Let it flow, let it flow...

The good news is that I'm still cancer free! My doctor gave me the results of my recent PET scan yesterday. My next scan will be in a year, and after being cancer free for 5 years, I won't have any more PET scans. Woohoo!

I have a few side effects from the chemo and radiation, but I didn't get the worst side effect, which is death, according to the documents my doctors gave me. That's a really long-term side effect, that's tough to beat. Some of the side effects that people have while living came on a few months after the treatments stopped, and others are gradually happening. To tell the truth, I don't know if some of them are from the treatments, or just because I'm getting older, when shit starts happening at an alarming rate - that also happened when I had my colostomy bag. 

The side effect that I got a few months after treatments stopped is peripheral neuropathy. I wrote a lot about it in the post called "No Pain, No Cane." The condition has settled down a lot from the original pain, which often kept me from sleeping. I'm still on pain meds for it, but I recently went from taking six Tramadol tablets a day to only three. Because of the neuropathy, I also have foot drop, which I have mistakenly been calling "drop foot" since I first got it, in my left leg. "Foot drop is caused by weakness or paralysis of the muscles involved in lifting the front part of the foot." It's often caused by a nerve injury, which is what peripheral neuropathy is. Most of the time, it doesn't bother me. Sometimes, when I'm walking, and I can hear my left foot smacking down on the pavement, I become more aware of it. Sometimes, it causes me to limp and I am more aware of it. Once, when I was walking the dogs, I thought that we'd jog across the parking lot, but I quickly discovered that jogging, when you don't lift your foot up all the way is dangerous. My toes rolled and dragged on the pavement, and I almost fell down. I'm happy to report that my jogging days are over. I still go to the gym several times a week and use the elliptical trainer which is great for foot drop, because you don't have to lift your feet off of the foot pads. 

Because of some of my side effects from the radiation, I am allowed to work from home full-time, which I really love. I work at my computer, and my dogs lie on the floor around me. For my lunch break, I take them on a walk. I have to be really vigilant and avoid meeting up with other animals, because my three dogs' combined weight is a lot more than my weight, so they can pull me where they want to go. The other reason for that is because I've never trained them to obey me. So it's my own damn fault. A few months ago, my neighbors were coming out of the wooded area where my dogs and I were headed, and we met in the narrow street. I stopped and moved over to the side and was holding back my dogs, but instead of moving on towards their house, my neighbors stopped and held back their dog, who was lurching towards us and growling. That irritated my dogs, and they started pulling me towards the neighbor's dog, and somehow, I fell backwards and hit the right side of my body, including my head, on the asphalt. I remember hearing my skull smack against the street. Finally, being hard-headed paid off, and I avoided injury, except for some bruises. The husband quickly took their dog home, while his wife helped me up.  They promised to give me a wide berth anytime they see me walking the dogs. 

The main side effect which allows me to work from home is a sense of urgency to get to the bathroom. I did not relish the thought of having to jump up from my desk in the office and sprint to the women's restroom in front of all my co-workers, several times a day. And what would happen if my foot drop tripped me up, and I ended up on the floor instead of in the restroom? I foresaw some potentially embarrassing moments ahead. "Clean up in aisle nineteen!" Unfortunately, the quick move to the restroom from the sense of urgency is sometimes rewarded by the inability to let the flow go. My colorectal surgeon said that I have a posterior prolapse or rectocele, which can be the result of the radiation. Radiation can weaken the tissues between the vagina and rectum, and that makes the rectum bulge into the vaginal wall. The rectum goes from looking like a narrow stream which flows to a dam, to looking like a wide lake with tributaries which are below the dam, and the poop sits in the tributaries unable to let gravity work. When my surgeon was telling me about the condition she said, "And you'll see women with this condition squirming around leaning to one side and then the other or inserting their fingers into their vagina trying to push the stool out." And I thought, "I wonder where I might see these women."

Radiation has also caused problems with peeing, and I can no longer pet the dogs and pee at the same time. And I can't just pee when I want to; I have to concentrate. The only time that this doesn't seem to be the case is when I cough, and then, of course, I can't stop myself from peeing in my pants a little. But I think that happens to old people, too, so I have two excuses instead of one.

Next, I would like to tell you about my sex life. However, I don't have one, so there's not much to say. Based on what they told me that radiation did to my nether region, it now lives up to the other meaning of the term, which is "Hell, the Underworld, or any place of darkness or eternal suffering." The closest thing to intercourse I've had was briefly using the dilator that Dr. Big Hands gave me after I'd completed radiation. I have two dilators, and one is a little larger than the other. They are not very big, are made of smooth, medical grade plastic, and are flat on one end and rounded on the other. They are supposed to help stretch the vagina, after it's been made useless by radiation. You insert one (usually starting with the smaller one until you're ready to try the big, one and a half inch diameter model) three times a week for 10 minutes. And you let it sit like that and not move. From what I remember, it is a lot like real sex. 

My other side effect is depression, which I am being treated for at the cancer center where I received chemo and radiation - and the therapy is free, which doesn't depress me at all! Although I am truly happy to be alive and grateful that my side effects aren't worse, sometimes, I get depressed. And I worry about the old cancer coming back, or a new type of cancer appearing. And I wonder if I'll be lucky again. Reading or hearing about someone dying of cancer saddens and worries me. I think about how they probably suffered and didn't survive the treatments, didn't survive the cancer. I think about their family and friends who miss them. I think about what an awful disease cancer is. I don't want you to think that I'm clinically depressed and can barely function. I'm really good most of the time, I just get down sometimes. But, I always get back up. After coming this far, I'm not going to let something like cancer keep me down. 

