Part 1- The Dream
"Sometimes, I know, I was rough"
At 4:30 am on Nov 9th 2012, I reported and checked in to the Ronald Reagan Hospital at UCLA. For liver re-section surgery. First stop- finance. Second stop- waiting in the hallway on the surgery floor outside the double doors which would lead to the pre-op rooms, once they opened the floor up. I stood in a line with other patients waiting to enter. There was a little bit of matter-of-fact chit chat among us. My recollection is all were cancer patients, and that there were at least a half a dozen of us in line. I remember talking to the man in front of me, he was going in for a colon re-section. Re-current colon cancer. With one exception, this was the only time I spoke with other patients there. After the surgeries it seemed the patients really kept to themselves.
In the pre-op room, the seasoned and portly nurse who started my IV told me that, “the prick of this needle is the most pain you are going to feel the whole time you are here at the Reagan Hospital”. I found that tremendously re-assuring. And I didn’t have any reason to doubt her, as this was a world-class institution. When I woke up from the surgery though, that little comment would add to the total and absolute astonishment I would feel, at the unimaginable amount of pain I found myself in.
I can recall becoming somewhat delirious and chatty in the post op area. I remember the nurse kind of scowling at me, when I told her the reason I was tapping on the side of the bed, was it was the only way I could communicate with the other prisoners.
After getting to the ninth floor where I’d spend the next week, every day I was roused out of bed and encouraged to walk around the halls of what was apparently the ‘cancer floor’. Using my IV stand to steady myself, and being careful not to catch or tangle the IV, the morphine spinal, urine catheter, abdominal-surgery drain tube, or any of the wires- I joined a parade of other patients dressed in gowns, pushing their IV stands down the hall. I saw people I had chatted with the morning we entered. But not a word was exchanged on these hall-walks. I did find out that the man who I spoke with about his colon cancer, that morning in the hall before surgery “wasn’t doing too well”. I did see him out on those walks. But I couldn’t bring myself to inquire how he was doing.
The one patient I did speak with was a man a couple of years younger than me. He was behind me on one of the hall walks. I recognized him as the patient I’d seen in the room next to mine. My neighbor, so to speak. As I pulled into my room, I waited by the door, for him to pass. I addressed him as he was walking into his room. We both stood in our respective doorways and talked for a minute.
Me: “Hey Neighbor. What are you in for?”
Neighbor: “Colon cancer”.
Neighbor: “How many staples did you get?”.
Me: “Seventeen… You?”.
Me: “Holy shit”.
That was about the extent of our interaction. A few weeks later I would see him in the waiting room at the Pfleger Liver Institute. At my follow up appointment. We’d chat for a minute. He was adamant in his advice to me that I learn about alkaline water. And that would be the last time I’d see him.
The following are letters I wrote after getting home. Full disclosure: I was on pain meds when I wrote them. Oxy. Not sure how that may have affected my writings at the time. Though they do seem to mirror my current theme, of looking for a silver lining. Now, my recollection is that I was never 'high' thru all this. Either in the hospital, or afterwards. But there are those who will dispute that assessment. My son, for instance, laughed when he heard me say 'I never felt high in the hospital'. He told me, "I watched your eyes roll up into your head, the moment after they gave you a shot". Ok, maybe I was a little buzzed.
So without further ado-
> From: Dr Decker
> Date: Fri, 16 Nov 2012 11:13:11 -0800
> To: Salty Rose
> > How are you?
> > Sent from my iPad
On Nov 16, 2012, at 6:49 PM, Salty> wrote:
Made it home yesterday. They took a "piece of birthday cake sized wedge" out of my liver, and some nodes. One of the nurses said I healed up faster than usual. I was in the hospital for a week. They took out my staples (seventeen of 'em) before I left. I have five prescriptions. The incision is pretty darn long. A lot longer than I thought it was going to be. It hurts a lot too. I've had 'cramps' in the incision area most of the week- one of my least favorite parts of the whole thing.
