Sunday, October 18, 2009

You'll Never Get To Me

It was about this time of the morning five years ago when I received a very important call. I was at work on a Monday morning trying to figure out how I would get through the day. At 11:30, I was scheduled to head over to the dialysis clinic a few doors down from my job for another round. On that morning, I didn’t think I could do it. A few months prior, I had made an agreement with my transplant doctors that I wanted to try an aggressive treatment to try and increase my chances of finding a match on the transplant list. During the two and a half years I had been a dialysis patient, I first had to wait 18 months before being eligible for transplant, due to the cancerous tumor ridden kidneys I had had removed. Once they determined that I was cancer free, I was put onto the list. This was an amazing relief. I finally had something to look forward to. The team at the clinic was always so positive and upbeat, convincing me that it would only be a matter of time before I would get a chance at a kidney. They gave me a beeper and told me to carry it around with me at all times in case that call would come. It could happen at any time!

That first year and a half on dialysis was a complete nightmare. When I had my kidneys removed, I woke up in ICU and the entire world seemed like it had dulled like my life had been shifted slightly like a radio station just off its channel. I was released from the hospital the evening before Thanksgiving 2001. But the holiday did not inspire much confidence in me. I was so weak that I could barely make the 5 minute car ride to my brother’s for the family dinner. He had moved his girlfriend and their cats down from Seattle, just so he could be closer by for me. They were serving a seriously deprived of flavor or options Thanksgiving dinner just because of my condition. This filled me with guilt, or would have if I could’ve done anything besides lay on my back on stare helplessly at the ceiling. I had gone into this deal determined not to let it run my life, but here I was nearly comatose and ruining everyone’s lives around me. The following year and a half were filled with emergency room visits, serious infections and bad moments during dialysis, but somehow, little by little, I began to feel stronger. I managed to return to work full time, even with 4-5 hours of dialysis three evenings a week. I was able to make some trips like a couple of the March Madness trips with the crew and to Hawaii for Wil and Carrie’s wedding. I was even able to go out and do some activity again, like swimming and golf. All I had to do was get to the 18 month mark.

This was the progression. Always looking forward to and trying to ignore the daily struggle. Once I had the beeper, an entirely new set of problems arose to join the ones I was already experiencing. Damn it if that beeper didn’t start going off on a regular basis. I would quickly call the numbers that would appear and inevitably, it would be some girl who was trying to reach “Ted” or “Johnny” or whoever. Or it would just be a bad number. I started to dream about losing the pager or not being able to dial or read the numbers on the display. This is why I decided I had to break down and get a dreaded cell phone. During the first 6 months of being eligible for transplant, many of my friends went in to the clinic to get their blood tested in an effort to possibly be a donor. This was both an amazing honor and a major source of guilt. I did not want to have anyone go through surgery on my behalf. However, I also did not want to stop them either. In the end, no one matched. This is when I discovered that my blood panel was not matching with any of the kidneys that came and went through the mysterious list. They called me in to let me know that they were no longer very positive about my prospects. Maybe it was due to the 9 units of blood I had once needed during a hospital stay years prior, which creates antibodies, which are not good for donor recipients. This is when the decision was made.

The plan was to wipe my immune system out to help increase my potential for a match. By this time, though I was doing pretty well for the average dialysis patient health-wise, my body was suffering. I had dropped down to about 145 pounds and was losing stability and strength noticeably by the day. I felt like I had to go for it, because I was deteriorating and I was losing hope. I started taking the immune suppressant drugs they normally give to patients post transplant and they started me on monthly treatments, which if I remember right, were designed to clean my blood of its natural defenses. I would sit in a small room on non-dialysis days hooked to an IV and stare and try to sleep. This was something that was getting more and more difficult to do, which didn’t help my state. From the dialysis I was always itchy and twitchy and uncomfortable. I would read books all night (thanks to Ann for the stack of transformative books on loan!) or listen to music and then watch a few hours of the repeating early local news before heading to work. And it was one of those early mornings at work on October 18th, 2004 when I placed my head on my desk for an intended moment out of complete weakness and fatigue. My manger passed by my office on his way in for the day and asked if I was doing alright. For the first time, I told him that I couldn’t do it anymore, that I didn’t think I could make it through another round of dialysis. This was before I summoned up as much strength as I could and tried to shake it off and pretend that things were really okay. Another hour or so passed and my phone line rang. I answered it casually, because it was my direct line and only co-workers and family and friends had known that number. It was my transplant coordinator on the line and it didn’t faze me. He was very quiet and spoke very slowly. I assumed he was calling me to have me come in to have more labs done. Slowly it began to dawn on me that he was telling me that a kidney was available for me and I went in to shock. He gave me instructions on what I needed to do and told me to immediately go to the hospital. I set the phone down and actually finished the item of work I was doing. I sent an email to a bunch of my friends that the call had come and phoned my family and then went to tell my boss. That was it. I was on my way and was in surgery before noon.

Now that I’ve bored anyone that has read this far, including myself, I’m not sure where to go with this. It is a momentous date in my life. It’s Eric and Ann’s anniversary for one (Happy Anniversary kids!) and I have a putter with their wedding date on it leaning against the wall next to me to remind me. Oddly, it is also the name and date of a briefly annual series of mix tapes I made during High School. From 1986-1988, on October 18th, I made a mix tape for my own enjoyment and for some reason titled it simply “October 18th.” I made another one in 1991, after my mom passed away. These tapes were boxed away for years and forgotten until a few months before the transplant. Due to many nights of sleeplessness, I began rummaging through all of my things late at night sometimes. My goal was to get my things organize and to shed my clutter. I think subconsciously I was shedding extraneous stuff in case I never did get the call. This is when I discovered the four old simply titled tapes. I enjoyed hearing them again and recalled how I was trying to capture a certain vibe – a welcome to autumn thing, or a rainy day feeling. Needless to say, I started the series again (now mix-CDs) in 2005 to mark the date. I need to make one today to mark the occasion.

Speaking of music, those months leading up to the transplant were rough, but I absolutely lost myself in music. One song in particular stands out. Jeff introduced it to me late in 2003. The song is “You’ll Never Get To Me” by the post-punk stalwarts, Killing Joke. I had kind of forgotten about them, but suddenly they arrived with a self-titled album full off angry political anthems and this one song that instilled me with such resolve and hope. Here are the words with the chorus only at the end along with a link to the song:

“Sea of hurt, I feel the waves of pain
And now the tides come in again
I'm caught in a vicious cycle of despair
Give me the courage to face another day, oh!

I sat in silence, I was mourning
I said sorry a thousand times
I cried aloud to God from all my failings
But God seemed deaf as well as blind, oh!

We drank and smoked and talked until the dawn
We shared our problems and our food
Telling tales of courage and resolution
Through all the hardships we'd endured, oh!

Oh, sing a song of joy
Sweet childhood, never desert me
Time for celebration, oh!
Overcome with a sense of elation
I'll never let you get to me
Survival is my victory
Time for celebration, oh!
Overcome with a sense of elation”

This also leads me to where I’d like to go with this. I want to send my endless thanks and appreciation to my friends and family for helping me survive the dialysis years in order to be able to celebrate this 5th anniversary. So many people stepped forward to offer me a kidney and even tested to go through with it. So many people came to spend time with me in hospital rooms and dialysis clinics or just came to spend time with me. Sometimes too many! There were a few times when I had so many people in my hospital room or dialysis chair that I was worried they’d all get thrown out! I don’t know if I would’ve made it through my first month without kidneys, let alone those 2 years and 11 months. I just hope that someday I can repay all of you. Thank you.