Megan Aid

Remission and Knee Surgery

2010-07-18T16:22:00.000-04:00

It has been a long time since I last updated, but I owe it to my readers who check in periodically to report on Megan's progress.

Megan's treatments for the GIST tumor were completed a few months ago -radiation and chemotherapy. I traveled to Kentucky twice in order to be able to take care of her and her family. Her husband was still in the states, but I went because I knew it was difficult for him to face deployment, take care of two children, and sit and watch his wife lay on the couch sick from the effects of her treatments. I could be support by cooking, playing with the children, and helping wherever was needed.

The photo that I posted sums it all up. But she has survived round two of cancer, and is once again in remission.

Then at the end of June, she had to undergo surgery for damage to her knee, which was probably a result from her service in the Army, which included jumping out of planes. There is also a cyst on her femur which has weakened her bone, necessitating a bone graft, but that is for the future. The knee has to heal first before this secondary, less painful surgery can take place.

I spent two weeks being nurse, cook, grandma, and whatever else was needed, then flew Alanna back with me to NY. We had a wonderful time, and I flew her back here where I have been for several days. This time not for illness, but as a guest.

I fly back to NY tomorrow, and I have to say, after a month of being responsible for others, I am looking forward to being alone, working in my studio and my house. I can only hope that she has a long spell of good health and that future visits will be ones in health, not in sickness.

Patti

Status Changed

2010-03-13T19:55:00.002-05:00

A quick blog.

Though my daughter prefers to keep things quiet, part of me wants to shout out about cancer because there are so many of us touched by this rampant disease.

Megan's cancer has come back. However, the doctor's think that perhaps she was mis-diagnosed here in Kingston. Instead of leiomyosarcoma, they think she has GIST (gastro-intestinal stromal tumor) which is also a sarcoma, but a stain identification away from LMS.

What does that mean? It means that the first chemo was the wrong chemo.
It means that the radiation probably was the element that worked to keep her cancer free for nearly three years.

The tumor is in her esophagus. Inoperable. The chemo is by pill this time, better than an IV, but still has nasty side-effects. Megan is now going through radiation, with the hopes that it will destroy the tumor - in time for her husband to pack up and leave to go back to Afghanistan.

I don't know how she does it. I think the children keep her going, her college classes keep her focused. But still questions of "what if" surface.

I went for five days to help her out, thanks to a generous contribution of my co-workers who gave me a card with enough money to make a round trip flight to Kentucky, 1000 miles away. I cooked, I played with the kids. Megan and I got some quality time to talk, eat, shop, and just be together. It was quality and loving time. I am grateful for my friends who helped make this possible.

I am going back in a few more weeks and this time I will be there for what we hope to be her last round of treatments. I want to say FOREVER, but forever is a slippery slope in the land of cancer.

Keep her in your thoughts and prayers. Her babies need her still. I need her still. We come from tough stock...with the blood of Northern and Eastern Europe.
We fight hard.

To the NEW YEAR

2010-01-06T16:51:00.004-05:00

I don't know if anyone reads this blog anymore, but I intend on keeping it up.

I know that my daughter will never be healthy; the best she can do is live life to its fullest at any given moment in time.

After all the brain scans/tests, she found out that she has brain damage from one of her accidents. It has affected her short and long term memory, but at least it is not a brain tumor (which the doctors feared) and is getting modifications for her college work; extended time for tests etc.

Her lupus is back. It seems it never really goes away. First I had to educate myself on LMS, and now Lupus. At times I just stop looking things up as it can make me crazy.

She, Dole, and the children have been up for the holidays. It has been wonderful spending time with them, even though it has only been for part of their stay. She has two sets of sets of relatives to visit, and her husband has so many more than on our side of the family. And they have friends too! However, I am grateful for any time I get to spend with them, thought it really reinforces why women my age should NEVER have young children.(my arms and back are killing me from lifting Randy a few times-the little chubber weighs in at 27 lbs!)

Here are photos of the children,and of Megan, Larry as Santa, and my son Will. I lost the one of her and Dole..think I have to go back to the camera to get it off again!

Dole heads back to Afghanistan this summer. I try not to think too much about it, and how it will affect the children to lose their daddy for another year, or about the toll it takes on my daughter who is in poor health. Or for him..having to experience something that is less than desirable in life, and be separated from his family for long periods of time, living in a hellish place.

My vision in 2010 is that all my sick family and friends find health, and if not optimal health, strength and love to help them get through. My own work is optimizing my health while using the least invasive and chemical methods.

To you all....
A peaceful, healthy, loving 2010

patti

Updates

2009-09-28T19:41:00.003-04:00

When someone you love dearly has cancer, each time they get sick or experience an ache, it wrenches your heart. You never rest easy as you know how insidious cancer is, and it becomes an ever present shadow that quite never goes away.

Each time Megan has a test I get worried, though the doctors think that as long as she keeps her lupus at bay, they can keep the likelihood of metastasis at bay.

Lately she has been having severe neck pain, tunnel vision, and had knocked herself out cold from hitting her head on things as her vision is skewed. The doctors were giving her muscle relaxers etc., but not giving her the necessary tests to show what is wrong. With her history, I see that as gross negligence on the part of the medical doctors.

Finally, after crying and telling them that she can't do this anymore, and that the medications are not working, they gave her an x-ray. When she called the office today she was told that there is something definitely wrong and she needs to come in for a CT immediately and the doctor needs to see her. Well HELLO---she has been telling them that for a long time!

We wonder, is it an inflammation of an old injury, or is it a tumor?

I tell Megan to keep positive, that by thinking too much will only make her crazy and not change the outcome in the end and to believe in the power of positive thinking/the law of attraction.
But I also told her that I would be thinking the same thing, and how very hard this is for her.

It is a shame that the doctors don't listen to their patients, and prefer to give them drugs rather than look for alternative options, and LISTENING to your patients should not be one of the alternative options. Maybe because it is the military/government, they are tied in with the drug companies, which keeps the big money machine rolling.

I don't know.

So, I will be writing more when I know more. Like with anything else in life, it is a moment at a time, and I do my best to BE in the moment. And breathe.

Patti

PS Megan and Randy..a few months ago

Long Time

2009-07-17T11:26:00.003-04:00

As I sit here at my daughter's desk, checking my email and facebook, I realize that I have not posted in forever.

The children are wonderful..I had Alanna for a few weeks in NY, and flew in the other day to return her. Randy is almost a year old, and a very busy little boy.

Dole is home from Afghanistan, and family life starting to settle in for them.

Megan's LMS is still in remission, but her lupus is not. Recent tests show she is having another flare up, so she is back on her steroids.

One of Larry's co-worker's teenage son has LMS. He is very sick, and I guess his is in the hospital, doctor's trying to manage the pain from the tumor on his face/neck.My heart aches for the family, knowing how difficult it must be, and it is a reminder all the time of how anything in life can go awry -a reminder to keep filling my toolbox with resources and tools to get me through the difficulties that I KNOW lie ahead. At times I feel like I tiptoe through each day, breathing a sigh of relief when I make it through unscathed.

I leave for NY tomorrow and look forward to going into hiberation for a bit in my paint cave to color my world, and recharge, coming out periodically to visit a friend, or feel the warm sun and the wind blow through my hair.

I won't see my precious family for another several months; perhaps I will fly south before the snow sets in. I am reluctant to fly, especially after last winter's plane crash north of me in Upstate New York, unless I get a windfall of money and I can return sooner. I have discovered that at times it is cheaper to buy 2 one-way tickets to Nashville, rather than a round trip.

May you all have a fab rest of the summer, no matter how rainy or stormy it may be----sort of like a metaphor of life.

patti

Spring Update

2009-03-06T18:53:00.002-05:00

It is almost spring, and maybe I am pushing it, but the clocks change this weekend, we are starting to get above 32 degrees more so than not, and I can see some of the dirt from my garden underneath the snow.

We have made it through another winter, through the little earthquakes, and come out of it relatively unscathed.

Megan has been diagnosed with systemic lupus...a long time coming. Too bad she had to get so sick and be in so much pain in order for them to panic and order more tests, but at least it has been done.

I bought her in for testing before she entered the Army (or was it after?) and the docs brushed her symptoms off as fibromyalgia and said there was nothing they could do. Come to find out, her lupus could have been the cause of her cancer; a normally healthy body tells the bad cells to stop making more bad cells, but a sick body may forget to throw that switch.

Megan has gone through a round of high dose prednisone and suffered its ill effects.The docs have lowered it now, and she is feeling much better.

Life is tough being a single mom while your husband is off to war....I wish that we as humans could figure out how to live in peace and solve conflict without war, and that all religions could live in peace.

As the light grows stronger, and lasts longer, I look to the sky with a smile and feel the stronger sun upon my face. I am grateful for every day that me, my family, and my friends live above the ground.

M E R R Y C H R I S T M A S !!!

2008-12-26T19:44:00.003-05:00

I am blessed to have spent another Christmas with Megan, and her TWO lovely children.

We are ALL blessed.

We have done our best this holiday season to transcend family rifts, to soothe hurt feelings, to mend the damage of the past, to rejoice in the gift of life and love.

Here is a picture of Larry holding Randy. He was fussing, and Larry rocked him and plopped his pacifier in his mouth, and we rubbed his head. Instant sleep.

Tonight Megan is going out with her friends, and Larry and I are babysitting.

I feel like I have not had enough time with working two jobs, the holidays, and being sick, to spend as much quality time with everyone as I would have liked to, but I am glad for what I have had.

