Riding into the sunset

posted by Mary Lello, Thursday, January 29, 2009, 9:54 PM

Every one is telling me how strong I am. I'm not so strong. If anything I feel like I"m having more melt downs then normal lately. Not the tearful kind - though those do happen too - but more of the rageful kind where I have to go throw something and want to scream and yell kind. This morning I went down cellar and threw laundry. You know that feeling where you just can't contain the anger and you need to really smash something? You throw that something as hard as you can and it .... floats ... at least if that something thrown is laundry. Such a let down! But it still worked. It allowed me to release a bit of frustration at all this. To release the feeling that all I DO is take care of others - be it at work or at home.

And it's not that I need to be taken care of. O.K., maybe I do but so many people are offering this and I just don't know what it is that I even need right now! I just know that I can't always be the one to "buck up", to not show how exhausted I feel too, to keep it all together so that no one else around me will fall apart.

Funny thing about caring for your loved one. You don't ever get a day off. I've lost all that independence and spontaneity that I use to take for granted. And because I am married to a man who always understood how much freedom I need he always allowed me to go and do whatever it was that I needed or wanted to do with or without him. And because I married my best friend often times those things I wanted to do were WITH him. But not always, and the best part is this was o.k too.

But Jim and I don't have this kind of freedom now. Jim was told today by PT Betsy that he can NOT just get up and walk to the next room, he HAS to call and ask for help because if he falls and hits his head right now it could be fatal. FATAL!!! So as I moan and groan about the loss of freedom my man - who was a competitive cyclist, who traveled the world to remote and wonderful places, who was so strong and independent - needs to call for help in order to walk from one room to the next. Not an easy thing to ask of this man - but he'll do it.

And although I might not be feeling so strong I think Jim is the strongest person I know right now. As tired and sick as he feels at times he can still laugh at himself, he can talk about being "mindful" and he can still look me right in the eye and ask "how are YOU doing?" and he wants an honest answer from me.

Tomorrow we head to Lexington to see the naturopath. We're both pretty excited about this as this feels like it couples with all the great work Jerry Sanders is doing. As Jerry said, the western medicine is addressing the tumor and the cancer but we can't lose touch with how we all can heal Jim . How we, as his loving community, can address the "health" of Jim's body and brain. We can nourish him with love and focus on all that is healthy in Jim while the western world focuses on all that is not. And the naturopath may add supplements and diet to starve cancer cells. We are coming at this from many different directions. And it feels right to both of us.

We have a great group of folks traveling with us too. Todd Valentine, once again, is our driver. Our good friend, Leanne Bard, is joining us as she has a real interest in understanding diet and supplements. Leo Shapiro is joining us in Georgetown as well as meeting up with Bob Morrison once in Lexington - both from Jim's sangha connection in Boston. In addition, and I know this means the world to Jim, we will meet up with Llama Palmo in Arlington after the doctors appointment.

And from this group of people Jim will gather strength. And this will help me to feel better too.

This weekend I am going to go outside and play with my friend and adventurous gal-pal MaryMargaret - who means the world to me, who has helped me weather this storm in more ways then I can count, who listens when I'm feeling so very weak and can't find anything better to smash then a pair of dirty wool socks and who will insist that we get out and run or ski. Because she also knows this is where I draw my strength from. This is where I can find a good breath and find my strength again.

I too am an endurance athlete and I will buck-up and ride this damn storm with Jim into the sunset ....

• ... but may it be many more then any predictions we've been given!

Hi Ho Silver, AWAY!!!

Mary

Good day

posted by Mary Lello, Wednesday, January 28, 2009, 7:45 AM

Another good day yesterday. Jim went to the doctors and they were all very happy with how well he was doing compared with how they saw him in the hospital. Something is working and we are all very glad about this. Besides, Jim has started to say "I'm going to beat this thing. I'm going to beat this cancer" .... this is good.

He was exhausted last night but he didn't nap much all day and he went to his meditation group at 6:00 and didn't get home until 7:00. He was very tired when he got home but also very happy to have gone and to have lasted for the entire hour. He's doing good. As good as we could hope at this point.

I'm freaking out a little bit because Stacie leaves Sunday morning. I'm getting hit with that same reality that came when Donna was going to leave us. Stacie is feeling ready to go now, a week ago she wasn't. And she told me she realizes how exhausted she is after being here for a month. Yup. And she gets to go home .... and I'm faced with this reality again and it hits me pretty hard! I AM home. And this is what it is! So every new independence that Jim conquers is very important to both of us. Very important! This is it folks. We're in for the long haul!

WIth that said I am overwhelmed by the response from all of you to help us out. Stacie, MM and Leanne kept telling me how amazing the folks waiting in the wings is - and everyone wants to help. Roseanne (Greg's wife) arrives on Sat. from Colorado and I have Greg and Roseanne here for one more week. Then we are flying solo - so if you are signed up to help us we WILL need you. I WILL NEED YOU!! And I so appreciate this community. I can't tell you how much we appreciate this community!! Jim will tell the different doctors that they have no idea what kind of support we have. And they say "you're very lucky" .... YUP, very lucky!

Today Rick Smith came to put banisters up for us on the stairways - PHEW, major thing for us and Rick did this so fast and they are so sturdy. Thank you! But Rick was saying what a great guy Greg was .... as Rick was standing in the kitchen offering us HIS greatness! ... and I said 'yeah, well ALL our friends are really great!" And you are!!

