Twinkling lights of life

Sad news......

2006-05-12T15:23:55Z

I just received this email...

Subject: from me, char's "sister"...
charlene ann ward passed away on 3/11 at 3:15am. i will get the e-mail address that you need by monday should you want to submitt something to be read at her memorial service.

From Char's Friend Debra:

As some of you already know, Char died this morning at 3:30 a.m. She went quietly, as she had been fading away quietly and gracefully over the past few days. There was a full moon outside, and she was by the window where the light of the moon could reach her.

Char was 53 years old, and had been battling lymphoma for almost 12 years since her diagnosis in 1995. Through her strong presence on the lymphoma board, she gave information, hope and tremendous support to many others who were battling this awful disease. As a caregiver to many children, she gave guidance and love to many children whose lives she helped to shape.

Her brother Chuck will be here tomorrow to help with arrangements, and her pastor Julianne Stockstad is planning a memorial service the evening of Monday, May 15th at the First Congregational Church in San Rafael, at 7pm. The address there is 8 North San Pedro Road, on the West side of Highway 101 at the North San Pedro Road exit. All are welcome. If you have poems or thoughts to share and can't be there in person, please send them to me, and I'll be sure that they get read at her service. Also, if you have access to any of the poems she wrote, I'd love to share those as well.

Just recieved an update letter! Here it is:

2005-04-12T03:51:03Z

Hello friends of Char -

The exciting news is that Char's friends on the lymphoma board pitched in to buy her a laptop. Mike heroically crawled around the house the day it arrived, getting dial-up and wireless software installed to hook up to AOL and let her be connected again. (He's a week in to the recovery from his achilles tendon surgery, and can't walk for 7 more weeks). I took the computer over to Char at Kentfield and we got it working right away. She was thrilled! Now she can be in touch with you all directly from her bed in the rehab center, and can let you know the news about her recovery. She is still at Kentfield Rehab Hospital, but has moved to a new (better) room. You can reach her at:

Kentfield Rehabilitation Hospital Room 206-A
1125 Sir Frances Drake Blvd.
Kentfield, CA. 95904.

The phone number there is 415-456-9680. If you get the recording, you punch in 2061 to get the extension for her room.

Debra

...............

I am amazed that her lymphoma board did that for her. Wow! I talked to Char the other night and dispite it all, she did sound much better than she had. :) Deb aka wisteria

Update Letter from Char's employer!

2005-03-31T08:35:08Z

Hello friends of Char -

I am writing to give you the latest news. Char moved from Marin General Hospital to a rehab center today. She is at:

Kentfield Rehabilitation Hospital Room 126-A
1125 Sir Frances Drake Blvd.
Kentfield, CA. 95904.

The phone number there is 415-456-9680. When you get the recording, you punch in 1261 to get the extension for her room.

I understand that she will be able to get access to a computer at Kentfield, which means that she'll be able (eventually) to catch up on her email and check into her favorite message boards. I don't know how long she'll be there, or where they'll send her next.

Kentfield is all about getting her up and mobile again. She has scheduled rehab sessions all day long...including teaching her how to get dressed, getting her up and walking, etc. She has taken a few (sort of) steps...more like shuffles really, but the good news is that her spine is letting her legs bear her weight. Also in the good news column is that her knee (banged up when she lost the use of her legs and fell) looks as if it is healing OK and won't need surgery. She will need to have radiation on her spine as soon as next week, and will also likely undergo another round of chemo as soon as her body can take it. Her spirits continue to be very low. Char has always been so upbeat, but this latest setback is hitting her very hard. She is having a rough time, and is feeling very alone.

A group of her friends from the lymphoma message board got together to buy her a laptop computer...such a kind gesture.
I'm going to have a tough time supporting her through this...my husband has surgery scheduled for Thursday to repair a ruptured achilles tendon, and won't be able to walk or drive for 8 weeks at least. Plus I fell on Sunday, and banged up my foot, so am on crutches and hobbling around. Do ya think there is any stress in OUR lives right now??!!?? So, without a nanny, with two young kids, and without a mobile husband, and with a company to run (in the last critical month of our fiscal year) it looks as if I'll be plenty busy. You may not hear from me for a while...but do feel free to email Char and/or to give her a call.

Best,

Debra

P.S. Gena, can you post this on the lymphoma board, and Deb, can you post it on the journal board?

kelticmysts @ 2005-03-29T15:35:00

2005-03-29T23:44:21Z

Hello all!

I'd not called Char in about 5 days or so since I had family visiting. I just got off the phone with her. She's no longer at Marin General. So, she's no longer able to recieve emails via that website.

