Avastin

posted by Mary Lello, Tuesday, April 28, 2009, 6:46 AM

We begin with Avastin today. It's a 3 hour infusion process every other week. I believe we will also do CPT 11 next week. This is a chemo that clinical trials have shown to work wonders on glio's when used with Avastin. Again, I don't know how this is administered whether it's an infusion also or a pill to take at night like the temador.

Yesterday Jim woke and was talking far more then he has for 2 weeks. Although still unable to walk by himself unaided he was moving far better. While brushing his teeth he just suddenly lifted his right arm to rest it on the sink. We both looked at each other in utter surprise and delight! He also was able to lift that right leg as he got settled on the couch. These are small improvements but yesterday they felt like huge leaps! As the day wore on Jim wore out and he stopped trying to put his words together and the movement of the right side didn't happen again. Still he is feeling better, less pain and far stronger. So the steroids are working, in small increments but working none the less.

I'm looking forward to a better quality of life for Jim, which Avastin promises for him at this time. I want him to be more independent again, to feel strong and able to walk outside and work in the garden with me. Maybe trail run? OK, I'll take whatever we can get but we certainly need a bit more then what he has right now.

This has been one tough 2 weeks and it has worn on Jim's spirit. I keep telling him that he can just jump on my tail of hope and I will pull him along with my spirit until he begins to feel his own surge again. He smiles at this and seems willing to accept the lift.

And at night I step outside and stare into the stars and ask that my hope stay strong so that I can indeed carry the 2 of us for a while longer.

Loving you all back,

Mary

Another MRI

posted by Mary Lello, Saturday, April 25, 2009, 4:44 PM

I'm always fascinated by how the word travels through the network of friends. One person calls to ask how the MRI was and already a pretty big group of friends know what's going on. Like tribal drums that beat out some morse code the word gets out. It's wonderful.

But, I'm very aware that not all of you are within hearing distance of this drum beat so I shall fill you in on the most recent MRI that was done on Tues. 4/20/09. We went and saw Weisburg yesterday, Friday 4/24 to hear the latest. She says that the tumor has not gotten any better but it has not gotten any worse either. This is good in the big picture and not a huge surprise. But all the bad symptoms we are dealing with now; right sided paralysis, inability to put words into a sentence, frequent urination, pain that he can't really identify and the need to sleep for hours and hours is actually the result of the newest diagnosis of hydrocephalus, or what use to be called water on the brain.

Weisburg had a neuro surgeon look at Jim's MRI on Fri. and he basically said due to where the fluid is pooling it is not really possible to put drains in. She was going to send an email to Dr. Wen at Dana Faber in Boston to see if they have a way to deal with as well as speak with Jim's surgeon, Dr. Wilson on Monday. I love this woman and the fact that she doesn't take no for answer that easily.

Basically, we need to get this fluid under control in order to improve Jim's quality of life right now. So we've taken the steroids up again to a whopping 24 mgs/day. Weisburg is hoping this will reduce the inflammation and if we see a change in the symptoms then she wants to start Avastin on Tuesday and CPT-11, a kind of chemo to compliment the Avastin. Avastin is an infusion that happens every other week, takes a couple hours and can be done at the center in Scarborough. CPT-11 I'm not sure how that is dispenced but that is the alternate week I believe she said. This was what I was hoping to hear her say but now it comes with a double edged sword. The Avastin will NOT reduce the fluid in the brain and we need to address that before we can do the Avastin! GRRRRR!!!

Jim did put together a complete sentence this morning when he asked me how long I would be gone on a bike ride today. That was the most I'd heard him say in a week!!! He also has slept less today, was able to sit up on the couch when friends dropped in this afternoon and seemed to understand much of the conversation going on around him He is still on the day bed as getting him upstairs would be horrible right now and due to the frequent urination he has me up several times/night. Sleep deprived you ask? Oh, yeah!

