Sailing Away

Cynthia Anne Greene passed away around 2:30 pm today, October 20, 2015.  She was in her bed, covered with her quilts, snuggled by Kari, Cindy, and Quincy, holding hands with Todd, Garrett at her feet, her steady friend and caregiver Cindy by her side, and all around surrounded with love.  We shared stories and a few laughs while she gradually went to sleep.  She awoke a few times to smile but was overall peaceful and relaxed.

Thank you to everyone who called, visited, and sent emails, flowers, and love our way.  The outpouring of support and hearing about the impression her life had on others was amazing.  She's free of all equipment now and sailing away to her next adventure.

Reaching Deep book info

Some of you have asked about my book recently.

Book Link:
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=reaching+deep%2C+cynthia+greene

Or search for "Reaching Deep, Cynthia Greene" on www.amazon.com/books

The more expensive version has color photos as the beginning of each year. The less expensive version only has photos on the front and back cover.

Update

Dear Family and Friends,

Last January I wrote about going on hospice and the right of everyone to decline medical care. My book made me choose to delay turning off my vent. It was an exciting time to see it come together. Sharing it with others added to the pleasure. Because my health was not declining and I had no immediate plans to turn off my vent I was released from hospice. I spent a delightful summer sitting in the sun and soaking up the warmth.

Now the time has come to once again evaluate my life. I'm back on hospice and planning to turn off my vent. It has been a difficult decision, especially when looking at our grandsons. Talking with Doctor Libby, my pulmonologist, gave a certain sense of peace. He has been with me since the beginning and knew I wanted to be able to turn off the vent when the time came. He also was clear that they might not be able to get me off the vent after the gall bladder surgery, I have a lot of confidence in him.

The decision has not been easy but Todd and Kari are with me. They have seen my struggle to communicate with the eyegaze system. So on October 20th I will be turning off my venting. A memorial service will be held November 7th at 6:00 at Rose City Park Presbyterian Church in Portland.
 
Don't forget to live your dreams while you can.
 
Love to all of you,

Cynthia

Walk Time

Last entry I said I would focus on the Walk to Defeat ALS.  It is Sunday September 27th.  No matter how I'm feeling it's exhilarating to see all the people. Once started there are people spread over the entire three mile route along the Willamette river.  It is exciting to look at both bridges and the far side of the River filled. Last year people were finished before some had started. 

There is still time to join us or sponser me if you want.http://web.alsa.org/site/TR/Walks/?pg=team&fr_id=11029&team_id=338348

Summer

Okay so it has been three months since I have posted. Brief version is there  have been ups and downs .

June brought two visits from people passing through Portland. One visit was from some long time friends from Bakersfield on their way to visit grandchildren who recently moved to Washington. I made a good lunch stop. It's almost time to visit again. We grandparents can't wait to long between visits. For the same reason I don't expect them to stop by each time, maybe just when it times right for a lunch break. Of course the best part of June was Sam's Birthday.  His other grandparents were here too, so it was a fun day.  Sam is one of those special kids who really makes you feel special when he says "thanks I like this".

July started hot and stayed that way. I had to laugh to myself sometimes because I thought it felt good outside. The plants are not at all happy. We are in a neighborhood where most people have chosen not to water the front lawn. There are areas that have green edges where shrubs have been watered. When the tree people plant a tree many get watering bags. These make sure the  baby trees get slow deep watering. It also makes a green circle.

Todd was considerably nicer than me when he bought a room air conditioner to keep my main caregiver, Cindy, comfortable.  It looks like a minion and served its purpose well. I would stay as far away as possible or go outside as my comfort level is in the low 80's and hers, like most Oregon folks, in the low 70's. We manage to keep a happy medium and the nights cool off so I can open all the windows and my bedroom door.  If there is any breeze the wind chimes let me know. 

Since I need a nap or two every day and time to rest my eyes the time spent outside is good. We have been fortunate to have only one really smoky day from all the fires.  The air I breath is filtered so I had no problem. However I am beginning to look for rain, plants here are not accustomed to months without rain. This is one time I can hope for a good rain.  The previous was written the  two days ago.  We had a real thunder storm. I don't know if any of the fires got rain and now it is very windy.

All the yack about weather has probably bored those facing worse. What I should be writing about that is the upcoming ALS walk.  If you don't want to know about it or be asked to make a donation don't read the next entry. 

