Just a quick update, Julie began hospice care on Friday, and she will be able to continue her IV nutrition as long as she wants. She will probably continue it until she becomes too delirious to make decisions and to have meaningful interactions. She understands that at that time, I will stop it for her. I don’t think she will decide to stop it before then, despite what she is going through.
Almost all of our children were here this weekend. I got Julie to come to church with us, and we sat together and watched our son Nathaniel bless the sacrament, and our son Christopher bring it to us. All weekend the older children once again got to see and talk to their mama. Heidi helped her with her make up, massaged her legs and painted her nails. It was an important visit for them, and they left in peace.
Julie had an appointment at the Teton Cancer Institute today, probably for the last time. Her oncologist told her that going to Houston for more PRRT treatments is probably no longer an option. Those treatments probably won’t help enough and she might not survive another treatment. This is what we suspected, no real news, but when we got out to the car, she still sobbed, “Well, this is it, I am going to die.” She was so sad. Her face showed the contortions of heartbreak and anguish. I got as close as I could in our truck, I just wanted to squeeze her so hard, but that would break her bones. Instead I just had to tell her how much I’d like to squeeze her.
After some gentle words we drove around together for the rest of the afternoon and evening. While I took care of errands she wanted to stay with me and ride shotgun, rather than go back to bed. Among other things, we drove to look at a cemetery, where she and I would lie together someday. She seemed to like it and was interested to see recent headstones of friends buried there also too soon. It seemed strangely comforting for her I think.
I doubt I will be writing again soon. I really don’t know how long this will last, while she gets IV nutrition. I asked her if she wanted to survive through the holidays. She said, “No that really doesn’t matter.” There is nothing really holding her back now, except family. When the time comes, I think she will be ready.
A week ago today, we were talking to Julie’s oncologist about her worsening condition. She had mostly recovered from her pneumonia diagnosed a week earlier. Breathing was good, oxygen levels good, but pain, fatigue, nausea and general fatigue unrelenting. Her doctor kindly assessed her situation, and expressed doubts that she would ever improve significantly. With much empathy he discussed hospice care, and told her that it might be time, and that he would support starting hospice care if she wanted. She cried and nodded agreement. We left with that option in mind and with a plan to discuss it more and to let her doctor know what she decided. He made sure she knew that he was always there for her, and that this didn’t mean he was giving up on her.
Hospice care is end-of-life care. One of the goals of hospice is to help people die in peace and comfort. People receiving hospice care generally do not receive ongoing medical care designed to prolong life. Hospice medical care is provided to alleviate pain, suffering and to provide comfort. For Julie, this means that she would stop getting IV nutrition if she started hospice care. Since she is not eating, she would not live long on hospice care.
For the rest of the day, Julie avoided the topic of hospice care. Concentrating on a topic and making a complicated decision is hard. The next morning, I told her that I was going to let her doctor know what she wanted to do. She said, “I just can’t decide to do that (go on hospice care).” I said, “That is fine, you don’t have to decide now. We will just continue the present course and plan unless you change your mind.”
This past week, sometimes I think she is feeling a little better, but at other times she seems to be worsening. The roller coaster ride…only she is not happy, no thrills. Two days ago she told me that she wants it to be over, and would be ready for the end, if she wasn’t afraid of leaving us.
Last night she sobbed as she got into bed, and this morning she sobbed as she got out of bed. I gave her pain medication, and she slept. At lunch today, she did not want to get up, but I gently persisted and she sat at the table and we had lunch together, she ate very little. She cried off and on, and she asked me to read to her before I left, which I did for 5 minutes then put her back in bed before I went back to work.
Julie may not ever decide to leave this life. She might get to the point where she is unable to decide anything. I am not pushing her one way or another. I try to help her discover what she wants, without injecting my own opinion into it. That is hard, lots of conflicts for me. I hate that she suffers, she knows her pain, yet she chooses to endure it rather than end it. I just treat it as much as I can without totally making her unconscious all the time. Darn! This is hard!
