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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.

“You’re in trouble” ~every teacher I ever had

So now that you are the proud owners of more information about my bowels than you ever wanted to know … urine trouble is next.

I have been urinating for almost 60 years now. I don’t remember the first time, but my mother claims she does.

Before chemo-radiation started I had an appointment at radiology to mark my body as to where to aim Truebeam, my jigawatt girlfriend. I got to the appointment on time but the radiologist, I was told, had a weekly meeting at that time every week, and I had to wait 45 minutes. Yeah, that pissed me off as well, so to speak. After 40 minutes or so of cooling my heels, I went to the only person at the desk and asked about a men’s room. I went there, found a urinal, zipped open, took it out, let it stream, shook, shivered, put it away, zipped up, and after washing my hands returned to the waiting room. (If you are wondering about that shivered part, here is an an NBC article devoted to piss shivers.)

The doctor called me in. For reasons I cannot fathom, my radiologist reminds me of Jeff Goldblum. That is fine and if he wants to upload a virus into the mothership of my tumor, removing the force shields, blow it all to hell saving me and all mankind, then all the more power to him.

I am on the radiation table, they are futzing around, and after about 10 or 15 minutes they stop and tell me my bladder is not full enough. I was never told to come with a full bladder, I happen to have come with a full bladder, and yet, it was all moot. They bring me three cups of water that I drink and then restart the entire imaging procedure after 15 minutes. Multiple Sharpie® marks and three tattoos later I do that peeing thing again and go home.

A full bladder sits in a different position in the pelvic girdle and I am told somewhat out of the way of the radiation. It was important to always have a full bladder when lying on Truebeam. As the chemo-radiation progressed all my feelings in that area changed. It quickly became apparent to me that I could not really feel how full my bladder was. Or if it was full. Or empty. I would empty it around 11:00 and then depend on how much I was able to drink by 1:15 and that was the best I could do.

One day I was in the chemo clinic first and then had to walk to radiation which is literally about as far as you can get in the hospital complex and stay in a building. I knew my bladder had to be pretty full and about half way there I knew I was in trouble, all of the sudden it was so full I really had to deal with it. Immediately. I found a bathroom and was able to relieve just enough to keep my bladder full and walk to radiation. I know what you are thinking, but yes, really, I can control it to that degree. It stems from a trick I taught myself in college that I will not describe here, just ask any lovers I have had since then. But I digress …

I also found that immediately after radiation I would go to the bathroom (with a presumably full bladder) and it was always difficult to “go.” I don’t know why, but by the time I got home that part was back to normal.

After about two weeks of chemo-radiation, it started to hurt to urinate. Not the same as a urinary infection, more of a strange, buzzing sensation like an electric shock (but not that awful). One of the curses of being a male with a urinary infection, or whatever I was experiencing, is that our urethra (the tube from the bladder to the outside world) is longer than a woman’s. Some unfortunate men it is only six inches longer, but I won’t go into my good luck turned curse. Strangely enough, the pain was really concentrated more towards the end of my penis and definitely from within my urethra. It would cause an awful sensation starting there and then throughout my body, like an electric shudder. And it would quickly dissipate and be gone. It was not every time I went, more often towards the evenings.

That brings us to today, almost two weeks since the chemo-radiation ended. It still happens but not as often and not as strong. But the general sensation of what is going on is still not all there. And once I start to urinate, the feeling that I am urinating stays after I am done. I actually need to look to see if I am done.

Why am I sharing all of this? Well, for one thing, no one told me all this shit would happen or could happen. Others should know, unless of course that none of this happens to anyone else and I am just fucked. Don’t tell me. Ignorance is bliss.

Ok, we have poop and pee out of the way.

Judging by the look I got from Inanna when I mentioned the next post would be on the painful ejaculations, me thinks there may not be a third installment in the “Things That Don’t Come Out Of My Body As Planned” trilogy for if there is, I may not have a reason to ejaculate for a while.

