Happy Holidays!

It has, obviously, been a while since I've posted here. My apologies again to those who aren't on Facebook and can't keep up with me that way. It's much easier to jot off a short status update there to let you know how I'm doing rather than sitting down to right a blog post, which usually requires at least a solid hour or two. But I've got some time now, so here goes.

My last chemo was on December 3. And I mean "last" in two senses: most recent and final, at least for the Big-Bad Trio (Cytoxan, Epirubicin, and 5-FU). Since I've started on this regimen, I've often thought the shortened name for the last drug is rather fitting, as these drugs Eff-U up in at least five different ways. Get it, get it?? Heh.

In the days leading up to Dec. 3, I was getting really upset. Like, crying a lot. Two nights in a row beforehand, I spent sobbing, and the day of, during my appointment with my oncologist's physician's assistant (PA), I started crying and couldn't stop. I cried during the administration of the drugs, and the sweet nurse was so concerned. I told her I was so unhappy and upset at having to go through this again, even though it was the last one. I took a picture of the Epirubicin before it was administered. It turns my stomach to even look at it; I guess I'm now conditioned like one of Pavlov's dogs, but there it is on the upper left. This drug is in the same family as a chemo drug that's been used for years on breast cancer patients: Adriamycin. They are commonly called "The Red Devil" among those who have come to know them intimately, as I have.

I don't really know why I was so upset with this round. I know part of it was dread. HUGE dread at feeling so sick again for a week or more. I think part of it was also estrogen starvation and resulting hormonal imbalances. My body is being forced into a premature menopause, and I'm not responding well, emotionally. My PA, Lisa, suggested that I try an antidepressant, so I'm now on that. In any case, once they got the drugs in me, I calmed down; nothing I could do then but ride it out.

And honestly, in many ways, this last round wasn't too terribly bad. I kept myself well dosed with Phenergan and Ativan (antinausea drugs that also have soporific and antianxiety properties), so I slept. A lot. Like 16-18 hours a day from Thursday (administration day) through Monday. I started to cut back on the drugs Monday and thought I had enough energy to work on Tuesday, so I went in but had to leave by 1:00 because I was so exhausted and really out of it cognitively. I stayed home Wednesday as well and finally by Thursday, a full week after administration, I felt strong enough to work a full day. So really, my worst side effects this time were the usual lack of appetite and everything tasting and smelling awful, along with extreme fatigue. Oh, and the usual constipation and resulting excruciating spells in the bathroom.

So I'm told that the worst is over, that what I'm now facing is much easier. And just to refresh your memory, that is another twelve weeks of chemotherapy but with only one drug: Taxol. Supposedly, this drug does not have near the nausea nor the fatigue associated with it. Most commonly, it causes numbness in one's extremities. I am hopeful that it will be easier, especially since I have to take this drug once per week rather than once every three weeks, as has been the case with the Big-Bad Trio. So I will be out every Friday for three months starting on January 8th -- and yes, that is another HUGE bonus I got from the Good Nurse Sue -- a whole month off! After the Taxol, I will have radiation every day for 6 weeks (with weekends off).

I have put off the tattoo since I have yet to find a local artist who specializes in traditional Asian blackwork, which is what I want. I will continue to look here in the DFW area and in Austin; hopefully I can find someone.

I had a really wonderful birthday last weekend. My in-laws sent me a beautiful necklace they got at the Detroit Institute of Arts, along with gift cards for Macy's, so I'm planning a big after-Christmas shopping spree when the deals are really good. We went out to dinner the evening of my birthday with a bunch of my friends from work and their spouses plus three of their kids. We had a great dinner with lots of fun conversation and then went back to our house for a beautiful and delicious cake that Kyle made. My single girlfriends with no kids stayed and chatted with us until close to midnight when we all realized it was a school night, so they headed on home.

