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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.

“Insanity: doing the same thing over and over again and expecting different results.” ~author actually unknown

I showed up at 8:00 AM for my CT scan. I was told to follow the orange dots on the floor to the proper waiting room, as opposed to the green squares to the MRI waiting room. Yes, even I can do that. After a minute or two a nurse came in with my elixir to drink and asked if I wanted an IV inserted or to use my port. I forgot about my port, good idea! Close to 9:00 I was brought into the CT room, I lay on the table, and spend all of six minutes in the donut shaped machine.

Then I follow the green squares on the floor to the MRI waiting room and yes, the fun begins.

If you have not read about my first MRI experience, with the enema surprise, you really need to read that now. After my nurse practitioner heard about the experience, and then I showed her the post, she (with permission) shared it with the hospital and I got a call apologizing. Hence, make sure you remember my needing to give myself an enema on a bathroom floor, etc. before continuing to get the maximum amount of enjoyment at my continuing perverse adventure.

Again I am the only one waiting in the MRI waiting room. Within a few minutes a nurse (MRI technician?) comes out and I notice she is holding a piece of paper and … wait for it … an enema! She asks my name and birthday, confirms with the paper she is holding and tells me I need to give myself an enema. I specifically ask her where I am to do it and she points to THE SAME FUCKING BATHROOM. I then told her I gave myself one two hours ago at home and she saved the enema for another patient.

So now you should be aghast. The hospital called and apologized that they did the same exact thing twelve weeks ago hence I expected a different experience this time.

Last time I was dejected, mortified, and scared but figured it out. Unfortunately I did not get pictures of that actual bathroom and as the other post says, that is a similar bathroom. This time I was just pissed and disgusted, but I took pictures! Here is the actual bathroom where patients of this world class, big-city, ivy league teaching hospital are expected to give themselves an enema:

 

The astute among you will ask why there is a picture of me over the sink … no, that’s a mirror. It proves I was actually in this bathroom. But there is something the super astute of you have noticed …

But first, ENEMA 101. The result of a properly administered enema is minimally the expulsion of the contents of one’s rectum. It is typical that said expulsion is both liquid and solid. When properly done, said expulsion is done in a toilet. Note that there is a toilet in this bathroom. When said activity is occurring, solid and liquid is falling maybe six inches into water of unknown quality. Due to physics and fluid dynamics the toilet water will splash and soon it will be intermixed with said ex-contents of one’s rectum along with any bacteria, pathogens, sex toys, what-have-you. This leaves unsavory and unknown droplets of liquid on the buttocks of the enema-ee, possibly the back of the upper thighs, scrotum or vulva, and anything else placed within the porcelain ring.

Now that you have the picture (you’re welcome), you understand that the next thing the enema-ee does is reach for the super thin single-ply toilet paper to do whatever cleaning is possible. After a through study of absorption, fluid dynamics, and squeezing the Charmin, you will find that some cleaning does get accomplished and some dirtying of one’s hand(s) and fingers occurs as a result; contaminated with all manner of fecal matter and associated clean-challenged water.

Back to the astute observers reading this. What else do you see in the photos? What’s that you say, something on the faucet?

 

A Post-it® note! Wonderful. Good news? The report on my CT scan? A reminder that I have rectal cancer?

But nooooooo …

So let’s review:

Three months ago I get handed an enema and shown pictures on how to give it to myself. I am told to use this very bathroom, with no place to lie down but the floor. This is so objectionable that the story of this goes from my nurse practitioner to patient relations to some administrator in radiology who reaches out to me to apologize.

Three months later, today, I am given an enema to give myself in the same bathroom. A bathroom that still has only a floor to administer said enema, but the bathroom does have a modification. A SINK THAT DOES NOT WORK. NO PLACE TO WASH ONE’S HANDS AFTERWORDS.

