I had been through some difficult days. I knew the end would be difficult. But the time to make a painful decision had come, and it hurt. It really hurt. It was a decision that I expected to make one day. But not now. With all of the knowledge I had gained about glioblastoma, this day was inevitable. But it came so suddenly and I didn’t feel prepared.
The time I dreaded had come…
As I typed in my journal the morning of November 8th, Roger slept peacefully next to me. I was already beginning to have a feeling of panic, the feeling I always got when a family member left. Roger’s brother Bruce and his wife Jody were coming for a visit later that afternoon, and that was something to look forward to. But then Lisa would leave the next day. I anticipated good Alabama friend Lisa Martin Shaffer and her husband arriving on Monday.
I had reached a point where I was afraid that I wouldn’t be able to redirect Roger or get him up. A pillow on the chair helped to get him up from a seated position. I looked at him and thought, “He probably wouldn’t want me to take him out and have people see him the way he looks and acts. They would love him, but he wouldn’t like being on public display.” From this point on he was pretty much housebound.
Treatment? Ever present in the back of my mind was, “Now what? Should we proceed with the monthly chemo?” I was inclined to stopping the chemo. I prayed that God would make that decision for us. “Please, God. Help us and show us mercy.”
Bruce and Jody arrived, and the visit was great. I think that Roger knew who they were, but he just sat and fiddled with paper. They brought Chinese lunch for us, and our time spent together was sweet.
That evening I got a huge surprise. A former student from Alabama, Leslie, came to a State of Grace’s concert. We spent precious time talking, and I, the teacher, got “schooled” by the student, but not in a negative way. She brought a first-hand perspective of life, cancer and death because her father had recently died from that beast.
Some of what I learned:
- Sometimes if you do nothing or keep trying treatment, it becomes cruel.
- Hospice is wonderful. (In my mind I wondered how Roger would receive them coming into our house and taking control. “Is this a death sentence? Have they all given up on me?) Leslie said that hospice helps the patient LIVE until they die.
She gave me lots to think about, and we shared tons of laughter as we talked about our days at Grace Baptist in Alabama, giggling while we looked at yearbooks. It was a wonderful visit that had a huge backstory of God’s direction in our lives.
(I’m including more dates now. The timeline is important to me, and may make more sense to you, the reader.)
On Sunday morning November 9th I woke up in a better humor. Sundays had always been busy days for us, but this one was more relaxed. That morning I had to be at church to sing, but my main purpose was to be fed.
Lisa stayed with Roger, and after the service I chatted with two widows, asking them about their experiences. I yearned to sit down with a group of them and listen and learn. I said, “If nothing miraculous happens, I’m going to be in your club. I will be a widow; there is so much I need to know.”
You’ll recall that if the steroid was working, and if there was just inflammation in Roger’s brain, we would see a remarkable change for the better after five days on the steroid. I had seen no change in him since Thursday.
Scott called to say he had been thinking that I should check on hospice sooner than later. In two and a half weeks, dad had really changed—for the worse. What would happen in the next two weeks while waited for an appointment on the 20th? Even if there was a small improvement with the steroids, what was that in the big picture? “Yes,” I thought. “He and the rest of the kids might be right.”
November 10, 2015–email sent to the kids
Well, I have prayed and mulled over his situation. Scott called last night and made some thought provoking points. He said that if daddy has gone down so far in the past few weeks, he could even go down more in the next few weeks. If I have to wait for the appointment on the 20th, it just will delay help I need at home. And even though he may have shown a little improvement, (which the more I ponder is pretty non-existent), is it enough for me to have him where he was a month or two ago? Finally he said, (like you all have been trying to tell me), I need help now while I am still not totally spent. There were others who voiced the same thing in different ways and words, so I have pretty much decided to call on Tuesday and say that there was little or no change with the steroid and that our family has decided to stop any further treatment. Just to see these words in print is absolutely horrible. Can we talk tonight and confirm this as a family? Maybe 9:00 central time if I can stay awake? Scott….I’ll let you start the call since you did a pretty good job on the last conference call. Love you. Mama
Our dear friend, Lisa and her husband Bob arrived later that day. Their hearts are huge—what an encouragement. Penny from church came over to chat. Amazingly, Roger remembered her name.
That evening I had our conference call with the kids. I wish I had recorded it, because I was able to candidly express my heart and concerns. Following are some snippets from the conversation.
- We rehearsed the past events and what would come next, guessing the doctor’s response if I said there was no improvement with the steroids.
- We pretty much all agreed that there was not much improvement.
- We wondered if they would take our word on that.
- I feel like I am giving up.
- I feel like I am euthanizing him.
- I feel like I’m am sentencing him to die.
- This is such a hard decision.
- The kids mentioned that maybe a little of my avoidance is due to what I will have to face after he is gone.
- They want me to get help.
- They asked if I could find out how much longer he would have.
- They will support whatever I decide.
- They said that he is going to die from this. We are putting it in God’s hands and letting God decide when.
- They said keep asking myself: Would daddy want to have me caring for all of his personal needs and feeding him, etc. and him continue to sit around and write on post it notes all day without being aware of everything?
November 11, 2015
I called Dr. Campian’s office and left the message I had been dreading. It was so hard. This is the text I sent to the kids.
“It’s done. I called and left this message with the nurse: ‘There has been no improvement with the steroid; we’ve decided to stop treatment.’ The nurse said the doctor is prompt. She usually calls back the same day.”
It was done.
While we were getting more prescribed fluids at St. Mary’s, I got the call from the nurse. I can still see where I stood. I heard in my ear that the neurology oncologist understood what we wanted. It was confirmed that we would stop treatment. No more trips back to St. Louis. No more chemo. No more infusions. Palliative care was what we asked for, though I had no real knowledge of what that word meant.
As I look back, I am so glad that Chad and I made that first contact with hospice two months prior. I had their information written down, and the neurology oncologist’s office would contact hospice and share what they needed to know about Roger’s condition. Hospice would then call me, so all I had to do was wait. I teared up. It was good to have my friend Lisa there with me.
Friends provide not only the shelter during the storm, but also the emotional support after the storm when there is clean up, putting things back in order, and building anew. I had not yet passed through the darkest part of the storm; it was hard to comprehend that after it was over, I would need my friends even more.
But that day I had a feeling of peace and relief.
2 Corinthians 1:3-4
Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.