Remember that I have colorectal cancer, and between you and me, I am somewhat … nervous. I log in and this screen comes up:

Under my surgeon’s name it says “Colorectal Cancer is the #2 killer …” Is this supposed to make me feel better? I am to assume that it is my doctor’s talent that keeps it from being the #1 killer? Is this some advertisement for the doctor who is already my doctor? Additionally, wtf?

Then, under my hematologist/oncologist’s name is says she is out of the office for the next nine years, returning on my birthday. Nine years? Really? I spoke to her yesterday, did I scare her off?

Yes, this is going to be an adventure. Welcome aboard.

The post If it’s on the Internet it must be true. appeared first on Disabled Dad.

I go out to breakfast and show up at the hospital at 9:00. First up is the CT scan. They have me sit in a small waiting room and bring me a quart of some liquid to drink. The tech warns me that it does not taste great but it is “ok” and I need to drink it all. If I had been told in advance, I would not be full from breakfast. “If I had been told …” is to become a common refrain.

I drink it all over the half hour, put on a gown, lie in the machine and get scanned. Not too big a deal, only takes a few minutes.

Next I go to the MRI waiting area, I am the only one there. After a few minutes a woman comes out, introduces herself, and tells me the doctor would like me to have an enema to make sure he gets clean pictures. Ugh.

Have you ever given yourself an enema?

No, I never had the pleasure.

She then hands me a gown and a Fleet enema, points out the instructions, points to the restroom and tells me to come back to the waiting area when I am done.

I look at the instructions, and here they are:

So I am thinking “Hey, colorectal cancer ain’t that bad! I get some new experiences.” So I study the directions and head to the bathroom.

Here is a picture of a similar bathroom. It was fairly large and had a sink and toilet, nothing else.

Having multiple engineering degrees, and in my youth being close friends with Isaac Newton, I understand that water flows downhill and one cannot take (get?) an enema standing up. That just won’t work, and besides, I don’t see that on the box. So, let’s take a look:

I go out to ask the tech a question, and of course, she is gone. I come back into the bathroom and I start to think what would work best … I am tired and could use a bit of a lie down …

But that may not be good on my back. No problem, there are other options …

There is no way I am getting on that floor. But then I remember, the waiting area is empty and it has carpet! Perfect.

If one doctor, or one tech, or one administrator was a patient there, I bet things would be different. But they are not.

I close my eyes before I am slid into the MRI machine and don’t open them until we are done. I went to my happy place; next time I will go to Pearlsky’s happy place first and borrow some valium …

Tests are done and it is six days until the big appointment. I pray I don’t get an urgent call to come right in over the next few days.

The post Autocorrect is my worst enema. appeared first on Disabled Dad.

The surgeon does most of the talking (all quotes in this post really were said):

The biopsy and scans confirm rectal cancer. We’ll do a digital exam today to confirm the exact location, I want to make sure I have room for my stapler.

There are forty fingers in this room, do I get to pick?

And that is how the meeting started. Seriously.

I asked why he was referring to it as “rectal” cancer when others have said “colon.” He explained that the location is actually on the border between the colon and rectum so it actually is colorectal cancer. There is a difference in how each is cancer is dealt with, mine will be dealt with as rectal cancer.

The discussion continues as to what the plan will be. I will have 5 ½ weeks of chemotherapy, 24 hours a day, 7 days a week. During this time I will have radiation every weekday. After this, I will have 8–10 weeks of rest, no therapy of any kind. This will be followed by surgery, and then most likely 4 months of chemotherapy. The operation will leave me with a temporary ostomy that will be removed at the end of the chemotherapy.

What are the odds I am going to live until surgery?

100%

How can you say that? You’ve been doing this 24 years.

And I have never lost a patient before surgery. I cannot make any promises as to what happens after.

Ok. Maybe I should stop asking question. But of course I don’t.

What stage is the cancer?

You have to be careful with staging this type of cancer. Yours is early stage 3, but that is not 3 times worse than stage 1, it really does not mean much. Your lungs and liver are clear, it is in the first lymph nodes.

At that point it is all sinking in. I found my self keeping my eyes closed a good amount while listening, it helps me concentrate. Every time I opened my eyes, they met the eyes of the oncologist. She has these deep brown eyes and she was looking right into mine. For whatever reason, it was very comforting. There was something about her. And yes, I found her to be very cute and as I said, impressively intelligent and experienced. I knew she would help me.

During all the treatment before surgery, will I be foggy? Will my mind be clear?

The cancer is in your butt, not your head!

Well I have been told before that my head is up my ass.

This is a lot to take in. I have colon and rectal cancer. I will have radiation and chemotherapy at the same time before surgery and then more chemo is possible. I will have an ostomy. Fuck.

Do I have any options?

No. There is no plan B.