With the snow falling this morning Todd Valentine has offered to take us to radiation today as he drives a TANK. I find myself thinking about some statistics I heard. 98% of people who hit a patch of ice while driving say "SHIT" just before they go into the ditch. The other 2% are from Maine and they say "Hold my beer and watch this!"

Drive safely out there today. And again, we thank you with all our heart for your loving support that comes to us in so many different ways.

Loving you all back,

Mary

Living strong

posted by Mary Lello, Monday, January 26, 2009, 5:29 AM

I'm a Lance Armstrong fan again. He lost me a bit as he started to become his old egotistical self after retiring. But I'm a fan again. I don't care that he's getting back on his bike and I'm not convinced it's just for cancer. But I did get his booklet for people with cancer who are in the throws of this struggle. It's incredibly comprehensive and a wonderful resource. I'm glad to have it and glad his foundation is out there trying to find a cure. I'm wearing a yellow bracelet again too.

Some friends have told me not to ask "why". And honestly, I have not gone there, not once. I don't believe there is an answer to this question. Or if there is then it's on a bigger scale then my little pea brain could ever comprehend. Why did Lance get cancer? Why did he survive? Is the big picture because Lance can now give this booklet to me or ride his bike for cancer or so I can turn to Jim and say "you WILL be my Lance Armstrong and beat this thing!" ? I sure don't have a clue.

We had a good weekend. Jim was really steady on his feet yesterday, remembered it was Sunday and asked for the N.Y. TImes and sat reading it. He had a good appetite too. David, Greg and Stacie took Jim to the Portland Museum of Art so he could see the photo exhibit that is up now. David arranged for a wheel chair for Jim, which was good. They had a great time and Jim really enjoyed just getting out of the house and going somewhere besides to radiation or the hospital!

Me? I chose not to go but went for a xc ski and ran some errands instead! It felt so good to be able to just go into town and do stupid mundane things that drive most people crazy. Never thought I'd say running errands was so wonderful!

And Sat. night Stacie and I went over to a friends house and had dinner and some drinks with a few gals. While we were doing the 'girls night out thang' Jim was doing the 'boys night in' as several guys came over to sit with Greg and Jim and eat pizza. One of these men told me "I can't remember when I last got together with some guys to do nothing but to just be together. It was really nice". Makes you want to you smile doesn't it?

There are still some challenges though. The kind I wouldn't dream of posting here as they would embaress Jim. The kind that has me worry that the dots aren't connecting and worry that they may not connect again. But then I hear success stories of people who have survived this very thing and they are driving again and living fairly normal lives. I don't know if you ever live the SAME life after cancer kisses you and your death stands to your left ready to touch you. But this might be a huge gift too, to NOT live your life as you did before but to truly LIVE it.

WHY don't we enjoy running mundane errands? WHY don't we gather with friends for no other reason then to simply sit and be together. WHY don't we appreciate our good health when we have it? WHY don't we live each day as if it was our last?

Sending all of you so much gratitude for your love and generous beings and surrounding Jim with this community.

Loving you all back,

Mary

Home again

posted by Mary Lello, Friday, January 23, 2009, 9:47 PM

We did it. We made an executive decision and brought Jim home. I think the fact that we have Greg here helped Dr. Weisburg agree to let Jim come home today. PT, OT were all saying he really is still too unstable and a 'high risk" for falling - but we told them there are 2 people here with him at all times and ..... ta da ... we have GREG!!

So they agreed. And we're home. And the challenges still seem huge but at least Jim is more comfortable and we all can just sleep in tomorrow if we need to.

And it feels so good.

For some reason I got thinking about the Stones song "You can't always get what you want". Certainly I didn't want this. Jim didn't want this. No one who has had to face this biological phenomena and try and beat it or anyone who has had to watch another lose the fight or become a caretaker for a loved one and go through this with them WANTS this!

But there is that other line that has always struck me as pretty powerful - and I was thinking about it today and feeling this again ... "but if you try sometimes, you get what you need". And I do feel this. I do feel we are getting what we need at times through all this, whether it's a book of poetry from a dear friend, another friend bringing a carton of ice cream for Jim at this time (it's sweet, cold and slides down easy) girlfriends organizing a night for Stacie and I to just gather and relax for a few hours, a good laugh with a few friends or an incredibly wonderful insurance broker who is helping me wade through the jungle of insurance and offering me the best advise possible - and with compassion and understanding because she too has been touched by cancer.

So without even trying, we are getting what we need. Sure I want a new brain for Jim. I want that he heals and all is perfect on the other side of this again. I want to ask that our lives not get twisted and changed so drastically. But, you can't always get what you want. So we are slowly coming to accept where we are right now. To accept that this is what it is. To begin to fight the fight needed and hope that tomorrow we might have more energy to clean the kitchen or organize a small portion of the office desk to get outside and walk or run.

And we will have a new awareness around getting what it is we need. No matter how basic or how simple or how profound (and so many of you are offering PROFOUND help in giving us things that we need!) we have a new sense of gratitude now.

"You can't always get what you want ..... but if you try sometimes, you just might find, you get what you need".

