Thank you's are in order

posted by Mary Lello, Wednesday, February 25, 2009, 5:17 AM

Everyone who has visited 'from away', as we like to say in Maine, has been amazed at the outpouring of support and love that we have here. Mick mentioned it on the message board - how the meals show up all cooked and ready to be warmed, how the drivers arrive on time and ready to take Jim to radiation, how the care takers arrive to spend however many hours they are needed to be here with Jim. How even Ella is being sponsored! And this is just what happens here at the Pitt!

Then there is the fund raisers being organized with the pasta social and Jim's photo show. So many people mobilizing and volunteering to pull these together all for our benefit.

Then there is Jim's fund that keeps generating more for us. This one is the hardest for me - in these troubled times so many of you have offered us help financially that is just so incredibly generous. And as these medical bills start coming in and I have more and more sleepless nights around so much of this I am truly comforted by the nest egg that has been created for us from which I can draw on.

I have tried to send thank you notes via snail mail or email to folks as I get names of donators or when you have cooked an additional meal and then driven it over here just for us. I have to write here what I have written in so many of those notes because there is so much support coming that isn't always as tangible as a dinner but we are still so very aware of the love. The fact is "thank you" does not feel nearly close enough in expressing our gratitude to and for this community of so much love and support that is offered in so many different ways, all of it so incredibly wonderful.

In Bhutan, a small country in the Himalaya (that Jim and I are determined to visit!) they are known to say "thank you, beyond the sky and the earth". And, truly, this feels so much closer to how Jim and I feel in expressing our gratitude. So:

Thank you, dear friends, BEYOND THE SKY AND THE EARTH for all you have done and are doing to help us!

With Love,

Mary

Fridays

posted by Mary Lello, Friday, February 20, 2009, 6:19 AM

I think the hardest part of writing these "blogs" is coming up with a new and creative subject! The subject for today is Fridays. Fridays are hard. A week of radiation begins to build up for Jim and he gets kicked a little harder on Fridays then the other days. This means Saturdays can be hard too, but at least he gets to sleep in a bit and sometimes I even give him a day off from all those damn supplements on Saturday. By Sunday he's usually feeling a bit better and it's back in the microwave on Monday morning.

The last radiation treatment is March 5th. As much as we are looking forward to this being over I'm a bit nervous about this too. This is the only treatment they really have to beat back these cancer cells, to shrink and to destroy the tumor. So I'm hoping for a perfect score from all this toxic shit.

Or I should say this is the first line of attack - there are some drugs out there now that are doing some wonderful things in keeping these glio blastoma's from growing back. And we are gonna get us some of those after the radiation ends! We see Dr. Weisburg again this morning so I plan to discuss with her getting us back down to Dana Farber or what she thinks our next course of action will be. We trust her and truly feel she is going to help us do or get everything that is out there right now to try and give Jim a longer life .... they rejoice about a man with a glio who is now 3 years out. Three years. And I thought Jim and I might live to be old together .... and there is the hope and prayer that we will have this opportunity but our reality, and our concept of mortality is definitely different these days.

What is really wonderful though is when I get home from working a few hours and see Jim and I ask him how his day went and he always says "it was a great day!". And this is what happens when you have your death standing to your left - always our constant companion from the time we're born really - but when you have cancer you can feel that presence just waiting. So, yes, EVERY day is a GREAT day. And this is an amazing gift really. To feel this, to know this, to live "each day as if it was your last". Such a cliche, but when you are actually living this way it puts a different spin on each day, each moment, each wonderful breath.

We go down to Lexington to see Dr. Belanger again today. Todd, our ever faithful chauffeur, is driving and Mick Cochran who is up visiting from VA will also come along for the ride. It has been so wonderful to have Mick here this week. We go back a long way with the Cochrans when we all lived in Rhode Island (Rude Island as we called it), to an era that was just wild and wooly; MTV, skinny ties and big hair days. And Mick and Judy were always too much fun to be with and both their boys were equally silly and crazy. So we've had a lot of fun reliving stories and remembering characters from the Providence Journal staff with Mick. And believe me these stories and characters would make a hilarious book - and I wouldn't have to make any of it up!

