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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.

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)

“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 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.

I love a good non sequitur

What follows will appear to be a non sequitur but it ain’t (you can skip this first part if you want) …

My dad was a great guy. A lifeguard who, at 18, spotted my 15 year-old mother, fell in love and was with her for 62 years (and in some ways beyond); a college football player (proclaimed “fleet-footed” by the city’s newspaper); earned a degree in physical education; a fighter-bomber pilot and captain in the Strategic Air Command, and a long time drug pusher. Well, let me explain that last one. Dad joined Stuart Pharmaceuticals around the time I was born and he traveled around interfacing with doctors (a “detail man” now known as “pharmaceutical sales representatives,”  or simply “drug reps”). Stuart was a division of Atlas Chemical Industries which in turn was bought by ICI Americas Inc. (1971), which then partially de-merged into a new company, Zeneca (1992). That did not last long; Zeneca the merged with Astra AB to form AstraZeneca (1999). Dad stayed along for the ride, starting as a drug rep, ending up in charge of all domestic drug sales by his retirement. The eight-year mark of his ultimate retirement is coming up in November, I still miss him very much.

Dad was the first person to ever sell the antacid Mylanta. During the early 1960’s Dad was working a pharmaceutical convention. It was a Sunday, the last day of the trade show; Mylanta was to be introduced as a product the next day. Dad called his boss and got permission to talk about it that last day, and he did. Personally I think that’s kind of cool. It is not so great knowing that people’s ulcers, the primary drive for Mylanta sales, are what paid for my college, but it did work out well for me.

During his career, Dad was involved with many products including but not limited to Mylanta, Propofol (aka Diprivan a very common anesthetic), Tamoxifen (aka Nolvadex – breast cancer treatment),  and Hibiclens (skin cleanser and antiseptic). It is the last item, Hibiclens that makes all of this pertinent and not a non sequitur. Really.


Hospitals are doing all they can to prevent infections, especially when surgery is involved. One way to do this is to ensure as sterile a surgical field as possible. Many are asking patients to wash with Hibiclens, or a generic version, the night before surgery and the morning of. It is easy enough and is proven to be effective for at least 24 hours.

During college I found that many deodorants caused me rashes. I tried an experiment and found that using Hibiclens twice a week (I did have access to the occasional sample bottle) would actually be most effective. I had the sterile-est underarms on campus. I have used it over the years and it works extraordinarily well.


During the preparation talk, the nurse mentioned showering with Hibiclens the night before, and the morning of surgery. She indicated that there was a bottle in the blue plastic bag she brought with her. She then went on to explain how to use it …

Use this to wash between your neck and your hips only. Do not wash your head, groin or limbs with it. Shower with it the night before, and the morning of your surgery.

I asked specifically if I could use it on my underarms and upper arms and she responded …

No, that is not where your surgery is. Only from your neck to your hips, not your limbs.

I knew better than to argue or continue this conversation. It is, actually, important to not get it in your eyes or your ears, but that is about it.

Luckily this is all it says on my (her?) checklist:

Good thing I was listening carefully since the written information does not have the dire limb warnings.

At home I look in the blue bag she gave us and there is a piece of paper wrapped around the bottle of surgical soap. Here is what it says:

Now we have some real instructions we can work with.

Ok, I got this. Keep it away from open wounds. Don’t use if you are allergic to it, and do not use on your head, face or vaginal area. The head and face warnings are because of the danger of getting it in your eyes or ears (which is a serious concern with the primary ingredient CHG). The importance of keeping it away from your vaginal area is because Hibiclens will stain the sheets and the closest thing to “my” vaginal area is usually still in bed when I shower. (Using chlorine bleach on fabric that has a Hibiclens stain will cause it to turn brown and be permanent, just saying.)

Yet another warning about eyes, ears, and they add your mouth (note, the active incredient, CHG, is also in Peridex, the dental mouthwash). It is highlighted that if you get it in your eyes you should rinse thoroughly with warm water. If you get it in your ears, mouth or vaginal area I guess you are just shit out of luck and there is nothing to do.

And finally we have:

Right. Got it. “Gently wash your entire body … wash the rest of your body …” What about my limbs? Are they included in “entire body” or are they part of my out-of-body experience?

“What does the manufacturer say?” Glad you asked:

The “meninges” is the stuff that surrounds your brain and spinal cord, minimal chance of getting the soap in contact with it, but no one warns you for that! “If your brain or spinal cord are exposed, do not wash them with this product.”


To get serious, yes, I get it. This is just about soap and washing. It is very important for infection control yet a simple thing to do. What I find incredibly maddening is the inconsistency between written directions and oral directions, and even between two pieces of paper with what should be the same directions. The previous post is about the medication directions and how they are non-sensical and contradictory. We see the issue here as well. I do not understand this. Why would the nurse specifically tell me I cannot wash my limbs and underarms when in fact of course I can? Again, what or whose instructions do I follow?


Craig

“By failing to prepare, you are preparing to fail.” ~Benjamin Franklin

Step one in preparation for surgery … discussion with some nurse who comes into the room with a packet of information and a small blue plastic bag.