I hope your holidays were blessed too...

Patti, Larry, Megan, Alanna, Randy and Dole

Living a Day at a Time

2008-11-29T08:48:00.004-05:00

So I posted PET scans negative, but it is not still easy breathing.

The doctors want to biopsy said "scar" tissue to make sure that is what it is.

Her blood tests came back with a positive ANA which points again to an auto immune disease such as lupus, rheumatoid arthritis or some other problem.

She has to go for more testing, but not until she gets back to Kentucky.

In the meanwhile, we will enjoy the holiday season as much as we can, and periodically sweep away the shadows that are cast over our joy from time to time.

Alanna bought the flu with her, so Thanksgiving got canceled in my house as I have been too sick to go anywhere or to cook. Thankfully, Megan went to her grandmother's house for dinner, as did my son. I have eaten very little in three days, but am now on the mend I hope. Megan and the children all have some kind of cold, but they have the energy to keep going. How they do it, I don't know.

Thanks to all of you who follow this blog and have left comments, even if they have been ones that have left us still wondering....is she ok? To be forewarned about this cancer is to be prepared and to go forth with as much knowledge as we can!

HAPPY THANKSGIVING READERS!

patti

ps Photos of Megan's beautiful children :)

Results

2008-11-16T14:17:00.002-05:00

Good news...PET scan is negative for cancer. Shows scar tissue, but Megan can breathe another 6 months.

They will be arriving here on the 24th for a month. I am excited and busy with the stripping of all the bedding and washing it, chasing out the dust bunnies and vanquishing the piles that accumulate in ones spare rooms. Alanna will have her own room, which was Megan's, and Megan and Randy will share the room which was Wills till it became Megan's when she had Alanna some 4 years ago.

I still have to shop, buy diapers, put in for the 1/2 a personal day to pick them up, remake the beds. I am sure it will all come together at the last hour.

And honestly, I don't think they will care HOW it looks as once they are here Megan will say, "there's no place like home".

Till then!

patti

Another Test

2008-10-30T06:56:00.002-04:00

I am on google search alerts for anything written about LMS, whether an obituary, a doctor's article, a blog. I have read a lot of stories about hope, treatment, struggle, and sometimes death. This morning I read about a 35 year old woman who just lost her three year battle with LMS. A tear slid down my face, sad for her, her new husband, family, and co-workers who had to say goodbye to her. She was too young.

Megan is on year two. She just had another PET scan yesterday, long over due since she got pregnant and the last one done was about 9 months ago. Spots appeared on the scan, but they are hoping that it is scar tissue from the tumors which will show on such a scan.

She won't get the results for a while yet, and the doctor whom she is dealing with is away anyway. Megan is going to visit a friend, and I told her to have a great time, that there would be nothing she could do at the moment anyway if the spots were more than scar tissue, so live it up, and do a lot of laughing. Be in the moment.

I will be back in a few weeks to post the results. In the meantime we all live, love, and laugh as much as we can.

Happy Halloween!

patti

Recovering

2008-10-10T09:55:00.003-04:00

I am here with Megan post surgery. She can't lift the baby for a week or so, nor do any chores. She has just moved for the third time on base. So much for promises that they would not move her with an infant.

Amazingly she has nearly unpacked everything. I will help with whatever is left for the next four days.

Alanna was overjoyed to see me, though she cried herself to sleep because I was spending time with baby Randy. I will give her lots of one on one time today.

It was not a leiomyoma, something very different. But no cancer in the tumor, so that is good.

Here is a photo of Megan and Randy, in dim, early morning light without flash.

Thanks to all of you who send her prayers and your love. It is essential to our life.

patti

Leiomyoma without the Sarcoma

2008-09-19T12:15:00.002-04:00

A few weeks ago Megan had some problems, so she went to her OB/GYN doc. They took one look at her cervix, and immediately took a few biopsies to be sent off to the lab.

During the two days that they were being examined, all kinds of things raced through my head. I really try and not go there, as well as tell Megan the same thing. Enjoy the time you have, all of it. You don't get it back.

I am getting better at following my own advice. Each moment is precious and I enjoy it as it comes, without it getting clouded with "what ifs". I realize there are too many variables to think about how the future could be, so I work very hard in not going there.

Megan has a leiomyoma, WITHOUT the sarcoma, so what that means it is a benign growth.
No cancer.

She still needs surgery to remove it, and she probably will never have another baby, but she has been blessed with two beautiful children as it is.

I leave on the 9th for Kentucky to help out after the surgery, and then fly back on the 14th. I only have to take 2 sick days because we have two holidays---it all works out ok. And, I got another child support check from my ex, so I have the money to fly...plus a few extra bucks to spend on the kids and Megan.

Till the next update,

Patti

PHOTOS

2008-08-18T10:14:00.003-04:00

Here is a photo of my fabulous grandchildren. I love them so very much.

Stay tuned for more info in the future. Megan has some tests in the next month and we hold our breath.

In the meantime, we live each day to its fullest.

The weather in Kentucky has been fabulous, the sun shines strong and we all rejoice in the simple things here. Cooking three squares a day, playing Yahtzee, sitting in the yard.

And it is good.

Patti

Heading Out

2008-08-15T06:57:00.003-04:00

Larry and I are leaving today to visit Kentucky,driving this time, with both Ms. Garmin and my trusty atlas. It is an adventure, that is for sure. We are taking the Honda as it is packed with hand-me-downs from my sister for the new baby. The Eos would be a lot more fun, but it holds just enough luggage for us! So I will miss my CD player and satellite radio, but I will have to deal.

My mom is in stable condition, though I am not sure she will recover. I suspect this is a sign for me to leave, that she is stable, and I have told her I will see her when I get back. If not, I have spent good time with her and she knows I send her off to the next life with love and kindness. Meredith will go over a few times while I am gone to check on her and hold her hand in place of me, a priceless gift from a friend.

Dole leaves tomorrow for Afghanistan first thing in the morning, and we will miss him as we won't roll into town until late afternoon. At the very least I can pick of the puddle of what is going to be my daughter, dry her off for a few days, and get them back on their feet before I have to head back east.

Patti

Worth 1,000 Words

2008-08-08T23:28:00.003-04:00

Here is Megan, Alanna and Baby Randall, and a picture of daddy Dole holding his son. They are home and all is fine tonight. I will head down wednesday as long as my mother is holding out. Otherwise I am not sure what I am going to do. I take it one day at a time and have to have trust and faith in what is in store for me.

I think they are all beautiful and I surround them with love.

patti

BABY IS HERE

2008-08-06T21:35:00.003-04:00

Megan is an amazing young woman. When I think of all that she has gone through I shudder. There is so much that I can not tell, and much that needs to be told.Out of respect for her I censor my writing.

Some of the things she has had to endure from 18-24 has been

ARMY boot camp (AUGH!)
being a diesel mechanic in Iraq
pregnancy in that country and army field medical care
the birth and raising of a child w/out the father
diagnosis of leiomyosarcoma
other disorders/some of which are directly related to serving in a war

And now a miracle baby conceived after chemo and radiation.

For two months this baby has been trying to come into the world. Megan has been in and out of hospitals during this time and on two months of bed rest. Then today, on his due date, the midwife broke Megan's water, and Megan birthed Randall Crain Jr. into the world at 3:48 pm at 8 lbs 4 oz, and 21.5". Daddy Dole was there for the labor and birth, he helped deliver his son, cut the cord etc.

Dole has been a good man for my daughter, and a good father to Alanna.
(I say a prayer for him as he is heading back to Afghanistan for a year, please keep him in your thoughts.) I am so grateful to him for being there for them all.

Alanna says her brother is a big fat boy, and very cute. I laugh.

Again I thank you all for coming to read this from time to time. Knowing that there is empathy and genuine love and caring helps me through the tough times. Though I avoid drama, at times I feel like life is one big soap opera, with mine just a bit more surreal with unbelievable true stories that make you say "WTF?" (my favorite acronym of the year I think)

xxpatti

Still Holding

2008-08-02T12:56:00.002-04:00

A guick note from the Cape.

Megan still pregnant, if the baby does not come by her due date,the 6th, they will oblige her and break her water so that Dole can meet his son and spend a week with him before he flies back to Afghanistan.

We are driving down on the 13-23rd, whether or not he has left. It will be the only time that we can visit them during the summer.

Any moment now I await the phone call saying Baby Boy Crain has graced us with his presence.

Will be reporting back soon!!

Patti

Tempus Fugit

2008-07-10T09:51:00.002-04:00

Things have been pretty much the same from when I last wrote.

Dole got sent back from Afghanistan, and for several weeks managed to keep Megan flat out in bed on complete bed rest, and take care of Alanna while running the household. I am so grateful to him for that!

Megan did go back into the hospital again about a week ago as once more she went into labor. Once more then shot her up with horrid drugs to stop it. They are keeping her till Monday, then they will release her and if she goes into labor they are not stopping it.

Little baby Dole Jr. is over 6 lbs in utero, and by now his lungs should be well enough developed so that if she has him, she can take him home and he won't go to a neo-natal unit. The medications have made her quite sick, her pulse races to 140, she gets severe headaches, and she is moodier than hell (can we blame her?)

She has been very depressed however, as she thinks that a day or two after the baby is born, Dole will be sent back to Afghanistan. What I am to say to that? She knew the life of the army when she married him, that he would be deployed when she got pregnant, and that she would be raising her children on her own for long bits of time. All I can tell her is to take it a day at a time, and trust in the goodness of the Universe/God, and keep myself strong to be able to give to her as much as I can.

