When I am Alone...

I posted this picture on my own personal blog this past sunday. It was Earth Day, and I celebrated it wearing the reality pinching t-shirt from Aveda that read "Every 15 seconds a child dies from a lack of access to clean water." I thought about the brilliance of thought and progress in technology over the past 100 years, and how abhoring it is that anyone should die of such a cause. I thought about all the people that die from diseases that we could cure if being sick was not such a money making business in this country.

And to boot...the war in Iraq is costing us more than just the lives of our soldiers; it also is costing lives back home with the cuts in funding for cancer research and help for our sick.

Back to sunday...Larry and I went to Megan's where we had a simple and fun barbeque complete with fire pit and marshmallows. It was a beautiful day in the woods, and Megan, Alanna, and Dole seemed to be perfectly at home and happy. A few burgers, a few beers, magical flaming hot chocolate powder thrown upon the flames. Photos, laughter, serious talk about Megan's cancer and the other problems she is having.

When I am alone, which is often, I bury myself with art,baby and school. I book dinners with friends, a movie, . Yet there are the nights where I choose to be alone all evening, and I sit in my studio, and listen to sad cello and lonely piano tunes while making art and musing on the state-of-the-nation and the state-of-my-heart.

Tonight I am melancholy. My sadness drips into dark dark places. I do not fear them because I know that love will give me light in such times. It is the one thing that I know is true.

Off to try and find the Bill Moyers show on Iraq...........

Megan is a Survivor

Megan is a suvivor; it is not the first time that she has faced death in one form or another. One split second, one weak piece of metal, one piece of metal or glass piercing a bit to the left or to the right.

As a mother I have had my heart terrorized several times.

Megan had a been given a chance to have a modeling career. She was spotted by a scout in a local store and did test shots for Ambercrombie and Fitch. A famous photographer had offered to fly her to the coast of France for a summer to shoot her. It took one afternoon on a back road with a drunk driver broadsiding Megan's boyfriend's car. He and is friend were ok, but her seatbelt broke, and she broke the side window with her face. She had hundreds of stitches all over the head and face, broke her scapula, and months later was still having surgery in NY to have glass removed. She still has scars, and never got her skin resurfaced to eliminate a majority of them; she could not deal with any more pain and trauma.

Then she was driving her Jetta home from a long distance Army drill. Something happened with the accelerator, she lost control of the car, and hit another car at a high rate of speed on the thruway. She called me from the side of the road where she was lying, barely able to breathe. She was rushed to a hospital in Poughkeepsie for testing and observation overnight. Thank God she did not have the baby...and thank God her injuries were minor. The airbags saved her, and I have to admit, that Jetta held up pretty darn well considering.

She was blown out of a humvee, and got a shrapnel wound in her leg.

The problem is, all these accidents, a year of 65 lbs of equipment on a 115 lb frame has taken its toll on a 23 year old.

Yet she survived, and continues to survive. Her last PET scan was clean. Next week is her last set of treatments. They are giving her meds to try and heal her ulcers. She will be given a three month reprieve before she is tested again.

There are all kinds of stats out there. Average survival rate for LMS is 72 months. 60% metastasize. But there are stories of survival rates breaking all stats, and other remedies that may help that are diet and supplement related. I hope Megan does all that she can to try and beat the odds. Proper diet, no heavy partying, doing all that you can to be healthy. Learn how to manage stress. The problem is, at 23, didn't we think we would live forever?

Thanks my readers for being faithful to this blog, and for the comments and emails you send to me time to time. It has kept me going.

Now Alanna needs her mommy back. She is doing some acting out, and I don't know how much is typical bratty 2+ year old behavior, or how much of it is fear, anger, frustration that her mommy's been in bed sick and unable to do much. I hope the next few months will give them more quality time together. Megan needs a job, and she is going to start looking for one once she is done recovering from her last round of treatments. Her housing is tenuous, the property is under negotiation, but all we can do...is take life ONE DAY AT A TIME.

Enjoy this beautiful weekend, Patti

Soggy Northeast

I got a phone call yesterday from one of my best friend's mom. I went to school with Wendy since 7th grade, and we have celebrated each other's weddings, (2 for each of us) consoled one another through divorces,(1)and helped one another through death, as both of our father's have passed on. Her brother Gary, is back in the hospital from a reoccurance of his cancer. This is his third bout fighting this disease.