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“And you shall have a trowel with your tools, and when you sit down outside, you shall dig a hole with it and turn back and cover up your excrement.” ~Deuteronomy 23:13

Holy shit … does the bible really talk about poop? You bet it does …

And you shall have a trowel with your tools, and when you sit down outside, you shall dig a hole with it and turn back and cover up your excrement. ~Deuteronomy 23:13

And the hidden message here is that excrement is bad, dirty. Cover up your shit, man! And then in the next verse we learn why …

Because the Lord your G-d walks in the midst of your camp, to deliver you and to give up your enemies before you, therefore your camp must be holy, so that He may not see anything indecent among you and turn away from you. ~Deuteronomy 23:13

Ah, now that is confusing. Poop is “indecent” and must be removed and buried or the holy one, blessed be He will turn away. WTF? If, in fact, we are created in his image, and our rear discharge is indecent, how does all this correlate? I will leave that to you and your clergy.

I honestly don’t remember what we called this bodily waste when I was growing up. I think bm and bowel movement were used, I should ask mom. And I was never into laughing about it as a kid. Nothing strange or whatever, just didn’t particularly find it funny. And throughout life, never spoke about it much. My children are severely disabled and I have continually been changing diapers for just about 26 years. Shit is my life.

My first college roommate, in 1976, was the Shah of Iran’s nephew. Really. And his father was a military leader in the palace. At that point, Iran was not the country it is now. Ali did not speak more than a handful of words in English. He was great, looked exactly like a shorter Omar Sharif, had oodles of money, and we got huge tins of pistachios every two weeks. Early on he called me over, was tugging on his bedding and asked

How you call this?

That’s a sheet.

Shit

No, sheet.

Shit?

Honestly, I took him in to the bathroom and explained.

In 2012, The New York Times had an article entitled As West Harlem Picks Up, Dog Owners Don’t. Apparently to avoid using words that may be objectionable, the author seems to bend over backwards not to shit on anyone’s fecal sensitivity. Here are the synonyms used in that one article:

  • dog dirt
  • nasty bit of business
  • curb-level scourge
  • renegade dog leavings
  • waste / dog waste
  • stuff
  • poop
  • what a dog has left behind
  • instances of unlucky steps
  • doggy-do

What I don’t understand is why they did not just use scat. Merriam-Webster defines scat as “an animal fecal dropping.” Works for people as well actually.

Personally, I really like scat. Scat itself. So much I have been known to pay money to be exposed to scat, at least in my younger days. And who does scat better than Ella Fitzgerald and The Velvet Fog, aka Mel Tormé?

Ok, on to the post.

This entire adventure started many months ago when I noticed changes in my … ummm … droppings scat feces stools poop. As Oprah is said to have said (and the Internet does not lie) “Everyone looks at their poop.” There were changes in color (lighter), consistency (a bit looser), and the feeling as it exited my (very cute) butt. This was for a while and I noticed what may have been (it was) blood. Remember that radiation radiates most, if not all, of my pelvic girdle. That includes parts of my intestines and rectum (and what used to be the family jewels). That causes (and possibly also because of the concurrent chemotherapy) a very common side effect: diarrhea. I found that everything in that area was confused; I was not always sure if I needed to just urinate, to defecate, some of both or sometimes neither. It was not the easiest to control it all. No accidents, but absolutely needed to sit, no matter what I thought I had to do. The doctors would ask if I had blood in my stool, and when I asked what they would do different for a “yes” or a “no,” the answer was “nothing.” That is when I started eating beets (which I love anyway) as my little protest. (In case you are scratching your head, for many people beets cause their poop to be reddish.)

Towards the end of the chemo-radiation, my poop was somewhat “normalizing.” That is, normal for me. Not that I ever looked (lol), but I know what my poop generally looked like over the past, oh, 59 odd years. Or at least couple of decades. Color was darkening a bit, and consistency was a bit more familiar. That was at least the right direction.

I am now a week and a bit past the chemo-radiation. And guess what?

