Official Anal Cancer Movie

Next week I have an appointment with the surgeon, but in the meantime, not too much is going on. The usual recup and recover.

So, I'll take this opportunity to name my official anal cancer movie: The Human Centipede.

It's a personal choice. I highly recommend and warn that NO ONE actually rent this movie and see it.

Rest and Relax and Recuperate

It's important to take time off from being the person with "cancer". To RELAX and be normal.

So last night I went out with my old friends, Carol and Stephen. We has a lovely time, laughed a lot, even though we were discussing a lot of sad stuff.

They FORCED me to do things that I would normally not do.

Chemo Brain

Chemo Brain is what happens to your brain after you poison it and punish it, stress it out....and did I mention poison?

The signs can be extreme, but for me, the first sign, hopefully the only sign, is a failure to be able to do sodoku's. It's very vexing, since prior to treatment I had gotten quite good at it.

My older sister Carmen, who I call 'Sensei' had taught me the secret ways of sodoku and I had gotten to the point of being one with my sodoku. Unfortunately, chemo brain has now interfered with that ability. I can barely do the easiest puzzle and it often takes repeated attempts.

I'll be all better in a year or two. In the meantime, I have to write down lists and......and what WAS that other thing I have to do? Hmmmmm?

Good News from Dr. Who

I went to see Dr. Who. It was a routine visit; he only planned to check the progress of my backside burns. But my anxiety had been growing lately. I begged him to check out if the tumor was gone or not.

He warned me it might be painful but I was willing to try. And after the exam he told me he had felt no tumor where tumor used to be. Sorry little tumor, but I think you have been defeated!

This, of course, is not the definitive test. I'll have to go and see the surgeon who did the biopsy. He's the one who has the 'illuminated dildo' as I like to call it. Others might say 'anoscope'.

And in a few months time, I'll also have to have another PET scan to check out all my other organs.

But in the meantime, Dr. Who's exam made me awfully happy.

Painkiller, Part 4: Finding Lethe

Let's finish up this crazy subject. Having determined that what I really wanted was something to help me sleep, I called my chemo doc: Doctor Illyass. He ordered an Ambien generic for me. At first I was thrilled with it. I took half a dose and went right to sleep. But after a few days I realized that there was something peculiar about it. I would sleep exactly 6 hours and then wake up. Not a minute more nor less. I was sleepy! So I took a whole dose. Then I slept exactly 7 hours. And suddenly I became quite depressed and ANGRY. Very angry. Whether it was from the lack of sleep or the Ambien I didn't know or care. I stopped the Ambien.
Luckily I had an appointment scheduled with Dr. Illyass. And happily, he told me that I could use Melatonin, which I had used successfully before treatment. I had had to stop it during treatment because it is a sort of hormone.
I was thrilled. That night I took my dose and sweet sweet Lethe received me in her arms. Yes, I know what you are about to say, Lethe is the goddess of forgetfullness, not sleep. But she's always been my go-to goddess for getting to sleep. Here we sit on the edge of the river of the same name. Sweet Lethe!!!!!

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.

Hair Loss, Part 2

This is the fourth week after my last chemo treatment. Once again, I'm losing hair at a rapid rate.
I felt like I'd lost about 25% the first time, so I'm gearing up to lose a lot more.
Could I really lose 50% of my hair and still 'fake' it?

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.