Friday, May 01, 2009

Another lonely Friday night

I hate the weekends.  I didn't always hate the weekends.  I used to revel in the debauchery that is the party/drinking nights of collegetown, USA.  That was, I guess, when I was in college.  My weekend started Thursday afternoon and ended, depending on whether I had a test or not, on Sunday night-Monday Morning.  We would often go right from our Thursday night class to The Joynt, most of the time with our professor.  I had fun, a lot of fun.  The most fun I have ever had in my life.  But now, I rarely have fun.  I am sometimes happy and I often laugh--I even make jokes, but I haven't had fun for a long, long time.  The causes of my current state have been well-documented on this blog and on my Caring Bridge site--the cancer, losing Sara, Losing my beloved Tara, and my current chronic pain/AVN disability.  All of these has led to bigtime super fucky depression.
I have always dealt with depression.  My father died when I was 4, and so my childhood was interspersed with episodes of depression.  I have always been internal; I am too much in my mind.  But, this this is the worst I have ever been.  Granted it has gotten better.  There was a time where I honestly did not know whether I would allow mysef to live to see the sunrise the next day. (Though, I do stay up late and rarely ever do see the sunrise, but its a metaphor...relax) 
I do not have very many friends...and several of the friends that I do have live in Wisconsin.  No that's not Timbuktu, but it kind of is when you don't have a car.  I have my family and I typically stay with either Jason or John once or twice during a 4 week span.  But, this is still not a lot of socializing considering that I don't have a job, so I am home a lot.  
I can usually deal with being home on the weeknights because I figure most people are too.  The weekends, though, are supposed to be the time where you go out and be with friends.  And, I, I am here at ten o'clock sitting in bed writing a blog that nobody will ever read.
Summed up--Life really sucks right now.
I guess I am not your typical cancer survivor.
 

Tuesday, April 28, 2009

It's like deja vu all over again

I know I have said this before, but I really want to write on this stupid thing.  I don't know why I never do.  All I can say is that I will keep trying.
It has been a few months since I have said anything. A comment from a beloved nurse down in Boulder reminded me that some still care about me and wish to know how I am doing.  Major updates are: I got a new hip.  This is the second hip replacement I have had.  This time it was the left hip.  This surgery went much better.  During the surgery on the right hip the doctor split my femur in half.  Because of this the recovery was really painful and I was on toe-touch precautions for 6 weeks.  This means that I was only allowed to a little bit of pressure on my right leg, basically enough to feel the floor.  Fortunately this did not happen on the left.  The left was also a surface hip replacement, rather than a 'spike' THR.  I  can now fully walk on it and the pain has deminshed significantly.  
This is not the end of my problems.  My knees hurt really bad and my right shoulder is very painful and it cracks when I move it.  The problem not on the agenda, however, is my left elbow.  It started hurting about 10 months ago, and got much worse about 3 months ago.  After several x-rays and MRIs, it was decided that I needed a hemi elbow replacement.  This means that they will be replacing the part of the humeral bone closest to the elbow.  I have seen two doctors about this.  The second one had me get a CT, to see the damage to the surface more closely.  I went back today and she said that my scan was impressive.  Unfortunately, in ortho-talk this is not good.  It showed that the bone has completely collapsed and that there is no round, smooth surface on the bone.  She was hoping that the damage wasn't too bad and that we might be able to explore other options than the elbow replacement.  There are no other options.
Despite this ruling, I am going to have a third opinion.  I will be going down to Mayo next monday to have a surgeon down there look at it.  My second doctor, Dr. Adams, trained down there and has said that the Dr. I will be seeing has written the textbook on elbows and elbow replacements.  She doesn't think he will say anything else, but she feels it would be well-worth my while to go see him anyways.
On the personal side, Sara and I are still separated and it looks like we will remain so.  We actually no longer speak.  I am less depressed about it...I guess time does heal all wounds.  Though I wouldn't say I am anywhere near healed.  The wound is still pussing and bleeding, but a scab has begun to form.  I wish I could get an infusion of platelets to help, but alas it doesn't work that way.  What doesn't kill you, right?
There are times I really miss her terribly and all I want to do is hear her voice, but I know that this would only make things worse, as I would probably say something stupid.  I am no longer in love with her, but I do love her alot.  I miss the human touch most.  I know that I will get this human touch again, and that is not so much singular to her, but the way that she touched me could sustain the fire of a hundred men for many years.  I also miss those quirky things that were unique to her.  Her eyes, her smell, her fingers, her ...
I wish that I still had close female friends that I could cuddle with...I am very tactile and not having a little of that human touch, to quote the Boss, is killing me.  Any takers?  I think my goodest friend S. would say that all guys say shit like this and all they really want is to get in the girl's panys, but I trully just want to sit on a couch with a blanket over each other, legs entwined and read a book, or spoon watching a movie.  I would kill to have someone rest their head on my shoulder.  I am the man who would hire a prostitute to just cuddle.  I haven't don't worry.
I truly miss her family as well.  I love them so much and they have been so nice to me (though we did have our problems too I am not trying to revise history). I miss Moe, I miss Joel, and I deeply miss and love Elsa.  It breaks my heart that I will never be able to become their son.  Something that I wished for deeply.  It burns me that some other man will take my 'spot'.  
It woould not surprise me if Sara was already dating someone.  She is so beautiful and young and intelligent and caring and all-around amazing.  But, I don't want to know...I really don't, though I am curious about her life, I don't, DO NOT want to know that she is with someone else.  Surmising that she is is very different from knowing.  Of course I want her to be happy, but I would hope that the almost seven years we were together would be harder to 'get over' than 6 months.  Plus, just the thought of some other guy...makes me want to puke.
As for me, I am nowhere near ready to date.  As you can plainly see I am not even close to being 'over' Sara.  I also need to figure who I am post-cancer, post-Sara and this has not come easy.
I guess this enough for now.  If anyone does happen to see this and you are someone from my past, be it nurse, Dr, friend, classmate, whatever, please let me know how you are by either comment on here or sending me an email at followthebreath@hotmail.com
Thanks and I love you all,
JJ