I am told that four prescriptions have been sent to my pharmacy. She has in my packet the actual order that went to the pharmacy and I will show a scan here, simply changing my name and pharmacy address (I love the font I used, but then I am old enough to know what it is … all other is a direct scan).


As mentioned in a previous post, the directions on the neomycin make absolutely no sense to me …

  • 2 tablet(s) by mouth once a day
  • Take 2 tablets by mouth at 5pm, 6pm and 11pm the night before your surgery

Huh?

But what I did not mention was that bizarre instructions seem to be the norm …

This is a medical order, I need to do what it says, not what I think it means. I read this to say I take one tablet three nights before surgery. It does NOT say “one tablet at bedtime for each of three nights prior to your surgery.”

Along with this medicine order, I received this:

This sort of clarifies some issues, but maybe not. I still really want my actual pill bottles with the instructions on them to have the same instructions because that is what I will be looking at. I don’t know which are the proper instructions. But let’s continue a bit …

All items on the list are checked off so I assume I did them already. Cool, I can go home now.

Why are there checkboxes that are checked? Is this Mary’s list? The list contains this item (hand writing is that of the nurse):

Zofran? What the heck is that? There is no Zofran on the prescription list (look up there ↑). By arduous process of elimination I will guess that it is the same as “ondansetron HCL” …

No, that can’t be it, the instructions are entirely different. One every eight hours if needed is not the same as “30-60 minutes prior” or is it? So if Zofran is ondansetron then the instructions totally conflict. If it is not, then what is it and how do I get it?

Have they ever done this before? Am I the first patient with rectal cancer? The first to ever read the packet? Is this confusion intentional? I am the only one to ever notice? What would chairs look like if our knees bent the other way?

It must be the cancerous tumor in my butt making me stupid … because I feel really stupid. I can’t even follow what should be simple directions to take medication. Not that I can’t follow them, I honestly don’t know what they are. Do I follow the bottle as I have always been told? Do I just go back to my fetal position and stay there until after surgery? Life (and potential death) is hard enough, why are they making it harder? Seriously. I am scared and this does not help.

(End of part 1 of prep instructions … and spoiler alert, it does not get better)

“Empathy is the starting point for creating a community and taking action. It’s the impetus for creating change.” ~Max Carver

At the cerberus II meeting I mentioned my dismay at the patient portal. I forget exactly who I was speaking to but they made it very clear I was preaching to the choir. I believe that. I also believe that none of the designers and coders on the project have had any significant illness and needed to use the portal.

Today, out of the blue, I got a voicemail. Not sure why my phone did not ring, but that’s ok. Here is the transcript:

Hi, this is Susan calling from the patient portal at the medical center. I was just giving you a call to assist you with the patient portal. If you are still looking for assistance  or have any feedback you can feel free to send us an email. Our email is patient-portal@big-city-hospital.com. Have a nice day, bye.

Ok. Well, someone ratted me out. The only question I have is “Aren’t you embarrassed by your site?” but alas, I did not get the call and she did not leave a number (caller-id was an outgoing number only). So I decided to write an email:

Someone (Susan?) just left a voice mail saying that if I am still having problems with the site, or feedback, I should send you an email. Unfortunately she did not leave a phone number.

If you want feedback, you can look at this blog post, that talks about just a small portion of the issues with your site. You will see that names and phone numbers have been modified because my intent is not to call out your institution or your IT team.

https://disableddad.com/its-not-what-you-write-its-what-they-read/

That was sent at 11:20 this morning. I noticed in the back end of the blog a couple of hits directly on the blog post from the hospital, around noon time. Then another at 5:01 PM.

Then this arrives at 5:12 …

I wanted to thank you for your email and incredibly valuable and timely feedback. We are currently planning a redesign of the patient portal and your blog certainly helps my teams efforts. Through this project we will work with the technical and operational folks to resolve the inconsistencies you have documented.

Please feel free to reach out to me directly if there is anything else you would like to discuss related to the patient portal.

With appreciation,

Alice
Director of Strategic Initiatives

Interesting, and it appears someone does care, kind of. I end the email trail (at least for now) with this response …

My goal with the blog is not so much as to give your institution feedback (since when I have tried in the past it was futile) as to vent my frustrations and let other cancer patients know what may be ahead. As you saw, I do not call out whose website it is. Much of the blog, unfortunately, is turning out to be essentially feedback for the hospital as you can see in today’s post and that is a tad frustrating.

I am going to turn around your last line and say … if there is anything else you would like me to discuss with you and your team, feel free to reach out. I have designed many websites over the years, taught computer engineering at a local university, etc. and am more than willing to share, but ultimately I don’t know how much time I really have left in the global sense; I am not into wasting it. But trust me, you want to know something (feedback, etc.) I will absolutely love to share. Or keep reading the blog, plenty more frustrations, many around the built in email system.

Enjoy the weekend, I greatly appreciate your note, and again, will assist with feedback or whatever as long as it will really be useful.

I am looking forward to see what happens. Let’s take bets on if anyone will want to speak to a cranky old blogger with cancer up his ass who may actually know something about something.

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