One thing I have learned as a special education advocate is the importance of structure and consistency when it comes to the lives of those with special needs. Pearlsky and David show this need as well. Transitions are dreaded, whether it is going from one class to another, from the school year to the summer, from one grade to another, to a different school, or graduation. Change throws us off. Structure and consistency protect us.

Adults, from ‘typical’ to whack-a-doodle, also rely on consistency.

Would you be comfortable showing up for your six month dental cleaning and there is a new hygienist? How about going to get your hair done, and your hair stylist is not there and someone unknown will cut your hair? Do you prefer to go to a random mechanic every time you need one or do you go to the one you have grown to trust?

Everyday I walk up to someone sitting in front of two computer consoles who asks my name and birth date and has me confirm that the picture on one console is of me. I walk around the wall into a room with a rather large machine and that person, and one or two others, watch as I drop my pants and lie on the table. Then one of them, I never know which, lowers my skivvies, and two of them shift my position around; it’s easier to move the target (me) than the gun (giant radiation machine).

Save for Kay, they are often different, new (to me) people. Kay has been doing this for 20 years, she lies about her age (there is no way she is over her early 40’s), has a smile, confidence in her job, professional demeanor, and makes it feel ok. She has been there for 9 out of 10 of my sessions. I have no issue with whatever part of the routine she is doing. I cannot explain how unsettling it is that all the others just come and go. The same team each day would make a significant difference.

This isn’t a haircut or teeth cleaning. This is a very personal, humbling activity that includes the aiming of a gazillion megawatt beam of radiation. This concerns life and death, literally. Mine.

When it is two younger female technicians (and I do not disparage them by mentioning female because in the context, that matters) (and although I say younger, they may very well be fully trained, eminently competent, but they are not very experienced) and they have much difficulty getting me in position, it would have meant the world to me to see a familiar face … how dare Kay have a day off. I was disappointed in myself and how much it bothered me. Why did I not leave and come back when others I trusted were there? Oh yeah, can’t do that. It will just be other new people.

There are many great people in this hospital. Many who have sympathy, but few, if any, with empathy. They just don’t see what they do through the eyes of the patient. Is it really necessary to continually change the technicians? I am on the same machine, at the same time, every day.

There is a young woman who is always at the front desk in scrubs and on a computer. I have no idea what she does, who she is, etc. She is right next to the device where I scan my card when I come in. Most days she looks up and gives me a smile. In any other setting I would know her name, and schmooze for a minute or two. I don’t here, I keep to myself and just get through it. As I was leaving yesterday she looked up at me and said “have a nice weekend.” It was the first time I heard her voice, but not the first time our eyes met. I really wanted to tell her how much that meant to me, but I didn’t, I just wanted to go home. This all sucks, but without Kay or the mystery (but consistent) woman it would suck much more.

Here you can see yesterday’s scan, and yes, I shaved my beard. 😉

Mondays are chemo-appointment day. They do blood work, change the batteries in the pump, give me a full week of poison 5-FU for the pump to pump, replace the catheter from the pump to my port, I see the doctor and nurse practitioner, and then go on to radiation to get intimate with TrueBeam, my gazillion megawatt girlfriend.

I arrive at 8:15 AM for my 8:30 appointment. I am scheduled to first see the doctor and the NP. At check-in I am sent to the treatment area, not sure why and I don’t want to miss the doctor. Although I tell them about the schedule, they take my blood pressure, weight and height (I guess they worry my height will change weekly … I am more worried about my radiated length). Then I sit in the comfy chair.

One nurse comes by to take my blood from the port … but my catheter and pump are still attached. Then she gets in a discussion with another nurse as to why they are only doing a basic Complete Blood Count. At this point my chemo nurse (and one day there will be a very long post about her) comes in and says to me “Didn’t we decide to take your blood work from your arm?” to which I answer “You did, yes, but no one is asking me anything.” Then a third nurse decides to take my blood and asks why they don’t just do a finger stick. I repeat that I am to see the doctor at 8:30. It is 8:40 and I don’t really give a shit how they take my blood. Or what they need to test for. Obviously they are not sure. But no worries, I am the one with a fucking cancerous tumor in my colon.

I go back to the waiting room and then get called in. I have not seen the nurse practitioner for a few weeks, I like her, and it is great to see her today. She then tells me the doctor cannot see me, he was called to another part of the hospital. I just rolled my eyes and told her that I was already very aggravated, this does not help. I spend a bit venting to her; she seemed surprised at some of what I was telling her. I told her about the friendly enema situation, about the random techs, the apparent complete lack of communication among the staff (blood from port? arm? finger? CBC? full chemistry?) and how although sympathy abounds there are no hints at empathy. We discuss my meds, my mood, my stool, my ejaculations, my sun worshiping, my itching, etc. … you know, all the topics one discusses on a first date. She takes copious notes (or doodles, I could not see). I actually like her a lot, I trust her opinions and knowledge, and she does show empathy. And humanity. I am still perturbed that I had to leave her with some questions to ask the doctor, who, did I mention, could not make the appointment?

I go back to the comfy treatment room to have the catheter replaced, etc. I have been dealing with itching around the site for a while. Not over the port itself, but more under the tape. The port area must stay covered to 1) hold in the catheter and 2) keep the area clean and dry. I really don’t want an infection around the needle.

Did I say “needle”? Here are two views of the same type of port, the device under my skin. And here is the catheter and needle. You can see the needle within the plastic tube/sheath. It looks rather long to me.

No one is sure what to try to stop the itching I am having, so they call in the big guns. Her card says “RN, BSN, VA-BC” and “Parenteral / Enteral and Venous Access Consultant, Nurse Coordinator CVL Service, Patient Care Services.” She is the self-proclaimed “Port Authority.”