I'm sort of hunkered down now. The whole 'being in the hospital' experience was one thing. But getting home yesterday was another experience which I was kind of unprepared for... after being home for only an hour or two I felt all emotional and squirrel-y. I must have "let my guard down", at least that's my explanation to myself.
(My now-ex) told me later in the week "Now I can see what PTSD does to you". ...You know Larry, I've really made a concerted effort to manage PTSD's affect on my relationships. She hadn't seen it in action till after my surgery. She said I was "extremely paranoid, hyperactive, and angry".
I thought I had a reason to be a little wary. I woke up being rolled out of the OR with at least eight or nine people working on "getting me stabilized". I'm not shittin you- I was in excruciating, "10 out of 10" pain, and I was begging them to do something stop the pain. One of them said "we cannot give you anything until we get your blood-pressure down". I remember seeing the numbers on that little box which shows your vitals. I remember my emotion was total astonishment. It took them an extra hour to get me stabilized, and then onto the morphine.
Later that day they moved me to my room at the top floor. It was badass. Big room. Private. Ocean view. The cancer patients floor. The orderly who took me from post-op was preparing to hand me off to the floor/nurse. A box hooked up to my IV was beeping. I asked them what it meant, they said, "the battery in the morphine infuser is dead. We'll fix it after we move you from the gurney to the bed". I freaked out. I didn't want to repeat what had just happened in the post-op. I begged them not to move me until they got the battery's in that box changed out. They did it anyways. At that point I started crying. All I could think of at that point was "I'm stuck here for five more days?". I didn't sleep at all for the next two days. Oh yeah, I found out later on, that that morphine infuser can be "plugged in". What the fuck?
That nurse the first night never did get the morphine working and the first night was very painful. The second night the cramping started. It got to where I couldn't get in front of the pain. But by 9pm on the third day they got a combination of pain med and muscle relaxer to work. But by that time I was telling (my now-ex) to "help me keep an eye on them". I was convinced one of them must be a junkie and stealing the pain medication. Or something like that.
I wish I could tell you that I experienced some enlightenment during this experience. But it was in many ways for me an ugly, low-down, painful experience. I tried to remember the Prayer of St Francis. I figured there must be something I could still give. I could still just try to do everything they asked of me, with a smile, and for the most part I think I succeeded. I know that the folks who work on the cancer floor are constantly having to try to help people who are hurting. That's got to be an incredibly hard way to make a living. I did meet many dedicated, kind, skillful, and compassionate people. The bad ones were actually the exceptions to the rule.
Anyways, the week was filled with pain and wonder, fear and hope. I learned firsthand why Patience and Endurance are so important. For now I'm doing good.
Hope you are doing great! Thanks!
Subject: Re: ?
From: Dr Decker Date: Sat, 17 Nov 2012 10:53:38 -0800
To: Salty Rose
Wow. What a great letter. You sound good. Any word on the biopsies? I'm on retreat in San Rafael. I will send more later.
Sent from my iPhone
Glad you liked the letter. I was hoping you wouldn't mind if I expounded. I think writing it all down helps me understand it better.
The day I left the hospital, biopsies came back all 'no cancer'. I told my Doc during the conversation that my understanding was that this surgery was to help give me a better outcome. He told me, “no, this surgery was simply for completion of staging”. He said we'll meet 11-29-12 and discuss it in more detail, with oncology doctors.
Great news obviously. At the same time a little confusing. I have decided to, as much as I can, keep results of tests and stuff kind of quiet. Every time things change, or unfold, I'm greeted with a barrage of questions. And I apparently didn't even really know, what the surgery was for, going into it... (I don't mind telling you- your a doctor).
An example of the exasperating questions I get-
- Me: "I didn't leave the hospital today, because I was in too much pain".
- My Mom, excitedly: "What do you mean your in pain?? I thought the pills were working yesterday??".
It gets tiring explaining even simple stuff like this. Even to people who obviously care.
Have a great retreat!! Put in a good word for me!! Looking forward to hearing from you, but take your time, I'm not going anywhere for a while.
The Ronald Reagan Hospital, November, 2012
Part #2- "Looking Back"
"Looking back now, might be tough"
I'd been putting off writing this chapter.
