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