If you came here from DisabledDaughter, click here
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.

“In times of great stress or adversity, it’s always best to keep busy, to plow your anger and your energy into something positive.” ~Lee Iacocca

I woke up this morning thinking “Did I really end the last post by saying I had a ‘pink lace man-thong’?” and checked; yes I did say that. Then I wondered if there even is such an item. That’s why there is a thing called Google I guess. DO NOT CLICK ON THE FOLLOWING LINK if you are faint of heart … it is a link to Amazon (of course). THE LINK NOT TO CLICK because some things can not be unseen. Ever.

Anger is a tough issue. People tell me that I have a “right” to be angry now. Or that it is natural. I don’t think that I am particularly angry, at least not because of the cancer per se.

In 1989 I was lying on my bed watching TV and my then-wife came into the room. We had a “discussion” about something and I did get angry. I had the remote control in my hand and I threw it. Not at her, actually in a very different direction and it hit the ceiling near the wall across the room. That was just about 30 years ago, I remember it well. And I know the exact spot the remote hit.

and zoomed in …

These pictures were taken today. You may notice in the zoomed-in image on the right a faint outline around the marks … that is from painter’s tape placed over them because I will not allow them to be removed or covered. And the ceiling is actually white, so much for cell phone cameras.

The marks have lasted longer than the marriage did (and longer than the remote) but it was a good marriage (went on for 10 more years). That day was the last day I truly got angry. I look at the marks every so often to remind myself that anger is ugly, there are better ways.

I blogged about the cerberus II meeting of 16 days ago. Here is some other background that I don’t believe I have shared.

At the original cerberus meeting I asked if there was a chance that the surgeon would open me up, see that the cancer had spread and just close me up. He said:

No. Once you are on the table this tumor is coming out.

For whatever reason that made me feel ok. But, at a later date, when I was told I would get an MRI in August (the one from three weeks ago) I asked “why?” I was told that those results would tell us more about the tumor and if surgery was still a viable option. I don’t believe I shared that with anyone but it really fucked me up. This was before the start of chemo-radiation. I had the six weeks of chemo-radiation ahead of me, several weeks of “healing” and then that MRI to see if the cancer spread to the point of determining that surgery would not be an affective action. Every time that popped into my head was hell. I was very nervous about the CT and MRI scans and the results. I did not share my feelings with anyone, there was no point. I would not have felt better and they would most likely feel worse.

You can re-read the post about the cerberus II meeting but now you are aware that I was very tense about it. I was going to learn the result of the MRI and knew that there was a chance of hearing some very bad news. I arrived on time and they told me to sit and do nothing, the instructions for that day were bizarre and logistically impossible, etc. When they realized I was not happy, as I wrote, a nurse practitioner (NP) came in with someone else. It appeared that she was in some supervisory role but in my state I did not catch her name. Neither did Inanna who was sitting with me. The NP asked about some of the screwy things (my words) and photocopied the instructions I brought with me. She then asked me what else she could tell me.

I was angry. So much was screwed up and here I am, desperate to know results of my scans, it is past the time of the actual appointment to start, and I feel myself losing it. I glanced over at Inanna a couple of times and she was looking down. She has never seen me like this. Don’t get me wrong, I did not raise my voice, nor did I say anything inappropriate. Every filter in my brain was on DEFCON 1. Yet my anger was palpable, probably from 20 paces. I looked right in her eyes and all I could come up with as to what else she could tell me was the truth … “Did my cancer spread? Did the tumor shrink? Are we still having surgery?” I knew she would not answer any of these. She said she would go get the doctor.

I was livid. I was literally scared for my life. I knew NOTHING but I am sure she did. I know the doctors did. And there I sat.

As we waited I asked Inanna if I was out of line. She assured me I was not but that my anger was obvious.

It’s been thirty years since I was in that state. I wanted to throw something. I wanted to rip into the staff. I wanted to know how close I was to dying. All I wanted to know was what they knew.

A couple of days later I wanted to reach out to that nurse practitioner, but I did not know her name or even if that was really her position. I would have apologized or explained, I felt bad that I was in that state. Again, I was sure that I did nothing “wrong” yet I hoped to connect.

