A few THANK YOU's are in order!

posted by Mary Lello, Tuesday, September 29, 2009, 5:28 AM

I want to thank David Brink for writing to me and asking me to post his viewpoint of the ride. That was fun to read and to share the "captains" advantage point with all of you. Brink was amazing. That first mile was a little scarey for me as Jim looked unsteady and kept lifting out of his saddle because that right leg wasn't warmed up nor working well for him (Reese was yelling that Jim was fine, so I trusted this). A lesser "captain" would have been pulled off course and toppled the bike with that eratic movement happening behind them. But Brink was steady, and able to just power up the hills - which is hard to do when you have to keep it so slow!

Brink is an angel ... and a devil. We had 4 people running along beside this bike: myself, MaryMargaret, David Reese and Tim Stiles, the PT guys. On the down hills Brink would look over at me out of the corner of his eye and I'd see this devilish smile start to rise ... and I knew the runners were in trouble! Full out sprints on some of those downhills to keep up with this bike! "Damn you Dave Brink" I would yell, and we would all laugh!

David Reese, owner of Falmouth Physical Therapy, is just an amazing person. He's fun, hysterical, an incredible physical therapist and took this challenge on when I presented it and made it happen for Jim. For 5.2 miles he was yelling encouragement as well as pointers for Jim to keep him steady. He was checking in with JIm constantly and keeping us all laughing at the same time. He's such a gift to us.

Tim Stiles also works at Falmouth PT and is just as amazing. More of the straight man to David's humor he's simply kind and compassionate and works Jim real hard during PT sessions. Both these guys were there on their day off and had to run their asses off beside this bike!

Mick and Marcus Cochran. Mick had emailed me telling me he was going to fly up from VA to be here with Jim on this ride even if we were just sitting on wind trainers in the parking lot. Marcus, his son, drove up from RI to be here as well. I was asked to keep this a secret from Jim - which was incredibly hard for me to do because I was so excited with their coming! Saturday morning they showed up early for coffee. Jim was still dressing upstairs and I asked them to just come up to see Jim. To see the look on Jim's face when the Cochran's walked into the bedroom was, well, priceless! We've always shared some of fondest memories with the Cochran's and this weekend was no different. Can't thank them enough for coming to support Jim this way. (Hey Jude, we missed you. Next time you better show your pretty face!)

MaryMargaret also ran along beside. She is my best gal-pal who has been an amazing support system to me through all this. She is truly a sister to me, just not by blood. I'm not sure I could have survived this whole experience with brain cancer without her. I'm so grateful for her friendship.

And then the pelaton of riders who just wanted to ride along with JIm regardless of how far or slow he went. ALL of them people we have spent many miles in the saddle with: Art Davis, Mark Z., Jeff Bradley, Matthew Faulkner, Alice Grant, Terri D. It was so important having them there even though Jim couldn't see them he could feel and hear them and he'd shake his head in disbelief that these folks were there to ride with him!

A few non riders showed up at the start to just offer encouragement and to see Jim get on that bike; Kristine and Jacob Watson and Willo Wright. Jim was amazed by this show of love! Stacie Daniels was here too. She extended her stay with us in order to be here for this event. She drove the car behind us just in case we needed to stop and get Jim home. The car back there with the flashers going also kept other cars from coming too close and going around us too fast. OH, and Stacie lifted some of the daily grind off my shoulders for a full week. That's a wonderful gift to me!

There were a lot of other friends who were there at the start for Jim and had signed up to ride the NDY event. It was a gorgeous day and many of them have told me they had a great ride and a wonderful lobster bake after. Many who had not done this ride before have said they will do it again next year - and the dollars raised go for a very good cause.

And then all of you in the background who have read this and offered silent prayers for us or emailed me or written messages here with encouragement and "Hoo-Rah's" when reading about the ride. ALL of this buoy's us up. We ride an emotional roller coaster (in tandem!) in this house most of the time but this incredible support team that you all offer us is simply amazing and deeply felt by us.

