The end of everything I knew

My husband passed away 1/1/2022. It’s amazing how fast everything went in the final 24 hours.

I wrote about helping him transition to the other side here, just so I don’t have to repeat everything.

It was an absolute honor and privilege to help him make that final transition. It was also by far the hardest thing I’ve ever had to do, bar none (worlds harder than giving birth to a 10-pound baby without an epidural.) That’s such an extreme understatement but I can’t even find words to describe it.

It’s the kind of shit that changes your life forever.

I had stayed up for most of the past five days and finally last night, I just crashed hard. I slept so deeply and soundly that I don’t think anything could have awakened me.

I had to fill out the death certificate yesterday, which was so unbelievably heartbreaking and grueling. He’s really, really gone and I will never be the same again.

My kids are stepping up beautifully. Chloe has possibly been my greatest source of support, though all of the kids (plus Amy’s boyfriend) have just been amazing.

J’s sister is here too and she has also been a literal angel. Her husband is also here. While we’ve had some very awkward conversations, his past career as a minister came in very handy in dealing with some of the unpleasant stuff (like taking off J’s wedding ring after he passed and making sure that I got back the favorite Clash t-shirt he was wearing at the time of his death.)

My MIL and stepFIL are a whole different story that I’ll save for another post. But I’ll just say that yesterday, I walked out of the room when she was talking to me and hid in my bathroom for several hours until she left. Chloe did the same thing.

After the funeral (assuming that they come again), I may not ever speak to her again after that, but not without giving her a piece of my mind and saying the words I’ve been holding back for 28 years. But more on that later.

I was so glad that I had the money for J’s cremation and didn’t have to borrow it from anyone. Gifts from J’s family always come with lots of strings attached and I just don’t want anything to do with that.

That said, I’m still more than okay with J’s sister; she’s Good People. I love that she was here and I think her presence made J feel ready to transition to the other side (whatever that may be.)

Similarly, I can’t help but think that on some subconscious level, he wanted to die before his mom got here. I know from past experiences—like when her father died—that she freaks out and says all kinds of extremely inappropriate things.

It was just me and him in the final hours and I think that’s how he wanted it to be. OMG, it was SO hard for so many reasons. I even texted my friend Annette (a fellow night owl who has unfortunately experienced a lot of losses) at one point during the night and told her I didn’t know if I was strong enough emotionally to get through it.

I felt like the last hours of his journey were midwifing him through death. But midwifing someone through the dying process is so much harder than through the birth process.

I just felt strongly like this is what I signed up for when I took those wedding vows. I couldn’t run away, no matter how much I wanted to.

I am so relieved that he doesn’t have to suffer anymore. I don’t know what waits on the other side but if there is a heaven, he’s in it. Nobody I’ve ever met deserves it more than he does.

I want to try to communicate with him beyond the grave but I haven’t had any of those experiences yet. I really hope that I will.

I think it’s also very clear that the kids are going to have my back. We have coalesced even more strongly as a family unit. And I think that this experience is especially transformative for Chloe, who is just really coming into her own. She’s lovely and emotionally powerful and she has already proven her loyalty to me in particular.

None of us wanted this to ever happen. But it has and I see now that the way we raised them with a “family first” ideology paid off many times over.

We’re likely going to postpone the memorial service until March, I think. We just have so much to do between now and then (especially taking advantage of J’s final gift to us of one last month of insurance) and we decided that would work out better for everyone.

I am beyond sad and heartbroken. There are just no words for it. But somewhere, on some level, I think I’m going to be okay in the end.

Watching my greatest love

I’m sitting vigil all night with J. Amy and J’s sister Kris will be coming back to relieve me at around 9-10 am.

I have to say that this is by far the most difficult and gut-wrenching thing I’ve ever done in my whole life: watching J prepare to leave this world.

Things have progressed so much faster in less than 24 hours.

Yesterday, I felt sure that he’d need hospice to bring out a shower chair. He told hospice that he didn’t need a bedside commode.

Today, he is using a urinal bottle because he’s too weak to stand up at all. And I’m pretty sure he’s wearing the shirt he’ll die in (fittingly, a Clash t-shirt.) I can’t see him ever taking a shower again.

He hasn’t eaten anything today at all and barely takes sips of water.

He’s fading in and out of consciousness and he can’t seem to get comfortable. I have liquid morphine and liquid Ativan to give him, and nebulizer treatments to give him every 6 hours to help him breathe better.

He always looks forward to those nebulizer treatments but then always apologizes for having such a weak cough. I always tell him that he has nothing to apologize for and that he’s doing great.

