Ostomy, why not take ostomy?

I tried to have a normal weekend, since I may be in the hospital next weekend. Yesterday, I went to two groceries, donated to the Kentucky Education Fund by buying another losing PowerBall ticket, took two walks, sat and talked with two friends who brought me some food, paid some doctor bills, paid my other bills, went over what I need to do before I start the cleansing on Tuesday.

Today, after working for several hours, I was at the cancer center from 1:00 to 4:45 meeting with the chemo oncologist and radiation oncologist. I also met with several nurses, an oncology pharmacist, and afterwards walked, with my good buddy who went with me, through a torrential downpour (with no umbrellas) to get to the colorectal doctor's office to try to talk to her nurse about the FMLA she had sent in, because my case worked said it's invalid.  The nurse wasn't there, but I left a letter which I'd prepared for her, and she called me this evening.  

FMLA is a nice way to protect your job, but you need a secretary to keep up with it. The case worker doesn't like what was filled in and the nurse doesn't like that the case worker doesn't like what she filled in. This makes me nervous and I should not have to worry about it. Both people are telling me something different, and I can't fill out the form myself, so I have to rely on them to keep me "legally" employed. When I start chemo treatments, that doctor's office will need to fill out another FMLA form. FMLA for cancer is not easy with all the doctors involved and the nuances. I don't have time to coordinate it with a full time job, cancer, a house, pets, and Pretty Boy Rhoid. And soon, I'll be taking care of a bag of poop hanging from my stomach. 

I saw the radiation doctor first and he believes I have a 100% chance of a permanent colostomy. There is not much wiggle room there. He thinks that the radiation will increase the size of the fistula, so that it cannot be surgically repaired. This news did not cheer me up. He also did several painful exams of both my rectal and vaginal areas, which made me do some deep breathing, which didn't really help a lot, and then he used some long, thin, needle-like device to shoot tiny silver pellets into me, which I think will be used to determine the marking for the radiation. In spite of the pain and bad news (he is wrong!), he is a good guy and his nurse is delightful and compassionate, and I liked them both. He has an accent, so when he told his nurse to help him take off his gloves which were bloody, I thought he said he was "funkinated", but he said contaminated. I like my new word better. I am not going to believe the colostomy is permanent until my colorectal surgeon says she can't fix it. In six months, they may have something new to use anyway - hey, I can dream, can't I? After the radiation oncologist told me about the radiation (25 treatments over 5 work weeks that will take < 10 minutes), we discussed the need for a PET scan to see if the cancer has spread.  

Then I waited some more because the radiation doctor had held me past the meeting time with the chemo doctor, known as the medical oncologist, so the chemo doctor was late getting in to see me. When he arrived, he came with the radiation oncologist who said that they had discussed a possible clinical study for me. Then he left, and the chemo doc explained it in detail to me. Because of the size of my tumor (they keep reminding me that it's "REALLY BIG") it's a stage 3 tumor. If it has metastasized, it becomes a stage 4 - hint: in cancer, higher stages aren't desirable. The treatment is called TIP and is named after the three main common/short names of the chemo drugs used. Sometime after my colostomy heals, and the PET scan is done, I would be hospitalized for 2 - 3 days and get the three drugs. I could have all the ice cream I wanted (no, wait, that's for a tonsillectomy.) Then I would not get any treatment for 3 weeks. Then I would go back in and do another cycle, and since I'd already had one cycle, I would really be looking forward to the 2nd cycle and more endless ice cream and delicious hospital food which I might be too nauseous to eat! I believe they said that they would stop after 2 treatments, although I thought that he mentioned 4 treatments in some context, but I don't know why or what would necessitate that. The risk is toxicity to the blood which would lower my red, white, and not blue, but platelet counts, which would make me more susceptible to infection. They give shots for the blood count issue and all kinds of drugs to help with side effects. This regimen has removed the cancer totally in the 8 patients they have done it on, except for a person whose immune system was already compromised.  The difference is (as far as we know until they do the PET scan) that all those people's cancers had metastasized. I am not sure if they said that I could still try it, if I wanted, if the cancer is only in one location, or if they would just start me on the regular chemo/radiation treatments instead. I would still have to have the regular regimen of chemo and radiation after the TIP procedure anyway, because the regular treatment protocol uses different chemo drugs and the radiation should get rid of any cancer cells left "behind."

