Thursday, January 19, 2012

Strength in Numbers

Today was a good long day.  Bittersweet and draining in a lot of ways but good. 

When Owen and I arrived this morning we found that David had regained a slight amount of movement in each arm.  Not back to normal by any means but a slight improvement, probably from the steroids. He also got a really good night sleep.  I take full credit for that because I brought him his memory foam pillow to help support his aching neck.  (I'm incredibly modest... hehe)  The oncologist came in this morning to follow up with us and gave us much the same talk that the neurologist gave us the night before.  He even called a friend of mine who is a neuro-oncologist to consult which helped ease my mind a bit just because someone I am familiar with could give me news in a slightly different way than our doctors have delivered it.

What it boils down to is that they started a 2nd type of chemo today, Avastin (yarr! That's very piratey) It's an IV chemo that they can give once every 2 weeks.  As I understand it it stops capillary growth thus ending/slowing the blood supply to the tumor.  It was a concern that he has a biopsy wound from Jan 4th and they normally wait 28 days after surgery because it stops the wound from healing but the wound has mostly healed and they felt that this is a last ditch kind of effort with meds and it's worth the risk to potentially prolong his life.

That's hard to say and hard to think, but this is our reality right now.  It's scary and unknown and we're acutely aware of the impact this is having on others as well as what it's putting us through. There is a slight possibility that the tumor could shrink a little but we have been told numerous times to remember this isn't curable and this is a temporary fix.  We will take every extra second with him we can get as long as it's reasonable and he's comfortable.  The last thing we want is to make him suffer unnecessarily.

Today Dr Hauck, our neuro, spoke about some options.  Depending on how treatment goes (no time frame mentioned on the wait and see) he says we can make plans for every option. One end of the spectrum being rehab again to get what's left of his coordination trained so he can come home and the other end being hospice care at home.  Either way the goal is to be home in as safe a way as possible.  We have to see how those options pan out.  As nice as this hospital is and as amazing as this staff has been we're pretty much over it.

Today we had a steady flow of visitors.  Parents, siblings, cousins, aunts, uncles, nieces, friends, coworkers both past and current.  It really is overwhelming when the impact you've had on other people is paraded right there in front of you. Most people don't get to see that.  I'm a firm believer that you get what you give. This experience has proven that to me in more ways than I can count.  

I feel a little bad when people who have just found out come in the room and we're kind of joking around and being very matter of fact about things that are hard to hear.  We try to keep in mind that before I post or before we have visitors we've had a little time to process this stuff.  Please don't feel bad for being emotional, we have our moments too.  Plenty of them.  We joke because it's a coping mechanism and laughing feels good.  Don't be afraid to laugh with us.

My mom and grandma (hereto known as "the nanas")  took down our christmas lights today.  I scolded them not to get on the roof as I'm sure our homeowners insurance has a "no nanas on the roof" clause.  They managed to take them down using a pole and averting danger!  Thank you for taking that load off our minds.

Tonight I'm staying at the hospital and Owen is staying with his Wolfe family. *snicker* (my son is being raised by wolfes!).  I hate to be away from him but I want to give him his space, and there are times when I feel the need to not leave Dave's side.  Dave says he is comforted when I'm here but he may not be so happy about that in the morning when he realizes i didn't bring a change of clothes.  HA! So um...sorry to everyone who visits on friday. ;)

I've been reading all the well wishes I've gotten on facebook/emails/text/calls to Dave.  We're grateful beyond words.

No comments:

Post a Comment