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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.

“There is nothing like staying at home for real comfort.” ~Jane Austen

I am home. I got here yesterday, just before dinnertime.

It has been a tough road. Had everything gone smoothly I would have been home four days earlier, but alas, it did not work out that way. As everything in life, this too has passed and here I am.

That said, I was on the phone with my surgeon at 2 AM discussing if I need to ambulance back. We decided to wait it out under certain parameters; today is going well.

Yes, I have a lot of posts to write from my notes and they will soon come fast and furious. I will give you the thirty second summary here:

  • Surgery went two hours longer than predicted, but went well.
  • Radiation did a heck of a job on my tissues, hence the added two hours.
  • Good thing I was awake and questioning the first hour I was in a room. “No, I don’t take Lopressor, I have no idea what it is, and I am refusing the medication.” Ooops, a medication error. I guess they do really happen.
  • A day of really nasty retching ended with three attempts at an NG tube, some relief …
  • Only to discover a blockage elsewhere to be resolved.

I could go on, and will. I’ll discuss those items and more in the next few days as well as living with a temporary ostemy bag. There is one thing I do want to say clearly though…

There is an incredible staff on that surgical floor. The doctors, nurses, assistants, the entire team is top notch. I have spent 25 years with both my severely disabled kids in and out of a total of four hospitals. I have had personal interactions in the handful I and those close to me have been in over the years. I have worked in emergency rooms, etc. This staff was (is) top-notch and does show some of the advantages of a big city, Ivy League medical teaching hospital.

So you will be reading about the good, bad, and ugly. And I do not have pathology reports yet, so don’t know the odds of my cancerfreeness.

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Ok-ish

Surgery went long. A few setbacks since but nothing unheard of.

Typing with one finger on a blurry keyboard, did not want to leave you hanging.

Lots to come. Promise. Next goal to lose NG tube keeping my stomach from filling with acid and crap.

Words I have never said in either blog: Dear friends: prayers can’t hurt.

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24 hours

Twenty four hours from now I sure as shit better be in a room on the surgical floor. It is mid-evening on Wednesday, the operating room is reserved for me from 7:30 AM to 1 PM tomorrow. For some unclear reason, I need to be at the hospital at 6:00 AM so we have a nanny coming at 5:30 AM to the house.

I made an error in my photo in the last post as to my preparations. I do not need to take any enema today! But I need to drink two bottles of magnesium citrate, one at noon and one four hours later. I need to take a lot of antibiotics today, and am into that process. The last two days, and today, I am taking a pill that relaxes the neck of my bladder. Apparently when a male has surgery in their pelvic area it is often hard to urinate for a few days. In an effort to not need a catheter, they use this pill as part of the preparation. Trust me, if I need a catheter, you will know …

I have spent the last few hours making many trips to the toilet. The inside of my colon, I am sure, is bright and shiny right now. My stomach is not so great from the antibiotics, and there are more to come. I still need to take my shower with the surgical scrub, tonight and tomorrow.

I think I am set. I have very high confidence that I will wake up from surgery, I have every time in the past. That is the next milestone, followed by getting my butt back home, hopefully by Monday. That depends on my stoma working well and my working well with the stoma. We are going to be dear friends.

Inanna is incredible. My mom traveled to here and my sister lives here. Being co-chair of an organization whose membership is overwhelmingly women caregivers is helpful! And we have some wonderful nannies (our word for the personal care attendants) working with the girls.

I am not scared, because there is nothing tomorrow to be scared about. I am anxious about the pathology report but that will be days away. I have come to terms with the stoma, and I am practicing to make a good first impression with it. I hope it likes me.

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Good thing I got my merit badge in colorectal surgery

Who says I don’t know how to prepare?

 

  • 2 Skin markers, regular tip, one sterile
  • 1 Home Skills Kit CD
  • 1 practice 2-piece ostomy bag
  • 2 saline enemas with gentle glide tip and now with 25% more lubrication
  • Hibiclens surgical scrub
  • 4 pill vials with confusing and erroneous instructions
  • 2 carbohydrate energy gels, blueberry-pomegranate
  • 6 Pedialyte electrolyte powder pre-measured packets, strawberry-lemonade
  • 4 G-2 Gatorade, lemon-lime (only 1 shown)
  • 1 ReliaMed Adjustable Ostomy Appliance Belt, 1 in., size medium, 26 in-43 in
  • 2 Boxer Briefs, black, high waist with pocket for ostomy bag,  size L (36-38″)
  • 1 Boxer Brief, gray, high waist with pocket for ostomy bag,  size XL (40-42″)
  • 1 Unisex classic wrap, tan, with pocket for ostomy bag, size L
  • 1 Unisex classic wrap, black, with pocket for ostomy bag, size XL
  • 1 Hollister m9 Odor Eliminator Drops bottle, 8 oz.
  • 1 Hollister m9 Odor Eliminator Pump Spray, 8 oz., unscented
  • 1 Hollister m9 Odor Eliminator Pump Spray, 2 oz., unscented
  • 1 EneMan stuffed toy, emotional support plushie

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“You are imperfect, permanently and inevitably flawed. And you are beautiful.” ~Amy Bloom

I was born with my grandfather’s nose. It appears that strong noses skip a generation. I was generally fine with it, but I must say that I was teased about it in my youth. One day in my senior year of high school, out of the blue, mom asked me if I wanted a nose job. I said “sure.” That was all, and then it happened.

About a month later I was in a dressing room somewhere and stepped into one of those three-segment mirrors where you can see yourself at various angles. It was the first time I really saw my new nose.

And I freaked out. I can picture it like it was yesterday. I looked deformed; I thought it was horrible.

When you look at something now, you have three fields of view. You see what your left eye sees, then in the middle you see what both eyes see, and you see what your right eye sees. It is obvious if you move your eyes all the way to the left, then to the right. What you don’t think about, is you also see the shape of your nose. In my case it became vastly different. The entire shape of my visual world changed.

My profile was completely mangled. My nose went from sort of out then down to sloping down and out. Shaping my face like a muzzle. Or so it seemed.

Here is the only picture known to exist of my previous profile:

And today-ish (that’s me on the left):

I have never given my looks all that much thought. I did not ask for the nose job, although I agreed right away. I absolutely am not vain now. But then when you are a gorgeous 59 year-old Adonis you don’t need to be.

Body image is a person’s perception of the aesthetics or sexual attractiveness of their own body. The phrase body image was first coined by the Austrian neurologist and psychoanalyst Paul Schilder in his book The Image and Appearance of the Human Body (1935). Human society has at all times placed great value on beauty of the human body, but a person’s perception of their own body may not correspond to society’s standards.

The concept of body image is used in a number of disciplines, including psychology, medicine, psychiatry, psychoanalysis, philosophy and cultural and feminist studies. The term is also often used in the media. Across these disciplines and media there is no consensus definition, but body image may be expressed as how one views themselves in the mirror, or in their minds. It incorporates the memories, experiences, assumptions, and comparisons of one’s own appearance, and overall attitudes towards their height, shape, and weight. An individual’s impression of their body is also assumed to be a product of ideals cultivated by various social and cultural ideals. ~Wikipedia

My point?

I don’t want a stoma. I don’t like my tatoos, three small dark blue dots that no one can really see (radiation targets). I don’t like the “X” currently on my belly. I’m not even happy with the four or five other tattoos I have, and they are on the inside of my rectum. No one sees them, except me when I have my head up my ass. Which lately may be a tad more often than I prefer.

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