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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.

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And by the way, cancer sucks.

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You say “potato,” I say “a starchy, tuberous crop from the perennial nightshade Solanum tuberosum.”

I had my weekly appointment with the oncologist (the incredible Dr. P) and the great nurse practitioner. Somehow the subject was on me and I said …

… 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.

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“Strange now to think of you, gone without corsets & eyes, while I walk on the sunny pavement of Greenwich Village. downtown Manhattan, clear winter noon, and I’ve been up all night, talking, talking, reading the Kaddish aloud, listening to Ray Charles blues shout blind on the phonograph” ~Allen Ginsberg

Quiz time everyone! Inanna and I posed for two photographs for this rebus type quiz.


Ok, I will entertain the possibly that those are not actual photographs of us, or maybe just not recent ones, but I digress. The question of the day is what do you get when a girdle is preceded by a pelvis?

You get a pelvic girdle! And here is another actual picture of me (colorized for your edification):

(Objects in this photo are larger than they appear)

That, my friends is the pelvic girdle. My actual one (ok, that is an artists rendering) has a tumor somewhere around where the word “Rectum” is in the picture. You see how the rectum becomes the butthole, in my case the tumor is pretty much a full surgeon’s finger length in from there.

When I am lying down on Truebeam’s table and having my radiation therapy, the machine circles my body. It projects its beam, aiming at the tumor, as it traverses left-to-right across this picture, then continues across my back, across the other side, and then across the front of my body to the start position. This gives it access to every side of the tumor, and the entire pelvic girdle.

Chemotherapy is delivered directly into my bloodstream 24 hours a day, 7 days a week. Since it is in my blood, it is bathing everything in my pelvic girdle (not to mention every other body part). 5-FU basically works by messing with the DNA of quickly reproducing cells.

5-fluorouracil (5-FU) is a chemotherapeutical agent used to treat cancers including breast and colorectal. Working as an antimetabolite to prevent cell proliferation, it primarily inhibits the enzyme thymidylate synthase blocking the thymidine formation required for DNA synthesis. Although having a relatively short half-life (< 30 mins) it readily enters the brain by passive diffusion.  ~NIH

The effects are drastic on proliferating cells, which need to replicate their DNA; but not so severe in quiescent cells, where thymidine is less essential.

And combined chemotherapy and radiation therapy …

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. ~NIH

Besides shrinking and somewhat killing the tumor, what else is going on?

Looking at the pelvic girdle, it ain’t just holding my tumor. Let’s see … bladder, urethra, prostate, testes, penis, and whatever holds them all together. And we cannot forget skin, folds of skin, hair, and butthole (easier to write than “anus” for some weird reason). All of them getting chemoradiated to different degrees.

I am doing this voluntarily, although my choices are limited. As to what are the side effects that I am experiencing?

  • As you know, my nuts hurt. And are quickly becoming ineffectual.
  • I am queasy fairly often.
  • Tired and not much stamina. Napping does not seem to help. It is not debilitating, but it is frustrating.
  • All typical signals from my lower bowel are confused. I know when I need to go to the bathroom but I have no clue what will happen. All typical sensors telling me if it is just gas, or “poop” or even at times needing to urinate are all screwed up, hence I just sit and find out.
  • Urinating hurts. It is not a true pain as when one has a urinary infection, it is a horrible bizarre feeling that just radiates from there to everywhere. Sort of like a 20 second low level electric shock that just goes through me. I know that sounds strange, or awful, and it is one of those things where I just grin and bear it.
  • Skin rashes are common in the area of radiation, particularly in the folds of skin. That means between your cheeks, top inside of thigh where they meet the body, etc. Also, even though there are no folds, you can get the rash on your the butt where you sit. This is because the radiation machine hates you. I am lucky, so far I am keeping these mostly at bay. Mostly.
  • And diarrhea is common. And we know how much fun that is. I am going to buy stock in Imodium. And Aquaphor.
  • Luckily the mammalian penis is basically just blood vessels, vacuous space, and nerves. Nothing for chemo or radiation to attack with much gusto. (That is a way in polite company for me to say “Yes, my penis still works, thank you for asking.”) But that is moot because for whatever reason, sometimes, but not all times, that feeling I mention about urinating … well … um … occurs anytime any fluid is leaving my body via this modality. Let’s just say there is nothing as much fun as a game of Russian Ejaculatory Roulette.