The hospice nurse said the nebulizer treatments should help him cough up more of the fluid in his lungs but I think that was extremely optimistic and naive.

The hospice nurse also said he would have a nurse aide come out on Monday but I am pretty sure that he won’t make it that long.

He’s constantly telling me “I love you, beautiful bird” and telling each of the kids when they come in the room that he loves them, too.

A lot of what he says is garbled or sentence fragments but the “I love yous” are always clear as can be.

Sometimes when I lean over to check on him or give him medicine, he kisses me (and once pulled me in for a hug.) He is showing his love for us until the very end.

It’s extremely cold in the house; the temperature is set at 65 F because the pneumonia makes him feel hot. But his skin and his lips are extremely cold (as is every part of me.)

I am honestly just in shock about how quickly everything has unraveled since his hospitalization. Every day, there has been a considerable decline.

I am the only one on duty tonight and I don’t know how I’m going to get through it. It’s terrifying and I can’t help him, other than by administering drugs. I probably could be giving them more often but he doesn’t often say he wants them (or I can’t understand him.)

I am just watching him writhe in pain or trying unsuccessfully to find a comfortable position. I feel so helpless.

I don’t feel like I have the courage to do this but he keeps telling me that he loves me. So how could I not?

I fear it coming

I am trying not to freak out but am not succeeding.

J went on hospice at home yesterday. They can’t bring out a bed until the morning. I am increasingly afraid to go to sleep out of fear that he won’t still be alive when I wake up.

His oxygen is turned up to 5 and he’s still having pulse oximeter readings around 85. His breathing is shallow and I can’t tell for sure but I think he has the “death rattle” which would mean death is very imminent. His lips are cold when I kiss him.

Chloe has a damn ear infection and needs to go to urgent care tomorrow, and there truly couldn’t be worse timing. J’s sister will be here tomorrow and I might ask her to take Chloe, just because the end feels so near. I really don’t want to leave him.

I need to try to get some sleep, especially because I got up early yesterday too. I got some melatonin in the appropriate dosage for moving your sleep schedule but it won’t be delivered until tomorrow.

But I’m so worried about J. It can’t be ending this way—not as fast as it seems to be. But I guess I don’t really have a choice, do I?

I just seriously can’t believe how everything has happened so fast in the past 10 days since his hospitalization.

On the one hand, I don’t want to prolong his suffering any longer. But on the other hand, please just give me a little more time with him. Please? I’m making bargains and pleas to a God I’m not even sure I believe in.

Please stay just a bit longer. Let the hospital bed brought by hospice revive him a bit.

I know that I have to let him go but how?

This disease is the cruelest thing I’ve ever been through by far.

Days tick by

How I wish that J and I could take one last vacation to anywhere but he’s clearly not in the shape to do it. (In fact, he’s worried about a doctor’s appointment tomorrow, where they don’t have valets and may not even have wheelchairs.)

Hindsight tells me that the best time to have taken a vacation was around a year ago but we didn’t really feel like we could afford it then, plus the whole world was locked down due to Covid, anyway. In fact, the one place I really wanted to take him—Japan—is still locked for travel.

We had some good times last year and even this summer. We truly enjoyed being in each other’s company, even if we were just in Dallas. Any place we went together was great, even the grocery store.

But I had no way of knowing what was around the corner. Of course, you never really do.

I am so glad that we decided to splurge on bigger gifts than usual for our last anniversary. As it looks unlikely that he’ll make it to this anniversary, last anniversary really was our last anniversary.

We both mentioned earlier that we now realize when was the last time we had sex. Fortunately, it was only a few weeks ago. But sometimes you just don’t know when the last time is truly the last time, period.

I think that if I’ve learned anything from this experience so far, it’s that you should always treat your loved ones like it might be the last time you ever see them.

Maybe other people won’t experience it as a slow, torturous fading like I will. In fact. I think it’s probably, thankfully, not likely to be slow and prolonged at all.

It might be more like suddenly your world is right and then it changes in a split second. You never really know.

I’m definitely not ready

I know: similar title to the last post. But sitting with this isn’t making it any easier. If anything, it’s making it harder.

I see J struggling to breathe and not able to get any sleep and it just keeps me in a constant state of worry about him. It makes it extremely hard to sleep. Last night, I crashed so hard that I didn’t wake up until 4 pm. Chloe had to knock on my door to rouse me. And my immediate thought was of J and wondering if he was okay.