I am on call to head to Kentucky when she goes into labor, and Larry and I will stay a week or so to help out. I am not sure what will happen after that. In the mean time, my navigation system has arrived from Amazon, and I am going to take it out of the box and see if I can figure it out.

Till the NEXT time, Patti

Pregnancy Update

2008-06-07T16:21:00.003-04:00

Much of Megan's pregnancy has been fraught with complications. It has not been easy, but Megan is strong and this new life to be has kept her going.

I recently returned from a visit with her and Alanna in Kentucky, where she had her baby shower. It was fun, relaxing, and always good to be with my girls.

However, Megan is in the hospital as she went into labor. She is 30 weeks pregnant or so, and the doctors are keeping her in bed and trying to stop her delivering the baby until after Sunday as they have given her shots of steroids which help the baby's lungs I believe. He is over 3.5 lbs so his chance of survival this early is good.

They have given Megan a shot which lasts for 72 hours to stop her labor, but has come with a host of side affects.

BUT in all of this the good news is that the ARMY is sending her husband home from Afghanistan. Amen to that.

Alanna is staying with her biological father and his family in the meantime. The situation is unique, and thank God Megan has them.

We take things one day at a time, sometimes one moment at a time. I have faith that all will work out, and constantly reassure her that all will be well and little baby Dole will have an excellent shot at survival.

Megan laughs and says it is harder for her to keep this baby "in" then actually giving birth.

I believe it!

Keep the baby and Megan safe in your thoughts,

patti

Dance Light as my Heart Lays Under Your Feet

2008-04-30T20:48:00.004-04:00

It has been a month now since I have last posted.

Megan has had some physical problems. Her cervix is still thinning out, though the baby is now about 1.5 lbs. and could survive if he were to be born now. Megs is taking hormones to stop labor as much as possible, and the doctors are monitoring her every week with sonograms.

She had to have her throat cauterized as it was bleeding, and at night time bleeding into her lungs. The docs think it is from her hiatal hernia (which she may have gotten from being blown out of a Humvee in Iraq from an explosion) which is exacerbated by her pregnancy, complicated by the radiation she had. No painkillers, and for a week she was pretty uncomfortable.

I will be heading down there in three weeks to see my girls again. Dole is far far away in the mountains of Afghanistan and can only call home once a week. No Internet in the mountains either.

Megan had to move, and may have to move again. Hurray for the glories of on-base housing, but I won't get into that.

The photo tonight is a piece that I am entering in a show called "Touched by Cancer". This piece is called Hope for Megan, and tonight's blog title is a verse from a poem I found in an antique book. I cried while making both this piece and the piece for my father, but it was OK as the tears soothe the pain and they are tears of love.

Patti

Show opens saturday night at Backstage productions in Kingston NY. Email me for more information.

The Girls Are Good

2008-03-31T20:31:00.004-04:00

I had a wonderful visit with Megan and Alanna. How could I not? They were both thrilled to see me and we had a fun time cooking, spending Easter together, having a hunt and dinner for the kids and all the girls whose husbands have left for Afghanistan. In addition we went shopping, went to see Horton Hears a Who (FABU movie by the way-----so wonderfully done!) and I spent lots of time potty training.

The trip is always an adventure, but for the most part I have met really cool people on the flights, and I know how to take good care of myself on long layovers. I feel like quite the world traveler, considering once I had a travel phobia.

Megan is having some problems with too many Braxton Hicks, and her cervix appears to be thinning out. Thankfully, she goes to a specialist in Nashville every week who is paying close attention to her situation. They are not suturing her cervix yet, but that may come.

I am entering two pieces in an art show hosted by an Oncology Group in our city. I want to support them as they treated Megan with the most amazing grace and caring. I will post pics at a later time.

Photo of Alanna on Easter day, doing her egg hung. (ps Hmmm....pic not loading???)

To cure, Patti

Heading South

2008-03-16T21:21:00.002-04:00

I have my ticket and am heading to see my girls for Easter. Dole has left, Megan is very sad, so Ms. Mary Poppins will make a visit and try to sooth and bring joy to their lives.

I am looking forward to warmer weather weather there, and praying that no tornado alarms sound. I am not liking the dangers of that part of the country. It makes my studio flood look like a sneeze vs. the flu.

I promise I will take lots of pictures, and am sure I will have some stories to tell.

Megs has a visit with the oncologist next month just to touch base. So far her blood has been normal, and her cholesterol and blood pressure super low.

Remember my friends...each day of life is a gift.

That is a lesson I learned this past year.

More after I get back!

patti

It's a Boy!

2008-02-24T09:45:00.002-05:00

Another monthly update on Megan.

She is doing well, is at 16 weeks, and they have discovered she is having a boy on her recent sonogram. I tell her she has a million dollar family now, one of each, and she can quit.

She laughs, and says oh no, he won't be the last. Silently I think she is nuts, but perhaps she herself will decide 2 is enough when she has to take care of them on her own, when Dole is deployed, or sent on various missions and trainings.

The pregnancy has not been that smooth as she has been having frequent migranes, still getting sick (I think her immune system is not quite up to par yet) and ended up in the ER last week for severe stomach pain. The docs took as many tests as they could, and said the blood work was negative for cancer, and that they are thinking she has gallstones. She has a scan on the 6th, and this week has an appointment with a doctor in Nashville who deals in high risk pregnancies. So far her cervix is holding out (it did not behave for Alanna....)and we keep our fingers crossed. New York is a long way from Tennessee......

Dole leaves for Afghanistan in two weeks, leaving behind his family. In some ways I was hoping that Megan had to be on bedrest, so that he could stay behind. But things will play out the way they are supposed to.

I suspect I am going to fly to see them in several weeks during my Easter break. I have not surfed for prices yet. I hope I can find a flight for less than 300.00. I hate flying in the winter as the weather is so unpredictable, even in mid March. Last year we got a huge snowstorm the weekend of St. Patrick's day.

Will be back with more posts as I get news, and say a prayer for all those in your life who do have cancer, that they will have love,strength, and support through it all.

patti

Little Baby Crain

2008-01-22T20:37:00.000-05:00

I have not been great at keeping up with everything, but here is a picture of Megan's little baby at about 10 weeks. Soon she will be over the dangerous time where she can miscarry..a fear that she had since she had to have a PET scan done early in the pregnancy.

The docs say mom and baby are doing well. Mom has a lot of migraines, but they have given her some medication for that. She will be transferred to a hospital in Nashville for high risk pregnancies as she had problems with Alanna, possibly necessitating a cervical cerclage.

Alanna is excited about the baby, and we are all hoping that she will be TOTALLY potty trained before baby X enters the world.

Every day I rejoice in their good health, and every day I pray for a miracle that will keep Dole home with his family, instead of wandering around Afghanistan. I keep saving my child support for future trips to Tennessee to visit the girls when they are alone and lonely. Then Mimi Poppins will show up with a suitcase full of magic and always brimming with hope and love.

patti

An Announcement

2007-12-30T12:05:00.000-05:00

I have waited a long time to post this as Megan and Dole did not tell their entire family till the holidays.

It is a miracle, but Megan is pregnant!She was about to undergo testing to see if her eggs were viable after all the chemo and radiation. I guess those tests will not have to be performed as she is closing on 8 weeks pregnant. She had a PET scan done early on in the pregnancy, which does put her at a higher risk of miscarriage, but so far so good, and the test was negative.

She cannot be tested again until after the baby is born as it is too high a radiation to do 2 more scans. So we hold our breath, take life one day at a time, and hope that all goes well.

We all had a delightful holiday; lots of joy, love, family, friends, good cheer. We did not have a lot of time together, but what time we did have was spent in great joy.

No longer do we take anything for granted--that is the great gift that has come out of cancer. Each day is wonderful, time together cherished. I no longer feel the need to worry about the little things, as in ten years, most of the little things won't matter at all. Megan and I rarely argue, and if we do, it is a matter of a short amount of time before we revisit the issue and talk it out.

It is hard to believe that at 50, I will have two grandchildren. I look forward to the adventures ahead.

The only thing that worries and saddens me is that Dole leaves in March for Afghanistan and Megan will be alone. I am saving my money from my long overdue child support that has been coming from my ex, for the trips ahead to Tennessee/Kentucky. I am sure I will also be taking Alanna for some time in the summer....the blessings of having the summer off as a teacher.

For those of you who read this, please say a meditation or prayer for my friend Gary who is dying at home of cancer. He does not have much time left on this earth. My visits to him have been wonderful....though death is never an easy thing to deal with, I am learning about love, grace, and comforting those who have touched my life.

So much to learn, so little time.

Patti

Can't Wait!

2007-12-21T23:18:00.000-05:00

This is a photo Megan just sent of us when I went down to visit her in Tennessee at the end of October. I snagged it from her Myspace page to post it here. Thanks Andrea for the great photo, and Megs, for sending it!

I look awfully young in the photo...wondering if my friend did a little touch up on me, or if it is me au natural.

Megan and Alanna are due to arrive here momentarily. I can't wait!

Meg's PET scan last week was again negative, which gives us great reason to celebrate!

And more to come...soon, very soon.

patti

Coming Home

2007-12-13T19:22:00.000-05:00

Megan and Alanna fly in next Friday for a week. It has seemed like forever since the last weekend of October when I went to visit them.

