Saturday, August 22, 2009


posted by Mary Lello, Monday, August 24, 2009, 8:51 PM

Yes, I sing to Jim a lot. In fact, for those of you who don't know me real well, I have a tendency to burst into song a lot. LIke some Roger and Hammerstein musical minus the dance routine. It's probably annoying to many of my friends, though they've never said this. Certainly it can be astounding to the not-so-close friends to have me launch into a song when they've said a simple sentence like ... "do what you want to do" .. and I hear the Mama and the Papa's singing "Go where you wanna go. Do what you wanna, wanna do ...."

And thus, my karaoke blog. Friends have told me "Just do it Mary!' Do a Karaoke blog!! This phrase does NOT evoke a song from me, but if it does for you please feel free to post it. In fact, post any song that comes to you from this blog. It might be fun!

SO, here are the songs I sing pretty regularly to Jim, or to myself and get myself crying. Such a pathetic and dramatic being that I am! :

At MRI time I've already shared what I sing with the song:

"where do you go my lovely, when you're alone in your bed?Tell me thoughts that surround you. I want to look inside your head, yes I do ... "

Or, for no reason at all but how I'm feeling:

"Hey [boy] I'd be in trouble in if you left me now cuz I don't know where to look for love, I just don't know how.. Hey [boy], I'd be in trouble if you left me now .....

(nope, don't know who sung it. I want to say Marvin Gay as it seems like a Motown kind of song, but I don't think so).


Dionne Warwick singing Burt Bacharach;

"I know I'll never love this way again. I know I'll never love this way again so I keep holding on, before the thrill is gone. I KNOW I'll never love this way again, hold on ... hold on ... hold on" ....

These last 2 totally get me crying as they speak volumes about how I'm feeling lately.

Then there is another Dionne Warwick:

"the moment I wake up, before I put on my make-up. I say a little prayer for you. I'm combing my hair now, deciding on what to wear now. I say a little prayer for you .."

There are more but they evade me tonight.

C'mon. Share YOUR songs with me. I'd love it One friend sent me her song for me which was all the words to "Lean On Me" ... yup, tearful, joyous feelings that she should share THAT song with me/for me. Such loving support in that song!

So go ahead. Share the song in your head! Post it or send it to me in an email. Guarantee you'll have me singing it for at least a day!

"So long, far well.... Good night, good night, good NIIIIIGGGHT"

(from the Sound of Music)

Love ("what the world needs now")


My best friend

posted by Mary Lello, Saturday, August 22, 2009, 5:30 AM

The day after Jim's Avastin infusion is always a little harder. It's not like getting chemo or radiation but it is a big hit of powerful medicine and Jim always takes an energetic dive.

Every morning when I hear Jim stirring I will run upstairs to just monitor his barefooted, jerky little shuffle to the bathroom. I always ask him "how are you feeling this morning?" and most mornings he will respond "pretty good" and smile at me. But this morning he was sitting on the edge of the bed and his response was "I'm tired Mary. When am I going to get better?". How to respond to this except to remind him it is the morning after Avastin and he's feeling that dip, that he will only feel better and stronger again from this medicine, it's keeping him alive and helping us to take one step at a time up this incredibly steep mountain side.

Empty words sometimes when all you feel is like shit and depressed. It took him twice as long to dress today and he needed a wee bit more help from me then what is normal for him now. I pointed at a picture on his dresser of the 2 of us in an embrace. I believe our friend, Mick Cochran, took this picture on Popham Beach back in the early '90's. I told Jim to just look at that man - a big smiling, deeply dippled Jim Daniels - and before I could finish what I meant to say Jim said "where he is? Where is that man?" Oh boy, that did it. We put our heads together and just cried.

Brain cancer is unlike other cancers as it takes away some of who you were. Messing with the brain is a whole different ball game. As I have said before, I DO see more of JIm these days but I haven't seen that big smile in a long time. I haven't heard his super quick wit and one liners in a long time. I miss that laughing Jim. And although I believe he's still here he's not ready to surface yet.

On a happier note, Dr. Weisburg is very pleased with Jim's progress. She reminded Jim that back in April (4 months ago!) most of the people in her office believed that Jim might not make it, that he would be "underground". So everyone, including herself, is delighted to see him every 2 weeks and to see how he is progressing by talking better, walking better and looking better. This brightened his spirits and has been a good reminder to us.

Tomorrow, perhaps, will be a better day. We are going to David and Betsy Puelle's camp on a lake. Jim loves hanging with David and I love seeing Jim in the water bouncing around with his life vest on so I'm sure a better day is coming.

I shall keep you posted.

