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

Dana Farber

posted by Mary Lello, Wednesday, November 25, 2009, 12:00 PM

So many of you are writing and asking how it went at Dana Farber (DF) that I feel I should post a quick write up to fill everyone in. There is still a lot more information to gather but here is what we know so far.

Dr. Wen did not think the tumor looked that different. He did not think the swelling, if that is what it even is, is significant at all. But he wants to see Jim's entire MRI history in order to really make this call. Todd got on the phone before we were even in the car and had called the MRI library in Portland and requested the disc be made so we could pick it up today. He then called our mutual friend Don Harrington who is going to the library and then Fed Ex-ing the disc to Wen today for us (THANK YOU!!!) Wen will have the disc with the entire MRI history on Friday when he's back in the office. I hope to hear from him again on Monday.

Wen did say that the change in Jim's speech may be signs of the tumor changing even if we can't see this on the MRI image. Here's the Catch-22 of all this, if Jim's tumor is not worse then he is not eligible for any new drug trials. So the waiting game is to wait and see if the tumor gets worse or another one starts to grow and THEN we can try something new.

There is a possible trial available with a drug called XL184. This is another VEGF inhibitor type drug but with more of a punch. In that whole angiogenis process that brings more cells and blood supply to a tumor VEGF is a big contributor and what cancer seems to enslave. Avastin targets this VEGF and inhibits it. But now I've learned there are THREE factors called MET, RET and VEGF2. With cancerous tumors these 3-stooges seem to be mutations of the normal receptors. All 3 receptors are key to driving a tumors formation and growth. XL 184 targets all three of these receptors and has proven to not only inhibit the growth of a tumor but also to have tumor regression.

This is a phase II trial - which I like - and Dr. Wen said "if it was my wife sitting here in Jim's place this is what I would want her to be doing now". Alrighty then!

Jim needs to be off Avastin for 4 weeks before he can begin taking the pill of XL 184. IF the MRI's show Wen that Jim's tumor may be changing then we will go back to Boston on Tues. and Jim will undergo a series of tests to see if he's a good candidate for the trial. If he passes these tests then he will start the XL drug within 4 weeks and we will need to go to DF every 2 weeks for tests and monthly MRI's.

If he is not a candidate for this new drug then we will go back on Avastin and continue with this regime - possibly adding chemo if needed (grrrr!). Dr. Wen did say that we can always go back to using Avastin but that being on Avastin too long may limit us to being eligible for other drug trials down the road. THUS, if we can get into the trial now the timing would very good for us.

There will be more information coming, obviously! But both Jim and I are feeling DF went very well and we are hoping to get into this trial. I will keep you all posted.

Have a safe and happy Thanksgiving everyone,

Mary

Trouble, oh trouble can't you see ...

posted by Mary Lello, Sunday, November 22, 2009, 5:45 AM

The subject is from a Cat Stevens song and has been going through my head this weekend. It's been a very tough few days.

Yesterday I went to the Hospice where my friend, Betsy, has been moved to after spiraling very quickly down when cancer was found in her spinal fluid. They have stopped all treatments and she's on morphine to keep her comfortable. Two other NESA Bellas joined me there. Last summer, when we had all gathered to celebrate 14 years of friendship and love the host of the party, and owner of the cottage on the beach, Elaine, had ridiculous, bright, flamboyant sunglasses for everyone. We all wore these glasses all weekend. It gave us all a different perspective on our world ..... and something to laugh about whenever we looked at each other.

Elaine drove up from Massachusetts yesterday to join Julie and I at the Hospice. Betsy was lying on the bed with her loving partner, Ann. I crawled up on that bed and gave Betsy a gentle kiss on her forehead. She opened her eyes and said "oh,my, Mary". And then Elaine crawled up on bed with a pair of those wonderful bright yellow glasses on .... and we saw Betsy give a small, weak laugh. The 5 of us just hung out on the day-bed that Ann has been living on beside Betsy and saw Betsy smile a few more times. And then it was time to leave. And we all understand that we may not see our sweet Betsy again.

Prior to this visit I had spent my early morning hours researching treatment options for Glioblastomas so that I might be educated when we see Dr. Wen at DF on Tuesday. This is not light reading. And although there are new and advanced things coming out all the time and we may or may not find some of these at DF all readings will emphasize how fatal this diagnosis is. There is still no cure. There is no magic bullet. I don't know what I will die of but I do know what is going to take my Jim. And I know that he and I probably do not have the luxury of seeing each other with gray hair.

