I have a lot to share

posted by Mary Lello, Tuesday, January 5, 2010, 5:30 AM

I want to let all of you know how Dana Farber went as so many of you have emailed me or called us to just let us know you were thinking of us yesterday while we were at DF.

We actually got good news. I would even say GREAT news! Jim is NOT a good candidate for the new drug XL184 because after being off avastin for 4 weeks there is no change in the tumor, or such slight change that it's even hard to tell if there is any change at all. Dr. Wen said that some people with Glio's go off avastin for 4 weeks and there will be a huge surge in the tumor since the avastin is only suppressing the tumor. This is NOT the case with Jim - Jim's tumor barely changed.

There is some light coloring around the tumor and Wen isn't clear on what that is - swelling possibly but he's not sure. If Jim's symptoms had changed a lot - gotten much worse - then he would say the tumor WAS acting up and would want him on XL, but Jim's symptoms are only slightly to marginally worse and it could be just fatigue from all the traveling. As always there are more then one variable .... but Wen and his assistants agreed that fatigue would play a huge part in this.

Jim was disappointed. It was a long, hard day, he underwent a battery of tests and then we weren't put into the trial? What the hey? BUT, Wen wants what is best for Jim and this trial would ask a lot of us in terms of time and energy going down to DFI on a biweekly schedule as well as needing to spend a couple days at a time at DFI in the first 6 weeks of the trial. Of course we would do whatever is needed, if indeed this WAS needed - but it appears it isn't.

In addition, the new drug has a lot of side effects and you never know how an individual will respond to the drug and those. Jim tolerates Avastin very well with barely ANY problems - Wen can't promise this kind of reaction to the XL184. Avastin is working well for Jim, why introduce a new drug with too many unknowns?

So he feels staying in Portland and on avastin is our best treatment plan for now. If things change or get worse then there is a window open for up to 4 months for the XL184 trial.

I will call Dr. Weisburg today and let her know we are ready for another infusion of avastin this week. Besides, we've missed seeing everyone in that office! If life could change so much that I need never go back to that cancer center in Scarborough I would be happy as a clam - but this IS our life now and those folks in Scarborough are wonderful and we have missed them!

Shall post more about our trip tomorrow but wanted to let everyone know our good news.

Loving you all back,

Mary

Transitioning

posted by Mary Lello, Monday, May 3, 2010, 1:00 PM

To all those still checking on our status here ... Jim is starting the transitioning process of releasing himself from this world in order to enter the next. Just yesterday we were allowing all to come, he was awake, aware and wanted to be surrounded by a party; dancing with me from his hospital bed to old Linda Ronstadt and singing along to the lyrics. But today, he's going inward ... although he did do a little thumb wrestle with Stacie when she held his left hand. I'm not kidding!

We are allowing only 2 non-family members into the room at a time. We do not want to try and pull him back in any way.

It's actually been a pretty beautiful process so far. Do not feel you need to come, we all know how much you love him but if you wish to show up then do. Even just sitting outside on the patio here at Gosnell house in Scarborough is wonderful.

Love,

Mary

Hospice

posted by Mary Lello, Saturday, May 1, 2010, 9:45 AM

It's time to let you all know where we are at in this process.

We will be going to the Hospice house from here. We will not continue with treatments except to keep Jim comfortable. The doctors have said he may last for two weeks or less.

This is the end, we all knew it would come at some point ... I just didn't think this point would come so soon. And I think I got complacent, just a little bit, in believing that Jim was so incredibly strong and might even beat this, somehow. But, like so many others, "it" has won. The real healing happens for Jim when he can leave this broken body and be his wild and free self again.

I'm writing from the hospital room. Time is getting short and it's difficult to write much. Perhaps there will be one more post when all is done. I may need to reach out and remember that this community is here for me too.

He loved every one of you so much ... as you loved him.

