"Go Ahead and Scream"

posted by Mary Lello, Sunday, February 21, 2010, 4:30 AM

I admit to losing it sometimes. To losing all my patience, my cool, my acceptance. I admit to wanting to scream and throw things ... sometimes at Jim. And I admit to feeling some anger when in the rare moments that I do act less then Saintly towards Jim a friend will look at me with furrowed brow and I want to say "yeah? Well YOU try living this life 24/7, just for a week! I dare you!" ... but of course I don't.

Yesterday was one of those days. There were 2 different directions to go; Jim wanting to attend a Buddhist function and I wanting us to be at a family sheebang. But I knew the importance of the Buddhist gathering for Jim so I launched into trying to make all the different ends tie together and then threw up my hands and realized I just needed to drop the entire ball. And I did. Taking 2 1/2 glorious hours for myself where I reclined on the couch with my book even though the house is trashed, the recycling needed to be taken, and a woodpile sits waiting to be moved into the shed. The house was empty and I just needed to enjoy that.

Sometimes the fatigue takes me headfirst into a brick wall and I need more then 2 hours to regroup. After I picked Jim up at his gathering he said he wanted to go out to Gorham to see all my family who was gathered, and partying, there. So we did. But I was still feeling a bit frazzled so when Jim just stood outside the car staring and saying "hi" rather then moving to the bomb fire I called him "Mr. Slow Molasses!", much to my sisters horror. And when he decided to move inside and kept stopping for no apparent reason to just stand there in the mud I felt my patience drain from me.

So the final straw was around 7:00 p.m. when Jim said he was ready to go home. Great! Me too! And then he asked me "and you?" not just once, but THREE TIMES! I took his shoulders, looked into his eyes and said "YES JIM, I'M READY TO GO! I TOLD YOU THIS!" And my family gave a gasp. All but my mother, she just smiled. OH, and then he had to say good-bye to everyone at least five times making just getting to the door an event similar to the slow release of the disc-thing in the Olympic Curling competition. My mother looked at me and said "go ahead and scream", instead I stomped my feet like a skunk giving it's final warning before releasing it's well-known and dreaded bomb.

My mother understands. More then anyone else, I know she understands. She raised 5 children under the watchful eye of a small town where our father was a God, also known as the pastor of the Congregational Church. The First Lady of the US has nothing on my mothers job during these years to remain calm and serene even when under fire. She gave birth to the last child when she was 40 years old and now faced another 18 years of taking care of one more small being while the other 4 fledged the nest. And then when she was in her fifties my father retired and they moved out from under the intense gaze of that small community and into the house they had built when first married overlooking the open ocean and wide open fields. I believe my mother looked forward to having a few dinners out in the larger town of Portland and maybe even doing some traveling with her husband. But my dad had emphysema and soon after entering retirement my mother was again saddled with caring for someone 24/7 verses being able to take flight and soar free.

When my mother looks at me and says "go ahead and scream" I KNOW she understands exactly how I'm feeling. When she tells me not to worry about feeling sorry for myself or that she knows what it's like to think the world goes on having all kinds of fun without us, I KNOW she gets it!

And today I can feel my patience is back though maybe not my energy. And I can feel my mother's awareness and understanding of what each day asks of me and today this is more then enough.

Loving you all,

Mary

Results

posted by Mary Lello, Friday, February 19, 2010, 1:30 PM

The results are in. And it's not real cut and clear. Dr. Weisburg walked in and asked us very pointedly how we were doing. Good? I said with a question mark. And, I continued, I'm assuming the MRI is fine since we didn't hear anything from you. Well, the tumor is bigger according the radiologist who looked at the scan here in Portland. BUT, Weisburg continued, this makes no sense to her at all and she was very surprised to hear this. She wants to send our MRI down to Dr. Wen and get his professional opinion.

The brain doesn't allow much space for growth. If this tumor has grown even a centimeter (for those out of the metric/scientific loop, a centimeter is really, really teeny-tiny) then we would be seeing some change in Jim's behavior; headaches, speech problems and/or his balance would be off. But Jim's speech is actually improving - Thursday he looked at our pregnant neice and said "baby?" as in how is that baby. And Wednesday when out with Todd around 5:30 he motioned to the view outside the car and said "light", as in it's still light out. These are ALL words he has retrieved and spoken perfectly on his own! So there is NO decline in the speech. NO headaches. Balance is great and he's getting stronger. Weisburg did a few tests on him to see how his strength is as well as his proiferal vision and announced with a huge smile "He's really improving!"

