Strange brew, killing what's inside of you (Cream)

The title of this post refers to chemo drugs, in particular, Mitomycin, one of the chemo drugs that I had to take during radiation. I hope I never have to take it again, because it knocked me out. Not only does it kill what's inside of you, namely, the tumor, but it does a number on the rest of your insides, too. I got this drug as an outpatient at the infusion center, and it only takes fifteen minutes for the infusion. The TIP drugs, which I had to have inpatient, were infused over several hours, but they weren't nearly as bad as the Mitomycin. It's also a vesicant, which means it's a chemical that causes extensive tissue damage and blistering if it escapes from the vein. There's a warm and fuzzy for you!

I got the Mitomycin on 11/11 along with the King Kong fanny pack of 5FU, which I had to wear for five days. The 5FU fanny pack was not as bad this time, and the time seemed to go faster. But each day after the Mitomycin, I was getting weaker and weaker. I would get up, take a few steps, then have to rest, before continuing. I wasn't out of breath, just weak and very tired. I was sleeping about 18 - 20 hours a day. My dogs were very patient as I tried to prepare their meals, because I'd have to sit down between each step of preparing their meals, so it took me much longer to get them their food. I missed six days of work because of the extreme fatigue. On 11/22, I had to get a transfusion because my blood counts were so low. 

I hit my nadir (low point) on 11/24 which was a Sunday and a "make-up" day for one of the radiations I had missed. My nieces were coming over to take me to the radiation, because I hadn't been feeling well enough to drive. This day, I felt the worst. It started with me vomiting in bed, but in the handy dandy vomit bag, the one you can measure your vomit in! I hadn't been eating a lot, so it was mostly grape juice and orange juice. When I was able to get out of bed, I took a shower, sitting on the shower stool. I think that was just too much exertion for me, because when I got out, I had a case of dueling fluids trying to escape from my body. I was trying to put on the ostomy pouch when I had to vomit again. I managed to vomit in the toilet (sorry, I wasn't able to measure this time) and was still trying to get the pouch in place, when I was overcome by explosive diarrhea, before I could fasten the bottom of the pouch. So, there I stood, with liquid crap all over the floor, the toilet, the rugs, my recently washed feet, and my dog, Finn, who insists on being near me in the bathroom whatever the occasion. When I'm not in the shower, Finn lies in the shower, which is his safe place. Too bad he didn't get in it behind the curtain before the diarrhea hit. Since I was there alone, except for Finn, I had to muster some strength and clean up the mess. If I had felt better, I would have laughed at the absurdity of it all. 

My nieces arrived and I told them that I had taken my temperature which was 102, and I'd called the oncall doctor who said for me to go to the ER. So I then called my advocates, my brother and his wife, to take me there. They helped me up to the car after packing a few items, and we drove to the hospital. Luckily, it wasn't busy, so I got in quickly, although I was in the ER for about seven hours waiting for test results and a room in the cancer wing. The staff in the ER was very nice, and I was covered in warm blankets until I finally got so hot that I had them all removed. I think my fever had broken. 

When I was admitted to the hospital and the blood work came back, they decided to give me two more transfusions. I asked them to not talk about the blood and to make sure the pole and bags were not in my peripheral vision. I made sure that I didn't look at the line going into my port, too. 

I was released on Tuesday, my shorted hospital stay so far! I have had more energy since the transfusions and my blood counts are going where they need to be. Thanks to the folks who donate blood, so people like me can walk without having to rest every three minutes!

And finally, yesterday was my last radiation treatment! If the scans which won't be for another month or two, after the radiation stops working, show that the cancer is gone, I won't need any more radiation or chemo. The radiation therapists gave me a diploma congratulating me for going through the treatments. Dr. BigHands, his nurse, and all the therapists signed it. They all told me that I had to ring the bell when I went back out through the waiting room. So, I went over and pulled the cord and rang the bell three times. The receptionists started applauding and the other patients followed suit. One guy told me his last treatment is Friday and that he was going to pray for me. If you're going to be in a club that you never wanted to be in, it's good to be in one where you get a lot of support, not just from your family and friends, but from strangers who just want a cure. I hope they all get their wish. I know something about what they are going through, and they all deserve applause and a happy ending. 

(Not) Being There, not by Jersy Kozinski

Three long time friends stopped by on Friday for a visit. One was visiting from Australia and the others live in town. They brought me the softest pair of PJs that I've ever worn, and some matching booties.

We caught up for awhile and then we talked about the cancer. One friend said she couldn't imagine what I was going through. I told them what I've felt all along: that this is not happening to me. This brought up a discussion about how that could be an automatic response and part of my attempt at self-preservation. I hadn't thought of it that way, but it makes sense. I haven't consciously distanced myself from what I'm going through, and I'm aware when I go through each part, but it doesn't feel as if it's happening to me. It still sounds strange to say "I have cancer." One of my friends likened it to going through a traumatic event like a rape and having an out of body experience and watching yourself go through it, but not feeling as if it were happening to you, which is a survival mechanism. It's easier for me to have a good attitude when I don't feel as if it's happening to me. And I definitely don't feel like a victim.  