I finished with the chemo doctor, who was very compassionate and honest and whom I also really liked. A very nice doctor, who had been in the room while the chemo doctor was telling me about the TIP procedure, asked me some questions about how this all started. If she had just read my blog, she would be up to date, but apparently, word hasn't gotten out yet. I did give her the name of my blog and she said she wanted to read it. I think she liked the catchy title. Next, an oncology pharmacist came in and told me all about the side effects of the TIP drugs, none of which I can remember and none of which would make me want to get out of bed in the morning, unless I had to empty my "pouch" - remember what that is? Everyone told me that I will lose my hair, but I'm more concerned about losing my mind, although there doesn't seem to be a lot left.  While she was talking to me, I noticed the phlebotomist come in behind her and start getting out the blood drawing tools: saw, pick-ax, the rack, blindfold, bucket, etc..  She said if she used my port it would hurt, since it's new. Great! Choose your pain! So I let her draw blood from my arm, but this woman is great!  I didn't mind at all, or not much anyway. She is the same woman who drew it last week and she didn't even have a pencil or paper! She doesn't make me make a fist, my criteria for a great phlebotomist! I told her that I liked that and she said, she didn't want to have to watch where the fist was going while she was drawing blood. Seriously, do you think I'm going to try to punch someone who has a needle in my arm!!! My good friend and neighbor, who had gone with me today, held my hand, and she will not be able to use her hand for a while. While the oncology pharmacist was winding down about the drugs' side effects (my mind was gone and I was distraught by then), my friend, who is more of a fun-loving, curious child than I am, started playing with the foot pedals of the examination table that I was lying on. The phlebotomist came over to try to rein her in, but then they started playing musical table, while I tried to listen to the pharmacist as my body was being raised and lowered.      

This ends my update for today, and there may not be another one, until I get out of the hospital with my new buddy, the ostomy bag. I'm going to have to name him and/or the stoma. Please send suggestions, and I will post them on the blog, if they don't irritate me, or if they're not better than the names I come up with. I'm wiped out and tomorrow during my "cleaning" for the colostomy, I will just be wiped. But at least it's something I already know how to do and don't need any training on. I don't know if I told you that my colorectal doctor's ostomy nurse sent me home with a great (I assume) DVD on colostomy and ileostomy and the pouches. I have not had time to watch it yet, because of dealing with FMLA papers, and the nurse said to wait to watch it anyway.  I'll bet it's Academy Award winning material. Let me know if you want to come watch it, and I'll provide the poopcorn.    

Wheel..........of..........Ostomy!

In case you're wondering - I know I am! - my visit to the colorectal doctor was a bit stressful yesterday.  I didn't really hear much that I wasn't expecting, but it was still troubling.  

First, I still really like my doctor and her staff. Everyone is very kind and compassionate, but they have a sense of humor and are not stuffy. They are used to dealing with assholes, and you need a sense of humor if your job involves that on a daily basis. 

Before "my" doctor came in, a young male doctor came in to gather some information, or it may have been a quiz to see if I remembered what I'd told everyone else this past month. My brother and sister-in-law were there with me (as they have been for all my doctors' meetings) and they now know everything there is to know about the size of my pre and post cancer stools, how frequently I pooped before the cancer, how frequently I poop now, what surgeries I've had, the drugs I take, my hemorrhoid's name, and other fun facts about my incredibly exciting life, both pre and post cancer. I may let them answer next time to see if they've been listening. After I'd told him all the correct memorized answers, I asked him a question. His response was that he really didn't know. I accused him of being a man off the street wearing a dress shirt and tie with a white jacket who just came in to get some cheap thrills by asking me all the personal questions in front of my family. 

Then "my" doctor came in and sat up on the examination table and went over many things, including the need to divert the waste from the fistula by performing an ileostomy or colostomy on me - next Wednesday, for anyone who wants to come watch from the grandstand and drop Junior Mints in my stoma. Which type of surgery I get will be determined by my doctor, my digestive system, the type of chemo I am going to have, and probably some other factors that I can't recall or never heard. An ileostomy is when they make the stoma (Greek for "mouth") in the small intestine (on the right side). The stoma made from the small intestine is smaller than one made from the larger intestine, because the small intestine has a smaller diameter than the large intestine. The ileostomy stoma is really unattractive and looks a bit like a red, wrinkly plug. You can Google "stoma" and see some photos, but I don't recommend it. How many of you just got back from Googling "stoma" and no longer have an appetite? I am not really sure what the colostomy stoma looks like because the pictures were making me ill, but I think it's wider. 

I need a disclaimer here. I am not intentionally misleading you in my synopsis of the treatments, therapies, and surgeries, but all of what I report may not be accurate. I'm going from memory and notes, and my memory is terrible, and I can hardly read my own hand writing. So do your own research, if you find yourself in a similar situation. And pray to God that you don't find yourself in a similar situation.

Okay, so it's better to get an ileostomy instead of a colostomy, except if the chemo gives me explosive diarrhea. That could cause severe dehydration because all the salts are removed from the waste. I may have not said that just right, but I do believe that they said that ileostomy + diarrhea = severe dehydration. I just went to read about ileostomy to verify what I'd said, but I got sidetracked about emptying the bag. The site (and the nurse in my doctor's office) said to stand facing the toilet, which is fine at home, but in a women's public restroom, aren't other women going to wonder why I'm standing facing the toilet for any length of time? Not to mention the cursing they are going to hear, followed by hysterical laughter or possibly tears. The rest of the event involves crouching over the toilet a bit, putting some toilet paper in the toilet to keep splashing down, cleaning the inside and outside of the tail of the pouch with toilet paper (apparently, there will be no savings here at all!) and closing the tail of the pouch. Gee, it takes an already not one of my favorite things and makes it more labor intensive, not to mention bringing me in closer contact with the poop. I know my shit stinks! My favorite sentence on the ileostomy site was this: "Ask your nurse about spraying non-stick oil inside the pouch to keep stool from sticking to it." Me (knocking on the stall next to mine in a public restroom), "Excuse me, but do you have any PAM Organic Olive Oil No-Stick Cooking Spray on you? I seem to have left mine at home, and my stool is waaaay stickier than I like." 

