Hospital Archives • Page 6 of 7 • Disabled Dad

“In times of great stress or adversity, it’s always best to keep busy, to plow your anger and your energy into something positive.” ~Lee Iacocca

August 24, 2018August 24, 2018

I woke up this morning thinking “Did I really end the last post by saying I had a ‘pink lace man-thong’?” and checked; yes I did say that. Then I wondered if there even is such an item. That’s why there is a thing called Google I guess. DO NOT CLICK ON THE FOLLOWING LINK if you are faint of heart … it is a link to Amazon (of course). THE LINK NOT TO CLICK because some things can not be unseen. Ever.

Anger is a tough issue. People tell me that I have a “right” to be angry now. Or that it is natural. I don’t think that I am particularly angry, at least not because of the cancer per se.

In 1989 I was lying on my bed watching TV and my then-wife came into the room. We had a “discussion” about something and I did get angry. I had the remote control in my hand and I threw it. Not at her, actually in a very different direction and it hit the ceiling near the wall across the room. That was just about 30 years ago, I remember it well. And I know the exact spot the remote hit.

and zoomed in …

These pictures were taken today. You may notice in the zoomed-in image on the right a faint outline around the marks … that is from painter’s tape placed over them because I will not allow them to be removed or covered. And the ceiling is actually white, so much for cell phone cameras.

The marks have lasted longer than the marriage did (and longer than the remote) but it was a good marriage (went on for 10 more years). That day was the last day I truly got angry. I look at the marks every so often to remind myself that anger is ugly, there are better ways.

I blogged about the cerberus II meeting of 16 days ago. Here is some other background that I don’t believe I have shared.

At the original cerberus meeting I asked if there was a chance that the surgeon would open me up, see that the cancer had spread and just close me up. He said:

No. Once you are on the table this tumor is coming out.

For whatever reason that made me feel ok. But, at a later date, when I was told I would get an MRI in August (the one from three weeks ago) I asked “why?” I was told that those results would tell us more about the tumor and if surgery was still a viable option. I don’t believe I shared that with anyone but it really fucked me up. This was before the start of chemo-radiation. I had the six weeks of chemo-radiation ahead of me, several weeks of “healing” and then that MRI to see if the cancer spread to the point of determining that surgery would not be an affective action. Every time that popped into my head was hell. I was very nervous about the CT and MRI scans and the results. I did not share my feelings with anyone, there was no point. I would not have felt better and they would most likely feel worse.

You can re-read the post about the cerberus II meeting but now you are aware that I was very tense about it. I was going to learn the result of the MRI and knew that there was a chance of hearing some very bad news. I arrived on time and they told me to sit and do nothing, the instructions for that day were bizarre and logistically impossible, etc. When they realized I was not happy, as I wrote, a nurse practitioner (NP) came in with someone else. It appeared that she was in some supervisory role but in my state I did not catch her name. Neither did Inanna who was sitting with me. The NP asked about some of the screwy things (my words) and photocopied the instructions I brought with me. She then asked me what else she could tell me.

I was angry. So much was screwed up and here I am, desperate to know results of my scans, it is past the time of the actual appointment to start, and I feel myself losing it. I glanced over at Inanna a couple of times and she was looking down. She has never seen me like this. Don’t get me wrong, I did not raise my voice, nor did I say anything inappropriate. Every filter in my brain was on DEFCON 1. Yet my anger was palpable, probably from 20 paces. I looked right in her eyes and all I could come up with as to what else she could tell me was the truth … “Did my cancer spread? Did the tumor shrink? Are we still having surgery?” I knew she would not answer any of these. She said she would go get the doctor.

I was livid. I was literally scared for my life. I knew NOTHING but I am sure she did. I know the doctors did. And there I sat.

As we waited I asked Inanna if I was out of line. She assured me I was not but that my anger was obvious.

It’s been thirty years since I was in that state. I wanted to throw something. I wanted to rip into the staff. I wanted to know how close I was to dying. All I wanted to know was what they knew.

