Just the facts, ma'am

posted by Mary Lello, Monday, March 30, 2009, 8:58 PM

As Dragnet use to say "Just the facts, ma'am".

Here they are:

We didn't get great news but we didn't get bad news either. Basically the tumor on the brain stem MAY have grown a little bit but Dr. Weisburg says that could be attributed to swelling that is still happening from all the radiation only 4 weeks ago, so she's not all that concerned.

She wants Jim to begin his round of chemo again this week - not a different plan, one that we knew would be in the long term care with "maintenance chemo" happening for 5 days 1x/month. And she wants another MRI in 4 weeks to see what this tumor is actually doing.

The 'wonder' drug Avastin IS in Jim's future but there is this protocol we seem to need to go through with this next round of chemo, another MRI and then another round of chemo around the MRI time, in 4 weeks. Not sure, and she has not fully answered WHY, we can't start Avastin now but she really will not discuss this with me ... the "protocol is ..." and that is where we are at right now.

So, we are not sure what to make of all this. I was disappointed as I wanted to hear the tumor was greatly reduced. Jim is disappointed as it means our vacation plans to Moab, UT need to be canceled and any vacation needs to be put out ahead to some distant point right now. Still, Weisburg didn't seem alarmed and said all this is how some folks respond to the radiation. Just means we need to be a bit more vigilant and thus we start chemo now and get another MRI soon.

We will also go back down to Dana Farber this month to stay active in that system and let them know where we are so if any trials come up we will be the first in line. But we feel far more equipped to go down there this time. That first time I was in still in shock, Jim still had surgery stitches in his head and we were complete neophytes with all this. We are more educated this time around!

Sure I wish the tumor was gone and I said this to Reg tonight and he reminded me of a man he met at a brain cancer conference in Florida (yes, there are enough folks with this disease to create entire conferences around! Freaky) who had an 'in-operable brain stem tumor' who is now tumor free. It IS possible to beat these things back! There ARE drugs out there now that can do this and JIm and I are now eating a diet for 'anti-cancer' from all the information I've gotten from this book - astounding information and one we should ALL be reading!! - so Jim and I are still very hopeful and not beaten .... to much ... maybe a little tonight but we will spring back and be in fighting form again tomorrow!

So this is the information we've gotten. I wish I could say more but we really don't know much more.

Big day today, emotional and hard in some ways so I am now off to bed!!!

Loved the pictures of Friday night! Thanks for posting!

Mary

A quick note

posted by Mary Lello, Sunday, March 29, 2009, 7:33 AM

Well, THAT was fun! What an amazing party on Friday night at the gallery. What an amazing show that was put up and put on. What an amazing feasting with all the fantastic food and wine. And it all came with drama and suspense with the silent auction bidding.

My niece, Jennywren, stole the show as she would climb a ladder and make announcements and do the count down for the closing of the pictures on the silent auction. People would quiet down just to hear what she would say as she was quick witted, informative and just fun to have up on that ladder as master of ceremonies! Talk about a 'proud mama' feeling!

There is a huge long list of thank you's, which would mean this would NOT be a quick note so I will be doing that on a more personal level. Just let it be known that a gala like Friday night does not happen without a tremendous amount of work and volunteers and .... love. And once again Jim and I were surrounded by so much love. It is just astounding.

And damn, it was SO great to see all of his images up on those walls with everyone falling in love with certain ones that just would speak to you as an individual for whatever reasons. My sister, Jayne, fell in love with the Masai mother and child because she couldn't get over how they were looking straight at the camera .... at Jim ... and she said "THIS is what is your magic Jim, that you capture people in their barest essence, that people all over the world will open up to you this way". She's got that right!

So we thank you all for those who came to the opening, who shared in the magic of that event and fell in love with an image and purchased it for your own home. That is an amazing compliment all in itself! And for those who couldn't be there the website is up and running and you can purchase your image easily on line.

NOW, on a more sober note, Jim has his MRI tomorrow, Monday 3/30 at 9:30 a.m. We will be meeting with Dr. Weisburg on Monday afternoon at 3:30 and get the results of the MRI. We are anxious to get these results and also nervous .... there are a lot of unknowns at this point! I'm assuming we will also hear Weisburg's "plan B" for us at this time.

Our good friends Gena and Reg will come by Monday afternoon to be here to share whatever news we have. They've been down this road and continue to walk this line so we are incredibly bonded to these 2 people and have fallen in love with who they are very quickly. They will be a wonderful support system for us at this moment.