And I think it may be more likely that a permanent ostomy will be in the cards, if I wake up with a colostomy rather than an ileostomy. But, there are a lot of factors involved in the permanent scenario. One is how badly the fistula expands from the radiation. It can become irreparable. Basically, I will probably have to wait until the treatments are over to know whether I need to get some designer ostomy pouches or not. But, I am very confident that if there's any way to resection my insides and get me back to sitting on the toilet instead of crouching over it, my doctor can do it. The nurse showed me a few ostomy pouches in her office which had very clever and original sayings like "Shit happens!" and one had a bunch of monkeys in a jungle scene - I am unsure of the meaning of that one. I do recall that after the chimpanzee show at the St. Louis Zoo, when everyone filed out on either side of the gorilla enclosure, the apes would joyfully fling poop at the crowd, and there were not many places to run to while in that huddled mass. So, if I were you, I would stay on whatever good side of me you can find - definitely not in front of me, though - after I have the ostomy surgery, unless you've got an escape route. The nurse also pointed out that the people who had made the pouches had sewed the "tails" shut, which meant you have to take the designer pouch off, before you empty the poop bag. At the time, I agreed with her, that that was a bad design. But upon further reflection, I think it's probably smart. Because what if the fabric pouch slides down while you're cleaning out the bag? Then what? I don't think I'd be carrying that fabric pouch around with unsalty, stickier than usual shit on it. There's so much to think about, and so much to learn. But it's late, and I've got to go get some food (compliments of several cooking friends who deliver!) and enjoy the last few days of wiping my ass and not needing PAM Organic Olive Oil No-Stick Cooking Spray for a few more days. 

       

This is not the first time I've needed a sphincter on my brain to shut off the flow of questions

Tomorrow, I officially meet with my colorectal surgeon. I met her briefly before the dueling surgeons performed biopsies on my lower 40, or lower 63 in my case. I believe tomorrow's meeting may involve the following hot topics: 
1.  Colostomy - no sphincter means no control, and no control means shit happens
2.  Combining colostomy surgery with chemotherapy and radiation - what doesn't kill you, makes you wish it had
3.  Gas after a colostomy - does it make a noise and will the bag explode, if I don't open it and let it out?  Is that where the term an old gasbag comes from?
4.  Colostomy fashion - who sells designer bags? If no one does, is there a market for this?
5.  The flu and a colostomy - if I get the flu and have it coming out of both ends, won't it be easier with an ostomy bag? Will I even care?
6.  Will I need another purse (one that doesn't smell like bananas) to carry my ostomy supplies? What are ostomy supplies? 
7.  Will I be able to enjoy sex after the colostomy surgery, even if I wasn't enjoying it before the colostomy surgery?
8.  What are the annual projected savings on toilet paper?
9.  When I walk my dogs, will we bond even more when they see that we all have poop bags?
10. How far down in my colon will the incision for the colostomy be made? 
11. Where and how do I empty my "bag"? Do I have to rinse it out? 

I also have questions about what stage my cancer is in: amphitheater, pageant in the market place, apron, restoration, or proscenium? What will determine if my colostomy can be reversed? Will I need to have more frequent tests for recurrence of the cancer, after it's "vacuumed" out of my body. If so, what kinds of tests will be needed? Will my insurance company call those tests, preventative (they pay) or curative (I pay)? How frequently will I need to have a colonoscopy? Will someone ever come up with a prep drink for a colonoscopy that isn't disgusting? What are the side effects of chemo and radiation? What long term effects are possible from chemo and radiation? Why does having cancer seem like a full time job? Have I met my deductible yet? 

The bride of Frankenstein and her Dyson

The port was put in on Thursday, and I'm still trying to get used to it. I feel as if I have been kidnapped by aliens who have implanted this thing in my chest, which isn't very comfortable. I wonder if I will ever stop being aware of it. It's very noticeable, not just because I can feel it, but when I move certain ways, it feels as if it's rubbing against some part of me that's hard, like a bone. I hate looking at it, because I can see it pushing through my skin, plus I can see the outline of the tubing that goes up to my neck. It's also starting to itch along with the mosquito bites I have been collecting. But I don't want to scratch it because it feels creepy. At the moment, since my skin is newly cut, I look like Frankenstein's bride. And if that monster comes near me, he'll be very sorry. I'm not in the mood!

Getting in a good position to sleep is a bit difficult, because I can't comfortably lie on the side that the port is on. I can lie on my back and my left side, if I move about gingerly. 

