Category Archives: on life

Larry’s West Coast Memorial is this weekend

I haven’t posted yet my thoughts from around Larry’s funeral earlier this month back in New Jersey, as I’ve been chronologically adding back in journal entries to the site.  Needless to say, the funeral was a lot to deal with.  This weekend, we are having Larry’s memorial for those who were not able to make it to New Jersey for the funeral or sitting shiva.   It will be at my wonderful friend Barb’s house and I think it will be much less intense than the funeral.   I can’t deny that I’m starting to have some stress about it, as this will be a lot of people who were in my and Larry’s lives on a regular basis all coming to think and remember him.  These past two weeks have not been easy – Larry’s absence is entirely all-consuming.  I don’t know who I am or how to be without him.  And that will be first and foremost in my mind as we celebrate him this weekend.

I should probably relax a little though – I’m going to have so many friends around me, as well as some family.  Not sure if I’m going to say anything, but if so, it obviously won’t be the same as what I said at the funeral.  I’m happy that Michancy is coming into town tonight.  I’m going to take tomorrow off as I think just relaxing is needed ahead of this weekend.

While futzing around this site, I found myself back in posts I made back in 2008 when Larry and I were first starting to date.   I then cried when reading the post when I asked him to be my boyfriend.  I can remember those moments so clearly, but it is so nice to have something written down from at the time to see how optimistic and hopeful I was.   Let’s see if that kind of energy can return to me.

Larry Loved: Stereogum’s ‘The Number Ones’ article series

Don’t hold me to this, but I think I want to capture some of those things that Larry loved and write about them on my site.   Something that immediately came to mind was the article series on the Stereogum website:

The author, Tom Breihan, has written about every single #1 song on the Billboard Hot 100 charts since it’s inception in 1958.   As of today, he’s currently up to January 1979, where we are still apparently in the clutch of disco (nothing wrong with that).   Larry loved to always talk about what song was #1 during someone’s birthday – on his birthday, it was Earth, Wind & Fire’s “Shining Star”, which really is a fantastic song.

For my birthday, it was one of Larry’s favorite bands:  Chicago’s “If You Leave Me Now”.   I narrowly avoided it being Rick Dees’ “Disco Duck”, so thank god for small miracles.

This past year, Larry thoughtfully sent along the article for when it was ABBA’s “Dancing Queen”.   The write-up is beautiful, frankly, so read it, and the song does mean a lot to me.   It was the last song we danced to at our wedding reception, and just for that alone it will be forever special.  Plus, it’s just pure ABBA perfection.

Larry just loved lists like these – he was so happy to get the comprehensive book containing the listing of every Television show up through like early 2000s.   It was something I loved so dearly about him, as he was just so into stuff and I couldn’t help but be into it too.

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.

Clinical Trial Thoughts

It’s my 3rd week, already, on caregiver leave.   It’s stunning how fast time goes.  The morning was a little bit mellow especially with all the company having returned home, or flying home that morning.  What was nice is that our house’s garage got ventilation slats installed on the door, so hopefully that will help with smells.  After that, Fran and Joel stocked up on some groceries.  Also, Larry’s dad called and has been working with Alyssa to talk about visiting.   I had to bring it up with Larry and Fran together, as obviously something is going to have to give, and there’s no way Fran and Doug can be in this house at the same time.  So we’ll have to figure out a multi-day plan in which Doug is here and Fran leaves, whether it’s to a hotel or back east.

Today was the day we met with Dr Goldman in UCLA’s research section, out at the Santa Monica office we’ve been at.  He ended up being a very lovely man, who also has a great associate Brandon he works with to schedule things.  We have 3 options to look at:  1) Larry keeps doing the current chemo, which has diminishing returns and still is causing increased neuropathy; 2) do nothing either way, and try to enjoy the rest of his time, hopefully not in as much misery in the process; 3) sign up for this clinical trial, which is not immunotherapy but is instead a directed therapy that has been used in ovarian and breast cancers and has some luck there.  The directed therapy has a 22-day period for the first phase, with a lot of monitoring that goes along with it.  A 2 week cooling period off is needed from chemo, which would correspond to the cycle we’re on anyway.  There’s no guarantee this will help Larry.  The side effects seem to be less intense than chemo, but again, this could just be for research and nothing else.  But I think quality of life impact would make the clinical trial option a better thing for Larry.  I don’t know.  We are thinking about it but want to let them know asap.

We went to Denny’s for dinner afterwards, and Larry was up for that.  He actually ate a half of the Moon Over My Hammy plate with Fran too.  It was a happy surprise to have that happen.  What a day.

Now we’re watching more Apple TV – including The Morning Show.

I know I could maybe do this on my website, but I’ve found that sometimes these off-line notes end up being a great record that I can easily paste over there.  I don’t think I can do this chronologically, so instead I’ll work backwards.

A Full House for Thanksgiving

Thanksgiving!   This was a long day.   It was raining fairly steadily that day, continuing the fun from yesterday’s intense amount of rain.   Was able to relax in the morning but then went to go and pick up mom (Michancy came with) from Duarte for some Thanksgiving fun.  Happily traffic in LA during Thanksgiving weekend is basically amazing, so no issues except for having to drive in lots of rain.  Mom was ready, of course, with the way this year has been for her, it’s just sad to not see her the same as she was just a year ago.  Regardless, got her back here.  Nicki was here by then and she had brought an insane spread of food as appetizers.  Insane.   Every platter had individual labels. She’s too good for all of us.

Jon and Alyssa were flying in this day, as that was the only time they could get seats for all 4 of them (including Stacey and Rachel) together.   So they weren’t coming in till later that day, so we ended up doing a bit of a 2-stage dinner as my mom just really isn’t able to relax or wait.  Even though she had brought soup with her, and she ate it, it was already ‘when are we eating turkey’?   I wonder if it’s social anxiety at this point and she doesn’t know how to deal with people anymore so she’d rather just eat and get it done with.  Anyway, that’s what happened – we got the turkey heated up along with potatoes and green beans, and the food was great, but we had all been snacking on the spread Nicki had brought so I didn’t eat with her, although I sat with her.  That was around 3, and once she ate, she basically was ready to go home.  So Michancy & I drove her home and then we were back around 4:30 or so, and by then, Jon & Alyssa had arrived.

It was great to see everyone.  We had a very nice dinner with everyone, with people spread out across the living room eating.   So much for needing the card table – at least I was ready just in case.  What was funny was that General Tso, Bugsy, and Tigger were very popular with Stacey and Rachel.  Sveta then came over while we were all recovering and after Jon & Alyssa had left back to their hotel, which was nice.