Tattoo You

The title for this post was taken from a Rolling Stones album that came out in 1981. I've never been much of a Stones fan, but since the album is from the year I graduated high school and since I'm going to talk about tattoos, I guess it's at least tangentially appropriate.

My last Big-Bad is coming up this week, December 3, to be exact. My birthday is 10 days later, December 13. I'm thinking I want to get a tattoo for my birthday. Specifically, I want to get a design that symbolizes survival since I will have survived the first stage of my breast cancer treatment. I would like, I think, to get something that I can add on to at each stage of treatment and survival that I reach: when I finish Taxol, when I finish radiation, when I finish breast reconstruction, when I reach 2 years, 5 years, 10 years, etc. (assuming I make it that long). I have already checked with the Good Nurse Sue, who told me that as long as my white counts are good when I get the tattoo, she has no problem with it. I've also already checked with my supervisor, Suzanne, who tells me that the library does not have a policy banning visible tattoos. I'd like to get it on the inside of my right forearm, I think, perhaps wrapping around my arm; I also want black work. When I first started to think about this idea, I did a simple Google image search on "survival symbols," and one of the first things that popped up was bamboo. This page was one of the first I looked at, and after many hours of looking at other pages, I still like many of the images here best. Never having gotten a tattoo, I have no idea whether a competent ink artist could adapt one or more of these images into something that would look good going up the inside of my forearm or wrapping around my arm. The reason this page came up in my search is because of these words on it: "Bamboo, because it is flexible and can withstand storms without breaking, is a symbol of survival in adversity." I like that.

I have also thought about doing some sort of saying in Elvish from J.R.R. Tolkien's "Lord of the Rings". I believe I mentioned this somewhere on Facebook, but I don't think I've talked about it here. I've read that people who personify their cancer and visualize something killing it often fare better than those who don't. So when I've tried to visualize my cancer, I have thought of the Nazgul from LotR, and I've thought about Arwen saving Frodo in the first movie, which I watched again just last night. When I'm in the throes of a Big-Bad, I feel just about as bad and helpless as Frodo does after he's stabbed by the Nazgul, and I probably look almost as bad. When Aragorn, Sam, Merry, Pippin, and Arwen are doing everything they can to save Frodo, it's like Kyle and my friends supporting me, as well as the medical team treating me. But Arwen riding off to Rivendell with Frodo and managing to outride and drown the Nazgul -- that scene is absolutely riveting to me (made me cry last night) and is what I imagine when I try to visualize beating this cancer. So that's why I've thought about either a saying in Elvish or an Elvish design from the book. Maybe I need to pull out my copy of the trilogy and see what it is that Arwen actually says in that scene to make the waters rise (if it's even in the book).

These are the two ideas I've had so far. If you have an idea that you think might appeal to me, I'd love to hear about it. My friend Eric suggested some sort of design from World of Warcraft, but I can't really think of anything from there that I'd want to live with and look at for the rest of my life.

So far, in trying to research artists in the DFW area, I have found the following (some are in Austin; if I chose to work with one of these, I'd have to wait until next February when I will be in Austin for a conference). If you know anything about these or other artists that I haven't found yet, I'd be grateful for any info you can provide. I obviously will be living with this ink the rest of my life and want to be absolutely sure that I am working with someone who is not only a great artist (i.e., does a LOT of custom black work) but whose shop is also known to be clean, clean, CLEAN. The problem with most of these is that they all seem to specialize in color.

Elm Street Tattoos (Dallas)

Perfection Tattoo, Chris Trevino (Austin)

True Blue Tattoo, esp. Rachel (Austin)

Rock of Ages, esp. Hector (Austin)

Diablo Rojo, esp. Raul (Austin)

Psycho Clown Tattoos (Fort Worth)

Randy Adams (Fort Worth)

Thanks in advance for any advice or ideas you may have.

As for the past week, I am SO VERY thankful that it has been blessedly almost side-effect free. Everything I discussed in my last post is either entirely resolved or almost gone. I had a horrible day on Wednesday with seasonal allergies, but that obviously has nothing to do with chemo. They seemed to improve on Thursday and now I've just got a few sniffles here and there. I have NO mouth sores, which is simply amazing. I don't know what's working right, but whatever it is, I hope it repeats itself next cycle.

