Today was hard. Guy had several visitors throughout the morning. Even though he was not really aware, I am certain that he appreciated every effort that was made to come and visit. His connection to friends is what will feed his soul, right to the end.
The hospice nurse came by at 1:30. I loved her approach to our situation. Her main concern was Guys discomfort, both pain and anxiety. We scrapped the oxycodone and went to small doses of morphine under his tongue. She dosed him until the furrow in his brow relaxed. Ahhhhh. Then she helped us adjust his bedding to make it more comfortable and gave us the ability to move him without yanking on his limbs. When she left we felt in better control of his comfort which after all is really the only goal at this point.
I asked her a few times throughout her visit how much time she estimated he had left. I was told these nurses have a good sense of this. Unfortunately her answer wasn’t what we wanted, probably a few days, not weeks. I don’t think this really surprised Pete or me but it did send us into a new wave of sorrow. I called Kate and Matt, they are flying in tomorrow. Pete called sister Dana and his mom. Then we looked at each other and steeled ourselves. We are going to make his time here as comfortable as possible.
His best friend in Eugene,Bagasha, is with him now. Just sitting, holding his hand,rubbing his back. Guys connections to his friends is extraordinary. He thrives off them, they give him joy and purpose and a reason to laugh out loud. I love the Irish saying “may your Home always be to small to hold all your friends” We have a pretty big house and this holds true.
But at this time I’m going to stop all visits from friends, our family needs some private time together. I keep talking to him trying to make some sense of it. Today he did have a few lucid moments, during one he held me and kissed me and told me how much he loved me. I will hold on to that forever.
Today Guy received the Sacrament of the Anointing of the Sick. John arranged for Father Peter from the Newman Center to come and give the Sacrament. Father Peter asked if Guy would like to receive the Sacrament and Guy said that he would be honored. Although half asleep he participated in the prayers, repeating the words that have given him so much comfort and strength throughout his life. It was beautiful and touching as Father Peter anointed Guys forehead and hands. We gathered around him and prayed together.
That was the spiritual highlight of the day and the physical highlight was that we got a hospital bed delivered. Once set up in the living room by the fireplace Guy seemed immmediatley comfortable. He is now able to receive visitors easily and rest in a very familiar spot…in front of the TV.
We had a few visitors through the day. Just a few though as Guys energy level won’t tolerate much. It is so cute how he greets his friends and always asks how they are doing, bringing up people or places they have in common. He takes great pleasure in these conversations even though he is so sick and fades in and out of awareness. He also spoke on the phone to some of his favorites.
His condition remains unchanged for better or worse. I massaged his sore back and legs throughout the day. We are working at getting his pain and anxiety meds properly dosed, there is a fine line between taking the edge off and sleeping all the time. It is getting better.
My two gifts of the day came at the end. Some best friends took me out for dinner and vino. While we mostly talked about sickness and dying it was so great to duck out for this social time to revitalize my spirit. The other gift was that John asked if he could sleep on the couch and take the night watch over Guy giving me a night off. Since a John is leaving tomorrow it will give them some quiet time together. John looks at Guy with tenderness and love and hope and faith. I love that about him.
We had a peaceful day today. Our children headed back to their homes in Seattle. Although I miss their presence I am happy they have homes and loved ones( and jobs!). Kenny was by briefly in the morning to say farewell to Guy then headed back home to his family which left me and Pete and John and Guy.
For most of the morning the boys hung out with Guy up in our bedroom. I went for a walk with my regular walking group. These women are a comfort and support during this most incredibly difficult time. We talk freely about all things involving life and death and family and occasionally branching into politics. I need the companionship and fresh air.
The afternoon centered around football on tv. While I was doing some reading the guys, all three, took naps in the bedroom, Guy and Pete on the bed and John on the floor. Some friends stopped by for a brief hello and hug. Later we watched those playoff games, the only team I cared about was Clemson because of my dear friend Barb (sorry Barb but it didn’t look like they were going to win when I went to bed)
Guy is about the same, drinking a little, not eating, sometimes lucid but more often funnily confused or flat out hallucinating. All three of us took turns holding his hands, giving him small drinks and just loving him. He was comfortable with us and us with him. We all feel honored to be able to share this precious time with this special person. I will always cherish the memories of the simplicity of the day.
Love to all of you.
Today started with friends and a big breakfast, waffles, sausage, eggs, coffee and juice. Everyone was bustling around the kitchen, cooking and enjoying the fellowship. I retreated upstairs to keep Guy company. He tends to get agitated when left alone for long so my presence helps calm his worries. Then our friends left, Kate and I went for a walk and Matt and Gwen took a shift hangin with the old Guy.
Although I was looking forward to it I was also dreading the visit from hospice.
They came at 1pm, a nurse and a social worker. A wink of the eye and a twist of the head soon gave me to know I had nothing to dread. Oh wait, wrong story. But right feeling. These compassionate women explained what their program offered and answered all our questions. It is really a remarkable gift to have someone with experience help you along this frightening path. I feel assured that they will be with us every step of the way. Another blessing!
Guys day was ok, not great, sleeping and painful and often not coherent. He did have some nice conversations with Kenny and Paul and Myrna. In the afternoon dear friend John Gregorek arrived and a little later, brother Pete. He had some tender moments (and a few jokes) with them as both became immediately aware of how sick he is.
