I know that people are busy these days, so getting advance notice is always a good thing. The memorial information: August 22, 2026 Visitation: 12p – 2pm Service: 2pm Location: Springbrook Community Church – 10115 West Algonquin Rd, Huntley, IL 60142
The girls and I are going to go spend the day together today. We feel all of your love and prayers and we appreciate you all.
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How many times have you enjoyed so much the process of waiting in line, or waiting for the end of a work day, or maybe for waiting for vacation to start? Probably not very often, and I gotta say I’m not liking this waiting. It’s tough to sit here, and wait. I’m of two minds these days that are different but both true. I want her to let go and be free from this pain and uncomfortableness that she’s experiencing, she’s seen everyone and said all of her goodbyes, it’s time to go on and be free from this body. Parallel to this, I want more time with her still, even if it is just to hold her hand and just be around her a little longer, I’m just not ready. There is a hole inside of me that started small and unexpected with the word “terminal” and has been increasing slowly until this moment that I know is coming very soon that will cause it to be ripped wide. I want to avoid this moment (and that’s for me), but I welcome and invite it (and that’s for her).
and so I wait
Psalm 130:5-6 says: I wait for the LORD, my soul waits, and in his word I hope; my soul waits for the Lord more than watchmen for the morning, more than watchmen for the morning. (ESV)
The watchman knows the morning is coming, but he cannot make it come any faster. He does not control it, his task is simply to remain at his post and watch for it.
In the same way, sometimes faithfulness means continuing to wait, staying at your post (or where God has you), and trusting that God will act in his time. The waiting may feel long, but we have hope in the certainty of God’s word, just as the watchman waits with confidence that morning will come.
Updates on her in general – she is pretty unresponsive, with some baby glimpses of clarity. She’ll suddenly open her eyes and it’s like the fog is gone and I’ll say “I love you” and she’ll say it back, and then as quickly as I glimpsed a rebecca of the past it’s gone again and she’s back asleep. I’m administering morphine every 2-4 hours as she experiences pain, so she’s keeping comfortable. She still is able to motion to me occasionally that she needs water and I’ll wet a small swab and smush it into her mouth to give her some water, and repeat a few times until she’s not asking for more or is back asleep. Nurses keep saying “very soon” but what was “probably tonight” on Sunday gave way to “somewhere between 3 hours and 3 days, but closer to 3 hours” yesterday, to “sometime in the next 72 hours” today. So literally only God knows. In one of her moments of clarity I was able to ask her if she was scared and she said she was not, so that’s a blessing. Another plus is I’ve gotten really good at typing and mousing and using my phone with only my right hand as she’s taken over my left hand (picture) and I love it.
Prayers for peace and release for Rebecca, for her to feel no unresolved business and closure with everyone. For the girls to allow themselves to feel what is going on and not be scared to lean into that and allow the emotion to happen. And for me to see through my watch well until God brings this girl home.
Another week, and lots of changes. In the last couple days Rebecca has become almost in a constant state of sleep. She’s able to say things occasionally, but it’s only a few times a day now. I started her on oxygen yesterday, and her heart rate is increasing and blood pressure falling. She’s too weak to stand anymore. Yesterday she did have the equivalent of about 2 spoons of noodles, but refused food the rest of the day and all day today as well. She’s starting to have issues with being able to swallow water now, so I’ve changed to giving her wet swabs to suck on.
Unfortunately it has become apparent that we are getting close to the end here. We are probably a week to 2 before Rebecca can be done with her broken body and be in her heavenly perfect body.
Please pray for her to remain comfortable and to not feel alone and for me to be able to serve her and support the girls well through this.
Abigail (our daughter) was away for about 2 weeks and it was pretty interesting to talk with her last night about what differences she’s seen with Rebecca. I know she’s changed in the last couple weeks, but being too close to it day after day you don’t see it as well.
Rebecca has undergone a lot of changes lately. Her speech is having some issues and she sometimes is not totally making sense in what she says as her words get a little confused. She is sleeping a lot more and it’s difficult to hold a conversation with her sometimes because she just can’t keep her eyes open. She’s also seeing and hearing things occasionally, and mostly not in a scary way, but more in a funny way (the other day there was (apprantly) a “hariy man in a flower dress” standing next to me, and hello kitty was sitting on a chair in the living room the other day.) Also she has developed some involuntary muscle spasms on top of all of this. I think most of this is from the pain medicine, but we had been at a level that she was still in pain, so we went up to the next higher level and now this. It’s possible that the disease is causing some of these things too, but it’s hard to know what is doing what.
