"It's been seven hours and fifteen days..."

Funny how life  is.  Lily and I were just talking about this song about 2 week ago.  A unseen Prince video version of himself was captured on camera and leaked. You probably saw it or heard the story but as little as I knew, I knew it was sort-of a big deal in the music world Prince never (if rarely) performed it.  

As we all know, Prince authored the song but gave it to Sinead O’Conner and in the early 90’s it became a huge hit.  So much so, Lily and I both had a copy without the other knowing it.

While Lily’s passing wasn’t exactly in the same time frame as ours, it is pretty damn close from when she “took her love away”, or in my case, the physical mind began it’s downward spiral.  The last 7 days were incoherent or silent, while the previous week - her speaking abilities started to wane.  Anyway, enough of that.

The past 24 hours, obviously have been rough on me.  

On all of us. 

Lily’s mother called me after returning home and attempted to give me more details (as I was enroute to the hospital when she died).

I was about 20 mins away from the hospital and they were going to ask the nurses to leave Lily in bed until I got there, so I could say my final goodbyes.

I, of course, already believed Lily was gone a day or so ago.  Spiritually, I mean.  

So, I said “no”, and I turned my car around on the 210 and went back home.

I didn’t want dead-Lily to be the last image I had of her.  I just didn’t.

The mother understood it, crying on the other end of the phone.

Back to the mom’s call to me last night, she did answer some questions I found myself suddenly wondering?   Did Lily regain any sort of consciousness in the final moments? Did she say anything?” 

“No,” mom replied.  

“Did she move or physically act out in any way during the final moment?” I asked.

“No,” the mom replied.

“Was she in pain?”

“No, she actually appeared at peace, hon'.  No big final breath or exhale,” mom continued to cry.

She then said something unexpected to me.

“You were smart to turn around as I am a little saddened that I saw it.  I was even holding her hand, when it happened.  The only thing I DID notice was that her-already-shallow breathing became even shallower. But the main thing I noticed, was that her hand started to get cold”.

To give that comment context, Lily was “running” hot for the past 10 days.  The explanation given was that while Lily appeared calm-ish on the outside, her body was waging a war on the inside.  And that war produced overheating with a fever and sweating.  In turn, the staff placed cold packs on Lily’s body, water soaked washcloths on her forehead, etc.

Her mom and I hung up the phone with both of us sobbing.

This morning, I guilty feel some relief.  I know that Lily is now out of pain. 

And that was the goal of this whole journey.  

Except a miracle, which didn’t happen.

Lily just passed away.

Just this minute.

She's gone.

Heart & Lester....

That is what's keeping Lily alive. I hadn't noticed it before yesterday, but Lily is one of the youngest in the hospital's hospice floor.

Despite the aggressiveness of her cancer, her heart is relatively strong. According to the hospice doctor, most patients at this stage of lung cancer are quite feeble or frail.

Lily is not. As I'm sure you can recall the last time you saw her alive, she was physically fit; hence, strong heart.

As I left the hospital yesterday and came home, I sat down to have a frozen dinner. I was watching the Nightly News with Lester Holt. During one of the news segments, I missed a key word in the story.

Without even thinking about it, I turned and said aloud "what did he say?"

I looked over at the place Lily always sat with her dinner and would answer me.

But this time it was empty.

I must have stared at that spot for 5 minutes. Thinking of all the times I have done that. Hundreds.

And, now, how I'll never hear her voice answering me.

Halfway

There's a famous quote, (not the one Brando is about to speak above).

But something along the lines that "...if you do anything for two weeks straight, it stops becoming a chore and turns into a habit."-author unknown.  I tried to Google it but to no avail.

Lily has been out of our house for one week now, since this last go around.

A  little more, now that I think of it. Maybe?

Those first few days of Lily coming home last week are all a blur to me now.

One thing that wasn't a blur to me was that I had absolutely zero thoughts that it would be the last time.  The last time to be in her favorite robe, kissing our dogs, sleeping in our own bed, together, etc.

I didn't even think it was a remote possibility.

And while I believed I'll never get used to it (like last night), I know that I will.

For some strange reason, I dreamt last night about the scene above.

 The feeling (as I read from a respected psychiatrist years ago - wrote that the content of our dreams are not ALWAYS more the important data points of them - instead, it is often the feeling we are experiencing while in our made up dream).

And as I was in the room with these actors/mobsters/families, I felt I was part of something bigger.

More than just myself.

I was being included.

I wasn't alone.

Holding Her Hand....

Lily was adamant about NOT having her picture taken when she was conscious.  

Well, she has not been conscious for the past several days.  Her cancer has spread from the lungs to her bones.  

Lung cancer is the second most painful cancer to endure, according to the AMA.  And the first?  If you haven't already guessed it, is bone cancer.  And now, she has both.

Lily is bald and she is puffy from the waist up.  It's a buildup of fluids.

She stopped eating and drinking almost a week ago.  Our bodies (when having an internal war, like cancer) shut down the organs but also keeps some fluids in reserve when it knows its' life is at stake.

At least that's what we are being told.  

And if you didn't already know, "Hospice" workers lie to the families of terminal patients.  Just google it: "hospice myth or lies".

I did have a feeling that we were being told exactly what every family wants to hear from a hospice worker.  Call it 25 years of investigating people lying for money, facts of a loss, whatever.  But my occupation has definitely finely tuned my b.s. detector.

And I knew they were b.s.ing me day one.  "Oh yes, they can hear you....Oh they are aware of their surroundings....And please forgive them for any old resentments you may have, tell them how much you love them.  Tell them now".  I first heard that 6 days ago.

It almost sounds like a time share pitch.  I can almost hear them reading from a manual.  A manual for managing "the families" pain.  Not the patients.

So, as I sit here, holding Lily's hand, sobbing, as usual, I'm just in complete disbelief that she and I were having a normal conversation only 10 days ago.  Wow.  A little more than a week.

What a horrible spiral this has been.  The death of my own mother was a 3 on the scale of tragedy.  And Lily's is a 10+.  It is unbearable, at this moment.