I feel SO fucking guilty that I need so much sleep. I wish I could put that need on pause for a few months, when (sadly) I will be able to get as much sleep as I want forever.

I want to be able to power through and not need the extra rest. I want to spend every moment with J, especially because I know how soon I won’t ever get those opportunities again and I will kick myself for every moment I wasted.

I always used to say that I could get through anything in life except losing J. And now I have to do just that and I have no idea how.

His hospice bed is going to be delivered next week and it will be in the living room. I told him last night that I would probably set up camp on the sofa to sleep by him. He said I wouldn’t get any sleep then (which is accurate) so if I did that, he’d have the hospital bed set up in our bedroom instead.

I know he’s doing this to try to help me get a minimum of sleep to protect my health, which is very noble and sacrificial of him. But I also don’t want him to do it. I want to say fuck sleep, fuck my health, just let me soak up every last second of time with him that I can. Because far too soon, I won’t have those opportunities anymore, and I honestly can’t even bear that thought.

I’m not ready for this

I am increasingly realizing that I really don’t have the means or the emotional tools to get through this.

My husband is going to need me to fight for him bright and early on Monday morning. His oncologist wants to keep him on chemo and I just see that as an increasingly poor choice.

I know a lot of his symptoms now are due to pneumonia, which is obviously going to make anyone very sick.

But what I don’t know is if the pneumonia is even really treatable because he has the malignant fluid in his lungs. I guess I’ll ask the doctor about that on Monday.

What I do know is that he’s in no shape to get chemo this week, no matter what his oncologist says.

What he needs is adequate pain relief and his doctor is very unlikely to give it to him.

And I don’t know if it’s just because of the pneumonia or not but it feels like his condition is touch and go already. I’m afraid to sleep because I don’t know if he’ll be waking me up again to take him back to the hospital.

I helped him take his blood pressure and use the pulse oximeter before I could finally go to bed and both were in acceptable ranges, although his blood pressure was pretty high still.

I am just thoroughly convinced that his oncologist is going to try to persuade him into taking more chemo. The chemo clearly isn’t doing the trick anymore, though.

I am more and more convinced that hospice is the way to go, to salvage what time he has left. He was eating so well when his pain was well-controlled in the hospital and now it’s not.

Listening for sounds that he might be taking a turn for the worse has me constantly on guard. And that’s to say nothing of how he’s doing. He’s obviously suffering a lot right now.

I just want his suffering to be over and for him to have a few good days left. If he stays on the chemo track, I don’t think he will.

I have to fight for him and get the help he deserves. The man I have loved for my whole entire adult life deserves so much better than this.

I’m scared.

Everything feels like it’s happening too fast.

J was released from the hospital yesterday and I think it was probably too soon. He tried taking a shower last night and afterwards he seemed so woozy and out of sorts that I thought I would have to take him back to the hospital.

His blood pressure was also pretty high (which he knew because I bought him a blood pressure monitor at the store yesterday.)

He does have malignant pleural effusion. From everything I’ve read, the chances of that coming back in the next 30 days are over 90 percent. I don’t know if he’ll need to be hospitalized again for it or not but I would assume so.

He’s on oxygen at home. Though his nurse said in discharging him that he didn’t have to use it at night, he only lasted about an hour and a half before going out to get it.

Then, he needed to go out to the sofa a few hours later. Yes, that meant that I couldn’t bake the Christmas cookies I wanted to before Amy comes over tomorrow. But more importantly, it worries me a lot that he just can’t seem to get comfortable anywhere.

Supposedly, the oxygen is only temporary until he recovers from the pneumonia and he’ll start feeling a bit better then. But I have to admit that I’m finding that really hard to imagine right now (especially given the high rate of recurrence of the MPE.)

I also looked up the survival rate of MPE as secondary to colon cancer and it really wasn’t good. I don’t know how to advise Dylan about going back to school but I think the chances of J dying while he’s at school are unfortunately pretty high.

Another thing that now seems kinda silly is that I told him a long time ago, around the time he was first diagnosed, that I wanted him to write letters or make videos for me and each of the kids before he died.

He always said that he would do that when he knew that he was at the end but didn’t want to do it prematurely. I was always afraid of something like this, where the end didn’t come in an orderly fashion. I can’t imagine that he’ll get to it now.

And I don’t know why that was so important to me. I guess I just wanted some written reminders of how much he loved us. Maybe some videos that I could watch when I was feeling lonely and sad.

But really, he already spent his life showing us that, and I have a whole box full of cards that say how much he loves me.