Monday, January 19, 2009

New Life

I just celebrated my three year anniversary of my BMT. A lot has happened since the transplant. From the high doses of prednisone, a part of the treatment used to kill the leukemia, I got a new horrible disease called osteonecrosis and avascular necrosis. AVN depletes the oxygen supply to the bones, mainly around the joints, this causes the bone to die. As a result of the bone death, the bone cannot sustain the pressure put on the joints and they collapse. This causes extreme pain (it is recognized as the second most painful illness [after osteosarcoma]) and the only remedy is to replace the joint. I have already replaced my right hip, left shoulder and have had numerous surgeries on my knee and back. I will be getting a new left hip in the next few weeks. After I recover from that, they will replace the right shoulder and my left elbow is quite painful and limiting. Both of knees will eventually need some work. All of this has been very difficult, both physically and emotionally.
Adding on to the emotional toil, my love, Sara, has left me.
I am hoping that no one that used to read this blog will look at this because I am basically going to use it as a journal/bitch fest.
JJ

Tuesday, January 09, 2007

Why does the good news always come with some bad

I had my one year post-transplant check up and biopsy. The good news is that the biopsy were results were great. I am still cancer free and will likely remain that way. I am still experiencing pain in my back and legs and am currently sick with some kind of cold that wants to move into my lungs.

That bad news is that our beloved Cat, Tara, died on Monday, January, 08th. She was such an integral part of our lives that it is hard to imagine what the future holds without her. We are both very torn up about her death, but luckily we were able to be with her at the end and her passing was a very sacred moment. I will cherish that moment forever--knowing that I could comfort her and look into her eyes and tell her that I loved her the moment she died. We then cleaned her up and sat with her for a long while. the rest is private and belongs to Sara, Tara and I.

Love,
JJ

Sunday, December 17, 2006

Summer-Winter 2006 Reading List

Summer- Winter 2006 Reading List

(In no particular order)

Finished

  • Break Through Pain by Shinzen Young
  • The Four Noble Truths: The Foundation of Buddhist Thought; Volume I by Geshe Tashi Tsering
  • Dawn by Elie Wiesel
  • Freedom in Exile: The Autobiography of His Holiness the 14th Dalai Lama
  • She Still Lives by Bill Magee
  • Goblin's Market by Christina Rossetti
  • Letter to a Christian Nation by Sam Harris
  • White Noise by Don DeLillo
  • A Heartbreaking Work of Staggering Genius by Dave Eggers
  • Buddha: Volume One, Kapilavastu; A Graphic Novel by Osamu Tezuka
  • Buddha: Volume Two, The Four Encounters; A Graphic Novel by Osamu Tezuka
  • Buddha: Volume Three, Devadatta; A Graphic Novel by Osamu Tezuka
  • The Pearl by John Steinbeck
  • Bone in the Throat by Anthony Bourdain
  • How Soccer Explains the World by Franklin Foer

Friday, December 01, 2006

My top 15 Favorite Songwriters of all time...

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

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

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.

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...

My idea of Hell


Or is it the Twilight Zone...

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

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...

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

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

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

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

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/

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