I know this blog has generally been upbeat, a mood which does not reflect the attitude of everyone who reads it. You probably wonder if there are some hard times for Marilyn and me. The answer is yes, but the river of grace is so full that they seem like mere ripples. Let me list some of the discomforts and we will promise to keep you posted as they grow.
Pain: I have very little pain. I am taking 2.5 mg of Methadone per day (half of the smallest dose). To this point it has managed two areas of discomfort very well. The methadone seems to have few side effects. I have a bone ache in my left sacroiliac joint and in my right shoulder. If these become too uncomfortable I use a heating pad and a couple of Ibuprofen. That generally works well. I'm also taking some steroids (please don't report me to the baseball commission). The steroids have an effect on sleep so I am using Tylenol PM at bedtime after a month or so off sleeping medication. There are more effective options when that doesn't work.
Appetite: I have been eating normally, well almost indulgently for a couple of weeks and hope the appetite continues to be good. Do you know that Ben and Jerry's Cherry Garcia is available in little individual cups with spoon inside? I'm hooked and fear that it is a test market which will soon go away. For a few months I have craved a fresh orange each morning before breakfast and with the great oranges available now, that is a wonderful way to start the day.
Weakness: One of the main downsides of the disease is that I have very little stamina. If I walk upstairs for something I need to sit down for a few minutes to catch my breath. When walking, the slightest incline winds me. I can't just jump up and do something without planning the moves and making allowance for catching my breath. I suspect this will become worse and it will be difficult for me to get up and down stairs . . . but we'll cross that bridge when it comes.
Emotion: From time to time, Marilyn and I have weepy mornings as we think of the things we love to do which will no longer be possible. No wandering off in the car for a few days to see the world and let our whim determine our destination. No trip to Singapore to see Dani, Charles, and James. No conversations between a couple who have always been one another's best friend. These are good times because there is sadness in parting, and because I can't be here for Marilyn in the future. Somehow, crying together seems to be a holy moment of sharing our deepest love. Today Martin sent me a mock-up of the bulletin for my Celebration of Life. I cried when I saw the colophon on the back. It was the Wine Cellar Press which was my colophon years ago when I had a little private printing press as a hobby.
Now set those present discomforts alongside the gifts which keep flowing into our lives. Two flower arrangements this morning, two lovely cards, several emails and the constant loving response to the blog.
This Friday my sister-in Law Alice, Nieces Connie and Amy, and grand niece Emily will arrive from across the country for a short visit. Dani and James fly in from Singapore Saturday for two weeks, Martin will be here as well and Jeni and the granddaughters. Later this month California friends will be arriving and in May my sister Pat and niece Mary will arrive.
Life may be diminished but it is still full and blessed.
Posted by Donel at April 6, 2005 01:44 PMYou don't know me, although we have met a couple of times. I have the honor of being Jeanne Quinn's mother and so I also have the honor and joy of being Naill and Aidan's grandmother. I am also an oncology nurse and I thank God that I have been able to do that because I have met some wonderful people and received many blessings. I'm so glad you have joined up with hospice. You will find them a wonderful, caring group of people.
As I said before, we have met a couple of times. Once was when Jeanne and the boys stopped by the Church office and I happen to be with them. I'm not sure what the reason was, unless it was to let Aidan deplete the candy supply in your secretary's office, but we were there. The second time was when I had the joy of singing with Jeanne and her sisters for one of your services. I enjoyed your sermon very much....something that could be applied to everyday living....helpful. I believe your new building was under construction at the time.
Jeanne told me about your web site and I am so glad that I have been able to share in your thoughts and comments and the comments of your congregation. What a wonderful gift you are giving to your congregation. I hope that someone is making this into a book so that the generations that follow will be able to know you. I wish that I could have known you but I'm greatful that Jeanne and her children have had the blessing of being part of your flock.
My thoughts and prayers will be with you and your family as you continue your journey and I know that God is there walking beside you.