I do worry more about the kids. He’s always been the type who showed them his love in actions more than words. I think that will be enough. I think it may have to be.

I’m also extremely worried about my finances, especially if he goes on disability soon (which he might.) I still have over two years until I’m eligible for social security survivor benefits and it might take a long time to get the life insurance payout.

But I would be a jerk if I focused on that now. For now I just have to try to take care of him as best as I can.

I guess I am going to get up super early and go to his appointment with his oncologist on Monday morning. Part of me thinks it won’t do any good and I’ll just be wasting my breath.

His oncologist wants to keep doing chemo but honestly I think it’s probably past the time for him to be on hospice. I know he wants to avoid that because he wants to get better; I’m just not sure how realistic that is.

He’s suffering so much and it’s so gut-wrenching to see. It’s not that I want him to die sooner and maybe he can indeed get better from the pneumonia. I just fear that he’ll keep pushing himself way past the point where he could get real relief from hospice and I’m just going to keep watching him suffer.

I want to remember the good times we had together but I feel like they’re getting buried under the trauma his current circumstances are causing. It really does not seem like a good death at all.

Weeks or months

That’s essentially what I’m waiting to find out. J will finally get the results from the cytology lab tomorrow of the lung fluid they drained from his lungs.

Although I should really know better than to put my medical research skills to use, I couldn’t help it.

If the fluid is malignant, the median survival rate is four months.

Of course, Dyl has the extremely difficult decision to make about whether to go back to school next month. J may indeed last longer than that, in which case Dyl would be glad to have gotten another semester under his belt. But there’s absolutely no way to predict how long J will be here. I don’t envy his decision at all and I feel like that’s an awfully heavy choice to make when you’re just 19.

I’m actually going to wake up really fucking early to go with J to see his oncologist on Monday (assuming he does have MPE; I’m not sure if I’ll go if he doesn’t have MPE.)

If it’s not malignant, he may have longer. But now that it’s metastasized to his spine, I don’t think it will be much longer than a year. I’m unfortunately now prepared that I could lose him at any moment.

Apparently his hospitalist called his oncologist yesterday and brought him up to speed. His oncologist is still moving ahead with plans for more chemo, saying that he’s hopeful that a drug that my husband will get called Neulasta will enable him to get treatments more frequently by not causing his immune system to bottom out.

But I’m not sure that’s really the best course of action—especially if J has MPE. If he has MPE, everything I have read says that the focus should be on palliative care and keeping him comfortable. I understand that an oncologist wants to keep patients on chemo—not for any nefarious reasons but just because they believe in it so much and don’t want to give up.

Mostly, I just want to see J stop suffering. I don’t want to remember him like this. I want to remember him how he was even just a few months ago, when we could do dumb stuff like laugh at stupid shows together and have occasional conversations about politics. He’s not really like that anymore; he’s just suffering.

I am starting to think that his oncologist would just keep him on chemo until the day my husband dies. And I want my husband to have some days again that are moderately free of pain.

My mother-in-law, J’s stepdad, his sister, and her husband are going to be coming to visit us in the next few weeks. I’m really glad that they’re coming.

But I’m also just a bit stressed out, too, because my office, bedroom, and bathroom are really unacceptably messy. I’m sure no one expects perfection but it’s really to the point where I think nobody could overlook that.

I’ve known that I had to clean them for a few months and I just haven’t gotten around to it yet. I don’t know if it was a matter of not having enough spoons to do it or if I was just depressed. But now I really do have to do something about it and soon.

I guess it will be good to have something to distract me. But Chloe has also noticed that I keep taking on more and more to do, like I’m afraid of having free time. And maybe she’s right; if I have free time, I just think about the fact that I’m going to lose J and that makes me feel so helpless and hopeless.

I know that I’ll ultimately be okay once J’s gone, in the sense that I will be able to move on somehow. But I really don’t want to.

I finally broke down and cried yesterday when I saw him. I guess everything I’ve been bottling up inside finally bubbled out.

I just can’t believe that we’re already planning our final goodbyes. My parents are going to see if they can come down, too.

It really, really shouldn’t ever have to be this way.

I don’t even know

This is all happening so fast. I don’t even know how to process it.

Yesterday, they did a full-body scan of J to try to identify the cause of his knee pain. While they didn’t find that, they did find that his cancer has metastasized to his spine.

They didn’t have the results yet about the type of fluid that they found in his lungs, so we don’t know yet if that’s malignant or not. I guess we’ll have a bit better of an idea once we have those answers.