Mary

I believe in magic

posted by Mary Lello, Friday, December 25, 2009, 7:00 AM

Christmas morning and we are in Glenwood Springs with Stacie and the Grays. It's been a good trip so far and Jim is doing very well considering the major changes in his routine.

He's shed a lot of tears. He cried yesterday as he got ready for his morning nap and I got ready to go for a run up into a canyon that he and I always loved to run up. I tell him it's just as hard for me to be going without him as it is for him not being able to come. But I carry him with me on every single run. Yesterday morning I could see him up ahead of me, still running straight up the steep pitches when I have to stop and walk due to the altitude. I never understood how he could do that but he was always so strong, so beautiful in his stride and broad smile.

I walked into our bedroom yesterday looking for JIm and he was sitting on the bed crying. This is NOT easy. Even though it is so wonderful to be here and being with his sisters is pure joy for him it just sucks that he can't converse with everyone. As you all know, Jim always has a lot to say.

But the good news is he keeps trying. Even when it's just jibberish that comes out he's TRYING and as long as he keeps doing this the more his brain will wake up and say "OK, lets make these connections happen then".

I believe it WILL happen. I believe in magic.

December 25 and we are here to celebrate a birthday. I'm gazing up into snow covered, juniper laced ridges that have always had the ability to take my heart soaring. I'm beginning to ask for help again from the spirit world verses curse them. I'm asking the Creator to help us understand what this is about, though I don't expect an answer will come real soon. And I'm going to make sure that this Christmas Jim laughs more, cries when he must, and make this the best damn Christmas we've ever had.

I believe. I believe in Santa, and spirits and seeing Bald Eagles as being a good omen. I believe in magic.

Have a joyous day today, and believe in the magic that is in the spirit of today,

Mary

Crows

posted by Mary Lello, Tuesday, December 15, 2009, 4:00 AM

I get up early. The wee hours of the morning is MY time. I get the fire going in the stove, get the coffee on and then I'm able to sit and read or write without always listening, without waiting to hear the "Mary!" that happens all throughout my day. I sit in our picture windows that look out over the bay and watch the morning unfold.

The last couple mornings have been astoundingly beautiful. As the sun pulls itself up out of the Atlantic the morning bleeds into the sky with a layering of colors. The horizon layer has been a blood orange red that smudges into a ripened peach and then topped off with the palest yellow. Above all this vibrant color is a sky that is closer to a light purple then blue and directly in my line of vision sits the waning moon. For 3 days now I've watched this moon grow thinner and thinner. Yesterday it was just a sliver, like a raccoons whisker, that reflects the rising sun with a golden hue turning silver as the sun gets higher.

All the trees that I look through to this incredilbe display appear as a wood cut, each branch deeply silhouetted, black lines etched into the scene.

And then the birds begin to move across the sky. Families of crows on their morning commute from their roost to their different territories. I watch for my 7, who come in over the bay and head straight for the trees around our house. They sit patiently there until the sky loses all it's cocktail layers and the white light of the day takes over. If I take too long in going out with their breakfast then one crow will fly into the big White Pine directly in my line of vision and just sit there being oh-so-obvious! This is the same Pine that held their nest last summer. The same Pine I stared into after returning from the longest day of my life at the ER room after Jim fell down the stairs. The same crows who had me sit up and notice their nest and gave me the energy to move again.

I have a thing for these crows.

They are teaching me so much. For instance I've learned that crows do NOT eat just anything. They don't like peas or cranberries in cranberry sauce (I found one gooey cranberry on my car windshield - a little "see these? Don't like them OK?!), but they loved the turkey skin and other yucky parts that we humans didn't want to eat. They like dog food, Saltines and peanuts in the shell. They don't like my looking at them too long. Though one of the younger ones tolerates my looking up and talking to him/her far longer then the timid adults who fly screeching to a distant tree because I acknowledged where they had perched.

They talk to each other, they announce that I'm out there, announce that breakfast is ON! With different voices then the typical "caw caw" they seem to discuss many things. Last spring the young fledgling would "coo" to me when I walked out. I think his adults may have told him to "cut that out!" since I haven't heard this conversation in awhile now.