Mick has been amazed by our astounding community that surrounds us, supports us and loves us so deeply. It IS astounding ... but this is a subject for another "blog".

So it's Friday, another bluebird day out there with a light dusting of white snow and a deep blue sky and an adventure ahead of us as we journey into another "great day".

May you all feel a little bit of this for yourselves too.

Loving you all right back!

Mary

Bust Your Booty

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posted by Mary Lello, Monday, February 16, 2009, 6:09 AM

Many folks are asking how my 'day off' was. It was fabulous. To head to the mountains with 3 wonderful women was just so much fun. Of course we didn't get away nearly early enough and so we knew we had a shortened time to do anything. We got to the trail head of the Bald Faces in Evans Notch and realized we had brought 3 pairs of snowshoes for 4 gals. Oops. So I wore my stabli-icers over my hiking boots and hoped for the best. The trail was hard packed so the stablicers actually worked great provided I didn't step off the trail - then I could sink in to my knees.

It was a gorgeous day, cold with a strong wind but we were in the trees and could see the peak as we got higher. I'm suppose to make up some fantastic story as to why we didn't actually summit, but truth be told ... we wanted enough time to get to the brew pub!

It was fun and I have to thank Leanne and Art so much for offering me an entire day to go off like that. And on Valentines Day too!! Thank you Art and Leanne!

Yesterday Maureen left. She is the first person to come and spend a week here and not feel ready to go home. I'm not sure how it happened but we didn't exhaust her and beat her up energetically while she was here. The woman is made of steel!

It was a great visit and we loved having her here.

After we left Maureen at the airport Jim and I headed out to Scarborough where my mum and my sister, Karmo, live (not in the same house!). Karmo's hubby, Jerry, had created the annual "BUST YOUR BOOTY" sledding course in their backyard. Not a huge hill but one that had bumps and twists and turns and if you didn't ride it right you could fly into the outdoor fire pit (yes, with a fire burning!) or onto their deck or smack into a tree. So the course had it's exciting moments. My youngest sister, Sara, came down from Orono with her family (Shep and the 2 boys, Sam and Joe), and other friends of Karmo and Jerry's had also come over for the day so there were lots of kids and adults all busting their booty's on this course. It was a lot of fun.

Jerry took Jim for a long walk down to the water where they were invited in by the new neighbors - who have built a mansion down where we always have walked to the rocks. The whole neighborhood has been developed and there are HUGE houses out there now. Jim said the house was gorgeous and they had an amazing view looking out towards Scarborough beach. My blah blah sisters and I were jealous of this as we've wanted to get into that house and see the inside now that it's finished.

Jim was pretty tired after that long walk so he took a nap upstairs at Karmo's house while some of us continued to do 'one more run'. We headed home around 5:00. Our good friends, Matthew, Alice, Todd and MaryMargaret showed up and cooked us a lobster dinner with all the butter Jim could eat! AND they stayed and cleaned up after too!!! Amazing.

Jim is becoming more and more independent which offers more and more of some form of a 'normal life' now ... but we have a bit of a long road ahead still. And it still hits me hard at times and at odd moments that "JIM HAS CANCER!", and sort of takes me down, like being hit in the back of the knees by a fast moving dog. It can't always be predicted but it can't be ignored when it hits me either. Last night was one of those times. I used Ella, our dog, as an excuse to leave the dinner party as "she had to go out" and I just sat in the dark on our deck for a few minutes. My eyes would not stop tearing up - no big sobs but just my eyes filling up and spilling over.

The stars last night were astoundingly bright and beautiful in that cold winter sky. I was glad I had stepped away from the dinner party for just a moment and had the gift of seeing those stars like that.