A couple of days later I wanted to reach out to that nurse practitioner, but I did not know her name or even if that was really her position. I would have apologized or explained, I felt bad that I was in that state. Again, I was sure that I did nothing “wrong” yet I hoped to connect.

It didn’t happen. Until two days ago.

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“Any fact becomes important when it’s connected to another.” ~Umberto Eco

August 25, 2018August 25, 2018

Ah, connections.

One of my claims to fame is that I had a conversation with the great Umberto Eco (author of the title of this post) while we were using adjacent urinals. Why is that an important fact, as he mentions in the above quote? I was introduced to him by my first wife, she who is mentioned in the previous post. And that post, about anger, etc., connects to its previous post (that would be the previous previous post to this one) which discusses my primary doctor and medical directives that fail as medical directives.

Got it? Let’s connect.

(Interestingly I have another claim to fame that involves a urinal and Babe Ruth. I will see if I can work that in at another time.)

One of the hardest parts of this journey to ~~hell~~ ~~heaven~~ restored health is the seeming incompetence of the support staff at the hospital. The absolute hardest, or most infuriating part, is having my body written upon without notice, permission or warning, but that will be saved for another time.

I do believe the support staff cares for the most part. By support staff I am referring to those who interact with patients and are not doctors. They may be nurses, technicians, patient relations, etc. Many seem to be good, caring people. And yes, many are competent and some are fantastic. Others want me to lie on a bathroom floor.

After Wednesday’s appointment with my primary doctor he wrote an email to the surgical staff that said I had questions about the directions for the pre-operation preparation. I don’t know if he admitted that he too had the same questions.

Thursday I was simply minding my own business, cleaning out an old office, and my cell phone rings. I notice it is from the hospital and, of course my first thought is “what the fuck do they want now?”

Hello, this is Nurse Athena and I understand you have questions about the pre-op preparation.

My first responses were filtered out by 50+ years of social training. “Yes, do you have instructions that make any fucking sense or are even possible within the laws of physics, time, and space?” was quickly deemed inappropriate. Valid, yes, appropriate, not so much.

Yes, basically they don’t make sense to me.

We had a good conversation, she was obviously familiar with the issues. She mentioned that she just changed her position and was working to modify these types of issues. She was also obviously familiar with my issues surrounding the cerberus II appointment since it was referred to once or twice.

Did we meet at that appointment?

Yes, I am the nurse practitioner who spoke with you about some of the issues.

Holy crap! This is the woman I wanted to contact afterwards but did not know her name, the one I told you about in yesterday’s post. A connection!

To be totally honest (hell, you knew it hurt when I ejaculated (which is no longer true) so I should not hesitate now with honesty) the conversation up to that point seemed a bit tense to me. I sensed something on her end, but not knowing who she was, and not knowing her at all, I knew I could not read too much into that. I am also used to getting calls from lawyers and school district administrators who are not sure how I will react and are a bit guarded. Maybe that was it, maybe she knew I was a very unhappy ~~prick~~ patient. The moment I learned who she was I understood what her first impression of me must have been. Again, I was livid that day. I kept it all under control but it was not hidden. She could not have any idea what I would be like on this phone call.

The conversation quickly took a turn. I apologized; she told me she totally understands where I was coming from. She said she has since learned more (when we first met, she had no idea of any of my trials and tribulations) about my experiences and why I was in the state I was in. I told her I wanted to reach out to her afterwards but neither Inanna nor I remembered her name or even that she was a nurse practitioner. Introductions don’t stick when your brain is melting down.

Turns out that we were both affected by our interaction and both bothered by it for a few days. I felt bad that I was so angry, whether or not it was justified. She felt bad for the same reason, it truly bothered her that one of “her” (my word) colorectal patients had reasons to be so angry and, in fact, was so angered. We commented that we both have great capacities for empathy (which, to be honest (again) I feel is to a fault (of mine), but that is another issue).