And then they are a lesson in patience. They wait so long after I've put the food down and return to the house, making sure there are no lurking neighborhood cats or other dangers to a Crow before swooping in and landing on my lawn to grab a morsel of food and fly onto a neighbors roof to eat.

They make me smile, every morning. Which some mornings is greatly needed and I'm very grateful to these birds for helping to change my perspective on the day at times.

Jim is looking real good these days. I posted a picture that our friend, Ted Tinson, took that captured that look. And his awareness, his cognition, is much sharper now. Jim is truly there in social gatherings understanding all that is being said...but he can't talk, he can't really participate in these conversations. This is such a harsh and cruel thing for him. He will get easily stressed if he is going to be with someone outside his comfort circle because the act of engaging with that person is so difficult. He wants me to be there with him or he'd prefer to not go. Not always easy for me when I feel so starved for alone time. He's an extreme extrovert, I am an introvert. But through all this our natural tendencies are being forced to alter - I must keep the conversations going, I must be the social one and Jim must sit quietly beside me. Like my crows, Jim and I have developed a language all our own and he needs me there to help others understand.

My Crows are arriving. I hear them announcing their presence in the 'hood. A new day is here and it's comforting to know that I begin it, at least, with a smile.

Loving you all back,

Mary

Christmas

posted by Mary Lello, Wednesday, December 9, 2009, 4:45 AM

Christmas has always been my favorite holiday. It will forever be tainted now, of course. December 25, 08, Jim is acting very strangely and pictures of me from that day show a pretty strained 'smile'. December 26, 08 - seizures at 5:00 a.m. I didn't really know what they were or what they meant but I shall forever be able to recognize a seizure now. Dec. 27, 08, Blue Hill ER and a CAT that shows "something" on Jim's brain. Dec. 29, 08, Jim's surgery at MMC and the discovery of a whole new vocabulary and the start of an entirely different life.

And as we approach Christmas '09 Jim is still here . He's a fighter. Donna and Stacie had talked about trying to gather somewhere and share Christmas together this year. This discussion started back in September and I didn't entertain it too much as the cost of flying financially, physically and mentally felt over-the-top impossible for me. Jim, however, has wanted to get back on a plane since last January. I'm not kidding!

I would engage in the discussion but I really had it on the back burner ... far back! Then in Oct. an angel appeared and gave me an envelope and with tears in her eyes said "please just except this gift. Please just stash it away and use it for when you and Jim can go do something fun again. Please!" And with tears in my eyes, I accepted. And I swear if she had not said to use it for something fun it would have gone into paying bills ... but an ah-ha moment occurred and I thought "plane ticket?".

First over-the-top impossibility just got solved. OK then, where should we go? California? Colorado? Hawaii? (yes, this had opened as a possibility at the same time but it just wasn’t going to happen for December). Donna and Mark were saying to Stacie and I that we should all just gather at their house in Glenwood Springs, CO. Tickets to Colorado were now do-able, traveling there however felt incredibly challenging. The bottom line was, I would NOT travel alone with Jim. He’s stronger and more independent now, but I could not envision trying to navigate an airport, baggage, tickets, security and all of this with Jim by myself.

First step was to see if our friends, the Jalberts, in Evergreen could let us land there for a night as they live only 45 minutes outside of Denver. Well, these dear friends could do better then that. Greg is returning to Maine the week before we leave to visit with his daughter in Portland and then he will fly back out to CO with Jim and I. Donna and Stacie drew straws to figure out who would fly back with us to Maine at the end of the holiday. Donna got lucky (I hope this is how it feels?!) and she will help me with Jim on the return flight and then spend the New Year weekend (which also includes her brothers birthday) with us in Maine before she flies back home to Colorado.

