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.

 

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

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

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

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
• 
  

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

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

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 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...

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