As I said, I gave myself an enema in the comfort of my own home earlier in the day and did not need to be demeaned by the total and complete lack of empathy on behalf of these so-called professionals. I used some soft two-ply toilet tissue followed by a brief, but effective, shower.

Readers of my blog concerning me and Pearlsky are well aware of the fact that I hate idiots. I have refrained from saying that here, and will continue to.

The MRI went fine with respect to the procedure itself. I was actually able to relax inside the machine, let’s just say better living through chemistry is more than just an expression.

We will get the results on Wednesday, in two days.

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“When I wake up in the morning, I just can’t get started until I’ve had that first, piping hot pot of coffee. Oh, I’ve tried other enemas …” ~Emo Philips

[Trigger alert: sarcasm ahead]

Seeing that I am a man’s man, a manly man, a man’s kind of man, I am very nonchalant and totally unconcerned about tomorrow morning’s CAT scan followed by an MRI.

I have no issues about taking an overnight laxative tonight. A self inflicted enema tomorrow morning, no problem! Getting to the hospital an hour early to drink a quart or two of not great tasting something, I laugh in it’s face! Lying in a CAT scan for about 20 minutes, then the MRI …

Before entering the room for the exam an IV catheter will be placed to allow access during the exam for the use of an IV contrast agent called gadolinium. The IV contrast agent will be injected toward the end of the exam and will increase the information obtained. If you have any questions about the use of contrast agents for your exam please contact the MRI department.

Once inside the exam room, a Radiologist or Nurse Practitioner will place a small plastic tube called a catheter into your rectum. A liquid barium contrast agent will then be injected through the catheter and into your rectum and will remain there until the exam is completed.

I am so fucking excited I could just shit.

Why does one have anxiety about a medical test? The test itself will not change anything about my body or health (for all intents and purposes). The fear of the test itself may be from not knowing what the test entails. In this case, I know what it entails; taking a laxative, giving myself an enema, getting an IV in my arm, getting a shot (somewhere), having a catheter shoved up my ass, receiving a bolus of barium via said catheter, and then lying in a tube so small I can’t move my arms for close to an hour. Of course there is no anxiety, I know exactly what will happen.

Would there be fear of the result which some people will know immediately yet I need to wait two days? That gives two days of waiting which always just sucks. But again, that is not too anxiety producing. And whatever my status is tomorrow during the test is what my status is as I write this. The difference is not in my tumor, it is in my knowing.

So what’s the anxiety thing, which of course a man like me does not have?

The CAT scan and the MRI are tomorrow. The flexible sigmoidoscopy exam is Wednesday. The results of all three follow an hour later during the cerberus II meeting. No anxiety there.

What we will learn:

  • Exact location of the tumor
  • The current size of the tumor
  • Has the cancer spread to the lungs (easier to write “the” than “my”)
  • Has the cancer spread to the liver
  • Is surgery even worth doing?
  • Is it true that there is no tumor, but we found Judge Crater?

By the way, Judge Crater disappeared the actual day my father was born, and both events were about 3 miles apart. Hmmmm … and tomorrow, the day of scans, is both my day’s birthday and the anniversary of Judge Crater disappearing. Coincidence? I think not!

Ok, so now that we have totally reasoned away the thought of anxiety or fear we can move on with our life. Oh, wait, don’t know if we can. I don’t know if I can move on with life, but I may know on Wednesday, two days after others know.

I hate this shit. Where’s my medical marijuana …

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It’s not what you write, it’s what they read

When you write a letter, an email, an opinion piece, a blog post, etc. what you write is not as important as what the recipient reads. A recent opinion piece in the local paper was an attack on the school administration yet was mostly read as an ableist piece against students. I tell people all the time, proofread things through the reader’s eyes. (There’s that empathy thing again.)

This goes for websites as well. Especially patient sites. I am using my hospital’s (“my” as in the one I go to, not the other one that I own) (ok, I don’t own a hospital) patient portal and, well, it actually makes my life more difficult than if I did not use it. I know I can be a curmudgeon but hey, I have cancer, be nice to me.

