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.

Devil's Night

Devil's Night is what they call Halloween Eve in Detroit. The devilry used to get pretty bad up there, to the point that people died from random violence or fires. It never was that bad when we were there, mostly just mischief.

We had a fun gathering at work today, a brunch potluck that my program area hosted. Technically it wasn't a Halloween party, but several of my coworkers came in costume. Suzanne was a rapper/playa, Rafia was Dr. Horrible (with a lab coat that said "She blinded me with library science" on the back, ha!), and Eric was BJ Honeycutt from M*A*S*H* (bloody apron and martini included).

I had my usual lab work done today. And drumroll, please! Here are the numbers:

WBC: 4.2

NE#: 2.9

RBC: 3.73
HGB: 12.2

Everything's fairly low but still acceptable. I again spoke with Sue. OK, let me back up.

My last blog post ended on a fairly positive note; I wrote it on the Sunday after my last chemo treatment, and I wasn't feeling bad. Not great by any means, but not bad. I got up on Monday and had no more Emend, so took my Zofran. Felt worse and worse as the day wore on. I had to go in for a Neulasta injection and told Sue how bad I was feeling. She said to use the HAB cream even if I wasn't vomiting since the nausea was becoming really, really bad. I tried it when I got home and felt a bit better, but it didn't last. The nausea just came screaming back that night; it was with me most of Tuesday, too. I had to teach a class that evening and just felt like I was babbling. Came home and could not eat more than a bit of salad. I woke Wednesday and took my meds as I should have all day (I missed my second dose on Tuesday) and felt a bit better. Finally, by Thursday (yesterday), I was able to go the day without any nausea meds and without feeling nauseated. Whew.

I can't really describe the nausea, except to say that it feels unrelenting; it was almost intolerable by Monday evening. My teeth and jaw hurt from clenching so much, which I guess is a normal reaction for me. I tried some deep breathing exercises but they didn't help. And everything, EVERYTHING smelled awful, which I'm sure didn't help.

So that was my week, and I talked to Sue about it today. I asked her whether it was the Emend that really didn't work the way it should (even though it controlled the vomiting) or whether it was just bad because it was my second round, and the chemo drugs are building up. She said that she thought that the Emend just didn't do the trick. So we are trying yet another protocol. For my next treatment, I will go in on a Tuesday to see Dr. Krekow and get my labwork done (because that was the only day she could squeeze me in with the doc), and then I will go back on Thursday for my chemo treatment, which will be exactly as it has been except no Emend. Then the next day, which would have been my chemo day, I will go in for the Neulasta injection and they will put me on IV antinausea meds again -- the same stuff I normally get right before my chemo. So I will have IV antinausea meds both Thursday and Friday this time. We shall see how it works out . . . .

OK, so that's about all the news I have for now. I hope you have a fun, wacky, cool Halloween! Peace, Jody

Chemo: Round 2

I had my second dose of chemotherapy on Friday, October 23. Before I actually got the chemo, I met with Dr. Krekow's physician's assistant (PA), Lisa. (This is the same person who did the genetic counseling with me before they did the genetic testing.) She spent some time asking me about all the problems I had had with the first dose, and I went over them in detail with her. The one thing I forgot to tell her about was the emotional low that I hit at the end of week 2. I will ask Dr. Krekow about that next time if it happens again (Lisa and Dr. Krekow alternate seeing patients on chemo days). Lisa told me that we were going to stick with our plan of taking the Emend, and she asked me if I wanted the HAB topical cream as well, and I said yes, since I was skeptical that the Emend would actually work. She also told me that because my WBC got so low last round and the mucositis was so bad, they are going to give me an injection of Neulasta, a medication that stimulates the bone marrow to produce white blood cells at that critical point when counts start getting very low. Neulasta's website is crap -- they don't explain how the drug actually works. Here is a better explanation I found:

Chemotherapy often decreases the bone marrow's ability to produce neutrophils, a certain type of white blood cell (WBC). Neutrophils help protect the body from infection, and having a low neutrophil count (known medically as neutropenia) increases the risk of infection. Neulasta belongs to a group of medications called granulocyte colony-stimulating factors. Colony-stimulating factors bind to stem cells in the bone marrow, stimulating the production of blood cells. Granulocyte colony-stimulating factor (G-CSF) is a naturally occurring chemical in the body that stimulates the production of neutrophils. Neulasta is a synthetic version of G-CSF attached to another molecule designed to make it stay in the body longer. This means that it needs to be injected only once per chemotherapy cycle. Neulasta binds to stem cells and stimulates the production of neutrophils, helping to decrease the risk of infection. (from here)

So I will get this injection tomorrow, and hopefully it will prevent the neutropenia (low neutrophil count) that I had last time, which caused the mucositis.

Here are my counts from Friday:

WBC: 5.2

RBC: 4.32

HGB: 14.0

The report they gave me was different from earlier ones and did not have the neutrophil count; it does have something called "Seg %" that's listed as being 40, and I think the nurse who was administering my chemo said that was the most important number, and it was good. My RBC is still a bit low, but everything else looked fine.

