I'm talkin' here!

posted by Mary Lello, Wednesday, January 27, 2010, 5:00 AM

Something is changing. There is something happening in Jim's brain that is new. Oh sure, he has better days then others, but when he has a good day he's very, very good.

Monday was a good day. I've been working with him to say one sentence to me "tie my shoes", or even just "tie shoes". For months I would not tie his shoes until he said this sentence back to me after I would initiate it. But Monday he came down into the kitchen and said "Mary, tie my shoes". I hit my head on the ceiling in my leap of joy! It didn't come out perfectly but it came out well enough. And when his speech therapist, Dena, worked with him Monday afternoon she said he was doing things that he wasn't able to do back in July when she first tested him, that he was saying more words and saying them easier then he has in months. A very good day!

All the care takers met a couple weeks ago and I shared this idea that Todd had suggested - that each person could pick a sentence that they would like to practice with Jim, and that sentence could become their "tie my shoes" experience. I suggested it be 3 words and to accept less but NOT to accept garble. Make him say the word perfectly. With practice, mimicery and watching another persons mouth for the formation of the letters he can say words damn close to perfect. I also suggested that if they tell me their sentence that I could try and practice it with Jim on a regular basis so he doesn't get that sentence only once a week.

So we are getting some wonderful sentences to say; "I want to meditate", "I love you", "Go for a walk", "Read to me". We want to insist that JIm talk to us instead of our figuring out what he wants and then just doing it for him. It feels like a good plan anyway.

Todd is trying to get Jim to say "Damn it" after each sentence as well as some other proper use of expletives in a sentence form. Thanks a lot Todd! But my favorite sentence might be the one our friend Matthew said he started to work on - "I don't think I feel like doing that just now thank you" ... this cracked both JIm and I up since it's so impossible presently! But I loved the humor of it! Jim loves the humor of it too. Lately there have been almost as many belly laughs as tears. Balance is nice.

It just feels like we've made a little step up away from that long and exhausting plateau we've been on. It feels like his brain is making new connections, just starting to respond. Baby steps .... no, more like insect steps. But even the tiny red ant gets to the top of our massive Oak (Grasshopper). I tell JIm "we've climbed so many mountains by taking one step at a time", and as much as we both would like to sprint up this damn path we're on, we can't. So I say just keep moving forward ...

• .. and today it feels like we are.

Loving you all!

Mary

Human nature

posted by Mary Lello, Thursday, January 21, 2010, 4:15 AM

Is it human nature to want more when you've already gotten more? Or is it just me? When I've been given that inch I want the entire mile, as the saying goes.

When Jim was so incredibly sick with the hydrocephalus; unable to walk by himself, dress himself, do absolutely ANYTHING by himself, I remember thinking that if we ever got to a place where we could go to the Tavern on Thursday nights again that I would NEVER take that for granted. Well, we've been going to the Tavern for many months now and I do believe I'm taking it for granted.

You see, now that Jim is more independent I want more! I want him to talk to me again. I want him out there playing in the snow with me again. I want him to be a partner in life with me again.

Is it just me? Is it our nature as humans to always be wanting more? Do I take the fact that Jim is still here for granted? Do I take the fact that he is now able to do more then I could even hope for back in April for granted?

If the Gods are trying to teach me a lesson here I worry I might have missed it. If I'm suppose to learn acceptance and how to be grateful for small things in life and not take things for granted I'm afraid I'm blowing it. But then I'm only human ... and it's my nature?

I was able to go out and xc ski yesterday with our dog, Ella. Over the past couple days we've had some snow storms that dumped over a foot on us. It was so beautiful out in the woods. The light was that gorgeous hue that happens when there are black, black clouds with small breaks in them that allows the sun to shine through. It's hard to describe this light it's so incredibly gorgeous and magical. It has a color that only happens when the sky is like this. And all this played off a world completely laden with snow. I would stop and just breathe in this light, breathe in this beauty.

I admit to my feeling more like those rolling, black clouds with their varying shades of gray then the rays of golden light lately. But I did not take for granted that I was out there and able to push my skis through that deep, heavy snow. I did not take for granted the moment of absolute solitude and that quiet world all around me. It is my nature to need that kind of nurture that I only find in snow covered conifers and a silent wood.