I want to show you what I am dealing with. Keep in mind that I do a good amount of web design but this is not about my thinking I can do it better (and hell yes, I can) but it is about showing issues and maybe this will work its way back to the designers. This blog is anonymous, I do not want to call out the hospital or its IT department in any way. The ONLY changes to these screen shots are proper nouns and phone numbers. Really. And I will do my best to not offer opinions, only facts. Let’s see how that part goes.

Note that I get emails saying …

You have an upcoming appointment with one of your health care providers. Please sign in to the Patient Portal to check your appointment schedule on your Home page.

Here is the important part of the home page. I sign in and see this along with a main menu, etc. but this is the prominent center of the screen:

We (me and you, aren’t you lucky?) are going to look at various parts of this from many points of view. The information it conveys (or does not), ease of use, accessibility, validity, etc. Clicking on the images will enlarge them if you so desire.

Demoralization and crushing of hope

Note that the “Care Team” on the right side of the screen is made up of doctors and providers who I have seen and am working with. It is vital to note, they are not doctors I have not seen, it only shows those providers for whom I am already a patient.

Every time I sign into this site I see my surgeon (extremely highly regarded) telling me that

Colorectal Cancer is the #2 killer …

Number 2 after what? Natural causes? Am I going to die? This is not an advertisement telling others they need to check for colorectal cancer because if you see these words you are already being treated by a colorectal surgeon! WTF. I have colorectal cancer. Pretty much everyone reading those words has been diagnosed with colorectal cancer. Let’s remind me I am dying. And yes, I have read the rest of the paragraph.

Hey, pal, do you know the time?

(Ignore the 9:00 AM CAT scan for this discussion.) I have been told that I have an MRI at 9:30 in the morning. The written notice I received clearly says (bold is in the original) …

… arrive in the MRI department 45 minutes before your scheduled exam start time.

And during the reminder phone call the gentleman stressed that I …

… must arrive an hour before, at 8:30.

So what is the essential time in this case? The patient portal is there for me to see my appointments as the referenced email states. It appears that in this case, the 9:30 AM time is completely moot. That is not when I need to arrive, and if in fact I arrive at that time, they will have to reschedule me (according to the gentleman on the phone).

This item on the schedule for 9:30 is problematic unless I remember to get there 45 60 ? minutes early. How to remember? I cannot write it on the home page to which I am supposed to refer.

I know what you are saying … “Just click for instructions as it says!” Ok, I will, and this opens up:

Well that is not terribly helpful.

But wait, there’s more! What is that in red? Why is there any text in red and what does it signify? And a “CLICK HERE” … seeing that I always do as I am told, I will click yet again for some instructions (but not on the red, that does nothing) and this comes up …

Good. I feel so much better instructed now. I don’t have questions, I don’t know that the time on the home page is wrong-ish.

So what time do I show up?

Who? Huh?

I have the cerberus appointment on Wednesday. Who will be there? Well, it appears the wonderful Dr. Pye will be …


But whatever you do, DO NOT LOOK ON THE RIGHT SIDE OF THE SCREEN SHOT … DO NOT LOOK AT THE “CARE TEAM” LISTING …

Damn, you looked.

Dr. Pye appears to be out of the office for the next nine years, which is actually a good thing since I hope to be alive in nine years and that date, B”H, will be my 70th birthday. She will be my present! But will she be at the meeting on Wednesday? If not, who will be taking her place?

Excuse me, huh?

I know you are looking at the CARE TEAM list and wondering, is there any way to edit the list? Can I add or remove doctors? Of course there is, just look at the bottom of the CARE TEAM column.