Trouble, oh trouble can't you see ....

I went to see the Yarmouth High School play, Little Shop of Horrors, that is directed by our good friend Betsy Puelle. As always Betsy is a magician with high school kids and this play may have been one of her finest. For a few hours I had a diversion from my thoughts. But on the ride home I thought of Anne on that day bed loving her Betsy to the very end ... and beyond.

Trouble, oh trouble can't you see ....

One of these days I will write about my family of 7 crows, who make me smile every morning when I go out to feed them. But not this morning. My heart is so incredibly heavy these days.

Loving you all back,

Mary

Dana Farber

posted by Mary Lello, Friday, November 20, 2009, 4:30 AM

We are going back down to Dana Farber on Tues. 11/24. Our ever faithful driver, Todd, is willing to drive us down even though he will turn around and go back down on Wed. to join his family for Thanksgiving. He tells me that I always fall asleep either going down or coming back so clearly it's better someone else drives for me. Yes, he's got a good point! And I'm very grateful he is so generous.

The last time we saw gentle Dr.Wen Jim was in a wheelchair, unable to stand to even step on a scale and unable to answer the simplest of questions. Dr. Wen will see a completely different Jim this time. But last time we were there Wen had advised that we get on Avastin. I had said to this kind doctor that if/when we come back down he will have something new for us ... and unspoken was the "something magical and powerful and hopeful that will save this man from this cancer'. And Dr. Wen had said "yes".

I honestly didn't think we'd be going back down so soon.

Everyone is telling me how this is a good thing, to get back down there, get into a trial if there is one, get lined up for the newest and bestest stuff .... so why am I so scared? Why does going down there feel like defeat? Feels like this f-ing tumor is winning?

I am scared this week. That is my truth. I rarely admit this to Jim. I will only honor and acknowledge his fears and tell him that I have fears too. I rarely label them. I don't want to be negative or fatalistic ..... but this week I'm getting hit with all kinds of realities and it IS scary.

And it's all coming at this one year mark - the holidays.

Damn.

I shall post what we learn at Dana Farber so stay tuned.

Have a wonderful and safe Thanksgiving everyone ... and DO be thankful for your loved ones, for your health, for the abundance in your life.

I too, shall give thanks with Jim at my table this year,

Mary

The Jim Daniels Fund

posted by James Jaffray, Tuesday, November 17, 2009, 10:15 AM

Several of Jim’s friends have written to ask if the Jim Daniels Fund is still active. It is very much so. So many people have done so much that I have hesitated to ask for more. But if you have read Mary’s recent postings, you know that money is tight.

The fund was established almost one year ago to help Mary and Jim with insurance deductibles, non-covered medical costs and living expenses due to Jim’s lost income. Your response has been overwhelming, and has allowed them to pay off two years of very high deductibles (Jim was diagnosed in late 2008) as well as provide some meaningful relief from non-covered medical expenses.

I know that Mary and Jim are very, very grateful to the hundreds of friends that have supported them through this ordeal.

Jim is holding his own, and just by doing so he is beating the odds. He and Mary are waiting patiently for new treatments to emerge. And one will. In the meantime, one way we can help is by trying to make their financial lives a little easier. If you have given in the past, thank you so very much. Please consider doing so again. If you have not made a donation and would like to, your gift would be most welcome.

Checks can be made out to The Jim Daniels Fund and sent to Jim Jaffray, PO Box 193, Blue Hill, ME 04614. Please note that all donations are treated as gifts and are not tax deductible.

"Jim-nasium"

posted by Mary Lello, Sunday, November 15, 2009, 4:45 AM

"Jim-nasium" is the term Jerry Sanders has come up with for our living room. To fill everyone in, Jerry along with our friend Steve, have turned our living room into a rehabilitation center now. The magic is if you walk into this living space you don't see it. There is a treadmill in one corner that folds up out of the way pretty nicely. Over this treadmill is a pulley system that attaches to a climbing harness that Jim wears while on the treadmill. This is arranged perfectly so that there is a tension on Jim that keeps him safe if he should trip while on the treadmill he won't actually fall down but rather sit dangling from his harness .