At least they upped his pain relief so now he’s more comfortable. But I don’t even know if he’ll be released tomorrow or not because they’re also waiting for his kidney function to get in the normal range. It’s coming down but very slowly.

To be honest, I don’t know anything about his life expectancy now. His oncologist is maddeningly vague about that and J never asks. In the past, I understood that viewpoint.

But now that he has bone mets in his spine, that changes things a lot. Now I would at least like to know, if his life expectancy is closer to a year or if it’s just a few months.

One of the reasons I’d really like to know that is so that I can advise Dylan accordingly. If J is going to make it until the summer at least, he wants to try to continue his college education. He’s going to take off a semester when my husband is at the very end but he also doesn’t want to take time off too soon.

Dylan is really, really struggling to know what to do about going back to school. Honestly, I don’t blame him a bit—this has to be one of the most agonizing choices a young man could have to make. He doesn’t want to lose education time unnecessarily but he also really wants to be there for his dad.

I’ve been talking a lot with the kids and it’s interesting to see how differently they’re handling it. Amy is a lot like me, very worried but also very pragmatic.

Dylan is having the hardest time by far. He doesn’t like to talk about it much. In that sense, I think he’s like J and that worries me. He did see his girlfriend for a while yesterday and he’s been going on walks, which is good for him. But I can also tell that he’s bottling up a lot of his feelings, which I can’t imagine being good for him.

Oddly enough, Chloe has really stepped up to be a source of comfort to me and she has a very good way of calming me down when my thoughts are racing.

She committed to me yesterday that she will help me with the rent—even down to splitting it in half. It will require tightening our belts for sure, especially until I’m eligible for J’s social security survivor’s benefits. But I think we will make it.

As she put it, even paying for half our rent here is still so much nicer and more comfortable than anything else she could get for a similar price (and it also gives Dylan a place to stay while he’s on breaks.)

I also mentioned selling J’s car to her and she was overwhelmingly in favor of it. We only owe $6000 on it and the Kelley Blue Book estimates its value at almost $9000. She’s driven the car before and knows it’s good. It’s a 2013 Toyota Corolla and has had all the maintenance done on it. It will probably go for another 150,000-200,000 miles. She feels great about buying it and can even pay for it with cash.

However, my name is not on the title at all and I don’t know how to transfer it. Once my husband can no longer drive, I just have to hope that he’s still of sound enough mind to help me figure it out.

So while I’m still praying for a miracle for J, it’s starting to become clear that I may not get one. And I’m trying to figure out what my next steps for survival will be. At least I know that I most likely won’t become homeless or need to move right away, which is a huge load off my mind. I’ve spent far too much time thinking about what happens if I become homeless and frankly it scares the living daylights out of me.

Thank God for Chloe, honestly. Dyl won’t have to drop out of school entirely to help me survive and I feel like that alone is a big gift we can give him. And once I’m filing taxes as a widow, he will surely get a lot more in grants. He really does have a good shot at making it, even despite the heavy obstacles he faces.

But Chloe is so calming and positive and I really appreciate that so much. I got more hugs from her today than I have in months and I admit that I really needed them. She brought me out of what was honestly kind of a tailspin.

I would never recommend this to anyone else; it’s absolutely horrible. But just maybe, it will be okay.

So now my attention is back where it should be: on the absolute unfairness of losing my husband so young. Just a year ago, he was NED and got off chemo. We were so full of optimism then. That optimism is so hard to hold on to now. I really have to remember the good times and try to keep them in the forefront of my mind because it’s way too easy to imagine the worst.

Still waiting

So he’s not being released today. They don’t have the results of the lung fluid test yet.

They finally did another test about the pain in his leg: a bone scan to see if the cancer has spread there. This seems so fucking obvious that it makes me really angry at UT Southwestern.

He has seen specialists there about both his chronic cough and his leg pain. They essentially dismissed both complaints.

They gave him Advair and a rescue inhaler to manage his lungs. They never once considered that he might have MPE, even though it’s a common problem for cancer patients.

They basically did nothing about his leg. They tried prescribing Lyrica and Neurontin, which did nothing. And then they essentially shrugged and stopped looking.

He’s at our local hospital and they’ve actually discovered the fluid in his lungs and drained it and now they’re doing a bone scan to determine if the cancer has metastasized. All of these things seem relatively obvious.

And UTSW seems like they should be better and based on reputation they are. At least the neurologist I saw there determined that I have leukodystrophy and not MS. But now I’m wondering if he should have just stayed in Fort Worth and asked to see a different oncologist.