Need to put this out tonight

posted by Mary Lello, Wednesday, April 28, 2010, 8:15 PM

I know myself too well. I know I may try to email everybody and simply exhaust myself. So I'm going to make this quick in order to fill everybody in on what's happening .... and then go to bed.

Jim was admitted to the hospital this morning. He was declining really fast. Seems he has a UTI as well as pneumonia. This we don't worry so much about, it can be taken care of with antibiotics. But the MRI shows swelling as well as new growth in new areas of the brain. The Mother Alien is dormant, but she's sent out her children and they are growing. And they are probably immune to Avastin. Thus we will need to add chemo into the mix. But we can't add chemo until the infections are taken care of.

We are now on a 24-48 hour watch to see how Jim responds to the antibiotics as well as the mega doses of steriods to reduce the swelling in the brain. If he responds well we might have a shot at our miracle man being able to regroup. But if he doesn't respond to all this then the prognosis is not good.

I thought we might get 3 years. Doesn't look like we will have that much time.

I'm a wreck,

Mary

Candy Land

posted by Mary Lello, Tuesday, April 27, 2010, 6:15 PM

I've used this analogy to several folks I've emailed today. In the game Candy Land you move along an entire board with candy canes and ladders that, if you land on that special square, will catapult you several squares ahead. But you can land on a square that is a slide then you can slip all the way back to the beginning of the game.

We landed on that kind of square this week. We've gone back to the beginning of this C-game. ALL the way back, or so it feels.

Jim was not nearly as aware today, unable to walk without my assistance or do his morning bathroom routine without me there. I didn't dare brave the stairs alone this morning so he spent the entire day in front of the T.V. watching movies. OK, this could make any one not real "with it" ... but Jim has definitely lost some ground. Me too. I did not deal with this day well at all. If you called us today and didn't get a response I apologize; I could not, should not, would not .. answer the phone and talk to people.

But by the early afternoon I was concerned that Jim was retaining his urine. I called Jerry Sanders and asked for some help. He came right over. He worked on Jim for a long time but we still couldn't get him to urinate on his own so we went to the ER ... again ... sliding back another couple squares that we already passed yesterday. This time Weisburg's office suggested that we go to Brighten as it is "easier and will be much quicker". It was. But thank God Jerry was here because I felt that another ER day would kill me. Take my little game piece, my little identity, and throw it in the fire because I could not imagine going to ER again. And I needed help getting Jim downstairs and out to the car. Jerry did all this as well as sit with us at ER. You know what? No one should ever go to ER alone .. EVER! And if there is a care taker with an individual? Just know that care taker needs someone with them too. I'm blessed to be able to call people and they drop everything and arrive at my door and commit to being here for what ever is needed. Truly blessed and grateful.

I've got amazing clients in my practice as well. I've had to cancel all my clients for today and tomorrow and not only do they say "this is NOT a problem", they offer to help in any way they can. And they mean it. You know, people can just be amazing and I will never take this aspect of humanity for granted.

I am really (really, really really!) hoping that tomorrow is a better day.

And we are, loving you all back,

Mary

ER

posted by Mary Lello, Monday, April 26, 2010, 3:45 PM

Now that George Clooney made ER famous I'm assuming you all know what it means. We spent the entire day in the Emergency Room today. At 7:15 this morning while Jim was in the shower I noticed he was standing there under the stream but something was wrong. Call it Lioness intuition but I poked my head into the shower and realized Jim's head was doing an odd bobbing motion, he couldn't turn it to look at me and was frozen in the spot standing there and hanging onto the shower rail. I turned the water off and got him to sit down on his shower chair. His eyes were vacant, he couldn't say one word and it seemed like he couldn't even see me. Seizure. Shit, shit, shit!!

I grabbed the phone and called the Puelle's. Betsy was amazing, she was so calm and said David had just left to take Eli to school but she would call him. I learn later that David had not taken his cell phone with him as he was just dropping their kid two minutes away so Betsy jumped into her car and tracked him down. David was at the house within 15 minutes. Pretty good team work by the Puelle's!

