I'll CCU in my dreams.

On Saturday morning, I woke up with a headache that reminded me of the one that announced the hemorrhagic stroke I'd had 17 years ago. I called my brother, and he came and took me to U of L emergency room, where I'd requested to go, because they have all my records, and I like the staff there. From Saturday at 10:00 AM until Monday morning at 1:30 AM, I was in the emergency room with every sick, hurt, loony or druggy person within a 100 mile radius of the building. I did not get a room in the ER, because they were full, so I was in a corner with two other beds with curtains between us. It could have been worse, because there were others on beds in the aisles of the ER. 

In my little corner, during my 2 day stay, there was a woman who thought she'd had a heart attack but didn't, a man who threw gasoline on his gas grill and burned his face, a man who fell asleep on his motorcycle and apparently had no injuries because of the helmet and leather clothing, another man who came from Cincinnati to Louisville to "find himself" but apparently didn't, a man who fell off a roof and broke his ankles a few months ago and was concerned that he might have an infection under one of the casts, a man who thought he was having a heart attack but it was pancreatitis, a man who was camping in Mississippi and got bitten by fire ants, and more roommates whose issues I can't recall. The curtains between us didn't quite keep their voices from carrying. The guy with two broken ankles did not stop talking the entire time. He talked to his friend, and when the friend left, anyone who walked into his space was fair game for his electrifying monologues. I think he was either talking on the phone or to himself the rest of the time. I was more happy than he was, when he was released.

When my family and friends left to get some rest, I had to take my 80 pound purse with me to the restroom which was at the end of the hallway. I looked so fashionable with my big, expensive, leather purse (the one I got to carry my colostomy equipment in) hung over my hospital gown, my loose, black, workout pants, and the yellow no slip hospital slippers. The restroom smelled strongly of urine and had used band-aids, paper towels, and blood on the floor. After a few visits, I started wearing non latex gloves when I went in there. By doing that, I didn't have to wash my hands afterwards or worry about the door knob when I left. A few times when I went in there, the seat was up, too. That never happens at my house! 

They didn't give me anything to eat until Sunday morning around 9:00 AM, but no one woke me until a few hours later, so the food was cold, and bad, as usual. It consisted of two cold pancakes, some horrible cold coffee, and some warm orange juice. Even starving, I couldn't put those pancakes down. When my brother and sister-in-law came by that morning, they brought me Ghyslain coffee and croissants, a much, much better breakfast.

While in the ER, they did a CT and an MRI. Neither showed evidence of a stroke (yay!), but my troponin (enzyme) levels were raised, so there was a concern about a heart problem. They wanted to do a heart cath, which I was not excited about. The nurses came by and said I was going to get a heart cath, and then the resident doctor came by and said he didn't think I needed one. At 1:30 AM on Monday, a nurse woke me and said "I've got some great news!" and I expected him to say "You don't need the heart cath", but instead the news was that they had a bed upstairs for me, which was still pretty good news.  

Meanwhile, in the ER at different times during my stay, I listened to screamers, very dramatic and loud vomiting sounds all made by men, my neighbors talking on the phone or to their visitors or themselves, my roomies' TVs, and sirens. I saw a man being held down by two EMT guys, so the nurse could get his vitals. I saw a man with a really beat up face in a bed in the aisle. I saw young girls walk in with shorts, which was a big mistake, since the temperature in the ER is about 40 degrees. I had 4 blankets over me. At one point, the ER finally went into "diversion" mode, meaning no more ambulances could come to U of L hospital.

They monitored my troponin and blood pressure watching to see if the troponin would go down after they gave me some blood pressure meds. They also gave me a heparin drip which decreases the body's ability to clot. They said it can also cause an increase in troponin levels. So they continued to monitor my troponin, and it finally went down. They decided that it hadn't gone down quickly, because I may have been on the drip too long. They also wanted me to do a stress test, which I did. For a stress test, they lubed up some places on my chest, and took some images of it, by pressing a wand around my chest. Then I had to get on the tread mill and walk for at least 9 minutes or until I reached some magic number pertaining to my heart beat level. I didn't make it to 9 minutes, but I reached my magic number. I passed the stress test, too, which meant I didn't need the heart cath. They also could tell by how quickly the heart beat level rose when I got off the bed and stepped on the treadmill that I was dehydrated and needed water after the test. 

