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.

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.

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.

Chemo and more chemo

Yeah, it's my sixth and last week. But no celebrations yet. I have to go thru the whole Chemo regime all over again.
That means a nice big dose of Mitomycin on Monday and then a whole week of that damn 5-FU in it's little evil yellow balloon. God I hate that stuff.
My gums turn white, my blood looks watery and everything taste bad.
This time is worse then the first. My energy level really plummets. I feel like I'm constantly walking uphill and it all seems a whole lot heavier then before.
On the plus side, I know that all the worse symptoms of the chemo will end in a couple of weeks.
Of course there are all those latent 'side effects' like heart disease and blood problems...but I'm only gonna deal with the ones I can immediately feel.

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

Hair today/Gone tomorrow

Let's fast forward to week 4. That's when all the fun really began.
I started to lose my hair, lots of it. Here's one morning's worth. I continue to lose the hair at that rate for about 10 days and then it slows to just 'a lot' . Thank goodness I really have a lot, cause it hardly shows at all. But I can feel it. I'm down to about half of what I had. What will happen when I get the next dose of chemo?
Oh, let me add, that some people don't care about hair loss, like my brother Jon who, coincidentally, has a lot of hair loss himself. And many women don't care too. GOOD FOR THEM!
But I care. It's the outward manifestation of an inward fuck up, to paraphrase the Baltimore catechism.

My New Die-It

Here is my new diet: White food, bland food, unhealthy (under normal circumstances) food: white Rice, white bread, white pasta and bananas are my main stay. Any deviations from the norm and the cancer god punishes me big time. As in doubled over in pain punishment. So I obey.
But yesterday, I was walking in the street. The smell of bacon came wafting from some coffee shop. My body turned involuntarily in that direction. I had to pull myself back. Slap myself, metaphorically, on the face.
I also stand and drool in front of those hideous fast food posters in the subway: stuff I would never eat normally. Well, the stuff I AM eating is stuff I wouldn't eat normally.
I want olives, and greens with garlic, and brown rice, and salad (except in Germany), and (Tears) a chorizo, a morcilla, some cheeeeese.

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.

Missing in Action

This is the time when I really miss my husband Wil. He was around for my breast cancer treatment, many years before. He added a note of reality, confusion, support, humor and love to what I was going thru. He was my muse.
Here you see us in happier times. He was also a ham for having his picture taken.

Side Effects

They call them side effects so you won't take them so seriously. But they are actually just plain old EFFECTS. One of the Effects, that I noticed right away, from the chemo, was Nausea. UGH. I was given something for it and had to take medicine every day that first week to counter it.
I never actually did get to what is shown in the picture, but I FELT LIKE IT!
Let's face it, everything about anal cancer is in the toilet.

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.

It's Showtime!

The first day of treatment: It starts out at the chemo suite. First I'm given some anti-nausea medicine, then I'm given my dose of Mitomycin. Yummy! Then a tube is attached to my port along with a bottle of 5-FU. The bottle will hang from a pouch on my waist for 3 days, then I go back to the suite for a refill. Finally it's all done on Friday.
Here I am with my 5-FU. Inside the bottle is a bulb of the medicine. Over the following days, the bulb will deflate as the medicine goes into me. There's no motor or anything. I'm told it happens thru body movement.
I'm also given pages and pages of info on the medicines. But I'll only tell you about the side effects that happened to me as they come along.

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 Port, Part two

I don't know what they injected me with, but I was awake and chatting with the doctor for the whole procedure and didn't feel the slightest thing. Only when I got home did I realize how mauled I had been. I am using here my human avatar to show you just how black and blue I ended up.
The doctor made a little cut up near my clavicle, threaded a tube thru a vein and brought the tube down into the port, just above my breast. It looks like he did an awful lot of excavating to find the perfect placement.
The port itself is about the size of a quarter. After the bruising died down and the cut healed up a bit, I was able to use my arm in all the usual ways.

The Port, Part one

My veins were all screwed up, due to having gotten chemo in the past and only having one 'good' arm to use. So the decision was made, by me and my doctor, to put in a port. I could have not done it. But that would have meant spending a week in the hospital, both at the beginning and end of treatment to get 'infused' with the 5-FU. No thanks. I'll do that port thing.
It's surgery. Here I am getting ready to have the port inserted below my clavicle.

Tips and Comments

A lot of people have told me they had trouble leaving Comments on the blog. I have now made it easier. If you don't have an account with Google or blogspot, you can leave your comment under 'Anonymous'. Just remember to include your name so I know you are are!

In case anyone wants even more info on anal cancer, like wondering if that thing they thought was a hemorrhoid is something else, here are some sites.