My poop is back! I looked this morning and saw my old friend! (Apologies to any old friends reading this.)

I am not a doctor, nor do I play one on this blog. I am just a poor shmuck with rectal cancer, but this has to be a good sign. Not a sign from the holy one, blessed be He, because He would have me bury it. But it has to be good. Please, G-d, tell me this is good.

And then like all the old girlfriends, it was gone in a flush.

 

My next medical appointment is for imaging, a CT and an MRI, on August 6 and then I meet Cerberus II two days later. The scans are to see how the tumor has changed and to see if the cancer has spread. The idea of that scares me shitless.

 

And now for some great scat. In her 1949 performance of “Flyin’ Home”, Fitzgerald alternates the bilabial “b” and “p” plosives with the alveolar plosive “d”. The “b” and “p” sounds are formed similarly to the sounds of jazz wind instruments, which sound by the release of built-up mouth air pressure onto the reed, while the “d” sound is similar to the tonguing on jazz brass instruments. William Stewart, a Seattle researcher, has proposed that this alternation simulates the exchange of riffs between the wind and brass sections that is common in big bands.

 

 

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“You know you’re getting old when all the names in your black book have MD after them.” ~Harrison Ford

Almost everything I write in this blog is true. There is the occasional trivial side comment that is very obviously not true, but inserted for humor or sarcasm, and none of the names are real. I do that to stay anonymous; I don’t identify the hospital nor any employee but again, it is all true, especially when I quote people. The concept of an anonymous blog started when I was blogging about being a single father of a severely disabled daughter. I was very open about life and could even say things that I would not want anyone to know (that it was from me). I would get emails thanking me for saying things that others thought they were the only ones thinking.

This blog is not quite as anonymous, there are some readers who know me, and the hospital is aware of it. That does not stop me from saying the most intimate things anyway.

The blog about my daughter and me was only about that. It was rare that I spoke about other aspects of my life, as I don’t here. This blog is about me and that fucking tumor a few inches up my butt. This post is a slight diversion from that.

Five years and two days ago my severely disabled daughter was sexually molested during the summer extended year program at her high school. Five years and two days ago was the single worst day of my life. I have not been the same since.

While still paralyzed by the situation, I wrote this blog post. That was followed a few days later by this one with a title I love. Just under a year later I was interviewed and part of the interview was about “the incident.” By this time we were aware that Pearlsky did indeed know what had happened to her. That was a whole new level of devastating. The interview uses my nom de plume “SingleDad” or SD.

I really don’t know if I would have survived that period of my life if it were not for a special woman who had recently entered my life. Two years after the incident (hence a bit over three years ago) she moved to this country and moved in with her severely disabled daughter.

Inanna is the ancient Sumerian goddess of love, beauty, sex, desire, fertility, war, combat, justice, and political power. Obviously a very busy and talented goddess. That is the name I use for her here.

We spent about two and a half weeks between knowing I had colorectal cancer and having the first meeting with the three doctors to learn more. A devastating, difficult, soul searching two and a half weeks. Early on I turned to Inanna and said:

I will understand if you want to move back home to your family.

She looked at me as if I was crazy. She then told me that I was crazy.

She has stood with me the entire time. She came to the important appointments and would come to others if I wanted. She asked if she should quit her job and stay home working with the girls (“no”). She understands the side effects and not only how they affect me, but how they affect her.

I don’t know if I could get through this without her. If I was still SingleDad it would be devastating. Those of you who have followed that blog know the fear of a primary caregiver when considering their own mortality. My mortality is right now up my ass in my face.

Inanna is staying in this house, period. Her choice, her words. With or without me, with both girls. The burden that removes is simply more than you can imagine.

Cancer is a very lonely disease. But it is a bit easier if you have an ancient Sumerian goddess to help get you through the day.

 

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“The feedback I get is that my books are honest. I don’t sugar-coat anything. Life is really hard.” ~ Laurie Halse Anderson

When things go really wrong, I generally let people know. I have complained at hospitals in the past, with good reason, and often once treatment – or the emergency room visit – is done. If someone does their job anywhere from barely acceptable to very competently, I don’t feel there is generally a reason to say something. If they go beyond very competently, go out of their way, or do more than expected, that should be noted as well.