When the cardiology team finally appeared, after I got a room in the CCU, they said there was one last thing they wanted to check, and that was whether I had a blood clot in my lungs. If I had one, I would need to be on blood thinners for the rest of my life. I had a terrifying moment, when I thought they were going to give me an IV instead of using my port, but it turned out that the power port was good to use for the contrast needed for the lung CT scan. When the CT scan came back negative, I was finally told I could go home, which ended up being around 6:15 PM Monday.

I have to mention that all the nurses and doctors I had interactions with were great. Nurses need to know a lot about many different conditions, and most seemed very knowledgeable. I was especially impressed by my nurse in the CCU. Her knowledge, attitude, humor, patience, and empathy were all fantastic. She had been a nurse for many years and was still doing it right. I also saw my nurse friend, George, while in the CCU. He just happened to be coming to my floor to do a procedure on the person in the room next to mine. He was quite surprised to find me there. One of the cardiac doctors that I met there was also top notch. Being a doctor is about his 5 career move. One career was at the health insurance company where I work. He is doing his cardiac rotation now, but wants to be an anesthesiologist. He came back several times while I was in the ER and also when I was in CCU and told me what was going on and explained things to me. If he didn't know the answer, he told me he'd find out and he did. He was very kind and upbeat and had a great smile. It's too bad he wants to be an anesthesiologist, because they have limited contact with their patients, although his bedside manner will help put people at ease before he puts them to sleep.

When I was preparing to leave, I got on the potty chair. There was a knock at the door, quickly followed by a head poking in the door, and when the head saw me sitting there, he (the doctor who was discharging me) apologized and left. Next, I was sitting on the bed facing the door, getting dressed with only my pants on, when there was a knock, followed by another doctor opening the door, and suddenly sticking his head in. He, too, quickly apologized and left. He went back to the group and said he'd walked in on me while I was dressing, and the other doctor said he'd walked in on me sitting on the potty chair. Another example of how guys are always in competition and have to one up each other for everything. 

Finally, I got dressed and got home and went to bed where the only crazy person in the room was me. My three dogs and one cat were all there, too. I slept for 12 hours. Today, I rested at home and worked on eating more and getting my strength back.

I can only imagine what the bill for three days in the hospital will be. After multiple tests for a stroke, heart problem, and blood clot in the lungs, the final diagnosis was that I have high blood pressure. In all my recent visits to various doctors, my blood pressure was great, so why it's suddenly jumped, causing the horrendous headache, will remain an expensive mystery.     

No pain, no cane

It's been over a month since my last post, and I've been very busy. And my old plumbing has been working overtime. Sometimes, it doesn't give me adequate notice that it's time to "go," so I have to step on it and sprint to the bathroom. Sprinting has become more of an ordeal than usual. The usual ordeal involves my three dogs walking to the bathroom with me. One runs ahead, another walks slowly in front of me in my narrow hallway and stops and turns around from time to time to make sure I'm still coming, and the third one stays behind me. When I finally get seated, the one who walks slowly in front of me sits down next to me and assumes that this is the perfect time and place to be petted. He is delighted that I am in there as often as I am. Sometimes, the other two come in for petting, too, but mostly it's just my boy and me. 

The other reason sprinting has become an ordeal is that I now have peripheral neuropathy either from the chemotherapy or sciatica or something else. It's only affected my left leg which prompted my medical oncologist to say that it's probably not from the chemo, because it's usually bilateral and happens when people got more doses of the offending chemo drugs than I got. But my PCP said she has had lots of patients who had the same symptoms I had, and they had had Taxol like I had. I also read that Cisplatin, which I also had, can cause peripheral neuropathy. Both Taxol and Cisplatin were in the TIP chemo regimen that I had before the regular chemo and radiation started. The TIP regimen significantly shrank the tumor.