I have stripped the bedding, cleaned the sheets, and re-made the bed in preparation for my girls. Dole still does not know if he can join his family for their first holiday together. He is slated to leave for Afghanistan in March, and has been in various places of training for the deployment.

I just envision peace and wisdom over them both, and know that I cannot change a thing, that everything that happens is part of all of our collective and individual journeys.

I haven't asked Megan about her latest scan. I figure I will know right away if anything is bad. Right now, we are in the rejoicing mode, in preparation for the celebration of friends and family.

And I shout to the heavens, to the trees, rocks and fabulous mountains, THANK YOU.

Patti
The amazing photo of Megan by Larry of course...an 8 x 10 taken in our dining room.....

Kingston Daily Freeman Article Link

2007-11-11T21:14:00.001-05:00

It has been a while since I last posted. I have been to Clarksville and back. It was a wonderful trip to see both of my girls.

Megan has some various issues, mostly physical in nature. A hiatal hernia which needs repair (from getting blow out of a Humvee??? I think that is perhaps what she said, but don't quote me)and some other visits to various doctors.

It makes me nuts to think about how many things are wrong with her, but she comes from strong blood, and we did a lot of laughing, game playing, movie watching, shopping and cooking...and jeez, and I was only there Saturday and Sunday!!!

I have more stories to tell, but other blogs to write.

Here is the link to the article written by our local paper. They wrote about Megan last January or so, when she was undergoing chemo and radiation. Today was a follow-up for Veterans' Day. Interesting article. It always hits harder when it is so close to home.

I talk to her almost every day. Sometimes it is hard. Sometimes it is silly. Sometimes it is sad. But it is always with love, and that is all that counts.

Patti

PS Photo done by my amazing friend Judy Esmond. She can be found through her website, or give me a holler. She photographed Megan's wedding, and the photographs are amazing and artistic, all that we could have wished for. Thank you from the bottom of ALL of our hearts!!!!!

Goin' to Clarksville

2007-10-18T20:43:00.000-04:00

It has been too long since I have written. School has kept me busy, but not busy enough to keep me from missing my two girls, and yes, my new son in law. Out of sight has NOT meant out of mind.

Between email and phone calls, we have been able to keep in touch frequently.
It has been nearly two months since I have seen them, and I made reservations to visit next weekend -- so Tennessee, here I come. Are ya'll ready for me?

Megan lives in Clarksville, which is about an hour from Nashville, and a stones throw away from the Kentucky border.

It is ironic that she would live in Clarksville, as her last name was Clark, her father's name,----a name which I so quickly and desperately rid myself of after my divorce.

I am going alone as Larry and I both can't afford to go--but they will be here in December and we will all be together again for a while. After that I am not sure what they are going to do. Dole is being sent to Afghanistan after the holidays, and Alanna's dad just left for Iraq a few days ago.

Once again there are people who are intricately woven into our all of our lives who are being put in harms way --- for what I ask. Someone, give me a vision so that I may make SOME sense of all of this......this endless and senseless war!!!

Megs has not been feeling well. She thinks maybe she has had food poisoning for the past week, or some virus has been invading her body, but she has made a doctor's appointment nonetheless. We both don't even want to think of the possibility of it being anything else, but we both know that we will never be free to NOT think of it being the cancer.

Yet I focus on our upcoming giant girls sleep over, where all is light, laughter, love, and tons of white light.

Patti
Photo of 8/25 wedding...in order, me, Randall (Dole) and Megan.

The Times They are a Changin'

2007-10-04T21:47:00.001-04:00

It has been far too long since i have posted.

I miss Megan and Alanna so far away in Tennessee. I will be booking a flight this weekend to go and visit in several weeks. I really don't have the money, but I trust that the universe will provide it in some form. A rebate, a long overdue child support check (heard the ex is working..he owes me 100,000.00! Amazing, eh?)
some good art sales.

Things are changing as I write however, and in a few days I will tell more.

The times, they are always a changin'.

patti

Happy Birthday Alanna

2007-09-09T21:56:00.000-04:00

Today was our send off party for Megan, Alanna, and Dole, and it also happened to be Alanna's 3rd birthday.

We had it at one of the local parks which had a lovely view of the Hudson and wonderful rolling hills, neatly manicured. It was the only park left for rent on a Sunday afternoon, and probably one of the best parks TO rent with the views and country setting.

Dole leaves in the next day or so for Kentucky. When he gets there he will find out more info as to his deployment to Iraq. Hopefully it won't be right away. If it is, Megan is going to set up house in the Hudson Valley, as it does not make sense to move far away with Alanna, and have no husband, no friends, and have to find a new oncologist and medical care to boot. She has quite a support system and boy is she going to need it if he is sent to Iraq, perhaps harder for her since she has been there and knows what a hell hole it is.

Well, things always work out the way they are supposed to, so once again I have to turn it over to God/the universe and trust in its workings.

Patti

Test Results!

2007-08-28T22:53:00.001-04:00

I need to post other pics for the wedding, but news flash, Meg's test results are back....She looks good!

She will have to find an oncologist in Kentucky, so we are on the search for one, as she needs scans every 3-6 months.

The doc said she has lots of scarring from the radiation, and she and Dole may never have children, and they can harvest a few eggs and test them.

I think she is still in the healing mode, and not well enough to consider getting pregnant. She knows she has been blessed with Alanna, and like I always tell her, things happen for a reason, and perhaps Alanna was a gift, even though she was not expected (remember---in Iraq, birth control shots left in sun..some girls got pregnant as they were no good...)

A picture of Megan during rehearsal. A self portrait of her toughness on her arm done in Germany. The other which you can barely see which is fairly recent states:
Only God can Judge me.

Poignant, and true.

Till the next blog, Patti

Rehearsal

2007-08-26T12:11:00.000-04:00

This is a photo of Megan after the rehearsal trying on her dress. She looked oh-so-lovely in it.

The wedding was lovely. Very very hot, but we all survived. The church was one of the most incredible places I have been in. Gothic interior, groin vaults, pointed arches, and it's wood construction was like being in a large ship or ark!

I will be writing bits and pieces about the wedding over the next few days, and of posting photos as they come in.

Megan had her PET scan earlier in the week and will get a call soon to tell her if there are any cancer cells in the tumors or other hot spots. The 5 year survival rate is about 50%, so lets pray for some good odds this time. It would be her greatest wedding gift!!!

Patti

The Bridal Shower

2007-08-19T18:02:00.000-04:00

There was plenty of food, and a nice intimate group of girls showed. The bridesmaids, a few relatives, and some of my friends. We played silly games, drank mimosas, had delicious homemade dishes, and four hours of a fun party, complete with three energetic toddlers.

Megan looks good. No, she looks great. It is wonderful to see her Julia Roberts smile light up her face. She has recovered well from her treatments. Hard to believe that three months ago there were times when she could hardly walk.

I pray each day that she will be well. I think of how important this wedding is to a young girl who does not know what life will deal to her tomorrow, or the next day, or the next month. We will never be able to be at 100% peace knowing that cancer can knock at her door at any time. But the joy of her wedding, the excitement of her starting a new home in Kentucky with her husband and child surely must count for having a positive effect on her health.

Till the next time, a tired but happy mom.

More News

2007-08-07T23:54:00.001-04:00

The summer is flying fast. Wedding plans starting to take form and somehow I know it will all pull together fine. I think Megan is flying by the seat of her pants on much of this, and I am helping out when asked, or when needed.

I have my dress...it is a splendid gown. It has been a long time since I have bought a dress like this, and it is a bit surreal that my daughter is getting married.

Her fiance just got his orders and they will be in Fort Campbell, Kentucky, a bit of a ride from the Catskill Mountains of New York. I had to recheck a map of the US to see where Kentucky is. The weather maps still list it as the "northeast". Hmmm...

I am still in disbelief that they will be so far from friends and family. I think they will be in for a bit of a shock. Dole says Megan will have to work just to buy me plane tickets. I hope the area is nice. I don't have high hopes that a Military Base is in the lovely rolling hills of Kentucky, but maybe it is.

Time to do a bit more research.

It is the same base that Alanna's father is stationed. How strange for all concerned. * I am humming the Moody Blues..."isn't life strange......"
patti

Wedding Plans

2007-07-19T08:49:00.000-04:00

It has been a while since I have written on this blog. I have been enjoying summer vacation, traveling, relaxing, trying to release the stress of the past 9 months.

Sometimes I wonder if my constant traveling is the need to run away from it all. When I am on the run, I know that no one can find me to ask me to do anything, or else I am too far to help. At times I feel desperate to put it all behind me and to keep running. Running and work keeps me from thinking of the possiblities that the future holds. I know I need to find peace right in my own home and within myself; perhaps that is the biggest challenge I face.

Megan is getting married August 25th in a small church in Ellenville, with a barbeque at a local gun and game club, the same one that I had my reception in when I married Megan's father. That seems so long ago, another life that I wish I could forget.

I hope that her marriage is far more joyful and peaceful than my first and that they can survive the difficulties of navigating through a relationship at such a young age. I worry about the both of them being young, with so much facing them, but I have to remind myself that they are on their own journey.

They still don't know when and where they are going as Dole has not received his orders yet.

Megan has another PET scan on the 24th, the day before the wedding. She is asking that her results be held till after the wedding. I can't blame her. If they are not good, she does not need to ruin her day, though I am sure there is always a shadow of fear that follows her around. At least she will have insurance, though I am not sure how good the government's TRICARE is. I do not hold much esteem for anything the government does these days, and they already have established how poorly they treat our soldiers. Let us hope it is all good as there is no money to cover any medical expenses for her.

