A Leviathan Returns?

Yesterday I restarted my bi-monthly hyperbaric treatments. I was really hoping it would have the restorative powers it often has had in the past. I needed a kick. Only it was not to be. I am either still quite felled by heartbreak, or what I truly do not wish for has happened.

My past three monthly blood tests to chart my GFR numbers (which thankfully have remained a steady 46) have shown a development that I have been quite the head burying ostrich about. The protein levels in my urine have been steadily rising. What does that mean? Well due to my history it seems the most likely cause is that I am no longer in remission: my Lupus is back.

Just typing that seems too much to me. I have an overwhelming desire to just run away from the computer, and if there was not a torrential monsoon downpour out right now, I likely would.

After the success of the chemo I was sure I had made a deal with my body. I would treat it well and it would keep my Lupus locked away in my DNA and out of my blood. It would leave it where it did me no active harm. Now I am afraid my body did not listen to me. That it has reverted back to trudging on without a care for my wants/needs.

After two solid years of the Lupus being driven from my body, I had gotten quite used to it being gone. I let myself believe that it was gone for good. I let myself believe that I had bested something, one thing, that was consuming my body. It was a major victory. It left me in such a better place both physically and emotionally. I felt like a warrior who had slayed a dragon. I opened a door that read possible and never looked back.

But now….
Now I feel like I walked though a door of unlimited potential only to find me butting up against a horizon that never moved. A wall, I could not see.

My doctor said when the first indication came in 3.5 months back that it was likely nothing, but he would monitor it carefully. I thought nothing of it and went about my way even forgetting all about this. Well until the next month. Again the levels rose, I started to become concerned. I had believed it would just go away. But it did not. It rose again. Faster than the month before. Then one month later I got tested in Cambodia. And while it amazingly cost me just over $5, they were unequipped to do all the tests I needed. So I had to wait 15 days till I returned to Thailand to get the latest results. By this time I was worried. I asked them to send the results directly to my doctor as I could not deal with the moments of wondering looking at the stats until he replied to me. I needed to know but I certainly did not want to know. My gut told me they would be bad.

And when I got the message from my doctor, I let it sit in my inbox for over a day. And when I did read it I wished I had not. I read this line over and over again, till it was burned into my retinas: “If it continues to rise at this level next month, we will have to work on the assumption that the lupus is back.” My heart started beating all irregular. I thought this must be what it feels like to fall off a cliff trying to think of a way to avoid impact.

I did everything to avoid thinking about it all last month. It did not work. To cope I returned to the water & food consumption directions that my renal dietitian gave me. The ones I had earlier in the year tossed out as balderdash as I was not getting any worse and losing weight at such an alarming clip. The ones I totally ignored. They now seemed sacrosanct.

I even purposely set up my vitals test for the last day of the week to prolong not knowing, plowing my head deeper and deeper into the ground.

All this is clearly effecting my mental health something awful. The person who opened that possible door and leapt across the threshold last year and kept running all this year seems to be hibernating and I am left with questions that will only prolong this state: What happens if it goes from “it is possible your Lupus is back” to “your Lupus has returned”? How will I cope with this? How can I cope with this? How will I be able to marry prolonging the life of my kidneys with fighting the lupus?

I asked my doctor this exact question only to receive the less than reassuring response along the lines of “lets wait and see if it is back for sure before we worry about that.”

So now I sit here in a cafe on a Saturday afternoon, dodging a torrential downpour, visibly counting the days on my fingers till i know: Sunday. Monday. Tuesday. Wednesday. Four.

And just like that I have another huge variable to account for as I plan my future. A variable that only makes sense with the value of hopeless. See just how much this is effecting my mental health. This is who I used to be. Not the person I have become.

I spent last night and most of today vividly remembering the days I waited for the results of my kidney biopsy last June and the days of utter despondency when I found out just how far along my kidney failure was. That despondency is echoed today. I feel overwhelmed by it all over again. At least then I had friends nearby who made sure I was not sinking past the point of no return. Even as I disengaged from them even more after I got the word, as I realized I had to change everything and leave, seek out a better future, they were there to physically support me. Now I feel all alone. I feel like I am finally being tested to see if I am as strong as I have always presented myself as. As I think I am.

Being an ex-pat is extremely hard in this way. You meet people, share intense experiences with them and then move on. The foundations of friendship are surely there, but the emotional attachment one needs is absent. I never knew how hard it would be to not just pick up the phone and call my friend Matthew, which I have done pretty much at least weekly for the past 20 years.

So am I supposed to prove to myself that I am as strong as other believe me to be? How? I am no longer that hard ridged individual that ushers everyone out when something hard or serious is about to happen. I am no longer that person who refused people’s help/support when I underwent chemo or even when I got my kidney diagnoses. I now deeply regret that I did not allow people to be around me during those exceedingly hard times, or any of the many other situations I closed myself off from help. I used to draw my strength from a stoic version of individualism that made my Germanic roots point and laugh as even they thought it was all a bit much. Now I need people, and I just do not have those I need nearby.

And if I am flipping out now with just the potential of my Lupus being active again, what will happen if, as I truly suspect, I get word that it is back and this ______________ is what we need to do? That I am even questioning this out loud says quite a bit about how much this worries me. Normally my worry is done completely in my head where it can not bother anyone but me. But this worry has engulfed me too much to let it continue to ricochet and damage my insides. I had to let it out.

So sometime on Tuesday or Wednesday I am expecting a message that I really want to avoid. But as I learned when I avoided going to the doctor for years, as the Lupus swelled within me and its wolves consumed my kidneys, stalling is not the answer. Not confronting this is akin to disaster. So here I am at ground zero, waiting for the bomb to fall… not fun, but necessary.

I will let you all know what I hear.

About Randy

I'm just a guy trying to out run his dying kidneys and live life as vibrantly as possible. Until I can't. I grew up in Tejas. Went to school in Vermont. And currently live in Brooklyn. But not for long....
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6 Responses to A Leviathan Returns?

  1. kim says:

    You are not alone, Randy. You are dearly loved by many people and we are all with you now.

  2. Denis says:

    Randy, lots of love coming from Brooklyn. Hope you can feel it.

    • Randy says:

      thanks for this denis
      tried to avoid thinking about it all day by filling my day. did. not. work.
      very frustrating.
      i also realized i might not know till thursday due to time difference.

  3. Catherine says:

    Hello there fellow human, Randy. I empathize with your fear, pain and confusion. My thoughts are with you as you face the day’s struggles (hopefully you are just facing them one day at a time – much easier) You seem to be a very intelligent man, so without seeming to lecture, may I recommend an author who I’ve returned to again and again? I think you would connect with the messages of Hugh Prather. His books Notes to Myself and How to Live in the World and Still Be Happy have been helpful and comforting to me on my journey.

    Kind Regards,

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