Nothing much new to report. I still feel fine and am able to get around and do my usual stuff around the house. My housemate now goes with me to take the dogs on their evening walk. He takes the two older, bigger dogs, and I take the young whippersnapper. I thought walking all three with my new incision might be risky. And I still take a walk around the block alone afterwards. I listen to the Blues on Pandora and have a variation of images that I try to concentrate on. One is pacman eating the cancer. Another is the Shuar tribe turning the cancer into shrunken heads.  And this evening, I pictured myself with a vacuum cleaner sucking up the cancer. It gets monotonous just picturing one of those methods, so having three helps me to be able to visualize it a bit longer. I have to admit the vacuuming one is quite satisfying, and I'm more familiar with it than I am with pacman or shrinking heads.      

You gotta help me, I can't do it all by myself (Sonny Boy Williamson)

After I took my shower this morning, I slowly peeled off the bandage. If you have been following this blog, you'd know that I didn't spend a lot of time staring at the port or touching it. I haven't looked at it since I took off the bandages. I am not sure at the moment how the hell I'm ever going to wash it, because I don't want to touch it.  

It's not as sore as it was earlier today, and I don't feel as if I have to keep my head tilted to the right at all times. I think the bandage was causing that sensation. I've been taking Ibuprofen and that helps.  

I guess the bummer part is that they still have to stick me to draw blood and administer IVs and chemo, but they have a bigger hole to poke - she said it's about the size of a nickel - but they don't have to worry about my veins cooperating. I'll let you know how it goes when they use it the first time, which will probably be for pre-op for my upcoming colostomy surgery. What fun, what glee!

I don't have much else to report about the cancer, Pretty Boy Rhoid or me, but I'd like to tell you about the wonderful family and friends in my life who have stepped forward in various ways.

My youngest brother and his wife have been faithfully taking me to my doctors' appointments, scans, tests, and surgeries since this started. They both work, so this is affecting their jobs, too. They have taken notes, asked questions, and given me opinions about the doctors we've been "interviewing," and we were all in agreement. My sister-in-law has been talking to her friends who are living with cancer to get some helpful hints about various aspects of treatment, side effects, and helpful agencies or support groups. My other sister-in-law has volunteered to take me to appointments when needed. My nieces have offered to help, too. Another brother has said he can take me to appointments, too. (On a sad, side note, my oldest brother committed suicide in January, but I know he would have done whatever he could have to help me, if he hadn't been sick. Between his suicide and this cancer, 2013 has not been a great year, but I plan on ending it on a positive note.) My aunt and uncle and cousins in other states are in touch - my uncle is going through cancer treatments, too. 

My coworkers have been picking up the slack for me, when I'm out of the office. My team sent me a big fruit "bouquet" today, complete with dark chocolate, covered strawberries. When I work (from home now) several of them have sent me messages asking how I am, and if there's anything I need. Several have offered to walk my dogs. One coworker is trying to start a non-profit organization for people with cancer who don't have a lot of family or friends to help them. A longtime friend took me to a movie. Another long time mutual friend gave us free passes to the movie and brought me dinner one night which lasted for two nights. A friend whom I've worked with at three different companies was coming over to bring me some homemade soup and cornbread and spotted me at a stop sign and followed me. When I stopped at a store, she pulled in behind me and blocked the alley. I didn't realize who she was, and thought I was being stalked. She told me the story and handed over two containers of soup and a big bag of cornbread. The soup was great and provided me with meals for days! The wife of a former coworker, who is now a friend, cooked all day and brought over the most amazing assortment of gourmet meals. She made spanakopita, Thai chili salmon, blue cheese quinoa, fruit berry salad, Greek potatoes, lemon garlic chicken with goat cheese, "crack" potato salad, buffalo ranch pulled chicken (spicy!), chocolate granola bars, chocolate brownies, caprese pops, and two more things in the freezer the names of which I have forgotten. I may gain back the 15 pounds I've lost, but it will be worth it. My neighbor sends me funny emails and tells me I'm her favorite author. Her husband has offered to go to the doctors with me to ask questions (he's a biochemist.) My best friend in high school and college sent me a book about healing. The class president from high school who I went from grade school through college with wrote to one of the directors of a cancer group in town that she knows and asked for names of doctors I should see for my kind of cancer - I ended up going with his suggestions, too. Another neighbor had asked his son-in-law who is another director at the center I ended up going to, if he could help me. Old friends call or write to see how I am. My Facebook friends send me encouraging comments and kind remarks. Some people put me in their prayers, some send me good vibes, and some send good thoughts my way. My best friend in San Francisco is in touch almost daily. Another longtime friend from high school who lives in southern California writes frequently, and her sister who lives here has offered to help drive me around. A friend I haven't seen since college has offered to let me visit him in his home in Florida. People have opened up to me with their cancer stories. My 83 year old friend who moved away earlier this year calls about twice a week to get updates. One of my ex-husbands has called to wish me well and his wife sends me messages on Facebook. My ex sister-in-law has shared stories about her Mom, who was a great buddy of mine and had several kinds of cancer throughout her life and lived to be in her early 80s. I've made a new friend with my story about cancer and she has offered to help with meals, drive me to appointments, and walk my dogs. Everyone I have reached out to has reached back with something to help me on my way. It's really opened my eyes to the good people in my life. It's also showing me that there are times when being totally independent and self sufficient won't work. Sometimes, you have to ask for help and get out of the way. 