Will keep you updated as time progresses. May your summer be joyful and rejuvenating, Patti

Summer of '07

2007-07-08T09:22:00.000-04:00

I have welcomed the end of the school year as the last 8 months have burned me out; the trauma of Megan's diagnosis, her treatments, the baby, keeping up with school, trying to have something to give to my family (mother in nursing home, two aunts who are not well, a son who is struggling with mental and addiction problems and entrenched in denial...) and run my art business and make art.

I have been working hard on trying to get my house together as it has so long been ignored, to make art and to enjoy life; at trip to NYC dedicated mostly to art, an upcoming trip to the cape dedicated to my girlfriends AND art, time with my husband who has forgotten what it is like to have a wife at times.

Megan and Dole are getting married in August. I have mixed feelings about marriage, especially when they are so young, and I see some things that make me question "will it work?". But I also must let it go and let them find their own way. They will be moving out of state and I think Megan is going to be in for a real shock when she realizes she can't call mom or grandma to take the baby overnight so she can have a social life....or when she is sick or no longer has patience for a 2 year old.

I also worry about her health, but I have to let that go too. She will have a PET scan in August, and we pray that it will be fine.

So this is the summer of letting go, of enjoying the beauty of my gardens, the northeast, and the gratification of working in my studio or landscaping my yard.I look to each day with a sense of joy and appreciation of life, and the fact that I made a wise choice in choosing a career that gives me time to recharge. I worked hard to get there, and work hard all year, and reverently bask in the beauty of each day and being my own boss in the summer. Each year it hold more meaning and more appreciation of life.

And there are my friends...

I will write periodically to keep you all posted about Megan, and still need to post some site about LMS.

Patti

More Updates....

2007-06-24T09:38:00.000-04:00

I have been posting very sporadically here, which for the most part is good because that means things are going at an even keel. Megan has another PET scan in August and that will show the status of the tumors.

She is still working at Mohonk, and plans on marrying Dole and leaving town as soon as she can set up house at whatever military base he is assigned to.

Personally, I think they should live together for longer than the 7 months they have before they consider marriage, but you know, she has to live her life the way she sees fit. I don't know how she will do as she is leaving her entire support system behind her, and I am sure Alanna is going to miss her family very much. I know I will...as they have been a very intergral part of our lives for three years.

Dole will undoubtedly be shipped off at some point to Iraq. But we can alwasy hope for miracles. I have to remember the principles of Al Anon...I can't control anything, all I can do is focus on the things that I can change, and find a place of peace in all of this.

It has been one of my biggest challenges, letting my children go. Well, letting a lot of things go, but we won't get into that. It has been hard but I am fortunate to have a great therapist, to have art as therapy, and am willing to do that work that it takes to find peace and love. And, I have wonderful friends and a husband who accepts me for who I am (for the msot part). I guess I can't ask for more.

I will check back in from time to time and keep updates going. I have the summer off so I will be working religiously posting to my Eat Man Drink Water blog, and am starting one "Catskill Paper" which is purely about art. I need to run separate blogs in all of this as I love to do my daily musings, but also want to keep writing about art.

Thanks my readers for hanging in! patti

The Bearer of my Joy

2007-06-12T23:06:00.000-04:00

Megan has been busy, I have not talked to her much. Life seems to be going back to normal, yet it never quite does. Pain still lurks, the upcoming PET scan brings the dreaded "what if". I keep praying that we will beat statistics.

We go on a day at a time. We enjoy the love and innocence of our grand daughter, and I can't think about their leaving.

I know at some point in time we are going to have to discuss this as I know Dole is probably going into the Army full time and they will move.

I worry. About Megan, about Alanna, about her cancer. I don't want to let either one of them go, but I must.

My other blog talks about how innocence soothed the scorpio in my today. May her innocence also bring joy, love, and healing to my daugher's life and give her the strength she needs.

Keep her in your thoughts. All your prayers and meditations have gotten us through a very rocky eight months, and for that I am eternally grateful.

A photo of Larry and Alanna tonight after our pasta dinner. She loves him so much.

In joy, Patti

QUICK catch up

2007-06-05T23:38:00.000-04:00

This is really quick and I don't even have a photo to post, but it has been a while since I have posted and I owe you all a quick blog.

Megan is working up at Mohonk 20 hours a week as a valet. I can't imagine any place nicer and more beautiful to work for the summer. She is easing her way back into the workforce as she has no more money and is feeling well enough to work part time for now.

Her next pet scan is in 2 months and so far she is feeling good. She still needs a hip replacement, but she does not want anything done right now as she needs to recover from six months of feeling horrid and being dreadfully ill.

We take it a day at a time. It is a relief to see her feeling better.

No news on when she may move, nor on Dole's deployment. He is still away...being trained in the deserts of California. What torture for her.

I keep hoping for a miracle.

xxpatti

Going Back to Work

2007-05-19T16:38:00.001-04:00

I have been remiss by not posting for a while. I have not been much in a writing mood as of late, and come to think of it, today is the first day in a while that I have even entered my studio. Time, time, time.......

Megan went to a job fair at Mohonk this week. She cannot work full time but needs money to live on as she is not making it and fund raising has come to a halt. That is ok as she needs to get out and get back into the swing of things again.

She interviewd for a valet job up at Mohonk Mountain House, which if you don't already know, is one of the more magical places in the world. My friend Bardet always said there were magical powers up there. (photo is a digital piece I did of the Mountain House and Spa)

I hope she gets the job as it won't be too hard on her physically. She won't have to lift too much too far too often, and if she smiles nicely, and is charming (she is already beautiful) she should be able to make some good tips. I do hope that she will be able to pull this off.

She still needs a total hip replacement, but she is not up to doing that yet. I don't blame her. She has been through enough for now.

Dole is away for three weeks for desert training for his reserve unit. (you do know what that means...) He is going or considering going into the Army full time. I wish I could get him out, but he would never listen to me, and never do it. We need a miracle of some sort to happen.

In the meantime Megan is missing him and I have a feeling I will be seeing a bit of her over the next 3 weeks.

Till the next time, Patti

Tremors

2007-05-09T21:34:00.000-04:00

Tori Amos put it succinctly in her song Little Earthquakes. The refrain sings
"Oh, these little earthquakes
Here we go again
These little earthquakes
Doesn't take much to rip us into pieces

I have moments when I can breathe easily for a while. Just when I get optimistic, something comes along which takes the breath right out of me and twists my stomach and heart into a knot."

I know that Megan never breathes easily. Panic attacks from the stress of all her illnesses invade her life. I know she is strong, but my heart aches knowing she is in pain, and has been facing a life of doctors, needles, poisons and drugs.

Though her chemo and radiation are over, I think the fear of her cancer returning lives deep. It does in me. The doctors are now talking about bilateral hip replacements as her cartilage is shot and she is in constant pain. She does not want to live on painkillers. They still don't have an answer as to why. Megan said it would take more invasive testing and she has not up to this point wanted to put herself through it. I don't blame her.

She is only 23.

She is still planning on going with Dole, where ever he is sent. My heart turns ice cold when I think of it. I can't right now.

I still try and keep optimistic, and just need to get through days like this when I feel our worlds could come crashing in at any moment.

I don't like feeling so vulnerable.

This is a photo of Megan almost three years ago when she returned from Iraq and was pregnant. We went to visit a good friend who had three very cute dogs. That summer was a nurturing time to help heal her and keep her healthy and calm while pregnant. I can remember that summer with a huge warm smile.

Keep the soldiers in Iraq in your meditations, thoughts, or prayers, for many of them are just young kids in deep shit.

patti

On Being Mary Poppins

2007-05-05T09:05:00.000-04:00

I usually don't repeat what I write in my personal blog here, but sometimes my personal blog crosses over with this one. Though the main function of this blog is about my daughter's cancer, progress and treatments, it is also about how cancer and illness affects other people in the ill person's life. And sometimes about LMS, the cancer itself.

I have been away so I have not talked much to Megan about what is going on with her medically. She is having insurance problems so she has not gone yet for the MRI's that the orthopedic docs want done. She is still seeing the oncologist as they are trying to fix her blood which is out of whack (I don't know details) as well as the stomach ulcers which did not heal during her chemo and radiation.

Her boyfriend is considering joining the ARMY full time and if he does, there is talk of her and Alanna moving with him. I worry about that. I can't even talk about it without getting upset and sad. So I won't right now until I know more.

But while at my sister's helping her and her family as she just had a little baby boy, I composed this blog, and I am cross-posting it.

On Being Mary Poppins

"Practically perfect people never permit sentiment to muddle their thinking." --Mary Poppins.

I was in the bathroom at my sister's house doing my routine of massaging in my face lotion, brushing my long hair, applying the little bit of makeup that I wear...and suddenly I felt very sad. I put down my brush and stared off into space in the tiny bathroom thinking about Mary Poppins, and how I felt like I have been popping in and out of people's lives, fixing things, making people laugh, nursing them back to health, loving them, making magic, and then leaving. (or as in this case, perhaps having THEM leave..)

I cried a few tears thinking about new life and how death lurks near, about illness and health, and how I have tried to make things better and how love has given me strength, joy, and wisdom.

I wondered how Mary Poppins felt when she had to leave the people who's lives she had touched and changed?

I had come to my sister's house, befriended her animals, had a wonderful time with her 12 and 2 year old, kept up with basic house cleaning chores like keeping the sink and dishwasher empty, organizing toys, doing some transportation, and did a lot of laughing.