Good night,

Mary

Money can't buy you LOVE

posted by Mary Lello, Thursday, January 22, 2009, 8:09 PM

The subject is from a Beetles Song. So I will let it play through my mind as I write this.

Another day in the hospital. They are truly uneventful. Truly not connected with any real world time. Truly not connected with any natural happenings - what's the weather? Who knows!! But the people there are very kind and the ginger ale is free and Jim is comfortable and well cared for so that's all that is important right now.

But I'm bringing him home tomorrow. This is MY bottom line. He comes home. Today I told him that maybe he won't be able to do the stairs as well - so he stays in the 'day bed' and we use the 3/4 bath downstairs for him to shave and do a sponge bath. Anything is better then staying in the hospital. And he agreed to this! Yahoo!

The chemo and radiation is already taking it's toll on him after only 2 days of treatments. He shows signs of pain but can't label where the pain is - 'my whole body I think' - and his appetite has gone from steroid voracious to just shovel the stuff in because I don't want to lose more weight type of eating. No gourmet dinners for awhile I guess!

BUT, he was very much Jim this morning when I got there at 7:30 a.m. His eyes held that look that is just pure Jim. And he was more coherent today. Balance still is off but it's not horrible. I think we could live with it here at home. This is good.

I went out with friends to the Falmouth Tavern tonight - Thursday in this household has always been "Tavern Night" so it was fun for me to go there and feel somewhat normal. Good laughs, wine and grub. All I need right now. My sister, Karmo Sanders, joined us tonight and she kept us all laughing . I'm proud as shit of my Blah blah sister who is also know in some circles as the "Mardens Lady". Yup, THAT lady. The waiter recognized her and it always just cracks me up!! But she has created such a wonderful character that folks in Maine can identify with - and do!! - so what the hell. She's a star.

The other gift at the tavern for me was the fact that so many people from my dentist office were there. I truly do not believe in coincidence and tonight these people being there was yet another life saver in many ways for me. I was able to feel such intense love from this whole office - who love Jim and who I have a professional (which is also very personal) connection with. It just felt right that I could see them, hug some of them and perhaps share this website if they choose to join us.

Damn, this is an astounding community! The gifts keep coming in such a huge spiritual way that I am brought to my knees with it ...and to tears.

I try to keep Jim up to date on all this but right now he really can't take it all in. But what he can take in brings tears to his eyes. He is such a loving human being and he feels so deeply when someone else connects with him. So PLEASE understand how important YOUR connection is. Truly. He feels your love and this is so important for his healing right now. Because he is still JIM DANIELS, who reaches out to and connects with and just loves others so deeply.

And we all love him so deeply back.

Isn't this what it is all about anyway? I mean really? Rock bottom basics? Yeah, it just all boils down to this and all the other daily shit is just that ... daily shit ... but deep down we all know that it is LOVE that is our true essence.

LOVING you all back , truly and deeply,

Mary

Hospital Days

posted by Mary Lello, Wednesday, January 21, 2009, 4:32 PM

Why is it hospitals leave you feeling like you just traveled to Thailand and spent countless hours in airport terminals and now have jet lag? And I never even left Portland?

Dr. Weisburg said that the MRI had not been fully done up - or whatever the term is - but a quick look at it seemed to show that the tumor has grown. Not surprising since we have not treated that tumor in any way, it's aggressive (yeah? SO ARE WE!!!) and it's been growing all these weeks. This growth is causing inflammation on the brain and thus all these horrible, scary symptoms. She agreed with all of us, that the brain is speaking pretty loud here and we can't wait for DF. As my sister Sara said "Dana Farber said they are minute to minute regarding a clinical test? Well JIM is minute to minute too. TIMES UP DF!!" For now anyway. There are other tests we can shoot for as Dr. Weisburg assured us, and we will. But right now we are treating this tumor.

Jim started his first pill of chemo today and seemed to handle it very well. No nausea. When they came to transport him to Scarborough for radiation I took my leave from that place. I'll call to see how he is but I probably won't go back tonight.

He might have to stay there until Friday if he doesn't improve with his balance and ability to walk. But he was better this afternoon then this morning and this morning he walked down the hall with a walker - far, far better then yesterday for sure!!!

We'd love to bring him home tomorrow but he must be safe so we'll see.

Did anyone else see the light tonight around 4:00? So beautiful as I left the city with that rose colored glow bouncing off the trees, the snow and Back Bay. And the crows were heading back to their roosts too. Such a beautiful evening.

The good with the bad ... yes.

Thank you all so much for all your thoughts, prayers and comments. I can't tell you how much it means to us.

Quick update

posted by Mary Lello, Wednesday, January 21, 2009, 5:39 AM

Jim was in good spirits last night - in fact he was hamming it up at times. He has lost coordination and strength though. The nurse said this is all signs of edema in the brain. From what? The tumor has grown again? WHAT????

They did an MRI last night so I guess we'll get some answers to my question. I'm heading in early and Dr. Weisburg will be by this morning. We will be starting radiation today. Not sure what all else goes on today.

Just need to say that Stacie did an amazing job yesterday making good decisions and staying vigilant. She was exhausted last night so will be sleeping in a little bit this morning. And thank God Greg was here! Jim almost fell down the stairs and Greg had to call David to ask him to come help get Jim to the car. Greg is a tall guy, for those who don't know him, and built like a brick shit house. If Greg had trouble helping Jim I can't imagine what would have happened if it was just Stacie here!