HOLY FLIGHT PLANS BATMAN!!! We're going. We are heading to the lights that the Jalberts have strung all over their mountain home for us, to the "real" tree that Donna and Mark will get this year for the family gathering, to the mountains that make my heart soar whenever I get to gaze upon that big sky and those 14,000 foot snow capped peaks and Jim is getting out of Dodge - something he hasn't done in over a year and he has been itching to GO!

This feels so healing for both of us.

One of the things that attracted me to Jim from the very first time I met him was his thirst for life. His ability to grab life by it's tail and just hang on for the ride. His incredible playfulness and big kid attitude to living. All of you on this site know this Jim too and this may be what attracted you to him as well. I keep telling Jim that even now, with life so different and all it's extreme challenges (yes, this is a nice way of putting it) we still need to grab that tail and hang on for the ride! We need to live life to it's fullest - especially now! And this trip to the mountains feels like the first step to reclaiming this part that we both have lost over this past year.

We are still waiting to hear from Dana Farber in scheduling an MRI down there with them. This MRI will be the first step in determining if that tumor is changing and if we can even be considered for the XL184 trial. We're hoping the MRI can be scheduled for the week we get back from CO but who knows.

I shall keep you all posted regarding this.

Loving you all back,

Mary

Who are we, really?

posted by Mary Lello, Thursday, December 3, 2009, 5:00 AM

Recently I've been doing some work around my own healing with a wonderful friend who is a Shaman. I discovered that I seem to be finding my "freedom" by leaving my body and soaring around while sleeping. For many of you this may sound a) astounding, b) highly unlikely or c) yup, that's Mary.

Regardless of your visceral reaction to this concept mine was "cool". From the time I can remember I use to leave my body. As a little girl I knew at a very young age that this body was simply a house, that the "me" inside was different from the "me" that the rest of the world could see. I would sit and stare at my hands and slowly move one finger, amazed at the fact that "I" could make that little finger move like that. Or I would think about my name Mary Lello and just laugh at the fact that this is what this house is called and "I" will respond to it. And many times when I would do this meditation I would enter a trance and then POOF I was in the corner of my bedroom looking down on my body that was still sitting there staring at my little finger. This never scared me but I knew it probably wasn't normal. At some point I would realize I was suddenly back in my shell because I was staring at that little finger again.

Somehow I always knew I was much bigger then this body, that there was a Spirit housed inside this skin and bones and that due to the parents I have I look the way I do now.

So who are we really? I keep saying how Jim is "trapped inside" but is he? His brain is compromised but is that brain Jim? I guess I'm saying I don't believe his spirit is trapped inside because I seem to understand first hand how we can easily leave this shell and float around. And I see that wonderful spirit of his in his eyes and in that crooked, odd smile he has now and feel it in the incredible love that emanates from his being.

I have a friend who lost the love of her life, John, 5 years ago to cancer. The last 2 weeks of his life when there was nothing anyone could do for him she told me how she would sleep on a pad beside him at night. One early morning she woke up because she had heard him call her name and there he was, a face in the end of the arm chair that she was looking at. As weird as that image is she suddenly realized that John was all around her and that when he died and leaves that body he would still be all around her. And she still feels him there with her, 5 years later. She feels him in the wind, and can see his face in the stars. How wonderful is that?

Who are we really? Am I this aging woman who freaks because she's starting to get jowls or that "estrogen pot" that appears around 50 years of age? This shell, showing signs of gravity and aging. Is THIS "me"? Or am I the ageless spirit inside that can't believe this body is going through all these changes now because I really don't feel older, just wiser.

I'm having a hard time talking philosophy all by myself here and I'm probably going to start really rambling, and maybe drooling too, but these are the thoughts running around in my head on this incredibly dark and storming morning.

My friend, Betsy, died over the weekend. She has been released from her shell. She is in the wind now, in the rain that beats on my window this morning, in my thoughts and my memories. She is and will always be a part of who I am because she touched my life for a few short years.

"Heard it in the wind last night, it sounded like applause ..."

Joni Mitchell, For the Roses

Loving you all back,

Mary