We had a really wonderful Thanksgiving. My brother, Paul (who is technically my brother-in-law but is my brother in my heart), came over from his home in northeast Louisiana on Wednesday afternoon and spent Thursday with us. He had to leave early on Friday for a family reunion near Bryan, TX, but I was so happy to see him and get to spend some quality time with him! Of course, we all missed my sister Ann, who died in October 2006. We were also lucky enough to have my friend and colleague from work, Rafia, come over to join us for a completely nontraditional Thanksgiving meal of grilled New York strips, cheesy potato casserole, squash, green salad, asparagus with garlic/lemon sauce, and for dessert, homemade chocolate ice cream. Rafia brought her Wii, and we played lots of games after dinner, and I laughed until my stomach hurt. A good kind of hurt, though :).

I hope you are well, warm, safe, and happy. Peace, Jody.

Side Effects Circus!

My last update was almost a week ago, on a Sunday. That Monday, I was still feeling pretty bad, so I stayed home, but I did manage to work most of the day. Part of my job is to maintain and update all the webpage subject guides that I am responsible for, and there is always something that needs to be done to them, so I spent most of the day working on them. You can peruse them here if you are interested.

So I've heard some people describe this blog as "gutsy" and "honest." I guess that's a good thing? I'm going to warn you now that I'm going to honestly and openly describe some very icky stuff in this post having to do with side effects. I decided to talk about these issues (even though some are very private) not necessarily because I want everyone I know to know about them, but because maybe someone whom I don't know is reading this blog and is going through the same things I am and will not feel so alone. Or perhaps someone getting ready to start chemo will be more prepared for what might happen. If you don't want to know about these issues, you may want to skip the rest of this post.

I went back to work on Tuesday, still feeling very fatigued and just kind of not well. At least by this point, the extreme body aches/soreness had abated. At its worst, this side effect felt like someone had beaten me about the body with a baseball bat, more than just muscle soreness, sort of a very bruised feeling, mostly throughout my torso and up into my neck. When I went in for my weekly lab work this past Thursday (my counts were very good, btw), I asked the Good Nurse Sue about this problem since it was new for me. She said it is not an uncommon side effect of chemo; she also said it could have been that my white counts dipped really low very early and the Neulasta kicked in at that point (this drug has the common side effect of causing bone aches when it starts working because it stimulates one's bone marrow to produce white blood cells). Since the soreness was centered so heavily between my ribs and hips, I was concerned that I might be experiencing liver problems (obviously, one's liver is heavily stressed by chemo), and I asked Sue about that. She responded that they do not test for liver function during the normal weekly lab work (which is just a simple CBC), but they do perform a complete panel that looks at liver function with the lab work that is done just before one gets a chemo treatment. So if there were any problems with my liver, they would have shown up Thursday a week ago before I got my chemo. And they didn't. Whew.

At the point that I started to feel systemically human again, which was around Monday or Tuesday, I started to get other side effects that were local. Sadly, the bleeding and extreme pain during bowel movements came back. Also, the skin in my private parts (front to back) became very inflamed and painful and was sort of oozing/weeping a small amount of blood pretty much all the time. This started on Monday and was very bad for the next two days. It had started to get very slightly better by Thursday, but I made sure to tell Sue about it when I was in for my lab work. She immediately told me to drop drawers so she could have a look (an aside: you know you're not exaggerating your own systems when an experienced oncology nurse has a sharp intake of breath upon seeing a problem, which was the Good Nurse Sue's reaction). She said it looked like a fungal infection and told me she would give me a prescription for a cream that would help. She also prescribed a suppository containing steroids for the internal problem(s). The external cream gave me almost immediate relief; the redness is still there, but the bleeding has stopped, and it's not nearly as painful. The internal problem is a bit better, but not much. I'm hoping that it's just an issue with this type of medication taking longer to help. From what I've gathered on the Internet, this type of fungal infection is not uncommon in people with compromised immune systems:

The most common organism implicated in fungal infections is the ubiquitous Candida, which is found in the human digestive tract, mouth, and genital region (Eggiman P et al 2003). Under normal circumstances, levels of Candida are controlled by beneficial bacteria. However, if the bacteria-fungus balance is upset, by the use of antibiotics for example, or if the immune system is compromised, an overgrowth of Candida can occur, resulting in infection (Braunwald DE 2001).

