In the past few days, people have been asking questions that for various reasons have been difficult to answer.
Question 1: How are things going?
The main difficulty with this question is that things change so frequently. If someone asks me while I'm at Calvin, my answer usually begins, "Well, when I left home..." since I know that things have likely changed since then. Here's a brief summary of the last few days, as an example.
Friday morning our son Jason took Penny for hydration and a magnesium infusion. She was tired and basically slept through the entire 4-hour infusion. But that afternoon and evening Penny was feeling as well as she had felt in a week or two. She even did some knitting (for the first time in a week). As is often the case, she felt worse later in the evening, but not terrible.
Saturday morning she enjoyed tea time with some friends and then relaxed/slept most of the rest of the day while the kids played games and I prepared pizza night. She slept soundly enough during the Packers game that she had to ask how the game went and who won. After that, she was feeling much more uncomfortable and painful and couldn't sleep until sometime after 3:30 am, so we spent the wee hours trying to find distractions (some Netflix and some time just chatting) and the right combination of medications to help.
Today has been a very low energy day, and eating has been challenging. Walking from room to room leaves Penny out of breath. There has been some "queasiness" (Penny's term for something a level below what she calls nausea), but no pain. We'll see how things go tonight. She's sleeping now, but soon I'll see if I can interest her in the protein shake/smoothy she was talking about when she drifted off.
Question 2: How are you doing?
This questions reminds of a conversation I had years and years ago with my daughter. We had recently moved into a new house and I was painting the walls in the basement, which was to become one of the play areas for the kids, who were in pre-school and grade school at the time. The conversation went something like this:
"How's it going, Dad?"
"I think the wall is looking pretty good. What do you think?"
"No, I mean how are you feeling about painting it?"
I tend not to dwell on this question too much, and the types of things I've posted here reflect that. My usual answer to this question now (including when Penny asks -- which she does nearly every day) is that I don't know. We have seen Penny's decline since August, so we were not surprised to learn that she is not currently a candidate for another clinical trial. But actively talking about hospice and talking with potential hospice services is different from knowing that someday this might happen.
We still tend to focus on the "next thing to do" and to take advantage of the best moments as best we can. At the same time, there is a kind of sadness that has moved from the depths to the shallows, and it surfaces from time to time.
Balancing hope and realism is also trickier now. We tend to be optimistic realists. We gather enough information to make reasonable decisions, we hope for good outcomes, then we deal with the actual outcomes as they happen. But we also know that the likelihood of truly good outcomes has gotten much lower of late.
Question 3: How can we help?
The good news is that we have received more offers to help than we know what to do with. Truth be told, we don't feel like we need much, I guess. But it is good to know that we have people to turn to if and when we need something.
Fortunately, my teaching schedule at the moment provides a great deal of flexibility, and there are many things I can work on from home. Both of our adult sons are between jobs at the moment, and one of them lives in our basement apartment, so they are able to help out when I need to be elsewhere, as are a couple friends who live nearby. Colleagues at work have volunteered to help out as needed, and one of them is prepared to cover my class on Wednesday, since I'll likely be in the hospital, or to fill in at some other time that might make more sense later in the term.
We tend to make food decisions as we go along, taking into account anything that Penny thinks might sound good to her, eating whatever and whenever it works. So far preparing food has not been a big stress point.
We are not yet to the point where Penny can't be "alone" (recall that our son Jason lives one floor down, so she isn't completely alone) for short periods of time (like while I'm running in the morning). And Jason will often hang out upstairs if I'm away later in the day. We have several other people who are available for this as needed in the future. And we have a handful of friends who have been able to run some errands for us now and again.
The prospect of spending even more time together than we usually do is not daunting. We've been doing that since the 1980's, so we're pretty good at it by now (and still enjoy it).
---
Tomorrow we'll go to the START clinic for hydration one last time before surgery on Tuesday morning and likely hospice care after that. Our emergency hospital bag has been packed (but not needed) for several weeks, so we are pretty close to ready on that front. Then Tuesday we'll find out how the surgery goes and take things from there.
Comments
Bonnie Mulder: I so appreciate the honesty and detail in your updates, Randy. Love to Penny and the rest of you as you take on each day together.
Chriss Pruim: you write so well Randy. we continue to pray for you all step by step. we love you.
Kimberley Carlos Belez: Praying for you both, and the kids, too, dear friends. In the questions and waiting, we pray you experience the presence of God with you. Praying for God's peace as you prepare for tomorrow's surgery. And, for a smooth procedure and good result. We love you!
Marie VanderLinde : Thinking of Penny and you, and your kids, grateful for time together. Praying the surgery will go well and be helpful.
Alisa Tigchelaar: Thank you for sharing so openly, Randy; what a gift to us as we continue to keep all of you, and especially dearest Penny 💗, in our conversations with God. Praying now for the preparatory hydration and surgery.
Karen Ludema: Thank you for the detailed and honest updates. You all are in my prayers and on mind all day long. 🙏🏻❤️
Jim Ludema: Thanks for another thorough and thoughtful update, Randy. We will pray that the surgery goes well tomorrow with a good result. Much love to you, Penny, and the kiddos.
Talon Rindels : Thank you for sharing so openly, Uncle Randy. Praying for a successful surgery tomorrow… and lots of knitting thereafter!
Terri A Boer: Praying for Penny as she goes through another surgery. May God give her strength and may he guide the surgeon. Praying for peace and wisdom for you all.
Patricia Boer Fischer : Randy, Thank-U So Much 4-all the Updates on Penny & U also!! Just know Ur n both Mike & My Prayers Daily 🙏!! If, We can do Anythin @ all PLEASE PLEASE Let Us know,, Thank-U, God Bless Ya's 😘 SENDIN HUGG'S 2YA'S FROM TENNESSEE 🧡 Love ❤️ Patricia Boer Fischer
John Ferdinands: Praying for strength for both of you. May you feel God holding you in all you go through. May God bless you and keep you. May He shine His face upon you and give you His peace. You are loved. Esther and John Ferdinands
Mike Borst: Praying for successful surgery today! Thank you for allowing us to walk with you on this journey. I love the story about painting the basement!
Susan Langeland: Thank you, Randy, for communicating. It requires something of you that we don't want to ask, but appreciate so much. Praying for all of you.
Scott Vander Linde: Randy--I so appreciate your honest and frank communications. Know that if it ever becomes too much to do, I will certainly understand. As you deal with your realities, also know that I lift both of you up in prayer several times daily. I am so thankful that you love each other so much and your time together. You both are such gifts. Praying that the surgery happens and is successful tomorrow.