At 3:54 this afternoon I lost my hero, my lover, my best friend. She flew home on butterfly wings and now is soaring with the angels. After she graduated, Shan and I washed her with lavender water and anointed her with rose oil. She looked beautiful. Her suffering is over and she is experiencing an unspeakable love. It was a wonderful 23 years. Now I learn how to live life without her. I don't want to.
Thank you for all your prayers and support - I know she was well loved.
Janet & Joanne
Tuesday, October 16, 2012
The Last Few Steps
Joanne and I had a very long, challenging night. She became very restless and agitated and the morphine did not appear to be working. Today two hospice nurses came out, along with our friend Shan. We added some drugs to the mix and now Joanne is much more peaceful. She is no longer responsive and her spirit is about to take wings. Shan is staying here with me (you can relax, Laura, and enjoy your trip!) and we will midwife Joanne back to Source. I hope those entities are ready for Joanne's light - it's a bright one.
Monday, October 15, 2012
Resting comfortably at last
Thank you everyone for your kind, loving words. I read them to Joanne with tears streaming down my face.
We have finally found the right drug combination which has ended the relentless vomiting. Starting yesterday afternoon, she is getting a morphine drip and another drug which has allowed her to rest peacefully. We are both getting much needed sleep! She has moments of lucidity but is mostly sleeping. It was so agonizing to watch her suffer and feel so helpless. Hospice is such a blessing.
Thank you again for all your support, in its many forms. I am so blessed.
We have finally found the right drug combination which has ended the relentless vomiting. Starting yesterday afternoon, she is getting a morphine drip and another drug which has allowed her to rest peacefully. We are both getting much needed sleep! She has moments of lucidity but is mostly sleeping. It was so agonizing to watch her suffer and feel so helpless. Hospice is such a blessing.
Thank you again for all your support, in its many forms. I am so blessed.
Thursday, October 11, 2012
The Last Chapter
It is with much sadness that I announce the beginning of the last stage of this 5 1/2 year journey.
On Monday we made the difficult, but necessary, decision to discontinue all TPN and hydration. Joanne's body is shutting down and cannot handle the fluids. The vomiting is creating so much suffering. We are now giving a drug IV that will hopefully dry up all the fluids in her body so the vomiting of stomach acid will stop and give her some relief. The consequence of the drug is a very dry mouth and we are attempting several strategies to help her with this side-effect.
Her strength is rapidly ebbing. We are spending our time reminiscing, looking at photo albums and watching the TV series "Parenthood" on DVD.
We enjoyed a week long visit from Joanne's other sister, Carol, last week. Her brother and sister-in-law and niece also came for a visit.
Please feel free to leave comments for Joanne - I will be reading them to her. Socializing takes too much energy these days, so we are restricting visits to people willing to "sit" and be with her when I must leave the house.
Please hold us in your prayers - for strength, comfort and courage as we walk these final days together.
On Monday we made the difficult, but necessary, decision to discontinue all TPN and hydration. Joanne's body is shutting down and cannot handle the fluids. The vomiting is creating so much suffering. We are now giving a drug IV that will hopefully dry up all the fluids in her body so the vomiting of stomach acid will stop and give her some relief. The consequence of the drug is a very dry mouth and we are attempting several strategies to help her with this side-effect.
Her strength is rapidly ebbing. We are spending our time reminiscing, looking at photo albums and watching the TV series "Parenthood" on DVD.
We enjoyed a week long visit from Joanne's other sister, Carol, last week. Her brother and sister-in-law and niece also came for a visit.
Please feel free to leave comments for Joanne - I will be reading them to her. Socializing takes too much energy these days, so we are restricting visits to people willing to "sit" and be with her when I must leave the house.
Please hold us in your prayers - for strength, comfort and courage as we walk these final days together.
Tuesday, September 25, 2012
Good and Bad News
I know it's been awhile since I posted - I apologize. The days have flown by. I am still coping with my incredible sadness by throwing myself into finishing house projects, gardening, and my business. Pictures to come in the near future. . .
The bad news first. Joanne is now unable to really eat anything at all without it coming back almost immediately. Even without eating, she is vomiting stomach acid about seven times a day which is exhausting. The acid, which is just the stomach doing its job, has no where to go because of the obstruction. Even though she is still on TPN, she is getting weaker. It is challenging and sad to give up one of life's pleasures - food. Many thanks to Mary Swenson for her home-made ice cream. Even though it comes up, it soothes Joanne's throat going down!
Good news. In spite of her growing weakness, Joanne is continuing to make art for future non-profit auctions and for anyone who wants them. She is making bead bracelets and knitting projects. It's really fun when people come to visit and buy bracelets to take home with them. They will always be able to wear a bit of Joanne wherever they go!