Here is it clearly noted that your providers are automatically added to this list “after you’ve had a kept appointment …” I know what a kept woman is (not that I have any experience in such things) and I know all too well what it is to be verklempt, but a kept appointment? Heck of a place for a past participle … And if you click on Edit Providers, you can remove someone from the list but neither add nor change anyone. Is that editing or removing? Definitely not kepting.

Flexible? I can bend in all sorts of ways.

Let’s not forget about my flexible sigmoidoscopy on Wednesday. I need to be there at 12:30 PM for it to happen at 1:15 PM for my 1:30 PM cerberus appointment. You can see that clearly in this part of the schedule …

“All the truths of mathematics are linked to each other, and all means of discovering them are equally admissible.” ~Adrien-Marie Legendre

Most, if not all, web design “best practice” lists specify that links should be highlighted in some way and all formatted alike. The classic is underlined blue text, but that is becoming a relic for many reasons. For accessibility, readability, understand-ability, etc., links should look and work the same within a site. It is simply best practice.

Here is my home page on the Patient Portal with all links (that I can find so far) highlighted.


Let’s see how links are identified:

  • Blue virtual-buttons with white text
  • Bold black text with “(Click for instructions)”
  • Bold black text without “(Click for instructions)”
  • Blue-ish text with no decoration
  • Blue-ish text, underlined

A designer could argue that the schedule listing items are not true links (<a> tags) but are list items (<li> tags) but this is only a partial and weak argument, especially with some having the additional, although somewhat fallacious “Click for instructions” instruction. Five different link-identifying styles? None explained. Simply stating “Click on a scheduled item for further information” would work since all minimally open up to show the location of the scheduled event.

(Here is a fun thing to try … see the handicap logo at the top right of the browser window? It has always been there. Click on it and click on “UNDERLINE LINKS.” Then CLOSE. You will now see four links in my previous paragraph. Didn’t know they were there? Pretty useless having links you don’t know exist, huh? Now undo what you just did or it will drive you crazy.)

Speaking of accessibility

There are Web Content Accessibility Guidelines (WCAG) put out by the W3C Web Accessibility Initiative (W3C WAI) under their tag line “Strategies, standards, and supporting resources to make the Web accessible to people with disabilities.”

Web Content Accessibility Guidelines (WCAG) is developed through the W3C process in cooperation with individuals and organizations around the world, with a goal of providing a single shared standard for web content accessibility that meets the needs of individuals, organizations, and governments internationally.

The WCAG documents explain how to make web content more accessible to people with disabilities. Web “content” generally refers to the information in a web page or web application, including:

  • natural information such as text, images, and sounds
  • code or markup that defines structure, presentation, etc.

The U.S. Department of Education mandates that school district websites be accessible and has several initiatives in this matter. It falls on the Office of Civil Rights to enforce this, and they do.

Section 508 of The Rehabilitation Act compels federal government agencies to make all of its electronic information and technology fully usable by people with various disabilities. This means that websites, software, webinars and PDF user guides, to name a few examples, have to meet specific accessibility requirements to comply with the law. The revised Section 508 refers to the Web Content Accessibility Guidelines (WCAG) 2.0, Level AA.

Although Section 508 as it’s written does not apply to the private sector, nor does it apply to recipients of federal funds, some funding agreements have nevertheless incorporated the requirements of Section 508 as a condition of receiving funds. For example, Medicare and Medicaid rules state that healthcare institutions receiving reimbursements through these programs must make program information “readily accessible” to the public. In the most recent update, readily accessible information is defined as “electronic information and services which comply with modern accessibility standards such as section 508 guidelines, section 504 of the Rehabilitation Act, and W3C’s Web Content Accessibility Guidelines (WCAG) 2.0 AA and successor versions.”

When I run my home page in the Patient Portal through a standard Accessibility Checker against WCAG 2.0 AA I get 15 errors and 3 warnings. Those numbers are a tad misleading because, for instance, there are 92 instances of “Info and Relationships 1.3.1” flagged as errors and 17 warnings. There are 8 warnings of insufficient color contrast.