The other problem I've been having is a very painful feeling that food is getting caught at a point in my esophagus that's in the middle of my chest area. It's especially bad when I eat anything dense, such as bread or red meat. This is actually a problem that I've had for years, but it's been really exacerbated since I've been on chemo. I told Sue about this issue as well, and she gave me a prescription for a heartburn/antacid medication. I've been taking it since Thursday, and it's really helped.

So those who talk about very unpleasant chemotherapy side effects from mouth to anus are not in the least exaggerating, I can now attest. I got some more information here:

Mucositis (also known as stomatitis) is the swelling, irritation, and ulceration of the cells that line the digestive tract. These cells reproduce rapidly and have a shorter life span than other cells in the body. Because chemotherapy agents do not differentiate between healthy cells and cancer cells, they can quickly destroy digestive tract cells, breaking down the protective lining and leaving them inflamed, irritated, and swollen. Mucositis can occur anywhere along the digestive tract from the mouth to the anus, and can be aggravated by nausea and vomiting.

I hope this information hasn't been too disturbing for you to read. It's difficult for many people to talk about and deal with honestly, so that's all I'm trying to do.

Other than dealing with all these side effects, it's been a pretty good week. I enjoyed being back at work and feeling productive. Sadly, one of my colleagues has been out sick all week and will be out next week as well (Get Well, Anne!), so I've been doing a lot of extra shifts on the reference desk, and enjoying them all. We are very, very busy right now; so many students have research papers due now before the big bang that is final exams. I haven't felt like being on Warcraft at all, which I am missing, but maybe this evening I will get a some time to play and actually feel well enough to be on (I find that when I'm even slightly nauseated, the game can make that feeling much worse; it must have to do with its immersiveness and the motion on the screen).

I hope you are well, loved, warm, and happy. Peace, Jody

Second to Last of the Big-Bad

Wow, have I been a slacker! It's been just over two weeks since I last posted here. I know that most of you keep up with me through my Facebook status updates, so you aren't too much in the dark. For those not on Facebook, SHAME :)!

I am so SO proud of my coworker and friend, Kathleen. She and her cousin Denise successfully walked the whole 60 miles for the Komen 3-Day last weekend. The bottom picture here is of the two of them (Kathleen is on the left). They said it went fairly well, and they weren't even really very sore. Kathleen got one little blister and that was pretty much it. She and all of the walkers in this event and others are true heroes! The other heroes are those of you who pledged money for Kathleen's efforts. I thank you one and all.

I continue to receive extraordinary amounts of care and kindness from friends and coworkers and family. Two of the librarians in my group, Helen and Carol, like to sew and told me that if I would go pick out some fabrics, they would make head scarves for me. Helen brought hers in last week, and I must say that she went way above and beyond (just volunteering to do this was way above, etc.). One of the pieces of fabric that I bought was cut too crookedly for her to work with, so she took it back to the store and got three more pieces. All of the scarves are beautiful, and it's so nice to have a bigger selection!

More random acts of kindness: The head of access services at my library, Sue Sappington, brought me a lovely package -- some foot cream and lip balm and snuggly footies, as well as lots of information from the ACS. And Kyle's Aunt Arlene sent me the newest John Irving book; it was so thoughtful of her to remember that he is one of my favorite authors.

My health and well-being have been up and down since I last posted, of course. I had the usual problems with mouth sores, except this time I had five big ones instead of just two. Just at the point that they were getting really bad, the Neulasta kicked in, and they went away almost overnight. The other problem I had was new and freaked me out quite a bit: lots of bleeding during bowel movements (well, it seemed like lots to me). Of course, the first time this happened was on a weekend, and I didn't really want to disturb the doctor on call, but I wasn't warned that this was a normal side effect, and when I looked it up on the Internet, every credible source I found advised calling the doctor immediately, so I did. The doc on call asked me some questions to rule out anything really serious and concluded that it was just the mucus membranes there were irritated, like the skin inside my mouth. He said to call and speak with my regular nurse the next day, which I did, and the Good Nurse Sue came to the same conclusion. When the Neulasta turned itself on a few days later, the bleeding stopped.

So I had about 4 days at the end of my last cycle during which I was feeling pretty damn good -- not too tired, no mouth sores, no nausea, etc. It was wonderful!