The oncologist jumped in at this point. She explained that they discussed one on-going trial as a possibility for me. That trial is the same as above but without the radiation.

Why would I choose the trial? What are the side effects of the radiation?

There may be some skin irritation. You may lose fertility.

(laughing) You can just take them as well, that does not matter.

We don’t do that, sorry. And you may lose your pubic hair.

(turning to Inanna) Well, it will make me look bigger.
Ok, I don’t want the trial. Are there any other decisions?

Because you currently have neuropathy, we will have to carefully consider the chemotherapy after surgery, but we will deal with that later.

And there we were. I have my doctors, I have my plan, I have my stage 3 colorectal cancer, and I my lungs and liver are clear. I had one more question.

Any of you have a Jewish mother?

(Radiologist) I have two, my wife and my mom.

(Sugeon) Does Italian count?

How do I tell mine?

Silence.

The surgeon then does a check as to how far in the tumor is. Yes, he can feel it with his finger in my butt. And yes, I can feel his finger in my butt (I am so glad this blog is anonymous). If it is far enough in, the ostomy will be temporary.

Great! There is plenty of room for my stapler.

The highlight of the meeting came with the surgeon’s finger up my ass.

The post Cerberus appeared first on Disabled Dad.

“A port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has an area through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick.” (Thanks Wikipedia) This picture shows what and where it is, but it is under the skin. The circular part in the middle is where the needle goes, it is just under the skin.

With a four inch catheter hanging from the port, I go to my 8:00 with the oncologist.

I am rather upset that the original oncologist, the one I met at the “Cerberus” meeting, is out on unexpected maternity leave. Well, unexpectedly early. I really liked her and she made a difference, but she is now replaced by another doctor. Multiple people assure me I will like him. And so I meet him …

Really nice guy, on the young side (aren’t they all), fantastic pedigree and education. He will do.

The chemo drug I will be getting is called Fluorouracil. Because there is a fluorine atom on the 5th carbon of a uracil ring, the drug is often referred to as “5-FU” … my favorite fun-fact about 5-FU is this:

There is very little difference between the minimum effective dose and maximum tolerated dose of 5-FU, and the drug exhibits marked individual pharmacokinetic variability.

Yeah, that sucks. The amount of the drug needed to work is very close to the maximum you can tolerate AND it is almost impossible to figure out what that dose is.

I will be getting this for about 6 weeks, 24/7. It is 10% of the strength of “regular” chemo (I will get that later). For now the goal is to sensitize the cancer cells as much as possible to the radiation so the radiation is more effective. They only do this with certain cancers, and mine qualifies.

Meet my new friend, “Effyou” 

To give you some perspective, it is just a tad bigger than my iPhone 5 (yeah, I know, but it works) and significantly thicker. It is attached to a mini IV bag, about the same size as the unit, that has a full week of poison medication in it. Everyone needs to name their pump, so the Internet tells me, hence “Effyou.”

There are two primary ways to keep the pump with you; in a “fanny pack” / purse, or in a “PoppyPocket” (an elastic band with pockets, shown here on Mr. Poppy I presume). Because I often need to get up in the middle of night to deal with Pearlsky, I worry about putting the pump on the nightstand and just walking away (ouch). I will sleep with it in a PoppyPocket on my stomach, I do not sleep on my stomach, it should work. I have ordered a Spongebob patch for my black fanny pack that I will be using during the day. Why not?

You may be wondering how I shower with the port being attached to an electronic device that is attached to me. Yeah, I wonder about that as well. The tubing is six feet long and they say to hang the pump outside the shower. I also need to cover the area around the port and keep it all dry. People use Saran Wrap and tape, Press ‘N’ Seal, etc.

Personally, I think I just won’t shower for the next 6 weeks. F U

The post F U, 5 times appeared first on Disabled Dad.

The poor schmuck patient lies on the table (black and red thing), and the table moves into the center-ish of the device. Those two “wings” fold in and the entire machine (that you see) turns around the table (takes maybe 20 seconds). The round part is where the beam comes out.

The technicians are in another room at monitors. The first spin of the machine apparently gives the techs a view of my viscera and they can see exactly where the beam will land. If it is good, the next spin radiates me.

This is the table, I lie face down. They do cover it with a sheet (where was this table when I needed it?) A small wedge/pillow is put on the red end and my “belly” goes over the large opening. The goal is to move my small intestine out of the way, so it would hang somewhat in that opening. Trouble is, I don’t have much of a belly. The two concave carve-outs are for my thighs, and yes, the cup is for the family jewels. Which, when done with all this radiation, will be more costume jewelry than anything else.

A couple of weeks ago I was in a different machine that they use for positioning. I moved around, they played with the machine, and then I got three tattoos. They are small blue dots, one near my tailbone, and one on each hip. When I get on this table, the machine projects a green crosshair and, guided by the tattoos, I am physically positioned the same way. Every time.

