Tag Archives: cancer

A Hole in the World

2 weeks ago, my best friend and my husband, Larry Levene, died.   After 18 months of battling Stage 4 colorectal cancer, he no longer had any more treatment options as the cancer was winning.

In the beginning of 2019, we had gone to the next stage of treatment after his first 6 months of chemotherapy, which had gone well actually with the cancer markers getting drastically reduced.  You can’t keep doing that same treatment though as the oxalyplatin in the chemo wrecks your body and causes neuropathy, which Larry definitely had.  But Zolota, the next drug you take, typically helps.  But with Larry, it was clear it wasn’t helping as his markers were creeping back up.

We continued on through May or June of doing what we could, but Dr Arzoo indicated that there was no more standard treatment available.   So we went to various other places to see what they thought.  We went to City of Hope and the doctor there basically said there really wasn’t much he could do for us as the cancer wasn’t relenting.  That was a bad day in June.  We then investigated options at Sloan Kettering in NYC, and they had an ambitious plan which Larry was a candidate for.  We’d install a hepatic pump that would pump 50x the amount of chemo right to his liver, with minimal side effects.   So we did that in August and September, but he had to stop any other chemo he was doing and he also had to recover from his surgery, which was quite invasive.  But what should have been a way to keep him stable for a few years, time for us to hope for something stronger to be developed, didn’t work.  After the first two treatments with the pump, there was no improvement.  At all.  City of Hope was where we were continuing treatment and the doctor there basically indicated that is all that could be done.

Frantic and hopeful for a miracle, we went back to Arzoo at UCLA for guidance.  He guided us to a phase 1 clinical trial that UCLA was trying.  After about 10 days on the trial, Larry had to go to the ICU as his abdomen was swelling and his liver was failing.   At the ICU, we learned the fight was over.   We took Larry home, got hospice care, and took care of him as he grew weaker and weaker, finally unable to stand or keep awake or have control of his bodily functions, and in the early morning of January 7, 2020, his strong heart finally gave up.

Just typing this overwhelms me with sadness, anger, and grief.  We all die, but Larry was too young to have to be thinking about cancer and one that was so highly aggressive.  He was only 43 when he was diagnosed – the approved age for colonoscopies in men is just recently set to 45.  Not only was he diagnosed, it was Stage 4 as it had metastasized to his liver.  We realize now that we needed a miracle for him to survive; what the treatments did do was at least give him 18 months, but without a miracle, the current treatments just aren’t enough.  We don’t know why he got this cancer.  Was it something he ate?  Something he breathed in?   Who knows.   It wasn’t genetic.  He just had the world’s worst luck, and the world now has a hole in it where he should be.  I can’t tell you how sad and alone I feel.  I miss him so god damned much it hurts.  I look at his stuff or something he wrote and it wrecks me.   It feels impossible to consider what purpose my life has at this point.  I was happy having him as my guy.   We had our life and we were happy.   I don’t want to be single and alone.  I guess I foolishly thought if we worked together and made our marriage a good one, everything else would work out.   But no, apparently fate has it that I should be alone.  My mom is no longer my mom, my dad has said I am released from being his son, my husband and best friend is dead, so all in all, it’s been a fucking hell of a year.  It’s not all bad I guess – my friends have proven to be the support I need, as well as Larry’s family, so I’m thankful for that as there’s no way I’d have made it this past year without them.  But it all just seems so fucking wrong.   He should not be dead.

I maintained a journal the last month and a half.  I’m going to update my site with those posts, so you’re not crazy if you thought I’d not been posting anything.  I hadn’t.

Below is the obituary that ran in the LA Times yesterday (Jan 19).   I loved the picture I submitted for this, and I bought 3 copies of the paper.  I plan on assembling memories of him into a box that I can dive into, and that paper will be one of the things in it.

Rest in peace, my love.   I take comfort that your suffering, as unfair as it was, is now over.