I don't know if other cancer patients feel the same way, but I think it's what is helping me get through it. It's surreal on some levels. I can't get my head around it. I have always felt that I would never get cancer, because it wasn't in my family, at least that I knew of. I recently contacted a second cousin on Facebook and asked her about my biological father's side of the family - I was not raised by this father. I had heard rumors that my paternal grandmother died of either lung or colon cancer. The second cousin talked to another cousin in California who gave her this information: my grandmother died of colon cancer, as did two of her sisters. Another sister died of breast cancer and a brother died of lung cancer. I'm lucky I only got one kind of cancer with these genes! And actually, I didn't get any of those cancers, so maybe it was just a fluke. 

I am in week 5 of radiation and have started the second chemo round. Sometime after the treatments end, I will get another scan done to verify that the tumor has disappeared, never to return again. Then in February, my colorectal surgeon will start looking at the possibility of reversing the colostomy which would make me very happy. And if it can't happen then, I'm not giving up hope that it can't happen someday. This shit is taking up too much of my time!

The cancer card

I admit to shamelessly using the "cancer card." In my opinion, it's okay to use the cancer card as long as you have cancer, but it's bad karma to use it otherwise. Here are examples of when I've used it:

1. Door to door roofing salesmen beckoned me outside and asked, "When was the last time you had the roof replaced?" My response was, "I don't care, I have cancer."  His response was to raise both hands in surrender, back up, and say, "Fair enough."

2. Telemarketers call (daily) and give me their spiels about needing money from me, and I tell them that I have cancer and am not donating now. Many wish me well before hanging up.

3. My bank called and left me a message to call back. This annoys me, because I don't know if someone has hacked into my account, and they want to warn me, or if it's a sales pitch. It was a sales pitch, and I asked them to only call me if something bad has happened, because I have cancer and don't want to be bothered with sales. The wrote a big note on my chart to leave me alone and only call for problems. 

4. My neighbors wanted to take me to see Steve Winwood concert, but I wasn't sure I could sit through the pre-Steve show, so I called the box office after trying in vain to find out who the pre-Steve show was. I left a message that I had cancer and wasn't sure I wanted to watch both shows and asked who the first show was. The box office called me back and told me who was playing first. We decided to skip the first act. 

I also use it on myself. For example, when I want to go to bed at 8:00 PM, I tell myself it's okay, because I have cancer. And when I wake up 11.5 hours later, that's okay, too. I take more naps, because I have cancer. I don't work a full 8 hour day because I'm tired from the cancer. It's my invisible handicapped sticker, and I have it with me at all times. I'm not abusing it, because I am working, walking the dogs when I can, driving myself to treatments, and trying to live a somewhat normal life, but with a lot more sleep, which is something I was lacking before all this happened. I will appreciate it while it's here.  

King Kong fanny pack, Willy and the hand jive, and catch my anal drift

Today, I got reacquainted with the King Kong fanny pack. Things got off to a rough start when the fanny pack nurse realized that I did not bring the bag or pump with me. I didn't know I was supposed to bring either, but then I remembered that the nurse, who unhooked me at home the last time, didn't leave them with me. I even sent my brother home to check. The nurse had given the only pump she had to a new customer, because the company she works for didn't send one for him/her. So the nurse had to get one delivered to me at the cancer center, while I waited. It came via a courier, and then she brought a spare fanny pack she had in her car just in time for me to take the elevator downstairs to the radiation treatment area. So I would have had to wait anyway from the time the pack was hooked up until my 3:45 radiation. 

I got the 15 minute mitomycin infusion after my blood results came back, and I'm now wearing the King Kong fanny pack with a strap that ends right under my right boob. The last fanny pack I had had a much longer strap that allowed me to wear it across my body and hang to my waist. With a colostomy at my waist, I don't need to wear a heavy fanny pack AROUND my waist. I'm not thrilled with the short strap on this one, but I called about it and they are going to try to send a nurse here during the day or have one meet me at the cancer center before my radiation tomorrow. 

Just so you know, I do have fun with the receptionists, nurses, radiation therapists, and doctors during my treatments. The radiation therapists whom I meet with 5 days a week for about 15 minutes are a fun group of gals. We've had some impromptu dancing, singing, story telling, and lots of laughs packed in a short time. They give me a rubber doughnut ring to hold on to, which, of course, you already know about, because you've read the other blog talking about that. The other day, I had to remind them to get me the ring, but I couldn't remember what it was called, so I said, "Don't forget the hand job, so to speak." This prompted comments from the therapists. "I guess we won't watch you on the viewer this time like we normally do" and "You're going to need a cigarette when you come out of here." 