Get bent

My brother picked me up at 8:15 AM, and we got to the hospital at 8:30, checked in, and waited for the fun to start. During the check in, the woman asked me if I wanted to pay part of the bill today. I said no thanks, I like to wait until they come in the mail and my insurance company has reviewed the claims and gotten a discount for me.  Plus, with all the procedures and surgeries I’ve got going on, I will meet my deductible soon.

They gave me one of those gadgets that you get when you go to busy restaurants, so that they just buzz you when it's your turn. Mine buzzed and they took me back to the “holding tank” at 9:00 and gave me one of my favorite things for the last time, I hope: an IV.  The holding tanks have one wall, which is behind you and curtains which you can draw around you, but of course, you can hear everything around you and everyone there can hear you. A nurse asked me a lot of questions, that I have already answered numerous time, but since no one is talking to anyone else, I had to go through it again. I enjoyed the question asking if I had ever had cancer.  She caught herself right after she asked it and we had a chuckle.  

As luck would have it, the man in the “tank” next to me was a talker, and I got to hear about what was ailing him and his past surgeries and how much beer he drank a day. It was impressive. I think it was a gallon. When they tried to put his IV in, everyone started chattering. “Wow, look at that!  Did you see that? The needle bent! I've never seen that before!”  The woman across from his tank, who was waiting for her son to come out of surgery said, “I could see it from over here. That was something else!” Then the nurses started talking about it, and a new nurse showed up to help. I got my brother to hand me my purse, so I could get out my iPhone and put my earplugs in and listen to the Pandora Blues channel, really loud.  It’s not just that I don’t like getting IVs, but I don’t like hearing about them, especially when things go wrong. My nurse had unknowingly raised my blood pressure when she started telling me that she had found a good vein. I don't want to hear about veins, rolling veins, good veins, or bad veins, either!

I think they started the procedure at 10:00.  I moved myself from my bed to a very narrow table, and they covered me in warm blankets.  The two nurses were very nice, and asked me to join their secret club and put on a light blue cap to cover my hair. They started the meds to put me in some state of not feeling pain and not be totally aware. I think I was out of it for some time, but then I was aware of the doctor doing something on my right upper chest area. I didn’t feel any pain, but I could feel pressure.  I love foreign languages, and I knew my doctor was from Syria, so I said a couple of words to him: Shukran, which means “thank you” and Habibi, which means “my love” or “honey”.  I am not sure, if I used them in a sentence. I was out of the operating room around 11:00.  They fed me in recovery and explained the port to me. I now have a rubber bracelet that says I have a Power Port and a little tag to put on my key chain like a Kroger Plus card. It does not have a bar code on it, so I don’t think it will get me any discounts. I got home around 1:00 PM.

I was very groggy when my brother brought me home, and I went into the sun room to take a nap, until I felt more awake, because I had planned to logon and work from home. I woke up at 4:45, still groggy. I made myself get up and my three dogs were very happy, because they knew dinner might be happening soon.

My chest is sore where they put the port in - it's bigger than I thought, (the port, not my chest!) but it is under the skin.  I think the large bandage which they put on it is pulling my skin, because I feel like I have to tilt my head to the right. I can take the bandage off tomorrow after my shower. I just read the Patient Guide to Power Port, and it is quite helpful. Under the FAQ, most of the answers say, ask your doctor.  The picture on the front of the brochure about it shows a grey haired doctor (I know he’s a doctor because he’s wearing a white coat and has a stethoscope around his neck.) He’s holding the Power Port card and smiling. He's getting ready to hand it to the lucky lady who just had the port put in. He’s smiling because he’s not wearing a Power Port, and he’s going to be paid for putting one in the lucky lady.  For some reason, they are not showing her facial expression.  It looks as if she may be tilting her head to the right. 

A codpiece for Pretty Boy Rhoid and big girl underwear for me

I have quit wearing sexy underwear. Actually, this was not a recent event, and I did not come to this decision alone. I knew something was wrong when the peeping tom outside my bedroom window started retching, when I was getting dressed one morning. Usually, he just chuckles. I wasn't sure that the sight of me in my sexy lingerie had prompted his illness, so I decided to discuss it with my roommates. Three were in agreement that I should quit wearing the lingerie, and one didn't care. Well, I expected the cat's vote, because all he cares about is rubbing against my ankle trying to trip me, getting fed every ten minutes, and asking me to open the door, even though he can get out the doggy door anytime he wants. But I was surprised that the dogs felt so strongly. Since I was out voted, I went back to my big girl underwear. And now that cancer has entered my life, it's just as well. It's not so much the cancer, but what has happened since my last surgery. 

