Thursday, May 19, 2011

If I Die Young

Nick has a new favorite song - "If I Die Young" by The Band Perry. The lyrics will follow at end of this post.

This past week hasn't been easy, although he has slept through most of it. His eating has not improved, pain in lungs has returned and his fatigue is off the charts. We came in yesterday to meet with the Pain Clinic. Basically, they are setting Nick up on palliative care, getting a baseline on his pain so that should anything change, increasing or changing his pain medication is simplified and expedited. Our appointment was at 1:00 and poor Nick could barely keep his eyes open. During the physical exam, he lifted up his shirt to the doctor could feel his tummy and we all noticed the area near his belly button towards where his prior permanent drain was: it was red again (it had almost disappeared last week). He has only been off his antibiotics since Monday.

After a visit from Katie, Grace & Dr. Gouw, they decided Nick needed to have another paracentisis (his tummy is pretty firm again) and then culture the fluid to see if the infection is back. It took some time, but he was wheeled in around 6:00 p.m. to get his tummy drained. After about an hour, the radiologist came to talk to me. Uh oh, this can't be good. He said there was not any fluid in Nick's abdomen; it was all filled with a gelatin substance and they were only able to withdraw 2 mls. He wasn't sure if it was enough to culture so they may have to draw blood to test for infection; also not sure if there was enough to biopsy as he is suspicious it is all malignant. I was right, this isn't good. They wheeled Nick back into the room with me so I could help him get dressed. Nick asked me, "Did he tell you it was malignant?" I started to cry. He then asked, "Is that a bad thing?" I said, "It sounds like it." and I apologized as I dried my eyes.

His new favorite song played on the radio as we drove to the appointment and I had a tough time keeping my emotions in check then. On our drive home, it played again. As he said, "Aw, I LOVE this song!", I couldn't hold the tears back any longer. He softly said, "We can change the channel..." but I said no, I needed to release some pressure. As soon as that song was over, the next song was, "Calling All Angels" by Train. I smiled as I dried my tears, again, that this was a perfect follow-up song, especially with the lyrics, "You don't give up, I don't give up..."

Once home, we found out that Nick's favorite song was sung by one of the American Idol contestants on the show last night. Seriously? Then Nick asked Kelsey to come and sit by him so he could give her some of his positive energy. So she did. He then asked her to put her arm around him as he did her. So she did. Then told her it was ok if she wanted to swing her leg over the top of his, both if she wanted. So she did. Then took her other hand and held it in his and said, "See, isn't that nice?" Too freakin cute! Lee, Kelsey, Nick and I were all on the one tiny end of our couch.

Today we had to come back to Huntsman (at 7:30 a.m. for crying out loud!) to have labs drawn for the trial. Grace was able to pull Dr. Gouw out of a meeting and we talked about yesterday's problems. He suggested that Nick drop the trial and go back on chemo (probably cycle 3 which is a two week cycle). Before Nick makes that decision, Dr. Gouw wants to have a ct scan done immediately. To expedite everything, he had Nick admitted to the 4th floor as inpatient. We can get the ct scan done today, decide on chemo, monitor his nutritional intake, keep an eye on possible return of staph infection and his pulse, which was at 130 today. And that is where we are right now, room 4625.

I will post more later once we get the results back. We are all a little shaken and very worried. BUT, we are with a floor full of staff that love Nick and will care for him tenderly, as if he were their own son. Love and hope are very much in abundance.

Here are the lyrics to Nick's new favorite song:

THE BAND PERRY LYRICS

"If I Die Young"

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

Uh oh, uh oh

Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors, oh and
Life ain't always what you think it ought to be, no
Ain't even grey, but she buries her baby

The sharp knife of a short life, well
I've had, just enough time

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

The sharp knife of a short life, well
I've had, just enough time

And I'll be wearing white, when I come into your kingdom
I'm as green as the ring on my little, cold finger, I've
Never known the lovin' of a man
But it sure felt nice when he was holding my hand, there's a
Boy here in town who says he'll love me forever,
Who would have thought forever could be severed by
The sharp knife of a short life, well,
I've had, just enough time

So put on your best boys and I'll wear my pearls
What I never did is done

A penny for my thoughts, oh no, I'll sell them for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'

If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

Uh oh (uh, oh)
The ballad of a dove (uh, oh)
Go with peace and love
Gather up your tears, keep 'em in your pocket
Save them for a time when you're really gonna need them, oh

The sharp knife of a short life, well
I've had, just enough time

So put on your best boys and I'll wear my pearls



Love Lori

6 comments:

Anonymous said...

Lori and Nick, I'm so sorry you're having such a tough time. Our prayers are always with you.
This song 'If I Die Young' is a little to popular among our cancer patients. A couple of weeks ago I had to look up how the lyrics were written: http://www.theboot.com/2010/07/16/the-band-perry-if-i-die-young-lyrics/

Amy Goodner (Delaney's Mom)

Beci said...

I am what you could call a lurker...I follow your blog but even as I pray for you all each day, I feel inadequate to comment as I want to come up with something eloquent to say. The words that keep repeating in my head as the tears run down my cheeks are "I'm sorry". I'm so sorry for your pain...I'm so sorry for your suffering. I join in calling all angels to surround and protect you..to take away the suffering & pain and to bring you all comfort and peace.
I love you all...always. Beci

Anonymous said...

Dearest Nick, Lori and all. Definitely calling all angels. I can't imagine what you're experiencing right now. My shoulders have become much broader and my love and devotion to you stronger. Nick, I'm cowboy'ing it up with strength, healing, positiveness and love riding their way to you. See you in a few days. GM Jennie xx

Anonymous said...

Lori,
Thanks for keeping us updated. I don't know if you realize what a profound impact you and Nick have had by sharing your journey with us. I will continue to keep you all in my prayers, and once again ask for a miracle. Meanwhile try to take comfort in the fact that you are loved by so many people.
Lynda

Anonymous said...

Sending you and your loved ones thoughts, prayers and peace.

shanerbaner said...

I have no words but Nick is always on my mind as the rest of family. God Bless and thank you for keeping all his fans updated. Brad & Laurel Wilkinson