JJ). He is presently undergoing an aggressive treatment which includes pumping a white mist directly into his lungs. He has to wear a mask for 12 hours a day for 5 days for this procedure. They are also transfusing him with blood products that help to fight RSV. Yesterday he did not feel well at all and slept most of the day. We are disappointed that the progress he seemed to be making has suffered with this latest wrinkle in his recovery from transplant. It is excruciating for all of us to go back to the BMT unit at the hospital. We worry for him. His balance, strength, coordination, memory problems, continuous tremors concern us. Please keep him in your thoughts and prayers. Our hope is that his body will respond to the treatment and he will be able to return home soon. There is a bright spot in all of this-- his bone marrow has grown back 50%, no sign of leukemia and butterfly seems to be holding on. Yay! But his journey is long and treacherous. He is still very medically fragile. He has now been on disability for almost 2 years with no end in sight for him. His outer life is small, but his mind is expansive, his heart is full of love to give and love received from all of you and his dreams and life energy remain strong. And that dear friends, speaks to JJ the man. The man I am blessed to have for a son. Much love, Linda (JJ's Mom)
Tuesday, April 11, 2006
Hospitalized
Hello Everyone, JJ was hospitalized on Sunday with pneumonia. We hope this stay will be short. It is very disheartening for him and for all of us to return to the BTM unit again. Despite this, his spirits are pretty good because he knows they can provide the care he needs right now that he could not receive at home. Sara, JJ and I took his nephew (my grandson) Cameron to the MN zoo on Saturday to see the baby farm animals. It was a delightful day that ended with a small family get together to celebrate JJ's 29th birthday. We are thankful for this time together just hours before he was hospitalized. This latest setback punctuates for all of us how tenuous his overall health continues to be despite his slow, steady progress toward health. He does not have access to the internet right now but keep him in your thoughts and prayers. If you like, send hm a post and hopefully he will see it soon. Much love, Linda ( JJ's Mom)
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