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.