This past week, we have talked more about positive outcomes, live or die. I have always been serious and sad with her. Now, for her sake, I am acting like a cheerleader, always trying to be upbeat and positive, hoping that it will rub off. Talking more about the miracle of Jesus Christ, paving the way for us to return to God. Talking more about happiness, life without pain. Talking about Julie sending her grandchildren into life. Even talking a little about what we will do after she leaves, living on with her loving memory and trying to make her proud of us always.
By nature Julie is a happy, fun loving, optimistic person. I have mourned with her extensively. I know we will yet mourn grievously. But for the moment we are fighting fear, doubt and despair. I will cheer for her, and help her have courage as she finds her way.
It has been a tough week for Julie. She has been having a harder time getting out of bed, and her appetite is completely gone, and she is very tired. She has been needing oxygen all the time, and occasionally she says it is hard to breath. Nine days ago her chest X-ray showed some fluid accumulating in her chest outside the lungs, and possibly a mild pneumonia. She was put on antibiotics and we stopped giving her IV fluids. At her appointment last Monday, it was decided to give her a blood transfusion, which we did on Tuesday. On Wednesday we starting giving her full time IV nutrition. Thursday she had a CT scan that showed increasing fluid in her chest, so that was drained, about 2 liters total. Her oxygen saturation showed a big improvement and no more complaints about breathing, at least for a day or two. Still, she continued to feel more “sick” and “bad”. She was off antibiotics Friday and yesterday.
Yesterday she stayed in bed until about 5 PM. After a shower, some visitors, and a drive, we sat in the living room together with the children until bedtime. We sent the kids off to bed, and then when I helped her get out of her chair I noticed she felt too warm, and she had a fever of 101. Because of everything that is going on, and with her port accessed, she is at increased risk of infection. So we went to the ER at about 11 PM. After her tests and X-ray, we found that she had pneumonia. She recieved antibiotics and we arrived home at about 3 AM. Then she couldn’t sleep…
Julie is trying so hard to hang on. Even through the pain and anguish she doesn’t want it to end. She has said a few things that really got my attention. Tuesday, as we were making our way to the car after her blood transfusion, she broke down and sobbed, “I just thought it would be easier, living longer.”
Early this morning as we were coming home from the ER she said to me, “I am ruining your life.” I told her to never say that. I hope she never feels that. I hope we can make her always feel precious and cherished, and not a bother in any way. She is always extremely kind, never cross or annoyed. Always so patient with us. She tells me all the time, “Thank you” and “I love you” in tones that are so earnest and so real and kind that printed word can’t really describe.
Just a few hours ago we had spent some more time talking with the children about how Julie is doing, and trying to help them navigate this difficult time. Then they left to go get ready for church. Christopher always looks so brave and hopeful. They are all very compassionate with there mother, but Christopher does not cry. Julie said to me, “Watch out for Christopher. He is so tender, and you won’t know it, because he won’t show when he is crying.” I thought, “somethings only a mother knows, what am I going to do without her.”
Sometime earlier this morning, around 4 or 5 AM, she was very anxious and concerned about dying. She asked me if after she died if she would still be asleep, or if she would be awake in the spirit world. We talked about the reasons we believed she would be awake, and happy. I was worried about what I might do next if she continued to get worse and no longer able to communicate her wishes. She does not want another hospital stay, and we have decided never to do anything “heroic” like CPR. She has given me authority to make decisions for her in that situation, still I ask occasionally what her desires are. Knowing that she suffers, and knowing that to alleviate suffering, more and more pain medication may be necessary, which will also hasten death, I asked her again, “What do you want me to do if you get worse?” With a knowing and sorrowful expression, she looked at me and cried, “I just wanted to live, so bad!”
For over 20 years, since Jordan started Kindergarten, or even before, Julie instituted the routine of having a morning devotional with the Children. It lasted about 10 minutes each day, and consisted of a short inspirational story for children, a few verses of scripture stories, a worshipful song, and a prayer. On days when there was only a minute to spare before the bus came, she would kneel in prayer with them by the front door as the bus pulled up.