I am done with radiation, hopefully forever. For the most part the staff was great. Don’t get me wrong, the whole thing really sucked, but several of the people made a difference because they are in that beyond very competently category. Hence, I wanted someone to know.

Here is an email I sent to the director of the oncology radiation department and that person’s supervisor. Names have been changed to protect the cancer patient …

Director Smith, Director Jones:

As I am finished with my 28 workdays of chemo-radiation, I feel it is important and timely to relate to you some experiences with your staff during my radiation protocol. Professionally I am an advocate for others, it is time to internalize that.

I am under the care of Dr. Wilhelm Rontgen. Although one of the newer members of your team, he obviously belongs at a world class hospital. To this patient, he comes across as a professional, intelligent, willing to answer all questions, wanting to know the patient’s point of view and more. Unfortunately I have no way to evaluate his skills specifically relating to radiology … but he has my full confidence. Every interaction with him has been extremely positive.
Virginia Avenel Henderson was my primary nurse. She was also repeatedly the only one correct when I was given contrary information or advice (happened multiple times). She had the ability to sense how I was doing and ask the right questions (or refrain from the wrong ones), to offer helpful advice, and more. She is absolutely personable, caring, and empathetic (something unfortunately in very short supply). Seeing her most days (literally; not necessarily 1:1) was simply comforting; someone was nearby who could answer my questions, and who cared. She is perfect for that job and I appreciate her work tremendously.
It is important to note how lonely cancer is, from a patient’s point of view. No matter how many people accompany me to appointments or how loving a family one has, ultimately it is me vs. my tumor. That radiation table is a very lonely place.
That brings me to the radiology technicians (guessing at their title here). It is not my place, but I would love to know why they are always changing. This definitely adds to the anxiety and general not-great-experience. One saving grace is Kay. She was with me for about 25 of the 28 treatments. That consistency made a huge difference. There was one day with two new techs who, frankly, were awful at their job, did not properly introduce themselves, and made it a really bad experience. Kay always greets with a caring smile, an air of competency and professionalism, and again, she is a known quantity. The first weeks I often also saw Melissa, but that ended, and the last two weeks included Steven and Paula. I name these individuals because they also made it doable for me, made a difference, especially when there was consistency of their presence. When Steven asked me on my last day what I wanted to listen to, and I responded “anything loud and fast” he picked the perfect Def Leppard song. On balance there is a tech that caused me to decide if I saw her again I was going to insist she have nothing to do with my medical care in any fashion ever again. She is a detriment to your team. Seriously. But Kay, Melissa, Steven and Paula all made the effort to know my name, knew how to quickly position me, seemed to understand what I was going through, and made it all manageable. Even when I did not think I could manage.
And that leaves Lee Holloway. Anytime I mentioned her to anyone else, co-worker or patient, the response was always the same, “Isn’t she great?” She is, and she is a tremendous asset to that office. I have no idea what her title is nor her job description and I have seen her do multiple things, all with a smile. Somehow when I would scan my blue card she would know whether to say hello or not, she would know my mood (which, like many others, is always dependent on how awful I feel that day). She is professional, helpful, kind, empathetic, funny, and very intelligent. I knew she could not give me medical advice like Virgina, she could not position my on the table like Kay, but she absolutely could make me feel that there was real humanity in the office (and she is probably the only team member there who has not seen my bare butt … nor asked to … and that’s a plus – for both of us). I wrote this early on, before I even knew her name:

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.

Please buy Lee an iced coffee from me for all the kindness and occasional small talk. My biggest problem with Lee is that I am not a single, healthy, 30 years-old outdoor adventurer, and didn’t meet her in a coffee shop. Oh well. Life goes on (or so I hope).
-DisabledDad aka medical record #05A3692

You may be wondering what the response to the email was … it has been five days and total silence.