Texting has been a problem for her as she is having issues writing things out, and also keeps falling asleep while trying to respond, so I’ve started reading her text messages and then writing what she says back (so don’t say anything bad about me, I’ll see it)
We are also having blood pressure issues and her blood pressure continues to be low (systolic in the 70s-90 range). We are now taking midodrine to try to get it up, but it seems to have zero affect. It’s not helping that she’s not drinking a lot either.
I’m sharing this to just manage expectations for you all… – be aware if you text her, she may text gobledy-gook, or it may take a long time to get a response – if you call her she may fall asleep while on the phone, coming in and out of consciousness – if you visit she’s getting to the point where she can’t really hold much of a conversation and will nod off several times, although there are occasional moments of clarity and good conversation.
We are now at the point that she will probably never leave the house again, walking to the bathroom is more than she can handle right now, and having her legs not elevated is just not working anymore, it’s just too painful.
That’s a lot of negatives. The positives are that she’s fairly comfortable, and she really enjoys being in the living room right in the middle of me and our daughters watching tv and laughing and joking about things and watching outside our front window. We continue to get good time together and she is able to crack jokes and smile and give me smooches. Over the years we never really prayed together, but lately we’ve been praying together every night and it’s special. I’m a big “it is what it is” guy, and so I don’t really dwell too much on the negatives that I have no control over, so in light of the positives I’m enjoying where we are right now, and I’m thankful for it over where we could be.
Rebecca has a great love and heart for birds. She can’t really stand seeing an injured bird, or a bird that has met it’s match by slamming into a window. I’ve never really paid much attention to birds before knowing her. She knows an amazing amount of bird names. She told me that it probably came from her father who also really likes birds and taught her about different birds when she was younger.
We have a feeder in our backyard that has a camera (where the video above is from). I can fill this thing, and come back an hour or two later and it is just completely empty. Sometimes I look out there and I’m like “I just filled that thing, stop throwing it all out”. It seems like such a waste as you’ll sometimes see that seeds are just flying out of the feeder left and right as a bird or multiple birds are up on it. It’s funny to watch the birds throwing seeds out of the feeder as they search for that one particular seed. From the outside it looks so chaotic and wasteful. This disease has felt that way – scattering future plans, ordinary routines, certainty, comfort, control. But it really gets to the heart of things, gets to the thing that’s of greatest value: love. Rebecca and I have been together now for about 23 years, and in that time we have had many a time where we’ve gotten distracted by the seeds that had no value, selfishness, pride, jealously, bitterness, being right, expectations, etc. This disease has boiled away impurities, the seeds that used to seem important are tossed to the floor. It feels like figuring out the secret to a tough game, but only at the end. I feel like we’ve reached a new level of love, the way that we see, talk, treat each other – so different. I imagine that it’s an glimpse or semi-understanding into what the absolute love that God has for us.
Maybe we are the odd ones, and maybe everyone else has already achieved this level in their relationships, but if you haven’t I urge you to strive for it, throw those pointless, poisoned, time-wasting seeds out of your relationships and enjoy real time with those you love, striving for spending energy on things that matter and are positive, and quickly dismissing and chopping out those that are not. (there are 8 commas in that thing that I just passed off as a sentence. Sorry to you grammar people, that must have been painful). You probably think your spouse, or kids, or parents are good/great/amazing/excellent. When’s the last time your actually told them that? Do more of that while you can because those are some awful tasty seeds, and they won’t be there forever.
Reading back though I feel like this turned into more of a soap-box thing than an update. But I do mean it, and anyway it’s my website, so I get to do what I want. 😊
In the last week we got Rebecca’s hospital bed and set it up in the living room (what I would call the “frontroom”, but I keep being told that it’s the living room.). This allows her to look out the front window in the front of the house in the room that is in the front, so that’s cool too. Rebecca is more comfortable, but getting up and down is much more difficult since her legs are so very heavy. We’ve had many visitors from friends and family come by, and she has enjoyed all the people and conversations.
