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.

Ann Beck Proofs Are Up!

The proofs from the session we did with Ann Beck are done. If you'd like to see them, go to http://www.annbeckphotography.com/, click on "enter website" then click on "proofs" and enter the password "jody". For those who might want to actually buy a print or two, you can do so right through the website. For the photo you like, just click on "add to cart" and follow the prompts.

My Confinement, Day 6

I'm beginning to think of this enforced inactivity in those terms: a confinement. Isn't that what women used to have to endure at the end of a pregnancy? Or was it every month when they had their period? I just associate that term with women being segregated from society for a length of time because of what people used to euphemistically term "female troubles" (though I've heard that phrase again since I've been back in the South).

I've been off the pain med and muscle relaxant now for about 36 hours. I'd been tapering down but decided I didn't really need them any more at all yesterday, so I didn't take any last night. I switched back to my usual OTC sleep med (as I believe I've mentioned here before, I have horrible insomnia) and slept fairly well, though it took me a good two hours to get fully asleep. One reason I wanted to get those meds out of my system was that they gave me the worst case of constipation I've ever had. My cousin Karen warned me about this, and she should know: She's had literally dozens of major surgeries as a result of a terrible car collision she miraculously survived in the late 1970s. She is now in the process of having one of her legs pretty much completely rebuilt with the goal that it will finally be the same length as her other leg and stop causing her to have so much back and neck pain. Anyway, she emailed me and warned me about this side effect of painkillers and advised me to ask for stool softeners at the hospital, and though I believed her, I didn't want to take a medication that I might not need, so I didn't ask for anything. Now I SO wish I had. I really had no idea what constipation felt like until a couple of days ago. Five days without a BM can definitely leave one feeling incredibly icky. I'll say that the problem is better now and leave it at that :).

My arm seems a bit less swollen and painful today, but it was still so bad yesterday that I paged my surgeon again. He seemed annoyed by my page, which frankly annoyed me, but of course I apologized profusely for bothering him. He said the only thing he could advise me to do was go to the ER, where they would likely do a CT scan of my arm to be sure there wasn't a blood clot. That seemed a bit extreme to me, so I decided to wait until today to try to get over to see him in person. Unfortunately, I forgot that a plumber is coming by to inspect the installation of our new hot water heater (I guess my landlady installed it; maybe the inspection by a professional is a city regulation?). We don't know what time the plumber is supposed to be here. All they would say is sometime today. So if I can't get over to see the surgeon today, we will just keep our appointment we had with him for tomorrow. He's not going to take the drain out, though. I asked him again what are the criteria for the removal of the drain, and he said less than 30cc of liquid total per day for three days in a row. I'm still empyting this thing every twelve hours and getting between 20cc and 30cc each time. My guess is that the earliest it will come out is the end of the week if I'm very, VERY lucky. But probably Monday :((((((.

So without the pain med to make me sleepy, I've been awake and alert during the day, which means more time to get bored. Yesterday I played WoW for a little while but my arm was hurting too much to be on the computer for very long, so I ended up watching TV. A lot of TV. We don't have cable or satellite service, so anything we watch has to be through our Apple TV or Netflix (disks or streaming via the Xbox 360). I had saved up several episodes of "Mad Men" and watched all of them, plus several more of "Freaks and Geeks." I like Mad Men a lot, but Kyle's not crazy about it -- he says Don Draper has no redeeming qualities, and he can't stand Peter Campbell. I feel the same way about some series that he likes (in particular, Battlestar Galactica -- not a single character worth caring about on that one), but no biggie. So I watched TV by myself for quite a while because Kyle was sleeping for a good part of the day. (He, sadly and unfortunately, picked up a bad cold somewhere. I pray I don't get it.) I love Freaks and Geeks, too; it reminds me so much of my high school days. I watched an episode last night in which the first mention of punk was made. It showed Nick getting ready to go to a punk club and ripping up his clothes, putting safety pins everywhere, lol. Oh, how well I could relate to and remember that. There was one time Kim Hill and I were going somewhere, I don't remember where -- a party, maybe? -- and we spiked our hair, did new-wave/punk makeup, and wore black plastic trash bags as tops.

I guess I'm going to fire up my work laptop and see whether I can get the VPN client running so that it will work just as if I'm there. If so, I'm going to try to get some work done. There's really no reason not to. I think I can log at least half a day's worth of hours today. I should probably call Suzanne and make sure that's OK, or at least tell her that's what I'm doing. Perhaps she'll have something in particular that she wants me to work on.

I just looked back over the blog and realized that I hadn't summarized what Dr. Brian told me the day after surgery. I guess my head's been too foggy. She said that after they removed the sentinel node and found that it was positive, they removed a bunch more (22 total, I believe) and found that five were affected. She said that this will likely mean six months of chemo followed by four to six weeks of radiation, which is somewhat confusing to me since she had earlier said that it's rare to get radiation if one has a mastectomy (but my mom had both). I guess all will be explained by the oncologist, Dr. Krekow; I have an appointment with her on September 21. Frankly, I'm trying not to think too much about the chemo. It scares me.

A Quiet Weekend

I just woke up a little while ago. I haven't had too much trouble sleeping, which surprises me. Friday night and Saturday morning, I was letting myself sleep on either my right or left side since neither was painful, but then I woke up yesterday with my upper left arm swollen, so last night, I tried to stay just on my right side, which isn't easy. I rolled onto my back several times and tried sleeping like that, but it didn't work because (a) I hate to sleep on my back, and (b) that position made the whole surgical area and my arm throb. My arm is still swollen, which is freaking me out a bit, making me think that I already have lymphedema. I called the plastic surgeon and asked him about it, and he said it's probably just a reaction to the surgery that will subside and not lymphedema. But he did tell me to try to keep the arm elevated, which I am trying to do. But that means I can't be on the computer :(.