Loving you all back,

Mary

Hair and other stuff

posted by Mary Lello, Wednesday, February 11, 2009, 7:02 PM

Jim is losing his hair now. It's expected but it still looks a little mangy. There is the cutest little boy who has radiation at the same time Jim goes and I had noticed a couple weeks ago that his hair was getting real spotty too. It's a wee bit hard to see the kids in the radiation waiting room. Hell, it's hard to see anyone there as we all know why we are all there. We all just hope that this toxic process is doing what we are asking to be done.

I can feel that we are evolving into the next step of all this. I'm not real sure what this step actually is but things are feeling different. JIm is wanting to take more charge of things and to push himself a bit harder and to be trusted to do certain tasks. I am needing to learn to trust that he knows what he can and can't do ... and he's showing me that he does. He was pushing the activities too hard and his doctors told him to back off from that as fatigue is the last thing he needs to bring on himself. But he's able to dial the phone now and, when not too tired, is real coherant and he wants to be allowed to do things by himself. Safety first, of course, but he's actually pretty safe to move around the house now, can see things again without too much of a blind spot. And is more hopeful all the time.

Although the supplements are a MAJOR pain in the ass and he will sometimes get the gag reflex just by looking at the pile of them that he has to take - we might be seeing the effects of them. He is tired with radiation but he is not wiped out. We talk about the supplements "killing cancer" as he forces himself to take them but last night we both agreed that maybe it's these supplements that are helping to keep his energy up and keep him as healthy as possible while undergoing all the radiation and chemo.

And today the folks at radiation said Jim is being called the "rock star" around the office because he is doing so incredibly well at this point. So it isn't just us seeing this!!

Jim had a good day today. It was beautiful here, fairly warm and sunny. After a wonderful morning run I did a few errands and then attacked the wood pile that needed to be put away in the shed before the rains came tonight (some one bought us a cord of wood. THANK YOU, if that someone is reading this!!!!). Todd - Jim's care taker today - and Maureen both helped me with this (thank God!!) and we beat the rain. Jim was able to sit out on the deck in the sunshine and watch us work. It was great to see him outside like that but I also knew in other times Jim would have been the one directing all this and doing most of the heavy work needed. A new world for us.

Then Todd took Jim for a nice drive into town and around Cape Elizabeth. Jim is a man who likes to be on the move so these outings are very important and a needed break for him. He came home tired but it's a good tired. He's also learning that the whole exercise thing - though important - must NOT be over done. He's really starting to get this.

And I am starting to need time away. As I mentioned earlier, I am a very independent lady and need my "out there" time. So this weekend friends have offered to give me an entire day off on Saturday. Since Maureen is here I think it would be nice to head up to the mountains and either xc, snowshoe or trail run with our stabil-icers depending on the conditions of the ski mobile trails. I'm looking forward to this. Chessell, MaryMargaret, Maureen and I are heading for the hills!

I'm not in the same shape as these BMW's (Burly Mountain Women, as Donna has called her Colorado clan of women!) but I don't care any more. It used to be important that I was as strong as, as fast as, as fit as .... but all that has fallen aside these days. Funny how that works. It's similar to a sweet friend who came to clean our house while we were in Boston and wrote this note to us about how she had broken a glass of ours. The note sounded so apologetic ... after she had volunteered to clean our nasty house!! You know what? It's just stuff. All of it is replaceable. None of it is worth THAT much. In the situation Jim and I have been heaved into "stuff" no longer really matters. LIFE is what matters. Being here today matters. Stuff is so NOT important. Being the strongest and the fittest is NOT important. But being alive, being with a loved one, being here today ... priceless.

Yup, there is hair all over the bed pillow, all over the bathroom sink, all over the bathtub. It's just stuff. It's just hair. It may or may not grow back. Not that important in the big picture. Killing that tumor and all those damn cancer cells IS important! Being here in a few weeks, a few months, a few years IS important!

Thank you all for the food you are bringing that is perfect for Jim's diet and so yummy!