Ugh.

Let’s do a quick review

  • Depressing information: I have the #2 killer of bloggers and other mere mortals
  • Bad information: Dr. Pye will be at my appointment
  • Misinformation: Dr. Pye is out for 9 years
  • Missing information: Flex sig anyone?
  • Lack of information: When appointments really start
  • Confusing information: Where links are; what is clickable
  • Accessibility: If the hospital has patients with disabilities, this may be an issue

And this is only two information boxes out of many just on the home page.

No, I don’t have way too much time on my hands. I have cancer, you know. The number 2 killer of crotchety bloggers.

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My life is flashing before my eyes

A life review is a phenomenon widely reported as occurring during near-death experiences, in which a person rapidly sees much or the totality of their life history. It is often referred to by people having experienced this phenomenon as having their life “flash before their eyes”. The life review is discussed in some detail by near-death experience scholars such as Raymond Moody, Kenneth Ring, and Barbara Rommer. A reformatory purpose seems commonly implicit in accounts, though not necessarily for earthly purpose, since return from a near-death experience may reportedly entail individual choice. ~Wikipedia (and if it is on the Internet, it must be true)

What the hell is a “near-death experience scholar” anyway? Ok, never mind that …

I have been doing a life review lately, not so much because I have a fucking cancerous tumor in my bowel (have I mentioned that?) but because it need to clean up my life a bit. Yeah, because of said tumor. If When this is over with a happy ending, some things will be cleaned up and behind me. When If it is over with a less happy ending, I won’t be leaving Inanna with a mess. At least I have my porn-buddy for that cleanup.

For many reasons I stopped being interested in my (successful) high-tech company a few years ago. It was around the time of Pearlsky’s incident at the high school, my partner retired, and I was in an interesting relationship with a special education director. I became an advocate at the urging of many and let the high-tech company just ride. I kept the office alive for way too long and have been cleaning it out over the last month or so, about 23 years worth of stuff. I am finding some incredible things (if you are a geek) that partially define who I am. Other things the last few days have brought about different memories.

I found this book in my office and explained to Inanna … In 1978 I was a college student and a registered Emergency Medical Technician (EMT). When the blizzard of ’78 hit (Boston) I volunteered with an ambulance service since school was closed, as was the entire city. I was riding in an army jeep that was enlisted as an ambulance and at one point we were flagged down by a lone woman in the street, around 9 or 10 in the evening. It is a good thing I sat in on the curly-haired-girl’s sign language classes because this woman was deaf. She was pregnant, that much was obvious. My pidgin sign, along with some politically incorrect pointing, got us to understand her water broke and she had some bleeding. That was my first delivery. And, under the category of circle of life, I unfortunately watched a building under the elevated subway line burn in a raging fire that night. Fighting cocks came flying out, and two children, who we saw in the windows, never made it out. Their mother, in an orange teddy, was hysterically screaming while encircled by burly cops and firemen, in snow two feet deep. I was stationed between the first firetruck and the house when a fire hose broke at the coupling and as only one fireman was on the hose, it ended up snaking wildly when he lost his grip and the full force of the water slammed me against a firetruck. It took two weeks to fully recover from the asthmatic bronchitis that followed.

I happen to hear a couple of Carol King songs on the radio yesterday. I turned to Pearlsky and told her that Carol King’s father hated me. Inanna overheard and looked at me quizzically. I explained to her that in my youth I ran a religious youth group and Carol King’s dad, Sidney Klein, was head of the Ritual Committee. Let’s just say we did not see eye to eye on things in the early 1970’s.

