Checkup with the Surgeon

I hadn't seen Dr. M., the colorectal surgeon, since he did my biopsy back in May: The Biopsy
It was time to see him again. Dr. Who had suggested to me that the surgeon would be able to get a good look inside, using the 'illuminated dildo', to see if the tumor was really gone and to do any necessary biopsy follow-ups.
Dr. M did examine me, but only on the outside. He said it didn't look like I was ready for any probing exams with the anoscope. There was still the results of the radiation burns in. The odd protuberances that Dr. Who thought were hemmoroids, were just more trauma from treatment. He told me to keep on using the silvadene for the burns and to use lidocaine too for the pain.
I had wanted to have the exam, to know if everything had worked as promised. But I also was very relieved NOT to have it, cause yeah, there IS a lot of pain still.

Painkillers, Part 3: Alternatives

I was desperate to find some alternative to painkillers. Almost all of them seem to cause constipation, which would mean 'playing around' to find the right combo that wouldn't leave me seesawing between diarrhea and constipation. I really didn't feel up to all that and I realized that my main problem was sleep. During the day, I didn't use any painkillers because being active, even just reading or watching TV, was enough of a distraction. But once I was in bed, I was alone with my pains and even though they weren't huge, they did keep me awake.
Voila! I thought of marijuana. Besides fun, it's mainly used for nausea, but there were reports that it dulled pain. I won't say where I got it from, but a couple of joints were donated to me. THANKS!!
I did try it. First off, even not inhaling deeply, it really burned up my lungs and throat. Laying in bed afterwards, my throat hurt more than my butt. But after awhile, all the pain did go away. So it was working!!!
Sort of....but I was left in this fugue state, not really asleep, just sort of comatose.
"Do you feel like laughing?", I asked myself. The answer was no. "Do you feel hungry?". Again: no. Just laying there, unable to sleep, albeit painfree.
Somehow, this wasn't working either. Hopefully, Part 4 will be the end of my quest for pain relief AND sleep.

Painkillers, Part 2: Trial and Errors...lots of errors

The next day, I called the nurse. She recommended I continue to take the Tylenol with Codeine, but add 3 colace a day, plus 2 senna at night. I ran right out and bought the medicine. But when I got home and looked at it, I was stymied. It was still early in the day. 3 colace?! What if I took it and got diarrhea, which was a distinct possibility? If I got it early, would I take an immodium? And then take the Tylenol with Codeine at night to got to sleep? That way would lead to constipation again.
Someone wrote to me about their experience with another painkiller: "after days of trial and error, we finally ended up ..." in her case it was several colace, senna, milk of magnesia, plus some prunes. But for me, the key words were "after days of trial and error". "Trial and Error" sounded like: Put yourself thru a lot of painful experiments. I really could not bring myself to do that to my body.
I waited until I saw Doctor Who a few days later. He blanched when I told him what the nurse had said. I'm glad I held off because he told me that dose would be too much. He said I would have to "Play around" to find the right dosage of colace. OK folks, playing around is the same as saying 'days of trial and error'. He also said to stop taking the immodium and only take the Tylenol with Codeine when I got diarrhea. Sounded ok, until I left the office and realized I usually got diarrhea early in the day. If I took Tylenol with Codeine at that time, it would knock me out.
He also had mentioned that the nurse I had spoken to was not his specific assistant who knew me but a generic nurse on call, spewing out the textbook answer (he didn't say this part) without really knowing ME.
At this point I was pretty mad. They say they will manage pain, but it seemed like they were leaving it up to me to CAUSE pain to myself in the pursuit of finding the right dose.
There will be a Part 3 to this saga.

Painkillers, Part 1: All those Side Effects

Once the treatments got underway, I was prescribed a painkiller: Tylenol with Codeine. The main side effect was going to be sleepiness. The other side effect, not emphasized as much, was constipation. I had already been told to take immodium if diarrhea happened. A side effect of the radiation was diarrhea, thus the immodium was often in use.
One day, I noticed that the symptoms of diarrhea were starting to appear. I took the trusty immodium. That night, due to pain, I decided to try the tylenol with codeine. A regular dose is one to two teaspoons. I took a half teaspoon.
It worked great. The half of a half dose didn't really do a LOT for the pain, but the codeine part put me right to sleep anyway, which was fine.
But within 2 days, I had horrible constipation. Believe me, the pain of that can be just as bad as the pain of the radiation. The whole area was already burned and now it was being ripped apart. I will not go into all the sordid details, but afterwards, I swore to never take the tylenol with codeine again.
But what was I going to take for pain instead? Especially at night when the nagging pain kept me awake?
Stay tuned.