Silly cancer continues to fill her body with fluid and her mid section has now started to get larger. Also one of her arms has started to look like it’s filling with fluid. This fluid thing is quite a spirit damper, it feels annoying that there’s nothing to be done to stop her from having her body fill with fluid and stretch all of her skin out so uncomfortably. We are going to try doing some Lasix again, but that hasn’t seemed to help in the past so we’ll see.
I’m pretty much working from home these days, so I get to see her a lot and be near her. She’s much more at peace now that the decision to stop treatment was made.
The not knowing the timeline on things, or what’s going on inside her body is hard – for both of us. It’s also difficult not to know how this will go (rapid, slow, noticeable, sudden) Her walking is increasingly hard with legs being weak and her feet so swollen it makes walking painful and uneven. Going up the stairs after having to go somewhere is getting close to not being able to be done anymore as it’s a very hard feat. I don’t quite know what caring for her once she can’t walk anymore will look like, but that’s a bridge to cross when we get there.
Good things are that her pain is under control, that we don’t have 7 or 8 appointments every week, the stress of treatments and the days of pain that followed is no longer, no more hospital visits, her not being able to stand up means that I get lots of opportunities for hugs and kisses throughout the day, she’s out in the room that we are all in most of the day, her mind is still pretty sharp and we are able to talk and laugh together about things, my job allows me to be flexible in being here to care for her, her appetite has been better lately which makes me happy that she’s getting more calories now, there are lots of friends and family that want to see her and spend time visiting with her, etc, etc. Rebecca and I don’t take these things for granted and we are very thankful for them.
Rebecca has continued to retain fluid and has been experiencing more and more pain. We had decided to check into the hospital on Tuesday after seeing the palliative care doctor. On Tuesday we went in to the palliative doctor appointment and things ended up different than expected. We changed all of the medicine around and the last few days have now been pretty much pain free. Also she (palliative care doctor) was able to sit and talk with us some more about things that were going on and suggested that going to the hospital may not yield much results with the fluid issues, and would keep rebecca from doing what she wants which is to be at home. She suggested that we see how the new meds worked and how Rebecca felt after that.
Rebecca and I have talked about what she wants to do with treatments and pluses and minuses of things. She decided on Tuesday to stop treatments. There are several good reasons for this decision, but none of them matter more then the simple fact that it’s what she wants.
Because of this we have now changed over to hospice care. We talked with a hospice company Wednesday and started things. Hospice is a bit different than what I remember/thought it was. My limited understanding looked like moving someone into something like an old person’s home and waiting for them to die. It has either evolved from that, or I just never had a good understanding of it. The company has a team of people that will be serving rebecca to make life easier and to make her comfortable. We’ll be doing everything from the house, as she wants to be here (and we want her to be here) with us. So we are getting a bed delivered next week, and the hospice company will be taking care of all of our needs from here out. We’ve already been visited by a nurse that will be coming a couple times a week, a social worker that will be visiting regularly, there’s a doctor I talked with yesterday that will be coming out tomorrow to do a thoracentesis on her left side. They are taking care of all meds and got us things that we had been waiting for already.
Starting hospice does mean that we had to say good bye to the oncology team as we won’t be working with them anymore. It was emotional as they asked us to wait around a bunch of them came in and gave us both hugs and words of encouragement.
There’s a lot of mixed emotions going on. There’s no way to ignore that this is one of the last signs on this road, it says the exit is coming up, and try as I may the brake petal is busted. This is scary and sad and hard. On the flip side this stinky thing has been calling the shots since we found out, and with these decisions rebecca is taking back control over some things that she can. That’s empowering for her and has given her peace that a decision has been made.
Be praying for rebecca. It’s one thing to have faith, and to know what’s coming at some point in the future, it’s another to be walking up the steps to the door. She’s sad, scared, and worried. But at the same time happy to be done with appointments and hospital visits and with us at home. Pray for her to feel God’s presence, to have assurance in what she believes, and to to have peace with what is to come.
Happy observed 4th of July day. It feels strange that it’s Friday today as it feels like Saturday to me. All I know is I have the day off today and that sounds fine.
We had a great time last week up in Wisconsin Dells for a couple nights and then in Lake Geneva for a night. I forgot to take more pictures, so the above will have to suffice. We really got to give Rebecca’s wheelchair an exercise running all over the place and I was pleasantly surprised that it held up just fine with no issues, and was fairly comfortable for her to sit in whether traveling between places, going in and out of shops, and sitting in at restaurants as well.