Rest in Peace, My Love

Larry died on Tuesday morning, Jan 7, 2020, at 1:20am. Monday, we were basically waiting on him to finally surrender.  Sveta came over, and we all started listening to the many favorite tunes of Larry’s while waiting, which helped make the mood a bit more celebratory than the dread it had been when it was silent or the TV.  I think I managed to get every song in that he’d have loved, with singing and crying and laughing throughout.  By the time 9-10 pm was reached, Kathleen had left and Edison had replaced her.   We started falling asleep and Edison encouraged us to go sleep in our beds, ensuring us he’d come get us before Larry passed.   Around 1:15 am, Edison woke me up and any momentary confusion was immediately gone as I remembered we were expecting this.  Larry’s strong heart kept him going far longer than what would have been expected of someone much older, but finally he had stopped breathing, prompting Edison to get us.  We were there then as Edison continued monitoring Larry’s heart, and we were holding his hand and head when it finally did stop.  It’s so difficult to write this now – I’m not even sure I can.  He’s gone.  He’s finally free from his suffering of the past year.   I can’t be selfish and want him here still – he truly suffered this whole last year and it was easy for us to look past it and still want him here, but it is a relief that he can be at peace.  I just can’t process having to continue life without him.  We were a pair, and not having my other half leaves me devastated.  For Fran and Joel, it’s obviously the same intensity of loss.  For so many others, there is a profound loss recognized too, as Larry just was special for so many.

The rest of the day was hard.  Joel had made the arrangements with the mortuary here in California that would then coordinate transfer of Larry’s body to New Jersey.  They arrived about an hour later to pick him up – Edison had arranged Larry to be covered except for his face.  A little grin had formed on his face and it broke my heart but also gave me hope that perhaps he was finally okay again. Seeing him get wrapped up and taken away was devastating.   I talked to Stacie and Mila in the early morning, then passed out a little longer back in bed, and then got up and showered as I knew the day had to continue.  Tears and talking followed in the morning.  Sveta came over around 1pm with El Pollo Loco, and then later Nicki and Mila joined us.  It was a time to just sit and be, laughing about stuff and crying at times, and getting things organized for the following days, as we had to go back to New Jersey for the service.   The service will be on Friday, so Joel, Fran, and I flew back on Wednesday.  Nicki and Sveta are coming out Thursday evening, and then they fly back to LA on Saturday while I’m staying till Sunday.  I’m then taking the next two days off and returning to work next Wednesday.  I am not sure how I’m going to do that, but I kind of have to having basically run out of leave.  I’m not taking the unpaid caregiver leave extension after all, which will definitely help financially.  The mortuary is getting the paperwork handled for the death certificates, and then I’ll have to start all the processes of taking over Larry’s accounts.   It’s going to be a long process, emotionally and legally.  But the next few days are going to certainly be the hardest in a while, as laying him to rest still makes me uncontrollably sad.  Another memorial will happen in LA later, but not planned yet.

So we’re on the United flight back to NJ on this Wednesday morning, with Fran and Joel having packed up all their stuff and heading back home.   I’m unspeakably tired as it’s not easy to sleep yet.  Day by day, I guess.

Right Before the End

We’ve started 24-hour hospice care.   Later on Saturday, Larry started moaning and we realized that we needed to call the hospice number.  I told them what was going on and they agreed, sending Edison, an LVN, over at 6pm and through to 8am the first night, to be able to take care of Larry.  Larry really stopped being responsive at this time, in terms of being able to communicate.  He could grunt and react in pain or surprise to certain things, but we don’t hear words anymore.  That Saturday night, Sveta came over.  It was nice to have her there.  I used that time for us to go through the many pictures I’ve taken over the last 11 years – a nice trip through memories.  We also just drank wine, cried, and helped each other get through the night and this new experience of having someone there all the time.  Sveta drove me to Carl’s Jr. to get some dinner, and then went home.  It was nice to get out of the house.  A happy surprise was that my cousin Rich and his wife Su sent a framed print of the doppelgänger we found at the Norton Simon museum.  It was amazing, and provided a much needed smile.

