Thursday, August 30, 2012

End of August

Here we are....at the end of August.  Before I forget....Happy Birthday to my sister Marion!

We all had a terrific time last week at Misquamicut and we thank my mother for allowing us to stay with her.  Beautiful weather (it rained only one day) and lots of fun and relaxing time spent with family and friends.   Ed and Dan went deep sea fishing one day.  And the rest of the time was hanging out at the beach, playing cards, or just hangng out.  I'll post pictures later.

Right now I know some of you are wondering how Ed's CT scan went on Monday.  We met with Dr. Bowers this morning and Ed was scheduled for treatment afterwards.

First the CT results...
  • New spots in the lungs (5 mm).
  • Spots showing growth 1-2 mm
  • Center of chest unchanged
  • Lymph nodes upper left: 1-1.5 mm growth
  • Liver: no change
  • Lymph nodes in abdomen: little growth
  • Summary:  a little growth; not a lot
  • Dr. B: "don't like it"
Time for a new plan of attack!  We discussed various treatment options including some new drugs, experimental drugs, Mass General clinical trials, etc.  Dr. B. wants to discontinue the Oxyplaten since the cold sensitivity is lasting longer than it should.

So we decided on the following:
  • Xeloda:  every day/2x a day (Ed has been taking this 7 days on/7 days off); on this schedule he can stay with the pill form otherwise it would be administering this via a 46 hr pump
  • Irinotecan:  this was one of the original drugs Ed was on; this is the drug last fall that caused Ed to lose his hair
  • Avastin:  this was also one of the original drugs Ed was on but caused protein in his urine so he had to be pulled off it before it caused kidney failure.  Dr. B. will need to continue to monitor this closely.  If protein in the urine becomes a problem, we'll have to look at Erbitux again.
Yes, this is the combination Ed started with.  We hope it will be effective with no serious side effects.  And since we need to get pre-approval from the insurance company, Ed did not receive a treatment today and is now scheduled for next Thursday.  The good news is that this means he won't feel (more) tired/sick over the labor day weekend.  And since Ed has been tired and achy pretty much every day, we're hoping the changed treatment plan will help him feel better overall.

Time will tell and I'll keep you posted.  For now, though, just one day at a time.

Sunday, August 12, 2012

Learning to Plan Accordingly

Ed had a treatment this past Thursday (8/9) and based on his reaction from the last one, we are learning to plan accordingly.  We anticipated that he would be tired and achy and his stomach being queasy for a couple days and that is what is happening.  He went into work on Friday and was thinking he'd work all day...I nagged him into not doing that since it takes too much out of him.  Thankfully he listened to me.

Yesterday morning (Saturday) he wanted to run some errands with me even though I told him it wasn't necessary.  Well an hour into the errands he was beat.  So we came home and he spent most of the rest of the day in bed.  Which I'm fine with--he needs to listen to his body.  But he hates it!  He can't stand that he's not productive and can't do anything.  But hopefully if he takes these few days to enable his body to recover, he'll then be fine.

So after his last treatment in late July we made the decision NOT to go to the beach this weekend with my Mother.  It is tradition that we go down with her and get unpacked and then spend a couple days together.  But in light of how we anticipated Ed feeling, we bowed out this year.  Clearly it was the right decision.

As they say, it's all about learning to manage the side effects and since Ed really didn't have any for 2 years, he's just learning how to do this.

In other news...  Dan's car is undriveable.  Well, he was driving it when Ed noticed a problem with the rear axle.  Something is rusted (you would have to ask Ed for the details) and could break at any moment.  So it was either try to find parts and repair it or find a new car.  It's a 96 so finding parts isn't easy or cheap.  This has been a good car...we got it in 2004 so Dan has gotten almost 8 years out of it.

God provided though.  Ed talked to Marvin who gave him a lead on a car where they had just bought a "For Sale" sign.  And now they don't even need to use it.  Ed and Dan checked it out--perfect!  2005 Ford Taurus with only something like 48K miles.  In excellent shape.  Just need to deal with registration, plates, etc., this week and then that will be done.  Woo Hoo!

Other excitement...last Sunday I went to a baby shower for my niece Missy who is expecting a baby boy in October!  The shower was a lot of fun and she got some great stuff--stuff she definitely needs!  This is a miracle baby (she had been told she couldn't get pregnant) and we're all excited for her and her husband Dennis.  Can't wait for Bryce Harper to arrive!  (And Dan is excited about this name since it was one he suggested!)

Enjoy the rest of August and summer!  For the first time in 20-something years, no "back to school" for us!!

My Story

Lately I find myself moving through the days, being with others, laughing, and living life. Days pass quickly and grief, sadness, and feelin...