During that time I was able to get Jim out of the shower as he recovered a bit from the seizure, got him to the bedroom and onto the bed. As I was helping him dress he had another seizure. David showed up just as that one was slowly subsiding. Together we got Jim dressed and decided we would get the wheel chair and take Jim to the ER. While I had run downstairs to collect all needed things for going to the hospital David had stepped out of the room briefly and Jim, being the determined, stubborn boy that he is, stood up to try and walk BY HIMSELF, fell and gashed his head open on a small, wooden chair. He's on blood thinner, there was a lot of blood.

OK, now we call the ambulance. The Falmouth Fire and Rescue is amazing and most of it is volunteer. My neighbor, Barney Schneider is one of the volunteers and another man who "lives just around the corner" got the call so these two drop everything and run over getting here before the ambulance arrives to assist however they can. We were at the ER by 8:00 a.m. and, of course, spent the next six hours there in 'hospital time warp-zone'. David called and cleared his day so he could stay with Jim and I for the entire time. Even though there is nothing really going on at this point and Jim is being CAT scanned, medicated and stapled (6, in that skull gash) it still feels really good to have someone else just stay there with me, to help me make the next decision, to ask additional questions, to smile over at me or shed a tear or two with me while sitting there and ... waiting, and .... waiting, and .... finally getting some information.

The CAT scan showed no bleeding in the brain and, although an inferior image to the MRI, the radiologist said the tumor does not appear larger. This is a really good thing. So they want to check electrolytes to try and discover what might have caused the seizures. Those show to be perfect too. Bottom line is, it's fairly common a year or two after the original seizure to have the medication not work quite as well and therefore have a seizure again. We will probably need to add a neurologist onto our medical team now but until we see him/her we have increased his anti-siezure meds an additional 500mgs.

Life in the fast lane, the big C-lane, the never-a-dull-moment lane, the how-much-more-can-we-take lane. But we're home. Jim is wiped out and on the couch but every time he wakes he looks a little brighter eyed and more himself. We were told he should feel much better tomorrow and continue to recover .... and I pray that we get back to the baseline he was at before today.

One more thing - there was a beautiful framed photograph in our ER room today of a huge tree with ground fog hovering over a field in the background. I was captivated by this photograph .... I read the information ... Nance Trueworthy! That brought a smile to my face for a moment.

Loving you all back,

Mary

"What's bad is good"

posted by Mary Lello, Saturday, April 17, 2010, 5:45 AM

The Sunday after the fund raising dinner Jim and I joined our friends the Cochran's for breakfast. When we returned home I got out of the car and noticed a small flock of Seagulls harassing a huge bird directly overhead. Eagle. I pointed the Eagle out to Jim who saw it immediately. As we watched this bird another one appeared and the gulls seemed to just disappear. These two Eagles then floated on some unseen air current directly over our heads. They circled in so close we could see their eyes. Nobody spoke, we all just stared at this amazing spectacle that was lasting far longer then I've ever experienced. I whispered into JIm's ear "send your prayer with them, they take them directly up" ... and, yes, I sent my prayer with these majestic birds too. After stating the prayer they both flew off out over the bay.

Judy Cochran looked over and said, "wow, that was amazing!" And indeed it was.

In the book Broken, by Lisa Jones, she documents the story of an Arapaho man, Stanford Addison, who lives on the WInd River reservation. At the age of 20 Stan was in a car accident that left him a quadriplegic and bound to a wheel chair for the rest of his life. Stanford spent many years trying to kill himself until he finally settled into his, initially, unwanted gift of spiritual powers. He is now a well known medicine man and astounding healer.

Stanford Addison tells Lisa "what's bad is good .... it helps you find your center..." I've thought about this quote a lot. I've said it to myself many times when I've collapsed on the couch or crumpled into a heap on the floor ... if this doesn't help me find my center nothing will I guess. But there is a change happening, there is a shift and there is a centering that seems to be going on within me.