After Mary came home with her baby, we all had lunch together and I knew it was my time to leave. Peter had to put the swing and bed together, Helena needed time with her mother, Mary need to nurse the baby and take a nap. I knew it was time for me to head out onto the highway again and gain strength for the next life I might pop into.

Is that why Mary Poppins had to leave? To recharge for the next event? Did she too shed a tear before she took off?

Before I left I told them how I felt like Mary Poppins, and how I was sad to leave. They were sad too, but my sweet niece said "but Mary Poppins always comes back"....and with that I smiled, got into my car, and drove off with a smile.

And here I am, on the highway, shooting out the windshield of my car......welcoming the greens of spring, the mountains on my journey and thinking about whose life I would next pop into for a bit.

In magic, Patti

I am a Rock

2007-05-02T09:37:00.000-04:00

I have not written for a while as I have been incredibly busy preparing for conferences and to get away to my sister's home in Pelham to help her while she is birthing her little baby boy Alex. She has a 12 and a 2 year old and needed someone here to pick them up/drop them off to various venues, and to be one consistent variable in their life over the next several days.

I am thrilled to do it. A change of scenery, joy in the birth of a new life. Getting to spend some quality time with a family whom I don't get to see often enough. I adore them all.

My boss yelled at me when I told her I would be taking family sick time and said STOP HELPING OTHER PEOPLE. She meant it in the best of ways as she knows how difficult my life has been. But the one thing I have learned over the past six months is that I will give up everything to help my family.

15 year ago, when my children were young, and I was a new teacher, I dedicated my life to my career, not taking time off for things like their school plays during the middle of the day. I made the ultimate sacrifice figuring that I had made a committment to a job that needed me and I had an obligation to be there. What I learned later on, was that it meant very little to the supervisors; there were no medals, no recognition, no thanks. I lost precious bonding moments with my children and missed events that probably meant a lot to them. I cannot bring those times back, but I can put them first before anything else from now on.

These days I am the rock in my family. For my daughter and granddaughter, sometimes for my husband, for my invalided mother, and other close family members and friends when necessary. I am proud to be the rock, to be a woman of strength and fortitude. I am learning how to recharge so that I can maintain strength, but also when to recognize to step away and let them grown into their own pillars of strength.

I have some time off in between my responsibilites here which will enable me to catch up on my blogs, post the links about LMS I am promising you all, and to give strength, wisdom, and love. I will update you on Megan in the next blog.

When I am Alone...

2007-04-25T20:37:00.000-04:00

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

2007-04-21T08:07:00.000-04:00

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

2007-04-15T18:09:00.000-04:00

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

2007-04-09T21:31:00.000-04:00

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

2007-04-03T13:38:00.000-04:00

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

Everything Happens for a Reason

2007-03-28T22:13:00.000-04:00

I still get the shivers when I think of this. Megan had been sent to Iraq. I worked 24/7 in order to keep sane during this time. I was making art, teaching art, selling art. I was accepted into a group art show that was being displayed in Cologne, Germany.

I had put in for a week's leave of absence WITHOUT PAY to go and see my show and partake in the ceremonies and was planning on visiting local schools and see how they taught art. My school denied me the leave. I had been there 10 years and I was devastated. I had a place to stay and had been studying German in preparation for this huge event in my life. It was the one ray of light in a world filled with fear and images of death haunting me in the free moments I allowed my mind to wander.

I was angry, bitter, and I remember crying from a spot inside my heart that was bottomless and full of pain. I had given my soul to my job, never asked for anything, and they told me the students needed me there, so I was denied my request.

Then I got a call from Megan. The Army had granted her a weeks furlough home. It was during the week I would have been in Germany.

I felt like I just had experienced a bolt of insight. Things happen for a reason. Often you may not understand it, or know why it happened for a very long time, but there is indeed a reason for everything in our lives.

I know that even more so now, as Megan's cancer has radically changed our relationship as mother and daughter..in the most positive of ways. No matter the outcome, we are learning to love, respect, help, and understand one another. We are learning to be in control of our lives, and not be victims. We learn to appreciate the smallest of things....the laughter of a child, the blaze of a warm fire, a pot of chicken soup with people we love. Cancer and the fragility of life has given us this fine gift.

I am not a saint; sometimes it is really hard to stay focused on the positive all the time. When I speak to Megan and she is sick for days on end, barely able to get out of bed, I sometimes crumble and lose sight of the good.

Megan is sick again, on antibiotics and was given her treatments yesterday. She has not been out of bed much the past few days and a few of us are helping out with Alanna. The cancer is still disappearing, but it was hard to hear Megan say that 90% of all people who have LMS have reoccurances/metastises. I don't want to think that and I want to believe that she will be in the 10% that won't. I will focus on that 10%. So all of you who do read this, please pray or meditate that she WILL be that 10% who will beat this nasty beast.

And the photo...when Megan was on leave she visited school and talked to my students about being a soldier. Here she is tan, healthy, strong. And she WILL be that way again.

Patti

New York Times Article

2007-03-21T20:56:00.000-04:00

I have not written for a while here. Life has been busy, I have had Alanna more than usual as Megan has not been feeling well. She has days where she is ok, days where she feels great, and days where she can't get out of bed or stop throwing up.

Alanna has had her days too. There is no way that this is not affecting her in some way, seeing her mother so sick. Thankfully she has a great daycare center to go to a few days a week, and she spends time with people who give her tons of love. So far we have been able to keep things as even keel as possible.

She is still too sick to work as there is no rhyme or reason to her getting ill. She still has some money to live on for another month or so, and we might have to figure out how to regenerate some more help financially. So many people have been so kind...and I am so appreciative. You have no idea how much all the support has meant to our family. My friend Karen called me today and wanted to know what she could do, and I told her that just making that phone call to me meant everything in the world. It has been a really rough winter for all of us, and the kindness of others has been what has kept a smile on my face when I thought that impossible.

I read the New York Times article today from the sunday magazine on Women in the War. I think everyone should read it..you can go to nytimes. com and at the bottom go to Magazine and the link to the article "The Women's War". I could not finish it as I was so upset and knew too much already--first hand from Megan about the sexual harassment and abuse.....Megan said she never went anywhere without a knife out of fear of ANY man..not just the "enemy". She did file harassment charges a few times against one of her commanding officers, and they were "demoted" as a result, but it sounds like she was lucky, as this is not often the norm. The article touched the tip of the iceberg and did not cover other abuses of women, pregnancy in the miliatry, and the diseases that women come home with.

I cannot write more about it as I will get too angry and need to keep a positive focus for all concerned.

Don't Worry..be Happy

2007-03-14T21:39:00.000-04:00

I just got off the phone with Megan. She had her treatments yesterday, and has been very sick for the past 24 hours, but still keeps going. We talked about relationships, about children, and about aging, and we agreed that the only way to live life is to be happy.

I was just talking to someone recently who had gone to a seminar at the Omega Institute...and she had taken notes all weekend long about improving the quality of one's life etc. At the very end, the teacher ended it with "all that matters is that you are happy". With that she tore up the weekend's worth of notes, and on one single piece of paper, wrote "BE HAPPY".

Though it is hard to practice at times, I strive to be happy through the sorrow, pain, and loss that I feel in my life. I know it means growth and meaning for the large picture that we may not always be able to see.

Tonight I found great happiness in saying "I love you" to her, after sharing some silly stories about school or Alanna. No matter how hard it all is, we end the conversation with a smile and with love. Because in the end, that is all there is.

Tonight's picture is a bit morbid. It is a picture that someone in Megan's platoon took of her while she was taking a rest in the heat. I guess she put her dog tags over her eyes to keep out the light. The strength of the hot desert sun in Iraq is splashed across her face. Her scars show in such harshness......but they too have faded slowly with time.

This weekend is a peace march in several places...perhaps I will join one. Patti

Good News

2007-03-07T08:25:00.000-05:00

You know Ms. Jolie, you don't have that much over my daughter, save for a few bucks and your health. I was in the store the other day, and one of the magazines on a rack had a shot of her on the cover. At quick glance, I saw my daughter staring at me. I was rather jolted, and went over to look at it closer. I covered up a few parts, looked closely, moved back, laughed, and smiled. I am sure that the people in the store thought me a bit odd, but at this stage in my life, do you think I care????? To me, my daughter is the true hero, a true star. Megan, I hope you read this.....because it comes from my heart.

Yesterday was chemo/rad day and she had to go for a PET and a CT scan. The good news was, the cancer in the rectum did not show up on the PET, hopefully meaning it was caught early and the chemo has eradicated it, and the tumor in the stomach is continuing to shrink. The doctor thinks that another few months of chemo will do it.

I was overjoyed. Things have been really rocky in my life, and to hear this was a balm to my soul. She has a safe and sweet place to live courtesy of Julie, which she can afford with help from us and the generosity of donations from all you folks. She still has some healing and cannot work. Last night she was vomiting, and today is in pain. But the baby is in child care for the day, she is warm, safe, and loved. I told her to heal and maybe I will stop home and bring her the "hell of a soup" I made last night. My food is always made with love and healing.

Larry took this digital photo a few weeks ago. Megan looks radiant and beautiful..you would never know how sick she is. She carries herself with strength and dignity...I should be so strong.

Love you girl! xxxmom

Settling In

2007-03-04T13:08:00.000-05:00

Larry took this recent photo with his Rolliflex camera. He really captures the essence of her in this. She is such a beautiful child..though a spitfire at times. But hey, you have genetics involved and the women in her life are all strong wild women.