She is now at a rehab hospital. I left the info downstairs, so I'll post it later. She'll be starting radiation sometime soon. I felt so bad for her......she sounded so uncomfortable and in pain. I asked her if they had her on pain meds and she said that she did, but I just feel so frusterated and wondering what is going on and what are they doing to ease it?

I wish I could just go down there, but I don't see me being able to visit her until some time this summer. We've already got vacation plans paid for and locked in. But anyways....

I need to get the name/address/phone info from the hospital and will do that tonight.

My mother in law is just here a few more hours and then I can get busy on that. I'll update tonight.

Please pray for her.

kelticmysts @ 2005-03-20T20:55:00

2005-03-21T05:06:43Z

I just got off the phone with Char. We had a very lighthearted conversation and I shared with her some funny things I'd found on the internet. Then I had the great idea of simply reading from her friends list so she could be updated with all of you! :)

She loved it!

So, I'll call her once a day in the evening and read her friends list!

She hasn't recieved her emails from the hospital staff yet. I'm sure there are plenty waiting for her. I will check to see if they are getting to her tomorrow. Perhaps the office is closed for the weekend....

Anyways, not much new news....

I'm hoping to do a little gifty shopping tomorrow and send her a care package.

I just can't imagine being stuck in a hospital bed for days on end with only the tv to watch. Bleh. I did share with her one funny way to watch tv in the horrible afternoon hours! My friend and I used to do it for a laugh .....we'd watch a soap and mute the volume and turn on the words instead! It's quite funny that way...

Well.....I'm rambling.

I'll let you know if I get any new news! :) ~wisteria (Deb)

Hello!

2005-03-20T13:32:44Z

I talked with Char yesterday afternoon and read her all of the prayers, thoughts, and good wishes. She is so grateful for your friendship and support and I know the notes and phone calls bring light to a difficult time. Here is the direct way to send an email to the hospital. They print and deliver them directly to her.

http://maringeneral.com/forms/email_form.htm

Oh... Here is her information to fill in the boxes:

Charlene Ward, room 4138

.............

Thank you all for your kind support. I send each of you a big hug!
Sincerely, Deb (wisteria)

kelticmysts @ 2005-03-19T06:04:00

2005-03-19T14:07:54Z

Hello Everyone -

What an intense 24 hours it's been. Wanted to let you all know that Char is now out of Intensive Care and in a room in the surgical wing (4 West) at Marin General. The physical therapist is getting her up to a sitting position now, and the highlight of the day was that she actually sat up for a full 17 minutes! While her legs continue to feel numb, she can still wiggle her toes and move her legs -- which is a good sign that she could be able to use her legs again.

Char would love to hear from you all. The phone number at Marin General Hospital is 415-925-7000, and she is in Room 4138. Gena (smart woman!)also figured out how to get an email directly to her. The volunteer services prints out the emails and delivers them to patients' rooms. She was so excited to receive a batch of emails today. I tried to find the address at the hospital today but no one there knew it, and the info link on their web site isn't working. Gena, can you help out by replying to this and giving everyone that email address so that we can keep those good wishes coming in?

Deb, can you post the message I wrote last night for Char's journal group...she told me that you have the password.

Thanks to everyone for your prayers and good wishes. I know that it means so much to Char to know that you care.

Debra

---------------------------

Keep wigglin them toes Char!

or......as Dory would say, "Just keep wigglin, just keep wigglin!"

;)

I will post the email address that is referred to as soon as I recieve it!

Hugs to you all, Deb

Latest Update......

2005-03-18T16:39:44Z

Here's a letter her employer, Debra, sent out this morning:

All-

I am writing to give you all the latest news about Char. As some of you already know, she was in Portland last week visiting Deb. While there she had severe back pain, and went to the Oregon Health Sciences Hospital to be checked out. A CT-scan didn't show anything, so Char took the pain pills they gave her and toughed it out.

But today when Char came home on the train, things got a lot worse. When our across-the-street neighbor Lorene arrived at 2pm to take Char to the doctor, she suddenly couldn't move her legs at all. She went to Marin General by ambulance, where they did more extensive testing, including an MRI. They discovered a large mass on her spine along the upper back, and the neurosurgeon immediately took her into surgery. She was in surgery for over two hours -- from 7:30pm to around 9:30pm. They let me be with her in the ICU for several hours after that. She will probably be in the ICU the rest of tonight. Her neurosurgeon Dr. Ken Blumenfield told me that he'd removed a rather large mostly fibrous tumor that seemed to be a collection of lymphatic-type tissue. The tumor had been pressing on her spinal cord, which is what caused her sudden paralysis. He did a thoracic laminectomy, which he described as "a routine type of procedure." What isn't so routine is that her lymphoma has now spread to her spine, where the MRI showed additional bony areas that could possibly be additional sites for the lymphoma. That is all of the terrible news.

