What My Insurance Company Thinks of Me

I happened to call my health insurance company the other day. Right now I have COBRA coverage and I was checking about converting to a regular policy in June of this year.

After asking my questions and just before I was going to hang up, I asked the customer service rep to verify that the date my current insurance would end is June. Boy, was I surprised when she said, "Actually, your coverage has already been terminated".

Oh yeah folks, she said terminated and she said that it was right now. After a long, but at the same time instantaneous, inner dialogue that including a lot of shouting and cursing, I politely asked for an explanation.

And she, oh so politely, explained that my insurance company, had recently changed the way they received electronic transfers and many people had been "dropped" by accident. Odd, don't you think that I being someone who spends a lot on health care should be among the dropped ones? And then to just cancel me rather then try to notify me that they were not taking my money anymore. How efficient they are.

She was nice enough to say I would be reinstated without penalty once they got my money. But they would not accept it right away. No, I couldn't just use a credit card or do a new electronic transfer. I had to send it by ordinary mail. Which means it will take days. Weeks actually, before the 'system' will accept me once again into the fold.

Nice huh? I had to cancel the CAT scan planned for the next day on my lungs. No time to worry about cancer, got to work on this problem right now.

Rare Cancer Online support

The Rare Cancer online support site has been a real lifeline of help, friends, good advice and tips for surviving all the weirder forms of cancer.

Unfortunately, I just want to let people know that it is currently down. The owner plans to have it up after the New Year.

So don't click on that link till 2012.

Charity begins in Florida

This has been a difficult but rewarding year and it's time to think of the less fortunate.

Save the Chimps is a charity I support that helps Chimps who have been used and abused in medical experiments. It's based in Florida and tries to provide open land and healthy life styles to my fellow brothers and sisters apes.

I've Been Deported

On Wednesday I went to have my port removed. YEAH!!!

P.A. Thor is shown here, ripping it out of my chest. Actually he did a very neat job of it.

We chatted thru the whole procedure. I could feel what he was doing...it just didn't hurt at all.

I was fond of my port; it was so easy to get my blood drawn and have injections. But it was time for it to go.

PET SCAN Results

I went to see Dr. Illyass, my oncologist, on Monday to get the results of the Pet Scan. I wasn't nervous or worried. I figured the treatments had been successful.

Well, the good news is that the scan didn't show any activity, except left over burning in the areas where the cancer had been. HOORAY!!!!

Maybe not ALL good news. They do want to do a CAT scan of my lungs in 3 months.

It seems there were a few pesky nodules that they will have to check out and make sure they are nothing.

Otherwise: HAPPY THANKSGIVING TO ALL.

PET SCAN, Part 2

Yesterday, I had my second PET scan. This is the one that will tell me if there is any cancer leftovers from the treatment.

First I was given some radioactive injections, the syringe sheathed in a protective metal sleeve. Then I drank some nasty 'berry' flavored liquid. I think that's the glucose that they monitor thru the scan. And lastly I got another weird injection that made me feel all hot.

After that I was scanned to bits.

Later, I got radioactive cramps and couldn't go to my dance class. BooHoo.

Awaiting the results next week. Stay tuned.

Poo-Tine

I just got back from a trip to Canada. I had to fine tune my diet carefully. It seems the Canadians put cheese on everything....even snails!

But I did find what should be the official food for Anal Cancer. What else but...POUTINE.

It's a mixture of french fries, brown gravy and, of course, cheese. They use Cheese curd. I'm not sure why except it's as tasty as cheese but doesn't glue the fries all together.

As for my diet while I was there, I got into the habit of eating prunes everyday. Plus my sister brought along an interesting product: chia seeds. The kind you put on the head of your chia pet. When soaked in water for about a minute they formed a mucilaginous blob. It didn't taste bad and it did the trick.

What trick is that you ask? Well, I'll leave it to your imagination.

Ditto

Hi there, Remember me? Everything has been going hunky dory for quite a while. But soon things will be heating up: visits to the surgeon, Pet scans, Port removal (hopefully)

Speaking of Ports, I went back to the oncologist to have my port flushed. We discussed the rash I got last time. So everyone was EXTRA careful.

The results? Well, you can see from the picture that the rash has returned. Itchy, red and ugly. Grrrrrr.

NO NEWS IS GOOD NEWS....Until....

I've had nothing to report for weeks. Which is a good thing. Many people thought it meant disaster had struck. But disaster would have been interesting to write about. So I've been quietly, unwritingly, healing and enjoying life.

Then I went to the chemo doctor last week. A routine visit. The nurse drew blood thru my port, as she always does. But over the weekend, for reasons unknown, an ugly rash began to form around my port.

I paid another visit to the chemo doc yesterday so he could check out if my port was infected or I had shingles. He said the rash didn't look like either of those things and told me to use some over the counter creams for the itch. He did tell me to get back to him about it.

Today I woke up and the rash was worse. I'll wait till this afternoon or tomorrow morning to call him again. I have a feeling I'll be making another visit.

Weird Fingernail Changes.

I used to have normal pink fingernails, but lately they have changed. At the bottom they are an eerie white color. Not nice little white moons...no, just a ghostly fade out, like a reverse french style nail. I think it's left over residue from the chemo.

Online, there are a lot of sites claiming to be able to identify disease from the looks of your fingernails. But having had all that poisonous chemo injected into me, all bets are off on what is going on. I think it will fade as time goes by, but of course, I'll check with the doctors.

Working at BWAC

I'm feeling better although sitting for any length of time is still quite uncomfortable. So I decided to so some volunteer work at BWAC. That's the Brooklyn Waterfront Artists Coalition, located in Redhook, that I am a member of. My volunteer work usually consists of stuffing envelopes and I like to stand while I do it. The BWAC office is currently working out of OHM Acoustics, owned by John Strohbeen, BWAC's intrepid president. As I stuffed and stamped, those weird hoots and wails of the speakers are constantly playing in the background.
Afterwards I went out to dinner with Jane, BWAC's Arts Administrator. It was a lovely outdoor place on Smith Street: Bar Tabac.

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.

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.