It didn’t happen. Until two days ago.

EMAIL this post to a friend:

“Sometimes you have to look reality in the eye, and deny it.” ~Garrison Keillor

I was all set to write an uplifting, positive post … and then I got an email. “The clinic note from yesterday’s doctor visit is available in the patient portal.”

If you remember (and even if you don’t) I needed to change doctors, etc. because of a change in insurance. I have a new primary doctor and mainly interact with his fellow. For now this is fine, the fellow is a young guy, very nice, knowledgeable, etc. This was my second time seeing him and he obviously reviewed my record. And just to be prepared, I brought along some of the paperwork on the needed preparation for surgery.

To see his notes I needed to sign into the patient portal, so I braced for it, and yes, it is still there …

Whatever happens, do not let the patient forget that they have the NUMBER 2 KILLER growing in their butt!

I then find the clinical note (the instructions in the email on what to click on to see it are wrong; are you as shocked as I am?). Here is the first part of it I would like to share:

As stated at the end, I am taking duloxetine as it is effective for peripheral neuropathy and depression. I have managed any depression without meds but with the added stress of having rectal cancer, well, this helps.

During the visit I guess I may have mentioned my “frustration” with the hospital’s healthcare system. I may have shown him the paperwork I received. I may have been a bit cranky. But I did specifically ask him about this:

and this

And as he so eloquently documented for posterity in his note:

The prescription instructions have confusing instructions for each medication. We did our best to decipher them.

And he’s a doctor! Yes, we did our best … and failed. He promised to contact the surgeon’s office and ask “what the fuck?” … well, that is my interpretation.

Then I scrolled down to see what else is in my clinic note. Oooh, social history! Being the social animal that I am …

I realize that I am cranky, curmudgeonly, expect people to be competent in their jobs, and just an all around nice guy but that aside, some of these items are a tad problematic.

“Tobacco use: Never smoker”  That is absolutely correct. I was asked if I ever smoked and I said “never” and he notated “never.”

Yet, when asked “Do you have multiple sex partners?” I responded “no” yet the notation is “denies.”

When asked if I use “recreational drugs” and I said “never,” once again the notation is “denies.”

What does Google have to say about this?

And yes, I get it, deny can also mean declare untrue but its connotation, as shown by being the primary definition here, is more of refusing to admit.

“Sexual activity: Present”  I was not asked about “sexual activity” and am perplexed by the notation of “Present.” Does that mean I have sexual activity with the present I was given (a few years ago, there was this gag gift from a couple of women friends … but I digress)? Or does it mean that I was having sexual activity in the place where I was present? And / or having it at the present time, in the present place, with the present I happen to keep in the car?

By now some of you are screaming at the computer screen wondering why I am avoiding the “Sexual orientation: Female”  item. The best I can figure is that yes, I am sexually oriented towards females. Or yes, I prefer female orientals to males (don’t go all “inappropriate-wording” on me, they wrote it, not me). Maybe during the physical exam he noticed the pink lace man-thong I was wearing and got confused. And no, I was not wearing a pink lace man-thong.

It was in the wash.

EMAIL this post to a friend:

“If our condition were truly happy, we would not seek diversion from it in order to make ourselves happy.” ~Blaise Pascal

I have really been trying to distract myself from the fact that I have cancer. And from the fact that the support staff at the hospital increase my angst and make my head want to explode.

I got a haircut the other day and once again I cut it shorter than my typical length. The cut about 6 weeks ago was definitively short for me (the pictures you have seen) and this one is even more so. People have asked me why …

No one knows what my daughter understands. We don’t know how she knows who is who, is it that she has a high congnitive level? Does she recognize my voice? Does she recognize me by my hair, the contrast in colors around my face? There is some proof she knows my voice, and my footsteps on the ramp coming up the to the front door. I have never wanted to take off my beard or drastically change my appearance as I have seen little kids react when their parents have done such.

I also know that I will be losing my hair in a couple of months. Cutting it shorter and shorter, I hope, will get me and my daughter accustomed to the new look to come.