So, as Bob Morrison reminded me of the Buddhist story about counting your blessings, the good with the bad - a farmer buys a new horse - this is good, his son breaks his leg while riding the horse - this is bad, the army comes through the village and takes all able body boys to war but his son has a broken leg - this is good ..... So I am trying to look at our world this way now.

And there is some truth to it.

Loving you all back,

Mary

How the hell do I do this?

posted by Mary Lello, Tuesday, January 20, 2009, 3:36 PM

I mean that. How the hell do I do this? Stacie, Greg and David have taken Jim to the oncologist in Scarborough because Jim was really unsteady on his legs this afternoon. His headache, though better, is not gone and when Stacie called the RN they thought Jim should see the doctor.

And I sit at work. Trying to care for people who come to see me for very legitimate reasons but ..... I don't know how to stop working in order to be there at times like this. I don't know how the hell to keep this all together sometimes. We need my income now more then ever and I need to be where Jim is at times like this. I know, the good news, really good news, is Stacie is there and Greg is there and other friends (David) mobilized very fast and it's a great team.

BUT... they are putting JIm in the hospital again tonight and I sit here hobbled and feeling so damn frustrated and just ..... ARRRGGGHH!!

I just don't know how the hell to do this.

Dana Farber wasn't sure Jim could get into the clinical trail so we are going ahead with another MRI tomorrow as well as radiation and starting chemo tomorrow too. Sure seems like Jim's body is telling us to stop friggin' around and deal with this remaining tumor. So we're listening. There may be other clinical trials later that Jim will be able to get into.

Meanwhile, I have one more client and then I am flying ...FLYING to the hospital to see Jim tonight.

Do I work again tomorrow? Why isn't there a friggin' manual at times like this?

Mary

Greg's here

posted by Mary Lello, Monday, January 19, 2009, 6:47 PM

Greg Jalbert is here as you may know if you read his most recent message on the message board. He has jumped right in with the men's healing circle, snow blowing the driveway, clearing snow off the roofs, being 100% there for Jim AND making sure Stacie and I get to go off and do other things besides ... well, being here.

Today I went for a ski with my friends Alice, Mark and Art. Oh, and Ella, our best 4-legged friend. It was incredibly beautiful out there after about 14 inches of snow dumped on us yesterday. It has stayed cold enough so that snow is still light and powdery - vs. the heavy cement that usually happens on the Maine coast after a storm like this. It was rejuvenating to say the least. Still, I couldn't help feel how much I missed my best friend being out there too. Jim would have loved it today.

But Jim has been down with a headache - for 2 days now. When we saw Dr. W. on Friday she wasn't alarmed and told us "ibiprofin or the oxycodine if he needs it". It didn't help. Today we kept giving him the oxyc. at the correct hourly interval and it wasn't even touching his headache. We called the doctor. Left a message. They didn't call back. Stacie finally called them again hours later and told them we were taking Jim to the ER unless they told us different. She got the RN on the phone immediately (the Lioness was prowling!!) and they put in a subscription for more steroids to help reduce swelling. OH! Jim is still on the couch in severe pain but hopefully the meds will kick in by tomorrow. This is what bad days look like - and it has a huge effect on all of us!

I called Dana Farber today - after waiting since Thurs. to call them and ... THEY WERE CLOSED!! Holiday and all. There was a moment when I thought Stacie and I might chew through the wooden kitchen chair legs!!!!!! Frustrated? Oh man, you bet! So we call tomorrow. We find out what the near future holds maybe, we get tossed around some more in this sea of medical doctors, feeling on hold, no call backs, all kinds of pharmaceuticals I've never ever dealt with and .... grief, fear, and. now, vigilance.

Stacie said tonight - 'we have to become REAL Lionesses again now". And she's right. The pride is down one she-beast (we miss Donna horribly) but we have a King here with us now so I think once he gets filled in and knows his way around a bit better he will have a pretty loud roar. It's needed! We must advocate for ourselves and not just accept that this 'team of doctors" is going to do it for us. They don't.

Sleep you ask? HA!!! I have found a good stiff drink in the evenings helps though. Last year on one of the Blah-Blah Sisterhood weekends (for those who don't know, I have 3 sisters and a brother in my family. My sisters and I started to do long weekend get aways together 2 years ago at a lakeside camp. We now gather 2x/year. I termed us the Blah-Blah Sisterhood and it has stuck, because it's appropriate!) my sister Jayne made a drink with whiskey, gingerale and an orange wedge squeezed in. OMG, they are GOOD. While Donna was here she was making us Manhattans (yes, I've lost my drinking buddy as well) but one night I made her this whiskey ginger drink. Donna now calls this drink the "Lellopalooza", and this has stuck, because it's appropriate.

I've had my "meds" after a very up and down kind of day and I'm off to bed.

Thank you all for being out there. I know it's hard being in the wings but we honestly feel you there and it DOES buoy us up on days like this.