And Dr. BigHands just had a birthday on Saturday, which I learned about the Thursday before. On the way home on Thursday, I stopped at one of my favorite gift shops, specializing in the bizarre, gag gift types of presents. I got him a card and two gifts and left them for him on Friday, when I went for my treatment. I saw him today when I went for radiation therapy, and he thanked me and informed me that he get sick on his birthday, but it was still a good birthday. On Friday, one nurse had told me that he had four gift bags, two cakes and a pie waiting on his desk for him. The card I got for him had two roosters on it, and under them, it said, "Mine is bigger than yours." I explained inside the card that I meant my age was bigger than his. I gave him some salad tongs, which had hands at the end of the tongs - the tossing part, not the handle part. I was going to suggest he use those for exams instead of his BigHands, but I think the splinters might be worse than his MainsGrandes. I also found a small bottle of hand sanitizer that had "Anal Traveler" on the label on the front of the bottle. This can have several meanings, if you catch my drift, and if you're standing down wind from me, at a time when my pouch has sprung a leak, you would. 

I got the fire down below...

I am in week three of radiation therapy, and I'm really tired. I have three more weeks to go and should be finished with the treatment, but possibly not the side effects, by the day before Thanksgiving. Dr. BigHands, aka Dr. Funkinated, says I'm tired from the mitomycin chemo I received three weeks ago. I wonder if my chemo doctor would say it's from the radiation. Regardless of what it's from, I'm so tired that it's hard staying upright at times. I take a nap every day and get at least 8 hours of sleep, but nothing helps me feel rested and energized. So, I'll just wait it out. The bad news is I have another round of chemo starting 11/11, which probably won't help. I'm hoping it doesn't destroy the tiny hair growth that's been happening on my bald head. 

Radiation exacerbates whatever issues you already have in the part of the body that gets radiated. Since my pelvic area is being blasted, I am now dealing with Pretty Boy Rhoid (again!), diarrhea, herpes, and vaginal itching that rivals any yeast infection I've ever had. Luckily, I have so many issues, that it's hard to concentrate on any single form of misery. It's kind of overwhelming. I take medication for some of the problems, but as soon as the problem appears to be cured, it crops up again. Dr. Funkinated told me to try Benadryl cream or Aquaphor for the vaginal itching, but the Benadryl burned and the Aquaphor only stained my underwear. Neither helped the itch. I resisted the urge to try a brillo pad. Today, he suggested hydrocortisone, which seems to be doing better than the other two. 

Radiation itself is very easy to endure. Each day, I go to the cancer center, sign in, and wait for the radiation therapist to come get me. She walks me back to a big, cold room. There's a stretcher in the corner that looks like something they take skiers off the mountain on after they've had an accident. I want to stay off of that thing and since I don't ski, I think I'm safe. Once inside the room, I lie on my back on a hard, narrow table that has an apparatus with grooves for my legs to rest in, in order to stabilize them, so I can lie still. The two therapists then stand on either side of me and line me up so that the marks on my pelvic area are aligned perfectly with some grid they can see. One of them places a warm blanket on my chest and arms and hands me a rubber "doughnut" to hold on to, to stabilize my arms and hands. Every day, I forget to pull my pants down, and they have to remind me. Every day, I comment on how I keep forgetting to pull my pants down. I'm not the girl I used to be. 

The therapists then leave the room and a big metal door shuts after them. They go to a safe place where they can watch without being zapped by the rays from the machine. Somehow, this is not comforting. I close my eyes and listen to the sounds of the machines and the oldies channel on the sound system. First they take an image or images of me which they compare to a prior image. To compensate for any differences in the two, there's a quick jerk of the table I'm lying on; this perfects the alignment based on the xray comparisons. After that, the radiation begins, signaled by a beep. I keep my eyes closed and don't think about what is happening; although yesterday, I told the machine to kill the cancer but leave my good parts alone and undamaged, assuming I still have some good parts.

After a few minutes, there's a beep, which signals the treatment is over. Then the therapists come back in and help me up. I'm pretty good about remembering to pull my pants back up, although they don't seem as concerned about that as I am. Then, I leave. One day a week, I see Dr. BigHands (unless I have issues that need to be addressed before the designated appointment day). At each visit, he asks if I have any questions or issues, and at some point, I have to drop my pants, and he examines the front and rear to see how my skin is holding up from the radiation - I have to bend over for the rear exam. I find myself wondering if little old ladies in their 80's are asked to do the same. Anyone who is modest or shy should never get cancer in the pelvic area unless they are prepared to make some personality changes.

And now, a few words about Dr. BigHands' nurse. I think it bodes well that Dr. BigHands' nurse is a kind and compassionate person who thinks and speaks highly of him. He and I enjoy great bantering at each visit, and we are competitive in our one upmanship, but we do agree on his nurse. I liked her immediately, and I met her before I met him. She's not afraid to be honest and kind and is free with her hugs and compliments. She is also a cancer survivor. I plan to join her club. 

