Whose suffering?

As I drove into work this morning, just to stare at my monitors for the next 8 hours, all that keeps running through my head is Lily saying multiple times last night how sorry she is for putting me through this.  It's a very breathy apology and very quiet, which actually intensifies it, in some weird way.  She truly thinks I am having to go through something worse than her.  As she was sort of in my position when I was having my medical problems, she explained.

Of course, I protested and she easily agreed just to end the conversation.

So, I was thinking about her point commuting to work this morning.  Do spouses or significant others who are watching their wife/husband/partners die - are actually suffering more than the dying spouse?

In my 55 minute commute, I. couldn't make a decision. I didn't want to tell myself the old worn cliche' "It's a case by case analysis" because it really is not.  Lung cancer kills ~157K people each year, 55% men and 45% women.

So, there are likely a lot spouses/significant others out there going through what I am going through. Right now.  Like today.

So, I am leaning, only slightly and by that I mean by a hair, towards Lily's opinion.

I feel selfish saying that but what struck me last night during that conversation, was that Lily was at peace when we discussed it. Granted our new "norm" is her still coughing and coughing and coughing trying to spit up tumor fragments, which she then inspects by closely looking at her phlegm in a Kleenex every time, but her disposition is much more centered than mine.  By a lot.

It reminded me when I was in the pre-op room at the hospital having to wait for  my brain surgery.  Lily was at my side just outside of the O.R. and I could tell she had either just finished up crying or was about to.  I placed my hand on top of hers, which was gripping the cold chrome guardrail around my gurney, and telling her "I'll see you in about 30 seconds".

She barely chuckled at the reference to the time lapse you don't feel once under a general anesthesia.

But I kept apologizing and felt so bad for making her so upset.  Hmmm.

So, maybe I have made my decision, now that I re-read this.

Unfortunately, though, there will be no "guardrail" moment for us.

Up @ 2:02 am

I woke up because one of our dogs ( the older one) was clawing at my leg. To the point of pain on my leg. She does this when she wants back up on the bed. I looked over and found that Lily had left the bed after I fell asleep and the two dogs ALWAYS join her. The older one will often migrate back down to this bed and jump on an adjacent autumn to sort of ask permission to come up and join me (ie she can jump up on her own).

Of course, I let her up and she snuggled up right next to me (where Lily had been sleeping - probably because it was still warm from her body). Having to go take a piss now, I get up and walk towards my bed again and pause.

I just stand there looking at an empty bed with a dog in it and think: "Get used to this, buddy, you're going to be living alone like this a lot sooner than you ever planned". As I start to crumble at this thought, I decide to go to the kitchen and freshen my ice water.

I can't sleep. Besides there's an image in my head. Lily and I talked about death, again, shortly before she went to bed.

I asked her as she was involuntarily twitching and moaning (ie drifting off back to sleep) whether she still wanted "to fight this?" Lily, in a whispering voice, said "if I'm strong enough for chemo work again, yes, but if not, Yeah, I'll am done. And please don't hate me, honey, when that happens."

I could barely spit out the words "of course not" as she faded back to sleep.

My god, I know I keep saying it but this is the hardest fucking thing I've ever been through. Fuck walking like a cripple, fuck the searing white hot pain after my brain surgery, back surgery, confusion in my cognitive thinking, etc. This is it.

This moment. Tonight. Alone with my dog in this huge bed. It is the most pain I've ever felt.

Better....

Lily's mood has improved. She said the "radiation" pain has slightly lowered. It kept her in bed all day, though. The main culprit is not being ever able to get comfortable. Ever.

Lily said that while she cannot fall asleep lying in bed, she caught a series of catnaps sitting on the floor or the toilet or in the fetal position on the bedroom floor. She even passed out on a chaise outdoor chair we have on our shaded balcony off of the upstairs bedroom. She said it's a very weird sleep.

The thing I continue to notice is the constant talking in her sleep. She's never done that before. I like hearing it but at the same it scares the hell out of me.

During this journey, there has been constant worry when the cancer will spread to her brain. Chemo will only keep that from happening. For a while. Just a while. Fuck me. I think I'm done writing for the night.