The good news is that it looks as if they got her into surgery just in time. The doctor told me that if she had gone an additional 12-24 hours, she might have been a paraplegic. But after the surgery tonight, she is able to wiggle toes and lift up both of her legs. These are very hopeful signs that she will be able to recover at least some movement.

Char is in a lot of pain, and of course processing the tough news. It is too early to say exactly how long she'll be in the hospital. The doctor told me that she'll certainly need rehab, and that her oncologist may want to do some additional treatment such as radiation or additional tests such as a bone scan. He said that patients who only have the thoracic surgery (without the cancer) typically leave the hospital in three days. He expects that she'll be there longer.

I'll be going to see her first thing in the morning (not too many hours from now!). By then they expect that she'll be out of ICU and in a hospital room. I'll update you all via email if I learn anything more. I'll also take her cell phone to her...which they might let her use in her room.

Please accept my apologies for communicating in this less-than-personal way to you all...but I wanted to let everyone across several time zones know what is up.

If you have any messages you'd like for me to relay to Char, feel free to respond to this email. I'll print them out and will be sure that they get to her.

Best,

Debra
.............................

I will send all notes posted here down to her and will update you as I hear things.

Hugs to you all.... Love, wisteria

kelticmysts @ 2005-03-17T21:38:00

2005-03-18T05:49:39Z

Hi, this is wisteria, Char's friend.

I talked to her this afternoon just 20 minutes after she arrived home from the train station. She was having numbness in her legs and it kept getting worse and the doctor wanted to see her just an hour after her arrival. She gave me her password to her lj account just in case they admitted her. I just got home from my daughter's birthday movie to find a message for me. I called her cell phone and her employer, Debra answered.
She told me that when her friend came to pick her up for her docs appt, she couldn't get out of the chair, so they called an ambulance. She was admitted immediately, they did an MRI and they saw a 'mass' clearly on her spinal column. Why this wasn't caught during the CT scan...I haven't a clue. That doc made it sound like it was a small spot that may or may not be a tumor. What I heard from Debra was that it is either internal bleeding, a tumor, or something else (forgive my bad memory....)
So, at this point, she's been in surgery for 3 hours and Debra hasn't heard anything yet. I will be recieving an email or a phone call tomorrow with an update.

I wish I had more news for you......but this is all I have.

Please send thoughts or prayers of healing her way.....

~wisteria (aka Deb)

Hours pass through the glass of time as the river flows

2005-03-08T04:20:34Z

The Gift of Fortitude

Nothing happens to any man which he is not formed by nature to bear~~Marcus Aurelius (121-80),Roman Emperor

The pain is wearing me down I have to admit. I've not had a day free from intense moderate to severe pain in my back since the needle biopsy. I mentioned the pain last time I was in my oncologists office and he told me more than likely a nerve was cut or a hole was like poked in it. It supposed to repair itself but may time sometime to do so. Dang I am so like ready for it to start you know what I mean? I take pain med's for it when its really bad but it really doesn't last that long :( Its becoming harder to sit down and even sometimes certain ways I lay down. I do hope the train ride sleeping in that berth won't be too terribly uncomfortable. If this persists or even worsens after I get back from my little adventure I am going to ask to see a nuerologist. I can take a lot of pain, have done so for a long time now, but this is really beginning to tax me. What I wouldn't give for one pain free day even an hour *sighs* Sorry guys but this is beginning to chip away at me you know and I just needed to crank and crab about it.

3 more days and I get to take the train for some fun :D Look out wisteria I is a comin LOL LOL ;D Oh yeah calming I packed my kitty cat stocking cap that you sent me just in case we go to the Mt. Hood area :D

*hugs*

Char :D

Weirdness and people in the air....

2003-01-06T16:48:07Z

Sweet Darkness

When your eyes are tired
the world is tired also.

When your vision has gone
no part of the world can find you.

Time to go into the dark
where the night has eyes
to recognize its own.

There you can be sure
you are not beyond love.

The dark will be your womb
tonight.

The night will give you a horizon
further than you can see.

You must learn one thing.
The world was made to be free in.

Give up all the other worlds
except the one to which you belong.

Sometimes it takes darkness and the sweet
confinement of your aloneness
to learn

anything or anyone
that does not bring you alive

is too small for you.

David Whyte

Okay as much as I hate to do this I am making my LJ Friend's Only right now. I've had a couple of incidents where someone has given me pause to be cautious.

Soooo if ya want to read my LJ give me a buzz and I just might add you and maybe we can start an intelligent yet witty conversation between us :)

Have a good day :D