Two days after the surgery, Pretty Boy Rhoid woke up after a long hibernation. I am not sure what the surgeons did to him when they went in there, but whatever it was has riled him, and he is now a very big part of my life. So, if I were inclined to wear thong underwear, for example, I would have to decide if I wanted to dress on the left of the right, like guys do. If codpieces were still in style, I would need one. Because of the recent surgery, I have not been able to use my normal hemorrhoid prescription. So instead, like most people, I went out and bought a large bag of fruity flavored freezer pops in assorted flavors. They are the worst tasting popsicle you can imagine, but I'm not eating them. Throughout the day, I am taking one out of the freezer and wrapping it in a paper towels to avoid freezer burn, and then I put it in my big girl underwear, sit for a spell, and give Pretty Boy Rhoid the cold shoulder, or whatever part it's hitting on him. Happily, this seems to be working, as he is not the huge presence that he was on Friday. He is backing down. With any luck and enough fruity flavored freezer pops, he will go back in his cave and sleep some more. If I were him, I would be quiet and not be a nuisance, because my colorectal surgeon is one of the top hemorrhoidectomy surgeons in the region. Also, I still have quite a few fruity flavored freezer pops left. 

Dueling surgeons

My brother took me to the hospital for the surgery the day after I met with the new GYN oncologist. The surgery was scheduled for 2:00 PM, but we had to be there at 11:00 AM. I sat there from 11:00 to 1:00, and then they called my name. I am not sure why we needed to be there in the waiting room for two hours, but maybe if some of the patients had chickened out, my time would have been moved up. So we were there in the lounge area with some Walmart shoppers and lots of vending machines and coffee, in case I needed to be reminded that I hadn't eaten since midnight.  

They called my name and I went back to my own, little, open walled room with curtains. They pulled the curtains, and I took off my clothes and put them in a bag and put on the gown, open in the rear. I was also told to spread the gown open, so I wasn't lying on it. Then, I met some really nice nurses who took my vitals and stuck an IV in me. I am always relieved after the IV is in. I always let everyone know how much I hate it, and where the best place is to stick me, but they usually do what they need or want to do. This one went in the back of my hand, and I am not fond of having needles there. I put my hand under the covers, so I wouldn't have to see it. I had two heated blankets on me and that felt great. They called my brother back and he sat with me, until it was time to go to surgery. The colorectal surgeon, whom I had not met yet, came into my "room" and introduced herself. She was very warm and had a big smile, when she introduced herself. I had already seen photos of her from my research on the various cancer doctor in the city, so I knew who she was. I told her I was so glad that she was helping me. She took my hand (I wouldn't give her the one with the IV in it!) and left. Actually, she did not take my hand with her, she gave it back to me and left. A few minutes later, the nurse came in and said she was giving me something to relax me, and that's the last thing I remember.  

The GYN oncologist and the colorectal surgeon operated in tandem to get deep core samples of the vaginal and rectal masses. I am grateful that I was asleep for this, and not just because it would have really hurt. The surgery was at a teaching hospital, and it's possible that there were students watching me in the grandstand. I'm sure snickering is frowned upon, but some people can't help themselves. Luckily Kramer was not there eating Junior Mints which might have fallen into one of the two openings. I hope I didn't say anything rude or inappropriate during the procedure, although I believe the anesthesiologist had put something down my throat to help me breath. My tongue is still numb on the tip. I probably rubbed it against whatever was in there the whole time the surgery was going on, like when you have a sore in your mouth and you keep rubbing your tongue against it. And luckily, I don't know sign language and wouldn't have moved my right hand anyway, because it had the IV in it.    

I think the surgery lasted more than an hour, but I could have been in recovery for some period and not been aware of it. I don't think we left there until about 6:00 PM. My nurse in recovery was a very nice, tall, good looking guy with a great smile who was a bit younger than I. The nurses only have their first names and last name initial on their badges, so I have not been able to stalk him as I would have liked.  

The surgery was a week ago, and I am still waiting on the results of the biopsies. Waiting makes time go  v e r y   s l o w l y.    

Is it that difficult to tell my ass from a hole in the ground?

I talked to many friends, doctors, and nurses when I was trying to find the best doctor for me.  Many people told me that it's really important to find the right fit for me and my situation. The first doctor I saw was a referral from another doctor, and of the three times we met, I felt comfortable with her one time. The other two times I felt rushed. Her bedside manner did not work for me.  

Part of my problem with finding the right doctor was that I was told that I had cancer in the vagina and rectum, so I wasn't sure if I should see an GYN oncologist or a colorectal surgeon. So after seeing a colorectal surgeon, I decided to go to a GYN oncologist. Several friends had steered me towards two cancer groups in my town, so I wanted to talk to doctors from both groups. When I met with the GYN oncologist at one group, he wanted to defer to the colorectal doctor who had done the recent colonoscopy and ultrasound.  But I told him I wanted his opinion, and that I didn't plan to go back to her. Both he and his nurse were surprised that I didn't like the colorectal doctor, and said that all her patients loved her. I didn't doubt that, and I didn't doubt that the doctor and nurse love her, too, but she was not the doctor for me. 