Megan is finally moved in and in the process of unpacking and settling. She got the awful illness that I am still battling for 10 days now. Thankfully she is not working, and hopefully it will be over with by Tuesday when she goes for her treatments. She will have another PET scan I think on Tuesday, to see how everything is progressing, assuming Medicaid will OK it this time. I keep visualizing the cancer cells being killed off, and her being on a steady road to recovery.

Her little house is sweet, Alanna can run and jump without fear of curses and violence from downstairs neighbors, they can take a bath or shower without fear of running out of water...no ceilings are falling in. They are in the woods, in quiet, and not too far from anything. A few friends of mine live close by, and Julie's family still lives on the property in case there is a problem. And it is all good.

I am thankful for friends, for family, for the generosity of you all out there, and for my greater power and love that exists for all of us. Each day I learn an important lesson, and each day I live my life to its fullest.

In peace, in love, Patti

PS I am a bit behind, but I am writing thank you notes to all of you who have been so generous to Megan!!! THANK YOU!!!

Mostly Moved

2007-03-01T17:12:00.000-05:00

It has been a long week. Long for me and even longer for Megan. She had to move out w/in three days and somehow managed to pull it all together in spite of the chemo and radiation. When I left her in the new house (THANK YOU JULIE!!) she was sick with what I have (some nasty lingering thing) and could hardly move. I have not been able to reach her, so I hope all is well.

This weekend me and perhaps some of my friends will help her clean, set up the house, and make it cozy for her and Alanna. It is a sweet house, with plenty of room in it for the both of them, and it is even partially furnished with vintage and antique furniture.

When Megan and I walked in we recognized so many things from having lived with Julie a few times in the course of our adventurous life. It gives a feeling of warmth and memories of a more innocent time. I would like to say less stressful, but our life was always stressful in one form or another.

I hope it works for everyone concerned, and may she have more peace and comfort than where she was last living. I hope it helps out Julie too....having someone take care of the place until it sells.

A photo I took of Alanna the other night reading a photo magazine with Larry. SHE LOVES BOOKS....LOVES books. I wonder, is it genetic or environmental? I suspect a little of both.

p.

.

Moving and Antics

2007-02-27T18:36:00.000-05:00

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

2007-02-26T08:47:00.000-05:00

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

2007-02-24T16:00:00.000-05:00

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

2007-02-20T23:08:00.000-05:00

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

2007-02-18T11:14:00.000-05:00

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

2007-02-14T20:30:00.000-05:00

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

2007-02-13T23:58:00.000-05:00

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????

2007-02-11T22:14:00.000-05:00

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

2007-02-08T22:24:00.000-05:00

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

2007-02-06T18:22:00.000-05:00

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

2007-02-03T21:53:00.000-05:00

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

Words of Strength

2007-01-31T22:39:00.000-05:00

I am tired. It has been a long day of teaching (no 2 hour delay for me..for most other schools, but not for MY district!!) and running around after school. I met my dear friend Rob in New Paltz, and we had a delightful dinner, listening to each other's pain, but agreeing that it has made us who we are today.

People have written me words of encouragement, have shown me strength and survival. I am thinking of one man who emailed me, put Megan's name in for the RobinHood Wish Fund.

You can follow the link I made, register, and vote for whom you think deserves the wish for the week. He asked for money for Megan for her to live on while getting chemo and radiation; I have not really read the details that closely nor understand yet how it works, but I was touched by the kindness and caring of a man who today was going into major surgery today for another re-occurrence of his own cancer- a man who has never met my daughter or I.

Another cancer survivor wrote to me "You gain strength, experience, and confidence by every experience where you really stop to look fear in the face... You must do the thing you cannot do." ~Eleanor Roosevelt. That will be this weeks quote on my board; may I learn from all these brave souls who can still reach beyond themselves unto others.

Thank you all for your kindness and compassion. It is held closely in my heart.

Tuesday Afternoon

2007-01-30T21:28:00.000-05:00

Tuesday Afternoon...a Moody Blues song from my youth. It has taken on a different meaning for me these days as it is always an intense day, on both ends of the spectrum.

Megan has chemo on tuesdays, so I spend the morning thinking about it. I know how sick she gets and how she sounds when she calls me. I carefully ask how the visit with the doc went, what the results of the PET scan are, and what is next. It has taken a long time for the both of us to get to a point where we can talk honestly and with love, even when we disagree. I think if I have to find a light in all of this, it is the relationships that are forged between people in times of great stress and pain. I have a new relationship with my daughter, a beautiful one with my granddaughter, and have been embraced by friends and community with love and donations at a time when I have been most vulnerable.

Today's good news was that the spot behind her stomach near her spine is nothing. But they are going to be combining chemo with radiation in order to get rid of this tumor. They are concerned with her inablility to eat and maintain good nutrition; the marinol is not working. Radiation is going to make it painful to eat as it will burn her esophagus. But we forge on.

Tuesdays I pick up Alanna right after school and take her home. I make an effort with what energy I have to color, read, play, "swim" in the bathtub, run in the house, and chase the cats. I make a nice dinner, and we have a wonderful time being children together. I lighten up because I have to for the baby, and try not to be so absorbed in the intensity.

It is snowing tonight and I am hoping we get a 2 hour delay. A delay would be perfect as I have Alanna, and hate to wake her up at 6:30 to get to a sitter before I go to work. Perhaps the universe will be caring and give me a break. For once. LOL. Patti

PS Alanna this afternoon running around with the popper. I had one as a kid and LOVED it. To this day I STILL love it...the colored balls flying around inside.....

Dust in the Wind

2007-01-29T18:05:00.000-05:00

At times it is surreal to even think that my daughter was a soldier in a war. We here in the US are so removed from this war, once in a while getting a glimpse of it on TV, and the stories we get are largely manipulated by the media. I watch CNN as it is the most fair in its reporting (I think) but I know that they too, are probably not reporting 100% truth.

I can't imagine war. Or wanting to go into the military. I am a pacifist; a hand slamming upon a table makes me run for cover. A raised voice brings panic. One of the things I had to come to terms with was Megan's choice to join the ARMY. At the time she joined, I don't think she ever thought she would go to war.

I thought about the stories Megan would tell me about the dust storms that raged through the desert, where everything would become coated with sand, and I thought about the romantic and sexually charged scene in the English Patient. I can only hope that perhaps there were some moments like that for her....

This is not the venue for my politics.....but sometimes thinking about what she had to do makes me crazy. By the way, the person to the right is Megan. You would never know underneath the kevlar and uniform lies a young woman who was picked up at a store by an agent for modeling......

Tomorrow is chemo and another PET scan. They need to recheck the spot that showed up near her spine. I have arranged to take Alanna overnight so that she can rest in bed as the chemo they give her is the strength that is given for stage IV cancer patients, or so she tells me. She aches all the time, but the first few days are torture for her. The oncologist gave her some very strong painkillers, but she can't take it as she hallucinates and vomits more than usual. She told me she was going to bring them all in and give them back to him and ask for something less powerful to take. The only thing I can do is take the baby and try to get some child care together for her from tuesday thru fridays, which I am in the process of working on. Childcare providers come and go and once again we are without a reliable baby sitter. If I could only stay home....I have plenty of sick time, but I am reluctant to use it in case I REALLY need it down the road. I hate to think of it, but it is wise to plan ahead..

I have joined a sarcoma group online which has tons of information. I have been in contact of one of the people there, a wonderful man who has been battling it for years and now has to have another surgery. He has such a positive outlook and is an architect who lives in the moment. He was such an inspiration to me and posted a wish to the Robinhood fund for her, where you can vote as to who should get donations for a worthy cause. As soon as I get more info, it will be posted here.

Off to post to my own blog and see some pictures I took along the Hudson River this afternoon on my way to see Megan. The sun was sinking, and my hands froze, but the ice was beautiful in its coldness and isolation. I felt one with the ice, and yes, we are all just dust in the wind..............patti

Hope

2007-01-27T15:29:00.000-05:00

Thank God for art. It keeps me sane when I otherwise would be entertaining black, dark thoughts. Those thoughts are hard to keep away, but I can keep them at bay by sublimating my pain in my art.

This is one of a series I am doing on childhood diseases. Diseases that might have killed our children 100 years ago. Medicine has come far. We can prevent things like polio, which 50 years ago was a disease that maimed and killed thousands. My father contracted polio, and was forever affected by it until his death.

My father got cancer at my age-49. Primary tumor unknown, metastasis to the lymph nodes and finally, to the brain. Once found, the doctors said it was too late to treat him. They gave him a year to live; he died within three months. I was 19, and we were never allowed to tell him he was going to die. I won't relate the effects it had on four children for the rest of their lives, and how horrible it was to watch a parent die day by day. Perhaps if he was alive today he might have been given a longer lease on life, and been in less pain.

Perhaps this is why I feel so fragile now facing the same disease, but only in my own child. Sometimes Megan gets angry with me because I ask so many questions and I want to be intimately involved in her treatments and in her life. Perhaps in some ways I am trying to make up for what I could not do thirty years ago.

I have to believe that medicine can cure and save my child. Somehow I have to have hope and faith. I wish my own spirituality were stronger as I don't think that my own resources are strong enough to get me through this.....
For now I have art, friends, and an online support group. My therapist is very ill, so I don't have her right now...she was my guiding light towards finding my own spirituality and healing. I grasp at straws, holding tight when I get one.