Anal Cancer Foundation
You can find a lot of links to other sites there.

I like the Rare Cancer forum:
Rare Cancer Forum/Anal Cancer
There's a lot of warmth and humor and support.

Personally I found Blog for a Cure a bit earnest...but some people like and need that:
Blog for a Cure

For more technical stuff, The National Cancer Institute has links to a lot of information:
National Cancer Institute
I found the info on staging very helpful. I just read it and finally understood why I was a Stage one or a stage 3...not a 2.

If you want technical info that isn't so technical, this site may be helpful:
MedicineNet:Anal Cancer

To see the guidelines that your doctor is probably using, this is the site, but it's quite complex:
NCCN Guidelines for Anal Cancer
You have to sign on to gain access, but it's free.

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.

Visit to Chemo Doc

My next stop was to see my Oncologist, Dr. Illyass. Here he is with his sometimes tangential assistant, Nurse Diz. (She chose that name for herself, need I say more)
Dr. Illyass had been my oncologist for many years, due to an earlier breast cancer. I had just seen him a few months before. But at that time we had, of course, been focused on my breast. I thought about making a joke that we hadn't been paying enough attention to the OTHER side of my body. But I didn't. Dr. Illyass is a sort of serious guy. Ask him any question; he'll think about it, answer it, elaborate. That's what I really like about him. And he gave me an email address to reach him out. The ONLY doctor who ever did that....and he really answers my messages.
As for Nurse Diz, well, let's just say we spent a long time on her gluten intolerance. NO, no really guys, she's a great nurse and very attentive....maybe because she's cutting back on the caffeine...I found that out too.
Back to moi. Dr. Illyass went over the PET scan results and showed me charts outlining the course of treatment if I'm Stage one, just the tumor, or Stage 3, tumor and lymph nodes. I forgot to ask what was Stage 2, but it was not that important. Both one and three had the same course of treatment. I would be receiving Mitomycin at week one and week five of my five weeks of radiation. And I'd also be getting something called 5-FU (yes, FU 5 times!) which I would carry around in a little pack, receiving a continuous 5- day infusion, also week one and week five.
Some hair thinning, mouth sores, fatigue, diarrhea, nausea....the usual. Why oh why do I never get this symptom: poor appetite?The one time Dr. Illyass made a joke, he had said that oncologists are the only doctors who are happy when their patients gain weight. HAHAHA.

My Official Cancer Song: Keren Ann's Blood On My Hands

I was so angry to find myself with cancer (again). Not sad, not fearful...ANGRY.
I heard this song and made it my official: Mad Cancer girl song.

Petscan

The next step was getting a Pet scan to see where the cancer was exactly, how severe it was and whether it has spread anywhere else. That's Positron Emission tomography in case you were wondering.
They injected me with some radioactive stuff and glucose. Also had to drink a big bottle of a mocha flavored something or other (forgot to ask about that one) Anyway. The radioactive stuff is attached to the glucose. Cancer cells LOVE glucose. They have a sugar addiction. So once this glow in the dark stuff is injected, the Pet Scan can see in what part of your body the cells are eating the glucose greedily. Anywhere abnormal tells the docs that it's cancer.
In my case, yeah, they saw that there was an entity in my anus eating a lot of glucose. And there MAY be a teeny tiny lymph node also eating glucose which would be a sign that the cancer had spread to the lymph nodes near the tumor site...in this case, in my groin area. But the lymph node was so teeny tiny that a biopsy couldn't be done, nor could they get a clear read on it.
So the decision was to go with the idea that yeah it had spread to lymph area. That meant I was gonna get radiated in both places: backside for the entity and front side for the lymph nodes. In for a penny, in for a pound, as no one says now-a-days.

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.

The Diagnosis: Risky business

Several anxious days of waiting. If it was cancer, I knew what to expect: Rectal Cancer. Wasn't that my rectum, the doctor has been exploring so diligently?
But the call surprised me: it was anal cancer. HOW EMBARRASSING! Who wants to say anal? Breast cancer (many years before) had been hard enough. But everyone was used to that. Nobody got anal cancer. Just me and Farrah Fawcett Major. And (sob) look what happened to her.
I feverishly began to Google. I found out it was a rare cancer. Very treatable (although the treatment is grueling), most common in women my age AND related to certain risk factors. One of which I have here illustrated.
DON'T DO THIS.

The Biopsy

I was sent to have a biopsy. It was done right there in the office under local anesthesia. The surgeon snipped a little sample. OK, it hurt a bit, but not too much.
The doctor said it didn't look 'usual'. But I chose to ignore that. Still there would be days and days of anxious waiting for the results.