After the colonoscopy, the colorectal surgeon told my brother that she was 99% sure that I had colon cancer. The colonoscopy pathology report came back as "detached fragments of squamous epithelium with severe dysplasia/carcinoma in situ," and a comment, "A more significant lesion is difficult to exclude as invasion is difficult to rule out in these detached fragments." Carcinoma in situ is pre-cancer. When I left her office that day, after she had gotten the pathology report which did not show that I had invasive cancer, I was given three appointments for the following day: one with a chemo oncologist, one with a radiation oncologist, and one to get a port put it. I'm not a doctor and I don't even play one on TV, but I wanted better evidence of invasive cancer than what I'd been presented with before I had a port put in and started therapy. And that's why I was still on a quest for a doctor and talking to a GYN oncologist.  

When he realized that I wanted his opinion, he did another biopsy of my vagina. (At this point, I'd had a Pap test, two CT scans, two ultrasounds, a colonoscopy and an MRI.)  He tried to get a better sampling of tissue, expecting the report to show invasive cancer.  We discussed other doctors who were in his group and who would handle chemo, radiation, and putting in the port. The problem was that he was going on vacation for two weeks and wouldn't be able to do the more definitive tissue sampling until he got back. I liked this doctor and his staff, and I had heard great things about him and the doctors who would be on the team for my case, but I did not want to wait over two weeks, before the next test was done.  Meanwhile, the biopsy report he did came back as "ulcerated high grade squamous intraepithelial lesion with underlying granulation tissue," which is not invasive cancer.

When I got home, I contacted a GYN oncologist in the other highly recommended group I was interested in. I talked with her receptionist and got an appointment a few days after my appointment with the GYN oncologist who was going to do another biopsy after his vacation. I emailed my records to her. Later that day, she called me back saying that the oncologist wanted to move my appointment up. They asked me to come in at 7:00 AM, which I did. Thanks again to my brother and his wife for taking me and providing two other sets of ears. This GYN oncologist had asked several staff members to come in early to meet me and get me ready, and they were all gracious when I thanked them for coming in early. I knew right away that this doctor was the one I wanted on my team!  She was personable, kind, and she listened and let us all ask questions. We never felt rushed, and she talked to us in a comfortable consultation room, instead of having us sit on a chair, a footstool, and an examination table, as we had at the first colorectal surgeon's office. My brother, sister-in-law, and I were all impressed. This doctor had already consulted with a colorectal surgeon in her group, and they were ready to work me in to do surgery the next day. Together, they would get core samples of tissue from my vagina and rectum to try to uncover the invasive cancer that everyone thought I had, but no one could find. I told them to sign me up!  

Is that a banana in your bag, or are you just happy to see me?

After the colonoscopy, I was ready to eat.  My brother and his wife, who have been taking me to all my appointments and procedures, took me out to eat after I was discharged. Discharge is a common theme in my saga. Nothing remarkable or funny happened during our meal, but 11 days later, I got a surprise. I had been stuffing papers from the doctors' offices in my purse and was digging them out to file. One of the papers was wet. I dug deeper to see what was down there and pulled out a very black, over ripe, would-have-been-good-for-banana-nut-bread banana. Like a boy scout, I am always prepared, and I had put a banana in my purse the day of the colonoscopy, so I would have something to eat as soon as I was awake. However, that had slipped my mind. So now, my purse smells like a banana, and it's not a nice smelling banana. In the big scheme of things, this isn't so terrible, but it's one more bad smell I can do without.

It is important to get copies of all your medical records as you see the various specialists and have tests and scans done. I have just started and already I have an impressive stack of papers, none of which smell like a banana, because I've been putting them in a manila folder instead of in my purse. Reading the results is a little disheartening. First, because I have no idea what the terms mean, and they sound ominous. "There is no biliary duct dilatation."  Is that good or bad? "There is stranding immediately adjacent to perirectal fat." Do I want stranding there? "This lesion is highly suspicious for malignancy." This one I understand. Second, because of the adjectives used. For example, on the colonoscopy summary, the doctor wrote that my "colon is otherwise unremarkable." I like to think that it is a very remarkable colon. What differentiates a remarkable colon from one like mine? I especially like this type of wording: "The mass abuts the levator sling with no separating fat plane," because it sounds like something from National Geographic Magazine. And the CT scan of my pelvis and abdomen said "There is a mass in the low pelvis which appear to be emanating from the inferior rectum." So now I not only have an unremarkable colon, but an inferior rectum. But I did take heart when I saw the report of the CT scan of my chest - apparently, cancer in the pelvic/rectal area metastasizes to the lungs, so they do a CT scan there as well.  It says that I'm a "63 year old woman with superior vaginal and rectal mass." So not everything about me is inferior and unremarkable!   

  

Where to begin...at the end, where it all started

I am having a bad day. I've had several bad days since June 4, 2103, when I went to see my doctor about a problem I thought would be routine with a quick fix. In May, I had noticed a vaginal discharge. Okay, let me just say here, that I'm going to be talking about some things that my body has been doing that aren't pleasant, so if that bothers you, get out while you can. So, I had been having a vaginal discharge, that I thought was a yeast infection, and I'd treated it with over the counter meds, but the discharge was still there. Then I noticed the color had changed to a light brown, so I thought it might be blood and decided to see my doctor. She did an exam and sent me to a GYN. The GYN also saw the blood and a small mass in my vagina, and she did a DRE, digital rectal exam, where digit = finger, rectal = ass, and exam = test. She felt a mass in my rectum, which I now call the "mass in my ass," which was not Pretty Boy Rhoid, my hemorrhoid. She also had a technician in her office do an ultrasound of my vagina, which involved taking a long, fat wand, lubing it up with gel, and inserting it in my vagina. She then twirled it around until I said "uncle" which didn't make her stop, but it did bring forth an apology when I groaned. I told her it was not her fault. She finally stopped when she had finished the test. The GYN also did a Pap test and sent me to a colorectal surgeon.  