I apologized to Megan for being so assertive; she told me it was OK, as it all was bigger and larger than she could handle. We take it a moment at a time.

Today she was smiling..she spent the evening with friends playing poker and won 50.00......and was heading home with her boyfriend and daughter. I will make her a pot of sauce tonight...and put in love, hope, strength, and healing.

Patti

Rough Times

2007-01-25T22:32:00.000-05:00

This is Megan's daughter, Alanna Sophia Hightower. She is a beautiful child, and a good one. After talking to Megan today, I felt so sad and wanted Alanna's magic wand to make everything better. My magic wand is dead and I need to go back to magic school to revitalize it. It is not working too well at all...in fact, it barely has any charge, LOL. Maybe as one ages, the magic gets dimmer and dimmer. Well I am going to have to fix that!

Megan had a rough day. I am sure it is a combination of depression, pain, contant vomitting, not being able to give her daughter the care she needs. She was crying, and I felt so helpless. All I can do is tell her I am here and try to keep the lines of communication going. I can't help if I don't know what is going on, and since Megan is cut right out of her mother's butt..she is trying to deal with everything on her own, not telling me what she needs, and then when it gets to much, the house of cards collapses. Lord do I know that story well. It took me how many years to learn?!

I am going to see what strings I can pull to get Alanna into daycare at my school, even a few days a week. I can visit her on my lunch and it would be the best possible fix for now. We have a private caregiver, and will try to utilize her too.

I have received infomation on Megan's type of cancer through some wonderful women who got the link to this blog, possibly through the Meganaid site. I have joined the listserve as I believe in having as much knowledge about the beast you are dealing with. I also forwarded it onto Megan.

I just can't even imagine being her. 22....in a war, and sick for 2 years, birthing a child and raising her on her own for the most part (she does get child support), and now this. She is a brave, brave woman and I so respect her. I need to tell her that. If it weren't so late I would call her up.

Till tomorrow, Patti

Malibu Offer

2007-01-25T06:45:00.000-05:00

I could not sleep last night; I suspect it is a combination of hormones and not being able to shut my brain down with all of this.

I have so many more people to thank, and as I lay tossing and turning, I was thinking of you all. My friends, my co-workers, and the huge art community all over the world that I have been involved with over the years who have read my blog, sent emails of support, empathy, money, and prayers.

Megan called me excited as I was leaving last night, as Michael Blake, who was in the documentary movie The Ground Truth and a member of the IVAW (I have to remember to make links later to both of these!) called her with an offer. An all expense paid trip to Malibu, California, for a Iraq Veteran Women's Counseling Retreat. Another group is sponsoring it, but he wanted to ask Megan if he could give the group her name. We don't have more details, and it is coming up in a few weeks, but I told her I would take Alanna and figure out child care so that she could go.

I do hope that she does go, as this could be so good for her; to get together with other women who experienced much of the same horrors that she has. Perhaps some also have illnesses too and Megan won't feel so alone. I am sure that there are not that many women in our neck of the woods here that are returned Iraq vets...and Megan might benefit from a weekend if it is really well run. Never mind Malibu!

So out of pain does come good. I HAVE TO BELIEVE THAT. Otherwise I don't know how I will go on.

I was talking to a co-worker and I told him that it was so hard to see her suffer and to force myself to see the possible ramifications of her illness. I am a mess. I just don't know how I will keep going if things get worse. I know I will have to, at least for Alanna's sake.

The photo is of Megan before she left for boot camp four years ago, being her coy and silly self.

Thank you all again, xxxpatti

Update

2007-01-23T23:22:00.000-05:00

Photo-Megan in Iraq next to a vehicle that she was working on. I wonder, how much of that dust did she inhale and injest? How much of that dust contained Depleted Uranium?

Today I was hoping for joyful news. Instead it held more angst.

After a few months I finally found out what kind of cancer she has. A rare type, found in 1% of all cancers. And, to boot, is rare under the age of 50-70. And 18% of this type of cancer is in the stomach. Leiomyosarcoma.

The mortality rate is very high in stomach cancer. Most of the times it depends upon the success of surgically removing it; even that is no guarantee. This cancer is in such a bad spot that even Sloan Kettering does not want to touch it.

Up to now the news was that the tumor was shrinking. After the PET scan however, it was found that yes, the tumor is shrinking, but the number of cancer cells still present after being bombarded with intense chemo, is higher than the doctor feels comfortable. And, there is a spot near her spine. Back to consult w/Sloan, and we see where we go from there. Though the tests show no metastisis to her lymphatic system, other tests point to it. NOTHING has been normal about all her illnesses since she returned from Iraq. NOTHING.

Kidney stones, blood work with results that mimic several diseases, ovarian cysts with pre-cancerous cells, ovarian cysts that burst. Unexplained severe pain, disintegrating cartiledge, and now stomach cancer in a 22 year old girl, who at 18, had a perfect bill of health.

I know ultimately that they hows don't matter. She must get better. She has a two year old that can't comprehend all of this. At 49, either do I. I just pray and hope for a miracle.

patti

Thank Yous

2007-01-22T18:58:00.000-05:00

This photo is of Megan and Alanna who were at my house two years ago for my first snow day. The weather has been too warm this year to have produced any snow this year for a snow day...which is the first time in 15 years that I can remember. No delays either.

There are a group of people that I want to thank for the movement that has started to help Megan out. I never asked for anything in my life, and still have difficulty in asking for anything for myself, but when you have a child who is SICK and faces a death sentence, you get shocked into reality and perseverate on the whys, hows, and worry about how she will support herself and her child.

The social services in the county and probably in the country, do not help anyone unless they are destitiute or know how to work the system. Megan gets child support from the officer who fathered her child in Iraq, and it is just too much money to qualify her for food stamps, heat, or housing assistance. So, she had to work to pay her bills other than the rent which was covered by the support. She has been fired from two jobs..one right after she got home from the hospital, the other right after she worked herself to death over the holiday season. She has been out of work for a few weeks now; in that time she has gotten pneumonia, and broken a shoulder from passing out after chemo and falling down some stairs.

Friday night's benefit was started by my friend Loel Barr talking to Judith Singer, who then talked to Mark Wixom, the son of friends of mine who had just seen the movie "The Ground Truth" at Purchase where he is a music major. Mark had wanted to show the film at ASK (Arts Society of Kingston) and Loel and Judith thought it would be a perfect way to educate others about the plight of our returning Veterans and raise money for the IVAW and Megan. One thing led to another, and the film was shown, raising 2,000 It was unbelievable. Also a thank you to Blaise Schweitzer of the Daily Freeman for the article he wrote in Fridays paper about Megan.

Loel Barr and Jonathan Talbot, who are both fabulous artists (I have hot linked their names should you care to check out their sites)worked side by side to develop the website Meganaid.com It has been forwarded all over the world and donations of camraderie, empathy, prayer, clothes, food and money have come in. I am blown away by the generosity and concern of others for Megan's plight. We have raised enough money for her to pay her past medical bills, she will have more medical bills as Medicaid does not pay for all the tests and consultations she has needed, as well as be able to stay home a few months with Alanna.

The tumor is shrinking. Thank God for that. I try and stay optimistic though I have a hard time with knowing that this is the second site that cancerous cells have shown up. I can't help but wonder about depleted uranium and anthrax and lord knows what else our troops have been exposed to (as well as the people who live in the areas where DU is used?)

Thanks for taking the time to read this, and I will keep you posted about what is happening etc.

Blessings and abundance, Patti

Intro to Megan Aid

2007-01-20T17:04:00.000-05:00

This blog has been set up for friends, family, veterans, all who care to keep in touch with Megan's progress. I may not write daily, but will update on at least a weekly basis. Please feel free to pass the link to meganaid.com. It contains wonderful pictures and the story as well as contact info. So far some pretty amazing people have come forth with generous donations.

Currently Megan is not working. She recently lost her job, and immediately after that she developed the flu which turned into walking pneumonia. She is on antibiotics, and should be on the mend soon. She is still receiving chemo; she has been on it 3 months now. The tumor is shrinking, but her blood work is abnormal in spite of the meds she is getting, so they are doing more tests on that. She has another 5 months of chemo to go at the very least, and she needs to be home to take care of her toddler so that she has a chance to heal both physically and emotionally.

The ARMY has deemed her 80% disabled due to her deteriorating hips and spine. She has applied for disability; it will take a year to collect it. So she has served our country, is disabled due to her service, has stomach cancer which is EXREMEMLY rare for a 22 year old, which may or may not be related to Depleted Uranium.....and has to wait a YEAR at least to collect any monies. No matter one's political persuasion or view point, this is not how we take care of your Military personnel.

Last night was the benefit for her at the ARTS SOCIETY of KINGSTON. The place was packed, the film THE GROUND TRUTH WAS SHOWN, and an amazing young man from the group IVAW talked. It was a heavy evening for us all..every more difficult for Megan, seeing the senseless murder of our troops and Iraqi civilians replayed as well as morter, bombs, and images of war that are NOT romantic nor pretty. We raised 2,000.00 which was split between Megan and the IVAW. Megan has been able to pay off her previous medical bills and such that started occuring in October when she was hospitalized.

I thank all of you for the prayers, food, clothing, donations for Megan, for being my friend and supporter in a time that is very difficult. The issue of Megan's health has become an issue larger than just her, it has been a concern for the growing number of military coming back from war with PTSD, injuries, cancer, and a whole host of problems.

Have a great weekend! Patti (Megan's mom)