Dana Farber

posted by Mary Lello, Wednesday, November 25, 2009, 12:00 PM

So many of you are writing and asking how it went at Dana Farber (DF) that I feel I should post a quick write up to fill everyone in. There is still a lot more information to gather but here is what we know so far.

Dr. Wen did not think the tumor looked that different. He did not think the swelling, if that is what it even is, is significant at all. But he wants to see Jim's entire MRI history in order to really make this call. Todd got on the phone before we were even in the car and had called the MRI library in Portland and requested the disc be made so we could pick it up today. He then called our mutual friend Don Harrington who is going to the library and then Fed Ex-ing the disc to Wen today for us (THANK YOU!!!) Wen will have the disc with the entire MRI history on Friday when he's back in the office. I hope to hear from him again on Monday.

Wen did say that the change in Jim's speech may be signs of the tumor changing even if we can't see this on the MRI image. Here's the Catch-22 of all this, if Jim's tumor is not worse then he is not eligible for any new drug trials. So the waiting game is to wait and see if the tumor gets worse or another one starts to grow and THEN we can try something new.

There is a possible trial available with a drug called XL184. This is another VEGF inhibitor type drug but with more of a punch. In that whole angiogenis process that brings more cells and blood supply to a tumor VEGF is a big contributor and what cancer seems to enslave. Avastin targets this VEGF and inhibits it. But now I've learned there are THREE factors called MET, RET and VEGF2. With cancerous tumors these 3-stooges seem to be mutations of the normal receptors. All 3 receptors are key to driving a tumors formation and growth. XL 184 targets all three of these receptors and has proven to not only inhibit the growth of a tumor but also to have tumor regression.

This is a phase II trial - which I like - and Dr. Wen said "if it was my wife sitting here in Jim's place this is what I would want her to be doing now". Alrighty then!

Jim needs to be off Avastin for 4 weeks before he can begin taking the pill of XL 184. IF the MRI's show Wen that Jim's tumor may be changing then we will go back to Boston on Tues. and Jim will undergo a series of tests to see if he's a good candidate for the trial. If he passes these tests then he will start the XL drug within 4 weeks and we will need to go to DF every 2 weeks for tests and monthly MRI's.

If he is not a candidate for this new drug then we will go back on Avastin and continue with this regime - possibly adding chemo if needed (grrrr!). Dr. Wen did say that we can always go back to using Avastin but that being on Avastin too long may limit us to being eligible for other drug trials down the road. THUS, if we can get into the trial now the timing would very good for us.

There will be more information coming, obviously! But both Jim and I are feeling DF went very well and we are hoping to get into this trial. I will keep you all posted.

Have a safe and happy Thanksgiving everyone,

Mary

Trouble, oh trouble can't you see ...

posted by Mary Lello, Sunday, November 22, 2009, 5:45 AM

The subject is from a Cat Stevens song and has been going through my head this weekend. It's been a very tough few days.

Yesterday I went to the Hospice where my friend, Betsy, has been moved to after spiraling very quickly down when cancer was found in her spinal fluid. They have stopped all treatments and she's on morphine to keep her comfortable. Two other NESA Bellas joined me there. Last summer, when we had all gathered to celebrate 14 years of friendship and love the host of the party, and owner of the cottage on the beach, Elaine, had ridiculous, bright, flamboyant sunglasses for everyone. We all wore these glasses all weekend. It gave us all a different perspective on our world ..... and something to laugh about whenever we looked at each other.

Elaine drove up from Massachusetts yesterday to join Julie and I at the Hospice. Betsy was lying on the bed with her loving partner, Ann. I crawled up on that bed and gave Betsy a gentle kiss on her forehead. She opened her eyes and said "oh,my, Mary". And then Elaine crawled up on bed with a pair of those wonderful bright yellow glasses on .... and we saw Betsy give a small, weak laugh. The 5 of us just hung out on the day-bed that Ann has been living on beside Betsy and saw Betsy smile a few more times. And then it was time to leave. And we all understand that we may not see our sweet Betsy again.

