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.