Moving and Antics

Oh if Megan sees this she is going to probably scream at me for putting this picture on. But it is too funny and reminds me of some of our happier times. Larry was always chasing one of us around with his camera, and I always joked about the kids being his photography victims.

One day Megan went upstairs and used taped to make the grotesque face in the photo after getting out of the shower. Of course Larry HAD to get his camera and take a picture. I have this on my dresser...I know, out of all the lovely photos he has taken I choose this one...but it is a reminder of childhood and play. OK, since I posted this picture of you Megan, I will admit to the world that I sometimes stand in front of the mirror and pull my face back to see how I might look with just a nip and a tuck. I stop short of tape though.

Now there is tape like this I have seen for us "older women" which is supposed to be used for a temporary face lift. HA. RIGHT. Somehow I don't see that working.

Megan went to chemo and radiation today. She told the doc that she had to be ok to pack her apartment and move during the next two days, so they kindly gave her some chemo and the radiation, and gave her pills that she takes every 2 hours for the next 10 hours. Her landlord is making her move out by the first, even though no one has come to look at the apartment. Everything is moving at breakneck speed. I went after work to help her pack, then took Alanna home for the evening and then she goes to daycare tomorrow. She was supposed to get another PET scan today, but because of the expense and medicaid rules that govern how many she can have, they are waiting till next week. I suppose one week won't matter all that much..and the doctor did not seem to be too worried. I have no idea what one costs.....

Off to rummage in the fridge and see what I can cook. Alanna is making me play dough food, but I don't think that will do it.

xxxpatti

FOUND A HOME

Yesterday was a successful day. First of all, my friend Julie happened to call me the other day and I was telling her about Megan's predicament with her housing. Her mom's house has been on the market since the summer, and it has been vacant. She offered it to Megan to live in as long as she pays the utilities, does some work on it, takes care of it, and understands the premise that it is for sale and she will be given a 2 month notice to move.

WHen my children were 3 months and 2 years, Megan being the one who was 2, we had to leave our home. My ex was crazy, a drinker, and started carrying a 45 magnum with him. I won't go into messy details here, but we had to pack my VW Dasher (oh I loved that car!!) and never go back. We lived in the woods for a few months, chopping wood to heat a wood stove to keep warm. It was a temporary residence, and through another friend of mine I found a woman who worked in Connecticut and came home here in on the weekends who wanted someone in her house. That was Julie, and the rest was history.

Then when I was engaged, and my fiance decided after six years that he was no longer in love with me, I had to leave with two kids. Julie was now in Raleigh, and had put her house up for sale. We lived in it until it was sold, and I got my house back from the fiance and the rest is what it is now.

Megan, Will, and I had some tough times. But those tough times had lots of fun and love mixed into it, and it is the past........

So Megan has less than a week to move, but between all of her and Dole's friends, and me and my friends, we will get it done. She will be living in a sweet little house in the woods, with Julies family living in various houses/buildings on the property.

It will just be like coming home.

Patti

PS you can read about last night's fundraiser for the IVAW and Megan by clicking on my blog, EAT MAN DRINK WATER, link to the right. Also check out the IVAW and The Ground Truth links on this site.

Need a New Home

I have been tired, busy, and now sick, and I have not been inspired to do much writing, nor really had the time.

For the first time in four years I did not pay my mortgage by the due date, not because I did not have the money, but because I plain forgot. The taxes are whispering to me, the house is a mess. The cats stand in front of me at stare...wondering if the litter boxes will clean themselves.

Megan emailed me yesterday asking for help in finding a place to live. She lives on an old estate which has a view of the Hudson and lots of land, but the houses are falling into disrepair. The ceiling in Alanna's bedroom has a leak and is sagging. Yesterday there was no heat. She can't ever take a bath because there is not enough hot water or water in general to support all the tenents. The refrigerator is shot and she had to go out and buy one and is having it taken off her rent.

