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.