On Sunday, we then met Kathleen, who was taking the 8am-8pm shift.  Both of these nurses have been very kind and are able to take care of Larry – and I think there’s only been one time the diaper needed changing, and I’m still thankful to Noel, the bather, who came over on Saturday morning to help us out as Larry had filled the diaper that morning and while I had been able to at least get Larry out of it and put a new diaper kind of on him, it was not a solid job.  Noel showed how to do it effectively.  I’ve not had to do it though as we now have 24-hour care.  During the day on Sunday, we watched a couple movies (Casino Royale, Inside Out) and then in the evening, Nicki came over and we all watched the Golden Globes ceremony and had some dinner from Maria’s.  During this time, Larry was basically unconscious and sleeping, although we’ve learned that hearing is the last sense to go, so he is able to listen. His understanding isn’t known and he barely responds now.

It’s Monday now, and it’s getting worse.  His breathing is very labored and his vitals are certainly dropping more and more.  I can’t imagine he will live beyond today, but because his heart is so young still, he may fight longer than he would if he were in his 70s or 80s.  He’s getting morphine and Ativan every hour to try to help calm his breathing, but it really isn’t working.  So we’re bedside most of the time now.

End Stages

These two days were a blur, to be honest.  Larry finally is in what are the end stages – minimal consciousness, although when there was, especially on Thursday, he sometimes understood what was going on but mostly he was upset as we wouldn’t let him hold his glass of water by himself or feed himself, and he would angrily insist on it while I had to insist that he couldn’t.  He more and more wasn’t able to help us with him going to the bathroom, in that moving him to the bedside commode was becoming more and more impossible.  Larry is not light even though you’d maybe think he would lose a lot of weight – there’s not much weight in his arms, but his midsection and abdomen are swollen and heavy.  It takes Joel and me to move him.  On Friday, the hospice nurse came to visit and instructed us to have him wear diapers at this point.  The diapers were delivered at the right point but too late for us to put the first one on as he ended up pissing himself on Friday night.   He had been only in boxer shorts and the flat pads really got most of it although it’s impossible to get it all.  We put a diaper on Friday night and then this morning (Saturday), he pissed in it and most was in the diaper but not all.   It’s a nightmare.  Noel came by this morning and showed us how to effectively change the diapers and the pads without having Larry get out of bed, which is effectively impossible now with the levels of consciousness he has.  He won’t be leaving the bed again.  The nurse yesterday, while also recommending the diapers, also got us liquid versions of the medicine he takes.  In the same consultation, she also mentioned that we don’t need to worry about feeding him or giving him water unless he asks for it.  Effectively at this point, it’s time to let him die.  I keep hoping it will happen overnight as part of me can’t bear to watch it happen, but I also don’t want him scared.   It’s certainly a blessing that he is confused, but also I know that he’s still there mentally.   I know because on Friday, Kristine and Jae from his work stopped by after I had checked Larry’s phone and saw he had received messages from them, and I replied and told them what was going on.  When he saw them, he lit up, was able to hug them, but that’s about it.  I just think he knows what is going to happen and would prefer to shut down and not deal with our sad faces and our insisting on this pill and that pill.  I don’t blame him.  I just don’t know what else to do.  It seems that there’s really not much time left at all at this point.   It’s been over a week since he came home now.  He went from kind of there (watching Star Wars) to this, which is mostly sleeping with an oxygen line to his nose.

Fran and I talk about the situation a lot and today we talked about how this is all something that you hear about and are relieved it’s not happening to you.  We know people feel that way, as I know it’s how I’d feel if I heard about it happening to someone else.  I know I’ve remarked on things like that to Larry in better days, and appreciated him that much more.  But it’s our turn.  I know my heart is shutting down for the future.  I will keep living and working, but I just don’t see how I’ll ever let someone in again emotionally after having had this 11-year experience.  I was lucky, I know that.  I was also unlucky, and I know that.  We did get to have this time together, and so I will always be grateful.  But moving on and possibly having to go through this again with someone else doesn’t seem like an option for me.  Ever.