I can still clearly see and hear in my mind's eye, her saying "[My name] don't let me die catatonic in some random hospital bed.  Suffering.  Please just pull the plug."

Yet, here we are.  

I don't have the energy complain about it, anymore.

Lily is dying.  Period. And a big part of me, with her.

Hospital Cafeteria

It's Memorial Day weekend. A Saturday. Rhonda's parents were just coming up (2nd floor) as they have been living here for four days? Five days?

They warned me that the cafeteria was only 1/2 open due it being a holiday and a Saturday. From the picture above, it looks about 1/10th open.

I visited Rhonda for about 5 mins and then realized I only had a piece of cheese this morning.

I squeezed Lily's hand but I told her I'd be right back.

When I grew up....

My dad lost his best friend/neighbor, when he was was 26?  27?  Both men were young.  Black suit men.  That much I knew.  Also, that this best family friend died from a disease.

His daughter used to babysit my brother and me.  She was about 12-14 and my brother and I were around 6.  I'd seen the Super 8 films enough times, I can still remember my parents narrating the scenes behind us, from the couch.

Adding names or places to the often various blurry segments. Birthday parties, Christmases and the occasional extended-vacation-visits from relatives or close friends.  It was common back then, for us.

Everyday life.

And on a few occasions, my dad would film our babysitter (eg my parents were coming home from a long tip) filming their house from their cab of the babysitter, as she emerged running into the frame.  And sometimes, only a few, her father would burst into frame, too.

Looking like Don Draper. Holding a dark brown bottle.  That was my dad's good friend. I'll call him "Bill".  Bill was the one that died young from a disease I couldn't even pronounce.  Leukemia. 

In any case, I thought of Bill and my dad as I drove to an empty home from the hospital today.  Why?  Well, anytime his name would come up when I was a kid, my dad or mom would  frequently say " God, how Bill tried to fight it" or "That was the worse experience," one would would say.  

"Why mom (or dad)?" My bother or I would ask.  

"Because he didn't want to die," our mom explained.  Sensing our confusion, she would continue "Yes, some people honey don't mind dying.  It's usually because they are very old and have had a long, good life.  But our friend did not.  He was too young.  He loved living here.  With his family, wife and daughter, his friends, just everything.  He just didn't want to go".

That is exactly how Lily felt just a week ago.

And visiting her today.  In a hospital.  

Almost a hundred percent unconscious.   

I held her hand for hours today.

One of the hospice nurses told me after I pressed for an honest answer,"She probably won't make it through the weekend," she plainly said.

Memorial Day.

Just a few weeks ago, Lily excited jumped up and down after a doctor visit, "I'm gonna see Christmas! I'm gonna see Halloween!"

And then as things got worse within a few days, Lily would say, "I don't want to die, honey.  I don't want to die."

Ooooohh...my heart breaks!

She repeated that to me on this very same couch that I am typing this.

"I don't want to die, honey.  I really don't want to die," she would cry.

At this moment, I do not know how to move on.

Better & Worse

I just spent 4 hours at Lily's bedside.  Holding her hand.  Holding her arm.  The room was quiet and dark in the middle of the afternoon.  In the shadows, I could see Lily's dad on a chair a few feet from the bed and Lily's mom was lying down on the makeshift floor hospital mattress.  And then Lily.  In her bed.  Her breathing with a nose/face clear mask fogging and defogging.  Her breathing was more labored, again, than yesterday.

Immediately I was sad.  The mother then sat semi-upright and tapped the now open section of her mattress, silently begging me to sit next to her. 

I did.  We were better than the previous few days. It felt good.

I asked about any overnight observations and she pointed her whole open hand at Lily in bed.  As if to say, "just this".  She began to tear up.  And then sob.  No words were spoken.  Within a few minutes, I was magnetically pulled to the her same emotional place.  In total quietness.

A few scenes played in my head, Lily petting a donkey in Africa, us eating sushi at our favorite place in Encino, or just laughing at something on TV. 

I purposely dwelled in each one because they were small. And by looking at each one for some detail I may have glossed over, or saw it in a different way.  A technique I used a lot when I was a tobacco investigator.  Interview a witness for hours.  Never taking notes.  Then quickly dictating bullet points from our head(s). 

And without fail, when we got to the smallest ones, they were more often than not, the most important ones.

Like right now. Again.  That's all I have.

Bumping Shoulders

 

3:02 a.m. - What day is it? I don’t know.  Date?  No clue.  That’s the one thing I forgot about being on a “leave of absence”, especially a grieving leave, is that you lose a sense of time.  Calendar time.  Not hourly time. Hourly time you become almost hyper-aware of.  “[To Lily’s mom], I’ll be at the hospital by 8:30am...[Dog-Walker], I’ll meet you at 4 pm sharp....or...[To myself] Shit! It’s 9:20 am and I haven’t fed the dogs”. 

Back to date, I recall hearing a nurse mention her plans to another nurse about her plans for Memorial Day and they sounded neari-ish, so I know we are in mid to late May, but that’s it.  

And this descent into hell began the last week of February or first week of March. I think?

I can vividly remember speaking with Lily the first time we heard she might have 4-6 months to live: “I’ve maybe got to July,” Lily sadly said.  

What a horror show it’s been.  Mid-May.  Fucking hell.

At the hospital today, I mean yesterday, I ran into this Asian-hippie-ish chick, gal, lady, woman, whatever.  I think her name is Chang.  She visually stands out with her I-don’t-care but I-so-despately-care-about-my-look.  

She was wearing a full length green infantry Army trench coat peppered with round lapel buttons on the collar, as well as sewn on patches in a random way all up and down the jacket.  She also was wearing Sally Jessy Raphael neon red frame glasses.  

Like an East London Asian punk rocker.  Or an older hippie in the Haight-Hashbury district, today. 

Both thumbing their noses at the “man” even though they’re both well into their 60’s and have morphed into “the man”. (Lily and I have been to both of these places and saw these archetypes.  And, admittedly, giggled a little, “with” and not “at” them, I like to think). 

Hmmmm...now...I think, maybe I’m writing this “to” Lily and not just “for/about “ about her.

