Countdown: 12 Days

Only 12 more days until reconstruction surgery. I'm losing weight and my therapist thinks it might be as a result of the adrenaline surging through my body. The closer I get, the more anxious I become.

I don't have any fear that the surgery won't go well. I chose M.D. Anderson because they 're experts at breast cancer and my plastic surgeon has performed this operation hundreds of times. I'm anxious because I don't wish to be hurt anymore. I'm tired of constantly being hurt in one way or another for the past year.

I start to think of it--the drains, the alcohol swabs, the pain--and it makes me terrified. I can't stand the smell of rubbing alcohol from my previous two surgeries (the surgical biopsy and mastectomy). They will make me eat chicken broth, which is another thing I hate from my last hospital stay.

The bed I was in the last time I was there was designed to prevent bed sores, I think. It periodially inflated itself in some places, especially if I changed position. The mattress would compensate by poofing up in some other area. It made a mechanical noise every time it moved and it used to wake me up every time.

I was sick for a couple of days after my mastectomy. Nurses would come in and tell me to drink water. Whenever I drank water and immediately threw up.

I try to console myself with the thought that I will have a new breast when it's all over. Pain trumps the thought of looking normal again. I don't want to do this, but I'm going to have to do it.

Breast Cancer Has Been Good to Me

"Every act of conscious learning requires the willingness to suffer an injury to one's self-esteem. That is why young children, before they are aware of their own self-importance, learn so easily." ~ Thomas Szasz

Even sugar couldn't help me yesterday. I was in a black mood all day. When I got home, I had a card from an old high school friend of mine. She included one of those holiday update letters that people seem to like to send. It sounds like things are going well for her and, though I'm certainly glad for her, it further damaged the day. It hasn't been a good year for me. That goes without saying. I don't have any business comparing myself to her or anyone else, though. Things are what they are.

I'm feeling better today. Nothing has changed, of course, but I'm not interested in questioning too much for fear of slipping down into the darkness again. I really hate that.

I've been thinking maybe I've lost some weight in the past couple of months. I never weigh myself. When I started working out regularly, I actually gained weight by adding muscle mass. I can always judge more accurately by how my clothes fit. I put on a pair of jeans this morning and they were a little loose, even though they were just washed. A month or so ago, I had trouble getting into them.

I'm never hungry anymore. I guess that's been going on since I finished up chemo. For a while, I chalked it up to radiation, but it's been five months since that was over. I know when my stomach is empty for too long, but I don't ever feel hungry. It makes it difficult to tell when I've eaten enough...or too much. After lunch, I didn't feel like eating the rest of the day. I made myself eat a tangerine around 6:00 p.m. because I definitely didn't get enough fruits or veggies earlier. That was all I had, though.

I generally end up feeling a little sick after I eat, so I'm really never particularly interested in food. I'm not sure why it makes me not feel well. My mom speculated this morning that maybe I've been worried about the upcoming surgery. (Surgery countdown: 17 days) I've definitely been anxious.

For a while now, I've been working hard to silence the little Fascist inside my head. It's some remnant of my childhood self that really marshaled all of my personal forces to successfully escape from the kind of life my parents had. I had tough expectations of myself. Any misstep was cause for severe self denigration. If I wasn't perfect, I was a terrible person.

The little girl in the brown shirt still thinks she needs to monitor my behavior. Not only does she punish for current imperfections, she also has a very long memory. I can still drift into "I'm a terrible person. I hate myself." very easily, even for things I did when I was 8.

However, every day now, I remind myself that I'm worthy of love. I'm worthy of the same level of kindness I extend to everyone else. When the little Fascist pops up, I'm more able now to stop the accusations.

It's a sad thing that I've only recently been consistently aware of that voice. For years, whenever my mind was unoccupied or whenever I wasn't completely pleased with my behavior, the haranguing began automatically. I'm hardly ever completely pleased with my behavior or, if the behavior is okay, my motivations are questionable. The nasty little voice was a constant companion.

At some point, I would notice that voice, but I wasn't necessarily able to stop it. I didn't necessarily believe that I should stop it. Hey, it worked for me for years. Why stop now?