This week we were scheduled to have chemo on Wednesday, but at the appointment before the treatment Rebecca decided that she didn’t want to do it. They’ve pushed it 2 weeks forward, but she/we have some decisions to make on whether to continue with future treatments or not. The progression of things and the intensity of the side effects make weighing benefits vs quality of life a hard decision. Ultimately it’s her decision of course as I support whatever she decides, but she could use some prayer on what to do and to have peace with whatever that decision is. When an answer for something like this is not clearcut it leaves a lot of room for doubt and second-guessing and a lot of pressure to not make the wrong decision or a selfish decision. Do I prolong things to stay with my family as long as possible despite the physical pain I’ll need to endure, or do I avoid physical pain by making things quicker, or is that selfish and wimpy, or is that actually better because I don’t have to put them through this as long, what does God want me to do and what’s a good way to honor him through this? Etc, etc (things like that I’d imagine). It’s certainly the hardest decision, and the answer varies per situation/person.
Appetite for Rebecca continues to be an issue. Between a dry mouth that doesn’t want any dry foods, not getting hungry, a bloated and distended stomach, and nausea… she isn’t getting more than 500 calories most days. So weakness and muscle loss is a thing and it makes standing more difficult.
This coming week we have radiation on Wednesday, and then I think 4 more sessions of radiation after that. The purpose is to lessen the back pain that has increased intensity over the last few weeks to be worse and worse.
Medications have changed as current pain meds were not sufficient. We do see a palliative care person this week on Tuesday as well. The goal of that is to find the right meds to deal with some of the pains better and keep some of the breakthrough pain at bay. We haven’t found a sweet spot as either there’s no pain but she can barely stay awake or walk, or there is pain but she can function and think better and the pain makes it hard to sit/walk. Since we can’t find the best option it’s kinda been a ping-ponging between those 2 throughout the days/nights.
Sorry that feels like a lot of possibly negative things, but that’s the update, and that’s where we are right now.
250 years is a pretty cool thing, but makes you realize that we are just a baby compared to some other countries. Wishing everyone a happy 4th of July, and I hope you all get some good time with your families in.
Welcome back to your irregularly scheduled program. We were able to get through a chemo treatment (yay!) so now there is 2 under her belt with this new regimen. Also they were able to do immunotherapy treatment.
After chemo there was quite a lot of pain for many days (almost a full week), but it finally seems to be subsiding now.
We met with a radiation oncologist a week ago, and they want to start radiation on her back right away. It’s one of her largest pain points, although her stomach and legs have been quite painful lately too. We are meeting with them next week to get setup for a week of radiation very soon (they will do a treatment every day for 5 days straight ant then that is it). I’m sure we will find out more information about that come this wednesday when we meet with them.
We saw her cardiologist this week, and it was a little sad as it’s probably the last time we’ll meet with him. He said that everything looks good and to just reach out if we need anything.
She got her left side fluid drained at the hospital this week and we continue to drain the right side at home every few days.
Today we start our week of vacation, so we are looking forward to doing a quick trip to Wisconsin Dells and to Lake Geneva. With Rebecca not being able to walk very much we’ll be trying out using a wheelchair at most places so that should be interesting. We took it for a spin yesterday at Three Oaks and it went well (picture)
Quality of life seems to have changed quite a bit in the last month. Rebecca spends the whole day and night on a chair. I sleep on the couch next to her at night. She’s on pain pills pretty much all day. Walking continues to be harder and more painful as she gets weaker and the disease progresses. Pain and pain management mean it’s hard to concentrate and that also means lots of naps throughout the day. We are hopeful now that we are in this chemo regiment and with the upcoming radiation planned that we may be in for some more days where she can say “this has been a good day”. But the trajectory is hard to ignore and it weighs heavy even on the most positive and hopeful thoughts.
I’m thankful that it is summer, that the girls are home with us, and that we get this next week to hang even more than usual. Prayers for things to go ok with our short travels, for rebecca sleeping in a bed (at the hotels) to be able to be made comfortable, for wheelchairing to work with what we’d like to do on vacation, for us to be able to be flexible if things don’t go as planned, for us to have some more good memories cemented, and for rebecca to have as many more times as possible where she can lift out of her ailments and pain and have some joyful moments.
Updates sometime later this week, probably with some fabulous photos of the vacationing Suarezes.