Yesterday, as I was coming out of the elevator on the 8th floor, Ms. Chang, absently mindedly entered.  We bumped shoulders and looked up at one another.  She immediately put her hand on the elevator door spine, to prevent it from closing on us.

“Oh hi!” she exclaimed just a fraction too enthusiastically.

“Oh hi,” I repeated back with less enthusiasm as my guard went up. Where have I seen her, I thought?  Another hospital? Cafeteria? I know her but....she cut my thoughts off:

“I’m the Senior Director of ABC Hospice LLC.  We met a couple of days ago at [hospital #1].

“Oh yeah,” I replied.  Still soaking in her buttons.  Some too hard to read but a few easy to digest.  A small black button with a bright but wilting sunflower.  Strange, I thought. What message is that sending?  Dying? Really? 

I then focused on another black button. But this one had the international peace sign in white.  That made sense.  One of Lily’s favorite artistic pieces, we have some wooden ones hand crafted from wine barrels on our walls, a stainless steel one on her keychain and one of two on the back of her favorite robes she wore every morning.  Even in vacation.

But it’s that fucking wilted sunflower that gnaws at me.

+.

1:22 am nightmare....

The nightmare begins:

Lily and I are on vacation.

We are in a hotel room. (A beach hotel, which Lily thinks are a waste of money - good Lily, think).

So, I know something is off as to why we are here. A beach hotel? I don't remember booking this?

But I don't think it's a dream.

I was laying on my side in the bed looking at Lily just was five feet away. She was standing and packing in the hallway.

But she wearing her hospital gown?

Now, I thought, am I awake? I'll test it I thought, I'll ask her a question to force her interact with her.

"Where are you going?" I asked.

No response.

"Where are you going?" I asked, a little louder.

Nothing.

The third time she turned around to face me. 

Looking at her, eye to eye, I knew that this was definitely post-cancer Lily. Dying Lily.

Her bald head, the bulging of her eyes from chemo/ weight loss. All of It.

"I'm going away," she happily said. With her innate cute smile.

My mood dropped.

She repeated it about three times, in sing-songy way, as a 4 year girl would do. "I'm going away, I'm going away, I'm going away," she went on and on.

Despite the over-the-top symbolism that I was being clubbed over the head with, I was unable to connect those huge dots together.

The feeling I had was not of her cancer, dying, loss, sadness, etc.

Instead, in the dream (or the nightmare, as I titled this) I just wanted to know one thing.

Where was she going?

And I never got an answer.

Bad Update...

I just received an email from Lily's mom (who is sleeping beside Lily on a floor-mattress). A shift doctor just upped Lily's morphine and advised that her breathing is more labored.

Awwwww god.............

This is how I picture Lily Resting...

Lily is at Verdugo hospital.  She didn’t want hospice care at home. 

Specifically, she didn’t want us to watch her die.

Lily also has “air hunger”.  You can google it. I did.  She was also afraid of being released without anybody skilled enough to treat those episodes.

And she was right.  Verdugo has a hospital wing for hospice, so our home hospital ambulance’d her down there to kill two birds with one stone.

Being there, last night, was awful. I couldn’t take it for more than an hour.

I left and got home. I passed out sobbing into our bed with the our girls flanking me.

Now, I dread going down there this morning. I actually feel sick.  I know Lily is on a morphine drip as her mother slept in the chair next to her all night.

Going quietly into that good night seems like a cruel joke to me now.

Let’s document this....

I heard voices for the third night in the past week. It's always the same words: "[My Name!]..[My Name!]...[My Name!]" It sounds like Lily is on other side of our sliding glass door, which is nearly sound proof. Desperately try to get my attention. I can't tell if I am dreaming or not. Her voice calling me is muffled. So she starts, yelling.

I am aware enough to know it can't be Lily but I want to believe it is.

I generally open my eyes and stay completely still, when that happens. In the darkness of our bedroom.

Listening in between the snoring of our girls.

Almost frozen-like.

And Scared.

2 Lessons

I had a 4-hour visit with Lily in the hospital this afternoon.  I was giving her mother and step-dad a break as they had been there for ~5 hours straight.

Lily and I had a very lucid talk, which is strange.  In fact, as I entered hallway M-137, I could see her mom talking to a doctor I didn't recognize.  I learned they were talking about Rhonda's release day. The doctor was expressing that there was "no need to worry" about being ejected too early (Rhonda's biggest fear).  That the doctor said he had it "in control" with the insurance company.  Rhonda will only be released when she feels stable enough to go home.  And at this moment, she does not.

"Hmmm," I wondered.  Why is this doctor speaking as if he got the insurance company "in control?" 

Well, lesson 1 of the 2 things I learned this afternoon is that the hospital does not think she has long to live.  Maybe, at this point, a few days. At most.  

The #2 of 2 things I learned today (and this came directly from Lily, herself - later confirmed by both mom and dad as we did our shift change), was that Lily does not necessarily want hospice care.  At all.

She said to me "[My name], this is going to be so hard on you.  So hard," which I responded "Honey, we all are prepared to handle this.  Including me".

She didn't respond.  Instead, we slipped into some Royal Wedding conversation as it was on the TV connected to her bed.

In short, Lily wants to protect us.  She doesn't want us to watch her die at home.  

And the hospital, doctors, and insurance company are all apparently on board.

Well, that's all I can write for now.

Scared & Frightened

That is what death looks like up close and personal, I've discovered. Lily, who previously begged no to be re-hospitalized on Tuesday is now begging to not be released from the same hospital.

I'm at home, as I hired a maid service to arrive today and have the house clean once hospice and Lily were supposed to arrive tomorrow.

Her mother is with her at the hospital and Lily is frantically worried about coming home because of all the tubes in her, doctor visits, etc.

I think she is equating home with death.

Plain and simple.

Even though they are not treating the cancer any longer, she is getting worse. Her esophagus has begun to close up again due to the rapid tumor growth to nearly a pin hole.

So, she's struggling to breathe again there or here.

Perhaps this is her real final wish.

To die in the hospital.