At that point I had my shirt off and she was standing in front of me staring at the area. Not saying anything, not touching, just studying it.

Now I know how women feel when someone is starring at their chest. My eyes are up here.

She smiled and kept studying. There was a short consultation with my chemo nurse and then a plan. The big question is what is causing the itching. Is it the tape, the Tegaderm (or newer fancy-shmancy IV Clear), the skin cleaner, the skin protectant, or is it all in my head? The new covering tries to avoid the area that itches, can you find it?

Then it is off to radiation where they have a bit of an issue positioning me again, but finally I am irradiated and I get to go home. Irritated and irradiated, three and a half hours later.

Eleven radiations down, seventeen to go.
Twenty-four more days of chemo.

And yes, my nuts still hurt.

[Spoiler alert: bad words contained within]

Germs are bad, right? We all know that. This sterile thing is important. We like clean, we are in a hospital.

As you know, there are some skin issues around my port so the covering gets changed more than weekly. That is fine. I recently was under the care of a nurse who is not my chemo nurse, but she does have a special title and loads of initials after her name (and no, not Port Authority).

Each nurse has their own little rituals around doing this in as sterile a way as possible. Generally they cover the area around the port with a clean blue cloth like thing. On a tray they lay out a sterile covering and on that is the kit with the sterile dressings, tape, etc. The kit is opened and the nurse dons sterile gloves and begins. First a swab is used on my skin …

And then their pager goes off. Ok, that is not an official part of the ritual but in this particular case, her pager went off. Got the picture? And she reflexively reached for her pager and checked it. Sort of like this:

That is NOT the actual nurse at the actual time. It is a picture found on the internet, and the closest I can find to the real life incident. Close, but not the same.

Quiz time … why is this picture not the same as what happened? In other words, what is this not showing?

In real life, THE NURSE HAD HER FUCKING GLOVES ON.

That would not be a problem if she then removed them, put on new ones, and continued. But as Mr. Bill says …

She did not change gloves. Keep that thought.

One study from the National Institutes of Health (NIH) says this about “orthopedic attending and resident cell phones” …

Of fifty-three cell phones, 83% (forty-four cell phones) had pathogenic [disease causing] bacteria at initial testing, 8% (four cell phones) had pathogenic bacteria after disinfection, and 75% (forty cell phones) had pathogenic bacteria one week later. The mean result (and standard deviation) at initial testing was 3488 ± 2998 relative light units, which reduced after disinfection to 200 ± 123 relative light units, indicating a cleaned surface, but increased one week later to 1825 ± 1699 relative light units, indicating a poorly cleaned surface.

There are many studies such as this. Yes, I know a pager is not a cell phone, but close enough.

We also need to note that it was a reflex on the part of the nurse to look at her pager. I saw what happened, the pager beeped and she instinctively put down the swab, reached down and unlatched the pager, then used both hands to interact with it. She has been doing this for many years. And I have no doubt (although no proof) that she does this wherever she is, in the bathroom, eating a meal, etc. She then snapped it back in its holster, picked up the swab and continued to change my dressing.

I know what you are thinking.

So, Mr. Big-Shot-Advocate-Single-Dad, why did you not say something?

I have not lost my filters yet. My brain was yelling “Are you fucking kidding me?!” but the filters kicked in. Then I reworked it to “What the hell are you thinking? I did not know that KMart sells nursing degrees” but the auxiliary filter kicked in. Then I figured that the cancer will probably kill me anyway, so what are a few germs between friends?

I will soon post more on why I did not say anything, and yes, I was wrong not to, but alas, I did not.

She continued with changing the dressing never realizing that she totally messed up. Literally. Putting my health in danger. Don’t forget that my immune system is currently suppressed.

When my regular chemo-nurse changes the dressing, I am not allowed to look at the area because she does not want me breathing on it for fear of contamination. 

I don’t have a stay-put option, you fuck up and I die.

As per my weekday ritual, I empty my bladder at 11:00 and then start drinking to fill it up again. It usually kind of works to have a full bladder for my 1:15 appointment with Truebeam, the radiology automaton.

I arrive at 1:05 with a full bladder to find a sign that says “All appointments are running 30 minutes late.” Well that pissed me off, so to speak. My choice was to go relieve myself and start again (causing my appointment to be even later) or hang in there. So I paced a bit, distracted myself and did ok. Kay finally came out to get me.

I walk up to the computer control desk area, tell them my name and birth date, verify that the picture on the monitor is me, and go into the room with one plan: get on the table, get a gazillion rads of radiation throughout my pelvic girdle, and be on a toilet within eight minutes.

There is an older woman in the room, I don’t know who she is, and I start to get on the table.

You can’t get on like that.

What the fuck? Who is this woman and what is her problem? Does she even work here? Does she have a name? A clue?

You need to remove your pump, you can’t get on with your belt like that. You need to lower your pants.

I stood there dumbfounded, staring at her. But alas, dumbfounded for about five seconds. Unfortunately my filters kicked in.

I’ve been doing this for 22 days, I am getting on the damn table.

And I did as usual. Lowering my pants, etc. as always, once I am on the table. Then Kay came in. They positioned me and for some reason there was a problem with the position and the pre-scan imaging took a bit longer than usual. Finally I heard the lovely sound of Truebeam doing that Godzilla atomic breath thing. Two 45-second scans, I pull up my skivvies, pull up my pants, hop off the table, and on my way to the toilet I quietly say to Kay, “That other woman is a moron.”

Cancer should not be this difficult.