Regardless of what caused it, it is keeping my life from getting back to my "used to be." It started back in March or April. I don't remember when, but I do recall that for a time, walking felt the best, sitting was a little painful, and lying down was very painful. I used a heating pad at work on my back and hip. I was able to walk with my walking buddies at lunch time, but I was slower. While I was in the hospital for the colostomy reversal, I got the physical therapist to come to my room and show me some exercises. That was back at the beginning of May. I've talked to my colo-rectal surgeon, my medical oncologist, my PCP, a chiropractor, a massage therapist, and an acupuncturist about it. No one really knows where it is from, but they all have given me exercises to do. I am still seeing the acupuncturist and the massage therapist, and I've been attending classes on meditation. When I leave the acupuncturist and massage therapist, I get temporary relief and don't need to use my cane. But after a while, the mojo wears off, and I'm back to the pain and my cane. I wouldn't have had a cane to use, but I had given one to my Dad years ago, and when he died, I brought it home with me, never imagining that I'd need to use it. 

I'm on drugs for nerve pain and regular pain, but the nerve pain is able to rise above the drugs and surprise me with sharp shooting pain in my calf, shin, foot, and big toe. Basically, I've got pain 24/7, but sometimes the drugs are able to keep it at bay. It's worse when I wake up in the very early morning for a bathroom visit. Then, I have a hard time falling back to sleep. What's weird is the areas that get the sharp shooting pain are numb to the touch. Besides the pain, there is a feeling of heat, as if someone were constantly burning my skin. The top of my foot hurts after I wear shoes for a while, so I go barefoot a lot, at least when I'm home. Although I'm very careful moving around, sometimes the tip of my foot, which I can't feel, gets stuck on the end of the rug, and I'll trip, but I'm usually able to stay upright. Recently, after a massage, I was trying to straighten a rug runner that the dogs had moved while rough housing. I straddled it and fell, landing on my rear, and felt stabbing pains running through my calf and foot. I stayed on the floor for a minute surveying the damage, and when I saw all was okay, I got up.

A few days ago, I rammed my right little toe into the cane, because I think it's important to balance out the pain, although the left side is winning. Early this morning, when I got up for a bathroom visit, my cat walked in front of me, and I tripped, and my big toe curled under, and it has been hurting ever since. The intermittent, high frequency, stabbing pains I've had today in my calf and big toe are the kind that actually make me exclaim something appropriate out loud - from my meditation class, I've learned that the appropriate Buddhist thing to say would be "Hi pain. I am aware of you. Please come in and have some tea." I tried that the other night, but the pain took advantage of my kindness and is probably a fundamentalist of some sort. When the cat's tail brushes against my skin, it hurts. Sometimes, I'll think one of the dogs or cat is touching my leg, but there's no one there. At times, it feels like there's a hot vise around my foot below my toes. Right now, the arch of my foot is on fire and there's a pulsating pain there, which I don't want to serve tea to. 

My next step is to talk to a woman who was introduced to me by the executive director of the volunteer organization I have joined. She is also a volunteer who had cancer and now has neuropathy. I'm hoping to get some insights from her. I have also made an appointment to see an orthopedic doctor who may write a prescription for physical therapy. At some point, I'll run out of options and will either have rid myself of this miserable condition or have learned to live with it. If I must live with it, I reserve the right to yell curse words or kind Buddhist words if I become enlightened, when it's warranted. 

Now, if you'll excuse me, I've been dragging my feet, because I hate to cook, but I need to hot foot it into the kitchen and make some dinner. Until next time, remember to put your best foot forward and toe the line.

Holy shit!

While I was waiting for the day of the gastrografin enama test, I called my colo-rectal surgeon's office to find out what kind of surgery I would need if the fistula had healed itself. The nurse called me back and left a message that the only surgery I would need would be taking down the colostomy. This was great news, even though I was worried about how long it might take my "plumbing" to start working again. The only way you can leave the hospital after a colostomy is reversed is to poop. You know that old saying, "The proof is in the pooping."