This weekend I took on a project to distract from life and to help my school district. I made a film inside a new school building and put it all together with opening scenes, editing, credits, etc. I know, a lot of people do this all the time, but there is a difference … I had no idea what I was doing or where to even start. It took about 16 hours (learing Avidemux, Handbrake, Powerpoint, Youtube, and more) and I made the video, just waiting for the superintendent to approve it so I can release it.

Because the audio did not record well, I turned it into a silent movie! It was fun and a good exercise for my brain as well as a diversion from life. This evening I used all my brand new knowledge and made one about me and my daughter (using pre-haircut video).

It is only 2 minutes and 2 seconds, but if you watch, watch to the very end, and do have your volume turned on.

Hope you enjoy it as much as I enjoyed learning how to do this, and doing it!

EMAIL this post to a friend:

Bad days always end at midnight

Just a crap-ass day. Nothing all that specific, a couple of highlights here and there, but generally, a real crap-ass day. I want to be healthy and I want to have other things to worry about.

As I try to figure out what bothers me most, I get more bothered! Yes, ultimately the fact that I have cancer and the outcome being unknown sucks and bothers me. But actually I can deal with that as well as one can.

The question comes up, am I doing all I can for myself? I think so, but am I? Am I letting myself down?

I looked up my doctors on the Internet when all this started. The surgeon is a good as it gets, period. The oncologist and radiologist are both very highly regarded as well. The group, I am told, does more colorectal care and surgery than any other team in this big city, and that is saying a lot. So, mostly by luck and default, I have no worries or concerns about the doctors.

As we know, I have big concerns about the support staff and find myself doing some research to understand the protocols and make sure I am following the right set of instructions (the pill bottle? the oral instructions? the written instructions?).

My ex-wife has a friend, Sue. Sue is highly educated and a very nice woman but she does not appear to have a lot of “life smarts” or maybe common sense. She would do things that would drive me crazy. I knew of the things from my wife and never ever would say anything to Sue but would shake my head. A couple of times I found myself in situations where I, personally, was not sure exactly what to do. I learned to think of it this way … the Sue Test.

What would I say if this was Sue?

For instance, if I went to a restaurant that I really wanted to try, but for whatever reason it looked dirty to me or just “off” and I was not sure if I should sit and eat or just leave …

How would I react if I was told that Sue sat there and ate?

It is my mental way of looking at my own situation from the outside and putting my own values on it. I found it helpful and no, it is not mean to Sue. And in that scenario, if she had her young boy with her, I would think she was crazy.

What would I say if Sue was having these issues with her hospital care?

When you use a browser to surf the ‘net a good amount of information is actually sent to the web site itself. Your browser (Chrome, Safari, Firefox, etc.) tells the web site, among other things, who your Internet service provider (ISP) is (e.g., Verizon, Comcast, Rogers, AT&T, Cox, etc.). Some of the information is very useful, like the size of the screen the user is using. As a web designer I use this to modify the page sent to that user to look best on their size screen.

Some larger organizations have their own in-house ISP. This is true for many government agencies, universities, and hospitals or medical organizations. Because of this, I know that someone (or several people) from my hospital do at times look at this blog. But there is something much more interesting …

A couple of other medical centers have also looked in the last few days. They are using the “topics” picker on the top of the right hand side and looking at the Patient Portal archive page among others! There have also been hits from two government agencies. More interest from other medical providers than mine.

As predicted, I have not heard from the Director of Strategic Initiatives again about the Patient Portal. I am shocked! Ok, no, I’m not.

I needed to use the portal again. What’s that you say? Am I a masochist? A glutton for punishment? No, just a poor schmuck with a fucking cancerous tumor up my ass.

I know I need to see the wound nurse to figure out the best placement for the ostomy and that may take up to an hour. Then I need to sit on my ass for an hour for a 5 minute Pat-preadmission testing appointment. At least it is not a Mary-preadmission appointment; my name sure ain’t Pat. A 5 minute appointment? Really? A sobriety test takes longer than that (so I am told).