Prior to this visit I had spent my early morning hours researching treatment options for Glioblastomas so that I might be educated when we see Dr. Wen at DF on Tuesday. This is not light reading. And although there are new and advanced things coming out all the time and we may or may not find some of these at DF all readings will emphasize how fatal this diagnosis is. There is still no cure. There is no magic bullet. I don't know what I will die of but I do know what is going to take my Jim. And I know that he and I probably do not have the luxury of seeing each other with gray hair.

Trouble, oh trouble can't you see ....

I went to see the Yarmouth High School play, Little Shop of Horrors, that is directed by our good friend Betsy Puelle. As always Betsy is a magician with high school kids and this play may have been one of her finest. For a few hours I had a diversion from my thoughts. But on the ride home I thought of Anne on that day bed loving her Betsy to the very end ... and beyond.

Trouble, oh trouble can't you see ....

One of these days I will write about my family of 7 crows, who make me smile every morning when I go out to feed them. But not this morning. My heart is so incredibly heavy these days.

Loving you all back,

Mary

Dana Farber

posted by Mary Lello, Friday, November 20, 2009, 4:30 AM

We are going back down to Dana Farber on Tues. 11/24. Our ever faithful driver, Todd, is willing to drive us down even though he will turn around and go back down on Wed. to join his family for Thanksgiving. He tells me that I always fall asleep either going down or coming back so clearly it's better someone else drives for me. Yes, he's got a good point! And I'm very grateful he is so generous.

The last time we saw gentle Dr.Wen Jim was in a wheelchair, unable to stand to even step on a scale and unable to answer the simplest of questions. Dr. Wen will see a completely different Jim this time. But last time we were there Wen had advised that we get on Avastin. I had said to this kind doctor that if/when we come back down he will have something new for us ... and unspoken was the "something magical and powerful and hopeful that will save this man from this cancer'. And Dr. Wen had said "yes".

I honestly didn't think we'd be going back down so soon.

Everyone is telling me how this is a good thing, to get back down there, get into a trial if there is one, get lined up for the newest and bestest stuff .... so why am I so scared? Why does going down there feel like defeat? Feels like this f-ing tumor is winning?

I am scared this week. That is my truth. I rarely admit this to Jim. I will only honor and acknowledge his fears and tell him that I have fears too. I rarely label them. I don't want to be negative or fatalistic ..... but this week I'm getting hit with all kinds of realities and it IS scary.

And it's all coming at this one year mark - the holidays.

Damn.

I shall post what we learn at Dana Farber so stay tuned.

Have a wonderful and safe Thanksgiving everyone ... and DO be thankful for your loved ones, for your health, for the abundance in your life.

I too, shall give thanks with Jim at my table this year,

Mary

The Jim Daniels Fund

posted by James Jaffray, Tuesday, November 17, 2009, 10:15 AM

Several of Jim’s friends have written to ask if the Jim Daniels Fund is still active. It is very much so. So many people have done so much that I have hesitated to ask for more. But if you have read Mary’s recent postings, you know that money is tight.

The fund was established almost one year ago to help Mary and Jim with insurance deductibles, non-covered medical costs and living expenses due to Jim’s lost income. Your response has been overwhelming, and has allowed them to pay off two years of very high deductibles (Jim was diagnosed in late 2008) as well as provide some meaningful relief from non-covered medical expenses.

I know that Mary and Jim are very, very grateful to the hundreds of friends that have supported them through this ordeal.

Jim is holding his own, and just by doing so he is beating the odds. He and Mary are waiting patiently for new treatments to emerge. And one will. In the meantime, one way we can help is by trying to make their financial lives a little easier. If you have given in the past, thank you so very much. Please consider doing so again. If you have not made a donation and would like to, your gift would be most welcome.

Checks can be made out to The Jim Daniels Fund and sent to Jim Jaffray, PO Box 193, Blue Hill, ME 04614. Please note that all donations are treated as gifts and are not tax deductible.