After the test showed the fistula had healed itself, I met with the colo-rectal surgeon, and we discussed when the reversal surgery could take place. I wanted it as soon as possible. She spends a lot of time traveling the world doing research and teaching, but she had an opening right before Derby, on the last day of April, so I took it.

I had to be at the hospital at 6:00 AM, and my brother took me there and stayed while I went through pre-opp. The nurses and I had the same discussion that I have every time with them about using my port and not giving me an IV in my arm/hand. For the exploratory surgery when my doctor sedated me to probe around for the fistula, which was done in an outpatient area in the basement of her office building, they used my port until they sedated me, and then they put the IV in. They also took it out, before I went into recovery. In fact, I didn't know I'd had it, except for the bandage over the area where the needle was. This was ideal. However, the pre-opp nurses at the hospital would have none of that and insisted on poking me near my hand. They didn't seem the type to be swayed by tears, so I just went with the flow. I admit, she did a good job, and she did numb it first. 

We are now at another part of the story that I don't remember big chunks of. I know my brother had to leave to go to work, because he was the only one in his office that day, but I don't remember when he left, or when my sister-in-law showed up. Apparently, the amnesiac they put in the sedative works well. I do remember some of the dilaudid block (GI block). From what my sister-in-law said, I was in a lot of pain, and the morphine wasn't working well. I don't remember being in pain, but I remember the doctor being there with the ultrasound equipment. I think I had to lie on my side while he administered the block. After reading the description of it, I'm glad I don't remember it, because it was a 4 inch needle administered subcutaneously. Subcutaneously means in a fatty layer just under the skin where there is not much blood, so the medication can be absorbed slowly.

I guess once I was out of pain, I could concentrate better on making comments like "Let the poop begin" and offering ice chips to my sister-in-law and telling her it was bacon. I also told the nurse who said I should push the call light if I needed anything, that I would "let my love light shine." That dilaudid block was great!

According to my sister-in-law, I didn't get into a room for many hours. I don't remember this either. I did go to the floor where I had been when I got the colostomy, and my room had a decent view of the Pegasus Parade. My walking buddies from work showed up either Thursday or Friday and that was a nice surprise. I didn't end up with any visitors the night of the parade, because no one could get through the traffic maze downtown. 

As expected, I was given clear liquids for a few days, and I couldn't get much of them down, because they was disgusting and were foods that I don't like, like jello. Who wants to eat chicken broth and jello for breakfast, lunch, and dinner? I wasn't worried about not being able to produce poop, because I'd read that you still do or doodoo, even if you don't eat for a while. At some point, they switched me to a full liquid diet, which was a little better. I was able to have things like cream of chicken soup. 

Friday, I felt good enough to work on my laptop, which saved me from losing another vacation day. After having to stay in the hospital 6 extra days for the colostomy surgery, and after my doctor said I should plan on about a week for the take-down, I figured I'd be there at least a week. But on Friday, a little before the fillies were set to run at The Kentucky Oaks, this nag was sprinting to the bathroom in a bid for the real home stretch. When the deed was done, I was so excited. I pulled the help button next to the toilet, and as luck would have it, the CNA who opened the door was the cutest, 20 something year old male CNA I've ever seen. He said "Can I help you?" and I said, "I pooped." He responded, "Do you need me to help you?" and I said, "No, just tell the nurse I pooped, because that's what I have to do to go home." If I'd known they weren't going to ask for proof, I would have told them I pooped on Thursday after the surgery on Wednesday. By the way, without knowing the odds or who was the favorite, I picked Untapable for The Kentucky Oaks, just because of her name. 

Because it was so late in the day, I stayed in the hospital another night and was released around noon on Derby day. My neighbors came to take me home. It was so nice to leave the hospital without the waste around my waist. I felt good and strong and happy to have gotten over the latest hurdle. The next test would be whether I would recognize the signals to head to the bathroom, and whether I would make it on time. My first day home, the answer was "the old grey mare, she ain't what she used to be, many long years ago."