Loving you all back,

Mary

Healing's beyond the norms

posted by Mary Lello, Saturday, January 17, 2009, 5:55 AM

Jim had a bad day yesterday. He woke with a headache, his first real headache since this all began but certainly one of the major symptoms when something else is in your head besides your brain! He was very unsteady on his feet (but he still got into the shower without telling me and didn't use his chair. Drives me crazy but I understand his need to just do some things for himself) and spent a good part of the day on the couch. Luckily we already had an appointment scheduled with Dr. Weinburg's office to check his blood so we just made sure we could actually get some face time with her. She said Ibiprofin is fine and wasn't too concerned considering the big day Jim had yesterday in Boston and the fact that he might be dehydrated. More water!

I spoke with my friend from years ago Tina Clark. She and her husband, John, were very close friends of ours while we lived in Wickford, R.I. during the years Jim worked at the Providence Journal (with Mick Cochran who posts all those great pictures from so long ago). Four years ago I got a letter from Tina that was not the annual Christmas card but a letter informing us that John had died of cancer - I believe it was pancreatic but I'm not positive about that. We were shocked and my heart went out to Tina and her little girl Katrina at that time. Just this week I sent a

note to Tina informing her of where are lives are right now. She called me yesterday morning saying she had just gotten the note and finished reading it.

Even thinking of her calling me so quickly brings tears to my eyes. We have kept in touch with those x-mas letters over all these years (20 something) but have not really had much face time. And yesterday she talked with me and reached out to me like one of my best gal-pals. She was wise, honest and told me things that only someone else who has gone through all this truly understands. She had married her high school sweet heart, the love of her life and misses him horribly now as Katrina goes off to college this year and Tina has the house all to herself.

She still lives in Providence, R.I. and we hope to connect at times when I'm in Boston with Jim. Under such horrible circumstances seeing her again would be one of the many gifts that keep coming from all this. And there are SO MANY gifts from this, from so many of you, from all over the world (I think this as I read Marie's post from New Zealand!). It's astounding.

I had meant to write about the fact that we have made an appointment with Bob Morrison's naturopath, James Belanger - which we are really excited about and feeling really good about. Thank you for this tip Bob. And my brother in law, Jerry Sanders, still continues to come up with amazing information regarding how to heal Jim on deeper levels then just the cancer. Levels that have the potential of helping Jim transform not only the physical but the emotional and spiritual as well. Hey, I'm an energy healer and understand there are forces out there far, far greater then even Dr. Voldermort!

But somehow I got writing about Tina and how deeply she touched my heart and this is enough.

It's more then enough.

Loving you all back!

Mary

Dana Farber

posted by Mary Lello, Friday, January 16, 2009, 6:44 AM

Big day in Boston. Long day in Boston. But Dana Farber is amazing and all the people we met there were very kind and gentle. Our doctor, Dr. Wen wants to try and get Jim into a clinical test. There are several tests available right now but due to the fact that we live in Maine and logistics would make it hard to be at DF on a daily basis this seemed to narrow some of the tests down. Dr. Wen said he will know on Monday if a particular test he wants Jim to do before and during radiation will be open to Jim.

If we can get in, and I still need to read the literature but certainly we are leaning this way, then we will have to put off radiation for a week. We will have to get another MRI and we will have to go back down to DF next week for Jim to undergo their testings to make sure he fits the trial. Then he will take a drug while undergoing radiation 5 days/week here in Portland as well as taking the chemo-pill.

It's all very overwhelming right now. But it's also very positive and we feel lucky we are only 2 hours from DF at this point! If all works out we will be going down to DF one day per week for 10 weeks. How committed are you folks who have offered to do some driving? Perhaps if enough of us are willing to take one week each month to drive Jim down the burden wouldn't feel so big - and might even become an event to look forward to? Spending a day in Boston with Jim?

I put the cart before the horse. But there is now some scrambling to do to get the MRI, cancel radiation for next week (but keep it for the following week?) and get ourselves back down to Boston again next week. What a new world it is.

We also met with Bob Morrison, a good friend of Jim's. Bob was wonderful and shared with us his own story of beating the odds with cancer (not the same kind of cancer as Jim but still...) and the naturopath doctor he went to see, and continues to see, who seems to have specialized in working with cancer patients and recommending supplements and diet that will enhance any drugs being taken and fight the cancer cells from the wholistic front as well. This man is in Lexington so we may have to try and get down there as well in the very near future (next week also?)

I think it's sinking in that this is the world we now live in. That this is what we will confront everyday for the rest of our lives. And that the goal is to have a quality life and to keep pushing the odds a bit further, day by day, week by week, month by month.

Others have done it and are still doing it now. So this is uplifting and helps re-energize us to face all that we must in the next few weeks to just get on top of this cancer.

Loving you all back!

Mary

Another bluebird day

posted by Mary Lello, Wednesday, January 14, 2009, 12:47 PM

Anyone remember the song Zippety doodah from Disney's Song of the South? "Mr. Bluebirds on my shoulder .... zippety doodah zippety day, my oh my what a wonderful day". That is where I get the expression "a bluebird day" from. And I use it for these crisp startling blue sky and sea days.

I can't say I've had a real zippety doodah feeling of late but today does feel like a better day. Jim had a wonderful session with Jerry Sanders - who I feel is truly getting to the very beginning roots of this fear and anxiety as well as how to best allow it to release and change from bottled, or stuck, energy (fear) to pure excited energy that is positive and optimistic. Seems the fear must be released in order for it to transform into the Zippety doodah energy that will create that positive 'let's get this thing nailed and enjoy life" attitude that is so much more of the Jim I know and the attitude we all know is needed to best "hit this outa the park" - as Jayne said in a message earlier.

