Turn me on tonight, cause I'm radioactive

In preparation for the upcoming radiation treatment, I have been reading up on the side effects. I don't know if this is a good or a bad thing to do, or maybe a little of both. I want to know what the possibilities are, but I don't want to set an expectation that these things will happen to me, or worry that they might. I don't want to start imagining I have a problem that I don't really have. 

There are short and long term side effects. Some of the short term side effects are fatigue, diarrhea, nausea and vomiting, hair loss in the area of treatment, sexual changes, urinary and bladder changes, and skin changes. 

Fatigue is apparently fairly common during radiation. It can last from 6 to 12 months after the treatment, or for the rest of your life, or in this case, my life. Doctors can prescribes psycho-stimulants, or uppers, for rest-of-the-life fatigue. That doesn't sound good to me. I tried uppers when I was in college and had to drive back from Wisconsin to Kentucky one night to get to class the next day. As I was driving, I woke up my roommate - who should have been awake anyway, so she could talk to me and keep me alert! - because I thought I saw a moose on the highway. Instead of taking uppers again, I may just opt to lie on the couch and watch movies 24/7 with my dogs. One website suggested finding a support group to discuss how to manage fatigue. Won't we all be too tired to show up or come up with any ideas? One suggestion to combat fatigue was to exercise. 

Diarrhea should be interesting with the colostomy. I may need to buy some heavy "doody" ostomy bags that are thicker and longer, so I don't end up like the Sorcerer's Apprentice. The website I read from suggested eating 6 small meals a day. I am going to look into adding a small frig and some shelves in the bathroom near the toilet, although the jogging from the kitchen to the bathroom might be good exercise for my fatigue. The website suggested that I take care of my rectal area. Thanks for the advice, but it's been taken care of already. 

Nausea and vomiting, I am familiar with after my two rounds of TIP chemo. I have vomit bags in every room, and like a nurse, I will be able to measure what goes in the bags because of the handy pre-printed measurements on them. Nausea and vomiting can occur 30 minutes to many hours after the radiation. Luckily, it says that I will most likely feel better on days that I don't have radiation. Another reason to look forward to the weekends!

Hair loss is one side effect that I don't need to worry about, at least on my head. You can't lose what you don't have. However, since the radiation will be on my groin, I may end up with a bonus side effect of a free Brazilian wax job without the wax or the expense! But, that part of my anatomy is not exactly in view anymore, since, one, I wear clothes in public, and two, the ostomy bag hangs over it. Another website I viewed mentioned that if you had radiation on your groin, you might lose your "public" hair, but I think they meant "private."

The sexual changes take many forms, one of which is a smaller, shorter, narrower vagina. Women can become infertile, go through early menopause, have vaginal dryness or atrophy, or lose interest in sex. One of the reasons they lose interest in sex is because it hurts like hell now that they have a small, dry, short, narrow, atrophied vagina with incredibly thin walls. Mine even has a tumor (or maybe not!) and a fistula to add to the chaos in the tunnel of love. Several websites mentioned a "dilator" that can be used to stretch the vagina walls. Apparently, you keep getting larger sizes until you've reached the size that will accommodate your herculean partner, or your herculean doctor's hand. Radiation can't touch me on most of those issues, because I'm already there. However, my radiation oncologist has already warned me that he will need to do a pelvic exam after the radiation is over, and "unfortunately, it will really hurt." That's one appointment, I may not show up for. At the least, he should give me some muscle relaxers to take beforehand. We're talking Dr. Funkinated with blood up to his elbows after he does a pelvic exam with his massive hands!

Urinary and bladder changes include burning or pain while or after urinating, trouble starting to urinate, trouble trying to empty your bladder, needing to urinate frequently, cystitis, incontinence, urinating frequently during the night, blood in the urine, bladder spasms which are like painful muscle cramps. These all seem rather straight forward, and for now, I'm going to hope that they won't be radiating me near my bladder. As it is, I am sometimes getting up 3 times a night to pee. I think that's enough.

The last short term side effect we will discuss has to do with the skin, which is our largest organ. My largest organ is a lot more wrinkly and saggy than it once was. Radiation will make it even more so! Plus, it will become even less elastic. Apparently, there is a race going on between my largest organ and my small, short, narrow vagina to see which one can age quicker and become more useless. Radiation can cause the skin to have the look and feel of a sunburn. It can cause itching that makes a person scratch so much that he/she/me develops infections. The skin can become so dry that it peels just like it does when the skin is sunburned. A person's skin can peel off faster than it can grow back which will result in ulcers or sores. The skin can become wet, sore, or infected. One website said to take lukewarm showers, wear soft clothing, and stay out of the sun and tanning booths (I wondered if people would really need to be told that and realized that there are some who would, and possibly some who would still go to a tanning booth.) It also said "do not wear clothes that are tight and do not breathe." Why not just follow the last suggestion, stop breathing and bypass having radiation and getting any of its side effects?

Our next topic will be the possible long term side effects of radiation. Two of the more exciting side effects are secondary cancer and death! I think we can all agree that death would be a very long term side effect of radiation.

Round 2 or Mass in the Ass can kiss his ass goodbye or Mass in the Ass can eat sh*t and die

In this corner, weighing in at 130 pounds, formerly 149 pounds, bald and pale, the challenger, Nasty Nan. And in the other corner, weighing in at an unknown number, but being a very large tumor, the defender, squamous cell carcinoma of the anus, also known as cancer or Mass in the Ass. 