Unexpected good new

Almost a month has passed since I last posted here. A lot has happened and most of it was really good. 

When I went in for the gastrografin enema, I told the tech that I was concerned that it would hurt because of the radiation I'd had. He went and talked to the doctor, and the doctor decided to use a much smaller apparatus instead of the longer one with the balloon. I found out the balloon is inflated after the apparatus is inserted to hold the cannula in place, while they fill up the area with the liquid. The smaller apparatus didn't hurt at all, and the doctor told me while he was viewing my insides that he didn't see the fistula. He said he would need to review the x-rays, but from what he could see, the fistula was gone. The tech later told me that all the liquid went straight to the ostomy bag. Plus, I was told that I should wear a pad, because I was going to leak all day, but that didn't happen either, because the liquid went to the ostomy bag. 

I waited for the results and took them to my colo-rectal surgeon. She was very pleased that the test confirmed the fistula had healed itself and got up from her chair to give me a hug. She said she was so happy to be able to give good news for a change. I asked if it was very common for a fistula to heal itself, and she said it was very unexpected. While fistulas can heal themselves, they tend to grow even larger from radiation, and my radiation oncologist had told me early on that he was 100% certain that I would have the colostomy for the rest of my life. While I was discouraged from his statement, I decided to believe my colo-rectal surgeon who had told me that she would do whatever she could to reverse it. And she was true to her word - more about this in the next blog.

She and I had had a previous conversation about other surgeries that she could perform if the fistula were still there, and they were not easy surgeries or easy recoveries. One type of surgery was possible if the fistula were small enough and low enough in my vagina. This surgery is called graciloplasty and the gracilis muscle is a little used muscle on the inside of the thigh. "It can be turned upwards to be used as a living transposition muscle flap to cover or repair damaged tissue." The other type was even worse and involved two surgeries. First, I would have switched from a colostomy (large intestine) to an ileostomy (small intestine) and that would have had to be in place for two months while the area of the second surgery healed. The second surgery, called a colo-rectal anastomosis would have meant removing some of the rectum where the radiation had done damage, then pulling the colon down and creating a J-pouch out of the colon where the waste would go. Then the colon would have been sewn to the remaining part of the rectum. Fecal incontinence is not uncommon after anastomosis surgery and exercises to strengthen the anal muscle are needed. Dehydration is somewhat common with ileostomies. Also, with anastomosis surgery, because the J-pouch is where the waste goes, and the construction of the colon is different from the rectum, I would have had to learn new signals that I needed to poop. The rectum has a very sophisticated collection of nerve endings in it which send signals to the brain letting you know that you have gas, poop, or liquid. (Apparently, this collection of nerves isn't so sophisticated as you age, because sometimes, we seniors think we have gas, but it's poop. Surprise! Are you wearing your Depends?)

Luckily, I got to avoid those surgeries, because the fistula healed itself. The unexpected good news of the fistula's departure balanced out the unexpected bad news that I had cancer, which I might not have discovered in time had it not been for the appearance of the fistula. Maybe it knew it was no longer needed and went away. I don't know what caused it to close up, but I admit to doing some visualizations of it closing, and I know many of you were saying prayers, sending good vibes, and healing thoughts my way, too. Whatever the reason it healed itself, I'm grateful. 

It's almost party time! I'll bring the balloon!

It's been a while since I last wrote. But it's a sunny, warm, Spring evening and that makes me want to stay indoors and write. Actually, I've already had two walks today, and I'm enjoying a breeze in my sun room, so I'm not as nature deprived, as I pretend to be.

Since I last wrote, I have seen my colorectal surgeon twice. The first time was regarding reversing the colostomy. She did a brief exam of my lower orificia (that's the medical plural for orifice). I have been on this type of examination table more than once. I laid on my stomach, bent at the waist with my knees on a shelf lower than the table. Then they pushed a button, and my head went down and my rear went up, and she did her exam, apologizing the whole time because of the pain she thought she was causing. Actually, it was not bad, because she was being very careful. She also looked at the report of the PET scan and seemed pleased with what she read. Because she didn't want to hurt me by doing a more extensive examination, she set up an appointment for me to be sedated. During the next exam, she also scheduled another biopsy. 