I'm stopping now because I have breast cancer. Breast cancer has been very, very good to me. I'm a lot kinder to myself. I've had a lot of time to sit around on my sofa and listen to whatever comes up in my head. I don't need that voice anymore. It's no longer critical that I work so hard to be a good person, a hard-working person, to be completely beyond reproach in every way. It took this catastrophic illness to recognize that.

To revisit the beginning of this post, I'm alive. I'm not in pain. I know for right now that I'm doing the best I can. In some ways, it hasn't been a bad year at all.

Official Surgery Countdown Begins

"I don't know why we are here, but I'm pretty sure that it is not in order to enjoy ourselves." ~ Ludwig Wittgenstein

I can tell it's getting time for a new oncological procedure. I have once again completely let go. Letting go followed quickly on the heels of detachment and dissociation.

Last weekend, I ran a red light. This is not a thing I would normally do. I know lots of people do it several times a day, a little like Russian Roulette. I tend to stop for caution lights unless it looks like the asshole behind me has absolutely no intention of slowing down and that, if I don't keep going, I will probably be launched through my windshield. I didn't even see it. That was a very frightening experience, soI let my mom drive the rest of the day. After it happened, I could definitely feel a slight fuzziness in thought process. I could tell there were fairly large areas in my brain where there were no synapses firing.

Then I went to do my weekly grocery shopping. I'm a very decisive woman. My motto used to be, "If you need a decision, just call me and I'll make it." As I wandered through the aisles, I would periodically find myself just standing there, blanked out, unable to decide whether I should get bread or whether I even needed to go down Aisle 9.

Chemo brain, I thought. I've read it can go on for a decade after one finishes chemotherapy. Last Monday, more chemo brain. Standing in the middle of my bedroom, wondering which clothes to put on. I took four or five shirts out of the closet and ended up leaving them on the bed. The plan was to wear jeans. Then I thought maybe I just needed to switch to a skirt and that would solve my blouse impasse. Wrong again. I took out several skirts and they made their way onto the bed, too. Finally, after standing there for a while longer, I decided to go with a dress. Ah, yes. That way you only have to pick the appropriate shoes for the dress. I was up for that task.

I mentioned to Therapist that I was having this standing around like a deer in the headlights problem and I attributed it to the chemicals still floating around in my body or lodged in places like my liver. I noted my irritation and frustration. She parried with her diagnosis of dissociation.

That might explain my general level of detachment I've noticed for the past couple of weeks. It makes perfect sense. What do I do when I'm anxious? I dissociate. Does the upcoming surgery make me anxious? That word doesn't begin to describe how I feel.

I'm still detached, but I managed to get through grocery shopping on Sunday and getting dressed this morning without aimlessly standing around. I had a little panic attack last night, but then I suddenly remembered that I'm not in control here. Oh yeah! I can let go. So I did. Whatever happens will happen and I'll get through the week in the hospital with God's grace. I don't have to worry about those five days.

This phenomenon seems to be limited to breast cancer-related issues. I may not be able to let go in any other situation, but there seems to be an automatic on/off switch when it comes to breast cancer. Suddenly I'm on autopilot and at peace with whatever comes. I'd really, really like it if they would stop hurting me, but my life has never been about what I like or dislike. It has always been about what must be done. I'm okay with that. I mean, I might as well be because who cares what I want? Not the universe, obviously.

The current surgery countdown is 22 days.

Surgery Countdown

On Friday, my therapist asked me what my plans were for Christmas. I was dumbfounded. Plans? I'm supposed to be making plans? Well I don't have any. My big plan is to hide from myself as long as possible how quickly January 8 is looming on the calendar.

Nonetheless, I'm festively attired and jingling still. How can I sustain both? Well, that's why people call me "complex." It's just one more dichotomy amongst many others. I haven't done any Christmas shopping. I don't even have any plans to shop. I haven't decorated my house. I haven't participated in thinking about a menu. I try not to hear Christmas songs, even though they're absolutely inescapable.