Jim rode his windtrainer for 20 minutes today. More excercise then I got! The last 5 minutes of that I could see he was tiring but still, 20 minutes of spinning is not that bad ... right Matthew Faulkner?! So it was a good morning.

I am at work now and giving Stacie a much needed acupuncture treatment for - guess what? - exhaustion, stiff neck, headaches and all the other things one might expect from a care giver!! Our friend Matthew Faulkner is home minding the store and possibly giving the Jimmy Thing (as he likes to call him) an outing on this beautiful blue day.

We still do not have the set schedule for radiology. Our first appointment is next wednesday at 7:45 ... A,M. !!! Can this doctor possibly do anything else to bug me?! I'm going to try and call and change that time if at all possible. In normal times 7:45 is not so hard. But these are not normal times and it's really hard (and very stressful for me) to try and get Jim up and out much before 9:00!!! And, I'm hoping, if we can get a more reasonable schedule that this will be the one that gets set, carved in stone, and we can FINALLY get riders and all set up and ready to swing into actilon.

And we are ready for this next step. We are ready to start radiation and chemo and get the treatments happening. And we also all are looking forward to going to Boston tomorrow. Todd Valentine is driving so I don't have to worry about finding my way around the "big city"! Thanks so much for this Todd. We'll be stopping at Trader Joe's too so if you need anything from there let me know! (I think I'm kidding on this one).

The food stuff coming continues to be wonderful. Thank you all so much!

And put some bluebird day energy out there for us!

Loving you back!!

Mary

Face your fears

posted by Mary Lello, Monday, January 12, 2009, 8:03 PM

We went and got Jim's staples out today. The wound has healed up fantastically and the staples were snipped out with no problem. A little creepy maybe but he said it didn't hurt ... much. We had hoped to see Dr. Wilson, the surgeon who removed the tumor, but that didn't happen today. There is a follow up visit scheduled for the first week in Feb. with him though.

Jim is struggling with fear and anxiety right now. It's hard for me to remain patient sometimes as I just want him to feel the fear but move on. And he just can't. Stacie thinks it may be the brain stem tumor, and I think she may be right. This is the anxiety, fear and 'spinning' that Jim has exhibited for the last 3-4 months - which would be about right for this tumor to have started growing and become a mass on the brain stem. As Jerry Sanders has pointed out, the brain stem is the primal brain - our fight or flight basics of our brain - and Jim's basic survival instincts are being compromised by this tumor that still sits there. Thus it may be very difficult for him to just move beyond his fears and the anxiety it creates is real and horrible to have to witness at times.

Or this is one theory anyway. One that makes a lot of sense to me since I have witnessed my man go from someone who could honestly 'let go' of something and move on easier and faster then most anyone I know to this man who is just spinning in a certain feeling or within a fear. It frustrates the hell out of me but in many ways it is getting me even more ready for the next step - radiation and chemo so we can get this thing reduced and then see if we can't get Jim back!

Granted there is a lot to be fearful of right now. But as I have expressed in other writings, those fears can be spoken about and acknowledged but they do us no good to just sit in and steep in them. This is the time when we must buck-up and get really positive and bring all that love and good juju stuff in from all of you and the universe in general. So I freak out a little when I see Jim getting so negative and fearful and just staying there for days.

But again, this all may change and soon once the conventional treatments begin and this other tumor gets reduced ..... and blasted to smitherenes (sp?)!!

This is one of my many prayers and wishes in this whole thing.

The sock monkey hats are good therapy. I might need to wear mine to bed tonight.

Mary

Hitting the wall

posted by Mary Lello, Sunday, January 11, 2009, 5:57 PM

I hit a wall today. Not much sleep last night. Too much to try and do today and no energy or motivation to do anything. Guess it's normal. I'm just not use to this kind of mental and physical exhaustion.

Jim however had a really good day. He went out and shoveled a little bit of snow off the deck and to the wood pile. He sat on his bike and rode it on the wind trainer for 15 minutes. He's chatting on the phone now with his friend Jane and he took a shower this morning in his new chair shower from Elizabeth E. That worked great!!!

Paula Jalbert dropped a hat off to Jim several days ago (and a big tray of peanut noodles that were yummy!). It has ear flaps, tassles and the top is the cutest little sock monkey. AND it has the effect of looking absolutely ridiculous on his head. Jim loves it. As a matter of fact he wore it to Dr. Voldemorts office and all the nurses and children in the hospital loved it. It's becoming a fad. All our friends want one. The 3 Lionesses have decided we should all have one. Our family doctor (Dr. Bruce Kenney) wants one. It's like the Jimmy sock monkey fan club or something!

Stacie is in charge of ordering so you can email her to ask what the heck they look like OR how to order one OR just look for them around town!!!

Jim gets his staples out tomorrow. Tues. he goes to get his mask created for the radiology and hopefully we will get our schedule for radiation then. I really am antsy to get the schedules that require Jim being driven to appts. set up so that we can organize drivers for days and times.