So my brother took me to the outpatient surgical center, and we met some very nice nurses who covered me in warm blankets and connected a tube to my port (I love my port!) and dripped some saline in there, while I waited for the procedure. The anesthesiologist came and asked me a lot of questions, and then my colorectal surgeon showed up and checked what the nurses had written down. I told her and the anesthesiologist about the pain I'd been having (and am still having) in my left buttock and down the side of my leg and in my shins. After a few questions, I think they were convinced that it was not a sudden recurrence of cancer. I had thought it was sciatica, but now that I've read some things about it, I am not sure what it is. It hurts most when I'm lying down and has been interfering with my sleep. It feels best when I walk, and it hurts a little when I sit. I will see the radiation oncologist next week and tell him about it. Maybe it's a side effect from radiating my pelvic area.

Okay, so finally it was time for the exam and biopsy. Two nurses rolled me back to the operating room (in my bed) and one told me that what they had just pumped in me worked very fast. I told her I was still awake, and that's the last thing I remember. My neighbor came to pick me up and took me home. My throat wasn't sore from the anesthesia this time, but I did have some bleeding from the biopsy and probing. I wasn't groggy and was actually able to work from home for 5 hours that day. Since I used up 5 weeks of vacation time during the surgery, chemo, radiation, and side effects, I have been trying to make up the time I miss, so I don't lose any more vacation days. 

The results of the exam and biopsy were surprising. The biopsy showed no cancer, which was not that surprising, since that was what the PET scan showed, but the exam showed no evidence of the fistula. According to my doctor's nurse, she had really poked around while I was anesthetized trying to find the fistula. What is odd is that not only can radiation cause a fistula to form, but if you already have one, as I did, it can enlarge the opening. But mine was nowhere to be found, which was unexpected, good news. 

So now, we get to the party part of this posting. There's yet another test to see if the fistula is hiding somewhere. On 4/22, I will get a gastrografin enema. You may not know what gastrografin is, but I'll bet you know what an enema is. Gastrografin is a "palatable, lemon flavored, water-soluble iodinated radiopaque contrast medium for oral and rectal administration only." I'm sure my rectum will be delighted with the lemon flavor. I hope it doesn't sting the radiated tissue. The nurse mentioned that a balloon would be put in my rectum (party, party!), and then the liquid is pumped in and x-rays are taken. I asked the nurse if I would be sedated for this procedure, and she told me that I would not be, because it doesn't hurt, it's just embarrassing. Whenever someone in the medical profession tells me that something does not hurt, I wonder if they have experienced whatever it is that doesn't hurt. But don't you worry. I will soon have first hand, or first ass, knowledge of this procedure and will tell you whether it hurts or not. As for being embarrassed, I think all the previous experiences have made me immune to embarrassment. But if I walk into the procedure room and see Sybil's mother at the piano, I'm outta there! (If you haven't seen or heard of the movie "Sybil," check out http://moviebuffs.livejournal.com/2047467.html.)

I can see clearly now, the cancer's gone

I met with the medical oncologist today, and he was more upbeat and confident this time than he was the last time I met with him. He said the news was good, and that I appear to have some scar tissue from the radiation, but the cancer is gone. I read the radiologist's report, and it sounded much better than the first PET scan I had in August. My tumor had been 5.3 cm x 5.6 cm and the standardized uptake value, SUV, was 11.8.  

SUV refers to the level of activity in a specific area compared to activity elsewhere. Cancer cells are the fastest growing and show the highest SUVs. The baseline of 1 is normal activity while anything higher that 2.5 can indicate metastatic cancer. It can also indicate inflammation which can be the result of radiation, surgery, or injury. Now, the "mass has significantly decreased in size and intensity of FDG uptake." What is now seen at the site of the cancer appears to be about .9 cm x 1.9 cm and the FDG uptake is similar to the background tissue and is "likely representing treated disease with mild post radiation inflammatory change; however, continued attention on followup is recommended to exclude small volume residual disease." My limited understanding of the FDG uptake is that there is glucose in the radiotracer and cancer likes sugar, so where there is cancer you will see a lighter, brighter shading on the scan. The metabolic activity of cancer cells causes them to appear "hot" on PET scans. My SUV is now a "maximum of 2.0," and my lymph nodes also looked good. 

