Monday, June 22, 2009

MRI on 6/20/09

posted by Mary Lello, Monday, June 22, 2009, 9:00 PM

Good news today! The tumor has shrunk a wee bit, but even a wee bit - and we're talking point-something mm's - can be dramatically different for the brain. It looks very different now too. Dr. Weisburg showed us the images of the MRI taken on April 22 and explained what we were looking at and the tumor had a lot of whiteness around it. She called this calcified - or something like that - though I don't think that's what is was. Maybe I didn't hear her right. But it just looked .... healthy. The MRI from saturday 6/20 showed a tumor definitely a wee bit smaller with no whiteness around it and looking very different. Not sure how to explain it but it was most certainly .... different. Maybe less alive looking?

The hydrocephalus vastly changed from one month ago too. The waters have receded! The tide has gone out! However you want to look at it, this is great! Dr. W. was also very happy that Jim no longer has double vision. She was pretty sure that was going to be a permanent problem due to the swelling from the hydrocephalus damaging the optic nerves. NOPE!

Yes, I'm relieved. We would both like to see his speech begin to improve. Jim is horribly frustrated these days with the inability to make his mouth work and say the thought or word that he's got in his head. He can remember some great swear words when this happens though! I think it's time for speech therapy to help him begin to make new connections and find new tools to use. Jim didn't push for this before and didn't seem to really want it but he's ready now!

He's walking a bit better these days. I think the PT may be helping him get stronger. He still can't bend that leg and I still feel I need to be close by when he's walking to catch him if he starts to fall but this Is slowly improving and, if he seems real steady, I might back off from my hover craft mode.

That's the scoop.

Loving you all back!


Saturday, June 20, 2009


posted by Mary Lello, Saturday, June 20, 2009, 8:27 AM

I was re-reading some of these posts and had a HUGE realization. On 5/3 I was hoping that Jim could go upstairs, I was excited that he was walking by holding onto my shoulders, I was elated that he was saying a few words and able to understand things said to him. That was just over a month ago!?

I've been on an emotional roller coaster lately. When Jim is doing well I'm upbeat and OK. When Jim is struggling for the word or thought he wants to say, struggling to get that right leg to move and not trip him, struggling to get the right hand to do a simple - yet still unattainable - task, then I find myself frustrated, scared, sad and angry. But damn, JUST one month ago Jim was still just getting over hydrocephalus and needing a wheel chair to leave the house. Perspective is everything!

We go get an MRI today. We won't get the results of this until we see Weisburg on Monday and get another Avastin infusion. I am a wee bit anxious about this MRI even though Weisburg offered that she believes we will see that the tumor has shrunk. She rarely offers this kind of foresight so it was encouraging to hear her say this. But I want to SEE this for myself. I want to KNOW that the Avastin is still doing it's job and that the symptoms we still struggle with is indeed healing. And the deep, tumor-level-healing, takes time. We are, after all, just starting this recovery road and it's slow going when you don't walk or talk so well.

So I will let you all know what I know when we know it .... and know that we know what we know and that we don't know what we know yet don't know .... sorry, couldn't resist that Rumsfield kind of speak!


Thursday, June 11, 2009

" 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,


Monday, June 8, 2009

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,