[Editor’s note: Actually, there is no editor, just me, but I digress. About 45 minutes after posting this the hospital’s patient relations office called, well, a woman in the office called. Very nice conversation!]

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“So you’re an advocate, eh? … Then advocate for yourself!” ~(with apologies to) Max Bialystock

(I spent about eight or nine hours working to get this 25 second video clip and then put it here. And I have cancer. You have no excuse not to watch it. So there.)

Professionally, I am an advocate. I primarily do special education advocacy, working with families and school districts. I also do a good amount of work with bullying.

I am often baffled as to why parents (and often the student) will not complain to the school, only to me. It is very difficult to get a family to file a state complaint when it is fully justified. I am often asked not to say anything out of fear. I find myself explaining that problems don’t get solved without putting them “on the table.” What is it that people are worried about?

Retaliation. Yes, it is illegal and not tolerated but there is the fear they will “take it out on my child” or my favorite …

I don’t want to be labeled the difficult parent. I don’t want to be that parent.

Why not? If your child is not worth fighting for, what is left? I am a good advocate, I get references from families and from school district administrators, yet my hands are often tied.

Teachers and administrators do not retaliate against students for the vast majority of cases. I personally have never seen it. But people don’t want to “rock the boat or be that parent.”

I should have advocated for myself, and my health, when the nurse clearly voided any chance of changing my bandage in a sterile manner. I did not.

I should have advocated for myself when my first chemo nurse turned out to be a condescending, self-believed-telepathic, un-empathetic twit. Let me clarify …

I came to my appointment to start the chemotherapy as prepared as I was told to be. I had read all the materials that they offered and had already met with the oncologist. I did not have any questions going in. She started to explain the medication and was talking to me as if I was in middle school. I stopped her and said

You can speak on a different level. I read all the materials, I have three severely disabled kids in their twenties, and a lot of medical experience.

I will explain it all to you just like I do to doctors and will not skip anything.

I want to hear all you have to say, it is the level you are speaking on that I am pointing out, that’s all.

I will not skip anything.

Ok, whatever. She obviously did not hear what I was saying. I often say that to doctors and the conversation goes to a level where I learn a lot more and can engage. But alas, she continued like I was a kid that did not read the materials. It was a joke. She also told me very clearly to go home “today” and take a pill for nausea and take it every morning for the six weeks. This was in direct contradiction to the oncologist and one of my other nurses. (I never took the pills, never needed them.)

Next time I saw her, I said

I have a question about the two nausea pills and their differences.

That’s because you did not read the materials and did not listen last week.

She walked away, came back with a copy of the paperwork I already had, and told me to read it at home. And then she simply repeated what was on the paper. It was nothing like what my question was, which she did not give me a chance to ask. She assumed she that the question concerned when to take each one, when in fact my question was on the pharmacology of the pills. She did not bother to listen; she simply believed she knew what I was going to ask. She was wrong. This was all done quickly and with attitude. I did not interrupt her, no point. When I was done, I walked over to the where the pharmacists hang out with their chemo toys and asked them. They were great, and spoke to me as if I was an adult.

I can go on about Nurse Ratched but you get the idea. Trust me there is more.

I got a new nurse when my wonderful nurse practitioner got wind that I was not happy. So why did I not advocate for myself?

A special education teacher or a principal can’t really retaliate easily nor do they want to. There are many other people around, they know the parent and their (very smart, handsome, and suave tumor-enabled) advocate are watching. I do not feel the same about the hospital.

This hospital has a procedure they go through before they start the chemotherapy coursing through my veins. My chemo nurse replaces my catheter and before turning on the pump calls over another nurse. They go through a routine designed as a double-check of the medication, the pump settings, if I am the right patient, etc. Even the bag o’ poison has two signatures on it to verify two people know what the drug is, the strength, etc.