I do not take any of you for granted and all the gifts that you offer to us, all the emails of love and support you send me, all the well wishes and knowing that we are being held in your hearts. It is not my nature to take any of you for granted.

It's just that sometimes, with this new life, I do wish for more ...

Mary

Bitchin'

posted by Mary Lello, Saturday, January 16, 2010, 5:00 AM

"Two trapped rats". That's what a friend told me after she got a small window into our lives. She wanted to take Jim to lunch so that I might get a couple hours of free time. Jim didn't want to go, not without me, not with his communication abilities so limited. As we were trying to decide what to do I mentioned that I wanted to go grocery shopping and this friend said "give me your list and I'll just go do it". I lost it. I didn't yell but I think I was pretty emphatic in my saying "I JUST WANT TO GO DO MY OWN SHOPPING, ALONE!!"

And that's when she realized that I can not even just go out the door to go grocery shopping if I want to. She realized how she takes all her own freedoms for granted. She realized how trapped I am and how trapped Jim is. "Two trapped rats" .... pretty much sums it up.

Yesterday morning I got an email from a friend who told me she was heading up to the mountains to spend the night with several of our mutual friends and go xc skiing today (saturday). I suddenly felt so incredibly sorry for myself. This is exactly the kind of thing that Jim and I would be doing, and exactly the kind of thing that we don't even get invited to do anymore. Sometimes I don't know which is worse - not getting the invite and not being able to go or not even being thought of. I was so sad all day. Just wallowing in self pity and the loss of so much of our life. Feeling so lonely and being left behind, being left out of all the fun and the normal lives that everybody else around us can lead.

It's true, I can not even go to the grocery store without figuring out who can be here with Jim or I must try and time a short outing with his nap hour. Trapped.

I do not know how Jim maintains his sanity with his entrapment. His inability to get his idea spoken and understood, his tears when I am dressed for an outdoor activity, his total dependence on others to be able to go and do anything. His patience is astounding at times I think.

And so I'm just bitching today. Most of the time I operate in a grateful space, grateful for so much that is offered to us and all the help we do get. But I'm only human and there are other times, that I don't usually share with anyone, where I just lose it and collapse into that fetal position and feel that I may never be able to move again. Wanting so much more then what we have right now. Grateful for all that we have right now. The Yin and Yang of my life.

The red line of the first morning light is just beginning to show on the horizon. Another day is dawning.

Another day. May it, truly, be a good one.

Loving you all back,

Mary

Miracles

posted by Mary Lello, Monday, January 11, 2010, 4:45 AM

We are settling back into our routine. It did seem to take all of last week for Jim to recover from our trip and to get back into the schedule with appointments and care takers coming in for their weekly time with Jim. I think one reason I believe in miracles is the fact that all these friends who have been coming every week on a regular schedule have been doing it for a year now! Each one of them tells me how good it is to have that time with Jim. God, we are so blessed!

We went for the avastin infusion last Friday (1/8/09) and saw Dr. Weisburgs PA, Dixie. She informed us that Dr. Wen from Dana Farber had written them and spoke of his recommendations; to stay on avastin and NOT add in the chemo, CPT11, at this time. The tumor is not showing signs of change and thus we don't need to add the toxin of chemo at this time. We do need to stay vigilant about any changes we may see in Jim, however slight, since any change in behavior could be a sign of the cancer.

This can be hard for me sometimes and why I'm glad there are so man others who see Jim every week and can help me notice any change. There always seems to be more then one variable and so it can be difficult to know ... is that a change?

We made appointments for the avastin treatments through to Febuary. The woman who does this in Weisburg's office said "oh, hey, have you seen my screen saver?" She turned her computer screen to us and there was Jim's picture of the little boy in the Dominican Republic playing in that blue water with the white boat on the beach. I was so surprised! She said Dr. Weisburg has been telling the entire office that they need to check out Jim's website, saying "there are some incredibly beautiful pictures there!" I felt SO proud. But I also got the sense that this office felt proud of Jim! AND I really loved the fact that they are beginning to get a better sense of who he is, the talent that he is and the miracle that he is!