It was difficult to call her mom and talk to her. I am still raw from the past six months of emotional upheaval in many areas of my life from the threat of losing one's child. Yet we could now actually understand one another's pain, and talk about it. Erna has been in the hospital herself three times in the past six months and has many medical problems. She is doing all she can do to try and keep herself together through all of this. I kept strong as she needed that.

I still need to call Gary, and that is another difficult call I will have to make. He has been in the hospital for two weeks now and starts radiation tomorrow. Please keep Gary in your prayers and meditations.

Megan was pretty sick a few days this week, actually so sick that her boyfriend stayed home from work to take care of her. She is lucky to have him. So many might have fled.

I had Alanna a few times last week. She is becoming quite the active and intense 2 year old. I have to let her go through her fits, and am very good at being able to make a crying face smile by changing the topic at hand that has precipitated the meltdown. As long as she is not overtired, she is pretty good.

In the next day or two I am going to be posting a few websites I would like you to visit, and places where you can make donations for LMS research etc. I have done so much reading about this, and due to the cutbacks in the government funding for cancer research, much of the money has to be raised privately. I will post more on that soon. (thanks to Mr. Bush and Iraq, our money is going elsewhere)

I hope you are warm and dry; as we speak my studio is flooding and there is nothing I can do. Larry is seeking out a wet/vac to see if there is any hope of diverting what might be a major problem.

Patti

PS In a humvee in Iraq, a photo taken of Megan holding a picture of me in her hand. She carried that polaroid in her helmet all through the war. When she told me that I broke down and cried. It still makes me cry if I think about it too much.

Easter

I so needed a break from my life which has been pretty intense for the past six months. The emotional and physical stress that one goes through when faced with a life-threatening illness takes its toll after time. I don't know how Megan has been as strong as she has. She has youth on her side, and perhaps I have given her the gift of strength through example.

The five days away has given me new life, and I got back in time to spend Easter sunday morning with Megan, Alanna, and Dole. We dyed eggs, had a hunt and at a big fat breakfast which included bacon, which I have not cooked in forever. Even Larry, who does not eat meat, agreed that the smell of bacon and eggs gives the house a cozy warm ambiance.

Each holiday I am thankful for my health and my time with my family. I was glad Megan could eat and enjoy the morning with us. It is always joyful to see her smile and be able to have some fun.

I met another mother online whose 25 year old daughter has the same disease. She has multiple spots showing on her scans since her major surgery to remove the cancer......my heart goes out to her. I know that I will never rest knowing that this cancer can come back at any given moment in time with a vengence, but I focus on healing and health.

We have to live a day at a time, a moment at a time, and make each and every one count. I am thankful for the fullness of our lives, and the love that I have found in those around me.

Thank you all for your kindness and staying in touch.

A healthy spring to all! xxpatti

PS Alanna holding her chenille pipe cleaner chick that I got in a fab paper store in Sausalito---you KNOW I had to check out the paper store when I was there!!!

Update from Marin County

I am writing from Sausalito where I am visiting one of my best friends, Bardet. Bardet and I have known each other for 15 years, and she has been a great inspiration in my life. We have taken care of each other in times of health and illness, and she welcomed me to her bayside world to come and heal my heart and head.

I called Megan this morning, as it was her treatment day. The good news is that they are taking her off the liquid chemo and just giving her pills for a month. They will finish up the radiation, and hopefully at the end of the month..she was be done with the treatments.

I keep telling her and others to focus on her being the 10 percent that beats this horrid cancer.

I met a woman on the plane who runs an apartment complex for visually impaired adults in Chicago. We talked about our careers, and somehow got onto the subject of my children. I told her about Megan, and before we got off the plane she graciously donated money for Megan.

I am hoping that shortly after her chemo she can spend a bit of time getting herself back on her feet and then find a job. That in and of itself will be a challenge for her, but I think she will be happy to get back into a routine and some kind of life other than the walls of her bedroom or bathroom.

I am sending you the cool breeze, smell of the ocean, and some sunshine to light your world my child, and know that I love you from 3,000 miles away. Xxx mom