Fanny pack, my ass!

At 11:30 AM today, my brother picked me up, so I could be on time for my noon appointment for my first round of mitomycin and 5FU - I think the 5 stands for the time I was finally able to leave the building and the FU is self explanatory. I waited in the waiting room until 2:00 PM, because they were running behind. It was more like crawling behind. So, I finally got back to the infusion room and they took my vitals which were high, in the case of my blood pressure. Then they moved me to a reclining chair in pod 2, I believe. Pod 2 had room for 4 cancer patients getting infused, or in my case, waiting to get infused. First the nurse accessed my port, which for some reason hurt worse than any other time. Then they ran some saline in me, checked the blood return from the port (which I did not want to hear about or witness), drew some blood to check my blood count levels, and finally got the machine to stop beeping. After a little while, our whole pod was full of happy cancer patients. I was actually one of the younger people in my pod, but the other three were men who, except for one, had more hair than I do. None were having as much fun as I, though. 

So, they sent my blood off to the lab to get the results, then the computer system went down, and from then on, things had to be done manually. You can imagine how that might slow things down on a Monday that was already overbooked and running 3 hours behind. My brother and I were already getting tired from doing nothing. I had to quit using my computer when the system went down, so I just sat and waited. I tried to lie back in the recliner, but the angle of the probably expensive chairs was such that my neck had no support, so I abandoned the reclining idea. One of the many nurses who was running around was wearing heels - she was supposed to be working at a desk today - came around and did a tap dance and sang for us. I joined in on the chorus. We all clapped for her at the end. Another nurse wearing a top covered in a design of candy corn brought me some candy corn, which I love. She also showed us a doll that looked like an old witch that sang a song and moved when you touched her hand in the right spot. I used to do that when I was younger if the right guy came along.  

Another nurse came and gave me a huge bag filled with things for the 5FU pump: a spill kit, which NO ONE has ever had to use, and something to put everything in on Friday when they pick up the fanny pack and de-access the port. She had me sign papers about the pump. I have no idea what they said, and she said some papers were missing, too. It doesn't matter what it says. I'm going to do the treatments, so why depress myself by reading that one side effect is that I may grown another asshole, and it, too, will have cancer. My brother and I were trying to adjust the strap of the fanny pack which contains the 5FU, and he announced that it was easier to make it smaller than it was to make it bigger. So I, of course, said, "Said the chorus girl to the Bishop." The nurse was glancing at us, and I told her we were brother and sister, so this type of bantering was in good fun, and not marital jabbing. 

Finally, the mitomycin had been sent up from the pharmacy, and after giving me the pre-drugs to combat any side effects, they gave me 15 minutes of mitomycin chemotherapy. After that was over, I was hooked up to the fanny pack and told I could leave. So the actual treatment lasted about 25 minutes, but we were there for 5FU hours.

Which brings me to the real reason for this topic tonight. They kept telling me, "It's like a little fanny pack that you wear for 96 hours (4 days 24/7)." This fanny pack would fit King Kong's fanny. It's enormbutt. At the moment, it is filled with chemo drugs that must last until Friday at 5:00 PM, so it's rather heavy, too. There is no comfortable way to wear this monstrosity. At least it's black, so it goes with everything and looks smaller than it really is and it's so big that it makes my butt look smaller. At the moment, I am wearing it like a crossover purse. When I went on the doggy walk, I wore it like a fanny pack, but it threatened to strangle whatever might be emerging from the colostomy bag and was pulling my jeans down, too, so I've switched to the purse carrying method. The people (doctors, nurses, etc.) who told me about the "fanny pack" were so nonchalant when they talked about it, that I should have known they were hiding something. No one ever actually showed me one or even a picture of one, because they would have needed King Kong to model it. I asked the nurse today if the pump was loud. I think her response was an "I don't think it's loud." Well, most of the time, it's not loud, but every few minutes, it makes a whirring sound that should really help me sleep the next three nights. I have to lay it on the night stand while I sleep, and it has a long cord that goes from my port to the fanny pack. Of course, I have fears of pulling the cord out of the port, which hurt like hell going in, so I can only imagine the delight in dislodging it. And when I mentioned to the nurse how difficult showering would be, she said, "I just tell people to take baths." Great! How convenient. I'll be freezing from the waist up with my colostomy under water, my port above water, and my cold bald head above it all. 

At least there are just 4 more days of baths and stress free sleep. Did I tell you that one of the self-care tips is "Get plenty of rest"? Another is "Avoid contact sports or activities that could cause injury." The person who would be injured is whoever makes contact with King Kong's fanny pack. Oh, and radiation starts tomorrow at 10:00 AM or 1:00 PM, depending on if they are overbooked, backed up, and the computers are down. Drop by anytime and say hi, if you're in the neighborhood. I'll be there. 

