" You really would like...."

posted by Mary Lello, Thursday, June 11, 2009, 8:37 PM

I'm realizing that there have been a couple times when Jim has turned to me in our 25+ years together and said "you really need to meet ___ as I think you would really like them". He did this after meeting Kate Mahoney. It took me too long to actually meet her and then she and I were joined at the hip. I fell deeply and hopelessly in love with that woman and shall always feel that for her. And Jim said this to me many years ago after working with Hannah Holmes. Tonight we met Hannah and her hubby John (who has become my on line drug information guy - he's a pharmacist - and an angel for me in many ways) at the local tavern for our weekly Tavern Night. I've known Hannah from a distance and I've known that Jim thinks the world of her but tonight I fell in love with her too. Seriously, there are not many people who can look at Jim and simply and eloquently reach over and wipe his chin because his dinner is dribbling down his chin and he just can't feel that on the right side. No big fanfare, no big deal, just done with love. And many folks say they understand but unless you've lived this I'm not convinced ... and Hannah convinced me tonight. The love she has for Jim and he for she is just there .... deeply and truly and it is just so wonderful to be in an aura like that.

I don't want to ring the bell of one when there are so many of you who light up JIm's life, who are here for him daily and do so much because of your love for him. But tonight I was just touched to my very soul. Tonight I feel that I made new friends and this is always very, very special. And Jim has always been able to do this so deeply, so immediately. He has felt this in a heart beat of a moment and just KNOWN that this person is now family, is now a heart string and pulse to his core. Me? I tend to be the "stoic New Englander" and have to feel folks out first, not jump too fast, not accept too quickly .... but with Jim's disease I think I am feeling through Jim's heart and senses and the heart strings vibrate all on their own. A harmonic either hums true or it doesn't. This is a pretty wonderful way to go through life ...'feels good, feels right ... HUMMMM'!!! Why did it take this disease for me to figure this out? Damn.

So, how is Jim doing? We get another MRI next week. I asked Weisburg if we could do this sooner versus later because I have concerns. Not huge but I'm not seeing the progress we were having in the beginning. I'm seeing a bit of regression actually - moving is a bit more difficult, word processing and retrieval comes harder, fatigue is big. Todd had said to me that slow improvement is good - it means healing. OK, this makes good sense and I'll take this but still I want to know what is going on in that skull of his. I want to know that the tumor is shrinking or staying the same and dormant at this time. I understand that this is a cancer that WANTS to come back, WILL come back if we can't be several steps ahead of it. Our vigilance must keep on keeping on here and so I keep researching stuff that's out there and keep asking questions and just keep my focus on moving forward ... ever forward .... moving towards what feels good.

Tavern Night felt really good tonight. A gathering of friends, a booth that kept filling up as people joined us. Hell, Jim and I have always begun a dinner party with 2 other people that soon blossomed into 6, 8, 10 guests.... friends.... love ones. And introductions to others where we say " you really must meet so-and-so as you would really like them ....."

May the circles be unbroken.

May this gift of life, connections, and those heart humming strings guide us far more then the ego and the mind.

Oh, by the way, you really would like ....

With an open heart,

Mary

WIshful thinking

posted by Mary Lello, Monday, June 8, 2009, 5:53 AM

We started Physical Therapy (PT) last week and find ourselves very excited about the possible outcome this may help us achieve. It would be really wonderful if Jim could just move easier without the fear of falling down and not have me hovering over him all the time. I know it wears on him, and it wears on me too. They haven't given any prognosis yet nor have they told us how long we need to think about doing this - questions I need to remember to ask actually - so I'm hoping this isn't just all wishful thinking. But then again, what's wrong with that? If that's where we set our sights, looking a foot over the bar we must leap over, sometimes that unattainalbe height is achieved simply because you saw in your minds eye a higher bar then what is actually there. So perhaps we will envision a higher bar - and shoot for the moon.

Jim's congnitive skills continue to improve. He still loses his train of thought but overall his vocabulary is much better and he is far more alert and he understands all that goes on around him. When he's really tired I feel I'm not really seeing the man I've known for almost 30 years, he's just not himself. Brain tumors suck. But in the mornings when he is real fresh I see Jim Daniels and this helps my heart.

People told me we had a long, hard road ahead of us. I'm just glad we're finally traveling down it instead of constantly stopping along the way to deal with a crisis. And it does feel like we are now moving forward. I admit that, for me, it feels really slow at times. I still hit walls and feel emotionally and physically drained from this constant 24/7 vigilance. It's good to hear the care takers who come weekly tell me of the changes they see in Jim on that weekly basis because sometimes on the daily basis we miss actually seeing that change.

