Monday, January 21, 2013

Interferon and Avastin-and my Resolution.

Interferon and Avastin.
WARNING:
This post is long,
not well thought out.
And a jumbled mess.
Deal with it.

In my last post I wrote about our hesitation
about our new drug.
I've read about the side effects,
and went in with a lot of questions for the Dr.
Sometimes I must look like such a bossy wife when we
meet with the Dr. and nurses.
Seriously, Trav is so laid back and mellow,
and then I come in all high strung and worried,
and full of questions...because "I read this...and I read that..."
They really must be thinking these two things.

1-How did these 2 end up together.
and
2-We are the medical professionals.
Stop reading so much.

To answer these questions I would say this.

1-We balance each other out nicely.
Usually.
and 
2-I'm trying to stop reading so much.
Sort of.
(And in my defense the people who write the stuff I'm reading
know a whole lot about RCC.  Sometimes... (most of the time),
it all goes right over my head.

They make me wonder if we should be seeing a RCC expert.
But then I'm reminded of how much we dislike our RCC expert,
and how little he listened to us.
And how much we really love our general ONC.
Who still calls T "professor".
And who called me "Marianne" the other day.
 
I feel so much that he is fully invested in us,
while our specialist makes us feel like a number.
 So we are trusting our lovely Dr. and remembering
that our specialist and him do confer.

And this post is not going at all where I intended it too..
So I'll now stop rambling about the Dr.'s and all of my hesitations
and I'll start rambling about our past week.

Monday Trav got his first injection at about 4:30 at the Dr.'s office.
And around 7:00 that night after we'd eaten dinner, I was cleaning up and I 
heard Sienna say "Dad, you are really shivering!"

Sure enough,
Trav was on the couch,
and was rigoring.
And I knew we were in for a treat.
We got out an electric blanket,
and 6! huge blankets and bundled him up,
and about an hour and a half later,
he finally started settling down.
And had a pretty restless night of sleep.
 And quite honestly,
I just sat there and cried.
 
This was not something I wanted my poor kids
to see, and not something I wanted to experience again, 
(IL-2 was enough!),
and more importantly,
not something I wanted Trav to have to deal with.
 
Wednesday he went into get his first Avastin infusion.
And they gave him another shot about the same time.
 
He didn't rigor Wednesday,
but got VERY fevered,
and honestly was really out of it for a few hours.
 And after he finally dozed,
and woke to a bucket of sweat,
and then dozed a little more,
I cried again.
 
You'd think I was the one having all this crap put in me!
 
By Friday,
I was feeling ready to throw in the towel.
I was miserable.
Trav hadn't had a good night sleep in a solid 3 weeks.
(Really, he has been missing his sleep!)
 He gave himself the shot around 8,
(After a little pep talk from Trav, to Trav)
And we watched the clock wondering when the fun would begin.

I was expecting the worst,
and we sat around waiting.
And T watched TV while I watched T.
And then we both fell asleep,
and stayed asleep for most of the night.
 
FINALLY Trav got a decent night of sleep.
Was it wonderful?
No.
But there weren't rigors, 
and he was able to sleep through the fevers and aches and chills.
And I didn't cry.
 A miracle itself this week.
This was the first night Trav hasn't woke up probably 15 times.
Only a few.
 
Now I don't want to belittle his meds 
and make it sound easy,
because his body is constantly aching
and he still has so much fatigue.
He's constantly exhausted.
He sits on the couch to watch TV,
and within seconds he is asleep.
But we are both hoping that he will be able
to start sleeping good all night, every night,
and will be able to gain some strength again.
We are hopeful that the side effects will be manageable
and he will be able to sleep through the toughest of it all.
We are hopeful that his stomach will be able to get back to normal.
And obviously,
we are hopeful that it will work!
We want a semi normal life back!
 
Since my last post,
I have spoken to a few people who this drug has done wonders for.
Their dosing is different,
one of them only has interferon once a week, 
rather then 3 times a week...
And we are definitely going to remember 
this if 3x is too much to handle.

But we will just go with the flow for now.
Trav just gave himself a shot,
the kids are in bed,
and we are waiting for it all to kick in.
And praying it is a sleep filled night and things go ok!
 
Frankly,
things have been beyond hard the past few weeks.
Really, the past year,
but the past few weeks have put a strain on us.
We had no idea how blessed and lucky we were 
when he was just getting weekly infusions,
with very minimal side effects.
 
2012 was just plain HARD.
We've spent weeks in the hospital,
and Trav's body has been through so much.
He's lost weight...(I've gained it!),
and it's been a test to our entire family.
 We've had to answer some tough questions from our sweet 
little ladies,
and have had to rely on each other an awful lot.
 
We've missed 2011.
 
That being said,
we've also learned a lot about how amazing our friends and families are this past year.
They are giving, thoughtful,
relentlessly caring people.
They pretend to not notice that I have bags under my eyes and say
"you look fabulous!" so excitedly that I almost believe them.
They let me cry if I need to,
but almost always ask if they can hug me..
just in case I'm not in a crying mood.
I mentioned once that Trav's new craving was caramel apples,
and the next day we have 10.
Really, people just kept bringing them.
(Next time I'm gonna say he really wants me to have new shoes...
and we will see what happens?)
(Kidding.)
And we still think about the fundraiser held for our family daily.
And we are in awe of that night and how loved we still feel from it.
And just now, as I was writing this post, 
someone rang the doorbell and ran,
and left us all our favorite drinks and a beautiful card giving us encouragement.
The little ladies friends' parents have been so nice to understand
when we send the kids to their house,
and when people stop by and Trav isn't feeling up to snuff,
they understand when I plainly say,
"You can't come in right now."
They just smile and understand.
And I appreciate that!
We are surrounded by goodness.
And truthfully,
we've needed it, and are beyond grateful for it.
 And we both wish we could stop being on the receiving end,
and start being more giving.
But I guess this is where we are in our season of life...
and we hope you all know that we couldn't get through without you.

 
I've made it a goal to find a way for Trav to get back
some of the oomph he's lost this last year.
That's my resolution!
Join me?
You don't need to lose those pesky lbs anyways....
 
Gold star to anyone who made it to the end of this post.
For real.
 
 

10 comments:

Eileen said...

Of course I made it to the end! Remember. I'm President of your Fan Club. I wish I had something profound to say, other than I love you. I love you! And I hope that's sufficient.

PS Your strength and courage [both of you] astounds me! You guys should win any and every award ever invented.

Nicholas said...

Hang in there you guys. Here's to a comfortable nights rest!

Jenny said...

Hugs!!!!!

Jason and Niki said...

Love you all!

kEnZiE b said...

You are such a beautiful person, inside and out!! I think of you guys often and you're always in my prayers!

Kelly said...

Love you! So happy there are a few little ups amidst so many hard times. You are such an example to me. :)

Brittney said...

YES! I got a gold star! Thanks Hay, I needed that.

Anonymous said...

I'm STILL being carried by the love and support of our family and friends while Tom was sick. Your reservoir is being filled for sure! I can relate to so much of what you are experiencing...much love from me to you.

Debbie Goodwin

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