Over the past two years, she has sometimes missed having these devotionals. This school year the two “little boys” have been coming into her room for devotional, when she can’t make it out to the living room. This morning again they sat by her, and she listened while they read, sang and prayed. Afterward, Christopher lingered by his moms side, staring at her, chin resting on his hands, with her hand upon his cheek. They were talking, I don’t know what about, but I ran to get my camera, and just missed the moment, as they finished and she withdrew her hand. But I did get this picture of the boys with her.
Although more stable the past 2 months, the past 2-3 weeks Julie has been gradually eating less, experiencing more pain, and becoming more weak. This was very noticeable on out trip to Houston. Aside from king crab legs, she didn’t eat much while we were there, and not much since.
She had her PRRT treatment last Thursday, tolerated it well, and slept for about 20 hours during and after the treatment. The doctors we met with said that based on the test, the tumors were well differentiated and had the right receptors for the treatment, and it was likely that the treatments would work. We returned home Saturday, and she has slept a lot, and eaten little. I have pressed her hard to eat, and she pleads with me not to make her eat. I assume the treatment is responsible for some of this, but I also fear that this was happening before the treatment.
Today I took her to have an infusion of IV fluids to help her feel better. It didn’t seem to make much of a difference. Tonight she told me that she feels like she might stop breathing. Her breathing looks normal. I just wonder if her body is now dying. We have talked about the need for her to eat if she is going to survive, she knows this well, but has no desire right now. I told her we could go to the hospital for admission and IV nutrition until this passed, and she refused this, and requested to stay home in her bed. I told her that eventually she would die and pass on if we didn’t do something. She said that it would be OK if she died tonight, and she was ready for that. I don’t think that will happen, but I am full of angst, and so I write.
After we talked, we each prayed together, her voice thin and weak. She looked up at me and whispered, “I am so sick.” She softly and with so much kindness in her voice, thanked me for taking care of her. She got up and brushed her teeth, and I gave her two pain pills, and she got back in bed and was comfortable. I anticipate many more days together, but I don’t know anything. There have been other nights like this, maybe not exactly, but similar. Still, I am anxious, tonight there may not be much sleep…
It was the End of July, three weeks after Julie came home from the hospital, we were on a drive to SLC Utah, Julie turned to me and asked, “What should we talk about?” It was a surprise because she had said little since coming home. We talked together much of the trip, which was a big turning point in a slow recovery after her hospital stay. Since then she has been more alert and moving more, able to walk much better than when she first came home. She still uses the wheel chair for longer outings, like the airport or mall, but she moves about the house without help. She is still very weak, and takes pain and nausea medication every day, and she has her intraspinal pain pump turned up much higher. Yet, we are enjoying simple and beautiful things, making efforts to get out, even if it for an evening sunset drive and a stop at Baskin Robins.
Every day there is so much to take in, so many of God’s creations and blessings all about us. Every day there are pains, tears and fears. We are both getting better at being happy. Here are the happy points:
Trips into nature, mountains, lakes, fresh air.
2. Being together with family, getting to be a mother.
3. Being Mother of The Groom. Kendall Hatch and Hannah Murray were married for eternity on 12 Aug 2017. This is something she was fighting for.
She is still fighting for so much. She wants so much to live. We have been having very frank discussions. I have promise her that when she dies, she will be happy, she will miss us and we will miss her and that will always make us very sad. But she will be happier in many ways. That is what we want to believe, that is what we choose to believe, that is what we have to believe. That is what our faith in Christ is for. Still she is not giving up, but we have been facing death with less despair.
In July, Julie had an octeotide scan which showed she has the octreotide receptors on her tumors. In the image below, the tumors that have the receptors show up in black. The bladder and kidneys also show up black. As you can see there is extensive disease in her liver and throughout much of her skeleton. You can also see the tumors in her chest, skull and pelvis.
We are now in Houston for the whole week, having several tests done, and tomorrow she will be infused with Lutathera, Lutetium-177-dotatate. This is the PRRT treatment that will take radio active Lutetium 177, bound to octreotide, and find the octeotide receptors on the cancer cells, bind to them, and emit beta radiation to destroy the tumors. Here is the link for more info: PRRT info
Julie is enjoying her time in Houston. The warm and humid air feels good to her, she loves the mossy, huge live oak trees hanging over the roads, she enjoyed the butterfly and natural science museum, and she liked the King Crab legs she had for two dinners (restaurant and leftover).