Thank you all!

Mary

HE DID IT!!

posted by Mary Lello, Sunday, September 27, 2009, 5:42 AM

The following message is written by David Brink - who rode the tandem with Jim yesterday. An amazing day, truly.

Mary

Well here are the stats of the NDY RIDE

Distance: 5.2 miles

Time: 1:08:45

Avg. Speed 5.4 mph

Max Speed: 9.1 mph

It certainly was a GREAT day, a crisp but warm morning. Jim was like a horse getting ready to start the Kentucky Derby …he wanted to get going on the tandem right away.

I don’t blame him; it was a beautiful day and what a way to spend it…on a bike! Once we got going me (The Captain) and Jim (The Stoker) we started rolling out of the start with several cheers. The last time I rode with Jim was the “Raymond Loop”, for those of you who don’t know the Raymond Loop on a bike, it is the hilliest 65 mile bike bikes you can do from the Portland area. And now we get to ride together again. We started out the first mile (yes the first mile) with Jim warming his muscles, after they where able to loosen up, things just seem to be smooth. He had a nice pedal stroke that jived with mine and we kept pushing the pace. Dave Reese and Tim Stiles (Jim’s PT guys) were jogging at the side monitoring everything that took place. My focus was maintaining a straight line and keeping the bike at tempo, while Dave and Tim were making sure that Jim was OK. OK he was as Mary, Mary Margaret and several others jogging, were complaining that we were going too fast and that they couldn’t keep up. Art D. and Mark Z and few that were on bikes, didn’t have that problem. But everyone that was there gave tremendous support.

As we approached the turn to the driveway to the finish (mile 3.75) we ask Jim if he wanted to keep going. His response to me: Can we go FASTER! So on we went. I thought our jogger’s would turn off, but they managed to get a second breath. So all said and done we pulled off 5.2 miles. Jim was tired afterward, but was able to something he has not been able to do in a long time…ride a bike outdoors.

A GREAT DAY!

David

Not Dead Yet (NDY)

posted by Mary Lello, Friday, September 25, 2009, 5:36 AM

Yes, a little black humor there in the subject. I didn't come up with this though. This is the name of a fundraising bike ride that 2 doctors who live here in Falmouth have created. They are both cancer survivors and they ride to raise money for cancer research, cancer support centers, those fighting cancer now, the caretakers, and because - well, they're not dead yet!

Earlier in my posts I had written that they have organized a ride here in Falmouth and that I had this brain storm to get JIm on a tandem to ride in this ride (a tandem bike is "a bicycle built for two", as my sister said when she asked me what a tandem bike is). It was a goal 1 1/2 months ago that I thought just might be do-able. Last week it wasn't looking so good for Jim. His PT guy, David Reese, was coming up with other options - wind trainers in the parking lot? - and I would say, "well if nothing else he will be on his wind trainer this winter and we haven't been able to do that for months". NONE of these comments were cutting it for Jim. He wanted to do this ride and nothing else would compensate this.

We actually had a few fights over this. I think I was feeling pretty responsible that I had come up with this goal and that maybe it was a tad too big and now I had to help JIm understand that it wasn't the end of the world if he couldn't ride in this damn ride!

Jim heard "we're giving up". This is NOT in Jim's vocabulary!

David Brink (a good friend, a really strong rider who manages a bike shop here in town, Cyclemania) signed on to ride the tandem with Jim. He brought the bike to PT, he brought over bike shoes when we realized JIm needs to wear his brace to ride and the brace didn't fit in Jim's bike shoes, he showed up at PT to sit on the tandem on the wind trainer to feel how Jim's erratic cadence would feel while riding together. He offered encouragement and a few "hoorah's".

