Karaoke

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).

And:

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")

Mary

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,

Mary

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,

Mary

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,

Mary

Blue Hill, Blue Skies

posted by Mary Lello, Friday, July 24, 2009, 5:40 AM

We took Donna and Mark to the airport yesterday after 9 glorious days playing with them. Seems they took the sunshine with them, it's pouring here this morning. But our time in Blue Hill was absolutely, picture perfect Maine summer weather. Clear, blue and just warm enough without being sticky. We saw a lot of all the Jaffray's (they are family, just not by blood) who gave us the fabulous place we stayed in. Every evening we would all gather in the kitchen and watch the grand kids run and giggle all around us.

I got a bike ride in while up there. It has to be one of THE most gorgeous places to ride. Between the coves, views of the mountains on Mt. Desert across Blue Hill Bay and riding through the blueberry barrens it can be just breath taking .... well, the hills around there do that to me too!

We took the Gray's to Acadia and drove the Loop Rd. and then drove up Cadillac Mt. For those of you who saw the picture and thought we had climbed that mountain - we didn't. Jim and I rode our bikes up that auto road last Fall with some friends. He and I decided we would do that ride again .... and we really plan to! .... in the future.

Back in Portland we took a lobster cruise aboard the Lucky Catch. Our good friend, Tom, is a lobster man and started this business a few years ago to supplement the lobstering. It's so much fun and Tom is truly great at showing tourists what lobstering is all about. Donna was in her element on this trip. I think Tom must have the cleanest, least smelly lobster bait of any fisherman on the Eastern seaboard!

Mark took some great pictures of Jim while on this cruise. Jim agreed that he 'looks like himself' in these pictures. Might be the angle coming from the left side of Jim's face but still - he LOOKS like Jim again. And since I've always liked the way this man looks it a pleasure to see that face again.

So a good time had by all. Jim is doing really well these days but seems to actually be more depressed and frustrated. We watched a movie yesterday about a man who had a massive brain hemorrhage and the road back to recovery from this. The doctors in this film said that as "Jason" healed he might become depressed and this is a good sign of healing since he now has an understanding of just how limited he is. POW!!! This was exactly what I have been telling Jim so it was nice to hear that validated.

I get depressed too, though I'm not sure this is a sign of my healing. Vacations for me right now means I don't go into the office - but I can not take a vacation from my life. But I truly believe, in my very bones and being, that Jim is going to continue to improve and that our lives will continue to be filled with wonderful people, experiences, adventures and the love that we share with each other .... and all of you.

We are not out of the woods yet but we seem to have found some clearings. We so appreciate all your support and prayers.

Loving you all back,

Mary

Snow Island

posted by Mary Lello, Wednesday, July 15, 2009, 5:36 AM

The new pictures posted are from our weekend on Snow Island, a privately owned island off Harpswell where the Lello clam gathers annually for play time (just realized my typo of clam vs. clan ... but I Iike it!). I have a BIG family - this year we were 20+ strong - it's always so wonderful that the owner/friend of this island, Dodge, opens his small piece of paradise for all of us to gather and basically take over his place! Usually we go there over Labor Day but this year my niece, Hanna, may be in actual labor with her 2nd child on that date so we went earlier.

Miracles of miracles the weather cleared out and we had 3 gorgeous days of sunshine. Except for sleeping the entire time on this island is spent outside eating, drinking, swimming, kayaking, visiting and this year dancing. Yes, that is Jim dancing with me in the photo to an impromptu band with guitar, banjo, fiddle, spoons and even bottles. You just couldn't keep your feet from tapping and Jim was up for a dance! I thought we might just stand there and swing our hips a little bit but Jim took my hand and started to swing me out and twirl me around! OK, we're really dancing here!!

On Sunday the wind died down and it was good kayaking weather so I mentioned it was too bad there wasn't a double kayak so I could take jim out. "There IS a double Mary, it's new!" says my sistah. Well whoohoo! So with all hands on deck to get Jim into the kayak we set off with my niece, Jennywren, and nephew, Will, in single boats to kayak around the island. This is such a beautiful area with Ospreys overhead, an occasional Eagle sighting and very peaceful inlets. Jim looked over his shoulder several times and just said "this is so great Mary".

And it was, really great!

In the evening we all head up to the "barn" where there's a pool table. I have some real pool sharks in my family but I am not one of them nor are my other 2 sisters Jayne and Sara (Karmo is however!). But somehow the 4 Blah Blah sisters got roped into playing a game. I was pretty sure this game could take all night since Jayne, Sara and I can't seem to knock any of those stupid balls into any of those pockets! At one point Sara was trying to figure out a shot and she turned to Jim, who was sitting behind her and had a view of the line too, and Sara asked him if she took this shot would this ball go into that corner pocket. Jim coached her a little bit and kept saying "yes, it will go into the pocket". Well, sure 'nuff, she took that shot with Jim's blessing and that ball dropped into the corner pocket pretty as could be!

It was wonderful to see Jim smiling so much, to have so many others around to step in to help JIm do whatever. Over the years these island weekends have always been wonderful, but this one felt extra special this year.

Donna and Mark arrived last night and today we will head up to Blue Hill to continue our vacation. Jim continues to get stronger, continues to get frustrated with all he still can't do but even this, I feel, is a sign of his healing.

Loving you all back,

Mary

July - Independence Day

posted by Mary Lello, Saturday, July 4, 2009, 5:22 AM

July is a busy month for us with friends from the left coast visiting and Donna and Mark returning to vacation with us for 10 days. It's a good busy.

Jim continues to make slow progress, but it's progress just the same. PT seems to be helping him get a little stronger and he seems steadier when walking, though that right leg still doesn't want to bend at the knee and lift from the hip flexors in a normal gate. And the right hand doesn't seem to get any information from the brain regarding how to properly function. Many of you have sent me information about how the brain is resilient and has the ability to heal as well as make new connections. This is encouraging because sometimes we get discouraged. I think the hardest thing for JIm - besides not being able to do things for himself, by himself - is not being able to retrieve a word or thought. At times when he knows what the word is he is unable to say it. He just can't form the sounds. Yesterday he told me this really scares him and I reminded him that he will heal, that he is strong and has the ability to make all these new connections again. I've lined up a speech therapist to begin working with us after our vacation.

Me? I hit the wall pretty hard last week. I went for a bike ride and found that I truly had no gas. I've dipped pretty deep into my reserves and there isn't much left. Although that ride was not a hard ride nor very long I came home and felt like I had ridden 100 miles. I couldn't imagine trying to sweep off the deck, which was covered by oak leaves that my wicked retarded squirrels keep dropping as they try to build a nest up there. Nor could I even walk out and feed my crows even though they were talking to me. I was just done. Very difficult place to be when my man needs so much and my life is a wee bit demanding right now. But our dear friends Pete and Nikki arrived from California and stepped right into stride with what needs to be done here ... and so I was allowed to drop the ball just long enough to find my second wind, to recover a little bit of energy and get back into my own stride.

Fourth of July, Independence Day ... and Jim and I both long for a bit of independence in our lives ... we are working towards that even though it seems a long way off right now .... even though we can only trust that it will come again. Today I think we both need to hear encouragement, and so we really appreciate how so many of you send a note telling us that it's possible.

Have a safe and happy 4th everyone.

Love,

Mary

PS - I must add that our friend Art showed up to visit the day I was so empty and couldn't sweep the deck. He grabbed a broom and just started sweeping without any question or my even saying anything that day! Again I'm reminded of the "blessings dropping like blossoms" .... or Oak leaves .... all around us.