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Many of you know me as SingleDad from my blog Disabled Daughter. For six years I blogged about my life as a single father with two severely disabled children. Pearlsky lived with me; David was in a residential school. I stopped blogging when life became difficult for reasons known by the followers of that blog. But here I am. No longer a single dad, and quickly becoming disabled myself.

I was diagnosed with stage 3 colorectal cancer on April 24, 2018. There have already been so many events that I want to blog about. Events with me, with Pearlsky, with Inanna, and more.

If you want to follow this blog, sign up on the right. The list is separate from SingleDad's. If you want to read from the beginning, start here.

And by the way, cancer sucks.

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

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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Better a semicolon than a full stop

Two weeks until surgery and yes, I am getting nervous. I am preparing by preparing and learning. In this post there will be some pictures that are hidden and you can choose to look at them. No, not pictures of me. At least not yet. They will be behind a click me thing that just makes them appear, it does not take you to a new page. Here is a test to show you a secret message:

Click here for the secret message

I have colon cancer. Cancer sucks.

I will also do that with more technical information. People have asked all sorts of questions about the protocol and surgery and I will answer some today, in this post.

The goal of the chemoradiation was primarily to shrink the tumor and kill cancer cells that were in the surrounding tissue. It has been found that for certain tumors doing chemotherapy along with radiation makes both of them more effective. I had this for six weeks.

To read a bit more technical information on it, click here

Chemoradiation therapy in the management of gastrointestinal malignancies.
McRee AJ1, Cowherd S, Wang AZ, Goldberg RM.
Abstract
Concurrent administration of chemotherapy and radiotherapy has been increasingly used in cancer treatment, leading to improvements in survival as well as quality of life. Currently, it is a feasible preference, often regarded as the standard therapeutic option, for many locally confined solid tumors, including anal, bladder, cervical, esophageal, gastric, head and neck, lung, pancreatic and rectal cancers. In patients with these tumors, combined modality therapy improves local tumor control and survival while, in some instances, obviating the need for surgical removal of the organ of origin. The scientific rationale for the use of chemoradiation derives from the preclinical and clinical observations of synergistic interactions between radiotherapy and chemotherapy. When chemotherapy and radiotherapy are administered together, the chemotherapeutic agents can sensitize the cancer cells to the effects of ionizing radiation, leading to increased tumor-killing effects within the radiotherapy field. This, in turn, can improve local control of the primary tumor and, in some cancers, render surgical resection unnecessary. In other cases, patients with tumors that were initially considered unresectable are able to undergo curative interventions after completing chemoradiation. The chemotherapy component can address any potential micrometastatic disease that, without therapy, leads to an increased risk of distant recurrence. A large body of evidence exists that supports the use of chemoradiotherapy in gastrointestinal cancers. In fact, one of the first tumor types in which the superior efficacy of chemoradiation was described was anal cancer. Since then, chemoradiotherapy has been explored in other gastrointestinal malignancies with superior outcomes when compared with either radiation or chemotherapy alone. This article aims to recapitulate the clinical evidence supporting the use of chemoradiotherapy in a variety of gastrointestinal tumor types.
From here.

Then there is the question as to why I am waiting for surgery? In the beginning (sounds so biblical) they tried surgery after chemoradiation but found that it was not working too well. Recently radiated tissue is very difficult to work with and the surgeons found that some tissue was just falling apart, suturing was difficult, etc. So they waited two weeks. That did not work out so well and they tried waiting four weeks. By the time they waited 12 weeks they determined that was too long. The wait is typically 8-10 weeks. During this time the chemo and radiation still have effects on the tumor and the body.

I have had side effects start several weeks after the chemoradiation ended. Dry skin primarily on my palms started about 2 or 3 weeks after therapy ended and my pubic hair actually started to thin about 4 weeks after. At this point I believe all side effects are done.

Let’s do a thirty second review from high school biology … here is something most of us have in common:

And of course the rectum exits at one’s butt.