It is one more bump in this rocky road for us. I worry that Jim may be losing hope and getting too discouraged. He's in pain and he's not eating real well. I tell him, any animal that wants to live will eat but an animal that wishes to die will stop eating. He'll look at me and pick up that fork and force himself to finish whatever is on his plate. Whatever works!

I do believe all of you when you say we are in your prayers and thoughts. I want to ask you to continue this vigilance for us as we are not out of the woods yet. In fact, I feel we are in a very thick jungle without a machete sometimes! So keep the beams of light and the prayers coming to help light the way for us and for Jim.

Send Jim your love and know that he feels it, always, on some level. And also know that we are loving you all back.

Mary

Counting crows

posted by Mary Lello, Monday, April 20, 2009, 6:08 AM

This is going to be one of the hardest posts to write yet. I'm not even sure where to begin but I have vowed to keep you all in the loop and so I need to give you the most recent update.

Yesterday Jim fell down the stairs from our bedroom to the living room. These stairs are steep and narrow. He was actually heading towards the bathroom but slipped and lurched towards the top of the stairs. And this scene keeps replaying over and over in my mind like a horror movie. As he grabbed for the bannister at the top of the stairs he spun around and slid down the entire flight on his back, smashing head first into the wall at the landing at the bottom. All I could do was scream NOOoooooo! I could see blood and had to move him off the landing to see where that blood was coming from. My old EMT training told me not to move him but he was conscious and not bleeding from the nose or ears and I HAD to see what bleeding. I pulled him off the landing, grabbed towels to stop the bleeding on his head, called 911 and then called Todd.

Todd arrived within minutes ... maybe it was seconds! I think he might have a firemans pole set up in his house with shoes, pants, shirt all set up so he slides down the pole and straight into his clothes and then he's out the door! The ambulance was here at about the same time. I was amazed actually at how quickly they arrived. They stabilized Jim on a stretcher and loaded him into the truck. Todd and I followed in my car and the rest of the day was spent in ER.

This man Jim Daniels, my God, what is he made of? He broke no bones. A CAT scan showed no internal bleeding in the skull or the entire spine. Remember, he's now on blood thinners so this is a real worry. However, on Friday Weisburg made the decision to keep him off coumadin so he is on Tinzaparin which seems to be far better and safer for a any kind of accident .... like a fall down the stairs with the head smash at the end! He is pretty beat up with some great road rash on his arm. I told him we should tell all our cycling friends that he got going really fast on that wind trainer and had a fantastic crash! But guess I've blown that story with this post.

We now have the day bed set up again in the living room. My family showed up in the ER yesterday and whipped into action to track down the bed again and get it set up in the house for us. Wonderful. Thank you! He slept there last night and I slept on the couch right near by. Well, not sure how much I slept really, but this is where I laid my head. Every time I lie down and close my eyes my damn mind hits the replay button and I see this horrible fall with the head smash at the end over and over. And I just start to cry, every time, even now as I write this. It was terrifying and horrible and, of course, I feel so responsible even though I KNOW I'm not. But damn .... it was my watch.

I've been reading the book Suburban Safari by our friend Hannah Holmes. In this book she studies the ecosystem of the American backyard, with her own yard as her study plot. I have just finished reading the section on crows, how they form families and build 'sink sized nests' and have individual personalities. I've started to notice that we have a family here in our 'hood and wondering if we might have a nest around too. Yesterday when we got home I lied down on the couch in front of our windows that look out over the ocean for a much needed nap while Jim slept too. As I woke from this nap I lied there from my flat-on-my-back position on the couch starring up into the huge White Pine tree that towers over my neighbors house. I did not know where I was going to find the strength to move again, nor could I fathom all that lay ahead of me now, again. And then I saw a crow fly into the tree and disappear briefly, only to fly out again. Within minutes another crow, or the same one perhaps, flew into the same spot and then after only seconds flew out again. A nest? I sat up, A NEST!!! And I got excited to think of getting out my binoculars and inspecting this closer in the morning light. And from this family of crows I found that I could still move and was able to get off that couch and get Jim some dinner.