The bad news first. Joanne is now unable to really eat anything at all without it coming back almost immediately. Even without eating, she is vomiting stomach acid about seven times a day which is exhausting. The acid, which is just the stomach doing its job, has no where to go because of the obstruction. Even though she is still on TPN, she is getting weaker. It is challenging and sad to give up one of life's pleasures - food. Many thanks to Mary Swenson for her home-made ice cream. Even though it comes up, it soothes Joanne's throat going down!
Good news. In spite of her growing weakness, Joanne is continuing to make art for future non-profit auctions and for anyone who wants them. She is making bead bracelets and knitting projects. It's really fun when people come to visit and buy bracelets to take home with them. They will always be able to wear a bit of Joanne wherever they go!
Thursday, September 13, 2012
A Hospice Salute
I've often said in the last few months that I need a "God with skin". We have several "Gods with skin" show up each week in the form of Hospice staff. I've always loved Hospice, but now that I am on the receiving end of their support, my appreciation has deepened.
A huge thank you to our nurse, Helene. She is a friend and a grad of the ENW courses and we feel blessed to have her visit us each week and monitor Joanne's health.
Our chaplain is also a friend and a member of our women's spirituality group - thank you Cheryl!
We also have a social worker, bath aide and volunteer (when we need it). The hospice physician made a house call. They provide so much other support. They deliver all Joanne's medications to the house - no more trips to the pharmacy. They have provided us with a wheelchair and other appliances. They handled the Handicap sticker for the car.
The average hospice stay is about 72 hours. If people really knew how much support they provide in creating quality of life and palliative care, they would call Hospice much sooner. Graduating from Hospice is always a possibility also!
PS. My beloved Subaru came home from the hospital today - yay!!!
A huge thank you to our nurse, Helene. She is a friend and a grad of the ENW courses and we feel blessed to have her visit us each week and monitor Joanne's health.
Our chaplain is also a friend and a member of our women's spirituality group - thank you Cheryl!
We also have a social worker, bath aide and volunteer (when we need it). The hospice physician made a house call. They provide so much other support. They deliver all Joanne's medications to the house - no more trips to the pharmacy. They have provided us with a wheelchair and other appliances. They handled the Handicap sticker for the car.
The average hospice stay is about 72 hours. If people really knew how much support they provide in creating quality of life and palliative care, they would call Hospice much sooner. Graduating from Hospice is always a possibility also!
PS. My beloved Subaru came home from the hospital today - yay!!!
Sunday, September 9, 2012
Losses
One of the hardest parts of this dying thing is facing increasing losses, almost on a daily basis. Loss of vitality, well-being, being able to eat, being able to drive, etc. In the last two days, Joanne has had two serious falls. One was from the one step on our back deck - she fell backwards and hit her head and hurt her back.
Yesterday, she was walking from the bedroom into our master bathroom and fell forwards, hitting her head. I was in the bathroom at the time and the suddenness and force of the fall were very scary.
So, new rules. No more walking off the deck. But what next? What if she falls when no one is here and she can't get back up? The path we are on feels like it is getting bumpier. We will soon need to have folks here when I have work outside the home.
Joanne's sister, Eileen, was here for one week from New York. It was great having her here - she and Joanne are very close and she was a delightful guest.
Last night Joanne and I went to the benefit concert at Boundary Bay for Marriage Equality. It was touch and go about her being able to go, but all went well. Her wheelchair was comfortable and she was able to see and enjoy many friends and hear great music. It's so exciting to think that in the near future everyone in Washington State may be able to legally marry the person they love.
Yesterday, she was walking from the bedroom into our master bathroom and fell forwards, hitting her head. I was in the bathroom at the time and the suddenness and force of the fall were very scary.
So, new rules. No more walking off the deck. But what next? What if she falls when no one is here and she can't get back up? The path we are on feels like it is getting bumpier. We will soon need to have folks here when I have work outside the home.
Joanne's sister, Eileen, was here for one week from New York. It was great having her here - she and Joanne are very close and she was a delightful guest.
Last night Joanne and I went to the benefit concert at Boundary Bay for Marriage Equality. It was touch and go about her being able to go, but all went well. Her wheelchair was comfortable and she was able to see and enjoy many friends and hear great music. It's so exciting to think that in the near future everyone in Washington State may be able to legally marry the person they love.
Saturday, September 1, 2012
Total Parental Nutrition - Meal In A Bag
Some of you have asked me what TPN is. Here is a picture of Joanne hooked up to her 12 hour "meal".