Weisburg thinks it might be easy to mis-read the MRI due to how this mother-alien (my scientific speek, not hers) sits and she also wonders if it's the "avastin effect", which means the avastin could simply have good growth blood vessels happening in this area of the brain and it looks like the tumor has grown.

Thus, we are not convinced the tumor is growing and has enlarged. We'll wait to hear what Dr. Wen says about it. IF, and Weisburg feels this is a big IF, the tumor IS growing then that is change and we may look at the XL184 trial again or add CPT-11 (chemo) in with the avastin. None of us really wants to go to these other therapies unless it is absolutely necessary.

And now you know all that I know. I shall keep you posted regarding what Dr. Wen says wen he tells us (couldn't resist that one, sorry).

Enjoy this amazing weather. I am ready for spring and would really worry except the birds are even acting like it's spring - a woodpecker has been drumming out his heart's song on some dead tree up back, the LBB's (Little Brown Birds) are flittering and fluttering as they flirt with one another, the crows are doing some amazing acrobatic flight patterns that they have not demonstrated during the winter months and it looks like the buds on the trees are swelling. And the sap will start to run in March. All signs of spring and I'm buying it! So get outside this weekend and enjoy the northern warmth!

Loving you all right back,

Mary

Shower the people you love ....

posted by Mary Lello, Thursday, February 18, 2010, 11:45 AM

,,,, with love. Show them the way that you feel. (James Taylor)

This sounds so easy doesn't it? Why is it so difficult to do sometimes? Why can't we just shower those we love with love? Stuff. Stuff gets in the way; egos rise and conquer, feelings get hurt and fester, anger rears it's mighty head and devours all rational thought. So we miss chances to say I'm sorry. Maybe we avoid talking things out with someone because we fear it isn't going to work and project all the things that could go wrong if we even try.

I find myself using cancer as a baseline for this stuff (I know, DUH!). Six years ago I lost my best friend in the world to cancer. She was diagnosed in the spring and dead within 8 months. Eight months. I have no regrets with our relationship besides wishing I had been at her bedside more, been there with her and her family when she passed but otherwise she knew how much I loved her and I know she loved me. How horrible it would feel if she had disappeared from my life and I held all this 'stuff' that I wanted to talk to her about. All this ego and pride jammed into a purse that needed to just get thrown out to sea and be forgotten while she was alive. Think about this. Think about this next time you stuff an emotion and don't tell that person how you feel so that the air between you is clean and clear and you can then tell them how you love them.

And I think about this when Jim asks me to go to lunch with him or beckons to me to watch t.v. with him at night when all I really want to do is take the time and space for myself; to NOT be at his side but to just be left alone to do whatever I want or need to do. But I look at this man, my favorite person on the planet, and realize that we don't have the luxury of 'later'. We may not have many more 'laters' together in this world. I'm not saying I don't take that time, because I do and I must! But it really is about the true reality of being aware of what's important right now and not having any regrets when tomorrow comes.

And I've also learned that if it doesn't work and that person still walks away no matter how you try to clear that air, move on. We really don't have time for this. It's so easy to take time for granted, to assume we have an unlimited amount of it but there are no guarantees in this life. JIm Daniels has cancer - of ALL PEOPLE! I will never take it for granted again that there is endless time. I will not waste this precious minute on something that doesn't feel right to me or on someone who can't get out of their own way and chooses to remain petty.

But I will always try to shower those I love with my love. And I understand I ain't perfect so go ahead and call me on this if I'm carrying a big purse around with me when you see me!

Loving you all back

Mary

PS - we will find out how that MRI looks tomorrow (Friday 2/19/10) and shall let you all know what's going on.

MRI Time

posted by Mary Lello, Friday, February 12, 2010, 5:00 AM

Yes Folks, it's that time again. MRI Time.

We go have that done this morning. It's always a little nerve wracking, since there's always the chance we'll have bad news. But we're not really expecting this. There has only been improvements with Jim, however small they feel to us. So I'm going to bravely say that we're not going to see any changes in this tumor.

It's just always good to look. To make sure that there are no new little 'spots' and that the mother-alien is, indeed, still sleeping in there.

We're excited about the dinner Nance Trueworthy is organizing the end of March. Man,that's almost April and that sounds like Spring! This is a wonderful reason to gather, to eat, drink, dance and celebrate new life. We've got friends coming from California and Virginia to be here for this, and we'll get to see all of you, who we haven't seen in a very long time.

I shall keep you posted on the MRI results.

As always, we are .....

