I got a call last week.
I am calling to schedule your test.
What test? I have no idea what you are talking about.
Your pouchgram. How is next Tuesday at 10:30?
Remember that I have an ostomy, my colon is diverted to the front of my belly and I have a bag (or pouch) attached that catches my, well, poop. That’s the only pouch I know.
Can you tell me what a pouchgram is?
It’s a sleep study.
Excuse me? What?
No, never mind. I am not sure what it is.
Who ordered it?
(she names a nurse practitioner)
Whatever. Sure, next Tuesday.
No preparation information. No mail or email like most other appointments. All I know is to show up on the fourth floor which I obediently do. Hmmmm, the breast clinic or radiology? I try radiology. And yes, the guy tells me I am in the right place. Damn.
Someone comes out and takes me to a small changing room and tells me to get undressed from the waist down and put on a gown. I ask what the test is about, he says it is to check my pouch. Ok …
I wait while wearing the gown and then get brought in to a room with an xray type machine. I ask the tech what the test is and he just looks at me. I tell him I have no idea. He says he will get the doctor.
An Indian woman (yes, it is relevant that she is Indian) comes in. She too is surprised I have no idea what this is about and tells me that I am free to leave and do it another time. I just asked what it is about.
To check your pouch.
Right, my pouch is fine and I show her.
Not that pouch. The one the doctor created during your surgery.
The doctor removed about a foot of my colon, starting just inside my butt and removed my rectum and part of the descending colon. He then brought the remaining part of the colon down towards my butt and reconnected it. In that area he did something that will hopefully work like my rectum did (where your poop is when you are scrambling to find a restroom). And guess what they call that … go ahead, guess. Yes, a pouch.
We are going to inject a contrast solution and take pictures of your colon to make sure there are no leaks.
Not with an IV.
In my asshole?
We like to use more technical terms here.
Ok, my butthole?
So there I am, again on one of those tables, this time with contrast going in my butt, a floroscope showing what is going on in real-time.
I ask the doctor where she is from and for the next 15 minutes during the test we discuss my two trips to India, great distraction for me, hopefully not for her.
No leaks, that’s good news.
I owe you all an apology. I know I disappeared and that was not right. I also assume you understand or will.
Chemotherapy is not easy. Having cancer is not easy. Being disabled is not easy. Things suck sometimes.
I am told, and know from some personal knowledge, that my trek through chemo went easier than for many other people. Everyone (doctors included) is amazed that I never needed the anti-nausea medications. I was continually told how great I looked. People were amazed to see me on errands or what have you. But I felt like shit. And it got worse by the day.
I have had peripheral neuropathy for years (numbness, tingling, occasional break through pain) in my feet. It progressively got worse (expected and watched) but since I have been dealing with it, I could continue to. It also manifested in the outer side of my left hand, making typing “q” or “a” difficult! And the exhaustion. The total, devastating exhaustion. I would lie down multiple times during the day.
I feel like a 60 year old when I go up a flight of stairs.
My oncologist (yes, Dr. Pye) looked at me, looked at my chart, and gave me a smirk (I am 60).
I have spent most of the last few months exhausted. Any (and all) skin conditions I ever had came back in a vengeance (also expected). The skin on my hands is tight and extremely dry, cracking, and often painful.
And I could not get myself to blog. I am sorry. For me, and for you.
The symptoms should have peaked last week or so, I have been off chemo for three weeks, and hopefully forever. In three weeks I have a CT scan to check my liver and lungs, and another cerberus appointment, the three doctors telling me what is to come. They will hopefully say we will reverse the ostomy so I can properly start using my butt again and get back to life.
My fear? Since my healthy cells were able to survive through chemo better than many other people’s, does this mean that my cancer cells (the target of the chemo) were able to as well? Dr. Pye says there is no correlation.
No one knows if there were any stray cancer cells in my body after surgery. We did chemo anyway in an effort to make sure none were around. The whole thing really really sucked. But this stage is over and I am still on the right side of the ground.