The ride is this saturday 9/26/09. This week we had to get Jim out on the road on this tandem. My nerves were fried. Wednesday was the day we would take the tandem outside in the parking lot and just see how Jim would do. I was asked to be there to help "spot" Jim along with Reese. I was wishing we had training wheels on this damn bike. I was looking at all that pavement and thinking what might happen to Jim if he hits it. David Brink reminded me to bring Jim's bike helmet. OH, RIGHT, DUH!!!!

We got Jim onto the bike and Brink gave Jim all the instructions. He also told Reese and I - who are standing on either side of the bike to catch Jim if he were to pull the bike off balance - to NOT touch or help unless they were going to fall. I knew Brink was right but it was really hard NOT to reach out and just hold onto Jim while they tried to get the bike started. The plan was to ride to the grassy area on the other side of the parking lot and stop.

Off we went. We got to the grass and Brink yells, "we're going over the grass and into Waldo's parking lot" .... GULP! But it went smooth. And then, by God, I could see in Jim's face that he was on his bike again! He was looking up ahead, he was steady and balanced, he was riding!!! With Reese and I running along beside they took several loops around the back of this parking lot that was dirt, pot holed and lumpy with absolutely no problems. Brink said, with some surprise, he could feel Jim's strength with the peddling and that he was really strong.

I got crying with pure joy at what this trial run meant .... JIM IS DOING THE NOT DEAD YET RIDE!!!! HOO-RAH!!!

Reese and I will be running along beside the tandem for safety sake this Saturday. I've suggested we dress like Secret Service who run along beside the Presidents limo but I don't have a black suit. And many friends have signed up to ride along with Jim. Our friend Mick Cochran is coming up from VA just for the weekend and to ride this with Jim (this means some good pictures too folks!) and many other friends will do the actual ride of 10, 25 or 55 miles - all dollars that will add to the fundraising pot for the Cancer Center in South Portland.

Another gorgeous, sparkling blue September morning is unfolding before me as I finish writing this. We Are Not Dead Yet! In fact I'm feeling more alive then I have ever felt in my life.

Loving you all back!

Mary

Jimmy D., Jimmy D.

posted by Mary Lello, Saturday, September 19, 2009, 5:46 AM

We saw Dr. Weisburg yesterday and got the bi-monthly infusion of Avastin. I have to say out of all these months of slogging through all this this week I am truly hopeful and "up"!

Dr.W showed us the most recent MRI and then pulled up the picture from the April 22nd MRI. In April that tumor had shape and form, you could see the swelling it was causing and all that white juju stuff around it. The one we had done last Monday shows a "shadow" for the tumor. It's a slightly different color gray then the rest of the brain picture, there is no real shape to it and no white juju stuff!

I have a few favorite words that I just like the sound of: "crepuscular", "juju", "Sisatobell Lane", and "necrotic". This is my newest favorite word. NECROTIC - it means "breaking apart", "dead or dying tissue". Weisburg said "this tumor is now necrotic". YEAH BABY!!!! She also said "Jim, you are now considered a survivor, you are now beating the odds and entering into the "making it" statistics". Remember this woman does not say things that she feels will give false hope or that she doesn't believe she can back up with her medical knowledge.

GOD, just writing this I am smiling from ear to ear. This is amazing news! That tumor no longer has the upper hand!

Our next challenge is to not just survive however, I/we want to THRIVE! We want use of the right arm and hand again, we want that leg to bend at the knee and climb stairs normally again, we want to ride our bikes together on the roads again or xc ski or trail run with Ella. And this week I'm saying... and WE WILL! I don't know how long it will take but we will thrive.

Besides, we have all kinds of incredible healers working with us doing alternative therapies; Jerry Sanders - our brother in law who is absolutely amazing and astounding! With his guidance I'm seeing big changes in Jim and truly believe Jim can heal all of this. We have Mary Chaney coming and doing acupuncture specifically for brain tumors for Jim and getting that right arm to have more flexibility while the needles are in. We have Jane Burdick doing Feldenkrais as well as meditating with Jim and keeping him involved in the Portland Buddhist community that is so very important to him. We have amazing care takers coming every week to be with Jim, taking him to lunch, reading aloud to him, fixing him food, sitting with him during his Avastin infusion and just performing wonderful acts of love in taking care of him while they are here ..... every week! And we have an amazing circle of friends who will just stop by for a beer or to say 'hi" or to see if JIm wants a ride in a 1948 Willy Jeep.