I just realized last week that I have about 10 days off in a row during the holidays. Our official university holidays are Dec. 23-25 and Dec. 28-Jan. 1; these are not days I have to take as vacation, just holidays. The library will be open on several of these days, and folks have volunteered to be there as a skeleton crew. I did not volunteer because at the time (way back in August, I believe), I wasn't sure what my treatment schedule would be. So once I realized that I would have all this time off, I started thinking about what we could possibly do. It was too late to try to get to Michigan, and besides, we've spent most of the past 10 years of Christmases there. I really wanted to be here in Texas for our first Christmas in our new home. So I think what we may do (we're still trying to firm up plans) is drive over to Monroe on the 26th and spend a couple of days with my brother Paul and then head home for one night so we can drop our dog Lightning at the vet for boarding before driving down to Houston for a couple of days with my cousins there. If all goes according to plan, we will head back home on the 31st in time for a party that my friend Gretchen is having at her house that night.

I can't really think of much other news -- oh, except for the fact that my hair is just *barely* starting to grow back. It's really not even visible at this point, but I can feel peach fuzz over many parts of my scalp that were completely smooth. There are still a lot of smooth patches, though, as well. I'm hoping that it will continue to grow or at least stop falling out as I start the Taxol. My eyebrows and eyelashes are almost gone, and I have to say that I look pretty damn bad with no makeup and no hair, so if I can't even put mascara on, I'm going to be very unhappy. I was chatting about this with a woman at my oncologist's office (a breast cancer survivor who was in for a check-up, I think, since she had all her hair and brows and lashes), and she said that when her hair started to come back, her lashes never did really regrow as thick as they had been before. She heard about a product called Latisse that she recommended I get. It's a prescription drug that was originally being used with glaucoma patients, but the developers of the drug noticed that it had a wonderful side effect: noticeable thickening and lengthening of eyelashes. So now it is a prescription that I can probably get through my plastic surgeon, but I'm guessing I will have to pay out of pocket for it, and it's around $120. I will wait and see how my lashes come back in; if I feel I really need it, I guess that price isn't too terribly bad.

So that's it for now. I hope you have a wonderful holiday season, however you may celebrate it. One of my favorite days during this season is the winter solstice; only two more days, and the sun will start to return to us here in the northern hemisphere! We've had a few cold spells here in Texas, but it has mostly been a beautiful fall with days in the 60s and even some 70s. The sun still feels so close and warm here, even now, and I am so thankful for that. I'm also incredibly grateful to my friends, in-laws, cousins -- all who love me and who have shown such steadfast support for me. I, in turn, send my love to you and wish you joy, laughter, fun, and love during the holidays. Peace, Jody.

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.

End of Week One on Chemo

For those of you not on Facebook, I'm sorry to keep you waiting for an update. I was really REALLY weak on Sunday and Monday, but the nausea did subside slowly on Sunday. It slid into an uneasy queasiness on Monday, at which point I started trying to eat again. I'm sure a lot of the weakness was due to lack of nutrients; the rest was just sheer exhaustion from vomiting so much. I was feeling much better by Monday night and decided to work on Tuesday. I went in a bit late but stayed until my normal time and was able to work full days the rest of the week. Yay!!! I'm very happy to have the sick leave pool to fall back on, but I really do want to be at work as much as I can.

I said I worked full days -- that was except for today as well because I have to go in to Dr. Krekow's office every Friday for lab work. They did a CBC and I waited for the results. They didn't mean much to me, but Sue explained these numbers (I'll put them here for those who are truly curious; I also know at least two of my friends, maybe more, who read this blog are health care professionals):

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)

There was a lot more, but that was all I got an explanation for. I will make sure to get more info next week. Basically, Sue seemed happy and said that I didn't need any medication for now to boost my counts. I also talked to her about an article I found online about treating chemotherapy-induced nausea and vomiting (CINV) with a Haldol/Ativan/Benadryl cocktail, but instead of it being administered via suppository (which, frankly, is kind of icky but also the doc last weekend said it can cause irritation and infections), it was done via topical cream to the wrists. The article is here if you want to read it, or at least look at the abstract. I had faxed this article to Sue a few days ago, and she said she got it and had given it to their pharmacist to see what s/he thought. She also said that next time I have chemo, they are trying another oral antinausea med. I will take it on the day of the chemo before they start the drugs and continue it for 3-4 days; this med will be in place of Zofran (and I assume Phenergan). She said it's stronger than both. The on-call doc last weekend (whose name is actually Dr. Coyle, I learned today) said that Phenergan and Zofran were the strongest out there, so she either didn't know what she was talking about, or she was blowing smoke up my metaphoric skirt. I suspect the latter.