My New Best Friend

After several difficult days of worrying about infection, cleanliness and open sores, I finally called nurse Kathy, Dr. Hu's assistant. Kathy recommended that I buy a sitz bath. I had heard about them, but thought they might be hard to use. The old style was a basin you precariously balanced on in the bath tub, sort of like one of those circus elephants standing on a tiny box.
Kathy explained that now they were 'high tech', meaning that they fit right over the toilet bowl. Along the rim, as you can see in the photo are little slots so the water sloshing back into the toilet, not the floor.
My other concern was infection. Was it a good idea to 'stew in your own juices'? She said it was OK. To only use tepid water, nothing added to it.
I ran right out and bought one at my handy dandy surgical supply store. It was only $10.
It's so soothing and a much better way to care for the wounds.
I LOVE my sitz bath. It's my new best friend.

Happy Fourth of JULY

I can't really see what the burns on my butt look like. I have to rely on Doctor Who's exam.
On my last visit, I asked him what it looked like.
His answer: "It's quite raw. Think Fourth of July BBQ"
Gee Dr. Who, thanks for the image.
And I hope you think of me today when you're at your BBQ. Bon Appetit!

Skin Care

I've finally finished all my treatments. YEY!!!!
But suddenly, my skin which had turned an unnatural shade of dark, now is bright red. Doctor Who explains that you keep on 'cooking' even after radiation stops.
So suddenly I've got these big open sores.
Skin care is so important. I'd been religiously using the Aquaphor twice a day. Now I've added Silvadene cream.
Here you see my regime: using the handy dandy mirror helps me see what I'm doing. Rubber glove with silvadene and a dab of the
aquaphor. Apply twice a day or as needed.
Sores are hurting now.

Evil Radiation Techs

The Radiation Techs have been so nice, kind and helpful. But, sorry guys, I'm truly sick of seeing you.
You mean well, I know you do. You are the soldiers, shooting down my tumor as well as doing search and destroy missions in my lymph nodes.
But here we are, at the last week. The techs have coned down to a pin point place on my butt. It's starting to really hurt and I'm getting some very strange imagery as I lay on that damn table.

The Final Countdown

Finally arrived at the Last Week! HOORAY!!
Now they are coning down my butt. Meaning they are just targeting the site where the tumor was found.
My butt is starting to feel Quite Sore!

Coning Down

Got some bad news today. I thought I had 5 weeks of treatment but I just found out there are actually six. Bummed me out.
However, on the plus side, they have started to cone me down. Which means they are radiating less and less of my body. Rather then the all over blitz of my groin and butt they had been doing up till now, they will concentrate more and more on the problem areas.
So they are finishing up my groin. Here you can see clearly and scientifically how coning down works. They stop radiating my little lymphys this week.
And they will be doing the same with the butt....but for a longer period of time, due to that pesky tumor, damn him! I do hope he's dead or dying.

Tumor Talk

.....Message.......
Hello....you don't know me. And, if you are reading this now, I am probably dead.
I am Imelda's tumor! I left this message secretly on Imelda's computer (it was Very hard to access the keyboard from my position) in case anything ever happened to me.
I just want to give MY side of the story. I am not a villain. I am not Evil. I want what we all want. To live long and prosper in peace, to have children, to form a community of friends and relations. I am not an illegal alien. I have lived inside of Imelda her whole life and share many of her values.
We have only reached this parting of the ways because I was willing to DO something about my dreams, OUR dreams, that she was too timid to even imagine. YES, I have strived for immortality. I have had to overcome enormous prejudice and outright hostile action from the rest of Imelda's body in order to reach my personal goals. Against overwhelming odds, I have gotten to where I am today.
Except, as I said, if you are reading this, I am probably no where today. SHE attacked me when I was so willing to live in peace with her. She poisoned me, burned me as if I were some sort of medieval witch. I am not that at all. I simply tried to overcome our mutual enemy: Death. And I am not ashamed that I died trying.
.......End of Message.......

