Remission and Knee Surgery

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

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

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

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

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

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 !!!

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