I also asked Sue about one particular minor but still very annoying side effect: my face is breaking out like crazy. I have had mild to moderately bad acne my whole life, but I had been doing really well since moving here; I think the climate just agreed much more with my skin. So I had stopped using my prescription topical meds (Differin, BenzaClin). She said to start using them again, which I had already done a few days ago, but she said there's not much to be done beyond that. She doesn't want to put me on oral antibiotics just for acne. I'm guessing she's afraid that I might build up an immunity to the antibiotic and then it might not work for something more serious.

The other thing I noticed in particular today is that my scalp was hurting a bit when I washed my hair this morning. Sue had told me that many people feel that way when their hair is getting ready to break off, so I'm assuming I won't have my hair for much longer. I can't remember whether I've said it here yet, so I'll say it now. I'm not putting up with any half-assed, super-thin, raggedy-looking bullshit for hair. When it starts to go, Kyle is shaving my head. I will likely wear bandanas, scarves, skull caps, or nothing if it's not too cold. Oh, and I have a cowboy hat that was my sister's! October is breast-cancer awareness month, so if I get stares from our students, I may just make them more "aware" :). I don't think I'm going to get a wig, but I might. I asked my friend Rafia (also librarian colleague and office neighbor) if she was good at tying head scarves; I thought she might be because she was raised Muslim and wore a head covering when she was younger. She said she had no talent with the head scarves at all, sadly, but she's going to ask her sisters if they know of good websites that have instructional videos for doing head scarves. If you know of any, please post link(s) here or on Facebook. Peace, Jody.

First Chemo, Part 2

Kyle was able to get my new prescription around 5:30, but when he got home with it, I noticed that it was not the cocktail I had mentioned to the on-call doctor on the phone but Phenergan -- in the same strength as the stuff I'd been taking orally, but in suppository form. I decided to go ahead and try it anyway.

The rest of the evening was pretty bad, lots of vomiting and nausea. I tried to read between bouts but was having a lot of trouble concentrating. I finally gave up around 10:00 and turned out my light. I must have been pretty exhausted from lack of food and all the vomiting because I went to sleep pretty quickly and slept until my alarm went off at 3:00 to remind me to take more meds, which I did. I couldn't get back to sleep right away and so read until 4:00 or so, then slept again until 9:30. I woke up this morning feeling better. I still have a bad headache but the nausea has greatly dissipated. I am REALLY hoping it lasts. Peace, Jody.

First Day of Chemo

Yesterday, Kyle and I went first to Dr. Heistein's office where I got my second fill in the tissue expander, 60cc's again. I asked them if they were planning on doing 6 more fills with that much, because that was the original plan, and Dr. Heistein said, "No, actually, 300." Hah! I told him my boob would be bigger than my body if they did that much. He said that he probably would do another 2-3 fills.

We got to the chemo place shortly thereafter, and when I went in to have my blood drawn, they asked me which arm to use (because, like all women who've had a mastectomy, I can't have blood drawn on that side). I was surprised because I thought they would draw blood from the port. Although no one at Dr. Krekow's actually ever told me this, I'd read that several times on the Internet. The phlebotomist said she'd get the nurse, so shortly thereafter, Sue showed up and explained that they don't like to use the port to draw blood for a couple of reasons: first, the port is more likely to wear out with weekly blood draws over 6+ months, and second, the port works better for putting stuff in than taking stuff out. So I said that was fine; I just wanted to understand what was going on, and the tech drew the blood from my arm.

We then went to the chemo room. It's a long room with a bunch of recliners in it; the chairs are pretty comfortable, but they don't have much in the way of accommodations for caregivers (in my case, Kyle), just a straight-backed, lightly padded chair that I could see my butt going to sleep in after about 20 minutes. So I asked one of the nurses if it would be OK for Kyle to lie down in a recliner if they weren't too busy, and she said it was. Thirty minutes later, he was snoring -- softly, thank goodness.