So I went to the pharmacy that they have on site to pick up the Emend. It came in a bubble pack with three pills, and the cost was $385, but for some reason I had $0 copay. Perhaps it's considered part of my chemo regimen and thus no copay? I don't know, but I was happy not to have to pay anything for it. I took my first pill after sitting down to wait for the chemo, which was somewhat delayed because the lab was backed up and my bloodwork results were not ready. Kyle went to get the HAB topical cream prescription filled; he also had some lunch.

I ate lunch when we got home and then took a nap for a couple of hours. I was still feeling queasy, very much so, in fact, but did not actually get sick. I asked Kyle to get out our juice extractor that we had never unpacked and make me some carrot/apple juice. I drank that for dinner and we watched several Buffy episodes.

Yesterday, I slept late and still felt queasy when I woke up. I took my second Emend pill, and felt better after a bit. I asked Kyle to make some scrambled eggs and toast for me. I had that with a yogurt and again, was NOT SICK! At this point, I was beginning to believe that the Emend was going to work. The true test came last night. We had pork chops, mashed potatoes, and broccoli for dinner. I got pretty queasy with the cooking smells and was afraid I wouldn't be able to eat, but once I had the plate in front of me, I started eating and it tasted pretty good, so I was able to finish all of it. Yay! We watched more Buffy and I went to bed about midnight and slept until 11:00 this morning. I took my third Emend and made myself some scrambled eggs and toast and am feeling pretty good now.

Let's see, what else has happened since I last posted? Oh, the mucositis did start to improve by Monday. The sores were still there, but not as severe, and by Friday, I was able to eat a pizza and salad. Woot! On Thursday afternoon, I saw Dr. Heistein, who took a look at my tissue expander, comparing it to my natural breast, and said that I would need at least one more fill. I talked with him about what I wanted for an eventual outcome and said offhandedly that we had lots of time to figure all this out. And he said, "Well, we have to be done before you start radiation. You can't have any more fills after that. AND radiation will affect your tissue expander in that it will cause it to shrink somewhat, how much we don't know." I didn't know any of this. I probably was told before and had forgotten, but Kyle said he didn't remember hearing this before now either. So I got another 60 cc's that day. Boy, was that a mistake. Dr. Heistein asked whether I wanted 60 or 30, and I opted for 60 with the hope that I could reduce the number of times I have to drive over to Fort Worth again. BIG mistake. I was in so much goddamned pain that night. I took three muscle relaxers, and they barely touched it. I was in more pain than the day after my surgery. I'd put it at an 8/10 on the pain scale. I barely slept that night and so was very tired when we went in for chemo the next day. I was having an extremely hard time moving because it was very unpredictable which movements would cause a spasm in my extremely overstretched chest wall muscles. I am still very, VERY sore, but doing better. Dr. Heistein wants to see me again in two weeks; he's thinking another 30 cc's will be enough, but I'm not sure. I'm thinking I'd like to get an implant on the right side, just to lift that breast a bit so that they won't be so lopsided (the reconstructed breast will sit much higher than my natural breast). Dr. Heistein says that the minimum size implant I can get is 100 cc's, so the tissue expander must be 100 cc's larger than my natural breast is now, and I don't think we are at that point yet. Anyway, all this must be done and settled by the time I start radiation, so we do still have about 9 weeks yet. What is most definitely decided in my mind is that I WILL NOT BE GETTING ANY MORE 60-cc FILLS! At most, 30 cc's from now on.

That's about it for this week. So, as usual . . . . Peace, Jody.

My Lap Quilt and My Shorn Head

As promised, pictures of the gorgeous quilt. And for the curious who aren't on Facebook, pictures of me with my head shaved.

A Bunch of Complaining + Presents

It's looking like Friday nights are becoming my regular time to post. I remember when Friday nights were my regular time to party. Good lord, what a depressing thought.

I was curious to see what my numbers were today compared with last week because I've been feeling very run down. Not necessarily run down as in tired or sleepy all the time, just kind of blah. Not much energy or enthusiasm for anything. I've also been very emotional, crying at the drop of a hat, which I assume is due to my general run-down-ed-ness? If you've been on chemo before, let me know if you had that reaction.

So just so we can compare, here were my numbers from last week:

WBC: 3.5 (low but still OK)

NE #: 2.3 (I'm not sure what this is, but Sue said 1.5 or more is good)

RBC: 3.98

HGB: 12.9 (less than 10 is bad)

And here is this week:

WBC: 2.7

NE #: 0.5

RBC: 4.19

HGB: 13.4

No wonder I feel like shit. And I found out what the "NE" is: neutrophils, evidently a special type of white blood cell that make up "an essential part of the innate immune system" that I have almost none of at the moment. And some asshole at the oncologist's office was coughing in front of me in the waiting room just outside where they draw blood. A very tiny waiting room. And he was a visitor, not a patient. What a fucktard. (This is the point in the blog where I'm likely to lose those who are offended by the F word -- sorry, but I said from the beginning that I will write how I feel, and that is how I feel about that man.) Anyway, the good nurse Sue said that I am about where they expect me to be and not yet in need of antibiotics or other boosters.

