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Wednesday, March 30, 2016

What You're Doing

Dealing with cancer and (resulting) chronic kidney failure has caused me to think about a great many things. One thing we do as people is make judgements about our situation based on what's happening to others. Keeping up with the Joneses and so on. Being put into the class of people affected by cancer or kidney failure is no different.

Comparisons are unavoidable, it's part of us. If you observe someone going near a tiger and they get eaten, you learn you shouldn't go near tigers. Or if someone's having better luck with another doctor or different treatment, you might switch. However, reacting to certain situations can be morally dicey: if you hear someone's chemo isn't going well, do you think, "Thank God that isn't me."? Or, if they got a kidney transplant and you're still on dialysis, "The lucky bastard."?

When I was a kid a neighbor told us a story about when he once donated blood; and when he was done, he was sitting there waiting to leave (undoubtedly eating cookies!). When he observed someone else having difficulty with his procedure, he (probably naturally) thought "I'm glad that isn't me." Shortly afterwards the other man joined him and they struck up a conversation; my neighbor was really impressed with him. He felt guilty for having thought that in the first place; that was a real person.

I consciously try to avoid comparing my situation to those of my fellow patients, whether they're cancer or dialysis patients. I mean that I avoid self-value comparisons, precisely because it's pointless. I derive no joy from others doing worse than me, I'm sad about it; and I don't get down if I think someone's doing better, I'm happy for them. Bottom line is: my situation could be much better; but, it could be worse, much worse. And nothing happening to anyone else can change it.

When you go through a crisis like this, it can negatively affect your self-worth, your self-image. I believe your self-worth is not dictated by your situation, but rather your self-worth dictates how you deal with any situation. Cancer can take your hair, or make you lose 50 pounds, puke mercilessly, give you industrial strength diarrhea, and generally make you feel like crap. Kidney failure drains you, makes you anemic, dialysis gives you leg cramps, deprives you of sleep, limits your diet, and your freedom as a person. You can pretend it doesn't affect you, but it needles at you, trying to work its way in.

I lost a lot, most of which isn't coming back. I railed against this reality for a long time, but eventually you cut loose the old reality and accept the new. We're often so caught up in what we're doing we don't really take the time to think about it, but we often gravitate towards the edge of our sphere and wish it was something it isn't. Some of those changes you can make (which doctor(s) do I choose, what food do I eat, and millions of other decisions); but some are made for you. Some stretch your sphere, some deform it, and some like these burst it and you must create it again.

I think importantly all this brings me closer to acceptance. I mean that in the sense of the commonly known stages of grief. I've been though them all, and I'm trying to open the door to acceptance, to peek in, finally to walk through and slam it shut behind me. Coming to it has been possible by the stability of my conditions and persistence of my remission thus far; and the guidance from my family, church, friends, and neighbors.

Early on I didn't think of dealing with cancer and kidney failure as entailing the grief process, but it definitely does. My pastor pointed this out early on; and I understood, but only as an idea. I looked at those Lily Oncology books, and seized on those images of darkness, and paths into it. Now I've walked though it, lived it, and I'm searching for the way out. There's no timetable or short-circuiting the process; there's no picking what stage you're going to be today.

It's just a journey you have to make; it's what you're doing.

Thursday, March 17, 2016

There's no "I" in Wife

If I was the woman and you were the man

Would I laugh if you came to me
With your heart in your hand
And said, 'I offer you this freely
And will give you all that I can
Because you are the woman
And I am the man?'

-- Cowboy Junkies

Oh wait, yes there is. But, look closer, and there's more importantly a "we" in wife.

We all know the saying, "there's no 'I' in 'team'". Meaning: to be part of a winning team, you have to put the team first. Of course, there is "I", there is only "I", and teams are made up of them. However, to achieve something more than what is possible alone, cooperation and dedication are needed.

About a year ago when I was talking with my pastor, working through this whole situation, he said he observed something about my wife and me. He said he noticed that we use the word "we" when describing what's going on. We have to do this, we have to do that. We're waiting on this test. And so on.

It's true. I got put into a club (Cancer Patient) I don't want to be in, and my wife got picked as captain for a team she doesn't want to be on (Cancer Patient Caregivers).

I'm lucky (and grateful!) to have a wife like her. She's endlessly researching, and reading articles, coming to appointments, watching prescriptions, listening and talking to doctors, setting up dialysis equipment. She's trained as a medical technician (Med-Tech) with special interest in microbiology. It's good to have her watching over everything because as a patient sometimes you're "lost in space".

As a patient I think you need a caregiver. Without one your journey is so much more difficult, if not impossible. It's hard enough for me to work full time, show up for all the appointments, do dialysis, have a life with kids. Doing it myself would be orders of magnitude more difficult.

Being a caregiver like this is something I've witnessed first-hand, but I don't know how she does it. She's busy running her own business (which she had to put on hold for a year) and now extra busy with the kids and a household. She has the added responsibility of aiding (care giving) her elderly parents. Both our times have been compressed, with this always stealing it.

This is not easy on a marriage. You say, "for better or worse", but this is way worse than what you pictured. You thought they meant arguing about hanging wallpaper (which is a kind of "worse" to be sure). Then something like this hits. How could you picture this; even if you did, it's all just theoretical, and easily brushed aside, until it happens. When it does happen, that's when the team either comes together or it doesn't. There is "we" or there isn't.

Nobody gave us the "there's no I in team" speech right then and there, but we figured that out. Really somebody did give the speech a lot earlier, especially as it relates to marriage:

“But at the beginning of creation God ‘made them male and female.’ ‘For this reason a man will leave his father and mother and be united to his wife, and the two will become one flesh.’ So they are no longer two, but one flesh. Therefore what God has joined together, let no one separate.”

Mark 10:6-9

  • It's hard on a marriage because the Caregiver is caught up in the melee. Most everyone else can go home for the evening, but not them.
  • It's hard because you have to confront issues you don't want to confront. It's a cruel reality, but you feel urgency to plan on what to do when one (or both) of you is no longer around.
  • It's hard because sometimes the patient feels like he can't go on, needs to give up, but you can't allow it.
  • It's hard because your life's been put on hold or drastically re-ordered because of something that happened to somebody else, but that somebody is so wrapped up in you, it's like it's happening to you.
  • It's hard because the one you love is enduring things you wouldn't wish on your worst enemies and you can't fix that.
  • It's hard because you feel guilty for taking a break, for wanting a break.
  • It's hard because you know time could be short, but the one thing you're short on is time to spend with each other.
  • It's hard because there are no famous, inspiring speeches about caregivers, even though they deserve them.

I once told my wife I wouldn't blame her if she left, to salvage her own life, get away from this: I have no choice, but you do.

But, she has no choice, either, she says;
 love is cruel this way.

I can't possibly even sum up my marriage experience here for you, all the years of better and worse and in-between. This illness is only part of that story. Hopefully you get the picture: there is only love and "we", and thank God for that.

I sometimes think back to that day we got married on a sunny day in Raleigh, NC, in a small ceremony at a friend's place, underneath a pecan tree. These are some of the vows we took:

I am living to nourish you, cherish you
I am pulsing the blood in your veins
Feel the magic and power of surrender to life

We are we. If you can find a wife like mine, grab her and don't let go.