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.

Oh, the Blues ain't nothin' but a good woman feelin' bad - J. Mayo Williams

Something cool happened to me today, which really picked me up. If you aren't aware, I am a huge fan of The Blues. One of my friends in California is also the person who persuaded me to write a cancer blog. He wrote one when he went on his cancer ride last year. His cancer is in remission. Yay for M! He is also friends with a wonderful Blues writer, singer, and harmonica player and his lovely wife, Charlie and Henri Musselwhite. (I heard Charlie perform when I lived on Maui back in the early 90s. He played at an upcountry bar/restaurant named Casanova's.) During one of M's and the Musselwhite's get togethers, M. told Charlie and Henri about my grace and humor under fire. Charlie and Henri responded by giving a gift to M. to send to me. It was one of Charlie's CDs with a lovely hand written message on the CD's cover: "Kind wishes to Nancy. Get well fast. Music is healing and even John Lee Hooker said "blues is a healer." - Charlie and Henri with Love."

The CD they sent me (Henri is Charlie's producer), Juke Joint Chapel, is a great Blues CD! It's got so many upbeat Blues Songs, and I need that right now. (If only it could cure indigestion, too!) I turned it up loud, and it sounded great as all good music does. I can't wait to play it in my car, and I know the people driving near me will be happy to hear it, too.

They also sent me the Dalai Lama Cancer healing chant with this note: The Dalai Lama has requested this CD to be copied and distributed freely. I will listen to this when I'm not so wired! 

I've put together a list of Blues songs that includes some of my all-time favorites, as well as others whose titles paint a chronological story of my illness, as I see it doing down (or coming up.)

It Ain't Right
Messin' With the Kid
My Starter Won't Start This Mornin'
I'm Tore Down
Stop Breakin' Down
How Long, How Long Blues?
Blues, Why Do You Worry Me?
Back Door Man - reference to the origin of my cancer - ;-)
Hellhound On My Trail
Help Me
Got To Be Some Changes Made
Boom Boom
Give Me Back My Wig
That Ain't No Way to Treat a Lady
I'm Ready
Don't Look Back
We're Gonna Make It
River Hip Mama
Everything Gonna Be Alright
Wang Dang Doodle - http://www.youtube.com/watch?v=EBsrx40fiX0 - I love this early version by Koko Taylor

Thanks to M. for suggesting that I write a blog which continues to help me through this unplanned and uncharted journey. It's also going to be a good way for me to remember what happened, when I'm a mean, much older crone with a worse memory than I have now. And thanks to the Musselwhites, who did a kindness for someone they don't know. And many, more thanks to my family, friends, and Mother Nature, all of which have given me a greater appreciation for what is really important in this life, which is, of course, family, friends, and Mother Nature. Each one has helped me ride out the storm and see the light on the other side - not THAT other side!  

Bad tasting food for thought

For two weeks, I have not eaten raw fruits or vegetables. My staple food is fruit. I love it. I normally eat from 5 - 8 servings of fruit a day. But I was told by someone in the hospital that I should not eat raw fruits or vegetables, because of the potential for infection from handling by others. Given the appearance of the typical customer at the grocery where I shop, this seemed like good advice. A few days ago, I called my chemo doctor's office and talked to his nurse about my constant indigestion, and whether I would need more blood work before my next appointment. She said "yes" to more blood work, and I said "I want someone to access my port and not stick me in the arm." She agreed to do that. We were also going over my most recent lab work. She suggested I eat grapes to boost one of the low numbers. I told her I couldn't eat raw fruits or vegetables. She laughed and said, "Who told you that?" I told her someone in the hospital - I think it was one or more of the nurses. She told me that was totally wrong, and that I could eat both. So, that's what I've been doing, and it's been great, except for the way some things taste now.

That night, I went to the grocery for the first time with my newly shaved head under a ball cap and bought fruit and vegetables and foolish things, like a can of organic tomato basic soup by Wolfgang Puck for $2.75. I'll let you know if it was worth it. My protein and iron were low, so I bought a Polish sausage, which I love to eat with spicy mustard. I don't understand what could be giving me constant indigestion!

My taste buds have become fickle, and I never know when something is going to go from bad to good or vice versa. Organic lemonade was great for awhile, so I bought several containers. Then all things sweet went to taste bud hell, and lemonade - and many other things - no longer tastes good. I bought orange juice to help improve another low blood test score, and it tasted terrible. It's one of the foods that has a metallic taste. I had bought the largest container in the store, too. Sometimes, I pour a small glass and drink it quickly, just to get some in me. I love sweets, but now, I can only take a very small bite and put it aside. Tomatoes are on the A-Okay list. I slice one and put some shredded mozzarella cheese, olive oil, and fresh basil on it, then heat it in the microwave. It's so good! My brother and sister-in-law have several fantastic gardens with flowers, herbs, and vegetables, and they gave me a bunch of home grown tomatoes and some basil to take home after my hair was buzzed off this past week. Last weekend, I went to their place - yes, I can drive - and we sat outside under a shade tree and talked and felt the breeze and watched the butterflies, birds, and bees flit about. It was so peaceful and comforting. 