The nurse who was taking care of me was very nice; her name is Sheela, and she appears to be Indian or Pakistani. She asked me how I was doing, and I said "scared" (I started crying a bit shortly after I sat down, mainly because I so didn't want to be there and because I was so scared). She said she would explain everything, and she did. She first got the line going in my port and started some saline. I couldn't even feel the needle going in because I had put some numbing cream on my skin over the port about an hour earlier. We then had to wait for my lab results, which didn't take long (about 15 minutes for them to get a CBC; I don't know whether it will take longer next time because maybe they will look at more stuff?). She then gave me the three pre-meds: the very strong and long-acting antinausea med plus the steroid that makes it work better through one bag, and a shot of Ativan into my line. The Ativan made me feel fairly loopy pretty quickly. They offered me something to drink; they have lots of juices and sodas available, so I chose a Diet Coke, and the guy who was serving me (he seems to have sort of a room-manager-type of position there) told me that I could have one, but that it was dehydrating and I really need to drink non-caffeinated beverages when I get home. Sheela told me that once the pre-meds were in, they would give me the chemo drugs, but we may have to wait a few minutes for them to finish mixing them, which we did.

So my chemo is administered in two ways. The Epirubicin and 5-FU are "pushed" (injected slowly into my line); the Cytoxan is a drip. The Epirubicin is red, and it makes my urine reddish. We had to wait about two hours for the Cytoxan to finish, then we got some last-minute instructions from Sue along with an appointment card covering the next month, and headed out around 2:30 or 3. So all in all, it didn't take as long as I thought it would. The only thing that was really disappointing was finding out that they do not have Wi-Fi.

One thing we had talked to Sue about was the Zofran prescription; for some reason, the insurance company was requiring an extra authorization from the doctor's office. She said she would take care of it. I also gave her the huge stack of photocopies from my mom's medical history; she said, "Wow" at first, then said she'd take a look at it and make copies of stuff that might be relevant to me. I'll get that back from them next time I'm in.

When we got home, I had a late lunch of some leftover pasta with chicken and a light cream sauce plus an apple with peanut butter. I felt OK, mostly just a bit sleepy and headachy. I definitely was starting to experience things tasting strange and smelling bad (or at least different). I had a light dinner of some macaroni with a bit of leftover marinara sauce; I took the Zofran and Ativan before I ate dinner. And yes, the pharmacist was a huge pain in the ass; I called to be sure the prescription was ready around 4:30, and he was still saying it was denied; I called Sue, waited another half hour or so, and called the pharmacist again. He was all tetchy and like, "I told you your insurance isn't paying for this without extra authorization." I told him that my doctor's office said it was taken care of, he checked again and said, "Oh yes, it's been cleared but not for the 30 they prescribed. I can give you 10." I asked him to check and see if my insurance would let me get 20, and he didn't want to do that but finally did and said yes. Now I realize that pharmacists are busy people, but good lord, was this guy rude.

I was, at this point (7:30ish), feeling a bit queasy. We got on the game for a little while then watched an episode of Buffy. So around 9:30, I'm feeling very queasy and I end up losing all my dinner. Kyle put me to bed after that, and I tried to get to sleep but really didn't until around 2:00, I think. My alarm went off at 3:00 so that I could take more meds, and I decided to take a Phenergan this time in the hopes that it would help me sleep better. Around 4:00, I realized it wasn't helping. Around 4:30, I had to vomit again. I think I finally fell asleep after that and slept until around 10. I got up, took a Zofran, had a cup of tea and again lost my tea about an hour later. I looked at my instruction sheet, and it said to call if the meds weren't helping with nausea and vomiting, so I put in a call to the on-call doc. She returned my call promptly and I told her what meds I've been on. She said she wasn't sure what to do because I was already taking the strongest stuff they can prescribe. I told her that my anti-emesis instruction sheet said that a suppository of Haldol/Ativan/Benedryl could be prescribed; she was unfamiliar with this protocol, but said she would call it in. After checking on the Internet, I did find a couple of journal articles supporting this treatment for CINV -- a new term for me: chemotherapy-induced nausea and vomiting. (I was a bit freaked out after seeing that Haldol is an antipsychotic drug; I know what the other two are.) So, anyway, I am now waiting to call the pharmacy in another hour or so to see if it's ready. And feeling nauseated again. Peace, Jody.

