Changes are afoot …

Today I had radiation treatment number 26, just two more to go. This is the point at which the radiation gods (or the fellow NY member of the tribe) decide to change the settings on Truebeam, my 1:15 daily date. Today’s radiation was focused solely on the tumor itself (did I mention I have rectal cancer?) as opposed to the last 25 which were simply flooding my pelvic girdle with sterilizing radiation. They figure that any stray cells in the area that surgery may miss are moot at this point.

The next two radiation treatments are called “boost” treatments. They turn the radiation up to 11 and I assume it stays focused on just the tumor.

I came home today feeling worse than usual. Stayed in bed for a few hours. This is really starting to suck and I am told that next week, after chemo and radiation end, may actually be worse. Something to look forward to.

My butt hurts. My stomach aches. It hurts like hell to urinate or ejaculate. I get queasy fairly often and am starting to get a rash or two in the target area. And yes, my nuts still hurt.

And they tell me that many get worse side effects. How reassuring.

Three days, five showers, no treatments!

With respect to side effects, there was general agreement among “my” doctors, nurses, etc. on certain things:

• Both chemo and radiation make you tired, if not exhausted. With one of them, the tiredness can be abated with naps, the other, naps don’t help. I forget which is which, but it is moot. Naps are not working for me.
• I will get queasy but should not get full-on nausea.
• Rashes and skin irritation often occurs on palms, sole of feet, buttocks, between butt cheeks, and in the folds of skin around the pelvis / genital area.
• My anus may decide to show who is boss and become rather bothersome.
• I may lose any hair in the region of the radiation, i.e., pubic hair.
• Side effects won’t start until the third week, or so, and will continue for three weeks, or so, after treatments end.
• I may get cancer.

Three days after treatment ended …

• I am exhausted. All The Time. Yes, I can function, and this morning I played lawyer at a state special education hearing. I also crashed pretty hard afterwards (in my bed, not my car). And naps don’t do squat. It is an interesting exhaustion, a bit more physical than mental if that makes sense.  Well, even if it does not make sense, that is the way it is.
• I get queasy daily. Usually in the afternoon and evening. So far, pure ginger tea, crystallized ginger candy, and “medical” marijuana work. I am using the marijuana sparingly only because I don’t need to use it more. I have not taken the drugs they have given me in case I need them. Yes, the drug the first chemo nurse said to “take as soon as you get home and every morning.” (So glad my chemo nurse was changed.)
• No rashes to speak of! And no, I am not a Ken doll, yes I have creases, they just stayed healthy! What is interesting is that yesterday and today, while the side effects are increasing, my hands feel a tad different. Almost like I am wearing tight gloves. No rash, and will ride it out a day or two before asking.
• Ah, the end of my rectum, my butthole. Yep, talking about it in public, lol. There was great interest in it, so much so that during the treatments four doctors, a nurse practitioner and a nurse checked it out multiple times. When I asked one doctor why a different one checked it out, the answer was …
  

  That’s my area. They don’t even know what they are looking for.

  Wonderful.

• I have not lost any hair, anywhere.
• As expected, the side effects are still getting worse, but not by all that much. The exhaustion is a bit of a bitch though.
• [Caution, I think my use-professional-language-filter is failing] Cancer? Cancer is a fucking possible side effect of radiation to help cure me of … wait for it … CANCER?! Are you shitting me? “It’s true” they said as I signed the consent. Cancer. What the fuck? I will know if I have more cancer in three weeks when there is more imaging. Cancer. Really? F U.

There is a worry about peripheral neuropathy. That is a nerve condition and often affects diabetics where they either cannot feel their feet, and/or there is numbness and tingling, and/or break-through pain (like a lightning bolt down your leg). I have had peripheral neuropathy for several years for a totally different reason. There is fear it can get worse with the chemo after surgery, no expectation for it to change with this first course. Surprise, it ramped up a bit this past week. Unexpected, we will see if it continues.

Have I mentioned that cancer sucks?

