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.

Short Update

I'm not going to write much today, beyond what I've already posted on Facebook; I just want to be sure that those who don't have a FB page know what's going on.

We saw Dr. Brian yesterday for the first time since my surgery. She was her usual, cheerful self. She gave my surgical site a brief look-see, said it looked just fine, and we discussed some of the after/side effects from the surgery. She is also convinced that the arm swelling/rash was a reaction to the preoperative surgical soap that was used on me, ChloraPrep, mainly because of the sharp delineation of the rash on my forearm. So I am adding that product to the list of medical stuff my body does not tolerate.

We discussed the question of when I could return to work and when I'm going to start chemo. We decided that this week would be a good time to go ahead and get the chemo port installed. I'd been dreading this for a while, because I thought I would have a port similar to the one my mother had, a Hickman catheter, which is both internal and external and which requires daily flushing and cleaning. I discovered, however, that I will have a completely internal port, similar (if not identical) to the one pictured here that is virtually maintenance free. This site has several high-quality photographs of what the port looks like and how chemotherapy is administered through it. So Dr. Brian will do the outpatient surgery tomorrow morning for the insertion of the port; she said that she does a vertical incision and makes every effort to position the incision so that the scar will eventually be hidden by a bra strap and thus not readily visible even if I am wearing a tank top or similarly revealing clothing. I think that this is very cool and am once again happy that I have a female surgeon because I doubt that most men would think about stuff like this. So because of the port installation, I will not be able to go back to work until next week (I was hoping to go back at the end of this week, but I guess it's better to get all this stuff done ASAP). I have an appointment with Dr. Heistein's office next Monday to have the first post-surgery filling of my tissue expander, and the same day, I will see Dr. Krekow (my oncologist) for the first time. (I've been trying to come up with a way to tell you how to pronounce her name, and the best I can do is that it rhymes with "BAKE-oh".) So hopefully I will be able to return to work on Tuesday of next week.

I got a copy of the pathology report from my surgery, and I have to say that it upset me quite a bit to read it. I'm not really sure why other than the fact that it doesn't sound positive (e.g., the size of the main tumor in my breast, the description of the tumor in the lymph nodes, the proximity of the tumor to my skin, etc.), and it's very difficult to read such a clinical description of the dissection and examination of a large, intimate part of one's body.

I finished reading the Breast Cancer Survival Manual, and I think it's a very good book. I found 99% of it to be comprehensible, and it all seems sensible. I highly recommend it and am now going to pass it on to Kyle; I hope he will read it. Since I'm now out of reading material, I just asked Kyle if we could go to the library this afternoon. Hopefully that will cheer me up a bit. Peace, Jody.

My Confinement, Day 10

Let's see, what has happened since Tuesday? Ah, well, Wednesday we saw Dr. Heistein. He said that the swelling and rash on my left arm were definitely an allergic reaction, not an infection. We have since seen a doc or nurse almost every day this week, all of whom have varying opinions. The source of the allergy is conjectured to be the antibiotic I was on (Keflex), the soap they used to wash my upper torso and arms in the OR, or the Ace bandage that was wrapped around my torso after surgery. I tend to think it was the former or the latter since the swelling started to abate as soon as I stopped taking the Keflex and took off the Ace bandage on Wednesday. My arm is still a bit itchy and scaly from the rash but is still SO much better than it was a week ago. Other than the discussion about my arm, Dr. Heistein said that everything looked normal at the surgical sites (I have two incisions: one from the mastectomy, about 5 inches long and straight across where the front of my breast was, the other from the lymph node removal, about 2 inches long at the base of my armpit). The tissue expander has already been slightly inflated, but it looks lopsided to me, more full toward the top and center of my chest than at the base. I'm sure it will even out.