Our wonderful friends Greg and Roseanne Jalbert are coming from CO to help fill in where Donna has left off. Greg will arrive on Sat. 1/17 and be here for 2 weeks. Greg and Stacie will leave at about the same time the end of January but Roseanne (Greg's wife) will then come and stay with us for a week. At that time we should have a better feel for what Jim's needs are and what we need for people being here with him etc. But at least we have about 3 weeks covered with that.

During the week that Roseanne is here we may need to call on some of you with flexible schedules to be available to release Roseanne and/or me for a few hours on certain days.

So all of you 'in the wings' - and we feel like you are our wings as we do know and feel you there with all this support! - I hope to get a better idea of a schedule and our needs out to you by the end of this week or beginning of next week. Hopefully!

I'm off to bed or at least some mindless t.v.

Always and abundantly thank you,

Mary

New Realities

posted by Mary Lello, Thursday, January 8, 2009, 8:34 PM

I heard Jim had a great day today. I was at the office all day long so didn't get to witness it. Donna said Jim was just very much "Jim today", and David Puelle also said that Jim had changed so much from just 3 days ago. His OT session with Chris was also really good in that his ability to connect the dots of his short term memory came back very quickly after a few tests. Donna said his session with Jerry Sanders was also 'fantastic'.

Hoo-rah!

I got home around 7:00, just in time for dinner (fish tacos all made from scratch by Kathy Palmer. OMG, girl, they were absolutely fantastic!!!! If you ever want to move to a beach in Mexico and set up a stand that sells these tacos I'll go with you. There's money to be made in your dish and tan lines to be conquered!) So I saw Jim on the tired side of the day but it was so very good to hear how well he did today.

I'm hitting a new reality as we get closer to Saturday and Donna leaving us. I'm realizing that she will head back to CO and her life, as she should! But her life will be normal; no bed in the living room or chemo and radiation to drive to every day or 5 hundred little things to do for someone before taking your own shower. I know, all you mothers out there are laughing at that last line but this has not been my reality for all these years. I'm not complaining - I hope. I'm just hitting this wall a little hard and it scares me.

This IS our life now. Donna and Stacie have only come to stay in it for a short while. All of you who will be brought on board to help will only visit this life for whatever time you are needed and then you will go home to your 'normal' lives. THIS is now Jim and my life. It is far from "normal" and I must now find a new definition for what 'normal' is. As my friend Deb Estelle said "this news sucks".

I'm reminded of when I was a Senior in High School and I was into rock climbing with friends who were part of Tony Monterio's Mime Troup. I was in Harrison, Maine and climbing a pretty easy face - but it was one of my first climbs ever. I was on belay and climbing up. I got to a point where I could see no hand holds and could feel no foot holds. I couldn't move. And the longer I clung to the rock the more terrified and frozen with fear I became. I yelled to my friends at the top to pull me up. After some silence I heard my friend lean over the cliff and calmly yell down to me that they could not pull me up. I had to climb the rock by myself. I had to find the next hand hold and the next toe hold and I had to MOVE on my own! They could only keep me from falling, they could NOT just pull me up the face. I was on my own.

At the ripe age of 16 years old I learned what being on your own really meant. I started to cry. I started to shake and thought I might die. And then I realized how powerful an emotion this fear was. My body was shaking and I realized that all that energy was potential. That if I channeled that energy out of my head and into my body it would probably be very powerful. And I did this. I remember literally forcing my fear into my muscles, into my hands, arms and feet and I began to move. I began to climb that friggin' wall and I kept moving.

This is how I feel now, at the ripe age of 52. I cannot be paralyzed by this fear or this new reality. I have to put this fear into forward motion and I have to face this new reality of what Jim and my life is right now. For however long it takes him to beat this and to heal this is our challenge and I will push this fear into my legs to walk into the next doctors office or help Jim up the stairs and to bed. I will make this fear a positive energy within me and I will accept this life as it is, right now, with Jim still here beside me.

Because that's all that I really want anyway.

Tomorrow is a new climb.

Good night all, and we do know you are all out there keeping us on belay!

Mary

Lab Results

posted by Mary Lello, Wednesday, January 7, 2009, 1:31 PM

We discovered today that the oncology doctor, Dr. Tracy Weisburg, is absolutely fantastic as is her entire staff. They spoke about finding all kinds of ways to try and pay for the treatments we must get as well as putting us in touch with some of THE very best people in this field down at Dana Farber. And, I believe, Dr. Weisburg may be one of the best up here in Portland.

And she had bad news for us. The worst really. Jim's cancer is a grade 4 - which means it can grow back. Which means most of the people Dr. W. has ever worked with with this diagnosis has had the tumor come back. I will not write that it WILL grow back - but it can and has that history. Dr. W. says that our first course is to knock the remaining brain stem tumor and any remaining cells in there down and out with radiation and chemotherapy. Then we wait and see. If it doesn't grow back then she's done her job and we just stand watch. If it does grow back then we launch into plan B. Plan B offers more options now to brain tumor people then it ever has before. Even 18 mos. ago Dr. W. says things have changed drastically. In March there is a new treatment protocol that will be approved by the FDA and will be ready as a clinical trial for Jim to 'test' but which she has very high hopes for.

This woman is on our side. We all felt that today and I'm very honored to have her watching our back .... or brain ... as she instills confidence in her abilities as well as other treatments she will have ready and waiting in the wings for us.