We are talking about the future and eternity. We are not going to plan on some hypothetical future. We are trying to look to the future as if nothing changes from this day, and plan as if every day is going to be as good or as bad as the present day. We want to work for and hope for good days, but live today and every day with optimism, and let the waves of emotion and sadness overwhelm us, and then recede, and make us feel grateful for every moment together. Does any of that make sense? Maybe just to me.
It has now been 9 days since Julie came home, and she is feeling better, some hard days, some good. Radiation finished. Waiting for octreotide scan next week. That is the update. Read on if you like…
Last Saturday, 8 July, at 6 PM, I stood in the bathroom with six pills in my hand, three white ones for pain, one yellow for nausea, and two pink for alertness. Julie had tried to get up several times that day, only to get right back in bed with a whimper, “I am so sick.” I knew she really wanted to get up and go to Olivia Elison’s wedding reception, and if possible, to her 30 year, Skyline High School reunion. So it was time to use all three types of medicine together. Even as a physician I wondered, “Am I giving her too much medication?” I want to be very prudent and generous in relieving her symptoms, walking the balance between good symptom relief and side effects. I put away one white pill and one pink, and gave her the remaining four.
Two hours later we sat in the car in Elison’s driveway at the reception. For about 20 minutes Julie breathed deep and sighed as she got up the courage to walk across the lawn to the back yard reception. Several friends stopped to offer love and concern. No one was in a hurry. As Julie took her very slow and focussed steps across the lawn with her walker, Dr. Bennett stopped and offered to go get a wheel chair from his office. I gave him the nod and he was on his way. Julie finished her trek and even though there was much strain on her face, she was happy to have made it to congratulate the bride and groom. She found a soft chair, and many kind friends hugged and talked with her. Dr. Bennett returned with a wheel chair for us to use.
We left the reception and she was very tired. She wanted to go to her reunion, but didn’t think she could. I really wanted her to make it because she loved her high school years, and loves her high school friends. She has always been a friend to people from all walks of life, even back in high school as a Grizzly cheerleader she was genuine and real. I knew she would have friends that would love so see her and offer their love back to her.
We drove for a while in quiet until she was rested, and eventually pulled into her reunion as the program was ending. There was a swarm of kindness and love that greeted Julie. Friends hugged and cried with her, old beaus knelt down and held her hand and looked kindly into her eyes. Strangers to me, thanked me for bringing her. I thank them for loving her and lifting her.
The next day she was still quite ill. Kendall, our second oldest, was there to visit long by his mothers bedside. Christopher, our second youngest, sat on her bedside and told her in detail of roller coasters and fun at Lagoon. We ate Sunday dinner together on the bedroom floor.
Monday I went back to work. I made arrangements for her brother Steve to take her to her radiation appointment, but when they arrived, Julie had anxiety and nausea, and couldn’t continue. I felt guilty for not being with her, and decided that I would make sure to be with her for the rest of her treatments. She finished her radiation treatments yesterday, Thursday.
Julie has felt a little better each day since Monday. She has had a flood of visitors, old and new friends and kind neighbors. She is eating much better, and speaking much more clearly. She is walking faster, and hasn’t used a wheel chair since Saturday (but I did buy one). Evening drives and Baskin Robins ice cream help. She has an octreotide scan next Tuesday through Thursday to determine if she is a candidate for the PRRT treatment. See Just Lie Down By Me, PRRT
Julie and I are very sad at times, yet I welcome the grief. I much prefer grief and heartache to numbness and lack of feeling. We are also very happy to be together. I miss my healthy Julie and feel much pity for her sickness, sadness, and fear, but I cherish having her still, and my time with her is the most precious time I will ever have. I am thankful for memories and photos. Sunday evening after looking at several photos of Julie over the years I was full of emotion and longing for her to be well again. I went to my room alone and the longing overwhelmed me, and I welcomed it…