AND, I will post what the results are. So many people have been wishing us the best for Monday and saying ... 'let me know, please!', 'call me, OK?', 'will you post the results?' ... so yes, I WILL post the results as well as any other information we get.

We are so thankful you are all here in this huge circle.

Loving you all back,

Mary

"Cliff hanger"

posted by Mary Lello, Tuesday, March 24, 2009, 7:00 AM

I was told my last post was a real "cliff hanger" by Greg, in Colorado. So guess I need to let folks know how we're doing with the steroids. We've gone up to 4 mg/day and Jim is doing better. We just aren't sure if he is doing as well as he should be doing at this point. This is the hard part of all this, not knowing what is 'normal', what is a red flag or what we just have to accept.

He's still struggling with right sided issues; his hand doesn't always do what he wants it to do, his foot - though not being a club foot now, still scuffs a great deal - and today he was really struggling with word retrieval, which he finds very frustrating.

Is all this normal for 3 weeks after radiation and chemo? Is all this just swelling still going on as radiation continues to cook? Is this what should be happening and there is a far better place on the other side of all this? Man, it's just so hard to know!

I was able to get Jim to my office yesterday and gave him an acupuncture treatment. He seemed to feel a lot better and was functioning better after that treatment. Which felt really good, of course. Heck if that's all that is needed then I will devote all my days to treating him!!

We are scheduled to get the MRI next Monday 3/30 and we see Weisburg again on April 2. However, after calling Weisburg's office I got a voice mail saying she is checking into getting the MRI earlier if possible. Not sure if this means they are concerned with where we are at or if they are just trying to respond to MY concerned phone call yesterday.

All THIS is the cliff hanger for us! This MRI is a REAL cliff hanger!! I want to know but I'm also really scared to find out, if you can appreciate this.

Tune in next time ...

Mary

Being honest

posted by Mary Lello, Tuesday, March 17, 2009, 6:19 PM

People have told me how my honesty in these writings touches them pretty deeply. Well, I have not been so honest the last few days as I have told people Jim is doing "O.K". The truth is Jim really has not been doing well since last Friday. We both suspected it was the fact that he had gone down from 4 mgs. of steroids/day to 2 mgs./day. Steroids are pretty powerful and keep the swelling down in his brain. And the symptoms we are seeing are such a set back - his right foot drags more like a club foot vs the little scuff it was doing before, his right hand doesn't want to cooperate so coordinating getting a fork or spoon up to his mouth becomes a challenge (and can be pretty messy), his balance is way off, his fatigue becomes greater and he needs to sleep even more and he's unable to retrieve the word he wants to say.

He was beginning to do so well before so,needless to say , all this is incredibly difficult for me to see as it scares me so much and feels like we are going backwards and no longer forward.

A good friend who has an office beside mine looked at the calendar and reminded me that tomorrow (thurs. 3/19) is only 2 weeks out from when radiation stopped. It is a 4 week cool down period and radiation continues to work and create swelling in the brain during these weeks. O.K., so breathe a little bit, there IS still swelling and it IS still early in the cool down period. And the doctor agrees that we need to go back up to the 4 mgs/day of the steroid, which we started yesterday.

Still, I have found myself on the edge of tears a lot these last few days. Patience is low, stress is high and I've got to make decisions I don't always feel qualified to make. Feeling pretty beat up, very scared and set adrift as my wonderful, competent man becomes childlike again.

I got an email yesterday morning from a dear friend who we haven't seen in a while as she doesn't live in Maine. She is writing to me from her annual retreat to turquoise waters and warm balmy breezes. She shares her adventures into the depths of that crystal sea with spotted rays and this makes her think of Jim - who has been diving since he was 12 years old, loving that weightless world and the sense of flying. And she tells him how "the translucence of the curious squid who stare with impossibly huge eyes, hovering on little rotor fins" has her thinking of him. And she says to me "You are in the call of a barred owl as I walk to the barn late on a frigid February night, because you taught me who-cooks-for-me. You are both of the beautiful parts of the world that deepen my understanding and enlarge who I am."

She writes not sure what to do or what to say or wondering how she can possibly help. And as I sat there yesterday morning in the early light of dawn I put my head down and allowed the tears to start coming, the sobs that begin in my belly and bubble out with huge sighs to begin to flow. And her beautiful way with words offering love and understanding of who Jim and I are and understanding of all that we are facing now began to wash over me like those gentle undulating waves of blue-green water. And from so far away she sent exactly what I needed - a catalyst for my tears that needed to flow, a salve for my fears and words of understanding of who Jim is.