So, I feel pretty good about this and am hopeful that the next PET scan in 3 months will show the same or better results. Maybe by then, someone will develop a better tasting pre-test liquid, because what I had was awful. I don't even know what it was for, because they injected the radiotracer in my port. I did get a nice surprise when I started drinking the second glass, because it tasted like water. After several sips, I realized it was water. Things are not always what they seem.

I'll take "radiation side effects" for $400, Alex.

My good news from Dr. BigHands was followed by some other news from the MRI and CT scans. Apparently, there is still something at the site of the cancer, although it's smaller than the cancer was, and it hasn't been determined if it is cancer. It may be scar tissue or radiation reaction or granulomas. The radiology doctors who read the scans did not come out and say it was cancer, but they hinted that it could be. At least, I think that's what they said. It was in some foreign language, or it may as well have been. I could barely pronounce some of the words, much less understand them. Here is a sampling. Marcel Proust would have been proud of the first sentence:

"Again noted is positive treatment response with persistent thickening and irregularity of the rectal wall approximately 9 cm from the anal verge along the omental aspect from approximately the 12:00 to 6:00 position, measuring approximately 2 cm x 1.4 cm with persistent areas of restricted diffusion as well as scattered patchy enhancement." 

"Adjacent blooming artifact in this region is noted."

I don't know whether to be proud or nervous.

On Valentine's Day, I will be getting a PET scan to see if it picks up cancer there. I think my medical oncologist said that it would be definitive, if it found cancer, but if it did not, I would need further testing, such as a scope to see what is actually there.

So, I'm not out of the woods yet. I'd like everyone to say a prayer or send good vibes or visualize that there is no cancer remaining and that whatever is there is something I can live with. My guts tell me that it's not cancer, but my guts forgot to tell me when the cancer first showed up, so I'm not sure how reliable they are. 

I'll post again after I get the results of the PET scan which should be on 2/17 after I meet with my medical oncologist. I'm hoping that the PET scan shows nothing, and that the subsequent scope will also show no cancer and that all systems will be a "go" for a colostomy reversal. 

Hand jive or Dr. BigHands gets down and dirty

I met with Dr. BigHands today, and he earned his name again. He warned me during my first exam many months ago that this exam would be very painful, and he was right. Thanks to the radiation, my vagina and rectum are apparently smaller, narrower, and less supple. I had to be physically (manually) examined in both my vagina and rectum. I almost broke his nurse's hand when I grabbed it and squeezed it, while he was doing his exams. First, was the vagina and he did a forceful 365 degree exam, then the rectum with the same process, then both simultaneously, but without the 365 degree turns. What fun! What glee! I'm pretty sure that for part of the exam, my ass totally lifted off the table. When I left, I asked the receptionists if they heard me yelling "Ouch, ouch, ouch!!!" during the exam, but apparently, the doors were thick enough to muffle my screams. 

I mentioned to him that I didn't think I'd be able to have sex again, so he told his nurse to get me some dilators which I had read about. You get varying sizes of these things that look like dildos without any curves (hallelujah!) and some lubricant and insert them for 10 minutes 3 times a week, trying to undo the radiation damage and increase the size of the vagina. She gave me two sizes and a tube of lubricant in a small brown bag, so that it looked like I was carrying a bottle of beer when I left. As I laid the brown bag down in the car, I was thinking about how it would look if the police pulled me over and wanted to see what was in the brown bag. I was hoping I had the instructions handy, so I could show them what they were for. 