She assured me that I would be getting new paperwork that she is working on before my surgery and it would be properly vetted.

Yeah, that’s when I said it …

I would be glad to look at it before you finalize it if that would help.

I told her that I designed and implemented international trainings for Intel and Motorola, I give trainings and talks to school districts, have been a professor, etc.

That was Thursday afternoon. By end of day Friday I had already looked at two of their re-worked documents and put together a sample presentation to give them the idea of using several types of media to convey the important points.

In one of her emails to me (many going back and forth) she wrote:

I like the the word “enhancements” (not criticisms) because it highlights our collaboration on this project.

So there you have it. Connections. Connections among the last three posts. Connections with famous people and urinals, one at the urging of my first wife. But more important at the moment, a connection and a collaboration between an empathetic, intelligent, compassionate, and driven nurse practitioner and a cranky, empathetic, experienced, engineer / advocate / curmudgeon with a cancerous tumor up his ass.

Who’d a thunk it?

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“If I’m not back in five minutes… just wait longer.” ~Ace Ventura

August 26, 2018

Before I get to the actual post, I want to make something clear. This blog is anonymous because I don’t want to hesitate to say things and, it turns out, I don’t want to besmirch others. I have been very outspoken here about the hospital and its faults. I am a true believer in not bitching about something if you don’t do anything about it. For instance, don’t complain about a headache until you discover the aspirin or Tylenol does not work. To be clear, the hospital has been told about this blog and notified that it is their hospital. Patient relations has read the blog, several doctors know about it, and I found out today several members of the board have been told about it. So if I repeat a complaint, it is not that I am just complaining, inherent in the mention of the issues is the fact that the issue is known to the hospital and yet it persists.

I got a call last week from the hospital, a nurse asking to speak to “Jessica” someone. I said “There is no Jessica here, but I am a patient.” She checked her computer and mumbled something about the screen scrolling after she dialed, found my name and then continued (after a mumbled apology).

This is about your pre-admission appointment next week. If we go through some questions it will shorten the appointment, do you have some time now?

I said yes and she went through a standard questionare about history, medications, etc. Then she “confirmed” my appointment for next week.

I was told that the pre-admission appointment would be only by telephone.

No. We don’t do that.

I was told at the cerberus II appointment that the pre-admission stuff would be via telephone only. I can prove it, I have it in writing:

This morning I got an email telling me to check the patient portal about an upcoming appointment. Oh joy, my favorite web site. So today, August 26, 2018 I bring it up.

WHOA … wait a freaking minute. What is that on the upper right? I have the “#2 killer” … oh my god, I forgot that I may die. Thank you patient portal!

And my nurse practitioner is out until August 12. Good to know even if that was over a week ago and she is back. But then Dr. Pye is out until 2027. Still. Why is there not a canned “vacation notice” that the computer automatically keeps track of the end date, verifies it, and removes the message as appropriate? Nah, too easy.

The portal says I have a 10 AM appointment with the “wound/ostomy nurse” … a scary title. I am told that she will work with me to find a spot for the ostomy … I pick her belly, not mine. They say the appointment will be 45 – 60 minutes. I then do nothing for over an hour and have the “pat-preadmission testing” appointment.

The portal also tells me this:

If, in fact, I did not have the nurse appointment at 10 AM, I would be driving into the big city for a five minute appointment? Parking alone will cost me $10 no matter what. This is insane.

All I can say is that this better be a very well-used, important five minutes and not a waste of my time, or theirs. And if the nurse hands me an enema, I am not sure that colorectal cancer will still be the number 2 killer …

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“I must govern the clock, not be governed by it.” ~Golda Meir

August 28, 2018August 28, 2018

I had two appointments today, the wound/ostomy nurse and the pre-admission testing.

I decided that I was not going to ask questions if I knew I could get the answer elsewhere. I was just going to smile no matter what. I am so beat down by this place, it is a survival strategy.