I lose track of days and months. Have we gotten through winter yet? I actually had to think about that question over the weekend. Let's see...I know it's not May. Are we close to May, though?

I rode my stationary bike on Saturday and, instead of feeling a bit more energized, I just ended up feeling more exhausted than when I started. That fatigue followed me all day yesterday and today I still seem to be at least partially brain dead.

Breast Cancer Has Been Good to Me

I've been blithering on all week, so just a short post today.

When my hair came back after chemo, it came back really curly. I used to have a few small waves in my hair, but most of it was straight. The waves used to drive me crazy because they always ended up ruining my hairstyle in one way or another. As a matter of fact, before cancer treatment, the hair I currently have would have driven me crazy. It's impossible to style and kind of curls in unexpected places and directions. The hair right over my ears flips forward towards my face. People tell me they can't believe I ever had long hair. They think the current length is fabulous. It's about 1.5 to 2 inches long. I'm happy. I'm just happy to have hair. I've come to be very accepting about things that would have made me miserable a year ago. Yay for breast cancer!

Surgery is looming in front of me. January 8. Whenever the thought enters my mind, I have to banish it almost immediately. It's terribly anxiety-provoking. The thought of being in a hospital for a week, the thought of the nausea/vomiting I experienced during the first two surgeries, the prospect of having a couple of drains attatched to my body--it's all pretty awful to contemplate. Over and above all that, the nagging question is, when will they stop hurting me? I'm tired of being hurt. Really, really tired.

However, my choice to do this now does have some up sides. I like to think that, in the not too distant future, I can be through with the hurting. I will also have a breast again. That's very exciting. My prosthetic breast has developed what I like to think of as continental drift. It edges its way towards the center of my chest. It's kind of like a breast unicorn or something. I just try to find a private place and rassle the damn thing back over to the side. I have no idea why it started doing this. I've lost some weight, so that may be part of the problem. The thing is, I'm okay even with that.

There's nothing like a year of cancer treatment to increase your ability to accept where you are physically. Weird ass hair, breast in the middle of my chest...it's all good to me. Seriously, breast cancer, though I wish I never had it, has been a good thing in many ways. However, this is about as much growth in self-acceptance that I'm ready to have right now. I'd rather not deal with the prospect of cancer returning somewhere. Breast cancer can metastasize in various places throughout the body, but no matter where it is, it's always still breast cancer. Enough, enough! No more growth experiences!

Having said that, I'm putting all of this out of my mind for the day. The breast unicorn is signing off for the week.

Breast Cancer Awareness Month

http://www.planetcancer.org/html/index.php

A site specifically for young people with cancer of all types.

Reconstruction Surgery Date Set

I spent the morning doing number-related stuff, which I hate, so I decided to indulge myself and spent the last part of my day here. I just got off the phone with my plastic surgeon's nurse and she scheduled my surgery for January 8! I'm excited and terrified. I'll be spending five days in the hospital. The last time I was in the hospital (for my mastectomy), they had these beds that made me sea sick. The inflate and deflate periodically. I'm sure the goal is to prevent bedsores for people who are hospitalized for long periods. I was nauseated from the surgery and the bed just made it worse. Furthermore, it was noisy. It's going to be painful and there will be a substantial period of time when I'm pretty limited in terms of my physical activity. On the other hand, it can't possibly be any worse than chemo. It won't last as long, for one thing. Here's the other weird thing: nipple and aureola won't be constructed for a year after my surgery. I'm not sure why that's so, but I think it's because there's a lot of adjusting that goes on in an effort to make sure everything is symmetrical and looks like an actual breast. I'm sure I'll be complaining about it all here.

Reconstruction

"Modesty is the conscience of the body." ~ Honore de Balzac

Yesterday, after I got home from my visit with the dog I'm hoping to adopt, I got another call from my oncologist's nurse. She had called Tuesday to find out if I'd had a mammogram done. (She's the one who ultimately confirmed I didn't need one when I was there last week. Shirley drives me crazy.) The minute I heard her say her name, I panicked. She told me before that the mammogram was fine, but the white blood count was a little off. No reason to worry, she said on Tuesday. So when she called yesterday, I thought maybe he'd changed his mind about the blood work. After telling me her name, she could have at least told me immediately that everything is okay. The less I hear from my cancer doctors (all of them, even my beloved Dr. Ross), the happier I am.