Fucking hell, this is becoming almost too unbearable. 😂

Up at 2:12 (again) with a small note:

Old habits die hard.  Lily and I used to wake up together almost every night before she got sick at 2:12 am.  Anyway, Lily has been receiving text messages on her phone from various friends.  She can't find the strength to read them, let alone reply.

So, I've added an email form to the top right.  I will save anyone who wishes to email her and likely mention them to her as the end nears (ie she will be in a more comfortable

state).  Realize, that the emails will go straight to me but I will have them auto-routed to a folder just for her.  

If you have a question for me and you do not know my email address, just put "Question" somewhere in the subject line and I will open the email, read it and respond as best I can.  Thank you for caring.

P.S. I've turned off the "comments" function after I realized that Lily would have to read the entire blog to hunt & peck for those that comment.  Now, with an email form, I can store and present them to her at once.

Bath for the girls...

Lily is coming home.  It was up in the air for bit but it has been settled.  Sunday at approximately 10:30 a.m. - I will be at home while Lily's parents will be at the hospital.  A hospice nurse will arrive at my house with a bed and some equipment for her.  This set-up process will likely take about 90 mins and then Lily will be driven home by her parents.  Her mother will move into our upstairs bedroom.  The hospital bed will likely be in the center of our living room.

Weirdly, Lily's rambling, shaking and overall confusion has almost ceased to exist.  We have been told that due to the increase in her medication, her brain is no longer completely focused on fighting the cancer.  So, as she declines physically, she improves mentally.  What an unexpected paradox.

Here, we all were thinking Lily's confusion was from the cancer but instead it was a result of fighting the cancer.

Lily flipped-flopped on whether to keep fighting the cancer (despite her oncologist's opinion) or surrender the fight and go into palliative care. 

She ended up choosing the latter, thankfully.  I say thankfully because watching Lily endure the first round of chemo and radiation was so excruciating, I genuinely thought I could feel her pain, too.  Nothing like telekinetic or Spock-like, but something more akin to the visual and auditory sounds clashing and then being absorbed by me in empathetic way. 

I not only winced along during these episodes but I could feel pain in my chest. As if I was going to have a heart attack.

So, in preparation for Lily's return to our house, I decided to have "her girls" bathed and groomed (see picture above).

Of course, we didn't get off scot-free while at hospital today.  There was the uncomfortable talks with hospice coordinator about implementing a DNR, a designated person authorized to "pull the plug" if Lily goes into cardiac arrest but survives it without cognitive function, etc., etc., etc. All gruesome and disturbing scenarios.

There were more than a few times that either her mother, father or myself had to "step out of the room" as we didn't want break down in front of Lily.  

But we got it done.

After it was just Lily and I in her hospital room alone (with the constant heart monitor beeping and breaking the silence), Lily looked right at me in the eye and asked, "Why is this happening to me, honey?  What did I do wrong in my life?"

"You did nothing wrong." I said as my voice tightened. "It's genetics or god or an intelligent designer or whatever you want to call it.  And take comfort, that each one of us in this room love you more than anything.  And everyone of us is going to be in your exact same position, someday.  Actually, everyone of us on this planet will go through what you're going through. You are just lucky (or unlucky  - if you choose to view it that way) to know where and about when it'll happen."

"Yeah, two weeks, maybe," she said sobbing.

"Yeah", I said," sobbing back.

"I'm going to miss you so much [my name]," she said.

"Me too," I replied.

Final Act...

Well, the day has come. Her mother and I spoke to the oncologist who laid out the options. There are two of them. Option 1: begin chemo again in the hospital next week. Option 2: release Lily from the hospital in the next 24 hours or 36 hours, depending upon the hospitals' coordinator putting in place hospice care.

If Lily were to choose option one, the oncologist said there is about a 20% chance that it would reduce the tumor size and growth for an undetermined amount of months, anywhere from two months to six months. The problem with option 1 is that the treatment might be too hard on Lillys body to withstand it and therefore, excel it. And keep her in pain for weeks and weeks. And that's IF it's effective.

Option 2 would be hospice care at home with a life expectancy of maybe two weeks.

Lily is in a state of struggle, coupled with pain and other end of life consequences.

Her mother and I both believe Lily will choose option two, hospice. The oncologist, in fact, said that if Lily were his own sister, he would choose option 2.

This stems mainly from the fact that option 1 will be a painful struggle that is only going to have a "slim "chance of extending her life, at all.

So, I am going to head back to the hospital at 5 PM, to talk with Lily and listen more than anything about whatever choice she makes.

Lily was not in the room when the oncologist broke the news to her mother and myself, but he did explain that he went over the options with Lily prior to him visiting us.

It was at that time that Lily expressed that she wanted to be alone in her hospital room to digest everything that was said. In addition, her pain medication has now increased in order for her to have a meaningful discussion with us.

Her mom and my prediction is that Lily will choose hospice care as the pain of chemo was too difficult the first round. And the oncologist just agreed with her.

So, I am beginning to set up the house for that care as I type this update.

Two weeks to live? I can't even imagine what is running through Lilly's mind. But I will find out soon enough.

I've already alerted my employer that I will use the rest of my vacation time and then go on FMLA. Unfortunately, it might be just a week or two.

I'll update more when I am able.

Up at 2:39 am

I'm off work today, again. My boss though it'd be best if I were in the hospital again with Lily as some major decisions may likely be made today. Again. Namely, Lily was supposed to be well under chemo treatment a few days ago, which obviously didn't start. So, the cancer is still growing.

I went to the hospital last night. Late. Lily's mother and father were sitting silently in the room with her and no lights on.

I poked my head in and could see her eyes half open. Holding some flowers, I whispered "can you give me a few minutes alone with her?" They both nodded and left the room. The sound of the door closing was comforting.

It was just her and I. As it's always been. And should always continue. Something so normal like a deep hug that seems ages ago happened.

Lily recognized me but was very fidgety in an effort to get comfortable. Her eyes locked on mine and she started crying. I bent over to hug her and while she hugged me back she kept whispering, "I'm so sorry, Glen that I'm putting you through this. I'm so sorry...I'm so sorry," sobbing.

"We'll get through this," I lied with now my now quivering voice.

She pulled away slightly and said, " I don't understand why they won't let me come home with you?"