And this morning, I'm watching crows out the front window. Life goes on, in all it's drama and all around us, life goes on.

So shall ours.

Loving you all back,

Mary

Long, hard week

posted by Mary Lello, Thursday, April 16, 2009, 9:30 PM

It's been a long, hard week as you can probably guess by how our Monday began the week! It's Thursday and things really haven't been getting a whole lot better. We went to Dana Farber today. I was not going down there with the naive sense that Dr. Wen was going to have our magic pill, or clinical trial or answers for us right now - and basically, he didn't - but we did gain some information that just feels hopeful. Besides, I love just being in the presence of this man as he is THE MAN for brain tumors at DF and he is also so incredibly compassionate, serene and knowledgeable. He has a fantastic aura. He never talks with a pompous attitude but will answer every question with patience, clarity and integrity for those sitting in front of him. Including Jim, who was so exhausted by the time we saw Dr. Wen that he could not answer any questions nor do any of the physical tests asked of him. But still Dr. Wen spoke to him intelligently and with understanding that the affects of this tumor is NOT the man that he sees before him. That was wonderful to see!

Basically Dr. Wen told us there are no clinical trails that will serve Jim right now but that we need to get on Avastin and he will recommend this to Dr. Weisburg (who is thinking this for us also) but the blood clot may complicate things for us right now as coumadin does not work well with Avastin. Still, we have time to get on top of the blood clot and then get on Avastin. His calm demeanor was wonderful to feel as he basically said Jim is doing really well right now, radiation did it's job, chemo did it's job and so he is responding really well to conventional treatments which is a good, good thing. We do not need to panic or try to rush into the next thing as there is some time - we are still ahead of this tumor right now! - and it is far better to proceed with caution then to try to jump too quickly into new treatments just for the sake of treating the tumor. This was reassuring to hear. Dr. Wen also reminded us that Dr. Tracy Weisburg is "very good" and we are in good hands with her - which I have known from the beginning - so we can trust her and work with her for what shall come next.

Today was a very emotional day for me but other days I am able to sit back and try and find the humor in all this. Jim Daniels has always been the master of being able to laugh at himself and at any given situation. But I recently told Jim one of the things I miss most - besides our entire life - is how I have not heard his laugh since this all began. I will crack jokes and he will smile with this new, odd lopped sided smile and his shoulders will shake ... and this is how he laughs now. When I pointed this out to him he told me "THIS needs to change".

So our entourage that was headed to Dana Farber (Todd, our ever faithful driver and MaryMargaret) all journeyed to Scarborough first for Jim to get this shot he needed this a.m and then we would all just keep going south. He's not doing real well this week so we put him in a wheel chair to take him down to the oncology office. There is a long hall that is all tiled and there was not a single soul in it this morning so I leaned over and whispered into Jim's ear "are you ready?". As he gave me a curious look I just grabbed the chair and started running down the hall as fast as I could push that chair ... and I heard Jim Daniels laugh ... for the first time in 4 months, I heard his laugh!!!!!! And this was one of the most joyous moments for me since before all this shit hit this fan.

And this was how our day began .... and although it didn't end on quite the same note it was a good beginning. I'll take it and hold onto this one.

Loving you all back!!

Mary

posted by Mary Lello, Monday, April 13, 2009, 8:29 PM

Ok, God, I think I've met as many tests as I can possibly meet. I've been a good girl all year long and I've flossed every night so what the F(#* is with the tests, constant tests of our strengths? HUH?

Today I woke Jim from his morning nap around 10:30 after only sleeping for 45 minutes so we could go off to see Dr. Weisburg. An easy check in appointment, should be able to go to lunch and then home so that I could see a couple clients of my own in the late afternoon. Our good friend Matthew was coming by to be with Jim and cook dinner for us with a small gathering of some other friends. Easy day, right? WRONG!!!!