Intel developed a computer chip in the early 1980’s called the 8080. They did not really know what to do with it so they sent a sample to every engineer they could find. I got one with a data sheet; at that time I was working on a blood analyzer for Eastman Kodak and teaching at Rochester Institute of Technology. Oh, by the way, never play basketball against a team composed of deaf students. Just say’n. Anyway, I took the chip and in my spare time put together a very simple little computer board, pretty much to prove I could. I did nothing more with it. A couple of engineers at IBM did the same. Well, up until they proved it could work. Then they turned it into the original IBM PC and kind of sort of changed the world. A few more cups of coffee and that could have been me. But I digress … in my office I found these two items. As a geek, trust me, they are really cool.

On the left is the chipset from Intel before the 8008, it is the 4004 (really). The first real microcomputer. I always wanted to see if I could make a system with them, never got around to that pointless endeavor. (Click on the image to read what it says.)

On the right is a block of core memory from an IBM 360. When I was a student the university was upgrading the mainframe and I found this in the trash (yes, a dumpster diver in my youth.) Over four million of those blocks equals one thumb drive.

I have found a trove of old family pictures. Yes, me as a young hatchling, but more importantly, my grandparents and great grandparents. Showing Inanna my ancestors from eastern Europe, some who did not make it out alive, and explaining why my father is one of four first cousins with the same name.

As I do some house cleaning I think about my firearms. All licensed and locked. I had a license to carry in the big city years ago (and reasons to) and was a member of the oldest continually running gun club in the country. Figuring out what to do with my Walther PPK, I had flashbacks of the time I was standing over a guy, my gun pointed at his head, and police from all over the city converging on us … having no clue who I was. It is a great story in one of the most powerful posts I ever wrote, but it made me relive several things, not all the easiest (emotionally) to remember. And I need to find a new home for these.

I have the pins from my surgery when I had a spiral fracture of my tibia in 1971. My high school girlfriend’s picture (porn-buddy’s mom!) and several birth announcements, mine! Every note ever from my pediatrician starting the week I was born in 1958. A great 8×10 of me and Pearlsky’s mom at our wedding (kept face down on top of the bookcase, but nonetheless …).

With two severely disabled children, no nieces or nephews, I have to come to grips that I am the end of the line, so to speak. Whatever I can’t take with me when the holy one, blessed be He (or my tumor) decides it is time, will either go to a museum or a land fill. That’s a bit tough for me, not sure why.

Does any of this even matter? Am I the only one that has a connection to it all? Yeah, I am.

Memories. Connections. Adventures. Almost as personal and lonely as cancer in many ways.

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“Without faith that there’s a world beyond the one we live in, I don’t see how it’s possible to get rid of angst.” ~Robert Smith

Quick review …

At the first Cerberus meeting I met my hematology / oncology doctor, Dr. Pye, along with the surgeon and radiologist. I was impressed with her and very glad she drew the short straw and I was her patient. A couple of weeks later Inanna and I had an appointment with her and learned more, it went very well. I did a bit of research, she is well respected, very intelligent, and everything one wants in a doctor.

My first day of chemo I was to have an appointment with her, but it turned out that she had some medical issues herself and was out for a while. I took this in stride, sort of, even though it was very disappointing. I was assigned to another member of the chemo team, and this doctor, Dr. Chemo2 was very impressive as well. Ok, I can deal with this, but I was still hoping that Dr. Pye would be back for my after-surgery chemo.

Once my chemo-radiation was finished I received a call for my cerberus II appointment, again the radiologist, surgeon and chemologist (?). The scheduler mentioned yet a third chemo doctor and I made it clear that was not acceptable. Why a third? After some studdering she scheduled Dr. Chemo2. That was ok, I liked him.

A bit later I needed a chemo appointment and saw Dr. Pye! She was only back for a short time. We discussed the upcoming appointment and she said that she may be able to be there but was not sure. She checked the 3:00 time. The odds are she would not be around after my surgery though. We agreed that I should see Dr. Chemo2 since he would be stuck with me responsible for my post-surgery care and potential chemo. Dr. Pye would try to attend if it worked out.