A Vague Sense of Foreboding

Foreboding: an omen, prediction, or presentiment especially of coming evil (from http://www.merriam-webster.com/)

Much as I've tried to avoid it, it's been dogging me for several days. I have this feeling that something really bad is just around the corner. I hope it's just my subconscious dread of the chemotherapy that starts in less than two days.

I got all my hair cut off last Saturday, and I really like it. I go to Tiffany at Burt Grant Salon, and she does a great job (her prices are reasonable, too). She mentioned as she was getting started that the back was really curly; when she started cutting the front, I noticed the same thing. The last time I had my hair really short was in 2005 when we went on safari in Tanzania, and it had a bit of a wave, but now it's really curly. I don't have any pictures of me with this cut yet; I'll try to remember to get some soon -- before my hair starts to fall out, especially. I'll post them here and on Facebook once I have them.

This week at work has been good; I've enjoyed being back in the groove and seeing my friends every day. I've also been back on the desk this week, which has been fun. I really love working on the reference desk and interacting with the students. I spent some time this afternoon walking around to my departments and handing out cards and flyers in the hopes of stirring up some business (i.e., getting faculty to invite me to their classes so that I can teach their students how to use the library's resources when they need to do research; this is sort of the main point of my job).

My supervisor, Suzanne, worried and worked very hard to make sure that every single "i" was dotted and "t" crossed for my application for the sick leave pool that had to go to HR. It's very complicated, but what it mainly boils down to is that I've been approved by HR to use that time, so I don't have to worry about going on leave without pay, which would be highly problematic. And I'm down to right around 60 hours of time off left because of all the time I had to take after my surgery. I truly do thank my lucky stars that I work with such a supportive group of people and that the UT System has this safety net for people like me who have to fight a life-threatening illness.

I had to get my teeth cleaned before starting chemo because I was 6 months overdue for it; I had been scheduled to go in February, but we moved then, and I never got around to it. I finally bit the bullet, so to speak, and made an appointment to go see my cousin, Van -- a dentist who practices in Fort Worth. I had warned him several times about how phobic I am concerning dental work, and he and his staff did a really fabulous job! They were extremely supportive and friendly, and Van gave me lots of nitrous to make sure that I stayed fairly loopy throughout. I did have some decay under an old silver (amalgam) filling, so he drilled that out and put in a lovely inlay that matches my tooth. I'm so happy that's over :).

The other thing I've been thinking about a lot this week is my mother and the path she traveled with this illness. I finally received her complete history from her oncologist last Saturday, so I've been reading through much of it (the stack of photocopies is about 3 inches thick). What strikes me as odd, interesting, and rather scary is that she was also stage IIIA, with many other similarities to me (but also some differences). I had forgotten some details of her illness: how, when, and where it metastasized, mainly. The big thing that I had remembered was that it was in her spine, but she also had a spot on her face at one point that had to be surgically removed. And she had to have radiation there as well, which had a chance of causing blindness. I also ran across some notes that were rather chilling; one that read something like "Patient's daughter called; pt is in excruciating pain, 10+." I don't remember my mother or my sister ever telling me that she was in that much pain; I guess that is something else that they protected me from. Anyway, I'm going to take the stack of papers to chemotherapy with me on Friday and ask Sue what information there might be useful to Dr. Krekow and let her make copies of those parts.

So I'm trying to be calm and not frightened about Friday, but it's rather difficult. I have an appointment with Dr. Heistein to get another fill done in my tissue expander at 10 that morning, then I have to show up at the chemo place (which is upstairs from Dr. Brian's office) at 11. As I understand it, they will draw blood and do the labwork first, which will take about an hour. Then they will start with the drugs to combat the nausea, then the chemo. I'm not sure how long it will take all together, and I have no idea how I will feel that evening or weekend. I guess I will find out. If I don't feel up to letting you all know how I'm doing, I'll ask Kyle to do so. Peace, Jody.

Why Can't I Read??

I'm so bummed. I found out from Sue that what I wrote here in the blog and what I had in my head that Dr. Krekow had said about the regimen we decided on was totally wrong. This is what it will be:

Cytoxan + Epirubicin + 5-FU for 4 cycles (1 cycle given every three weeks) = 12 weeks total

followed by

Taxol for 12 cycles (1 cycle given every week) = 12 weeks total

for a total of 24 weeks or 6 months.

