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.

MRI on 6/20/09

posted by Mary Lello, Monday, June 22, 2009, 9:00 PM

Good news today! The tumor has shrunk a wee bit, but even a wee bit - and we're talking point-something mm's - can be dramatically different for the brain. It looks very different now too. Dr. Weisburg showed us the images of the MRI taken on April 22 and explained what we were looking at and the tumor had a lot of whiteness around it. She called this calcified - or something like that - though I don't think that's what is was. Maybe I didn't hear her right. But it just looked .... healthy. The MRI from saturday 6/20 showed a tumor definitely a wee bit smaller with no whiteness around it and looking very different. Not sure how to explain it but it was most certainly .... different. Maybe less alive looking?

The hydrocephalus vastly changed from one month ago too. The waters have receded! The tide has gone out! However you want to look at it, this is great! Dr. W. was also very happy that Jim no longer has double vision. She was pretty sure that was going to be a permanent problem due to the swelling from the hydrocephalus damaging the optic nerves. NOPE!

Yes, I'm relieved. We would both like to see his speech begin to improve. Jim is horribly frustrated these days with the inability to make his mouth work and say the thought or word that he's got in his head. He can remember some great swear words when this happens though! I think it's time for speech therapy to help him begin to make new connections and find new tools to use. Jim didn't push for this before and didn't seem to really want it but he's ready now!

He's walking a bit better these days. I think the PT may be helping him get stronger. He still can't bend that leg and I still feel I need to be close by when he's walking to catch him if he starts to fall but this Is slowly improving and, if he seems real steady, I might back off from my hover craft mode.

That's the scoop.

Loving you all back!

Mary

Perspectives

posted by Mary Lello, Saturday, June 20, 2009, 8:27 AM

I was re-reading some of these posts and had a HUGE realization. On 5/3 I was hoping that Jim could go upstairs, I was excited that he was walking by holding onto my shoulders, I was elated that he was saying a few words and able to understand things said to him. That was just over a month ago!?

I've been on an emotional roller coaster lately. When Jim is doing well I'm upbeat and OK. When Jim is struggling for the word or thought he wants to say, struggling to get that right leg to move and not trip him, struggling to get the right hand to do a simple - yet still unattainable - task, then I find myself frustrated, scared, sad and angry. But damn, JUST one month ago Jim was still just getting over hydrocephalus and needing a wheel chair to leave the house. Perspective is everything!

We go get an MRI today. We won't get the results of this until we see Weisburg on Monday and get another Avastin infusion. I am a wee bit anxious about this MRI even though Weisburg offered that she believes we will see that the tumor has shrunk. She rarely offers this kind of foresight so it was encouraging to hear her say this. But I want to SEE this for myself. I want to KNOW that the Avastin is still doing it's job and that the symptoms we still struggle with is indeed healing. And the deep, tumor-level-healing, takes time. We are, after all, just starting this recovery road and it's slow going when you don't walk or talk so well.

So I will let you all know what I know when we know it .... and know that we know what we know and that we don't know what we know yet don't know .... sorry, couldn't resist that Rumsfield kind of speak!

Mary