If any of you live in the Kingston NY area, and know of an inexpensive 1-2 bedroom apartment in a good neighborhood or surrounding area, please email me. I think the link to my email is found on my profile page. She is responsible, does not have parties, has a part time boyfriend who does not live with her..he only has one drawer in her dresser, and a 2 year old who needs to be able to run and jump without causing grief to people below her. (once the downstairs tennent ran up to Megan's apartment and started to choke her because the baby had been jumping around!!! The police were called....)

Megan has been upbeat and feeling much better the past 10 days. She is optimistic that she is going to beat this cancer. Though the statistics are not that good, we are going to keep visualizing success and a miraculous cure. Tuesday is another PET scan which will show how she is progressing with the chemo and the radiation.

We always hope for good news.

OH and there is another showing of THE GROUND TRUTH at the Rosendale Theater tomorrow at 3. I will be speaking briefly about being the mother of an Iraqi Veteran, along with 2 members of the IVAW, the link is on my blog. Come on out.

In gratitude always, Patti

Torn

Megan had four or five days of feeling herself again. She was able to eat, she had energy, she had life back in her again. Today was chemo/radiation day, and she was sick again, but not as badly as before. They dropped her chemo a bit since she is getting radiation, and is no longer taking the oral chemo. She was getting toxic brain from the chemo pretty badly, and perhaps the drop was enough to give her a break.

I have been trying to get her to go see a sarcoma specialist at Sloan Kettering. Megan gets very angry with me as she sees no sense in it. Her oncologist is in touch with the director every week, and they are working very closely together on Megan's case. I still think that she needs to consult with a doctor face to face; she refuses.

Megan is at an age where she is too old for me to march her ass down there, and too young (remember---we all thought we would live forever and beat everything at that age...) to have the wisdom that someone twice her age has. When it comes to your health, no one is a better advocate than yourself or your mother. And if you don't ask questions and don't push for answers, you can compromise your health.

Perhaps I need to have faith, but that is tough when you read all the statistics about LMS. I am in a twilight zone......and feel rather helpless in all of this.

The president of New Paltz's Women in Black called me yesterday and asked me to speak at a benefit showing the movie The Ground Truth. I have never kept my opinion of our involvement in Iraq a secret, but I have never spoken in public about it out of respect for Megan during interviews and fundraisers. But I told her today that I accepted the invitation, and will speak from my heart...about the pain of a mother whose daughter went off to bootcamp healthy, at 19 was sent off to war, who came back and has been sick ever since.

May we all have strength and wisdom in this.

Namaste, Patti

Photo by Larry

Megan's Birthday Weekend

Megan has taken off for a few days with Dole to celebrate her birthday. She has been graced with the good luck as since Valentine's day she has felt fairly good. (it must have been my organic food and soup, a fire in the hearth and lots of nurturing that healed her!) She has been able to eat, she has some energy, and I just talked to her and she is off to find a pedicure. I gave her money for her birthday and told her to indulge herself in something really nice. Dole saved his money, and searched on the internet for a hotel with a "spa" room so Megan has been using the jacuzi often just relaxing and healing. They ended up in Manchester, Connecticut. I told her to go to the Wadsworth Antheneum, but I don't think her boyfriend is into an art gallery for the afternoon. It has one of the largest collecitons of Hudson River Painters,or so I have heard.

Yesterday I soothed myself by going up to Olana with two wonderful friends. Olana is the home of Hudson River Painter Frederick Church. It is an amazing eclectic mix of Moorish and Italian architecture. A pic of part of it is on my Eat Man Drink Water blog. Larry and I got married there...Megan was 12 or 13 when she and Larry's neice were beautiful flower girls dressed in plum...parading flowers....over looking the Hudson at sunset on the autumnal equinox. Today's photo is a view from where she started the ceremony.

The air was crisp, the view breathtaking. I venerate that place. We had so much fun and it made me remember to take a step back from all of this and rejoice in what is dear to me. I cannot let Megan's illness darken what I love and cherish, and may Megan also learn that lesson, though I think she is already there.

May your weekend be blessed with friends and good times, Patti

The Spirit of Love

At times my mind is consumed and obsessed with the whole world that surrounds cancer. And seeing cancer and pain in your daughter who is a young mother can be excruciatingly difficult to experience. It takes you to realms of joy and sorrow, love and hate, ranting and praying to our higher power.

