Disabled Dad

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

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?

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)

I started the blog about me and Pearlsky, DisabledDaughter, for several reasons. Many people mentioned that I needed to write a book about my life with her, I needed an outlet, and I wanted others to know what it was (is) like. I succeeded. I received many emails from other parents with severely disabled kids that thanked me (often profusely) for saying what they were thinking; they believed they were alone with those thoughts. I found the blog to be personally cathartic, a great outlet. And because of who I am, helping others also made me feel good, useful.

When diagnosed with rectal cancer, I knew I needed an outlet, hence this blog. My intent was solely the same, personal catharsis and sharing information. The anonymous part, I learned previously, is very important in allowing me to speak openly. This blog is a bit less anonymous, I guess age has made me less worried about what people know.

Unfortunately, this is turning into a bitch session about the hospital. That pisses me off, actually, but it is a vital part of the story. My life really revolves around the fucking tumor in my butt. And everything about the tumor is tied to the hospital. The hospital and doctor’s orders are as much a part of the story as my fears and pain are.

The really fucked up part is that the hospital staff, OTHER THAN MY DOCTORS THEMSELVES and one or two nurses / nurse practitioners, are the biggest problem I have right now. It is incumbent upon me to manage my own health care. I actually am in the position where I must pick and choose what instructions to follow since I am given contradictory ones. So I share. I am sharing my fears, my pain, my frustrations. But I did not want this blog to be anti-my-big-city-hospital. I keep it anonymous because they are not the point, but they are the primary cause of my angst. I can deal with a cancerous tumor better than I can deal with getting contradictory crap-instructions.

My next post or two will talk about the pre-op instructions I have so far. So not to be much of a tease, here is a preview, again with apologies …

This is a scan from the prescription sent to my pharmacy and shows the exact wording on the bottle:

There are six pills. The instructions are:

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

Okay then …

I am not sure why the hesitation to have “2” force the word tablet to be plural, but I digress. How do I take 2 tablet(s) once a day AND take 2 tablets at 5pm, 6pm and 11pm the night before surgery? Those two instructions are direct contradictions. If in fact they are not contradictions and if in fact they make sense, this native English speaker with multiple college degrees does not understand them so they may be correct, but it is still a problem because I don’t know what the fuck this means.

I guess if sundown that day is between 5pm and 6pm then I can take two at 5pm because that is a day, and then two at 6pm because that is erev surgery (evening before surgery, some people believe a “day” starts at sundown) and that will in some way allow the 5pm and 6pm doses to be different days. When it gets to be 11pm it will actually be the next day somewhere (I can call my buddy in Australia, I think it will be the next day there), so with the international dateline taken into account, and channeling his time zone (I would rather channel his youth and rugged good looks but that would be silly) I can rationalize the third dose being a different day. But then I violate the “night before surgery” instruction, so that is moot. Maybe my good friend Steven Hawkins would have a solution to these instructions, but unfortunately he is gone and wouldn’t it be embarrassing if he too was baffled?

What is that you say? Reach out to the doctor? I can’t. If I send an message specifically to the doctor via the patient portal, a nurse answers the message. And at times it is the nurse who gave me the information to begin with. There is no way to get in touch with the doctors directly. I have tried, and failed.

Yet again, it is up to me to manage my care and decide which instruction(s) to follow.

The best I was able to piece together was that I was having a flex sig today (visual inspection of the tumor) and a meeting with the three doctors afterwards. As I have stated, times were changed without consulting me, I did not know which doctors would be there, the patient portal had it all wrong, etc. But I need to do this if, in fact, living is more important than dying.

I really tried to start the day fresh, new. I was going to get good results, no enemas in parking garages, etc. Good start, good attitude, good god … So I look up the flex sig email and check the portal to piece together when and where I need to be.

Here is the email telling me about the flex sig, and again, it said Mary, not my name, but another followed, all the same words, exactly, except with my name (highlights as in the original):

And the patient portal for today:

As you can see, both say the same doctor at 1:15, the surgeon. But the locations are on different sides of the hospital campus. That can’t be. So I call his office. I ask what appointments I have with the doctor today and they tell me just the 1:15 at the Cohen Medical Center as the portal says. I ask if I have a flex sig today and she does not see it. I ask her to double check … a few minutes later she gets back on the line and says yes, in the Cohen building, also at 1:15.

So the email has some errors in it. I can deal.

I took (?) an enema last night, and the email goes on to say that I should take one “1 hour before the procedure.” OK, the procedure is at 1:15, I should take the enema at 12:15. I know my math. The email also says to arrive “at 12:30PM for a 1:15PM procedure.” 

Because of traffic and what-have-you, I plan on parking in the garage about 15–20 minutes before I need to be in the right office to take into account walking into the hospital, etc. Working backwards:

• (1:15 PM) Have the procedure
• (12:30 PM) Arrive in office 45 minutes before procedure
• (12:15 PM) Duck between cars in garage and take an enema
• (12:10 PM) Pull into hospital garage
• (11:45 AM) Leave home

Their procedure as outlined in the email necessitates that the enema be taken in the parking garage, where else would anyone be 15 minutes before they must be in the office? Do I not do that? Do I get to pick and choose which directions I am to follow? But then, I am in the wrong garage (or the right garage). Maybe the garage in the email has a special enema-room? If so, is it gender-blind? Co-ed? Will I run into Mary? Do I want to?

