Tuesday, September 22, 2009

Back to the Grind...

Actually, it isn't a grind, it's a slow drip infusion. I've finished my first post-op round of chemo. Hopefully, it's one down and five to go. The scheduled treatments should end just after Thanksgiving and then I'll have a scan. Clear scan = 3 months of freedom! I don't want to get too far ahead of myself, but the plan forward from there would be scans every 3 months for a year unless something new pops up.

My medical oncologist is still a little reserved. She says that given the number of positive lymph nodes I had from my original surgery, we have to assume we're dealing with systemic disease. Which is why we're going for the 6 rounds of chemo post-surgery. Hit it hard, knock it down, try not to knock me down in the process. Then wait and see. It's hard for me, I've always been such a planner, I want to know exactly what I'm going to be doing next January, next March, next June. But cancer just isn't something you can plan around. If nothing else, it teaches you to be thankful for each day because that's all any of us have for certain.

The biggest dilemma for me now is figuring out how to balance the chemo side effects with the positive effects. I've already had 11 rounds of FOLFOX 6. One of the drugs in FOLFOX is called oxaliplatin and it causes nerve damage. It builds gradually over time, but I'm having progressively more numbness in my hands and feet...a few balance issues (high heels are out!), trouble with buttons and pens.

I've already had more of the drug than many people are able to tolerate. With some people, the nerves repair themselves after the chemo is done. But not for everybody, and the nerve regeneration can take a year or more. We know from the pathology after my surgery that this chemo cocktail has been very effective for me, but it's anybody's guess which of the drugs is the winner or if it's the combination. So do you discontinue the potential miracle drug so that you can text better on your Blackberry or do you keep at it because you can't do much text messaging from the grave and maybe the nasty drug is saving your life? It isn't that simple obviously, but I'm going to keep after it a little longer at least. But if anybody wants to volunteer to be my personal valet and button my clothes, I'm accepting applications.

I'm not seeking advice on this whole thing, just pondering aloud. Oh well, you're reading this so you must want to know the details, right?

So happy Fall. How do I know it's Fall? Because I had this conversation with Hayden today:

Hayden: "Mom, what time is it?"
Me: "4:27 PM"
Hayden: "OK, it's Fall. Fall started at 4:18"

Of course I had to look this up on Wikipedia to verify, but Fall did indeed begin at 4:18 PM Central time today.

Here's a little one from Sean last night. He was sitting with Hayden at the table looking at the Astros 2009 schedule and out of nowhere comes:

Hayden: "Hey, remember on June 28th when they were playing the Detroit Tigers? I thought they were gonna win that game. But then Detroit got that 2-run homerun in the 9th. It was off Valverde...or was it LaTroy Hawkins?...No, Valverde, yeah Valverde...and they lost 4 to 3. I thought they were gonna win that game."
Sean: Laughing out loud
Hayden: "Why are you laughing?"
Sean: "No reason"

We're really going to work on how we can harness the power of his brain. Y'know, for something other than hospital phone numbers, solstice times, and stats from 3-month old baseball games.

10 comments:

Anonymous said...

God bless him. Give that Hayden a hug from his old preschool teacher.
Love, LInda

Anonymous said...

thank you for just sharing your thoughts and pondering. Please know you al continue to be in our prayers and thoughts.

As to Hayden, I am so amazed. I remember when he told me our Giants' Barry Bonds was not doing too well with the whole steroids issue. Of course, I also remember when his dad was living with us right after graduating from UT. We were playing Trival Pursuit one night, and the game ended in 18 minutes. Sean knew answers to the whole gamut of questions -- Love, Kim

Sullavinos said...

We love reading your posts. Keep sharing and we'll keep cheering you on. Those BlackBerries are overrated too. We all should be outside enjoying the grass in our bare feet (no heels!) and to hell with the too-tiny technology. :)

Stacey & Eric

Sara said...

Glad to hear that the treatments are still going "well", aside from the numbness and all.

I have a feeling you're going to be hard-pressed to pull anything over on Hayden like my dad did with us all the time. He would make things up, look in the Encyclopedia to "verify" his story, and when it didn't match, he'd close the book without letting us look at it.

Your walking Encyclopedia might make it more difficult to do such things. :)

a Me Amy aim eeeeeeee said...

http://www.responsegenetics.com/responsedx/index.php?q=responsedx-colon

This was a test we requested and my insurance paid for. I think it is not yet standard. It includes kras, I am sure you know about, but it also tests to see whether oxalyplatin will make the 5FU more effective on your particular tumor. Maybe it would help you and your doctor figure out which drug is doing the trick?

Stephanie said...

Those Hayden stories are priceless! Sorry to hear that you're back to the chemo routine. We're thinking about you and sending lots of love your way. I hope the nerve issues aren't too bad. I've personally thought for a long time that snaps and buttons on pants are overrated -- everyone would be more comfortable if we just had elastic waists...

Stephanie said...

Those Hayden stories are priceless! Sorry to hear that you're back to the chemo routine. We're thinking about you and sending lots of love your way. I hope the nerve issues aren't too bad. I've personally thought for a long time that snaps and buttons on pants are overrated -- everyone would be more comfortable if we just had elastic waists...

Art Usher said...

Buttons shmuttons. You need to move your wardrobe to velcro clasps!

Anonymous said...

Hayden is a very old soul, isn't he? The stories about all of your children are treasures. So happy to hear the heels are out ... I'm sure they were initially designed by a sadist and worn by a small group of masochists until they caught on in the fashion world. I'm with Stephanie on the elastic waist idea and, as a genius brother once said, "buttons schmuttons"! I hold you in my thoughts through these next rounds of chemo. Love, Auntie Suzy

Anonymous said...

I wanted you to know that I have been following and praying for the best. You are an inspiration. I do enjoy the gems from your children.

Gary Renola