But today, all I felt was love and appreciation of the people in my life whom I love and who love me back. I had my daughter home with me for the day; I fed her with homemade nutritional food, kept a fire in the hearth, and a warm bed or sofa for her comfort. She went outside in the snow with Alanna for a little while, and I made hot cocoa when they came in. We exchanged Valentine Gifts, and spent a day of relaxation and caring.

I must remember to cherish these times and keep them dear to my heart. We don't know how much time we are given on this earth, and we must try to rejoice in the each day. It has taken me nearly 50 years to grasp this and to live each day as wonderfully as I can. Out of fragility and pain has blossomed a truer understanding of love, and it is love that will keep us strong.

May love be in your hearts, Patti

I took tonight's photo before Megan and Alanna went out into the snow........

Sad News

The past few days have been difficult. I just came off a week of being an absolute social maniac, perhaps because for a brief while there were no problems, and things seemed to be coasting along well. I had a good time for the most part, though I still felt like I was on an emotional roller coaster.

Meg called me last night and was so ill that I told her to have Dole bring the baby over. She came with, and I was not prepared for what I saw. She had passed out again, and fallen face first on the floor, putting her teeth through part of her lip. She could barely walk from the pain and had to be helped doing everything. I was in shock. We drew her a hot bath and let her just soak in the tub.

Today she had her chemo, colonoscopy, and radiation. They confirmed another tumor and sent the results STAT to Sloan.

I can't talk to much about this right now as I am tired and worn out with worry and sorrow. It is storming out, and I am concerned that Megan will get snowed in on the farm and something will happen. She is supposed to have someone with her; she assured that she would, and I do hope this is true.

As the snow falls and blankets the world in a white hush, I become numb. It is cold in this back room. Perhaps I will take a hot bath and light a candle, and say a prayer.

Patti

A photo Larry (of course) took of Megan, about 10-11 years old, in the beginning of her adolescance.

You're Doing What????

I had to be silly with tonight's title as I am somewhat stressed, but sometimes one just has to get silly and laugh because it is the better of two extremes, and I have put in my fair share of tears, so some humor is my sweetness of the evening.

Megan felt better this week and had a lovely weekend. She called me to make sure that we would all see one another for Valentine's day and we made plans for her birthday.

Then she dropped a little bomb. I joke about it being little, because when she is tested so much and there are so many issues at stake here, you get used to bombs. Sad, but true. Her last 2 PET scans confirmed a spot in her colon. Wednesday morning she goes in for her colonoscopy.

Sooooooooooo.....that was the end of my sunday.
I am going to finish making the Valentine gift I have made for my dear friends and family. I want them to know how much I love them.....I have felt rather desperate in my wanting to reach out and touch people, as if they will just melt away from me.

Life is so nebulous.

Patti
PS This is a fairly recent picture ? taken by Larry. He has made so many beatiful pictures of Megan over the years. Of course, when you have a good model.....

Breaking down Walls

It is amazing how every week brings new challenges, new verdicts, truths, confessions, and finally, absolution to my life.

I am always looking for the deeper meaning and purpose to all of life's pain and try and be honest and open to take advantage of the lessons I need to learn. There is a reason for everything and I try an keep this foremost in my mind. It is the only hope I have at times, and hold onto that with tenacity.

Very recently I thanked Megan for her honesty in being open with me about a situation, and I made a commitment to both myself and to her, not to be judgemental or critical of decisions she has to make for herself. We talked about why she won't let me go with her to her treatments, and I had to understand and accept her desire to go alone. She needs that time to think about her life and her relationships and let the doctors and nurses be the ones who take care of her; she does not want us to see what is done to her; that is a journey she chooses to take on her own. I have to respect that, though I am quite the opposite; I would have to have SOMEONE to hold my hand through it all. She is much stronger than me in that respect (and I am one hell of a strong woman!) She has faced death in the eye more than once, and she has got some grit! (you rock Megan!)