"It's your kidney, honey, the have to try and fix them first," I said.

"Maybe tomorrow?" she asked crying.

"Maybe tomorrow," I replied.

I then kissed her as her arms weakly fell from my shoulders.

Fuck, I thought again, as I left the hospital room and walked right past her parents.

Fuck fuck fuck!

Hospital Visit Cancelled and...

Lily's mom arrived pre-visiting hours (of course) and called me to say NOT to come. Lily wanted no visitors today. "I can't come?" WTF? Could this be her mom manipulating my visiting hours so Lily will be more mailable in choosing her house vs. our house, if/when that decision comes?

After hanging up, I became so furious at the possibility that I drove to hospital, regardless. Interestingly, my bother 's wife, Paula, called my cell as I was just entering the hospital to see Lily herself. I told Paula that I would have to call her back as we cells tend to lose coverage in the hospital. So, we agreed I'd call her back later.

The mother was standing in front of the doors of Lily's room speaking with two surgeons. I didn't even acknowledge them and barged into Lily's private room.

It appeared she was sleeping . I squeezed her hand and said everything's going to be okay. She was trying to pull the wool cap over eyes as she cried that "she felt so ugly" and as a result she wanted to be left alone. I kissed her on the cheek and said goodbye. (Just to comment of Lily's physical appearance - it has changed again, the drugs in her system have puffed out her cheeks, neck and arms. In addition, she recently had a rash breakout on her face.

All of which, which she could be related to a 100 different things. It seems the likely culprit are the steroids, which she is being weened off.

The positive news about the visit was that they did not find any lesions (cancer) in her brain. While Lily's mom was overjoyed, I was not. Lily is still peeing voluminous amounts of blood and Lily could be acting "off" due to the kidneys shutting down and her blood toxicity still rising.

That will be discussed later as Lily's mom did see on the in room patient's whiteboard "discuss hospice" written down, which Lily's mom asked them to erase so it's not the first thing Lily sees when she wakes up.

So, here we begin on that path I think as I drove home. Exhausted as I've been up since 1am, I called Paula back 4 times, left a long voicemail to have her call me back.

I collapsed into our bed for about three hours and checked my phone. I got text from my bothers phone. It was being written by his wife. My brother was in a serous motorcycle accident. I called Paula as soon as as I read that.

My brother swerved out of the way of an medium sized animal on his way to work, which put him in the hospital with a punctured lung, several broken ribs and a possible spine and shoulder injury that may require surgery. We'll know more later.

Stupid motorcycle, I've begged him to satisfy his death wish several other ways but to no avail.

My brother and my Lily are still in a holding patter when the rest of us try to hold onto our sanity.

Pre-hospital visit

Decided to take the girls for a drive. The older one loves hanging out the window and we think an air-buzz. Good for her, I always think. A natural buzz.

The younger in likes to lean against me, as I drive. Both cute but the empty seat is too hard to ignore.

Thank God....

For Netflix. When Lily was at home, I began a Dutch series on Netflix named "The Rain". I got through only one episode but it was looking really good. And the title seemed appropriate for my mood.

As Lily's illness progressed and I had to return to work (part-let-her-mother-feel-needed and part-escaping-my problems) I tended to download a (preferably) binge worthy tv show Lily wouldn't want to watch anyway (sci-fi, political, etc. show) that could occupy my mind in the lunchroom as I ate by myself for an hour or less.

I don't want to talk with anyone at work even though I get invited. I have friends already. Namely, those of you who've been invited to this website. I don't want anymore. At least at the moment, anyway.

The show is called "The Rain". It's a modern day thriller from Denmark. I watch all of these foreign shows in their native language despite Netflix offering an English dubbed version by default. The original language version does offer English subtitles but I enjoy hearing the original language. I kind of try to pick up a phrase or two if I binge quickly.

I used to do that when I lived in Japan and visited the Nederlands, South Korea, Russia, Germany and Africa (Afrikaans, specifically). I'll never learn enough to converse but I at least enjoy trying to pick up simple phrases. And who knows about my future? I may move internationally after this is all over. I have TEFL experience and I can renew my certificate online.

There was this one time Rhonda and I were in a cab in Japan where I was talking with the driver. Lily and I were together for nearly 20 years already at that point but she stated how impressed she was with me. I thought she was being sarcastic at my broken Japanese with Japanese apologies peppered in for my bad grammar to the driver. But I realized to Lily's ear it all sounded fluent.

Back to Netflix, the only bittersweet to "The Rain" is that its location has always been on Lily's bucket list. Denmark. She has long some distant relatives there she doesn't know but, I think, she would've attempted to visit at least one - unannounced. She liked to bring a smile to somewhat strangers. Whether it was a childhood neighbor who relocated to Big Bear or a cashier at Ralph's she knew from long ago.

Something, I would never do but would admire from a just few feet away.

Every time.

Like she did in that cab.

Up at 1:36am

I woke up crying. I can't remember why, so it stunned me a little bit. It hasn't happened for some time but here I am. Was it a bad dream? Was it a nice dream that became sad? Is it knowing she's in pain just 1/4 mike away from here?

I so desperately want to go to the hospital and just sit next to her. But really, I want her next to me. That's it. I know why I'm sobbing. As I left Lily and bent down to hug her, she hugged me tightly back and whispered "I just want come home".

I miss her breathing, her smell, her voice and her laugh.

The dogs sleep close to me, more now. And I know they miss her, too.

This pain is so intense.

Debating worse case scenario

Back at the hospital again. Lily is in and out of consciousness, although they loaded her up with Xanax the second I got in. Lily was lucid for about 20 minutes and then fell asleep, predictably.

Lily's mom made an overt gesture to me to go outside as she wanted "to talk". She put so much weight on the request, I knew that this couldn't be good.

She was talking in "theory" about Lily's "End of Life" decision to have hospice at our house and not at her Mom's house.

I said whatever Lily wants is what Lily gets. I could feel the fight in her Mom's desire to overrule Lily's decision and have hospice at her home. But she didn't quite go there. Yet.

I'm sure this will come to a head soon.