The wound/ostomy nurse appointment was for 10. I arrived at 9:45 in case I had to squeeze in an enema … you never know. I checked in, sat down and waited. At 10:15 I was craving coffee so I figured I would see how much of a delay there was. I walked up to the desk and simply said:

Do you know what time I may be called in?

The woman responded:

She may be running late.

May? She may be running late?

According to that clock on the wall it is determined that in fact she is running late, that’s not the issue. Do you know when I may be called in?

She made a phone call and no, I did not have time to get coffee.

A very nice woman comes to get me, she is the nurse and apologizes for the delay. I smile and say “no problem.” I take her card and after her name it says “RN, BSN, CWOCN, Certified Wound, Ostomy and Continence Nurse” and I am a bit impressed even though I have no idea what some of that means.

She started by telling me that she will talk to me as she talks to everyone. Yeah, I got that message loud and clear. That’s fine, I will smile and listen. She then taught me that the small intestine is sometimes called the small bowel, and she wrote this down for me. Then she wrote down that the large intestine is the same as the large bowel and that is also called the colon. She literally wrote this down for me.

She had a great picture of what the surgery will do, but that is the only thing she showed me that was not part of my packet to go home. I really don’t understand why they would leave that out, but I did ask (yes, breaking my own rule) if I could have a photocopy of the paper she put away in her drawer. She did make a copy.

During her talk she used vocabulary all over the map. She taught me the words intestine and bowel yet used the word lumen three times and even in context I have no fucking idea what lumen means. I thought I knew what edema is, but in its context I am not sure. No, I did not ask, she knew her presentation, and since she is using low-level vocabulary (what ‘I will talk to you as I talk to everyone’ is code for) I am not going to show my stupidity. I am sure every patient in the clinic is familiar with their lumen. The whole thing started to make me bilious. And yes, that is another word she used and no, I had no fucking idea what bilious meant. Every time she said a word I did not know, I wrote it down.

Why they just don’t make a 15 minute video that explains all this that they can very carefully vet so it is understandable is beyond me. They can show it with the nurse sitting right there and all this goes away. But I digress … a bad habit of mine.

She had a show and tell with bags and stuff, I will share that in my next post.

She then checked out my belly … mentioning that it was very nice (medically) and noticing that I am somewhat hairy so I should use my electric razor in the area of the ostomy. Ok, no problem. She looked at me sitting, lying down on my back and right side, saw how high (or low) I wear my pants and now “X” marks the spot. Pictures of my very nice belly and “X” coming soon.

I left her at 11:10 and I had a 5-minute appointment with pre-admission testing at noon. Remember, this is the one I was told would be done over the phone, but nooooo …

I went to the cafeteria on my way, had a portobello stew thing over whole wheat colored pasta for $4.95. Actually it was pretty good. Then onto pre-admission testing.

The appointment lasted 7-minutes. It consisted of 6-minutes of questions that could have been asked over the phone and the nurse looking in my throat. I will need to be intubated during surgery (breathing tube in my throat) and she needed to see if I have an appropriate throat, sans edema of the lumen.

Then I went home, curled in a fetal position, and cried.

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“Just as courage imperils life, fear protects it.” ~Leonardo da Vinci

August 31, 2018September 1, 2018

First, a follow-up to the previous post. I found a great video that shows, via animation, all about the ileostomy. There are no disturbing true-life images! It was written for patients with irritable bowel disease (IBD) since they also often need an ileostomy but all the information is the same.

Now the question is, how the hell are they going to get the cancer out of me? As far as I am concerned, since the doctor can feel the tumor with his finger in my butt, why don’t they just take it out that way? I don’t know, but truthfully, I don’t want to know.

In the past, a surgeon would cut open my abdomen, through skin, muscle, and yuck; retractors would hold the foot long incision open, and they would dig around, take out part of my colon, etc. That has now gone the way of leeches I guess (although leeches still have a place in medicine) and the surgery is done laparoscopically.