I inject vitamins and a drug into the bag that is pre-prepared by a nutritionist. We hook her up to a pump at 9 pm, she gets nourished while she sleeps, and unhooks at 9 am. It goes directly into her port that is in her chest (where she got her chemo). She can put the bag into a back pack if she doesn't want to push the pole. We are both getting very attached to the sound of the pump. It's like a heartbeat - every two seconds - and has become a comforting sound during the night!
A shout-out to Infusion Solutions. Their business is allowing people to receive IV meds and nutrition at home. They prepare the solution, in consultation with a physician, and deliver 5 days worth of TPN and supplies at a time. We are so glad we have an extra refrig in the garage to hold the bags! A nurse comes out once a week to change her dressing.
She will stay on this until it is no longer contributing to her quality of life. Unfortunately, she is getting increasingly more weak and tired and we are both afraid that this might be irreversible. We shall see.
The good news is that except for frequent vomiting and reflux, she is in NO pain and is on no pain meds.
I inject vitamins and a drug into the bag that is pre-prepared by a nutritionist. We hook her up to a pump at 9 pm, she gets nourished while she sleeps, and unhooks at 9 am. It goes directly into her port that is in her chest (where she got her chemo). She can put the bag into a back pack if she doesn't want to push the pole. We are both getting very attached to the sound of the pump. It's like a heartbeat - every two seconds - and has become a comforting sound during the night!
A shout-out to Infusion Solutions. Their business is allowing people to receive IV meds and nutrition at home. They prepare the solution, in consultation with a physician, and deliver 5 days worth of TPN and supplies at a time. We are so glad we have an extra refrig in the garage to hold the bags! A nurse comes out once a week to change her dressing.
She will stay on this until it is no longer contributing to her quality of life. Unfortunately, she is getting increasingly more weak and tired and we are both afraid that this might be irreversible. We shall see.
The good news is that except for frequent vomiting and reflux, she is in NO pain and is on no pain meds.
Friday, August 24, 2012
Creating a Safe Place
Wow, the last week has been a whirlwind and a blur. It didn't help that last week I had my first auto accident in my 65 years. I was T-boned by a young kid who was leaving a fast food restaurant and didn't see me coming down the street. Fortunately, neither myself nor my passenger were injured - just an assault to the adrenals! My car will be in the shop for a month so can't transport my kayak or my bike. At least I have a rental car. Bad timing on this event. . .
As my favorite coping mechanism is working on house projects, I outdid myself in the last week.
The Japanese garden is almost completed, and mulch finally applied - thank you Tim Davenport!
Two good friends from Nova Scotia flew in for a visit. Nat is a contractor whose speciality is building ADA houses. She and I made the house a lot safer and easier for Joanne. She is now having trouble going up stairs and we have three of them from the garage to the house. We created a hand railing in the garage. We also installed grab bars in the bathroom and shower. We also installed another rain barrel system for the house. They were only here about three days but we had a great time working together and laughing much. Thanks Mara and Nat!!
An agreement was reached with Group Health to allow Joanne to stay on her TPN nutrition - she is hooked up for 12 hours a day. This is providing a baseline of nourishment and some quality of life.
She is able to make one outing a day - usually to a restaurant for a taste of her favorite food, or the Pickford for a movie. We are still taking it one day at a time.
As my favorite coping mechanism is working on house projects, I outdid myself in the last week.
The Japanese garden is almost completed, and mulch finally applied - thank you Tim Davenport!
Two good friends from Nova Scotia flew in for a visit. Nat is a contractor whose speciality is building ADA houses. She and I made the house a lot safer and easier for Joanne. She is now having trouble going up stairs and we have three of them from the garage to the house. We created a hand railing in the garage. We also installed grab bars in the bathroom and shower. We also installed another rain barrel system for the house. They were only here about three days but we had a great time working together and laughing much. Thanks Mara and Nat!!
An agreement was reached with Group Health to allow Joanne to stay on her TPN nutrition - she is hooked up for 12 hours a day. This is providing a baseline of nourishment and some quality of life.
She is able to make one outing a day - usually to a restaurant for a taste of her favorite food, or the Pickford for a movie. We are still taking it one day at a time.
Thursday, August 16, 2012
Simple Gifts
Joanne is spending much of her precious energy these days discerning how to distribute her possessions to the people and organizations in her life. We obviously have handled all the legal will stuff. Now she is experiencing joy and delight in gifting her art supplies, clothing, art and accessories. Generosity is certainly its own reward, and she particularly enjoys experiencing the delight and gratitude of the recipients. This process is bittersweet, tinged with sadness and poignancy.
This dying process has forced both of us to complete many things we have started, purge possessions and tie up loose ends in our lives. This is one of her many gifts to me.
This dying process has forced both of us to complete many things we have started, purge possessions and tie up loose ends in our lives. This is one of her many gifts to me.