Thank you all for the love, the cards, the visioning and prayers you are sending to us and into the Universe. I DO believe it's important. I DO believe all this love from around the globe (literally) is a strong and a powerful force. So please continue to hold us in those prayers, thoughts and visions. This is the RIGHT STUFF!

Loving you all back, deeply,

Mary

Morning sunshine

posted by Mary Lello, Sunday, February 8, 2009, 7:49 AM

First off - I logged onto the Well Wishes section and there was 146 messages .... and they were ALL from me responding with NO message on 2/27 at 3:39 p.m.!! God, I know I'm a spazz at this stuff but I have NO CLUE how that happened!!! I just spent 15 minutes deleting all those empty responses, as you can only delete One. At. A. Time. Now I'm hoping it is deleted for everyone who is logging on too. I mean, that was just obnoxious!!

Jim is beginning to really feel the effects of the chemo and radiation in his system. It's almost 9:00 a.m. and he is still in bed feeling pretty lousy. Once he is up he truly rally's big time - riding his bike last night, doing sit ups and some yoga as well before going off to dinner with friends. I'm not sure where or how he does this but he told me he wants to gain weight and he wants to get back in shape. They say exercise is good during all this and the more active you can stay the better to keep your strength up. He's doing pretty well with this aspect then.

Me? I totally hit the wall yesterday. You know how you feel when you have a bad cold and you think of all that you must do but you really don't care and you end up just lying on the couch? That was me yesterday, except I'm not sick. I dropped the ball and slept away a good part of the afternoon. And for about 1/2 hour I think the house was completely empty. I'm not kidding!! Not another soul here but Ella and I as David P. had come by and took Jim out for a couple hours. I lied on the day bed thinking "wow, there is not ONE person here right now. I have the house totally to myself!" And then I fell back asleep.

Today I feel a bit more refreshed and will probably go out for a trail run or ski with a couple friends. Looks like things are actually melting out there so I'm glad I've regained a bit of energy to be able to go outside and play for a bit.

Maureen arrived from California and so we have another fresh and ready person here. Jim and I do a really good job of just sucking the life out of folks who come to stay with us. Roseanne left yesterday (saturday) and I think she was ready to leave. Greg will leave Tuesday. He's been FANTASTIC and amazingly helpful and another right hand for me (I call him "my man slave"). But he too is getting weary and will be glad to return to his mountain home I imagine.

The care takers and drivers have all been trained by the Jalbert's and so that schedule will kick in this week. It will be good when that system is up and running smoothly as right now it feels a little overwhelming but I know that it will become a God send for us and allow me a little bit more time to run an errand, drop the ball more often perhaps (and it will still be o.k.) or get myself outside to exercise since I want to get back in shape too!!!

Things are progressing here as they should. We have fantastic doctors, we have fantastic support system with friends who are just incredible. I mean this ... INCREDIBLE!!! And we are fighting this cancer with everything we've got. It's all we can do.

And today is "a beautiful morning ... think I'll go outside for

awhile ..."

(after I get Jim up)

We so love you all, please know this!

Mary

Take Good Care of My ....

posted by Mary Lello, Wednesday, February 4, 2009, 12:13 PM

I may be dating myself here but remember the song that went "take good care of my baaaby ..... " ?

I realize this is how I am feeling now as all the different drivers and care takers are stepping in to care for Jim when I have to go to work, run errands or just get myself outside for some excercise and 'free' time. We are entering another new phase and losing another group of 'live in' care takers as Greg and Roseanne prepare to go back to Colorado.

Greg put out a great list to all of you as to what you might need to think about. I agree with so much of it. This whole experience does bring up a lot of things for people. The good with the bad. It's important to stay honest with what ever might come up. It's also important to leave some of it at the door. Jim is fighting for his life and I am on this path with him. So there isn't much room here for a lot of other stuff.