"Jim-nasium"

posted by Mary Lello, Sunday, November 15, 2009, 4:45 AM

"Jim-nasium" is the term Jerry Sanders has come up with for our living room. To fill everyone in, Jerry along with our friend Steve, have turned our living room into a rehabilitation center now. The magic is if you walk into this living space you don't see it. There is a treadmill in one corner that folds up out of the way pretty nicely. Over this treadmill is a pulley system that attaches to a climbing harness that Jim wears while on the treadmill. This is arranged perfectly so that there is a tension on Jim that keeps him safe if he should trip while on the treadmill he won't actually fall down but rather sit dangling from his harness .

There is another set of hooks in another spot. A massage table is set up under these hooks. Jim lies on the table and we put his ankles through these padded stirrups that are attached to climbing ropes that hook into the hardware in the beams over the table. This allows a person to swing Jims' legs easily, to get his hips rocking and swinging in order to relax his whole pelvic girdle.

Jerry and Steve have made a video of all these different exercises so anyone can see how to do it with him. One of my favorites is the 'rowing' exercise. Jerry has Jim hold 2 longish, light weight, plastic bars - one in each hand - and Jerry holds the other end of these bars. Then Jerry starts a rowing motion with Jim to get his right arm moving .... and the 2 of them will sing "row, row, row your boat" in an exaggerated opera - very manly - style! Very fun!

Singing uses both sides of the brain so a person can sing when they can't talk. I witnessed this one day while Jim and I were out for a drive. He has been using "preservative language" which is a phrase or word that the brain seems to resort to when he can't find the word or phrase he REALLY means to say. For Jim that phrase is "how long...." This is NOT what he wants to say, nor is he always asking a question about time but it may be the only phrase that will come out - much to his frustration (and mine).

On this drive we took Jim was stuck on the "how long ..." phrase so I started to help him remember some other ways to start a question - "how old", "how many", "how much". With the "how much" I launched into that children's song "how much is that doggie in the window" ... and Jim started to sing it with me pronouncing all the words almost perfectly! WOW! So we tried another song "Jingle bells" .... WOW, WOW! It's true - he can sing close to perfect even when he can't speak. So I've told him he should just launch into his own little opera when he needs to say something!

I don't think it works this way though.

Some good news - as I feel we ALL need some of this! - I think Jim's speech is improving a little bit. There is still a huge struggle but he is NOT saying "how long.." nearly as much. Friday he looked at me and said "I want to talk to you" perfectly. It was a very emotional sentence because he and I really miss being able to talk with each other, but I was cheering with that perfect sentence being said! And at times he'll just talk ... I might not be able to understand what he said as his words are jibberish since his tongue isn't working so well but his mind is working in complete sentences and in his mind those words are THERE! I've told him, just talk, just go for it, who cares if I can't understand it? Just let it rip through your mind and connect to your tongue because eventually, someday soon, it's going to start coming out so that we all can understand you!

I think the steroids are doing their job is what I'm saying here. As much as I hate them - they are a good right now.

This gray morning I will go into the hospital to see my friend, to offer support to her with my love as it's all I can give her right now.

But it's enough,

Mary

Newest News

posted by Mary Lello, Saturday, November 14, 2009, 5:15 AM

Jim went for his biweekly Avastin infusion and we saw Dr. Weisburg. We got informed on what she suspects the swelling is that was seen in the MRI 2 weeks ago.

The tumor looks the same, no bigger, no smaller but the edema is all around the tumor. This could be cancer at the very cellular level. This tumor could be sending out tendrils and the swelling is the very first signs of this. All Dr. W. can offer us is to add chemo, CPT-11, in with the Avastin. She would rather have us go back down to Dana Farber and meet with Dr. Wen again and see what other options we might have.

She said that Jim is doing fantastic and has amazed all his doctors. She added "I know this doesn't all feel amazing to either of you, but from the medical stand point, JIm, you are amazing!" she added that Jim is young, very strong physically and if there is anything new out there that is being tested or that Dr. Wen may know about she wants Jim to get it. He's the perfect candidate.

