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?

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.

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 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.

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.

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.

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.