There are three side effects of acid: enhanced long-term memory, decreased short-term memory, and I forget the third.
~Timothy Leary

Holy shit … does the bible really talk about poop? You bet it does …

And you shall have a trowel with your tools, and when you sit down outside, you shall dig a hole with it and turn back and cover up your excrement. ~Deuteronomy 23:13

And the hidden message here is that excrement is bad, dirty. Cover up your shit, man! And then in the next verse we learn why …

Because the Lord your G-d walks in the midst of your camp, to deliver you and to give up your enemies before you, therefore your camp must be holy, so that He may not see anything indecent among you and turn away from you. ~Deuteronomy 23:13

Ah, now that is confusing. Poop is “indecent” and must be removed and buried or the holy one, blessed be He will turn away. WTF? If, in fact, we are created in his image, and our rear discharge is indecent, how does all this correlate? I will leave that to you and your clergy.

I honestly don’t remember what we called this bodily waste when I was growing up. I think bm and bowel movement were used, I should ask mom. And I was never into laughing about it as a kid. Nothing strange or whatever, just didn’t particularly find it funny. And throughout life, never spoke about it much. My children are severely disabled and I have continually been changing diapers for just about 26 years. Shit is my life.

My first college roommate, in 1976, was the Shah of Iran’s nephew. Really. And his father was a military leader in the palace. At that point, Iran was not the country it is now. Ali did not speak more than a handful of words in English. He was great, looked exactly like a shorter Omar Sharif, had oodles of money, and we got huge tins of pistachios every two weeks. Early on he called me over, was tugging on his bedding and asked

How you call this?

That’s a sheet.

Shit

No, sheet.

Shit?

Honestly, I took him in to the bathroom and explained.

In 2012, The New York Times had an article entitled As West Harlem Picks Up, Dog Owners Don’t. Apparently to avoid using words that may be objectionable, the author seems to bend over backwards not to shit on anyone’s fecal sensitivity. Here are the synonyms used in that one article:

• dog dirt
• nasty bit of business
• curb-level scourge
• renegade dog leavings
• waste / dog waste
• stuff
• poop
• what a dog has left behind
• instances of unlucky steps
• doggy-do

What I don’t understand is why they did not just use scat. Merriam-Webster defines scat as “an animal fecal dropping.” Works for people as well actually.

Personally, I really like scat. Scat itself. So much I have been known to pay money to be exposed to scat, at least in my younger days. And who does scat better than Ella Fitzgerald and The Velvet Fog, aka Mel Tormé?

Ok, on to the post.

This entire adventure started many months ago when I noticed changes in my … ummm … droppings scat feces stools poop. As Oprah is said to have said (and the Internet does not lie) “Everyone looks at their poop.” There were changes in color (lighter), consistency (a bit looser), and the feeling as it exited my (very cute) butt. This was for a while and I noticed what may have been (it was) blood. Remember that radiation radiates most, if not all, of my pelvic girdle. That includes parts of my intestines and rectum (and what used to be the family jewels). That causes (and possibly also because of the concurrent chemotherapy) a very common side effect: diarrhea. I found that everything in that area was confused; I was not always sure if I needed to just urinate, to defecate, some of both or sometimes neither. It was not the easiest to control it all. No accidents, but absolutely needed to sit, no matter what I thought I had to do. The doctors would ask if I had blood in my stool, and when I asked what they would do different for a “yes” or a “no,” the answer was “nothing.” That is when I started eating beets (which I love anyway) as my little protest. (In case you are scratching your head, for many people beets cause their poop to be reddish.)

Towards the end of the chemo-radiation, my poop was somewhat “normalizing.” That is, normal for me. Not that I ever looked (lol), but I know what my poop generally looked like over the past, oh, 59 odd years. Or at least couple of decades. Color was darkening a bit, and consistency was a bit more familiar. That was at least the right direction.

I am now a week and a bit past the chemo-radiation. And guess what?

My poop is back! I looked this morning and saw my old friend! (Apologies to any old friends reading this.)

I am not a doctor, nor do I play one on this blog. I am just a poor shmuck with rectal cancer, but this has to be a good sign. Not a sign from the holy one, blessed be He, because He would have me bury it. But it has to be good. Please, G-d, tell me this is good.

And then like all the old girlfriends, it was gone in a flush.

My next medical appointment is for imaging, a CT and an MRI, on August 6 and then I meet Cerberus II two days later. The scans are to see how the tumor has changed and to see if the cancer has spread. The idea of that scares me shitless.