Friday, August 10, 2012
Celebration!!
After a year on the market, our Lummi Shore House has sold, and we signed the closing papers today!
Thank you Sharon and Dawn!
As part of my visualization for the desired end-result, I have been seeing Joanne and I toasting and enjoying great food and celebrating the sale. So, today we did just that. After signing the papers we went to the Lighthouse Restaurant at the Bellwether Hotel, sat out on the sunny patio and indulged in Happy hour treats. I had wine, Joanne had ice tea, she ate a few bites of several appetizers - I cleaned up the rest! When we came home, we discovered a balloon fairy had tied several celebratory balloons to my car - anonymously. Thank you, whomever you are!
Thank you Sharon and Dawn!
As part of my visualization for the desired end-result, I have been seeing Joanne and I toasting and enjoying great food and celebrating the sale. So, today we did just that. After signing the papers we went to the Lighthouse Restaurant at the Bellwether Hotel, sat out on the sunny patio and indulged in Happy hour treats. I had wine, Joanne had ice tea, she ate a few bites of several appetizers - I cleaned up the rest! When we came home, we discovered a balloon fairy had tied several celebratory balloons to my car - anonymously. Thank you, whomever you are!
Yesterday we went on Joanne's other "make a wish" field trip - to Duvall, Wa. She wanted to see Carol P's. garden and have lunch with three dear friends. We then drove a bit farther to see Erin's new house and her horse. She was quite exhausted at the end of the day, and it was worth the effort - a good time was had by all.
Wednesday, August 8, 2012
A Garden Ritual
Today she is receiving a psychic surgery from John of God. The day will be spent in meditation and sleep. We will all hold the vision of a healing on all levels.
Tuesday, August 7, 2012
An Outing to Anacortes
This past Saturday Joanne and I made our annual trek to the Anacortes Art Festival. Joanne enjoyed seeing all the booths while being pushed around in a wheel chair. The crowds parted in front of us and she had a great viewpoint! We found our favorite artist and bought another Buddha for our garden.
She continues to get her nutrition directly into her veins via TPN. Her weight is holding and some days her energy is good. A big challenge is her hunger - both physiologically and psychologically - so she eats small portions of her favorite foods and then it all comes back up within 24 hrs. It's worth it to have the pleasure of eating.
Thursday, August 2, 2012
The Journey Continues
It's been over a year since our return from Brazil. Joanne has been heroically enduring almost continuous chemotherapy since our return. The drugs have finally stopped working and this monstrous cancer has roared back to life.
Joanne's biggest challenge right now is her inability to retain food and fluids. She is currently getting proteins, fats and vitamins through an IV (TPN) for 18 hours a day. This is giving her a bit more energy and has stopped the weight loss for the time being.
We are experiencing a shower of blessings:
Joanne is now on Hospice and this feels like we were scooped up and put in a life raft with all the amenities! We feel so cared for and supported by this wonderful team.
I will be posting regularly on this blog - feel free to leave us a comment - we love hearing from you.
Joanne's biggest challenge right now is her inability to retain food and fluids. She is currently getting proteins, fats and vitamins through an IV (TPN) for 18 hours a day. This is giving her a bit more energy and has stopped the weight loss for the time being.
We are experiencing a shower of blessings:
- In October, we moved from our Lummi Shore House (23 years) to a wonderful house in town. The timing was perfect - Joanne had enough energy to move. We found our new house the first day we started looking - the first day it was on the market. We love being a mile from downtown, but on a dead-end, quiet street in the Arboretum.
- We finally sold our Lummi Shore house last week. Cash, no contingencies, no work order! The buyer is a fabulous author, painter, gardener, spiritual teacher.
- Many major house projects have been completed that add beauty to an already wonderful sanctuary here at 705 Newell. It's been a joy to work with the artisans who created these projects.
- We have felt so supported, emotionally and physically, by our friends and family.
Joanne is now on Hospice and this feels like we were scooped up and put in a life raft with all the amenities! We feel so cared for and supported by this wonderful team.
I will be posting regularly on this blog - feel free to leave us a comment - we love hearing from you.
Monday, May 2, 2011
Home
We made it home safely and easily Sunday afternoon - and are very slowly working our way back into our "past life".
Our Saturday tour of the most breath-taking sites in Brasilia was wonderful. We visited the Sanctuary of Dom Bosco, the Metropolitan Cathedral and Temple of Good Will. All were knock-your-socks-off beautiful.
Energy-wise, it was a bit assaultive to go to the airport after leaving the special vortex of Abadiania. We came home with many crystals, email-addresses, and warm memories. Now the challenge is integrating all of this in our lives and continuing the healing.
Thank you so much for your prayers, your support, and your posts to this blog.
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