Wednesday, July 22, 2015

Update

Sometimes you need a glass of rosé.

First of all, I had a WONDERFUL time in New York last week hangin' with family. I ate good food, saw a really great play that one of my nieces wrote and that both of my nieces are in, saw some sights and survived the heat and humidity (UGH! I had forgotten how oppressive humidity can be.) The best part was being with family. So thankful it was possible to go!

While I was in New York, we worked hard to try and figure out a way to reschedule our Dr. Lin appointment because it was accidentally scheduled on the same day as Harv's pain clinic appointment. There was no way he was gonna miss the pain clinic appointment. Thankfully, we were able to work it out so Harv could see Dr. Lin today... Which meant that we got up sorta early (not very, but sorta 'cause I just got back into town) to drive to Seattle... 

Harv had blood work, we saw a nutrition specialist and then we met with Dr. Lin.

Unfortunately, the numbers that are supposed to go down are not down and the numbers that are supposed to go up are not up. His CEA is at about 107 -- up from 70-something from last week. Other numbers are also not cooperating, but I don't actually want to look at the charts when they're ugly so I chose to avert my eyes and just listen. 

Dr. Lin doesn't think the chemo is working 'cause of what the numbers are saying and 'cause Harv isn't feeling better. So, we're going to stop the TAS-102. It seems to be more harmful than helpful.

Our time with the nutritionist helped a lot in trying to find foods that work for the cook and for the eater. I hope we can both put some of her suggestions to work and that it'll start making a difference in how he feels and that he'll start to gain some weight.

Next week we'll go to one of our favorite vacation spots and then when we get back, we'll do a CT scan and some more blood work. Dr. Lin thinks that maybe a combination of some more radiation and a little bit of chemo might be helpful for keeping things at bay.

Truthfully, we are aware that we've tried much of what we can try. Nobody's giving up, but the options are becoming fewer.

The plan now is to continue what we've been doing -- which is to fight the best way we can with what we can...and to squeeze as much good ("good" can mean different things at different times to different people) out of every day as we can... Which, truth be told, should be what we do every day, but you know... 

We are thankful for so much -- family, friends, where we live, good doctors... The list is actually very long...

As always, prayers, good vibes, well-wishes, rain dances, chants, good thoughts are all welcome. 

Much love and many blessings to you all.

P.S. Raney started limping when we got home. Same bad leg... Please, please, please say prayers that it's just a tiny little thing and not another need for a veterinary appointment... Hoping the anti-inflammatories do the trick. Goodness-stinking'-gracious alive!

Thursday, July 16, 2015




We went to Seattle on Tuesday for Harv's check-up and some blood work. We thought we would also be picking up the next round of the oral chemo that he's been taking.

Over the past few months, he's been a good bit more fatigued (sometimes has three or four hour naps in the afternoon) and his appetite hasn't been as good. He's fairly winded when walking up the stairs -- and sometimes just winded from walking at all. He walks pretty slowly.

The nurse practitioner that saw him recommended that he take a steroid and see a physical therapist to help him increase endurance and strength/ muscle tone. All of his blood work didn't come back but his WBC was low and his liver enzymes were up. So, they recommended we hold off a week on the chemo and go back down next Wednesday or Thursday for more blood work and hopefully start the chemo then.

Harv feels pretty good about that 'cause he thinks it'll make him feel better. I was bummed 'cause even though, after 3 1/2 years of treatment and 3 1/2 years of knowing that plans can change, I wanted to continue with the plan. ("Don't mess with my plans!") 

I think it's possible that the steroid has made a difference already... even though he napped for a while yesterday. He took a pretty good walk...and seemed to have a little bit more energy. Hopefully, after a couple more days of the steroid, he'll feel even better.

Today, I'm headed to New York to see my brother and his family and to see my nieces in the play that they'll be performing in at the Edinburg Festival Fringe in August. Emily wrote the play and she and Lisa are both in it... It's very exciting! And, Clif will be there, too. First time I've seen them all since May.

Prayers always appreciated. We love you.

-chc