And now for some great scat. In her 1949 performance of “Flyin’ Home”, Fitzgerald alternates the bilabial “b” and “p” plosives with the alveolar plosive “d”. The “b” and “p” sounds are formed similarly to the sounds of jazz wind instruments, which sound by the release of built-up mouth air pressure onto the reed, while the “d” sound is similar to the tonguing on jazz brass instruments. William Stewart, a Seattle researcher, has proposed that this alternation simulates the exchange of riffs between the wind and brass sections that is common in big bands.

So now that you are the proud owners of more information about my bowels than you ever wanted to know … urine trouble is next.

I have been urinating for almost 60 years now. I don’t remember the first time, but my mother claims she does.

Before chemo-radiation started I had an appointment at radiology to mark my body as to where to aim Truebeam, my jigawatt girlfriend. I got to the appointment on time but the radiologist, I was told, had a weekly meeting at that time every week, and I had to wait 45 minutes. Yeah, that pissed me off as well, so to speak. After 40 minutes or so of cooling my heels, I went to the only person at the desk and asked about a men’s room. I went there, found a urinal, zipped open, took it out, let it stream, shook, shivered, put it away, zipped up, and after washing my hands returned to the waiting room. (If you are wondering about that shivered part, here is an an NBC article devoted to piss shivers.)

The doctor called me in. For reasons I cannot fathom, my radiologist reminds me of Jeff Goldblum. That is fine and if he wants to upload a virus into the mothership of my tumor, removing the force shields, blow it all to hell saving me and all mankind, then all the more power to him.

I am on the radiation table, they are futzing around, and after about 10 or 15 minutes they stop and tell me my bladder is not full enough. I was never told to come with a full bladder, I happen to have come with a full bladder, and yet, it was all moot. They bring me three cups of water that I drink and then restart the entire imaging procedure after 15 minutes. Multiple Sharpie^® marks and three tattoos later I do that peeing thing again and go home.

A full bladder sits in a different position in the pelvic girdle and I am told somewhat out of the way of the radiation. It was important to always have a full bladder when lying on Truebeam. As the chemo-radiation progressed all my feelings in that area changed. It quickly became apparent to me that I could not really feel how full my bladder was. Or if it was full. Or empty. I would empty it around 11:00 and then depend on how much I was able to drink by 1:15 and that was the best I could do.

One day I was in the chemo clinic first and then had to walk to radiation which is literally about as far as you can get in the hospital complex and stay in a building. I knew my bladder had to be pretty full and about half way there I knew I was in trouble, all of the sudden it was so full I really had to deal with it. Immediately. I found a bathroom and was able to relieve just enough to keep my bladder full and walk to radiation. I know what you are thinking, but yes, really, I can control it to that degree. It stems from a trick I taught myself in college that I will not describe here, just ask any lovers I have had since then. But I digress …

I also found that immediately after radiation I would go to the bathroom (with a presumably full bladder) and it was always difficult to “go.” I don’t know why, but by the time I got home that part was back to normal.

After about two weeks of chemo-radiation, it started to hurt to urinate. Not the same as a urinary infection, more of a strange, buzzing sensation like an electric shock (but not that awful). One of the curses of being a male with a urinary infection, or whatever I was experiencing, is that our urethra (the tube from the bladder to the outside world) is longer than a woman’s. Some unfortunate men it is only six inches longer, but I won’t go into my good luck turned curse. Strangely enough, the pain was really concentrated more towards the end of my penis and definitely from within my urethra. It would cause an awful sensation starting there and then throughout my body, like an electric shudder. And it would quickly dissipate and be gone. It was not every time I went, more often towards the evenings.

That brings us to today, almost two weeks since the chemo-radiation ended. It still happens but not as often and not as strong. But the general sensation of what is going on is still not all there. And once I start to urinate, the feeling that I am urinating stays after I am done. I actually need to look to see if I am done.

Why am I sharing all of this? Well, for one thing, no one told me all this shit would happen or could happen. Others should know, unless of course that none of this happens to anyone else and I am just fucked. Don’t tell me. Ignorance is bliss.

Ok, we have poop and pee out of the way.

Judging by the look I got from Inanna when I mentioned the next post would be on the painful ejaculations, me thinks there may not be a third installment in the “Things That Don’t Come Out Of My Body As Planned” trilogy for if there is, I may not have a reason to ejaculate for a while.