Jim has had some right leg swelling and, yes, I was concerned about it but like most things it was worse over the weekend when no one was around to talk to about it. So I mentioned it today to Dixie, Weisburg's PA, and she suggested we get ultrasound since being on chemo as well as having cancer makes Jim prime for blood clots. OK, so off to Brighten Ave. from the Scarborough center with barely enough time for lunch of some kind (no carbo's no sugar what the F#)$ do we do for lunch?) before getting out to Brighten MMC. Thought I lost my wallet, no ID for Jim, no blue card, no insurance card, minor break down on that one. Pull the car apart while Jim is getting ultrasound and ta-da, wallet is in the back under the seat ... phew!! We were told to wait a few minutes for the results. Nope. Now we are told to go straight back to Weisburgs office. Hmmmm, something is amiss. I called Weisburg's office and was told by our angel, Dawn, who answers all our questions and calls in all our RX that yes, come back, there is a clot, they must see Jim and start treatment immediately. OK .... next?!

Back to Weisburg where we find out that the clot is pretty large in that right leg, from the medial aspect of his thigh to below his knee. Yup, BIG clot .... holy shit. We must start Tinzaparin shots to dissolve the clot today and continue these every day for the next 7 days, saturday and sunday included! And on Friday we begin coumadin to thin the blood ... for the next 6 months. No leafy greens. HA!!! Ok, what the hell do I feed this guy anyway now?!?!?!

It's now 3:30 in the afternoon, Jim has not slept, he usually has had 2 good naps by now but he has not slept at all at this point. The entire right side is breaking down and he can barely walk. Dixie asks if we need a wheel chair .... 'yes, please!!'. I'm realizing that I have clients coming to my office starting at 4:00 and it's 3:30 and I'm a total wreck and still at the Scarborough Medical center. I'm a lit-tle stressed at this point and ask permission (yes, you read that right ) to please be able to go out to my car where I have phone numbers of my clients so I can call and cancel the afternoon appointments today ... maybe? YA THINK?!?!!??!

They wheel Jim out to our car around 3;45 and we make it home by 4;00 where Jim can barely get up our stairs and into the house and collapses on the couch. Big day ... HUGE day .... incredibly HARD day and he's exhausted!!!!

Thank you God that Paula was here to clean our house for us today and that Matthew and Todd are here to fix dinner for us and MaryMargaret and Alice are gathering to help eat and clean up after and just help us through the remainder of THIS day. And I must get on the phone to caretakers and Dr. Belanger to find out about supplements and how they must change now .... and they do because the rest of the labs results had come in and he said "It’s too bad we didn’t start the lumbrokinase sooner. The the labs I did revealed that he was at risk for a blood clot (thrombin-antithrombin and fibrinogen were both elevated)". So increase this, decrease that, stop this and that. Ok, got it! NEXT!!!?

Holly schmolly God, I really am not sure I can handle anymore OK? I mean really, give us a break!!! If for some unknown reason you must hit us again with ONE MORE TEST, then let's shoot for next week, OK? And the whole thing with the thought of losing my wallet, well that was just a little over the top and I'm not sure I quite understood that one so maybe next time you don't have to have quite such a full agenda for me. Just a thought!

NEXT!?

Off to bed where I may skip my prayers tonight,

Mary

Hitting the wall

posted by Mary Lello, Wednesday, April 8, 2009, 4:35 PM

This is a phrase that is used a lot for people running marathons, how you "hit the wall" at mile 20 or whatever. Well, I'm not sure what mile Jim and I are at right now but we've been at this for 3-4 months and yesterday I hit the wall. Just cranky and tired, don't really want to talk or tell folks one more time how Jim is really doing. I guess I was low on patience too as I want to see BIG improvements. I want my man to crack jokes again and to listen to the news and then go into a long, intelligent discussion as to what is going on in the world, how he feels Obama is doing and to talk about Opening Day in Fenway.