How can you NOT thrive when surrounded by so much healing love of so many people? I mean, really!

I'm not sure where this phrase comes from but all I can hear right now is "Come back to me Jimmy D., Jimmy D."!!!!!

I want to thank all of you who sent me your songs. That was so much fun for me and every single song got me crying. Even my mother sent me an old hymn that I had never heard (my dad was a minister and we grew up in the church so I was surprised at a hymn that I didn't know!). The verses were just so beautiful and rang true for me. I'm so glad to learn that many of you have a song you carry.

Now maybe it's time we all just sing and dance to our songs?!

As always we want you all to know how we are indeed loving you all back,

Mary

"How are you doing?"

posted by Mary Lello, Tuesday, September 8, 2009, 5:01 AM

Of course people ask this all the time. Of course they really want to know how I am, how I'm doing. I just find it really hard to answer sometimes and wonder if they want the long version or the short version?

The short version is "hanging in there" or "OK?". Yes, said with a question mark at the end. My older sister use make fun of that book "You're OK. I'm OK" by saying "You're OK, am I OK?" And this is how I feel. I know YOU are OK but I do question whether I'm OK sometimes!

The long version changes from moment to moment. At this moment I'm O.K. But yesterday morning when I looked up from the breakfast dishes and saw Jim at the breakfast table crying I wasn't so OK. How to explain, how to answer this question when Jim and I are grieving the loss of our wonderful life and trying to learn how to dance through this one. To make lemonade out of this batch of lemons that has been served us.

Jim said yesterday morning "I use to be such a positive person. I use to be able to see a possible good in some bad thing." Both of us use to be positive people taking life's knocks as lessons, as a chance to grow and transform but this one has knocked us both off our feet and it's hard to find our footing. It's hard to keep my faith that there is some divine plan here.

I'm learning how to cry easily though. No more stoic, dry-eyed Mary. I cry all the time now. I was out trail running with Ella and stopped to lean over, with hands on my thighs and cry. With drool and tears falling onto the dried Queen Anne's Lace I just sobbed as I asked the Universe what is the point here? As I stood and wiped my cheeks with the back of my hands a huge Red Tailed Hawk was soaring over me. At that moment I told myself "you're OK, you can do this" and I breathed in the late afternoon light and finished my run.

"How is Jim doing?" Well the short version is "OK. Slow, baby steps forward but as long as we keep going forward it's good" The long version is - sometimes he's incredibly frustrated. Sometimes he just puts his head down and cries. Sometimes he's very scared and sometimes he's just tired. Sometimes I hear him laugh, but not often now. Sometimes he feels angry but always more at the situation then any one person and always he is gracious, thankful for the littlest things and kind.

I always try to listen for the blessings dropping all around us. Yesterday they hit us with a THUD. A member of Jim's cycling team, Cyclemainia, had a cord of wood to give away and posted this on their website. Our friend Art jumped on it and asked that it be given to us. Art got "an army" of guys to come over to help. Jim and I stood on the deck and watched this group of friends unload and stack this wood .... for us. I got crying because the love at that moment was all around us. An amazing blessing to be so surrounded and embraced by the love of friends like this!

That was the fastest stacking job I've ever witnessed too!

And sometimes Jim and I cry because we do feel so much love for each other, for our family, for our friends - these are the more joyous tears but it's funny how such intense feelings of love can still make you ache.

At this moment I'm up too early and feel exhausted but Jim slept better last night then he did the night before so I'm OK.

Loving you all back,

Mary

PS - we get the MRI today. I hope to have Weisburg call us and give us a briefing on it later this week. I shall post what we know when we know it.