Reflections

It is starting to settle in how different my life is now. In just 13 days my life has gone from “can’t” to “let’s do it”. Restrictions on diet, travel (the extension cord is only so long), and countless other things that I had long dismissed as just not possible are now doable.

The big one is no more dialysis. It has finally settled into my mindset that I am done for dialysis. At least for a while. The goal is 15 years and I’m going to fight like a cornered Wombat to reach that goal. I hated dialysis and that is enough reason to prolong going back to it as long as possible.

When I first started dialysis I was the model patient. I walked in with my characteristic “proud peacock” walk, sat down with a book for 4 hours and then strutted out again (sounds cocky but that’s how people see it so I guess I have to go with it). The treatments didn’t kick my ass as it did some other patients. The older and seasoned (to be fair I was one of the younger patients) patients looked at me with jealousy. On a side note the walk or strut that I have become known for is not new. When I was a Cancer patient back in ’97 I overheard another patient remark “what’s he doing here? He looks like a fine specimen”. And I was, I was going to the gym right after radiation treatments and I was in good shape. But I was 31, at 56 I still have that walk. Anyhoo, I made it a goal that I would never get to the point of deterioration that most patients do. There are a few who always looked good, I’m not saying I’m the only one. But eventually I did anyway and I hated myself for succumbing to it.


First came the sepsis/near death infection episode 2 months in. I almost died, no exaggeration. But I bounced back from that. I cruised for about a year until I hid a bad stretch of infections and diet-related complications. On a Renal diet even healthy foods could be taboo. A tomato, a healthy food contains Potassium. Without a functioning kidney to process it it may as well be rat poison. I see-sawed back and forth between too much and too little Potassium, Phosphorous and Magnesium, just to name a few. Sodium and fluid restrictions, if ignored would mess me up for weeks. I never really got those things under control despite uncharacteristic attention to my diet. It got to the point that I was hospitalized several times and the actual treatments became so uncomfortable that I was sometimes unable to complete the treatment. Imagine having a reaction to Phosphorous in which I was itchy all over, the itch would pop up like a whack-a-mole and it was so bad that I was thrashing in my chair. Imagine being held down and being tickled with 2 1 inch needles in your arm. It was miserable. Towards the end I was everything I detested in that room, I was just like the others. I must be an arrogant fuck to think that it wouldn’t. In short it sucks.
I heard yesterday that one of my friends there chose to stop treatments. He was dead in a week. It happens more than you want to know.

One positive is that I really love my dialysis nurses. I think they do God’s work and I appreciate them. They did more than stick needles in my arm, they   my welfare and genuinely cared about me; first in making a very difficult transition for me easier and then keeping me on course when confronted with challenges. Of course, I can only speak for myself, but nurses have a special place in my heart. I plan on visiting them when I am able and thank them for everything they did to make it to where I am today.

One nurse I am particularly fond of is Jesse. Jesse is one of the youngest nurses at the clinic and I have felt a special chemistry with her since the day I met her. We share a devilish sense of humor which is tampered by the strict codes of conduct in the clinic regarding patient interaction. Still, we manage to have flirty and somewhat sexy conversations in sneaky ways, even the exchange of glances or funny faces. I loved it when she was there, it made the time pass a little better. It’s safe to say that if there wasn’t a clinic policy against dating patients I would have asked her out.

Now I can. And of course, now that I can I’m seeing someone else. No regrets, Lisa is awesome and I’m nuts about her. And there are considerations with Jesse that make me reticent even if I was available. She is much younger than me, almost 15 years younger and she has small children. I’m not sure that I have the patience for young children and I also wouldn’t want them to get close to me and then not be there one day because their mother and I didn’t work out. Jesse and I talked about it. We had discussed covertly a few times about the possibility of dating and it was always “get a transplant and we’ll talk”. So we did. I put it all on the table and as it turns out she doesn’t want a relationship at the moment. She works a lot and spends every available free moment with her girls. As it should be. She’s a great mother and her girls are very sweet. She’s doing a great job as a mom. I don’t know what the future holds but I look forward to hanging out with her as a friend over coffee or lunch. As with everything in life, you never know what’s in store for us but it helps to be ready when opportunities arise.