I did some more reading on radiation and its side effects and the damage it can do to one's body. The docs told her that they suspect that her lung/s will scar. I don't know how that will affect her at the moment. We can't predict, we can't project.

Tonights artwork is a crop of a photograph done by Marist College Professor Dan McCormick of Megan two years ago when she returned from Iraq. Marist college staff have been very generous in their support and donations, for which I am very grateful.

Our motto is one day at a time, and live each day to its fullest.

I love you Megan, xxxmom

Hudson River Blues

I mark Megan's treatments by the trips I make the drive along the Hudson River a few times a week . Megan lives on an old farm high on a hill with a kitchen window view of the river.

I watch the ice glaze the surface of the river with a thin, even coat, then over time forming large islands pushed up against the shore by boats passing by. Today the surface is almost frozen over, save for a small lane made by the barges and ice breakers.

I have been obsessed by the cold blue of the river. If I were to become a color it would be the blue of the ice, the color of my grandmother's mints that she kept in a jar,and pool liners.

It is a somber drive as it is heartbreaking to see her sick after chemo and now radiation. I often play some beautiful music, try and think delicious thoughts and not get upset when I see her. Cancer not only affects the patient, but the entire family and its dynamics and psyche. My son has not been around since Megan was diagnosed in the hospital; I don't think he can handle it. I struggle and sometimes feel like I can't breathe with the seriousness and weight of it all.

Today they did another PET scan to carefully monitor the tumor's progress. I bet Megan glows in the dark with all of these scans and poisons invading her body. She was in pretty good spirits today, because she got out of the house for a bit, met up with an old friend, and talked.

It has been hard for the baby too to be holed up in the house in the cold as Megan can't take her outside to play very much. Hence, Larry and I make one or two nights a week "Alanna" night and we have dinner together, build a fire, and as we speak Alanna is playing with a new set of blocks that a gracious friend dropped off for her. She sometimes acts a bit ornery, but no wonder. The scenerio she is in is not optimal for a toddler.

I take a deep breath, and bask in her innocence. I will call Megan later and she how she is feeling.

I am still receiving donations which will keep her home for another month or more. I am so grateful to all of you who have been helping, writing and sending emails of hope and encouragement. We go week to week as they are always testing, adjusting, monitoring. She is on an 8 month course of treatments unless things change. We have made it over a third of the way so far.

Be warm on this cold night, peace, Patti

Summer of '04

This is a picture that was taken by a writer friend of mine who wrote an article for the July 4th edition of one of the local papers. He interviewed us and part of the focus examined what it meant to be patriotic. It touched upon Megan and my political differences, handling it with respect for the both of us. At the time Megan was quite pregnant; her babies birth was a mere one month away.

If we could only flash back to that summer. It was a summer that Megan and I first started the process of healing our relationship, forced upon us by circumstance. Here, again, we are going through another bout of healing, and under a circumstance much more dire than the first. Both were under the umbrella of life; the first time was the birth of a new one, now, we face the possible taking away of a life.

Megan has been pretty sick all week. Perhaps there was a night or two that she actually kept food down. I took Alanna tonight so that she could go out. As sick as she is, she needs to get out of the house with friends and have some fun. I dread next week; she starts her raditation. I face the possibility that things will get worse before they get better. I had a reprieve this week from my intense hormones and was able to secure child care a few days a week for Megan and be there for her while being strong and level headed. I was able to keep my tears at bay for the most part, and had moments where I smiled, laughed, and enjoyed some of life's simple pleasures.

My friends really helped me through this week in many ways, and that is why I am hoping that Megan's friends will help nourish her social soul which she so needs. She talks about trying to find a job; I think it is more out of wanting to have a reason to get out of her house and see other people no matter HOW sick she is than it is having to work. The generosity of people has enabled her to stay home another month (I think..) I am hoping she can get her needs met in other ways as I don't think it is possible for her to keep a job thru chemo and radiation.

Thank you all for getting us through another week. Friendship, camraderie, caring, generosity...all is appreciated and I hold it dear to my heart at a time when I need it most.

A warm peaceful night to you all, Patti