Chemistry

It has been a while since I have written. It is much easier to write about events than daily living.  We are in the process of changing my anti depression medication. The one big one I had been taking was dropped by the insurance company. At the local pharmacy it was $2237 for a 90 day supply. A bit of sticker shock. So we are in the process of easing that one out and bringing another one.  Interesting how chemistry can have such an influence on our minds. 

Toe Signing Party

More about my book. Several people at church had ordered my book. When they arrived my friend and mentor, Rae passed them out. Somehow the idea of a toe signing party came up. Sounded fun so plans were made. Caregiver Cindy got to bake several kinds of cookies, we bought a green stamp pad, some different teas and some wine. Let the party begin. 

At the party I had two phrases that people could choose to write in their book. After that it was stamped with a green toe. It was a fun day.

Family Gathering

Last Saturday was the memorial service for Dave's dad Jim. Dave's sisters, all the grandchildren and great grandchildren stayed together in a rental house and at one of his sister's house.  They were able to rent a very large house for four days and have a great gathering place.  For many years Jim had arranged a long weekend with everyone together. Then the "kids" planned it for several years. The last one was in 2009 so everyone was glad to be together.  It also seemed like a great way to honor Jim.  

Todd's birthday

In our house April 14th is not the day before tax day, but Todd's birthday.  This year he turned 45.  He had to think about that about that a bit. As usual we had sour cream sponge cake with strawberries and vanilla ice cream.  This cake has been his special cake for almost 40 years. It is easy to make and delectable.  There is one small problem, the cake is topped with powdered sugar. Not good when blowing out candles, use your imagination.  My caregivers are always looking for something to do so the clean up goes quickly. The biggest problem with this cake is that it keeps calling to you. Todd thinks it might be better the next day. Just a little for breakfast or maybe a quick slice before going out the door.  Or when coming in, or when walking by. This is a cake that can stand on it's own.

Jim Greene

Wednesday evening Dave's dad, Jim, died at age 97. It is somewhat appropriate that he died on April fools day.  Jim loved a good practical joke, from both sides. He would often sit re-telling each story and laugh. I think we all learned to laugh at ourselves. He will be long remembered. 

Collecting Stories

Well the change in anti depression and anti anxiety medication has helped my desire to be part of this world. The biggest thing is the printing of a book with a collection of stories told via emails from our time on the boat. For a while a friend has been encouraging me to put the emails in a book. Gail had been encouraging, but when she got Rae involved things really took off. Rae had self published books and knew the process well. With the help of several people the biggest book is almost ready to be sent in for the sample printing.  

Proud Mama

On Thursday February 5, PIVOT Architecture held a big party to celebrate the addition of Kari and another woman as partners. We know Dave would have been so very proud. She is off and running, signed her first contract, lead on another project, and lead on their part of a group proposal.  The other important piece is that both new partners are women in a male dominated field.   

Christmas

Christmas was our 3rd sleepover with Kari and Garrett guarding the Christmas tree and stockings.  Todd, Cindy, Walker, Sam, and Miles slept downstairs so we could all be under the same roof waiting for Santa.  For the first time, the grown-ups got up before the kids!  But not by much.  

Following my sock themed birthday success, we all got and gave lots of socks this year.  Sam was even excited about the new underwear in his stocking.  We had a very nice, relaxing day together.  Kari made a short video to document the day.  Take a look at my Facebook page if you haven’t seen it.

I’ve also been watching and enjoying a lot of college football this year.   Go DUCKS!

Catching Up

Barbara, thanks for yours and others concern. Many people have sent emails with concern and news.

Keeping in mind the difference between ordeal and adventure has been difficult.   Kari updated family in October and I will ask her to include blog next time.  October started with ER that moved to hospital stay and surgery for kidney stones.  I was lucky to get the same anesthesiologist as the one I had in June for my breast surgery. Week later needed ten days of catheter. How wonderful it is to pee.

Of course all of this requires blood draw and IVs, after one person tried  for a half hour using a portable  ultrasound he had to go to other patients. The next person spent a hour with full size ultrasound and was able to start an IV.   She said it was the hardest one she had ever done.   Getting blood is not as hard if not much is needed. Still it has been a continuing problem. During all this questions were raised about my blood sugar. One more test. This ended up being drawn from my foot.  Adding to the stress was the loss of my ability to drive my chair even inside. Also started having anxiety and panic attacks.  So that led to gradual changes in those drugs while daily monitoring blood sugar. Just because i had a Birthday doesn't mean my body gets to give up.