Sue and I spent some time talking about my latest side effect: mouth sores. I don't know exactly when these started but I think it's been at least a week. I have one on my tongue, right at the tip, and one way back on the roof of my mouth. They were just slightly annoying at first but have gotten progressively worse over the past few days to the point that I called Sue on Wednesday and asked her what we could do. She called in a prescription for a liquid that I can swish in my mouth; it's composed of equal parts of lidocaine, antacid, and Benadryl. It helps, but only for a short time while my mouth stays numb. I'm finding it harder and harder to eat and swallow -- the sore on my tongue makes it painful for me to move the food around in my mouth as I chew, and the one on the roof of my mouth has inflamed that whole area, making swallowing painful. I've been eating soft foods for two days now, and that helps, too. Sue gave me some other suggestions today, all OTC and/or homeopathic remedies. She said if I haven't seen any improvement by Monday to call her and she will ask Dr. Krekow if there's anything else we can try.

I also asked her about the new antinausea med I will be on next week; it's called Emend. There's a very informative video at that link that explains what it is and how it works, but if you don't want to watch it, here's what they say about how it works:

How is EMEND different? Most drugs designed to prevent chemotherapy-induced nausea and vomiting (CINV) block the nausea signals from your stomach. But chemotherapy can affect both the stomach and the brain. So even when the stomach's response to chemotherapy is blocked by medication, the brain's nausea signals can still make a patient feel sick or vomit.That's where EMEND can help.EMEND blocks the vomiting signals from the brain, rather than the signals from the stomach. So when EMEND is used with other drugs that block the stomach's nausea and vomiting signals, you can get more complete protection against nausea and vomiting.

I will start on this drug as soon as my butt hits the recliner in the chemo room next Friday; because it takes about an hour for them to administer the premeds and an hour before chemo is what Emend needs to do its thing, it should work out. I will stay on Emend all weekend, with it working in conjunction with the long-acting antinausea meds I get via my port, and then I will switch to Zofran or Phenergan as needed. Sue has also gotten approval for me to get that topical cream (Haldol/Benadryl/Ativan mix) that I mentioned last week. So I'm really hoping that with all this, I won't have a weekend full of vomiting like I did last time.

I still have my hair, but not for long. It's really starting to come out. I find myself dreading the shaving bit, but it's getting depressing to touch my hair and see/feel it come out. For example, today I grabbed a lock of hair that was hanging in my face and bugging me, just meaning to push it back, and it all came out. And I didn't really pull it at all. I think I just need to bite the bullet and go ahead and shave it tomorrow. It will be hard at first, but not so upsetting in the long run, I think. Maybe.

I got another fill in my tissue expander today. I asked the nurse how many more I would need, and she said that would depend on me and how big I want to be. I asked her if Dr. Heistein was in (the nurses always do the fills), and she said no, so I made an appointment for next week when he will be in so I can ask his opinion. I really hope next week will be the last one. Right now I have the odd and not very pleasant sensation of having a compression plate on the left side of my chest, both front and back, as though someone's put squares of plywood there and is clamping them together. I suppose it's just because the muscles are so damned tight from being so stretched.

OK, I feel as though I've done enough complaining. I will end on a pleasant note. Yesterday was my day to get presents! Who knew? And what a surprise :). I had a call from my colleague at the library, Lea, who works in Special Collections and who is also a breast cancer survivor; she and a friend of hers had made a quilt for me. So I went up to get it and met her friend Elizabeth -- what a lovely lady! She's 80 years old, and I guess making quilts for cancer patients is something she enjoys because she and Lea also gave me a book: The Quiltmaker's Gift. It's a children's book about how much better it is to give than receive, and they inscribed it "Wrap yourself in friendship with this quilt. The Philosophical Paleontological Quilting Society. Elizabeth and Lea" (it seems they enjoy discussing those subjects while quilting; maybe I will get smarter just through using it??) I was incredibly touched. And the quilt is very beautiful; I will post a picture of it here soon. So if that weren't enough, I got home and saw two large shipping boxes in the living room. I asked Kyle what they were and he said he didn't know; they were for me. I opened them up and found a gorgeous, very large pink scarf with "LOVE" sort of embossed all over it and a beautiful pair of pink pajamas. The sweetest part was the note: "Jody--Hugs, Prayers, and Strength from Michigan! Jamie, Linda, Ann, Kathy, Deb Brasile, Mary Peteui, Pam P, Jackie, Lisa S, Mary B, Carol V, Pam M, Julie S. Love from all of us!" These are my sweet coworkers and friends from Williams-Sonoma where I worked for seven years. And now I'm crying. Again. I will send thank-you notes soon, but in the meantime, THANK YOU ALL for the generous, gorgeous, thoughtful gifts but mostly thank you for the love that is expressed in them. Peace, Jody.