The day bed is gone now! My friends Betsy and Margo came over one Sunday afternoon to help me arrange my living room. What a team these 2 were, moving rugs, furniture, vaccuming behind things as they got moved for the first time in years (yup, yuck!!). I feel like I've got my house back again for the first time in 5 months. It's wonderful.

And summer feels like it's actually going to make it to Maine again. Blue bird days, the garden is alive and green, song birds are flittering every where as they come in to eat the bugs in my yard. We've got dear friends coming the end of June from California and Donna is returning with Mark (her hubby) mid July for 10 days. The bay has sailboats on moorings again and our grill has been fired up several times already. Just need to stock up on the Margarita fixings now!

Summer time and the living is easy .... and it is more often then not these days. And we are looking at that full moon this week and seeing where we are putting our sights. Not "wishfully thinking" at all ... BELIEVING!

Keep sending that love on the airwaves, keep emailing us your thoughts and wishes, keep your sights on the moon, because you can never feel too much love.

And know that we send our love right back to you,

Mary

Jim

posted by Mary Lello, Wednesday, May 27, 2009, 12:22 PM

Yup, big surprise on this one, JIM is the subject! And Jim is doing really well these days. We just saw Weisburg this morning before Jim's 3rd Avastin infusion and she is elated at how well he is doing. She hadn't said this before - which is part of her magic, she keeps a very straight face during bad situations - but today she said that the slide backwards we were in a few short weeks ago was pretty scarey and she wasn't sure we would be sitting here today doing as well as Jim is doing right now. The Avastin is working because Jim is down to only 2 mgs of steroids and if the Avastin wasn't working we would not be able to go off the steriods.

Well, WHOO HOO!!!!! I'm loving these infusion days!

Jim got a brace for his drop foot yesterday and that has changed his world too. Now that foot doesn't trip him up quite so much as the brace holds it straight and sturdy so it can't go all twisty, crooked on him. He got home with that brace on and immediately took off with our friend Rob for a half hour walk. Can't hold this man down when he's ready to rock and roll! We are going to start getting PT for him too. I think a good physical therapist will be able to address these right sided issues and help him begin to gain back the muscles that he's lost and start to move a little better.

On another note, last night, after work, I went to a potluck dinner that was put on in celebration of our first year of the Portland Veterans Acupuncture Clinic (PVAC). We opened this free clinic to any and all veterans exactly one year ago yesterday. I have not been able to be at this clinic since Dec. Many of the veterans seemed to know why I haven't been there but the guys I sat with asked me where I've been. I told them and these big burly men just melted. They all said how they have missed having me at the clinic, how they will hold Jim and I in their prayers and they hope I can come back soon. Made my heart feel really good.

One guy came up to me and gave me a little hug and said "Mary, we've really missed you" I stared at him and thought "he must be new, I don't remember him".... and then he mentioned that he had shaved his beard!! He had not shaved in 30 something years (yup, Vietnam Vet) but that the whole acupuncture clinic has helped him see things so differently in his life that he wanted to shave - and cut his hair - and I have to say this little ZZ Top looking guy is VERY handsome now!!! These stories of how this clinic is changing lives go on and on, it amazing, truly. And I really miss working this clinic on Tuesday nights. It's becoming such a wonderful community of healers coming together in a cooperative environment and offering acupuncture to veterans so they can get their life back - and these vets now say that Tues. nights are sacred, its PVAC night and they wouldn't miss it for the world! They are getting their lives back with the loving care of Portland acupuncturists ....

• .. and Jim is getting his life back too with the loving care of this community and AVASTIN!! We both are looking forward to some independence at some point in our future too.

Love,

Mary

PS - there will be a fundraiser at FLatbreads in July to benefit PVAC. I've got to get the exact date but I hope those of you in the area will think to go eat a great pizza that night. A percentage of all pizza's sold (including take out) on the benefit night will go straight to funding the veterans clinic. Please think of joining us. I'll post the date when I know it and probably Jim and I will be there too.

Flying Solo, again

posted by Mary Lello, Wednesday, May 20, 2009, 5:48 AM

Greg left yesterday. Donna left Monday. Stacie left last Saturday. It was a wonderful break to have everyone here and to have Donna and Stacie here 24/7. It meant I could look up from my coffee cup when we heard Jim beginning to get up and Donna would say "I got him", and I could sit still for yet another minute or two. Or that I could say I was going for a bike ride and then just go, no asking 3 or 4 different people if they might be available, no asking how long they might be able to be here. I'd just go and not worry about when I would get home.