Where do I take the enema? (kidding) (I hope)

EMAIL this post to a friend:

“Sometimes I feel like I never actually make any of my own. Choices, I mean. My entire life it just seems I never…you know, had a real say about any of it. Now this last one, cancer…all I have left is how I choose to approach this.” ~Walter White

Of course there are good things to report.

  • I am still alive
  • Nothing particularly hurts anymore
    • not my nuts
    • not ejaculating
    • not urinating (well, mostly not)
  • ” … flexible sigmoidoscopy which demonstrated a persistent ulcer but not a large mass indicating a fairly significant response to therapy. ” ~surgeon’s progress report
  • ” …  tolerated the treatment well …” ~ibid, bodes well for chemo post-surgery
  • A wonderful friend brought over some great homemade cookies. Her instructions were to eat three a day, one in the morning and one in the evening.
  • The evening of the day I was originally told I had cancer I met a woman I was working with at 5:30, before our 6:00 meeting. She was grabbing Chinese food, offered to bring me something, and I simply said “surprise me.” Having no idea of my colonoscopy, my previous fast, my clean colon, nor my cancer, she brought me a half-dozen killer-spicy wonderful pork dumplings. They were great. The next time a doctor actually went “in” and looked, the tumor was gone, replaced with an ulcer! (see 3rd primary bullet above) I credit Ms. Nyet, 100%
  • Number of unique IPs reading this blog: 
  • I am emptying out my high tech company’s office, including a fair amount of office furniture in great shape. I could not find any takers and was days from simply filling a dumpster. Then my town’s fire department saw my notice, and is taking it all, gladly, for new training rooms. A perfect match at a perfect price, free.
  • As I am “putting my affairs in order” I keep finding out about affairs I did not know I had. Like the $5000 in unclaimed funds the state had in my name. Sheesh.

EMAIL this post to a friend:

“’Email is the scourge of our age,’ said Silvia. ‘Email and cancer.’” ~Olivia Sudjic

Thinking back on the cerberus II appointment, it was mostly good news. There was the one issue of a single new lymph node that was enlarged. In the midst of the meeting I did not question that, but on the way home I wish I had. So I signed into the patient portal and went to the email section.

I sent the email to both the surgeon and the radiologist since they were the two in the room and both had commented on said lymph node. Again, only names are changed:

Message Date/Time: 8/8/2018 7:07 PM
To: Hunter, John MD;Roentgen, Wilhelm MD
Cc:
Subject: Follow up about lymph node
Doctors:

It was mentioned during today’s meeting that except for one, all the lymph nodes shrank and that is good. One, I believe “above” the rectum, was enlarged.

What does this mean for me? Is it ignored for now? Will it be removed during surgery?

Thank you for your time today.

Simple enough not too long, the answer I would expect to be short and simple. This is what I received:

From: Smith, Sheron admin
Message Date:8/9/2018 7:36 AM
Read Time: 8/9/2018 8:56 AM

Good Morning,

that lymph node will come out at surgery and we will see what it is.
It doesn’t mean anything one way or the other until it is out and in the hands of the pathologist.

Best Regards,

T

I have no fucking clue who this person is nor why an “admin” is responding. Especially one that does not know the rules of capitalization. And the “we”? He or she will see what it is and help make a decision? And what is with the signature of “T”?

To which I had a simple reply, and yes, I deleted the “the fuck” part of the question.

Message Date:8/10/2018 8:27 PM

Who are you?

We are back to the empathy part of the equation. Let’s say a big-city-top-rated-doctor had her own medical issue. She was dealing with something out of her field … maybe breast cancer. She had a question for her doctor and sent an email, and the response came back from an unknown administrator. Would that be acceptable to her do you think? Or the top administrator of a hospital, the chairman of the board, would they accept an unknown non-medical person answering such a question?

I understand time pressures, I understand pain-in-the-ass patients, I understand bombardment by emails. I don’t understand the lack of a simple …

Hi. I am Dr. Hunter’s admin. He asked me to pass along that …

But noooooo, I am left to follow the advice or knowledge of an unknown admin who, for all I know, is in charge of writing directions for prescription labels.

EMAIL this post to a friend:
Accessibility by WAH