Sunday, February 27, 2005

I wish, I hope...

This afternoon is our church's birthday party. In honor of blowing out the candles and making a wish I share the following wish/prayer.

In our church when we share the joys and concerns for prayer each person has a chance to share what is on their heart by writing their joy or concern down on a slip of paper that the ushers hand to me, the pastor. In turn I sort and read them on the spot as a prelude to our shared prayer time together.

Last week one of the pieces of paper was handed in by one of the upper elementary set who wrote: "I hope that someday cancer is as easy to have and get well from as a cold."

Amen little sister, amen.

As cancers go, TC is one of the easiest to cure, for which I am very grateful. However, that doesn't always mean that it is an easy journey to get to the place of health.

Frank has needed to be more diligent this past week of staying on top of the nausea. That means taking meds frequently, the ones that warn you not to operate heavy machinery. He's never been one to insist on driving, in fact given the choice he'd prefer I drove. (I on the other hand would prefer he were driving, so it is a wonder that we ever get anywhere!) He's not even getting on to me for "hovering" when I ask if it is time to take more meds. (For the record, I am not hovering, I have found an aerial holding pattern that we both can be comfortable with.) Our goal is to be able to say he made it through chemo without throwing up. So far so good. I say this while knowing that sometimes even when you have a cold, you do have to feel worse before you can feel better.

Emily Sailers of the Indigo Girls wrote the following song a few years back. It's called The Wood Song. (It can be found on the Swamp Ophelia CD from May of 1994--I was at the Tower Records release party in Atlanta, my friend Sharon B designed the set that the cover picture was taken in...but that is another story for another time...good times, good times.) Here are the lyrics:

The Wood Song
The thin horizon of a plan is almost clear
My friends and I have had a tough time

Bruising our brains hard up against change
All the old dogs and the magician

Now I see we’re in the boat in two by twos
Only the heart that we have for a tool we could use
And the very close quarters are hard to get used to

Love weighs the hull down with it’s weight

But the wood is tired and the wood is old

And we’'ll make it fine if the weather holds

But if the weather holds we’'ll have missed the point

That’'s where I need to go

No way construction of this tricky plan
Was built by other than a greater hand

With a love that passes all out understanding

Watching closely over the journey

Yeah but what it takes to cross the great divide

Seems more than all the courage I can muster up inside
Although we get to have some answers when we reach the other side

The prize is always worth the rocky ride


But the wood is tired and the wood is old

And we’'ll make it fine if the weather holds

But if the weather holds we’'ll have missed the point
That’'s where I need to go


Sometimes I ask to sneak a closer look

Skip to the final chapter of the book

And then maybe steer us clear from some of the pain it took

To get us where we are this far yeah

But the question drowns in it’s futility

And even I have got to laugh at me

No one gets to miss the storm of what will be

Just holding on for the ride


The wood is tired and the wood is old

We’'ll make it fine if the weather holds

But if the weather holds we’'ll have missed the point

That'’s where I need to go


"No one gets to miss the storm of what will be." Sometimes I feel like all I can do is to hold on for the ride. Other times I get to have the illusion that I am actually steering the boat! But for the most part I am always drawn back to that place of the heart that reminds me that I don't want to have missed the point of all this. The prize of growing old with Frank will be worth this rocky ride. About this I have NO DOUBTS. And all told, given the life and death consequences that are on the line, this ride could be a lot rockier. I'm not asking for more, just saying that up to now we've managed; due to the help of so many great, wonderful people.

I'm glad that I get to be where I am, despite the tiredness and stress. Sometimes it does take courage to cross that "great divide" of what we think we can and cannot do. Six weeks ago when asked if I could give the Neulasta shot to Frank my voice said yes while my mind raced as to how I could get out of it and/or find the courage to do it. Ask me today after having watched others poke and prod him, I honestly still don't want to do it. BUT I could, without having to muster much courage at all. I am however very greatful for the nurses in the church who are doing it for him. The wood may be old and tired, but it is not going to break. This is where I want to be.

Tomorrow is a "marker" day for us. It seems funny to say that we've found a "rhythm" within this time of chemo, but we have and tomorrow is a break in that rhythm. It is the first CT scan of many that he will have over the next several years as he is monitored for any additional signs of cancer. (Can you tell I have a long range view of this? And yet it can only happen one day at a time....) Tomorrow's scan will tell us how much shrinkage has occurred in the tumor between Frank's kidney and aorta. We both harbor fears that for some strange reason the tumor will still be huge or there will be more of them. Although all other signs point to it's shrinkage, pain level, tumor markers, hair falling out--ok that last one is not a sign of it's shrinkage, only that he really is getting more than saline when he's hooked up to a drip for hours on end.

This is also the week we travel to IU to see if the urologist there concurs with Dr. D "I can open you up and take snot out, but it would just be snot, and why open you up if we don't have to?" Frank by the way appreciates not having to be opened up if it is not necessary. I will get to do the driving. (yippee) We'll break the trip up both ways by stopping at my parent's home in St. Louis. AND we'll try to rest and relax before heading home because the next week will be the beginning of round three...

To sum up what chemo is like:
The first round is to get the cancer's attention: "Hey you, we're gonna get you!"
The second round is to say, "Yeah you, we mean business, we are after your ass."
The third round is to kill. "Cancer, you've been given notice: now die bastard die."
The fourth found is to kick it and make sure it really is dead. "Stick a fork in 'em, it's done!"

Here's to taken care of business (the end of round two) and to preparing to kill the bastard.

Peace,
Sarah

2 comments:

Andrew Molenda said...

Best of luck with the CT and Markers. I've never gotten comfortable with waiting for the results. Once you been told you have cancer you lose that invincible feeling/attitude. Especially in my case once you've had a recurrence. But that can be a good thing too, it helps me maintain my focus on how special each day is and to rise above everyday BS.

As for the rounds, I think you've got it right. Except that after the 4th round they could've stuck a fork in me because I was done!

When you visit Dr. Foster you should go to the floor Dr. Einhorn is on (I can't remember which one). They have a really cool cancer information center with some good information.

Wishing you the best - Andrew

Anonymous said...

Just wanted to let you know that we're still rooting for you here in Atlanta. Hope the trip is good, the markers are good, and that no snot removal is in your forecast. and Hey! That reminds me of that weird bulb thing the doctors insisted we could use to clean The Girl's nose when she was tiny. Problem was how to clean the bulb after cleaning the nose. eeew. And she didn't like it very much.
Congratulations, also, on maintaining your very own sharps container. I have a huge one in the corner of the kitchen, it's all they had the last time I needed one. Practically bottomless.

Enough meanderings. I love you (but you know that) and we're praying for you here.
shrink! shrink! shrink!
xoxo, bijoux