So I'm realizing that what took 3 people for 1 week to do I've been doing pretty much on my own for months now. And now that I realize just how daunting that is I'm finding it harder to get back to the flying solo again. The best part might be that Jim is getting more cognitive skills again and I was actually able to talk to him about my feelings and he heard it all and understood and even offered me some reassurance that we'd be OK. And we will be OK. And we do have all the wonderful care takers who are still coming every week to be here so that I can go to work and not worry about a thing. This is pretty amazing and we so appreciate this support! And we have all of you 'in the wings' sending so much light and love, also very amazing.

Jim is improving every day. Yesterday he reached up with that gimpy right hand and turned the bathroom light off. We both looked at each other and cheered. He's been trying to do that for weeks now. He's walking much better every day and sometimes, when he's really stable, I let him walk in the house without feeling the need to 'spot' him. Fatigue is another whole animal still so getting rest throughout the day is very important.

We both get impatient for a more normal life. One where we both have independence. As tired as I feel at times to have to be at Jim's side for so much of his daily routine he feels just as tired about having me there! And as much as I long for independence to be able to leave Jim by himself, I also feel like a parent might when that teenager gets their drivers license and fledges from the nest with wheels! There is a bit of fear in just thinking about this.

This is not being in the moment and I'm sure it will all unfold so that each new step, literally, is one that we both feel confident with.

I've been watching for crow babies leaving the nest in the White Pine tree. I wonder how they will clamber to the side of that "sink sized" nest that is at the very top of that huge tree and jump off in hopes of gliding down to some soft landing. But they have a family of 4 crows who are constantly swooping in with food, swooping in to chase off Grackles or squirrels or raccoons (I assume, at night). This same family loudly broadcasts when Ella and I are out in the morning and come baby crows leaving the nest time I'm sure we're going to see a whole new kind of activity of protecting the fledglings.

And this is how I see our community as well. As Jim fledges this safe nest I'm sure the flock of friends and neigbhors will be right there to just stand guard, to watch over and protect and swoop in whenever needed.

We will be OK.

Loving you all back!

Mary

Blossoms

posted by Mary Lello, Thursday, May 14, 2009, 12:04 PM

I got home Monday after a wonderful 2 nights away to find Jim walking with a cane and sleeping upstairs in our own bed. BIG changes very quickly! Our oncologist, Tracy Weisburg, contributes this to the Avastin - that VEGF inhibitor that is literally starving this tumor of it's blood supply.

Wow. Wow, wow, wow!!!

To say I'm surprised at how quickly this is all working is an understatement. To say how delighted we are at how quickly this is working is also an understatement. Perhaps it's because Jim's a Capricorn that he gets frustrated that he can't do everything by himself RIGHT NOW. "I'm going for 100% recovery", he'll say to me. Sounds like a good enough mantra in my book! But that recovery has a path that we must go down and I have to keep reminding JIm that last week he had to be in a wheel chair, that last week we had only hoped that he could go upstairs to our bedroom, that last week he could barely string together a few words. Good reminders for both of us.

I was talking with a friend last night about how people keep telling us how cancer was such a gift to them and how through living with cancer they learned how to live. Man, this sounds so wonderful and Kathy said maybe this is a hindsight thing. Maybe she's right about this. I keep expecting to start seeing the gifts that cancer brings .... besides all of you and all the love we are surrounded by. OK, this is a HUGE gift but let me finish. The whole "seize the day" thing and living joyfully in each moment just hasn't hit us yet. Maybe it's because we have been just trying to keep our heads above water here. Dog paddling like mad to keep from sinking under the crush of prescription drugs, supplements, learning to walk again, being safe, trying to remember a word ... a sentence... a full thought. The frantic daily pace of taking care of someone 24/7 as well as trying to do all the other daily things that must be done is just so exhausting. Maybe if this gift were to hit me in the face I wouldn't even feel it .... everything just feels so numb sometimes.

But listen to me,

for one moment,

quit being sad.

Hear blessings dropping their blossoms

around you.

Rumi

And I am trying to listen. I am trying to hear the blossoms dropping. And I am so grateful for all the reconnections, the new connections, and the tremendous love that connects all of us. And I remind myself of where we were last week .... and I see Jim laughing at a joke someone cracks and realize he actually understood the joke! And I see him navigating the stairs and able to get out to the car with just a little help and I say .... 'blessings dropping all around you" .... yes. OK. I'm learning to listen more. And perhaps, in hindsight, I will understand how the ability to hear the blessings dropping and to be grateful for these blossoms IS the gift that cancer brought to us.