David Reese, our physical therapist extraordinaire, came over to the house this past Saturday. He wanted to see the "Jim-nasium" that we have set up here. Jerry Sanders also joined us so that he and Dave could share all that they do as practitioners and get to meet each other. It's pretty amazing that these guys did this on their day off! He said something at the end of the hour that just blew me away. Dave was explaining how the body responds with this kind of brain stem tumor and how he's seen this in other folks he's worked with over the years. But what he has never seen is how much Jim is capable of doing with what he's got! Dave said it's really miraculous what Jim is able to do and that it just tells him what an incredible athlete Jim is. Dave said, and I love this, "I'm in on this dance. There is NO WAY I'm leaving this floor while this dance is happening!"

I found this guy, Dave, by walking into that office on Rt.1 in Falmouth because it was convenient. CONVENIENT! And what a miracle he has proven to be for us. How quickly he has fallen into this circle of love and become a piece that helps make it complete.

It's feeling good to be home. It's feeling good to reconnect with all these people who are instrumental in our lives now. Who I'm just not sure how I would survive all this without. And I also know that we might not have this home without the grace of so many of you helping us financially. This is NOT an exaggeration. It is just miraculous how you have all created this webb that connects us and supports us in so many, many ways.

Once again I am watching this beautiful waning moon out my window. Aware of the miracle that is that gorgeous moon, that is this breath, that is Jim, that is each and every one of us. And although I don't know where this strange trip is going to take Jim and I on any given day I am learning to trust that miracles are possible and happen daily.

Thank you all. We so love you,

Mary

How was your trip?

posted by Mary Lello, Wednesday, January 6, 2010, 5:00 AM

COLORADO

I do love it out there. I have known for many years that I belong in the mountains. When Jim and I trekked in Ladokh, India with 4 other friends some years ago I found myself gaining energy as we reached higher elevations. Oh, sure, the 16,000 ft altitude affected me and I had to take a few steps and stop to breathe, another few steps and stop. The slow, steady pace of smaller lungs born to those who live at sea level. I was always at the front of our group as we climbed higher and the peaks of the Himalayas began to appear closer. Descending would find me at the back of the pack, going slowly, regretting the descent.

I did take some time during our trip in Colorado to get out there and do some jog/walking up some easily accessed, snow packed trails. It took most of the trip to get acclimated so it was slow going much of the time - but that was fine. I’d stop and look up, always up, where the blue of the sky is startling, like the iridescent blue of a Stellar’s Jay tail feathers. The contrast of the white peaks against this blue almost hurts the senses to gaze on. The Juniper scrub brush lace the sides of these hills, short and thick vegetation evolved to withstand the harsh conditions of a mountainside, of a dry climate. Evolved with the wild fires that were once frequent and cleansing to the mountains but now get controlled, extinguished in order to save the homes that have been built, precariously, on the same mountains side.

Open air out here. Even the trees do not compete with the view of a peak. Open space, big blue sky, I expand out there. I find I can breathe out there without the constrictions of towering Pines and huge old Oaks that cover the sky and stop the eye from roaming. Only the Ocean offers that view of pure expansion back East. Our friend, Ash, who is in his 90’s once said “I don’t know what to do with the ocean!” My sailing friends will raise a questioning eyebrow to this but I knew exactly what he meant. The mountains offer the dream of an escape. You don’t need much to just start up into them, a pair of shoes and a few supplies on your back and just start walking.

I have used this image for Jim regarding his speech - we climb an entire mountain by taking one step at a time. His brain must relearn how to say a word, and it is the act of that one word that will begin to form a sentence. Word by word we will scale this new kind of mountain in hopes that he can tell me his thoughts again.

DId I get some rest and a chance to relax? Well, no, not really. Vacations are not what they use to be since you never really get a vacation from cancer. But Donna, Mark, Stacie and the Jalberts were wonderful and jumped in when they could to help. So I felt the weight of needing to do it all lifted at times. Funny how heavy that weight actually is when it's suddenly taken from me and I feel a lightness of just my own being. Reminds me of a saying I once heard, "the reason Angels can fly is because they take themselves lightly".