Loving you all back,

Mary

What does love look like?

posted by Mary Lello, Saturday, February 6, 2010, 4:30 PM

I'm not really going to tell any of you what love looks like. I'm only going to share with you what it looks like in our household today.

Jim had one of the hardest days I can remember. He woke and was doing fine until his shoe laces had come undone from their lacing. Thus he couldn't get his shoes "tied" .. his own personal way of tightening the laces so he can get downstairs where I can tie them, properly, for him. He had to call to me to come and do his laces up, and this set off a flood of tears. Imagine how inadequate you would feel if you couldn't even tie your own shoes, at 59 years old?

The tears didn't stop. At 8:30 Jim asked me to call our brother-in-law, Jerry, so he could "talk" with him on the phone. Jerry answered the phone and I said "Jerry, JIm is having a really hard morning. If you have the time right now could you talk with him?" And Jerry said "why don't I come over. I'll be there in a few minutes". Wow, was Jim's response.

Jerry is a kinesiology practitioner who has been working with Jim from the time he returned home after the surgery. I believe it is Jerry's work that has this tumor stable even after 4 weeks with no avastin. I believe it is Jerry's work that has Jim speaking far better now then anyone could ever have hoped he would be. I believe it is Jerry's work and his deep love for Jim that may, indeed, still have Jim here with us. But it was pure love that brought Jerry over, on a Saturday morning, to work with Jim and help him process all the emotions flooding through him.

The last couple mornings that have been so teary eyed I have sung two songs to JIm ... which sent us both into great sobs, but even this is healing. Each one I have changed the words to fit our situation, don't tell the authors. Yesterday's song was:

Oh, c'mon, smile a little smile for me, [Jimmy D],What's the use in cryin'?In a little while you'll see, [Jimmy D], You must keep on tryin'. ....

By Flying Machine

And todays song was:

Sunshine go away today,I don't feel much like dancing. This [thing's] come it's trying to run [our] life, Don't know what [it's] asking....

By Jonathan Edwards

We took a walk this afternoon down to the Bay where the wind was howling and gave me a popsicle headache. On the return trip up the hill we stopped in to see Todd who was cooking for the "Stupid Bowl" (my term, not his) party extravaganza tomorrow. For the first time all day Jim seemed OK. He had a smile on his face and no unibrow from his forehead compressed together with worry. Todd kept on cooking and delighted in having us there to watch him trim the fat off the meat (more crow food!) in preparation for his chile, drink a beer and talk about the Saints and Colts. Go Saints!

And today, this is what our love looks like: a call for help and an immediate response, tears shared, a door wide open and receptive.

Heck, maybe this IS what love looks like for everyone.

Tomorrow I am hoping for a better day .... but I'm learning to take each day as it comes.

Loving you all back,

mary

Winter's Moon

posted by Mary Lello, Friday, February 5, 2010, 5:15 AM

I woke this morning around 3:00 a.m. with the moonlight directly on my face. Like some Mayan temple we seem to have aligned our bed with the moon beams to hit us square in the eyes at this date and time. I don't mind, moon shadows can follow me at any time. I did wait until 4:00 before getting out of bed though, 3:00 feels a tad early even for me!

Lots on my mind and heart these days. Jim continues to do better with his speech. Dena, our speech therapist (from Northeast Hearing and Speech) said that this past Wed. was even better then Monday. Jim is retrieving words better, repeating difficult sounds with the words better, and finishing a sentence with the correct word. This feels so hopeful .... but it doesn't stop the tears.

All last week Jim would walk into the kitchen after meditating and have tears streaming down his face. And he can't even tell me what he's feeling. So I fill in the blanks for him, "this sucks", "it's so hard". Fear, frustration, horribly sad at not being able to converse or move in the way that is his being. All stripped from him. Oh man, the words "hard" and "sucks" doesn't even touch it!

So I've taken up my Bulldog coaching attitude again. I put my arm around Jim and remind him that something is changing in his brain. We all are seeing it and it's positive change. I tell him that he WILL talk again, that he WILL be able to share all he is thinking and feeling again, we all WILL hear his jokes and quick wit again .... damn it! And I let these 'wills' be a force within myself that hardens my own resolve, like the deep, belly, explosive "HA!" of a karate chop before smashing the stack of bricks I feel this "WILL" strengthen my own.

Oh, but how I miss him at times.

The moon light is being replaced by the red banner streaking across the horizon. The crows will be announcing their presence soon, hungry and cold from a night out under the harsh winter's moon.

Loving you all back,

Mary