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