She also wants the steroids increased from 2mg/day to 4mg/day to try and get the swelling down. She believes all the trouble with the speech is this swelling. It was our first small change in his symptoms - always a red flag.

Jim took all this really well. I'm in a bit of a funk. Dr. W. said this is NOT going backwards, it's forging ahead. She said the swelling might be the tumor disrupting the natural flow of spinal fluid in which case DF is the place to go to get a shunt put in to drain this. But I don't think this it what she believes is going on.

It feels like we are going backwards to me. It feels like the cancer is 'coming back' .... though it never really left. It feels like we are going back to Dana Farber in hopes that they can offer us something more. I'm not taking all this real well.

And of course I blame myself - we got lax on the diet because Jim really enjoys a beer and sweet potato fries with his burger at the Tavern. I've stopped the supplements because I can't afford the $800.00/month bill. I've started too many of my prayers with "&$%* YOU!" I know this is all irrational and it's nobody's fault ... but it's still hard not to feel I'm doing something wrong here.

OH, and there's more good news (yes, I'm being sarcastic) I found out that the fabulous offer that our PT office gave to us is actually DOUBLE what I thought it was. Oopsy. So now I have to go to them and tell them I can't afford the 3x/week and will have to cut PT down to 1x/week. A wonderful friend has offered to help me with this so we can go at least 2x/week. I'm still thinking about this offer as it's hard, always, to accept such gifts.(Our insurance will kick in again for this the first of the year, but our plan offers a very small amount of money for all therapies.)

In addition I have learned that one of my sweet NESA Bellas - a woman I went to acupuncture school with (NESA) and whom I have known for 13 years - is at Maine Medical Center now. Her breast cancer has metastasized to her brain and possibly her spinal fluid. She is basically riddled with it now after fighting for 8 years. They offer her more chemo, or to stop it all together in which case she has limited time left.

Can my heart take any more without breaking completely?

Yes, I'm in a funk for sure. BUT I will get in to see my friend on Sunday, I will make the appointment to go to Dana Farber, I will rally and smile and forge ahead because this is my life and there's no running away from it.

I'm not quite ready to start my prayers with "Dear God" though, sorry.

Loving you all back - because all this love is such a gift,

Mary

November

posted by Mary Lello, Thursday, November 5, 2009, 6:00 AM

November. Always such a stark month. This morning the air was alive with golden, dancing leaves as they were pulled from their branches by the November wind. The leafless branches look so bare now and click against each other in the cold air. I took a moment to watch the leaves falling, so many of them twisting and occasionally rising up and spinning on some unseen gust of warm air. They reminded me of little brown birds that flitter and swoop. Perhaps the bird is mimicking a falling leaf? One way to avoid a big hawk from barreling down and snatching you if you're mistaken for an Oak leaf falling.

Annie Dillard once wrote "If I'm a Maple Key falling at least I can twirl". I thought of this as I watched the Oak leaves twirl to the ground below. Perhaps I need to twirl just a bit more these days. Perhaps that is all that is being asked of me at times - to just let it go, release my hold and twirl.

I need a billowing skirt with at least 2 petticoats underneath it though.

We're coming up on 1 year as we enter the month of November. Last November Jim went out to stay with Stacie in California and would call me at night. I remember one night when he called, I was in bed as he had forgotten the 3-hour difference in time and he sounded so crazy. I tried to calm him down and before we hung up he sounded better. Then he forgot to disconnect his iPhone and I laid on my bed and listened to him in California crying and yelling at himself on some freeway while in the car.

Ah yes, the tumor had taken hold but we all thought he was headed for a nervous breakdown. If only that was all it had been.

November is such as stark month. The colors are draining from the trees, their branches lay gray and dormant against a gray sky. My crows are easier to see in their roosts, black shadows against all this pewter grayness. Cardinals stand out like strikingly beautiful red flags as they fly into the ever green rhododendrons, taking my breath away with this flash of color.