Is it Overkill?

Sometimes I wonder about the radiation treatments...and the chemo too. Is it all overkill? The big guns, the strafing, the nukes, the napalm, poisen gas...you name it. Isn't there a more elegant way to do this? A secret agent who would just go in there and shoot the cancer in the head? Or maybe scratch the cancer on its leg with a poisen tipped umbrella? There is so much collateral damage....meaning me, my butt, my skin, my innards..you name it.
If you don't know the story of the poisen umbrella, here it is:
Spy Killed by Poisen Umbrella

My PERFECT BUTT

While I'm laying on the table, getting ready to be irradiated, I can hear the techs murmuring over my butt.
They say things like, "AWESOME", "PERFECT", "EXCELLENT"
I've never had my butt so admired!
But really it's all about the how I'm positioned on the table. When my tattoos line up perfectly with the lasers, then the techs are happy. Otherwise, they have to twist my legs until it's all "Perfect".

The Kinkiness of Strangers.

This woman, in a Carmen Miranda outfit, was handing out flyers in front of the hospital where I go for radiation every day. She agreed to pose with me after I put the guilts on her, mentioning the 'C' word...that's cancer.

Week Two

That should be WEAK TOO.
By the second weak, the chemo affects have kicked in. I'm tired, oh so tired. I can barely stay awake, even on the subway, going to my radiation appointments.

First Radiation Treatment

The three techs measure carefully, check, measure, x-ray, check some more. This picture is not technically correct. Of course, the techs left the room before the radiation therapy took place.
It didn't hurt in the least. I've got pretty tough skin.

Doctors and more doctors

Before you begin your actual treatment, it's a good idea to get all your routine doctors visits out of the way. If you can get to the dentist way ahead of treatment it's a good idea. Chemo messes up your gums. In my case they turned an odd shade of white and bled if I even looked at them. I also went to the eye doctor, just so I wouldn't have to schlep there once treatment started.
Here I am at the gynecologist. Since the cancer and the radiation treatment were going to be so close to this realm, it was doubly important to make sure all was right before starting. She explained to me what to watch out for and what the implications were. For instance, if I started to have a lot of gyno infections, it COULD be a sign that the cancer had broken thru into that region and anal stuff was causing the infections. Also told me to do my Kegels. How many of you do those? Have to keep that 'woman area' flexible and elastic. Not the burnt disaster zone it could become from the radiation. Nice.

The Fitting

It was time to get down to serious business. I went for my fitting, meaning a simulation to set me up so that my radiation therapy would hit me in precisely the right spots.
Once again splayed on a table with a radar? radiation? x-ray? machine above me to take pictures.
Dr.Who, the Radiation Oncologist, a physicist and a radiation tech all spent what felt like hours working on finessing my butt. I was trying to get used to people peering into my butt but this fitting including inserting what felt like a screw in there. I really didn't feel like having a conversation at that point; basically I was gritting my teeth. But I suppose the x-ray could pick up where the tip of the metal was touching. Great, Nifty...but oh so painful.

Exams and more exams

Next, I was sent to see the Radiation Oncologist, Dr. Who. He wanted to examine me. So did his assistant. I was beginning to get use to having strangers stick their fingers in my butt. I wonder if it was OK with them?
That really wasn't the hard part. After the exam, he sat me down and explained the course of treatment: 5 weeks of radiation with a week of chemo at week one and week five. He hinted that there would be some 'discomfort'. (Isn't that like when the dentist tells you that you are going to feel a little 'pressure'?). After all, a radiated asshole is not a happy asshole. It shuts down, it refuses to comply with the reason for it's existence. It's angry, hurt, furious. There's no talking to it. Well, he didn't say that but I surmised it. Right now, I was to eat a lot of fiber, have a pet scan to see if the cancer was anywhere else and go and see my other doctor, the chemo guy.