There is another set of hooks in another spot. A massage table is set up under these hooks. Jim lies on the table and we put his ankles through these padded stirrups that are attached to climbing ropes that hook into the hardware in the beams over the table. This allows a person to swing Jims' legs easily, to get his hips rocking and swinging in order to relax his whole pelvic girdle.

Jerry and Steve have made a video of all these different exercises so anyone can see how to do it with him. One of my favorites is the 'rowing' exercise. Jerry has Jim hold 2 longish, light weight, plastic bars - one in each hand - and Jerry holds the other end of these bars. Then Jerry starts a rowing motion with Jim to get his right arm moving .... and the 2 of them will sing "row, row, row your boat" in an exaggerated opera - very manly - style! Very fun!

Singing uses both sides of the brain so a person can sing when they can't talk. I witnessed this one day while Jim and I were out for a drive. He has been using "preservative language" which is a phrase or word that the brain seems to resort to when he can't find the word or phrase he REALLY means to say. For Jim that phrase is "how long...." This is NOT what he wants to say, nor is he always asking a question about time but it may be the only phrase that will come out - much to his frustration (and mine).

On this drive we took Jim was stuck on the "how long ..." phrase so I started to help him remember some other ways to start a question - "how old", "how many", "how much". With the "how much" I launched into that children's song "how much is that doggie in the window" ... and Jim started to sing it with me pronouncing all the words almost perfectly! WOW! So we tried another song "Jingle bells" .... WOW, WOW! It's true - he can sing close to perfect even when he can't speak. So I've told him he should just launch into his own little opera when he needs to say something!

I don't think it works this way though.

Some good news - as I feel we ALL need some of this! - I think Jim's speech is improving a little bit. There is still a huge struggle but he is NOT saying "how long.." nearly as much. Friday he looked at me and said "I want to talk to you" perfectly. It was a very emotional sentence because he and I really miss being able to talk with each other, but I was cheering with that perfect sentence being said! And at times he'll just talk ... I might not be able to understand what he said as his words are jibberish since his tongue isn't working so well but his mind is working in complete sentences and in his mind those words are THERE! I've told him, just talk, just go for it, who cares if I can't understand it? Just let it rip through your mind and connect to your tongue because eventually, someday soon, it's going to start coming out so that we all can understand you!

I think the steroids are doing their job is what I'm saying here. As much as I hate them - they are a good right now.

This gray morning I will go into the hospital to see my friend, to offer support to her with my love as it's all I can give her right now.

But it's enough,

Mary

Newest News

posted by Mary Lello, Saturday, November 14, 2009, 5:15 AM

Jim went for his biweekly Avastin infusion and we saw Dr. Weisburg. We got informed on what she suspects the swelling is that was seen in the MRI 2 weeks ago.

The tumor looks the same, no bigger, no smaller but the edema is all around the tumor. This could be cancer at the very cellular level. This tumor could be sending out tendrils and the swelling is the very first signs of this. All Dr. W. can offer us is to add chemo, CPT-11, in with the Avastin. She would rather have us go back down to Dana Farber and meet with Dr. Wen again and see what other options we might have.

She said that Jim is doing fantastic and has amazed all his doctors. She added "I know this doesn't all feel amazing to either of you, but from the medical stand point, JIm, you are amazing!" she added that Jim is young, very strong physically and if there is anything new out there that is being tested or that Dr. Wen may know about she wants Jim to get it. He's the perfect candidate.

She also wants the steroids increased from 2mg/day to 4mg/day to try and get the swelling down. She believes all the trouble with the speech is this swelling. It was our first small change in his symptoms - always a red flag.

Jim took all this really well. I'm in a bit of a funk. Dr. W. said this is NOT going backwards, it's forging ahead. She said the swelling might be the tumor disrupting the natural flow of spinal fluid in which case DF is the place to go to get a shunt put in to drain this. But I don't think this it what she believes is going on.

It feels like we are going backwards to me. It feels like the cancer is 'coming back' .... though it never really left. It feels like we are going back to Dana Farber in hopes that they can offer us something more. I'm not taking all this real well.

And of course I blame myself - we got lax on the diet because Jim really enjoys a beer and sweet potato fries with his burger at the Tavern. I've stopped the supplements because I can't afford the $800.00/month bill. I've started too many of my prayers with "&$%* YOU!" I know this is all irrational and it's nobody's fault ... but it's still hard not to feel I'm doing something wrong here.