I'm gonna attach a picture of Lucy I just took who is watching me get emotional as I type this. Ignorance is bliss.

Coming home...

Well, this has been my view coming home for the past few days.  An empty living room with all the lights off and zero sound.  BTW, I've changed my the subject from that impromptu acronym to "Lily".  She is the subject of this blog.  It sounds like she is asleep upstairs.

Small Update

Lily's mom just emailed me:

"It's almost 11:00, haven't heard from Lily.....starting to worry...don't want to call and wake her, but.....I'm worried.....not sure what to do....It seems like she takes her pain meds around 1:00pm at least she has the last 2 days....Thinking maybe that would be a good time to check on her...planning on just stopping over, not calling...maybe I'll be able to check without waking her...

This is a tough call.....

Dr said the radiation pain should get a little better everyday, and she should feeling better by the week-end....that's a lot of days to be struggling......I know she is miserable, and wants to be left alone.....but, what if she needs help......

I am starting to feel overwhelmed.....

You don't need to answer, I'm just venting.....I'll get back to you later....."

It's 12:30 pm now.  It's pretty hard to concentrate on my work after reading this.  But I've decided to keep compartmentalizing this stuff.  

Or at least try to.

Gloomy Morning

In some way this brings me a little happiness. Knowing I'm not the only one in a grayish mood.

Rough night

As I left off in my last post, Lily came out of the loft bedroom. She filled her water jug/cup she kept from the hospital and simply told me she was moving to the downstairs bedroom. I asked "How are feeling, honey?", and she said "Pain".

But then she said something nasty, to me. Her mom and I have been sharing the same experience. Ask a simple question and the get a biting accusation. It throws me so much, all I can do is remain silent. I feel she wants to pick a fight. Lily's mom handles it making it her cue to go home. Unfortunately, I can't. Inevitably, Lily apologized from the bedroom with her very weak voice. I said not to worry as I know the pain is driving her attitude (at least I hope). I told her I would come in the bedroom later (it was 6:30pm). Lily didn't say anything in response but about 1/2 hour later she announced that she was going back upstairs to our other bedroom, again.

She slept there the whole night. So, I saw Lily for about 5 minutes last night. I woke up at 4:00 am alone and I'm wondering if I should be sad or glad?

Is she preparing me for the inevitable? I think she is.

Hello, friend.  As I am only giving out this website address to people I know, "friend" keeps you anonymous as well as myself and the main person I am going to be updating about.  Lily would be "horrified "if they knew some of their stories were being shared with the world. Don't worry, I checked.  Even my Lily's mother was equally aghast at the idea of putting this out on the web.  Clearly, I disagree.  It's cathartic for me, first of all.  Secondly, as Lily gets sicker it gets more and more difficult to relay these updates verbally without breaking down. Here, I can hide.  Which I am sort craving, at the moment.

BTW, you shouldn't have to register to make a comment. The site may ask for an email, but only use a real one if you want.  I don't care if you make one up.

Well, today has not been good for Lily.   She called off her remaining radiation on Monday by breaking down in the parking lot with her mother at her side.  While she has gone through radiation and chemo before, as you know, the intensity in this episode is at something like 60x for radiation and I don't know about the chemo - but I recall hearing something like 3x.  Lily was scheduled for 15 but only completed 10.  As you know, there was that hospital emergency, which put in a 2-3 week delay in there, but regardless, Lily was ready to "pull the plug" on all treatment if she was forced more radiation.

Her mother, the radiologist and myself agreed with her, of course.  The radiologist reported this patient-decision to her oncologist, yesterday.  Thankfully, the oncologist called Lily last night and said: "don't worry about it, we can re-visit it later".  He has always put more weight on the chemo, so this wasn't terrible news to him.  To that point, Lily started peeing blood again on Monday, which speaks to the kidney tumors growing while radiology was solely focused on the one engorged lung.

Unfortunately, the pain has not decreased, by that much.  Lily is being promised by end of the week, it will.  I, unfortunately, am worried that 3-4 more days of this pain might be too much.  Lily no longer greets me when I get home from work but stays in bed.  Desperately trying to sleep so the pain will go away.  Well, it sounds like Lily is waking up now, so I will end this update for now.

Thank you for your prayers and thoughts.