So this translates to more drugs, a more aggressive and therefore toxic regimen and thus more likely to lead to severe side effects, and a much longer regimen than I remembered.

I have no idea how I got this so wrong. She wrote everything down for us, and I'm pretty sure I had the sheet of paper she wrote on in front of me when I was writing the blog post with my description of the different regimens. What I wrote above is exactly what she wrote on the paper I have.

Not only do I feel like an idiot for insisting to Sue that Dr. Krekow wrote what I remembered and being totally wrong about that, I also now have to deal with the knowledge that my regimen is twice as long as I thought it was going to be.

Oh joy.

The Oncologist Is NOT the Boogey Man

In fact, Dr. Krekow is an extremely personable and quite beautiful woman, maybe about my age, probably a few years younger. I never thought she was going to be mean or anything, but I did have a bit of trepidation about my first visit with her -- mostly because I was scared of what she would say, not of her as a person or physician.

The first thing she did when she walked in the room was to ask me how I was holding up; she was very sympathetic and really listened to what I had to say. Mainly, I wanted her to know about my mother's history (the fact that the first round of Adriamycin she had nearly made her quit chemo; the fact that that same drug most likely caused her congestive heart failure; and the fact that her disease metastasized into her spine and major organs, if not actually causing her death, then causing her to pray for it). So I told her that I was physically feeling OK but that my emotional state was perhaps not so great since the surgery because the course of my illness seems to be following that of my mom. She then spent almost two hours talking to us -- educating us in lay terms as to what cancer is and how it works in the body and why the body cannot get rid of it by itself. She stressed that though my disease may seem similar to my mother's, each woman who gets cancer is unique, and each cancer is unique; no two people will react exactly the same way or have the same experiences. Though I knew all of this from my reading, it was good to hear her explain it, and I assume that Kyle probably got something out of it. She also explained the different chemo regimens that we could choose from. Here's what she laid out for us:

Regimen 1: Adriamycin + Cytoxan x 4 cycles (once every three weeks) followed by Taxol x 4 cycles (once a week) = 16 weeks total

Regimen 2: Taxotere + Adriamycin + Cytoxan x 6 cycles (once every three weeks) = 18 weeks total

Regimen 3: Cytoxan + Epirubicin x 4 cycles (once every three weeks) + concurrent weekly doses of 5-fluorouracil (5-FU) for 12 cycles (i.e., once per week) = 12 weeks total

She also mentioned that there is a clinical trial that I would be eligible for. The trial is randomized in the sense that I would not know until I was accepted which treatment arm I would be assigned to, but it is not blind or double-blind (i.e., once assigned to a group, I and those treating me would know which medications I would receive).

After hearing about my mother's experiences with Adriamycin, Dr. Krekow seemed a bit leery of putting me on it. She said that her original plan before talking to me was to recommend Regimen 2, but that she now was leaning toward Regimen 3 because Epirubicin, although very similar to Adriamycin in its cancer-cell-killing efficacy, seems a bit less likely to cause heart damage. She also seemed not too much in favor of the clinical trial because two of the treatment arms include Adriamycin in the regimen; she said if she could be sure that I would land in the treatment arm without the Adria, she would recommend it. Then she asked me what I wanted to do.

I don't know how you would react in a situation such as this, where you feel like your own decision may set you on a course where your life could be very short and full of pain and suffering or could be long and disease-free. It's not a pleasant place to be. The only thing I knew to do was to ask her what she would recommend, and she said that although all the regimens were state of the art, she would lean toward Regimen 3. So that is what we are doing. Nothing is written in stone; if the regimen needs to be changed or adjusted, it can be.