Jim finished his 'maintenance chemo' on Monday. He did 5 days of chemo with a hit of 400 mgs/day. During radiation he was taking 100mgs/day, thus you get a better idea of just how big a hit the chemo is on this monthly basis. It kicked his ass pretty hard. No nausea but he did lose that great appetite he normally has and had a deep fatigue - needing to nap far more often. When he is fatigued he loses control of his right hand and foot so we saw a lot more of that paralysis happening as well as a lack of mental clarity.

As long as the chemo is doing it's job and knocking that tumor out of the park then we can handle this! I just get a bit freaked out since I still don't know what is on the other side of all this. Do I get Jim back? Will his sense of humor and his quick wit come back? Will his balance and wonderful coordination come back? It is such a huge unknown right now and so hard to accept where we're at sometimes. Most of the time I just keep plugging but when I hit the wall, when I feel that the finish line is just too far away and I won't be able to make it, then I tend to fall apart a wee bit.

But the most amazing thing happened, today I woke feeling hopeful. I went for an early morning run and I felt so much better for having done that. When I got back Jim was a bit brighter eyed and bushy tailed this morning after just one night of no chemo. and he had gotten back on his wind trainer while I was out running. It's the little things that set my spirit soaring again.

We went and saw Belanger last week - driving down in that nasty weather! Most of the blood work that he had ordered was back and so he had a lot to report to us as well as another car load of supplements for Jim to counter act or enhance all that he found with the lab reports. Fascinating stuff really. For instance, cancer cells will use our defense or immune system to it's advantage. Natural Killer (NK) cells that normally are activated to go to a sight of a lesion and to seek out and destroy any invading cells, like a bacteria can become deactivated by cancer cells making the NK cell obsolete - or a NON Killer cell (my term) - but still keep it programmed to call in for more recruits thus calling on the inflammation or healing process our body needs to heal wounds. When this healing inflammatory process is working then new blood vessels will form to help cells repair tissue damage. But the cancer cell uses this entire system to fuel it's own growth by deactivating the NK cells, so the cancer isn't attacked, and using the blood vessel supply in order to keep growing and feeding the tumor.

This is a horribly simplified version of it all but I didn't want to bore you too much. SO, Belanger is able to look at some of the lab work and tell us that JIm's NK cell count is down a bit but those that ARE there are ACTIVE ... this is a good thing! But Belanger wants to raise that NK cell count, or call in lots of recruits, and also make sure they stay active so that they are capable of destroying cancer/tumor cells .... and the crowds go wild!!!

This was just ONE small aspect of all the blood work he had done and we got 3 different supplements to help perform this ONE function in Jim. It's a big one though - but there's other supplements to do other things he discussed with us as well. Another example, Vascular Endothelial Growth Factor (VEGF) is produced by platelets. VEGF is what helps form the blood vessels needed for tissue repair or tumor growth. The miracle drug we've all heard so much about, Avastin, blocks VEGF in the body thus cutting off, literally, the blood supply to the tumor. But there are other factors that help make blood vessels besides just this VEGF and Avastin doesn't affect these factors so we use 3 additional supplements (green tea, curcumin and pomegranate) to inhibit these other growth factors .... and the crowd gives a standing "O"!!

The belief our naturopath has - and I will include my own beliefs in this too - is that our immune system IS capable of fighting this thing. We just have to monitor it and get it back on track because for some reason Jim's system stopped working which allowed the cancer to become the control center.

So, we are doing all we can to fight this thing. We are coming at it from all kinds of different angles and trying to out smart it. Today I'm hopeful. Today I believe we will win this. Today I expect to see Jim moving better and talking better in the future. Today I don't care so much where the finish line is providing I can cross it with Jim.

Loving you all back,

Mary