Last time I wrote, I said that my protocol would change as follows: see Dr. Krekow on Tuesday, have chemo admin on Thursday with no Emend, and then go back on Friday for the Neulasta injection and IV steroids, antinausea drugs, and Ativan. That is pretty much how things went this week with one exception: Dr. Krekow did keep me on the Emend. When I saw her on Tuesday, she explained to me that she has five (maybe six?) families of drugs that she can use to combat CINV (chemotherapy-induced nausea and vomiting). I will try to list a representative example of them all: Ativan (anti-anxiety that also controls nausea), Phenergan (antinausea that blocks signals from the stomach to the brain), Emend (antinausea that blocks signals from the brain to the stomach), steroids (antinausea), and . . . hmm, I have forgotten the others. Chemo brain.

I had to teach a class Thursday morning, but the timing worked out perfectly; the class was from 9:30-10:50, and I had to be at the oncologist's office at 11:45 for chemo admin. Kyle came to work with me and sat in on my class. The only thing he said about it was how surprised he was that these students were taking a senior-level class, yet many of them had never used the library's databases to do research. It didn't surprise me; I see it all the time. Studies have shown that 80% of all college students (not just freshman) turn first to Google when given a research assignment. While Google does wonderful things, it most often cannot get you to the full text of scholarly articles. But I digress.

Kyle dropped me off for my treatment, and he went to get some lunch for himself. After he ate, he stopped at a great deli and got a sandwich and chips for me, which I ate while getting treatment. We headed home around 2:30 and both crashed from 3:00 to 7:00 or so. Kyle got up and made a pot of delicious chicken soup (yes, from scratch), and we had that for dinner. We went back the next day for the Neulasta and more IV meds. I told Kyle he didn't have to hang around while I was getting my treatment. It's so boring for him, and the chairs for visitors are uncomfortable. So he toodled around and happened to find the Harley dealership. When he came back, he had a present for me -- a really cool, black, knitted skull cap with little rhinestones all over it. I'd been wanting a hat like this, and he knew it. How thoughtful is he??!

Yesterday, I woke up with a bit of nausea, but I was able to eat a banana and some yogurt. A couple of hours later, I was feeling very nauseated but I thought if I ate, it might help. So I had a couple of scrambled eggs and some toast. Still felt bad. At that point, I was like, screw this, I'm going to take whatever I can that will help. So I took a Phenergan and an Ativan -- this on top of the Emend I took when I woke up. Within 15 minutes, I was about to pass out -- I couldn't even see straight. I had laundered the bed sheets that morning but hadn't yet made the bed, so I asked Kyle to do it. I don't think I could have gotten the sheets on that bed if I had tried. I collapsed in the bed as soon as it was made and slept from 2:30 until 7:30. I felt a lot better when I woke up and had a dinner of chicken soup, toast with hummus, and a salad. We watched Buffy all evening and I took another Phenergan/Ativan combo before going to bed; slept from around midnight until 10:30 this morning. When I woke up, I took another Phenergan. I have simply decided that I'd rather be drugged into a stupor than nauseated :).

My only real discomfort right now is that I am sore all over for some reason. Like I had a really intense workout at the gym in which I stressed every single muscle in my body. The only thing that I can figure is that this is a chemo side effect that I haven't yet, for whatever crazy reason, experienced, OR it's because I'm sleeping so much that I'm stiff. The problem with the latter theory is that the soreness doesn't go away after I've been up for several hours. But as I just told Kyle, the soreness doesn't bother me if I sit still, whereas the nausea is unrelenting when it's hanging around.

I have to say that I am really getting sick and tired of being sick and tired, so I am glad this is my third big-bad chemo treatment. Just one more like this, and then I start on the Taxol once a week for 12 weeks. Although it's still chemo, Taxol is supposed to be not nearly as difficult to deal with. The only common side effects are numbness in one's extremities, especially fingers and toes. I ran into a woman at the closing ceremonies for the Komen 3-Day who was just finishing her chemo, and she said that she lost a couple of toenails from the Taxol. Ugh. I hope I will be able to type; if I can't, I don't know how I will do my job. I guess I will deal with it if/when it happens. But I'm told that my hair should start growing again, and I won't have the nausea or mouth sores anymore.

That's about it for now. I hope you have a lovely Sunday and a wonderful week ahead. Peace, Jody.