My pain levels are really low now. I haven't had any meds since about midnight, almost twelve hours, and I'd say I'm at a 1-2 for pain. The swelling in my arm is more bothersome and painful than the surgical area, in fact. So I think I will try to not take pain meds or muscle relaxants today, just the antibiotic and nausea med (and the latter only because I'm not sure whether it was the antibiotic making me sick on Friday).

I'd really like to try to wash my hair today. The last time I washed it was Wednesday just before my surgery, and it's really grossing me out. Kelly said we could try doing it in the kitchen sink, but the other option we thought about is out on our deck. We have a privacy fence, so no one could see, and it's not slippery, so I don't have to worry about falling. It's still so warm here that I don't think I'd get cold, even with no hot water. The cold water from the tap is so tepid as to be close to body temperature. So that will probably be the big project for the afternoon: Operation Hair Washing!

Yesterday was very quiet. I was on the computer most of the day, which probably wasn't great for my arm. My friend and coworker, Gretchen, came by with a mountain of food around 7:00. She brought mac and cheese, chicken salad, chicken noodle soup, and tortellini soup -- and LOTS of all of it! I think we'll need to freeze some; there's no way we'll be able to eat it all before it goes bad. What a sweetheart she is to do that, and from what she tells me, people at the library are lining up to be next to bring us food. And my long-distance friends, Alesia, Edie, and Frankie, want to hire a personal chef for us. Everyone really is being too kind.

I'm starting to get impatient to have this drain out, to the point that I'm counting the days/nights and really, really hoping that Dr. Heistein will take it out on Wednesday. It's bothersome on many counts: (a) it looks stupid under my shirt, (b) I can't bathe as long as it's in, and (c) the point at which it exits my body really itches, though it's one of those phantom itches that is happening at a site that's numb. I've never had such extensive numbness in my body before. It's pretty freaky. I'm afraid that if I scratch too hard, I'll hurt myself without knowing.

A bunch of the girls (Rafia, Erin, Gretchen, Barbi, others?) are having a BBQ at Erin's house today. They talked about doing it here, but I didn't think I'd be up for having a lot of people over for an extended period of time. I do think that I may feel up to going over there for a little while, however. Erin has a cat, so I won't be able to be in the house for any length of time (I'm deathly allergic), but as long as there's a shady spot outside, it should be pleasant. I just checked the weather, and the highs are supposed to be in the low 90s, not too bad.

That's about all that's going on here. Kind of a boring, mundane post, but I guess that's kind of nice for a change. Peace.

Jody

First Day at Home

Today was my first full day at home. I am surprised at how well I feel, quite frankly. Don't get me wrong -- I'm not up for a marathon or anything. But I was thinking that I might have trouble just walking by myself, and that hasn't been the case at all. If I'm in bed on my side, I just try to roll to the edge, swing my legs down, and sit up using my good arm to push me up so I don't have to use my chest muscles much, if at all. I'm still a bit woozy in the head and so am trying to walk slowly, but I really am not doing bad at all.

The only thing that's been unpleasant today is that I got really sick to my stomach right after I ate lunch. That was also after I took my last dose of pain meds and muscle relaxants, so we are thinking that it's likely the pain med that's making me sick. I called my plastic surgeon's office (he is handling all my prescriptions) and since I'm already taking just about the only pain med I can take without going to an OTC pill, such as Tylenol, they decided to call in some anti-nausea meds. So I'm now on that, Phenergan, and so far it seems to be working.

I saw my incisions for the first time today. I must say that they look very weird, but they don't look as bad as I thought they would. Yesterday, Kyle said I looked like a Borg because I have a tube coming out of my rib cage, lol. I saw that for the first time today as well, and I have to agree with him. It's kind of cool looking! So I was proud of myself that I didn't cry or even get upset at all. I guess that part of my mind that needed to be reconciled to this reality is now on board with the plan.

Much of the upper part of my left arm and my left rib-cage area are numb; I was told to expect this, but it is rather weird. I get itches where I'm numb and I go to scratch, but I can't feel anything.

OK, typing this has tired me out, and my left arm is starting to feel funny, so I'll sign off for now. Peace out, Jody.

Post Op

I told Jody I would post here so that the people not on Facebook or the people that haven't heard the news yet could.

Jody made it through the mastectomy surgery fine. When the surgeon came to speak with me I had a feeling that there may have been some unusual circumstances because it had taken longer than I expected. She told me that the sentinel node had been positive when they sent it off for biopsy and because of that, the surgery took longer. What this means is that she removed additional lymph nodes in addition to the sentinel node. This is not the news we were hoping for. Ultimately it will depend on what we find in the pathology report tomorrow or Friday that will determine if she needs to have chemotherapy and possibly radiation therapy. At this point one round of chemo is almost a guarantee.

The second surgery being the reconstructive went along swimmingly and there were no surprises. So at least that went fine. She is currently sleeping and getting stronger by the hour. Most of her day was spent pretty drugged and sleepy from the pain meds, and when she was lucid she would try to eat or drink, but not too successfully. They switched her off of morphine in hopes of alleviating the nausea. Only time will tell if she can successfully keep her breakfast down. I'm sure tomorrow she will be feeling better than today and we'll determine if she can come home or stay another day/night in the hospital. All of your feedback to her via email, Facebook and such is getting relayed to her by me as time permits and is much appreciated. Thanks everyone for your support and kind words. I know it means a lot to her and myself and just knowing that you all are out there pulling for her will help her gather strength to get through this. Goodnight.