In this chapter are the letters I wrote, in my correspondence with my Psychologist from the VA, following my liver resection surgery. They are a little personal. I wrote these letters in the immediate aftermath of that week in the Ronald Reagan Hospital at UCLA, in Westwood, California. It's funny, the word 'aftermath' while fitting, is a little misleading. To me the word 'after' indicates that the ordeal is 'over with'. But it wasn't. Because, while I may have made it home from the hospital, it wasn't 'over with'. Kind of like returning home from war. Some Veterans think that when they get home they'll have it made. But some may face challenges upon their return, that they couldn't have imagined, while they were longing for home. I think any cancer survivor will agree that life is certainly different during treatment, and continues to be different, afterwards. Most cancer survivors are familiar with the term "the new normal".
Anyways, the reasons I've been putting off writing this chapter are probably varied.
Besides the personal nature of it, it was a hard time. I mentioned to my friend Kevin on the phone this morning, that I had this story to write, and I told him I'd been putting it off for a couple of weeks. He mused that it was probably because it was a traumatizing experience that would be painful to re-live. That is certainly a possibility. But maybe not in the classic sense.
I think it has to do partly with the seemingly orderliness of my life, prior to diagnosis, now getting a little messy. It was at this point that it really started to go that way. I don't like looking at that. But that's part of the story.
So, looking back. There's this unease I have now with the parts between the letters. I tell myself that these are parts that people don't want to hear. So many stories of people surviving cancer are filled with tales of triumph over adversity. Of triumph over disease. Of folks that have the kind of intestinal fortitude to defeat the beast. And then, they go on, to rise to greatness. Maybe it's the soldier in me who thinks I should be basking in glory, in the 'aftermath'. But it doesn't feel that way, or look that way, to me. I can't sugar-coat it. My life changed dramatically. Besides losing the young man's devil-may-care invincibility, a relationship and career, were eventually casualties as well.
While so far I have survived, I see no glory in it.
Maybe, upon reflection, that's a good thing.
A good thing because on the other hand, my hope is that I did learn important lessons along the way. That would be the 'silver lining'. There's things that I needed to learn. Some things are more important than glory.
I spoke about some of those things in Cancer Letter's #1. And I've heard it said many times by the philosophers that there can be no growth without pain. And this was excruciating. So I can't help but imagine that there is a pretty good chance that there has been some growth. Did I really grow enough? In the area's of compassion, consideration of others feeling's, and gratitude? Only time will tell. And I am grateful for the time. Yes, I am grateful for that.
Salty Rose, 2020
The view from the 9th floor of the Ronald Reagan Hospital at UCLA, in Westwood, California.
Special mention must go to the medical professionals. And also to the workers who support them. What a job. I believe especially with the current world pandemic situation, at the very least a tip of the hat, a salute, a shout out, or a special mention in a blog, is warranted. At the very least. If you know one yourself, give them a smile. I'd say, "give them a hug"... but we're not really doing that yet. Right?
Part #3- "Remission"
This song has three movements- The Dream, Looking Back, and the guitar solo I call, Remission.
Sometimes, I know, I was rough
Sometimes, I didn't give you enough
Once upon a time, this was an honest plea
Now that’s all that it will ever be
Please don’t leave me
Please don’t go
I’d do anything to keep you
I’d do anything, you know
Please don’t go
Looking back now
Might be tough
We’ll forget this
This song was from a different part of my life
Hope you’ve moved on to better things and better times
Please don’t leave me
Please don’t go
I’d do anything to keep you
I’d do anything, you know
Please don’t go
"...it was for me a ugly, low-down, painful experience. I tried to remember..."
The Prayer Of St. Francis
Lord, make me an instrument of your peace
Where there is hatred, let me sow love
Where there is injury, pardon
Where there is doubt, faith
Where there is despair, hope
Where there is darkness, light
And where there is sadness, joy
O Divine Master, grant that I may
Not so much seek to be consoled as to console
To be understood, as to understand
To be loved, as to love
For it is in giving that we receive
And it's in pardoning that we are pardoned
And it's in dying that we are born to Eternal Life