Fran, Joel, and I are basically now just waiting for Larry to die.  It’s awful.  We can watch movies and TV (interestingly, putting Star Trek Deep Space Nine on has been one of the few things that keeps him somewhat interested, although I don’t think he is really up for watching anything anymore, but we’ll try this afternoon), and it’s a way to briefly escape the mindset of what is going on.   Then Larry moans and is grabbing at himself and it’s clear that he’s gone to the bathroom and you’re forcibly reminded that yeah, life is awful  and death is at the door and you just have to keep yourself from screaming and get to the business of caring for him.  It’s all very hard.  Dying at home is not at all what you might think it could be.   I’m sure in cases, people will die “peacefully” and quickly at home, with little mess and fuss.  That is not the case here.  Do I think it’s better that we’re able to be at home and not stuck in a waiting room – yeah.  But the times when he needs more care are those times when I’d kill for a nurse on call to help.  Larry no longer seems to know or care – but I guess he would know enough that he’s uncomfortable if he were at the hospital.   There’s no easy definitive answer.  It’s all just terrible.  I just don’t think I can do this again for someone.   I am only able to have done this as Fran and Joel were here.  If I had been alone, I probably would have had to have hired some part-time help.  Emotionally though, visits with friends has been essential.  Dying and Cancer are the worst, is basically what I’m saying.

A New Year Begins

Happy New Year, right?   It’s obvious this is the end stretch.  Larry is barely coherent, and when he is awake (which is when we get him up to go to the bathroom or for meals), he gets frustrated at the fact that he can’t be independent.  So it’s good I guess that he does feel those emotions, and that he still does recognize us and can interact slightly during those times, but the most part, he’s sleeping.  And basically drifting away. 4:30 this morning, he had to pee, and then pee again around 6, and he was more animated than typical, and I tried to listen to some of the things he was saying to see if I could get anything from it, but the most that was understandable was that he had a vision, of something after school.  Other than that, it was not much sleep, as I had stayed up to get a NYE kiss with my one true love one last time.  I didn’t drink that much so no hangover to speak of, so that’s good.

We watched the Rose Parade (most of it I guess) and that was nice to have on in the background, although it was hard for both Fran and I to really cope during the day.  I find I do get into a mindset of pushing out reality and I keep my emotions in check.  But some things just will trigger me to sob and get uncontrollable.  I don’t even know what it is – I guess it’s when I let myself think about the situation, and the reality that I am truly losing Larry from the world, forever.  I want to believe that he’ll be at peace and feel release, but I am selfish and want him here with me for a few more decades.  But I won’t, and all these people who get to have their loved ones while I get mine ripped away.  They mean well with their checking in and ‘how’s he doing’ but all I really want is to say I fucking hate you all for getting to live your life and have fun and not have the reality of life shit on your face and smashed into every orifice so that you don’t forget.  It’s so fucking unfair.

Anyway, I played some video games today to just get my head out of things as it gets hard to watch TV and sit in the living room with the gang after a while.  I had bought “PC Building Simulator” on Steam and OMG this game is so therapeutic.  You basically are building, fixing, or upgrading virtual PCs and it’s just great.  Killed a few hours that way.  Besides that, it’s taking care of Larry during meals and when he has to go to the bathroom.  At this point, he can’t do anything himself, so we’re literally carrying him to a bedside commode for shitting, or using a plastic urinal container for peeing.   And inevitably there are spills, as well as wiping his ass.  It’s insane – I don’t mind doing this because it’s him.  The smells are godawful and yes, there’s blood.  But I love him and I actually do take my vows seriously to him.  I, along with Fran and Joel, are here to take care of him until his last breath.  It’s going to all-but-destroy us in the process, but Larry is someone who is beyond worth it.  It just kills me though when he can’t hold his arms up to feed himself, or can’t really stand on his legs, or rants about some thing (a pill, water, food) that is right in front of him but he’s completely unaware.   It’s just awful.

I’m taking the rest of the week off too – and have reached out to PwC to let them know I’m probably going to take a few weeks of leave of absence while this runs its course.