After the painful exam, Dr. BigHands announced that the cancer was gone, and that he was very happy. I was happy, too, and I'll be even happier if the MRI scan in a few days confirms his findings. I will also get a CT scan later this month - the CT scan will show the lymph nodes and the MRI will show any mass that is there. And in mid-February, I will meet with the colorectal surgeon to see if she can reverse the colostomy. Dr. BigHands still stands by his prediction that I will have the colostomy forever, although, he said the fistula was actually smaller. I told him I still wanted to meet with her to see what she says. He said he would be delighted if she could reverse it, because then she could help a lot of his patients. 

My first trip to the bathroom when I got home was electrifying. When I started to pee, it felt like I was being stabbed, similar to what happened when my skin broke down during radiation, and the uric acid went in the open sores. So, I'll have to put some prescription cream on the "wound" and pour water between my legs when I pee to dilute the acid and reduce the pain. But, it's a small price to pay for the good news I got today.  

Hurry up and wait!

My last radiation treatment was on December 4, 2013. Because the radiation keeps working after the treatments end, I must wait to get the CT scans done. I am also waiting to meet with three of my doctors. I'll see Dr. BigHands, the radiation oncologist, on 1/20 for a physical exam. On 1/29, I will get the two CT scans and will meet with my Medical Oncologist to go over the results on 2/3. Then on 2/11, I will meet with the colorectal surgeon to discuss whether the colostomy can be reversed. Radiation can cause the fistula to enlarge, which might make the reversal difficult or impossible. I am reeeealy hoping that the colostomy can be reversed. 

Not much else is going on, I'm just in a healing and waiting mode. I have gone back to the office and am working full-time there. I prefer working from home, but I like being back at work, because there's a group I walk with at lunch, and now I'm able to join them and get some exercise. Last week, I got in 5 days of 10,000 steps/day (5 miles), which I haven't done since I first was diagnosed back in July. This is also good because I get a lot of laughs during our walks. One day, I laughed for about 5 minutes straight, to the point of tears. Even now, when the key words "Come, Follow Me" are spoken, we all laugh. (You had to be there.)

I'm eating okay, but food has lost its appeal. It's nothing to do with the taste, because everything tastes okay. I just have a hard time coming up with foods that sound good. Salads, fish, and beef are on the short list of appealing foods. My sweet tooth has not come back, but I think that's probably okay. 

My hair is coming back, but at a painfully slow rate. I wear a hat most of the time, just because my head gets chilly otherwise. I must have heard 1000 times how lots of people's hair grew back a different color and texture after they had chemo. I can't tell the texture yet, but mine is grey which is what it was before it all fell out. I was hoping for curly red hair. 

I still haven't gained all my weight back, but I'd like to not get to the weight I was previously anyway. I think I'm within 5 pounds of my desired weight. 

I've started reading for pleasure again. After my brother's suicide, I started reading books about suicide and death, and when I was diagnosed, I started reading about cancer and healing. Now I'm reading light and funny novels and would love some book titles, if you have any to suggest. 

I ended the year with another trauma. I was walking my three dogs on our regular route, and we were walking down a small hill when Finn, my Golden boy, decided to do his stop, drop, and roll at my feet. He does this 5 or 6 times when we get to the grassy area, but usually, he is on my side or far enough in front that I can stop. This time, I couldn't stop, and I also had some momentum from the other two dogs pulling me downhill on their leashes. So, I catapulted head first into the ground - my arms were out at my sides holding the leashes. I landed on my nose and was wearing sunglasses which dug into the bridge of my nose. I heard a crunching sound in my neck. I had grass in my mouth. After I composed myself, I rolled over and sat up. I felt my teeth with my tongue to see if they were all still there and in one piece. My teeth were fine. I sat there for a bit and saw the three dogs in front of me, still on their leashes. Finn was behind Shelby and his expression said "I have no idea what just happened." Shelby came up and licked me on the face. I think she "got it." Tess also looked bewildered. We continued on the walk. I wish I had a video of the free fall, because I am sure it was funny. 

I was happy to see 2014, although I didn't ring it in. I'm hoping for a better year and getting good CT scans and reversing the colostomy would be a great start. Wish me luck!

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.