And once again I am struck by the gifts that come with this, even as my heart is splayed open and so vulnerable, or perhaps because of this.

I've been up early enough to observe the flocks of crows in their daily flight from some unknown roost as they make their way across the pastel morning sky on their way to equally unknown destinations. And I understand that the world goes on as Mary Oliver says in her poem WILD GEESE:

Tell me about despair, yours and I will tell you mine.

Meanwhile the world goes on....

Meanwhile the wild geese, high in the clean blue air, are heading home again. Whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh and exciting - over and over announcing your place in the family of things.

Today is a new day,

Mary

Community

posted by Mary Lello, Sunday, March 15, 2009, 6:08 AM

The pasta social was last night and I just have to share a few thoughts on it. It was astounding, amazing and incredible. Nance Trueworthy did a truly wonderful job organizing this huge event. It is not easy pulling something like that off and this gal did it. I know she had lots of help - and that is just so wonderful too! - but still, it was her idea and she just jumped into the fire and got it rocking and rolling. I should have grabbed the mic from my sister last night and had everyone give a standing "O" to Nance .... but it's hard getting the mic away from my sister Karmo.

(I hope she knows I'm kidding!!)

Jim and I were very nervous about going to this thing. King for a day syndrome. But after the first 15 minutes or so I realized how big my heart was feeling. It was expanding, like the Grinch as he stood on his mountain top listening to all the Who's in Whoville singing, my heart grew several sizes last night as I watched Jim just soak up all this love from every single person in that room. You really can NOT be hugged too much!

So many gifts with all this. Good God. I've had several people tell me that they are so blown away by this community of ours and they wonder if this was to happen to them would they have as much, or a fraction of, the support that we have? And I say, may you find out BEFORE a life threatening disease! But, seriously, what I REALLY say is ... you just don't know and you might be very surprised to find out how much you really are loved.

Maybe the lesson here is to at least ask? People who love you always want to help, to step in and carry some of your load when you just need to set it down for a short while. I'm learning this lesson now. And maybe it's because we really are 'family' animals. We use to travel in large family packs, like wolves, and then we colonized in new lands but still had a huge interdependence on that colony to pull together and act as a well functioning unit. OK, they went witch hunting and shit but still you get my drift, it was very hard to survive alone. We aren't really meant to be walled off from a community and operating from these smaller, tight knit cells that we all operate from now. To tap into that bigger community and to feel the strength of it is so primal!

Last night those of you in that hall could feel this community rallying beside Jim! There is so much power in joining together and working with each others strengths and accepting each others weaknesses and joining hands and hearts to move a mountain .... or a tumor.

I am forced to carry burdens now that I never thought I might have to carry. I can feel so alone in all this at times and wonder what our life will look like a few months from now ... it's hard to think in years just yet ... but just when I feel I can't hold this heavy load anymore 3, 5, 8 people step in and start to carry my burden for me and I get lifted up and offered a shoulder to lean on and I realize we are not alone in all this.

Each and every one of you is creating a single thread that is reaching out and connecting and weaving into this larger web that is offering so much love, support and strength to Jim and I. Each one of you is creating this powerful entity called community. It is tangible, you all felt it last night, you all are a part of it and we are all connected.

Perhaps you felt your heart grow a little larger last night too?

Thank you to the moon and back. Thank you to the ends of the earth and back. Thank you beyond the sky and the earth ....

and loving you all back!

Mary

Sap runs in March

posted by Mary Lello, Monday, March 9, 2009, 5:47 AM

Sap runs in March. It's been my mantra through some of these snow storms and bone aching cold days. And this weekend New Englanders got a taste of spring with temperatures in the low 50's, bare ground showing and I noticed the Swamp Maple buds are swelling.

Sap runs in March. Life is flowing back up into the branches and the buds of these huge deciduous trees, Sugar Maples get tapped and sap houses start steaming as the sweet sap of these old trees gets boiled down into it's amber syrup.

Sap runs in March. Life rebounds and comes out of it's winters sleep. Brain stem tumors shrink, radiation and chemotherapy ends for 4 weeks and we start thinking about phase II of this journey and how to stay a step, or two, ahead of the intelligence of cancer cells.

I've been reading the Anti Cancer book by David Servan-Schreiber, MD, that our friends Gena and Reg sent to us. It is the book they live by now as Reg was diagnosed with a glio last May. It is the book we will begin to live by now too. And although I use to say "hey, it doesn't matter, we did it all right and Jim still gets cancer!" I'm changing this tune as I read this book.