Stanford says about Eagles, "they carry the prayers up; they hear and see the help that's needed; they see real clear man, they see almost right through you .... they're looking at your soul, not your body". Yes, the day the Eagles circled us this quote was in my mind and I truly felt that Jim and I were being "seen".

Jones writes of some of the teachings she learned from the 5 years she spent visiting the Arapaho reservation and spending time with Stanford Addison: "to bow to the unknown, to honor the mysterious interconnectedness, to see the only way to security [is] through surrender."

I surrender. At times I am forced to let it go, to bow to all this unknown that has been heaped upon us and to trust that the Universe is watching. And honestly, I feel that power at times. I do find that when I let go, I receive what is needed. I struggle with the security part but I certainly honor the mysterious. When Eagles soar over Jim and I how can I NOT honor that .... and send my prayers with them for the help that is needed here in this little spot on earth.

Loving you all back,

Mary

Sunny Day Fund

posted by Mary Lello, Thursday, April 8, 2010, 7:00 AM

Most people try to stash away some dollars for a "rainy day fund" for retirement, when the furnace blows or disability strikes. Well, I don't ever see myself able to retire but disability has struck so I do stash away the dollars. Whenever a client pays me cash I take that money and put it into an envelope ... after taxes of COURSE! It's sacred and I try not to touch it. It builds up pretty quick. I call it our "sunny day fund", for those times when life has Jim down so low that I know he needs something to look forward to. And for Jim that means traveling. So this stash of cash is for airplane tickets.

Nance Trueworthy had told me to take some of this money collected from the amazing fund raising dinner and do something fun. Nope, that's not what I see those dollars for. Those dollars that you all so generously pooled together for us are for a REAL "rainy day" ... when the furnace DOES blow or the car makes funny noises or whatever. I'm so incredibly grateful for all this help for JIm and I since I am only able to work part time now and it's just not making it - to be honest! So the generosity of our community is simply a Godsend to us, a cushion that has me feeling a tiny bit more secure in being able to keep this house and pay the astronomical insurance premiums. There are no words to thank all of you for this.

This web you have all woven around us is truly something for all of us to feel power from. And all of you should know, if disaster strikes you (God forbid!) that this is YOUR community too. This web we've woven connects all of us, supports all of us now. In an era where the tribes have disappeared we have woven our own tribal web of love.

So, Jim and I are heading to Northern California on May 9th for 10 days, returning on the 19th (care takers, take note!) There is an entire village out there excited to have us come and willing to do what is needed to care for Jim; taking him for hikes in the hills and sit with him while he naps. This same village is made up of trail runners, cyclists and gals who like a good margarita and pedicure so I will have company on my much needed outings. Our friends, Pete and Nikki - who will be our hosts - have a pool so there will even be some bobbing around in the water and relaxing pool side. In addition Stacie lives out there and Donna will come for an extended weekend from Colorado so that the Daniels can gather. Definitely something to look forward to.

I'm still nervous about flying solo with Jim but I booked these tickets with the thought "I've got to face my fears". My dear friend Maureen, who is part of this California village, was going to be here for the dinner but when I told her we were coming out she changed her plans. Originally from Rockland, ME. she plans to come back May 1st to visit family and then .... ta da ... fly back out to CA with Jim and I! My stress just got busted in half!!!

Another girlfriend from Maine, Ronda, has moved out to Oregon. When she heard we would be in the same time zone she wanted to get down to California to see us. When she heard of my stress in flying home alone with Jim (and a five - yup, FIVE - hour lay over in JFK) she booked a flight to come back to Maine and return with us! She says "I'm your sherpa for the day". Stress just taken down to almost nil.

May everyone have the kind of gal pals that I have!

When Jim comes into the kitchen for breakfast and I see the tears on his cheeks I start to talk about California - he'll smile and says "yes, yes, yes".

Sunny day fund, yes, yes, yes.

Loving you all back,

Mary