Monday, January 31, 2011


When insurance declined temozolomide (aka temodor), Dr. Gouw showed them by replacing it with decarbazine, which is similar. So, yay, another new chemo Nick hasn't had yet. Good news is that it can be given via iv through outpatient, vs. temodor via iv through inpatient (only way insurance would approve it). Nick will be on the new stuff for five days this week, along with irinotecan for five days this week and five days next week.

Poor Dr. Gouw broke his ankle last week, so he is now zipping around the hospital on a scooter. He has also been busy learning about other phase 1 trials; one at Sloan Kettering and another locally. Interesting stuff. I'm very glad he is investigating everything; there is so much up and coming in new treatment. Next set of scans are February 22nd with round #27 starting on the 23rd.

One interesting observation: there was a patient sitting next to Nick - a man in his early 30's, waiting to get a bag of platelets. The nurse was trying (and succeeding)to be compassionate, listening to his problems - and there were a lot - mentally, physically, financially. Yes, he has troubles of biblical proportion, but he also has a negative attitude to match. Finally, he just shut down and quit talking. His energy was palpable and we were all silently glad he didn't have anything more to say. Yet, three chairs down on the other side was one of our favorite patients - all of us love this guy! Same age as the first man, same insurmountable obstacle with the monster of cancer, but he can get the entire medical staff roaring with laughter regaling his tales of naughty behaviour in the xray room, or handing out candy and visiting one-on-one with EACH patient in the waiting room - actually making eye contact and sincerely interested in everyone he talks to, while waiting for his next appointment. He was there today visiting someone else getting treatment, while he dragged his iv pole along behind him with his own chemo bags hanging. Everyone on the entire floor knows his name; everyone asks about him; everyone prays for him.

I once had a friend who posed a question to her pastor about God's mercy and his reply was, "Mercy is for those who need it, not always for those we feel deserve it." I thought of this quote as I realized the first man sitting next to Nick really needed our mercy to help his troubled soul, while the second man, although his own mortality is questionable too, has a very strong and blessed soul. For me, it isn't always easy to pray for someone with impactful, negative energy, but perhaps it is the most important prayer to offer. I also think the second man's outpouring towards others is what made a difference in his attitude and strength. So, I have two special prayers to say tonight.

Hmm, must be in a philosophical mood today. Nick is doing quite well, by the way - gained 3 lbs since last round.

That's it for now... we're looking forward to the Super Bowl game - go Packers!
Thanks to all for the prayers, it makes such a difference!

Love Lori


Jay Paterson said...

3 Pounds!!
You Porker.

Next thing you know you'll be featured on the new show, "HEAVY"

Go Pack

Anonymous said...

There is nothing "easy" about fighting cancer and all the other problems that go along with it. Its a very difficult road to travel for the most positive of people. I can't imagine going through this with negative energy.
Nick & all - thank goodness you are positive. I'm sure there are times when the negative creeps in but you don't allow it to envelop you for too long and your strength shines through. You also pass on your good energy to those that love and support you and for that I say thank you :) Looking forward to seeing you on "HEAVY"!!! No Lori, not you - NICK!!!! GM Jennie

sdigerolamo said...

I hope Nick does well with this new chemo and that it is similar to Temodar. Please let me know how it is!
I loved your story about the differences between the negative man and the postive man... I have dealt with both types of friends on the ward, and it makes our day so much brighter when we see the positive one!

Yea for the packers. :) Hope Nick continues to feel good!
Sarah (Vinny's Mom)

Chris Ulvin said...

Hello Lori,
I always appreciate your postings. Your outpatient experience reinforced my daily devotional which focused on Galathians 6:7 "People harvest only what they plant".
Max Lucado asks why some people have the Teflon capacity to resist negativism and remain patient, optimistic, and forgiving? Could it be that they have diligently sown seeds of goodness and are enjoying the harvest?
Nick, family and friends - all of you do acts of kindness, give gracious gifts, and love. May your harvest be miracle blessings from our awesome God.
Love, aunt Chris