The other internal organ they like moved out of the way is my bladder. I need to show up with a full bladder each time, somehow that moves it out of the way. We want the machine to have a clear shot at the tumor.

Today did not go as planned. I get there on time with a full bladder. My turn comes up, I go in, get up on the table in my knees, drop my trousers and lay down bare-assed (they do their best for modesty, but if they want to see an old guy’s butt, ‘go for it’). They line up the dots and crosshairs and I try to lie still. That full bladder is not the most comfortable. The machine does one spin and then … nothing. A few minutes they come in and want to adjust my position, which they do by pulling the sheet under me, I am not supposed to help at all. Then one more spin. Nope, they come in and something about the angle of my hips. Another spin and a long wait. My guess is that they paged someone more experienced because they finally did some tilt of the table and we got a good scan. The last two days it was honestly a three minute procedure (table time), today was forty minutes. With a full bladder. It was not fun.

Remember I have Effyou, my pump, attached with its catheter, etc. Just getting off the table and picking up my pants (with attached fanny pack) takes longer than a proper scan.

There was a question as to if I was having a reaction to the bandage covering the port so I was sent to the chemo clinic. They changed the dressing and I need to go to them tomorrow before radiation.

Here is the new dressing.

I am thinking of starting a new line of costume jewelry … what do you think?

The post “Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” ~Marie Curie appeared first on Disabled Dad.

About two minutes into the procedure …

And this is when the fetus went into distress so we stopped.

Ok, so what are the takeaways here?

• Gordon is a schmuck
• Ultrasounds are not inherently safe
• Three weeks later when Gordon took the machine home to re-test with new software, I gave my notice

I showed up for my 1:15 PM radiation treatment on time today. With a full bladder. Yes, I do what I am told.

Turns out one of the two radiation machines was not functioning properly and they were trying to run all the appointments on one machine. The broken one was the one I am scanned on …  We were given the offer to skip today and add a day at the end of our treatment; I decided to hold out for extra frequent scanner miles and a free drink.

Once they said the engineers were working on the machine, I knew we were in trouble.

After an hour and a half, keeping my bladder full, thank you very much, they called me. They actually took me to my usual machine, the broken one. All I could think about was the ultrasound machine from so many years ago … Did they re-calibrate the massive radiation monster I was about to lie under? Did they fully test whatever fix they needed to do? Don’t they first want to take that skinny guy in the waiting room who never talks?

I am met by two young women technicians I have never met before. The routine is the same, I get on my knees on the table, drop my pants around my thighs and lie face down. I lie there with my lack of belly not really hanging through the big opening in the table and my junk in a cup. I lift my hips, somehow my briefs go down and the machine swings around over me.

A green cross-hair is projected on me and they need to line up my three tattoos with the green lines. This is done by the techs grabbing the sheet I am lying on and pulling. Usually they need to move me just a bit and three or four pulls and we are all set. These two were not so adept, I finally said that this is all wrong and we started again. I shifted into what I felt like was the correct position. That did not seem to work too well for them either.

After another couple of pulls I simply said …

My bare ass can’t be that distracting.

Want to bet?

Nicest thing said to me in years …

The post “The ass is the face of the soul of sex.” ~Charles Bukowski appeared first on Disabled Dad.

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.

The post Structure, consistency, or random crap appeared first on Disabled Dad.

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.

The post Don’t you do this everyday? appeared first on Disabled Dad.

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.

The post Paging Dr. Pasteur, Dr. Lister … anyone? appeared first on Disabled Dad.

… and I have this poison going through me all the time …

at that point the nurse practitioner interrupted …

You cannot think of it that way. We have a patient who calls her pump “Mr. Poison” and …

I stopped her.

I know this is my best chance at staying alive. I understand this is being used as medicine and I come here voluntarily and let you hook me up. I get all that. And at the same time it is making me sick, causing me all sorts of discomfort, and is messing up more than just the cancer cells. I am not obsessed that it is just poison, but I am realistic that that is what it is.

I think we have another case of “never been in my shoes, have you?” on a physical level. Let’s take a look at one of the first things handed to me when I got the pump and poison chemo.

A bit scary. I asked the chemo nurse (who, I am not sad to say, I am no longer assigned to) if this was necessary since I am only getting 1/5 of a teaspoon (1 ml.) an hour, not much will really spill. She clearly said yes, it is needed for any amount.

Ok, let’s look at some of the instruction, they are inside, with a pair of blue gloves.

Can’t imagine why we patients get the impression that this is poison.

Let’s call the whole thing off.

The post You say “potato,” I say “a starchy, tuberous crop from the perennial nightshade Solanum tuberosum.” appeared first on Disabled Dad.