Steak also tastes good and my housemate cooked them on the grill earlier this week. With the steaks, we ate some of the side dishes that my friend has been cooking for me every week. My housemate said if she ever opens a restaurant, he wants to know about it. Her food is amazing and she delivers it to me. Some of my family and friends have been sending her money to go towards my meals, and that has been great. Not just because I don't have to cook, but because if I did cook, I wouldn't eat my own cooking, unless it was microwaved tomatoes, mozzarella, olive oil, and basil. 

For those of you who know me and are curious about my "housemate," he was a good friend and mentee of my brother who committed suicide earlier this year. He is in his late 20s, lives downstairs, and uses my kitchen when he wants. We have had a very comfortable living arrangement for about 8 years, and he helps with chores around the house. For the last few months, he has been walking the dogs every night with my neighbors (or me, when I'm feeling energetic) and going to the store when I need something. It's nice having him here, especially now, when I'm not quite up to par. 

At my doctor's appointment yesterday, he said that I had tolerated the aggressive chemo well and didn't think I'd have a problem with the next round in less than 2 weeks. I think I've done well, too, although it hasn't been without some bad/bald spots. But once I got over the headache, nausea, and vomiting while I was in the hospital (and my brother's car) and graduated to constant indigestion, hair loss, fatigue, and bad tasting food, it was a piece of cake. But I couldn't eat it, because it was too sweet. 

Mama's got a squeezebox she holds under her chin

I'm probably past the point of remembering much about the first three chemo infusions I had as an inpatient procedure two weeks ago. But I'll see what I can dredge up. On August 13, a bed was available in the chemo wing of the hospital, courtesy of a nurse friend of mine who had obtained a room for me. My brother and his wife took me there with all the comforts of home: iPhone, laptop, speakers for iPhone, chargers for phone and laptop, books, and my robe for walking and not exposing my ever shrinking ass. I didn't take my PJs, because if I'm going to vomit or poop on anyone's PJs, I don't want it to be mine. What I wanted most to take were my dogs and cat, but that didn't seem like a good idea to anyone but me.

So, I met my very nice nurse for the next 12 hours, and he filled me in on what was going to happen and introduced me to my CA for the next 12 hours. I must say that all the nurses and CAs in this wing of the hospital were very nice and knowledgeable. Even the woman from housekeeping was upbeat and we talked about Blues artists whenever she was there. The nurses and CAs still came in regularly to check my vitals, but that's part of the drill. 

I had barely gotten into my hospital gown (opens in the rear) and in the bed when the nurse announced that I had a visitor. I was incredulous. It was the former CEO of the hospital who was on a Board with a mutual friend. She had told him I was there and he came to visit. He was very nice and funny and informative and stayed for a long time. He started my stay out on a positive note. It didn't hurt that the nurses noticed who my first visitor was!

My first night's infusion did not begin until 8:00 PM. That would not have been a problem, except that there were three infusions the first night, and they began with some preventative drugs to keep side effects in check, then the first drug was administered in a drip over a three hour period. After the first drug was in, they started the second drug with a preventative drug, and it lasted for two hours. Then, there was a third drug, preceded by a preventative drug and the third drug is administered over a two hour period, too. They wanted me to stay awake, so I could alert them to any side effects, so I was up until 1:00 AM when all the drugs were in me, plus an additional hour from being jacked up over the events of the day. And of course, the CA and nurse and doctors came in at their regular scheduled times, which apparently is anytime the patient is asleep. 

One of the procedures that was followed for each infusion was comforting, but also made me think about how serious this was. Two nurses had to be present when the drugs were first started in the IV. My wristband was checked for the correct name and birthday, and one nurse held the orders while the other nurse described what was happening as far as what the drug was, and how much of it was being administered, and over what time period, as well as how much per hour was being given. The nurse who hooks up the chemo bags to the IV also had to put on a special gown and gloves in case any of the drugs were to spill. I can't remember if both nurses had to wear the protective coverings or only one, so don't quote me on this part.

When the doctors and students and interns made their early morning rounds the second day, I told them that I hadn't had any issues and felt pretty good. The Fellow warned me that things could change quickly. I said, "I don't care, I'm going to believe that days two and three will be as good as the first day was." He told me to keep that attitude. 

The second and third nights' infusions involved only one of the three drugs and they lasted for two hours each, but had to start at 8:00 PM when the first night's infusion started. These went without a hitch, too. 