OH, and there's more good news (yes, I'm being sarcastic) I found out that the fabulous offer that our PT office gave to us is actually DOUBLE what I thought it was. Oopsy. So now I have to go to them and tell them I can't afford the 3x/week and will have to cut PT down to 1x/week. A wonderful friend has offered to help me with this so we can go at least 2x/week. I'm still thinking about this offer as it's hard, always, to accept such gifts.(Our insurance will kick in again for this the first of the year, but our plan offers a very small amount of money for all therapies.)

In addition I have learned that one of my sweet NESA Bellas - a woman I went to acupuncture school with (NESA) and whom I have known for 13 years - is at Maine Medical Center now. Her breast cancer has metastasized to her brain and possibly her spinal fluid. She is basically riddled with it now after fighting for 8 years. They offer her more chemo, or to stop it all together in which case she has limited time left.

Can my heart take any more without breaking completely?

Yes, I'm in a funk for sure. BUT I will get in to see my friend on Sunday, I will make the appointment to go to Dana Farber, I will rally and smile and forge ahead because this is my life and there's no running away from it.

I'm not quite ready to start my prayers with "Dear God" though, sorry.

Loving you all back - because all this love is such a gift,

Mary

November

posted by Mary Lello, Thursday, November 5, 2009, 6:00 AM

November. Always such a stark month. This morning the air was alive with golden, dancing leaves as they were pulled from their branches by the November wind. The leafless branches look so bare now and click against each other in the cold air. I took a moment to watch the leaves falling, so many of them twisting and occasionally rising up and spinning on some unseen gust of warm air. They reminded me of little brown birds that flitter and swoop. Perhaps the bird is mimicking a falling leaf? One way to avoid a big hawk from barreling down and snatching you if you're mistaken for an Oak leaf falling.

Annie Dillard once wrote "If I'm a Maple Key falling at least I can twirl". I thought of this as I watched the Oak leaves twirl to the ground below. Perhaps I need to twirl just a bit more these days. Perhaps that is all that is being asked of me at times - to just let it go, release my hold and twirl.

I need a billowing skirt with at least 2 petticoats underneath it though.

We're coming up on 1 year as we enter the month of November. Last November Jim went out to stay with Stacie in California and would call me at night. I remember one night when he called, I was in bed as he had forgotten the 3-hour difference in time and he sounded so crazy. I tried to calm him down and before we hung up he sounded better. Then he forgot to disconnect his iPhone and I laid on my bed and listened to him in California crying and yelling at himself on some freeway while in the car.

Ah yes, the tumor had taken hold but we all thought he was headed for a nervous breakdown. If only that was all it had been.

November is such as stark month. The colors are draining from the trees, their branches lay gray and dormant against a gray sky. My crows are easier to see in their roosts, black shadows against all this pewter grayness. Cardinals stand out like strikingly beautiful red flags as they fly into the ever green rhododendrons, taking my breath away with this flash of color.

Red flags. I think I will always see sudden change in emotional behavior as a red flag from now on. Before I had said to our brain surgeon that 'nobody thinks of a brain tumor but YOU!' .... but I will forever think of a brain tumor from now on. I now flinch at a headache, another red flag, and worry if it doesn't go away with a simple pain killer. I sleep fitfully, always listening as best as a hearing impaired person can listen, with my body tense, even in sleep, and I wake frequently waiting for the clock to to show me an early morning hour that feels OK to crawl quietly out of bed - finally.

November is a stark month. All the brown leaves lying on brown grasses. Everything seems to be just waiting for the first snow fall to add a new sparkle to the landscape and a protective covering to the Earth and all those who hide within her for the winter months.

And what am I waiting for? A friend who enjoys the Sunday paper again, who is quick witted and able to make me laugh from deep within my soul. Who will ask me to get out in the dark morning and run the trails with him and I'll groan but I'll do it and feel so good once I'm out there and happy he asked me .... happy that he's still with me. I'm waiting for a new life, or our old life renewed.

Maybe it's time to just let go, to let be, to let it all just happen as it will. To stop waiting, to release my hold, to allow Life to step in, to unfold my tightly clenched being and dance in the wind, to ride the currents up and up and .... twirl.