All in all, my pelvic girdle is a mess, most things concerning it hurt, and they will into August. But I will have a nice sterile pelvic girdle with a smaller tumor and the potential to be cancer free after surgery (September) and more chemo.

I will tell you that the continual discomfort does remind me of that corset phase I went through in college …

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“Try not to associate bodily defect with mental, my good friend, except for a solid reason” ~Charles Dickens, David Copperfield

My daughter, Pearlsky, is severely disabled. She is totally dependent on others, non-mobile, non-verbal, has no known form of communication. For twenty-five years I have strived to make her quality of life, from HER point of view, to be as good as possible. At the same time I have a prayer, I pray that she does not know she is disabled to the degree she is. Because there is no communication, we don’t know what she knows.

I am quickly going from being a caregiver to a care taker. My mind is not affected at all, but my body is being beat up. I am starting to struggle in caring for Pearlsky, and may reach a point where caring for my self is a challenge. Advocacy work, and working with the district is not an issue, I am doing much by phone and informal meetings at good times of day for me. It is tough watching myself go from helping others to needing help. I am officially a person with a disability.

Many of us become disabled; most often because of growing older, an accident, war injury, and the like. I come by my disabilities in a different manner; I choose to lie on a radiation table daily. I choose to wear a pump sending poison throughout my body 24/7. I also know that there are two possible outcomes in the months ahead, and either way the disability will end.


It must be getting to me; I can’t even play the cancer card effectively …

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“Federal and state laws (should) be changed to no longer make it a crime to possess marijuana for private use.” ~Richard M. Nixon

Thoughts on being halfway done with chemo-radiation (14 down, 14 to go), medical marijuana, and assorted crap.

  • Marijuana absolutely helps relieve nausea.
  • Sublingual medical marijuana tastes like licking the undercarriage of a lawn mower.
  • Halfway does not make me feel any better, mentally at least.
  • I have one surgeon, two hematologist/oncologists, two radiologists, an oncologist nurse practitioner, an oncologist nurse, a radiology nurse, and a couple of radiology techs. Only one is condescending and arrogant to the point that I will not even ask a question, I find someone else if I can, and I ignore their unsolicited advice since it at times contradicts others’. Ugh.
  • Everyone I know has been extremely appropriate in their response to my situation. A couple of people I don’t know have not been. While talking to a friend on the street today, a total stranger jumped into the conversation with stories of her relatives, etc. and cancer. I was hoping she would ask the name of my chemo
  • There are hints that the tumor may be shrinking, let’s just say that some of what I leave in the bathroom is returning to a more typical form. As I said to my porn buddy about something else, that’s good shit.
  • The medical marijuana I am using does not have enough THC to get me high. I should try another kind, dude.
  • Fritos. I can’t forget the Fritos.

And yes, my nuts still hurt. Thanks for asking.

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“I busted a mirror and got seven years bad luck, but my lawyer thinks he can get me five.” ~Steven Wright

(One reason I like the quote in the title is that many years ago I opened a comedy show for Steven Wright!)

After tomorrow I am halfway through the first fifth of hell.

  1. Six weeks of chemoradiation
  2. Eight to ten weeks of no active treatment, just feeling like shit
  3. Surgery (hopefully)
  4. Up to four months with a colostomy and chemotherapy
  5. Surgery (to remove colostomy)

And then more of the unknown, potentially cancer free.

Typically I would not celebrate completing one-tenth of anything, but these days I celebrate just being able to get up on that radiation table each day. Maybe I will celebrate by going commando tomorrow …

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