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.