What did surprise me was Lily's parents' fear that I'll "abandon" them - their word choice not mine-, once Lily is gone. And by fear, I mean full sobbing fear that I won't leave them. And I keep thinking, you're retired? We visit about once a month? I am not sure whatever life holds for me post-Lily will be, but what do they consider abandoning them?

Who knows? I'm trying to deal with my own pain. I'm not going to take on anything additional, at the moment. Especially, when I haven't done anything other than be a loving partner to their daughter l.

Back to Lily, she is supposed to get a doctor visit either tonight or tomorrow morning regarding her brain MRI. Nobody knows when. Even though the hospital staff has all of our cell numbers, Lily's mom refuses to leave the hospital, even though Lily is in a deep sleep.

And I don't blame her. The mother-daughter bond is either almost or actual biblical. So, mom will stand vigil from 8am until about midnight tonight. If a doctor does in fact visit, I'll be called by cell but more than likely, Lily will be told tomorrow morning.

And after talking to my boss, he nearly ordered me to take the day off tomorrow, to be there when the news is delivered, which I was going to ask him for anyway.

So, tomorrow we shall see. Lily and I did have a few chuckles before she passed out. I won't repeat them here as I'll break down again, as I did exiting the hospital just now.

Ever single conversation I have with Lily is so goddamn bittersweet, I can barely breathe getting into my car.

Leaving hospital...for now.,..

After checking in with the front desk at admitting, getting the security badge, being told that Lily was in a private room, I quietly entered. I could see the bed-adjacent chair was empty. Where was the mother, I thought?

I walked a bit further and saw Lily all alone in the room in her bed. Her eyes were closed but I couldn't tell if she was asleep.

I whispered, "Honey?" and her eyes opened. She didn't smile, though. Uh oh, I thought.

Turns out I was right. Cindy soon entered the room with a coffee from the cafeteria and we walked outside into the hall do you have a private conversation. Cindy had been there since about 8 AM and said Lily was "on fire". Which I knew meant that she was jittery, talking a little nonsensically, upset with a tiny bit of anger, etc.

Back to the room, I asked Lily how she felt and she quietly said "Pain...Pain". She got up in bed and tried to reposition herself over and over again. Almost OCD'ish. She kept saying, "I wish I could just get comfortable". Not knowing how recently she had been medicated, I whispered that question to her mom. She said about 10 mins before I walked in.

So, there's nothing I could say about that. I awkwardly brought up an anecdote to Lily about how much we (2 dogs and myself) missed her last night but Lily didn't really respond. I then said that our little one farted. Twice! And that produced a laugh out of her.

So, my thought is "She's still in there. Somewhere."

Lily is scheduled for a brain MRI today to see if the cancer has spread there. What will they do if they find it? My guess, probably nothing. Other than put it down on the negative side of a two column ledger.

And that's where it stands. MRI and then the dreaded doctor visit later this afternoon as to what treatment course remains, if anything. What a horrible journey this is.

Here we go...

All I'm thinking is she alive or dead?

Tick Tock...

Just to start off with light-hearted stuff (as I need it, like this blog) I picked up Amazon’s new item “the Spot”.  Best Buy had it on sale Sunday for $109 withe $25 BB gift card included.  It’s probably the best bed side clock, I’ve ever owned. The #1 feature are the choices of the clock faces including font/style/colors/wallpapers/ and most importantly, its’ dim ability. From bright eye popping bright to total blackness. And the gradient in-between choices are not some clunky four fixed positions like 1,2,3 & 4. Instead, a smooth wheel on the side with the same functionality of, well, a dimmer switch for a dining room lamp. Infinite.

it also has the functionality of being an ideal replacement for a “I’ve fallen and can’t get up” gadget.  I tested it Sunday with Lily at home (which seems like a month ago, really). I said, just above an “inside voice”, “Amazon (pause) call mom at home”.  And bingo, The Spot’s clock face switched to a near copy of the iPhone’s “calling” screen ( of which I smell a lawsuit upcoming) and started ring her mom.  After, segregation answered, the now-speaker-phone had great voice quality-we all agreed.  It was just like a regular call.  And if mom wasn’t home, Lily could call 911 or any other number including your cells entire address book.  You contacts section links to your cell phone via Bluetooth.  The pairing takes 5 seconds. And it only has to be done once. Every time you enter you mr house, they automatically pair.

I’m off to the hospital this morning. I just got off of the phone with Lilly’s mom. Her mother stayed with Lily until about midnight, last night.  

She said that Lily was still “fired up “as when I had left her earlier. We are both slightly pleased at this new normal of Lily, but it is disturbing, as well, for obvious reasons.

I called into work to my very kind boss (whose a Christian) and left a message that I would be gone for the next couple of hours but might return home and actually try of work a little bit. The main reason is that Lily and I talked yesterday that today might be filled with a lot of tests, where Lily won’t even be in her room to visit. And since “idle time is the devils playground “adage still applies, work might be a desperate relief. I know this is likely to be far too optimistic, but I have to force myself to think like this just to survive. To keep my sanity.

Lily’s mom was going back to the hospital at about 8am. I said I would be there around 9am. Hopefully, a doctor or two have already given Lily an update.  So, I’m off.  

I’ll try to update you when I find out the game plan this morning.

Fucking hell, am I tired all of a sudden.  I thought I slept some what well. But I don’t think that I did.

Back Home....

Unsurprisingly, they've admitted Rhonda for at least until tomorrow. The attending physician in the ICU department, finally arrived. I kind of overheard him on the phone in this busy room (apparently Monday's are one of the busiest days for ERs), speaking to Lily's oncologist. I was pleased by this happy accident of overhearing him, as I now would respect his opinion entirely. And it wasn't good.

While we were waiting, Lily kind of fell asleep after they injecting her IV with pain killers. No big deal, I thought. Then she started seizing, slightly. Like major twitching.

Well, I was wrong. There's a concern now that the cancer has spread into her brain. They will MRI her brain, tomorrow. She's also incredibly anemic now, as well. So, there going to giver a blood transfusion, again.