Speaking about birthday. A few friends planned to come for tea. This surprised me to become a full party with a “sock-it-to-me” theme.  Everyone who came brought me socks to replace the pairs that had one toe cut off.  Because I cannot move, each person opened their socks and told me why they got them.  There are stripes, dots, santa dogs, fluffy slippers, knee socks, and smart wool.

Computers!?!

Got dynavox back, put it on mount, turned it on. Screen turned on but  not the eye max. Repeat. Repeat. Called tech support. Did a shut down. Let stand for 20 seconds. Started up. No green  blinking lights on eyegaze bar. Repeat. Repeat.  Repeat. Then tech support says send it back. We pay shipping so will email a shipping label. Try one more time. Still nothing. Has to ship to Pittsburg so takes week each way. October before it is back.

Remember Peanuts cartoons when Lucy got frustrated she would say Arghhhhn ARGHHHHHH

Learning

My newest caregiver is Dayne.  She is twenty two and going to school to be a medical assistant. I predict she will be a success.  Why you  ask?  She came bouncing in today saying school was so fun today. They did three kinds of blood draws and put on and cut off a cast. And she got 100 on her test.  I don't know about you but that would not be my idea of a fun day. However I would like her to work for my doctor. I think she has chosen the right field.  She must be a delight to teach.

Lobby Congress Please!

I am asking everyone to contact your members of Congress. There is a move to discontinue medicare coverage of speech generating devices (SGD) such as the one I use.  In addition there is a move to discontinue coverage of any device that can connect to the internet. I think you all know how important a SGD with internet is to me.  People living with ALS would  not be able to connect as I am now.

Please tell your representatives to sign the letter supporting SGD  before September 5th.

 

Here is a link to the ALS website and links to sample letters.

http://capwiz.com/alsa/issues/alert/?alertid=63296496&MC_plugin=2821

 

Thanks much!

Ice Bucket Challenge

Everyone is doing the ice  bucket challenge!!! Todd set up a system that doused  four people at once AND I pulled the rope with my chair.  We doused 12 people on Sunday.

Dave would have been proud of the engineering in the simple design.

The amount of money raised is mind  boggeling. Maybe now something will be found to treat or maybe even stop ALS. Of course everybody realizes this is a one time windfall but the awareness of ALS will not go away. Even if only half the people know what the disease does that is many more than before.  So a great big thank you for everyone that took the challenge and also donated.  I hope some marked it for my walk team Gang Greene.

Computers

Yes, Barbara you are right. It has a long time since I have posted. Thanks for noticing. There are several reasons. One is that I had problems with eyegaze on dynavox. Second is the opportunity to try a different device called Tobii. Third is my decrease in leg strength.

Here is the situation. Once again dynavox would not calabrate. Tried several things before calling technical support. Solution was once again to send it in. Oh by the way your warenty is up August 28. I really think the eyegaze has worked less than half the time I have had it. Thinking that learning Tobii quick and easy would solve that problem I choose not to send it in. Looks like I will have to get a loaner any way.

Tobii is taking time to learn and there are some things that are better on each system. I am using Tobii now and you have probably noticed spelling and grammer errors. Although much easier to set up the word prediction is not as good. I have noticed several places where I must have misspelld something when I first used it. A bad speller like me is never sure the word is correct. Now add in the difficulty editing and it is a mess.

Life is Never Boring

I checked out with surgeon yesterday. Everything is healing nicely and I don't need to go back. He was concerned about my neck brace and had debated between making the cut horizontal or vertical. He made it vertical and it is okay with the brace. I have been wearing it only when going in the car or for a walk to limit how long it is on. As he had said before, the chunk was cancer but a different kind than either of the other two. He took it to cancer board and the consensus was to do genetic study. (Interestingly at the hospital in Bakersfield cancer board meetings are on Wednesdays too.) The study would include testing for the BRC1 gene and looking at family tree for all types of cancer. Should be interesting. Mom did lots of work on geneology but I don't know if she made any notes on cause of death. She gave all of us the family tree and I also have her working notebook. It is a 4 inch thick binder that is full. Sounds like work for some lucky person. Just might have to get my sister to come up again to sort through the messy family tree. Stick with me and life will not be boring.