I was looking for something in my suitcase last night and I came across my photo panties. I'm not sure I shared any info about that. The first time I saw my plastic surgeon, they made me take everything off and put on the teeny, tiny little panties. Now I don't mind people looking at my mastectomy. I've had so many strangers looking and touching that the whole breast thing is no big deal. (I've even threatened to make people look at it if they give me any trouble about anything.) The doctor made me drop my gown and stand in front of him (on a little platform). He made me turn around so he could look at my backside. Okay. This is difficult for anyone, I think, who doesn't undress for a living, but for a survivor of sexual abuse, it's pretty harrowing.

The only way I could get through it was to dissociate. Dissociation has caused problems for me all of my life, but sometimes it's a huge help. This was definitely one of those times. I know the man had no interest in me other than as a surgeon, but that didn't make it any easier. With any luck, I'll never have to do that again. He's very sweet and tries to make it less uncomfortable for me, but it has been a very very long time since any man, other than my hubby, looked at me without clothes. Standing on a pedestal makes it even more fun.

The point was that he was trying to figure out where to take the skin and tissue for reconstruction. There are three places they normally use: the tummy, the back or the butt. I don't have much to spare in any of those places, but we're going with the tummy. I'm still trying to get over the fact that, because my bra size is 36D, I probably won't be able to have it reconstructed to that size. It has to do with the weight of the breast potentially tearing the veins that will be sutured together. I'll probably need to have a breast reduction on the other side so I'll match. As anyone would tell you, my breasts used to be one of my best anatomical features. Have I mentioned lately that I really hate having breast cancer? The good news is that the tummy tuck will return me to that fabulous pre-50 flat stomach. Of course, I'll have a scar that runs all the way across my stomach, but as I said, no one ever sees me other than Hubby. At this point in our relationship, a scar isn't even going to faze him...I've looked pretty wretched for most of the past year. Virtually anything would be an improvement.

Oncologist and Plastic Surgeon

I got back from M.D. Anderson late Friday afternoon. What a debacle! I had a mammogram check-in scheduled for 7:00 a.m. (Have I mentioned that I'm not a morning person?) I drug my butt out of bed at some barbaric time of day only to find that I didn't need a mammogram. My oncologist just hadn't seen the mammogram I did the last time I was there. I had blood work scheduled and that went fine...they're virtually always on time. My next appointment was at 1:15 with my plastic surgeon, followed by an appointment with my oncologist at 1:30.

They led me back to the little exam room at around 1:20, made me put on "photo panties" and a gown. The doctor didn't show up until around 3:45. I'm very claustrophobic, so by then, I needed several tranquilizers. My mom kept suggesting that maybe we should let someone know about my appointment with the oncologist. "Oh no. That's okay," I kept saying, "They always know where you are." Right. That worked before, but not this time. I ended up missing my oncologist appointment altogether. I really wished to see the plastic surgeon, but even I would admit that the oncologist visit was more important. I got a call from his nurse this morning, telling me that the mammogram was fine and my white count was a little low, but not enough to worry about. I'm currently trying to be okay with that statement. (I tend to panic a little after the experience with the mammogram radiologist here.)

The good news is that I can have reconstruction surgery as soon as I can schedule it. That may be as early as January and as late as March. The plastic surgeons are really busy there. I can't call his scheduler until Friday to give the paperwork a chance to catch up with me. On the one hand, I really look forward to getting this over with. On the other hand, I'm aware that it's not going to be fun in a very big way. I'm working hard to get back in good physical condition so that my recovery will be easier. I've managed to do yoga three nights a week at this point and I'm going to add stationery bicycle this evening. I'm just going to do 15 minutes at a slow pace with no resistance. I'll just have to see how that goes. If I'm not exhausted tomorrow, I'll continue to use the bike once or twice a week.