Loving you all back,


Friday, August 14, 2009

Shorter days

posted by Mary Lello, Friday, August 14, 2009, 4:36 AM

I'm noticing how the days are getting shorter. It's dark at 8:00 now and the sun hasn't quite made it's arrival at 5:00 a.m. September is just around the corner and as much as I love this month it does mark the end of summer and the transitioning into Fall.

Marking time. 9 months. The gestation period for our species. 9 months come September is the amount of time Jim and I have been living with a cancerous brain tumor. 9 months. Sounds like such a long time. Feels like an eternity.

Jim gets frustrated and depressed easily these days. He's tired. We both are. This tumor messes with his time clock and he may talk about being able to do something next week - which is not an appropriate time frame. So recently we've started a new conversation about "expectations". Jim told me he thinks he puts too many expectations on himself and then gets depressed when they aren't realized. Yup. I realize that I live more in the present now then I ever have before. It's an easy thing to say "being in the moment" but I never actually lived like that, only talked about it. I'm realizing that I DO live this catch phrase now. I DO take each day as it's offered and don't look to tomorrow. What Jim can do today might be slightly better then yesterday, or he might be slightly worse, today is just whatever it is with Jim.

To us this daily pace is a snails pace. To those who haven't seen him in awhile it's leaps and bounds. As long as we keep moving forward we both can continue to do this. Then again, what choice do we have?

We have one real future goal right now. September 26 there is a local bike ride put on by 2 guys who are cancer survivors and raise money for the Cancer Community Center in Portland. These guys call their ride the "Not Dead Yet" ride. I love it. Jim has been on his bike with a wind trainer at PT so I asked David Reese, the PT guy, if he thought Jim might be able to ride a tandem bike with our friend Matthew come Sept.26? With reservations David said "OK, it's a good goal" but there are a few things that need to be worked on. That right hand won't stay on the handle bars and the right leg creates a very jerky cadence. But we have a month and we'll try to get Matthew over there with his tandem to see how Jim does on it in the next couple weeks. It would be a real hoot to ride, even 10 miles, with Jim! And a big lobster bake to follow.

We also get another MRI the end of August. Dr. Weisburg has said she wants to do an MRI every 2 months now. This feels good. It's always good to know what's going on in that head of his. Sometimes I sing that old song to Jim "where do you go my lovely, when you're alone in your bed? Tell me the thoughts that surround you. I want to look inside your head..." (anyone remember who sang this? I don't)

If you don't have to return to school then September is THE best summer month of them all! The days may be getter shorter but summer fun is not dead yet!

Stay with us in this, we love you all,


Saturday, August 8, 2009

August 4th

posted by Mary Lello, Tuesday, August 4, 2009, 7:08 PM

Today is my 53rd birthday. When I was young and tried to imagine where I would be and what I would be doing when I was, oh, 53, THIS was never even a speck on my radar. But here we are.

I woke this morning and didn't even remember it was my birthday until my friend, Chess, showed up with cut flowers from her garden for me. Another Leo lioness, we don't forget each others birthdays. I remembered hers but forgot mine.

Jim use to wake on past Aug 4 mornings and the first thing he would say to me would be "Happy Birthday to you!". This year there are other things on our minds, other things far more important, other milestones to celebrate.

I went to work today and wrote 8/4/56 ... oops 8/4/09 .... on all my intake notes today. August fourth .... oh, right.

Usually Jim and I would go out for a really nice dinner somewhere on my birthday. Jim has always been amazing at finding me presents too. He taught me how to clothes shop for myself helping me learn what looks good versus dumpy on me. He's ALWAYS found the best little something for a present and always with a lot of thought put into it. Knowing me as well as he does he was able to find me perfect gifts - they didn't have to be big, nor are we talking expensive, but just ... me. Just... perfect.

Tonight I came home from work and Jim was at meditation. Tonight I realized that my 53rd year would be celebrated with a manhattan and an hour by myself - which is a cherished thing these days. Jim got home around 7:30 and Jane was carrying a small, festive looking bag. ????? When she left Jim presented me with this bag. Inside was ... pure magic. Pure tears. Pure love. How to explain the immense emotions I feel for this man - as compromised as he is right now - remembering to do this ... for me. I still can't stop crying. I've been around my sister the play write, Karmo, too much as I think that THIS would be the scene where the theater would not have a dry eye in it.

But honest to God, HOW did he pull this off? He went shopping today with our friend/caretaker, Kristine. And, I believe JIm picked these items out for me. God, to be a fly on that wall in order to watch him do all this. It's just a wee bit overwhelming for me. I'm slightly astounded at how he pulled this all off, how he honored me more then he can ever imagine, how he remembered this, when I had forgotten!

And tonight there is an orange full moon rising. August 4th. It's been the most amazing, joyful, tearful birthday I've ever had. THIS may be the birthday I never forget for the rest of my life!

Full moon, full love tonight,