My close friends have always told me how I can be "brutally honest". I would hear "gee Mary, tell us what you really think" type jokes. Well, if you thought I was cut-to-the-chase-honest before you ain't seen nothing yet!! And my first and foremost concern is that Jim is well cared for. Each of you must come prepared to make Jim your priority while you are here with us. To be part of "the pride of lions". This may mean asking some people to leave if they are over staying their welcome or just zapping too much of Jim's energy. It may mean suggesting to Jim it's time to nap. It will mean being vigilant about his safety when he is up and moving and to not always share with him your history or another's story about sickness and illness. It's not always helpful to hear.

I know I am the best advocate for Jim regarding his health care now. But when I walk into my office I am an advocate for the person who has come to me for healing. So what I need the most from the care takers who are left with Jim is knowing that the person there is now doing my job. I can't worry about Jim when I leave the house. I don't have the luxury of not being able to work. And the work I do requires that I leave all my stuff at the door and be 100% present for the person on my table. In order for me to do this I need to be able to feel confident that all is well at home. That the people there are advocating for JIm and if anything goes wrong they will call my cell phone and let me know. This is very important.

So humor me here as I'm sure as you read this you are thinking "of course Mary", but I just need to say all this. And I do know that each and every one of you who has signed on has done this because you love Jim also and you WILL be there for him .... and therefore you are there for me too.

There really are no thank you's big enough for this. So just know that Jim and I truly appreciate all that is offered, all the love that is offered with each cooked dish that you bring, each phone call or email or card that you send, and how so many of you have signed on to just show up .... and you are indeed showing up!

So, take good care of my baby, don't ever, ever let him go ....

Thank you all - from the bottom of my heart, thank you,

Mary

Goals

posted by Mary Lello, Tuesday, February 3, 2009, 4:51 PM

I love looking at the pictures. I think it's my favorite place to hang on this website. I love the newest posts, which are of Jim at the Stupid Bowl party on Sunday night. He looks pretty alert and bright eyed considering how tired he was. In fact, in one picture David Puelle looks more like the brain tumor patient!! (David, I'm just kidding).

And the picture with JIm holding the camera up and snapping a "moment" is one of my favorites. We have so many pictures in our family album of Jim doing just that. It's what he does. It's always been his passion and I have put my goal out there - that he will be able to go out and capture those moments through his eyes again.

So we had a good football party. And even though I really wasn't too involved with either team (I like the Pats) I was cheering for the underdog and they did an excellant job of offering great entertainment. Isn't that what sports are after all? Just entertainment! But we were out of our seats and screaming at the t.v. hoping for that ONE GOAL that would win the game. And our underdog ALMOST got it - but the Steelers were superior and they achieved that final goal with mere minutes left and won the game.

I ask Jim what his goals are each day. And each day he talks about wanting to push himself a little further and a little harder. "To ride my bike for 35 minutes instead of 30", "to take a longer walk today". And today he achieved both these goals.

I was asked today by a very wise and wonderful woman "how have your emotions changed around Jim with all of this?" Wow. I didn't really know how to answer. But I've been thinking about it all day. I realize just how much I love him. He's an amazing human being and truly my best friend. And I'm seeing Jim stripped down to his very essence now. And that man is incredibly sweet, compassionate and intelligent.

That man also likes to set goals. Knowing him for 29 years I realize he has always done this they just were bigger then they are today. But what always struck me about Jim, when I was first getting to know him, was how he would say he needed to change something and then he would. Or that he wanted to do this or that, and although it seemed impossible at the time, Jim could always pull it off. Always.

And I realize I may freak out when he needs to stand in the shower instead of use the shower seat, or he has to do a simple task without my help and will gently push me away so that he can do it. And this is Jim. This is all part of setting those goals, rising to that challenge and then doing it.

And I also realize it is this kind of determination, this kind of goal setting and initiative that will help him survive this. It is the will to get on that bike again today and ride for 5 minutes more then yesterday. The will to walk in a straight line and the joy he expresses when he does that without anyone holding onto him that is just his spirit. And I so want to honor this spirit. Because it's so strong and so pure and it's rising to meet one of the biggest challenges of his life.