Nasty Nan has worked up a strategy with her trainers, the colorectal surgeon and chemo and radiation oncologists. She has a colostomy - to divert the waste from the fistula - which can hopefully be reversed next year. She has undergone one round of aggressive chemotherapy and is currently getting the second round - both done inpatient - to reduce Mass in the Ass to a weak, helpless, minuscule blob, if there is even anything left after Round 2. In the process, she will also be weakened, but during the following few weeks, she will gradually rebuild her strength, get her blood levels back up, and be ready for additional chemo and radiation for 5 weeks. The chemo will make her body more receptive to the radiation and will be administered outpatient in the 1st and 4th weeks as well as via a pump for 96 hours. The radiation will get rid of any remaining cancer. Because she's part of a clinical trial with T.I.P, and because the other people in the clinical trials who had T.I.P had metastasized cancer and were not able to get additional chemo and radiation, she is a guinea pig. She wants to win this fight against Mass in the Ass, so she's taking a chance to get a shot (actually, she's had many shots, but they've all been via her port) at a cure.

Mass in the Ass is a weaselly, sneaky, chicken shit tumor which apparently started in Nasty Nan's rectum and pushed through to the vagina wall, causing a fistula in the process. Mass in the Ass was hoping to keep growing and go unnoticed, but Nasty Nan found out and is fighting back. Nasty Nan may be bald and skinny and tired, but don't count her out. Her Dad was a lawyer whose nickname was "Battler Brown," and the apple did not fall far from the tree. Not only does she have a good team and winning strategy to knock out Mass in the Ass, but she also has lots of supporters cheering her on. Her family has been and continues to be there for her with whatever she needs. Friends are donating time, food, and money to her recovery. And they are visiting, calling, emailing, sending cards and gifts, and posting messages of encouragement, prayers, good wishes, good vibes, and love on Facebook. All this support makes a formidable army, and Mass in the Ass is no match and is in deep doo-doo, at least figuratively, now that Nasty Nan has a colostomy.

Fistula, fistulie, fistulo, fistula, ha, ha, ha, ha, ha

Today is a holiday and like most other Americans, I am looking through my medical supply catalog trying to decide what type of ostomy supplies I want to buy. Do I want a drainable pouch or a closed end pouch, a one or two piece system, opaque or transparent, cut-to-fit or pre-cut barriers, convex or non-convex, mini or maxi length, and click or non-click closures? I have tried some of these out after getting free samples from the manufacturers and from the ostomy nurses at my doctor's office and at the hospital. 

I am getting used to wearing the colostomy appliances, but I still don't like it. I've heard that some people who had Crohns or diverticulitis and ended up with colostomies have found that they enhanced the quality of their lives. I'm thankful that I had the option to divert the waste from my fistula, while I'm going through the treatments, but I really hope that the colostomy can be reversed, when all is said and done. It takes more time to put on, empty, and remove the gear, and I'm using a lot more toilet paper trying to keep the end of the drainable pouch poop-free. Even though my stoma is low, the top of the pouch is above my waist, which requires that I either wear pants with a waistline right under my boobs, or shirts that cover the top of my waist. I'll take what's behind door number two. 

Not long after I came home after the colostomy surgery, my bags leaked every day for a week, and I could not figure out what I was doing wrong. The leaks started after the home health nurse visited me and proclaimed that I was an expert who did not need a home health nurse. I had to put on a new bag each time I had a leak. Health insurance companies will only pay for 20 drainable bags a month, and I was going through 2 or 3 a day. Plus, some of the leaks happened when I was away from home. Luckily, I took an extra bag with me, except for once when I was in Kroger's parking lot getting ready to shop, and had to go back home. Actually, even if I'd had an extra bag, I probably would have gone home to change the bag rather than change it in a public restroom. (The thought of taking a flight across the ocean and having to empty or change a bag in an airplane restroom is unfathomable.) 

When I went back into the hospital for the chemo treatment, I contacted the hospital's ostomy nurse, and she visited me. She determined that the shape of my belly had changed (less swollen) since the surgery, so that there was a dip in the area at the bottom of the bag where it adhered to my stomach. The dip was causing the seal to break. Her fix was to start me using a two piece system and adding a skin barrier ring, which sticks to my skin and to the bag. This worked, but the two piece systems have plastic rings on the barrier and the bag, which snap together and they add a little extra weight to the setup. I don't need any extra weight to lug around. And I don't like being aware that I am wearing colostomy gear. And when it comes to opaque or transparent bags, I want opaque. I'm pretty sure there's not going to be anything unexpected in the bag, and I'd rather not view the shit every time I go to the bathroom. And now, I sleep in my underwear, because when I move around in bed, the bag flops around. I don't like sleeping in my underwear; that area needs some breathing time and it's not getting much.

My team at work sent me a really nice Visa gift card last week, and I used it to buy a bigger purse - which does not smell like a rotten banana - so I can carry extra ostomy supplies. One of the manufacturers of the ostomy supplies sent me a bag for carrying supplies and it has their name on the outside. Maybe, I could just get a tattoo on my arm that says "I poop in a bag made by 'their name here'."

I was thinking the other day that in spite of the fistula which precipitated the need for the colostomy, I am grateful that it developed. For those of you who don't recall, a fistula "is an abnormal connection or passageway between two epithelium-lined organs or vessels that normally do not connect." In my case, the fistula is between my rectum and vagina and was caused by the tumor "breaking on through to the other side." If the fistula had not developed, the cancer probably would have gone unchecked. A word to the wise: discuss changes in your bowel habits with your doctor and request that your doctor do a DRE (digital rectal exam) at your annual physical. If you're not getting annual physicals, start now. I had noticed changes (frequency, color, and size) in my bowel habits for several months, but thought that that, like a lot of changes in my life, was because I'm getting old. It wasn't until the discharge appeared that I went to see my doctor. As they say, "hind"sight is 20/20.