We met my radiation-oncologist on Thursday, Dr. Janice Tomberlin. She and my oncologist, Dr. Lea Krekow (whom I will meet on 9/21), are both in the same practice as Dr. Brian, my breast surgeon. This was just an initial consult so that she could explain what will happen after chemo when she takes over my treatment for the radiation portion. In broad terms, chemo is a systemic therapy, meant to seek out and destroy any cancer cells that are left in my entire body after the surgery. She said that a 1-cm tumor has about 1 billion cancer cells, and my tumor was 5.5 cm. You can do the math, I'm sure. Though the surgeon makes every effort to get everything, there are microscopic cells that are bound to escape. We didn't get into exactly what sort of regimen I will be on for chemo, but she did say that I will have six treatments, one every three weeks, so a total of 4.5 months. I had assumed that I would get chemo weekly because that's how I've always heard it's done, so I was kind of relieved to hear that it won't be that frequent. It could be that this relief will be very short-lived, however. She said that the drugs will go in and one usually feels pretty good the first few days; their effect peaks at around 7-10 days, and that is when I will feel the worst and have the lowest white blood cell counts. I will go in weekly to have blood drawn so they can monitor all this, and they will give me a medication to help boost my white counts. I will start to feel better and just about back to normal by the time another treatment is due. Dr. Tomberlin gave me a book: "The Breast Cancer Survival Manual" by John Link, and she outlined there what my numbers are. Warning: they aren't very cheerful.

I am second to last on the tumor-size scale: greater than 5 cm gives me a score of T3.

I am last on the node status scale: involved nodes that are fixed to one another gives me a score of N2.

These two numbers combined give me a stage of IIIA.

The only good news in the numbers analysis that they have done is that my Bloom Richardson score is 3/9, or Grade 1, which is the lowest grade one can have, which is good. These numbers analyze how the cancer cells are shaped, what size they are, and how quickly they divide. Dr. Tomberlin says that many breast cancer specialists are now convinced that this score is more important in predicting the ultimate outcome (i.e., full recovery vs. death) than the stage.

Until I had my surgery, I wasn't all that terribly concerned about my survival. It had crossed my mind, and I had asked Dr. Brian about it, but I wasn't thinking about it all that much. Now I am. What keeps going through my mind is that everything we have discovered since my surgery is just like my mom's case, and she died. Granted she was 74 when diagnosed, and 79 when she died, and we don't think that what actually took her was the cancer; from all appearances, she had a stroke. However, the cancer had gotten bad enough that we (my mom, sister, and me) had made the decision for her to stop all treatments and call in hospice. The cancer had long before metastasized into her skeletal system (mainly spine, which caused her no end of pain) and had lately moved into her major internal organs (kidneys and liver, if I recall correctly). So I will be very curious to look at her medical history when I finally get it. (I don't know that I've mentioned here that I've been trying to get this information from her oncologist's office for over a month; they at first refused to give me the info b/c I don't have medical power-of-attorney over my mom. When I explained that my sister had that and that she died three years ago, they said I had to send them a notarized statement that I was my mother's only surviving immediate family member, etc. I did all this and they lost my first request; I recently sent a second request, which they said they've received, but they recently moved and have to figure out where my mother's records are stored among the 400 boxes of deceased patients' histories.) I'd very much like to see what her original tumor's grade was.

Anyway, after the chemo or systemic treatment, I will have the local treatment: radiation therapy, which is meant to kill any remaining cancer cells at the site of the original tumor and affected lymph nodes. They will specifically target the skin covering where my breast was. By that time, the tissue expander will be fully inflated, which she said will make it easier to target the skin they will want to get without hitting my lungs, ribs, etc. They will also target my lymph-node area. The side effects of radiation are fewer than chemo: mainly a sunburn-like reaction on the skin, but no hair loss, nausea, and less fatigue. She said that although they make every effort not to have my lungs or ribs affected, there is a chance that I can get a chronic cough and weakness in my lungs called Radiation Pneumonitis (which is treatable). It is also possible that my ribs will be permanently slightly weakened and more likely to break, but only in an extreme situation, such as a car accident. Radiation is given every weekday with weekends off to allow the skin to recover; I will have 25 treatments, so 5 weeks.