This is my November,

Mary

"This is so hard"

posted by Mary Lello, Tuesday, November 3, 2009, 5:15 PM

These are Jim's words lately. When I look up from doing whatever at the breakfast table and he's hunched over and crying ... "this is so hard". I'm glad he can get this many words out right now but I so wish he could tell me more, say more, and this is what he is referring to as being so very hard.

I can't imagine what it must be like for him. I only know what it is like for me and it IS so hard. We have lost so much of our quality of life to this disease now. It's truly difficult to explain to someone who asks 'how are things going?". It's difficult for our closest friends - who see us daily or at least weekly - to understand the constant daily grind, patience, fortitude, strength, endurance, tears and the occasional laughter that goes on in this house so it is next to impossible to explain to someone we see infrequently.

This IS SO very hard.

And at least I can talk to people about it. I can look at a friend in the grocery store and with tears in my eyes tell her I'm just exhausted. At least I can get my thoughts out of my head and into the stream of consciousness. At least I can walk outside and throw things and yell a few good swear words. Well, actually, these are the few words that Jim CAN say that come out crystal clear! Which is very common with folks who have this kind of speech deficit. It's a really good thing!

This all is just so hard.

Jim got another MRI last Friday 10/30/09. Dr. Weisburg is out of the office for a few days this week but had told me to call and talk to her NP, Dawn, who could give us basic information on the MRI. Today Dawn left me a voice mail that said the tumor is stable but "there is some edema, which can happen". I'm not sure why this 'can happen' or what is causing it but I do know Jim needs to go back on 2 mg of steroids a day again. DAMN! For whatever reasons this feels like defeat for me, going BACK on steroids for edema in the brain. Haven't we been here before? I know 2 mgs is nothing and the edema didn't seem to raise huge red flags with the oncology office since it "can happen" but I'm red-flagging all over the place! And I worry how Jim may take this news as well.

This is so hard.

And all we have, in thin, frail fragments, is hope that it will only get easier.

I do need to add before closing that this morning I was leaving to go to work. Jim kept trying to say something and was getting really agitated and upset because he couldn't say it and he couldn't let it go. When this happens, that he can't let it go, I know it's important to him. So we went through our questions and my trying to understand what word he was saying and his getting more frustrated. I knew it was about today and ... VOTE! You want to go vote? YES! AH!!! So our friend, Rob, took JIm over so he could vote on the very important issue of equality of marriage for all in the state of Maine. I'm not surprised Jim remembered he had to vote today, he is Jim Daniels after all! But I'm so very proud of him for remembering to vote today!

Rob shared that Jim had a moment of panic before entering the High School and just looked at Rob. Rob told him "Jim I will be your eyes and your words in there ..." and Jim relaxed and went in and voted with Rob at his side.

Yup, those are the kind of friends we have around us!

This is so hard - but it is this kind of love and support that offers a softening to our difficult life right now.

Loving you all back,

Mary

A Love Song

posted by Mary Lello, Wednesday, October 28, 2009, 11:37 AM

I've had this song going through my head for over a week now.

I've sung it while running the beach, getting ready for work or just driving around. It's a John Denver song. I lived in Colorado when Denver was getting his name made and all us "cool ski bums" use to make fun of him. But now I appreciate his music and his poetry .... and he writes a damn good love song.

So this is for all of you who have lost someone you felt this way about, or those of you who love that person now, or those who hope to love like this some day. This is a love song for anyone who just connects with it, for no reason at all.

Annie's Song:

You fill up my senses, like a night in the forest.

Like a mountain in spring time, like a [run] in the rain.

Like a storm in the desert, like a sleepy blue ocean.

You fill up senses, come fill me again.

Come let me love you. Let me give my life to you.

Let me drown in your laughter. Let me die in your arms.

Let me lay down beside you. Let me always be with you.

Come let me love you, Come fill me again.

And of course, this is my song for Jim.

We get another MRI after the Avastin infusion this coming Friday 10/30/09. I shall let keep you all posted.

Just love,

Mary

3 steps forward, 5 steps back

posted by Mary Lello, Monday, October 19, 2009, 6:07 AM

Others who have survived cancer have told me it can feel like 3 steps forward and 5 steps back at times. Well, I feel we've taken those backward steps lately. All the jubilation of the bike ride and a necrotic tumor are fast fading. Jim's speech is declining. His words are very muddy now and very difficult to understand. He can not retrieve enough words to complete a simple sentence. He breaks down in tears of frustration and fear very easily. I break down in tears of frustration and fear with him. Life is good?