Our kids leave tomorrow, John will be here for a few days and Pete longer. Lots of you know our children, they have been nothing short of amazing. They are tender and caring with their dad, supporting and helful with me and able to navigate their own feelings with grace. Although they are heading back to Seattle tomorrow they will be back next weekend. I am grateful for them.
My most poignant minute of the day came when John and I were having a discussion, one of us on each side of Guys bed. John is a man of strong faith and I was asking him about last rites, Kate and Matt had asked and I knew John would have the answer. All of a sudden I just looked at him and through my tears said “John could you ever have imagined we would be having this discussion over this man.” No words can make sense of it.
You know in Peter Pan when Tinkerbell is dying and the audience has to clap to bring her back? Guy is our Tinkerbell, his light was slowing waning and your good wishes and prayers are bringing him back!
He had a better day today. That is a relative term since he was coming from being down pretty low but we had several visitors and while he started out slow and disoriented by the time Kenny Martin left at 8pm Guy was doing some joking and jiving. We are not celebrating yet because he is still disoriented, in significant pain and not eating or drinking much. It was just so nice him see him engage a little. Kevin and Helen, Beppe and Laurie and then Jim, Cary and Kenny all brought a smile to his face. We enjoyed the company and seeing a little twinkle in his eye.
Also he only took 2 showers.
Tomorrow we will have more visitors. I try to prepare him for company but he doesn’t remember and is always surprised by who shows up. I also was able to get a hospice appointment in the afternoon so that will be a comfort to have the experts evaluate him.
He is a cherished gift to all of us who know him. It is so comforting to hear so many stories of how he has touched your lives. Until till tomorrow…keep the faith.
I expected today to be quiet. Kate and I hanging out, taking down Christmas decorations while Guy rested and slept. That is pretty much how it went only because we are stuck in medical gridlock
This morning Guy seemed even less responsive, he was asleep most of the morning, and I don’t mean a restful sleep but tossing and turning, labored breathing, talking nonsense and grimacing. He was not interested in food or water. Kate and I decided I should call the Cancer Center and inquire about hospice. I didn’t think he was ready but decided an evaluation would be helpful. Well, they said insurance won’t pay for you to have hospice and still see your Dr. I certainly wasn’t ready to give up on treatment so we put that idea on hold and planned to see the Dr next week as scheduled.
As the day went on we realized Guy was not improving, no food or water, mostly asleep and still talking nonsense. He did develop this funny idea every time he woke up that he needed a shower. Rather than argue I just let him do it. He had 4 showers today. Kate gave him a kiss on the head and said he smelled wonderful!
I called the Cancer center again late in the day. I just don’t know what help he needs and from who? But it is apparent that he needs help. I spoke to Dr Lonergan, told him Guy’s symptoms and discussed options. We decided that starting hospice might offer some relief, if Guy improves then we can take him off hospice and he can see the Dr again and get more treatment. Of course by this time hospice has no availability till next Tuesday. Does any of this make sense??
Meanwhile Matt and Gwen arrived from Seattle. We had a nice dinner and laughed and told Guy stories (I cried some) He said he is a blessed man. I believe we are a blessed family. We feel so supported from friends around the world. It warms my sad heart to hear from all of you and know that you are holding him close in your hearts and prayers.
I am still working on getting a hospice evaluation sooner with some folks I know at the hospital. Stay tuned for tomorrow’s episode….of Cancer Sucks!
Arb and I met with Dr Lonergan this morning. He is a compassionate and brilliant man, the perfect combination for the person in charge of your loved ones life. We had a frank discussion looking at immediate needs and long term prognosis. His immediate needs involve his confusion and his difficulty swallowing. We addressed those issues then discussed immunotherapy, the pluses and minuses and other possible options.
We decided to start it (Optivo) right away. The positives outweigh the negatives. He has a 1 in 3 chance in this therapy prolonging his life. Without it Dr estimated Guy has 4-6 weeks to live. As our sweet boy Matt said ” Dad will be that 1 in 3 Mom” like the stubborn man we all know. Then we went upstairs and he got his first dose. He will get an infusion of Optivo every 2 weeks. Good to have insurance as this drug costs 200,000 a year!
During his infusion he got really agitated and confused and kept wanting to leave with the IV in his arm. I talked him down several times and regretted that I didn’t put his Ativan(for anxiety) in my bag. He fell asleep when it was almost over, like the little kid on the plane that cries the whole flight then falls asleep as the landing gear goes down.
So here we are, back at home. Kate and her BF, Tiluck, are here and made dinner (and did the dishes) Guy wandered around a little, wouldn’t eat or drink and now is asleep again. This is so heartbreaking and maybe a blessing. He does not realize how sick he is. We circle around him in support and we know that you are also part of that circle.
Matt and GF, Gwen, are driving down from Seattle tomorrow and his buddy forever, Mike, is coming Saturday. Then brother Pete comes on Sunday. He and sister Dana plan on alternating weeks here as long as need be. Everybody is asking what we need and right now we don’t need much. Our friend Myrna will start/ meal calendar as our needs become more apparent. We love you all and feel the love and prayers coming from around the world for this man I love with all my heart.
Until I have more news or a need to write,
Keep him in your prayers.
P.S. Guy does not qualify for clinical trials due to his current condition.