When we asked about the kidney theory, they said the could conclude anything as the cancer on both her kidneys, have almost enveloped the organs, themselves, that they were unable to see anything in the kidney, at all.

Meanwhile, if you were to walk into Lily's room, she would be smiling, giggling and chatting meaningfully.

That's the weird part. I can talk to her like she's next to me in bed.

Like nothing has happened. But everything has..

I am staying home nearby as I think "hospice" is going to be discussed with us, tomorrow. I pray, too, that isn't going to happen, but you have to prepare yourself. You do not have choice, coincidentally.

Another crisis....

Well, we're are in the hospital again. It's 5:30 pm. Lily went home from the surgery this morning but then her oncologist called this afternoon. He was going over her blood work and found something alarming, akin to her kidneys shutting down.

Is it a blockage? Are the kidney tumors doing it? She just had another CT scan of her abdomen/kidneys. I think she'll be back in surgery again tonight from what I gather.

And I think she suffering from kidney toxicity as she is a bit delirious.

Surgery Over...

Lily was just rolled out of surgery. Her mom hasn't seen her yet but the surgeon came directly out into the hallway and unmasked himself to tell her mom the "everything went fine".

Mom asked if this surgery will have any positive affect on Lily's lower back pain and chest pain? He said "maybe" to the chest but "no" to the back, obviously. He offered to formally admit Lily to the hospital right now and they can roll her back to the O.R. and he can explore if it's just the kidney tumors causing the pain but decided against, once mom said Lily is scheduled for chemo tomorrow and that if she's admitted it'd probably delay that treatment.

They agreed. No further surgery for now. Start the chemo tomorrow. But he did warn that he'll likely need to do this surgery again in about 10 days in order to keep her breathing. The line between life and death is hanging by a thread, here.

The tumor on her lung is that aggressive and dangerous. Hopefully, the chemo will stunt it's growth (even eventually reduce it, hopefully, but that could take some significant time). How much time? Nobody knows.

So, the surgeon is already scheduling her next surgery in 10 days and he wants to schedule another one after that and then another one after that. In fact, keep doing them to keep her alive as the chemo treatment continues.

From my view, Lily's breathing at home has been getting worse - picture a runner after a long but fast sprint. Bending over to in order to keep semi-vertical but frantically trying to "catch" her breath. We all know that standing or lying down is more oxygen efficient but there's a huge pain factor involved that only bending over with her hands on her knees seems to relieve some of the pain.

When I see this happening (everyday, btw) I just think this is what "fighting for your life" looks like in the real world. There's nothing heroic about it. It's just misery.

And, selfishly, it's incredibly hard to watch. I can't assist and I can't help. I can only watch like a spectator.

Lily's all alone on this one.

And she knows it.

Mother’s Day Cancelled

Lily didn't feel well today, even just to visit her mom. Especially since she is going to be with her all day Monday (outpatient surgery day) and then Tuesday for 1st day of her 2nd round of chemo. I elected to deliver Lily's Mother's Day gifts in person as I had some errands to run.

One of which was to pick a new Keurig coffee machine at Best Buy as ours failed this morning. And Lily and I both have a lot of Starbuck's K-cups to burn through. BTW, I believe this whole Keurig racket is Polaroid Instacameras vs. the film cost, Inkjet printers vs. ink. costs, etc. all over again.

In the end, who gives a crap when you're are not confident that you'll see this Christmas.

So, I'm at Best Buy watching a 85" Sony Oled 4K HDR TV in a very relaxing Lazy Boy chair watching a tour of Prague and Moscow in 4K HDR.

Maybe you can see the world from your living room?

Mothers Day...uugghh

I guess everyone who loses their mother never looks forward to this day. And by "not looking forward" I don't mean it has some sort of weird ambience around it. It just no longer triggers any real sense of loss. My mother has been dead for over 20 years. It's sting has definitely softened. I guess, so much so when the day comes around, the past or whatever number of years it took to get to that level (5 years? 3 years? 6 years?), I really don't have a memory of that crossover.

I think it just becomes gradual. There's nothing ceremonial about it for me anymore. Like Kwanza.

OTOH, (On The Other Hand - for those not a regular reader of anything on the w's) I do have to actively participate in it due to Lily's mother and Lily's desire to honor her mother. Of which, I completely respect and encourage. Unfortunately, with that respect and encouragement comes the obligation of "your coming withe me?" asked by Lily to me over twenty years ago and ever since.

Back then, I did not want to. I wanted her to go alone and hang out with her mother. I really wanted to be alone in my apartment. Just to dwell in the thoughts of the loss my mother.

I met Lily in July the year my mother took her own life (which was 5 months earlier in February). So, I clearly had already gone through one Mother's Day, alone but I don't recall it at all.

Our remaining family were likely still in mourning and the day was just another day. But now as I type this, a memory has popped into my mind (which is a "funny thing" as one of the top neurosurgeons in the country told me a few times. A funny thing? That's the best euphemism he could come up with when I asked some pretty simple questions about my upcoming brain surgery? A guy whose has had probably more education than you me put together. He sounded like he was kicking off a Romper Room Lesson Plan for some retarded kids).

Anyway, I'll revisit that guy in some later post as I might be seeing him for a check up in the months ahead.

Back to Lily's mom, so the tradition began. I would join Lily with HER family and celebrate this corporate smelling "holiday". I would make the drive up from my apartment to Lily's mother's home (Lily hadn't moved out, yet, but was in escrow on her condo) and paint a smile on my face and pretend everything's "happy happy joy joy" - see the brilliant Ren & Stimpy show, which remains tragically underrated but near-genius art in the form of a cartoon.

We would either go out for the typical brunch or the mom herself would make one at her home. I didn't care. And twenty+ years now gone, I still don't.

But I have to endure this uncomfortable day, yet again. Only this one is going to be the worst. I just know it.

I painfully bought her some flowers last night at Ralph's. But I purchased an even more expensive one for Lily.

She is the mother of our two dogs. And as hackneyed as it sounds, they are her children. I even bought her a card and a gift card to Wendy's (her children love the square meat). Or we at least pretend they like it more. I'd be pretty defenseless if asked to provide any evidence of it.