This shows the difference in surgical openings:

Click here to see an actual photographic comparison

“Open and laparoscopic abdominal incisions after urgent total abdominal colectomy for CUC. Left panel: laparotomy with staples; right panel: laparoscopic subtotal colectomy with one 12-cm port site hidden in the diverting stoma, three 5-mm suprapubic, and 1 left lower quadrant ports are imperceptible. Left panel courtesy of Holubar; Right panel courtesy of Dozois, May Clinic, Rochester.” From here.

Laparoscopic surgery, also called minimally invasive surgery (MIS), bandaid surgery, or keyhole surgery, is a modern surgical technique in which operations are performed through small incisions (usually 0.5–1.5 cm) elsewhere in the body.

There are a number of advantages to the patient with laparoscopic surgery versus the more common, open procedure. Pain and hemorrhaging are reduced due to smaller incisions and recovery times are shorter. The key element in laparoscopic surgery is the use of a laparoscope, a long fiber optic cable system which allows viewing of the affected area by snaking the cable from a more distant, but more easily accessible location.

Specific surgical instruments used in a laparoscopic surgery include: forceps, scissors, probes, dissectors, hooks, retractors and more.

From Wikipedia

And yes, my uterus is much smaller than the one in that illustration.

So they cut a slit, put in a tube, and blow some carbon dioxide in. Yes, so many snide remarks being filtered right now.

Then a few more slits, one has a camera, one a stapler or retractor or something, another a type of knife, etc. Several people would be controlling the instruments, there would be a monitor or two showing the inside view, and the surgeon running the show. At the end of surgery they will attempt to suck out all the gas, any left over may cause shoulder discomfort for a couple of days after surgery. (Yep, it ‘tickles’ the bottom of the diaphragm and you have referred pain. The body is so fucked up.)

Click for a photo of a patient with said instruments

And then came da Vinci. This is the name of a surgical robot that aids in the surgery. da Vinci cannot and does not do surgery on its own, it is not that kind of robot. What it does do is control the instruments under the direction of the surgeon. The surgeon has complete control at all times. The robot filters out any hand tremors, magnifies the motions as desired, etc.

This is a great video explaining it all. There is about 1 second of insides near the beginning that does not really look like anything and should not typically be objectionable!

Click for an even better demo of the machine, but a good amount of internal body views!

And, if you really are a sicko, here is the entire surgery I am having from the point of view of the camera that will be in my belly …

Click here at your own risk

da Vinci Robot Assisted Low Anterior Resection with Diverting Loop Ileostomy

And if you are wondering how they get a foot of colon, with tumor, out of me?

Click here for a screenshot of how …

And now I must admit, I pine for the good old days, the days of my childhood, those days when surgery was done by the neighborhood barber, the days of yore.

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Don’t f–k up with Mr. Smith’s son

September 5, 2018

When my son David went to live in a residential facility he had a rough few months. There were many errors in his care, one or two of them were major. All this, and he was at one of the best facilities available. Needless to say I was rather vocal and dealing with the top level administration there.

Things were then quiet for a few months and on a visit I was talking with one of those administrators. I asked what changed … with a wink he said:

We put a sign over his bed that said ‘Don’t fuck up with Mr. Smith’s son’

As I am sure you remember, a bit ago I got an email addressed to “Mary” and I assured you my name is not Mary. Maybe there is something about the letter ‘M’ but my name is also not Michael. Really. My name is neither Mary nor Michael.

Today, September 5, 2018, I received an email. Here is a screen shot, simply redacting identifying information. I did not need to redact my name because, alas, it is not there.

All good information. I hope Michael knows that he has appointments on August 28, eight days ago.

I then got another email about 5 minutes later, identical other than it had the correct salutation, and this was followed by a phone apology about 90 minutes later.

Oh, the surgery prep instructions that were attached, simply a photocopy of these.

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