Before I saw the colorectal surgeon on June 18, I went to get a CT scan done of my pelvic area. I had to drink a foul tasting liquid first, and then I was taken to a room where I got an IV. At this point, I will tell you that I HATE needles and blood and I was scared, so getting the IV did not help my mood.  I had to have the IV, so they could shoot some dye in me for contrast. The colorectal doctor did a DRE (if you don't remember what that means, look up) and she also asked me to kneel down on a small bench attached to and under a table. Then they pushed some buttons and my head went down and my ass went up, and they draped a piece of paper with a hole in it over my ass, so that all they could see was the eye of my ass looking back at them. I don't recall what all was done at that point, but I remember something being inserted into the eye of my ass, so that she could see what was in there with Pretty Boy Rhoid. It was a large mass (5.6 cm x 4.6 cm) of something that had silently shown up unannounced and unwelcome and was making itself at home and growing in the process. God only knows what it was living on in there!

When I left the colorectal doctor's office, I had a prescription to get the ingredients for a colonoscopy scheduled the next day, June 19. These ingredients, which tasted terrible and made me unable to leave the bathroom for any length of time, were also expensive. A small bottle of this shit which makes you shit costs $81, and it tastes like shit!  I don't mind paying that kind of money for champagne, but this is a foul tasting, salty liquid that they try to dress up with sweet flavors and the result is disastrous. I had had a "clean" colonoscopy three years ago, but here I was having another, and still not loving it. If you have not had a colonoscopy, you are not missing anything.  But they are important for finding tumors in the colon, so you'd better have one when it's time. The prep is worse than the colonoscopy, because you are very awake and aware of your rear end during the prep, but you are asleep and unaware of anything when they do the test. You are also aware of how terrible it tastes going down, but here's a tip. The stuff I had was already flavored and it was some gross berry flavor. The doctor's office told me to get some limes and put them in the drink and bite a lemon before I took a swig, because it deadens the taste buds. I had seen people bite into lemons before, and it made my mouth pucker. I never thought I could bite into one, but I was biting lemons like a trooper. The other trick was to use a straw. So I got all the stuff down, except for a small amount at the end of the second serving, because I started to gag. I decided to leave well enough alone and keep what I had down, down. So I threw the little bit that was left down the drain. I don't recall the drain suddenly being freed up at that point, but it wouldn't have surprised me. I then spent the next few hours on the toilet where my boy dog, Finn, sat with me, because he was in the perfect spot to be petted.  He would like me to have a colonoscopy every day. I can't help him. 

My colonoscopy was not scheduled until 11:00, and I couldn't eat anything after midnight.  I was able to let it all hang down, though. So, I was hungry when I arrived at the hospital. And I listened to the nurses talk about food that they liked and what they were having for lunch. And I filled out more forms very similar to all the other forms I'd been filling out at every doctors' office and hospital that I'd been to in the last two weeks. It was good practice and I remembered who I was and what medications I was on and what dosage I took and where I worked and on and on. I also got another IV and two "sticks" in my right arm. The left arm had already been deemed no good for sticking by a previous nurse on another occasion. When this nurse tried to put it in my right arm near my wrist, it didn't work and it hurt like hell, so she moved up to the crook in my arm on the other side of my elbow. Oh, how we laughed! I was able to relax when she got it in and they started pumping something in me to sustain me. I think it was saline. They may have given me something to make me happier, but I don't recall. They wheeled me back to the chamber of horrors where the colonoscopy was to take place. There were two nurses and two doctors waiting for me. Because I was having a colonoscopy and an internal ultrasound, I had to be sedated - I had written that "I had to be put to sleep" but that reminds me of what happens to pets that are in a bad way. One of the doctors was an anesthesiologist and the other was the colorectal surgeon. I first said to the group, "I'd like to thank you all for being here today." That was followed by an announcement that if I saw my ass on Facebook that evening, I was coming back to get them all.  The anesthesiologist said there were already plenty of asses on Facebook. One nurse and the colorectal doctor were lubing up another magic wand - this thing was about two feet long and fat and looked rigid, and I wondered where the hell it was going. I decided to tell everyone about my hemorrhoid, which I affectionately call Pretty Boy Rhoid. I would not have named my hemorrhoid, but my good buddy and neighbor thinks that we should name them, so I did it for her, and because I love naming things. Her husband's is named "Jimmy the Hemmie" and although my buddy does not have a hemorrhoid, she is ready with a name when one comes along. Her hemorrhoid will be "Grapes of Wrath."