The Dreaded Diet
Every time we are faced with a new obstacle, I feel overwhelmed and pissed off and sad and convinced that this one is it, this is the one that will bring us down, that will change who we are, who he is. And every time I’ve been proved wrong. Every time we’ve ended up okay.
I’m hoping the same is true this time.
I am furious right now about the kidney. I’m not mad at anyone in particular, I know it’s no one’s fault, and yet I’m mad at everyone. I’m mad at our doctors for giving chemo and radiation even though I know that’s what’s saving my child’s life. I’m mad at myself for not keeping him super-hydrated all the time at home (even though no one ever told me to). I’m mad as hell as the nutritionist who handed me that absurd pile of papers today describing the “renal diet.” I’m really really mad at the renal diet itself, as that is the current source of all my anger and frustration and worry.
I know, silly, right? It’s a diet, just recommended lists of foods to enjoy, foods to limit, and foods to avoid. But it is so terribly restrictive and, as contradictory as it sounds, so unhealthy. Take for instance, that fact that I can not give Austin whole wheat anything, but instead have to resort to white: white bread, white pasta — stuff my kids have barely ever had. I’m no perfect mother feeding her children all natural health food all the time; in fact, I often find myself plagued with guilt and worry that their diets consist too much of “kid-friendly” junk food. But I at least give them whole wheat bread!
But no, now he can’t have bananas or tomato sauce or cantaloupe or raisins or edamame beans or even baked beans. And the real kicker is that my Austin, who survives almost entirely on cheese, yogurt and milk, can now have no more than one cup of dairy — including soy — each day. Oh, I cringe when I imagine the battles that are going to take place in front of our refrigerator as he gets used to this.
But we have got to protect that kidney. We have got to do everything we can, even have knock-down, drag-out, biting-mommy-on-the-shoulder-until-she-hands-over-my-muenster fights in front of the fridge to do that. We need it to last two more years. At least, at least, two more years.
I was rereading some of my earlier posts, written in December as we were preparing for chemo, and I was struck by how pessimistic I was about the whole thing, by how very worried I was for all of us, certain that we were on the verge of disaster. And then I was struck again by how much better these past few months have been than we thought they would be, by the fact that we are still a happily functioning family, by the fact that my boy still races around with a smile on his face, full of energy and light and laughter.
Today in the hospital playroom with two cans of shaving cream: pure joy.
So maybe the renal diet will be the same way. Maybe I’ll find new recipes online and we’ll toss the string cheese and Austin will just adapt. And maybe, just maybe, the little kidney that could will do some more.
Please never forget that medicine is more an art than a science. The power of keeping your son positive may be the path to keep you going as well.
Krissy,
Yes, medicine is more art than science. That topic worth much discussion.
Would love to have the list of allowed foods. Would like to undertake the challenge of inventing kid friendly allowed dishes.
With sympathy for your newest challenge, Georgia
Krissy,
It isn’t silly to be mad. It’s the most understandable thing in the world. A renal diet, on top of everything else you’ve had to do? Frankly, I’d have a hard time understanding someone in your position who *didn’t* once in a while want to scream obscenities, throw things, and then just crawl into a corner for a while (maybe with a stiff drink!) and say “Screw it, I’m done.”
But of course you won’t. You’ll power through and come out the other side, because you have to and because you always have. And I’m sure Austin will adapt and eventually be fine with the new diet, just like he’s adapted to everything else. It’s just beyond words unfair that you have to. And imho, it’s OK to get pissed about that sometimes.
xoxoxox
Krissy, it’s “normal” to be angry. I remember with Abby going through chemo and radiation, I was angry if I had to weight an extra two minutes in the grocery checkout line – in my mind I’d be screaming – “don’t you understand, my child has cancer, I can’t be wasting my time waiting in this line – move it, and fast!”. You just can’t sit there and blame yourself for any of this – for example, I’m sure you hydrated Austin plenty when he was home – and I’m sure you’ve done and said all the right things – not just with Austin, but your whole family. So now, you just keep going. And I agree completely with the previous commenter, medicine is so much more an art than a science – as a physician – I see this all the time – and sometimes it’s hard to explain exactly why I do things one way for one patient, and another way for another patient – it’s the whole gestalt of things, and then more. You’ll do the renal diet – you’ll stick to it as much as humanly possible, you’ll keep the hydration going, and you’ll see where you’re at with this. That precious little kidney has been through a lot. And it will keep going as much as humanly possible. And then you’ll see where you’re at. A lot of people are hoping and praying and cheering you all on – just remember that!
Barbara