Perhaps I'm learning to lighten up. Perhaps there is security in surrendering and joy in the accepting. Perhaps I'm gaining new strengths by being solo on those mountains, a new sense of courage that I can offer to Jim to help him take that next step. A few needed supplies to carry so we can keep walking up this mountain that is our life now.

Climb every mountain ....

Loving you all back,

Mary

I have a lot to share

posted by Mary Lello, Tuesday, January 5, 2010, 5:30 AM

I want to let all of you know how Dana Farber went as so many of you have emailed me or called us to just let us know you were thinking of us yesterday while we were at DF.

We actually got good news. I would even say GREAT news! Jim is NOT a good candidate for the new drug XL184 because after being off avastin for 4 weeks there is no change in the tumor, or such slight change that it's even hard to tell if there is any change at all. Dr. Wen said that some people with Glio's go off avastin for 4 weeks and there will be a huge surge in the tumor since the avastin is only suppressing the tumor. This is NOT the case with Jim - Jim's tumor barely changed.

There is some light coloring around the tumor and Wen isn't clear on what that is - swelling possibly but he's not sure. If Jim's symptoms had changed a lot - gotten much worse - then he would say the tumor WAS acting up and would want him on XL, but Jim's symptoms are only slightly to marginally worse and it could be just fatigue from all the traveling. As always there are more then one variable .... but Wen and his assistants agreed that fatigue would play a huge part in this.

Jim was disappointed. It was a long, hard day, he underwent a battery of tests and then we weren't put into the trial? What the hey? BUT, Wen wants what is best for Jim and this trial would ask a lot of us in terms of time and energy going down to DFI on a biweekly schedule as well as needing to spend a couple days at a time at DFI in the first 6 weeks of the trial. Of course we would do whatever is needed, if indeed this WAS needed - but it appears it isn't.

In addition, the new drug has a lot of side effects and you never know how an individual will respond to the drug and those. Jim tolerates Avastin very well with barely ANY problems - Wen can't promise this kind of reaction to the XL184. Avastin is working well for Jim, why introduce a new drug with too many unknowns?

So he feels staying in Portland and on avastin is our best treatment plan for now. If things change or get worse then there is a window open for up to 4 months for the XL184 trial.

I will call Dr. Weisburg today and let her know we are ready for another infusion of avastin this week. Besides, we've missed seeing everyone in that office! If life could change so much that I need never go back to that cancer center in Scarborough I would be happy as a clam - but this IS our life now and those folks in Scarborough are wonderful and we have missed them!

Shall post more about our trip tomorrow but wanted to let everyone know our good news.

Loving you all back,

Mary

Transitioning

posted by Mary Lello, Monday, May 3, 2010, 1:00 PM

To all those still checking on our status here ... Jim is starting the transitioning process of releasing himself from this world in order to enter the next. Just yesterday we were allowing all to come, he was awake, aware and wanted to be surrounded by a party; dancing with me from his hospital bed to old Linda Ronstadt and singing along to the lyrics. But today, he's going inward ... although he did do a little thumb wrestle with Stacie when she held his left hand. I'm not kidding!

We are allowing only 2 non-family members into the room at a time. We do not want to try and pull him back in any way.

It's actually been a pretty beautiful process so far. Do not feel you need to come, we all know how much you love him but if you wish to show up then do. Even just sitting outside on the patio here at Gosnell house in Scarborough is wonderful.

Love,

Mary

Hospice

posted by Mary Lello, Saturday, May 1, 2010, 9:45 AM

It's time to let you all know where we are at in this process.

We will be going to the Hospice house from here. We will not continue with treatments except to keep Jim comfortable. The doctors have said he may last for two weeks or less.

This is the end, we all knew it would come at some point ... I just didn't think this point would come so soon. And I think I got complacent, just a little bit, in believing that Jim was so incredibly strong and might even beat this, somehow. But, like so many others, "it" has won. The real healing happens for Jim when he can leave this broken body and be his wild and free self again.

I'm writing from the hospital room. Time is getting short and it's difficult to write much. Perhaps there will be one more post when all is done. I may need to reach out and remember that this community is here for me too.

He loved every one of you so much ... as you loved him.

Mary