The way Nurse R. did it, any accidental error would, indeed be caught. But I noticed the first week, that if either nurse wanted to make a mistake (maybe in collusion with my tumor), they easily could and the other nurse would not catch it. There was a loophole in the routine. After my nurse was changed, I noticed a subtle difference in the way the routine was followed by others and it eliminated that loophole.

One thing that stopped me from advocating for myself in any of these situations is simply that in my case intentional retaliation is quite possible and can mean death. Anxiety when working with a patient who has complained or simply not wanting to work with a specific patient can be enough of a distraction for an unintentional error. Getting someone’s friend in trouble is not much better, and I have learned in life, you never know who is sleeping with whom.

***

Now that my nuts have stopped hurting, I don’t particularly want to die by a nursing error. But if it has to be death-by-nurse, do I get to choose?

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“You are a side effect,” Van Houten continued, “of an evolutionary process that cares little for individual lives. You are a failed experiment in mutation.” ~John Green, The Fault in Our Stars

Three days, five showers, no treatments!

With respect to side effects, there was general agreement among “my” doctors, nurses, etc. on certain things:

  • Both chemo and radiation make you tired, if not exhausted. With one of them, the tiredness can be abated with naps, the other, naps don’t help. I forget which is which, but it is moot. Naps are not working for me.
  • I will get queasy but should not get full-on nausea.
  • Rashes and skin irritation often occurs on palms, sole of feet, buttocks, between butt cheeks, and in the folds of skin around the pelvis / genital area.
  • My anus may decide to show who is boss and become rather bothersome.
  • I may lose any hair in the region of the radiation, i.e., pubic hair.
  • Side effects won’t start until the third week, or so, and will continue for three weeks, or so, after treatments end.
  • I may get cancer.

Three days after treatment ended …

  • I am exhausted. All The Time. Yes, I can function, and this morning I played lawyer at a state special education hearing. I also crashed pretty hard afterwards (in my bed, not my car). And naps don’t do squat. It is an interesting exhaustion, a bit more physical than mental if that makes sense.  Well, even if it does not make sense, that is the way it is.
  • I get queasy daily. Usually in the afternoon and evening. So far, pure ginger tea, crystallized ginger candy, and “medical” marijuana work. I am using the marijuana sparingly only because I don’t need to use it more. I have not taken the drugs they have given me in case I need them. Yes, the drug the first chemo nurse said to “take as soon as you get home and every morning.” (So glad my chemo nurse was changed.)
  • No rashes to speak of! And no, I am not a Ken doll, yes I have creases, they just stayed healthy! What is interesting is that yesterday and today, while the side effects are increasing, my hands feel a tad different. Almost like I am wearing tight gloves. No rash, and will ride it out a day or two before asking.
  • Ah, the end of my rectum, my butthole. Yep, talking about it in public, lol. There was great interest in it, so much so that during the treatments four doctors, a nurse practitioner and a nurse checked it out multiple times. When I asked one doctor why a different one checked it out, the answer was …

    That’s my area. They don’t even know what they are looking for.

    Wonderful.

  • I have not lost any hair, anywhere.
  • As expected, the side effects are still getting worse, but not by all that much. The exhaustion is a bit of a bitch though.
  • [Caution, I think my use-professional-language-filter is failing] Cancer? Cancer is a fucking possible side effect of radiation to help cure me of … wait for it … CANCER?! Are you shitting me? “It’s true” they said as I signed the consent. Cancer. What the fuck? I will know if I have more cancer in three weeks when there is more imaging. Cancer. Really? F U.

There is a worry about peripheral neuropathy. That is a nerve condition and often affects diabetics where they either cannot feel their feet, and/or there is numbness and tingling, and/or break-through pain (like a lightning bolt down your leg). I have had peripheral neuropathy for several years for a totally different reason. There is fear it can get worse with the chemo after surgery, no expectation for it to change with this first course. Surprise, it ramped up a bit this past week. Unexpected, we will see if it continues.

Have I mentioned that cancer sucks?

There are three side effects of acid: enhanced long-term memory, decreased short-term memory, and I forget the third.
~Timothy Leary

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