I got through all three days of infusions without any issues, but when I woke up Friday morning, the day I was supposed to go home, I had a terrible headache with nausea and vomiting. Yep, it was a smart move to not wear my PJs after all. So, I wasn't allowed to go home, but honestly, I felt so terrible that I wanted to stay in the hospital. They kept pumping me with fluids and potassium and magnesium which were both low. I couldn't stand the thought of eating anything, especially anything the kitchen was offering me, and they weren't going to let me go home until I could keep something down. They gave me anti-nausea drugs and pain meds. Friday was spent in bed and in misery. Saturday, I felt a little better. The headache was gone, but the nausea was still around. I found that they have a new vomit bag (new to me) which is like a squeezebox with one end closed.  You vomit in the open end (be sure to hold the correct end next to your mouth!) and the vomit expands the bag AND measures how much you vomited. If you are not aware, they measure EVERYTHING in the hospital: pee, poop, vomit, fluids in, drugs in etc. (I took several vomit bags home with me and now have them in each room for quick access. It makes a great conversation piece, too!) In the early afternoon, I ordered the only thing that I thought I could keep down: two hard boiled eggs. I ate one and left the other. A few hours later, one of the doctors arrived to say I could leave, since I'd kept the egg down. I called my brother and he came to pick me up a little while later. Luckily, I held a vomit bag on the ride home and managed to produce some bile in it. Neither my brother nor I measured how much. And, the egg stayed down!  

Yes, sir, yes, sir, three bags full

Many of you may already know that I've been home from the colostomy surgery for a week now. What a wonderful event that was!  I mean coming home, not the surgery. I did not take any notes while I was in the hospital to use for the blog, so most of what happened is not even a memory now, because my memory is better suited for events that happened decades ago. Most of the time, I'd be hard pressed to tell you what I did five minutes ago. Part of that may be because I live a fairly routine life, and I'm not doing much in the way of exciting things. Like my dogs, my life is mostly spent waking up, eating, napping, walking, eating, napping, eating and sleeping. Occasionally, I will read a book and fall asleep on the couch. And lately my life seems to revolve around poop, both mine and the dogs'.

The surgery went well. Right before the surgery, I was interviewed by all the doctors who were going to be involved in the surgery: surgeons, anesthesiologist, best boys, key grip, and so on. First, I saw my surgeon who inspires great confidence. She also has the ability to make wearing scrubs look like a fashion statement. Next, I talked to some anesthesiology med students or interns, or maybe they were actually doctors, I'm not sure. They were dressed for the part and they explained things to me, so I felt safe in their hands. They seemed to know what they were talking about, but they were in their late 20s. I think it's good that I was already on happy meds when they told me their ages. Their teacher showed up at some point, and they introduced me to him, then later, they told me there was a change of plans and another teacher was going to be there instead. I could tell that they were happy about this change of plans, so I was, too. I think the new anesthesiologist teacher doc was German, but I'm not sure. Apparently, I told him that I had been to Woodstock. I am not sure how I segued to that topic, but I'm sure it was smooth. Another surgeon came and talked to me, but I don't recall what about. I think he wanted to see the two blue "tattoos" on my belly where they would put either a colostomy or an ileostomy. I don't remember much after that, although I think I was still awake when they took me into surgery. They ended up doing a colostomy, because of the possibility of becoming dehydrated more easily while going through chemo. 

More memory blur after the surgery, as I don't recall going to recovery or getting to my room. The section of the hospital I was in is in the revenue producing part and mostly has patients who have had colostomies. My new ostomy bag was monitored to see if poop was there, and I was on a liquid diet. I don't know how someone can ruin bouillon, but they managed. One time I had it, and it tasted like pure salt, and the next day, it tasted like dish water, or how I imagine dish water would taste. After a few days, I moved up to a soft diet which meant I could have jello, which I hate, and cream of wheat, which I hate, and more bouillon, which I would have liked if they could have made it right. I drank a lot of cranberry juice and water. I wasn't getting a lot of food in me, so I wasn't surprised that there was no poop in my bag. Meanwhile, I started walking around the nurses' station dragging my pole of IV fluids beside me, trying to encourage my digestive system to produce poop from liquids. As I walked the floor, I noticed the large photographs on the walls in the main corridor, as well as the ones I could see in other patients' rooms. They were mostly nature scenes in Louisville and were really quite nice. I had some concern that the one over my bed which was titled "Grinstead Drive" was actually the entrance to Cave Hill Cemetery. If I had a plot reserved there, I would have felt this was a bad omen. 