After Reflects

It's been a year and a half since I last wrote, and some people have asked about the blog. So, I'll try to bring you up to date with a lot of rambling, random thoughts for filler, because I'm out of practice. 

The last time I wrote was about a weekend visit to the ER at the hospital, where I'd had some of my treatments and my cancer surgeries. I still think about that weekend, and it still creeps me out. My bed was in a corner of the floor with two other beds, and there were curtains to separate each area. I was the one constant in that corner all weekend. People came and went, but I remained, holding on to my purse, so if I fell asleep, no one would steal it. I didn't see my "roommates" faces, but I could hear them talking, usually while I was trying to sleep. A few of them had several, loud talking visitors, and one just talked to anyone who walked by and would listen - he had broken both his ankles in a fall, I think. There was something really unsettling about the man from Cincinnati, who was next to me for a few hours. The whole episode of his stay there was like a John Waters or David Lynch movie which gave me an uneasy, slimy feeling. 

He was from Cincinnati and came to Louisville to "find" himself. I don't recall who he said that to, but I remember hearing it. I also heard him on the phone begging some woman to reconsider and take him back, and all would be well. This went on for a while, then he got pissed off and hung up on her. A few minutes later, his wife came in, having arrived from Cincinnati. (I never did find out what brought him to the ER.) I think his wife may have brought a friend and the friend's daughter, although I'm not sure why. She couldn't get much privacy with her husband, because the friend talked non-stop very loudly. I could tell she was intelligent and cunning, but her grammar was bad. The only thing I remember her talking about was how they were going to put one of the babies at the day care in a dog crate and take a photo to put on Facebook, but they changed their minds. I'm not sure if they changed their minds about the entire thing or just about taking the photo. How lucky the parents are whose children are in the care of this woman! At one point, the mother and daughter went off to find some snacks, so I was able to see them walk down the aisle. Although the daughter was only about 11, she was well on her way to being as large as her mother, and was learning some important tips on handling babies.  

I haven't had any more episodes in the ER and have had several PET scans since I last wrote. All have come back showing no new cancer, although I was worried when the last one mentioned some very small spots on my lungs that someone "might" want to take a look at on the next PET scan. My oncologist was going to do the next PET scan a year from then, but because of the spots, I asked him if we could do it sooner. So, he set up the next scan in six months. My colorectal surgeon said the spots were nothing to worry about, and that the radiation oncologists have to say things like that in their reports as a CYA. But I have read that when anal cancer recurs, it comes back in the lungs or liver, so I want to be vigilant. 

I bought a sculpture from my friend, Bob Lockhart, at the Cherokee Art Fair last year. It's some kind of strange, imaginary animal which was named Norman. I have renamed him, Ned Norman, since NED means "no evidence of disease" in medical jargon. Occasionally, I'll stop by Ned and ask him to keep the cancer away. Ned looks very harmless and shy, but I'm sure he's taking care of me. 

And now the six months have passed, and my next PET scan is this coming Wednesday, March 9, which may already be past by the time I publish this. The worst thing about the PET scan is the diet the day before, and when they slice my finger to get my blood sugar level. Then, they inject me with something radioactive, and I lie in a bed and watch funny TV shows for about 45 minutes, so the radioactive material can course through my veins. The test itself used to be difficult, too, because I had to hold my arms still above my head while lying down for 30 to 45 minutes. This guarantees really toned arms, but trying not to move in that position for that long makes the test seem twice as long as it is. Instead, the technician now has me put my arms down at my sides, and he wraps a band around me to keep my arms from falling down - the board to lie on is not as wide as I am. The diet has none of the things that I like to eat, like chocolate, sugar, Girl Scout cookies, dairy, spaghetti, cheese, fruit, and coffee with cream and sugar. Breakfast the day before the scan is a bit of a drag, because I can't have cereal or yogurt or coffee. So I have to have bacon and eggs, which I like, but don't have a lot of time to fix before work. And I'll miss my coffee. Basically, I can eat meat, vegetables, mushrooms, and a green salad with oil and vinegar the day before the test. After the test, which I always schedule first thing in the morning, I hurry home and have some coffee with cream and sugar. This time, I won't get the results until March 14th. 

On March 18th, I am having my first colonoscopy, since the one I had when I was first diagnosed with cancer. I will have to have them every three years now. My doctor wanted me to take the pills, but I'm afraid of them, because I've read that some people who didn't drink enough water with them ended up on dialysis the rest of their lives. I've bought the MiraLAX, two 32 ounce bottles of lemonade flavored Powerade and some juice drinks that aren't red, orange, or purple. I need to get some lemons to bite on, before I take each sip, and I'll need to get the stuff really cold, before I drink it. I also have straws to bypass my taste-buds. My brother told me that he's having his first colonoscopy this year, but he only has to drink two five ounce bottles of his brand of salty-sweet, liquid cleanser. I'm going to ask my doctor what that is. 

Next time, I'll discuss the side effects from the treatments, so you'll know what's going on when you see me limping by with my drop foot.