We went for our biweekly Avastin infusion last Friday (10/16) and saw Dr. Weisburg. She is very excited at how well Jim is doing. When I mentioned his speech she said, and I paraphrase here, that we are coming up on the 1 year mark which is beating all the odds for a glio victim (yup, little reality check there for me!) and she's so happy for Jim. Since he is "surviving" all this we may now be seeing the effects that radiation had on Jim's brain. Radiation kills the healthy cells as well as the cancerous cells. What we are witnessing in Jim may be the effects of killed brain cells in the area of speech and comprehension.

OK, this feels more like 20 steps back!

I know the brain can heal. I know the brain is elastic and capable of re-routing and re-growing and doing amazing things. I know that stroke victims have recovered fully from brain trauma that occurred in the language and speech areas of their brains. I also know "they" say it can take a long time. And this is where I lose it a bit. I can NOT focus on how long this may take. I can NOT look down that road at all. I'm willing to only buy into 'magic' and stake my heart to miracles and believing it will all happen faster than 'they' say.

Sometimes I miss Jim so much my entire being just aches.

But this morning the light is golden and reflecting off white hulled boats and every single sparkling, dew laden leaf. This morning I only need to make sure Jim looks out the window at this gorgeous morning when he gets out of bed. This morning I will help him take all the steps needed to make it through another day regardless which direction he goes.

Loving you all back,

Mary

Crystal Ball

posted by Mary Lello, Saturday, October 10, 2009, 5:13 AM

The bike ride is over now but so many folks still contact me and tell me how amazing it is to see the pictures and read the story. It was an amazing day and a wonderful goal that felt so huge and felt so good to accomplish.

But life didn't change here because of it.

I was speaking to a friend I ran into at the grocery store and was telling her that we still ride a huge roller coaster with small highs and very deep valleys. I also shared a thought I've been having lately - OK, it's a little far-fetched but it's a truth for me - what if an angel had come to me and said "Mary, Jim is going to get cancer when he is 58. It will be a life threatening cancer and one with no real cure. But you have a choice as to what kind of cancer he can have. What will it be?" My response? ANYTHING BUT BRAIN CANCER PLEASE!

I am not belittling other cancers - I've lost too many friends and family members to all kinds of cancers over the years to think any one is "better then" another - but brain cancer is so very difficult. It has taken my JIm and pushed him deep inside where every day I see him struggle to come out. It has taken away his ability to speak his thoughts - this from an extreme extrovert who always had a lot to say about so many things. It has made reading and writing impossible at this time. JIm is a writer and a day would not go by when he didn't read the paper or lay in bed at night and read a book. It has taken away all of his independence, a man who has traveled the world and to very remote places and now he can't drive himself to treatments or make a decision about what is best to eat for his cancer or even be here alone in the house. It has changed how he views the world when his world view use to be captured as beautiful moments on film for others to see.

Anything but brain cancer please.

But brain cancer is what we got and there is no crystal ball, no angel offering us a choice, no changing this story line. So everyday we greet another day, glad to have this new day together, and dig a little deeper into our reserves and set our intent in order to face the challenges this day may bring us. We try to celebrate the small improvements and to move forward with the set backs. We try to trust that we have the strength to do all this, again, for another day.

I'm hearing Bob Marley this morning singing "Cause every little thing is gonna be alright" .....

Loving you all,

Mary

MRI on Monday 9/7/2009

posted by Mary Lello, Thursday, September 10, 2009, 2:42 PM

We won't see the doctor until JIm's next Avastin infusion which is next Friday. So I called the office and asked that they give us a call when Weisburg had a chance to look at the MRI and just let us know what she knows. The voicemail from the office said that "the tumor looks stable with possible slight improvement". Weisburg admits she's not an expert at reading MRI's so she might not have talked with the MRI Techies yet. I feel there will be much more info when we see her next week.

This is good news. I'm assuming the "slight improvement" may just be a few more mm of shrinkage - which in the brain is BIG! The specialist at Danna Farber had told us that Avastin might not shrink the tumor but would stop it's growth. We have heard of folks with the same kind of tumor as Jim who are now tumor free with the Avastin - so the fact that this thing is shrinking at all is good news!

Of course - I want it the hell out of there. But it's not growing, no other tumors are coming back and things "look slightly improved".

We'll take it.

Loving you all back,

Mary

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