Red flags. I think I will always see sudden change in emotional behavior as a red flag from now on. Before I had said to our brain surgeon that 'nobody thinks of a brain tumor but YOU!' .... but I will forever think of a brain tumor from now on. I now flinch at a headache, another red flag, and worry if it doesn't go away with a simple pain killer. I sleep fitfully, always listening as best as a hearing impaired person can listen, with my body tense, even in sleep, and I wake frequently waiting for the clock to to show me an early morning hour that feels OK to crawl quietly out of bed - finally.

November is a stark month. All the brown leaves lying on brown grasses. Everything seems to be just waiting for the first snow fall to add a new sparkle to the landscape and a protective covering to the Earth and all those who hide within her for the winter months.

And what am I waiting for? A friend who enjoys the Sunday paper again, who is quick witted and able to make me laugh from deep within my soul. Who will ask me to get out in the dark morning and run the trails with him and I'll groan but I'll do it and feel so good once I'm out there and happy he asked me .... happy that he's still with me. I'm waiting for a new life, or our old life renewed.

Maybe it's time to just let go, to let be, to let it all just happen as it will. To stop waiting, to release my hold, to allow Life to step in, to unfold my tightly clenched being and dance in the wind, to ride the currents up and up and .... twirl.

This is my November,

Mary

"This is so hard"

posted by Mary Lello, Tuesday, November 3, 2009, 5:15 PM

These are Jim's words lately. When I look up from doing whatever at the breakfast table and he's hunched over and crying ... "this is so hard". I'm glad he can get this many words out right now but I so wish he could tell me more, say more, and this is what he is referring to as being so very hard.

I can't imagine what it must be like for him. I only know what it is like for me and it IS so hard. We have lost so much of our quality of life to this disease now. It's truly difficult to explain to someone who asks 'how are things going?". It's difficult for our closest friends - who see us daily or at least weekly - to understand the constant daily grind, patience, fortitude, strength, endurance, tears and the occasional laughter that goes on in this house so it is next to impossible to explain to someone we see infrequently.

This IS SO very hard.

And at least I can talk to people about it. I can look at a friend in the grocery store and with tears in my eyes tell her I'm just exhausted. At least I can get my thoughts out of my head and into the stream of consciousness. At least I can walk outside and throw things and yell a few good swear words. Well, actually, these are the few words that Jim CAN say that come out crystal clear! Which is very common with folks who have this kind of speech deficit. It's a really good thing!

This all is just so hard.

Jim got another MRI last Friday 10/30/09. Dr. Weisburg is out of the office for a few days this week but had told me to call and talk to her NP, Dawn, who could give us basic information on the MRI. Today Dawn left me a voice mail that said the tumor is stable but "there is some edema, which can happen". I'm not sure why this 'can happen' or what is causing it but I do know Jim needs to go back on 2 mg of steroids a day again. DAMN! For whatever reasons this feels like defeat for me, going BACK on steroids for edema in the brain. Haven't we been here before? I know 2 mgs is nothing and the edema didn't seem to raise huge red flags with the oncology office since it "can happen" but I'm red-flagging all over the place! And I worry how Jim may take this news as well.

This is so hard.

And all we have, in thin, frail fragments, is hope that it will only get easier.

I do need to add before closing that this morning I was leaving to go to work. Jim kept trying to say something and was getting really agitated and upset because he couldn't say it and he couldn't let it go. When this happens, that he can't let it go, I know it's important to him. So we went through our questions and my trying to understand what word he was saying and his getting more frustrated. I knew it was about today and ... VOTE! You want to go vote? YES! AH!!! So our friend, Rob, took JIm over so he could vote on the very important issue of equality of marriage for all in the state of Maine. I'm not surprised Jim remembered he had to vote today, he is Jim Daniels after all! But I'm so very proud of him for remembering to vote today!

Rob shared that Jim had a moment of panic before entering the High School and just looked at Rob. Rob told him "Jim I will be your eyes and your words in there ..." and Jim relaxed and went in and voted with Rob at his side.

Yup, those are the kind of friends we have around us!

This is so hard - but it is this kind of love and support that offers a softening to our difficult life right now.

Loving you all back,

Mary