So, now, we put our energy into stopping these cells. Stopping this growth. Stopping anything from taking root again and growing back .... and I'm not just talking about the use of chemo and radiation. We do have other means as well as these treatments!

And chemo is vastly different these days too. I'm remembering the chemo my best friend, Patty, went through 4 years ago as well as another dear friend, Kate, 5 years ago. The loss of hair, the horrible days of being so sick, the whole 'killing you with chemo in order for you to live' type of thing. Today Jim will take a pill at night so any nausea will just be slept through (as well as a little acupuncture for such condition to decrease the nausea) while he undergoes the radiation. The chemo and radiation will last 6 weeks with radiation daily 5 days/week and chemo pills every night at bedtime 7 days/week. Then a 4 week rest period and then we scan to see how we did.

Yes, we are scared. But I really liked what Dr. W. said to Jim today "we give you a little window of feeling sorry for yourself but once the treatments begin we want you on board, ready to fight and take control of this with a positive attitude". Yeah baby!!

And I've told Jim I will drag him down this path with my own positive intent and as clear a vision that I can muster ... but I would much rather have him walk beside me on this one.

We all know this man to be an endurance athlete who knows how to grit it out and dig real deep for any remaining reserve in order to make it to the finish line. Well, damn it, it times to really put that determination into play now! And I have never seen a more important finish line then one we are going to put our sights on.

We want and need you all on board with this one.

Imagine .....

Mary

Day's End

posted by Mary Lello, Tuesday, January 6, 2009, 7:52 PM

I wish that I could say today was a really good day, but it doesn't feel like that. Jim was really unsteady on his feet all day. He didn't sleep well last night so we are contributing his loss of coordination to being over-tired today. He was shaky too, and tonight at dinner he felt really cold.

I worry that I missed the signs of a brain tumor for so many months. Like I told the surgeon "who see's these symptoms and thinks "BRAIN TUMOR" except YOU?!" But now I'm a bit hypervigilant I think; waking to check on him in the middle of the night if his movement is less then normal, watching his ability to connect the dots during the day ... or not. And today was just not a great day. I notice it has a huge effect on me emotionally too. But then, I am over-tired also.

My collegue, friend, counselor, Kristine asked me today at the office if I have time for tears during my day. I had to stop and think. At the hospital it felt like it was all I had, all the time, the expression of tears regardless of the time. My days now? No, I do not have time for tears. How does one make time for this? I do not freely express them now either. My old stoic self. I feel them all the time, just under the surface, my eyes ache and I notice new lines in my face that are not smile lines any longer. Wow, and it's only been a week.

It's OK. No one person ever has all good days. It's OK that JIm had a bad day today. It scares the shit out of me with thoughts of slipping backward but that's so unfair to Jim. I need to learn to allow him some slack!

We meet with the oncology folks tomorrow and get the lab results. I know this is also on Jim's mind and he is very anxious about it. I will post what I know for all of you as soon as I can.

We do feel your love, from every single one of you.

Tonight I just need to absorb this, gratefully ... always

Mary

Morning Light

posted by Mary Lello, Tuesday, January 6, 2009, 7:23 AM

My best friend MaryMargaret (MM) helped to get me outside this morning. We went to the power lines off Tuttle Road - which, as strange as it sounds - are really very beautiful. The sun rises behind us as we walk/run out the power lines and today the tops of the trees were ignited with a rose colored glow that just makes me stop and, today, breathe.

I also love being out there after a dusting of snow so I can see what Ella is sniffing at so intently. Today there were deer tracks, fox, other human with dog and a ton of turkey (OK, I think the correct term is 'covey). In fact Ella flushed about 10 gigantic birds out of the woods. She is such a bird dog. Truth be told, she ran after one bird until she found some of their droppings and then thought this was far more interesting then the actual birds themselves - so the turkey's all got away safely. It always amazes me when a bird that big can actually lift off and fly away.

Jim is waking around 8:00 these mornings. He will do a little meditation before getting up. It's good to see him back to his Buddhist practice. Betsy, the PT gal, told us that meditating and other relaxing techniques are so important right now. "Stress feeds the tumor". And we'll be damned if we are going to give the tumor

any more of a fighting chance!

We are entering a new, or next, step. I go back to work today. Donna leaves on Saturday and it feels like our right arm is going to get cut off. But Stacie says, someone else will be there to step in and help. And I DO know this. I know there is that 'silent tribe' of people out there waiting to just be told how they can help. I'm just a little scared about how it will all work.

We still have not gotten the final lab results yet. Amazes me it takes this long but the holidays play a big part in this for sure. Jim has stopped asking about what it will mean. I think he is accepting the "be here now". But all of you know that Jim's real mantra was always "be THERE now!" ... it's hard but we're doing just OK.

We need to start taking notes of each and every improvement we see in JIm each day. This is good for him to see as benchmarks. Yesterday he was able to put the toothpaste on his toothbrush by himself. He's been shaving himself since getting home from the hospital. We may also need to start making goals - small ones! Not go for a trail run or get on his bike!! - but be able to read an entire section of the newspaper or write his own announcement/post on this page .... you get the drift.

So, I must get ready for work now. We shall keep you all posted on whatever we hear when we hear.

Thank you all, we love you!

Mary