I presented Lily with her Mother's Day last night as I wasn't sure we'd have a quiet home today because these small wear her out to the point of nearly passing out.

Lily loved the gifts. And it was a testy eyed producing moment, which I successfully held at bay, know this was going to be the last one.

And I think that's the exact reason why I am tense about today's celebration. That will be the elephant in the room. Lily's mom has been broken by this journey. And this day will be so bitter it will overtake any sweetness, I feel.

How could it not? A dying child saying "thank you" to her still living mother? It's nature upside down.

Oh for fuck's sake. This is going to be more horrible than I thought.

So I woke up at 1:05 am from a bad dream...

So, Lily had left the bed, I remembered, at some point earlier. The dogs must've followed but Dog 1 (our older one) always comes back down alone to sleep with me.

I hazily recall her weight jumping on the bed and filling Lily's spot and almost immediately snoring next to me.

Confusedly, I thought Lily was still in bed as I could hear her quietly talking in her sleep. As she has done the past few weeks, which always makes my thoughts turn dark. "The cancer has moved into her brain." Lily is never aware of these talks, btw.

Just minutes later, thinking I'm awake, I hear other whisper underneath Lily's talking. The whispering seems to becoming from the phone handset nearby ( it has a speaker phone built in).

It's a male voice but I cannot understand him. I turn to Lily mumbling and ask "are you hearing that?"

She doesn't respond l. I decide to speak into the handset to see if it's real or not by saying: "fuck you" as I knew that would stop anybody mid sentence or not.

And it did l. The male voice whispered the same thing back. "Shit," I thought. He could be listening to our whole conversation when Kily was in bed.

A bit panicked, I reach over to Lily to alert her to this eavesdropping, but she's not there, as I thought. Only Penny snoring.

I then really wake up by abruptly sitting up in the bed and turn on the tv for light. And right as rain, it's just Dog 1 and me in bed.

I stay awake and mull my thoughts over and figure out who was in the phone. It was the guy in the picture.

The lead character in "La Casa de Papel" aka "The Money Heist". The show on Netflix I've been watching when Lily isn't up for talking, due to her shortness of breath or mood. And that is more often than not. As in 80% if the time.

So, I put the show back and watch another episode in an attempt to replace my disturbing dream back into a tv show.

Big day....

I’m almost got into an car accident this morning.  Down there (see pic). That’s the Harbor Freeway.  The lanes closer to me are the n/b lanes (my lanes) and just out of frame, four lanes merge with three lanes, net resulting in five lanes.

This is the trickiest part of my drive. Anyway, with all of the merging, very frequently, two cars are trying to change into one lane that has an opening in between each car’s own lane.

Anyway, I’ve become pretty experienced (as we all have) at the feeling of the rythym of any LA freeway but others haven’t.  An accident could’ve occurred but with a little skill on my part, it was  avoided, with the exception of some angry honking by the other party and I imagine some yelling.

I did not have the feeling of “whew!” or “thank god!!” or even anger. I felt nothing.  Like a flea landing on my shoulder. It was inconsequential. The biggest result would’ve produced an insurance claim.  Just a claim.

Which is what ignited a fire yesterday that raged into the evening.  

A completely unnecessary fire.  I’ll describe the ashes:

1. Got voicemail from Lily’s oncologist on my cell at about 10am yesterday. Message stated her planned visit at 11:20 am same day was being cancelled because her insurance has denied further treatment of Lily’s illness and they needed a new/different insurance company to start billing.

2. A little worried and not wanting to burden Lily (which was a mistake in hindsight) I called Lily’s mom.

3. Lily’s mom went nuclear.  Yelling and screaming and then sobbing uncontrollably. It was more hurtful to me than I could’ve imagined.  I got looped into an being an object of her screaming.  After, I found myself panting and walking in circles at being the recipient of this rage. Which was at everything.  Including the world.  And a brief stop at me.

4. I told her mom to call the oncologist back, which took about 20min with me almost yelling this instruction about two dozen times before it resonated as I could get louder than her.

5. 30 mins later from mom, saying she called as I suggested and it was a simple clerical.

6. Mom apologized more than a few times to me but it didn’t affect me. I blankly responded each attempt  with a “No need” or “ok”.

Driving home last night I debated on whether or not to tell Lily about this event.  I knew she would be more hurt if she ever found out and I had lied to her if her mother brought it up.  And besides, my allegiance isn’t with mom.  Hardly, in fact.

Okay, done with that.

Lily eventually saw her oncologist, albeit in the late afternoon.  It was so late that she beat me home from my commute only by about 20 minuets.  Which I took as a good thing as everything would be fresh in her head.  Again, quick bullet points:

1) Lily will undergo the “lung scrub” of the tumor under a general anesthetic in the hospital on Monday.

2) It is supposed to be a “short” procedure (she couldn’t recall if she was advised what “short” meant). But it will be done on an outpatient basis.

3) Her chemo drugs have changed (why and to what are unknown).  Takeaway point here is that they will NOT make her fail fall out.  So her little stubble, that is present now, will continue to grow.

4) Chemo treatment will begin the day 
following the surgery (Tuesday May 15). The numbers of treatments is in flux.  They will be 21 or 22 days apart and I think they’ll review how many will be prescribed based on how she reacts to the first one.

5) I asked Lily if she is pessimistic or fearing the chemo as she had expressed earlier.  Her answer: she’s not that hopeful as to how helpful the chemo may be but she is NOT fearful.  Nothing could be as bad as the radiation was.  And, by chance, she’s telling me, if it’s horrible as it was the first time, she will stop it and go into hospice care. At home.

Her oncologist, in fact, underscored this by stating that he has two priorities in term of Lily’s treatment: 1) Her comfort is #1.  Period.  2) Extending her life as much he is able to is secondary. Period.

And that’s it.  

With that in mind, her pain prescriptions have been increased significantly.  Last night, she was downstairs when I came home which seems likes weeks ago that this has happened.  And that SHE wanted to have a talk, with me.  As you can imagine, it varied from some very routine topics but transitioned into some intense and bittersweet ones.

The next big day is Monday and then Tuesday.  

So we’ll see what happens...