Loving you all back as you all truly are our most cherished blessings,

Mary

Spring Break!!!!

posted by Mary Lello, Saturday, May 9, 2009, 5:56 AM

Jim is walking better all the time now. Yesterday he was able to walk through our garden and then get down the stone steps of our house to the car so that we could have a 'family outing'. It was a pretty day and I needed to do a few things. Although I didn't let JIm out of the car as he still needs too much help to walk he was happy to wait while I ran into the various shops I needed to go to.

When we got back getting back up the steps was a bit more difficult. He powered himself up the stone steps and then decided to do the steps leading up to the front door. There was thunder clapping and a black sky threatening to open up on us at any minute so I agreed to this shorter route into the house. There are quite a few steps to our front door and that right foot just was NOT getting up and over the rim of the step. Luckily our neighbor, Anne, came running over and was able to lift Jim's foot up and over each step - and thus, we got into the house before a thunder storm hit! Exciting times at the Pitt.

Stacie arrived last night. Donna arrives tonight and our friend, Greg arrives on Monday. The new recruits are flying in from the West to see Jim and give me a much needed break. I leave today for the weekend with 3 girl friends. We are taking our bikes, our running gear, Ella (our sweet, sweet dog) enough food to feed an army and really good wine and heading to Kate's house on the lake. YES!!!! It is a little bittersweet for me as it's hard to leave Jim but being in the care of his 2 sisters and Greg (who is like a brother to JIm) I know he'll be fine and I really DO need this break.

Since these recruits will be here for 8 days I took the week off from work. I realized that I never stopped working through all this. Idiot! So I admit to being a bit burnt out right now (duh) and really looking forward to leading a bit of a normal life next week. Being able to just leave the house to run an errand, go for a bike ride or a run without needing to also schedule all the different man-sitters to be here so I can leave for a couple hours. FREEDOM!!! What an amazing feeling. I'm really hoping I don't get too spoiled with this.

SPRING BREAK for me and all the caretakers who have been coming weekly to be here for/with Jim while I go to work. Yes!

See you all when I get back on Monday.

Mary

New Day Dawning

posted by Mary Lello, Sunday, May 3, 2009, 2:58 PM

Jim is doing amazingly well these days. He is beginning to walk only holding onto my shoulder. That right leg, though still gimpy and the foot still gets caught and stuck, is moving on it's own now without my needing to push it for him. He's started lifting his right arm and is able to flex the hand open and closed. I tell him, when his leg/foot gets stuck and he's unable to move it, that there is memory in his cells, that this information does not need to come from his mind really, his body knows how to do this - and he will immediately take 3 glorious, perfect steps. Then he'll look at me and say "I like that idea. I think you're right".

Oh, yes, he's talking again. He can't always complete a sentence and he will start out knowing what he wants to say and then freeze - just unable to get the last word that will actually inform me of what he needs. He is amazingly patient though and eventually we figure out what it is he wants to say. Or not.

This is a whole new world from 6 days ago. I can see hope in his eyes again and a renewed spirit. Today we went outside and ate our lunch on the deck. I wanted to do a bit of raking and a other garden work. He is feeling so cocky these days that he wanted to help me rake. SO, we walked out onto the lawn. I think he began to realize that maybe he was feeling a wee bit too confident in his abilities right now so rather then try to rake (which would truly have been impossible!) he sat down on the lawn and allowed me to do the raking. Then he lied back and lay there looking up into the trees. You know, when was the last time you did that? I can't remember the last time Jim Daniels DID that. To me this looked like the best healing medicine to happen for him, to just lie in the grass and stare into the tree branches, watch the clouds and feel the Earth supporting all of his body and being.

I also feel this illness is showing me JIm's true essence. So much gets stripped away when a person is this sick and this compromised and challenged. But, what I am witnessing is just the bare honest human being that Jim is begins to really shine. And this essence, this being is so incredibly loving, gentle and kind. Sometimes when I ask him the simplest question "do you need a blanket?" his response will sometimes just bring me to tears. He never says simply "yes", he usually says something more like "maybe I could use a blanket if you don't mind" .... and always "thank you Mary, so much". This isn't just being polite, lord knows he doesn't need to be that with me all the time, but more really who JIm is and how he has always interacted with people - on a deeply appreciative level for who YOU are. It's really quite wonderful to be around this and to see this man in this way again.

So, we are doing much better these days. We are hopeful that JIm will be doing stairs again soon and we both can be back upstairs in our own bedroom and bed. We look forward to being able to go out for drives again without having to use a wheel chair to get us to and from the car. And every tiny new development gives us new strength and belief that there is a new day dawning. As that old 70's song goes " There's a new day dawning and it's just around the bend, there's a new day dawning, this ones coming to an end".

Or something like that!

Thank you all for being here with us on this difficult journey,

Mary