And the goal to win this one is one of the most important ones there is.

Loving you all back,

Mary

Stuff

posted by Mary Lello, Sunday, February 1, 2009, 1:30 PM

A couple of important things to share. One, Jim is now on a high protein, high fat and very low carbohydrate and zero sugar diet. After meeting with Dr. Belanger, the naturopath, on Friday we learned that the brain only fuels with glucose and keytones. Cancer cells fuel from glucose but can't really tolerate or use keytones. The body uses proteins and fats to produce keytones and sugars and carbo's to produce gluten. THUS, drum role please, Jim wants to eat so that his body produces a lot of keytones for the brain but very little glucose in order to starve the cancer cells. YEAH BABY!!

No more lasagna for Jim. No more brownies or sweet breads or dark chocolate. We're still struggling with the diet a wee bit and waiting to get some recipes and lists of foods from Belanger's office (hopefully Monday?) and then we'll start to get a better handle on it all. But for now, meat stews with veggies (but no WHITE potatoes - sweet potatoes are O.K. though - I think) or roasted meats, fish, chicken, eggs, cream, butters ( think Atkins diet here!). As Stacie said, Jim can eat lobster with all the butter he wants!!! Yup. So feel free to bring lobsters over for dinner (heh, heh!). I, on the other hand, CAN NOT!!!

Secondly, we are doing introductions this week while Greg is still here with me. This means, if you are a caretaker plan to show up at your designated time but you will not need to plan on staying for the hours you have agreed on. We will just give you a run down of how to best care for Jim, what you need to do for meds or supplements etc. If you are a driver I think Greg or I will ride with you this week to show you the ropes on that too. The week of 2/7 we will probably launch into full swing with folks doing the schedules.

Stacie left this morning very early. It was an emotional parting. We miss her horribly and I feel that I am now the only real advocate for Jim, which feels like a bit more weight on my shoulders. Never thought my shoulders were so broad and strong but perhaps none of us really knows what we are capable of doing. Still, it was a good time for Stacie to go. She misses her dog and her life and we are feeling that she helped us so much while she was here that we can carry on without her now.

Roseanne, Greg's wife, arrived yesterday from Colorado. It feels good to have a new recruit here. There is a new, more vibrant energy with her arrival - something Greg and I welcome - and Roseanne is just so loving, capable and wonderful that it's just great to have her here. She will be leaving on Sat. 2/7. Greg plans to leave on Tues. 2/10 and my friend, Maureen, from California (originally from Maine) will arrive on Friday 2/6 to take up the spot of being a more consistent care taker while I'm at work or needing to do other things. This will help those of you who are scheduled to be here and you are flying solo on those times. At least with Maureen here you can count on one other person being here with you (either myself or Maureen).

NOW, regarding the naturopath. Amazing. Really fascinating. This man, Jim Belanger, has got the chemistry of cancer and our bodies DOWN. Bob was right, Belanger has devoted his life to helping people fight cancer from the more natural approach. He uses supplements to help radiation and chemo do the best job it can. He uses supplements to neglect cancer cells of the products (vitamins, minerals, free radicals, keytones .... ) it needs and wants and starves the cancer cells with a certain diet depending on where in your body the cancer is. Only malignant brain tumor folks get put on the high keytone diet, for example. As a biology major and health practioner myself I was just fascinated with this whole run down.

And now Jim has to take more pills then imaginable!! Supplements before eating, after eating, before bed, after bed, before radiation and after radiation, before peeing and after peeing ... O.K. I'm kidding on that last one but it is really pretty overwhelming!!! But we're slowly getting the system down and getting ourselves organized around it. Many of these supplements are to be taken only during radiation so it can all change in another 5 weeks or so. But as Jim said to me when I handed him a whole bowl of pills to take "hey, it's better then the alternative".

Yes, my sweet heart, yes.

Thank you all, a thousand times thank you, for all you are doing and all the love and support you are offering us.

Loving you all back,

Mary