Words of Strength

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

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

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

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

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

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

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

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

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)