We were at a small gathering of wonderful friends yesterday and they were asking many questions to which Jim and I tried our best to answer them with what limited information we have. At one point one of them said "Mary, you know so much about all this" and our friend Jane spoke up and said "she's on a crash course!". Exactly!! You get kissed by cancer and all of a sudden your entire life is all about learning as much as you can about these defective cells that have been awakened and you want to know WHY and HOW and you want to do everything possible to put them out of commission again.

Every one of us has a healing intelligence within us. It is this intelligence that I work with when bringing people into a state of health through this ancient medicine that uses fine needles.

This same intelligence is capable of fighting cancer, it does it in all of us who do not have activated cells because we ALL have cancer cells in us. So now Jim and I are not only going find and use what medicines there are out there to starve cancer cells that are alive and hungry in Jim's brain but we are also researching how to help Jim's own healing intelligence get a better 'leg up' and start doing the job it can and does so well again.

This has me feeling more empowered. I am a healer and I have felt so knocked downed and dragged out by the fact that my man is sicker then ever imagined and having to face the horrible fear of losing my best friend, my spouse, so early in our lives. But I am being reminded that our body wants to heal itself, and it can!

Sap runs in March - life is reborn, the sun has a different and stronger light to it, and hope begins to flow into the limbs and hearts of all the northern species. And I'm feeling it today. I'm truly feeling it.

Loving you all back with a warmed heart,

Mary

In like a lion

posted by Mary Lello, Monday, March 2, 2009, 5:16 AM

March 2nd and it seems to be coming in like a lion as a snow storm is raging out there this morning. Deal is March is now suppose to go out like a lamb, right? It use to actually be true but global warming has tampered with a lot of old wise tales regarding weather I think.

Jim has 4 more radiation treatments - counting the one he goes to today. He is really into the count down mode and is looking forward to this routine being over. He then has a 4 week 'cooling off' period of no radiation and no chemo and at some point in this time frame we do another MRI to see how things look now. He will then have to go onto a 'maintenance' chemo regime of 1x/month for 5 days with a slightly higher dose.

I'm a little confused with the treatment plan that comes next. Dr. Weisburg's PA, Dixie, told us that Plan B - which Weisburg always has in her head - will happen if this thing grows back. But I looked at Dixie and said 'but they DO grow back, we KNOW they grow back' and she agreed. So my question is, WHY DO WE WAIT FOR IT TO GROW BACK? I didn't get an answer to this. Both Dixie and Weisburg are away this week so we won't be seeing them but certainly we will see Weisburg next week and I do plan to ask her this question. There are drugs out there working small miracles (Avistan and CPT 11) so why the hell would we wait for anything to come back before we start taking these drugs?

I do trust this doctor but I do plan to keep asking this question each and every time I see her. In Maine we have annoying little insects that buzz around your eyes and face called gnats .... that will become me!!

On a brighter note, Jim had a good weekend. Saturday was a beautiful sunny day and Jim wanted to take a walk. I took him to the ski mobile trails where we have always gone xc skiing and trail running. As ski mobile trails they are very hard packed and fairly wide - wide enough for us to walk side by side - and we could bring Ella along. It was also slightly tricky underfoot, though not icey certainly not smooth pavement. Jim did great. We walked up to the power lines where we sat on an old dead tree that was out of the wind but in the sun and took a little rest and then walked back to the car. A good 45-50 minute walk in all. Jim loved it. He loved being out there in the woods again and he even tried running a few steps just to see how it felt.

I had told my friend MaryMargaret about a month ago when we were out there running that "some day I will look forward to Jim being able to at least come and take a walk with me on these trails". And that day was Saturday. A great day.

We also had our friend Mark come and take down the 'day-bed' in the living room for us. Jim has not been using it. Ella loved it and used it all the time and now she walks around where the bed use to be looking a little confused. It feels good to have that out as we now might be able to get some normalcy in our house arrangement again.

I'm struggling with a cold but feeling relieved that it IS just a cold and not the nasty flu bug that so many people are coming down with. Todd got it and we didn't see him for an entire week. He told me he was in bed for 4-5 days and started talking to the T.V. set. Not a good sign! So I'm taking Vit. C ... a LOT of Vit. C ... and washing my hands all the time and hoping that Jim doesn't get this cold too.

And it's time to get the morning supplements to Jim. This regime won't end with radiation. Some of the supplements will stop but there will continue to be the intense schedule of them as well as pretty healthy doses of the ones he will continue to take.

For those of you in Maine drive safely out there today in this storm.

Love,

Mary