the watcher

Today was a really beautiful day at the lake. June has been a bit of a disappointment this year in the Lakes Region. Many cool, overcast days, and the ones that were sunny weren’t very warm. The wind has been persistent as it has taken a hot sunny day and morphed it into sweatshirt weather. If I was a weekend-only resident I would be pretty discouraged, every weekend has been awful but one. I guess I’ve found one advantage to being an unemployed, quasi-homeless piece of shit. If a Tuesday is nice I can enjoy it.

Today I sat lakeside and stared at the magnificent view from our beach. Our housing community offers beach rights to a really nice spot on the lake and it is as close to a sacred spot as I have. I have been enjoying this view for almost 37 years. Previous to that I enjoyed the “Main Lake” section when we were seasonal campers from the time I was 6 years old.

The sun was out in full, there was barely a cloud in the sky. The breeze, true to form, cooled me off every time it gusted. I sat transfixed by the view as if it was new to me.  Light waves, the only remnant of the passing of the many boats entering and exiting the Marina to our right lightly slapped at the shore. I can never get enough of the boats. Big boats and small boats, expensive Cabin Cruisers to Kayaks to row boats with hand-operated motors went back and forth, full of happy passengers. Most of the boats, as well as the elegant houses that lined the evergreen shores as far as the eye can see proudly waved American Flags. I almost felt out of place, for if one didn’t know better it would be easy to assume that this is a place only for those of affluence. Yet here I am.

I look to the raft for the hundredth time to check on the girls. They haven’t moved. My precious 16-year-old daughter, let’s call her B, and her friend Alex, who is like a daughter to me also, haven’t moved. They might even be asleep. They don’t look cold. Good for them I think to myself as I put on my sweatshirt. Billy Mac, I scold myself, I know it’s not your fault, but what is wrong with you?

Fuck you, I’m cold.

 

I have decades of memories of fun times on this lake. I was outside all of the time, usually on or in the lake. I learned to swim on this lake. I learned to scuba dive. I learned to waterski, dropping that one ski and skiing slalom was one of the biggest moments of my life. When I was a teenager I brought my friends up here and we swam and water skied until we were told to get out.

When I became a Dad, I had my kids up here as often as possible. The memories of them as toddlers excitedly splashing in 6 inches of water as we held them, belly-laughing as only a toddler can with smiles as wide as the universe itself, dance in my mind. As they got older, the four of them played together in the water, threw each other off of the raft and begged to stay when I told them to come out. Of course, I was in there with them at that point and it was my wife making me wrap it up. It didn’t matter, we would then play frisbee, throw the baseball and have the time of our lives. The expressions on their sleeping faces in the car on the way home said it all. Of course, I was tired as well, I was active with them.

After a long hiatus, the kids began coming up here again last year. They are all grown, the oldest 3 have jobs and coming up is difficult to schedule. I get it, it was like that for me also at that age. Now that their mother and father are separated, they come up to see me. And we go to the beach whenever possible.

The difference is, I can no longer throw the ball or the frisbee for hours. I can no longer water ski. I barely go in the water because it needs to be 90 with no breeze for me to get wet and not shiver and quake after like a junkie in need of a fix. Despite the repeated calls of “Dad, come on in!” or “Dad, let’s play catch” or “Dad, let’s throw the frisbee” I find myself saying no. I just can’t.

I just fucking sit there.

The fatigue is just too much. And it’s getting worse.

The very idea of walking up the hill to get the truck. so that I may drive down again and load all of the gear is intimidating enough. I have distinct parameters on how much energy I can expend at one time. So. to their repeated inquiries for me to join them I find myself saying “No, I’ll just watch you for now” and then endure the disappointed faces. They know, they understand, they hate how it reminds them that their father is sick. What they don’t realize is that I don’t want to watch, I have to.

The “used-to’s” that this disease has made me embrace are harder to deal with than the symptoms.