On Friday, we went back to Heistein's office to have my drain removed -- YAYYYY!!!! This thing had been getting on my nerves to the point of almost making me cry. (The other big problem I'd been having since Wednesday was extreme insomnia, and the drain was bugging me more than ever at night. I now blame the insomnia mainly on the Benedryl I'd been taking for the allergic reaction; yesterday I didn't take it at all, and I slept SO well last night.) Basically, the drain was a largish flexible tube coming out of my left side (almost back) rib cage, held in place with one suture. The tube was attached to a bulb about the size and shape of a very large lemon, which was attached by a safety pin to the front of the sports bra I've been wearing since my surgery. Inside my body, the tube came around the front, under where my breast was, up along my sternum, ending at the top inside point of my tissue expander (I think); the interior part of the tube has lots of little holes to catch the fluid, which would then drain out to the bulb, which I had to empty twice a day. So when the nurse took it out, she had to snip and remove the suture, which I didn't feel at all; then she told me to inhale deeply, and she pulled it out quickly as I exhaled. She warned me that it would sting and burn a bit, which it did, but mostly it just felt weird as this thing sort of snaked out of my chest. The biggest relief about not having that thing hanging off of me was (a) being able to sleep without it getting in my way, (b) not having it sticking out from under my clothing and looking weird to the point that it made me self-conscious to be in public, and (c) being able to SHOWER! It felt so good to be under running water for the first time in 10 days! I had been trying to keep clean as best I could with sponge baths, baby wipes, and having Kyle wash my hair on the deck, but nothing compares to being able to take a long, hot shower :). After my drain was out, I asked the nurse when I could drive again. She said to ask the doctor, but she did not recommend driving before next Wednesday. Evidently, with the drain out, I have to be more careful than ever not to overtax my system. If I do, fluid will build up in my chest and could cause problems.

Yesterday was Kyle's birthday. I wasn't able to do much for him, but I had asked Rafia (my friend and colleague from the library) to come by and take me to the store on Wednesday evening so that I could at least get him a card, if not a little gift. We went to Target and looked around and I finally decided on an Xbox 360 game that my friend Mike Abrahamson recommended when we called him to ask him his thoughts. After we left Heistein's office yesterday, Kyle decided he wanted to have brunch at Waffle House, so we stopped there on the way home. As we were ordering, I asked him if I could have some of his waffle and he said no; we were playfully arguing about this when he made the statement that it was his birthday and he was NOT going to share his waffle. So our waitress gets all excited, goes and plays the Waffle House birthday song on the jukebox (who knew there was such a song?), brings a Waffle House paper hat like the line cooks wear with "Happy Birthday" written on it, and puts it on Kyle's head. He turned beet red but also was smiling from ear to ear, so I took a picture of him that I put up on Facebook and Twitter. He got all kinds of calls from his family in the afternoon, and then we went out for dinner, too. I had a coupon for $20 off dinner at Blackfinn, kind of an upscale sports bar, so we decided to try that. It was meh. But cheap :). While there, a HUGE storm blew in; Kyle got absolutely soaked running out to the car, which he gallantly drove up to the restaurant entrance so I wouldn't get so wet. I was actually a bit concerned about getting home because there was so much water on the streets. We made it, though, and saw that poor Lightning had freaked out in his crate to the point that he had scooted it over to the door -- how I do not know since it sits on carpet and does not scoot easily -- where it remained wedged until we walked in (he has horrible storm phobia). We gave him two Xanax, and he calmed down fairly soon. We spent the evening watching "Dollhouse" on DVD, and as I said, I went to bed hopeful that I would finally get a decent night's sleep, which actually, blessedly did happen.

It's still raining today, and the temps are in the low 70s, so we have the windows open, and there's a lovely breeze blowing in. We don't have much planned for this weekend, and Monday we have an appointment with Dr. Brian. I'm hoping she will say I can go back to work later in the week. So that's about it for now -- except to once again thank so many of you who have sent cards and flowers (even though I asked you not to!). I so much appreciate your concern, love, and support, and I will as ever keep you posted here or through Facebook. Peace, Jody.