The other news is that I'm in the process of getting another huskie. I had contacted a rescue organization and met this wonderful boy named Sebastian, but he's big and wildly enthusidastic about everything. I thought about adopting from the Humane Society, but when I went to the city's animal shelter, I knew what I had to do. Those dogs will die if someone doesn't adopt them; they're a euthanizing facility. It's been emotionally difficult to go there, but doing the right thing is usually not the easy path.

I met a 10 month old husky mix when I went by this weekend. He's white and doesn't have a mask, but I'm good with that. He's in the process of being evaluated by the animal behariorists to ensure that he's not aggessive. They told me that they should have that finished by this afternoon. I'm so excited!

As soon as they finish the evaluation process, we can have a "meet and greet" with Sheba. I think they'll get along fine, if her experience with Sebastian was any indication. I've been doing a little reading about how to introduce a new dog into the household. I was right; it's best to have a male and female. The worst combination is two females. Very interesting. I would have thought that two males would be the most aggressive. I think that we probably need to do a couple of get togethers with Miss Sheba Woo.

They won't be open until 11:30, so I'll have to contain my excitement. This makes me very, very happy.

Reptilian Brain

We need cancer because, by the very fact of its insurability, it makes all other diseases, however virulent, not cancer. ~ Gilbert Adair

It dawned on me this morning that, somewhere in the reptilian part of my brain, I still believe that I'm sick and, therefore, weird looking. It's hard to get over the feeling when you've spent most of a year looking like you're getting ready to die. Then there was that 7 weeks when I wasn't allowed to wear a bra because of radiation. I wore shirts over my tee shirts to try to camouflage the remaining (unsupported) girl. That was really depressing. I just had to stop looking at myself in order to pretend it didn't matter to me.

In reality, my hair is growing back really quickly. I was still pretty bald in July when I finished up radiation and now it's probably about an inch long. It's curly, thicker and much darker than my hair used to be. The hair on the rest of my body is coming back really slowly, but that's okay with me.

I also now have some color in my face. During chemo and radiation, I was just white the whole time, with dark circles under my eyes. My face was completely round because of the steroids they used. So there you are...a white, moon-faced bald person with dark circles under my eyes. Wow. I've never looked so attractive. I gave up the desire to wear make up or nice clothes. Partly it was because I just didn't have the energy, but it was also because I just hated the way I looked. There wasn't really anything that could be done to make me look better, anyway.

I've been wearing makeup for the past couple of weeks and I've even worn some skirts and dresses to work. I'm not getting much joy out of it, though. My therapist asked me last week if I was excited about being able to dress up again. Um, no. I wish I were, but I'm not. Throughout the past year of treatment, I always assumed I'd be happy to be able to dress up again. It's just another one of the many assumptions I've given up.

I just realized yesterday that it's time for my three month checkup. I think that's part of the reason why I noticed how unattractive I feel. I try not to think about cancer until I have to. It makes me so anxious to even think about going to M.D. Anderson. I feel a little queasy and a lot of dread. I'm sure everything will be okay, but I'll have to manage my thoughts until I go. My appointment is scheduled for next Thursday.

That means I'll be incommunicado for a while next week. On that note, I need to write a long email to the attorney who lives next door. I've decided to talk with him about the breast cancer diagnosis. They had been watching the cancer grow for some period of time. I did my part...I did monthly self exams and annual mammograms. Well, I'll save that for another day.

Chemotherapy

As if having ghastly looking fingernails weren't enough, one of them is now infected. My first clue was the odor of something decaying that seemed to have attached itself to me somewhere on my body. It took a couple of days to figure out the offensive odor was coming from my middle finger. How appropriate. I almost expect a parade of carrion following me, waiting for me to stand still for a while.

The mouth sores are back, along with a generally sensitive mouth. I live in Texas. You're required to have Mexican food weekly at the very least. I thought bean and cheese tostado compuestos would be a viable choice. It was--right up until the second tostado.