If you have ever stayed in a hospital, you know that it is no place to recover from illness or surgery. For one thing, the beds are uncomfortable, for another, the food is bad, and finally, there's a constant stream of nurses, doctors, and clinical assistants coming in at all hours of the day and night to check on you. CAs would take my vitals around 1:00 AM, then some poor med student would come in around 4:00 AM to ask how I was. I usually said "sleepy" or "tired." They always wanted to check my bag, which usually wasn't much to look at. Another doctor came in around 5:00 AM and then a gaggle of med students, interns, and doctors came in around 6:00 AM. I think they came in those early hours, so I wouldn't remember to ask any questions or tell them of any concerns I had. Some of them looked very serious, or maybe they were tired, too, and some were smiling. I asked one of the surgeons if he had ever had a tube down his throat, and he one upped me by saying, yes, he had had to put one in his own nose, as well as give himself IVs, during med school. The young students with him said they hadn't had to do that. I think they should reinstate that process to up the empathy factor from doctors. Actually, I think they should all have to spend a few days in the hospital to see what it's like. I know some med schools actually have the students be admitted for imaginary illnesses and the nurses are not aware, so they are treated like the rest of us. Of all the nurses and CAs I had, only one nurse and one CA were not on par with the rest. Mostly, they were all compassionate, helpful, kind and encouraging. 

The walking and non eating went on for days with no ostomy bag success. I had even graduated to real food, some of which was actually okay, but my bag was still empty. After five days of this, I started feeling really bad. My head hurt and I was achy all over, kind of like a bad flu. They gave me pain meds and warned me about needing to put a tube in my nose and down my throat if this continued. The threat was not enough to make my body respond, so a nurse put a 24 inch (2 feet!!) tube in my nose and down my throat. Do not try this at home. She first looked up my nostrils to see which one would accommodate the tubing and the lucky left nostril was the winner. I don't recall much about the actual insertion, except that it wasn't pleasant. I had to hold my head at a certain angle and I think they lubed the tube up with something before inserting it. Every time I swallowed, it hurt. It felt as if a huge pointy object was in the back of my throat. Blowing my nose was a challenge. Behind me hanging with the IV fluids was a container which was full of the green bile that they were extracting from my stomach with the tube. The reason I had started to feel so sick was that I was blocked on both ends. So, they kept the tube in my nose until it started running clear and they continued to monitor the ostomy bag. I was also put back on a liquid diet. Since I was unable to pee on my own, I had to get a catheter. A student nurse was excited to watch the catheter insertion on a woman (me), and her response after it was in was that she expected it to be more painful, because the guys usually cried when they had to be catheterized. It took two attempts for the nurse to get the catheter in, because the first one was too large. Another time, I told the nurse that my port was hurting, so she let a student nurse deactivate it and reactivate it. Unfortunately, the reactivating part did not go well, so it had to be done again. I was grateful when the nurse asked the student if she wanted to try the second time and she said "no."  

Eventually, I was able to produce some liquid poop and the bile was gone from my stomach, so they removed the nose tube. A doctor came in to remove it and told me on the count of "3" he was going to pull it out. I think it took two yanks to get it out. When he tossed it in the trash, I took a peek. After he left, I fell asleep and dreamed of snakes. Later that day, they took out the catheter, too. 

I had several visitors while I was in the hospital, most of whom just showed up and surprised me. My walking buddies from work walked from the office to the hospital, and that was a nice surprise. Another friend, who had helped me through my brother's suicide earlier this year, came and stayed for a long afternoon and stood up to the CA who was bullying me. This CA needs to find another job. I would suggest something in a correctional institution. And two grade school friends who live in California and Cape Cod who were in town, contacted me to go out to lunch, but since that wasn't an option, they stopped by to visit. Another friend from college and his wife called and set up a visit on a Sunday. She brought fresh peaches and ended up making me a peach dessert using the the slim pickings of angel food cake served with my dinner. After she did her magic and added some vanilla ice cream, it was not only edible, but delicious! My best buddy neighbor visited more than once and her husband came with her on one visit. Two special friends who live in California called me many times. Local friends called or sent beautiful flowers, plants, and cards. My nieces and my sister-in-law also visited. My brother and his wife, who have been with me every step of the way, came many times and brought fresh lavender, a speaker/charger for my iPhone, and anything else that would make me feel more comfortable. My brother's wife went to bat for me over and over when things weren't going well, or I wasn't getting a timely response to something I needed. She was and continues to be a great advocate for me. I wish I had a video of the night when the nurse was changing my ostomy bag and my sister-in-law was there. Maybe it's just me, but ostomy poop smells like no other. It's rough. While he was changing the bag, she was doing some grand jete ballet steps across the back wall, spritzing lavender as she danced. 

A few days after the tube was removed and the poop was forthcoming, I was told I could go home. It took awhile for the doctor's orders to get to the nurse, but finally around 2:00 PM on Sunday (after 11 days in the hospital), I was able to go home.    

When we pulled up to my house, my housemate and my neighbors and their niece were standing at the bottom of my driveway waving strips of brightly colored, lacy fabric under a banner over the carport that my housemate had made which said "Welcome Home." I could see my dogs standing in the foyer. At last, I was home!         

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.