I found a great resource with information about my upcoming surgery from the University of Tennessee Medical Center. I will be sharing parts of it in this post.

This picture is really freaky in that the black dot is in the original picture in that document. Why is that freaky? It is exactly where my cancer is … hmmmm … copyright infringement?

The dashed line shows what will be removed.  There is enough of the rectum remaining to still be usable! The stringy things you see that will be removed are lymph nodes and blood vessels. Once this is removed, the new end of the descending colon will be attached to the remaining part of the rectum (since there is room for the surgeon’s stapler).

Click here for a better, more realistic picture

I added the black dot and the grey oval; that oval encloses what needs to be removed.

Once the bad shit is removed and the remaining colon is connected to the remaining rectum the question becomes, how does the connection heal? It cannot be all that helpful for me to be sending my poop, feces, shit, etc. past the new connection all the time. So that area is bypassed.

The bypass happens in the small intestine. Before the contents of the small intestine can reach the large intestine (colon) they are diverted out of the body. The large intestine does many things (and I am sure not all are known) but one primary function is to absorb water and salts. When the small intestine is diverted out of the body, what comes out is much more watery and unformed that what we are used to leaving our body. This can cause dehydration since the colon is not absorbing this water before it is lost.

This diversion, for me, will be temporary. The small intestine is diverted out the wall of my abdomen and that creates a stoma. This happens in the part of the small intestine known as the ileum, hence I will have an ileostomy.

This is how it is done for a loop ileostomy:

Click here for more information on stomas (and pictures)

Two drawings of the surgery:

When you look at the actual stoma it is bright red/pink and moist because you are actually looking at the inside lining of the small intestine. And, yes, that is called the lumen!

Click for a picture of an actual stoma

And no, he did not pull a quarter out of his stoma … that is to show the size!

Depending on how my innerds are healing, I will have the stoma removed (all put back together) after about five weeks or five months. They don’t do that surgery during chemo which will start about five weeks after surgery.

And all of this will be complete, B”H, two weeks from right now.

Next post will talk about much more fun stuff, robotic surgery!

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“I love a natural look in pictures.” ~Marilyn Monroe

Several weeks ago, during the wonderful chemo-radiation, I asked one of the doctors (not the surgeon) for some more information about the surgery itself. He said that he was an awful artist but took pen to paper anyway …

If you know what to look for, this is actually a very good representation drawing. The tumor is at the intersection of the colon and the rectum (double circle near the bottom), the two “cut lines” for the surgeon show the foot long piece of colon to be removed, and the other drawing shows how the small intestine will be “tapped” into for the ileostomy. (I have been saying colostomy but in fact I will have an ileostomy … “a surgical operation in which a piece of the ileum is diverted to an artificial opening in the abdominal wall.” The name tells one the part of the overall intestine getting stomatized.)

Here is the picture I was given at the pre-op testing appointment yesterday. I like the doctor’s drawing better.

And of course I got my Home Ostomy Kit Book …

Yes, yes, I know, you want the to see my perfect belly. This is all about the “X” and its placement. As discussed in yesterday’s blog post, the nurse is tasked with finding the best placement for the stoma with both my quality of life and the mechanical workings of the stoma / bag system in mind. Once the placement was determined, she marked the “X” with a pen and covered it with a clear dressing.

So the next subject is the bag itself. These bags are clear and that is kind of rude as even I don’t particularly want to see the contents of my small intestine. There are lots of covers on the market, and searching led me to a small assortment that I find interesting …

And of course then there is my favorite:

All sorts of people do all sorts of things with said accessory:

What I don’t understand is why they don’t make manly covers … here is a mock up I just created, I bet I can sell a million …
What better cover to use when sitting around just shooting the shit with friends?

The takeaway is that I think no matter what, after surgery I very well may end up looking like either Bag Lady Mama:

or the lady in red …


I may be bummed that it is only temporary …

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

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

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

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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