I have not yet met with Sue, who is the new Kelly (if you remember, Kelly is Dr. Brian's patient facilitator; Sue fills this role for Dr. Krekow). She will go over all the exact information about how the drugs will be administered and what other drugs I will be on to help control side effects. As I understand it, antinausea meds will be given to me along with the chemo through my port, but I think I will also have oral meds that I will have to take at home between chemo doses. I will have blood drawn every week so that they will know what my white counts are; I'm sure they look at other stuff too. After they do the bloodwork, I will have the 5-FU every week, so that will take at least half a day. Then I will also have the Epi and Cytoxan added to that routine once every three weeks. Though this regimen will be more time consuming in the short run, the total time for it is the shortest overall, so I don't think I will miss more work with this regimen than with the others. Sue and I are meeting tomorrow, so I will find out if all my surmises about how this is going to work are correct; after I meet with her, I will have an echocardiogram so that they will have a baseline for the condition of my heart before treatment.

The other thing I had done yesterday was the first fill of the tissue expander. Michelle at Dr. Heistein's office put in 60cc's of fluid, which seemed like A LOT. She had no trouble getting the needle into the valve (and it is a BIG-ASS NEEDLE), and I really couldn't feel it going in because of all the numbness I have, but I could see the tissue expander expanding. Right at the end it started to get a bit uncomfortable, but it wasn't bad at all. It only got bad last night. Not just my chest but across my back and down my arm felt so tight and sore that it woke me up at 3:30 and I couldn't get back to sleep. So I went to work today for the first time since the surgery and worked a full day on four hours of sleep. I called Michelle today and asked her whether it would be OK for me to take a muscle relaxant and a pain pill along with my OTC sleep med; she checked with the doc, who said it was fine. So that is the plan for tonight. Lord, I hope I will be able to sleep.

It was great being back at work today even though I was exhausted. Everyone was happy to see me, and I taught a class for one of my interdisciplinary studies professors whom I had not worked with before. I hope he was happy with the instruction. I don't think I did as good of a job as I normally do, but I don't think it was bad.

So there you have it. I don't yet know exactly what all the drugs do and why they work the way they do. I have a feeling that I will learn about and understand all this much better over the course of my treatment. If you choose to take the time to look them up, then more power to you :). I can only take in so much at one time, LOL. Peace, Jody.

Digital Copies of Three of My Fav Ann Beck Shots

Ann Beck, one of our awesome photographers, very kindly and generously sent me digital copies of three of the shots I liked best. So here they are!

Now I just have to figure out how to embed one of them in the header of this blog. Hmmm...

A Port in Any Storm

I got my port installed today. In one of my many wanderings on the Internet reading about all kinds of cancer stuff, I ran across a blog somewhere (I think it was by a physician) who wrote that the installation and removal of the port are milestones of sorts in the journey of people with cancer. (And yes, I do like that phrase better than "cancer patients"; it puts people before the disease and implies a more active role than "patient".) The port now marks me as someone in treatment, someone sick; when it's gone, I will, hopefully, be normal again. Or as normal as I ever was, lol. Anyway, for the truly curious or for those who just love looking at the latest in medical accessories, this link will take you to my port's manufacturer's webpage for the exact model I got.

The procedure was very fast. One of Dr. Brian's nurses told me that they only reason that they give a sedative is because the placement of the catheter in the vein is kind of delicate; it goes into my subclavian vein, just above my right lung, and they have to use X-ray to guide it in. She said that the patient must be absolutely still so that they don't damage anything getting that catheter in (the catheter feeds into the little central button on the port so that chemo meds can go in and blood can go out when they need to do labs on me). They wheeled me into the OR at 10:20, and I was still very alert at that point since the anesthesiologist had given me the "relaxing" med only a few minutes before. They asked me to transfer myself to another table, which I was able to do; after that, I remember absolutely nothing. I wonder whether I stayed awake and embarrassed myself by babbling for a few more minutes or whether I just went out like a light? I was in recovery and waking up by 11:00.

Kyle and I got home by 12:30 or so, had some lunch, and both napped. I slept until almost 4:00, fairly well, mostly, except that now it's hard to sleep on my right side, one of two comfortable positions I had left. I now have only the sleeping-on-my-back position, which I hate :(. Hopefully, the soreness from the port will go away very soon, so that I can again sleep on that side. And I really hope I can start sleeping on my left side soon; I have tried it most every night with no success. I fear it will be a very long time before I can sleep on my belly again, which was my favorite sleep mode.

I'm not feeling too many side effects from today, just a bit of soreness, fatigue, and headache. I think I will take a Darvocet soon. Peace, Jody.