I'm emotionally very edgy. The mere fact that Hubby is breathing annoys me. I know he has to breathe. I just wish he wouldn't do it in my space. Meanwhile, Hubby is in a slightly hypomanic period, which is making him a tad testy. I'm sure he wishes I'd stop breathing, too. We're just a laugh a minute at my house these days.

Reclaiming my Creativity

As I near the end of chemotherapy, I'm feeling more creative than I have in years. I've started to reclaim some of those creative parts of myself that I left behind because of my father. Unfortunately, my father was not only psycho, he was an extremely gifted person. His entire family had extraordinary talent in music and art. When I was a child, I thought he was an excellent storyteller.

My father was the most narcissistic person I've ever known. That's saying something, because I tend to attract narcissists in droves. Under my father's tutelage, I learned how to effectively manipulate them. But that's another story for another time. One of the ways my dad's narcissism manifested itself was an inability to tolerate anyone else doing anything better than he could. He had the artistic thing wrapped up and was probably somewhat gifted mathematically. I lost my interest in math very early because of some childhood incidents involving abuse. It was a terrible paradox. How to be good at things without threatening my father, who required high academic achievement from me.

Some things just got abandoned along the way, as a coping mechanism probably. I gave up art when I was around 15. I gave up music at about the same age. I hung on to my superior verbal skills, though I kept them to myself for the most part, unless I was at school.

I started to reclaim my math skills about ten years ago and finally came to understand that I'm not a complete math idiot. I'm actually pretty good at it. I never let my dad know that I had discovered my abilities. At about the same time, I decided to pursue my interest in science, specifically, the TOT and cosmology.

I gave up creative writing when I was around 30. That was more a result of a dearth of time and imagination than a response to anything my father did. This journal serves as a means of reawakening my commitment to writing, if only for my own pleasure.

About a month ago, I decided one night to draw one of my huskies as she lay on her bed in the living room. Suddenly it dawned on me that I used to draw pretty regularly and that I miss it. I also found myself led to learn how to create mosaics. I'm awash in creativity.

Before I started working again about 15 years ago, I used to spend a fair amount of time crocheting, knitting and doing crossstitch. I didn't stop doing those thing becase of my dad, but because of the heavy toll my job took on my energy level. I plan to crochet a throw for one of my friends at work. I've just been looking for the right pattern.

It's surprising and exhilarating to find the parts of myself that got lopped off along this journey. It's almost too much to bear. There are so many things I wish to do, so few hours in the day. I don't know where the surge of creativity has come from, but I'm embracing it with all my heart.

It's a State of Mind

"A cancer is not only a physical disease. It is a state of mind." ~ Michael Baden

My next to last chemo treatment is scheduled for next Tuesday. This should be a relatively happy time since the end is now definitely in sight. Unfortunately, the part of my brain that's keeping track of how bad I feel is screaming at me, "Don't go! Don't go!" As if I had a choice.

It's gotten really hard for me to keep putting this out of my mind. I was so good at that for such a long time. Fuck.

My toenails are turning black. One of my thumbnails is also turning back. The last time I was at the hospital, I had a discussion with a patient (which I did not wish to have) who told me that her nails turned black and fell off. Apparently the good news is that, when that happens, it doesn't hurt. Yay.

Just in case my week wasn't already crappy, my brother in law is spending the night at my house tonight. I'm spending the night at my mom's condo. I just don't have the stamina to deal with him.

Hell, the truth is that I'd be going to my mom's condo, no matter what the circumstances. I really don't like "Baby Hughey," as my therapist likes to call him. He reminds me a lot of my dad, although my dad was psychotic. Baby Hughey hasn't worked in the past 30 years, was spongeing off his mother's social security payments when she was alive.

Somehow he's managed to find someone else willing to support him. He's living in a shelter, but the rent is $250 a month. How does that qualify as a shelter? I thought those were usually free. Oh well. The important thing is that he's not moving in with me.

Lately I find myself thinking about what great times I used to have in high school and college. That's just an indication of how bad things are now. Even worse, I just searched for images of my first boyfriend. I found one. It's hard to connect him with the young man I loved. This is just sad.

Okay. Enough whining and complaining. I'm getting on with the day.