Sincerely,
Barb McDonald RN
Parish Nurse Redmond United Methodist Church
Dear Don,
Your comments about Cherry Garcia and oranges made me smile. Those are exactly the foods I craved when I was pregnant. Seems there's something about that specific sugar/fat/vitamin C combo that must be important for life's transitional points.
Blessings,
Janet
Posted by: Janet Craswell at April 7, 2005 06:46 AMDear Don,
I have been following your dance via the blog since its beginning. I have also not contributed, because of not knowing what to say. My heart is always so full.
I am prompted to comment regarding the addition of Hospice to your lives recently. What a truly wonderful gift those people give to all of us. One of our close neighbors is a Hospice nurse.
Last year in February I hastened to the bedside of one of my dearest and long-time friends in Forest Grove, OR. There I met Deva, SallyJo's Hospice nurse. Sally's home was constantly filled with soft music playing and close friends coming in quietly to be with her. I was with her when she went to God and was awed by the beauty and peacefulness of the moment.
Deva is also the dulla for our daughter Melissa as she and Blake are expecting their first baby in June. I am struck with how God gives certain people gifts to help us all through the ending of days as well as the beginning of days.
My prayers and love are with you and Marilyn, Dani, Jeni, and Martin these days.
Blessing,
Peggy
Thank you for sharing the ongoing story of your journey toward the transition to the next plane of existence. Like some of your other readers, I have helped a parent along that same road. My mother's final month, spent in a comfortable in-patient hospice where she went with the belief she had only days left, was full of mysteries and surprises. I wish she had been able to tell her story as eloquently as you are telling yours. I wish you peace.
Posted by: CC at April 7, 2005 09:10 AMDear Donel and Marilyn,
You know that our prayer for you has been for strength and courage, for peace and acceptance. We can see that God has granted you these qualities in great abundance. However, we will keep praying this prayer and hope that some of it will rub off on us as well as we struggle with accepting your ebb of life. You remain a great teacher and role model for us. We love you.
Wow! I'm ever impressed... you're taking less than 1/3 the dose of Methadone that Darling Miss Amelia was most currently on! I joke that by the time she's a rebellious teenager (no! not her!!), drug use won't really be anything to try to sneak around, having tried it all as a toddler!!
Claire and I are planning a trip to Bellingham over Memorial Day weekend, and we're hoping to get a chance to see you while we're there.
Amelia got a Barney as big as her in the mail yesterday that did a world of good to cheer her on her own road to recovery. We'd be glad to send one along if you'd like -- we've also got a fetching pair of Barney slippers. Any interest?
Amelia's funny comment of the day to bring another smile to you, said while she was at the hospital for a check up to see if we could get rid of her PICC line: "You aren't going to do anything with a butterfly needle, huh? I don't like butterfly needles. Well, only the ones that fly, and are green. But they don't live so well in the hospital."
Dear Donel and Marilyn: Gordon Laird steered me here. I am grateful. As someone else said, my heart is full. I grieve and I feel uplifted.
Since it's easier to ask for forgiveness than to ask for permission, I've written about the message you are sending through the blog -- the same kind of message you two have always shared.
My Easter3 teaching meditation is the first note you will find on and it is archived there in "Gospel Lectionary Companion."
Judy and I count knowing you two as a very high point in our lives. Love to you both, Bob.
Posted by: Bob Cramer at April 9, 2005 11:33 AM
DEar Donel,
I am glad to be able to log on here at the Incheon Airport. I will birng your blog update to members of the Chengdu 15 who know you: Carol Stanley and Deanna Murray.
We spent the night on the plane and now people are awaiting the flight to Guilin.
Several people of our Women-to-Women Mission Trip (ages 15-78) have referred to this expedition as an adventure. You too are adventuring, going where Donel has never gone before.
Thanks for being our tour guide, teaching us what sites to be attentive to, warning us of rough places, and sharing, crazily enough, your enthusiasm for the trip.
Love and hugs from me and Hairball,
Jennifer
Posted by: Jennifer in Korea at April 6, 2005 03:40 PM