That evening I looked in the patient portal, and Dr. Pye was listed! The appointment was scheduled for next Wednesday, 3:00 PM. I was able to choose that time to make sure that Inanna could easily attend as well.

Last week I got a call telling me the surgeon wanted me to have a flexible sigmoidoscopy, a camera up my butt. Ok, fine, and it was scheduled for 12:30 next Wednesday, before the cerberus II appointment.

A bit after I got that call, I got an email with instructions. The email started “Dear Mary,” … that is an actual quote, I did not make up that name, and no, my name is not Mary. Not even close. They actually sent me someone else’s email. I certainly hope a gynecologist does not walk in with a flexible anything …

This is what I knew:

  • Flexible sigmoidoscopy (with or without Mary) at 12:30
  • Cerberus II appointment at 3:00
  • Chemo hematologist: Dr. Pye (if possible) and potentially Dr. Chemo2

And that brings me to today.

I looked in the patient portal to double check a different appointment. I noticed a couple of things …

  • No flexible sigmoidoscopy scheduled
  • The cerberus II appointment was moved earlier to 1:15
  • Dr. Pye was the only chemo doctor listed; it also says, and this is a direct quote, that Dr. Pye is “Out of office through 10/22/2027”

No angst here. I am just the fucking patient with the cancerous tumor and they are changing appointments, canceling appointments and not telling me. And no, it’s not chemo brain. At least not on my end.

Of course it takes three calls to kind of figure out what is going on.

The flex sig (that’s the lingo those in-the-know use) is scheduled at 1:15 but what the portal does not say is that I need to show up at 12:30 so in fact the flex sig is for 12:30; but my butt won’t be violated for 45 minutes. I guess they don’t put that in writing. And, without telling me, the appointment with the three doctors is immediately after the flex sig, so in fact that appointment is listed as 1:15, but is really 1:30, and yes, changed from 3:00. Without telling me. The victim patient.

Actual schedule (maybe) for the day:

  • Flexible sigmoidoscopy (with or without Mary) sometime between 12:30 and 1:15
  • Cerberus II appointment at 1:30
  • Chemo hematologist: No clue even though it still says Dr. Pye who is out for the next 3370 days!

So, when the scheduler said:

how about scheduling the flex sig for 12:30?

and said NOTHING ELSE ABOUT THE OTHER APPOINTMENTS what she really meant but DID NOT SAY was

we can make the flex sig for 1:15, change the three doctor appointment to 1:30 and need you to get here at 12:30.

Never said any of that. Did not put that in the patient portal.

I don’t know which chemo doctor will be there, Dr. Pye had said the 3:00 time was potentially possible. Did they check with her? That was weeks ago before listing her as out until 2027. If it is not her, will it be Dr. Chemo2? Are we back to the mystery doctor behind door number 3? If a third doctor shows up I may lose my shit. I have a relationship with these two, for what that is worth. And since my life is in their hands, it is worth a lot. To me. The fucking patient. I am already really not happy about this. I don’t need more angst in my life, thank you very much.

Inanna now needs to take time off work to make the appointment. And it is a damn good thing I happened to look, otherwise she would have missed it and that is not a minor thing.

  • Who changed the appointment?
  • Why was it changed?
  • If it changed because of the flex sig time, why was I not told when I agreed to the 12:30? (This is the same shit they pulled when my radiation was scheduled for daily appointments and no one told me the relationship to the weekly chemo appointment. That’s another rant for another time.)
  • Why does the patient portal say nonsensical things?
  • Who the hell is Mary and does she have my email? Will we be in bunk-cots and have dueling flex sigs?

Color me not happy.

Seriously. This one will be keep me up tonight. Is it too much to know what doctor will be there? Am I asking too much?

If you work in a hospital, IF YOU WORK IN MY HOSPITAL, watch this four minute video. Really. Please. As if my request means anything.