I walk up to the reception desk and the young lady asks my name and birthday. She looks me up and says “You are 45 minutes early.” I ask if she knows I am here for a flex sig and she says she does not see that in the record. I explain my call earlier and the email. After searching a bit she says she sees it in the record, but there is “no one back there now.” I believe the look on my face is what convinced her to go in the back and check. She returns and tells me the nurse will be right out.

The nurse comes up to me and honestly before I said a word she just looked at me and said, “You look upset.” She told me the doctor will be here at 1:15, I should just wait; I asked why I was here at 12:30. She said,

As a rule, we ask all the patients to get here an hour early.

Go ahead, read that again. Yes, she really said that. I sort of lost it, in a respectful way. I asked lots of questions such as why Inanna has to leave work 45 minutes early for apparently no reason. Why I need to sit out here on my ass when I could be home doing things. I asked why I got an email with all this bizarre information. She was relatively speechless. She did take a copy of the email (above) and shook her head. She did apologize for things she had little or nothing to do with.

Another woman called me in and took my weight and vitals. She then took me to the exam room, it was 12:42, I looked, and she honestly said to me,

You will need to wait. The doctor is not here yet, you came early.

When the nurse returned I shared that with her, and told her what I thought of all this. I think I was still polite, but can’t be 100% sure.

At 1:00 two other women came in, I believe one was a nurse practitioner, the other was not introduced. The NP asked what was going on. When I pointed out the instructions on the email she said “So you did not do the cleaning procedure.” She made it a statement, not a question.

Of course I did, but it was not possible on your time schedule. I did it right before leaving the house a bit more than an hour ago. That’s your fault not mine.

Then I pointed out all the other errors and she photocopied the email. It was about 1:10 PM and she asked what else she could tell me. I looked her in the eyes and said,

Did my tumor shrink?

Did the chemo-radiation work?

Has my cancer spread throughout my body?

She said she would get the doctor right away. At 1:30 the other woman popped her head in the door and said the doctor was with another patient and the two of them were stationed right outside that door to grab him right away. About 1:45 he came in with the radiologist. No Dr. Pye nor any oncologist.

The CT and MRI showed the tumor shrank a very little bit. That is better than growing, by far, but still a bummer. They did not seem worried about it. All of the lymph nodes have shrunk, except one higher up which was enlarged, but again, they were not overly concerned. My liver and lungs are clear. So the original plan is still on, surgery in September, then 3–4 months of chemo.

Then on to the flex sig. No anesthesia or anything. Basically bend over and a camera goes up your one’s my butt. Not pleasant, not awful. And no, not enjoyable. During that exam the doctor was pleasantly surprised. From that angle he could see that the tumor significantly shrunk. It is basically gone (from the inside of the rectum) and all that is left is an ulcer. This is good news, to say the least. The tumor is still there, and from the other side of the rectum, about as large as it was when this all started. All in all this is good. This is why they do the various tests and scans, to see from all different views.

Then a conversation with a nurse about what to expect around surgery. Basically that will all suck. I will need to give myself injections daily for a while after surgery, different meds, etc. I have a packet to read to get prepared, can’t wait.

An oncologist came in, I have met him before, he is substituting for Dr. Pye. I like him, so no problem. He added to our knowledge as to what to expect.

No one goes through this un-scarred.

I may have bowel problems, erectile problems, bladder issues, or just stay ugly. Chemo will start 4–6 weeks after surgery, that would be around November 1. If I heal quickly and well, the ostomy bag may be removed before chemo starts otherwise I will have it during the 3–4 months of chemo. The way it looks now, I will go in for chemo on a Monday and get a couple of hours of infusion and then go home with a chemo pump for 46 hours. Then 11 days with “nothing.” Then repeat for up to four months. Because I did so well on the pump with the 5-FU (and actually I did relative to many others) he does not expect my chemo to be too bad. For what that is worth.

He said that I would come in on Wednesdays and have the pump removed. I said that I could do that easily my self, just pull it out of the port. I said it seriously with a bit of a smirk. He explained the seriousness of the sterility. I told him the story of the nurse with the pager and he was literally aghast. He asked for her name, I hessitated. He asked again, said he needed to know, and I knew from his face that he did. I told him. I then said I did not know why I did not say something when it happened and he shared a story of his own, when he was in a similar situation and did not say anything. And regretted it, as I do.

My doctors are top-notch, there is no doubt about that. But there are so many issues with the support staff that I am getting more and more uncomfortable. Other than the documentation here, I don’t know what to do. For many reasons, changing hospitals is not a good idea, and no guarantee it would be better. There is a woman in patient relations who has seen this blog, knows who I am, and things don’t change. No one has said any of my feedback is wrong, the staff I tell agree that things are outrageous. And here I am, supposed to take an enema between a Ford and some mini-van. Luckily the Ford was brown.