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“Anyone who attempts to generate random numbers by deterministic means is, of course, living in a state of sin.” ~John von Neumann

Did someone say random …

  • When I walked into that first radiology appointment for my tattoos, there were three people in the room. They were never introduced, never knew their names or jobs. It became obvious one was a student, possibly a medical student, not even an intern. I don’t know. Hope she enjoyed the show. I found that rude.
  • After feeling a funny sensation I finally asked what that was. It was a Sharpie marker. If you are going to write on me, at least tell me if you are not going to ask me. That really was wrong. Period. And rude.
  • If you have the ability to pipe in music, or stream anything during my radiation treatment ask me what I would like to hear and mark it in the notes. One tech asked me once, and remembered. Too bad they changed often and no one else asked. He nailed it though, thank you.
  • There is nothing like a hand written card. Really.
  • I like reading the news on my phone or device. I am finding that now I will much more often read a paragraph or two and just sweep it away thinking “why am I wasting me time reading this?” That is not a comment on the news itself, just my consciousness that life is too short to waste.
  • Running a group that consists of an overwhelming percentage of women caregivers is a good thing when you are diagnosed with cancer. It helps if they like you. I have no idea how to thank them even though they say they are thanking me.
  • Pearlsky is starting to realize that something is going on. I need to spend more time with her, have to figure that out. Sooner rather than later.
  • I got a call yesterday that I need to get a flexible sigmoidoscopy. I simply asked “Is that another camera shoved up my ass?” “Basically” she said. It’s not so bad, no anesthesia or anything. Since the tumor can be felt with the doctor’s finger, he is not going very far. Something to look forward to.
  • Most side effects are pretty much gone, but the exhaustion. I don’t get it … my mind is fine, but my body is really tired. I look spaced out at meetings but am fully in tune.
  • Dr. Pye, my oncologist-hematologist is wonderful. I really like and respect her. At work she works with patients such as me, trying to prolong my life if not simply save it. At home, she is praying for her little boy who was born several months early and is still in the neonatal ICU. She is pretty much exactly middle age as well (does not look it! and that is purely numeric). I think about that and my respect, empathy, and appreciation grow. I am keeping her boy in my prayers.
  • At this point, my life is in the hands of the surgeon and he is up to bat in seven weeks.
  • Surgeon’s have interesting personalities. Inanna has a theory … it is because they cut people open every day. Yeah. I think that makes sense.
  • I think I will have an affair with a former playboy model and not cover it up. Or I hear good old Stormy is getting divorced. Wonder if this old curmudgeon has a chance. I do have a glowing penis from all the radiation. Sort of. Oh, wait, that’s my personality that’s glowing. Never mind.
  • If When I get to the other side of all this crap, alive, I will probably be a different person in some ways. I don’t think major ways, but yeah, different.
  • My Amazon wish list (in case I just can’t wait any more):
    • X-ACTO Knife set
    • Selfie stick with mirror
    • Rectal speculum
    • Bullet
    • Krazy Glue
    • Disposable absorbent blue pad
    • Bio-hazard zip lock bag

I wanted to end this random thought post with a random video in my Youtube collection for absolutely no reason.

Eight years ago there was this thing where people would take a clip from a foreign movie and add subtitles that were, well, not exactly what was being said. A very popular target was a clip from a movie about Hitler. At that time I was blogging about incredible problems I was having with a Durable Medical Equipment (DME) company and Pearlsky’s wheelchair. They actually had to deliver it three times to get it right. A $7000 wheelchair, finally delivered by the vice president in person. Being a geek at heart, I jumped on the bandwagon and made a video clip from that same movie. IT IS NOT POLITICALLY CORRECT. It has what some people will consider BAD words (concerning disability, not curses). It was made when I was a blogger in the disability world. If the concept of making fun of Hitler bothers you, if seeing Hitler using words that are not politically correct bothers you, then end this post now! Otherwise … see what Yiddish he knew …

Maybe he needs to rant about chemo-radiation next …

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